Bingo!

The last Tuesday of every month a volunteer group comes to Hopkins and puts on a little bingo game for the patients who happen to be couped up at the time. I either never crossed paths with this event or was simply unaware it was going on when I was here at other times.

"Bingo?", you ask. Well without getting into the merits and drawbacks of the game itself, lets just say I'm not opposed to a good game of bingo (though it sure is more exciting when you play for cash prizes). This event, of course, were for pretty simple prizes that would mean something to cancer patients or July 4th themed trinkets.

When the announcement went out regarding bingo I thought for a bit and decided to go. After all, I keep lamenting about how bored I am as an inpatient . . .I certainly hadn't played bingo yet.

I meandered out of my room a few minutes before the start and followed another patient with her nurse escort. She clearly had mobility issues, but in this place you come to admire those that continue to press on with what they want to do despite some profound physical limitations or degradations.When I got to the room where they were holding bingo I deftly guided my medicine pole around the table and chairs to take a seat away from the door to make room for all the others who would come. My fellow traveler was helped into a chair at a table right by one of the two doorways into the room.

The blood cancer unit takes up the entire 5th floor of the Weinberg building and is comprised of 4 units labeled A,B,C,D. Each unit contains 15 beds. As far as I know bingo was open to all 4 units. I don't really know what I was expecting in terms of attendance. I probably didn't have enough time to actually contemplate that. But as patients arrived, or more appropriately didn't arrive, I was amazed to find that only 4 patients opted for something new to do.

It started me thinking. Is this a referendum on bingo? Or perhaps I ought to feel thankful to be in my physical condition that such 'activities' are an option for me? Obviously the answer is that it is probably a combination of both. Bingo is a silly, elementary game and admittedly can drone on a bit. But I would bet that there were a few patients that were in no condition to make the simple walk to play bingo, even if they were yearning for something different to do. Everything in perspective . . .

I guess I'll let everyone know that I won twice. Both times I picked out things for the kids--trinkets really, but it will be nice to return home with a peace offering for all they endure as a result of my cancer and the resulting hospitalizations.

I also want to share a somewhat bizarre moment from bingo. During the bingo game the patient I followed to the room was joined by what I would assume was her husband. At one point about halfway through (30 minutes) there was a bit of a commotion coming from where she was seated. I recall now that she seemed nervous about going to bingo in the first place based on the number of reassurances the nurse was giving to her as we walked to the room. At any rate, as I looked over at her it was clear that she wanted nothing more of bingo. She muttered something about feeling paranoid and needed to get up. Her mobility issues made it difficult for her to get out of the folding chairs we were sitting on.

All the while, the person calling out the bingo numbers kept right on going as if nothing was going on. So for the remaining few in the room, we were torn between what was going on with a fellow patient and marking the dots on our bingo cards!

In truth, I'm certain that patients trying to help move other patients is prohibited, so I don't feel too bad that I didn't get up and help. One of the other volunteers did the right thing and ran to get her nurse, who came quickly to assist the patient. Between the nurse and the husband they were able to get her up out of the chair but only after I heard the husband say "you have to push with your legs."

I must be thankful for what has not been taken from me as a result of all this. I can choose well for myself what I want to do (when I have a choice). I remain physically well, despite the disease. And finally, for all the chemicals that have been pumped into my system over the past two years I retain the mental faculties, more or less, that I entered this process with.

Who knew an hour of bingo would yield an opportunity for a bit of introspection and, if you distance yourself, a bit of humor. Glad I went.

As always, thanks for reading.

--Russ.

Not Exactly As Planned

Good Afternoon, All:

Well. Back to inpatient status for me. I had a pretty unpleasant Saturday evening that resulted in a very high temperature and a hospital admission. The biggest disappointment is that Audrey's birthday party starts in about 45 minutes. While I would not have been able to attend the kids party (can you imagine the numbers of germs in a gymnastics center after several birthday parties over the course of the day?), I was looking forward to the family party where my parents and my inlaws would come to our place for dinner and to give Audrey her presents. I was looking forward to doing a good portion of the cooking--we have a huge slab of salmon for the grill (I'm so proud. My 6-year old chose salmon for her birthday meal.) and the fixins for a very nice cold summer soup. Not only will I not be cooking, or eating, what I'm sure will be a very nice meal, I'll be getting something from the Hopkins food service instead. Disappointing to say the least.

There has been no recurrence of the fever that landed me here and there have been many discussions regarding the mix of antibiotics, anti-virals, and anti-fungals resulting in several changes. I, and the doctors, believe that one or more of my previous medicines were causing the fevers. One in particular they would pre-dose me with Tylenol before giving me the IV--my money is on that one as the source of yesterday's fever. Fortunately that was one of the medicines that have been removed from the equation. Here's to hoping that the fever doesn't return, the mix of medicines is a good one, and I get to go home very soon.

Finally, thanks to all who have wished me neutrophils. Please keep them coming as the neutrophils have not yet returned. I am coming up on the stretch of time where perhaps the neutrophils would start making appearances and so I'm hoping to encourage them as much as possible.

As always, thanks for reading.

--Russ.

Father's Day

Good Afternoon All:

First things first--I'd like you all to know that I am writing this post from Hopkins, but while getting antibiotics, etc. as an outpatient. It seems that the whining I did and was the subject of my prior post had results. Specifically, I think Marla was worried, asked my primary oncologist to check in on me who then pushed for me to be released. I have since learned that most people who have gotten the chemo regimen I just received are not released to the outpatient clinic at this time point. While I cannot say that any of this are indicative of some result that I had drawn up when I started whining, it certainly is a nice surprise.

I came home this past week on Thursday and am now back in the habit of coming to the outpatient clinic daily. Those first couple of days were very quiet in the house as Nolan and Audrey had been farmed out to my inlaws since school had drawn to a close and camp hadn't started up yet. That meant that Marla and I had some quiet evenings at home together. That was nice.

It was even nicer when the kids finally came home yesterday. They had learned that I was released from the hospital and I got a very nice hug and kiss from both when they arrived home. This morning I was greeted with "Happy Father's Day!" and more hugs and kisses. While I don't think it was anyone's intent, this serendipitous movement from the ranks of the in-patients made it possible for me to be home with the family on Father's Day. It has already meant more than I thought it would and I know that there is more to come when I return home from Hopkins this evening. My being home also means that I will be 'around' for Audrey's upcoming 6th Birthday--talk about exciting!

Nothing is particularly easy about my being home right now. Besides the daily trip to Hopkins, I am still suffering under the effects of the most recent chemo regimen. My taste buds are all fouled up and I generally have no appetite. I actually lost about 20 pounds at one point but am now slowly gaining them back as I find meal options that both appeal to me and hold some benefit in the form of protein. Just this morning, Marla lamented that she had to try and figure out what to make me for my Father's Day dinner. She commented that she would have typically just done steaks and be done with it. I couldn't help her much since I simply can't know from one meal to the next what will taste good or look or sound appealing. I think I'd like to give steak a try, but it also might be a somewhat expensive failed experiment in feeding a cancer patient.

Anyway, things continue to progress. Though it is a bit of a long shot, we are hoping that the chemo is still active in my body and will ultimately wipe out all the cancerous cells. I'm hoping that the continuing difficulties with mouth sores, taste changes, even some renewed hair loss points to such continued activity. The other two items that are important right now is that I remain infection free and that I finally begin to make my own neutrophils.

Thank you for the response to my prior post. It is always helpful to hear just how many individuals are behind me. I'd like to ask you now to spend your energies 'wishing' me neutrophils. Something tells me that I can't help but grow neutrophils with this kind of support behind me.

Good Morning All:

I have a couple of updates for you regarding my health and perhaps an insight or two into my mental state here at Hopkins.

First of all, I completed my second chemotherapy regimen as of Tuesday last week. This regimen targeted the Myeloid cells in my bone marrow with the aim of wiping out all cancerous cells. I underwent a bone marrow biopsy on Friday. While the full-fledged biopsy results won't be available until Tuesday or Wednesday this week, the initial view under a microscope wasn't what the doctors were hoping for. The doctors reported seeing fledgling cells and that those cells did not appear healthy. This comes from a very small sample as the biopsy did not provide much in the way of marrow, but clearly not the slam dunk results I might have hoped for.

I have since learned that there are transplant options that would be available to me even if I am unable to get cancer-free again. The unfortunate part is that the best transplant option would require me to completely kick the cancer again--something that is proving to be more and more difficult.I also learned this weekend just how much of a whiner I can be.

I have now been couped up at Hopkins for three weeks and many of the entertainment options that saw me through the early days have now begun to lose their luster. As a result I find myself napping more and moving more quickly from activity to activity in an attempt to keep myself occupied.

This past weekend Nolan and Audrey went to Hershey Park and to the annual family reunion. Both are events that I would normally have relished. Of course neither were options for me and, as it turns out, Marla decided to skip both and let my parents take the kids. So Marla visited on both Saturday and Sunday. Clearly, I am nowhere near the host I once was. Pretty much all I did was complain to Marla how bored I was, and when I completely lost any idea of what to do, I simply took a nap while she read a book. This isn't how I intend to greet visitors and Marla made all sorts or excuses for me. Perhaps some of her points were valid but I still can't help but feel bad that all I can find the capacity to accomplish when I get visitors is to complain about how bored I am. I will be looking for new and interesting things to do in the coming days. Something that will keep my attention and perhaps even delay my going to bed at night because I need to get to a good stopping point--so far I haven't found it.

At any rate, I'm going to wind up this post and work on getting my head screwed on straight--Hopefully I can get myself there soon (or get myself released from the hospital) before it starts impacting my outlook and my interactions with the doctors, nurses, and staff here at Hopkins.

As always, thanks for reading.

--Russ.

Good Morning All:

Mostly an update this time around but perhaps there will be items that will shock and astound you as I recap the past week and look ahead.

I believe that I've already detailed the fact that my recent bone marrow biopsy revealed cancer and that this would require a new chemo regimen. I'm now over half-way through that regimen. I was in the middle of the first three days of chemo when I posted last week. I can now safely say that those three days of treatment were the harshest I have experienced. Almost immediately I became fatigued. I got fevers each night during treatment and generally felt awful. The biggest surprise came on Tuesday last week when I learned that where I relapsed with a diagnosis of Acute Lymphoblastic Leukemia, the ALL seemed to have been succesfully treated but when the marrow returned it was being crowded out by another form of leukemia, Acute Mylogenous Leukemia. So the treatment I am receiving is a standard AML treatment.

I was a little taken aback that my entire diagnosis had shifted and the means by which I learned of it was through an off-hand comment during rounds long after the treatment protocol had been settled upon.

I am now roughly in the middle of the second three days of chemo. Thankfully it is a different drug this time around. I would say that I tolerate this one more like I have tolerated past treatments . . . except . . . yesterday afternoon/last night was the worst 12 hours I have spent in the hospital. After a wonderful visit with my wife, kids, parents in the morning into the afternoon I started to develop a fever. The doctors were interested in learning something from this fever and so they did not want to give me Tylenol to break the fever. The result was a 12-hour ordeal where sleep didn't come and I was losing fluid so fast that it felt like I was a grape turning into a raisin.

Between 2:00 and 3:30, several things happened. I lowered the temperature in my room as cold as it would go. The doctor changed an antibiotic in my regimen, and my pleas for hydration were finally answered. By 5:00, the fever was gone.

I often wonder about the sleep-factor in my recovery. Nights like last night are frustrating on many levels, but the disregard of my need for sleep bordered on disturbing. At any rate, this final round of chemo ends tomorrow and then the waiting game begins. Hopefully my counts return and the marrow is clean. The goal, of course is to get to this point and then quickly move into a Bone Marrow Transplant soon thereafter.

As always, thanks for reading.

--Russ.