29 April 2009

Clarification on Health Status

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

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.

27 April 2009

Looking Good

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.

24 April 2009

BOR---ING! yup yup.

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!

21 April 2009

Monday - Tuesday

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.

19 April 2009

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!

18 April 2009

Good Day--Sunshine

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.

17 April 2009

All's well...

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.

16 April 2009

So Far, So Good

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.

15 April 2009

PM Update

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

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.

14 April 2009

Three Down, Three to Go

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?

13 April 2009

Calm Before the Storm?

Since things were fairly unchanged over the weekend concerning Ford , I took a break from posting (an Easter/Spring break?). (-:

We had a wonderful Easter weekend and hope that you all did also!

Ford has been able to keep his weight up and is now very close to what he was when he considered it to be in normal range. We hope that with the third and fourth treatments, he will be able to continue to curb any nausea and maintain his appetite. From what I have read, many of the side effects kick up a level or two with the next two treatments.

Tomorrow we go back to the HCI for treatment #3 (we hope).

We have been researching the Neulasta shot that the doctor has ordered Ford to take with his treatments. We have also been gathering input from people that have first hand experience from taking Neulasta. We have some huge concerns about the shot, its side effects, and the meds that may be needed to curb the side effects.

Neulasta is something that is being giving after each chemo treatment to help boost the WBC counts very rapidly so that the treatments can continue being administered on a regular course. It has some great reviews as far as doing what it is meant to do. However, 57% of the patients receiving Neulasta experience moderate to severe bone pain for anywhere from 4 to 7 days. This pain often begins the day after injection. It is usually centered in the bones with the highest density of bone marrow, i.e. pelvic area, spine, upper legs, and clavicle. The most common tag that patients give Neulasta is "the shot from h---." For some, the pain has been so intense that it hasn't been worth continuing with treatment. Some patients have taken Aleve, Advil, or some other form of ibuprofen for the pain. Aspirin works for some. Ford cannot take any of these because of his blood thinner and because of his ulcer. Some take prescription pain killers (which is what one of the doctors who is prescribing the shot has suggested). This concerns me. Most prescription pain killers are effective for pain, but they also create a problem with normal abilities to function (hence the warning not to drive, operate heavy machinery, or make important decisions, etc.). Since the episode with Ford the day after the first chemo treatment, we have felt it very important that Ford be able to be coherent enough to communicate when things aren't "right." He had every symptom that would indicate his sodium levels were dropping at an alarming rate, but because we had given him the medications that are routinely prescribed for post chemo related side-effects, no one picked up on the red flags that were waving right in front of us. The medications had side effects that were so similar to the signs of the impending hyponatremia that it was assumed that it was the medication. And the meds made Ford so "loopy" that he couldn't communicate what was happening. It could have been fatal. I firmly believe that the prayers being said by so many friends and family were what made a difference to ensure that the series of circumstances that followed his seizure all worked for his well-being.

Besides increased nausea, hair loss, headaches, and fever, there are many more side effects to Neulasta that create enough concern for us that we feel it important that Ford be able to communicate accurately any changes that may occur. Some of the side effects are listed as life threatening. If the signs for a side effect is pain in the ribs and shoulder blade and fever, how does one distinguish between that pain, fever, and nausea and the pain , the fever, and nausea
some experience "normally" from the Neulasta? For us, it is a conundrum.

There is a chance that Ford might be in the 43% that will not experience bone pain. Hmmm. Are we willing to take that chance based on Ford's track record? Who would willingly take the chance to put him through more than he has already experienced (knowing that things all ready have the potential to get rougher with the next two treatments).
Tylenol may help take the edge off and a couple of people have reported that Claritin taken the day before receiving the shot has helped reduce the pain level somewhat. The decision is ultimately up to Ford.

The bottom line is that we are praying for wisdom and guidance. We are also praying for wisdom, guidance, and inspiration for those doctors and other medical personnel caring for Ford. We pray that their hearts will be compassionate and that their minds will be opened to what might be best for Ford and his circumstances. We believe that the doctors we are working with currently are intelligent with a vast amount of knowledge and experience. We are praying that they will draw from that wealth and be able to "think outside the box," as needed, and look at all possible alternatives. Also in our prayers we are asking for the ability to communicate our feelings and concerns in a clear, concise manner and to be able to do it without offense.

If those of you reading this feel so inclined, would you include us (or continue to include us) in your prayers, please. We are grateful to you and for you.
Thank you from the depths of our hearts.

10 April 2009

Fresh Air

Ford is doing okay this evening. We were able to get out of the house a couple of times today, once to pick up our daughter coming home from college. Her roommate lives in SLC and was willing to bring her and all her stuff down from Rexburg. We met them in SLC and transferred all her belongings to our car and came home.

Then this afternoon we were able to go up to Draper for a short outing to celebrate our second daughter's birthday. Ford was able to throw and catch a frisbee with one of our sons-in-law. He has really missed being able to play frisbee on a regular basis.

Ford has enjoyed visits from a couple of neighbors and friends. As long as whoever comes over is healthy, it is okay to visit. It is also good for him to see and visit with someone else besides me. The majority of other people he has been in contact with the last little while are mostly medical people, mainly those poking, prodding, or taking blood, x-rays, or scans.

Last night Ford has some difficulty getting to sleep. He was kind and tried to let me sleep. By the time I was aware of his problem, it was nearly 3 am. We needed to try a couple of different things (Melatonin, herbal Bedtime tea, and some breathing relaxation techniques) before he was finally able to drop off around 5 am. We have an understanding that if he will wake me up if he is having some kind of problem, I can get to sleep easier (and I usually do). However, last night he was trying to be considerate of me and ended up not getting much rest.

08 April 2009

Stand Down

Around 10:15 am, before the doctor could get back to us, the huge red circle disappeared. When the call came, if the circle had not have been gone, it could have been any number of things all which could be looked at in the ER or the new Instacare. Instead, Ford had an anti-allergy medicine and his regular Lovenox injection. Just odd.

Warning, Warning, Warning

The title for this blog came from scenes most all have seen where the lights start to flash and the voice is sounding, "Warning..." alerting us to an impending change in status.

Well, the lights in my senses are going off and that voice is sounding in my head. The delay in chemo treatment is going to turn out to be a good thing for now, I believe.

This morning when it was time for Ford's Lovenox, we saw that he has a large red circle (all color filled in) about 12 inches in diameter on his stomach. Imagine the face of a clock with the belly button as the center where the hand of the clock are attached. Umm. We're betting that this is not a normal thing. We now have a call in to the doctor waiting to receive some instructions.

Also, we have a bevy of other questions stacking up resulting from yesterday's experience up at the HCI.

If anyone reading this blog has experience, knowledge, or opinions about Neulasta, will you please comment. If you would prefer not to have your comment posted, let us know that also and we will keep it private.

Thank you all a TON! And please keep Ford in your prayers!!

07 April 2009

A No Go for Today's Treatment

Today we started our day out at the Guest House on the U of U campus. We stayed overnight so we could avoid the stress of traffic and early morning rush hour. We went through the preliminaries of checking in, getting the IV put in and blood tests done. Then weight (Ford weighed in just 2 pounds less than his normal weight was before he started losing weight walking Jake), temperature, BP, and so on. We didn't have to wait long before Dr. Pollack came into the room. He checked Ford over, asked questions, commented on how Ford has not lost all of his hair, and then looked at the blood results. Turns out that some of the levels were not what they need to be so today's chemo treatment didn't happen. We go back next Tuesday and try again. The doctor doesn't want to take any risks especially the way things have gone so far.

So that knocks everything back for one week. Ford was actually relieved. He was more tense about this treatment than the other two. He and I were both "off" for some reason today. I don't know how many people have experienced a day or so like that where things just don't seem to be lining up right or the feeling isn't the same as you're used to. That was today. A very fitting day to have the chemo treatment not happen.

The weather is beautiful. The traffic wasn't too bad coming home. And, I got home in time to go to a wonderful neighborhood cooking demonstration on Mexican food. I love Mexican food! And I adore the woman that was doing the demonstration. She was one of the key people that made me feel at home and loved when we first moved into this neighborhood 10 years ago next week. She loved my children. She always greeted me with a wonderful smile and a very cheery hello.

I learned a lot and loved tasting the samples. It was also very nice to be able to visit with many of our neighbors and catch up on what is going on with them. It is amazing how much has happened and gone on in the time we have been more or less isolated.

Ford is now happily working on his computer and getting things done for his job at BYU. He is glad to be back home.

05 April 2009

Both Ford and I are doing fine today.

General Conference had so many good messages of instruction, hope, and faith. I particularly think President Monson's remark that "the outlook is as bright as our faith" was good counsel.

Tomorrow will be a full day getting done what needs to be done for Monday plus preparing to go to SLC for Ford's treatment.

Here is another quote from Sister Hinckley's book, Small and Simple Things, p. 61:
"Each day brings its own challenges, but life would be a total waste without knowing what it is all about and where we can get help."

04 April 2009

Odds and Ends

All-in-all today was a pretty quiet day. Ford had a very good night's sleep. His weight was up a pound. Then it was shot time. Ugh.

General Conference was good. Ford programmed before it started, during the noon break between sessions, and then afterwards until dinner.

It looks like my cold is beginning to wane. It will be very nice not to need to wear a mask all the time. I sit with Ford while he eats and then I eat later (I can't eat with a mask on and I don't want to expose him especially while he eats) so it will be very nice when the cold runs its course. Sleeping in another room has had some advantages, but our bed is more comfortable. It all may seem a bit extreme, but so far Ford hasn't caught what I've had. Every day closer to Tuesday gives him a better chance at building those WBC.

Ford received another hat today. I think I like this one best. When DD#3 (darling daughter) gets home next week with her camera, we'll try and get some pictures posted of Ford and his hats.

I read this today and thought it was worth sharing:

"There are some years in our lives that we would not want to live again. But even these years will pass away, and the lessons learned will be a future blessing." (Small and Simple Things, Marjorie Pay Hinckley, Deseret Book, 2003; p.102.)

03 April 2009

Three in One and One for All

Ford seems to be doing quite well. He has made it a little over two weeks without being in the hospital and ten days without visiting the emergency room. We have taken every step that I can think of (short of me moving out for a few days) to keep him from getting the cold that I have had. Nurse Debbie called on Wednesday to check up on him and said that she had seen lower WBC counts at this stage of the chemo treatment. I am amazed.

His energy level is slightly increasing. He has been working out every day on the stationary recumbent bike. He has been able to work at his BYU job for several hours a day. And his appetite is increasing. His weight is holding steady (he has gained a little over 11 pounds since 4 March (the day he got home after the seizure incident and hospital stay for pneumonia).

He is still having some problems winding down and falling asleep at night, but between the Melatonin and some herbal tea, he is able to get several hours in. Between 8 & 8:30 am every day is Lovenox time. It is still the time of the day I loathe, but we are getting the job done (at least I don't cry before,
during, or after anymore. Another blessing we are receiving because of prayers). As I lay out the alcohol wipes and other paraphernalia, Ford puts on his little sleep mask (thank you, Carol) so I don't have to look into those big brown eyes. When the shot is done, he always says thank you. That is his sweet way of reminding me that although it is may be painful to him, it is saving his life.

Round 3 is scheduled for this coming Tuesday, 7 April. We don't have to be at the HCI quite as early as we have in the past probably because the time required for the treatment is getting less.

It is an event-filled week. Monday is the anniversary of the day Ford proposed to me, Ford has his 3rd treatment (halfway done), daughter #2 has a birthday (she is looking great as the baby grows), and daughter #3 comes home for the spring/summer from BYU-I! Woohoo to it all!! In fact, this whole month is filled with good things. Saturday/Sunday is the LDS General Conference. I am soooo looking forward to hearing the counsel from the General Authorities. Then comes Easter weekend, one of my favorite times of the year.
Three weeks from today is the birthday of our Grandbaby #1 (turning 2 years old)! The 28th is chemo treatment #4. And, the 30th of April is Ford & my 26th wedding anniversary (happy engagement anniversary to B & J Stockdale, too).
This will be a great month!

And to end this blog, Ford reminds me that we are tired at the beginning of April because... it was a long March. (-: