Big Sis In Burgundy: Approaching Deana's New Birthday
Continuing my trend of writing from exotic locations (and I mean that a bit tongue-in-cheek), I am on Long Island today, mixing some business and some pleasure. The best part of this trip is staying with Mom. There is just nothing like time with Mom.
Mom was at my house two weeks ago, for the first time since my sister Deana was diagnosed with multiple myeloma. This is my first visit to her house since late April 2011 as well. These happenings, while seemingly minor, serve as reminders that we are thankfully residing in “the new normal.”
Deana’s September appointment with Dr. Agha was terrific. Her hemoglobin was 11.7 g/dL, and her IgA protein was below the normal range. If she were in kindergarten, she would have come home with a big star on her paper – and Mom would have promptly displayed it on the refrigerator. There is nothing more we could hope for right now…except for a cure.
Deana’s next appointment with Dr. Agha is December 17.
Deana, our sister Darrie, Mom, and I will have just returned from a mother/daughter trip that Deana arranged back in February. The trip was planned to coincide with my late father’s birthday, and it will be very nice to all be together that day to remember the man we loved so dearly and miss so deeply, even more than 17 years later.
At Deana’s appointment with Dr. Agha, there will be many issues to discuss. This appointment will be the first since Deana’s new birthday – November 23 will mark the one-year anniversary of Deana's stem cell transplant. With the one year anniversary of remission also approaching on January 25, we need to dialogue about his plans for Deana’s future treatment.
In late January, he indicated Deana would take maintenance Revlimid for a year. In much of my reading and research, I see that some of our fellow multiple myeloma warriors engage in some type of maintenance treatment for longer periods of time. While I know Deana is anxious to be done with taking pills, we want to do all we can to be sure that we choose the best course of action to keep Deana in remission. We are doing well with “the new normal” and want to stay on track.
It feels strange not to have seen Deana for 10 weeks. Being with her, Darrie, their children, and Mom every month (and sometimes more) for the period of Deana’s treatment was a pleasant byproduct of a really awful situation. I find myself missing my sisters, nieces, and nephews a lot.
Thankfully, I’m only three weeks away from seeing Deana, Darrie, and their girls, Kate and Clare. We’ll all gather for the Marine Corps Marathon the last weekend in October. I am again participating and will be holding thoughts of those of you I have met through this column and elsewhere and will honor your multiple myeloma journeys as I traverse those 26.2 miles.
As always, there’s more I could share, but literally, I’ve gotta run…training for a marathon is akin to taking on a part time job!
Bringing this column to a close, I want to offer special thanks to those who share comments month after month. I appreciate every one.
Deborah Dietzler is a columnist at The Myeloma Beacon. Her sister Deana has multiple myeloma.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Thanks for sharing the insights with your family and your sister's journey, Deb. It has been a real journey for you too...it's good for us patients to remember that our families are there 'travelling' with us. And good luck with the marathon...my husband ran at least a dozen marathons 'back in the day'. I always felt sad that my illness de-railed his exercise for a time, but now he is back to a lot of cycling and runs 20 km at a time on weekends, usually (a half marathon distance). I have been able to get back to the 5 km distance...i can go further, but get a lot of aches and pains if I do...but it doesn't matter. Any good outdoor exercising is welcome, and we count our blessings for Thanksgiving and every day!
I really enjoyed your article. I can relate so well to your families' journey. I was diagnosed with MM in Sept. 2010. My husband and children and I live in the Kansas City area but are from Arkansas where our parents, siblings and their families still reside. When I was diagnosed, my sisters and I fought for me to receive treatment at UAMS in AR due to it being an excellent MM institute and even more importantly to me, one sister is a MM oncology nurse there, all 3 of my sisters live within 25 miles of the clinic and my parents and brother live 45 miles away. Who could have a more excellent set-up? Had I stayed in KC I would've been alone more often than not, as my girls were in college and had jobs and my husband needed to work as much as possible, although he certainly used his family leave time to be with me during the most important times and worst illnesses.
I loved you referred to the time each month you spent with your sisters, mom and nieces and nephews as "a pleasant by-product of a really awful situation". I didn't love being sick, or the treatments, but I did love being with my sisters and their families through that 10 months and it made the ordeal MUCH easier to get through. I really miss seeing them all too and am encouraging my husband to consider moving back "home". I love my husband and daughters more than life itself, but my sisters got me through this.
Regarding your Deana's maintenance, I can share what I am doing. My maintenance began 9/17/2011, with what they call RVD, short for revlimid, velcade, and dexamethasone, I take r evil mid in a. 21 day on-7days off cycle, with once a week velcade and dex, I am scheduled to continue this regimin for three years. This first year I seemed to stay sick with colds, bronchitis, low. WBC , hemoglobin and platelets
Oops evidently hit submit before I finished, sorry. It was my dex day and i took 5 mg ambien to help with sleep...it finally kicked in! Anyway, ran fevers and such on a near constant, basis from January through May (but I work with 3 to 4 year old special needs kids :)) . So my doctors skipped some of my velcades and revlimid doses for 3 months. I also developed severe restless leg syndrome that turned out to be a type of neuropathy from meds. I took requip for awhile and that helped for about three months. yhen had worsening RLS plus stinging in hands and feet off and on. Taking 5 mg oxycodone at bedtime was the only way I could tame the RLS so I could sleep. when i was off the velcade. And rev., my symptoms would lessen significantly. When I was seen by my UAMS doctor in June he put me back on the whole regimen but at lowest doses for the velcade and revlimid. He wouldn't touch my dex though. I asked about reducing the length of my maintenance period and he said for me to try a little longer at the reduced dose and we could discuss it again when I return in Dec. Like Deana, I am "tired of all the pills" and weekly clinic, but my oncologist at UAMS is adamant that if his own brother had MM, he would have him follow this protocol as his best chance of long term, event free survival. Since June, my RLS came back and in Aug. my fingertips of right hand went numb, and i had toe cramps in left foot, most likely due to velcade and/or revlimid but I was well until school started. Now have caught a cold and stomach bug, but no worse than the other teachers. My labs are looking good with my WBC staying 2.5 to 4.5, hemoglobin 11, and platelets usually around 100. And finally, when I told my doctor in KC
! My sister Pamela, who is the onc nurse at the myeloma institute is keeping me up on progress of other patients. They just had a 20 year survivors reunion and had a good turn out. Doesn't that sound good! Pamela's sure I'll be there in 18 more years myself. I will pray for best results for Deana. NOTE: I have dealt with extreme fatigue and weak muscles since diagnosed. To be expected of course, but it took at least six months after final consolidation chemo before I could get up from the floor or out of a bathtub without pulling up on something. That has resolved but I am still weak and the fatigue has never gone away. I thought it was just me, my doctor just kept saying to exercise more, but if you check out the recent Pat's Place blog here, you'll see it's something many still deal
about my recurrence of neuropathy he recommended I take a double dose of over the counter B6 (200 mg) and see what happened. In 10 days my hand and foot neuropathy are gone and my RLS is mild and less frequent. I reduced B6 to 100mg and all is good! If it continues this way through winter, I'll stick with the plan for my 3rd and final year, but if I have health or pain issues we'll probably stop velcade 1st, and work back from there. The studies I've read indicate velcade is the least proven to provide benefits that outweigh the side effects so far, then revlimid is showing good results for 3 year event free survival, but I think I've read that the benefits even out after four years. Dex is a constant on all treatment plans I think. Anyway, my long, drawn out reply here is that maybe 3 years of maintenance is too long due to side effects, and I've definitely wanted to stop after the first year, but if my doctor truly believes 3 years gives
me the best chance for long term survival WITH good quality of life, then I'll give it my best shot. This is something Deana should check with her dr. but be alert to side effects. Of course my family, sibs and parents all want me to stick with it as long as possible
with and believe it to be due to meds. Another side effect to be aware of. Sorry how long and drawn out this has been. I started out to be short and sweet, but I know you want the best information out there to help your sister. My sisters are constantly researching info for me and I know I'm getting the best possible care because of it.
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