[Molly2012]

Thanks and hope

by Molly2012 on Sat Dec 01, 2018 11:43 am

When I was diagnosed in 2012 at the age of 34, I didn’t have much to add here, but I regularly read the forum and individual stories were so helpful to me, as were the regular contributions of so many people on interpreting the research. I thought that if I did well, I would come back here and post in case it helped others feel hopeful.

My diagnosis was a complete shock, as I had been healthy and active. After having severe head­aches for about a year that I thought were migraines associated with my period, I went to a doctor. He checked my blood pressure, which was 200/130, and followed up with kidney tests. My creatinine was, I believe, 6.4, and I was admitted to a hospital with acute kidney failure. I was told I would likely need a kidney transplant.

They did a kidney biopsy and the results came in after I was home from the hospital. It was light chain deposition disease, and I needed to be in the hospital for immediate treatment and testing, which also revealed that I had multiple myeloma. The testing showed it was standard risk, and my doctor believes it was a slow growing, “indolent” type of myeloma, more characterized by high light chains than a high M-spike, and often treated it more as light chain deposition disease, or compared it to amyloidosis.

I had a near-complete response to a year of treatment with various drugs. Cytoxan (cyclo­phos­phamide) was ineffective, I got some mild neuropathy from Velcade, and my kidneys reacted poorly to Revlimid, which is not a known reaction. Ultimately I ended up on dexa­meth­a­sone, Kyprolis, and Pomalyst, which was quickly effective for me. A year after diagnosis I had a stem cell transplant, which was effective, and we confirmed complete response in summer 2014. I had two years of maintenance Revlimid. For various reasons including my age, I did two cycles of dex and Kyprolis as consolidation,

There was not much hope that my kidneys would recover, and my treatment was focused on quickly getting the myeloma under control to preserve whatever kidney function I had left. How­ever, now 6 years post diagnosis, my kidneys are stable at a creatinine that bounces between 2.5 and 3.0. Other than taking blood pressure medication and avoiding certain drugs, my kidneys do not impact my quality of life. Kidney doctors will often tell you that injury as serious as mine (nearly 70% of the biopsy sample was scar tissue) are unlikely to stabilize, but that has not been the case for me. I am not even currently on a transplant list because the need for trans­plant is unlikely in the short term. I no longer have to follow a renal diet, and my potassium and phosphorus are under control.

The path has not been without difficult moments. I had a staph infection during treatment from my infected port. I had engraftment syndrome and fairly significant mucositis during my transplant. For several years, I napped more frequently, often after work, and had some fatigue. I had a small stroke during maintenance that has not left any noticeable effects, and I now take Plavix (clopidogrel} and a statin daily to prevent that from happening again. Treatment was long and difficult and scary, and those difficult moments made it feel like there was always more scary news around the corner. As a result of treatment, I am unable to have children. I didn’t freeze eggs / embryos because carrying a child with my degree of kidney damage is also risky. Fortu­nately my husband and I were not 100% certain we wanted kids, and we discuss adoption as an option if we choose that path.

My current quality of life is great. I exercise, eat a mostly vegan diet and work full time, In fact, I worked full time throughout treatment with the exception of 2 months off for my stem cell trans­plant. I often worked during my treatment because I never had bad side effects (other than getting a bit grouchy from the dex, occasional pelvic bone pain, and a tiny bit of neuropathy which was quickly resolved.). I travel frequently. My hair came back curly, which I love. I feel the same way I did before diagnosis. I believe that my illness has helped me appreciate life more and be a more empathetic, compassionate and generous person.

I am sharing this story because so few young people are diagnosed and it was extremely traumatic and shocking, and I craved hopeful stories. I no longer worry much about relapse, though it will probably happen. I think this is a combination of acceptance, faith in new drugs, and research into CAR T-cell and other therapies, and being blessed with innate optimism and resilience.

My advice: find a myeloma specialist. I also believe that my aggressive treatment was key to my outcome. Work to understand your labs and the research and get help from a friend or family member who can discuss it with you, Ask lots of questions and learn enough to advocate for yourself. If your kidneys are impacted, drink a gallon of water a day, especially when your body is still producing light chains, exercise, and research every supplement, herb, or medicine before you take it (doctors don’t always check if something is nephrotoxic, so I often had to look out for that’s myself.). Avoid ibuprofen, naproxen (Aleve), proton pump inhibitors, Sudafed. I also recommend taking fish oil.

My advice for your heart and head, if it is useful: learn how to meditate and do yoga if you are able. Eat healthy, but treat yourself frequently. Augusten Burroughs great essay “how to be sick” recommends a brownie or French fries when you get bad news. Find exercise that you love if you are able, even if it is just short walks. It helps you trust your body again, Lean on your family and friends and ask for help. Go to the dark places and make peace with them in any way you can. Be creative. I am a writer and writing about my experience was helpful. Get a good therapist and a good psychologist and don’t be afraid to take anti­depressants or anti-anxiety drugs if they are helpful (and you won’t know they are helpful until you try them.). When possible find ways to help others or contribute to the world. Not only does it give you a sense of purpose, but it also helps you to not focus exclusively on yourself! Keep working as long as you can to make sure you retain your identity outside your illness. Know that you are not alone and everyone eventually faces mortality. Life is nothing more than a blink in the face of infinity, and whether you get 40, 60, 80 or 100 years, it might always seem too short.

Stay hopeful and strong. New treatments are looking so promising. And thank you to all who contribute to this forum. You have helped me more than you will ever know!

Molly

[WholeNotherWorld]

Re: Thanks and hope

by WholeNotherWorld on Sat Dec 01, 2018 5:13 pm

Your story is so compelling, and your words of wisdom will be read over and over again – certainly by me, and likely others. Thank you for posting such a thought provoking topic.

[Dimamar]

Re: Thanks and hope

by Dimamar on Sat Dec 01, 2018 6:10 pm

Molly, you are an incredible human being. Wise, brilliant, and compassionate. Thank you for sharing, and G-d bless you!

[Merryl]

Re: Thanks and hope

by Merryl on Sun Dec 02, 2018 1:37 am

I just read this and I love it. So inspiring.

Merryl

[Mike F]

Re: Thanks and hope

by Mike F on Tue Dec 04, 2018 12:57 pm

Wonderful post!!

I particularly like the line about how exercise helps you trust your body again. I really agree with this. Treatment involves a certain loss of ownership of your body. It's controlled by the disease, the doctors, the drugs, the infusion center, etc. Once you're through it all, the sense that you own your body doesn't necessarily come back by itself. I found that a good exercise program gave me back that sense the my body really does belong to me and that I can trust it to handle some hard work. That's the kind of thing that really lets you know that you're done with treatment (at least for some period of time).