Monday, December 20, 2010

Amped Up

As Emeril would say, BAM! We're amping it up for the holidays. Velcade dose doubled, steroids quadrupled, and the treatment is now twice a week, as opposed to once a week. Rifkin and I made this decision today after first looking at my blood counts, all of which were "excellent" and considering that my IGGs and M protein were rising. Rifkin agreed with me that we want to try to decrease those myeloma numbers in advance of receiving my brother's white cells next month to give them the best chance of choking down this myeloma. I jokingly suggested that we first call my family to get their input as they're going to have to live with me during these next few weeks. I was on this dosage 4 years ago, but it was the first course of treatment following my first transplant. A whole lot of toxic waste has passed through these veins since then and I don't tolerate this stuff like I used to. But I was the one who initially suggested it, so I wasn't going to back down when Rifkin agreed. It should be an exciting Christmas at the Patterson household this year.
Joy and Peace to all,

Sunday, December 19, 2010

Tired of Viral Infections

A couple of years ago I met a man at the clinic who had had an allo transplant. He told me he was doing well, but tired of always battling some infection. I know what he means. This immunosuppression makes one vulnerable to all bugs. After recovering from the shingles, without any lasting side effects I immediately contracted RSV (respiratory synctial virus), a viral infection infants and young children often get.---oh yeh, and immuno suppressed people. I had this about four years ago and it took 2 weeks to get rid of. I'm about 10 days into this one. I've decided I need to curtail my encounters with larger groups of people. Not that I was a big socialite, but I have let down my guard and I think it's time to put the barriers back up.

The downside of these infections is that I can't stay on my maintenance regime. I've only had 2 weeks of velcade over the last 6 weeks. The result is that my IGGs have risen to 2800 and M protein is up to 2.0. These are not alarming numbers, but in the face of an allo transplant that is supposed to give me the chance to have the myeloma eradicated, we're moving in the wrong direction. Fortunately, I will be returning to MD Anderson soon for my DLI (Donor Leukocyte Infusion--an infusion of white cells) from my brother. I am scheduled to receive 3 infusions over the next couple of months. Mike has been to Houston so often in preparation for these infusions that I told him we should rent him an apartment there. He voices no complaints. I can't say he's a saint, but he's one hell of a brother.

We've got our tree up, Catherine will be here in a few days and we're planning a quiet family Christmas. We wish you all a Merry Christmas, Happy Holiday, or whatever you choose to celebrate.

Tuesday, November 30, 2010

The Roids Are Back

I got juiced with steroids today and it seems I'll be up much of the night. Counts are good. White count at 4.2, which is really good for me (3.0 is normal). Hematocrit is at 34, which is also very good for me (normal being 40+). I'm going to a shot of velcade and steroids every week until we head out for MD Anderson for my infusion of additional white cells from Mike. This weekly regime is at my request (god Rifkin must be tired of dealing with this type A personality). I asked why we were on an every other week regime when I still had residual myeloma in me. He immediately capitulated to a once a week regime. When I was taking depositions I never had such success with my interrogations!

Everyone is doing well. Nothing new to report. The shingles have calmed down although I still have the nerve pain in the rear end. Oh, the indignity of it all. These past months have been good in that they have allowed me time to discover that I, in fact, can live with the many limitations this cancer and its treatment have bestowed on me. While I know I have been dealing with them constantly for the past five years, it's mostly felt like I've been moving from one crisis to another. These last months are a relief in that I am not in nor anticipating any impending major assault. Learning to live with the many issues I'm left with (mainly as side effects from the chemo, like loss of smell, taste, neuropathies, daily indigestion, fatigue, etc.) it is always a challenge, but as Susan regularly reminds me, "you're alive." And to that I say, "you're right." And that's that. I'm alive, I'm trying to stay active, I always so grateful for everyone's support. The gratitude for my brother Mike's unselfish act of being my donor only deepens with time. He's had to make multiple trips to Houston, administer shots at home, endure bone pain and for no personal reward. What a brother! With that kind of support how could I not be happy. A good frame of mind for the upcoming holidays.

I wish for you all the same peace and happiness I feel every day.

Thursday, November 11, 2010

Shingles Belong On A Roof

Ever since I was diagnosed I've taken medication (acyclovir) to prevent shingles. Shingles arises from the same virus that causes chicken pox and shares many of its same awful features, including the blistery itchy rash. You only get shingles if you've had chicken pox. The virus then goes dormant in your nerve roots. It can "wake up" in older and immune suppressed people and the virus shows itself as shingles. I've been on automatic refill for this drug at my Target pharmacy. Well, they didn't fill it last month and I didn't notice that I was out, given my 12 or so drugs I take daily. Three weeks of no protection and the opportunistic virus rears its head and bites me in the ass. Unfortunately I have the rash and the significant nerve pain in the most inconvenient of places--my left buttocks! Are you kidding me? I want to scream, "what next" but I'm afraid of what could be next. I'm constantly reminded of John Lennon screaming, "I've got blisters on my fingers," on the Abbey Road albumn. My refrain: I've got blisters on my ass.

Although this can be a very painful, extended infection I have responded well to the high doses of valacyclovir I've been taking since Monday. Keeping the fingers crossed.

Mike has completed his first visit to MD Anderson in preparation for the donor leukocyte infusion in January. Since he is the first one on this protocol he claims he spent one of the days "getting them organized." He says that after his next visit he will have them in shape to handle my visit. He is a Type AAA personality and now I have his blood running in me.


Thursday, October 28, 2010

In The Eye of the Beholder

Starting at the end of the story: I'm sitting in the waiting room at the clinic on Monday waiting for my velcade shot. Nurse Patty, whom I've known for most of my years of treatment comes in, chart in hand, announcing, "Dan? Dan?" I waive my hand and stand up to accompany her into the treatment room. She whispers to me, "oh, I was hoping it wasn't you." I look at her quizically. "What are you talking about? Is something wrong?" I had already received my blood counts for the day and met with the doctor. I was told everything was fine. She says, "you're getting velcade. I'm so sorry." I again respond, "I don't understand. What's wrong." She says, "I thought you were done with treatment." "Oh, you thought I was in remission and have now come out of it?" "Exactly," she says, "you looked so good, and still do. You don't look like you've come out of remission." I told her that I haven't had a day of remission in 5 1/2 years and was quite excited about starting velcade as it might help reduce my residual myeloma before my donor leukocyte infusion (DLI). So, she feels bad and I feel good about my getting treatment. And that's the way it goes.

Much to my surprise, they boosted the velcade with steroids once again. A much smaller dose of both, I'm told, although I certainly felt the effects of both in the past 2 days. I think it only goes to show how strong this stuff is. My body has handled some fairly heavy doses of chemo over the years but now that I've had a chance to clean out for a few months, I can feel its power. That's good I suppose.

Mike starts his injections in a few weeks so we're on track for my DLI at MDA in January. Rifkin finally gave me permission to go to the health club--with a number of restrictions. Still it feels good to be "allowed" to start waking up my muscles. I'm not sure which has a larger circumference, my biceps or my ankles--the proverberial 98 lb. weaking. It's all Big Fella's fault.

Happy Halloween to all.

Tuesday, October 12, 2010

Big Fella Unleashed

Those of you who grew up with the Big Fella, Mr. Pete and Fuzz will understand the potential repercussions associated with releasing the Big Fella's cells in me. Although I was told that I could be on anti rejection meds for years, I'm off them after six months. The anti rejection meds are now on the shelf. We'll have to be even more vigilant for signs of GVHD (graph vs. host disease). Although I think the fact that I haven't had any makes it less likely, I'm told that's not the case. Doesn't make sense to me.

My counts are very good. White count 3.2 (in normal range); hemoglobin 11.9 (normal is above 14); and hematocrit 35 (normal is above 40). I don't think my numbers have been that good since I was dianosed.

I'll be starting another chemo drug, velcade, in two weeks, in an effort to bring the myeloma levels down further, or at least to keep them in check.

The vaccine trial I've discussed in previous posts is a randomized trial, meaning about 50% will receive the vaccine and 50% will not. They told me when I was in Houston a couple of weeks ago that I was randomized to be in the control group, i.e., I won't receive the vaccine. I will, however, receive another infusion of Mike's cells in early January. This is called a Donor Leucocyte Infusion (DLI). If I was participating in the vaccine trial I would be getting the vaccine along with the DLI. Mike still has to go to MDA three times between November and January to receive growth hormone shots (don't tell Roger Clemens). He also has to give himself six of these shots during that same time period. The DLI has been known to bring people into remission with other blood cancers, such as leukemia. I'm unsure of its success in myeloma patients. If I don't respond to the DLI within a few months, then I will be eligible to receive the vaccine. So worst case, I'll have to wait an extra 4 or 5 months to get the vaccine. Best case is I won't need it if the DLI brings me into remission.

I really don't know how to describe my feelings about achieving stability after 5 1/2 years of rigorous treatment. Disbelief? Fear that it will all come crashing in? Hope? Bewilderment? Excitement? Caution not to get too hopeful and then be disappointed like so many other times? All of the above and more. I have faced my mortality and prepared myself for the end, endured some very painful episodes, and learned to live with my messed up body--my feet are numb, I have no ass, my hair keeps falling out, I can't hear and I live on imodium (anti diarrhea med). My mind has taken me to some very dark places. I don't feel that I even know how to deal with the possibility of a life without constant treatment. Could I really be one of the lucky ones? But I am one already. That's just a glimpse into my reaction to six months of stabile disease. Perhaps Jerry Garcia said it best, "what a long strange trip it's been."*

*For all you deadheads and aging hippies, the line, "what a long strange trip it's been" came from the Grateful Dead's song "Truckin", and was actually written by Robert Hunter, a friend of Garcia's but not an official member of the band. The line is also the title of the Dead's compilation album released in 1977. Which reminds me maybe I need to once again live by the motto of that era and just keep on truckin.

Dan a/k/a The Fuzz (circa 1970 when I had hair)

Thursday, October 07, 2010

The Incredible Shrinking Man

I forgot to mention, in the last post, the varied, but discouraging, results of my height measurements. I had 2 measurements taken by 2 different nurses within 20 minutes of one another. First it's important to know that each of them could not have been taller than 5 feet, with heels, so how they could see where to place the measuring bar is beyone me. Nonetheless, the first measurement had me at 5'7"; the second at 5'7 1/2". YIKES. Either one is shrinkage. In March 2005 I was 5'11 3/4". In July, after my spine collapsed, I was 5'8". I'm continuing to shrink--but only in stature. In this way, I guess I have many more people to look up to.

Tuesday, October 05, 2010

Time in Texas

Much to say and most of it good. I've spent the better part of the last 2 weeks in Texas. First, at MDA and then a return trip to Tyler for my nephew, Kyle's, wedding. (Kyle is Mike's boy). The wedding was a great celebration. Kyle has married a beautiful young lady, Gennie. All of Mike's siblings (Tom, Kathy and me) made it to the wedding along with our mother. We (Susan, Catherine, Julia and I) spent many vacations with Kyle and his brothers, skiing, canoeing, going to the beach. I enjoyed seeing all these guys now that they've become young men. While some would say it makes you feel old, it made me smile the entire weekend. I so appreciated that I was able to participate in this life event for Kyle and his family. The last five years have made me very grateful to be able to spend time with my family. Tom has a few pictures from the wedding posted on his blog:

The testing at MDA went without a hitch, although it sure felt like they jammed a number of tests into the 3 days. I met with my doctor at 4 p.m. on Friday and went through everything. The IGGs have dropped a bit to 1800; M protein is 1.5, down from 1.9 in June when I was discarged ; blood counts are good although white count is a bit low; pulminary function is normal and improved from June, bone density is normal, including in my back which is a nice improvement given my numerous compression fractures.

We reviewed the vaccine trial and then they "randomized" me. Do I get the vaccine or am I a part of the control group? Since this is not a blinded trial, they told me--no vaccine, the computer randomly placed me in the control group. This means that I will receive another infusion of Mike's lymphocytes, but this won't include the vaccine being made from my plasma. If I don't respond to Mike's cells, then they will give me the vaccine. So being in the control group means, at worst, I have to wait a few extra months to get the vaccine. Mike will be starting the injection process to prepare his cells in November. I'll get the infusion sometime in January. In the meantime, I have to see my doctor here on a weekly basis, and go to MDA every 3 months.

While I was spending time in Texas, Susan took off for Vermont to spend a few days with close friends who have moved east. Then she headed across the Atlantic to spend some time with our good friends, the Coyles, who live in Paris. To say she needed a break from me would be an understatement. She's spent 8 months over the past 18 months being my 24 hour caregiver. That's enough to drive anyone crazy. A trip to Paris seemed like an appropriate reward for keeping her sanity. We are now both safely back at home.

Our best to everyone.

Monday, September 20, 2010


On the way to MDA on Tuesday for 3 days of testing and a meeting with my doc. This is my 6 month checkup (6 mos. from transplant) and since I have had no significant issues since being discharged in mid June I'm not expecting any surprises. Mike was there last week signing the paperwork to commence the vaccine trial. Once I sign the last documents they'll begin making the vaccine (which will take about 3 months). Then a 2 month period for Mike to receive the vaccine and then I get more of his cells. I'll give more detail once I return next week.


Monday, September 06, 2010

MDA, mountains, and a birthday surprise

First the numbers report: IGGs 1909, M protein 1.5. These are essentially the same as they were in late March and June. Stable is the word. White count has come up to 2.8, which is better than it has been in some time. Not sure why, but we'll keep our fingers crossed.

My first return visit to MDA will occur in about 2 weeks. This is my 6 month checkup and will involve 3 or 4 days of testing and a visit with my doctor. They will also review the protocol for the vaccine clinical trial I will be participating in. It will take about 2 to 3 months to make the vaccine. The production will begin once MDA reviews the protocol with me one more time. Then Mike will start his visits to MDA to begin the process of vaccine injections. That will take 2 months. I will join him for the last visit as they will harvest his cells and immediately give them to me. Then I have about a year of visits as they monitor my response. If it is not what they expect they can give me a couple of more injections of Mike's cells. This all has its risks as outlined in the 10 page informed consent. But I don't have any other options, so we go forward.

In the meantime I am trying to have a life. I'm able to ride up to 12 miles on my bike. I wouldn't win any races, but the exercise is no doubt good for me. This is complemented with twice a week physical therapy sessions. I am too embarrassed to admit to the low amount of weight I am working with, buy my therapist assures me I will improve.

My brother Tom and I took a short vacation last week. Now a guy like me who does mostly nothing doesn't need a vacation. But Tom did. So we headed up to a cabin on a mountain lake in the Colorado mountains. The setting was gorgeous. My activity wasn't any greater there, although I did some hiking (walking?). I got enough of a taste that I'm hoping to be able to climb a fourteener next summer (a 14,000 foot high mountain for you non Coloradoans). I will have to see some improvement in my neuropathies, leg strength, and lung capacity, but one must set goals. It'll give me something to work on over the winter. (I had begun "bagging" fourteeners a few years before I was diagnosed and managed to reach the top of 8 peaks. Only 44 left to go!)

And finally, the birthday surprise. Last Friday was my 58th birthday. Julia requested that we stop over at her apartment before we went out for dinner, as she wanted me to open my present before we went to dinner. As we entered her apartment, I saw a large box, wrapped in birthday wrapping paper. I pulled the paper away, lifted the top and saw an old blanket. As I pulled the blanket up, out jumped......Catherine, yelling "Happy Birthday." I can honestly say it is the best surprise of my life. We had a great dinner with the girls and Tom, followed by a relaxing weekend.

We continue to be very grateful for all who have carried us these past years. I feel like I am reaping the benefits this year as I feel better than I have in 2 years.


Wednesday, August 18, 2010

You Can't Make This Stuff Up--Amended

I've been calling my health insurer trying to get some explanation regarding a claim for reimbursement for mileage and some costs for my donor. The claim office says "call the transplant center". The transplant center says, "we don't handle claims, call the claims center." Today I finally get someone who will talk to me. After much cross examination by me I learn that in fact my claim has been processed and a check has been issued. Fine, so I ask, "to whom was the check made payable and where was it sent." The answer: "the check was made payable to 'Transportation Meals and Lodging' and it was sent to [the insurer's] PO Box in California." Naturally I asked if she had a phone number for this 'Transportation Meals and Lodging' fellow as he had my check and I wanted it back. No such luck. But she has initiated an "investigation" to determine just what happened with my claim and check.

I've recontacted the insurer and told them that I'll make this easier for them. I'll just change my name to Mr. Transportation Meals Lodging and they can send the check to me and I'll cash it. Not being one to stand on formality, for all my friends out there, you can just call me Transport for short.

Monday, August 16, 2010

The nose knows

My counts remain stable. Although still low, my white count has been stable enough these past 2 weeks (2.7 today) that I've avoided the neupogyn shots. Red counts and platelets are also stable. My very low dose revlimid maintenance regime (.5 mg every other day) seems to be working and allowing my counts to recover. They'll check the myeloma levels next week (results in 2 weeks). Health insurance has approved my donor lymphocyte infusion at MD Anderson so Mike and I will be returning to Houston soon for a week or so of workup and yet another infusion of Mike's cells.

Having lost my hearing and my sense of taste, I've now begun to suspect my sense of smell is also impaired. It has taken some time for me to realize this but, I haven't been able to smell the wonderful meals Susan is constantly preparing. And yes, Rifkin confirmed today that all the chemicals I've received can obliterate one's sense of smell. He asssures me, it "usually" returns. He's said the same thing about my neuropathies and rather than improving they are getting worse. We are experimenting with more neurontin but have not yet found the right dosage to relieve the pain. Fortunately I can ride my bike because I find I don't like to walk as my feet start throbbing and tingling after 10 minutes. As for the loss of smell and taste, I find that I am driven to tastes on the edges, like spicey and sweet. Now I know why I told Susan the other day that I was tired of chicken--too bland. So tonight we had hamburgers with jalapenas in them. Yes! Of course this diet complicates my digestive issues.

While I make fun of the loss of smell, it is a serious issue. It presents life challenges, such as not being aware of dangers such as gas leaks, fire, or spoiled food. Having now researched the risks I just realized that I've had this problem for awhile and it seems to be getting worse. Over the past 2 years I eaten some bad meat, which made me quite sick. Julia and Susan chewed me out after each incident for being so stupid. In fact, they have been quite diligent in throwing out any cold cuts that might be old before I can get my hands of them. My awareness is now heightened but I do hope this follows the "usual" course as Rifkin suggested and goes away soon. Not being able to fully appreciate Susan's cooking would be quite a loss.

That being said, I continue to feel and believe that we have turned a corner here. These issues are minor given the minefields we've been through. I can live with this stuff.

To life,

Wednesday, August 04, 2010

That Brain Thing

Mention you're having a brain scan and you get people's attention. I'm not sure if it's out of concern or interest if they'll find anything in this skull. Well, the answer is they have located my brain and it's where it's supposed to be. Second, there is nothing in the scan that would explain my dizziness, vertigo, or loss of hearing. Third, and perhaps most surprisingly, my brain is "normal." How many of you readers have scientific proof your brain is normal? Yeh, I thought so---not many!

I naturally have my own theories as to those ailments: The dizziness and vertigo are due to my drugs, primarily the antifungal drug, which I've had trouble with in the past. The loss of hearing is likely due to the extensive chemo I've had. My doctor even asked what I thought was causing the dizziness and vertigo and of course I told him. I don't know whether he's adopted that diagnosis. As Susan said a few years ago after an exam where I charted my future treatment and my doctor agreed, "the inmates are running the asylum."

But the hearing is improving. The loss has moved from profound on the left and severe on the right to between moderate and severe in both ears. A bit more improvement and I'll probably be able to get along without hearing aids. They were quite surprised by the significant improvement in the left ear, particularly.

White count continues to languish. I now need a neupogyn shot every Monday as I am neutropenic every week when I have my blood checked. Neutropenia is the condition of abnormally low neutrofils, which are the circulating white blood cells that serve as the primary defense against infections by destroying bacteria in the blood. Because mine are so low I have to limit my exposure to crowds, children, pets and other potential sources of bacteria/virus, fungus (like gardening, for example). W.C. Fields had much to say on this subject: "anyone who hates children and animals can't be all bad," and "children should neither be seen nor heard from-----ever again." But I digress. Staying out of the sun, out of the pool, out of the garden, away from crowds, not drinking wine, my god, I might as well be a monk!

But despite these issues and a few more (like these awful neuropathies) I continue to feel like we've turned a corner. My anti rejection meds have been further reduced and I'm back on revlimid, although just every other day since that will cause further reduction of my white count.

Best wishes to all.

Monday, July 26, 2010

If I Only Had a Brain

I received an email today titled: "you blog". Not sure if that was a typo or an order. So, to stay on the good saide of J. Sadwith, here goes: First word on the medical front.

Cancer Numbers: M protein 1.5; Iggs 2000. THese are very good numbers for me. M protein varied between 1.7 and 1.9 at MDA. IGGs were aroun 1900. The dropping of the M protein is very encouraging.

My other numbers have been good, EXCEPT for the white count. I don't seem to be able to hold white cells--particularly the neutrofils, which are the really good white cells that fight infection. I am neutropenic (meaning I am prone to picking up bugs/infections). This is due in part to some of the meds I'm on, to the revlimid, and just part of the recovery from a transplant. I'm sure it's also due in part to the fried bone marrow I came home with from Little Rock. You may recall that all of my blood counts were in the toilet and they never fully recovered before my transplant this spring (white count in particular). I got 2 growth shots last week (neupogyn) but, although the white count jumped, it's back down today (2.2). So the plan is to get a weekly shot of neupogyn and to reduce the revlimid to every other day. I'm only on 5 mg of revlimid, which is quite a small dose.

I'm also having dizziness; sometimes fairly significant. Of course I have this hearing/ear problem which could contribute to the vertigo. And I am on a lot of meds which could also be a factor. Anyway, this has earned me a brain scan. Hence the title of this post. Rifkin wants to rule out an infection, which I think is highly unlikely, and also to get a picture of the sinuses and ear canals--which I can understand. I see the ENT (ear, nose throat specialist) tomorrow to retest my hearing and to discuss hearing aids.

But putting aside those issues, the fatigue and the neuropathies in my feet, I'm feeling pretty good. If I could elminate the clinic visits 2 to 3 times a week, and my daily 2 hour naps I might actually be able to put in a full day of doing nothing. Just kidding. I'm mostly feeling that I'm really tired of this 5 year ordeal. I'm feeling worn out. I tried to persuade Rifkin to let me go swimming (since I love to swim), even lining up the pool at a friend of mine's law firm (thanks Jeff, it usually pays to know people in high places). But no go. No swimming anywhere. My bike riding is also limited because I cannot be exposed to sun, even for the shortest time. I have to put sunblock on every morning, even when I'm not planning on being out for long, just in case. (Sun exposure/burn can provoke graft host disease).

Anyway, I just want my life back. Although I have weathered some rough times these past years I have managed not to have much depression. But now, it seems to be creeping in--perhaps, because I'm not feeling like I have to hold it all together in the midst of a crisis--which is how the last 5 years have felt (this is the analysis of another friend, but it makes sense to me). I've never allowed myself to go to this place. I was talking with Rifkin's nurse practitioner today, whom we really love, and she reminded me this is a chronic disease and that's how it's going to be. As she said, "you're going to have a new normal." To which I replied, "that is NOT normal". (incidentally she is moving to Houston to work at MDA. we'll miss her, but will still be able to see her when we're down there). So much for my bitching. I'm sure I'll get over it. If I only could go swimming.

Now on to the social stuff. I made two promises when I left Houston--that I would go back to Dickinson, ND to see my mother and to attend my 40th high school reunion. And to go to NYC to watch Catherine finish the triathalon. I can now confess that I had a good amount of concern about these trips--going through airports, traveling on planes, and being tired. But they were uneventful from the standpoint of being exposed to bugs. The trip to ND was good as it preempted any traveling by my mother, which she finds more taxing as she gets older. Dickinson is a small town and things are a bit slow there, which was fine with me and gave me time to nap every afternoon. A high school classmate and I made a vow at our 30 year reunion that we would see each other at our 40th. At the time it was an easy bet for me and a push for him, as he was wrestling with colorectal cancer. He's had many tough times over the past 10 years, and you know my story. But we made it. As I walked into the opening reception there he was, standing at the door waiting for me. Big hugs, high fives and "we did it," and we went on to celebrate. Don't worry--no alcohol for this guy. My liver is working overtime just getting rid of my medications.

And then there was the triathalon. She did it! Susan and I were at the finish line in Central Park as Catherine ran across. 4,000 swimmers/bikers/runners. She did the entire race without stopping, swimming 1 mile in the Hudson, biking 25 miles and running 6 miles. She looks great. We visited her office at Yahoo! and met many of her friends who were running the triathalon. What a young enthusiastic group. This was a fund raiser for the Leukemia and Lymphoma Society. Yahoo! raised $200,000! Because of their great fundraising the LLS is naming a grant for Yahoo! The firm got to decide which blood cancer the money could go towards and they chose myeloma because of Catherine's moving story of what we've been dealing with these past years. Susan and I got to tell them how much we appreciated their compassion and how much it will mean to research and patient services for people with myeloma. We also got to see Susan's cousin Arlene, her husband Jim, their kids, and their grandkids. It was great but I was exhausted. I came back to Denver after 4 days. Susan stayed an extra week. We had a great time with Catherine and I can't wait to get back there when I have more energy.

Despite my grouching I feel very good about where things stand after this transplant.. We still have some treatment left (the vaccine trial). And as my anti rejection drugs are reduced Mike's cells will hopefully begin a frontal assault on the remaining myeloma. It feels like we may have turned a corner. Maybe that's why I'm feeling low---I want to get back into life but I'm not ready to accept my "new normal." But as Susan always says, "at least you're alive."

So that's the news from last month. I'm glad to be home, in Denver where the weather is mild and I can relax. How's that John? Best to all.

Sunday, June 27, 2010

Say What??

Still reeling from our four month sojourn to Houston, but so very glad to be home. Susan has unpacked everything but my stuff and my items remain strewn about the bedroom. I still have trouble completing projects. I will be seeing Rifkin and having lab work done weekly. So far everything remains stable. I'm ready to have my medications reduced as I feel weighted down from the heavy anti biotics, anti fungals, anti virals, anti rejections, and all the drugs I take to offset the side effects of those drugs.

The latest glitch arises out of my ear drum that ruptured just before we left Houston. Apparently the head cold I've had for the last 6 weeks put too much pressure on the sinuses and blew a hole in my left ear drum. The pain passed but the blood draining from the ear alerted us to a problem bigger than an ear ache. Although I had it checked at MD Anderson, I didn't know the ear drum had burst until we got to Denver, but I'm sure glad I decided not to fly. Anyway, the ear drum is healing, but the hearing loss is significant (or as the ENT doc said, "profound"). My right ear also has "severe" hearing loss. The culprit is likely some of the high dose chemo drugs I've taken, most likely cysplatin. The anti viral, Vfend, also wreaks havoc with my ears and I specifically asked not to be put on it--request denied. I guess one shouldn't be surprised that all these poisons I've injested over the past 5 years would extract a toll on my body. Until I get fitted for my hearing aids, I feel like a character from my childhood, "blowin Joe Ziegler." Yes, "blowin Joe" worked at the local hardware store and walked around constantly blowing from his mouth, to clear his ears. As little kids we thought he was an hysterical character. Now I am him. What goes around comes around.

Going back to Dickinson to see my mother this coming weekend and to attend my 40 year high school reunion. Always nice to see my mom, and I'm excited about seeing many of my friends who visited Denver in 2006 for the famous "Fuzz Fest", as well as a whole host of others who have kept in touch. Hoping my ears can handle the flight and my fatigue doesn't keep me from too many social events. As my brother Tom always counsels me, "take it slow." Susan also deserves a break from me. Talk about testing a relationship these past 5 years!

So, we are gradually reentering life. It's a difficult process, having been out of town for intense treatment for 8 out of the last 18 months. But this time it feels like we are entering a good phase and for that we are very grateful. As a result these posts may become less frequent. I, for one, am tired of the constant (often daily) monitoring of my health. I can't imagine your feelings, other than probably relief, "enough already!"

Love to all,

Sunday, June 20, 2010


Finally. We arrived in Denver last night after 2 long days of driving, primarily by Susan. Friday we concluded that my ears were unlikely to clear for awhile and I decided to bite the bullet and suffer the ride and off we went. Many stories, such as driving 40 miles through west Texas in 100 degree heat, hoping to come upon a town with a gas station. Talk about cutting it close. But we're home, a bit stunned from the long absence but grateful for a relatively trouble free transplant (if there can be such a thing) and appreciative of the wonderful Colorado weather. It's a cool 70 degrees today, slight breeze and no noticeable humidity. More later but for now, we're back.

Wednesday, June 16, 2010

Temporarily Grounded

Last week my doc said I could likely go home this week and in fact said to go ahead and book a flight on Wednesday (yes, today). I was cautiously optimisitic but not so much so that I posted it. In one week's time I've come down with more of the crud. The visit yesterday was supposed to be the sendoff, but instead it was an examination of all those congested orifices. A little blood oozing from the ear had Susan and me concerned, but it seems its just a broken bloood blister. In my ear? So some heavy duty antibiotics, and antibiotic eye drops for the infection there and the belief is that I'll be ready to go by Saturday. My left ear is completely plugged and I can't hear a thing. I'm not getting on an airplane until that clears as I suspect the pressure changes would put me on the floor in excruciating pain. Everything else seems a go. My blood work remains stable. I had my central line catheter removed from my chest. For the first time in 3 1/2 months I will be able to stand facing the shower. But oh, how clean my back is!!!

I start revlimid tomorrow and they will be enrolling me in the vaccine trial sometime next month. Much to my surprise I learned last week that Dr. Larry Kwak, who is the chairman of the Department of Lymphoma and Myeloma at M.D. Anderson will be overseeing this trial. Dr. Kwak was recently featured in Time Magazine's list of the 100 most influential people in the world due to his career devoted to research on cancer vaccines, including a very successful trial on a vaccine for non Hodgkin's Lymphoma.

The protocol for the trial I will be involved in was written by Dr. Giralt in 2004 and only finally approved this year. This clinical trial is modeled after Dr. Kwak's. As I've said previouly, I believe I will be the first myeloma patient to receive this vaccine. Cutting Edge Science!

So, here's to clearing the ears and descending upon Denver.
We continue to be very grateful for all those who have sustained us over these many month away from home. Most particularly Susan's brother Gary who opened his home to us and let us take over. He made a challenging situation seem so easy and natural. As Susan said the other day, "well at least we know we can all live together." What's she planning? A family commune?


Saturday, June 12, 2010

Final Exams

At some point they will discharge me. Of that I'm sure. In preparation they are putting me through the steps I went through just prior to my admission to the hospital for the transplant. Blood work, blood work and more blood work. An opthamologists exam where no fewer than 4 people peered into my eyes. I can only wonder what deep dark secrets they saw. The exam was intended to look for a couple of problems: changes in vision and graft vs. host disease (gvhd). Neither was present. Similarly my pulmonary function was normal and there is no evidence of gvhd in the lungs. This surprised me given that the chemo regime I received in Little Rock (Super Beam plus) is very hard on the lungs as is all chemo. I figured this 3rd transplant would do my lungs in. Not so. Everyone is quite pleased that I haven't had gvhd as it can be quite nasty. Essentially its Mike's cells attacking any or all of my cells or organs. His cells would see my cells or organs as foreign and go after them. I'm not out of the woods yet as it can hit anytime in about 3 years from transplant. But most often it occurs in the first 100 days, which is why they want to keep me here for that 100 day period.

And then there are the 17 pounds I've lost. Nothing compared to the 50 I lost in Arkansas, but more than I expected. Thankfully Dr. Rifkin beefed me up with steroids before this transplant so I had the weight to lose.

Susan and I had to attend a discharge class to teach us what to do and not to do once I get home. Although we've been through this twice before we have to exercise more caution because this was an allo transplant and I am on immunosuppresants. Much as I want to jump back into the full flow of life I guess I have to proceed slowly.

We see the doctor on Tuesday and should have a better sense of when I can return to Denver.

Love to all,


Sunday, June 06, 2010

And On the Third Day He Collapsed

Yes, it seems that reservoir has about a 2 day supply of energy, at best. The game last night was fantastic. A bird's eye view of all the Cubs, even Lou Pinella's scowling face. But the back to back days of partial activity left me exhausted today and my neuropathies throbbing. A day of rest should take care of those issues. It's apparently going to be a long road back. Today this 57 year old is feeling his age, hundreds of doses of chemo, and three transplants. Tomorrow's another day. Onward and upward.

Saturday, June 05, 2010

Reality Check

With all that new found energy I ventured out yesterday. We headed to the Galleria, Houston's upscale shopping center (also known as a mall). I brought Susan along to help craft my new style. You see, I haven't bought any new clothes in about 5 years, since all this nonsense started. Something to do with the fact that my weight has fluctuated 65 pounds, depending upon my intake of steroids and a variety of other factors (like a month in the hospital or other weight losing efforts). Although I must admit that Susan and Julia did buy me a couple of "hospital shirts" at Walmart in Little Rock. Anyway, off we went to find bargains in keeping with the new Dan. That would be the guy with the shiney dome, a struggling goatee, a shorter stature, and numb feet. Well, we've started the transformation and it doesn't include low riding jeans with plaid boxers showing through. It also doesn't include new shoes, as the numb feet make trying on footwear an unpleasant experience. You'll just have to wait to see. The point of this is that after 3.5 hours of shopping my energy disappeared faster than a perfect game in the hands of umpire Jim Joyce. I could hardly make it to the exit to get in the car and come home. Whoa!

But never one to be deterred, today is a new day to test that energy level. Only today (or tonight) Gary and I are headed to an Astros/Cubs baseball game. Prime seating thanks to Gary's connections will find us in the row immediately behind the Cubs dugout. This is all being done with doctor's permission. In fact, when I asked the doctor if I could go to the game, one of the nurses in the room started laughing and said she had been in my hospital room 2 months ago when I was continually pleading for permission to go to the Astros/Rockies game about 3 weeks ago. Permission was denied at that time. In her words, "you never give up." Now I don't know what difference 3 weeks can make but giving me permission only encourages me to continue in my pestering to go home early. Of course, the fact that I now have a different doctor wouldn't be a factor, would it? My attendance won't be without ridicule. Gary has already said we have to leave early to allow time for Chester to walk from the car to the ballpark. (for those who don't understand the reference to Chester, ask someone older than you who used to watch Gunsmoke).

Anyway, I feel that I have more energy but the reserve isn't very deep. Rest assured I'll keep at it.
Go Cubbies,

Thursday, June 03, 2010

The Awakening

I've been amazed after each transplant at how tired I am. As my earlier posts noted this year I was sleeping 18 hours a day when first discharged from the hospital. It seems that the fatigue is cumulative, i.e., each transplant seems to bring along 30% or more of the fatigue from the prior transplant. So I operate in this fog for weeks/months and don't even realize it. Then boom, I wake up. This week I felt a bit of the awakening. On Tuesday I woke up at 7 a.m. Unheard of for me. And more surprising, I didn't need a nap until late afternoon. Although I slipped one day and slept the better part of the day, generally I've had more energy this week, which is very encouraging.

I used this extra energy to continue to work my "team" for an early release. So far no success, but the nurse practitioner in charge of my care showed some signs of bending today. I'll keep on the pressure.

That being said, I am very grateful for the care I have received. They are very careful here in terms of avoiding unnecessary exposure to infectious environments, adjusting meds, pushing me in physical therapy, etc.

I'll start a maintenance dose of revlimid (5 mg) in the next few days for which I'm very happy. Although Mike's cells have fully engrafted I still have myeloma protein in my blood. I don't fully understand how I can continue to have myeloma when I have someone else's stem cells. But the revlimid should help reduce the M protein and guard against progression of the myeloma. A new clinical trial is showing the effectiveness of revlimid maintenance therapy following transplant. I don't qualify for this trial (I think because I was on revlimid prior to transplant), but that only means I don't get the drug without cost. My insurance will pick up the bulk of the $3800 monthly cost (my copay is around $60 I believe).

I think after this is all over I'm going to start a pharmaceutical company. In addition to the $3800 cost of the revlimid, I have an antibiotic to help prevent pneumonia that costs $3000 and an antifungal that is of similar cost. Those are monthly costs. Fortunately I only have to pay the copay. But that's only 3 drugs and I take about 12 pills a day. Monthly prescription costs probably run around $15,000 a month. Any venture capitalists out there interested in investing in Patterson Pharmaceuticals?

My blood counts and blood chemistry continue to be solid. I need less and less fluids and may soon be discharged from my twice weekly clinic visits, but still confined to Houston. Each milestone is another step towards Denver. Soon enough.
Until then, thank you again to everyone for your love and support.

Friday, May 28, 2010

100% Mike

About 30 days ago they tested my blood to see what percent were Mike's cells and what percent were mine. I learned this week that Mike's cells have taken over. Of the cells tested 100% are Mike's. They have run the test again this week and we'll know the results in a few days, but don't expect much of a change, if any. I have no idea how they know one person's blood cell from another's, but they do. This is the goal--to have complete engraftment of Mike's cells. So it looks like we've accomplished that. For the sake of my own reputation I would have preferred to see my cells hold out a little longer instead of just rolling over for the Big Fella, but so be it. This transmogrification also explains some recent quirks in my behavior, to wit, being much more obnoxious, constantly straightening up the house, eating only a vegan diet, a feeling of superiority over other human beings, and an insatiable craving for a drink. No coincidence that these are traits of the Big Fella.

Plans are underway for my return to Denver, although it's still 3 to 4 weeks away. Susan and I have an appointment for a discharge class where we're going to learn everything necessary to keep me healthy once I leave the care of MDA. Having gone through 2 transplants, I suspect we know most of it, but they won't let me leave until we attend the class. I'm also wrapping up my physical therapy, continuing to stun them with my peak performances. And I have to have a complete pulminary workup but that has been delayed due to my cough and para influenza. We had hoped to get away for the long weekend, by going to San Antonio or Austin or to visit Mike, but they scuttled any travel plans---you must stay in the Houston area. Hmph.

That's about it. Not much new. Have a pleasant and fun filled Memorial Day weekend.

Wednesday, May 19, 2010

Hotter Than H ouston

I can't believe I haven't posted for almost 2 weeks. How time flies when you're doing nothing. Then again....So here's the latest. First the weather: Houston is hot and humid (90 degrees, 94% humidity) and it's only going to get worse. The heat sucks the energy right out of me so I've just about taken to staying inside. I'll get my walks in by going to a Super Target or Costco or someplace like that---with air conditioning. I also go to physical therapy twice a week. Those "workouts" are an embarassment to anyone who considered himself an athlete at anytime during his life----like me. But they are about all I can handle right now. According to their data I'm doing very well. Of course you must remember that their data is compiled from people with wheel chairs, missing limbs, paralysis, and octagenarians. But I'm at the top of my class!

I've come down with the crud once again. Seems to be at least a twice a year occurence. The official diagnosis is para influenza, described as a cousin to the flu. I don't have a fever or other symptoms. The doc doesn't seem concerned and says we'll just have to let it run its course. My M protein (a key indicator of degree of myeloma) remains at 1.75; same as where it was in early March. Blood counts are generally good, although I received a transfusion yesterday as my hemoglobin is down a bit. That was my first transfusion since I was discharged from the hospital, which is great. By comparison, I believe I had about 20 transfusions at this date while in Little Rock and then another 5 or 6 in Denver. They will be reducing my anti rejection meds soon, as well as starting me on revlimid I believe.

This weekend I won't have to take any additional fluids. They tried this a couple of weekends ago but my creatinine spiked up (a measure of kidney function), so they put me back on daily fluids. Creatinine has started to go down so we'll try this again.

Susan returned from a long weekend to NYC. It was her first visit to see Catherine in the Big Apple. Of course they had a great time, walking through Times Square, around Central Park and throughout the city. We were both struck by the cycle of life, as Catherine is having the time of her life living in NYC, as Susan was when I first met her. Susan derives great joy seeing her daughter living that life. It was a busy weekend for Susan as she also worked in visits with her cousin Arlene, daughter Stacey and Sigun/Joe and her good friend Hildi. Julia drew the short straw and had to come down to Houston to "cover" during my caregiver's absence. Julia, Gary and I made the best of it by sampling some of Houston's restaurants and discovering the best ever frozen yogurt shop--Red Mango.

That's all for now.

Much love to all,


Saturday, May 08, 2010

Getting Rid of the Roach

I feel compelled to write another post just to get that creepy roach off the screen. Everything remains stable, so much so that they cancelled my clinic visit on Thursday. I'm still technically on a 2 day a week schedule to be at the clinic. I can't adequately express the relief in not having to go to the clinic every day. Those times and the hospitalizations make me feel as if my life is nothing more than getting treatment, 24/7. Now that my visits are less frequent I feel like I'm gradually returning to life. We've been out to lunch and dinner. I even went shopping with Suz yesterday. Of course I needed a nap after that outing!

We continue to be guarded about my recovery, having been burned by bad news more than once. That being said, this feels different. I am so relieved my counts are stable and that I haven't gotten really sick. I am very happy with MD Anderson and the way they run their clinic. I am also very pleased that my doctors have a longer term plan to keep attacking this disease. They've discussed with me two new clinical trials as possibilities to further reduce the myeloma. I feel better than I have in a year and a half (must be due to those weeks when I was sleeping 16 hours a day). I continue to lobby for early release but my doctor isn't giving in (not yet anyway). We're still looking at a return to Denver sometime in late June.

Happy Mother's Day to all you moms who are reading this, especially my mother, who prays for me daily and repeatedly assures me I'll be OK. Mothers know about those things so I'm sure she's right.

Tuesday, May 04, 2010

Our First Kill

Houston's reputation for heat and humidity is well known. What is less well known is that there is a foreshadowing of this season. Just before the heat and humidity arrive, their appearance is announced by ROACHES. Egad! We have nothing like this in Colorado. Not only do they come in Super Size, but they Fly. YIKES. This morning Susan woke me up and asked that I take care of a roach in the other room. Yes, my first kill. Smashed beneath the heal of my shoe and later flushed down the toilet. But before it disappeared I did what Julia has taught me to do: document the roach. See above.
On a more positive note, the doctor told me today that my visits to the clinic will now be reduced to twice a week and there will no longer be fluids infused at home. Freedom is being dispensed in small increments, but nonetheless it's coming. My blood counts continue to be stable. I need an occasional neupogyn shot, but other than that I am producing cells almost like a normal person. And I feel pretty good these days. My sleeping is down to a mere 12 hours a day and the GI issues are slowly resolving. There are plans for further treatment, such as another infusion of Mike's cells, but for now, things look good. We still have a few hurdles to get over but everyone seems pleased with the progress thus far.
As always, thank you for keeping us going.

Wednesday, April 28, 2010

Optimism vs. Skepticism

We met my new doctor yesterday. Yes, new doctor. Dr. G. has gone east to NYC to head up the transplant program at Sloan Kettering. His departure is lightheartedly called a betrayal by the staff at MDA because Sloan and MDA are always competing for the honor of being the nation's top cancer center. Dr. G. called me in December, before we had committed to MDA to tell me of his decision and to offer alternatives. As you know, we decided to stick with MDA, first because Dr. G would still be here for my transplant and a month afterwards and second because of MDA's reputation for running such a smooth and clean operation. A reputation which has proven to be true based upon our experience. Our new Dr., Dr. Q, from India I believe, is quite warm and knowledgeable. Dr. G has also indicated he will continue consulting on my case, even though he is now in NYC.

The bone marrow results are encouraging. My doctors are very encouraged and Susan and I are a bit more skeptical. My plasma cells were at 29% just before the transplant (down from 87% post Arkansas, due to the 3 months on revlimid). The lastest bone marrow shows them at less than 5% (actually 1 %). So why aren't we jumping up and down in celebration? First, remember that debacle in Arkansas when the plasma cells went from 90% to 5% in one week; only to return to 90% the next week. Although the bone marrow biopsy is often described as one of the most definitive tests, it has its shortcomings. One of those is that myeloma is patchy. It can be concentrated in one section of the marrow, and hardly present in another. So, my view is that they hit a section that has fewer plasma cells, which is not representative of my entire bone marrow. Why do I think this? Because my IGGs haven't moved downward, and because my M protein has also not moved--it remains at 1.7. We are assured that the effects of the chemo will continue for another 30 to 60 days and that can have a positive effect in decreasing the myeloma. The doctors, (Dr. G and Dr. Q) both see the entirety of my blood work as very encouraging. When I was questioning Dr. Q, he immediately asked how my blood counts were in Arkansas, when my bone marrow results were so inconsistent. When I told him that my blood counts were in the toilet, i.e., I continually needed neupogyn, red blood transfusions, and platelets, he noted that I have not needed any of that here, (other than a couple of neupogyn shots) meaning that my marrow is working much better. Regardless, things have definitely stabilized. And they still plan to start me on a regime of revlimid and another infusion of Mike's cells, both of which will help further decrease if not eliminate the myeloma.

An insight into the road we have walked: in mid June when my counts were not recovering, I was still losing weight, I was struggling with a body rash and thrush, my IGGs were rising, and Rifkin was telling me that he could not treat me yet because my counts were too low, I told him that I thought I had really screwed up in going to Arkansas and that I had gotten myself in such a bind that I would never recover. Rather than reassure me, he only said he understood why I felt that way. He essentially acknowledged I was in trouble, and I think that is one of the reasons he ultimately referred me to MDA. In light of that history, stable disease is great and decreasing myeloma is fantastic. We'll take this.

I still wrestle with fatigue, although less so, as well as nausea and diarrhea. Of what fun! But all in all I'm doing well, or in the eyes of my MDA team, I'm doing very well. They are better judges since they see all those who have much more trouble following transplant.

Thank you again for all the support, cards, letters, emails, thoughts, prayers, etc. We continue to be extremely grateful for all the support from family and friends. We love you.

Tuesday, April 20, 2010

Satisfied With Stability?

The news yesterday should be measured against expectations. Depending on what we/you hoped for or expected, it could be good or not so good, but definitely not bad. Thirty days after transplant, the IGGs haven't moved. They're in the low 1900s, and were at 1875 in early March when this latest treatment started. (normal being between 600 and 1600) I had a bone marrow biopsy today and we'll have a bit more information next week. So what does this mean? Any reduction in IGGs would be caused, at this juncture, primarily by the high dose chemo I received prior to transplant. That didn't happen. The main chemo drug was melphalan. That was the main drug in my first transplant and also a key drug in my second transplant. We know how well that worked in those transplants. NOT. I repeatedly told Dr. B in Arkansas that melphalan did not work with me and my concerns were dismissed because, I was told, melphalan would given along with 8 other drugs. Those 8 other drugs didn't do anything to my disease either, other than make it even angrier than it already was. And, of course, the combo package made me extremely sick.

I told Dr. G. that melphalan does not work with my disease. At least he acknowledged my concern but told me melphalan is in every myeloma protocol they use and that the allo transplant would also have my brother's cells to work with. How is it that I know what won't work with me but the docs don't, or refuse to believe I could know such stuff? Yes, I'm frustrated. That being said, it's probably fair to say there isn't a chemo drug that could be given in high dose that would work with me, since I received every possible drug in Arkansas and nothing worked. As Dr. Rifkin noted upon my return from Arkansas, we need to use a little more finesse with my treatment.

Dr. G's spin on my IGGs is that my disease has been stable for more than 2 months and that is nothing to dismiss. In that he is correct, as my experience in Arkansas was that after about 2 to 4 weeks of each of the 3 high dose chemo treatments I received the myeloma counts started rising again. Dr. B's flame throwing super beam plus couldn't even stabilize my disease! Also, we won't know the full effect of the pre transplant chemo until 90 days post transplant, so downward movement could still occur in the next couple of months. Stable disease is definitely better than raging disease.

All is not lost, however. Because I have Mike's cells, they stand at the ready to attack this myeloma. They haven't been highly active in that fight because the anti rejection drugs mask my cells. So the plan is to start weaning me off the anti rejection drugs in about 3 weeks, being careful not to let graph host disease set in. Once off the anti rejection drugs, I'll get another infusion of Mike's cells and start on a low dose of revlimid. I asked Dr. G if remission is still possible. After a long pause he said, "I'm going to say yes. Definitely." I'm not sure what to make of that. Not to put the pressure on, buy I'm still counting on you, Mike.

Susan's expectations were higher than mine. She looked at me and said, "I was hoping for a miracle." My response: "Don't ignore the miracle standing right here in front of you. It's been five years and I'm still here." The anxiety of all this has taken its toll as she came down today with a nasty bladder infection. When it rains it pours.

On a more positive note, my counts continue to be very good and stable. I'm also getting some energy back and haven't slept 18 hrs a day for at least the last 4 days. I'm probably down to 12 hrs. a day. We go into the clinic a little less frequently, which is nice, especially since we now get the weekends off.

Saturday, April 17, 2010

Continuing the Boring Life

Visits to the clinic have now been cut to Mondays, Wednesdays and Fridays. My counts remain stable and I haven't needed any shots or transfusions. I've even had a couple of "good" days this week, meaning I didn't sleep the entire day. Yesterday I'm sure I slept 18 hours or more. But today I've felt more energized, took two walks and only napped for 2 hours. This is progress.

We saw the doc on Thursday and he continues to be pleased with progress so far. He outlined the plan for the next 30 to 40 days and it involves primarily watching for graph host disease or any other complications. At some point they'll start reducing the anti rejection meds and see how well Mike and my cells get along. In the meantime, my activities remain limited, I'm primarily housebound, and am thankful for the days we don't have to truck down to the clinic. Of course, Susan has to play nurse on those days, hooking up my IVs at home, which always makes her nervous since a nurse in Little Rock told her if she didn't do a particular thing it could kill me. Talk about increasing the pressure. That's worse than taking the nursing boards.

We received a nice card from a friend in Denver this week addressed to Susan and Dan Patterson c/o Uncle Gary. How funny! Soon Uncle Gary will get his own postal code.

Best to everyone.

Monday, April 12, 2010

A Week at Home

The past week has been "relatively" uneventful. I still have my 5 hour daily visit to the clinic to get blood drawn and fluids. So far, I've only needed one neupogyn shot, which took my white count from 2.5 to 26.0 in one day. Whoa. slow down Mike. But I feel great about not needing transfusions of either red cells or platelets. The stability of my blood counts makes Dr. Giralt even more confident that Mike's cells have engrafted, as he doesn't think my cells would perform this well--I agree. In fact, he is quite pleased with my progress so far. That being said, it hasn't been a cake walk. It seems I'm plagued with either vomiting or something similar. Par for the course. And I don't think I've ever slept so much in my life.

And Susan is cleaning up the place with a vengence. Last night she was out in her brother's garage, of all places, moving things, dragging things out. Her brother seems to be the beneficiary of her channeling of all her nervous energy. Of course, I think it's the least "we" can do for intruding on his living space for 4 months. But he and Suze are having a good time, as I sleep my life away. They also are eating some fine food, as Houston has many great restaurants. Unfortunately, my appetite is also asleep.

Houston is quite nice this time of year, at least from the inside of the house or clinic looking out. My doc says stay in the house for another couple of weeks to avoid the pollen. It does feel like house arrest.

So far, so good. Still anxious to get back home, but doing well under the circumstances.
Thanks to all the MM survivors who have jumped on the blog to send their good wishes. Julia called me the other night, "dad, who is Steve Ritter? How do you know him?" Well, I know him only by his blog. "Well, he certainly is a nice man," she responded. Yes, all of you who continue to support us are very nice, indeed. Thank you.

Wednesday, April 07, 2010


I was discharged on Monday afternoon following an uneventful Easter weekend. For the next 10 days we have daily clinic visits, which will take from 4 to 6 hours a day as they test my blood, infuse fluids and any other nutrients my blood may be missing such as potassium, platelets, red cells, etc. I am still so exhausted that I see this as an opportunity to sleep, as I did yesterday. I slept through most of the 4 hours, then came home and slept another 2 hours. I guess the work going on in my bone marrow is sapping my energy. At least there's something happening there. Thus far everything in the blood seems to be in good shape (way to go Mike!).

We are now on the alert for graph host disease, which can show itself in variety of ways, such as skin rashes, fevers, increased GI problems, etc. None of it sounds good so we are maintaining high vigil to catch anything early.

Susan and Gary spent the 3 1/2 weeks that I was in the hospital cleaning his house and yard so I would have a comfortable clean environment. It all looks so nice and spit polished. Unfortunately it appears I won't be able to enjoy sitting in the yard as my first attempt at that ended after 30 minutes when my hands got all red and itchy and I had to retreat inside. That was probably my sensitive skin's response to the pollen and heat. I guess I've moved from room arrest to house arrest; a gradual expansion of my area of influence.

My appetite is marginal, which is why I was not shy about bulking up in the months leading up to this. I've also lost all my hair once again. Except this time I went to the barber and got my dome polished. The top of my head literally shines now. Ah, I'm sure it will be a challenge to be such a hottie. NOT.

So the plan is to keep everything as boring as possible and to get early release back to Denver. It's going to get hot and humid here very soon and after 35 years in Colorado I don't tolerate heat and humidity very well.

Happy Spring to all.

Friday, April 02, 2010

Discharge Aborted

Well, it seems Ireally messed this one up. Yesterday was not a good day. Blistering headache with vomiting. Ultimately they took me off the anti rejection meds, gave me some IV dilauded and things calmed down. But not before I had my whole team in a tizzy. I felt much better this morning, after getting close to a full night's sleep. They only woke me once during the night. But the doctor was not very keen about discharging me because if I got sick again I would have to return to the hospital, get admitted through the ER (sit for hours and wait for a bed with all the sick people around me, coughing and hacking) and there would be no guarantee they would have a bed, or that I would get a bed on the transplant floor. The doc said, if she were me, she would stay the weekend and get discharged on Monday. So it looks like an Easter celebration in my hospital room. I declined the invitation to decorate my IV pole and participate in the Easter parade. But maybe I'll take a video to share.

I'm not too upset with this delay. I've written about our experience in Arkansas when we had to get admitted through the ER on a weekend and it truly was a nightmare. They are short on staff and cancer patients don't get any special treatment through the ER (we are such a spoiled bunch!), even though we are immunosuppressed.

With the exception of yesterday I've continued to do well. My white count is up to 8.1. Hemoglobin is 9.2 and platelets are 80. It has been along time since my platelets were at that level. This is all good because the elevated white count will help fend off infections and will help draw up the hemoglobin and platelets. Way to go Mike. (since these are Mike's cells). I had my first transfusion with Mike's blood type (O+) a few days ago and no complications. Changing to his blood type should not be a problem since O+ is the universal donor anyway.

So, we're looking at a Monday discharge, provided I behave myself. Will keep you posted. And thank you everyone for all you support.

Wednesday, March 31, 2010

Engrafting and More

I was awakened this morning by my male Russian nurse (so imagine this being said with a heavy Russian accent): "I am pleased to tell you, my friend, you are engrafting. Your white count is now 1.5." YES! My night nurse predicted a jump in the white count given the intense bone pain I've been having. My back, sternum, and hips are all throbbing from the production of cells, which is a good thing, but it sure doesn't feel so good. Anyway, Mike is in Houston for a mediation so he spent a few hours here at the hospital checking on me. We had a nice chat.

So, we have passed through the risks associated with the transplant, and the risk of nonengraftment. Two major risks without major complications. I think this bodes well for me getting out of here sooner rather than later. Perhaps in a week.

That's all for now folks. Keep the good thoughts coming our way.

Right after I posted this the doctor came in for the morning rounds. She told me that I should plan on going home (to Gary's) on Friday. Wahoo! I am in shock. That is a week early and Iam so ready to get out of here. What a great day.
Love to all,

Tuesday, March 30, 2010

Look Out, The Big Fella Is Coming Through

The nurse woke me up this morning with, "looks like something is brewing in your bone marrow. Your white count is .3, up from .1" Not a huge step in terms of numbers (normal count is above 3.0, but for me normal/acceptable is above 2.0. But more importantly cells are growing/engrafting in my bone marrow. They are most likely Mike's cells since they obliterated mine with the chemo. It's been 11 days since my transplant so this is on the earlier side of the time line cells are expected to start producing.

Yesterday was my roughest day so far and that might be attributable to the work being done in my bone marrow. I was completely exhausted all day along with the other typical chemo side effects. As my white count goes up I should start feeling better.

It's a strange thought when I ponder what they are doing to me. Killing my cells, harvesting cells from Mike and infusing them into me. Perhaps the word is humbling. Then again amazing would also be an apt description.

Much love to all,

Sunday, March 28, 2010

Whas Up? Not Much.

I've been waiting to "report" something, but fortunately nothing is happening, which is a very good thing. Every day I am asked by at least 4 nurses and 2 doctors whether there is any change in my condition/symptoms, etc. Nothing to report. Susan calls me every morning with a question, "how are you?" My daily response: "I'm fine." (under the circumstances) We're waiting for Mike's cells to wake up, although they aren't really expected to show any activity for at least another 4 to 7 days. I'm not bursting with energy but I do manage to get at least a mile's walk in every day, and usually more. In about a week or so we hope to see some activity in the white cell count and then a few weeks later they'll do a DNA test to see if it's Mike's or my cells that are growing. We want Mike's cells to show up and start to take over. Tom and I were talking about how we could provoke Mike into action. We concluded that he is so competitive that the best way to bait him is to tell his cells they aren't strong enough to do this job. I can already see his face getting red as he reads this. The challenge should work.

Two incidents come to mind. First, when we were in high school Mike set the school record for situps (something in the neighborhood of 1000 to 1500). His butt was so sore he could hardly sit for a week. Second, he got in a fight with the school bully and got punched in the nose and had his nose broken. Mike looked in the mirror, saw his nose off to one side, walked over to the well built bully and said, "you broke it, you fix it. Push it back in place." And by god, he did and then he sat down and cried and cried, with Mike standing there looking at him. For those who don't know him, his self annointed nickname in high school was "muscles Mike." Later he changed it to "big fella". Interesting, tough, and stubborn fella. There are an equal number of stories about brother Tom, but I'll save them for another day. And as for my sister, Kathy, well she chose to pursue a quieter life, or perhaps I just don't know about her secret life.

Susan pushed me into attending an exercise class here, with the promise that she would go with me. So there we are, all sitting in a hallway with our IV poles at our sides. The instructor starts out with a game to get to know each other and I think I've taken a ride in the way back machine and am back in first grade. Halfway through the "tell us 2 truths and a dream" Susan leans over and confesses that she can't take this and has to leave. "Say what" I say. "You made me come to this and now you're leaving?" She sits down. Five minutes later she's up (we're still playing the game) and she tells me she is definitely leaving. My response: "but you'll miss the shuffleboard game." She left. I stayed, but I don't think I'm a better man for it.

Now, back to this 10x10 room. I'm ready to get out. I'm tired of the menu, but thankfully don't have much of an appetite. I'm longing for a good night's sleep without interruptions to draw blood and check my vitals. I'm tired of being tethered to an IV pole (a ball and chain come to mind). Showering with these tubes coming out of my chest into my IV is quite an experience. and as my mother used to say: I'm sick and tired of being sick and tired. But these complaints are minor and I know I can put up with this. Just venting. Susan is an angel. She takes such good care of me and daily I am grateful I have such a good partner who willingly gives up her life to travel to such beautiful vacation retreats as Little Rock and Houston (for the summer).

Thank you everyone for keeping us going. We love you.

Tuesday, March 23, 2010

Happy Birthday ???

Tomorrow presents a number of birthday options. First, the unquestionable: Mike will be 60 years old. WOW. talk about old! Happy Birthday Mike. We're sure glad you've made it this far. Now for the dilemna: Do I share in this birthday? Am I also 60, or at least partially so? I don't feel 60. Or did I have my birthday on March 19th when I received Mike's stem cells? If so, would that be my first birthday? or my 60th? It makes my head spin. I think I'll claim all dates as birthdays and (stealing a phrase from the NCAA) call it March Madness. Whatever the date and whichever the number, I'm glad to have this dilemna. March 23rd is also the 5 year year "anniversay" of my MM diagnosis, and to continue the celebration, March 26th marks the date, 33 years ago, when Susan and I first met on a 2000 mile blind date.

My course continues on the expected path. White count is now 0. In 3 days I'll start neupogyn shots which will I will receive for 7 to 10 days, to help wake up Mike's cells. This next week is predicted to be the low point of this transplant. Each day I'm feeling more tired, etc. But I'm still getting more than a mile of walking. "They got me going in circles....round and round we go."

Thank you everyone for the cards, emails, letters, and good wishes. We are very appreciative of your love and support.
Birthday wishes to all,

Sunday, March 21, 2010

Keeping It Boring

The transplant took place, as expected, on Friday, March 19th. I told Mike that's going to be my new birthday. They pumped me full of all kinds of drugs--anti rejection, anti viral, anti fungal, anti social. No, not anti social. That might come from Mike's cells. Then again, he's a pretty socialable guy, so maybe not. I had some immediate response to the transplant in the form of severe nausea and GI issues, but they subsided within hours. Thus far things are pretty stable. My current complaint revolves around the piercing headaches I seem to be getting from one of the anti rejection meds. They give me darvon but it doesn't seem to be helping much. The offered me dilauded but I'm not interested in that high. I took that to help with the back pain in 2005 and lost about 3 months of memory!

So the days just slip by. The nurses are in my room every hour or so, hanging a new bag of drugs, checking my vitals, etc. Not much time to rest. They are letting me sleep more at night instead of checking my vitals every couple of hours. I'm continuing to walk every day and am now up to 2 miles a day. The route we take around the floor makes Susan dizzy. A metaphor for our life perhaps?

This all feels too familiar. Reflecting back on the past 5 years it feels like we've spent most of our time in medical facilities. Life has turned into a treatment regime to stay alive, as opposed to exploring our world and filling our lives with new experiences. Certainly not what we had in mind for our retirement years. I wonder what it will feel like when I get into remission and life opens up again. Could we really bracket these past five years and move back into our old lives? I'm sure not. Too many lessons learned. I'm sure life will be much richer for this experience. In the meantime, we await the awakening of Mike's cells.

Love to all,


Thursday, March 18, 2010

Day's Rest

No chemo today. I've finished the 5 days of chemo. Yesterday being the most full, with fludorabine, melphalan, dexamethasone, zophran (an anti nausea) and tacrolinus (anti rejection). One day's rest before I get introduced to Mike at the cellular level. Even though I've known him 57 years, one day seems hardly enough time to prepare for such an introduction. I prefer to go slow with these first meetings; you know, spend some time getting to know one another, etc. Instead, Mike's cells will be thrown into my bone marrow and off we'll go, hand in hand so to speak (or is it blood in marrow?).

I've managed with the chemo so far, but am well aware that the side effects may increase in the following weeks, so we're not through this just yet. Then, once Mike's cells start producing I'll probably be discharged and monitored closely on an outpatient basis to watch for graph host disease, i.e., my body's attempt to reject Mike's cells. Fortunately, we've gotten along over these past years and neither one of us is interested in rejection, so I'm confident we'll be fine.

I've pushed my walks through the hallways to 1.6 miles. Today I'm going for 2 miles, just to keep my good shape. Speaking of which, all the fluid they've given me has pushed me up a total of 9 lbs. Yikes! I was up 12 lbs., but they gave me lasix (a pee pill) and I lost 3 lbs. I feel my appetite slowing so maybe that will help. The hospital food is now officially old, but Susan and Gary are bringing me food from surrounding restaurants. My diet prohibits any fresh fruits or uncooked vegetables--to prevent me injesting bacteria. Boring.

But that's what my doctor says: let's keep it boring.
That's all from Houston. It looks to be another nice day in Texas.

Tuesday, March 16, 2010

Celebrate the Irish

I've Irish blood from both sides of my family. The names of my siblings tells you my parents were proud of their Irish heritage: Mike, Tom, Dan and Kathy. Had our father not died early in his life, we likely would have had a brother or sister named Pat. Although we had many other types of ethnic blood, our mother raised us as Irish and St. Patrick's Day was a day of celebration. We even attended St. Patrick's school (and St. Patrick's Day may even have been a school holiday--I can't remember. But if it wasn't it should have been.) Our mother remarried 21 years ago, on St. Patrick's Day, and of course, married an Irishman: Bob Walton.

Here's hopin a few of these Irish sayings bring a smile to your heart on this most sacred day:

If you're lucky enough to be Irish, then you're lucky enough.

Wherever you go and whatever you do,
May the luck of the Irish be there with you.

May you be poor in misfortunes and rich in blessings.
May you know nothing but happiness from this day forward.
May good luck be your friend in whatever you do.
And may trouble be always a stranger to you.

May flowers always line your path and sunshine light your day.
May songbirds serenade every step along the way.
May a rainbow run beside you in a sky that's always blue.
And may happiness fill your heart each day your whole life through.

It's easy to be pleasant when life flows by like a song,
but the man worth while
is the man who will smile
when everything goes dead wrong.
For the test of the heart is trouble
and it always comes with years,
and the smile that is worth the praises of earth
is the smile that shines through the tears.

Love to all,
Danny Boy

Sunday, March 14, 2010

Sunday Night

It's Sunday night. Susan has left for the night and only has the parking garage to deal with before she heads to her brother's house. The parking garage is no small endeavor. It took me 3 days to find the closest garage and then to decipher the "yellow chip" payment system here. This medical center is very impressive. It includes at least 4 hospitals, 2 medical schools, and numerous other medical facilities. A small city in the heart of Houston. I have one of the better rooms; on the 11th floor, with a view of the medical center. I also am able to capture the sunsets from my window. Small perks go a long way when you're looking at a month's stay.

Chemo started on Saturday morning and continues through St. Patrick's day. Will I get green chemo that day? Perhaps not, but the luck of the Irish will surely be with me. I get 4 days of fludorabine; coupled with 2 days of melphalan. Then a day's rest and on March 19th Mike's cells are infused. Mike's 60th birthday is March 24th so we're getting all the high points with this schedule. So far the chemo has gone fairly well, other than the massive amounts of fluids. Let me trace it this way: The chemo hits the kidneys quite hard so to reduce the stress on the kidneys they have me on a constant infusion of saline solution. I'm not moving the fluids fast enough (I gained 7 pounds in one day!); so they give me lasix which unleashes the fluids and keeps me close to home, so to speak. The fluids also "fluidize" my blood--their word, not mine. So my white count and red cells are diluted and thus, very low, resulting in my having 2 transfusions so far. Ah, the wonders of modern medicine.

I've walked a mile each day. Although I'm confined to the 11th floor, 5 times around the floor is a mile. Susan (who walks 5 miles or more each day) makes sure I get my butt out there walking. All visitors are required to wear masks and gloves when coming in a patient's room. The contrast with Arkansas is striking. Whereas in Arkansas all transplants are done on an outpatient basis (requiring daily visits to the clinic), here at M.D. Anderson all transplants are in patient. Different strokes. I am impressed with the focus on hygiene here. It would be interesting to learn whether there are differences in rates of infection based on the different approaches to infection control.

So that's the state of affairs. So far I feel like I'm managing well. I do know that the side effects of the high dose chemo may take a few days or week to set in. But so far so good.

Thank you everyone for your good wishes, thoughts and prayers. They are much appreciated.

Thursday, March 11, 2010

Hospital or Airline?

I was deboarded on Wednesday but have yet to get on a new flight, so to speak. Received a call this evening from admissions: we regret to inform you that your admission has been rescheduled for tomorrow. OK, I'm not complaining. I suspect that had I not demanded that I be put on the transplant floor I would be in the hospital by now, being attended by some nurse who didn't know the difference from myeloma and my aroma. Once again, we dealt with this delay by indulging ourselves in yet another "fine" meal. Susan says we can't afford any more cancellations. I, on the other hand, am not in any hurry. In my experience, fine dining will always trump chemotherapy.


A Welcome Delay

All ready to check in last night, merely awaiting the call from admissions. Instead Dr. Giralt calls. There is one insurance approval that has not come through, they can't reach anyone at the insurance company, and he doesn't want to admit me and then have the insurance company disapprove. So, we get another evening off, which we once again use to go out and enjoy another fine meal. I expect I'll be admitted today, as insurance approval has come through.

I can't resist using this little glitch for a political "teaching" moment. I tend to scream everytime I hear those who are opposed to health care reform proclaim they don't want the government getting between them and their doctors. Who are they kidding? Under the current system there is a big old profit seeking insurance company sitting smack dab in between each of us and our doctors. Most medical procedures deemed necessary by our licensed and regulated doctors must nonetheless be approved by some unlicensed and unregulated insurance adjustor before the patient can receive the treatment. If this system isn't backwards then the sun doesn't rise in the east. I could not list the number of times in the last 5 years that I've had treatments denied or delayed, awaiting approval from some lesser trained and much less knowledgeable person, who isn't licensed to practice medicine but is allowed not only to second guess but to overrule my doctor's recommendations.

Enough. I'll let you know how the accomodations are once we're checked in.

Tuesday, March 09, 2010

M.D. Anderson

And we're off. Susan and I had a fine dinner out tonight. Tomorrow is check-in. Third time's the charm.
Love you all,

Thursday, March 04, 2010

Crossing the T's and Dotting the i's

We've finished the testing, met with Dr. Giralt and are awaiting hospital admission next Wednesday. The tests provided a bit of good news, i.e., nothing has worsened and the bone marrow is in much better shape than when I was here in October. My plasma cells were at 87% in October and the M protein was 3.7. Plasma is now 28% and M Protein 1.6. (Normal plasma cell levels are about 5%; M protein 0.) Dr. G was extremely pleased with my progress over the past 5 months, and commented twice during the half hour that I looked great. He also offered that when he saw me in October he wasn't at all confident the revlimid could put a dent in the myeloma.

He reviewed other options following transplant, including his plan to put me on either revlimid or pomalidomide 90 days after transplant. He strongly prefers pomalidomide but isn't sure it will be available for this application (post transplant) at that time, but if it is, then that is the course they'll follow. We discussed a few other options. This was quite a change from our meeting in October when I felt I had almost run out of options. Not to minimize the risks of this transplant, but they are thinking and planning beyond this transplant; and they actuallyhave some options available. Nice!

So I've got 5 more days before I'm locked up in the hospital for a month. In years past this might have been reason for a weekend of celebration, but not so anymore. But the weather in Houston has been very nice, almost springlike, so we'll probably try to spend some time outside.

That's it for now.
Love to all,

Monday, March 01, 2010

Testing Has Begun

The day began at 7 a.m. by checking in at M.D. Anderson. A few noninvasive tests, some blood work, and three "consults" to review the transplant process. A process we've been through twice, so it seemed unnecessary---particularly the meeting with the social worker. But they have their procedures, so we tolerated all those questions that we've answered many times over the last 5 years.

We dropped Julia off at the airport this afternoon and she reports that she has arrived safely in Denver. She was of great assistance in helping to get Susan and me moved in to her brother's house. My mother always told me that when staying with someone, I should always remember that fish start to smell after 3 days. I told Gary that if fish start to smell after 3 days, they must be decomposing and full of maggots in 4 months. The poor guy. He's lived alone for the past 35 years and now Susan and I move in. Talk about shock! He's most generous and accomodating. I'm the one who's sensitive about this. Susan, on the other hand, merely says, "he's my brother. Of course we'd stay with him."

Mike left me more than 6 million stem cells last week. (they need about 4 or 5 million). He had to spend a week down here, giving himself neupogyn shots and then spending 2 days in the recliner as they harvested his cells. His output was much less than I've seen in many of the autologous transplants (I spit out 22 million prior to my first transplant) but I don't know if that has something to do with other drugs that are administered when they are harvesting stem cells from the patient himself. I guess I need to get on google and see what I can learn.

Tomorrow is a full day of bone surveys, scans, and biopsies. A bit more rigorous than today. Wednesday is the same and then it tails off by the end of the week. Then I will be admitted to the hospital next Wednesday for the chemo and transplant.

Much love to all,

Monday, February 15, 2010

Still on Track

Good visit with Rifkin today. Everything is a go for Houston. He is very pleased with my recovery, and probably a bit surprised, as I was quite compromised when I first arrived back from Little Rock. The bone marrow still doesn't work quite right, but I'll leave that problem to Mike's cells. IGGs are at 1875 (normal being 600 to 1600). M spike is stable at 1.4. White count is a bit low at 2.2 but he is unconcerned about that. One more visit with him next Monday, then we're off to M.D. Anderson.

Sunday, February 14, 2010

The past 2 weeks have presented yet a couple of more challenges. A cough/cold/wheeze lead to an early discontinuation of revlimid. Rifkin cancelled my last week of revlimid to allow my lungs to recover. The CT scan brought some relief, as it showed no pneumonia. But my immune system is ill equipped to deal with cold symptoms, etc. It just takes about twice as long to rid myself of the crud. During this fight with the crud (I get it every February), I got hit with the worst of the steroid withdrawal, including the shakes (DT's?). This has not been fun, but today it feels like I'm come through the worst. I've got one week left of low level steroids (10 mg. every other day). So, enough of my complaints. Everything is a go at M.D. Anderson. My brother has been through a couple of days of testing and they'll harvest his stem cells within a week to 10 days. Susan and Julia will depart in Susan's little Subaru on Feb. 26th and I'll follow by air the next day. Testing starts March 1.

Catherine will start training for the NYC triathalon in about a week. She is doing this to raise money for the Leukemia Society. Check out her web page:

I'll try to provide one more post before we start our sojourn to the south.

Love to all,


Tuesday, February 02, 2010

We Have a Date

I've begun the 2nd week of my last cycle of revlimid. I had a 2 week break due to low white count, which brought concern about whether the IGGs would start an upward trend. Fortunately, the steroids apparently held them in check. IGGs at 2021. M spike went up from 1.4 to 1.5. Rifkin says its time to go to Houston. We are tailing off on the steroids (decreasing the dosage by 10 mg. each week). Brother Mike will be in Houston this week for his first round of tests. Mainly blood work I think. Then back in 2 weeks for a fully week of shots and stem cell harvesting.

My testing begins March 1; admitted to the hospital March 10 and the three drug chemo is administered over the next couple of days. Mike's cells will be transplanted on March 15 and the metamorphosis begins. YIKES!!!! I thought human cloning was illegal. Or maybe this will qualify as identity theft. And the idea of two Mike Patterson's wandering around this earth is likely to cause some people to run for the hills. I told Mike I would appreciate receiving some of his hair cells, as I seem to have lost most of my hair. So there you have it.

Susan and Julia will once again be hitting the road in the days before March 1. I will once again be taking the easy road and catching a flight to Houston, all to meet at Susan's brother, Gary's house. And they complain that I never take them anywhere!

I sit in disbelief at our experience over the last 5 years (On March 23rd it will be 5 years since diagnosis) and have even greater difficulty believing this will be my 3rd stem cell transplant.
While I feel more tired going into this than ever before, I know I have a month to pull myself together, brace for the inevitable, and walk through the fire once again. Susan is in the same place as I am. Not a day has gone by, however, without our being deeply grateful for all the extraordinary people in our lives. We continue to feel your love and support and we know we will endure.
Onward and upward,

Monday, January 25, 2010

Bound for Houston

Last week's white count, even after three neupogyn shots, only rose to 3.7, so resumption of the revlimid was delayed until my lab work today. Blood count today was good. White count holding at 3.8, platelets at 94, hemoglobin 10, and hematocrit 30. Good enough to go through another cycle of revlimid (3 weeks). After that, I'll have 3 weeks to wean off the prednisone. Sometime during that 3 weeks we'll be moving to Houston to get tested and prepared for the transplant from brother Mike.

I'll be in the hospital at M.D. Anderson for a month for the transplant and recovery. They'll give me immunosuppressants so I don't get in too big of a fight with my brother's stem cells, then they start the monitoring to see how I'm handling the change from my immune system to his. (I'll even end up with his blood type, rather than mine). Then I'll be "confined" to Houston for 3 months in case I pick up any bugs. We'll be staying with Susan's brother during that time. If I get sick, even so much as a mild cold, I'll have to go to the hospital immediately, as I understand it. I've committed to go to my 40th high school reunion back in Dickinson, over the 4th of July, so I'm planning on departing Houston in late June.

I had to have one final discussion with Rifkin about other options. In his view there aren't any other options. He and Dr. Giralt see this as the opportune time to do the transplant. More cycles of revlimid are not an option due to the risk of increased toxicity and lack of eligibility for the transplant. But, we have accomplished more than what was expected by either Rifkin or Giralt with the revlimid and prednisone. As Rifkin described it, "you'll be buffed and polished and ready for transplant after this next cycle." So here we go. Just call me Mr. Florsheim.

My brother Tom visited over this past weekend. We had a great time, including working through his list of home repair jobs. The topper was the scrabble game on Saturday night, which I pulled out on the last play of the game. A come from behind victory, not unlike the one the Indianapolis Colts pulled out on Sunday.

Thank you everyone for hanging in there with us.

Monday, January 18, 2010

Struggling White Count Leads to Hiding in Basement

First, let me correct a typo in my previous post. My white count as of that date was 1.8, not .8. It remains there. "So what", is the likely response from most of you. But the MM patients who read this will be tuned in to those numbers. My neutrophils were .8 and are now .6. (normal is 1.5 to 7) Neutrophils are the best of the white cells. So, rather than start cycle 3 of revlimid I got a neupogyn shot today to stimulate white cell production. I'm lined up for shots for the next 2 days, then we'll see if I'm ready to start the revlimid. In the meantime I've holed up in the basement to watch sports, westerns and comedies on TV in order to avoid exposure to any nasty bugs.

Given my response to the revlimid and the dipping white count, this could be my last cycle. Then, we'll be on to M.D. Anderson. It is possible I'll go through 2 more cycles, but I'm thinking that's unlikely. IGGs are now at 2000 (down from 4600 at the start) (normal is 700 to 1600) and M protein is now 1.4 (down from 3.2 before we started the steroids this summer). Before the transplant I'll have to go through another week of testing to restage my disease. I also have to be off the revlimid and steroids for 3 weeks or so, so the actual transplant may not commence until March. We're also starting the scheduling for Mike to go through testing and then harvesting of his cells.

Mentally I know Susan and I aren't ready for another 4 months of "treatment" away from home. But then, we weren't ready for any of this, so I guess we'll just pack it up and move on down to Houston for awhile. Her brother Gary is being so nice in his preparations for our "visit", including purchasing a recliner for my comfort. I call him regularly to remind him that he still has time to get out of town before we arrive. What would we do without our families?

Speaking of which, Catherine is threatening to sign up for the Yahoo triathalon team to raise funds for the Leukemia Society. Talk about inspiration! I'll plan on being in NYC in July just to see her finish. Don't let this post put any pressure on you, Catherine. But we're all waiting for your final answer. And since I'm not on facebook you'll have to post that response here.

Both Rifkin and Giralt continue to be very pleased with my response to the revlimid, as are Susan and I. As an aside, I just picked up my refill of 21 days of revlimid. A mere $8,000, which my insurance company and I split. Nothing like meeting my high deductible with one prescription. That's all for now.


Friday, January 15, 2010

Donor Selection

M.D. Anderson has preliminarily selected brother Mike as the donor. The criteria seemed a bit ambiguous to me so I don't think there was one overwhelming factor that dictated the decision. Tom thinks its favoritism towards a fellow Texan. He still has to pass the tests to make sure he is fit to be a donor. I've told Tom to stay in the wings in case we need a last minute replacement. Timing is still uncertain but we could be gearing up within a couple of months.

Revlimid continues to do its job. IGGs have dipped to 2000. The revlimid also hammers my white count (.8 on Monday) so I am still hiding from crowds, avoiding shaking hands, etc. Could this treatment turn me into an anti-social introvert? Unlikely.

I am so impressed by Rifkin's care of me since returning from Arkansas. He has literally brought me back from the edge. Although my bone marrow isn't working like it should, at least it's working to some degree. And he and his friends at M.D. Anderson and Mayo have found a regime to bring the cancer levels down and open the door for the transplant. We had our doubts this summer but, once again, we have a path forward. What a life!
Much love to all,