health

Caffeine Therapy – Update #1

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So…I may have been talking tongue in cheek for much of my Caffeine Therapy article, but I was serious as a heart attack, and we all know how serious those Widow Makers are, when talking about the positive impact that caffeine has had on my mental state of mind. Before I started drinking coffee I never knew where I was going to be mood-wise. Some days I would wake up Dr. Jekyll, some days Mr. Hyde. It was very stressful. After I started drinking coffee again, or, more specifically, after I added caffeine to my diet again, life was much more normal, predictable, and pleasant for me…and the rest of the family. While I still get stressed out and tense relatively easily, even while caffeinated up, it isn’t nearly has bad as it would get while I was caffeine-free.

Consequently, when I visited the doctor for a checkup from the neck up…and down…this past Thursday, I was looking forward to finding out how adding caffeine to my diet has impacted my liver, since that is where it’s metabolized.

Well, the lab results showed that my liver component counts were pretty high. Here are the numbers (Read: Component, Low Range, High Range, Range Units, My Lab Results):

DIRECT BILIRUBIN, 0.0, 0.4, mg/dl, 0.3

ALKALINE PHOSPHATASE, 30, 120, U/L, 173

ASPARTATE AMINO TRAN, 0, 37, U/L, 100

ALANINE AMINO TRANS, 0, 40, U/L, 263

Now, I have no idea what all of these different components are, but I do know the docs look at them to determine how my liver is doing. I asked my oncologist if he thought I should stop drinking coffee because the counts are so high and he said no. He wasn’t worried about the impact of caffeine on the liver. In fact, he agreed with my assessment that it is probably the caffeine that is positively stimulating me mentally while suppressing the negative psychological impact of all the other drugs and stress from my inflictions.

He was, however, worried that the high counts indicated that Graft Versus Host Disease was flaring up in my liver. After examination, he also assessed that it was flaring up again in my skin and eyes. He wanted to take some “preemptive measures” (his words) by either raising my steroid dosage or by trying another drug called Cyclosporin. But the way things work with my care and treatment, it wasn’t his call. All decisions relating to my care that involve GVHD are made by a different oncologist, one who also is a nationally renowned GVHD specialist and he was not quite as concerned about the elevated numbers as the other oncologists on Team Kurt. In fact, the wife and I had lobbied the GVHD specialist to raise my steroid dosage the last time we saw him over a month ago. I could tell even then by the way that I had been feeling and how my skin had looked that the GVHD was flaring up. But the specialist’s primary concern is with the GVHD in my lungs and not so much with the GVHD anywhere else. According to him, the other areas are relatively minor concerns compared to the lungs and were no cause for alarm or any additional action. A month later he apparently still feels the same.

I’m guessing the GVHD doc wants me to focus on my upcoming week-long visit in April to the National Institute of Health where I will participate in a study to get FDA approval for a new Lung GVHD treatment.

Still, the other oncologist wants me and the wife back next Thursday so we all, to include the GVHD specialist, can get together and further discuss this GVHD flare up in the liver and elsewhere.

Until then.

Sayonara Marrowish

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[notice]Because I am no longer going to blog at my Marrowish website, I just imported all of its articles, pages, and comments into this site. The following Marrowish article discusses my reasons behind the change.[/notice]

I’ve been thinking about doing this for a while now and now is as good as time as any: I am going to suspend blogging here at Marrowish and blog only at my other site BOJIKI.

I’m doing this for a couple of reasons:

The primary reason is that things have radically changed for me since starting Marrowish back in December 2009: now that the cancer is gone and I have this Lung GVHD/Bronchiolitis Obliteran thingy, things just don’t feel the same for me around here–I feel differently about my relationship with the Lung GVHD than I did with the leukemia for some reason, which maybe I’ll try to explore and write about later at my other site; also, I’ve changed a lot since starting this blog, both physically (I certainly don’t look much like that guy anymore in the banner photo) and mentally–I’m ready to move on.

Sayonara Marrowish

Another reason I’m doing this is because I’m lazy–I’m tired of managing two sites. I don’t intend on taking this site down, so everything written to date will stay up indefinitely, or at least until the evil Prednisone overlord who resides in my head forces me to take it down. And I will still write about Marrowish-type issues–I will just be doing it at BOJIKI instead (look for the “Marrowish” tag in the Tag Cloud or articles filed in the “Health” Category).

In addition to this site, I am also going to suspend tweeting at my Marrowish twitter account. If you want to follow my health updates, along with any of the other BS I tweet about, like updates about my books and other writings, as well as my musings about current events, you’ll need to follow me at twitter.com/kurtbrindley.

This place, and especially all of you who stopped by here to offer your support, prayers, and encouragement, really helped me cope with some crazy stuff this past year or so and I am very, very grateful for it.

I look forward to seeing you all over at BOJIKI.

OK. That’s it. Sayonara.

Stimulating News

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Ever since mid-December 2010, I have been getting light headed whenever I stand or lean over. A couple of times I have come pretty close to passing out. The last checkup I had the doc took my blood pressure lying down and it was 135 over 70 something. He then had me stand up and took it again. It was 110 over 60 something. A pretty significant drop.

One of the many side effects of prednisone, the steroid I take to try to stop the deterioration of my lungs, is that it causes sodium retention. Because of this, the wife and I have really been cautious about my sodium intake, trying to keep it as low as possible. The doc thought that my low sodium intake was causing the light headedness so he recommended that I up my sodium intake a bit to see if that helps. I didn’t think it was the sodium and I let him know, but I said I would give it a try anyway since that meant I could eat more pickles.

After having a couple of days to reflect, the doc decided he wanted me to take a Cortisol Stimulation Test, or Stim Test as it’s referred to in the business. Basically, all the test consists of is drawing my blood, testing my cortisol levels, then injecting me with something that stimulates my adrenal glands, and then at the 30 minute and 60 minute periods after the stimulation, drawing my blood and testing the cortisone levels again. Because the adrenal glands were stimulated, the level of cortisone should be higher.

I just received an email from my doc that says: Your Cortisol stim test was normal response. There is sufficient amount of Cortisol, according to the test, to protect you against orthostatic hypotension [dizziness].

That’s good news. However, even after increasing my sodium intake, I still getting dizzy when standing. Any of you smart people out there have any ideas what may be causing this? My gut is telling me it’s just a reaction to the cocktail of medicines I take every day but if you have any other ideas, please let me know.

Wishful Thinking

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There have been many o’ mornings throughout my life that I have laid in bed, fighting with the snooze button on the alarm clock, wishing that something would happen in my life that would make work go away forever.

We all know the old saw: Be careful what you wish for because you just might get it.

Well, I got my wish.

I just didn’t expect it to be answered in the form of a debilitating lung disease.

I was hoping more for…oh, I don’t…newfound riches…being elected king for life on a small tropical island…alien abduction…just about anything other than what I actually got.

But as the new saw goes: It is what it is.

So now what?

Before the lung disease, I was messing around with that leukemia thingy for the past year and it had kept me and my family plenty busy. I was back and forth to the hospital so much and feeling so crappy I didn’t have the time or effort to do much more than sit around, take my meds, and feel sorry for myself.

But just when I was starting to feel somewhat like what I used to feel like before all that leukemia thingy…just when I was beginning to ponder what it was going to be like returning to a normal life (normal meaning back to the daily morning battles with the alarm clock, the cursed commutes, and, of course, work)…just then…without any warning…BOOM…the doctor dropped the bomb on me.

Lung disease.

A lifetime with the constant feeling of slow suffocation.

A lifetime of high, daily doses of steroids.

A lifetime with the constant threat of diabetes and of osteoporosis.

A lifetime with a degraded immune system.

And, by the way, a lifetime of no more work.

I didn’t see that coming.

So much for my dream of helping to build a small company into a megarich, international conglomerated corporation and becoming rich enough to buy a professional sports franchise.

I guess I’ll just have to stash that dream away with my other unrealized dream of becoming an international rock star.

It all still hasn’t really sunk in yet.

I’m only forty-five years old. Regardless of my disease, I plan on hanging around for a very long time.

What the heck is a guy who has reluctantly been holding some form of drudgery…er, I mean, a job…since he first started delivering newspapers sometime around the time our nation celebrated its bicentennial birthday supposed to do with all of his newly “free” time?

What the heck am I supposed to do with myself for the next however many years I have left on this rock?

Well, I do have other yet unrealized dreams.

One of them is to write.

Not just bloggery writing like I am doing right now.

I mean to really write.

To write books.

And not just to write them.

To have them published.

And not just to publish them but to write them in a way that people want to read them.

I want to write in such a way that enables me to be able to proudly call myself a writer…An Author!…and not feel like a creepy, amateurish dork when I do.

So that’s what I’m doing.

I’m writing.

I’ve written.

I’ve written a novel called THE SEA TRIALS OF AN UNFORTUNATE SAILOR.

I’ve written a collection of poetry called POEMS FROM THE RIVER.

They will be available via e-book and pdf on (fingers crossed) February 19, 2011.

You can read a synopsis and first chapter of the book at bojiki.com/book.

But you know what? I wrote most of the novel and the poetry collection before I had all this free time that I now have. I wrote them slowly, sporadically, painfully, over a fifteen-year or so period when I was a working class stiff.

Now that I can fully devote myself to writing I should be able to blissfully write for hour after hour every day, right?

I should be able to crank out a novel every six months, or so, right?

Well, maybe…but, I have quickly discovered that writing fulltime is hard.

I am finding it hard to be disciplined enough to write every day.

It’s hard to sit down with laptop in hand…er, I mean on lap…and to think of stuff that other people might want to read.

I am finding that writing is like…

work!

Back when I was writing while I was still working out in the real world, writing was more like a hobby. I didn’t have to do it. I did it because it was fun…or at least cathartic.

It was fun writing crappy poems and crappy short stories and a crappy novel because I didn’t have to worry about feeding my children from the proceeds of their sales. I could pretend I was a writer without actually having to make the commitment of calling myself a writer.

Sure it stung a bit every time I received a rejection slip from publishers, but who cared. I still had a day job.

But now I have no cover. I have found that writing full time is hard work and I have no fallback position.

Well, I’m on disability so I guess I could always fall back onto the position of doing nothing. Do nothing but sit around, collect my monthly payments, and…

wait…

for…

something…

to…

happen.

Zzzz…

Who the hell wants to do nothing for the rest of your life when you have a once-in-a-lifetime opportunity to recreate yourself into whatever you want to be (provided that whatever you want to be can mostly be accomplished within the confines of your home…and the internet)?

I have declared that I want to be a writer.

And I find that’s it’s hard work.

And now I feel a little exposed.

And a little vulnerable.

And a lot like a creepy, amateurish dork.

But I don’t wish for it to be any other way.

Because we all know to be careful of what we wish for, right?

Lung GVHD by Any Other Name

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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.

A Bone Marrow Biopsy

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If you’re like me, you’ve probably never witnessed a bone marrow biopsy procedure before. That’s right, even though I’ve had more procedures done to me than I care to remember, I have never actually seen the procedure being performed on me. This is because, 1. I always have to lie on my stomach, and 2. I’ve always been too scared to try and look.

But during today’s procedure, I mustered up the courage and asked my herculean wife to take pictures of it so I could finally see what it was all about. I call my wife herculean because she’s been exceptionally strong and courageous for me throughout my entire cancer experience; and after I saw the pictures, it amazes me even more how strong and courageous she really is. I know for certain that if the roles were reversed and I had to be there to support her during one of these procedures, especially during the first time, I would pass out. For real.

I also asked my wife to take the pictures so I could share them with others who may be interested in learning and seeing what a bone marrow biopsy is all about. But please be warned, these pictures may be disturbing for some people. If you’re still interested, please click the more link.

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Hair

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Warning: This is potentially a TMI post. Read at your own risk!

Kurt with hair
Kurt with hair
Before my cancer and all the chemo, I saw myself similar to how Ricky Bobby saw himself in the movie Talladega Nights: I’m just a big hairy American winning machine, you know. That was me. I was confident, happy, had a wonderful family, a great job, felt strong and in okay shape, and I had a thick mane of hair on my head and a decent coat of fur all over my body. I was no back shaver, mind you (not that there is anything wrong with those of my friends who feel the need to shave the back…you gotta do what you gotta do) but I definitely had some hair to be proud of. But all of that, especially the confidence, the being in shape, and the hair, changed after the chemo.

Now I know some of you are wondering—I know I was before I started getting the chemo, so I asked my nurse—does one lose ALL their hair from the chemo treatments? The answer I got was that it depends. It depends on the person, the type of chemo, and the amount of chemo received. I would just have to wait and see.

It turned out that during the first phase, things moved slowly hair loss-wise. It took several weeks before any hair on my head started falling out and a couple more weeks before my beard began thinning out. I never noticed the loss of any body hair. I will say, it was very unsettling when the hair on my head began falling out in earnest and I would wake up in the morning to see big piles of it all over my pillow and bed. Once that started happening, I went directly to the barber and had my head shaved.

Shaved head
Shaved head
It’s not as easy as you think to get your head shaved. When I went, my regular barber was crowded so, not wanting to have to sit around and explain to the regulars about my cancer, I went to another barber that I had only been to once before. It was empty so I went in. The barber was a female and after I sat down and explained that I wanted my head shaved, she almost seemed offended, but in a cheesy, middle-aged flirty kind of way. She gave me the third degree and wanted to know why I wanted my head shaved. Still in no mood to discuss my cancer, I just said something rather curt about me being sick of having such thick hair to mess with. She reluctantly began shaving it off, but as she did, she went on the whole time about how a guy should never shave off such a nice head of hair. (I have another story about my hair and my youngest son’s ill-fated attempt at trying to shave if off…but that’s for another time.)

I had a couple of weeks off between phase one and phase two treatments. During the time off, the hair on my head and face started growing back in rather quickly. But again, after a few weeks of the phase two chemo treatments, both head and facial hair began thinning out. Again, I did not notice the loss of any body hair. This time, because the hair on my head was so short, I was able to shave it off myself.

Before the transplant
Before the transplant
During the first two phases, while I did lose a lot of hair, I never lost all of it on either my head or face. But all that changed after I received the large doses of chemo in preparation for my bone marrow transplant. About two weeks after the treatment, hair everywhere began falling out. And by everywhere, I mean everywhere. After about a month, the only hair I had left on my body was my eyebrows and my eyelashes. My body was smooth as a newborn baby. I won’t go too much into details, but I will say, things feel a lot different without hair in the places where you’ve been used to having it. I was left feeling very incomplete and somewhat insecure. I didn’t like it at all.

But now, finally, it’s all coming back and I’m beginning to feel much more like my old self. And by old, I mean much older. As you can see, even though I looked older than my age before, this whole cancer ordeal has aged me even more. And even though I’ll still be completely gray on top, I’ll be glad to have it back and I promise not to complain when it once again gets too long and too thick and too hot on my head. And I won’t, in frustration, ask my son to shave it off (again, we’ll leave that story for another day).

Coming back!
Coming back!

My Cancer Class, 2011

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At the beginning of any new journey, maybe it’s starting with a new company, going back to college, or signing up for fitness classes at the local gym, it seems that you can easily identify those who are just starting out. Like you, they are the ones who are just learning the ropes of the new system. They don’t know exactly what to do, where to go, or how to get there. Like you, they just look new. Over time, whether intended or not, a bond will form between you and the group of new travelers and you will begin to identify yourselves as a sort of class. Maybe you will become friends with some of the people from your class or maybe you won’t, but the chances are you will always feel a special kinship with those who traveled on your journey with you.

My cancer journey was no different. Practically from the moment of my diagnosis, I began to notice others who had also just begun on their cancer journey. New cancer patients are especially easy to identify: they are the ones who have a constant stunned look of disbelief on their faces; they are the ones who are irritable, stressed, and anxious, not just from recently having learned about their disease, but mostly from the side effects of the steroids and other new drugs they had just started taking; and they are the ones who still have their hair.

After diagnosis, I was immediately admitted to the hospital for the first two weeks to begin my initial phase of chemotherapy and medications. From time to time I would see other new cancer patients as either I or they walked laps around the ward; or, I would see them pass by my door on their way to the little kitchenette for the always available ice cream or cup of noodles. Sometimes we would wave or nod our masked heads at each other. Oftentimes, we would just simply shuffle by each other without any acknowledgement.

After I was discharged from the cancer ward, I was admitted to the Inpatient/Outpatient Clinic. At IPOP, new cancer patients usually have appointments every day. Every day, my wife—my caregiver, my inspiration, and my guiding light—would pack me up and drive me to the hospital. The drive could take anywhere from 45 minutes to an hour and a half, depending on Baltimore traffic. When I got to the hospital, I would reluctantly don my mask, reluctantly disinfect my hands, reluctantly enter the clinic, sit down, pull my ball cap down tight over my freshly shaved head, and glumly wait to be called by the nurse. Meanwhile, my wife, always positive, always cheerful, would sign in for me in the registry, make herself a cup of coffee, grab a magazine, and then sit beside me and try to cheer me up. Other familiar masked faces would also be there waiting with their caregivers.

Soon my wife became friends with several of the other caregivers and, through her reports, I would be able to track the progress of the other cancer patients from my class. It helped me to hear about them from my wife. Knowing that others are on a similar journey as yours, that others are just as confused, just as sick, just as scared as you are, provides a certain level of comfort and a sort of release. I was able to let go many of my fears and better accept my condition because I learned that nothing that I was going through was unique just to me.

Unfortunately, there are many, too many, cancer patients in my class. And even though I was familiar with all of them and drew strength from their silent encouragement and solidarity, I only came to personally know a few of them by name. And of those, I only know the current fate of two, which is too bad because I often think about all of those faces who I had come to know so well and wonder how they are doing now. I try not to wonder who didn’t make it.

Next year my cancer class will graduate. Sometime next year, we will meet with our oncologist and we will be released from his or her care. Our disability insurance will stop and we will hesitantly and apprehensively return to work. After graduation, we will be free and encouraged to begin other new and exciting journeys, which is why graduations are often called commencement ceremonies. And when our new journeys do commence, we will look around and see that there are others who are also just starting the journey, too. And, while we will hope that we never have to travel down the same road as we did on the journey we just ended, we will know that we will all be better travelers for it.

Our Cancer Year

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BOOK | NON-FICTION | GRAPHIC NOVEL | HEALTH
OUR CANCER YEAR
by Harvey Pekar
RATING: ★ ★ ★ ★ ★

Harvey Pekar
Harvey Pekar
I have been neck-high into the medical establishment since my leukemia diagnosis in November 2009. Consequently, while I do not consider myself an expert of the establishment by any stretch of the imagination, I do believe that I am far too acutely aware of it. But, I guess that is to be expected from someone as critically dependent upon it as I am.

In addition to my practical experiences with hospitals and doctors and examinations and extremely long needles, I have also spent much time reading about the establishment, especially that aspect of it which relates to the treatments of leukemia and chronic graft versus host disease (cGVHD) of the lungs.

Most of my medical-related reading has been as research conducted on the internet.

Thank god for the internet. I am one of those annoying types who like to be knowledgeable just enough about something to make me, if not dangerous (which it just may), then certainly annoying.

I’ve come to find out over the past three years that doctors are a lot of fun to annoy.

While there are probably more books about cancer out there stalking, I mean, stocking the shelves than there are cancerous cells, I don’t recall ever reading any of them.

I don’t know why. Maybe because they all seemed too sanitary or too personal or too impersonal or too whiney or too who knows what.

I didn’t so I just left them all alone; that is, until I learned that the legendary Harvey Pekar had his own version of a cancer story to tell.

Pekar, who died recently, is famous for his graphic novel series AMERICAN SPLENDOR, in which he chronicles his life as a VA Hospital file clerk in Cleveland, Ohio. It doesn’t sound like much to work with — Cleveland, file clerk, VA Hospital — but somehow it has endured through the years and was even turned into a flick starring the always spot-on Paul Giamatti as Pekar.

In 1990, Pekar was diagnosed with and treated for Non-Hodgkins Lymphoma. Four years after surviving through that experience, he collaborated with his wife Joyce Brabner to publish an AMERICAN SPLENDOR-like graphic novel called OUR CANCER YEAR.

OUR CANCER YEAR is a gritty, honest and, sometimes, horrific portrayal of what life was like for Pekar and his wife while battling the disease.

But it is about more than just his experience with cancer. Pekar’s wife is also a comic book writer who focuses her work on peace projects. Through her efforts, we are provided side story glimpses about Operation Desert Shield and her work with teenage peace activists. And, because they had recently purchased a home at the time of his diagnosis, we also have the added stress that comes with buying a home on top of everything else that is happening to them.

I found the book interesting because Pekar really was able to bring out the hope and heartache and stress and pain that one, and one’s loved ones, must endure throughout the entire cancer experience, from first finding out about the disease, to all the damage that the chemotherapy treatment does to the body, to the overwhelming toll it takes on those closest to the cancer patient trying to care for him. It was also interesting to me to compare how he managed to cope with the disease versus how I tried to manage.

Let’s just say he is a glass half empty kind of guy. While I typically am too, I never felt as down about the disease as he apparently did.

While Pekar and I had many similar experiences battling our respective cancers, we also had many differences. One of the most significant differences was a painful experience that he had to go through that I never did (at least not yet–knock on wood). Pekar contracted Herpes Zoster, also known as shingles. For some reason, Shingles are a big threat to chemotherapy patients. Thankfully, my doctors were very aggressive about it and put me on an antiviral drug called Valtrex (Valaciclovir) as a preventative measure for at least a year, and which I will probably take for the rest of my life. Pekar also suffered much worse hallucinations and anxiety than I did as an effect from all the drugs cancer patients typically have to take.

While most of what you need to know about the medical establishment in general and cancer in particular can be found on the internet, some things can’t. In my perspective, if you really want to get telling insight into the hardships that come with having cancer you either need to experience it yourself first-hand, which I emphatically do not recommend, or you need to experience it in a less graphic but completely realistic and touching way, like reading Pekar’s graphic novel OUR CANCER YEAR.

~~~~

Rating System:
★ = Unreadable
★ ★ = Poor Read
★ ★ ★ = Average Read
★ ★ ★ ★ = Outstanding Read
★ ★ ★ ★ ★ = Exceptional Read

After the Transplant

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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.