Riding The Wave – Multiple Myeloma

“What part soever you take upon you, play that as well as you can and make the best of it.”  ― Thomas More

Dave and I are still basking in our recent check up in Arkansas, meeting with our doctor last Thursday. In a nut shell, Dave’s treatment has successfully ended. His scans, tests, labs, etc., are all good. Better than good in some cases and could be better in others, but not bad.

So indulge me as I bring you up to speed. Dave’s three year maintenance is up early December 2012. He missed his six month check up in May due to yet another doctor leaving the Myeloma Institute. That was our 3rd. Between Dave’s busy work schedule and MIRT’s declining admin personnel, Dave didn’t reschedule his “six month check up” until the end of October! The real push was our local oncology group telling him his prescriptions were run out from Arkansas and me jumping up and down like a three year old having a tantrum until I was exhausted and exasperated. Sometimes it really stinks to be a caregiver of a non-compliant adult! Anyway…

So the issues were this… It had come to my attention about 18 months – two years ago, that Arkansas was subscribing to the idea to continue patients on some sort of maintenance therapy beyond the three years. I was disheartened by it and knew that Dave would be as well. I held off telling him for about a year. When I finally did he was confused by it. They were moving the finish line that he had his eye on. There are two points of view I think you can take on this: 1) it is a disease where the treatment protocols are changing and very fluid, and 2) this totally sucks and it’s not what they said! For me it was a feeling of both and so I presented Dave with the data that I had as unbiased as I could and indicated that it was his decision and his alone to make. He could decide to continue (if that’s what UAMS wanted) or decide he was done. But he had to “own” his decision and that I would support whatever he decided. On top of that we had a new doctor we didn’t have a relationship with. There has been the growing agreement amongst physicians even in Arkansas that long term use of Revlimid in a patient like Dave has an increased risk of secondary cancers, without knowing for certain the benefits of long term use in a maintenance, post SCT setting. Not having been in Arkansas for 10 months I wasn’t sure what UAMS was subscribing to in maintenance therapy anymore. Dave decided he was predisposed to ending his maintenance therapy as originally planned. My hope was that the doctor would hear him on this and give his blessing, knowing that Dave would be much more confident in his decision if he had that.

We were both hopeful and stressed about it. Managing that stress was important to both of us and we did a pretty good job keeping our eye on our goal. We had little doubt that Dave’s tests would all be good. Isn’t that kind of funny? So we completed the three days of tests and while doing that we had several Myeloma Meet-Ups that were fabulous. We had dinner with Angie and Mike who I had met while speaking at a MIRT meeting about our journey with Myeloma and we have maintained an online relationship ever since. Mike is high risk and been in relapsed treatment since February. He and Dave share a mutual love of baseball and coaching their children and had a great time talking about the tournaments and leagues they had been involved in. Additionally we discovered that Angie, Dave and Mike were all in the telecomm business, so that launched into another wonderful conversation. I met up with a couple from Delaware that are on the FB support group and indicated they were in Arkansas. I met them in the infusion waiting area while Dave was getting one of his scans and we had a great time getting to know each other and talking about all those things we talk about in Myelomaville. I’m hopeful for them. And then finally another couple from our northern border who I have been friends with online. It was a meeting that was a long time coming and over the top exciting for me. She was neutropenic so we agreed to meet at their place and her wonderful hubby/caregiver cooked us an amazing lunch. These opportunities to meet others sharing in this journey somehow always inspires me. You would think the last thing you would want to be doing is hanging out with a bunch of other cancer patients in treatment and quite the contrary is true for me. Dave has come to enjoy it as well. He even turns off his phone and is 100% engaged.

Off to the appointment on Thursday afternoon to face the music. As expected our tests were stellar. The doctor was called in and briefed by his trusty side kick. I’m armed with our notes to have “the discussion” and he says, “how long have you been on maintenance?” as he’s managing the thick medical record file to find it himself. He looks up at Dave and says, “I think you’re done. We are the most aggressive in treatment and keep patients on maintenance the longest. You can’t say you’ve been under treated.” Dave gets a conservative smile, a little teary and says, “I would like that, very much.” (We both experienced a huge EXHALE!) With that the doctor smiles and I say, “Dave do you have the champagne in your backpack? I think we need to pop that baby and celebrate!” We all chuckle and then launch into a discussion about Arkansas, my blog, trends in treatment, etc. Then we get into some logistics. Dave’s port, monthly mail-in labs to continue, our check up schedule being six months, then 9 months, then at one year intervals. Dave’s immune system hovering at 200, with 1200 being normal. Requiring he stay on the antibiotic and re-immunization discussions once he gets around 400 or higher. Needless to say, we were feeling pretty GIDDY as we left the clinic and had the good fortune of running into our northern border couple we had had lunch with that afternoon and they were just as excited as we were to hear our great news! A few important phone calls and group texts were sent out.

Dave and I went out to dinner and had margaritas to celebrate (we really didn’t have any champagne but probably should have!). I toasted Dave on what a STELLAR job he had done through these last four plus years and how proud I am of him. He toasted me that he couldn’t have done it without me and thanked me for being there for him every step of the way. Sniff, sniff. We didn’t sleep all night and we had to get up at 2:45 am to catch our early morning flights out of Arkansas. Dave headed home to California and I headed up to Baltimore, Maryland to spend the weekend with our daughter (more on that in another post).

Kinda says it all uh?

When I returned from the east coast we had our follow up appt with the local group here in California (yesterday). Word quickly spread around the office and infusion center that Dave WAS DONE! One of the infusion nurses ran us down at the elevator as we were leaving and we stepped out to get hugs and congratulations. She was over the top excited for Dave. The Valet was gobsmacked and walked us over to the car going on and on with how excited he was for Dave. We were GIDDY all over again to have everyone just as excited as we were.

Dave continues to work out with Lou and now may feel comfortable going to three days a week. We will continue to work on the things that supported him during these difficult years, nutrition, exercise, mental and spiritual. We will take a more proactive role in getting his immune system restored sooner. Dave has decided to leave his port in for now and so it goes.  

Tags: Maintenance Treatment, Total Therapy, UAMS