25 June 2009

Today's News

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

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

His appetite is good and his weight is normalizing.

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

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


21 June 2009

Father's Day

Happy Father's Day!

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

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

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

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



18 June 2009

Graduation Day at HCI

Time to catch up on the events of Tuesday.

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

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

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

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

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

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

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

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

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

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

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





16 June 2009

Done

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

More later.

14 June 2009

What's Ahead

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

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

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

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

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

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

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

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

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

Happy Sabbath!

10 June 2009

Choices

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

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

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

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

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

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

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

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

Same Old Same-old

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

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

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

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

08 June 2009

Something New

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

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

05 June 2009

On an Upswing

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

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

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

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

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

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

03 June 2009

Infinity and Beyond

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

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

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

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

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




01 June 2009

Risky business

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

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

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

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