Two divergent paths

Good Afternoon All:

Again, I must apologize for the time between posts. I dissassembled most computers in the house to make room for some electrical work to be done and just got them put back together again last night. Appointments and schedules since Tuesday this past week have been pretty whirlwind and so finding a few moments to write a worthy post has been difficult. There is a topic of substance that I want to address with this post and I didn't want to short change it while balancing a laptop in the outpatient clinic and dodging nurses and bags of red blood cells.

On the eve of my last post my support team lost another member. Tuesday night my paternal grandmother, Martha Flickinger (she'd been divorced and remarried, hence the name difference), died of cancer. Like most cancer patients and survivors I have a fair amount of family history of cancer. This is my second grandparent to die of the disease and 3 of 4 have had more than one form/occurrence of the disease.

Grandma Flickinger had had breast cancer some time ago and some time after I was diagnosed cancer was found in her bladder. We spoke on the phone somewhere between my diagnosis and the time while her diagnosis was still pending. She conveyed at that time the conviction that she again had cancer based on what evidence existed--true to the outlook I've tried to maintain during treatment I took the optimistic route and suggested other possibilities. Needless to say, my grandmother and her medical team knew more than I did.

I've done a little bit of reading during my treatment about the mental state of patients. In one book the author speculated that many medical professionals simply do not wish to live to a ripe old age. They have spent a good portion of their lives witnessing the broad spectrum of human health and spent an inordinate amount of time treating those that were in the worst shape. The author continued to propose that for this reason health professionals when faced with a diagnosis like cancer would be more apt to resign themselves to the disease. It is an interesting hypothesis and one that I suppose could apply to my grandmother as she spent some time as a nurse. Perhaps it was from this sort of vantage point that she made her decision to forgo treatment for the cancer in her bladder or perhaps she simply didn't have the energy for the fight. In any event, she made her decision and the point of no return for receiving treatment came and went. She was cared for by Hospice and visiting nurses and she passed away in reported comfort in her own apartment Tuesday evening.

Since learning of her diagnosis and her decision to not receive treatment I have been wrestling with my grandmother's circumstance. The mere fact that our diagnoses were so close chronologically has created a link in my own mind between her experience with cancer and my own. While we may have started from similar starting points, our paths were divergent from the outset. I chose to be treated and resolved to beat the disease, she opted to forgo treatment. I have continued to keep my head up and to look to the future while she prepared for the end of life. It should come as no surprise, then, that our paths lead to very different places: while I begin to prepare for post-treatment life my grandmother's came to an end.

And yet, from the time I learned of her decision to not seek treatment the link I felt to her cancer diagnosis was a bit singed. There was always a nagging thought that her decision could have some weight or bearing on my outcome in some cosmic or karma-based way. The inevitablity of her death just seemed hard to accept, reconcile and to witness while I fought so hard to move in the other direction. The understanding and support I felt for her decision could not have jived with the attention that I was paying daily to getting better. For that reason we did not interact much during her final months. Prior to this we didn't call or write each other regularly though under other circumstances I feel certain that I would have reached out to her a bit more. Instead we kept tabs on each other through reports from my father.

These details come across as cold as I read them but I think both of us were rightly introspective with regard to the other's situation. My recovery from cancer and my grandmother's death from it are journeys that require stamina, courage, and rely on periodic displays of grim determination to get through the trying times. The strength for each of us to move to our desired outcomes simply would have been hard to come by if we kept running back to the point where our paths diverged to check on each other.

My grandmother was rooting for me to get better in the same way that I supported her decision not to. Along with the sadness that comes from her dying there is also a sense that part of my attention that had been wrested away out of concern for her has been released to return to the business of completing treatment and being cured of cancer. So perhaps the link between us is there still--out of her decision to die from her cancer perhaps I have been given the final burst of strength and determination I will need to complete my course of treatment and to achieve a cure for mine. It seems to me that I can honor and remember her best in this way and so I have resolved to do just that.

Jitters and tribulations

Good Morning All:

Got a nice surprise yesterday when I learned that I was going to sleep in my own bed last night. I got to go home around dinner time yesterday instead of lunch time today--a very welcome turn of events considering out other recent admissions have gone!

I do need to apologize for the radio silence though rest assured it comes with good reason and not because anything untoward has happened to me. As it turns out either the mother board or the hard drive has ceased to operate on my new laptop and so I was without a way to post to the blogs or check e-mail from about Saturday on. Since I'm home and have some white blood cells with which to operate I will set about getting this rectified ASAP.

By way of update, with my release from the hospital yesterday I am now down to just one remaining hospital stay and one remaining spinal tap. My out-patient regimen will continue into March and I will be moving into the maintenance program that will last me a couple of years when the intense treatments conclude. I am very much looking forward to replacing the frequent trips to hopkins, tubes in my chest, and volume of medicine with just a few pills and sporadic visits to the folks in Baltimore.

Finally, just a bit of humor for those who live or work with me. One of the pills I get from Hopkins during the A-Cycles (of which I have no more!) is a steroid. One of the side-effects is that it can make one excitable or jittery. I took my last dose of those pills last night and man you should see me this morning. I can hardly type or sit still--runs very counter to my normal demeanor. I can only imagine what I look like in my own home: standing up-sitting down, upstairs-downstairs, blogging-getting coffee (like I need that right now!). At any rate, much better being jittery here with some room to roam than a small room in Hopkins wondering when I'll get released!

--Russ.

Let me check my calendar

Good Morning All:

Chemo is underway, already have two treatments under my belt and will get another 6 or so during my in patient stay. By the time I leave here early next week I will have crossed off all but one hospital stay and all but one spinal tap.

As I wrote in an earlier entry, it is time to get my head up and looking to the future. For now, that tends to be the next few months as we try to plan for my return to work, our summer plans (vacation, summer camp for the kids), and Audrey's first day of school. In this process I have been surprised by a very seemingly innocuous occurrence that has meant quite a bit each time it has happened over the past couple of weeks.

As time has gone by and we've drawn closer to the end of my intense chemotherapy treatment we've also drawn closer to events at work and at home that I SHOULD be available for. It has been quite a downer throughout all of this to routinely have to reply to invitations that I could not possibly predict until much closer to the date of an event whether or not I would be available. I tried making educated guesses and was burned about as often as I was right. I was left to simply make very late RSVPs or, if pressed for an early answer, to decline with an explanation unless I was sure I'd be available.

Now, we are starting to approach events that are to occur in mid to late March. My delays in getting started on round 7 throws that timeframe into a bit of a shadow but my availability is clearly shifting from 'unlikely' to possible and even probable. This is a very welcome change and a source of optimism for me as the days go by.

This isn't to say that there isn't still trepidation about leaving the safety net of having routine treatment from the top notch health professionals at Hopkins. I think at this point, however, there are so many positive changes that come from a return to 'normal' (I will still be taking chemo medicine orally and have periodic follow ups at Hopkins) that there could be more health benefits in the form of positive 'vibes' to be realized that go beyond the pumping of medicine into my body and I'm ready to realize those benefits. I guess I could say I'm ready to join my mates inland on the island of Sicily--are you all ready for me?

Made It! Round 7 under way

Good Afternoon All:

The delay is over! My platelets crept over the 60,000 threshold and I was promptly whisked to a hospital room to begin round 7 of treatment.

This marks the beginning of a series of 'lasts'. This will be the last cycle A regimen that I will go through, my last hospital stay scheduled for 5 days, etc. I am definitely excited to be at this point finally.

I don't think that I actually posted an update regarding my little case of pneumonia. I had a CT Scan on Monday to re-assess how my lungs were doing and I learned that there was no further sign of pneumonia. I have a little bit of a lingering cough but certainly nothing to worry about.

--Russ.

Milestones

Good Morning All:

Despite being required to report to Hopkins every day during the past week it could not have worked out better. I saw a particular low point two weeks ago when I had to ask Nolan which he would rather have me at home for: his actual birthday (Monday, Feb. 9th) or his birthday party with friends, etc. on Saturday, Feb. 14th. Of course, I wanted to attend both but the way things were shaping up it appeared I would likely miss one of these and might have the opportunity to sway the start of the round 7 hospital admission to make certain that I could be around for the one that he chose.

As it turned out my counts dipped and the start of round 7 needed to be delayed and is still in delay. It appears that tomorrow could be it if my platelets come around. In the meantime I was able to be home for all of Nolan's birthday.

In years prior to this one, birthdays (mine and others) were seen as special dates during the course of the year that required reservations on the social calendar, perhaps some planning and work to make them special, and were often seen more for the chores they create than the milestones they are meant to celebrate. This is yet another 'thing' that has changed for me. It wounded me to have to ask Nolan to prioritize one facet of his birthday celebration over another because I might not be available for both. I was immensely relieved when I learned that I would attend both and would have the white blood cells to attend the kids' birthday party without sneaking my neutropenic body in.

This year I was able to enjoy the event of Nolan's 8th birthday in a way that I probably have not enjoyed his birthday since perhaps his first one. I spent less time worrying about how much the event cost, whether the kids were having fun, getting hurt, allergic to peanuts, going to get their goody bags, etc. In place of that worrying I watched Nolan in his element--Running around with his friends, smiling, laughing, and turning 8. I played host to the parents that came with the kids and visited with my parents and in-laws. I enjoyed myself immensely and was pretty tired afterwards.

This is the angle from which I want to watch all of the milestones. We celebrate them to celebrate them, not to create work for ourselves or to spend the money that we budget for such things. This is not to say that I won't do the chores involved in planning the events or spend the money to have them but the chores and bills will no longer BE the event as they have been in the past. Instead, the focus will shift to where it should have been all along--creating an opportunity for all attendees to celebrate in a memorable fashion. This would include the hosts who should be able to report that they celebrated a milestone rather than saying they 'hosted a party' when all is said and done.

I've got lots of celebrating to do and I plan to become quite accomplished at it.

--Russ.

Complicated

Good Morning All:

Trying to get a quick update in before I head out to Hopkins this AM. As I wrote in my most recent posts, I am continuing to go to daily appointments at Hopkins to treat a couple of infections--one in my catheter and another that appears to be the beginnings of pneumonia. No one at Hopkins seems terribly alarmed by either so I will continue to take my cues from them.

As it turns out, just before leaving Hopkins on Tuesday my nurse noticed a change in my catheter site and called over the charge nurse. After a brief consult they decided that my catheter was starting to slide out of place and that it would need to be replaced. Yesterday I had a long day at Hopkins capped off by the minor surgical procedures to pull out the old catheter and replace it with a new one.

While it makes perfect sense to me, the nurses looked at me as if I had sprouted a third arm when I suggested that getting a new catheter makes short work of the infection that had grown in the old one. In fact, I'm going to Hopkins today and the only item on the agenda is for me to receive the antibiotic treatment for the catheter infection . . . strikes me as odd, but what do I know.

I still have the tell-tale cough from the pneumonia and I'll be getting a follow up CT Scan tomorrow to see if how treatment of that condition is going. We are still looking at a Sunday or Monday admission date if the platelets cooperated. Since I was undergoing some surgery yesterday I received an unexpected boost to my platelet count in the form of a transfusion (so I didn't bleed to death)--we'll see if my body welcomes the new platelets and builds on that count or if they begin to dwindle due to infection, lingering chemo, etc.

--Russ.

Update

Good Afternoon All:

Just banging out an update while sitting here at Hopkins . . . I'm continuing to receive daily treatment for the infections that have been discovered. Other than being tired from the decreased opportunities to sleep, I'm feeling better with less coughing and sneezing. My counts continue to slowly recover and I'm no longer neutrapenic. The only sticking point are those pesky platelets. They continue to fall so I suspect that I'm in for a fairly lengthy delay as I wait for those to reverse direction and then climb to a level that will support the next round of chemo.

To some degree I'm OK with a little bit of delay here. Nolan turns 8 tomorrow and his birthday party is Saturday. I'd hate to miss either day and will be conflicted if we approach Saturday and my counts are such that I might get admitted. It might be the one time that I ask them to delay my admission date . . .

--Russ.

Well, now I've gone and done it. . .

Good Morning All:

I'm posting this AM from the outpatient clinic at Hopkins. On Tuesday I told you all that I had a cold. In the early evening hours of the prior day my temperature sneaked above the 38-degrees celsius threshold (100.4 degrees farenheit) for being considered a fever worth worrying about. I posted a 38.1. This happened in about the 8th hour of a 9 or 10 hour day as an outpatient. They halted my blood transfusion fearing that I was having a reaction and they drew blood so they could culture it and learn whether there was infection worth worrying about.

On Tuesday evening I received a call at 10:00 Pm from the attending physician who informed me that one of the cultures had started to grow and he was toying with the idea of having me come in that night! I was able to dissuade him since my temperature had not since crept above the 38-degree threshold (it hadn't crept above that threshold prior to that measurement either) and since I had an outpatient appointment scheduled just 11 hours from the time of his call.

Wednesday's appointment saw me in radiology for a CT scan of my chest and sinuses (looking for sources of infection) and receiving a blood transfusion since they ruled out my having a reaction as the source of the elevated temperature. Also while I was there more details began to surface about the infection I have. From the culture they are pretty certain that I have a bacterial infection in one, or both, of my Hickman lines. This involves one regimen of antibiotics. Additionally, the CT scan revealed that my lungs had a "pre-pneumonia" condition where fluid was beginnning to build--no doubt from the cold I had been suffering through. This involves a second regimen of antibiotics.

Both of these regimen require medication that is infused intravenously and a new set of procedures, skills, etc at home. Marla and I will be getting less sleep than normal over the next two weeks so if we look or sound tired and/or grumpy please cut us some slack.

For what it is worth I woke up this morning having no elevated temperature at all, less of a runny nose, and fewer coughs. Hopefully the cold is pretty well behind me and the treatment of these infections is as academic as the nurses make it sound . . .

--Russ.

Update

Good Morning all:

Just a quick update: The wait for my counts to return continues. I believe that I am on the verge of that recovery though I also suspect that I will have the normal delay in waiting for my platelets to return so that I might start the next round of chemotherapy.

I've been getting a fair number of transfusions (platelets and red blood cells) recently and I can see that my body is handling the B-cycle of treatment less well than it did the first or second time. My chief complaint at this time, however, is that I happened to wander into a cold virus while I don't have the white blood cells to combat it. I suspect that its a wimpy little cold that will quickly be vanquished once I've got WBCs but for now its running rampant and causing the nose to run, sneezes, coughs, headaches . . .

In any event, I'm trying to follow doctor's orders and to drink fluids and get plenty of rest.

--Russ.