Saturday, February 27, 2010

You're about to pop!!!

I feel Cassie's pain when we go out in public. At the UMHS Cancer Center today every individual we passed by made a snap judgement of where they thought Cassie was in her pregnancy and all were two months off! Comments like, "Any day now...huh?" or "You are about to pop!!!" could be heard every step to and from our destination. I'll try to post a shot of her with the little girl who still has roughly 8 more weeks of cooking.

In terms of what could have been my last Velcade infusion at UMHS for a while was very uneventful. What started out as a roller coaster ride after the first two cycles due to all the side effects of the chemotherapy, eventually leveled off into peaceful, kid-free dates at the cancer center.

More on the non-chemo/cancer front, Ocean turns 4 on Sunday! To think he was just 2.5 at diagnosis is unbelievable to me. This kid is hilarious, loving and pretty brilliant. He has really grown attached to his Daddy over the last couple of months and I am really enjoying every moment I get to spend with this little bugger.

Chemo Cycle #7 of RVDD ends on Monday and we are still trying to work out the timing of the transplant. No real answers yet on whether we can move it up to be a month after chemo ends, but that still is our desire.

Wednesday, February 24, 2010

My life could be a country song. Or else it's just hormones. Either way... ugh.

It's been ages since I've blogged here, or anywhere for that matter. If you are unlucky enough to know Pregnant Cassie you will find that I get really reclusive, negative and sullen when I am with child. And this is the point in the pregnancy where it gets really bad and I pretty much try not to talk to anyone because I'm probably not going to say something positive. I've mentioned before that Phil is the Tigger and I'm the Eeyore. I'm all, "Oh dear God! The sky is falling!" and he's like, "Awesome! I've always wanted to touch the stars!" When I'm pregnant, running out of milk is akin to the apocalypse. You can imagine I must be a delight to live with.

Since Phil has taken over the blogging here lately I've just been laying low, nesting my face off while simultaneously breaking up preschool brawls. I know many of you come here because of the positive, encouraging way in which Phil expresses himself and the way he lives his life. I haven't wanted to poo on the parade, because lately I'm so the antithesis of the good vibe he's got going here.

But today I was thinking that probably most of you normal people operate somewhere right in the middle of Catching Falling Stars and Milk Apocalypses, and also I began this blog as a way to record this entire experience... good, bad and ugly. It just so happens that right now, things are a bit ugly.

As Phil mentioned in his most recent post, the dates for transplant have been scheduled and they coincide with the baby's birth. We're over the whole wanting Phil there for the birth thing, because his long-term health is obviously more important than being present for that moment, but this poses another dilemma. If I have the baby before transplant there's just no way I'll be able to be with Phil during his inpatient stay at the hospital. As Phil mentioned, we were not at all happy to learn that everything had been scheduled and no one spoke with us about it first, and then when I called back, trying to get some of the dates moved up, I got absolutely no where. Frustration. Annoyance. Tears.

We've grown accustomed to our interactions with our amazing myeloma medical team, who go above and beyond (I mean, truly... to the point you wouldn't believe) making sure we're all on the same page and that we're comfortable with everything and they let us know we're part of the process here. Plus they ask about me and the baby and the kids and our LIFE and they really care about who we are, not just the myeloma, you know? So to go from that to a scheduler and a coordinator who seem apathetic to our needs and our situation is frustrating at best and infuriating at Pregnancy Level. (And let me just say I realize that everyone in this particular situation has special concerns and extenuating circumstances and in no way are our needs more important than anyone else's, but a little compassion goes a long way when your entire job is to work with people like us, you know?)

Also, while we're on the subject of bad customer experience, the hospital billing department is a big fat jerk. But our insurance company makes them look like fuzzy little kittens.

On top of all of this, it seems like the sky is falling for several of my friends right now also. Like unbelievable tragedies. And then on Friday my parents' Golden Retriever, Libby (who was my dog until I moved out), died unexpectedly. So it feels like my already broken heart might never get a chance to mend.

Despite the heartache, there's a lot to look forward to, and a lot to be thankful for. Our family and friends' dedication to us during this time has been unbelievable. We have meals coming every week, our neighbors shovel our sidewalk, my parents keep the kids two whole days a week during infusions, entire churches and communities are praying and pulling for us, and my friends and I are beginning to brainstorm our care once the whole transplant/birth situation unfolds. We are truly not alone, and are so dependent upon the people who have made it their business to be in our business. Like Phil has said, how do you even come close to repaying that?

So I know it's not the end of the world, even though right now it feels like it should be. Or could be. I know one day life won't be this complicated or painful or exhausting. But it's nice to know that when things have completely fallen apart we're enveloped in the support of our loved ones who hand us tissues and help us sort through the mess.

I hope you're all staying warm and toasty and that your skies are blue and sunny.

Tuesday, February 23, 2010

Stupid Cold

I caught a cold this weekend from my about-to-be 4 year old son. Major symptoms include headache and the inability to connect two thoughts in my brain. No cough, sniffles or sore throat at this point. I am hoping to be on the upswing, or at least enjoy the two back-to-back Dex days as a way to feel productive.

Not only did I catch a cold....but so did Ann Arbor. We got dumped with 8+ inches of snow on Monday. There's nothing like shoveling your snow-packed sidewalk after half the neighborhood has already walked on it. It makes me want to put orange cones up right after a snowfall or booby trap the whole thing. The only issue with the latter is that my 60-year-old single lady neighbor may fall victim to my evil ways while being moved by compassion to shovel our sidewalk for us. That would be bad...

Changing topics, we got dates for all the pre-testing stuff that needs to be done leading up to stem cell collection, and the timing of everything pretty much sucks. Our simple and very emotional response was "you've got to be kidding me." Chemo treatment ends on March 1st and we were told transplant would be around the the third week of April which coincides with our baby's due date. I am new to this part of the process, so I am trying to be patient and understanding, but they should have given me the dates when my eyeballs didn't feel like they were going to pop out of my head because of this cold. I still have some hope that we can condense the schedule and get things going at the beginning of April which would allow Cassie to be with me during and after transplant. More to come....

To end things on a positive note, I had a delightful conversation with a couple up at the Cancer Center today. They drive in from Flint, MI for treatment and are a joy to talk to. They are now sporting a couple of Cancer Kicker bracelets and their journey will be posted in an upcoming MM Mondays.

Monday, February 22, 2010

Myeloma Mondays #3: Jodi from New Jersey

Background info:

I am 45 years old, married (20 years this year) and have 3 children. My daughter is 17 and our sons are 13 and 9. I considered myself in fairly good health. Never really sick enough to go to the doctor. Really bad about having an annual physical. I have had lower back pain most of my life courtesy of bulging discs. It should also be noted that I live approximately 3 miles from the Oyster Creek Nuclear power plant in New Jersey and have for the past 20 years.

As I look back over the past year, I can probably find a multitude of symptoms that I ignored. I was never one to go to the doctor unless it was absolutely necessary. Obviously, no one symptom was ever bad enough to get me in that office. Plus, we had other things going on. In May, 2009 my husband was diagnosed with thyroid cancer. As horrible as the "C" word was then, I remember telling him that if you are going to get cancer, that was a "good" one to get. Everything was contained within his thyroid and in June, 2009 he had the thyroid removed. He received radioisotope therapy in early August for which he was isolated from us for 5 days. His treatments were successful.

As for me, May, 2009, was also not a good month. I began having neck pain. I figured I had just slept the wrong way, twisted it, etc. I finally went to a chiropracter because I was also having lower back pain. An MRI showed that I had a 30% compression fracture at C7. At this time though, no one was suspicious of anything and called it a fluke. Because of my husband's illness, I put off doing anything. The pain was getting better, so I figured, why bother?

August, 2009, right before my husband went back to work, I took my daughter, Sarah, and myself on a short cruise to the Caribbean. She would be starting her junior year in high school that September and already had plans to travel the following summer to Germany with her class. This would have been the only time we could go and it was something I always wanted to do with her. Regardless of what people say about the teenage years, we have breezed through them with Sarah. She may be daddy's little girl, but she is my buddy. So we left the boys at home and went off to do some serious suntanning. Halfway through the trip, my lower back was in agony. Apparently I was starting to fracture on this trip and I am grateful I did not end up in a Mexican hospital.

When we got home from the trip, I made an appointment with an orthopedic. Sept, 2009, I went and had more x-rays done. It was the orthopedist who diagnosed the partial compression fractures at L2-L3. He also ordered bloodwork, another MRI and a CT scan "just to be on the safe side" was how he put it. I could tell by the look on his face that he didn't like what he was seeing.

I never made it for those tests. Three days after the orthopedic appointment, I collapsed on my kitchen floor with excruciating lower back pain. My husband had just left the house for work minutes before and I was the epitomy of the "help I've fallen and I can't get up" commercial. When I tell you that I would have rather given birth to all 3 of my kids at the same time than go through that pain, I would not be exaggerating. I literally could not get off the floor and Sarah had to call 911. Because I told them at the ER that I had an MRI and a CT Scan scheduled for the next day, they medicated me and sent me home. The pain meds helped until the next day when I went for the scans at a local imaging center. Basically I was stuck on a CT scan table and it took 3 people to get me off. I had the images done, although I still don't know how. The pain came back with a vengeance and it was back to the ER. This time, they decided to draw blood and do other tests. When my hemoglobin came back at 7.2 and a host of other labs were off, I was admitted. I received 2 units of blood that night and suddenly had a consult with a hemetologist. The next day I had a bone marrow biopsy and then my world fell apart. I will never forget the look on the doctor's face or his words after the biopsy. He simply said "You have multiple myeloma. It is not curable." Nothing like softening the blow. Dr. Gloom and Doom (his new name) left the room while my husband and I struggled with his words.

Now if this wasn't bad enough, I was still in excruciating pain from the fractures at L2-L3 and the C7 fracture was coming back to haunt me. No one really cared about the lower spine fractures because apparently the vertebrae had disintegrated at C7. I was told that I should not have been physically able to be up and walking around like I had been for months. Flash forward 8 hours later and I was in an ambulance on my way to Thomas Jefferson University Hospital in Philadelphia to have emergency neurosurgery done on my neck. Upon arrival at Thomas Jefferson, I had every test known to man done. This is when my body decided it didn't want to cooperate. My white count plummeted to 0.8 and my platelets decided to follow suit and I ran a fever of 103. There would be no surgery for me that night.

I spent the next 3 1/2 weeks at Jefferson while teams of doctors would come in and evaluate me. I had everyone from attendings and residents, to interns and students. I became a great case study for them. (I'm convinced that I'm written up in a journal somewhere.) I had to check for cameras to make sure that I wasn't on Grey's Anatomy because it sure felt that way. Because the surgery was on hold, I met with the new oncologists who started me on my first cycle of Velcade and Dex. I tolerated it well with no side effects other than the Dex rush.

Finally, on October 12 I was pronounced "healthy" enough for the neurosurgery. I underwent 5 hours of surgery and am now the proud owner of 4 small rods and 8 screws in my neck. As I told you earlier, I may never make it through airport security again. If I thought the pain in my lower back was excruciating, the surgery just brought the meaning of the word pain to a whole new level. I felt as though my head had been impaled on a pole. When I mentioned this to the neurosurgeon (AKA "the Sadist") he told me "that's because your head wasn't attached to your body." Four days later the "Sadist" discharged me home. I don't remember much about coming home. Yes, the drugs were that good. I spent the next few weeks in a hospital bed in my family room trying to recover.

November would start the 2nd cycle of Velcade. What I was very grateful for is that the doctors at Jefferson coordinated the chemo treatments with Dr. Doom and Gloom and arranged to have them done at a local hospital. That saved me a 65 mile trip each way to Philadelphia 3 days a week. After the 4th cycle of Velcade and Dex ended in late December, everything was stopped for 2 weeks pending a 2nd bone marrow biopsy. My original biopsy showed 70% myeloma cells in the marrow. This second biopsy showed that it had only dropped to 40-50%. Not as big a drop as hoped for although my IgA had dropped in half and was now 1620 down from 3300. The oncologist in Philadelphia wants the bone marrow to be under 20% in order to do a SCT. With that, we have now added Revlimid to the regimen and I continue on the Velcade and Dex. I will have another bone marrow biopsy in April after 3 more cycles of the chemo and if the numbers are good, we will be planning the SCT in May or June.

It was long recovery from the surgery. It is so hard to believe that 5 months have gone by since the initial diagnosis. I still have pain in my neck and lower back, but I am so grateful to be up and walking around. I went back to work this week for the first time and while it is going to take some getting used to, I feel productive again. I have also started physical therapy this past week. Ouch! I thought I was doing great until that torture began.

Lessons learned:
  • The obvious, take one day at a time. Learn to accept help. That was the hardest for me. When you are so used to doing everything yourself, (some would say I'm a control freak) it took me forever to say "yes, I need help." I'm still working on that one, but I've come a long way. It is ok to cry and be angry. I am much stronger than I ever thought. My friends tell me that I am too stubborn to let this get me.
  • I am grateful that I have had no debilitating side effects from either the chemo or the surgery. I am grateful I am able to walk. I am grateful for my husband who puts up with the Decadron mood swings. He thought PMS was bad until he encountered this! I am grateful that I have found blogs like yours to know that I am not alone in my journey. I truly have faith in the oncologist at Jefferson. He is originally from Seattle's Hutchinson Cancer Center which is a leading SCT site. So he brings all of that knowledge to the east coast.
  • On the down side, I am petrified of my bones fracturing again. I am on monthly Zometa to hopefully prevent this. I am petrified of the impending SCT. I don't want to lose my hair. I still have days where all I want to do is cry.
***To add your story to MM Mondays Story Time 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

Friday, February 19, 2010

Cycle #6 Results are in!

Here's a quick run down of what happened in Cycle #6 that is worth mentioning:
Although the M-Protein looks to be leveling off, that fact that my Kappa Free Light Chain continues to show great downward movement tells us there is still a lot to celebrate. Some Myeloma clinics put more emphasis on Light Chains than the M-protein, so either of these numbers moving down significantly is a good sign!

As for a quick update on the Baby Drama...through advice/thoughts/comments/prayer from friends, family and bloggers...I think we continue to realize that my health is #1 priority and whether the transplant happens when we want it to will play second fiddle.

There were several comments that I found very wise which said that our second daughter will be more interested and impacted in the moments I spend with her after birth, than the first moment she enters into the world. This really resonated with me and helped me put in perspective that what ever treatment I need and its timing is priority right now. There is so much to think about in terms of logistics with two kiddos at home and a pregnant wife, but thankfully we are sitting on a gold mine of support. I have no clue how we are ever going to repay all the care and generosity we have received to date, let alone all that is still to come. All I can say is thanks....maybe free Michigan Football tailgating in the Fall?????

Wednesday, February 17, 2010

Baby Drama Follow Up

I really like blogging because it can be both cathartic and also the comments/feedback really help push us along not only in terms of positive encouragement and laughter (Chip is the man at this), but we receive confirmation on things like the gut feeling we have to move forward with transplant prior to the delivery of Chica numero dos (demasiado Dora y Diego!). We really appreciate folks feedback (so thanks!), even if we don't solicit it. We have come to realize that the experience of others is huge in shaping our decisions; especially in regard to this Myeloma journey because we are truly dummies most of the time. Beyond that, we just love to get the thoughts of those who both know us very well and the quick passer by who found our blog in a google search.

Now to the Baby Drama follow up. We spoke with our rockin' awesome medical team (and this is why communication is key) and their initial concern was geared around me going to the labor and delivery while I was hospitalized and recovering from my transplant. We actually agree that if the baby comes during this time we will rely on modern technology to provide a live feed of the birth. We also learned that we actually need to take all of this up with our Bone Marrow Transplant (BMT) doctor who will manage my care during transplant and for 60+ days after. Good to know.

So it is still not clear how this is all going to fall into place, but we have learned over the last five years of doing life together (i.e. marriage) that for us, it is better to just put a stake in the ground that seems right at the time and then start knocking on doors to see how everything else falls into place (Hence, Dave W.'s recent comment made plenty of sense to me). The times when we felt things had to be a certain way we spent so much time and energy trying to knock down doors that would not seem to budge. Enough of that...

More to come after I speak with the BMT nurse today. We hope to get the ball rolling and get this BMT scheduled ASAP, which would be some time in late March I guess. That would mean my hair color will change early March for those who keep asking me when I am going to take the leap of faith and become a rock star.

Tuesday, February 16, 2010

Baby Drama

Being young with Multiple Myeloma presents some really difficult challenges. One of the biggies is that for men, chemotherapy followed by a stem cell transplant will most likely make you sterile. That means no more biological kiddos once this is all said and done. Knowing this, we took a chance at our two month window and got pregnant right away, which was pretty miraculous. The pregnancy is going well and it looks like the Brabbs kiddo count will make it to 3 (Ocean, Iris, Girl Child-to-be-named later).

Here's where the baby drama comes in to play. Due to all the additional rounds of chemo (RVDD), the first transplant is looking to hit a few weeks before the due date. The first issue with moving forward with the transplant before the birth of girl #2 is that we could run into the problem where Cassie goes into delivery at 38 weeks which would leave me behind to watch online courtesy of Skype or iChat. To add to the difficultly, just last week the Doc said that he does not think I should be returning to the hospital for the birth immediately after transplant due to my lack of immune system. Therefore, their suggestion is that if I want to be there for the birth, then continue to soak in chemotherapy (RVD) until the baby has arrived and then go in for my bone marrow transplant. Today we meet with Dr. J and we really want to see whether or not I could go up just for the delivery in my space suit and then return home.

The latter option seems much more difficult on our family given that Cassie will be caring and nursing a newborn while her hubby is on his back a few miles away at UMHS. My preference would be to get the transplant out of the way and start the recover process before the baby has arrived. There is definitely no right answer here and unfortunately for us most people diagnosed with MM are in their 60's so there isn't much to lean on in terms of folks who have gone down this path before.

Two roads diverged in a wood, and I— I got tossed down the one less traveled by, And that has made for a roller coaster of a journey.

What to do....????

P.S. Today's stars Cycle #7 of RVDD...time to return my 24 hour Pee-Pod

Friday, February 12, 2010

Myeloma Mondays #2: Tim from Essexville, MI

Each "Myeloma Monday" is going to be devoted to sharing the MM journey of folks who continue to dominate. I only wish that I would have had a bunch of these stories at my disposal when I was recently diagnosed; but regardless, I am glad they will be posted for those who will be diagnosed in 2010 and beyond.

Today's Myeloma Monday is brought to us by Tim Marciniak, 41, from Bay City, Michigan. Bay City happens to be my mother's hometown, so much love to Tim and his family!

Where were you born and raised?
  • Born and raised in Bay City, MI
Where do you currently live?
  • Currently live in Essexville (borders Bay City)
When were you diagnosed and how old were you?
  • 8/16/09 - 41
Did you know what MM was prior to diagnosis?
  • Never heard of it
Is there anyone else your in family with MM?
  • No
What led to your diagnosis?
  • Blooperball. I hurt my back playing and when I went to my doctor I told him how tired and fatigued I have been. He ordered bloodwork and WHAM….MM!!!
How many time were you referred before actually being diagnosed?
  • Once
Where have you received treatment?
  • Receive treatment in Bay City and at Karmanos in Detroit
Explain your treatment history
  • 9/9/09 Started Revlimid (25mg) for 21 days then 7 days off. 4 cycles at roughly a month per cycle
  • 9/9/09 Started Dex (40mg) once a week for 28 days
  • 10/16/09 Started taking Lovenox shots (150mg, blood thinner) once a day
  • 11/28/09 Signed up for a clinical trial
  • 12/23/09 Finished 4 cycles of Rev/Dex
  • 1/14/10 Started 4 straight days of Dex (40mg)
  • 1/7/10 Had T-cells taken out for clinical trial
  • 2/2/10 Infusion of 10 billion altered T-cells
  • 2/9/10 Infusion of 10 billion altered T-cells
  • 3/14/10 Will be admitted to Karmanos for autologous transplant
Why did you or your doctor choose a specific?
  • Originally my doctor wanted me on a Velcade, Doxil, Dex treatment but my brother, who works at Priority Health heard about the positive results and less side effect treatment of Rev/Dex. So my doctor contacted Dr. Anderson at Harvard and we decided to go down this path
What has been the side effects of the different treatments?
  • Luckily the side effects I have had have been tolerable. Each week during my cycles I would spend about 3 ½ days in the bathroom with diarrhea. I also had a blood clot in October.
  • The infusion of my T-cells gave me fevers, headaches. I also developed a blood clot in my arm from my 2nd infusion of T-cells.
What has been the hardest thing about your MM journey?
  • Stress it puts on my family. My wife has sometimes become a single parent to our 17 month old boy because I am laid up. I miss taking my wife out to dinner. I miss my students (I am a high school principal). I miss running and being active.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • Find a doctor who will listen to you and is up to date with the current research. Be careful what you read online because it can be depressing. When it comes down to it, you have to make a decision that you are comfortable with. Stay positive and find a good support group.
How have you been able to stay positive and encouraged in your MM journey?
  • God, family and friends. I am blessed with a strong support group. Also I enjoy reading positive articles like Phil’s blog. Online poker hasn’t hurt either.
After being diagnosed... What perspective was changed the most?
  • I need to give more to my community like they have given to me. I also learned that you can’t take life for granted.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • My mother grew up working on a farm. I also worked on a potato farm as a child. The high school I work in went through major construction several years ago including asbestos removal.
***To add your story to MM Mondays Story Time 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

MM Story Time #1: Kevin from West Lafayette, IN

The following journey is another one that I hold very close to my heart. This is the story told by Kevin's wife who has been the caretaker through this experience. Kevin was diagnosed at 25 and is now over four years out and still in remission. Thanks to modern science they now have a beautiful son!

Where were you born and raised?
  • Reynolds, Indiana
Where do you currently live?
  • West Lafayette, Indiana
When were you diagnosed and how old were you?
  • August 2005, 25 years old
Did you know what MM was prior to diagnosis?
  • No and neither did my PhD, Cancer Biologist Wife
Is there anyone else your in family with MM?
  • Not that we know of
What led to your diagnosis?
  • Broken lumbar vertebra
How many times were you referred before actually being diagnosed?
  • None, the neurosurgeon removed tissue from the vertebra and was diagnosed a couple of days later. Our current doctor also did a hip biopsy to confirm multiple myeloma not a plasmacytoma (myeloma in one site).
Where have you received treatment?
  • Indiana University Hospital/IU cancer center (Indianapolis, Indiana)
Explain your treatment history:
  • 10/2005: Started Dex and Zometa once a month (for a good 2 years)
  • 11/2005: Dex/Thalidomide (Revalmid and velcade were still in clinical trials)
  • 4/2006: Finished 3rd round of Dex/Thalidomide
  • 5/2006: Autologous Transplant #1
  • 5/2006-current only taking zometa (4 mg) every three months. In remission since transplant.
Why did you or your doctor choose a specific treatment ?
  • At the time, it was the standard of care and in my mind (cancer biologist wife) the best treatment option. Loved and trusted the physician. Would have done a tandem transplant had his sister been a match.
What has been the side effects of the different treatments?
  • Zometa made him flu like for the first few times he got it. He then started to take the entire bag of saline that they also administer with the zometa and has zero problems since. This was recomended by one of the nurse at the infusion center.
  • Dex made him gain 40 pounds in 4 months. The transplant went about as smoothly as possible. In hospital for 13 days!!!
What has been the hardest thing about your MM journey?
  • Just the fact that at 25 he isn't suppose to have this disease!!! Also, being married for 1 year, about the start a family and then having to put our lives on hold for a year. Then having to use IVF to have children was hard.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • Do your research and find a physician you trust. Our first doctor sucked!
How have you been able to stay positive and encouraged in your MM journey?
  • As a caretaker, remembering that it is okay to be pissed/sad/frustrated etc. content sometimes. You don't always have to be happy. The negative thoughts will creep in but trying to look on the brighter side of life helps. Also, live each day like you won't have another (or something in that realm)
After being diagnosed... What perspective was changed the most?
  • Life is short, live it well
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • My husband lived on a farm that was sprayed with insecticides and his mom lived on a farm growing up.
What MM sites or blogs had you found good information from after diagnosis?
  • MMForDummies and Nick's myeloma blog have been interesting to read. The treatment for myeloma has changed even in the last 4 years.
***To add your story to MM Mondays Story Time 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, February 11, 2010

Share your story on MM for Dummies!

If you would like your story of that of a loved one posted on MM for Dummies, copy and paste the questions below in an email and send your response to me at phil at cancerkicker dot org. Thanks for your willingness to share your story for others to grow in their knowledge of Multiple Myeloma!

Where were you born and raised?

Where do you currently live?

When were you diagnosed and how old were you? (example: 8/8/08 - age 28, IGG Kappa)

Did you know what MM was prior to diagnosis?

Is there anyone else your in family with MM?

What led to your diagnosis? (example: broken vertebra)

How many times were you referred before actually being diagnosed?

Where have you received treatment?

Explain your treatment history (bulleted list)
  • 10/2009: Started RVDD
  • 2/2010: Completed 7 cycles of RVDD
  • 3/2010: Autologous Transplant #1

Why did you or your doctor choose a specific treatment (For example, to have a transplant or not have a transplant, etc.)?

What has been the side effects of the different treatments?

What has been the hardest thing about your MM journey?

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

How have you been able to stay positive and encouraged in your MM journey?

After being diagnosed... What perspective was changed the most?

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

What MM sites or blogs had you found good information from after diagnosis?

Send a photo if you would like!

Cancer's Reality

Today Cassie and I will be attending a funeral. A college friend of mine watched his sister (age 30) battle breast cancer just to fall victim to sarcoma, a very advanced cancer that found its way into her lungs.

I have only been to two funerals in my entire life, both being grandparents of mine that were "old". My heart goes out to this family who's daughter/sister was stolen at such a young age. I expect this to be very eye opening experience for us.

It's hard to believe that only a couple of years ago I didn't even know what an oncologist was and now I will see first hand the painful affects of cancer and what is the end result for so many families each year.

Peace and love to this family...they have been through so much.

Wednesday, February 10, 2010

What do you want to know?

I am excited to report that people are very willing to share their MM journey! Before I start the interview process, I thought I would ask folks what questions I should ask. Below is a rough list I pulled together, but please add a comment with additional questions of interest. I want to make sure we get a good list before I start collecting responses. Thanks everyone!

When were you diagnosed and how old were you? (example: 8/8/08 - age 28, IGG Kappa)

What led to your diagnosis? (example: broken vertebra)

Explain your treatment history (bulleted list)
  • 10/2009: Started RVDD
  • 2/2010: Completed 7 cycles of RVDD
  • 3/2010: Autologous Transplant #1

What has been the hardest thing about your MM journey?

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

How have you been able to stay positive and encouraged in your MM journey?

Tuesday, February 9, 2010

Share your story?

I can honestly say Cassie and I extract a big chunk of our strength and positive outlook from the stories of others living with MM. When I was first diagnosed I learned about a Michigan State football player who I played against that was diagnosed at age 25 with a son on the way. That guy is now six years out from transplant and there is still no trace of the disease. I think about him and his family constantly. His success is my hope.

So in light of our dependency to lean on the stories of others to glean hope, I thought it would be fun and educational to have MM patients allow me to post their stories on this blog. If you are dominating MM right now and wouldn't mind sharing your story please post a comment or shoot me an email to pbrabbs at hotmail dot com. I'll send you some basic questions and we'll go from there!

Let's continue to journey together....

Saturday, February 6, 2010

4 months later...

Today marks 4 months since I started chemotherapy in preparation for a stem cell transplant or two where I will be using my own cells. Just to recap, here's a list of what my body has endured over this time:
  • 6 Doxil Infusions
  • 23 Velcade Infusions
  • 76 25mg doses of Revlimid
  • 30 20mg doses of Dexamethasone
  • 16 10mg does of Dexammethasone
I don't have any earth shattering wisdom quite yet, but jotted below are some quick thoughts on what I have found helpful over the last four months:
  • Lean on the MM blog-o-sphere: Connect with folks who are blogging about their MM experience. These people have been an amazing network of support for us and I hope one day to meet them all in person.
  • Add to the Conversation: Start blogging your journey or that of your loved one who has MM. This has helped me connect with myself, family and friends all awhile leaving a trail of information for others to be enlightened, inspired and hopefully converted to Michigan Football fans. And if you need help setting up a blog, just send me a comment.
  • Side Effects: Know what they are, but understand that they will not last forever. A couple of my side effects took me to the ER/Urgent Care 3 times in my first two cycles! Four cycles later there has been no signs of these issues.
  • Worse may be better: The worse I have felt, the better response my cancer was having to the drugs. Try to find the good in the worst of circumstances.....or just laugh.
  • Partner with your Doctor: We are all in this together, especially the patient and the medical staff. I think having a team environment in this journey is critical. I wish this disease had a start and finish date, but we're not there yet. Therefore, we all need to push forward together.
Four months from now I hope to have dominated my first stem cell transplant with no signs of M-protein. I also hope to have been able to sit back and relax for the first time in my entire life. We'll see....

Friday, February 5, 2010

I am a Shy Guy...really.

Michigan Football and Multiple Myeloma must be a match made in heaven because the combination is opening a lot of doors to engage folks in my journey with cancer. Ever since I was young I hated getting called on in class to give an answer. For me, giving a book report was worse than receiving a spanking from my father. If you know me, you know my face turns red if you just say my name. I blush like none other. I find it ironic that I ended up being a kicker because I really don't like that much attention...especially 110,000 fans in the Big House watching your every move.

The latest happenings include an interview for the U of M Student Athlete magazine, tomorrow I will be speaking at a Superbowl Breakfast where last year there were over 300 people and next week I will be interviewed by I will also be working with the local chapter of LLS as their Honorary Chair for Light The Night Walk which will be on October 2nd.

I am so thankful for these opportunities and that I have the energy to go out and spread the word about Multiple Myeloma. In 2010 alone there will be 35,000 people diagnosed.

We all have a platform of some kind and I encourage you all to continue to speak up! There's a lot of great work being done in the area of Multiple Myeloma research, but we are still a ways off and need much more support. Let's continue to dominate together!

P.S. I completed my last Velcade infusion for Cycle #6 this morning. I forget to even mention all the crazy chemo my body is absorbing...which is definitely a good thing! Oh...and I just ran another 3 miles. No funk this time...I am just crazy. Here's the end result:

Tuesday, February 2, 2010

In a funk? Run 3 miles.

Some reason over the last two days I hit a foggy funk where my glass has not been 99% full. For those who know me and probably even those who follow this blog have learned that I am very optimistic and it isn't far fetched to think that maybe I had lasik eye surgery one day to fasten on those rose colored glasses.

Well, yesterday and today I could not find my pink tinted glasses and I had a hard time snapping out of my funk. There has not been anything specific weighing on me, I just felt blah and 6 cups of coffee, dominating water and hugging my kids couldn't get me out of it. I asked Cassie how long she gets in these sort of funks and she said that her whole pregnancy has been a funk! Oh man, I would not survive! More of a reason why Cassie is a champ.

As I was wasting away I decided that I would do the one thing I have stayed away from since starting chemo almost four months ago...excercise. Prior to starting chemo I ran in a 10k as my way of preparing my mind, body and soul for chemo. Since starting I haven't run once.....until today! I bundled up, strapped on some music and scooted down the street in the snow. It was very freeing and I felt like it gave me back some control. My energy level was also elevated after the run and the night culminated with a great dinner with some good old friends.

I don't plan on making running a habit, but I am willing to do whatever it takes to avoid losing my pink shades.

Monday, February 1, 2010

Myeloma Beacon: More Awareness!

I had the good fortune to sit down with Myeloma Beacon for an interview that went live today. Myeloma Beacon is a growing source of online information on Multiple Myeloma. They can also be found on Twitter by clicking here.

Here is the article that was posted today (click on title):

Personal Perspective: Former Football Star And Young Father “Dominates” Cancer With Optimism, Information, And Support