04 December 2009
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!
13 November 2009
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!
03 November 2009
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!
15 October 2009
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!
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.
12 October 2009
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.
08 October 2009
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!
24 September 2009
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.
08 September 2009
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.
31 August 2009
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.
26 August 2009
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!!
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.
10 August 2009
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.
06 August 2009
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.
05 August 2009
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.
01 August 2009
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.
30 July 2009
David A. Bednar, "Pray Always," Ensign, Nov. 2008, 41.
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.
28 July 2009
"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."
26 July 2009
Joseph B. Wirthlin, "Come What May, and Love It, Ensign", Nov. 2008, 27.
23 July 2009
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!!
21 July 2009
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.
19 July 2009
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.
17 July 2009
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. (-:
16 July 2009
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.
15 July 2009
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.
10 July 2009
08 July 2009
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.
01 July 2009
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?)
25 June 2009
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.
21 June 2009
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.
18 June 2009
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.
16 June 2009
14 June 2009
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. (-:
10 June 2009
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.
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.
08 June 2009
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.
05 June 2009
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!
03 June 2009
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.
01 June 2009
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.
31 May 2009
29 May 2009
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!
28 May 2009
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.
26 May 2009
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. (-;