Graft-Versus-Host Disease – Moffitt Cancer Center researchers test drug comb…

A trial on alternate treatment approaches to reduce the risks of GvHD following allogeneic stem cell transplants. I had the current standard (combination of Tacrolimus and methotrexate); the study shows that a Tacrolimus/sirolimus combination may be more effective). An article for the interested.

Graft-Versus-Host Disease – Moffitt Cancer Center researchers test drug comb….

Week 15: Moving Further Down the Transition Path

Overall, have continued on my strong recovery track, with slow and steady progress.

A friend asked me what has changed this time. The spontaneous answer that came out was not the deeper questions about the ‘meaning of life’ and priorities (the first stem cell transplant did that!) and the enhanced appreciation for family and friends (in the end, it is about the people who are important in my life).

It was  more my appreciation for the smaller things. These range from our walks together outside,  the pleasure in figuring out the intricacies of the family tree, savouring and enjoying food, and even to the mundane washing dishes and shovelling snow. They all remind me of being alive and being able to do things. Expect as I move along the recovery path, these will return to being taken for granted to a certain extent, but hopefully not completely.

Another change is I tend to procrastinate less. I have a more acute sense of time (the awareness I may have less of it), and the need to use it, and so things get done more quickly with less delay (and I use lists to keep me on track). Funny that on the bigger things, I have greater patience with time (the universe will unfold in due course …); on the small things, I just want to get them done to have time for what is more important.

This week was Clinic Week and I am transitioning more quickly than expected to the next stage. A bit confusing and surprising as the roadmap keeps on changing – but I was always warned that my treatment was more bespoke than standard and that it would be adjusted according to how I was responding. This recap of my last 4 clinic visits:

  • 25 Oct: We discussed the need or not for a scan with the clinical doctor and came to the conclusion no scan needed given no treatment implications.
  • 1 Nov: The senior haematologist was adamant about the need for a scan to check my lymphoma given treatment implications and opportunity to ‘steer’ my immunosuppressant dose (Tacro)  to increase my GvHD if needed to combat my lymphoma.
  • 8 Nov: The Fellow reduced my Tacro to half-dose but with a scan still planned.
  • 22 Nov: This week, another of the senior haematologists took me off Tacro completely and reduced my Entecort (steroid for stomach) dose, with no scan planned until 6 month mark in the new year.

As it is a group practice, with cases reviewed weekly or biweekly as needed, I am comfortable that all of this has been hashed out by the doctors. I did mention to the haematologist the different things I had heard from all the different doctors and how it is confusing to me. She simply stated that there are differences of opinion and that there is not an automatic right response to many of these questions. Constantly adjust the approach depending on the patient’s situation and closely monitor seems to be how they do it.

Interestingly on the scan question, she again noted different approaches but, with a smile, part of the reason for doing scans is to ‘complete the file’ for research purposes, rather than patient benefit! So bureaucratic procedures are not unique to the bureaucracy (not to diminish the research reasons).

In the end, not unhappy with the change, as I prefer fewer scans to more (have had more than enough radiation etc over the past few years) and am being ‘steered’ in any case. Sort of like having my cake and eating it too!

No major side effects since stopping Tacro (burbling in stomach seems to be the main way my donor tells me he is there, some very minor rash activity). So I have reached another milestone more quickly than expected (thought this would be more at the 5-6 month mark). Howevder, as the haematologist reminded me, I am not out of the woods and can still get GvHD, so it is more the one-year mark that will be the next real milestone.

I asked what the impact of stopping the immunosuppressant would be on my immunity and she noted that it would help but it will take time (no Handel Messiah this Christmas). But for the moment, things going well, and they are very pleased with my progress.

In terms of other issues, I raised issues of toe tingling and numbness, as well as occasional leg cramps and pain. The first may be tail effects of chemo and should dissipate over time. The second is the normal reaction to building up muscle strength and again should go away over time (my tests this week were walking up 5 flights of stairs given a slow elevator – the first 3 were easy, after that more huffing and puffing!, and shovelling snow which was easier than expected)

And on the trivial milestone side, my internet access to the hospital expired and I realized I did not need it given the reduced frequency of my visits!

For Woody Allen fans, we watched Woody Allen: A Documentary on PBS this week. Great sympathetic portrait of his work over the past 40 years, well put together between interviews of him, his close collaborators and critics, interspersed with some great clips from his films. Really fun to watch how his films have developed over the years (including the clunkers). Assume it will eventually be available on iTunes or other services. Of course, if you are not a fan, there are other ways you would like to spend 3 hours or so!

An update on my consumer curmudgeonly complaints:

  • Best Buy corporate office got back to me, asked a few questions, and quickly resolved the Price Match issue by giving me the appropriate credit. Back in my good books, particularly that they mentioned they would provide feedback to their call centres for future such issues.
  • Sears continues to fluff it. Corporate referred it back to their call centre staff, who offered less than 10 percent of the amount at issue. I refused and told the agent to escalate the issue – I had not written to the Corporate Office for my concerns to be dismissed in that way. To be continued – the issue is not just the money but respect for clients – so far, Sears failing on both aspects.
My son and my brother are here this weekend for a belated birthday celebration. As always, a real pleasure to have him around the house and chat about what we are both up to. We spent more time chatting together rather than watching movies, along with his sister. Good connecting time.

Looking forward to my Clinic-free week. While there are a number of movies we want to see (at deserted matinées – Margin Call, My Week with Marilyn, in addition to catching up with some of the older movies that may or may no longer be playing), the weather has been so good we have focussed on walks. Never thought I would hope for a day or so or bad weather!

For my American readers, I hope you had a good Thanksgiving with family and friends.

Week 14: First Clinic Free Week

My first week without a clinic visit (apart from the regular Hickman dressing change Fridays). The irony of having fewer medical appointments than others! And the same mixed feeling during any transition, hospital to out-patient, weekly to bi-weekly, a sense that I am losing a ‘security blanket’ while gaining my ‘freedom’ – a great trade-off, but there is a small sense of loss.

As the clinic notes have provided much of the core narrative of the weekly updates, expect that my posts during the off-clinic weeks will be shorter, all of which is good and reflect ongoing progress.

I am now off all nutrition supplements and my weight seems to be stabilizing nicely at my pre-transplant, pre-fatten up level. I am finding with all the walking we are doing that I am having some muscle pain (had to stop doing the stairs two-by-two for a while) but find that it dissipates after a few days. So I walk! Also some numbness and tingling in my toes, likely a side-effect from one of my many medications, which I have to ask them about. Some insomnia as well, but nothing that prevents me from my activities during the day.

And 10 days out from the change in dose of my immunosuppressant (Tacro), no major effects apart from a more burbling stomach but otherwise normal.

A reminder just how fortunate I am to have a good benefits plans (as well as just how much medication I am on to manage my condition): I shifted from 20 percent co-pay to catastrophic drug coverage, where I only pay $1 per prescription (including for my most expensive drug which costs about $3,400 per month). Appreciate what you have.

I have started my vitamin supplements (Orthomol Immun) which helped me rebuild my strength last time.

I have been emerging from my hermit life and having more walks with friends. Great way to catch up, we all like walking, and it is safer being outside than inside as I still have to be careful. Some great supportive messages on my achieving the 3 month mark, one person, particularly active on the Leukemia and Lymphoma Society Community Board (one of the better ones), told me that the one year anniversary was even more sweet (he is over the 5 year mark). A number of mini-milestones before I get there (scan results, removal of immunosuppressant, removal of Hickman) but that is the next big one. Bit too early to start a countdown however.

I continue to have a lot of fun with the family tree. While still going through the somewhat mechanical photo scanning process, coming across a number of old letters from various military campaigns or family events that provide more flavour to the lives lived. And like all projects, I am getting more efficient with my workflow, discovering the ins and outs of Family Tree Maker and some of the small apps that make life easier (Image Capture, Preview). On the other hand, given the amount and size of the files, our four-year old iMac is starting to feel slow!

We have watched Italian films this week, starting with the charming Il Postino, the story of friendship between a barely literate Italian fisherman, the famous Chilean poet Pablo Neruda, and how poetry helps the fisherman woo his girl. Nice change to watch a romantic film, well acted and filmed, and one that reaffirms the power of words and relationships.

We also saw Visconti’s Le Notti Bianche (White Nights), adapted from a Dostoyevsky short story about a lonely man Mario (Mastroianni), a newcomer to town and a woman, Natalia (Maria Schell), also lonely as  she has always lived in isolation, with her loneliness intensified because she is in love with a man (Jean Marais) who may or may not ever return to her but who continues to occupy her life. Over four nights, Mario gets to know her, falls in love, and in the end loses her when the lover she has been waiting for returns as promised, after a year’s absence. Well written, directed and acted.

Next week is a clinic week and while I have my usual small questions, the bigger question will be next steps, understanding better why they lowered the dose before any scans (unlike the original plan), and getting a better handle on potential next steps.

Otherwise, our usual activities will continue; I always find it surreal that while objectively I am still weak and vulnerable, life on the surface is deceptively normal – and healthier to enjoy it that way.

Week 13: Made it!

I made it to the 3 month mark! While far from through with the marathon, it does mean I have passed the highest risk period, and have recovered well from the transplant with manageable GvHD effects. So we celebrated by going out to one of our favourite restaurants that has tables spaced far enough apart that we need not worry. Celebrate each step is part of the process.

This makes me think back to the ‘awful’ Princess Margaret Hospital consultation on June 20th, when I was presented with 20 percent likely mortality in the first 3 months, with an additional 30-40 percent mortality over the balance of the next two years. The doctors here, while being equally clear on the risks, had put them in a more positive context of my general health and previous experience with the auto SCT – and warned me not to get too caught up with the averages, noting that the risks continue to reduce as time passes.

Getting past this first big milestone is the first step for which I am truly grateful. And perhaps foolishly, I am less worried about the remaining 30-40 percent range, having made it this far.

The bigger question, as the senior haematologist discussed last week, is that while we know the transplant is working, we don’t know whether it has enough ‘edge’ to help fight my disease (i.e., if the transplant is successful in itself but without my new immune system ‘taking on’ my mantle cell lymphoma, then it will have all been somewhat academic). Somewhat ironic possibility when you think about it, but given the alternative …. I try and largely succeed in not dwelling on the what if!

While in last week’s clinic we discussed the theoretical options of ‘steering’ my immunosuppressant dose downward should the CT scan show something of concern, this week’s visit started the change.

I graduated from weekly to bi-weekly visits (more free mornings for me) and they halved my immunosuppressant (Tacro) to ginger a bit more GvHD in advance of the scan. So I have transitioned, a welcome step, with the next milestones being the CT or MRI scan later this month, and then eventual cessation of immunosuppressants. As always, there is adequate discussion, but then things move more quickly than one had expected.

I had a fellow examine me, rather than the regular staff (more experienced than interns, last step before becoming a full doctor) and he did the thorough pre-CT scan physical check of my lymph nodes with no issues. Reassuring pending the scan.

We discussed likely side effects from the halving of Tacro (last time I had an immediate but temporary increase in my rash). The usual: rash, throat pain, diarrhea. To date, has not been rock and roll at all, but all minor and under control with some minor stomach issues – just enough to know that something is happening but nothing to make me worry. No need to revert back to the earlier dose that I can see.

My bone density test came back normal (one less thing to worry about), my blood counts are strong and my hair is getting close to Peter Mansbridge length. Ironically, in my effort to build up my strength by going up the stairs 2 at a time, I pulled a muscle, so back to being more careful. Doesn’t impede my regular walking fortunately.

And amusingly, my weight is increasing so quickly that I now have to get back to being normal person and watch what I eat. So back to a more conventional diet and checking labels for how few calories they have, rather than how many!

As always, I watched the annual Remembrance Day ceremony, and this year it was particularly meaningful for me as I go through the family history, seeing the names of those who did not make it, those who were luckier and did, and those who remained on the home front but were also affected. And I discovered that the owner of our local bakery’s grandfather was one of the Canadians killed in Hong Kong, again a reminder about how much that particular war affected so many of us.

One of the risks of having more time on one’s hands, is being more curmudgeonly on bad client service experiences (a bit silly to post but given that we all have similar horror stories, nice to be in a position where I have the time at least to make the point with companies!):

  • Sears, for not acknowledging that parts should not fail on a fridge less than two years old, and not meeting its commitment to get back to me within 3 days. So letter sent off to the CEO laying out the issues and the hopelessness of their  customer service department.
  • Best Buy, for having a Price Watch guarantee that guarantees that they will not match prices. Again no satisfaction from client service, so copied the email to a senior executive.
  • Bell Canada, for incompetent call centre staff who could not understand a simple credit issue and took over 20 minutes to transfer the call to someone who was competent and assured me the check was in the mail – it was and I received it last week, so it was a communications failure more than the actual meeting customer needs.
  • And lastly, a good example, Ottawa Hydro, which had been massacring one of our trees to save the hydro lines and quickly agreed just to cut the tree down to save them future work and us the unsightliness of a Night Before Christmas looking tree. No fuss, no muss.

To make it easier for my readers to find the posts that concern me and my journey, I have created a ‘Weekly Updates’ category under the ‘Categories’ pull-down menu on the right to make it easier to only see the weekly updates. Time saver.

Have had a number of great emails and calls this week and am starting to do walks again with friends and colleagues. Crowd scenes to be avoided but I can lighten up a bit while still being careful.

We watched a charming and tender movie, Departures, concerning a concert pianist who becomes an undertaker in rural Japan. While the premise sounds odd, it is a beautiful and moving movie about reconciliation: reconciliation with one’s talents, reconciliation with one’s past, reconciliation with the important people in his life. Serious yet with moments of humour, and above all tenderness. Well worth seeing – the reviews criticized it for being too sentimental but there is power in sentiment!

We also watched My Tehran for Sale, part of a ‘new wave’ of Iranian cinema that goes beyond the regime approved stories of village life and captures the youth scene in Iran. And with the irony that the protagonist ends up in an Australian immigration detention centre ((Woomera), with even less freedom than in Tehran. Not as strong as Persian Cats but a moving portrait of how youth continues to push the limits, how they try to navigate an increasingly repressive and paranoid regime, and that becoming a refugee brings its own risks. And unfortunately, life imitates art, you may recall media coverage of the actress, Marzieh Vafamehr, who was sentenced to prison time and lashes – according to last reports, the sentence was lifted on appeal.

This week is my first clinic free week and I intend to enjoy it! Nothing special planned, just the usual building up of strength through walks and the like, despite the colder weather. Overall, life is good!

Week 12: Transitioning to the Next Stage

A good but at the same time frustrating clinic visit this week.

On the good side, they remain very happy with my progress post-transplant, in terms of how I look and feel, appetite, activity levels, blood counts etc. Could not be better from their perspective, and I am clearly transitioning to the post-three month stage in their view.

On the frustrating side, the difference of opinion between the clinical doctor I saw last week and the senior haematologist this week was striking on both minor and major issues. Three differences (haematologist perspective):

  • Taking of IVIG (immunoglobulin) to boost my immunity. No need for it, not normally done for transplant patients unless infection issues. One less thing to worry about.
  • ‘Bleeding’ me to reduce my iron content. Not until the new year, when my haemoglobin count is higher (it is essentially donating blood, and as he put it, now I would need more than juice and cookies to get up!)
  • More significantly, the question of a scan or not. He was very categorical – we need to know if there is any disease remaining or evident as there is a treatment implication. In essence, should the scan be negative, I would continue on the same course; if positive, they would stop the immunosuppressant (Tacrolimus) to ginger a greater GvHD reaction, and use immunotherapy more actively. As he put it, while there are few ‘arrows remaining in the quiver’, there is a window in the next few months to ‘steer’ the treatment if needed (better be ‘steered’ than drive myself into the ditch!). A sobering reminder, no matter how well I feel now, overall my life remains on a ‘knife’s edge’ given all the factors that need to be balanced.
There is, of course, a hierarchy and the senior haematologist trumps the clinical doctor. Moreover, he is the main haematologist who walked me through the decision-making process, and I have a lot of trust and confidence in him. We then turned to the more philosophical discussion and the difference between medical imperatives (need to know and react) and personal values (do I really want to know, or just live). He knows me well enough to tell me I tend to the pragmatic side, and given that there is a treatment implication, I should go for the scan. Hard to disagree – have come so far down this road that it would be silly not to give it the best shot. Hopefully my Christmas present will be a negative scan, and all this worry will be for naught.

He also, as he has done in the past, crystallized where I am in the process, noting their were four elements and indicators to the transplant process:

  1. My blood marrow is working (blood counts good)
  2. My donor likes me (appropriate level of GvHD)
  3. No infections
  4. No recurrence of my illness – mantle cell lymphoma

For the first three months, the focus is on the transplant process and the first 3 factors, where I have done well. I am now transitioning to the stage where I have to worry about whether the transplant is working with respect to my illness, hence the scan. So it is major progress, even if scary in many aspects. No champagne just yet!

I appreciated his explanations and approach. However, the contrast between the two means they really do need to get their act together better and be more consistent. And I have to remember to keep on probing, asking, and challenging to ensure I understand the implications, and that the medical team understands that the notes on my iPad are being actively used to work with them to provide the best care for me. Remember, never assume, and always repeat questions!

My October most popular posts:

Cancer Terminology and Language – | White Coat, Black Art

Organizing And Administering Our Own Care 

Why Supplement Studies Haven’t Panned Out – Health Blog – WSJ

Alternative medicine: The illusion of control : Respectful Insolence

Hospital social media marketing

And in terms of the top items clicked (some ties here):

Cancer Terminology and Language, Robert Buckman (as above)

A Voice, Still Vibrant, Reflects on Mortality (Hitchens)

A Doctor’s Letter to a Newly Diagnosed Cancer Patient

10 Reasons Why You Have to Change Doctors

The Golden Rule is Wrong

Why You’ll Never Hear Me Call Myself a Cancer Survivor

The Sugary Secret of Self-Control (Willpower)

My family tree work has become a bit all-consuming and has crowded out reading time. I find I need to balance the ‘brain’ work (historical research, reviewing documents) with the ‘brain-dead’ work of scanning documents and photos and labelling them. I feel my chemo brain after about an hour on the former, a reminder again of what my body has gone through and the nature of the recovery process. But important to have a focus.

We have been blessed with wonderful fall weather which has been great for lots of walking. Also making progress in climbing two stairs at a time (still hard but not as difficult), starting to do some basic yoga stretches again, and work on my arms with weights. I am gaining weight to the extent I can cut back on my supplements (one Boost rather than two a day), and I am starting to get back my head of hair!

The rebuilding process takes time, cannot be rushed, and takes place in the context of lots of rebuilding beneath the scenes following the assault of radiation and chemo. But getting there.

We watched a few hard films this weekend. Sophie Scholl: The Final Days, based upon the true story of German students (the White Rose group) who circulated anti-Nazi pamphlets in Munich in 1942 and were either executed or otherwise punished. Almost more a documentary than a historical drama, understated in tone, with some of the scenes between the interrogator and Sophie particularly gripping. Whenever I see a movie like this about someone who was able to be so steadfast and courageous under such circumstances, apart from admiration (one of the ‘crazy ones’ to use the more banal Apple pop ad), I always wonder what I would do if faced with such moral choices. Of interest as a historical film, but not great as a film in itself (no Downfall).

Yol, a Turkish film set in the 1960s I think, covers the experiences of prisoners on leave for a week, from both a personal level (family and family ‘honour’ challenges, overall military presence and oppression). 5 prisoners, 5 different stories, all with their own individual tragedies, well, if sparingly told, and gives an insight into the diversity of Turkish society, history and cultures.

My formal 3 month anniversary is in 6 days so to avoid any ‘jinx’, will break out the balloons next week, not this week. A more significant milestone is our son turns 20 this week, which we will celebrate during his next visit, but these are the milestones I live for.

In the meantime, more of same, hopefully, and we will see if I get another interpretation or surprise at clinic this week.

Week 10: Bounce Back

What a difference a week makes as this has been a real bounce back week, although it started with a few bumps.

On the good news side, the combination of Entocort and salty broth settled my stomach and allowed me to have a normal appetite and food intake, include greater variety of foods and a marked difference in my energy level. It also eased the stress on my kidneys, that was of concern to my medical team.

Back to feeling human. While it is still taking longer for me to gain weight, at least I am no longer losing weight (I have lost a total of 20 lbs since the beginning, only some of which was ‘surplus’!) and am largely eating normally – this weekend was a breakthrough in that respect, and makes a big difference physically and psychologically (real food with real taste!).

The bumps included reacting to a change in my Tacro level (decrease in the evening) a week ago Friday. My rash flared up almost immediately over the weekend for about 24 hours. While I debated whether or not to call in to the hospital, in the end I decided to wait a bit. Sure enough, it went away on its own, showing how my body and my donor are learning to get along. Now, I have virtually no rash left, and so far that does not seem to be an issue (always hard to know how much of a rash the medical team wants to see and when – more questions for next clinic).

No longer a solid wall!

Ironically, they have put me back on the original Tacro dose as my Tacro level was too low after all that, but it was an experience! And interestingly, the protocol on how long one takes Tacro has changed; the previous head of the Clinic favoured a shorter period, the current head favours 6 months, so 6 months it is (he believes this gives longer control over GvHD and so we have to trust his judgement). As a practical matter, it means that the next milestone after month 3 will likely be month 6 – every quarter.

I also had a quick scare with some vision issues (blurring) similar to when my MCL relapsed. All the old fears came back but the doctors were not worried about it, could just be a fluke, but obviously I need to report it if it comes back again. I have to rely on my new immune system to wipe out any remaining MCL cells.

And while my blood counts are strong and doing well, another aspect of my immune system is low, so I will get monthly boosters of intravenous immunoglobulin (IVIG, a blood product) to help give me a boost. Not a big deal, but just another thing to have to deal with, with the only benefit to see the nice staff at the Medical Day Care Unit again!

I have had a number of vignettes recently that give me perspective and remind me what I have:

  • At clinic this week, we had our usual neutral, glum and I guess worried look waiting look when another couple came up to us. She – the caregiver – spontaneously embraced my wife, and then started a very warm conversation about how they understood what we were going through, and how they had gone through it 5 years ago. A rare touch of humanity in what is a fairly sombre waiting area, and so nice to see how both of them rolled with the punches of the various treatments with such a positive attitude. Touching.
  • In contrast, I found myself admiring the cut of an executive’s suit, obviously impatient, waiting to get on with it, reminding me how I felt when I had made it through the first time, was fully back at work, filled with the day-to-day importance of my job. And I could not help thinking, please give him more time than I had to enjoy that life, and for him to be careful not to take it for granted.
  • Great news from Avi, who discovered my blog when he was diagnosed with MCL, and we started a conversation back and forth to help us through our various treatments and complications, who finally made it through his Hyper CVAD successfully and is now in recovery mode.
  • And less great news from Brian who stumbled across my blog while looking for a photo of a roller coaster to describe what he was going through with his son’s AML (a form of leukaemia, see his blog Walking with the Waltons), and with whom we started a thoughtful and caring discussion on faith and religion. No child or parent should have to undergo what the Waltons are undergoing, their faith is a great comfort to them, and my thoughts are with them.
  • And closer to home, some biking accidents of colleagues that remind me again of the fragility of life. One young woman, by all accounts well-liked and respected was killed to the shock of all, another, with whom I worked with closely for about 4 years, and who had wonderful spark, energy and drive, and with whom we were able to drive change, has been off recovering from a concussion for the past few months. Sad and sobering.
These vignettes are a mixture of good and bad news, but again reminders to treasure what we have, savour life, not take things for granted, and as one of my favourite quotes from another colleague, remind one to “Give an extra hug to your kids, spouse, significant other, as you go out the door each day”.

On a more mundane level, I am having some fun in some work-related files (nice to not have the day-to-day worries and responsibilities however!). I have been working with litigators on an affidavit for a court case which not only brings back some of the work that I did but more interestingly, is intellectually challenging to see how the legal process works, and always enjoyable working with bright lawyers.

Some of my earlier government work is now subject to academic analysis, and I am enjoying reading their take after a few years. Mixed as would be expected given the range of academic opinions but overall the changes seem to be sustainable and have changed the dynamics. And lastly, an initiative that started well over a year ago is now public and getting reasonably good press; my former team has carried that one well. Not nostalgic for the work environment but just a nice reaffirmation that the work I did mattered.

My reading progress through the David Landes’ book is slow and steady but I am enjoying the world view that it covers. Movie wise, with our son in town, a classic old war movie, The Guns of Navarone, with Gregory Peck, David Niven, and Anthony Quinn. Still very watchable after all these years. We also watched Coppola’s The Conversation, a psychological thriller about a paranoid wiretapper (Gene Hackman) who at the end goes crazy when he is put under surveillance. Good character study if a bit slow.

Apart from that, am getting more emails from friends and colleagues recently, which is most appreciated. The Contact me button is proving popular!

Other than that, just continuing my regular routine of walking, eating, and building up strength. 2 more weeks to the 3 month mark!

Week 9: A Bump in the Road

It has been a rather mixed week. Thanksgiving weekend, while it was nice having my brothers and son with us, was matched by my nausea, not able to eat much, having a fever, and consequently feeling very weak, without my usual energy.

At the clinic Tuesday, they did a bit more blood work. All my counts were good apart from my kidney counts (creatinine too high), blood cultures (negative) and gave some practical suggestions on how to get my food and energy levels up (salty beef broth being the miracle drug, along with Entocort a steroid that helps the stomach deal with GvHD, as they expect I have a mild case).

Other things they are watching out is for a liver reaction with is common around the 2 month mark – so far no evidence. And they hope that I can get away with only taking Encotort, rather than Prednizone, a steroid that affects other parts of the body than the stomach.

And then, less than 24 hours later, I largely bounced back (the miracle broth), was eating better and more, and my energy picked up enough for walks. Quite remarkable and quite a relief.

I have also started drinking energy drinks (Boost, not the Red Bull variety) to give me another 700 calories a day, which brings me up to my normal intake.

On Friday, I was back at the clinic and they also marvelled at my recovery. The nurse gave me some further advice on how to increase my protein and calorie intake, including which starches digest quickly for quick energy (e.g., pasta potatoes) and which have more lastly power (bread). My dietary mix is getting better and my stomach seems to be able to handle it – more meat, more pasta, tabouleh, tofu pudding etc. Progress.

As one of the side effects of the Tacro is hands shaking and the reaction in my stomach, they slightly lowered my Tacro dose in the evening (.5 mg from the 1 mg previously, it stays at 1 mg in the mornings). Later that evening my rash got worse and the itching came back so will need to see if this settles in a few days or whether I need to go back to my previous does (it seems to be). Amazing how quick the reaction. And on Saturday I forgot to take my mid-day dosage of Encotort with another immediate effect of heartburn and shivers. I learned my lesson!

I have been cleared to start driving, albeit for short distances. Another bit of progress.

So a bit of a roller coaster week – I was having things too easy and expect that the next few weeks, if not hitting a brick wall, may have these ups and downs as they adjust doses and my body continues to adjust accordingly. Part of the journey.

In terms of movies, we watched When We Leave, a film about a Turkish woman who leaves her abusive husband in Turkey with her son to go back to her family in Germany and whose family’s code of honours means they cannot accept her separation, keeping the child and living on her own. Although she makes repeated efforts to reconcile (excessively and futilely so), she never does as the family ‘honour’ is too strong. Interesting insight, and while some elements are a bit unbelievable (the wedding scene is over the top), worth seeing.

We also watched L’Amour fou, a film about Yves Saint-Laurent, his long-term lover and business partner Pierre Bergé, their incredible collection of art and objets d’art, and the life and times during which Saint-Laurent worked. Captivating, as a ‘bio-pic’, as a film about the Époque, and as a story itself.

I installed iOS 5 this week (once I could get through Apple’s servers), including iCloud. Now all are devices are synchronized across calendars, to-dos, contacts etc, so more updating from one device to another. As the ad says, ‘it just works’ and takes out one of the little hassles of today’s gadgets and modern life.

With all these ups and downs, it is harder to predict the week ahead but hopefully things with stabilize more (just like my appetite and digestion) that will allow me to continue on a more linear path. However, I always new – and the team reminded me – that there will be some ups and downs and these are to be expected. So no real choice but to plow through, happy that I am down to the last 3 weeks to make it to the 3 month mark.

Week 8: Largely on the Right Track

While overall it has been another slow but steady recovery week, with lots of walks, experimenting with broadening the variety of food has been less successful. The last few days, around dinner time, I have also had nausea, which is new, which I hope is the after effects of some of my new foods, and will dissipate. Makes it hard to eat closer to normal quantities, but hopefully ‘this too shall pass’. The medical team did warn me there would be a few ups and downs, and I was overdue for a down, fortunately a mild one.

On the good news side, my regular clinic visit went well and they are pleased with my overall progress, with my blood counts ‘perfect’ (for someone post-transplant). My rash is stable (although an interesting difference of opinion between the liaison nurse who was much more relaxed that the doctor who is starting to look for signs that it is diminishing and wants me to continue using the cream.

Some other points we discussed:

  • I noted some brown spots on my face and asked whether they were of concern. Potentially yes, so I need to watch for any change in colour, size or shape, and need to use sunscreen all the time, even in winter, ‘for the rest of my life’. No more beach holidays :)
  • I asked whether we could travel to Toronto in mid-November for our son’s birthday. Two opinions: the liaison nurse urging caution, the doctor saying as long as we don’t stay in a Super 8 and eat at Harvey’s! We will go with the more cautious approach.
  • As per last time, all family members need to get flu shots to ‘cocoon’ me (will not make any difference for me this year.
  • I also asked about when the immunosuppressant (Tacrolimus) will stop and when the Hickman can be removed (largely an insurance policy in case I need to be hospitalized – it has not been used for a month. They said we will start having this discussion at the 3 month mark, and will depend on how I am doing at that time. Getting off them will be another milestone as that will allow me to build up to normal immunity.
  • And lastly, I have started using email to flag any changes that I am concerned about to the liaison nurse. I asked her whether this made her life easier and she said yes, she can then print it and stick it on the file and will reply by email when hospital policies allow (some things can only be done in person or over the phone)
I am following some issues at work a bit more, trying to find the balance between getting involved and just letting the team run with things. Only they know whether I am achieving this!

Not many movies as my son and brothers are up for the Thanksgiving weekend (not only the one from Toronto who comes up regularly but my other brother who flew in from Mexico). It is really nice for all of us to be together and be well enough to enjoy it, even if I cannot fully partake of the food. We did, however, watch Amélie again, a wonderfully quirky and clever French movie – if you haven’t seen it, well worth seeing.

I am slowly wading through David Landes’ The Wealth and Poverty of Nations, exploring why some societies are rich and others not. Enjoyable and interesting but a bit heavy going – the link connects to a review which lists some of the weaknesses of his arguments but not the value of the book.

One of my faithful readers pointed out to me after my comments on my surprise that I was not getting more messages from colleagues by pointing out it was hard to figure out how to send private messages, for those not comfortable with using the public comments function. So I have added a button ‘Contact me’ top right to give people another option.

I also received confirmation that my CPP-Disability application was approved (application required for my private long-term disability insurance which had been approved a few months ago). Good management of expectations; normal period of adjudication is listed as three months, mine came through in a month.

So hopefully the nausea will clear up and I will be able to eat more and start to build up my weight a bit over the next week and otherwise continue my recovery.

And four more weeks to the 3 month mark!

Happy Thanksgiving all!

Week 6: Continuing on the Same Track

Another slow and steady recovery week. Boring is good!

The two issues I have been dealing with this week are a rash and kidney stress.

The former had me back at the clinic this Friday (after Tuesday’s visit) to ensure it was not getting worse. It is not, and they have given me some cream to alleviate itchiness. Overall, more an irritation than anything else, and the feeling of the team is that it is more chronic than acute, a good signal that my body and my donor are coming to terms with each other in the desired manner. This could of course change but so far, so good.

Given all that has happened to me, some kidney stress is normal, but they were also worried about high levels of creatinine not improving. After ‘threatening’ me with coming into the hospital for dehydration, and admonishing me to drink more (already at more than 2 litres per day), fortunately my count showed an improvement Friday. So this means, a free weekend and no time at the hospital. A gift!

We had two separate and funny discussions on nutrition. Tuesday’s doctor encouraged me to branch out a bit, so I did. A bit too far (although having new tastes was wonderful), as my stomach told me to back off (great feedback mechanism). Friday’s doctor emphasized calories and fluids more important than protein these days, so I have my marching orders. So I am upping both, being a bit but not too adventurous. As I try ‘new’ foods, the intensity of taste is refreshing after 6 or more weeks of blandness, even carrots have more flavour than I ever remember!

My other side effects continue to dissipate and are a bit less aggravating. Again, overall, I am doing very well according to the team, and just need to keep in the same direction.

I asked about how much can I push myself in lengthening my walks, given the team’s earlier admonitions. Some very good practical advice. Essentially if I can’t get out of bed the next day, I have pushed myself too far! But given that I am doing three 20 minute walks per day, I am free to try some longer walks. Given the wonderful fall weather this year, again that is a gift that makes a difference. But pacing remains important.

Emotionally, I have been feeling, if not depressed, without my usual bounce and enthusiasm, a bit world-weary and listless. I get on a regular basis a questionnaire that poses attitude and related questions, which confirm this. This is not that I am not optimistic about getting through this – I am, but rather a sense of dragging my feet and forcing myself more to do things, rather than just enjoying. Much harder than last time on the emotional level.

I asked the BMT liaison nurse (who is wonderful) whether this was normal and whether this was the transplant, the drugs, or a combination. She said three factors are at play:

  • the transplant itself, which takes a lot out of me, including my accommodation with my donor
  • One of my drugs, Tacrolimus, combined with some of the other drugs, which decreases my testosterone level
  • And the stress on my kidneys, which adds to both effects.
So not unexpected, and something that should correct itself once I come off Tacrolimus and some the related drugs, which could happen at the three-month mark or so. And in the broader scheme of things, not that big a deal, and one that I can contextualize in a ‘this too shall pass’ moment, albeit more lengthy than I would like.

Psychologically, it starts to shift my frame of reference from 6 weeks post transplant to another 6 weeks or so to making it past the 3 month mark and hopefully marking another transition. So every week getting there becomes another mini-milestone.

The team has also asked me for some feedback on the care and process. I focussed on three points:
  • Really impressed and appreciative of the quality and warmth of the nursing staff. A wide range of personal styles, as is normal (and which makes life interesting), but I really felt well cared for, not just as a patient but as a person
  • Rather than giving just oral instructions upon discharge, a short written summary would help, given the amount of information to absorb and that a number of times, my ability to focus was less than normal. I don’t think I missed anything but other patients may also have similar issues. She noted this is under consideration for these reasons.
  • While the overall process of ‘conditioning’ me psychologically and emotionally for the transplant worked well, in particular the separate last long sessions with the head of the clinic and with her, the clumsy intervention by the intern following my discussion (where he essentially went over the basic risks for yet another time, just when I was ready and psyched up to go ahead, making me and my wife feel like lead balloons) needed to be rethought. Both the head of the clinic and the liaison nurse understood exactly my point, and the nurse noted that normally they do not let interns intervene at that stage, as they do things by the book, rather than with the experience of dealing with people which comes with time.

I have been reading S.C. Gwynne’s Empire of the Summer Moon, the history of the Indian settler wars in Texas, largely with the Comanches. A reminder just how brutal (on both sides) life was back then, and just how the relentless pressure of settlers was, and nomadic groups, like the Comanches, dependent on Buffalo herds, in the end, despite their successful early resistance, had no chance. The extent of violence – the Comanches were raiders by nature, and outstanding warriors, with torture and killing common – was of course matched by the Texas Rangers and the overall push of the Comanches off their land. Likely some echoes in Texan culture today.

We have also been watching some old Paul Newman movies, Cool Hand Luke, a story of life on a Southern U.S. chain gang, and Sweet Bird of Youth, A Tennessee Williams’ play involving separate plots of a corrupt governor, an aging Hollywood actress, and Paul Newman as the link, playing her driver, handler and more, who comes back to see the governor’s daughter, his old sweetheart. Both worth seeing.

Still living a relative hermit-like existence but as my counts are relatively strong, may be able to gradually relax this a bit but prefer for the moment to err on the side of caution. So phone calls and emails have to do the trick.

Next week should hopefully be another stay the course week, with me trying some longer walks and continue to build up my strength.

Week 2: Back to the Brick Wall

Well, Week 2 recalled both my metaphors: the roller coaster, reminding me that things can change quickly, and the brick wall, which I hit hard after the comparative easiness of Week 1.

Essentially, mucositis caught up with me early in the week. Lots of mouth pain but more critical, sharper swallowing pain. One of the normal side effects of the chemo/radiation combo, but in my hope (vanity?) I thought I might avoid it. Nothing much that one can do about it, apart from continuing to rinse every hour or so (salt or soda water), gratefully accept the painkillers offered by the hospital, and some other changes to ease the pain for the week or so that this lasts.

Has given me a bit of the Godfather jowls, with even my hoarse voice contributing to the effect. Speaking is also painful so not very talkative these days. But the Godfather look is dissipated by having lost what little hair I had left!

Mid-week, the inevitable happened: high fever. Made it to Day 12 (medical team impressed I had made it that far, or they just were being nice!), before checking in on Wednesday to the hospital. I will be here for about a week to 10 days for more antibiotics and greater control. Blood culture tests revealed a blood infection (bacteria from the gut, a side effect of mucositis), one fortunately that is covered by the antibiotics I am taking. Once my counts are up (by Day 21), should be back home.

Sunset from my Room

Eating is more of a challenge. My medical team’s dietician is a strict taskmaster, trying to convince me to develop a ‘taste’ for the various supplements. A bit overly so. However, by eating soft foods (soups, purees, yoghurt, plus some neutral protein supplement mixed in), was able to stay on a relatively ‘normal’ (under the circumstances) diet. Eating is drawn out, as a break between each swallow helps things go down.

Fortunate that I am not dependent on hospital food (if the chemo doesn’t kill you, the food will!) and am forever grateful to my wife bringing me food from home and sparing me that.

While I had hoped to be thankful for small mercies with the end of my diarrhea this week, by the end of the week it had returned (a side effect of the heavy antibiotics). Oh well, this too shall pass!

At the same time, have been blocked up with a dry cough. Has been slowly dissipating over the past day or so, but contributes to the general crumminess feeling. And the combination of drug induced fatigue and a sore throat makes me a poor conversation partner; it really is a good veg out time. I had a chest x-ray to make sure it was not serious; it wasn’t, but my body let me know it had not forgotten my last bout of radiation by having me promptly throw up. Next time they suggest an x-ray ….

So it is back to the hospital routine, where I am well looked after, under close supervision, and hoping to keep things stable until my counts come back. But as I am in isolation, do get a bit stir crazy but (fortunately? unfortunately?) not feeling good enough for that to become a real issue.

I was going through my medication list the other day, which continue to gets refined as they adjust the dosage. Never taken so many pills before in my life:

  • Tacrolimus: 2 pills (1 mg and 0.5mg) twice per day, adjusted occasionally depending on level, (immunosuppressant)
  • Famvir: 1 pill 3 times per day (anti-viral – helps with mucositis)
  • Pantobloc: 1 pill once per day (heartburn)
  • Fluconazole: 4 pills once per day, morning (anti-fungal)
  • Dilaudid: 1-2 pills every 4 hours plus patch or as needed (pain)

Did have a chance to ask about the procedure should we wish to know the identity of the donor. In Canada, the waiting period is one year (by that time, the success or not is reasonably well established). Only other details I have is that it was a healthy young male and by inference, must be Canadian (other countries have different waiting periods).

Have not had the energy level to read books or watch movies given the drug and other induced drowsiness. Somebody did comment that I was a bit unfair to merely call Potiche dated as it was more significant for the Époque than I let on (and one could argue that the DSK affair shows things far from ideal in today’s France!). Do scan a lot of newspapers and on-line sites (Zite, Flipboard, Twitter, etc) as they are perfect for my attention span these days.

On the good news side, have the first sign that the transplant is working and engraftment taking place. My white blood cell (WBC) count moved from ‘not countable’ to 0.1, meaning the process has started. As the counts increase, all of my current side effects should decrease and the worst – for this stage – may be over. Not sure how quick this will be as they do not prescribe Neupogen to accelerate WBC production. Again, this is to maintain the delicate balance between any remainder of my existing immune system and my new incoming system.

So with any luck should start to feel better Week 3 and return to out-patient status, feeling strong enough to start walking again. And then can start worrying about GvHD.

As always, just taking it day-by-day, week-by-week, appreciating every small bit of progress.