05.01.10 I’ve Been @ This Battle for Over 18 Months Now…

Eighteen months was the ‘bottom range’ of my life expectancy at diagnosis [it was something like 18 months to “Quit googling the stats — they are outdated and great strides are being made in treating myeloma these days!!” ], but of course Greg & I had no intention of settling for that. We’ve let some huge “anniversary” dates go by without even mentioning, I think we just stopped tracking time and milestones around all this. We’ve passed my one year since diagnosis (Oct 8), my one year post-stem cell (Mar 11) and even the cats 2 year birthday (April 26), all without mention or celebration really. However, I am slightly hung up on the fact that my parents died on or near their birthdays 4 years apart, and my 47th coming up September 2nd, will be 4 years after my Mom. Seriously though, I don’t PLAN to keep the pattern going. I will agree to a 2nd stem cell transplant long before I start telling Mom I want whatever heavenly German Chocolate Cake (my usual choice growing up) she can whip up in Heaven.

My favorite goat: King of the Hay.

The ups and downs of the light chains in my blood and the overall “dragging down” of my counts needed to be explored so Dr. Anderson ordered the dreaded (and painful) bone marrow biopsy (my 4th) a few weeks ago. He figured it was time for “Re-Staging” — that we needed to find out whether the myeloma was tearing up my blood or if the treatment itself (Velcade and Revlimid and Dex) was causing the constant anemia and poor health. I was requiring platelets and blood transfusions just about twice a week. We stopped the Revlimid, thinking it was the main offender, but it is also considered the most effective chemo treatment for myeloma, so that was with mixed blessings, meaning I feel better NOW, but for how long and to what cost in the long run? There were also several days of cycle that we were unable to treat with Velcade because my counts were so low. Below is an updated chart of the light chain measures (from bloodwork) we have been watching, which is not as effective as going in and doing bone marrow biopsies of course.

The blue line, now at 13,500 — is the scary one.

Greg kicking back with Andre.

But how am I doing really? Well, the anemia and chemo and steroids and such that we managed to get in means I have been walking around feeling half-dead sometimes, unable to exercise or accomplish much; not quite having the quality of life all of us prefer. I have a routine of doctor visits, infusions, dialysis treatments, taking meds and managing symptoms as they arise. Even my off weeks have been filled with day-long appointments of going for bloodwork and fluids. And there’s always SOMETHING. I had severe abdominal pain that kept me in bed for several days that I never officially had checked out since it eased up on its own and I suspected it was the result of a 12-pound cat jumping on my belly and bruising me internally (how embarrassing). So in all this I have learned to take each day, each MOMENT really, and enjoy what I can. When those good minutes, hours, days string together into clumps of time where NOTHING is going wrong or hurting or requiring attention, I live them, I mean, I really live them to their fullest.

My new tree, a Red Oak I had to have.

And God help anyone around who tries to act pissy or moan about something trite, like a driver cutting them off in Texas traffic. (Its just a way of driving in Texas… bitching about it won’t change it.) I read, watch movies, hang out with my kitties, play on Facebook, try to paint, and have been working on planting flowers and now vegetables in our gardens. Greg bought a Trek Navigator for me but I have not had the energy to go too far on that yet, tho it is really comfortable. We go on dinner dates and to movies and take care of ordinary things as well as joining the roommates making or getting dinner sometimes. We attend church at Chinn Chapel United Methodist and I am continuing with our ladies bible study plus Greg and I joined the “Tables of 8” monthly get-togethers for fellowship. I try to stay on top of things like laundry and shopping and planning small trips coming up this summer. Greg has had some road trips and will actually be out the next two weeks, then we go together to Atlanta for long weekends twice in a row, all doctor-sanctioned and regulated.

Back patio expansion – flagstone completed.

So it can look pretty normal around here and of course the regular things in life can really hack me off, like the step-daughter leaving my name off the wedding invitations (just says “Mr. Gregory Taylor…”) or someone close to me deciding they can’t handle knowing me anymore especially through all this. And lately — to be even more incredibly shallow — I have even been bitching about weight gain, I was so thrilled to get down as thin as I did (even though everyone look worried and told me I looked too frail and ghastly), only to have the combination of steroids, inability to exercise/move around AND the glucose solution used in dialysis contribute to a significant increase again. I guess I got set straight pretty firmly this week as God let me know that my priorities are all screwed up again. According to the latest bone marrow biopsy results, my physical body has not been the only thing growing through all this, the myeloma has made major progress too.

In the words of Dr. Anderson, who took the time to summarize everything in an email (which further leads me to believe he is a very smart man who has got my number in more ways than one):

… your bone marrow biopsy from 4/20 showed 40-50% plasma cells (compared to less than 5% at Day 100 [post stem-cell transplant] and about 80% at diagnosis), so the myeloma is “growing” through the current treatment …

Ace lounged out on the living room rug. 

I spoke with Dr. Lonial [@ Emory] …and he thinks Cytoxan would probably have a higher chance of working in this situation and should cause few additional side effects. He and I have both seen patients respond to Velcade/Cytoxan/Dex when they had stopped responding to Velcade, so I know it can work and it is worth a try.

The only trade-off is that the Cytoxan can decrease the blood counts and they are already starting very low (at least the platelets are). The dosing of Cytoxan I am proposing is not a big dose and it is actually given in pill form rather than I.V. in order to minimize side effects. Your dose will be 600 mg (12 tablets at 50 mg each) taken twice during each cycle. It is usually given on days 1 and 8 but I would like to go ahead and have you start tomorrow so we will change to Days 4 and 11 (both Fridays) of this cycle and see how you do before deciding to give it on Day 1 or wait until Day 4 next time. [This will be in addition to the Velcade infusions and Dex steroid taken on Tuesdays and Fridays.]

My babies, Andre and Ace.

Cytoxan can cause some nausea in some people… Cytoxan can also cause some hair thinning but at this dose it may not. The main side effect to watch for will be drop in blood counts but we will be checking those twice weekly anyway (and now that we know that the counts are mostly down due to myeloma rather than the treatment we can feel better about pushing forward with more chemotherapy)… I think given the number of plasma cells we are fighting this is probably the most likely to succeed (short of doing a 4 drug regimen or another transplant, which we will keep in the back pocket if this is not working).”

St. Francis in front of our house.

Meaning, I have a lot of hard work ahead of me, or the aggressive cancer is just that, an aggressive cancer, and we are battling against time. Being on dialysis is making all of this more difficult since the chemo and drugs are filtered out of my blood with every treatment (I try to only do 3 on days I receive chemo) so I am going to look into switching to hemodialysis in case that will help with the battle. We are still hopeful that we can find a cocktail that my body will respond to, and hopefully without too many added side effects, it will be the Cytoxan. And, in an attempt at humor, I guess being prescribed a drug with the added side effect of “nausea” may just be the answer to all the bitching and moaning about all the weight gain and how cancer patients are SUPPOSED to look…

A. and L. “Soon-To-Be” His Wife.

We have a lot of living ahead of us, even just in the short term. Future son-in-law A’s commissioning as a 2nd Lieutenant in the Marines is coming up in 2 weeks and L and A’s wedding is in 3 weeks. I am looking forward to seeing my sisters that weekend and hanging out at Chateau Elan with them. Other son-in-law Cody (in Wilson, NC) is graduating from Nursing School in June. My nephew Dylan is graduating from high school in June and has chosen Syracuse for college; we are extremely proud of him. [Go Orange!] We have a National Annual Meeting that includes spouses that I am hoping to have good energy to participate in (and see everyone!) at the end of May. Greg will be working over 3 weeks at the National Jamboree at the end of July/ beginning of August and rather than attempt to go out there (outside of Washington) I will try to arrange an extended visit to Illinois, staying with sister Kathy’s family, if my health and chemo schedule will allow it.

Rose bush in the corner of backyard.

I hope this finds everyone doing well and for all the good Moms out there (you know who you are!!) I hope you have a very Happy and Blessed Mother’s Day. I am especially proud of my sisters and all their love and dedication to the awesome kids they are raising. I love my nephews and nieces and enjoy watching them grow up, seeing the choices they are making and directions they are going. I look forward to every performance, graduation, wedding, etc. that I will get to attend in the future and continue my fight to make being a part of those life events possible.

Bloated me, hiding behind Ace.

As always, I appreciate all the continued love and support in my battle. At my toughest moments, when I need them the most, I definitely feel your prayers. Sometimes an unexplained calmness comes over me and I realize its actually quite easy to figure out, it is all of you wanting me to feel peace and forge ahead with a positive attitude. I truly believe I have all the things in place to wage this war, look how far we have come — good doctors, willingness, a large strong support network, your love and prayers, my incredibly loving and supportive husband, and of course, good drugs for fighting the cancer and even better drugs to manage the symptoms and keep me comfortable!

Love, Karyn