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.

Physical Change - 1 year later

I am coming up on one year of treatment which has included 7 cycles (5 months) of RVDD, two autologous stem cell transplants and now onto 4 cycles of RVD. My body has been put through straight hell, with my spirit very much still intact. Below is the picture Cassie and I took the first day of chemo. So much for just saying no to drugs! I have been saying YES for a while now.

One year of treatment combined with the decrease of my physical activity (i.e. not working out) has had significant affects on my body. First, I notice that things don't heal as quickly as they used to; although, maybe I just never paid attention to this sort of thing. In addition, my muscles have all but disappeared. I left Michigan Football in the greatest shape of my life. I was 210 lbs, I could bench press over 300 lbs and I could run a sub-5 minute mile pretty easily. Now I am 180 lbs dripping wet, I couldn't do 10 push-ups and walking a mile right now is a solid accomplishment.

But that's okay. Before I started treatment I trained and then ran in the Big House Big Heart 10K Run (here's that old blog post). It was my way of telling my body that I am still in control and I also wanted to get my body in the best possible shape before treatment. Well this year I am not able to run the 10k for health reasons, but Cassie, my mom and sisters are stepping up to run for me, along with a bunch of good friends. I did sign Ocean up for the fun run and I will walk it with him. It will be a special moment to be able to enter the Big House with him running by my side. Something that I will look forward to each year from here on out.

Next Steps:

• Now - 10/4 Two weeks off of chemo - hooray!
• 10/5 Start of Chemo Cycle #2
• 10/9 Michigan dominates MSU

I'll end with a photo of John (Navarre) and me celebrating after the Washington Kick. I started this treatment journey with the goal of attaining the same ending from that day (8/31/02). This picture is just a reminder of how sweet it is going to be when we get this disease out of my body and I can do 10 push-ups again!!!!

Myeloma Mondays #26: Ernie, Big EZ from Wake Forest, NC

Linda Baker for husband Ernie Baker, otherwise known as Big EZ .Check out their blog...their journey through cancer: www.walkingwithbigez.blogspot.com

Where were you born and raised?

• I was born in Buffalo, NY but raised primarily in Ormond Beach, FL

Where do you currently live?

• Wake Forest, NC

When were you diagnosed and how old were you?

• 1/29/10 - age 58

Did you know what MM was prior to diagnosis?

• No

Is there anyone else your in family with MM?
No

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

• Increasing sacral pain, making it more and more difficult to sit comfortably. I used a stand up desk at work and took lots of ibuprofen as I sought answers to what might be causing the pain. I finally needed stronger, prescription pain medicine and went to an orthopedist.

How many times were you referred before actually being diagnosed?

• I first went to a chiropractor, then two different orthopedists and physical therapy before an MRI was ordered and "abnormal cells" were seen in my sacrum.

Where have you received treatment?

• Cancer Centers of North Carolina, Raleigh, NC
• Duke Adult Bone Marrow Transplant (ABMT) Outpatient Clinic, Durham, NC

Explain your treatment history:

• 1/26/10 - First sacral radiation treatment
• 2/5/10 - First chemotherapy treatment VTD
• 2/11/10 - 12th sacral radiation treatment
• 3/29/10 - Taken by ambulance to hospital for severe sciatic nerve pain down both legs - could not walk or bear weight
• 4/29/10 - Released from hospital after 10 additional radiation treatments to sacrum, 10 new treatments to upper femur for 1 inch lesion, food aspiration pneumonia from being bedridden, a failed attempt at an intrathecal pain pump
• 7/9/10 - 23rd and final chemotherapy treatment VTD
• 8/5/10 - Hickman catheter placement and Cytoxan chemotherapy and mesna at Duke
• 8/17/10 - Aphresis at ABMT
• 8/23/10 - Move into apartment in Durham to be close to Duke
• 8/24/10 - Melphalan chemotherapy at ABMT
• 8/25/10 - Stem Cell Infusion at ABMT
• 9/10/10 - Headed home to Wake Forest - DOT +16

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

• Because I was relatively young for Myeloma, and had no other health problems.

What have been the side effects of the different treatments?

• Hyper on the Dex days making it difficult to fall asleep, fatigue, burning in the outer thighs, peripheral neuropathy in my feet, and hair loss following Cytoxan.

What has been the hardest thing about your MM journey?

• Initially it was getting the diagnosis of "abnormal cells" (which turned out to be a plasmacytoma) in my sacrum, and then being terminated from my job as Vice President of a small company 2 days later - no severance package or insurance benefits. I experience different and changing feelings on a day to day basis in my body, and don't know exactly what to attribute it to...cancer? medications? treatments? old age?
• But perhaps the hardest thing to deal with is my lack of mobility, independence and inability to sit. The tumor basically obliterated my sacrum which is the nerve hub for the lower part of the body. Sitting at 90 degrees is impossible for now because of the pressure it puts on the nerves to my legs. So, that means I have to sit very reclined. I basically have two positions, lying or standing. I haven't driven since mid March, I must stand to eat, and "sitting" to go to the bathroom is very difficult and painful. Surgery really isn't a good option at all, being that I have found ways to function. So I pray the body will rebuild my bone and once again protect my nerves so that I can walk without a walker, take my dogs for walks again in the mountains of NC, and just sit comfortably so my wife and I can go out to dinner and a movie again. For now though, I am happy I can walk!

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

• Treating my Myeloma has become a full time job and requires every bit of energy I have to fight it. I realize it is going to be a long, hard fight. Also, educate yourself about your disease, using current reliable sources such as the MMRF or Multiple Myeloma Research Foundation or the Leukemia and Lymphoma Society. Stay positive, keep the faith, hope for a cure!

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

• Through the love and support of my spouse (and caregiver!), my family, my friends and my church. I am a Grandpa to two sets of girl/boy twins and have another grandchild arriving in March. There is much to live for! My faith gives me hope that I can do all things through Christ who strengthens me and my life verse has become Philippians 4:11-13. I want to be a witness for Christ in good times and bad, hoping to glorify Him in the process.

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

• After being in executive management for years, I was unexpectedly terminated from work and forced to apply for disability. Therefore, my perspective on the importance of work changed, though I always want to keep my mind challenged. I am thankful I did not have to handle the stress and responsibilities of work with what I have been going through. My perspective on the importance of time spent with family and my wife has also changed. It is to be treasured and never taken for granted.

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

• No

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

• MMRF, and Leukemia and Lymphoma Society.

Miles 4 Myeloma domiNATION - West Side!

I wanted to briefly share the awesome work of a young adult named Laura, a daughter/caregiver of a Myeloma mother that has been a trooper. I met Laura's mom early on through MM For Dummies and then we have stayed in touch via email. Right now Laura's mother is recovering from her aggressive treatment from this year. To dominate MM for her mom and others, Laura has decided to swim, bike, skip, hop and jump 1,000 miles by the end of the year to raise money for Multiple Myeloma research done by Dr. Jakubowiak (J) at UMCCC.

Note: Dr J. for those who don't know him yet, he is on the steering committee of the MMRC along with Ken Anderson (Dana Farber) and Sagar Loniail (Emory), which is funded by the MMRF. You can read his profile here. He is pretty much one tough dude who is committed to finding the cure for Multiple Myeloma. He will, but he needs our help.

Laura is representing the West Coast domiNATION out in Cali for those who want to come alongside of her and cheer on her and her mother. Please consider following her story by becoming a fan on her facebook fan page by clicking here. Support her and her mom in their personal domiNATION of Multiple Myeloma!!!! Donations can be made online here. What an inspiration!!!

I Snuv Snu Sneetie!

Today Cassie and I celebrate our 6 year wedding anniversary. It feels closer to 16 years given all we have been through. The picture below was taken the first day of our honeymoon back in September, 2004.

Thinking back to our early dating days, eventual engagement and a very brief stint of married life without kiddos....we were operating from a different planet. Seriously. We actually had a made up language and I think we spent most of our time smitten over one another during the few minutes I could cram between class, football practice, office hours and late nights studying for my engineering exams in the Law Quad.

This season in our life is very different. We spend countless hours under the same roof and our language is now made up of terms most regularly heard in the office of an oncologist sandwiched between pre-schooler talk. Never once did I think I would be spending my 6 year anniversary in the infusion center to treat an incurable cancer with three little ones at home. I did expect to have 3 kids before age 30...check!...but cancer...you gotta to be kidding me. Worse yet, the cancer is in my blood and bones...therefore...not easily removed.

Although the stress of cancer leaves very little to be desired, looking back at our last year of marriage which was consumed by me being in treatment, I can honestly say that I have seen Cassie step up to the plate as my helper. She is my Myeloma expert, caregiver, lover, all the while caring for 3 beautiful kids all under the age of five. She has witnessed and supported her husband through what could be easily considered the most aggressive MM treatment therapy outside of Arkansas.

I don't expect life to have been any crazier than it was last year and I am getting really excited about what is in store for Year 7 of marriage. Regardless of the uncertainty, I have a rock in Cassie by my side.

Love is a choice. I choose you.

-Honey

P.S. Here's the tail end of me proposing to Cassie in 2004 at the Houston Autoshow. She said, "Of Course!"

More Multiple Myeloma Awareness: Required

To be completely honest, I probably get just as excited when someone new learns about Myeloma as I do when my M-protein drops. Multiple Myeloma is a tough cancer to swallow with no simple cure, and even with an aggerssive protocol that is very taxing on the body, people are excited about a remission of 7-10 years. At age 30, that's a hard pill to swallow with three kiddos under five and a mother that stays at home with these cute munch-guns

So although I am thankful for my treatment options and how I am responding (slowly, but getting there), I know that what is going to keep me here to see my kids go through school, on to college and one day marry, is people getting behind the cause to continue to advance towards a cure, and in the meantime, new/novel treatment therapy that provides more opportunity to push the remission out longer.

Today was one of those blessed days in terms of the realization that the word is getting out. Above is a picture of a football team all the way in the Czech Republic that is sporting the Burgundy Myeloma colored wristband with the word "dominate" on one side. Also, on their helmets they are sporting burgundy ribbons. Many thanks to their coach Zach Harrod for taking up the cause to help us all affected by Myeloma continue to grow in advocacy and awareness! You can follow this team on Facebook here. They are 1-0!

In addition, a friend of a friend wanted to take up a cause for his half marathon in Columbus, Ohio, of all places. After learning about Cancer Kicker's desire to inspire, advocate and raise funds to cure Multiple Myeloma, Aaron Conrad has called friends, family and fellow bloggers to come together to dominate. His slogan is simple, "Together We'll Dominate". I totally believe as a community of people we will dominate Multiple Myeloma. Which reminds me, vote for the IMF Racecar if you have not already by going here! Lastly, if you want to join Aaron's charge, read how to do so on his blog.

If you have any interest in helping build awareness for Multiple Myeloma, shoot me a comment. If people don't know about this disease, how can we expect them to help? Thanks everyone!

The Power of the M Ring

Week 1 of my return to chemotherapy is in the books. I am highly anticipating that if there is any Multiple Myeloma left that it is crying for its mamma...who can't be found anywhere. To mix things up, I am trying a new visualization technique where I pretend I am Denard Robinson playing tackle football at recess with a bunch of third graders. The Myeloma being the third graders. I am also sporting my M-Ring for the first time since receiving it many years ago.

The biggest challenge right now is fatigue; especially the day of infusion (Tuesdays & Fridays). I can go from 60 to zero in 4.7 seconds. Cassie has been great though. She is really pushing me to have scheduled nap times to ensure that my body is able to recover from the intense treatment and also fight all the little bugs I am certain Ocean is bringing home from pre-school. Speaking of pre-school, Ocean is just loving it. Apart from his parents, his two favorite non-food things are people and projects; therefore, school is like Disneyland for this kid. It's also been pretty relaxing for mommy.

domiNATION Update: We are getting close to the $15,000 mark...thanks everyone! All of these funds go directly to Multiple Myeloma Research at UMCCC done by Dr. J. who has been the lead investigator on a number of clinical trials over the last few years. If you would like to make a contribution to the domiNATION, you can do so here: Make an online donation to dominate Multiple Myeloma

Kiwi domiNATION

I am continued to be floored by the support of my faith, family and friends throughout my journey with Cassie to dominate Multiple Myeloma. There are the neighbors, former teammates and coaches, new faces and old faces...the list goes on and on and it feels like the momentum is building.

Just this week Nick Willis, Silver Medalist in the Beijing Olympics in the 1500m, sent me the above photo of him winning over in Milan (Italy, not Michigan) with his MM Burgundy Dominate bracelet hoisted in the air as he celebrates victory. Nick is from New Zealand and a former Michigan Wolverine who has quite the faith and cancer story that he shared on camera with me in the hospital amidst my second bone marrow transplant only a couple of months ago (watch video). Nick's faith and perseverance are contagious and I hope for continued healing over injury and a steady pace as he goes for gold in London in 2012. Follow his blog here.

Thanks to volunteers there are close to 5,000 burgundy MM Dominate Bracelets in circulation around the world today. I am convinced that for us to dominate MM, we first need to get the word out about Multiple Myeloma. Thanks to everyone who has shared my story and participated through prayer, thoughts and generosity. Together, with Nick and the help of others, we will dominate this disease.

-Phil

Friday Infusion is back...

The brave new world, i.e. life post two bone marrow transplants, is different. For one, as I sit here in at UMCCC's infusion center drinking chemo through a vein in my right arm, I am much more tired. Not even the dexiness from the Dexamethasone (steroid) is keeping me from being reminded of the tiredness presented in my physical body. Mentally and emotionally I am still the dominating Phil everyone knows, but my physical cells that move me from here to there are screaming for rest.

Regardless, I am still very passionate about beating this thing and I feel like I am in the 4th quarter as I take on a heavy chemo regiment of consolidation. I am expecting to hear two words, Complete Response (CR), by end of year and I hope to remain there for a very long time, if not forever. Time will tell the effectiveness of this aggressive treatment, and I am hoping my experience can be a benefit for me personally and my family in terms of keeping me around, but I also want to see the world of Myeloma continue to advance in the knowledge that will get everyone the cure they need. I sense it's coming...

Above is a photo of me giving a shout out to the U of M Swimming team that my father-in-law has coached for over 25 years. He's quite a stud and I guy who admire and respect. So although I love Michigan Football, I also have a big heart for the Swim Team and Water Polo ;)

Dominate Multiple Myeloma and conquer Notre Dame.

-Phil

P.S. If you want to join the domiNATION and raise funds to kick Multiple Myeloma...learn how by click here.

You Know You've Had Too Much Chemo When...

Tuesday I returned back to B1 at the UMCCC for return to roughly 4 cycles of infusions. Oddly enough, I felt like I was returning back home after spending most of the spring and summer in a hospital bed or recovering at mi casa from two bone marrow transplants. This feeling that life is returning to normalcy (if you can call ongoing chemo that) has prompted the Top 5 Reasons of when you know you have had (way) too much chemo:

(5) When you can pronounce all the drugs and their exact dosages and your favorite being senokot and colace

(4) When you are back to the same weight you were in high school and it has nothing to do with running or walking a lot

(3) When they call your name in the cancer center patient waiting room and several people quickly speak up and say "He's right over there"

(2) When your veins are so impossible to find that the nurse tech questions whether they are even there anymore

(1) When your wife tells you to go to chemo infusion by yourself!

My spirits really seam to be on the rise and I can't tell if it's because (a) the cancer is on it's last leg (b) my favorite season (autumn) is almost upon us or (c) the increased hope that my Wolverines may have a winning record for the first time since my cancer diagnosis. It's probably (c), but maybe All of the Above combine with swinging Ruby high up to the sky!

P.S. 7 more days remaining on FREE SHIPPING for your Dominate shirt(s) if you order online by clicking here. PROMO CODE = kickcancer

More domiNATION

Tomorrow marks the start of my consolidation therapy roughly 10 weeks after my second autologous bone marrow transplant. In Phil terms, we are starting more nuclear warfare on my bone marrow in hopes to rid any remaining Multiple Myeloma and knock this stuff so far into oblivion that it won't want to come back any time soon (and hopefully never). Apparently research is showing that maintenance therapy is helpful in driving a deeper response and longer remission.

The plan is to do max dosage of RVD for 4-8 cycles and eventually remove some of the drugs and lower the dosage. I think the long term schedule is TBD, but I think we will be keeping up some level of drugs (i.e. nuclear warfare) to present a hostile environment to ensure the Myeloma gets the message that it is NOT wanted back in my bone marrow. I am very excited about this approach because my body is recovering well from the summer's two transplants and I smell domiNATION.

Speaking of domiNATION, many people across the country have joined forces to help raise awareness and funds for MM research, none of which I knew prior to being thrust into the world of Myeloma. Just today some guy down in Ohio decided to run the Columbus Half Marathon in honor of me and to support the Cancer Kicker Foundation. Here's his blogpost about what he is doing if you happen to be in the area and want to help out. There are a few more domiNATION's that are being established in the South, West Coast and Midwest if you want to get involved. If you want to learn how to start your own, read how to do that right here:

• Miles4Myeloma by a daughter of a MM Patient. Follow Laura on Facebook as she attempts to run, ride walk over 1000 miles to raise over $1000 to dominate MM!
• The Southern Pearls are looking to kick cancer in the South! This is another daughter and caregiver of her mother who is dominating MM.
• It's official, the first domiNATION event is going to happen in the windy city of Chicago during Michigan Football's Big Ten Opener against Indiana! Check it out here!
• There are several other domiNATIONs underway that I will mention in a future blogposts!

Since it's inception just over a month ago, the domiNATION has raised over $10,000 to support the work being done by Dr. J at University of Michigan's Comprehensive Cancer Center. Dr. J is committed to finding a cure for everyone diagnosed with Multiple Myeloma. I stand along side him and his staff in their efforts and applaud him for his commitment to me and everyone else that has joined the MM community.

If you would like to make a tax deductible donation, you can do so by clicking here. 100% will fund MM Research. No operating overhead...yipee!