Finding A Match

What's in a number?  On Monday, I turned 60 and on Tuesday I found out that my donor team found 65 potential full matches. It was a day late, but I'll take it as a belated birthday present, thank you very much. I'm not sure how :good" 65 is, but it's a lot more than I expected. When I met with Dr. Soiffer two weeks ago, I remember asking about the likelihood of finding a donor match from the registry. The way I remember his answer is this: If we find seven matches, it's a good chance one of those will work out; but if we only find one, then it's not that likely. So I'm thinking 65 is a good number. 

Regardless of whether it's good (i.e. large) 65 is a pretty amazing number. Maybe it shouldn't be that surprising to find 65 donors when the Dana-Farber donor services team looks through more than 100 different registries in 45 countries. But it seems remarkable nonetheless.

What's been more remarkable to me is the number of people who have reached out -- friends, colleagues, cousins, nephews and nieces, and of course, siblings -- to volunteer their stem cells, to let me know they are already part of Be The Match registry, or to join the registry. I know I'm not asking for someone's kidney, but I'm both amazed at and grateful for people's selflessness. Even if I can't use my friends' stem cells, maybe their joining the registry will save someone else's life down the road.  If you are the least bit curious, I'd encourage you to learn more at Be The Match. 

My brother is also getting HLA typed and there is a one in four chance he will be a match, too. And if he is, then we'll have to determine which is the best option for me. I have to admit that my understanding of the whole HLA typing and matching process is very limited, but it's a question of how many HLA markers (ideally 8-10, I understand) match between me and my prospective donor. (This video from Be the Match is a pretty good explanation.)

All of this means that for now, we seem to be still on target for a late January transplant time frame. We'll know more in a couple weeks. In the meantime, I'm feeling great. I had been making good progress extending my runs and as you may know,  running has always been a good proxy for how I'm feeling. It'  something I've written about many times on this blog over the years, including here (in 2015)  here (way back in 2012!) and here (back in 2014). So that I could "extend" my distance to just shy of 2.5 miles last weekend (even with a sore calf all the way through) was a good sign. 

I'm likely taking a few weeks off running, though, due to the calf injury - not lymphoma related, just an ongoing issue I've had for years. But hoping we'll still get a couple runs in before transplant begins.

A Little Patience

I've been having a hard time finding the motivation to write a new post. And to be honest, I'm not sure why. I think it's because I'm in a bit of limbo right now. We met with Dr. Soiffer's team last Wednesday and we're really just waiting now. 

That seems to be a constant in this topsy turvy world of cancer. Since diagnosis, waiting has been a constant part of the equation. At first, it was the watching and waiting -- monitoring the lymphoma and waiting until it was time to treat it -- and then throughout this whole journey, there's always the waiting for scan results to see if the cancer was growing. And now, we're waiting for a stem cell donor. It's enough to try someone's patience.

Unfortunately, those who know me well would probably agree that patience is not one of my virtues. But that's where we are. 

Waiting to find a donor. Waiting to test a donor. Waiting to get more tests scheduled. (I'm told we'll do a re-staging (i.e, a PET/CT scan) but will not have to do another bone marrow biopsy, which is good.) Waiting to get dates on the calendar. Waiting to get it all started. Waiting to see how I feel when we get it started. Waiting to see how we will cope with the isolation and the infection prevention measures. A lot of waiting. 

Right now, the hope is to get the transplant started by the end of January. But until then, there's not much more to do, but wait. 

A Funny Thing Happened on the Way to the Transplant

Followers of this blog would know, if they checked their calendar, that in about two days time, my Autologous Stem Cell Transplant was set to begin. Monday the 21st I was scheduled to get my port and begin collecting my own stem cells on the 22nd. That is not going to happen. But we have a new plan. We meet next week with the Allogenic Stem Cell Transplant team and begin planning for that. 

Why the Change in Plans?  

Among the many tests I underwent in late October was a bone marrow biopsy to check to make sure there was no disease in my bone marrow. Good news: there was not. But they also do a test known as a Rapid Heme Panel, a test developed at Dana-Farber and Brigham and Women's Hospital almost ten years ago. Using the Rapid Heme Panel, we were able to screen my bone marrow sample looking for genetic mutations. They found some, including two mutations that could lead to problems down the road with my bone marrow - problems that I'd like to avoid, like leukemia. Now, just having the mutations, particularly at the relatively low percentage that they were found, doesn't mean that I'm headed for leukemia. But it does mean that if the stem cells continue to accumulate these mutations, it will certainly increase the risk of bone marrow issues down the road. 

So now we return to the difference between autologous SCT and allogenic. In an autologous SCT, we would use my own, already damaged stem cells, which would be removed from my body and re-infused after high-dose chemo was done to rid by body of any lingering cancer cells. The question I often got when people asked about the transplant was: Do they do anything with your stem cells before they re-infuse them? And the answer is: no. Short of freezing them and then thawing them to be re-infused, they don't do any "treatment" on the stem cells. Not these days anyway. 

So if you're following along, you might see where this is going. If we went forward with an auto SCT, the cells that would be re-infused in me would be my own genetically damaged stem cells, which would likely create more damaged stem cells and increase the risk of bone marrow issues in the future. 

In an allogenic stem cell transplant, however,  I would be using a donor's healthy stem cells to replace my own. That is now our plan.  

Good News or Bad?

The new favorite question these days is: Is this good news or bad? I'd be lying if I said I wasn't a bit panicked when we found out the news on Monday. Allogenic transplant is a more involved process - isolation is more like 100 days instead of 30, and the infection precautions last longer, too. There's also risk of graft versus host disease. But the upside is that the possibility of a cure - of both the aggressive lymphoma and the original follicular lymphoma -- is potentially greater. 

What's also important to consider is that if we didn't do this test -- and it wasn't even around when I was first diagnosed 11.5 years ago -- we would have gone through the whole auto SCT process for it likely not to have worked. And that would have been devastating. 

One of the biggest challenges is that I had been getting my arms around the idea of the transplant; I had been preparing for it mentally; getting my life ready for the 2-3 months of procedure and recovery. I was ready to get it going and get on the other side of the process. 

Now that's all on hold and I'm back in planning mode. I'm not sure how soon it will start but I doubt it will be for a couple months as we need to identify a donor among other things. I hope to know more when I meet with my Allo SCT team on Wednesdays. In the meantime, the boys are coming home from college starting tomorrow, and instead of having chemo by myself for Thanksgiving, I'll be having turkey with all the trimmings with my family. That's pretty good news for now.

 

--michael 

Ps -  If you're interested in being a stem cell donor, not necessarily for me, but in general, you can learn more at Be the Match.

 

Testing 1, 2, 3, 4...

Echocardiogram, EEG, Lung volume study, Chest X-ray, 14 vials of blood and a PET/CT scan. That was last Thursday. It was a lonnnnnng day but a necessary one. And most importantly, all results look good with the PET/CT scans remaining clear.  Or as the report reads: "No evidence of FDG avid lymphoma." It wasn't as exciting as the scans from five weeks ago because we kinda expected this, didn't we? But clear scans are clear scans are clear scans.

Friday was the bone marrow biopsy - not as scary as it sounds but I'm not lining up to do it again anytime soon. We won't get official results for a week or two, but at this point, we are not expecting to find anything that would prevent us from going forward with a Stem Cell Transplant.

Why do a stem cell transplant?

I feel great and all indications are that I am free of lymphoma. And so the question that I hear most from friends is something like: If you are cancer free why do a stem cell transplant? Well, what you can see at the imaging level is not the same as what might be lurking at the cellular level. Lymphoma is a cancer of the blood; it doesn't originate in any one part of the body like, say breast cancer or prostate cancer. It's not really clear where it originates, and so while it seems like I'm cancer free, there could be cancer cells lurking undetected. So the whole stem cell transplant process is the best chance of getting rid of that, and putting the lymphoma into a long-term remission.

The prospect of doing a stem cell transplant was always an option, but there's an important set of events that brought it from the background to center stage. For 11 years, I've had follicular lymphoma, which is considered an indolent, or slow-growing lymphoma. So slow-growing that in 10-plus years, we treated it with chemo/immunotherapy only twice. We would generally start talking about treatment options when scans would show lymph node/tumors growing past 3 cm. That would take years. 

What happened is that some time in 2022 my indolent lymphoma transformed into diffuse large b-cell lymphoma (DLBCL) with a little bit of double-hit lymphoma.  DLBCL is not indolent. No, no, no. It's aggressive. And fast growing. In about six or seven months since my scan in late 2021, my little tumors had become "bulky" with an accumulation of masses measuring 17 cm. 

Aggressive lymphomas tend to also respond well to treatment, as evidenced by the response to the four rounds of R-CHOP. So now the goal is to knock out the aggressive lymphoma and either return to the good ole days of follicular lymphoma, or maybe cure the follicular too, while we're at it.

What is the SCT process like?

So the R-CHOP is done. The testing is done. Now we wait. And, no, that's not the hardest part, although I do wish we could start tomorrow and get it going. I think the actual process will be a little tougher than the waiting. We start with getting a port placed in an out-patient procedure. That's followed by stem cell collection - also an out-patient  process similar to dialysis or platelet donation (the latter of which I used to do before I was diagnosed). When we have enough stem cells collected (2 million at least), they freeze them.  

From there, I'm admitted to the hospital for six days of high-dose chemo. Then my stem cells are reinfused back into me (after they've been thawed, thank you) and we wait for my blood cell counts to recover. In total, I should be in the hospital for about three weeks. Assuming I feel well enough, visitors are permitted in the hospital (as long as they are gloved and masked). 

Once I'm discharged from the hospital, recovery at home is a long process. For the first two weeks at least, I'm still on a neutropenic diet. That means I can't eat anything that we don't prepare at home. Nothing from restaurants or anyone else's kitchen. No GrubHub. No neighborly casseroles. It's all processed food and stuff we cook here. And for about 2-3 months, life in the bubble continues:  no visitors, avoiding stores, crowds and people in general. 

That's the plan. My hope is to do a daily blog post once the whole process starts -- even if that's just a quick sentence or two. But there's still three weeks to go before we get to that point.

It's All Relative

 I'm always amazed at how quick my mind feels on good days. Chemo and its after effects can cast a mostly opaque film over my mental state. And when that veil is lifted, there's a crispness of thought, a boost of mental energy. It's a great feeling like when you wake up clear headed after being dragged down by cold symptoms for a week.

For both round 3 and round 4, I had  figured out how to keep any nausea at bay until the danger has been washed out to sea. The routine these past two cycles was pretty much the same. In the first few days following the chemo, I felt pretty much 100% -- or so I thought -- with the only issue being the occasional back and joint ache courtesy of the Neulasta, a white blood cell booster that is released into me 24 hours after chemo. In full disclosure, the back pain freaked me out when it came in round 2 given the history of where this whole thing began and I had a moment of panic that the lymphoma was fighting back. But that was before the clean scans. So when the back pain cropped up, I took a few acetaminophin and carried on.

By day 5, as the prednisone (steroids) end, I start to get a little fatigue and that carries through Sunday and Monday. But it's not routine altering fatigue - maybe I sleep a little longer, but I still get up, walk the dog, and go to work thinking all is fine.

Then I wake up Tuesday and realize that my legs don't hurt when I walk up the stairs; that conversations flow more smoothly; and thinking doesn't feel like I'm looking through a pair of filthy  glasses. If I never cleaned those glasses, I probably wouldn't even have known that my vision was clouded.

It's all relative.

That's the theme this week. Four weeks from Monday, if all goes well, I'll be getting my central line placed, followed by the collection of my stem cells. All that stands in the way now are a gazillion tests, including a PET/CT scan and a bone marrow biopsy this week. I don't think I can say with all honesty that I'm looking forward to the transplant, but I'm not fearing it the way I might have a year, or even a few months ago. For years I thought that I had avoided the harder of the chemo regimens. When I had Bendamustine-Rituxan back in 2012-2013, I was relieved that I didn't have to go through R-CHOP. But now having gone through four rounds of R-CHOP, it doesn't feel any worse than B-R. My hope is that my ability to tolerate an effective R-CHOP treatment is a predictor of my ability to tolerate the "conditioning" as they call the 6 days of in-patient chemo I'll get as part of the process.

Random photo of our dog, Rocco,
for no particular reason other than
 I don't like posting without any photos 

So much of anxiety is tied up in the unknown. On lymphoma Facebook groups, I always see questions from survivors about what to expect from this procedure or from this treatment. And one of the most reassuring notes I had during this treatment was from someone in one of those groups who had almost the identical disease transformation experience, and who shared her experience with R-CHOP. It demystified it, and between that and the experience of a round of treatment, it made subsequent rounds easy.

I think that's why my nurse spends so much time going over - repeatedly - the steps that are involved in the stem cell transplant process. Day by day, she's reviewed what it may be like and how we will get from here to there. She's not sugar coating it, but she reviews it with a sense of confidence, experience, and calmness. It makes me feel that while it may not be easy, my team will  be prepared to deal with whatever challenges come our way.  After all, as my nurse says, I'm young. But then, that too, is relative.

Can You Kick Cancer's Ass?

 I’ve always been somewhat reluctant to use phrases like kick cancer's ass. There’s an ongoing debate in cancer survivorship and cancer communications circles about whether “violent” terms like battling cancer and fighting cancer do more harm than good. It casts people as winners who "won their fight against cancer' and losers who "lost their battle to cancer" and well, there's a side that says that's bad.  But I haven't avoided those terms because I’m concerned about offending people. Hell, it’s my cancer, and I’ll choose the language I want to use to describe it. 

No, I'm not worried about being on the wrong side of the debate, it’s just that I’ve never felt like I was doing much. I show up at appointments and people do things to me. They examine me; draw my blood; scan my body; discuss options; give me noxious chemotherapy; give me more drugs to counteract the side effects of the chemotherapy. And all along I’m just an innocent bystander except that I’m not a bystander. I'm in the middle of the crime scene, but I’m not doing anything. I’m just there being done to.

Finishing up round 4.
(Tony, Beth - notice the shirt)

Maybe part of it is because for the first 10 nearly 11 years of my Cancer “ journey" -- a word that I'm not too fond of --  there was little evidence of any fight. With the exception of that one course of chemo therapy in 2012/2013 -- and even through that, I had no outward symptoms,  and unless you were living in my house, you could have no clue that I was going through cancer unless you really probed.

I think another part of it is superstition. I've rooted on too many sports teams and watched too many games to know that you don't celebrate too early. You don't get too cocky, especially against a strong competitor. 

But now as I’ve gone through this much more serious bout, the imagery is ramping up. Hell, I even mistakenly typed battle instead of bout in the previous sentence at first. It seems unavoidable.

The thing is, as great as the scans were three weeks ago (see scans on this post), and as optimistic as I am that having finished round four today, the scans will remain clear in two weeks, I don’t really feel like I’m kicking cancer's ass. I feel like cancer is beating up on me and I’m just doing a good job of absorbing the blows.

I don’t want people to take that negatively, Or feel like they have to avoid saying things like "keep fighting" or "fuck cancer" or "kick cancer's ass" even.  But the truth is, there is a certain amount of helplessness that comes with any disease. You do what you can, you make smart choices, you try to stay mentally resilient, you lean on your friends and family, and you put your faith in the care of your care team. Thankfully, my care team at Dana-Farber is the best in the world.

--Michael

Prep Mode

 We are in full prep mode for the upcoming Stem Cell Transplant. It's a weird time.

SCT is no picnic. It's a port placed in your body; 5-6 days (I forget) of high-dose chemo and a total of about 3 weeks in the hospital, followed by an isolation period of recovery at home. 

On the other hand, SCT is an option because my scans showed No Evidence of Disease. And that's undeniably good news. 

So it's the same old choice: what do you focus on: the hard path ahead or the good news? 

Seems like an easy choice. But there's so much prep to deal with for the procedure that it's difficult not to tune into those details. The information binder is huge -- chapters of information. And living 50+ miles away from the hospital makes it more complicated. I'm scheduled right now to get my port placed on 11/21 and begin harvesting my stem cells on the 22nd, with admission to the hospital late on the 23rd. But I might need to harvest again on the 23rd, and we won'd know until late on the 22nd.  So complications, right. 

And because I'm going to be out of work for an extended time, I need to file paperwork for a leave of absence and set up accounts and all that crap. More complications. 

Doing a little work as Round 3
chemo finishes up

And there's a whole lot of appointments that I've got to do - lung, heart, blood work, final PET scan, etc. etc. that are being coordinated. And so, yes, more complications. 

We took care of all of that stuff late last week, but the taking care of made it hard not to focus on what lies ahead.

That said, let's remember this: I've got three out of four R-CHOP procedures in the bank. I've tolerated it well. I am in no pain. I have No Evidence of Disease. And after my last R-CHOP on October 11, I'll be looking at a potential period of about five good weeks before SCT.  And I'll be entering SCT in pretty good shape. 

True, instead of Thanksgiving Dinner, I'll be served up a dish of chemotherapy. But as my wise sister reminded me, "One Thanksgiving in the hospital for many more out of it." That's the attitude to take. 

  

No Evidence of Disease

You know it's good news when the doctor walks into the exam room and says excitedly, "Did you see the scans?"

Further proof of good news is when the doctor uses terms like, "Amazing" and "Awesome." And further proof is when the oncologists tell you they were celebrating in the back room.

Yesterday's PET scans after two rounds of chemo revealed no evidence of disease. If you didn't get the point: this is very good news. Of course, just because you can't see it on scans, doesn't mean there aren't the stray cancer cells lurking undetected. So we will continue with two more rounds of chemo (well, now one round after today's treatment) and then on to stem cell transplant (SCT).   

To be honest, I was approaching the scan results with an optimistic win-win approach. I knew that there would be some remission -- I felt too good for it not to be working -- and so my thinking was if it's Partial Remission is good and means we go CAR T and that's potentially easier than stem cell transplant; if on the other hand it was full remission, well that would be good because it's full remission.

But the truth is, it wasn't "win-win'. It was more like "win-do pretty well." And full remission was always the win. The fact that all my lymphoma responded so well to two rounds of R-Chop bodes well for future rounds and for SCT. Nothing, of course, is guaranteed, and SCT is no picnic, but I'm more hopeful that we can put this in the rear view window soon enough.

------

A picture is worth a thousand words, so here's a before (on the right) and after (on the left) picture of PET scans from August (pre-treatment) and yesterday.  

 

The following is from this page on Mayo Clinic's site

"The PET scan uses a radioactive drug (tracer) to show both normal and abnormal metabolic activity.he tracer is most often injected into a vein within your hand or arm. The tracer will then collect into areas of your body that have higher levels of metabolic or biochemical activity, which often pinpoints the location of the disease.  Cancer cells show up as bright spots on PET scans because they have a higher metabolic rate than do normal cells."

Note that in the black-and-white images, the "bright spots" are black. So black = tumors = bad. Note that the brain and kidneys and bladder also show up as black because, I think, they have high activity. But that giant mass in the middle is now gone. There's still some "stuff" - my words - around the neck, reduced but visible, but the interpretation is that this could be/is probably brown fat and not residual disease. Again, do you see the giant accumulation of lymph nodes/tumors in the middle? That's gone.   

Choosing Your Path

 Today was a good day. 

That's the thought that was roaming around my head on Saturday. (Today was pretty good too but more on that later).  In the world of positive encouragement that you often run into in cancer survivorship, it's hard to find something more universal than the mantra: live in the present. It comes in various flavors, the most popular being the notion that you can't control the future, so live in the moment, enjoy it and don't worry about the what ifs. A corollary to that is that a silver lining to a cancer diagnosis is that it makes you  appreciate the now, more than ever. 

Well, I don't know about that. There's some truth to the cliche, I suppose, but I always felt it to be more cliche than truth. To be honest, that's probably because living in the moment has never been my strength. My mind is almost always going -- which makes for wonderful insomnia at times -- and my anxiety gene is a well-honed one. The combination of the two means thinking about the future and the dreaded "what if" is an easy state to drift into. 

But Saturday really was a good day. I mowed the lawn, caught up on some work in anticipation of some tired days ahead, and had an all around normal day on the homestead. For the record, I crashed a bit on Sunday and Monday, but by Tuesday night, I was feeling good enough to start this blog post. That it took me to Thursday night to post it has nothing to do with chemo effects. And by Wednesday, I was back full day at work, I'll take it. 

Yet when I'm having a good day, I sometimes feel that I need to literally remind myself of that, just to keep me on that positive path, and more importantly, to avoid traveling down that other road that darkness and solitude often invites. That particular path is overgrown with weeds and worries; it's a dark and often scary jungle and it leads nowhere.     

It may be hard at times, but I do  think you can choose which path you want to follow. And I'm going to stay on that positive path as often as I can. 

Backyard blogging on a beautiful September
day, with cameo appearance from Rocco

So here we are, halfway between rounds two and three of R-Chop. Based on pathology of my disease, it seems like CAR T-Cell may end up being the prescribed treatment approach. We'll know more after we do PET/CT scans on the 19th, before round three. And yes, I can feel the seeds of scanxiety starting to take root. The battle I fight (and will fight) in my head is to not think about "Will it work? What do we do if it doesn't?" but instead focus on where we are today.

As I sit out here on a beautiful late summer day, I'm managing the side effects okay of treatment and am pretty much pain free with no medications helping me along. And in a week and a half, I expect to be visiting Noah at Lehigh for Family Weekend. 

I like that path.

 

Round Two: New Attitude, New Hairstyle

 As I near the start of my second round of r-chop, it's hard to believe that round one was less than three weeks ago. On the day before my first infusion, I had to page my oncologist for some stronger narcotic painkillers. The walk from the waiting room to the exam room on that Tuesday was more a shuffle than a walk. And I had no idea when I would start to feel better. After a long fe weeks, it felt like I was at the bottom of a very steep hill, with little energy and no view of the crest. 

Today, I went out for my second run of the week. Granted, it's about two minutes off my normal pace and less than half the distance, but I'll take it. I worked the full week, at full strength; went out to dinner for Matt's 21st birthday (outside, of course); and, I've got a new haircut to boot, as my hair started to clump out last Wednesday, as somewhat expected. I'm on no meds to speak of and looking forward to getting round two in the books.

Less than three weeks. 

It's good to keep that in mind as I head into subsequent treatments, be it r-chop or whatever comes ahead. That may be an autologous stem cell transplant (some good background info on transplants here) if the r-chop achieves full remission; or it may be Car-T cell Therapy if we only see partial remission. Car-T is a relatively new and exciting treatment option (more on that here.) 

Time will tell which option is the path forward. We'll do scans after round three. Until then, there's nothing to do but wait and see... and remember that a lot can happen in a few weeks. 

I Can Do This

We bought a couch yesterday. 

That's about as exciting as a 2010 Facebook post, but it's what passes for excitement these days. In all seriousness, the search for a sofa was newsworthy for a number of reasons. For one, our current couch is well past its prime and is a bit of a torture chamber for your back on a good day. More importantly, shopping is not something I tolerate well on a good day; so the fact that I would willingly spend two hours in a furniture store (masked, of course) less than two weeks post infusion is a lot more than just a good sign. It followed a series of milestones whose sum total was an affirmation that I can do this. 

There were some bumps in the road, for sure, as I managed through side effects. The mile nausea, general fatigue, and an annoying dulled sense of taste were at their peak in days 5-9 after infusion; but the biggest challenge for me was not knowing how and when I'd rebound. 

But on Day 10, I worked a full day of work; I took my dog on an afternoon walk; and for the first time in more than a month, I had no back pain without help from medications. And since Day 10, I've only felt better each day. My energy is good and food tastes like food again..

I know there will be ups and downs as I go through the R-CHOP treatment, but these were major milestones for me on my road back. And as great as it is to feel better, for me what's just as important is knowing about what to expect. In the weeks leading up to the diagnosis and the start of the treatment plan, the uncertainty was as debilitating as the physical pain. I dreaded evenings, because what lie ahead was a sleepless and usually painful night, with what felt like no promise of relief. Even as I entered the hospital and we began to put together a plan, every day felt like the same - manage the pain, do some tests, kill a whole lot of time. 

Without perceivable progress, the monotony of recovery is brutal. You can find yourself searching for a reason to get up the next morning. And when I reached my darkest moments, what got me through (beyond the moral support of my family) was finding one thing to look forward to the next day -- some times that was as a simple as phone call with a friend, or even a work meeting (you know things are tough when you're looking forward to a Zoom meeting.) Having that one thing on my mental calendar gave me something to build on. 

Now, as I head into week three, I've got plenty of things to look forward to, including a full week of work, a dinner out, maybe even a short run. And, of course, a brand new, much more comfortable couch.

Enjoying couch shopping.
Yes, the pillows come with it.

 

 

 

The Need To Contribute

Cancer can be such a debilitating disease - both physically and emotionally. While a lot of the emotional pain comes from the anxiety of not knowing, and the fear of what will happen, what I've struggled most with these past few weeks is my inability to add anything to any part of my life - my family life, my work life -- anything. It's hard not to feel like a burden. 

I think we all, at some level, have a need to contribute to society. And among the things that define my society most are my family and my work. They are places I belong to and to which I hope I add value.  Both the sense of belonging and sense of value seem central to good mental health. And both have been noticeably missing from my life for the last few weeks.

At home we were preparing for Noah's first college departure and Matthew's return to college. And I've added nothing to that (even less than I usually do, because let's be honest, that's in Stacy's wheelhouse anyway). But even more, I've detracted from it. 

Meanwhile at work, my role has evolved over the last 15 years where I'm very involved in a lot of what goes on. And as we enter a real interesting and pivotal time in our department's evolution, I've felt like I was sitting on the sideline. It felt hard to keep up, let alone add anything, and it felt equally hard to feel like I belonged to the conversation. 

I have to stop now to insert that none of these feelings were anything perpetuated by anyone other than me. My family (see last post) has taken care of me night and day, and my team at work has been incredible - the care and support, and the "we've got this, you just rest and get better" attitude has been a tremendous lift. But being able to contribute helps my ego (in a good way, I think) and the last two days of being able to contribute to meetings, work product, conversations has been a huge bonus for me.  

We'll keep riding the good wave as long as we can -- some of the fatigue and nausea are starting to creep in already.  So I'll need to rest up when my body needs it, knowing that the rest period will just be a pause until I can contribute again.

From Agony to Gratitude

This will be the first time in several years in which I'll break the one-a-year blog post frequency.  While the cadence is an improvement, the reason driving it isn't great. My lymphoma came back with a vengeance these past few weeks. What started as what I thought was constipation, or gas, or back pain caused by a bad vacation house bed - turned out to be my follicular lymphoma transformed to a more aggressive form of lymphoma, which caused some excruciating pain for a about a week and a half, not to mention six days in the hospital, and a new round of treatment. 

I'll get to that. 

I had intended to write this in two parts: the story of the diagnosis and then the path ahead. But that was getting a bit too rant-ish. But with good reason - our healthcare system is screwed, and it cost me four extra days of agony because of it. I will never forget that and I will never go back to Rhode Island Hospital because of it. But I don't want to dwell on that; I will take that issue up with RI Hospital itself. But to waste my energy - and it's not in ample supply these days - is a bit as futile as road rage. I want to stay positive. It's who I am and how I like to be.  

Let's Start With Gratitude.

I have to start with my family: After coming home from vacation two days early, I was admitted on Noah's 18th birthday and came home the day after his off-to-college party. Stacy kept it all together - kept everyone fed, kept everyone sane, kept herself sane, kept me sane-ish. And the boys picked up the pieces. Their love and support and patience gives me strength. As did the support of my brother and sister - who called, texted, visited and listened, a lot. And my Aunt and Uncle and cousin with support from afar.

My care team. I've known for years that Dr. LaCasce and her team at Dana-Farber are world class. And this last week, they really showed it, along with their Brigham and Women's Hospital colleagues. From the triage in ER (and what a scene that was) to the ER treatment pod, to the oncology unit floor, there is a constant stream of compassion, kindness and competency. It is everywhere and in everyone. It may have taken a while to get a bed (the first night I stayed in a private room in the ER), but from early on, they treated the pain, got me as comfortable as possible, and worked toward a plan. 

Saturday afternoon, after news
 that I would be discharged Sunday.

I've been helped by so many people - Dr. LaCasce, PAs Katie and Linnea, Dr. Jacobson, countless nurses especially Maureen and Christine,  the nurse assistants, the amazing team in interventional radiology (I wish I had a picture of how they were able to take a needle biopsy of me while keeping me comfortable, with oxygen tubes and blankets and padding, and belts, and IVs, and blood pressure cuffs, all fitting in and out of the CT... ), the transport people, the food service staff -- so, so many people. And nothing but caring eyes and smiles all the way. 

And of course, my friends and colleagues - there are way too many to name here. But I've been moved to tears on more than one occasion by a warm note, text,  comment, or offer of support. It made me feel loved at a time I really needed it. 

So, What the Hell Happened

Follicular lymphoma is an indolent lymphoma. It slowly grows, you treat it; it grows again, you treat it. But sometimes the slow-growing lymphoma is essentially taken over by fast-growing lymphoma cells and the disease transforms into a more aggressive lymphoma. Why does that happen? I have no idea. But it typically happens in the first 3-6 years, so it's rare for it to happen after 11 years. 

I had been monitoring the growth as always, with a scan done November 2021. And while there was some small growth of lymph nodes - in the abdomen as always - it was not alarming. We would scan again in October and make some decisions, in keeping with the strategy of treating the lymphoma before the lymphoma started causing symptoms.

But somehow in the last couple months, the lymphoma transformed, most likely into a faster growing, more aggressive Diffuse Large B-Cell lymphoma. And suddenly the small lymph node growth was now not so small, with one group of growing nodes measuring something like 16 cm. That put a lot of pressure on my abdomen and back, thus the pain. 

And What's Next 

Relaxing in the shade,
 after coming home!

While we wait for confirmation from the biopsy done Friday, we will proceed with a treatment known as R-CHOP. I should know what all those letters stand for but the two important ones are R for Rituxan (a monoclonal antibody that I've been on twice before with good results), and P for prednisone, a powerful steroid that treats the pain and the lymphoma. (I've actually started the prednisone already which, along with some pain meds has made me comfortable.)

I'll start the infusion Tuesday and it's an all-day affair. I  repeat that every three weeks for six cycles (18 weeks). After we see how that works, we'll discuss next steps. The main side effects I understand are nausea, which is managed by some good anti-nausea meds, hair loss, which is managed by a razor, and fatigue. 

I'm in a decent enough place. I'm more than relieved to not be in pain and to be functioning and eager to start the R-CHOP to really create lymph node shrinkage. But I'd be lying to say I'm not a little anxious about the success and the steps beyond it. But as always, I'm trying to not think too far down the line. I'm home. I'm comfortable. I'm surround by my loving family (animals included), and I'm cared for by an amazing team. 

Hoping for the Best

I have a very simple New Year's Resolution this year. It's, of course, not the first time that I've taken to this blog for resolutions. Over the course of ten years of on and off blogging (mostly off these last few years), I've resolved to feed my mind, body and soul, and to be more accepting and have fun, among other things.

But first a little backstory. I am an optimist by nature -- territory I've also written about over the years. But theses past two years have tried the faith of even  the most eternal optimist. You may have noticed there's a pandemic out there that's killed millions, turned lives upside down, and tested the resilience of individual, family, and community. 

So on the one hand, you have the pandemic, and on the other hand, cancer. Scans in early 2021 showed tumor growth compared to my 2019 scans and as I booked my November appointment, it was with the expectation that we would be talking about treatment options for 2022. 

The familiar expression is: hope for the best, but prepare for the worst. Smart business planning perhaps, but also a guard against disappointment. Don't get your hopes up and you won't be let down. And I was bracing against the challenges that 2022 treatment might present: how to attend my nephew's wedding in March; how to visit Matthew in Copenhagen during his semester abroad -- presuming it still happened. 

But there's a problem with that thinking; when you prepare for the worst, you start expecting the worst -- or at least fearing the worst -- and that anxiety crowds out any space for hope, for optimism. And it's hard to be happy if you are living in a state of perpetual anxiety.

I like what I wrote back in 2013 when I said that "every year is filled with its moments of greatness, of pure happiness and gratitude... Sometimes, they're so tiny, so fleeting that you can miss them if you don't pay attention." 

If you're too busy expecting the worst and preparing for it, you can easily miss them.

A funny thing happened in November. Instead of my scans showing more growth, they actually showed some smaller tumors and others pretty stable. Will I need more treatment in 2022? I don't know. Right now, I have an appointment in a couple months and then more scans in August. So we'll see. But importantly, I feel fine. (I ended 2021 and started 2022 with a run.) And  so I'm simply going to hope for the best. Period.  

And that leads me to my New Year's Resolution, which is simply this: I will allow myself to Be Hopeful; I will allow myself to Be Optimistic; and I will allow myself to Be Happy

It's a resolution I hope a lot of people take.