Float like a butterfly, sting like a bee

"Round 4" or what the doctor calls Cycle #4 is now underway. There's talk of staying in the ring with my Multiple Myeloma for two more additional cycles after this one to ensure that we give it our best shot. I was looking forward to being done, but when taking on cancer you need to dominate it, and that means you need to be agile, mobile, flexible and maybe a little hostile at times to give you that extra energy to stay in the ring and make sure you knocked it down and out!

On a side note, thank you everyone for the growing participation in Thankful Thursdays. Amidst the twist and turns of this cancer journey that started over two years ago, being thankful and hopeful have been two key ingredients to keep me on the path of domination which is producing in me much optimism. Every week I encourage everyone to post something new that they are thankful for. Why wait till Thanksgiving to get started?

Myeloma Mondays #27: Lovely Beth 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.

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.

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

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

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)

EXAMPLE:

• 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?

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....

MM Bringing Spartans, Wolverines and even Buckeyes together...

Today I was blessed with the opportunity to connect with JM up at MSU. JM's husband, SM, was diagnosed with MM at the age of 25! They have an amazing story which has provided me with so much strength and encouragement ever since I learned of them through someone on my medical team. JM has been awesome at reaching out to me to get the live updates on how both Cassie and I are doing. So today we met in person for the first time and it was so great. As I was driving back to Ann Arbor I started to think how MM has brought so many people into my life that I hardly know, but that I am so thankful for.

Oddly enough, in my email inbox when I got home there was a message from a friend who had another buddy who was recently diagnosed with MM. This fellow lives down in Columbus, OH of all places and I can honestly say that I know what he is going through right now given that my diagnosis is still fresh in my mind. We may be in different life stages, but the whole uncertainty aspect knows no age, gender, or college football affiliation!

I think one thing cancer patients and their families do best is help absorb each other's worries and provide hope that is very hard and probably awkward for those who haven't been touched by cancer to offer up. So the web of relationships caused by my MM diagnosis continues to expand, and for this I am saddened, but also thankful. Thankful, because I know that with each diagnosis there will be more pain and anxiety, but with that there will be a greater measure of hope to be expressed and shared by all.

We will kick this thing...together.

-CancerKicker #34