Ready? Here we go.
I was diagnosed May 2, 2011 at the ripe age of 49. (note this is the same day that Bin Laden was killed, which I had no idea about until a few days later) For about 3 months leading up to this date, I was fighting horrible fatigue, daily fevers, and night sweats. I used to ride my bike to work every day. 10 miles each way. I was having huge problems catching my breath while riding. I was totally unaware that I was living with severe anemia, hence getting oxygen to my system was tough. For 3 months we tested me for an assortment of ailments. Never once was cancer mentioned or considered. Eventually I was hospitalized, we did a bone marrow biopsy, saw my kidneys were on the verge of failure and BAM we had myeloma. I'm Kappa light chain myeloma but can't remember if I have chromosomal deletion.
Dr Phan was the oncologist on duty while I was in the hospital, which is an amazingly fortunate break for me. Couldn't ask for a more caring, communicative doctor.
Note that yesterday, there was a new nurse at Dr Phan's office. A male nurse...my first one in four years.
We started me off with Velcade and dex. MM got worse. We added doxil. Didn't work. MM got worse. We dropped doxil and added thalidomide. Didn't work, MM got worse. At this time, Phan sent me to Berenson. Berenson wasn't messing around and put me on treanda and added a second oral steroid, medrol...at the time a rarely used myeloma chemo drug. But we had to do something, or as Dr B said, I'd be lucky to see the end of 2011. We saw fairly immediate results. Numbers started dropping after one cycle. We did twelve cycles and then went on to maintenance for about a year and a half.
Also note that in the interim, I went to City of Hope to discuss an autologous stem cell transplant. They wouldn't touch me however, given my poor kidney function. Keep that in mind, when you see success rates of transplant facilities....they may cherry pick patients to boost the odds of success.
Berenson is quite and not quietly anti transplant. I'm fairly entrenched in his camp given my success. I did harvest my stem cells just in case and they are frozen away at Cedars Sinai.
Another note, I've only been kidney impacted. Even today my bones are good. I make sure I do weight bearing exercise regularly to keep the bones strong. so far so good. Fingers crossed.
Also in the interim I had a kidney doctor that wanted me to start dialysis. I wasn't symptomatic of failed kidneys. But with creatinine over 8, she said it was time. I got a fistula in my left wrist. Before that she refused to take out a crazy catheder that was hanging off my neck allowing me to do plasmaphersis...a crazy machine blood cleansing that was the precursor to dialysis. Appointments with her were doom and gloom. Her tone was basically that I was going to dye. F her. To this day, she is my least favorite doctor I've had. Another reminder, you can drop any doctor you want if you aren't feeling a connection. I dumped this kidney doctor. I got the fistula, but opted to not do dialysis. From my perspective, the kidneys still worked.
Leslie and I saw a few different nutritionists to get me on a kidney friendly diet. Now we have my creatinine down to low threes. Out of "failure" range. I've been able to avoid dialysis and add certain foods in moderation to my diet. As along as we keep the myeloma under control, my kidneys will keep working. I also do acupuncture and focus on the kidneys with that.
Last year, I had my first relapse. We caught it early and put me back on treanda. 8 cycles later we had my numbers down to an acceptable range. For this past 5 months I've been back on easy breezy maintenance.
Fast forward to today. Nearly 4 years in. Doing good. Mentally it's still a challenge though. I work full time, I work out regularly. I got married. Life is fairly normal. But, I think it's important to mention the following:
- I still do chemo once every two weeks.
- I see a doctor for some reason or another at least once a week.
- I get weekly procrit shots (if needed) to help my blood counts.
- I do lab work twice a month. Because of my fistula, I can't use my left arm for blood draws. We took my first port out a while ago because it might have been infected. So infusion and blood draws were all in my right arm. Those veins eventually stopped working. So I got a new port and now I have to go to Phan's office for biweekly blood draws. Makes the effort a bit more time consuming as opposed to just going to the lab. Saw a new kidney doctor last week and he wanted his lab to get some blood. It was a real bitch and took several tries to get blood from the right arm.
- I have energy and mood roller coasters from my biweekly dex. Adds to the challenge.
I've met some amazing people over these 4 years and made some life long new friends. I've also lost some friends. And I continue to watch friends struggle mightily. Inspiration though is gained from all these people. Everybody is strong and focused and dedicated. I do my best to emulate them.
Thanks everyone who has supported me all this time and thanks for understanding that I'm living a new normal. New but not necessarily better or worse. Just different. What choice do I have?
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