“Get your affairs in order.”
“You have a rare, incurable blood cancer called Waldenstrom’s macroglobulinemia.”
“Average survival rate is 6 years.”
“Given your symptoms and blood test values, we have to treat immediately.”
Those were jarring words for someone in his early 40s, married, and with three children ranging in ages from 7 to 16.
My first thoughts were not about what would happen to me, but how it would impact my wife and children; how my treatments and side effects would affect how they viewed me; and how my possible passing away at a relatively young age would affect them, emotionally and financially. But, after a few numb, tear-filled days of fretting and worrying, my wife and I made the resolution to face the disease head-on – to hang on to the notion that science, faith, and positive energy would find a way to ensure that I would live to see my children through all the important moments in their lives and that we should focus on getting the most out of every day we had left to be together. And we haven’t looked back since!
That’s not to say it’s been easy – far from it. Everyone’s life, whether cancer-stricken or not, will have its ups and downs, its joys and frustrations. But the diagnosis sharpens the focus on each – making the bright moments even more special, and somehow also making the tough ones more bearable.
My diagnosis came in October 2003, and I had the classic symptoms of fatigue, shortness of breath, and heavy nosebleeds (all of which I initially blamed on sinus infections and overwork), along with an IgM value of 6,700 mg/dl. The initial treatment with cladribine (a nucleoside analog) proved ineffective, so we followed it up with what, at that time, was one of the standard treatment regimens – FCR (Fludarabine, Cyclophosphamide, and Rituximab). Fortunately, I was teaching at a college at the time, and the treatment schedule worked out to be administered on the days I did not have classes, and stretched out into my summer break time. The FCR proved to be quite effective, giving me five good years of remission, where I was symptom free, and my IgM hovered in the 1,000 mg/dl range.
Initially, I read all the anti-cancer nutrition books I could get my hands on, and read up on Eastern, American Indian, and Western philosophies as to how to improve one’s well-being. None of them helped me arrive at the “miracle cure”, but each, in its own way, helped me realize that it was up to me (and my family and support system) to make the best of the situation and expend every effort to live life well and fully, no matter what would come my way. During my initial course of treatment, I did try experimenting with Essiac tea, a variation of the Budwig diet, and fresh-pressed carrot/orange juice concoctions, and used them throughout my treatment. Once I got better, however, I stopped using those, and just decided to be more conscious of what I was putting into my body and to do it in moderation.
Being an instructor in information technology, I had a predisposition to using the internet to research the diverse subject matter that interested me – from things Italian (which is where I was born), to wine making (one of my passions), to my new-found companion, Waldenstrom’s macroglobulinemia. Right away, I came across the International Waldenstrom’s Macroglobulinemia Foundation (IWMF), and their online patient and caregiver discussion list, IWMF Connect. Both have truly been lifesavers for me, and an amazing source of comfort and support. There were only 400 or so members at the time on the discussion list, and we all got to know each other pretty well. I recall exchanging many good-hearted emails with fellow frequent (and not-so-frequent) message posters, sharing our experiences and perspectives on how best to live with WM, whether in or out of treatment. We became an extended family of sorts over time – offering a helping hand, a comforting word, and sometimes, a shoulder to cry on.
Through my communications on IWMF Connect, I soon made many “waldenfriends”, some of whom I still communicate with regularly today, and some of whom, sadly, are no longer with us. Still, they all continue to be an important part of my life today, and I owe them all a great debt of gratitude. Through them, I gained a better understanding of my disease, the treatment options available, and how to simply just move on with my life, despite the WM.
In time, I came to realize just how unique and special an active, engaged patient-led cancer organization like the IWMF is! Being a very grateful recipient of the help provided by the IWMF, I looked for ways to return the favor, ways in which I could use my skills and talents to help others – first by actively participating on IWMF Connect, then stepping in to function as its moderator in 2007 (a role I still play, eleven years later), serving as its webmaster, and by volunteering to serve on the IWMF Board of Trustees.
During my initial period of remission (about five years), I did get to see my oldest son graduate from high school and begin college, my daughter play for a high school basketball team that won the state championship two years in a row, and my youngest son graduate from grade school to high school, where he proved to be a pretty decent trumpet player. My wife and I were doing our best to hold it all together, and to share the special moments of watching our children grow into young adulthood.
Life was going so well that we decided to pay a visit to my parents and siblings in Italy. I scheduled a check-up with my doctor before we left. We noticed that my IgM was trending upward again, but I had no symptoms, so there was no cause for concern. “Go, enjoy yourself,” was the message I was given. We took advantage of that advice, visiting relatives, visiting the usual tourist spots – Naples, Venice, Assisi, Positano, Rome, and Pompeii – and enjoying good company, good food, and good wine (of course). Yet, as the days wore on, I came down with a case of incessant coughing, and I felt more and more fatigued. By the end of the trip, we just chalked it up to a busy schedule while on vacation, and perhaps coming down with some sort of virus.
Almost as soon as we touched ground back in Pittsburgh, the troubles began: my hemoglobin was dropping, I had severe pain at the base of my spine, and I simply did not feel well. And my IgM continued rising. At the time, I was working full-time in an administrative capacity, and also teaching part-time on evenings and weekends, and any disruption to that schedule could affect my family’s finances. Fortunately, I had “banked” enough sick and vacation time since my last remission to be able to weather the coming storm!
Initially, my symptoms and condition included hemolytic anemia (my red blood cells were getting chewed up in my body almost as fast as it was making them), hypogammaglobulinemia (low IgG and low IgA, making me more susceptible to infections), cold agglutinin disease (this required that whenever the medical staff was drawing blood or giving me blood, the blood had to be kept warm), a Polyomavirus (BK) virus (causing fevers and fatigue), peripheral neuropathy (due to the treatment I was receiving) and a lymphoplasmacytic lymphoma (LPL) tumor at the base of my spine (causing severe back pain). Oh, and also the rising IgM level (around 3,000 mg/dl).
So, over the course of three months, I was admitted to the hospital ten separate times (due to fevers and severe anemia), had a total of twenty pints of blood fed into me, had radiation treatments to shrink the tumor (which worked, by the way), and got my stem cells banked in case my condition worsened. The treatment regimen also included chemotherapy agents of fludarabine and high dosages of Cytoxan, along with Rituximab and Dexamethasone. I went from walking under my own power with a full head of hair to losing all my hair (due to the high dosage of Cytoxan), and being in a wheelchair for several weeks (due to the location of the tumor at the base of my spine). If there was a diagnostic test to undergo during that time, I had it: x-ray, MRI, PET/CT scan, lumbar puncture, and frequent blood analyses, to name a few. Once the treatments took hold and started working their magic, and with the help of home health personnel and a local physical therapist, I graduated from wheelchair to walker to walking stick to walking unaided over the next few months. And all that remained was a lingering neuropathy in my right foot.
Being someone who likes to play with data, I charted my results and experiences over that period of time and shared the results with my “waldenfriends” on the discussion list. I did that not to toot my own horn, and not in a desperate attempt for sympathy, but rather, to educate others as to what to look for when experiencing health issues, how to assess one’s own situation, and how to have meaningful discussions with your care team. And of course the chart was of great value to me in tracking what was working and what was not working for me personally.
It was also during that time that the spirit of the IWMF community of fellow caregivers and patients really came through for me! Besides sharing their own experiences and “armchair hematologist” advice with me, I received countless well-wishes from members around the world – people who offered to pray in their churches and prayer groups for me, place notes in the Western Wall in Israel on my behalf, and just send positive vibes and energy my way. I hope they all realize just how much of a comfort and a help that support was to me, as I truly believe it all had a role to play in my recovery!
Again, I went into a period of remission – in fact, the treatments worked so well this time that my tumor disappeared, and ALL my immunoglobulins (IgA, IgG, and IgM) were virtually undetectable in my blood, and I had 0% WM cells detectable in my bone marrow biopsy results. However, the low immunoglobulin levels, and periodic serious sinus infections meant that I would require intravenous immunoglobulin (IVIG) treatments from time to time – an unpleasant procedure that I considered a fair price to pay for being in remission. During this remission period, I did get to see my oldest son get into and graduate from graduate school, walk my daughter down the aisle during her wedding (yes, much wine – and tears – did flow that evening!), and my youngest son start college. In addition, I started working out at a local gym – to get in shape to do some long distance running with my kids. In due course I was able to run with them in three separate 5K events – clocking in at around 40 minutes for each one (not bad for a cancer warrior who had never run before)!
With no detectable immunoglobulins for a period of six years, my doctor and I started to consider using the “C”-word (for cure, not cancer) for my particular condition…but, then…I started to feel a slight twinge in my right posterior area…
After a couple of scans, my hematologist and an orthopedic surgeon, in agreement, diagnosed that it most likely was a “classic case” of a benign schwannoma at the base of my sciatic nerve. (Its proximity to my nerve however, precluded any type of biopsy to validate that assertion.) So, in November, 2016, under the knife I went, and, not surprisingly for me, the schwannoma ended up NOT being a schwannoma after all. It proved to be something more involved than initially anticipated around my sciatic nerve, and was actually an LPL tumor. Yes, despite no trace of IgM in my peripheral blood, and no trace of WM cells in my bone marrow, LPL cells were still looking for homes in my body. Fortunately, the tumor was small and they were able to extract most of it. We then followed that up with radiation treatment and eight rounds of Rituxan, with periodic maintenance Rituxan to follow after that. A year and a half later, my latest scan shows that the LPL tumor soft tissue mass continues to shrink, and we’re planning for another round of Rituxan soon – to keep my immune system in top form to continue the fight against the malignant cells.
But (isn’t there always a “but”?), my story (or perhaps I should say “our story”, on behalf of my wife) took another interesting turn during my time of post-LPL tumor treatment. My wife, Terri, and I had decided to take a trip with our family to Napa Valley. Ever since we embarked on our home wine-making adventures, we had always wanted to visit there, and now was a great opportunity to do so. So, off we went to a home we rented in Santa Rosa (a year BEFORE the wild fires) – ready for some serious exploring and tasting. A little before the trip, my wife began to have some pain and swelling in her ankles, which she attributed to overwork and the fact that she had had ankle pain off and on for a long period of time due to flat feet. So, she brought a prescription pain medicine (Naproxen) with her for the trip, and off we went. In the course of that week, her swelling became more pronounced – her legs were swelling considerably, as were her arms, her belly, and even her face. Once we returned to our home near Pittsburgh, she immediately went to see her doctor, and despite the medication she was given, her condition continued to worsen. After two separate hospital stays, and treatment with IV medications, and after several tests, it became apparent that she had a “classic case” of nephrotic syndrome (exacerbated by the Naproxen), but additional blood tests showed some other anomalies that required further analysis. So, much to our surprise, she had to also see a hematologist – and made an appointment with my own hematologist in Pittsburgh.
Now, the shoe was on the other foot, and I was in the “caregiver chair” this time around – quite a surreal feeling for me – and it gave me an even greater appreciation for everything that my wife has done for me over the years as my primary caregiver and advocate. After some additional blood work, a PET/CT scan, and a bone marrow biopsy, it was determined that my wife also has a rare blood condition – Monoclonal Gammopathy of Renal Significance (MGRS) – and it apparently also had a role to play in her nephrotic syndrome.
So, the journey continued – with my wife being treated with low-dose Velcade (administered subcutaneously) over the next several months, and with some of her treatment days coinciding with my own IVIG treatment days. On those days, we would sit opposite each other in our infusion chairs, keeping an eye on each other for any adverse reactions to the treatment, and taking turns napping due to the pre-meds. Almost a year after her issues began, while the nephrotic syndrome symptoms have been resolved, and the Velcade has been holding the cancer in check, the current strategy is to add a monoclonal antibody to the mix (Daratumumab) in an attempt to completely eradicate the monoclonal cells. So, over the next two months, we will once again be spending time together in the infusion room, being served up with different flavors of antibodies! It’s quite amusing to see the look of confusion on the faces of the nursing staff when we arrive…initially not knowing which one of us to approach as the patient and which as the caregiver. Let’s just say we both play both roles, and leave it at that.
Sure, it’s a disappointment to not have the cancer completely removed from either of our bodies (the LPL tumor for me and the MGRS for my wife), and there’s a bit of fear of the unknown when it comes to considering our futures in “cancer land”. But we’re comforted by the fact that we’re still relatively healthy, and can go for walks, hikes, bike rides, and the occasional wine tasting trip. In fact, a couple of months ago, we actually were able to take a “wine country” trip (this time to the Willamette Valley in Oregon) without any serious health issues cropping up for either of us! Incidentally, the Willamette Valley is noted for its world-class pinot noir wines, which also happen to have very high levels of resveratrol (a natural cancer-fighting agent) – so the trip was quite therapeutic for both of us on many levels! We look forward to more trips in the future to places like the Finger Lakes, Washington State, Niagara on the Lake, and possibly Europe again.
As you can see, we continue to try to live life as normally as possible. (What’s “normal” anyway?) We look forward to our eldest son getting married near the end of this year, we look forward to our youngest son finishing college in the next couple of years and embarking upon his own career, and, well, we continue to look to the future much as any other married couple would. For both of us, cancer is just another of life’s hurdles that must be faced and overcome as expeditiously as possible. Sometimes we stumble and fall, but we always get up and keep going. After all, life is to be lived, no matter what.
There’s a tag line I like to use when I’m sharing messages with my extended Waldenstrom’s family on the IWMF Connect discussion list, one that I coined when I first started my wine-making hobby in earnest: “wine, love, health – what else is there?” (Or, in Italian: “vino, amore, salute – cos’altro c’è?”)
Perhaps, with a newer perspective for both myself and my wife in our joint cancer journeys, I should add: “There is LIFE”! However long or short a time we have left of it, it is meant to be savored, each and every moment.
Best of health – of life – to all!
Peter De Nardis
Pittsburgh, PA
May 2018