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Dayglo Eyes and a Uniform Surprise

To celebrate the one-year anniversary of my bone marrow transplant yesterday, the wife and I partied down with my ophthalmologist for my quarterly eye exam. Okay, an eye exam is not much of a party, but since the results were good—my eyeballs are GVHD and infection free—I’ll take the eye exam over a party-hardy party any day.

While the results of the exam were good, it didn’t come without its hassles. The worst part about it, after the hour-and-a-half wait to see the doctor, that is (What is it about doctors that they think they can keep us waiting so long? Don’t they realize that—ah…don’t even get me started about doctor etiquette. We’ll save that rant for another day.), was having my pupils dilated so the doc could check for CMV and other infections and then having them numbed and stained yellow so she could perform a Glaucoma Test.

In addition to being blinded by all of the light my dilated pupils were sucking in, I had yellow fluorescent DayGlo-looking crap leaking out of my eyes all day long. I looked like some squinty, jaundiced-eyed mutant. In fact, couple my yellow fluorescent eyes with my big ol’ pumpkin head and I looked like I could have starred in one of Maurice Sendak’s books.

Speaking of DayGlo, I’m reminded of a time back in my navy days when I was deployed on some ship, I forget which one, and we were manning the rails getting ready to pull into some port, I forget where. Everyone was wearing their summer white uniforms for the occasion.

While everyone was wearing their summer white uniforms, not everyone was manning the rails. Many sailors were still responsible for making sure the ship functioned properly, to include the boatswain’s mates and other “deck apes,” as sailors responsible for the care and maintenance of the ship and other real navy stuff that I don’t really have a clue about are affectionately called.

While most of the crew stood around bored, doing nothing except standing and anxiously waiting to get to the pier so the liberty call fun could begin, the deck apes were preparing mooring lines and anchor chains and doing other dirty and greasy tasks that basically destroyed their lily-white uniforms. Too bad for them.

We have a saying in the navy: “Choose your rate, choose your fate.” They’re the ones who wanted to be a boatswain’s mate, ergo, they’re the ones who get the nasty jobs and uniforms that go with it.

It was an early morning port of call and, as there wasn’t much light to see by, some genius came up with the bright (pun intended) idea to have all the deck apes and other stuckies responsible for getting the ship tied safely to pier carry fluorescent yellow glow sticks in their shirt pockets so they could be seen more easily during the working party evolutions.

I think you can see where this is going.

By the time the ship finally got tied up and all those crazy deck apes got finished heaving and ho-ing and to-ing and fro-ing, most of the glow sticks that were being carried around in their pockets had broken and had leaked everywhere. By everywhere, I’m not just talking about all over the deck apes’ grease-and-dirt-covered summer white uniforms, I’m talking everywhere like all over the deck, all over the superstructure, all over the ropes that extended out to the pier, all over just about everything.

When that ship pulled alongside the pier, she glowed like a fluorescent yellow floating lantern. Too bad we all didn’t have some of the yellow glaucoma testing goop to put in our eyes. Just imagine how that would have looked to all the locals to see a fluorescent glowing warship pull in with the entire crew standing around with mad glowing eyes.

Fluorescent glowing warships and sailors with mad glowing eyes. How about that for a new national defense strategy?

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Lung GVHD by Any Other Name

As I’ve tweeted in the past, I’ve contracted both acute and chronic Lung Graft Versus Host Disease as a result of my April 2010, Bone Marrow Transplant. For clarity’s sake, or perhaps to confuse things even more, I think it is important to be more specific in naming my lung disease. In my lab reports and in discussions with my doctors, in addition to Lung GVHD, it is referred to by several different names: Chronic Bronchiolitis; Constrictive Bronchiolitis; Focal Follicular Bronchitis/Bronchiolitis; but the name I will refer to it as is Bronchiolitis Obliterans, or BO. According to the doctors, it is the most correct name, and, most importantly to me, it’s the most fun to say.

Say it: Bronchiolitis Obliterans.

Wasn’t that fun?

I am not going to attempt to explain the disease in detail; however, what I will briefly say about it is that it a non-reversible, degenerative lung disease that compresses and scars the bronchioles which blocks, or obliterates, the airways. Unfortunately, there currently is no cure for the disease, but it can be treated with a high-dosage, anti-inflammatory steroid regiment.

I was also diagnosed with Acute Lung GVHD. Another name for this is Lymphocytic Bronchiolitis. Not quite as much fun to say as the other one is it? I have been on a steroid regiment since the end of October 2010, and the good news is I have positively responded to the treatment. My acute symptoms lessened as soon as I began taking the drugs. What a relief it was. Those who saw me prior to me starting the treatment can testify what a pitiful state I was in. In addition to the Lung GVHD, I also had skin, mouth, and lower GI GVHD. The steroids is taking care of them as well and now I have put on close to twenty pounds and I am getting stronger and stronger through stair climbing exercises and weight training.

Of course I still have the Chronic GVHD, or Bronchiolitis Obliterans, and always will; however, because I have responded so well to the acute conditions of the GVHD, the hope is that the steroid treatment will be able to at least stabilize my chronic condition and prevent or postpone for as long as possible, any further degradation.

Yesterday during a checkup with my GVHD doctor, I learned that I will probably be on the steroid treatment for the rest of my life. Not cool because the side effects are horrible; but, like I often have said about all the crap I put up with during the leukemia fight—it’s better than the alternative. I also learned that I will probably never again be able to return to work, or to a normal, vigorous lifestyle like I used to live. I don’t yet know what to say about this–I’m still processing the news.

I do know that exercise and a healthy diet is going to more critical to me now than ever before in my life. I need to continually strengthen and condition my heart and body so that it becomes as efficient and as effective as possible with limited and possibly lessening quantities of oxygen.

Bronchiolitis Obliterans.

At least it’s still fun to say.

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After the Transplant

Thinking back, the amount and potency of the chemotherapy that I received during phase one and phase two of my treatment were a pittance compared to what I received for my bone marrow transplant. During the first two phases I thought to myself, ha, this chemo stuff ain’t living up to all the hype. Sure, I lost my hair but it started growing back not too long after the end of each phase. And I never got so sick to where I had to become intimate with the toilet. Not so during the two weeks of chemo treatment before and after the transplant. The doctors really laid it on me with a vengeance then. I got pretty darn sick, especially in the mornings. It’s almost three months later and I would even say that I may still be suffering somewhat from the effects of the chemo I received prior to and after the transplant. And it doesn’t help any that I’m still getting a small dose of it shot into my spine every two weeks.

While I don’t get sick to where I have to pay homage to the toilet anymore, I do get some bad heartburn for a couple of days after the spinal taps. I also still get light-headed when I stand up and, because of my low energy levels, I can only contribute minimally to chores around the house. My counts are steadily rising to normal but they are all not there yet. My platelets are still low which makes it very easy for my skin to cut and bruise and very hard for the injuries to heal. I’m still anemic. It seems that I have a symptom of Graft Versus Host Disease (GVHD) in my mouth: it is almost completely dry all the time, which makes it hard to eat and sleep, and there are tiny bumps all over my cheeks and gums, which feel gross. I have poor circulation and swelling in my legs, especially my left leg. This is probably because the blood clots that I had at the beginning of all this were in my left calf and have left the veins and arteries a little worse for wear. The toes on my left foot are numb. My vision frequently blurs. And, I’m still mostly hairless which is really starting to annoy me; although some peach fuzz is starting to sprout about the chin.

Considering how bad I felt immediately after the transplant, all that I described above is almost irrelevant. I actually feel pretty darn good and I am very thankful for how well I am progressing and all of the support I am receiving. My days are always light and relaxing. I mostly divide my time between reading (my reading list is found at the bottom of this blog), cruising the Internet, taking naps, sitting by the pool, and watching the boob tube. I try to take long walks every other day or so. Fortunately I live out in the country so when I walk I get to experience the beauty of nature. I get to see wildflowers and woods and ponds and creeks and cows and horses and sheep and goats and all kinds of birds (if I’m lucky I’ll get to see majestic cranes either walking the creeks or flying above the tree line) and friendly folks along the way. My dog Shikibu, the best and cutest dog in the world, often joins me on my walks and she always makes them even more interesting and enjoyable. But probably the best part of my day is when, after the sun begins to set and the temperature cools down, my wife and I hop in the hot tub and spend quality time soaking, reflecting on our good fortune, and planning for our long future together.

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Feeling Pretty Darn Good!

It seems the better I feel the harder it is to keep folks updated on how I’m doing. Now that I am feeling better I have more options to do other things other than to sit and think about how bad I feel. Now, mostly I sit around and read and write and take walks with the wife and eat all of the delicious, healthy, cancer destroying foods that she prepares for me. So that’s why I haven’t been blogging or tweeting as much. Besides, it’s redundant for me to keep posting: feeling good again today day after day. But since I’ve stopped getting the regular doses of chemo and I’ve been taken off of most of my meds, that’s exactly how I feel. In fact, I feel better than I have in a long time, even since before my diagnosis.

Yesterday I met with my longitudinal doctor, that is, the doctor who has been my consultant and adviser since I was first diagnosed and who will be with me until the end. I have been seen by a boatload of other doctors for a boatload of different reasons, but it is my longitudinal doctor who I depend on most. I met with him and his boss. The purpose of this visit was merely a formality to give me one last checkup and their final diagnosis and authorization for me to proceed with my transplant. Everything is good. My counts are perfect and based upon all the tests I’ve had…spinal taps and bone marrow biopsies…the amount of cancer in my body is less than 0.04% or something like that. Pretty good, indeed.

I have only one more consult with a doctor between now and when I get admitted back into the hospital on 3/23/10. The consult is for the heart and as far as I’m concerned its just a waste of time…an evil plot to make sure I don’t stay away from the hospital too long.

Like I said, on the 23rd, a week before my transplant, I get re-admitted to the hospital so I can begin getting juiced up with some new kind of chemo. This kind will completely kill my bone marrow in preparation for the transplant. I’m definitely not looking forward to the chemo crud again, but it will mean I am one step closer to getting to the transplant and beyond. Again…pretty good, indeed.

So, as far as my blogging and tweeting go, no news is good news. I reckon once I get juiced up again I’ll be back to complaining on a regular basis as to how bad I feel. Misery loves company.

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My Donor and Me

So, in a little over a month I am scheduled to have my bone marrow transplanted. It sounds daunting but according to my nurse practitioner it will be rather anti-climactic. Apparently, I will receive the bone marrow harvested from my donor in the same manner I would receive a blood transfusion: hang the bags, hook them up to the pump, plug the line out of the pump into my Hickman Line, and then lie back and relax. I expect it might not be quite as easy to relax during the transplant as a typical transfusion but still, my job during this transaction between my donor and me is relatively easy. My donor, on the other hand, has a much more difficult task.

It amazes me that there is someone out there somewhere in the world who is not just a perfect match for me, but who is also willing to follow through with the donation. I have no idea where my donor lives or how far he or she has to travel for the procedure–he or she could live halfway around the world for all I know. Fortunately for the both of us, my hospital will cover the travel expenses and my insurance will cover the costs of the medical procedures; but still, what a disruption to life he or she is willing to make on my behalf, especially since my donor knows nothing about me, other than my life depends on his or her marrow. Likewise, I know nothing about my donor, other than he or she is truly generous and caring.

I am told that a year or so after my procedure I will be allowed to make contact with my donor, provided my donor wants to make contact with me. I will have to make that decision when the time comes. Right now I appreciate the anonymity of the process. It enables me to focus on preparing myself prior to the procedure and healing myself afterward without having to feel obligated to establishing and maintaining a relationship with my donor at the same time. Even to me this seems completely selfish, but it is how I feel.

Besides, how does one thank someone for such grand generosity anyway? Right now the only way I can think of is by simply saying thank you and trying to live the best life after the transplant as possible. We will have to wait and see if I feel differently a year from now.

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Bone Marrow Transplant Schedule

Wednesday 2/24/10
@7:30am-Registration on the 1st floor of the Weinberg Building
a. Diagnostic lab studies.
b. @8:30am-Bone marrow aspirate and biopsy. Located on the 2nd floor of Weinberg in the infusion area.
c. Meet with R.N. at 9:30am. Located on the 2nd floor of the Weinberg Building.
d. Ct scans of the chest and sinus at 10:10am. Located on the 2nd floor of the Weinberg Building.
e. Chest x-ray at 11am. Located on the 2nd floor of the Weinberg Building.
f. @1pm-Spinal tap with IT chemo. Located on the 2nd floor of the Weinberg Building in the infusion area.

Thursday 2/25/10
a. Pulmonary function studies at 8am. Located on the 7th floor of the Outpatient Center. Please arrive by 7:30am to register.
b. EKG. Located on the 1st floor of the Outpatient Center in Express Testing. Register on the 1st floor of the Outpatient Center.

@12pm-Registration on the 1st floor of the Weinberg Building
c. @12:30pm-History and physical exam with CRNP.

Friday 2/26/10
a. Heart scan at 7:30am. Located in the Nelson basement in Nuclear Medicine. Please arrive by 7am.

Thursday 3/11/10
@7:30am-Register on the 1st floor of the Weinberg Building
a. @8am-Bone Marrow Education Class. Located on the 1st floor of the Weinberg Building in the Patient and Family Services Suite, suite 1210.
b. Meet with Dr. for a brief consultation at 9:30am.

Monday 3/22/10
@12:30pm-Register on the 1st floor of the Weinberg Building then go to IPOP-Located on the 5th floor of the Weinberg Building
Take the elevator to the 5th floor and make a right. Go through the door and check in with the receptionist.
a. Registration
b. Diagnostic lab studies
c. Meet with Dr. to sign consents at 1pm.
d. Meet with a nurse for an ideal body weight.
e. Meet with admitting to do your paperwork for admission on 3/24/10. Located on the 1st floor of the Weinberg Building. You must keep this appointment.

Wednesday 3/24/10
@12pm-Admit to start chemotherapy. Do not wait for a call to come in. Report to the nurse’s station on 5B.

Wednesday 3/31/10
Bone Marrow Transplantation

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The Registry Works!

My wife ran into my doctor this morning while walking about the hospital. After exchanging pleasantries and having a discussion about setting up an appointment for me to meet the new head doctor of oncology, my wife asked my doctor what he thought about the possibilities of the match for my bone marrow transplant.

The doctor said the match is good news, of course, and then he went on to explain that out of the initial eight that were targeted from the registry for additional screening, there were actually two exact matches: the one MUD (Matched Unrelated Donor) that has us all excited, and one other. Unfortunately though, the one other match cannot be used. It cannot be used because the match is me.

The National Bone Marrow Registry and screening process really works. I do not remember when I registered but after all of these years it was still able to find me as a match for myself. Finding out I was a match for myself makes me both happy and a little sad. It makes me happy to know that the system works. No matter how long someone sits around in the system waiting, if their type is a match, they will be found. But it makes me sad in the sense that after all these years I was never found as a match for someone in need. And now, even if I come up as a match, I never can be of help, not even to myself.

Visit www.marrow.org for more information about the Bone Marrow Donor program.

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Donor Update – 1/20/10

Email excerpt from my Bone Marrow Donor Coordinator:

When dealing with national and international registries it takes a long time compared to family members who arrive ASAP.

World Wide I only found 8 potential matches; of samples we requested we only received 2 of them this week; they are in typing now. I do not know when the others will arrive or if they are available; we have not heard anything from the other 6.

In a perfect world I will have 3 matches but we will not know until the Class II and High Resolution typing is complete if they match. If I find 3 matches I will put them on hold.