Thursday, April 29, 2010

A Gem of a Day!

Amidst all the chemotherapy, stem cell transplants, tracking cancer numbers....there is a gem in this for all of us. Her name is Ruby Carroll Brabbs and she was born today around 12:15pm, weighing 8 lbs 10oz and 21 inches long.



This is such a special moment for us because with only two months before we decided to start chemotherapy to dominate my Multiple Myeloma, which will inevitably make me sterile, we decided to roll the dice and see if the Guy upstairs had a blessing in store for us hidden behind all these dark and gloomy cancer clouds.

Some people say cancer is a gift. I am not sure exactly how I feel about that quite yet, but I can definitely say it helped forge a gem of a girl today and we will be forever grateful. Ruby is our hope and trust that life goes on after cancer, chemotherapy and stem cell transplants. Every child is a miracle and this one is no different....and extra precious to us in light of the circumstances.

Monday, April 26, 2010

Myeloma Mondays #12: Deborah from Tiburon, CA

Where were you born and raised?
  • Cleveland Ohio
Where do you currently live?
  • Tiburon, California
When were you diagnosed and how old were you? (example: 8/8/08 - age 28, IGG Kappa)
  • October 31st, 2009. 58 years young
Did you know what MM was prior to diagnosis?
  • No.
Is there anyone else your in family with MM?
  • No...I think my mother may have had it.
What led to your diagnosis?
  • I had been sick for over a year. I went to every doctor I could think of, but everyone turned me away or passed me on to someone else. My Obgyn finally gave me the right test, and told me I would have to see one more doctor to see what was wrong with me. She knew.
How many times were you referred before actually being diagnosed?
  • At least 7 times.
Where have you received treatment?
  • Kaiser Hopsital in San Rafael, Ca.
Explain your treatment history
  • 11/2009 Velcade 2x weekly.
  • 11/2009 Orivia (sp?) 1x monthly
  • Starting Autologous transplant 5/2010
Why did you or your doctor choose a specific treatment?
  • Because I have chromosome damage.
What has been the side effects of the different treatments?
  • Dizziness, confusion, nausea, vomiting, dirrarhea, loss of appetite, weight loss (yay).
What has been the hardest thing about your MM journey?
  • Having to go to the hospital 3x a week. It's like a job!
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • Stay positive, find out what works for you, and accept the help you need!
How have you been able to stay positive a.d encouraged in your MM journey?
  • Support from loved ones.
After being diagnosed... What perspective was changed the most?
  • That people who don't find an answer, should go back and find one!
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • Besides being raised in a smoke-filled home, no.
What MM sites or blogs had you found good information from after diagnosis?
  • This one!
***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Tuesday, April 20, 2010

Well. That was fun.

We are home. Phil's counts came up very quickly early in the week and they kicked him out first thing this morning. We'll come back to share details of the entire experience later on but for now I wanted to let everyone know that Phil is doing amazingly well and is enjoying the freedom and fresh air. With his mask on, of course.

On the drive home we were saying that it really doesn't feel like he was in the hospital for two weeks. The days all blended together and it seems like this all happened over a really long weekend. I'm sure things might have been different had there been a major health emergency or something but for the most part things went as expected so there you have it. Long weekend.

The baby did not get the memo that today was her due date, so nothing to report there. But I'm hoping and praying that she decides to make her appearance by week's end.

I'm hoping Phil and I can muster up enough energy to do a video blog recap in the next day or two. In the mean time, thank you all for your prayers, encouragement and warm wishes. We appreciate it so much.

Monday, April 19, 2010

Myeloma Buddies!


I just have to tell you guys about these adorable Myeloma Buddies, created by Feresaknit... my kids have new favorite loveys and the proceeds benefit multiple myeloma research. Who doesn't love handmade? Plus, you know-- CUTE! Go ahead and getcha one.







Many thanks to Feresaknit for her hard work on these little custom cuties.

Myeloma Mondays #11: Tim from Fairlawn, NJ

My name is Theresa Conklin and my husband Tim was diagnosed with MM in Aug 2007 and this is his story.


Where were you born and raised?
  • Elmwood Park, NJ
Where do you currently live?
  • Fair Lawn, NJ
When were you diagnosed and how old were you?
  • August 2007, 2 months after my 40th birthday, Stage III, Protien 8000, 50% of plasma cells in marrow.
Did you know what MM was prior to diagnosis?
  • No
Is there anyone else your in family with MM?
  • No or any other cancer
What led to your diagnosis?
  • Lower back pain, had tumor and compression fracture on L3
How many times were you referred before actually being diagnosed?
  • Was diagnosed pretty quickly. Orthopaedic called our primary doc with the results of the MRI who in turn called my husband to come in immediately for blood work and went for BMB the next day and to the oncologist 2 days later.
Where have you received treatment?
  • Hackensack University Medical Center, Myeloma Division under the care of Dr. David Siegel.
  • The Valley Hospital in Ridgewood, NJ
Explain your treatment history
  • Aug 07 thal/dex
  • Sept 07 12 rounds of radiation
  • Nov 07 Kyphoplasty to repair fracture
  • Dec 07 finished last cycle of Thal/dex
  • March 08 auto stem cell transplant
  • Aug 08 auto stem cell transplant
  • Every 3 months IV Zometa
  • Aug 09 started receiving vaccinations again
  • No maintenance drugs and have been off all meds since just after 2nd transplant
Why did you or your doctor choose a specific treatment (For example, to have a transplant or not have a transplant, etc.)?
  • Given Tim's age and how well he responded on thal/dex we thought it was the best chance for remission. Originally our doc gave us the option to do an allo for the 2nd transplant but he said he thought the auto would be better and we decided that we didn't want to take the risk with an allo anyway.
What has been the side effects of the different treatments?
  • Surprisingly my husband has a rock iron stomach and the only side effect was heartburn and neuropathy in his feet. Even through both transplants his only complaint was heartburn. Doctors would come in and laugh when Tim said he felt fine except maybe a little tired and only complaint was heartburn and that was it. All the other patients had a long list of ailments and they could barely eat and Tim ate all his meals.
What has been the hardest thing about your MM journey?
  • Telling our kids. We have 2 children ages 15 and 10. At the time our son was 13 so we told him once we knew what was going on but in the simpliest of terms and did not go into detail. Our daughter was only 8 and she knows that he has something wrong with his blood and had to get it fixed.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • Do your research and don't settle for just any doctor. We were lucky enough to find great doctors right from the start who truly cared and were there for us with any and all questions. Also don't be afraid to ask questions, make a list and bring it with you to your doctor appts.
How have you been able to stay positive and encouraged in your MM journey?
  • Through the support of family and friends. By reading other people's stories. My husband and I are and have always been the kind of people to joke around and we continued that through this journey.
After being diagnosed... What perspective was changed the most?
  • Don't sweat the little things, spend as much time with family and friends as possible, the laundry and cleaning can wait.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • My husband is a plumber
What MM sites or blogs had you found good information from after diagnosis?
***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Monday, April 12, 2010

Myeloma Mondays #10: Chuck from Tampa, FL


Where were you born and raised?
  • All over the place. My father was in the Air Force. I was born in Enid Oklahoma. I lived in Florida, The Phillipines, Japan, Ohio, Indiana, New Jersey and Illinois all by the time I was 18. I call Illinois home.
Where do you currently live?
  • Tampa, Florida
When were you diagnosed and how old were you?
  • Diagnosed 11/19/2008 - age 46 - IgG Kappa
Did you know what MM was prior to diagnosis?
  • Heck no!
Is there anyone else your in family with MM?
  • No
What led to your diagnosis?
  • broken clavical - disc golf
How many times were you referred before actually being diagnosed?
  • 0
Where have you received treatment?
  • Moffitt Cancer Center, Tampa, FL
  • 11/??/2008 - clinical trial - CVDD (cyclophosphomide, Velcade, Doxil, Dexamethasone) + monthly zometa
  • 3/2009: Completed 6 cycles of CVDD
  • 6/2009: Autologous Stem Cell Transplant
    We achieved very good partial response and am on no maintenance therapy.
    Initial IgG - about 5900
    Initial M-spike - 3.9
    High Protein in Urine
    After Induction Therapy
    IgG -normal
    M-spike - 1.3
    High protein in Urine
    After SCT
    IgG - Normal
    M-spike .2
    Urine protein - normal
    Freelite ration - normal

    So, currently no maintenance therapy with the exception of Acyclovir 2x day.

    All numbers have been stable since transplant. When the numbers start rising again (by a factor of about 25%) my Doc will recommend to resume treatment.
    Right now, quarterly testing- Urine/serum/..
Why did you or your doctor choose a specific treatment?
  • I believe in clinical trials. All the drugs in the trial are already approved for myeloma treatment. I'm relatively young and with two teenage boys, this combination is relatively well tolerated which would allow me to continue to work and care for my boys.
What has been the side effects of the different treatments?
  • CVDD was well tolerated. I had no nausea, some fatigue, some hair loss. The Dexamethasone was not pleasant. I became irritibable and not too pleasant to be around when "crashing". But listen to my girlfriend and that's my normal nature! So, I don't know :) No issues with the Zometa.
What has been the hardest thing about your MM journey?
  • It's hard to tell if the initial shock and discouraging results of initial internet searches regarding what to expect, was harder than living with this disease and never knowing if the next test will bring bad news.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  1. Stay positive.
  2. Don't believe everything you read.
  3. Get involved. The International Myeloma Foundation, The Multiple Myeloma Reasearch Foundation, The Luekemia Lymphoma Society are great resources for all types of help.
  4. Stay informed.
  5. Question your Doctors about anything and everything until you are comfortable.
How have you been able to stay positive and encouraged in your MM journey?
  • Stick my head in the sand and pretend I don't have Multiple Myeloma! Now that's not too realistic, I know. Continue to work, raise my children, love my girlfriend, maintain hope that cure will become available while I'm still around to get it.
After being diagnosed... What perspective was changed the most?
  • Living with the knowledge that most likely I'll die earlier than I assumed.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • Yes. Cornfields as a teenager. I remember running behind the mosquito fogger (DDT I presume) as a child.
What MM sites or blogs had you found good information from after diagnosis?
  • MMforDummies, Nicks Myeloma Blog, Living with Multiple Myeloma, IMF, MMRF, LLS
***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Thursday, April 8, 2010

Guess who came to visit?

We got the okay to bring Ocean up to visit Phil last night. They were both beside themselves with excitement and Ocean just made himself right at home in Phil's hospital bed.



This bed isn't like our beds at home. It has a lot of stuff behind it.

Ocean packed some pretzel sticks and string cheese into his backpack for the two of them and they snacked while watching Fly Me To The Moon on Netflix. Ocean's favorite part of the whole night was adjusting the hospital bed over and over and over, until Phil started to feel queasy.

When we got ready to leave Ocean asked if Daddy was coming too. I told him no, Daddy has to stay at the hospital for a few more days, but maybe we can come back for another movie night soon. Then I gave him a sucker because I felt bad.

We haven't ever, not once, said to the kids that Phil is sick. We never use the word "cancer" around them. They are both very young and most of this is way over their heads. Ocean is also at the age where he is starting to become aware of dangers and he struggles at bedtime with fear of the dark, fear of being alone, fear of monsters. I don't want to add any more fears to that list.

So when I was buckling him into the car and he blindsided me with

Is Daddy still sick?

I froze.

I closed his door and walked around to the driver's side. I took a deep breath. "Don't over-share," I reminded myself. (I tend to do that.)

Ocean: Is Daddy still sick, Mom?
Me: Daddy is still sick, but he's getting better.
Ocean: Where did he get his germs?
Me: Daddy's kind of sick doesn't have germs. Daddy's kind of sick just makes him feel tired. That's why he gets to rest in his hospital bed for a few days. So he can get better and play soccer with you.
Ocean: This sucker is gooooood.

As we were exiting the parking structure Ocean asked me what I was going to do with my parking ticket. I told him I have to give it to the lady and pay some money. He asked if I have a lot of parking tickets and I told him I get one every time I come, which is a LOT.

But Mommy, you should be grateful for what you already have.

As if I'm hoarding tickets. I smiled, and told him that I don't get to keep the tickets, that I always have to give them back when I leave. But that I am, in fact, very grateful for what I have. He said lots of parking tickets could make a cool art project. I agreed.

This morning Ocean wanted to come back and see Phil again, and he got kind of teary-eyed when I told him he couldn't. But my mom gave him a new Diego coloring book and he perked up. And yes, I am aware that we are totally trying to buy his happiness right now. Desperate times, people.

I got here this morning and Phil had already walked three miles. He also asked for a stationary bike to be brought to his room and it just arrived. I told him to take it easy and he looked at me blankly and then said, "...Yeah."

His counts are bottoming out and his immune system should be gone tomorrow. He has a nurse who is working to get Phil's counts back up so he can get out of here quickly (safely, of course... with lots of protein shakes, moderate (ha!) exercise, the right anti-nausea meds given at the right intervals with food) and it's exactly the motivation that Phil needs, as you can imagine.

I'll leave you with a little video that the Brabbs men shot last night.

video

Wednesday, April 7, 2010

Stem cell transplant... check.

Yesterday Phil said something to the effect of, "Kicking cancer is pretty boring." I'm glad he brought it up because I was thinking the same thing, but who says that to a cancer patient? Not I.

We've discovered that Phil has a sensitivity to Compazine, so he's getting Ativan for nausea instead. This means he has been sleeping for at least the last 15 hours. Sleeping is better than the alternative.

The stem cell transplant was incredibly uneventful, as we expected it would be. There always seems to be a bunch of fanfare around The Transplant, but the truth is the real work is going to be done over the coming days, weeks and months as Phil's stem cells work their way back into his bone marrow. It took about a half hour from start to finish, and Phil dozed through most of it while the P.A. and I chatted about eating low on the food chain and running while in labor. You know, light topics. We were told the preservative they use tastes and smells like either fish, garlic, creamed corn or tomato juice, and so both of us were given mints to suck on during the transplant to help with the taste and smell. We were praying for tomato juice, but we got creamed corn. That was second on our list so not too bad, and definitely better than fish. I did get a great picture of Phil holding his bag of stem cells but I'm having technical difficulties and can't upload it. Of course. So that will have to happen another day. Perhaps tomorrow.

I spent the rest of the afternoon at the hospital and then came home to eat dinner and tuck the kids in. It was a very uneventful day. Unless you're Phil's bloodstream I suppose. There's quite a bit of straight awesome goin' on in there.

Something else really cool going on is this. I didn't know it was happening, even though Phil obviously did, and even though my dad coaches the swim team. No one tells me anything. There's probably a reason for that. Anyway, this is so very cool and Phil and I are very stoked to hear how it all goes.

Oh and another thing... we are totally out of wristbands. We removed the button on the blog last week in preparation for Phil's hospitalization since he and I personally mail out all the wristbands and we knew it would be impossible to get to the post office for the duration of his hospital stay. I'm sorry for the inconvenience and we'll let you all know once we've reordered and are ready to take that on again.

If anything cool happens I'll post again but for now you can safely assume the following:
1. Phil is still sleeping.
2. I am still pregnant.
3. My mom is mediating an argument of some sort between my children.

'Night!

Monday, April 5, 2010

Myeloma Mondays #9: Nick (our friend) from L.A.

Where were you born and raised?
  • Santa Rosa, California -- a town of about 150,000 people about 50 miles north of San Francisco.
Where do you currently live?
  • Los Angeles
When were you diagnosed and how old were you? (example: 8/8/08 - age 28, IGG Kappa)
  • I was diagnosed in October, 2008 at the age of 40.
Did you know what MM was prior to diagnosis?
  • Not a clue. I remember my primary care physician, who spotted elevated total protein in my blood during a routine cholesterol test, called to say "I've found something abnormal. I could be one of two things. I could be a condition called MGUS, or it could be something called Myeloma." I said "anything that ends on 'oma is bad." That was the first time I'd heard that word.
Is there anyone else your in family with MM?
  • No.
What led to your diagnosis?
  • Total protein >8 led my primary care physician to refer me to a hematologist, who did X rays and bone marrow. My other blood counts were all normal -- white count, hemoglobin, platelets all fine. Upon diagnosis, this struck them as odd. They were very surprised when the bone marrow came back 70% plasma cells.
  • My M-protein at the time was around 3.8 but they still thought it might have been MGUS prior to the bone marrow analysis. Meanwhile, I had experienced pain in a shoulder and pain in a rib. I had attributed this to turning 40...but of course I now know they were lesions. Goes to show you X-rays are useless. I now know osteolytic lesions won't appear on an X-ray until 70% of the bone is destroyed. Two months after that X-ray, I had a PET scan that revealed well over 100 osteolytic lesions. Would have been nice to see better diagnostics from the get-go!
How many times were you referred before actually being diagnosed?
  • I was diagnosed on the first referral. The fact that I was diagnosed the way I was permitted me time to research all the different treatment options, and this was very important. I received a second opinion at City of Hope here in Los Angeles from Dr. Stephen Forman, who is the head of their transplant program. He is one of the warmest, brightest human beings I've ever met and is a wonderful doctor. I received a third opinion from Dr. Ken Anderson at Dana Farber in Boston, who is one of the leading novel agent doctors in the world. Notably, the bone marrow slides that I received from the initial lab were done incorrectly and indicated different abnormalities in the marrow than was actually the case -- although the amount of plasma cells was correct. And I don't think any of these three consults relied on anything more accurate than the old-fashioned (by now) FISH tests for deletion of Chromosome 13, which I now know is relatively meaningless as a marker. I received my fourth, and most important opinion, from Dr. Bart Barlogie, who quite literally has saved my life. More on him below. After these three formal consults, I also spoke with Dr. Brian Durie (at Cedars in LA, and also with the IMF), Dr. Robert Collins at Southwestern in Dallas, and spoke again with Dr. Ken Anderson as I was forming me "decision tree" of what to do. In addition, I spoke with Kathy Giusti of the MMRF, the chief medical officer of the MMRF, and three people that had been treated (two in Arkansas, one elsewhere). I had also scheduled calls with Dr. Heather Landau at Sloan Kettering, Dr. Morie Gertz at the MAYO Clinic in Minnesota and Dr. Sundar Jagganath at St. Vincent's in New York, however I decided to commence treatment before I spoke with any of them -- and I had already gotten their likely viewpoint expressed in the spectrum of others that I collected. I remark constantly that I was very fortunate to have the time to do this research. And I am also fortunate that my diagnosing Hematologist -- who is pretty conservative and favors a control-the-disease approach similar to MAYO -- recommended that I seek out all opinions, including Barlogie (who is the most aggressive) and Dr. Jim Berenson (who does not believe in transplants). I did not speak with Dr. Berenson and I'll leave it at that.
Where have you received treatment?
  • I began treatment at the University of Arkansas, Medical Sciences in February of 2009, under the direct care of Dr. Barlogie.
Explain your treatment history
  • 2/09: induction cycle consisting of 4-day continuous administration of four chemo agents (Cisplatin, Adriamycin, Cyclophosphomide and Etoposide) concurrent with 4-day cycle of 40mg Dexamethasone, Velcade (1mg/meter squared) on days 1, 4, 7 and 11 and Thalidomide (200mg) daily (can't recall the precise cycle but I believe a week).
  • 3/09: vertebroplasty on four broken vertebrae.
  • 4/09: autologous stem cell transplant accompanied by fractionated high-dose melphalan (50mg/m2 per day over four consecutive days), with velcade on days 1, 4, 7 and 11, 40mg dexamethasone x 4 days, and thalidomide 200mg/day (again I believe for a week)
  • 5/09: "bridging" therapy between transplants consisting of one four-day cycle of dex at 40mg/day, thalidomide at 100mg/day for about 10 days (I stopped because of a bad rash on my face)
  • 5/09: second autologous stem cell transplant, same deal as the first
  • 6/09: "bridging" therapy per the previous bridging therapy
  • 7/09: consolidation cycle of chemotherapy, consisting of dose-reduced (75% of original dose) amounts of the four agents from induction, plus 40mg dex x 4 days, plus thalidomide 200mg x I believe a week.
  • 9/09 and ongoing for the next three years: 1mg/m2 Velcade weekly, 20mg of dex weekly, 15mg of Revlimid days 1-21 with 7 days off after that.
  • 10/09: One course of Zometa
  • 1/10: Another course of Zometa, Velcade upped to 1.3mg/m2, Dex reduced to 12mg weekly.
Why did you or your doctor choose a specific treatment?
  • In the interest of not writing a book here, I will try to summarize briefly. Dr. Barlogie believes Multiple Myeloma is curable in approximately 55% of newly-diagnosed patients. He has developed his treatment, called Total Therapy, over a period of 20 years and has remarkable data supporting its success. He has seen more Myeloma patients than anyone in the world and has worked singularly on this disease for the 20 years that he has run the Myeloma Institute for Research and Therapy at UAMS. Prior to that, he was at MD Anderson working on Myeloma, and prior to that he worked at St. Jude with the people that developed Total Therapy for childhood leukemia, which was originally a deadly condition presumed to be without cure and which currently has a 90% cure rate. The concept of Total Therapy, in a nutshell, is to take every agent known to be effective against the disease and hammer it into submission by throwing it all at the disease in rapidfire fashion: the carpet-bombing, kitchen-sink approach. Thereafter, one keeps the body toxic for the cancer for a long enough period of time that all the cancerous cells -- including the progenitor cell that started the whole mess -- die. The first thing that is done at Arkansas is a bone marrow analysis that is compared with a very detailed regression model based on thousands of tissue samples, where over 80 genes are analyzed and based on this, and on the reaction of the bone marrow to a test dose of Melphalan and Velcade (which occurs before primary therapy began on the timeline above), they index patients into two risk categories. 85% of patients are low-risk, whereas 15% are high-risk. The outcomes for low-risk myeloma are decidedly better, and the cure fraction there is approximately 75%. Of the 85% of patients that are low-risk, approximately 60% achieve complete remission (in UAMS terms, this means normal bone marrow, no monoclonal protein under immunofixation, normal light chains). Of this 60% amount, 90% remain in complete remission five years later. Based on the "cure curves" observed over 20 years, after six years, the disease is all but certain not to return. Based on this, I built a decision tree. I could go for a control-the-disease approach (induction with VRD, RD, TD, etc. depending on the doctor, followed by a single ACST, and then see what happens) or I could try to cure it. My expected outcome for control was a recurrence in five years. My expected outcome for cure was 55% that I'd be cured, 45% that I'd have recurrence in five years. Treatment related mortality at my age was not a concern, but for older patients they should be aware that TRM in Arkansas is about 3%, versus about 2% for more conservative treatment. So then, I asked the other doctors (who are not aggressive) what the potential downsides of Total Therapy. One doctor said they would be concerned about the ability of bone marrow to sustain normal counts after the two transplants. I asked Barlogie and he said that that was not an issue, that they "never seen that" in over 1200 patients. Another doctor (my original hematologist, actually) was concerned about the long-term leukemic effects of the chemo drugs. Barlogie told me that in conjunction with Sloan Kettering, they studied this but after 17 years they never had an incidence of it so they stopped tracking it. Another doctor was concerned about the amount of Velcade used -- although Velcade has by now become routine therapy just about everywhere. After that, it was a pretty easy decision. The only real risk would be that I'd have used up most of the therapies that are effective, so if the Myeloma were to return, I would need new drugs at that time to beat it back down. Next generation Revlimid (Pomalidomide, now approved and in use) and next generation Velcade (Carfizomib, coming out in 2011 but available in trials today) are the answer to that question. So off to Arkansas I went.
What has been the side effects of the different treatments?
  • Very easy to tolerate, generally. No vomiting whatsoever. No mouthsores from the transplants. I did have constipation (my fault) and diarrhea (unavoidable). I lost my hair. I was exhausted for about three months. All things considered, pretty trivial compared with the side effect of DEATH which is the likely outcome from this disease in short form if not treated! In maintenance, I endure a bit of tiredness, trouble sleeping (helped with an Ambien) on Dex nights, leg cramps, and frequent colds. I'm dealing with the last two side effects, but they are manageable.
What has been the hardest thing about your MM journey?
  • I should have started treatment a month earlier. I felt something hurt like heck in my lower back in December. Dr. Forman told me it was probably just a ligament rolling over a bone -- nothing to worry about. Well...turns out it was a vertebrae being destroyed. I lost four of them to the cancer, and by the time I started treatment the calcium in my blood was hurting my kidneys, I had early-stage anemia, etc. I've lost about 1.5" of height as a result of vertebral compression and that is a pain. Honestly, that's been the hardest thing. I'm hoping to have back surgery in May to correct it.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • RESEARCH YOUR OPTIONS!!! DO ***NOT*** JUST GO TO ANY OLD DOCTOR. FIND ONE OF THE BEST IN THE COUNTRY, regardless of your opinion on the "cure versus control" debate.
  • If you are young, otherwise healthy, and newly diagnosed (and I say this with great love for you...) it is a huge mistake not to at least go to Arkansas for testing, and to consider it for treatment. They have this down better than anybody else. Interestingly, in a little over a year, others are catching on. More aggressive options are emerging (including the one Phil is doing in Michigan) with a focus on cure, not just control. City of Hope now does maintenance therapy, which they didn't do when I was diagnosed. Velcade is now routinely used in up-front therapy, which was almost heretical a year ago. Arkansas will be proven right. Of course, better yet will be the day when a much simpler, less toxic and less invasive alternative becomes available. I would love to see Bart put out of business!
How have you been able to stay positive and encouraged in your MM journey?
  • I never believed I was going to die from this. I believe in Bart's data. I took comfort in learning as much as I could, being my own advocate, asking questions, becoming an expert, making an informed decision, and ultimately putting my trust in a man with a vision backed up by data that I found resonant.
  • I reconciled myself that I was sick, and that I was going to have to go through a lot of horrible stuff that I wouldn't have to do if I was well, but I didn't want to die, and it was simply something I would have to do.
  • I focused singularly on my health -- I did not work at all during my treatment.
  • I visualized that every time I felt bad, I knew it was because the cancer was dying.
  • I also recognized that as a patient, all i could bring to my fight was positive energy. I would not be defeated. In your parlance, Phil, I was dedicated to DOMINATE! :)
After being diagnosed... What perspective was changed the most?
  • I try not to be bothered by the little things as much. You wake up breathing, everything else is icing!
  • I try not to be overly stressed -- I believe stress is what caused my immune system to be tweaked. I am still hard-charging, but I'm also trying my best to be happy with what I have to be happy with. :)
  • I know now the value of a simple phone call or email to a person to let them know they are thought of -- the littlest ones provided strength. If you are ever considering that it's awkward to send a note, or call, or whatever to a person battling cancer -- just do it. If they don't want to talk, they won't. But more often than not, simply knowing that they are thought of makes a difference!
  • Lastly, I believe it is defeatist to live every day like it is your last -- but I do believe you should live every day to the fullest.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • Nope.
What MM sites or blogs had you found good information from after diagnosis?
  • There have been many more blogs that have arisen since the time of my diagnosis. At that time, there were only a few, and unfortunately even fewer with details of aggressive therapy (versus lots of alternative therapy, etc.) I am grateful to google, through which I found Ms. Lois Bertoni, who underwent treatment in Arkansas and has been cured of her Myeloma. I found her through a forum on a website which I believe is highly critical of Arkansas. Nonetheless, that got me my start.
  • At the risk of being self-serving (though my goal is to serve others with my blog) I have maintained a blog of my own at www.nvdmyeloma.blogspot.com. If nothing else, it is a faithful, day-to-day (more or less) painfully honest accounting in detail of my journey, from diagnosis through every day of treatment. For those considering a stem cell transplant, or considering Arkansas, I think it would provide tremendous value.
***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Sunday, April 4, 2010

It kinda feels like we're preparing for the End of Days. And you guys are kind of like Jesus. Or Spiderman. Depending on your theology.

Over the last few months there has been this wacky combination in the Brabbs household of nesting in preparation for the baby's arrival, which is clearly hormone-driven, and also of trying to get all my ducks in a row for Phil's transplant, which is purely panic-driven. For those of you who may not be following the dates very closely (and we barely are, so that's probably most of you) Phil should be released from the hospital, assuming all goes well, on my due date-- April 20th. Given my track record it's likely I will go past my due date (I was 15 days past with Ocean and 10 with Iris) so we have that going for us but since labor is unpredictable we realize how truly close we're cutting it here.

Neither of us is a big planner so the stickiness of this particular situation which obviously called for lots of forethought and rallying of the troops sent me into a tailspin. What would I have done, then, without all of my dear friends who have worked tirelessly to fill my freezer with meals so we would be prepared for the overlap of Phil's hospitalization and subsequent isolation, and the baby's arrival? We are also receiving dinner twice a week from friends and Phil's co-workers which has eased my burden tremendously. My parents, my mom in particular, have become my caregivers, as well as caregivers to our kids-- they are here multiple days every week, taking care of the kids while we're at the hospital and bringing milk and bread when we run out. We have friends who take our kids to the park for us since I can barely walk, much less run after a rogue child, and Phil is exhausted... friends who have cookie bake-offs just so we can judge the results... friends who created boxes of crafts and games for our children once Phil comes home and we have to limit contact with other people while that immune system is being rebuilt... friends and family who call to check on us and who encourage us through this blog and email and Facebook, even if they don't quite know what to say... friends who dye their hair blue and then shave it off... friends who pray... friends who stuff envelopes full of Dominate wristbands... friends who babysit so we can get out of the house when reality becomes too real and life begins to close in... friends who made my birthday super-special when-- amidst the chaos-- I forgot I was even having one... friends who clean our house... friends who have lost their hair due to chemo and bring over a satin pillowcase because they know it will be more comfortable... friends who have been there with us since all of this began, who promised to be there for the long haul, to do whatever we needed them to do, to see us through this. I mean... really. Really? How wonderful are all of you? There are no words. And to simply say Thank You just doesn't do enough to convey our gratitude.

Here we are just 3 days away from transplant and all of this preparation and planning that was primarily undertaken by others-- not by me, oh no, because I was mostly over in the corner freaking out-- has allowed me to have such tremendous peace about how Ready we are in the face of Ready or Not. We've taken one day at a time throughout this process so I haven't thought too much about what the next few weeks will look like but I dared myself to take an imaginary peek into the near future and from my fictional crystal ball it looks like we just might make it. That's not a testament to anything but the grace of God and the goodness of the people in our lives. Because we... we are a mess, dudes. You all, you're like the hero at the scene of the accident, who gets the adrenaline burst that allows her to flip a car over in order to save the person inside. We need to flip over a car or two, but without all of you it couldn't happen. So that makes you guys heroes. Which, at least in a home where Spiderman and Jesus are often confused for one another, is a really, really big deal.

So. What happens now?

Tomorrow Phil gets a Melphalan infusion. It's supposed to be kind of nasty so they'll give him anti-nausea meds up front to make sure he doesn't get sick. He'll also have to chew on ice and popsicles to drive the blood circulation away from his mouth and throat, since Melphalan is notorious for giving mouth sores. (I'm going to bring our own cooler with fruit popsicles since I'm kind of a freak about food dyes and HFCS.) And I'm fully anticipating the challenge of trying to keep Phil awake while on sleep-inducing anti-nausea meds in order to make sure he's keeping his mouth cold enough. For FOUR HOURS. Pray for me.

We go home on Monday night and then back to the hospital on Tuesday afternoon, where Phil will check in for his transplant. I think there will be lots of Netflix watching on Tuesday night.

Wednesday is the actual transplant, which we hear is quite anti-climactic. More about that later.

Tonight we're taking it easy after a lovely Easter weekend with Phil's parents yesterday and my parents and sister today. Iris's sugar crash happened early so she is already in bed, and Ocean will be close behind, once he and Phil finish their Movie Night.

I am in the living room with the door open, enjoying the sights and sounds of spring... and a cookie that is a definite contender in the bake-off.

My hope is that you all feel as loved and cared for as we do on this Easter weekend, and that Peace is as close to you as your next breath.

Friday, April 2, 2010

Haircut....

Phil's hair began falling out this week so he decided it was time to take the clippers to it. The kids wanted to help, and then they both wanted to shave their heads. I told Ocean we would talk about it later, and told Iris sorry... it took two years for her to have ANY hair at all and I don't really want to start over.

Here's a video of the action. My favorite part is when Ocean says, "You look like you, with all your hair off." And Iris says, "You look beeee-YOU-teeful!"

video