Thursday, August 26, 2010

Down, down... Baby!

The results are in and my M-protein was cut in half and down to 0.2. This news brought some relief. Although I carry the spirit of domination in almost every and anything I do, having Multiple Myeloma can present doubts and fear at any given turn. Although I rarely succumb to those fears, I cannot help to think that the reptile part of our brain can do a dandy job in interfering with our hopeful hearts, prayerful mind and souls and even sound data/research.

The reason why I am so ecstatic about these results is because I have not had more than a 0.1 drop since halfway through my low dose chemotherapy. For those following along since I started my induction chemotherapy back in October 2009, after my 4th cycle of RVDD my descend to a Complete Response (CR) was halted by very slow decline that even with two more cycles of the four drug combination and a hit of Malphalan (i.e. BMT #1) could not crack my M-spike much. Here's a beautiful graph following my Cycle #5 Results.

Following 7 cycles (wow that was a lot) of RVDD, my M protein went from 3.1 to 0.6 (Good Partial Response) and most of the other MM indicators were in normal levels except for the plasma cell percentage in the bone marrow biopsy and the light chain ratio. Here are the results following each BMT:
  • Post BMT #1: M-protein down a tenth of a point to 0.5, bone marrow biopsy normal!
  • Post BMT #2: M-protein down to 0.2, bone marrow biopsy results TBD
Honestly, I really didn't know what to expect for my Day 60 post transplant #2 results. I remained hopeful that I would be at zero, with the reality that my disease (all Myelomas are not created equal) is more of a slow progressing, which could explain the slow decline of the disease.

Lastly, our boy Nick out in L.A. continues to remind and reassure us that often times a CR is not realized until 100 days after transplant or even until consolidation (post transplant chemo) has begun. We also know of one particular patient that has followed the same protocol as me and did hit CR until a four so months after his second transplant. So with more low dose chemo guns poised to dominate, I am confident that after a couple of rounds the M-spike days will be numbered.

Quick update on the domiNATION! We have had a couple more people sign up, so if you want to join forces with any of the Lead Dominators, post a comment on the Cancer Kicker Facebook Fan Page. Currently we have individuals, families and even Corporations that are coming together to raise up the domiNATION. Here are some of the locations:
  • Chicago
  • Midland (MI)
  • Belding (MI)
  • West Coast (Cali)
  • South Carolina
  • Columbus

Tuesday, August 24, 2010

Back to Oncology...Thanks BMT!

Yesterday I completed my fifth bone marrow biopsy and it didn't come with a prize, although I am holding my breath for a decrease in the M-Protein come end of week once I get my results back from UMCCC.

Today we officially transitioned back to our beloved oncologist and his staff after working over four months with a great team in Bone Marrow Transplant (BMT). Hats off to them as I stayed infection-free the whole time under their care and supervision. Including the last couple of months being completely drug-free...hooray!

As for returning back to Dr. Jakubowiak (J), I am very excited. I could not ask for anything more from a team so devoted to both patient care and finding a cure for everyone with Multiple Myeloma. I hope to share more about Dr. J as I continue to feel better/stronger because he is just a monumental person and our hidden gem here in Ann Arbor. Although if you talk to any of his other patients, they are in on the secret as well.

So by the end of the week we will have another checkpoint. Two weeks from today we jump off into the deep end again and return to chemotherapy.

On a powerfully awesome note, the domiNATION is taking off. I fortunately don't have the capacity to be too involved, so fortunately volunteers are stepping up and running with it on their own. The mission is inspire others affected by cancer and other life-junk, raise awareness for Multiple Myeloma and raise funds to accelerate the work Dr. J is doing at UMCCC to find a Cure. There is no reason why the research coming out of UMCCC can't lead to a cure for all MM patients.

If you would like to learn how you can get involved in the domiNATION, click here. I'll be creating a blogpost on this topic in the near future.

Monday, August 23, 2010

Myeloma Mondays #25: Shaun from East Lansing

Today's Multiple Myeloma Monday is very special to me because after being diagnosed as young Myeloma patient, Shaun Mason who also happens to be a former college football player (Michigan State) was my beacon of hope as I was in search of other young people with MM. His story is truly inspirational and I lean heavily on their unfolding story for strength.

Where were you born and raised?
  • Toledo,Ohio
Where do you currently live?
  • East Lansing,MI
When were you diagnosed and how old were you?
  • 01/15/2001- age 23

Did you know what MM was prior to diagnosis?
  • Had never heard of the disease
Is there anyone else your in family with MM?
  • No
What led to your diagnosis? (example: broken vertebra)
  • Dislocated my shoulder and fractured my scapula in a college football all star game.(2001)
  • Two vertebrae collapsed in my spine(2003)
How many times were you referred before actually being diagnosed?
  • Only once
Where have you received treatment?
  • University of Michigan Comprehensive Cancer Center
Explain your treatment history:
  • 2/2001: local radiation on shoulder and scapula on plasma cytoma
  • 3/2003: fractured two vertebrae full blown multiple myeloma diagnosed
  • 3/2003: started VAD treatments
  • 9/2003: completed VAD
  • 10/2003:Cytoxin/Autologous Transplant
Why did you or your doctor choose a specific treatment (For example, to have a transplant or not have a transplant, etc.)?
  • We discussed multiple options and decided on my treatment because of the reconstruction on my spine and my age. We knew if an autologous transplant was not responsive I could try other options, fortunately so far things have worked out.
What has been the side effects of the different treatments?
  • Experienced minimal side effects: complete hair loss, restlessness, weight gain and weight loss.
What has been the hardest thing about your MM journey?
  • The fear of not being there for my child and wife. Also my biggest inspiration.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • You will find out quickly that once you are over the initial shock that it did happen to you, and you get over the why me. You will find there are treatments options and this is not the end of the road. Stay positive- you will find out quickly that it can always be much worse-look around in the waiting room at the hospital.
How have you been able to stay positive and encouraged in your MM journey?
  • At first it is hard to stay positive because quite honestly the things you read about multiple myeloma are very grim and the outlook does not look promising. However, I am a firm believer that one of the biggest contributors to beating this disease is staying positive. I have two huge inspirations that drive me. The first one has been my son, when I was diagnosed my wife was pregnant with him. I thank God everyday that I am here to see him grow up and I will do whatever it takes to see him grow up. He just turned 7 in June. I want him to know his dad. I think this disease has certainly made me a better father because I cherish every minute that I get to spend with him. The second has been by wife because when I was diagnosed, she was 6 months pregnant with our son and it was as if she was not even pregnant. Instead of normal preganancy my wife slept on couchs and chairs in the hospital. She did whatever was necessary for me to get me through my chemo and transplants. It was simply amazing. So to say the least I owe these two individuals a father and husband, and that is my inspiration in staying positive and encouraged through this whole ordeal. I will do whatever it takes to give them that.
After being diagnosed... What perspective was changed the most?
  • You learn quickly what is most important in your life and what you thought were priorities are not really priorities at all but rather luxuries.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • No, but I did grow up in a neighborhood that was literally surrounded by farm fields.
What MM sites or blogs had you found good information from after diagnosis?
  • MMRF

Saturday, August 21, 2010

On transplant recovery and kicking people in the throat.

Phil and I were talking the other day about how easy it is to fall behind in blogging because so much happens that there's no possible way to catch up. But I will try.

Phil is still making slow progress. If he was anyone else he'd be sleeping 20 hours a day, but he's one tough cookie so instead he's playing with the kids and helping friends and trying to get back to regular life. And all with a smile on his face, bless his heart. Just recently he came to the conclusion that this treatment process has been really hard on him physically (which I was anticipating and trying to make allowances for all along, but I won't say I told you so).

I mentioned it in my last post but it bears repeating... Phil's body went through a lot. Twice. And it's going to be months and possibly years before he's back to where he was before all of this. As much as I'd like to compare it to childbirth recovery, it's much harder, though Phil makes it look easy and never complains, unlike me. Three times. If you're going through transplant, give yourself time to recover. And if you have a loved one going through it, by all means... don't treat the patient like an invalid but do be compassionate. We've appreciated the sensitivity we ourselves have been shown by so many as our little family has been recovering from this trauma.

As for me, I'm beginning to see the light at the end of the tunnel. From the moment we knew Phil had cancer, we were flooded with so much practical help from our closest friends and family. I will never forget those first few days, not only because of the complete shock we were in, but also because of the insane amount of love that we received. My little posse kept my family fed, my house clean and my head above water. I could never have survived without them. Now all of that help has allowed me to get to the place where I'm ready to stand up, dust myself off and take some unassisted steps toward autonomy. Just to put this in perspective, Phil has been sick since Ocean, who is now four-and-a-half, was five months old. We were only married for a year and a half before Phil's first blood clot, a pulmonary embolism. And that's just the tip of the iceberg. After all, this is just the myeloma blog. It's not the miscarriage blog or the getting fired blog or the moving five times blog or the losing loved ones blog. That's a lot of life crammed into a few short years.

Now, finally, I'm ready to be normal for once, realizing that our normal will include regular visits to the cancer center forever. But it also includes making dinner, scheduling activities and classes for the kids and taking vacations (something we have never done on our own as a family). I haven't mastered the laundry abyss or the cutting of the lawn but thankfully Phil's mom has been filling in the gaps there and not judging me as I am still figuring out how to juggle three kids while staying on top of the housework. (Hint: it's impossible.)

And speaking of my little angels, our two eldest kids have been kind of a disaster lately, and I'm at my wit's end with them.

I'm trying to find the balance between extending grace because this has been difficult for them, and sending them to their rooms for all of eternity. There has to be some middle ground. Currently I'm just looking forward to the start of school because, really, what am I supposed to do when Iris kicks Ocean in the throat because he won't stop touching her feet? Sigh. At least, at the end of the day, there's always Ruby who is currently too tiny to sass me.

Tuesday, August 10, 2010

A wee update, and a laughing baby.

Well hello there, friends and fellow myelomen and women. At almost 50 days post-transplant number two, we here at the Brabbs house are all alive and well. Phil's recovery has been much tougher this time around, and by that I mean he's generally more run-down and more easily tuckered out than at this point after the first transplant. Of course some of that could also be attributed to the addition of another child to the mix which, as most of you know, multiplies the workload and saps the energy stores exponentially.

I apologize for my absence. It's a funny thing, this process. Bone marrow transplants are often mistaken for surgery, but the procedure itself is nothing more than the push of a syringe into a bloodstream. However, the recovery is also unlike that of a surgery since the effects of the transplant continue for much longer than it would take to recover from an appendectomy, for example. Fatigue, food aversions, susceptibility to infection and a general feeling of "blah" can affect the patient for months. It's difficult to explain to people who expect that, after this procedure, the patient will feel better and be able or inclined to return to their normal life. The reality is that chemo bombs take a toll on the body, and a baby immune system takes time to grow.

With that in mind, for a time after both transplants I felt the need to close ranks and be in solitude, focusing on the health and well-being of our family. While thankfully usually a simple process for us, treatment has been emotionally overwhelming for me and I've tended to need some privacy in order to process the events of the last few months. I think it will continue to be a long road but overall I feel positively about Phil's treatment and care and how we've all emerged rather unscathed given the gravity of the situation. And I want to thank you all for your continued support, even in our silence.

We got the results back from Phil's 30-day check, and his M-spike is at .4, which is slightly lower than it was going into transplant. Our friend Nick kindly reminded me that it takes a while for one's body to catch up to the effects of transplant, so we're looking forward to getting the numbers at 60 days and 100 days to give us a more accurate picture of what's going on. At that point Phil will begin a maintenance regimen of a few different chemo drugs to make his body inhospitable to the cancer cells, hopefully altogether eradicating the myeloma.

While Phil's numbers and health continue to gradually improve, we're enjoying the remainder of the summer, and the remainder of meals in our freezer that our friends so generously provided. Not to mention the sweet treats that our neighbor friend keeps bringing over for us to devour. Yum! Most importantly, Phil just celebrated his second birthday since diagnosis and, we've discovered, birthdays take on new meaning in situations such as these.

I will leave you, for now, with a video of Ruby laughing. Because who doesn't love a laughing baby?

Monday, August 9, 2010

Myeloma Mondays #24: Katie from Houston, TX

Where were you born and raised?

  • Born in Rochester, Minnesota (parents were both on staff at Mayo Clinic) and raised all over the world.

Where do you currently live?

  • Houston, Texas

When were you diagnosed and how old were you?

  • July 25, 2008 – age 61
Did you know what MM was prior to diagnosis?

  • Yes, unfortunately, I did.

Is there anyone else your in family with MM?

  • My mother was diagnosed with MM at the the age of 85. It was in the early “smoldering” stage and didn’t slow her down a bit. She visited her oncologist each month for blood/urine work and led her active, amazing life. A year later she was killed instantly in an automobile accident. As terrible as that was, I’m so grateful that she didn’t have to endure even a fraction of what I have gone through.
What led to your diagnosis?

  • Kidney failure and broken vertebra and ribs.

How many times were you referred before actually being diagnosed?

  • Once
Where have you received treatment?

  • M.D. Anderson Cancer Center in Houston.
Explain your treatment history

  • 7/2008: Plasmapheresis, Dialysis, started Velcade, Dex, Thalidomide
  • 8/2008: Kyphoplasty for fractured T6, T7, T9
  • 9/2008 : Scans showed 7 fractured ribs
  • 9/2008: Hurricane Ike hit Houston – without electricity for 15 days
  • 1/2009: Began testing to see if candidate for ASCT
  • 2/2009: Kyphoplasty for fractured T8
  • 2/2009: Began Zometa infusion each month
  • 3/2009: Apheresis for collection of 15 million stem cells – I was participant in clinical trial in which I received 10 million cells at transplant rather than the standard 5 million cells – thus 15 million needed so I could bank 5 million for future use.
  • 4/2009: ASCT – hospitalized at MDA for three and a half weeks.
  • 10/2009: Began Revlimid as maintainance therapy – have been on and off a couple of times because of low blood counts.
  • 2/2010: Stopped Zometa because of damage to kidneys. My kidney function is always of concern.
  • 4/2010: One year out from transplant and things are looking good with exception of impaired kidneys. I receive Procrit when Hemoglobin count drops below 10.

Why did you or your doctor choose a specific treatment?

  • I was diagnosed at Stage IIIB with 75% infiltration. I knew I was in a dismal state and wanted aggressive treatment so I could live for awhile. Previous to MM I was in superb health.
What has been the side effects of the different treatments?

  • All of the usual suspects - terrible nausea and vomiting (lost 40 pounds), Dex made me crazy, neuropathy in hands and feet (tried acupuncture but didn’t help), constipation, bone pain, hair loss, unrelenting fatigue. I think the single worst incident was the bone pain during the time I was giving myself the injections of Neupogen twice a day for stem cell collection. The pain in my sternum was akin to the cliché of having an elephant stomp on your chest during a heart attack. Thank God I had been forewarned by all the paperwork I had signed.

What has been the hardest thing about your MM journey?

  • How it has frightened my family. I hate that they worry about me all the time. My husband and I had always assumed we’d grow old together. Now I’m not so sure. I try to find happiness in every day; however, it’s easier said than done sometimes.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

  • Go to a TOP cancer center for treatment , where your physicians and their staff have untold years of experience in treating MM and they can anticipate your needs. Even though you feel so out of control, you can take charge in some aspects. Remember that it is YOUR body and YOUR health insurance paying the hundreds of thousands of dollars, so speak up! For example, I found my first bone marrow biopsy excruciatingly painful. I realized that I would have many more in the future. From then on I had the biopsies done under anesthetic – I’m out for a few minutes, don’t feel a thing, and I’m on my way. Ditto for MRI until just recently. Now my fractures are healed enough that I can get through it without any sedation. I would want a newly diagnosed MM patient to realize that he/she must ask for help. Friends desperately want to help you, but they might not know how. Tell them! One of my friends recently commented that she had always been terrified of M.D. Anderson Cancer Center, and now she feels as though she could give tours of the place because she’s spent so much time with me there!
How have you been able to stay positive and encouraged in your MM journey?

  • It’s difficult. I’m always waiting for the next shoe to fall. My husband is a phenomenal caretaker. I literally owe him my life. My children, grandchildren and sisters are so loving and supportive, but I feel tremendous guilt putting them through this. My adored Tony (90 pound black Lab) is always right by my side or curled up on my feet. My transplant oncologist was concerned that I was depressed and suggested a psychiatric consult. I take the antidepressant Lexapro and see a therapist at MDA every month. This has helped me so much. I do believe that God doesn’t give us a burden greater than we can bear. I know that there are millions of people in far worse shape than I. I am extremely grateful to be at MDA. People come from all over the world, and here I am just a few miles away. When I feel a bit stronger and pulled together, I’d like to volunteer at MDA.
After being diagnosed... What perspective was changed the most?

  • I truly no longer sweat the small stuff. I keep any negative people out of my life (and that includes physicians and nurses.) I indulge myself in what I love (being with my grandkids, talking frequently with my sons and daughter, planning future trips with my beloved husband, staying close and speaking often with my few close friends, keeping my herb garden in decent shape, playing the piano and knitting when the neuropathy in my hands allows, eating chocolate cake if I feel the inclination.) When I hear of a friend or just an acquaintance who has been diagnosed with cancer I call them right away, and I tell them that I will keep calling (or e-mailing, whichever they prefer) to keep tabs on them. I offer to take them to chemo and stay with them or be with them when they have their port inserted. I am in the unique position to be able to calm their fears.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

  • I spent part of my childhood living in North Africa (Morocco.) I recall having to wash all food in a solution that tasted like Clorox. When we would visit European countries or the U.S. my dad would joke that it was odd to eat fresh food and water that didn’t taste like Clorox! Also, there was a paper factory nearby where we lived that emitted an awful odor and a few times each year the heavy sirocco winds would blow in and you couldn’t even go outside because the odor was so horrible. I lived on the Exxon Refinery compound in San Nicholas, Aruba for three years in my mid twenties.
What MM sites or blogs had you found good information from after diagnosis?

  • Ohhh……you need to be so careful here as there is so much terrifying and outdated info out there. I think the sites that connect with MM patients are the most useful.