The Ford Board

First floor, Radiation Oncology.

2011-06-22T08:49:00.003-06:00

First floor, Radiation Oncology.
Yesterday was Ford's consultation with the Radiation Oncologist at the Huntsman Cancer Hospital. The check-in was essentially the same as on the second floor (minus the blood draw for labs). We first met with Dr. Mike Montejo who is in his last two weeks of Residency at HCH. At the end of June he will leave for Florida to be a "real" doctor off on his own. Dr. Montejo had a medical student "following" him. It adds another dimension of enlightenment with residents and followers because they spend extra time explaining the what's, how's and why's of what is going on with a patient, the diagnosis, the exam, and the procedures.

Dr. Montejo was very thorough in going through Ford's history of diagnosis and treatment. Through this process, he told us that the activity in the stomach was not only in-between two lymph nodes, it had now infiltrated the lymph nodes. New insight. He also told us that the bone marrow biopsy that had originally been done to diagnose/stage the lymphomas showed that it was the marginal cell lymphoma (MALT) in his bone marrow, not the aggressive, intermediate lymphoma (diffuse large B cell lymphoma). This is a bit confusing on so many levels, but we did not delve into any questions or explanations at this point. The rest of the time was taken up with explanations about radiation therapy and his examination of Ford.

Next, we met with Dr. David Gaffney, the radiation oncologist. He was very good at making connections with Ford. He is a biker and was interested in the recumbent bike aspect. He has had an ACL repair. He also explained that he was a lymphoma cancer survivor of 30 years. He also reviewed Ford's history, did an exam, took time to answer our questions, and then said to us that he would like Ford to allow him to treat him. That was interesting.

Dr. Gaffney then asked if we knew that Ford had an afternoon appointment already set up for what they call "planning." Although we had not been aware that we to be there all day, Ford called in to work and let them know what was going on, we also called family and let them know we would be longer than we thought.

We were sent off to lunch at which time Ford and I discussed the situation. Ford feels that this is what he needs to do and has made the decision to proceed with the radiation treatment.

Ford made it to "planning." This is where everything is set into motion. A CT scan was taken and the results will be "fused" with the PET scan results for a detail on the area that is to be treated. Measurements were made, Ford received "tatoos" that will pinpoint treatment areas, and all is entered into computers in order to specify and specialize treatment.

His next appointment is Wednesday, 29 June 2011, at which time he will go through a simulation. To our understanding, all will proceed as if he were having a radiation treatment, except that there will not be any radiation. This allows everything to be checked over and tested to assure that all systems and settings are correct. Then the next day, Thursday, 30 June 2011, will be his first treatment. His protocol is 15 treatments, one every day, skipping weekends and holidays. By my calculations, the last treatment will be Thursday, 21 July 2011.

We will appreciate all prayers offered in our behalf, for Ford's treatment, protection of healthy cells, and recovery, as well as for protection as we make the two-hour round trip for those days to follow.

June Huntsman Day

2011-06-15T09:28:00.005-06:00

Yesterday, Tuesday, 14 June 2011, was, what we've come to call, a Huntsman day. The Huntsman Cancer Institute and Hospital is a wonderful place with many wonderful people employed there. As great as it is, I do not look forward to these days. Perhaps it is because I now have a realization that our lives can be changed with a few simple words within a few short minutes.

Ford checked in for his PET scan at 6:30 am. He did well and was actually done earlier than previous times. Instead of staying in SLC until the 2 pm appointment with the doctor, we drove back to Provo in order to take care of some more details of moving.

We have moved out of our very large Grand Ave. home into a much smaller home. It, in the long run, will be a very good thing. Right now, we are very exhausted and still not completely done. A few things remain in the garage on Grand and a huge amount of items stored for a yard sale this Saturday. I had hoped that we would be able to go through more of the things that we moved in order to add to the sale, but that is just not going to happen.

Anyway, back to the Huntsman day. We arrived back at HCI in plenty of time for our 2 pm appointment, however the doctor was running behind schedule. She walked in to our room about an hour and minutes later. When she walked in, I could tell from her demeanor that all was not as we might have hoped. She asked the routine questions and gave Ford a thorough check over. Ford's RBC count is down and his creatine levels were a bit off. She then brought up the scan results. The thickness in the stomach where the MALT lymphoma is located has increased. The color that indicates activity levels of the lymphoma has changed also. These show increased activity. Being very near two lymph glands, the doctor is concerned. She told us that she thinks it is possible that the area is beginning to ooze. While it is not a huge increase in thickness or activity, it is an increase. She would like us to consider radiation therapy. She believes from her experience, that the MALT can be totally eradicated with radiation. We have the option of not doing radiation and seeing how things go, however, she would like to do some preventative measures (the radiation) before there is an emergency situation. She works with one doctor at HCI for this therapy. We have scheduled an appointment to consult with him next Tuesday. Then we will decide what we need to do. The therapy is every day, Monday through Friday for four weeks. It is a two hour round trip drive and the radiation treatment is only minutes in duration. We will do what we need to do, as always.

Not what we would have liked to hear, but it is what it is and we will do what we need to do and all will work out.

February Frisbee Bests

2011-02-28T20:26:00.001-07:00

February

I set a new personal best today in the triple loop: 17.

My double back loop personal best is now 20.

13 consecutive months with at least one personal best.

Ford

Anniversaries

2011-02-23T07:04:00.003-07:00

Two years ago today, Ford was released from the hospital after spending time in the ICU and a few days in a regular room. He had suffered a seizure after his sodium levels had dropped critically low. He also had aspiration pneumonia from that seizure. Dr. Alward was the critical care doctor and pulmonologist who was on call in the ER that night and has taken very good care of Ford

Yesterday Dr. Alward said Ford had recovered so well that he needed to release him from his care in order to make room for the people who were really sick.

Another milestone. Hooray!

Thank you, Dr. Alward, for taking care of Ford!

"Huntsman Day"

2011-02-01T17:29:00.004-07:00

Today was a "Huntsman Day." While we have appreciated this great facility and the wonderful people that work here, every three months I have come to dread the "Huntsman Day." We never really know what the outcome will be and in an instant, our lives could be changed... again, just like they were two years ago.

However, today, like each visit we've had the past year and a half since Ford completed his round of chemo, we've left with positive outcomes.

Ford's blood tests came back with the best results to date. Every thing looks very good, Ford looks very good, and he feels good. We reviewed the happenings of the past three months such as Christmas Day in the ED (previously the ER, but now all the signs say that instead of just a room, they are a full department), the possible lung infection in January (promoted by all the dust and debris from the construction project at Ford's work place), and the discovery of MTHFR and gene mutations that reveal that Ford is at risk for cancer, blood clots, and early heart disease (good to know... now we can work on heading those things off) (and, yes, that last bit was written with a touch of sarcasm).

Dr. Glenn felt so positive about Ford's check up that she gave him a one-month reprieve. He now will have four months between checks. That will be in June and will be his two year anniversary of having one of the two forms of cancer in remission. We are working hard and looking forward to the day when we can make that a clean sweep across the board. Which brings to mind the comment from the nurse practitioner who, after we described the nutrition routine, the light therapy, and the green smoothies, said: "That's nice. Everyone needs placebos to help them believe...the mind can be a strong healing element." ~sigh~

Til later. God bless everyone!

PS from Ford: Triple loop record is now 16! Hooray!!

Triple Loop

2010-12-01T20:09:00.001-07:00

Triple loop personal best is now 14.

Ford

PRs

2010-11-03T21:02:00.001-06:00

Today I extended the triple back weave outdoor record from 21 to 22.

The double back loop record of 18 was set in mid October.

Ford

Three month checkup

2010-10-29T07:02:00.002-06:00

Yesterday was Ford's followup day at the Huntsman Cancer Hospital. He was scheduled for a 7:30 am PET scan, followed by a blood draw. His appointment with Dr. Glenn was scheduled for 4:40 pm. This large gap in time was to allow time for the results of the PET scan to be completed by the radiologist and then sent to Dr. Glenn.

We had made arrangements to fill that time. Ford needed to move information from his old computer to his new computer and Apple had told us they would need approximately 24 hours to complete that task. We figured that as long as we were going to do that transfer, it would be a good time to retrieve information from our old computers and move them to the computer that I would be using. This included a MAC Performa that was purchased in 1994. The long and short of it all was that all of our computers were at the Apple Store in downtown SLC. Since we estimated that the appointment at the HCH would be done about 6 pm on Thursday, that was no problem. We even scheduled a workshop for Ford to attend from 3 to 4 pm at the Apple Store leaving us enough time to get back to the 4:40 pm appointment.

When the PET scan was completed and we checked in for the lab work, the nurse told us that there was a possibility that we could come in at 12:30 pm instead of waiting until 4:40 pm. Okay. That was probably a good thing. Then we would get the results earlier and would ease the tension of awaiting the pending outcome a bit.

We left the HCH and went to the U of U Guest House where we had stayed overnight. We had asked for a late checkout, but if we hurried we could check out by the normal 11 am time. We were back in our room at about 10:20 am and were getting things gathered and packed when the phone rang. It was Nurse Debbie asking if we could come right back in and see the Dr. now. We dropped everything and made it back up to the HCH. We were ushered right back into a room and there we waited... for about 30 minutes before Nurse Debbie stopped in to apologize, tell us that the opening they thought they had, had closed up very quickly. Then, as if she had anticipated our anxiousness, assured us that we had not been called back immediately because they had found some abnormality in the scan or blood work. ~whew~ So we waited a bit longer, about 30 or 40 minutes more. When Dr. Glenn came in, she checked the meds chart for updates and said she was glad that Ford was off the coumadin. She asked the usual questions about pain, abnormalities, activity level, endurance, etc. Then she told us that while the results of the PET scan were not yet completed, she had taken a look at the pictures and she could not detect any difference between the previous tests. The MALT was not advancing and there was no sign of the Diffuse Large B-cell lymphoma. The blood work looked wonderful. All the numbers were where they were supposed to be. She was happy, because the previous check there was abnormal results with the hemoglobin and she had been concerned. Those were now normal. She questioned him about his nice tan and then there was a bit of a discussion about sun exposure, sun screen, and protection. Then she told us that unless the report from the radiologist had something different than what she had observed, she would see him in another 3 months. She did reiterate that there was the option of irradiating the areas in the stomach that showed the MALT and they could completely get rid of the lymphoma or they could wait until Ford showed some signs of problems. Ford said that he would wait and she commented that she thought that is what he would respond, but was just checking. Nurse Debbie told us that when the results came in from the radiologist she would email them to us. That was great! Now we just needed to get a computer back from the Apple Store so we could receive the email when we got home.

We left the HCH about 12:20 pm, finished checking out from the Guest House and went to lunch. Then Ford attended the workshop and afterwards asked about his computer. We checked in and were put in line and waited. About thirty minutes into our wait, the young man that was managing the flow of customers and customer service began to get concerned at how long we had been waiting. (The store was really crowded and there were a lot of people waiting for help of one type or another.) After some confusion about who to ask, where that person was, and which computer we were needing, we were connected with the right person and told that Ford's computer would be about another 30 minutes. The others would be ready in a day or two. While waiting the next 30 minutes, it dawned on us to check the email through Ford's phone. We did and only found a test email to make sure that the email address was correct before sending medical information. Finally, a little after 5 pm, we loaded up the computer and headed home. The first thing we did when we arrived home was to set the computer up and check the email. The results from the radiologist were just as Dr. Glenn had observed. Everything looked essentially the same. Hooray! It would have been great had things lessened a bit (like the last PET scan had shown), but with no advancing and no recurrences, we will take it and be grateful.

We are glad it is over with for another 3 months and will continue to look for ways to improve.

Two PRs

2010-09-30T15:10:00.000-06:00

I set two personal records yesterday.

I extended the double back weave record from 35 to 36.

I also counted to 10 for the first time in a triple loop. A triple loop is throw, throw, throw, catch, throw, catch, throw, catch... (this is a triple loop of 3 because there are 3 catches). Three disks in the air some of the time.

Ford

Double Back Loop

2010-09-27T18:26:00.003-06:00

I set a personal best of 14 in a double back loop on the beach. A double back loop is two disks, each catch behind the back, using only one hand.

The beach after 10am has a stronger, more consistent wind than I am used to. It is much to strong for multiple disks at my current skill level. So, I worked on fundamentals. A left-handed throw directly down the beach would come back to me. A right-handed throw 30 degrees to sea would come back to me. I do not remember seeing this pattern before. Fun!

There exists video proof that I was in the water...

Ford

July Check

2010-09-23T10:31:00.002-06:00

July was checkup time at the Huntsman Cancer Hospital. This time it was just a blood draw and a look over/q & a time with the doctor. A new Fellow doctor came in the exam room and hmmm'd. Then asked how long Ford had been anemic. ??? That was a first. At no time had anyone mentioned or indicated that Ford was anemic (it sure explains the lack of energy, however). We both shrugged and looked back at him blankly. Bright fellow that he was, he sensed that this was something new. He pointed out on the reports that the hemoglobin numbers had been going down the past three checkups. He indicated that it was not an iron deficiency. He continued with the general questions and then left the room to find and consult with Dr. Glenn. When Dr. Glenn came into the room, she looked at Ford with an amazed look we see with all doctors' visits. She told him how good he looked. Then she began asking whether he was bleeding out anywhere. Was he bruising or retaining fluids? No and no were the responses. Evidently, one of the causes of the type of anemia that Ford was exhibiting is caused by blood loss. He really does know what that looks like now after the experience he had after his knee surgery and he was 4 units low. She thought a few minutes, then continued with the rest of the exam. She asked about his coumadin, made some notes, and said that she would see him in October when the PET scan would be done along with blood work. Other than the drop in hemoglobin, all looked good.

This was the one year mark since ending the chemo treatment.

WR

2010-09-13T22:22:00.000-06:00

World Record today. Double back weave: 35.

If your sport is obscure enough, any personal best is a world record.

So, two frisbees. That is the double. Catch behind the back. That is
the back. Throw right, catch left; throw left, catch right. That is the
weave. Double back weave. Who else does this?

Thirty-five consecutive throws and catches. Personal best.

Marched about 60 meters into an inconsistent light wind.

Ford

Why the Half Marathon?

2010-09-12T10:49:00.002-06:00

In January of this year, our oldest daughter phoned Ford and asked if he would be her training buddy to run a half marathon (I will refer to her in this blog as "S"). The Utah Valley Marathon was scheduled for 12 June 2010. The route: from a point just south of the tunnel in Provo Canyon straight down University Avenue turning west into the Prove Towne Center Mall parking area in south Provo. She had also enlisted one of her sisters, our second daughter, (who was not living in Utah) to train and run it also (I will refer to her as "E"). "S" had a great plan worked out on how to get them all in shape and be able to train on a schedule preparing them for a half marathon. She sent them each a guide so they would all be working from the same information. Each would run certain days on their own. Ford and "S" would get together once or twice a week and run together. As often as possible, "E" would make arrangements to be in Utah to run with them. They began running portions of the route increasing the distance each time. Together they had set a goal for finishing the race under 4 hours, easily doable without creating stress or injury. They wanted to be able to enjoy this whole experience as well as accomplish the actual running of the race.

They made a great team supporting each other. As they began to progress, their confidence increased with their abilities. They talked, planned out every detail, and they ran.

There were a few days and weeks that Ford had to take off due to injury. Usually this was when he had tried to work beyond the scheduled training and push too hard. (Great learning opportunity.)

The day came to pick up the race packets. The excitement really began to build. "E" came to Provo several days before the race. The big day came. The runners had to be delivered up to the starting point early.
If I remember correctly, there were over 1,000 runners in the half marathon category. The full marathon runners were starting their route further up the canyon at the Wallsburg turnoff. The weather was cloudy and cool. Not long after dropping them off, it began to mist in the canyon. It rained hard along the route.

Ford, "S," and "E" stretched, warmed up, and then, after a bit of a delay in the start, were off and running. They talked each other through the jitters and excitement of wanting to take off too fast in the beginning. They kept to the pace and strategy that they had worked on. Family members were leapfrogging along the race route to cheer, encourage, and give them support. By the time the runners began exiting the canyon, the rain had stopped. The three of them looked good all the way. They were talking and smiling and giving the "thumbs up." At about the turnoff point from University Avenue into the mall area, "E" got this burst of energy and began a sprint. Ford and "S" pursued. Ford felt great and easily caught up and they crossed the finish line in with great strides. They had not only completed the race and enjoyed the run, they exceeded their goal by running it under 3 hours. For their first time, they felt this was awesome! Most all of us have felt that just training and running the race was awesome. The two daughters have plans to continue running, however Ford said that he was done and will return to his recumbent trike and frisbee.

The response of each of the doctors that Ford has follow-ups with is basically the same. They express amazement at how good he looks, shake their heads when they hear that he has run a half marathon, and are delighted with his continued progress.

That about sums up the response and feelings most of us have. That and an immense feeling of gratitude.

Greetings!

2010-09-10T10:34:00.003-06:00

Greetings to all who might still be keeping an interest in our adventures! A few of you have mentioned the fact that there have been no posts for many months. Apologies to all. Time has moved very fast.

Since the last post was in June and it is currently September, I have pondered whether to "start from today" or "catch up."

Realizing that starting from today would lead to a number of questions from a lack of background, I've decided to post a brief current status and then attempt to "catch up."

On 12 June 2010, Ford completed his first (and has declared: his last) 1/2 marathon. The last post gave a brief announcement about his accomplishment. I had hopes that Ford himself would sit down and give details. Days turned into weeks and then months and hence, I failed to post any other updates. (Is that an excuse or disclaimer?) sigh

In January of 2009, when Ford had received the diagnosis of cancer and he decided to receive chemo treatments, we discussed whether it would be prudent to have his braces removed. Not knowing what lie ahead, yet having friends and associates that have experienced extensive vomiting, blistering sores in the mouth and throat, and being overall miserable, having braces would be one more thing to be concerned about. So he had them removed. This turned out to be a very good decision. However, most, if not all, progress that had been made was lost. On 30 August 2010, his braces were put back on. He is dealing with the realities of braces, ie: pain, flossing, broken brackets, loss of freedom of eating many things he enjoys. As is usual for Ford, he is dealing very well with it all.

He also has been experiencing headaches for about 6-8 weeks. As as is also usual for Ford, he revealed that pain to me about week 4. We are currently researching, asking a lot of questions, and trying to determine what to do. More on this later.

Suffice it to say that Ford is looking great, feeling good (with the above exceptions), he is working full time, playing as much as he can, and loving his opportunities to serve in the Provo Temple. On Wednesday, 8 September 2010, we were delighted to be able to recognize and celebrate another birthday with him. Life is sweet and we have much for which we are grateful.

And we still would not trade our experiences with any one else....

New accomplishment

2010-06-12T13:14:00.002-06:00

Today Ford added a new accomplishment to his list. He ran and finished his first half marathon.

We will post more detail a little later, however, just wanted to let any interested know that he and two daughters met their goal of finishing under 3 hours. They are amazing!!

Such a Good Day

2010-04-22T22:48:00.003-06:00

Today has been one of those days where you pray for the best and then brace yourself for whatever may come.

Ford's first appointment at the Huntsman Cancer Institute today was at 6:30 am. When we opened the garage door at 5:20 am, we could not believe our eyes. Snow?! We had expected rain, but snow? No way. The past three days have been record highs in the 70's. The roads were wet and the storm increased as we made our way to SLC. For me, it was a white-knuckle drive. I used to love to drive in all sorts of weather. I guess I am getting old. The fact that the lines on I-15 are all screwy because of the construction sure didn't help. With the precipitation, the dark, and the glare of headlights, it was hard at times to see where the lanes were.

Anyway, we made good time and closer to the HCI, the roads were clearer. The first appointment was for the PET scan. The procedure usually takes around 2.5 hours although the tech told me to expect about 3.5 this morning. Ford had some difficulty with the insertion of the IV, but said that he really got woozy when the radioactive sugar began to flow. He said that he struggled with not passing out. He came through with flying colors and the test took only 3 hours. We had anticipated staying in SLC until the time came for the labs to be done, followed by the appointment with Dr. Glenn, the oncologist, for the test results and checkup.

Instead, we opted to drive back to Provo (the sun was out by this time and the weather had cleared significantly). Ford was able to enjoy his usual breakfast routine and we both took time to get some more sleep.

It turned out to be a fairly beautiful day. The drive back up to SLC was uneventful. We were a bit early when we checked in yet it was only a very short wait before they called Ford back for his blood draw. For the first time in 15 months, I did not shadow him. I sat out in the waiting area because it typically takes less than 5 minutes, they send us back out to wait, and then call us back for weigh in and to take other vital information. This time I figured it would be a breeze because the morning crew had left the IV connection in so it would be easier to draw labs. I waited and waited and waited. After about 20 minutes, I asked if I could go in and see where Ford was. He wasn't in the general lab area. I was a little nervous. The area where they usually have inserted the IV before doing the chemo treatments was a little way down the hall and that is to where I was directed next. Sure enough there he was. He was sitting in a comfy chair that could recline, if needed (and it was needed). The lab tech was getting ready to fetch him some juice to drink to see if he would help him.....he was very sensitive today to the procedures and again was feeling faint. Even after this short recovery time, we made it back into a room 25 to 30 minutes ahead of our scheduled appointment. Our doctor usually has so many patients to see that she is often later than the scheduled time. I was just beginning to get a bit anxious about what the results might be, when she walked in. She was smiling as she announced that "Everything looked good!" "In fact," she said, "the irritation in the stomach (the MALT lymphoma that we were told was incurable at the present) shows a decrease."

I let out a huge sigh of relief. WOW! Not only is Ford doing well with his recovery, and not only has the Diffuse Large B Cell lymphoma been kept in check, the other cancer seems to be receding!!!! Ford and I were ecstatic. Dr. Glenn gave a slight chuckle as we celebrated with high fives. After checking him over and getting answers to all the important questions, she told us she would see us in three more months. We were actually leaving 10 minutes before our appointment time.

It has been a good day. And we are very grateful for the healing Ford has been blessed with. The short, simple expression says it all: God is Good! And especially today, we are filled with an immense gratitude for His goodness.

Oh, BTW, Ford's INR on Tuesday was 2.4. !!!!!!

On a Roll

2010-04-13T11:25:00.005-06:00

Last Tuesday Ford's INR was a 2.1. )-: While this was still in the GOOD range, it was a drop from the week before (2.6). There was disappointment that it was in the downward direction. Ford had started back with running the day before, so this may have impacted the results. There is no really good way to tell except to wait until the next week and see what happens.

Today was next week. His INR came in at a 2.3. Hurray! We may, just maybe, have found a balance. The next INR is one week away. If it comes in within the desired range, then the INR checks go to two weeks.

Next Thursday, 22 April 2010, is Ford's check at the Huntsman Cancer Institute. Bright and early (don't know how bright it will be at 6:30 am) he is scheduled for the PET scan. That is the test where radioactive sugar is run through his system via an IV and then tracked to see where it goes. If it gathers in any particular area, this is referred to as a hot spot. A hot spot indicates cancer (cancer feeds off sugar). We do not want to see any. We anticipate that there will be an area in his stomach where the MALT lymphoma was centered at the last check. It would be fantastic if this area was a no-show. The bigger question at this point is whether there are hot spots any where else. Last January 2009, there were hot spots in the stomach, lungs, and bones from the Diffuse Large B Cell lymphoma. In June 2009, after the chemo treatments were completed, those areas were no longer considered hot. We are hoping and praying that this is still the results. In the afternoon, Ford has his appointment with Dr. Glenn (and the resident Fellow doctor).

Thank you to all who are still tracking us and are caring and praying for us. There have been so many in our neighborhood that have had need of prayers and healing. Many have been in critical situations and had miracles happen. A few have literally been brought back from death's door. What a great witness of the power of God! We are so blessed with dear family, friends, co-workers, and amazing neighbors!!

No Foolin'

2010-04-01T09:17:00.003-06:00

Our normal unusual routine has been delightfully interrupted this week with the visit of our daughter and granddaughter, therefore, the INR news of the week has been delayed in getting posted.

With a week of no exercise due to a pulled muscle, and with no lettuce on his regular veggie Subway (lettuce is an almost instant coagulator), Ford's INR result this week was a whopping 2.6. That is a record so far since he began this round of coumadin!

(While today is 1 April--April Fool's Day--this is a legitimate result and blog.)

Looking Good

2010-03-18T18:26:00.012-06:00

When I picked Ford up from work this evening, I asked how he was doing. He quickly replied: "BYU won in double overtime and I am off the Lovenox injections." Enough said?

At his appointment with Dr. Alward, his INR was a 2.1!!!! Dr. Alward checked him out and looked over all the reports. He commented several times how good Ford looked. He does not think that either altitude or exercise had anything to do with the drop in Ford's INR. He didn't venture to explain what he thought it was. Ultimately, the important part is that the INR number is back up into the normal range. The next check with Dr. Alward is 6 months, all things being normal. He also did not seem to think that radiation was an option for Ford, given his history. Radiation is what Dr. Glenn was suggesting will happen if the PET scan in April turns out with good results, good results meaning that there is no sign of the Diffuse Large B cell Lymphoma and that the MALT has stayed in the stomach area.

One step at a time. For now, that completes all the checks and re-checks for this month for Ford.

Whew, it is barely half way through and it has already been a long March.

Think 2

2010-03-18T09:08:00.002-06:00

Tuesday Ford has his INR checked again. His number was up to a 1.8. Hoorah! This afternoon is his 4 month check with Dr. Alward. We are all concentrating on thinking 2, the magic number that will let Ford discontinue the Lovenox shots. His stomach is already rainbow colored with a lot of purple, blue, and yellows. He says that it doesn't hurt, it just looks really bad. So today, please think 2.

Downer

2010-03-13T08:18:00.002-07:00

Ford's INR went down between the Tuesday to Friday check: 1.4. There is another adjustment to his Warfarin and he will continue the Lovenox injections. His stomach seems to be adjusting.

Side Effects

2010-03-11T08:19:00.002-07:00

Tuesday morning Ford mentioned that his stomach was not doing well. He wasn't able to describe much of what was wrong, just that it wasn't right. He decided to go to work and see how things went during the day. He came home early and went to bed. My mind is racing through a list of things that might be causing this upset (flu, ulcer, constipation, food poisoning, or the MALT [the cancer that is slow growing, non-curable, centered in the stomach, and possibly what spawned the second form of cancer with which Ford was diagnosed). "A pain, but not really" and "it is more of an off taste" and "food makes it feel better" are descriptions that I had to go on. I could feel his frustration at not being able to give a more accurate account. Since stomach issues are one of the Red Flags that our doctor at the Huntsman said to watch for, I contacted the nurse we work with up there. After a few questions, she said that with such a general description, it really was a "wait and see what else happens." She did agree that the increase in exercise could cause an increase in metabolizing the Coumadin. Best guess is the stomach disturbance could be a side effect of the Lovenox. Our eldest daughter needed to take Lovenox during her last pregnancy (she inherited her dad's Factor V Leiden) and she remembered that it made her stomach sensitive for a while.

Yesterday Ford took things pretty easy. With his diagnosis last year, it was recommended that he visit a dermatologist regularly because his risk of Melanoma has gone up due to the cancer and chemo. Yesterday was one of those full body checks. Except for one tiny spot that needs to be observed over time, he passed the exam.

He is slightly improved today. We are praying for an increase in the INR enough to be able to discontinue the Lovenox.

Part of me (the cynicism/irony/sarcasm part) says that "Of course he will be able to come off the Lovenox." That will happen just as the 30 day supply finally arrives. You see, Lovenox is very expensive, approximately $113 for five syringes. If we coordinate through Medco/Acredo (DMBA's mail order pharmacy), the cost drops to $85 for 30 syringes. Dr. Alward's staff began the process with Acredo early last week. A fax, a phone call, another fax, many more phone calls, another fax, and practically the whole day Tuesday on the phone--being helped, being transferred, on hold, awaiting a return phone call, to infinity and beyond.....No one at Acredo was able to find a doctor's prescription in any form. Because of regulations, they would not approve using the prescription that was on file with 10 more refills that we were using last year, because after three months, it is no longer valid. When were the three months up? The middle of February, of course. Finally, last night the call came that the Lovenox would be shipped Thursday (today) via overnight delivery to arrive on Friday.

Ford will have his INR checked Friday morning. Honestly, even after all that process, I would be delighted if his INR is a 2.0 or greater.

As I look back and take a deep breath, I am grateful for the patience and kindness of all those people at Acredo that I interacted with on Tuesday. Dr. Alward's staff is amazing. And, we are blessed that there is such a thing as Lovenox that will help prevent Ford from having blood clots which could be fatal. We are thankful that we have insurance that helps cover medical costs and for Ford's employment. There is no doubt in our minds or hearts that God is gracious, loving, and generous. Each day of life is an incredible opportunity. All is well.

Coincidence?

2010-03-09T09:53:00.003-07:00

Seldom do I believe in coincidences.

Since both Ford and I are on Coumadin (actually we are taking the generic Warfarin), we both get our INR checked. We get it checked in different clinics. It did not take too long for me to get in a good range when I began the Coumadin. My number has been fairly consistent between a 2.4 & a 2.6. So consistent that the interval between checks has been a month to a month and a half. My INR check was yesterday and the number was a 1.3. ???? That is a tremendous drop. Just like Ford's was a significant drop. I am positive that I did not exercise 3 hours a day while on vacation. No, we did not change our diet. The thing that we have in common is the vacation. Coincidence? I think not.

So today at Ford's check I asked if altitude changes make a difference. "Of course," was the response. So far food, sleep, exercise, and altitude can change the levels. Oh, and the fact that using a generic brand instead of the true blue Coumadin can make a difference.....makes me wonder what other thousand things in the universe can have an affect on the INR level that we are not aware of.

The real question for me is: "Is there anything that we can personally do to help Ford maintain his INR in the level necessary to prevent blood clots?"

BTW, his INR today was up 1/10 to a 1.5. Still creeping upward, but causing a quandary with the doctor's staff.

Going Up

2010-03-06T09:57:00.003-07:00

The INR check on Friday was up .2 to a 1.4. We continue with the Lovenox until back in the normal range.

Ford is settling back in to a less rigorous exercise routine of about an hour and a half workout instead of the three hour workout he had enjoyed while on vacation.

All is well.

March-ing

2010-03-03T13:34:00.004-07:00

When the number came up for the result of Ford's INR check, I thought for a moment that I might be dyslexic. I blinked and asked if that really was a 1.2 I was looking at. The nurse was also surprised at the number. Does going on vacation result in a drop in the INR? Ford has been very diligent in taking his blood thinners. His diet has not change significantly. Why the drop? The only thing that he has changed in his routine is exercise. The whole time we were on vacation he worked out for about three hours total: running/walking (training for the half marathon), throwing and catching frisbees on the beach, and time on the stationary recumbent bike. Guess what. That can create the change. Who knew.

Well...it is back to the Lovenox injections until his levels improve. He is a trooper. He does not complain. He simply complies. I have no doubt that his visit with Dr. Alward in a couple of weeks will be interesting.

In the meantime, we are doing incredibly well, the glass is half-full, and we are tremendously blessed. We have been awed by the beauty of God's creations. We so are grateful for the generosity of my dear brother and wonderful sister-in-law. We have had so much fun being with them. Mahalo!

Fail/Pass

2010-02-16T09:28:00.003-07:00

From Fail to Pass, just inside the parameter, Ford's INR today was a 2.0.

Slowly, slowly he is making his way back up to where his levels need to be. For that we are grateful.

The next check will be in 2 weeks.

Ford has also taken on a new challenge. For at least two days of the week during his workout time, he is running. He has set some pretty challenging physical goals for the next several months. He has a proven ability to discipline himself to attain whatever he sets out to do.
It will be exciting to see him achieve his goals.

Tomorrow, 17 February, will mark the one year anniversary of his first chemo treatment. Subsequently, the 18th marks the anniversary of one of the most frightening days of my life, the day his sodium dropped dramatically and he had a seizure. He has no memory of that day or the events of the four days that followed while he was in ICU. That is probably a good thing.

We are both grateful that those days are over and that he is doing remarkable well.

On the Way Up

2010-02-09T22:20:00.002-07:00

Ford's 2.0 INR may not have been a short term success. The drop to 1.3 actually may have been a short term drop. Today his INR was back up to a 1.9. Woo hoo!

While on vacation, Ford did not drink his usual amount of water and was a bit dehydrated. And there was a miscommunication about nutritional supplements. Apparently a few small adjustments can make all the difference.

Short Term Success

2010-02-05T09:11:00.003-07:00

Ford was able to get a decent night's sleep last night. However, he failed his INR test this morning. The drop was significant enough (1.3) that it is being deliberated whether or not to add a Lovenox shot today. Other factors being questioned are whether his blood thinner is name brand or generic and whether any change in diet has affected his levels.

We will know when the doctor has time to look over the situation and make a decision.

Sleep Solution

2010-02-04T19:55:00.003-07:00

One residual effect of chemo has been that many times Ford has a difficult time falling asleep at night. We have tried many different things but nothing has worked all the time.

We finally found something that allowed him to go to sleep and stay asleep: Vacation.

I have not seen him look so relaxed and at ease for quite some time as I did on our short trip to Texas. The very first night Ford went right to sleep and slept for almost 9 hours. Then he also took 2 naps during the day. Wow! The only night he had trouble sleeping was the last night of our vacation when he new we would have to be getting up early to get everything packed and get off to the airport.

BTW: It is very disappointing to anticipate warm Texas weather only to find that a cold front was blowing through and it was actually warmer in Provo than it was in Texas! But we had a good time in spite of that.
I loved being back in Texas and found myself yearning to spend more time. Many of the places we visited brought back tons of memories of growing up in South Texas.

Pass/Fail

2010-01-26T13:50:00.002-07:00

Each INR check Ford rates as a Pass or Fail. The past four checks, for him, have been all Fail, even though two consecutive weeks were moving in the right direction. Finally, today, he had a Pass. His number went up to a 2.0. Hoorah! That is 2/10ths of jump from last week. The range that is desired is in-between a 2.0 and a 2.5. We are so grateful to our friend Dr. J.W. and his lovely wife who have given us valuable information and help.

Second Three-month Check

2010-01-21T20:38:00.002-07:00

This afternoon was Ford's second three-month follow-up since he finished with his chemo.

The blood tests came back with nothing irregular, no flags, no spikes, no markers. Dr. Glenn said that all appears to be going well. She said that at the next three-month check, Ford will have a PET scan done. If the lesion in the lining of his stomach from the MALT lymphoma has increased, that they will look at treating it with radiation. She explained that they usually do not consider radiation therapy when someone has been diagnosed with a cancer that is considered systemic. However, Ford seems to have done well enough and if the PET scan shows no irregularities anywhere else, they will consider treatment just for the stomach area. She said that this would keep the lesion in check and hopefully prevent any trouble from perforation or other things.

However, if the PET scan shows anything suspicious indicating there is more than just the MALT lymphoma, then she will go back to the plan for stem cell transplant.

We are enjoying the good news from today and appreciating the good progress Ford has made since this time last year. Hoorah!!

INR

2010-01-19T10:55:00.001-07:00

Someone once told me that even the smallest increment forward is still progress.

The INR result for Ford this morning was 1.8. A small increase from last week, yet still an increase.

We'll take it and be happy.

In the Right Direction

2010-01-14T08:43:00.003-07:00

Ford had his INR checked on Tuesday morning. It had improved from a 1.5 to a 1.7. That is in the right direction and we are encouraged. He is to continue with his dose of 10 ml of coumadin three times a week with 7.5 ml. the rest of the time. Ford is also willing to keep taking the "natural" stuff we added to see if it would improve his levels. Although it has a reputation for tasting nasty, if it helps...it beats many of the alternatives.

The More You Learn...

2010-01-09T07:23:00.004-07:00

Somewhere in the educational process I remember a teacher telling the class that the more you learn, the more you find out how much more there is to learn. (It may have been as simple as the more you know the more you find out how much you don't know. Pretty much the same thing.)

For the past several INR checks for Ford (checking the clotting rate while on Coumadin), his numbers have been decreasing. The numbers need to be between a 2 and a 2.5 and his has dropped to a 1.5.

As this has happened, the light bulb has come on and I realize that this is what Dr. Alward meant using the term Coumadin Failure.

If I am understanding correctly, blood thinners are all a form of heparin. I have read that there are many types of blood thinners (many more than I realized) and Coumadin seems to be the most common used, partly because of low costs. The low-molcular-weight heparins like Lovenox are much more costly. The success/failure rate of heparins is individual, depending on various factors of medical conditions.

People that have cancer have a higher risk of blood clots and the medicine used in cancer therapy increases that risk. Coumadin is not always the heparin that works in these cases. That is part of what makes Ford a candidate for Coumadin failure.

Monday, 4 January 2010, Ford's INR was 1.5. His dosage of Coumadin was increased to 10 ml and his INR was checked again yesterday, Friday. It was 1.5. No change. He will be rechecked on Tuesday.

We are making an adjustment in his diet to see if that will make a difference. There is much to read and understand about how much diet makes a difference. We are also fortunate to have friends with training and experience in this area that can give us some valuable suggestions.

Other than the Coumadin issue, Ford seems to be doing quite well. The ice and snow has limited his biking for the time being. Actually it is the low, low temperatures that have hindered him. He has accepted that temps below 20 degrees just might not be good for skin, i.e. frostbite. The poor air quality in Utah County due to inversions also is a deterrent. Salt Lake and Utah Counties have alternated as having the worst air quality in the USA. I find that fairly amazing considering air conditions in places like LA and other big cities with habitual smog. News reports explain that the particulates in this pollution can embed themselves in the lungs and create severe health problems, some which can surface years later, especially in children. That is a might frightening.

Anyway...Ford is doing well. His next check at the Huntsman is 21 January 2010. This will be blood tests only. If something unusual shows in his blood levels, then more tests will be done.

Results will be posted. Until next time...

Catching Up

2009-12-04T10:46:00.004-07:00

Catching up:
Ford has been able to transition from Lovenox (daily injections) to Coumadin (oral tablet) successfully. It took a while to build up in his system. The first check 2 days after beginning to take Coumadin, his INR was at a 1.2 (the nurse said "that is a like-not-even-there number") so he had to continue the injections. The level needs to be a minimum of 2 to stop. Two days later it had increased to a 1.3. On Friday it had jumped to a 1.7 and we only had one more needle of the Lovenox (they are very expensive and we were hoping not to have to buy more if it could be avoided). The nurse consulted with Dr. Alward and they agreed to take a chance that the level would be up where it needed to be by Monday. If it wasn't high enough, they would write a prescription for what we needed. So Ford took the last injection on Saturday, none on Sunday, and tested on Monday. Hooray!! The levels were where they needed to be. It should be noted here that Ford actually gave himself the last 3 injections because I came down with the flu Wednesday night (I let down my guard and didn't get enough sleep for a few days and went 2 days without eating properly. It zapped me!). I supervised the first time from a distance. He did marvelously well, of course. He took inspiration from our oldest daughter who has had to take Lovenox injections during her pregnancy (she inherited her dad's Factor V Leiden). She has successfully (and cheerfully) given herself the injections for several weeks.

I believe that I mentioned in the previous blog entry that Dr. Alward told Ford that he is a Coumadin "lifer" now. Most likely, he will need some type of blood thinner for the rest of his life. The reason that a new drug coming out that may be more effective is important is that Dr. Alward also told Ford that he was at a higher risk for Coumadin failure. In other words, it is possible for Ford to get clots even if he is on the Coumadin. We will take each day at it comes and see what happens.

We had a very good Thanksgiving and hope each of you did also. As I mentioned before, we have simplified much of what we will do for Christmas. I have hopes of mailing out greetings for a Merry Christmas, but in reality, some of you may be receiving them in January and even for Ground Hog Day or Valentine's. (-: There is the distinct possibility that our good wishes go out electronically this year via blog, email, or telephone. Please know that the love and good wishes are very sincere to all of you no matter how you receive them!

Three Days Out of the Norm

2009-11-13T11:57:00.004-07:00

Time to update.

Tuesday was blood draw day. The lab results were frankly quite surprising. His sodium had dropped another point and his WBC, RBC, and hematocrit levels were all low. Definitely not what we were expecting or hoping for. (Oh, and his CO2 levels were high which indicates dehydration. This has always been a mystery because of his high amount of fluid intake. Go figure.) We got an email off to the nurse at HCI, but I am sure because Tuesdays are immensely busy for them, we did not hear back.

On Wednesday morning, Ford woke up with a fierce headache, body aches, and a slight temperature. My heart sank and the dread began. I prayed that he was not coming down with the flu, especially H1N1. This time I called our nurse at HCI. She was with patients and another assistant took the message. As Ford's fever began to rise, I sent another email. Then I began to do my own remedying.

Many who read this may poo-poo the idea of homeopathic, naturopathic, and "grandma's" remedies (even Ford sometimes calls it "witch doctoring"). With the direction health care, insurance, and pharmaceuticals are heading, someday all of these may not seem as foolish or ineffective. I could editorialize quite a bit on this topic, however, I will refrain and continue with the update.

After the first few things we did, his fever began to subside and his headache started to ease up. Then after another hour or so, the body aches were gone. His temperature remained stable most of the rest of the day.

The nurse at HCI got back with us and we kept in touch throughout the day to watch his progress. Nurse Debbi really is remarkable! She was good enough to give me the reassurance that I needed at the time.

Except for being tired, Ford seems to have recovered from whatever it was that was going on. It may have been a mild virus. Or it may have been from the lower sodium levels. It may even have been a lack of sufficient water intake and soreness from an over-aggressive Frisbee workout the day before. Nevertheless, we cleaned and sprayed around to try and keep germs at a minimum.

Yesterday was Ford's appointment with the pulmonologist, Dr. Alward. I enjoy the visits with Dr. Alward. He always wears shirts that make a statement, definitely not the normal standard issue for doctors. It's great and makes me smile. Dr. Alward is a pull-no-punches type of person. He tells things straight out and seldom leaves us guessing about the situation. He checked Ford out and reviewed what has gone on from the beginning of Ford's blood clots. He told us that with the Factor V Leiden issue and history, Ford has a 7-fold increase for blood clots over the normal person. With his history, he also is at greater risk for Coumadin failure, i.e. having blood clots even though he is on the blood thinner. With that said, Dr. Alward recommended that Ford begin taking Coumadin and when his INR levels are within the right range, he can stop receiving the daily Lovenox injections. Neither one of us will be sorry to see that daily routine go! And Coumadin is quite a bit less expensive than the Lovenox. Dr. Glenn at HCI gave her approval with that recommendation so Ford will begin that transition today. Hoorah! Also, instead of the weekly blood draw, he will need to have his INR checked (a finger prick) every few days until the INR is okay and then it goes to weekly, then spaces out from there. Because both of us are now on Coumadin, we asked about a home testing INR kit, but Dr. Alward nixed that idea. Too bad. Dr. Alward also told us that there is a new medication that has been used outside the USA for three years now that is having better results with less monitoring necessary. No info on how long it will be before it will be used here.

Ford stayed home again today just to give himself enough recovery time. He has pushed himself quite a bit after his chemo treatments to keep a full day at work and to get his physical activity level up to par and keep it there. In my meager opinion, he needed the break.

Other than all of this, all is well. We are greatly blessed!

November Update

2009-11-03T13:14:00.004-07:00

As Ford's health has improved, so has his activity level which means that we haven't posted as much as we have in the past. So just to bring things up-to-date, here is some of what has happened and is happening...

Each week since the 17th of March 2009, Ford has had a blood draw in order to keep tabs on what his body is doing. Except for the weeks that he has had appointments up at the Huntsman Cancer Institute, those labs have been done at the Intermountain Health Care Lab next to Utah Valley Regional Health Center. This means that we have gone in every week for almost 8 months. The patient service people, the dear phlebotomists, and even the volunteers have come to know us by name and by sight. Each one has been wonderful to us. They have endeared themselves to us and we are appreciative and grateful to them.

Each week we make two trips to the lab. The first is to take the blood test. The second is to retrieve the results in order to see, as Ford puts it, " if I passed the test." Each week there have been H's and L's beside some name and number indicating that his levels in that area are either high or low. Many weeks this have varied as to what was out of the normal range. Most always it has been the WBC (white blood cells), the sodium levels, and the CO2 levels (which indicate dehydration). Sometimes it has been bilirubin, RBC (red blood cells), lymphocytes, or a variety of other things. Last week all of the levels were in the normal range! What a great surprise!!

Within two weeks (actually 9 days and believe me, we are indeed counting), Ford will return to the pulmonologist to make a decision whether to make the change to coumadin, thus ending the daily Lovenox injections in the stomach, or whether to take him off blood thinners altogether. This will be another big step toward his recovery. Hurrah!!!

Ford has been able to ride his trike to work the past few days and will continue to ride as long as the weather holds out.

His brain processing ability is a little challenging to him still, but I see improvements a little at a time. Chemo brain is one of the negative effects that he has experienced.

At work and at his Temple assignment, he has been given challenges that have pushed his capacity and this is good.

For Halloween, we treated ourselves and went shopping for some much needed clothing for Ford. Along the way we did some Christmas shopping. With the bit of shopping I had already completed, we are almost done with Christmas shopping. We have simplified in so many ways and our daughters have made it very easy on us. For the past few years, the two older daughters, with their spouses, have decided to ask for gifts that help them in their emergency preparedness. Our youngest has been very modest in her requests. They all have let us know far in advance what is on their "wish lists" and this allows us to budget much better. We have made some of the gifts we exchange standard traditions. One family has prepared photo calendars with pictures of different family members for each month. We also have received beautiful photo books of our first granddaughter with pictures from the whole year. And, we carry on a tradition that Nannie and Poohpa blessed our own daughters with which is princess dresses for the granddaughters. We had one to buy last year, we have two for this year, and next Christmas, it will increase to three. That is very exciting and we feel greatly blessed for this opportunity.

Our family loves games and there seems to be at the very least, one game given to someone. Last year's favorites turned out to be Robo Rally and Bohnanza (fondly called The Bean Game). Each of our families have our own collections and we really enjoy getting together to play. There is definitely a great variety to choose from.

In the coming weeks, we will have the opportunity to be with a lot of family and friends. We have a nephew coming from Texas to enter the Missionary Training Center. Ford's sister and her husband will be accompanying him. We also have a nephew coming home from a mission to the Phillipines. One of my college roommates is coming from California to bring her daughter to SLC for a medical visit and will stay over for a couple of days. And our newest granddaughter will be blessed in a couple of weeks. Oh, and of course, there is Thanksgiving.
I believe that Thanksgiving and the 4th of July are two times of the year that rank at the top as favorites for me.

That's all for now. Looking forward to hearing from many of you as throughout the holiday season from now to the new year. WOW! is it ever coming fast!

The Results Are In

2009-10-15T16:42:00.004-06:00

"Enjoy the holidays!" was the parting remark from Dr. Glenn this afternoon.

The results of the endoscopy showed a bit of irritation at the top of the stomach so Dr. Boyton, the gastroenterologist, took several biopsies of the area along with biopsies from the area previously infected with cancer.

The PET scan showed a bit of increased activity in the stomach in different areas.

The opinion of all involved in diagnosing is that the only lymphoma that is active is the MALT. Currently there is no sign of the Diffuse Large B Cell Lymphoma, the more aggressive form that was the target of the chemo treatments.

The results of the bone marrow biopsies done in July showed no cancer cells in the bones.

Lab results on blood tests showed nothing out of the ordinary.

The plan from here is for Ford to be seen again in three months with a check up and assessment of how he has done. Then in six months will be the next check at which time another PET scan will be done. As long as nothing appears abnormal, that will be the plan for a while. If something seems out of the ordinary, then it will be determined if an endoscopy needs to be done.

Now we just need to find a way to curb the MALT. Dr. Glenn told us that if the MALT had been localized in just one area, it could be killed with radiation. But in Ford's case, it has been in several areas and is considered to be systemic. So he needs to be super aware of any changes. (Fatigue, vomiting, bleeding, pain, and weight loss.)

We are so very grateful for all the prayers and support. This is indeed great news for us!

Schedule Change

2009-10-15T07:11:00.008-06:00

Tuesday was pretty busy for the first half of the day.

We started out by me going to the Coumadin clinic and checking my INR levels. I already knew that they were down. I found that out at in the ER on Sunday. The surprising thing to the nurse in the clinic is that no one made the adjustment in my dosage at the hospital. I had called and left a message on Monday, but the phones were messed up in the clinic, as were the computers. The important thing is that the adjustments have now been made.

After the Coumadin clinic, it was over to the lab at IHC for Ford's weekly blood draw. Since we have been going there almost every week for about eight months, most everyone says hello to us and wishes Ford well. The lab techs are excellent.

Then we headed up to SLC and the Huntsman Cancer Institute for Ford's PET scan.
The PET scan went well. It just takes a long time. It is about a three hour test with the first hour spent getting the IV connected and letting the dye do its thing.

When Ford was done, we took our chances and went over to see the scheduler (A'lisha) for Dr. Glenn and asked if there were any openings earlier than next Tuesday. She right off said that she doubted it, but as she scanned her computer found an opening on Thursday, early afternoon. We took it. So we go today to find out the results of Ford's tests.

Since this seems to be the week to spend at different doctors and clinics, Ford will also stop in this morning to see his dermatologist. Apparently, Ford's risk of having melanoma increases after having the lymphoma and chemo, so this is a routine check to make sure nothing new has come up.

We will post the results of what we find out today when we can.

“How might we have joy in our lives, despite all that we may face? Again from the scriptures: ‘Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you.’ ”

Thomas S. Monson, “Be of Good Cheer,” Ensign, May 2009, 89.

One Procedure Done

2009-10-12T23:01:00.004-06:00

The first procedure is done and out of the way. Traffic into SLC was a bear this morning. Two major accidents and a couple of minor ones had traffic pretty backed up. Plus there was some debris on the road that I could not avoid and I worried all the rest of the way up to the U of U Med Center that something might be damaged. It turned out okay (just like Ford kept reassuring me that it would).

The IV was a little hard getting threaded this morning. It is sort of a conundrum that being well hydrated makes finding veins easier, yet, of course, for this type of procedure one has to be fasting for at least 12 hours before hand, thus creating dehydration. With a warm towel over his arm, moving the position of his arm, and calling in a nurse that seems to be an expert at placing IV's, things worked out.

The whole process beginning to end took about an hour and 45 minutes. In recovery, Ford was more alert and awake than he has been when the procedure was done in Provo. And they didn't let him lollygag around. They got him up and going, told him to get dressed, and we wheeled him to the car in a wheelchair (he was still a bit unsteady on his feet). He did begin having chills and it took a while to get him warmed up once we got into the car with the heater turned on high.

The one other thing that took me a while to realize was happening was an apparent reaction to the sedatives that Ford had been given. His nose began to run and he began sneezing. By the time we arrived home, he had begun to itch. As soon as we got into the house, he took some allergy medicine and then laid down to take a nap. This helped quite a bit.

We called the U of U Med Center and spoke with the nurse in charge. She was curious what meds Ford had been given at the Central Utah Clinic Surgical Center for his previous EGD. When I was allowed into the recovery area after the previous procedure, Ford's arms had large red blotches on them from wrist to elbow. At that time, the speculation was that he was having an histamine reaction. We called the Central Utah Clinic and a wonderful nurse looked up Ford's record. The common narcotic given for both procedures turns out to be Propofol. Looks like we get to add a sensitivity to Ford's medical records.

He is doing well this evening, but looking forward to a good night's sleep.

Tomorrow he is scheduled for a PET scan. This is scheduled a little later than today's procedure was, so we are hoping for better traffic conditions. I'm a real wimp on the roads. I'm praying that the storms predicted for tomorrow either pass us up or aren't very severe. Brrr. I feel winter coming on.

More updates as news happens.

Three Month Check

2009-10-08T18:15:00.008-06:00

Well, the fun is about to begin once again. This week Ford has a long-overdue dental appointment. On Monday, 10/12/09, he has an appointment up at the U of U Med Center for his EGD (endoscopy) where they will scope his stomach to see if there is any visible change and also do a biopsy to check which, if any, cancer cells are present in his stomach. Then on Tuesday, 10/13/09, we travel back up to the Huntsman Cancer Institute for a PET scan. This is to check if there are any "hot spots" that are taking up the radioactive sugar. Our appointment with the oncologist, Dr. Glenn, will be the following Tuesday, 10/20/09, to get the results of all the tests.

This will not be an easy week for us. I've been trying to prepare myself for the wait and whatever the results may be, but the tension is already mounting and my emotions are beginning to bounce off the walls. There is a lot to be done around the house, so maybe some of that craziness can be dispersed doing chores. Since it looks like winter is on our doorstep, there are some winterization things that need doing. Brrr. I am missing the warm weather already.

Ford has been driving to work the past several weeks. During his lunch time is when he has typically worked out by playing frisbee. He had two new personal bests the past two weeks. He had thirty-two consecutive throws and catches with three frisbees and either one or two frisbees in the air at all times. Today he consistently had three frisbees in the air for eight throws and eight catches! This is a great achievement. He not only gets a physical workout, but also is sharpening his brain, coordination, and concentration skills. HOORAY for Ford!!!!

We have had great support throughout this whole year's experiences. Please, if you will, remember Ford in your prayers in the next coming weeks. We are hoping with all our hearts that his tests come up clear.

Love to all!

Time to Catch Up

2009-09-24T07:59:00.005-06:00

Our newest granddaughter has arrived! She was born last Thursday, 17 September 2009. She is healthy and beautiful, of course. Our daughter and son-in-law decided on a home birth with a nurse midwife (and her assistant). They all worked together and things went well. Mother and father are doing great. I am limiting details due to the lack of security of the internet and the fact that this is an open blog. But we are so excited for this little family. Ask us details anytime and we will oblige with more gushing than you will probably want to endure. =}

Ford is doing well, also. He is working full days, riding his recumbent tricycle to and from work, working out most days at noon with his frisbees, and back to full service in his Temple responsibilities. He is looking really good.

Follow-up tests begin 12 October 2009 with an EGD (endoscopy). We are waiting to hear when the PET scan is scheduled, but we are guessing that it will be between the 16th & 19th of October. Ford's appointment with Dr. Glenn is 20 October 2009. We are praying and hoping that all news is good.

We received a surprise on Monday. It was found that I have a DVT (Deep Vein Thrombosis, ie., blood clot) behind my right knee. And then found that I also have a PE (Pulmonary Embolism, ie., blood clot in the lung) in my right lung. There is evidently no sure way to determine how long I have had these, but the estimate is about two weeks. The good news is that I am receiving good treatment to resolve the situation. I did have a room with a great view at UVRMC for about 15 hours. The staff of the ER, Radiology, and 7th floor were excellent!! I have been treated very well.

Ford is kind and attentive. He is a good caregiver. Now we get to give each other daily Lovenox injections (he gets double duty giving me 2xdaily). He has a nice touch and I appreciate that he seeks no retribution.

I am really quite unsure why our lives have been so eventful, but am very grateful for the enormous amount of blessings we are receiving. We appreciate all the love and support.

Ford's B-day

2009-09-08T21:17:00.004-06:00

Today is Ford's 55th birthday! We are so grateful that he is healthy and alive to celebrate. This morning we were in Yellowstone. Tonight we are back in Provo. We stopped in Rexburg midday to drop off our youngest daughter for her second year at BYU-Idaho.

We spent four days in Yellowstone. It was a much needed and enjoyed vacation. We will elaborate a little more during the next few days. For now, suffice it to say, God has created a very beautiful world!

P.S. And tomorrow we might, just maybe, have a new grandchild.

Life is good.

A New Week

2009-08-31T09:54:00.005-06:00

New week and new post.

The visit with the pulmonologist went well. He thought Ford looked very good (he really does look amazingly well). There is not anything that can change with the blood thinners until Ford has his tests done in October. If all is still looking good, then there will be discussion of switching to Coumadin (taken orally), remaining on Lovenox (daily injections), or not taking anything. Dr. Alward believes that the chemo was the main cause of the double pulmonary embolisms. This is consistent with our understanding of what happens with someone who has Factor V Leiden. There is usually something that perpetuates the blood clots. They rarely just happen. That is the news there.

Today was the first day that Ford has been back on his trike (three-wheeled recumbent bike). He has looked forward to being able to getting back to riding. Today is also the first day of regular classes at BYU. He was able to time it so that he missed the first period rush and breezed right in to work. Yeah!

One of the speakers in our Ward Sacrament meeting yesterday spoke on change and coping (excellent talk Brother S. Thanks for the stories and the insight). This is definitely a season for change with twenty days or less before our second grandbaby arrives, and in a week, our third daughter is back to school at BYU-I. We have enjoyed having her home for the summer. We will miss her not being here, yet are excited for the new adventures that await her. With the progress Ford is making getting back into his work and areas of interest, it will be time for me to work on many things that need attention. One of the things that I have tried to learn from our experiences this year is to take one day at a time and to enjoy and appreciate life. And, so, we will see what each new day brings and try to learn what the Lord may have in store for us.

How blessed we are.

New News

2009-08-26T12:08:00.004-06:00

No blog for a while and now, two blogs in one day...

We made inquiries to the Huntsman "team" as to what the written lab results were. The response came back that the cancer in Ford's stomach that was found at the last endoscopy is the MALT lymphoma (the low grade, low progressing, non-curable lymphoma) and not the Diffuse Large B Cell lymphoma. If all goes well, PET scan and EGD will be repeated before Ford's October appointment.

HOORAY!! HOORAY!! Thank all you all (Southern speak meaning: everyone) for love, support, & prayers!!

Keeping Touch

2009-08-26T07:11:00.003-06:00

We haven't updated for a while because, as far as news about Ford's status medically, we do not know anything new. We can only hope that "no news is good news."

Some read our blog to be updated on Ford's lymphoma situation. We have been reminded that some read our blog to keep up on what is going on in general. So, this blog is for a general update.

Ford returned to work full-time last week at BYU. He has done well. He really does look good. His hair is coming back nicely and not all gray. There are dark areas here and there.

He has been building up his stamina. Every evening this past week, he has taken a long walk around the neighborhood. This seems to also have a calming effect that has allowed him to sleep a bit better.

On Saturdays, he has returned to his assignment at the Provo Temple. He goes every week hoping that he can stay for the full shift, but has been patient at taking it one step at a time and building up his time. He has a wonderful supervisor that keeps a loving eye on him. Ford is getting more skillful at finding things that need to be done at about the time Brother H. would like him to go home. (-:

Ford weight is remaining stable. He weighs more than he would like, but he looks good with the extra few pounds, not as gaunt (just gallant).

For a little bit, Ford was having a slight slow down processing things. That may have been due to lack of sleep, the chemo, or who-knows-what, but he is picking back up quite nicely.

Our second daughter is within 4 weeks of her due date. Our first daughter found out that baby #2, due in January, is a girl. Daughter #3 will be returning to school at BYU-I in a few weeks.

For those of you that are not in Utah, it seems that Fall is creeping in early this year. The past several days have been beautiful, but cooling off. I suppose that the leaves on the mountains will soon be changing their colors.

Today Ford has an appointment with the pulmonologist here in Provo. It is a check up and a chance to touch base concerning his blood thinning meds. Without any word from the Huntsman, there is nothing that can really change at this point.

Our best wishes go out to you all whether near of far. Take care.

Some More Info

2009-08-10T13:10:00.003-06:00

In the previous blog post, we told about the reprieve. After the doctor called, we decided to wait until the news was in writing before we talked about what was going on. It has been such an emotional roller coaster.

However, many people have asked so here is what little we know...

The pathologist as the HCI told Dr. Glenn over the phone that when they received the slides from the endoscopy and had examined them, that what they thought they were looking at was the MALT lymphoma (the slow progressing one) and not more of the Diffuse Large B Cell lymphoma (the aggressive, potentially fatal one).

Dr. Glenn cautioned us that sometimes the pathologist will surprise her and the written report will be different than the oral report. For this reason we need to make sure before we get too excited.

The only "for sure" is that because of the doubt of which lymphoma it is that is showing up in Ford's stomach, all of the procedures scheduled this week, i.e. central line placement, three day RICE chemo treatment, and the Neulasta shot on the fourth day, have been postponed. Dr. Glenn started to say, "...so we will wipe those off the agenda," but then stopped and said, "not wipe off, just put on the back burner."

She told us that they were also ordering all the original slides done for the original diagnosis and staging.

We are very relieved at the reprieve. It is what I imagine a stay of execution may feel like. But then Ford is continually telling everyone that I am taking this harder than he is. Ford is taking all in stride.

We are not sure when we will hear more about the diagnosis.

In the conversation with Dr. Glenn, it was asked if she wanted Ford to repeat the endoscopy. She said yes, but that she wanted to wait at least two months because that would give her a better picture of what is going on.

That is what we know and don't know.

Reprieve

2009-08-06T22:50:00.004-06:00

"Hope . . . is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear."

Dieter F. Uchtdorf, "The Infinite Power of Hope,"Ensign, Nov. 2008, 22.

Early this evening Ford received a phone call from Dr. Glenn, the oncologist, at the HCI. The gist of the conversation was that all procedures scheduled for next week have been postponed until further notice.

Once again, we will post more when we know more.

For now, we are ecstatic with the reprieve!

Please keep Ford in your prayers, that all those concerned with his care will be blessed to be precise and accurate in their research and their determinations.

The Upcoming Schedule of New Treatment

2009-08-05T08:27:00.016-06:00

"We can't predict all the struggles and storms in life, not even the ones just around the next corner, but as persons of faith and hope, we know beyond the shadow of any doubt that the gospel of Jesus Christ is true and the best is yet to come."

Elder L. Tom Perry

We have received a tentative schedule, however not much of any other information.

Ford will have a central line placed on Monday. This is a catheter that runs through a central vein directly into the heart. The purpose of the central line is to simplify many of the procedures that need to be done. We have been told that the catheter will connect to three lines that will be accessible for blood draws, infusions, and other necessary things. These will be covered at all times (when not in use) so they do not irritate Ford's chest. He calls it "becoming Borg" (a Star Trek reference). I have the opportunity to learn to change dressings and flush the lines so they do not become clogged. (Do they have an age limit to nursing school?) Every medical procedure has its risks. This is just one of the many hurdles that Ford will need to overcome in this whole mess of treatment. The central line can be removed after all the treatment is completed.

Bright and early Tuesday morning is the appointment to meet with the HCI oncologist, Dr. Glenn. We are planning that the chemo will begin after that.

One of the medications Ford will receive on the first day is Rituximab. This is referred to as a designer drug, because it targets a specific enzyme found on the surface of B cells that can be a flag for lymphoma.

He had this in the first round of chemo (R-CHOP). That is what the R stands for. On the first infusion, the Rituximab must be administered very slowly in order to watch for allergic reactions. It takes several hours. Even though he has had this drug before, we were told that the first infusion of this new series would have to start over. This means that on the Tuesday, it will take approximately six hours or so for the treatment. Then we will stay overnight in SLC (backdoor to the emergency services at the U of U Medical Center). On Wednesday, we call the Huntsman Hospital to find out when Ford checks in. Then it is a thirty-six hour stay with a IV drip of the other drugs. On Thursday afternoon, Ford should be released. On Friday, approximately 24 hours after the end of chemo, he goes back for the Neulasta shot. That will complete the first round of the new series.

If all goes well, we do it all again two weeks after that, with the first day of round 2 on the 25th of August.

Ford was told that this is a harder treatment with more powerful drugs. Because he has undergone chemo previously, it will be harder.

How hard is harder than harder? My mind cannot even comprehend what that might mean. Ultimately I take it to mean one day and one step at a time.

Once again our prayers will be focusing on asking that the drugs used in the treatment hit the cancer, but that every bit, every inch, every ounce of what is healthy in Ford's body be protected and preserved from any adverse effects. Please, whatever your belief or values may be, join us in pleading for that blessing for Ford.

We have soaked in the warmth of the associations we have been able to enjoy the past few weeks. How wonderful it has been to be able to attend Church on Sundays, be out in public, Ford being able to attend the Temple, and even having the opportunity to attend the funerals of our dear friends and neighbors and pay tribute to them (five have passed in the past few months, three in the past week).

We were gifted tickets to the Scera Outdoor Theater and enjoyed the production of Joseph and the Amazing Technicolor Dreamcoat. We are looking forward to the Annual Summer Ward Party this week also. We are figuratively filling our buckets to prepare for the coming weeks of isolation when Ford's white blood cell count will once again drop and his immunity goes to zero.

Thank you to everyone for the notes, emails, Facebook posts, hugs, calls, visits, and the ton of support! You all are awesome and we are truly blessed continually.

The Lost Is Found

2009-08-01T15:08:00.004-06:00

Yesterday afternoon a little after 4:30 pm we received news that the slides had finally arrives at the HCI and the pathologist would be able to examine them.

Also, we received the okay for treatment to wait until 11 August to begin.

We will hear sometime this coming week when Ford will have the port inserted and what stage the cancer is in and what our schedule will be.

So for now, we will enjoy the weekend and week to come, getting things done that need to be done before we begin to focus once again on whatever it takes to fight this battle with Ford's cancer.

Ford was able to go to the Temple for his weekly assignment for at least a couple of hours. He has a meeting early tomorrow morning. Oh! how he loves working in the Temple and associating with the workers. We appreciate the allowances that have been made to allow him to continue doing what he can, when he can. Thank you, Brother H., for your care and kindness.

We have both enjoyed being able to attend Church on Sunday. The association with our Ward family has been wonderful. We have received strength from the messages and lessons. We are sorrowful that four of our neighbors have passed away in the past two or three weeks, but are grateful for the knowledge of the Plan of Salvation. Each one has lived a good life and have been unique in their interests and accomplishments. They have done exceptional things and touched many people's lives. All of them have wonderful families. We pray that those left behind will feel loved and comforted and blessed with what they need at this time.

"No matter how bleak the chapter of our lives may look today, because of the life and sacrifice of Jesus Christ, we may hope and be assured that the ending of the book of our lives will exceed our grandest expectations. 'Eye hath not seen, nor ear heard, neither have entered into the heart of man, the things which God hath prepared for them that love him. ' "

Dieter F. Uchtdorf, "The Infinite Power of Hope," Ensign, Nov. 2008, 22-23.

What We Know So Far

2009-07-30T00:19:00.012-06:00

"There may be things in our character, in our behavior, or concerning our spiritual growth about which we need to counsel with Heavenly Father in morning prayer. After expressing appropriate thanks for blessings received, we plead for understanding, direction, and help to do the things we cannot do in our own strength alone."

David A. Bednar, "Pray Always," Ensign, Nov. 2008, 41.

The whole talk "Pray Always, by Elder Bednar, given in General Conference, Oct. 2008, has so much insight and counsel that can bless our lives. I have found so many parts that fit what is needed for Ford & me here and now. It is like the path is lighting up right before our next step.

Having said that, here is where we are today after the visit at the Huntsman Cancer Institute yesterday.

Dr. Glenn first told us when we arrived that because she had not received any reports, she evidently had not given the HCI pathologists enough time to review the slides from the endoscopy biopsy that were being sent from the lab in Texas. She did receive a copy of the written report that Dr. Bodily, the gastroenterologist in Provo had received. From that report, she told us that it appears that the suspicious cells found in the biopsies from Ford's stomach show Large B lymphoma cells like the ones that were initially diagnosed in January/February. The assumption is that these were those that did not fully respond to the R-CHOP chemo treatment. (The R-CHOP, of course, is an acronym for the meds used in this particular round of treatment.)

When the path lab called back to Dr. Glenn, the news was that the slides could not be located in their lab and the question asked "Could they have been directed to Dr. Glenn's office?" Already knowing that they were not in her area, Dr. Glenn let us know that the location of the slides are currently unknown and they were checking to see if they were actually sent from the Texas lab. As of this morning, the status of the slides are still in a state of flux.

The HCI pathologists need the slides, along with the results from the bone marrow biopsy (that was done later yesterday) in order to stage the cancer (what areas are affected and to what degree).

The bone marrow biopsy and aspiration was, to put it mildly, grueling.
When the Provo oncologist performed "the bone marrow biopsy" at the first of the year, the procedure took approximately 10 minutes start to finish with about 15 to 20 minutes of recovery time for Ford. It involved, to the best of my recollection, two needles: one to numb the area and one that was inserted into the bone for the biopsy. Some iodine at the beginning to sterilize the surface area of the skin at the hip and one simple bandage at the end over the site of the needle insertion.

The procedure at the HCI took approximately 75 minutes from start to finish with about 45 minutes of recovery time for Ford. The iodine at the beginning was the same. Instead of having him lay on his side during the procedure, they had him face down (that was a good thing). There were 4 or 5 needle insertions for numbing all the way down to the bone. I think there were 3 needles used to take marrow samples (I was giving full attention to Ford at this point--no pun intended--and I lost track). And one instrument used for the bone sample, smaller in diameter than a regular drinking straw (as I look around, it was more the diameter of the wire connecting my mouse to the computer). It was made of metal and once inserted, was twisted (screwed) into the bone to take a sample of the bone itself, similar to a geologist taking a soil sample of earth. It literally had to be "jiggled" from side to side to loosen it to be removed.

Then the site was cleaned and bandaged with a thick bandage and covered with Tegaderm (thin, clear sterile dressing that keeps out water, dirt and germs, yet lets skin breathe) that looks like a huge square patch of clear tape. (I thought the description was cool so I included it.)

The final part of the procedure was a finger poke in order to get three drops of blood for 28 slides. For a while, the site of the finger poke hurt more than anything else.

Ford was terrific. He began feeling a little sick to his stomach and began to sweat profusely after the 3rd injection of Lidocaine. The bedding and his shirt was soaked with in minutes. The MD and bio technician slowed things down and tended to Ford. They put a wet, cool cloth on the back of his neck. He began to recover pretty quickly and they continued with the procedure. I kept up a dialogue with Ford until he felt well enough that he began entertaining us all with his routine of jokes. He really is amazing. After the procedure was all over, the head nurse came in to check on Ford and answer questions. She noticed that he was bright red from his neck down his chest and abdomen. She kept close watch checking for an allergic reaction and finally decided that because it wasn't ever red around the site of the procedure, that it was a strange (can you believe that about Ford? --smile--) type of reaction due to the profuse sweating and the heat caused by the anesthetic. He also had begun to chill and to shiver. This created a bit of a conundrum in how to diffuse the heat reaction, but to bundle him to stop the chilling and shivering. It took a while, but Ford did well.

Once the staging is completed, and, if nothing is radically different this is a somewhat simplified overview of what the next protocol entails:

The next round of chemo treatment is RICE. The R in RICE is the same med as in R-CHOP. The ICE meds are more potent chemicals than the CHOP. The treatment is administered over 4 days. The first day of treatment is IV infusion, the R & E, done in the infusion area of HCI where Ford has had his other treatments. The second day of treatment Ford will be admitted into the Huntsman Cancer Hospital for minimum 36 hours. The I & C will be administered and Ford will be monitored by the hospital staff. He will be released the third day (after 36 hours). On the fourth day, he returns for the Neulasta injection.

So, 4 days of treatment given every 2 weeks for 3 or 4 treatments. The 4th treatment is given, if deemed necessary. After the last treatment, whichever it is, then the Transplant Team begins transition. Ford is then transitioned to prepare for an autologous (self-donated) stem cell transplant. He goes through a regimen to harvest his own stem cells. When the needed amount has been collected and frozen, then he undergoes a one-time radical chemo treatment of BEAM, plus either the R drug or a different one called Bexxar. After the BEAM, he then is hospitalized for a minimum of three weeks for the stem cell transplant and recovery. During the several days it takes to harvest the appropriate number of stem cells (calculated so many thousands needed per kilo of the patient), we have to remain within 30 minutes distance of the U of U hospital at all times.

If this does not seem like a simplified version, then you probably can realize how immense the detailed version is.

One detail: Ford will have a port inserted this time. This port will consist of a central line into the heart. There will be three lines that will be accessible for blood draws, infusions, transfusions, IV's, and transplants. The first time Dr. Glenn thought it was too dangerous given Ford's Factor V Leiden condition. When we asked what had changed, she said, "He is now on Lovenox." Okay, then.

We will update as we are updated.

P.S. I have been trying to complete this blog since early this AM and now this is the third time I have typed this blog. Earlier posts did not post. No clue why not.

Thoughts on Prayer

2009-07-28T07:26:00.003-06:00

Until we have more news to give, these are some "happy" thoughts about prayer:

"Morning and evening prayers—and all of the prayers in between—are not unrelated, discrete events; rather, they are linked together each day and across days, weeks, months, and even years."

"We are commanded to 'pray always' (2 Nephi 32:9; D&C 10:5; 90:24)—'vocally as well as in [our] heart[s]; . . . before the world as well as in secret, in public as well as in private' (D&C 19:28). I testify that prayer becomes more meaningful as we counsel with the Lord in all of our doings, as we express heartfelt gratitude, and as we pray for others with real intent and a sincere heart."I witness Heavenly Father lives and that He hears and answers every earnest prayer."

David A. Bednar, "Pray Always," Ensign, Nov. 2008, 42.

From One Who Knows

2009-07-26T11:07:00.001-06:00

"Learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at the time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others."

Joseph B. Wirthlin, "Come What May, and Love It, Ensign", Nov. 2008, 27.

"We're Back"

2009-07-23T22:38:00.002-06:00

Not exactly the news we would want especially heading into a holiday, but it is what it is.

Nurse Debbi called from the Huntsman this evening to tell us that the reports from the endoscopy biopsies show that (and I quote) "It is back."

Whether the cancer is actually back or whether this is some that wasn't killed before is probably irrelevant. The point is that on Wednesday, 29 July, we go back to the oncologist at the Huntsman and talk about what is going on and what to do next. Ford will also have another bone marrow biopsy done to see if there is any cancer in his bone marrow.

The nurse indicated that there will probably be another round of more radical chemo. Stem cells will be taken from Ford's bone marrow and frozen for future use, if needed. This is called an Autologous bone marrow transplant. "Auto" means "self." Stem cells are taken from the patient before the patient gets chemotherapy or radiation treatment. When chemotherapy or radiation is done, the patient gets their stem cells back. This is called a "rescue" transplant.

The slides with the biopsies from the endoscopy are being shipped to the pathologists at the Huntsman Institute and they will determine what is happening. We will be able to meet with the oncologist, hear what she has to say, ask any questions we have, and then go from there.

Bottom line: Please continue to include us in your prayers. Thanks ever so much! And...Happy Pioneer Day and weekend!!

Not All Good News...

2009-07-21T19:35:00.003-06:00

Not all good news coming from the endoscopy.

The gastroenterologist called this afternoon. Said he was on his way out of town and stopped to check paperwork on his desk. The reports coming back on the biopsies showed some suspicious cells. He will forward the reports to the oncologist at the Huntsman. He apologized that news wasn't better.

We will wait to hear what comes next.

Revision and update

2009-07-19T09:03:00.003-06:00

One reason not to blog while tired is that the information may not be processed quite as accurately as could be. Because of this, the post Drumroll, Please has been edited with a bit more accuracy concerning the PET CT results. The outcome is still the same overall: Good.

As for what is currently happening, Ford was not able to make it to the Temple yesterday. With the endoscopy the day before and less hours of sleep during the night, he was a bit drained of energy. He began to perk up a bit during the afternoon-evening enough to help with a gardening chore and do some dishes that have piled up.

Today the goal is to attend Sacrament Meeting. We will come home after that and if he is feeling up to it, he will try to attend his Priesthood meeting. Little by little he will make it back to a regular routine. He has done well at trying to listen to his body and then respond accordingly. For someone that has had relatively little illness or restriction most of his life, he is doing very well.

Procedure Report

2009-07-17T13:26:00.003-06:00

"Everything looks great!" said the doctor as he walked into our recovery area. "The ulcer is gone." And along with some other details indicated that the results of the various biopsies he took would be back in about one week. We will receive a call from his office.

Ford is currently at home sleeping off the medications. He was able to have some soup and a sandwich and will probably be asleep most of the afternoon.

He had hoped to be able to be in the Provo Temple tomorrow. We will see what the morning brings.

PS: The doctor was a lot more animated and willing to talk today than he was after the first procedure back in January. (-:

Sooner Than Expected

2009-07-16T23:12:00.004-06:00

Tomorrow morning Ford will have the endoscopy that Dr. Glenn wanted done. The gastroenterologist had a cancellation and so was able to get Ford in right away. This has taken us a little by surprise. Ford had intended to go in to work for a few hours in the afternoon for the rest of the week. He did go to work yesterday for about 4 hours and came home totally exhausted. He thought he was doing okay while at work, but really felt differently when he got home. Consequently, he was too tired to go to sleep at an early hour and did not get a lot of sleep. Today he took it easy and was able to rest some.

Things were a little lively in the morning with a visit from our daughters and granddaughter. Whoa, what energy!!

I am sure that the results of the biopsy(ies) will take some time to get back, but I will update tomorrow on how Ford is doing.

Drumroll, Please...

2009-07-15T06:39:00.004-06:00

This is an edited version--7/19/09-- from the info previously posted.

Yesterday Ford had his appointment with Dr. Glenn, the oncologist that has been treating him at the Huntsman Cancer Institute to determine if the 6 chemo treatments were enough or if he would need to receive more.

She checked him over, asked him question, and then talked about the results of the PET scan taken on Saturday and his current lab results.

It appears that the chemo treatments were successful and Ford will not have to receive any more treatments.

He will need to have another endoscopy to get biopsies and allow an actual visual look at what the stomach looks like compared to when he was first diagnosed with cancer. We anticipate that procedure will take place in the next week or two. We are waiting to hear back from that specific doctor's office to schedule the appointment.

The oncologist focused on two main areas of concern, the lungs and the stomach. From the copy of the PET CT report we received, this is basically what has happened:

The swollen lymph nodes are no longer swollen. The density seen in the lungs has significantly reduced with many of the nodules gone.
There was a nodule in the right lower lobe of the lung. It used to measure 2.5 cm and has now been reduced to 11 mm. In the left lower lobe there was a density measuring 2.5 cm that is now 12 x 7 mm.

The stomach wall had a thickening of 2.0 and now measures 16 mm.

The liver, spleen, pancreas, and adrenal glands are normal, as are the kidneys. There was no sugar uptake in the bone tissues.

There were more areas affected than we were or have been aware of, however, these seem to have been resolved.

If the biopsies come back with good news, then Ford will officially been in the recovery phase, no longer a patient, but a survivor of the Diffuse Large B cell lymphoma!

The MALT lymphoma, as the doctor stated, is still somewhere in his body, but has presumably been "beaten back" with the chemo treatment. We will need to be vigilant and watchful to any changes in the future.

What happens now? Ford has been advised to pace himself. Do not take on too much at once. Start resuming activities, yet be cautious not to overdo or overwhelm. His body will take some time to recover from what it has been through. Some of the effects of the chemo may take more than a year to clear through his body. His body is also recovering from the effects of hyponatremia, aspiration pneumonia, blood clots, and an enormous amount of medications. Although Ford is able to get a lot more sleep lately, he wakes up exhausted. My personal opinion is that there is also a physical and mental "let down" from the stress of the past 6 months.

He will have to tune in to what is happening and respond accordingly. One pattern has become clear, that if he doesn't take a break or a rest when he needs to during the day, he gets overly tired. Then he doesn't sleep at night and it becomes a vicious cycle of exhaustion. This past week he has been good about laying down for a while a couple of times a day. It seems to have served him well because he has been able to get many more hours of continuous sleep.

The lab results from yesterday were showing great improvement. The doctor indicated that he was anemic, which is normal at this stage, and that he would improve with time. His WBC count is climbing and is actually in the normal range for the first time in many months. The other levels are returning to normal ranges.

Ford is scheduled to return for his next PET scan in three months (October). If everything looks good, then for the next appointment (three months later), the doctor will determine if a regular CT scan will suffice. CT scans are less radioactive than PET scans.

At the end of August, Ford will see the pulmonologist, Dr. Alward, to determine what course to take with blood thinners. At this point, the doctor and Ford determine whether he should remain on blood thinners and switch to Coumadin (an oral med vs. the daily shots in the stomach) or risk no meds and future blood clots. With blood clots having actually reached the lungs, we are guessing that the risks are too high not to take the meds from now on. We will see.

Thank you, again, for the prayers, love, and support. They have yielded miracles.

Some have expressed apologies for not visiting, sending cards, or contacting us more. If all you have been able to do was to include us in your prayers and thoughts and hearts, please know how immensely important that has been to us. It has been enough.

The Schedule

2009-07-10T19:13:00.002-06:00

Tomorrow at 7 am Ford is scheduled to have a PET scan. This is about a three hour procedure. Then early Tuesday afternoon, is his appointment with the oncologist. At that time we suppose that we will find out if Ford is done with chemo or if there is more to be done.

Slowly, slowly...

2009-07-08T16:35:00.002-06:00

Slowly, slowly the count goes up. The lab results yesterday showed that Ford's WBC count went from a 1.2 to a 1.9. At this rate, he may be back within the normal range in 2 1/2 weeks.

Other areas that have either been H-igh or L-ow are leveling out and are nearly back to normal ranges.

Ford is able to sleep most nights, but when he can't he spends time programming (one of the several advantages to working from home).

He has been able to increase his exercise on the stationary recumbent bike, yet recognizes that his endurance is not even close to where it used to be.

Saturday evening we were able to have a small get-together with 3 daughters, 2 sons-in-law, and one grandchild. It was good to be able to celebrate the 4th with a family gathering. The high point of the event was when our granddaughter appeared and stood in front of us wearing her new T-shirt that had printed on it: "I'm going to be a big sister."
That really got the party going! So by the end of January 2010, we will have 3 grandchildren to love and spoil.

The blessings just keep coming.

2009-07-01T09:00:00.002-06:00

Disappointment all around today. As Ford terms it, "I flunked my blood test today."

Typically, the week after a chemo treatment his labs come back with a low WBC count. Since he began taking the Neulasta shot after chemo this count has been very low (in critical range). Then the count bottoms out two days later and begins to climb quickly.

Last Tuesday (7 days after chemo) his WBC count wasn't as low as we've seen (2.5). Of course, it would have gone a little lower by Thursday and then started to climb. By the second Tuesday, the count has usually been close enough to normal. We had expected it to be in or at least near the normal range, which, to us, meant that he could be involved in activities around other people because he would have a higher immunity if coming in contact with some kind of illness. We were confidant enough that this would be the case that Ford was dressed and ready to go in to his office at BYU to attend a mandatory meeting right after we picked up the test results. We so confidant that we were planning (and looking forward to) an outing at a park to play with family today. Ford and I were both stunned to see the results.

WBC = L 1.2 critical value

He ended up not going to the mandatory meeting. He broke the news to the family and postponed the outing to the park.

The email that came back from the HCI nurse was a confirmation from the doctor that because of the change in not taking the Neulasta shot, the WBC would bottom out between days 10-14 and then would begin to improve, but at a slower rate than we had seen before. Yesterday was day 14.

Disappointment and frustration. There is no other way to describe it. This too shall pass and things will begin to improve. But with the 4th of July coming this weekend and family here from out-of-town, we were looking forward to getting out and playing. Now we will wait and see. Bleh! (And why is patience a virtue?)

Today's News

2009-06-25T09:51:00.002-06:00

Ford is looking good and things are starting to even out a bit. The lab results on Tuesday looked good. The WBC count was low but didn't bottom out as it has the previous two cycles. Sunday was a great day in Ford's opinion because the liquid restriction was lifted. He has been able to drink more liquids and will be very happy when the water restriction is changed. His sodium levels look great.

Ford has been good about not pushing a set schedule so much. He has been able to sleep a few more hours and has even tried laying down for a nap occasionally.

His appetite is good and his weight is normalizing.

He is able to get work done and has great co-workers helping to make the at-home option work smoothly.

On the whole, everything is going great with Ford's progress.

Father's Day

2009-06-21T16:47:00.003-06:00

Happy Father's Day!

Yesterday was the last dose of Prednisone so today Ford is trying to get some sleep. We tried several different things this round to see if we could increase his ability to sleep. Some worked for a few hours, but nothing worked for a full night of sleep. Because Ford could be more susceptible to infection this time around, we haven't tried any prescription strength sleep medicine just so he is able to communicate what is happening if anything changes.

Our second daughter and husband stopped by for a little visit and brought Ford two presents. The first was a tie. Can anyone guess what color it is? (-: The second was a T-shirt which on the front has "DAD" in large lettering, then the word "Built" followed by the FORD logo and the word "Tough." Pretty cool, huh!

As a Father's Day tradition in our church Ward, the men meet outside at the pavilion after the block of meetings and the young men (ages 12-18) serve a desert to the fathers. Ford would have liked to have gone especially when he learned that it was Marvell's Strawberry Shortcake that was served. (The Marvell's are caterers that live in our neighborhood and are always very generous with their talents!)

Right now things are quiet. Hopefully sleep schedules will be back on course very soon.

Graduation Day at HCI

2009-06-18T10:19:00.004-06:00

Time to catch up on the events of Tuesday.

It was a bit strange to have a late morning appointment at the HCI. Usually we would be on the way up to SLC bright and early. Instead we had a bit of reprieve and a lot of mixed emotions. Ford anticipated that this would be the final treatment because that is what was laid out as to what the plan of action would be, 6 treatments of chemo every three weeks, if all went normally. Since there have been several bumps in the road and a few delays, I have always, figuratively, held my breath on days like this.

Arriving later in the morning, there were a lot more people than normal at the HCI coming and going. We went through the routine prelims of checking in, getting the IV inserted and labs drawn, the weigh in with all the vitals checked. Then we waited. Dr. Glenn, we knew, would not be seeing us today. She was on vacation (much needed, we're sure). Dr. Pollack, the Fellow, would be seeing us solo. He is quite pleasant, knowledgeable, and explains things quite thoroughly, even with illustrations if necessary. He was running just a bit behind schedule, but not much. He asked all the usual questions about anything unusual, any pain, and so on. He gave Ford a good checking over, reviewed the course of treatment, outlined what the schedule would be for the next month, answered questions, and took the joke/riddle/pun of the visit (Ford has made it a practice to take something each visit for some grins). This one was supplied by our youngest daughter: "The name Pavlov--does it ring a bell?"

After all that, we heard the words we anticipated: "Well, this is the last treatment."

No Neulasta injection this time, so we need to be alert to any fever. Next day follow-up labs will be okay to be drawn at UVRMC with a copy to him. Then he shook our hands and told us if we were ever in North Carolina to look him up. His Fellowship ends in two weeks and he is off to practice on his own. Congrats and thanks, Dr. P.!

Ford was delighted when once again in the Infusion Suite they told him that the chairs were all occupied and he would need to have a bed. He slept through a major portion of the chemo treatment. There were a few abnormalities, but nothing that the wonderful nurse couldn't figure out. The last few treatments seem to hit Ford a little harder. He is more pale and more tired. This time he got the off-taste in his mouth during treatment and nothing tasted very good to him. For me, the time seemed to pass very quickly. Just before 5:00 pm, the final flush was done, the machine alarm sounded, and the whole nursing crew from the Infusion Suite gathered around and "graduated" Ford. They sang a song that they sing heralding the end of chemo and they gave Ford a certificate of completion and also a blanket that was made by volunteers. It was really a great moment. Then they gave hugs, well wishes, and good byes. They are very wonderful people.

I asked the nurse that was in charge of Ford for the day how many patients they treat in a day. 50. 50 patients times 5 days a week. I am in awe of these women. They are very upbeat, encouraging, and professional. I only wish we had thought to take a picture of them all. We are grateful to them for their kindness and care and, in particular, to Laural, Mary, Lori, and Deanne.

Next up in the middle of July will be a PET Scan and a follow-up with Dr. Glenn. Then another endoscopy with Dr. Bodily to check on the ulcer situation and get a direct visual comparison.

Ford was wiped out for about 24 hours. Then yesterday afternoon it was fairly obvious when the effects of the Prednisone began to kick in. He began to pick up a bit on the energy and began to get hungrier. The nausea has been mild. He only slept for about 4 hours last night and has been hard at work on the computer for several hours. His spirits are high. We've also noticed that his hair is beginning to grow again.

His follow-up lab results were good. He did not have a huge drop in sodium this time. After Sunday, the 2-liter total liquid intake restriction is lifted and he can begin to have more liquids even though his water intake is still limited.

As mentioned before, the doctor cautioned against exposure to infection. Because Ford did not receive the Neulasta shot this time, he needs to be even more cautious because his body is on its own to bring the WBC count back into normal range where he has some immunity. It will take longer this time. But it is a good test to see how his body is doing at taking over and fighting on its own.

This is the gist of where we are today. There are other things here and there that are probably blog worthy, but will wait until my head clears a bit and I can put them together in a coherent form.

Done

2009-06-16T22:46:00.000-06:00

We're home. Ford is done. And we are all done-in.

More later.

What's Ahead

2009-06-14T10:32:00.003-06:00

Not much new to report. Ford was able to work at his office at BYU on Thursday and Friday for several hours. Although he came home exhausted, I believe that mentally is was very good for him. He also worked at home for some hours each day.

Ford has had to tone down on the exercising because of the blisters on his feet, but those are healing nicely. It also hasn't been easy to walk with all the thunderstorms we've been having. The plus side of the rain is the air is clear at least for a little while. This helps big time with the allergies.

One other thing that Ford has been doing is taking a few minutes now and then to rest and cat nap. This doesn't seem to affect his night time sleep. It does give him a bit of a boost when needed.

We are gearing up for Ford's sixth chemo treatment on Tuesday. Because this is suppose to be the final treatment in this series, and because all has gone pretty smoothly the past several treatments, we are planning to not stay overnight in SLC, but come home and enjoy our own bed. Then the followup labs will be done at UVRMC Outpatient Services. That will be a nice change.

Yesterday Ford was able to make a quick trip into the Provo Temple to retrieve his clothing. The Temple will be closing after next week for the annual cleaning and it is preferred that all the lockers are empty. This was a treat for Ford. He was able to actually be in the Temple and was able to see many of the workers he has worked with. He was careful about contact and did the elbow bumps as a greeting instead of shaking hands. Thank you to Brother H., Ford's supervisor, for your care and support. We both appreciate you.

As far as I can see, one of the biggest challenge in the next several weeks (along with the normal ones) will be patience. With the end of treatment in sight (at least for now) and the building up of his immune system, we will both need to pace ourselves and not try to jump right into a lot of outside activities before we are sure "the coast is clear."

If indeed the chemo has been successful and the Diffuse Large B Cell Lymphoma has been cleared up, it will be wonderful news.

The reality of it all is that Ford has had two kinds of lymphoma. The second, the low grade MALT lymphoma, until a cure is found, will still be there. Ford is aware that this entails a lifetime of vigilance. When we first received the diagnosis of the lymphomas, it was theorized that the DLBC developed from the MALT. Now we will learn what it takes to try and not have this happen again. We believe, from what we have been told and from what we have read, that if the aggressive intermediate lymphoma (DLBC) is in remission, Ford will be able resume most, if not all, of the activities that he cares to engage in.

The learning experience continues. At least that good old learning curve has returned to more of a curve instead of a 90 degree angle. (-:

Happy Sabbath!

Choices

2009-06-10T15:35:00.000-06:00

There are a couple of sayings, "You can't please everyone all the time" and "You can only please half the people half the time." Ford's philosophy is pretty much, "Who would be foolish enough to even try?" Well, that would be me. There I am, still fighting against the odds.

Since the middle of January, our lives have narrowed to focus on Ford's battle against cancer. We are keenly aware that many of our decisions are different from what others may have chosen.

We have tried to make our way through massive amounts of information about Ford's type of cancer. Along with that, we have read what the mainstream treatment has been and what is being researched. Our doctors and some friends have given us materials and access to a lot of information. We have read about alternative treatments and about nutrition, diet, and exercise. There is not a single guaranteed system and no one magic pill. Being imperfect beings in an imperfect world, finding our way through--that is pretty much what is has been about. There are many that have battled and are battling this same disease. I dare say that no two people have done exactly the same things to overcome this disease. It is not something we would have chosen to experience. We have learned and are still learning--a lot. What is still ahead of us is very daunting, so we focus mostly on the here-and-now.

Mostly, Ford and I are a team. With the exception of a 4 day period of time (when Ford was in ICU and in a coma), Ford has been THE team leader. He has had the final say-so in what course to follow. I have enormous input and he does rely on me, but Ford makes the choices. I cannot fight this fight for him. I cannot make him well. The proverbial ball is, and always has been, in his court. The choices have been his to make.

It has not been a easy to miss so much while trying to protect ones self from infection. Ford misses the contact with people at work, Church, and the Temple. Ford would rather be working at his office. He would rather be biking on his trike and playing frisbee every day. He feels a great loss not being able to attend Sacrament Meeting and to attend and work in the Temple regularly. He loved his Church calling in the Sunday School. He has found no great pleasure in having a niece move, missing a visit with his sister from Reno, or sitting out other visits with family, including one that has been a longstanding tradition--the condo at Park City. We have missed graduations, receptions, and celebrations of many kinds. He has chosen to give these up for a short time, so he can ultimately live much longer to enjoy all these things. Ford made it clear to me saying, "I am making choices based on my health, not on other people's feelings." Ford's thinking is that it is better to remain somewhat isolated and wear a mask when needed, rather than ask everyone else to be constantly vigilant. "Expecting every else to wear a mask, a gown, and to scrub up for my protection...? I don't have that much of a god complex." His way simplifies things a bit. Me, I started out by buying a large box of masks and containers of hand sanitizer to distribute to anyone in very near proximity.

Along with Ford, I have chosen to be guarded in my own contacts. If I were to get sick, it is obviously a short line back to him, given that I am his primary care giver.

We are grateful to all those of you who have been caring and understanding. We have not intentionally slighted or offended anyone. We would ask you to forgive us if any have felt offense due to our decisions. We cannot afford the rippling effect of negative feelings to, in any way, fracture the enormous unity of support and caring we have felt. That unity of support and caring is a large part of why Ford has done so very well.

We are anticipating that this course of treatment will come to an end in the next several weeks and that we can be back out and among all of you again soon.

Same Old Same-old

2009-06-10T14:30:00.004-06:00

Ford's WBC count was really up yesterday (6.4) and everything is looking good.

He has stayed off his feet most of the last three days and the blisters are shrinking.

The flu has hit some in our neighborhood again, so we are ever on the alert.

Next Tuesday is chemo treatment #6. Hopefully, all will continue on smoothly.

Something New

2009-06-08T20:41:00.002-06:00

Today Ford had a new problem come up, minor in comparison, yet painful. He has been exercising on the recumbent bike and walking around the neighborhood. After this morning's walk, he ended up with blisters on his feet. He has nickel to quarter sized blisters, one on each foot located in the same spot. He wore a different type of sock than he normally does today and that may be what caused the blisters. Although the nurse said that moisture can also be a cause. The advice was to keep them clean and dry. Stay off of them. According to the nurse at HCI, because of Ford's low WBC, the blisters will take a little longer to heal. Who knew?

Ford has been getting sleep and his energy has been increasing. He was looking forward to going in to work at the office this week, but now will wait until the blisters get a little better. We just have to be vigilant so there won't be any infection.

On an Upswing

2009-06-05T10:11:00.004-06:00

Ford's sleep cycle may be leveling out. For two nights he was able to fall asleep right away, but woke up during the early hours. He was awake for about an hour and a half, then would go back to sleep for a few more hours. Last night he was able to fall asleep easily and was able to sleep without interruption right through to the morning.

He is looking less exhausted and is gaining energy. It appears that he is on the upswing for this cycle.

Because of Ford's low white blood cell count (and impaired immunity) and because of the H1N1 alert, we postponed any plans we had for celebrating our youngest daughter's birthday on Thursday.

On Wednesday, I was made aware of a miscommunication about the H1N1 situation. Even though the area where our son-in-law works is in close proximity to the area where H1N1 and Virus A has been confirmed, he has minimal possibility of having been exposed. When our daughter called her dad to let him know of the alert, it was to give him the facts and allow him to make the decision of how much contact and when to have contact. He made an across-the-board decision to not have contact for now. I misunderstood and thought they were at a high risk and would let us know when that risk had passed. When things were fairly sorted out, Ford and I talked about the situation. The plans were slightly revised.

Emails went out to the two siblings (and their families) about the possibility of a limited get-together for the birthday girl. They willingly complied and we had a brief, yet fun, celebration. Ford, with mask on, remained at a comfortable distance. The b-day girl was pleasantly surprised.

It was a challenge to come up with a no-sugar cake recipe that matched ingredients that we already had on hand. There are some amazing sounding fruit sweetened treat recipes available, but I didn't have ingredients to make most of them. What we ended up with was edible. It looked wonderful, yet had plenty of room for improvement in the taste category. We'll keep working on it along with other foods since Ford's diagnosis. We've tried to eliminate refined sugar, refined flour, and high fructose corn syrup from our diets. Reading the ingredients on labels of food we commonly eat, it is astonishing how many have high fructose corn syrup as a major ingredient. Some of the foods that it shows up in is strange and makes us wonder why it was added. Has our society become so accustomed to a sweet taste that it must be added to everything we eat? Yowzers!

Infinity and Beyond

2009-06-03T19:11:00.003-06:00

The results from the blood draw on Tuesday showed Ford's WBC very low, as we had anticipated. It was .1 higher than the low point during the last round of chemo, but still in the "Alert the Doctor" category.

The staff at the Outpatient Services at UVRMC are very nice. Most of them recognize that we have been in quite often and are now greeting us when we come and go. I am personally happy that the powers that be built this facility. It is in a totally separate building from the main hospital, has great parking, and doesn't require walking a mile and a half through building to get to where you need to go. It is very easy in and out. There is also a very slick system where any one coming in for services goes to a kiosk to check in. On the touch screen, all the pertinent info is entered in, a pager is selected and when the pager buzzes (actually whines like a someone in pain), on the pager screen it tells the patron which desk to go to in order to get checked in with all the necessary paperwork and all. I cannot remember spending more than 15-20 minutes from start to finish on any of our visits.

Ford took one day off from walking and working out on the recumbent bike. He was so exhausted from lack of sleep. Slowly the past 24-36 hours he is perking up. He got several hours of sleep last night (was only up between 1 to 2:30 am). Our youngest daughter that is home for the summer is also on a messed up sleep schedule. Between the two of them, I've had to find a totally separate room to sleep in just to survive.

I really have no room to complain. Ford is doing very well, all things considered. In just ten days, he will be able to complete the 6th chemo treatment. That is quite an accomplishment in my opinion. He has been able to maintain a courteous and cheerful attitude and been able to continue getting programming done for BYU.

We've lost count of our blessings. We just know it is a large number.

Risky business

2009-06-01T23:03:00.003-06:00

Unfortunately Ford was not able to get much sleep last night although he was totally exhausted. He dropped off to sleep around 2 am and was back awake around 7 am.

He started early with his bedtime routine tonight. He settled down about 9 pm and was finally able to go to sleep. (sigh)

Tomorrow is his weekly blood draw. These next several days can be precarious for Ford. It is typically the time of his cycle that his WBC count is the lowest. What this means for Ford is basically this: the white blood cells are the defense system for fighting infection. Without those, the body cannot fight off any attack. If he gets infected, then he has to get outside help to intervene i.e. hospitalization, and hope that it works or he could die. That is pretty plain. Easy choice for him to choose to have limited contact during this time. He has also decided to wear a mask every where he goes. He feels that it is easier for him to wear one than ask every one else to wear one. He does get some stares and curious looks. He is just trying to have one more layer of protection.

This afternoon the announcement came that there are confirmed cases of the H1N1 virus at the MTC. We have a family member that works there and we are praying that he and his family (our daughter and granddaughter) will be protected. They have let us know that until they are sure they are not at risk, they will not have contact with us. We pray that they will protected and able to remain healthy.

Sheet Street & Pillow Lane

2009-05-31T21:30:00.002-06:00

The Prednisone is wearing off and Ford is feeling the effects of 4 days without much sleep. Hopefully, tonight and tomorrow he will be able to sleep and get much needed rest.

Today has been a quiet, good Sabbath day.

The Real Super Power

2009-05-29T22:13:00.003-06:00

Tomorrow is the last dose of Prednisone for this round of chemo and maybe then Ford can hyper down. Right now he refers to himself as Superman, because the Prednisone makes him feel very strong (health wise). It makes it very difficult for him to calm down enough to get a decent night's sleep.

The up side of it all is that he was able to work 6+ hours today. He also worked out on the stationary recumbent bike for 30 minutes and we walked together around the neighborhood. We also enjoyed visiting with several neighbors and Ward members along the way.

We so very much appreciate the continued prayers offered for Ford. He had such a rough time at the beginning of his treatment. After his first hospital stay in the ICU, he came home weighing 137 pounds. He was able to gain and has been able to maintain his weight at around 157 pounds. When he came home, his arms were bruised and marked literally from wrist to elbow from the IV's, the arterial line, and all the blood draws (every four hours 24/7). His fingers were sore from all the pricks for testing. His head was very foggy and he was very weak. Yet he has progressed and been blessed.

Some of the remarkable things we've noticed about Ford:

-Although his hair has thinned quite a bit on his head (he seemed to lose all the remaining dark colored hair leaving only gray) he didn't go completely bald
-He has not lost his eyebrows or eyelashes
-His fingernails and toenails have never yellowed or turned brittle
-He only has a small bit of neuropathy in his toes and fingers
-His nausea has been mild and able to be controlled by taking ginger tablets and ginger tea (the few times he needed something stronger he took Zofran)
-He has not developed sores or blisters in his mouth or throat
-His skin has been a little dry, yet not to the point of peeling
-The Neulasta injections have not brought on the bone pain that many often experience
-He has experienced exhaustion, yet not the week or weeks of debilitating exhaustion and weakness that we have heard can come
-He has been able to gain back the weight that he lost initially
-He has experienced a bit of things tasting off while he takes the Prednisone, but for the most part, he has been able to eat and enjoy food
-He has had an immense measure of patience taking vitamins, nutrients, protein drinks, healthy concoctions, and unusual foods
-He has endured daily Lovenox injections in the stomach and been able to say thank you after every one, even though the medicine burns like crazy
-He has been able to work about 20 hours a week consistently from home and communicate via telephone with his co-workers
-He has been able to work out consistently on the stationary recumbent bike
-He has been able to get a little bit of frisbee in once in a while
-He has become hooked on Sudoku and has been able to keep his mind alert working through the puzzles
-He has maintained a positive attitude and preserved his sense of humor (every visit to the doctors at the HCI he has prepared a joke, riddle, or some witticism to see what reaction he can get)

There have been many more positives, but suffice it to say that these are why we can definitely say we are witnesses to the fact that prayers are being answered.

While the race is not yet over (and we know it won't actually ever be over for much, much longer), we believe that we can see a flicker of light at the end of the tunnel. We have about 6 more weeks of treatment and follow-up tests before we know how effective this round of chemo treatments has been. Where ever we go and whatever we do, we feel and envision a huge host of support (sort of like the Verizon commercials, only bigger).

We know that your prayers have made the difference in so many circumstances the past four months. Some of you have expressed regret and apologized that you have not been able to do more for us. There is not anything that we could have needed more than your faith, love, and prayers. Once again we offer the seemingly small and insufficient, yet nonetheless, deeply heartfelt words: THANK YOU!

Good Results

2009-05-28T11:47:00.003-06:00

Yesterday, the lab results looked pretty good. Ford's sodium levels did not drop as much as in the previous two treatments. It took us a while to get the results and took a bit longer to drive home, but we made it back to Provo. Home, Sweet Home!

Ford is doing well today. I am not sure if we are getting into the routine of chemo treatments and the trips to SLC, or if Ford can see the proverbial light at the end of the tunnel, or what, but he seems to have handled this round of treatment the best of any. Any nausea has been very mild. While on the prednisone for 4 days after treatment, his taste is off a bit and he has a very hard time winding down to sleep. He understands that this is not an unusual occurrence with this med. That is the toughest he has had to deal with so far.

The doctors at the HCI indicated that they are looking at the 6th treatment being the last of this series. Then, pending the follow-up tests and comparisons, we will see. Dr. Pollack ends his fellowship at the HCI at the end of June. Dr. Glen will remain Ford's oncologist for how ever long it takes. We don't know yet if we get another Fellow after Dr. P. leaves.

Dr. Alward (pulmonologist) checked in this morning to let us know that he reviewed the scans and is very pleased. He, too, said that whatever the masses/lesions were, they are receding. I asked about any concern with scarring. He said that scarring is normal and will not impair Ford's lung function.

Now we try to keep from being around any one contagious with anything. Round #6 is on the schedule for 16 June 2009.

Early To Rise

2009-05-26T21:53:00.004-06:00

We had an early appointment today at the HCI. The normal routine has been that we arrive 45 minutes before the scheduled appointment with the oncologist in order to do have the lab results ready by the time Ford is seen by the doctor(s). Then we go right down the hall to the infusion room and get the chemo treatment.

Our schedule today had us arriving at the HCI at 7:45 am with the doctor's appointment at 8:20 am. Then, as usual, we were told to go on down to the infusion room. When we arrived at the check-in area, the woman there seem to have problems finding a chart for Ford. Then when she found his appointment, she told us we weren't on the schedule until 2:00pm. !! ?? It was currently a little past 9 am. No big deal, except for the fact that Ford is suppose to wait 24 hours from the end of his chemo treatment to receive his Neulasta injection. From beginning to end of a treatment, they figure 5 hours for Ford. That means that we wouldn't be able to get follow-up blood work and shot tomorrow until nearly 7 pm. Ouch. We overnight each treatment to be near the hospital in case something goes awry. The latest check out time they can give us is 1 pm. After that, we have to pay for another day.

The whole staff at the infusion area is awesome. If I have failed to say that in the past, please let me emphasize just how wonderful everyone is. The woman recognized our dilemma and went to see what could be done. They were in a pinch of their own. Because of the Memorial Day weekend and holiday, most all of the Monday schedule patients were scheduled for Tuesday along with the normal very busy Tuesday schedule of patients. Well, long story short, they came and got Ford within the hour. The nurse assigned to Ford was the same one he had last time. She remembered that he had been in the area where he could lay down and asked if he wanted to be there again this time. He readily took her up on the offer. It really is very nice for him to be able to be laying down and able to relax and sleep during the whole process. The only glitches in today's treatment were: (1) the IV had to be relocated almost immediately after the pre-meds began, and (2) the IV pump was very sensitive and every time the pump was set with a new drug and time, the nurse would get just far enough out of the area to be annoying when it would start to beep. It was one of the loudest beeps we have experienced on one of those pumps. Both glitches were very minor. Ford was done with his treatment and we were on our way just before 3:30 pm. Amazing! Again, let me repeat, please, the infusion room staff is absolutely wonderful!! The nurses are all professional, personable, caring, and engaging people. A big THANKS to them all.

The doctor reviewed with us the lab results (all were good) and also the report from the CT scans. The report is that there has been good progress in the lungs. There are visibly less lesions, however, scarring may be a problem to be dealt with later. Ford has two lymph nodules in the chest but because they are very small, the oncologist considers them benign. The thickening in the lining of the stomach is hard to determine by comparing scans, because the PET scan that they are comparing it to, didn't require using a contrast dye for the scan and it is hard to get a good comparison without the contrast. However, it seems that the two doctors that have been treating Ford (the Fellow and one of the head Oncologists) feel that Ford is making good progress. Scans will be redone about one month after the 6th treatment and they should be able to have good comparisons by then. At this point, it seems they feel that the next treatment will be the last one in this series.

Ford slept through most of the treatment, as I previously said. He was hungry after treatment, which is good. After eating, we checked in at the U of U Guest House and we both slept for several hours. Ford woke up hungry and was able to eat a very substantial dinner. He is tired, only slightly nauseated, but in very good spirits. He is currently listening to a show on TV with Brian Regan, a popular comedian and a favorite with some of our family and friends.

I will end with Ford's observation shared with his attending nurse today. A majority of patients receiving chemo treatment have a PORT installed for the duration of the treatment. This allows direct access for blood draws and infusions without the continual need for IV's or finding veins for needle "pokes" or "sticks" every time. Ford cannot have a port because of the increased risk of blood clots. Ford told the nurse today that observed that there are two types of patients. There are the Port-ables and then there are his type: he is in the IVy league. (-;

Lazy Day

2009-05-23T15:02:00.004-06:00

Everything went smoothly yesterday driving to SLC and to the HCI for Ford's scans. I really appreciate the valet parking at both the HCI and the U of U Hospital. We went to the U of U Hospital to get the disc of the scans we were suppose to bring back to the doctor in Provo. The copy that the HCI would have given us would not be readable except on their own system. The U of UH copy can be read at any doctor's office in the USA (according to the cute little receptionist at the HCI radiology desk).

While at the U of UH, waiting for the valet to bring our car to us, I was bemused by the young fellow standing a few feet away from two "NO SMOKING" and one "No Smoking within 50 feet" signs while smoking a cigarette. There was an elderly woman on oxygen sitting in a wheelchair near us waiting for her van. I am not sure which bothered me the most, the fact the I am allergic to smoke and was having a hard time breathing or that this guy was possibly oblivious, illiterate, apathetic, ignorant, selfish, inconsiderate, reckless, or a combination of the above. It also made me get to wondering who enforces those types of rules at a hospital and emergency services entrance. I looked around and there were several valets scurrying around, hospital patrons coming and going, and those of us I previously mentioned. No one that looked like the enforcing type of people. (See how easily entertained I am these days!) :-)

Back to the scans...Ford evidently is becoming accustomed to the taste of the berry flavored barium and said that it actually did not taste that bad. This is, to the best we can figure, Ford's fifth time doing the barium swallow for CT scans. He is one hot guy! Hence, the reason that the pulmonologist was agreeable to not doing CT chest scans of his own and then having them done again a few weeks later. He settled for a copy of the scans instead. And yes, the irony has not escaped us that while waging a battle against cancer, the frequency of the scans increase the risk of cancer. (Here I will spare you a diatribe on the obvious conundrums in our current methods of detecting and treating cancer.)

Once Ford went in for the tests, it was a very short wait. Ford contributes to the story by telling me that the majority of the waiting time was him trying to lock what seemed like an unlockable locker. He had outfitted for the scans and put his belongings in the locker. "The key is already in the lock. All I have to do is to shut the door, turn the key, and take the key out of the lock. It won't come out. I turn it back the other way and the door unlocks. Now I have to figure out if it is a quarter turn, a three-quarter turn, and in which direction. It can't be that hard."

When he finally was able to get the mechanisms to work and exited the dressing area to the waiting technician, he apologized by making some comment about the lock being smarter than he was. She remarked that it often takes people a lot of time, that he wasn't the slowest, and many of them end up having to ask for help. Hey, we already knew he wasn't a hardware guy...

While we were waiting, copies of the book, "Winners Never Cheat," written by Jon M. Huntsman were being handed out to patrons in the different areas at the HCI. Ford and I each received a copy. How did the scans turn out? Don't know. We think that the pulmonologist will contact us some time next week after he has a chance to review the disc. We also think that we will get some type of report from the doctors at the HCI on Tuesday when we show up for Ford's next treatment.

Today has been a very laid back type of day. We'll enjoy the quiet of the weekend, look forward to our granddaughter and her parents getting back from their Disneyland vacation, and Sunday Sabbath activities. Then we'll gear up on Monday for the trip back to the HCI, Ford's next chemo treatment and follow-up stuff.

We will also be taking time to remember on Memorial Day those many people that have done so much for all of us and are a big part of who we are and what we enjoy today.

Not a Great Year for Family Visiting

2009-05-21T20:26:00.002-06:00

Ford was able to work at the office today for a short while today. He got several hours of programming in yesterday and today.

We missed getting a message from his sister that was visiting here in Utah for a few days, so he didn't get to see her before she and her family had to head back home. This doesn't seem to be the year we will be visiting with much family. The annual Park City condo visit is out, although we were able to visit with Ford's dad and wife before they got up to Park City. That is always a treat. We also found out today that one of the niece's and her family will be here in a couple of weeks and would like to get together with as many of the family as possible. Since that will be the week of Ford's lowest immunity, we will not be seeing her either. That just means we will be looking forward to the next time once Ford has finished with his chemo treatments.

Ford and I have been able to take a walk around the neighborhood area for the past few evenings and then he has come home and put in some more time on the stationary recumbent bike. He will definitely be glad to get back to biking on a regular basis when he is feeling better.

Tomorrow we head to the HCI for CT scans. We both will be happy to have those over with. We are suppose to bring a disc that has a copy of the scans back to Provo so the pulmonologist can review the chest area and see what is happening in the lung area. We hope that the blood clots Ford had in each lung are cleared up.

That is pretty much all the news for today.

Holding Steady

2009-05-20T18:10:00.003-06:00

The results from Tuesday's blood draw were pretty good. The WBC was just barely in the normal range, but that is a big difference from last week. Sodium level is looking good. There were more H's and L's (highs and lows) on this result than there were last week.

The Neulasta injections seem to be going very well for Ford. His WBC does recover much faster and there doesn't appear to any ill side effects that we have been able to detect. Yeah!

With the WBC up a bit, Ford went in to work yesterday. After a couple of hours, he did not seem as tired as he has been the last few months.

Friday Ford is scheduled to have CT scans done of chest, abdomen, pelvis, etc. These will be used to compare to tests that will be taken after his sixth round of chemo. When those results are completed then we will know if Ford is done with treatment. His fifth chemo is coming up on Tuesday, if all goes well. Then, if things continue to go well, the next treatment (#6) will be 16 June. We are not sure how soon after the treatment that the follow-up scans are done, however, Ford may well be within six weeks of completing his treatment.

For the past few weeks, we have many people comment on how well Ford is doing and how good he looks. Many people have shared with us their experiences with cancer treatment and the process of recovery. Except for a very rough first 6 weeks, Ford has done remarkable well by comparison. We believe that he has had tremendous blessings due to the amount of support and prayers. We have amazing family and friends, near and far, that have continued to let us know of their love and well wishes and prayers. This is a humbling realization. Again, we say thank you to each and every one of you. Thank you for the cards, the phone calls, the personal visits. Thank you for the loaves of bread, the goodies, and the food. You have indeed lifted us and helped shoulder a tremendous load. When Ford is in the clear, we will do our best to return the love and service in whatever way we can. For now, know that you all are in our prayers each day.

Spring Fever

2009-05-16T10:28:00.003-06:00

Spring looks like it is finally here! And so is all that it brings, good and bad.

We have had a few days of sneezing, runny noses, and watery eyes. Allergy season is in full swing and along with everything else, we are thankful for allergy meds.

Although Ford's WBC came in very low on Tuesday, he has been gaining energy throughout the week. He is trying to be tolerant of being at home full time, however, I can feel the energy building up.

For a couple of days in a row, he was able to get daughter #3 to go out and play frisbee with him. The running space is very limited in our front yard, so yesterday I asked if he wanted to go up to Provo Canyon and play. He immediately took me up on the offer. Our daughter was also a willing participant so off we went. They threw, caught, and chased frisbees until they were both tuckered out. Then we drove a little more through the canyon. It was absolutely beautiful. The weather was perfect. And it was great to get out and play.

When we got home from the canyon, we got a visit from daughter #2 on her way home from a roadtrip she had taken to St. George. That is always a welcome treat, to have her drop in and catch up.

After supper, Ford still had energy to burn so we went out for walk. We've more than doubled our usual walk. He does very well and seems to be working out the kinks from lack of exercise, especially in the knee that had the ACL repair. After that walk he wanted to go out some more, so he took another walk around a different part of the neighborhood. He is doing so well that I am having trouble keeping up with him.

Ford has continued to be able to work from home. He has commented that when he is done with treatment, his bosses will want him to work from home because he is able to get so much done. Everyone has been great working with him via phone and computer. For that we are grateful.

He misses his work and the workers and patrons at the Provo Temple. Thank you, Brother H. for keeping in touch with him! It helps.

We have a family in the neighborhood that has been good enough to help care for our yard. They have taken charge and seen that things are getting done like the mowing, edging, weeding, fertilizing, etc. They are very dependable and do good work. We are thankful to them! In fact, it sounds like the lawn is getting mowed even as I type. It helps stave off the frustration I have at not getting out there to get things done. I have OH-so-great-plans for landscaping and gardening, but it looks like it will have to wait another year. Maybe the chemo will create a chemical change in Ford that will make him want to get out and involved in the yard and garden... ha ha. Just kidding!

Catching Up

2009-05-12T16:54:00.007-06:00

The weekend was uneventful. Ford and youngest daughter played frisbee again on Saturday. Getting outside gives Ford a boost. He also enjoyed watching the national volleyball championship matches hosted at BYU (via TV, of course).

Two young men brought us the Sacrament on Sunday. Daughter number 2 and her husband came by with happy Mother's Day wishes and a present for a few minutes. Oldest daughter called to say Happy Mother's Day and youngest daughter prepared dinner. I am grateful for 3 wonderful daughters!

Today was blood draw day. The doctor called when the results were received and let us know that the WBC was very low. And, it isn't even Thursday yet when his WBC hits its lowest point in the treatment cycle. That means extra caution this week to protect Ford from exposure to anything that might compromise his immune system.

We have been expecting family to be able to stay for a few days, but we had to find them a motel room instead. In Provo this week that is a major accomplishment. However, a wonderful clerk at one motel made the impossible happen. Customer service like that is rare to find any more.

Although Ford's WBC is down and he is very tired, he perseveres exercising and putting in several hours of work. His good attitude is still intact. He is remarkable and has endured much. He doesn't like having to be home all the time, however he agrees that somewhat of a quarantine for the time being is better than contracting something and being very, very ill or dying. He prefers home to the hospital 100%.

Today's Update

2009-05-08T20:44:00.002-06:00

Today was the first day since Tuesday's chemo treatment that Ford has not needed any anti-nausea medicine. And tomorrow is the last dose of Prednisone for this round of treatment. This is always a good day for Ford.

The color in his face has returned to normal today. For a few days after the treatment, his face is sort of pallid.

Although Ford is getting quite tired of being "on house arrest," as he calls it, he is doing quite well. The Granddaughter was over for a few minutes today and always loves being with Grandpa. This does Ford some good too.

He also got outside for a little while and threw the frisbee around with our youngest daughter.

This evening we took our walk around the block again. I was in agony from cleaning carpets today. Ford, as always, was a good sport and very patient and encouraging. Who's helping whom?

Over the hump

2009-05-06T22:11:00.004-06:00

We are home. We are tired. I'm getting old and driving the freeway makes me irritable. Actually, it is only the drivers on the road that are rude, inconsiderate, ignorant, reckless, clueless, aggressive, or flat out dumb that get to me. The other 1% and I get along great! (-:

Ford is doing okay after his treatment and today's shot. He says that the burn from the Lovenox shot is worse than the burn from the Neulasta shot. The doctor told him that there was an alternative sight for getting the Lovenox shot rather than in the stomach. But Ford declined. He says he did not want to get behind and that he didn't like the way things would end up.

He had a 6 point drop in his sodium level. No one seems too concerned (except me, of course, who worries about every change). It is still close to the 135-145 range. He has had some nausea, but has done well at eating today.

We were able to take a little walk around the neighborhood this evening. We are woefully and shamefully behind where we should be in our walking health challenge. Sorry, Team.

Hopefully, Ford will be able to get a good night's sleep tonight.

Laying Down on the Job

2009-05-05T22:44:00.002-06:00

Today was a long day. We arrived at the HCI early and waited until it was our scheduled appointment. The doctors were way behind and we waited another hour. That put us behind at the infusion room. We waited in that waiting area for about 15 minutes and then was told that there were no more chairs available so they would have to use a bed, if that was okay with Ford. Bonus! This was a very good option. For the first time Ford was able to sleep through most of his chemo treatment. Things went fairly smoothly, but took a little longer than usual. Ford was pretty wiped out when it was all over. We checked into the Guest House, got everything into our room, and went to get some dinner. Ford ate really well and said that it tasted good to him. Then he went to sleep for an hour or two.

Tonight he says that he is doing just fine. "Terrific."

Tomorrow we have to wait until late afternoon to get the blood draw and shot because the Neulasta shot needs to be given 24 hours after a chemo treatment. We go first to get the blood draw and then if the levels check out okay, Ford will get the Neulasta shot.

The doctor took some time to explain what the normal routine was from here as far as CT scans, treatments, and such. He went through explanations of the exceptions, the what if's, and could be's at a quick pace and although I was trying to write down the gist of things, I still need to go back and figure it all out to make sense of it.

An attempt to follow up will come later.

Thank you, still, for all your prayers and well wishes. We are still feeling very blessed.

What's on the Schedule

2009-05-04T17:49:00.002-06:00

Today is all about prepping for tomorrow mentally, emotionally, and physically (every day is a spiritual prep). Tomorrow will be chemo treatment #4. Ford will be over the hump, so to speak. We leave about 7 am. Treatment will most likely be done around 3 pm. Then we get to overnight in SLC and go back to the HCI so Ford can have a blood draw to check sodium levels and receive the Neulasta shot.

We hope there are no abnormalities and that things go smoothly. If that happens, then, to our understanding, Ford goes back in two weeks for some follow-up tests to see how he is progressing.

Today is the start of a walking challenge through BYU's Wellness Center. Since Ford and I are running a bit short of the 8000 steps suggested for the day, we will be taking a walk around the neighborhood later this evening. Hopefully, that will help Ford get right off to sleep tonight.

In Retrospect

2009-05-04T05:07:00.004-06:00

While things are at somewhat of a lull here, I thought I would post about something I learned that might be of help to someone else.

Several years ago I heard the advice of putting your address and phone number in a visible place by every phone in your home in case of an emergency. It was explained that many times in an emergency it is easy to forget even the simplest things like your own address and phone number. I heard the advice. I processed the advice and thought how good that was especially for babysitters that might have an emergency while tending. I didn't heed the advice because our family was well beyond the age for babysitters, however, I did caution any of my daughters that might be babysitting about writing down that information when they were asked to tend.

We have lived in our current home for 10 years. I have seen, written, and spoken our address many, many times. It is ingrained into my brain. Or so I thought. Now I am suggesting to EVERYONE that you put your address and phone number in large letters near every phone in your house. If you have a portable phone, post it somewhere on the phone. (If your only phone is a cell phone, be creative.) This is why I have become a believer and an advocate of this advice:

Wednesday, 25 February 2009, was the day after Ford's first chemo treatment. He had felt fairly good when he woke up in the morning except for a slight headache and some nausea. We had been told that these symptoms might occur and had been given prescriptions to counteract them. I dutifully followed the instructions we had been given. The medicine worked as had been explained and Ford's symptoms were relieved. All went fairly well until a little after noon time. After that time things got progressively worse. Ford was struggling to communicate telling me that he was in a loop (term common to programmers) and that he couldn't find his way out. His nausea was also worse and he began to throw up. The medicine did not seem to alleviate the nausea and he was increasingly "out of it." He began to feel worse and worse. Since I had heard of some pretty bad reactions after chemo, I thought that what was happening was all after effects. I called HCI and the nurse told me, after checking with one of the doctors, that what was happening was normal with the meds that Ford was being given. Around 9:30 pm, Ford began to throw up more frequently and more severely. Another call to HCI yielded no help. Ford received a Priesthood blessing a little after 10 pm and settled down for a few minutes. While sitting up, the nausea seemed to ease. I went upstairs to try and bring down a comfortable chair for Ford to rest in while my mom stayed with Ford. All of a sudden my mom was calling to me that something was going wrong. I rushed downstairs and into the bedroom. Ford, who had been sitting up when I left the room, was now laying over on his right side and was totally blue. I ran around the bed and grabbed him and pulled him back up to a sitting position. He began to make an awful moaning noise. I was freaking out. I told my mom to hold him while I ran to the phone to call 911. I tried to tell the 911 dispatcher what was happening. She kept asking me to calm down and kept asking my address. I kept giving her my address and she kept saying that she was seeing a different address on her screen. I was hysterical. I was certain that I was saying the correct numbers. After several moments of switching to a portable phone, describing what was going on with Ford, and again trying to get my address, finally she told me to go open the door, that help was there. When I opened the front door, there was no one. I could see the flashing lights down the street and saw a police vehicle drive past me. I told her what was happening. She again asked my address. I gave it again and she told me that I had given her the wrong address before. Within seconds a police car rounded the corner and all the emergency response vehicles pulled up. Ford was stabilized and rushed to the hospital. And the rest is history....

All this time I was certain that I had been giving the correct address. Obviously, I was wrong. When I had calmed down and had the chance to think about all that had happened, I replayed in my mind the address that I had given. I realized that I had transposed two numbers and because the dispatcher could not get me to calm down, I kept repeating the same mistake. The only time I gave the correct address was when I had opened the front door and gone outside.

Now I repeat the advice. We never know how we are going to act or react in an emergency situation. We are never quite sure what the emergency situation might be or who it will involve. Think about it.

I am frankly very surprised (and embarrassed) at how I reacted. I was not in control and, while everything turned out okay for Ford, my mistake could have been critical, perhaps even fatal. It also created a bit of trauma for the dear elderly neighbor couple at whose house the police and emergency response did show up. Rumor has it that one of the couple looked at the other and asked it they had died. (-:

It takes very little time to post your address and phone number. It doesn't have to be fancy, just readable. PLEASE! GO DO IT NOW.

It probably wouldn't hurt to show every one in the family where it is and why it is there--young, old, and in-between. Perhaps make it a part of your emergency planning and practicing.

"Prevention is preferred over redemption." I heard Susan Warner say this in a leadership meeting several years ago. I believe this applies to the physical as much as the spiritual.

By The Inch, A Cinch

2009-05-02T07:20:00.003-06:00

Ford is doing well. He has been able to continue to work this week and has gone in to BYU every day for at least an hour. Then he works at home for several more hours.

He still is working on stamina. Since he still has three more treatments to go, it is pretty safe to say that his stamina will be up and down for a while longer.

Ford weighs in every morning and his weight is at an all-time high (not counting the 20+ pounds he put on when he was pumped full of liquids while comatose in the hospital). This should give him a bit of a cushion going into the next treatment for those times he doesn't feel like eating or food doesn't taste right.

He is tolerating the daily injections with a good attitude. The Lovenox burns as it goes in. His stomach is probably pretty tender from all the pokes, yet Ford fights through it all and responds with a cheerful, "Thank you."

Being able to go to the Temple would be an enormous boost for him. The risk of him getting something from someone who may not be wise enough to stay home when they are ill is the only thing keeping him from going, even for a little while. He loves his assignment and misses being able to work in the Temple each week.

Next week's treatment pushes him over the half way mark! He made it all of April without a visit to the ER or a stay in the hospital.

Ford enjoys having short visits with any who would like to come, as long as you are well. He has appreciated those who have come and those who have called.

Evidence of prayers being answered are seen each day. Thank you to all of you for the prayers and love and support. You have been wonderful in letting us know that while we may not see you, we have not been forgotten. Thank you.

Clarification on Health Status

2009-04-29T14:00:00.003-06:00

Since the question has come up several times now, it warrants a post on the blog. I am well. I do not have pneumonia. I have not had pneumonia recently. I am not sure how the news has spread, however, we have wonderful neighbors and Ward members that have been caring and concerned. I did have a mild cold several weeks ago and that is long gone. Currently, Ford and I have been dealing with seasonal allergies easily remedied with antihistamines. Thank you to those who have asked and been concerned. We definitely feel loved!

An Okey-Dokey Day

2009-04-29T09:10:00.002-06:00

Yesterday was a learning day.

We learned that the $6000+ for the Neulasta shot was a good investment. Ford's WBC count was up significantly.

For the first 4-5 weeks of giving Ford his daily Lovenox injections, I was happy that only two had bruised. Then last week, every single one bruised. I was frustrated. I reviewed what I might be doing differently. (Giving Ford shots is a lot easier for me if I don't have a visual after effect reminding me that I am causing him pain--while of course, I am possibly helping to save his life.) This week has been a lot better. I still don't know what I was doing differently. When the pulmonologist was checking Ford over, I explained what was happening. He told us that when the platelets are at a low count, bruising is something that happens. Not my doing. Yeah!

The next thing was kind of funny to Ford and me. When he had the major drop in sodium, this doctor told him to cut back on the amount of water that Ford was drinking. He could drink other liquids, but only a limited amount of water (.5 liter). The doctor up at HCI took it a step further and told Ford he was to limit total liquid intake to 2 liters. (Remember, this is a guy that for the last several years has had a daily intake of approximately 2 liters of water along with other liquids.) This was a real challenge for Ford. But he has done very well. And his sodium levels have not gotten below 133. Well, Ford has a standing order for a weekly blood draw so that the doctors can keep on top of things. Each time I have looked at the results, the CO2 levels have been high, some higher than the normal high. I asked the doctor about that. Some of you that are reading this that have medical knowledge probably are way ahead of me. The high CO2 levels are an indication of dehydration. Ford and I looked at each other and chuckled. "A conundrum?" I commented. The doc simply said "Nah, just increase your liquid intake of anything besides water." We told him of the limit the other doc had given him. He sort of shrugged his shoulders and replied with something to the effect that those numbers will remain a little higher then.

At the doctor's visit, he also showed us the CT imaging of the scan taken during Ford's last ER visit in March. He put it in motion so we could see the progression of the images of Ford's lungs as it went from top to bottom. He pointed out the areas of interest and of concern. We didn't have a current CT scan of the chest like we normally would have at this visit so that he could do a comparison. Ford has had so many CT scans of all areas that the doctors decided to wait and combine scans. The normal procedure of the doctor at HCI is that a couple of weeks after the 4th chemo treatment (the one coming up next Tuesday), they do CT scans to check on progress. We are to make sure that a chest scan is done and that we bring a disc back to the pulmonogist so he can do the comparisons. So about 4 weeks from now, we should have an update on both the blood clots and the cancer.

Everything else checked out Okey Dokey at this time.

Looking Good

2009-04-27T18:33:00.003-06:00

The weekend passed without any thing out of the ordinary.

Last year, for the first time, Ford had to deal with seasonal allergies. It seems like he is again dealing with that. He is sneezing and has had some congestion, but symptoms are relieved with allergy medicine.

Tomorrow he has an appointment with the pulmonologist. Then one week away is his next chemo treatment.

He is looking good. Even his mommy said so when she stopped by today.

We will see what his WBC count is tomorrow. If it is looking good, then maybe he can get out a little more, perhaps to church on Sunday or maybe the Temple on Saturday. As long as he doesn't shake hands with anyone and stays at a distance from any one who might not be healthy, he should be okay. We shall see.

BOR---ING! yup yup.

2009-04-24T11:35:00.003-06:00

Wow. It is Friday already! This week has been relatively uneventful in regard to Ford.

He continues to have trouble going to sleep at night, but that is because he continues to switch up his activities before bedtime. There is merit in a consistent bedtime routine, I believe. He will get it worked out. At least he is getting some extra programming done for work.

His aches and pains seem to very minimal.

His weight is staying consistent.

He is able to work at least 4 to 5 hours a day. He is getting some projects finished up that have been on the back burner for a while. There seems to be less interruptions and distractions at home, so he feels he is making good progress. He doesn't have as far to go for personal breaks and for lunch, so he gets back to work quicker. And, as mentioned above, when he cannot sleep, he can work.

We have enjoyed having visitors. It gives him a break and he gets to see someone elses' face other than my own. (-: We still have to be careful that no one that comes has any kind of illness or infection.

Last night I thought I was coming down with a cold again. I stayed away from Ford and slept in another room. Turns out it was just allergies. No symptoms this morning of any kind. The benefit to me was big. I feel that I got a very good night of sleep!

Everything seems a nice kind of boring. We'll take it!

Monday - Tuesday

2009-04-21T22:56:00.003-06:00

Yesterday (Monday), Ford woke up with a level 4 pain in his right side from about waist level to under his arm and also about waist location around his back. This is another mystery to us. The pain faded toward the afternoon, but was back this morning. Advice from staff at HCI says nothing to worry about currently. Wait and see if anything else develops.

Yesterday was dermatologist day. Our dermatologist had explained that patients with lymphoma have a greater risk of developing melanoma in about a year. He checked Ford over very carefully. Everything checked out and he told us to come back in a year.

Today (Tuesday), Ford told me he had been experiencing some pain in his right foot. Another curious development. Might be neuropathy, but then again, it might be the difference between wearing comfortable slippers most of the time and then wearing shoes for a couple of hours.

Other than these two things, he seems to be doing well.

Today was a blood draw day. Last week his WBC was high because of the Prednisone and possibly the Neulasta. Today it had taken a nose dive compared to the last one. From a 43 to 1.4.

There is still a lot to learn. To me this is one of those circumstances where the more you learn, the more you understand how really little you know and how much more there is to learn.

2009-04-19T13:50:00.002-06:00

Today is a beautiful Sunday morning, peaceful and quiet.

Ford slept very well last night and is doing well today. His color is good and his energy is picking up.

He is able to eat most anything without it having an "off" taste due to the chemo.

"For being a sick, sick boy I am doing very well" is what he is saying.

Happy Sabbath!

Good Day--Sunshine

2009-04-18T18:34:00.003-06:00

Something woke me up around 3 am. It seemed like Ford was restless, so I asked if he was okay.

"I hurt," came the reply.

"Where?" I asked.

"Hm. Hm. Hm. Can I go back to sleep?" he said.

Okay, so now I am trying to decide if he is in pain, if he is confused (possible sodium drop) and cannot tell me where, or if he is merely dreaming and only partially awake.

Every time he moves or makes a noise I am wide awake. When it is very quiet, I listen to see if he is still breathing. The sun starts to rise and the clock finally shows 8 am. The good thing is that nothing seems to be wrong. Ford wakes up and is feeling really great. No pain and a good night's sleep. Yeah!!

And today is the last dose of Prednisone for this round of chemo (he takes a dose of Prednisone after each treatment for the 4 days following).

Ford is eating well, his weight is stable at 154, and he is in no pain. He has no nausea. He has no fever.

Today he has been able to do some programming to make up for the hours he wasn't able to do this last week. He even slipped out the back door to go do some dandelion plucking from the back yard.

Thank you, everyone for your prayers. They are continually being answered.

All's well...

2009-04-17T20:02:00.002-06:00

Today began very early this morning. At 4 am, Ford sat on the edge of the bed and told me that he was wired. I asked him to explain. He said that he was in a loop and couldn't find his way out. This was the same way he had described things the day after the first chemo treatment when his sodium level was dropping and we didn't know enough to know it. I asked if he was nauseated. He said yes. Oh, great! Another symptom. A third symptom was that he was very anxious.

I first went to the kitchen to fix him an electrolyte drink (something that would help balance his electrolytes). Then I called the on-call doctor at HCI. I am sure that he wasn't thrilled at the 4 am call. However, it had been emphasized that if there was a problem we were not to be polite and wait. We were to call. The gist of the response that I received after explaining the situation and a bit of history was that he didn't hear anything that was so unusual. I politely thanked him and then hung up. Talk about total dejavu!

The message on Dr. Alward's phone was that if we needed to speak to the doctor on call, contact the Critical Care Unit at UVRMC. So I made that call. The nurse that answered was very nice. She asked questions, made some inquiries, and then explained what the options were.

By this time, Ford had decided to try to eat something. He dispelled a lot of gas. And then I gave him another electrolyte drink. By 6 am, his head was clear, the nausea was gone, and he was a lot calmer. He went back to bed and fell fast asleep.

I emailed the nurse at HCI so that when she arrived in the morning she would have an update on Ford. She was prompt to email me back. We went into the Outpatient Services for a blood draw. A few hours later the doctor called and said all looked okay. Just for safety sake, he made a standing order for a blood draw, as needed.

This evening Ford seems to be doing well. He had visitors today that he really enjoyed seeing and talking with. Also, our granddaughter came over and had a grand time with her grandpa (no pun intended). He got a couple of hours of work in while I took a nap. And then he was willing to run a couple of errands with me.

He is just vegging out tonight.

So Far, So Good

2009-04-16T20:35:00.004-06:00

Blood test results today showed Ford's sodium is on the rise, from 133 up to 138 (normal is between 135 - 145). His level has been around 141. (The number on the drop when he had the seizure was 120 and then went all the way down to 113-115.)

He has felt tired today, his tongue feels swollen (but it isn't), and his taste is a bit off.

It has been about 32 hours since the Neulasta injection and he has not felt achy. He has not had an increase in nausea either.

So far, so good.

PM Update

2009-04-15T23:06:00.002-06:00

We are home tonight. Chemo #3 completed. Neulasta shot received. Follow-up blood work done. Ford's sodium and other electrolyte levels are dropping. We'll go for another blood series tomorrow.

We waited around for two hours this afternoon at the HCI today for the blood test results and a prescription refill. It is hard to complain about those two hours. When we arrived at the HCI, it was near blizzard conditions. Reports all over was that it was snowing, roads were not too bad, but visibility was low. After waiting, when we left, it had stopped snowing and the roads were wet, but clear. We received a call from our youngest daughter telling us that it was snowing very hard in Utah County and we might want to stay in SLC overnight. By the time we reached Utah County, it was also wet, but clear with patches of water on the road.

Ford's temperature is slightly up tonight. We will keep an eye on any changes. Any reactions to the Neulasta should show up within the next 24-36 hours.

Morning Update

2009-04-15T10:49:00.002-06:00

Ford slept through the night quite soundly, as far as I could tell. He woke up very cheerful and feeling well. As yet, he hasn't experienced any nausea. He is anxious to go home. However, because the Neulasta shot is supposed to be given 24 hours after chemo, going home has to wait several hours. So he is taking a nap.

Three Down, Three to Go

2009-04-14T21:36:00.004-06:00

Ford and I left a bit after 6 am today for Salt Lake City. We decided to take a new route up to the HCI. Although the speed limits were a lot slower after exiting I-15, there were only one or two cars on the roads we took all the way up to the hospital.

The morning was beautiful and as we came into the SL Valley, we were able to see the Jordan River Temple, the Draper Temple, and the new Oquirrh Temple (when we left treatment today we could barely see past the U of U campus).

We checked in early at the clinic to get Ford's blood work done and get the IV inserted. Then we walked down to the infusion room to check in. Once we had checked in, we returned to the clinic area to wait to visit with the doctors.

According to their scales, Ford has gained back 19 pounds since he left the hospital after being in ICU.

We waited in the examination room for an hour before the doctor came in. It gave us time to give Ford his Lovenox injection. That is the longest by far that we have had to wait for anything at the HCI.

Ford's blood work looked good and the WBC had doubled since last week. Yet the doctors insisted that the only option for Ford's best interest was to take the Neulasta shot. Dr. P. spent time explaining about the drug and what it did and only the one side effect of bone discomfort. He explained that Neulasta builds up bone marrow and in bones where the marrow is thick, it is like adding fertilizer. The marrow increases and puts pressure on the bones. In patients that have less bone marrow (and he feels that Ford is in this category because of the cancer in his bones), the pain is less severe or even non existent because there is very little to start with so there won't be overcrowding.

He listened to our questions and concerns. He answered and addressed each one of them. But he stood firm in his opinion and Dr. Glenn agreed with him.

Ford gave his approval to go ahead and receive the shot.

Ford did well during the chemo treatment. Once things got started, it only took three hours to work through. Because of the pre-chemo drugs, Ford felt a little fuzzy in the head part way through. He slept a little and did Sudoku puzzles to pass the time. By the time the chemo finished, his head had cleared and, although he was tired, he was doing okay.

After we left the HCI, we checked in at the Guest House, unloaded our gear, and then Ford felt well enough to go search out a Subway and have his usual.

Ford has felt a little nausea this evening. This is earlier than the last treatment. We hope we can treat it without any major drugs. So far between the ginger tablets, the ginger tea, and Zofran, he has been able to deal with it.

Tomorrow morning we return to the HCI for blood tests to make sure his levels are still in the normal range, especially the sodium. Then we will hang around awhile so he can receive the N shot. It is supposed to be given 24 hours after his chemo treatment.

After that we do the best we can with whatever comes.

I sincerely hope that my best will be better than it was today.

Did you know that men's toupees are falsehoods?