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Ed Forum 2018

Stories of Hope

 

Lisa Weldy: I’m Myself Again…After WM Took Over my Life

I’ve come to learn that none of us with WM has a “typical” journey. This very rare blood cancer affects us all so differently, not just with symptoms, treatments, and severity, but also with age of diagnosis. When I was 28 and a new mom to my first child, elevated IgM was randomly found through some lab work (for a medical issue completely unrelated). After making the rounds with several types of specialists, I was diagnosed with MGUS. Being a very Type-A person, I really despised the “undetermined significance” part of the acronym. While MGUS sounded horribly scary at the time, I was told by a couple of hematologists that I shouldn’t worry. I was so young, they said, and if my MGUS did eventually transform into WM (which I was told was EXTREMELY unlikely), it would be when I was really, really old. I was told to live my life, check in with a hematologist once a year (just for routine labs), and not to worry. So, I did just that – I lived my life, mostly without fear, except for the weeks leading up to those dreaded labs. Year after year, my IgM stayed pretty stable. Being an anxious kind of person already, if my IgM rose even twenty points, I would freak out, asking my doctor over and over if this meant things were progressing or transforming. He would kindly reassure me that this was normal and not to worry. “See you in a year,” he would say, “go live your life.”

Years went by, my two children grew older, and my husband and I enjoyed living in a great family community, fairly close to most of our extended family members. I was a stay-at-home mom and loved being with my kids, volunteering at my kids’ schools, and enjoying hobbies like photography and running. By the time I was in my late thirties, I was in the best physical shape I had ever been in, and had fun participating in over twenty races (including 5Ks, 10Ks, half marathons, and duathlons). I wasn’t the fastest by any stretch, but I loved the thrill of competition, training, and seeing physical progress.

So when I turned forty in 2012, I wasn’t really filled with dread for the approaching decade. I was hopeful – my kids were then 9 and 12, my mom was getting ready to retire, and I was looking forward to her visiting more often. I was pretty happy overall.

We all know where this is going, right?

Three weeks after I turned forty, my feet went numb. I experienced horrible sensations of tingling, numbness, electrical jolts, and discomfort in shoes or when sheets touched my feet at night. At first, this was chalked up to a sports injury, and I visited physical therapists, and a podiatrist. The podiatrist put me on gabapentin, which did help, but not enough. Next stop, a neurologist, and ultimately, full circle back to my hematologist (even though I wasn’t due for my annual labs for several more months). After a bone marrow biopsy and extensive labs, and almost five months since my foot numbness had begun, I was told my MGUS had actually transformed into WM. I think my hematologist was just as surprised as I was, and I felt like I had been duped all these years. Had I been lied to, or were my doctors just really convinced my MGUS wouldn’t transform in someone so young? Either way, I was incredibly pissed off!  

It was around this time that my mom was officially diagnosed with Alzheimer’s – she was 68 and had just retired. Despite the fact that I was thrown two terrible curve-balls at the same time,  I was in some small way relieved that at least for now, I didn’t have to simply “watch and wait” anymore for my MGUS to transform. I could face my fear directly and get on with fixing the actual problem. Alzheimer’s doesn’t have a solution, but my WM could have one. Since I like the feeling of having control over my life, the idea of having even some small semblance of it was comforting. Since my hematologist had only seen three other patients (in his whole career) with WM, he referred me to a WM specialist in another state to figure out a plan of action. Upon visiting with the WM doctors, it was suggested that I wait a little bit before starting treatment, since, except for my PN, I wasn’t that symptomatic yet. So, we decided to do the dreaded “watch-and-wait” a little longer. Within six months, my hemoglobin started dropping, I became easily fatigued, couldn’t run any more, and my IgM had risen quite a bit since my last labs. At this point, treatment was suggested – a front-line combination regimen that would consist of Rituxan, dexamethasone, and Cytoxan. I was told to expect approximately six months of treatment. Perhaps because I was young and otherwise healthy and fit, I believed my doctors thought I’d achieve a good recovery within a fairly quick amount of time. I was nervous but very hopeful, and trusted the process.   

It turned out, however, that I was overly optimistic. My treatment{s} proved to be several and difficult, with adverse side effects along the way. Following is a brief chronology of the main treatment regimens I underwent:

  1. Rituxan, dexamethasone, Cytoxan. Not only did I get really ill (awful constipation, nausea, Rituxan flare, cranial nerve palsy that resulted in a shut left eye for seven weeks), the treatment didn’t work in lowering my IgM or reducing my constitutional WM symptoms. The Rituxan flare was most concerning, though, and I ended up hospitalized for a week. I also wound up needing plasma exchanges and blood transfusions.
  2. Next up: Velcade (bortezomib), subcutaneously. This therapy failed to reduce my IgM, which kept rising. I was losing my appetite as well as a lot of weight, and needed more plasma exchange and blood transfusions to keep my numbers in check. I had a chest port put in to help with the plasma exchanges.
  3. Last was bendamustine and Rituxan. We were hoping for no flare this time. Well, that failed, and my IgM went up over 10,000. Due to my ever-thickening blood, I found myself often passing out and falling over upon standing up. One time, my husband had dropped me off at the hospital for plasma exchange. While he was parking and I was trying to walk into the building to sit down, I started to fall over and hit my head on the ground in the process. An ambulance had to come (from the other end of the hospital), and I spent a few hours in the ER being checked for concussion. Eventually I was admitted and got the plasma I had originally come in for that morning.
  4. After these first three unsuccessful rounds of treatment, I was becoming very ill. I had always been a petite person, but even at 5’2”, getting down to 83 pounds is very concerning, and even life-threatening. I had no appetite, no hunger cues, and was basically subsisting on three Ensure shakes per day to survive. I decided to switch to another highly-recommended WM specialist to try to find some new ideas for treatment. This new physician began consulting with my local one, and the two of them worked together to identify new treatment options. The first one we tried was Revlimid (lenalidomide) and Afinitor (everolimus pills that I could take at home). While this therapy also didn’t notably reduce IgM or improve HGB, at least it allowed my body to heal a little – I was able to stomach real food again, and started gaining back a little weight. But since my WM symptoms did not diminish, this fourth regimen also had to be scrapped.

By this point, I had become severely depressed and anxious. I didn’t understand why all of these frontline WM treatments were not working for me. I felt I was being punished, that I had done something wrong. Over the course of all these failed treatments, I also started getting random panic attacks. They would come out of nowhere, and I felt like my chest was tightening up and I couldn’t breathe. My supportive husband tried hard to help me, but his telling me to “just relax” was perhaps the least helpful thing ever! I was like an exposed nerve, and I lost any sense of filter I had once maintained. I literally cried every day, sometimes many times a day, and would often wake my husband up in the morning screaming “but I don’t want to die!!” Previously an independent person, I became extremely clingy and agitated whenever my husband would leave the room, even if I knew he was cooking, cleaning, or taking care of our kids. It wasn’t until months later that I really began to understand how worn out he was becoming from trying to carry the load, and this was with a lot of help from others. I remember so clearly, looking at a framed photograph of myself with my husband, probably taken a few years before this had all happened. I was smiling, healthy, and appeared completely oblivious to what would occur in the not-too-distant future. I remember feeling complete disbelief that this had actually happened to me. I felt as if I was almost having an out-of-body experience and looking at some stranger. Nearly every day I experienced this feeling of:  wait, what?? I have cancer? No, you must be mistaken…you see, I’m actually a healthy, active mother of two who doesn’t have time for this crap. I exercised every day for years and ate healthy foods. I’m only 41. My new narrative simply didn’t fit, and it remained a continual shock that I could not reconcile. I also remember staring out the windows of our family room, seeing neighbors walk or jog by, or parents playing with their kids. I didn’t understand how normal life went on for everyone else, while I was suffering so much. When friends would get up to leave after visiting me, I felt the strongest pangs of jealousy that they got to go somewhere other than my family room, that they could go to the grocery store or Target, or attend their kids’ sporting events.

My community rallied around me, and I was extremely fortunate in that regard. Friends I hadn’t seen in over ten years since my kids’ playgroup days appeared at my doorstep with freshly-prepared meals. In fact, I had over 100 meals brought to us during the 7-8 months when I was at my sickest. Friends and family also showed up in other amazing ways, including driving me to my countless lab/chemo/plasma/blood transfusion appointments so that my husband could continue to work his full-time job; driving my two kids to their various extracurricular sports and camps, etc.; hiring me a temporary house cleaning service because I’m a neat freak and was quickly losing my sanity; giving me massages, cleaning out my fridge, helping me shower (hard at times because of weakness, port, other issues); and simply calling or sitting with me on the couch. To say I was grateful would be a huge understatement. These helpmates showed up and taught me what it means to really be selfless and giving. Many told me that they felt blessed to be helpers in my time of need.

At this point of my greatest disability, my kids were 10 and 13 (5th- and 8th-grades). I missed countless band concerts, award ceremonies, and often when I could leave the house, needed to wear a mask because my WBC was so low and I had already been hospitalized for serious chest infections. Once, I was hospitalized and had to beg the doctors to let me out so I could be home for my son’s 13th birthday party. A good friend ended up buying a dessert for this party. She also bought my daughter’s first bras, as I was unable to go to the store with her – that was emotionally painful for me. As for the kids themselves, they were fortunately at ages where they could feed themselves, get to the bus stop, and make their own lunches. I never let them visit me in the hospital or the chemo room, and while we did keep them informed of my failed treatments, we also tried to protect them from too much fear and trauma. What I remember most about that first summer when I was really ill and weak, is my son sitting on the computer playing video games (most of the day), and my daughter up in her room doing who-knows-what, but likely reading. I knew I wasn’t winning a parent-of-the-year award for attentiveness, but I had only limited energy to do anything about it. My daughter (now 16) tells me she barely remembers anything from that time period. I mention little details and it’s like news to her! Perhaps this is good, but it’s shocking to me that I view that time as being filled with so much drama and despair (me crying all the time, panic attacks, lack of ability to do anything but sit all day), and she seems to have come out unscathed and remembers none of it.  My son (now 18 and a freshman in college), remembers a little – he played on the computer in the same room in which I sat on the couch for months on end, but he doesn’t remember as much as I would have expected. Are kids really that self-absorbed, and if so, maybe that worked to my advantage!?

I made promises to myself that if I survived this ordeal, I would do the following:

  • Make every day count!!
  • Never take another day for granted
  • Never take my spouse/kids/family for granted
  • Never worry about what the scale said and be grateful if I had any extra weight on me
  • Give back to the community everything that I had been given, plus more
  • Want nothing more in life than to see my kids grow up

Meanwhile, I still was in need of a treatment that worked for me. My local oncologist had run out of ideas (always depressing when they tell you that!). Imbruvica was just about to be fast-tracked through the FDA and we were keeping it as a viable option, but there was one more idea my new WM specialist wanted to try first. It was a fairly new combination therapy – CaRD (carfilzomib, Rituxan, dexamethasone). Because of my past history with Rituxan flare, we started off with just the CaD portion of the treatment. And then, as that appeared to be working, we added in the Rituxan slowly. Amazingly, and to my relief and astonishment, this one seemed to be the winner. Soon enough, I was up to almost 100 pounds, able to eat again, and feeling more like myself. A huge thing for me was starting to drive a car again – after eight months, I had almost forgotten how! I was still a bit weak, however, so I limited myself to very short trips when necessary, and didn’t drive with any kids in the car. Eventually, as my blood numbers improved significantly, I gained back my driving confidence and trusted that I wouldn’t pass out behind the wheel.

In June 2015, after finishing all the rounds of my CaRD treatment, as well as maintenance rounds, I arrived at the end of my 2.5 year-long treatment ordeal. To celebrate, my husband and I decided to take a once-in-a-lifetime trip with our kids to Italy and Switzerland. On my final day of chemo, I rang the bell, hugged my wonderful nurses, and we literally left for Europe seven days later.

One aspect of cancer that isn’t talked about as much as it ought to be is the aftermath of treatment. The day came when my treatments were finally over and my blood labs had vastly improved. Now what? Of course, I felt immense gratitude and relief to be healthy again. But, I had spent SO much time with my doctors, nurses and caregivers, feeling like I was actively fighting my disease, and now?….there was just all this time in front of me without them, and no more action plan. Was I really just back to where I started at age 28, when I began watching and waiting for WM to appear (again)? I had trouble feeling confident in my newly-achieved state of health that I had fought so freaking hard to attain. I didn’t know how to be a person in the world anymore. Looking at me, no one could tell that I had gone through such an ordeal. Should I tell people who didn’t know me before? How could anyone truly know and understand me without having all that knowledge? For a long time, I felt as if I was treading in uncharted territory; and it was uncomfortable. In some way, I strangely wished to still be on maintenance chemo, because at least that meant I was actively doing something, not just passively waiting for WM to return. At age 43, I KNEW that bad things could happen to me, because two of them already had. The world was a scary place still, and I didn’t trust myself to simply go on existing and hoping for the best in the future.

I’d love to say I’ve figured this all out and I’m about to share the solution with all of you. Sorry, I haven’t, and I can’t! I can happily say, however, that my IgM is currently 18 mg/dl(!), my hemoglobin is completely normal, as is my WBC (even though it took a year or so to normalize again). The only number that hasn’t really recovered is my IgG, which hovers between 60 mg/dl and 100 mg/dl. Thankfully, I haven’t needed IViG because I’ve been miraculously healthy (maybe two minor colds since finishing chemo, knock on wood!).

There were many aspects of life I had to relearn after my series of treatments:  cooking, cleaning, exercise (I had lost all muscle tone during my season of massive weight-loss, and it’s taken me almost four years to get most of it back), and contributing to my community. I am happy to report that I pretty much feel like myself again (well, at least version 2.0).  I am still a stay-at-home mom, and I enjoy many of the same hobbies and activities that I used to do. As my kids are getting older and moving out, I am focusing now on the next chapter of my life – so many exciting possibilities!

I do have, of course, some physical reminders of my WM treatment journey. I still need to be on a fairly high dosage of gabapentin for my PN in my feet. I’ve gone down a little in dosage, but whenever I try to lower it more, I feel the tingling return. The years of chemo also put me into early menopause, which, of course, comes with its own set of fun symptoms…  My bone density (which had already been slightly osteopenic), became even worse, and I’ve had to go on a bone-building medication. My cholesterol has fluctuated up and down as well. None of these issues are life-threatening, though, so I just look at them as the cost of doing business with WM. I see my WM specialist once a year, and my local oncologist six months later

Remember all of those grandiose promises I made to myself when I was at my sickest? Yeah, well, perhaps you won’t be too surprised to know that I haven’t followed through on all of them (any of them?). It’s easy when we’re feeling desperate and living in a state of fear to tell ourselves things that we really do mean at the time, but are almost impossible to fulfill once we’re doing better. I truly meant those promises back when I made them, but as time went on after completion of chemo and I morphed back into some semblance of my former self, I slowly slipped back into some old habits. Plus, it is really hard to Make Every Day Count! Some days are just days that exist, but I don’t change the world or impact anyone or anything. And that’s ok. There are times I beat myself up a bit because I feel this self-induced pressure to be a better person now, to be someone who knows this deep wisdom about life and death because I’ve traveled through Cancerland. Some days I do feel wiser, but most I do not. In fact, most days I feel more confused than I did before cancer. I’ve had people tell me over the past few years that I must feel so much stronger for having gone through such an ordeal, that everything happens for a reason, that God/The Universe/Life wouldn’t give me more than I can handle/insert any other well-meaning cliché…  Truth is, I do not view going through cancer as any sort of blessing, or a life’s trial that was imposed on me in order to prove myself. I think that in life, bad things happen to people, and when they do, we do our best to dig ourselves out the best we can. I am proud of myself for all the digging I did to get where I am today. Am I stronger than someone who didn’t go through my ordeal? I don’t think that I am, but I know that I am a stronger me than I otherwise might have been. I believe we all do what is necessary to fight for our survival when/if that becomes necessary.

One thing I am very sure of is how very fortunate we WM’ers are for having such an incredibly generous and goal-driven organization in our IWMF. For having such a rare disease, wow, we are so lucky to have this group on our side, championing our cause with research, support, and hope every step of the way.

 

Lisa Weldy
Midland, Michigan
April 2019

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