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.