The last post and this post were originally one in the same-written with fresh, raw emotions. Those same emotions that probably provoked me to delete. So instead you get the whole story until now, diluted by hindsight. So here goes...
It was a Saturday and we were on our way to Canton to visit friends when I got a call from Mom. Selfishly, I thought she was calling to check in on me per my ‘news’, but once I answered, I heard that tell-tale tone in her voice. You know, the one that raises the hair on your arms and creates a pit in your stomach. She got right to the point, “Your Dad's being admitted to the hospital. It looks like he’s in kidney failure. We don’t know much else right now. I just wanted you to know what is going on.”
That sickening calm came over me and I said ok, probably asked a question or two that I can’t remember now and told her to keep me updated. I hung up the phone and started to cry. I told Jonathan what I knew and we drove on in silence.
I’m not sure I remember much about that weekend, but I do remember doing some frantic googling because of how scary “kidney failure” sounds. I mean, when one of your organs fails, there’s no coming back, right? Well not in this case because he was quickly treated. He went to the ER because with severe back pain and a slew of tests revealed the kidney problem.
A couple of days to confirm, but the doctors suspected cancer. It turns out that the kidney problem is indicative of a specific type of cancer, Multiple Myeloma. He tested positive and they started him on Chemo immediately.
So what is Multiple Myleoma? Well this is how the Mayo Clinic defines it - Multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognize and attack germs. Multiple myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.
That’s all very technical so I just tell people it’s in the same cancer class of leukemia and lymphomas.
Now what do you do, who do you call when you feel lost and you can’t lean on your mom and dad? Well, it helps when your best friend, the one that just beat the shit out of breast cancer, also works as a Nurse at Children’s Hospital specializing in leukemia and lymphoma bone marrow transplants.
Kelli will probably have a better recollection than I, but I remember it all came pouring out--- Jonathan currently not working, me starting a new job (possibly), pregnant and now Cancer! While she claimed to not know much about this type of cancer (because it very rarely presents in Pediatrics), she knew more than most people, both from a first-hand experience of getting a Cancer diagnosis to also caring for patients that have treatment courses similar to what Dad would ultimately go through. She told me what she knew in that calming nurse way that didn’t over promise success, but also didn’t scare me to tears. OH I Love you Kel.
As the never ending appointments started for Dad, I would ask for as much detail as I could remember and then quickly dial my inside source. She would help translate what I heard third hand. What did she know about this drug and that drug, what does this diagnosis mean, should he be going to a different hospital???
The plan was for Dad to be on Chemo for three months (not the most aggressive Chemo, but not exactly anything anyone volunteers for). After the first three months they would check his numbers (what numbers, I don’t know, but they’d check them) and if the numbers were good (low?) They’d probably recommend an autologous bone marrow transplant.
What the what??
Essentially it’s a transplant of your own bone marrow back to you. They take the bone marrow – dose you with Chemo (like a shit ton of strong chemo) I think they call it ablative, and then give you your own bone marrow back. This is safer than getting a bone marrow transplant from someone else. But either way he has to be in the hospital for three weeks because he will have NO immune system to protect him.
After the transplant, they'd give him three months to rebound, you know, from almost killing him with Chemo. Then they check his numbers again and he’ll start back on the same lower dose chemo he started with.
Can you imagine all the questions I had for Kelli?
The most frustrating part is that all of the above information was not for sure. I think they were trying to tell us that it is a very fluid process and there are so many factors to take into consideration. There was no way to tell what the treatment plan would be in 6 months. We wanted to hear the plan, the checkpoints and the assurances that this would work. We were digging for hope and optimism. Yeah, the Oncologists don’t work that way…
How do I distill a whole year of my experience with this into one post? I don’t know.
One day, I’d like to ask my mom to describe her feelings over the past year. I know my parents were in a precarious spot of being scared, but also driven to protect us and not worry us. I can’t imagine the fear, anxiety and suffocating worry.
All I can do is talk about the experience from my perspective. Deep down I was (and continue to be) more optimistic than my sisters. Maybe it was all the talking to Kelli, or just my denial that this would get really bad, but I didn’t think that this would be the end for Dad, just a really painful battle. I remember expressing my optimism once to my sisters. I immediately felt embarrassed and naive when these highly educated medical professionals didn’t have the same positive expectations. I also was worried that my optimism would be mistaken for under-appreciation of the pain, exhaustion and sickness dad would experience.
There were times when I was selfishly grateful that the worst of the experience would take place close to my home so I could be there for support. But to be honest, this stage in my life made it difficult for me to be the support I wanted to be for my parents. I want to be there for my young kids, but also pulled to be near my parents. Couple all of that with a new job in which I had to save all of my PTO for an upcoming maternity leave so we could still pay the bills. It was often a gut-wrenching feeling, dissecting the 24 hours in the day wanting to be in all places, knowing each day I took off work was stealing time from my unborn baby, but each day I worked, stole time away from my parents, all the while deferring my own feelings. There were days I cried at my desk, days I cried in the bathroom at home and days that I screamed at Jonathan for things that had nothing to do with him. Saying it was a hard year doesn’t really do it justice. And that’s just my perspective, I wasn’t even the one going through Chemo or caring and worrying for my partner who was trying to fight cancer.
It’s a lot to distill into one post, which is why this one is so long. I will end it with this text that Dad just sent this week – almost one year after his initial diagnosis.
"Good news today from the James. The latest bone marrow biopsy revealed Minimal Residual Disease MRD! The test is now refined to even reveal very low levels. In my case as Melissa told me they reported a big fat zero! This is the best possile outcome at this point...But in any event wanted to share this good news with all of you who have cared for me and worried for too long. Love you all."
It's never really over, but we are so lucky! Here's to a Healthy 2018!