DAY 100

All,
Today is another milestone; Day 100. There have been many milestones and hurdles since the transplant. All have been chronicled here. The two I most looked forward to were release from the hospital and Day 100. Going home to Manteca was third on my list. Now, and for the foreseeable future, I will be coasting – determining what life will be like from here on out. How much of the lingering effects of what my body has endured will remain, and to what degree? I know I will be going to San Francisco every Tuesday for a clinic visit. At some point, the visits will become bi-monthly, then monthly. I don’t know if GVH will rear its ugly head, or how much medication I will require. I don’t know what the side effects of those will be. And since my last post, there is another issue. An MRI revealed a “bulging disk” in my back which causes a lot of localized pain if I move wrong. It is improving since muscle relaxers were prescribed last week and I’m mobile again. I have started walking, and while distances are still low (1.4 miles), commitment is high. I still can nap easily if I sit still too long. That’s likely a function of drugs I’m taking combined with not enough sleep at night at times.

The clinic visits continue to show progress. The numbers we use to evaluate levels of substances in the blood stream are good, liver and kidney functions remain strong. Immune system is still suppressed so exposure to sunlight is problematic, as is contact exposure to viruses. I still look like a hairless Ted Kaczynski when I leave the house. See the attached picture! The bone marrow biopsy is still in limbo, but I’m confident Dr. Linker will get it scheduled when he’s ready.



We have had several visitors recently; Laura and Chad visited just before we moved home as did Stephen. Michael and Haley were here last week. These are our “other children” and their friends. As always, it’s a boost to see you guys. Barrie Lane visited and we had a dinner out in San Francisco.

About that dinner with Barrie: Beck and I took him to a place we’ve been many times before. An inexpensive Italian place with friendly staff and big portions of good food. On this occasion, we were seated not five minutes when they seated two ladies next to us one of whom had a dog on a leash. When our waiter arrived, he was unaware and equally surprised when advised we were seated next to a dog. Management huddled, the ladies were talked to and they responded that this was a “service dog” (hogwash), it had its shots, and it was harmless. I thought all it had to do was lick its butt, then kiss me, and I’m dead. I kept my thoughts to myself.

Long story short, the restaurant wouldn’t ask them to leave and said they had no other tables so I put on my mask. Eventually, we were reseated in another part of the restaurant, and they didn’t charge us for the meal. Most importantly, I didn’t get sick. That lady was the single most insensitive, entitled ______ I’ve ever come across. That night I dreamt she was hit by a bus as her “service dog” sat placidly watching from the curb.

Some personal messages: to Lisa Schnaidt for her letter received 2 weeks ago with the message “Do Not Open until May 30.” Thanks for remembering. To Maria, as always on top of everything with her cheermail of today. To sister Linda for the balloons honoring my “graduation.” And a huge thank you to Lenny, Cecil, Wayne and Steve Sr. for all those trips to my place to fix all those little things (and some not so little). We could not have done them ourselves. Thank you, thank you, thank you. Love you all.

To the rest of you, the count of cards is over 100, the calls and emails are countless. The support has been tremendous. Thanks to you too. Your energy and enthusiasm are contagious. We love you all.

And finally, Dr. Fye, the Rheumatology and Pain Specialist at UCSF to whom I was referred and who was instrumental in my diagnosis sent his patients a letter this week. He has been diagnosed with pancreatic cancer and is leaving his practice. Please add his name to your prayer list as we have.

Onward to the next milestone: ONE YEAR

Homeward Bound

Waiting and Waiting

All,
Beck and I spent more than 5 hours at the clinic today. It can be very frustrating when all but about 30-40 minutes of that time is waiting, waiting, and waiting some more. That’s the bad news. The good news is that I have passed another milestone. I am now on once a week visits which means WE CAN GO HOME!

Rick & Cecil after steaks

For the record, we went home last Friday for the weekend. That was the first time I’d been in Manteca since Feb. 4 and the first time Beck has spent more than 24 hours there in that time. As we drove up Main Street from the freeway to our house, we both were a little depressed. San Francisco it ain’t! It IS home however, and we adjusted quickly. Our neighbor Cecil came over for dinner and I BBQ’d for the first time since forever. Now it seems we will be back to Manteca and out of our apartment next week. So much to do, so little time.

Nothing about my driving please

Beck has let me start driving again. Another milestone I guess. I ran some errands in Manteca last weekend, then drove to San Francisco and have been driving around here since. Beck has learned her way around quite well. Me, not so much. I haven’t paid much attention all these weeks, so she has me on a crash course. Good luck with that one. I get my sense of direction from my mom (always refers to the directions), Beck got hers from her dad (was reading maps at an early age). I figure if Beck doesn’t know where we are, my GPS will!

The clinic visit was uneventful. The steroids are being reduced again from 30mg daily to 25. I am having some aches and pains that we are blaming on the adjustment. I also have some issues with age related problems with my back. I am slowed down a little, but not stopped and not deterred. We still are unsure of which of the issues I deal with daily will improve or go away completely, but I can live with it as long as I can keep pushing for more strength and stamina. Doctors are encouraging me to do so. I must admit my pleasant surprise at not having to be hospitalized again after the transplant. Not everyone is readmitted, but most are. I feel very lucky to have had the experience I’ve had and not something much worse. I’m convinced all of your caring loving thoughts and prayers are responsible. Keep it up.

A bone marrow biopsy looms sometime in the next few weeks. I’m told it will be done in the operating room under anesthesia. Scheduling is an issue I guess because those pesky surgeons don’t want to give up the OR. There will also be an MRI to check on my neck. Neither of these will prevent us from moving next week however. We leave here with mixed emotions. Two weeks ago I wasn’t ready. I am now. It’s good to reach this point and get on with life. My weekly visits will continue for a period as yet to be determined, then bi-monthly for awhile. It means the docs are comfortable with my progress and feel it’s safe to reduce the visits. Fine by me. For now, it appears our next blog will originate from Manteca. Barring any emergencies, ALL my medical work will be done at UCSF. In case of an emergency, UCSF will be involved and may even call the shots.

I’m told I look good. I know I feel good. My quality of life is pretty good. I am, however, a long way from well. It will be a minimum of another year before we have a handle on my requirements for the immunosuppressant . Sunshine is not my friend in that period. I have to cover up and/or slather sunscreen all over me as a very small amount of sun can do a great deal of damage. I’m told 10 minutes a day of unprotected sun is MAX. If I do that, eventually I will begin to tan and I will begin to develop some natural protection. It is critical that I don’t burn as GVH will attack with a vengeance if I do. I learned that when I covered everything but my hands. They got pretty red and required some topical steroid ointment to rein it in. Lesson learned. I now wear gloves to go with my hat, long pants, long sleeves and dark glasses. With a hoody I look just like DB Cooper, the hijacker who bailed out somewhere between Seattle and Portland some 30 years ago and was never found.

So from San Francisco with love, we bid you adieu.

UCSF from Conservatory of Flowers

Sunset in The City

All the Latest From Funston Ave.

Pictures have been taken throughout our jaunts around The City. This was taken in The Castro District…unfortunately we are not registered voters in SF county or our names would have been added to the petition!

All,
The last two weeks have been somewhat eventful, although events seem to unfold slowly. I mentioned I was in a study to determine the efficacy of injecting manufactured stem cells to fight non specific inflammation. In my case, the new stem cells would migrate to the point of GVH and fight back. It’s a double blind study meaning that none of my medical team knows whether I’m getting a placebo or the stem cells. However, independently of each other, both the Physician’s Assistant and Dr. Linker said they think I am getting the REAL thing. They base that assumption on the fact that my GVH has responded in a fashion inconsistent with expected results given normal procedures they have provided. Either I am a wunderkind or I’m getting the good stuff. In any case, they told me today that my GVH is in complete remission. They also told me that my GVH started earlier than anyone expected and was worse than they thought. Coulda fooled me. It wasn’t much fun, but it was nothing like I expected. At any rate, I had the final infusion today. Now they will follow my case for another year. Most of that will be simple blood tests that are being taken regularly anyway. There will be another CT scan and an EKG, both of which are non-invasive. I do need another bone marrow biopsy in the near future. I told the medical team that I would not sign an authorization unless I was knocked out. They promised to schedule an operating room. Yeah!

We’ve been getting out and walking on a regular basis, doctor’s orders. That generally means long pants, long sleeves, hat and mask. We totally neglected my hands. Last Friday, they appeared burned and GVH was apparent to the doctor. I immediately started using sunscreen which I should have done earlier. Yesterday Beck and I went to REI and bought 2 new better-covering hats and 3 pairs of gloves. I really look like something from who-knows-where as I wander around with next to no skin showing and with no ability to leave a finger or handprint. One has to VERY careful when entering a bank in that get up! It will be interesting living in an area of the country where the sun shines and summer temps hover around 100 degrees.

McCarthy’s and Beck at Pacific Ocean

Who are those masked people?! (Nufer’s)

The McCarthy’s visited last weekend. We had a wonderful time. Saturday we walked Farmers Market at the Ferry Building, on the beach at the Pacific, down the Marina to Fort Point , and finally thru Chinatown; a total of 6 miles. I was done at the end. It was great to spend time with our good friends. By the way, apologies to the Nufers, who visited the end of March and were omitted from the list of visitors on the last blog. It was terrific seeing them too. Thanks to all of you who have made the trek.

Beck and walking buddy in GG Park

In Chinatown shop trying on wares

As for me, I feel good. The steroids have been reduced from 90mg to 60mg to 40mg daily currently. I expect them to come down again next week. The TAC (immunosuppressant) has not been tapered as yet and may remain where it is for more than a year. I may never be off it, but only time will tell. As long as I keep taking it, my immune system is being held in check. The more I take, the more vulnerable I am. The hope is that I will be able to get it down to a low dose or none at all. The variable is how hard Diane’s system wants to fight my organs. At every turn so far I have surprised the docs, maybe this will be another favorable surprise for them.
The steroids have created glucose issues. I monitor it 4 times a day and administer insulin as needed. It’s not a big deal for me to do it, but I’m hoping it will be controllable with diet as time progresses. By the way, I’m eating like a horse and my weight today was 1.8 pounds more than when I left the hospital 7 weeks ago. Makes Beck NUTS!
I have some neuropathy in the balls of my feet and in the left little finger, and the top of my left hand. This varies from a tingling sensation to profound numbness. The latter is rare, the former is constant; nothing that will slow me down much though. The concern is staying healthy.
In summary, my blood counts are “rock solid” and my GVH is in “total remission,” according to Dr. Linker, and I feel good. I’m getting exercise and we still occasionally get out and about. Beck is doing well, and we both feel a little guilty at times. Is this real, or are we on vacation? Life is good. We’re still not sure when we will be returning to Manteca. We don’t expect to get a warning. We expect to go to the clinic one day and they’ll tell us “We don’t need to see you twice a week any more, once is sufficient. You can go home now.” It will be met with mixed emotions. You can’t do in Manteca what you can do in San Francisco, and the scenery is much worse. On the other hand, it’s home.
That’s it from here. Keep those cards and letters coming, and if you want to get a personally guided tour of San Francisco or just have a fine meal, give us a call. Again, I don’t know how much longer we’ll be here so call soon. Our love to everyone.

Outside Ferry Building

Emily and Rick at “the big one”