Wednesday, June 30, 2010

Phil's Vacation: Day +7

I had a great day again hanging out with friends, Ruby and even skyped with Ocean and Iris! Also, Dr. J stopped by for a visit, which was pretty awesome. I don't talk much about Dr. J, but I think very highly of him as a person, researcher and care provider. He is extremely passionate about finding a cure for all Multiple Myeloma patients; which is a big reason we chose him as our oncologist. I don't think my experience would be as positive if it was not for him and his staff. He gets a Dominate Sticker for being so flippin' brilliant.

Transplant Tip of the Day: Eat and drink what you can, not what you can't. My first transplant I was very inhibited by my throat sore; therefore, only soft mushy foods were good to swallow. So I eventually learned to order the same meal three times a day! The chemo really shocks my appetite to the point where only super salty or super sweet things are even desirable; on top of the fact that I have no hunger whatsoever. So I have learned to eat and drink the things that give me enough calories to keep my body weight from dropping any more than 10 lbs. The first transplant I managed to maintain even weight!



A quick update on Dominate shirts. Zak is going to have a shirt packaging party for anyone who wants to participate. All volunteers will get a free dominate shirt for helping him out. If you are interested, email Zak at Zak at cancerkicker dot org. If you haven't gotten your shirt yet, today is your day! Just click here: DominateGear.com


Tuesday, June 29, 2010

Phil's Vacation: Day +6

Day +6 is in the books! Today felt a lot like yesterday, which is good. My first transplant I remember neutropenia really running me down. I think the company throughout the day is probably playing a key role on my emotional and physical health, although I recall last time that I didn't want any visitors. I think it helps being my second transplant in that I know what to expect....like nurses coming in at midnight for vitals, 4am blood draw and 6am meds!

Transplant Tip of the Day: Get Netflix and bring in your laptop! There are a lot of great t.v. series that are available for viewing online! I highly recommend Friday Night Lights.

Correction from yesterday: I did not come up with the neck/throat ice pack idea. Cassie ever-so kindly reminded me that it was her stroke of brilliance. Way to go Sweetie, I owe you big time!


SEGA...domianted: My boy Steve brought his SEGA which is probably from 1993. We took on some bad guys....it was pretty legit.

A Week of Unbelievable Support

I have completed a full week since my admission at UMHS. I just wanted to take a step back and thank everyone amidst the storm for their overwhelming support. Every blog comment, facebook message, email, etc., really helps fuel my domination. I really thrive on social interaction, especially when it is so positive and encouraging. So thanks!!!

Here are some quick stats from the last week that are just remarkable. Maybe, just maybe, there will be some people diagnosed with Multiple Myeloma who will have heard about it before they are diagnosed. Although I wish they were never touched with the disease....something the Cancer Kicker Foundation wants to work on.
  • Personal Blog (MM For Dummies): 6,851 Visits from 47 Countries and 45 States
  • Cancer Kicker Facebook Page: 1,256 New fans and over 600 Interactions
  • Dominate Shirts (available here): over 100 sold and shipped! (thanks Zak)
I'll leave you with a photo of two students who discovered while in Madagascar (of all places) that they both were wearing Dominate bracelets. Either the world is getting smaller or the dominate message is getting out! Thanks to everyone out there who is living a life of domination and inspiration amidst difficulty. Keep dominating. -Phil

Monday, June 28, 2010

Phil's Vacation: Day +5

I have hit neutropenia...yippee! All that means is that my White Blood Cell Count (WBC) is below 1.0 and I must wear a mask if I leave my room and I can no longer leave the unit. Other highlights from Day +5 include:


Phil's Vacation: Day +4

More pickles and more great company. I also watched Invictus which I found inspirational, but probably more made for viewing in the theaters. The quote that stuck out the most from Mandela during the movie was, "Forgiveness liberates the soul..." In America it seems like we are quick to blame, slow to apologize and very few times do we reach forgiveness. So let's make sure we teach our children how to dominate forgiveness.

Myeloma Mondays #23: James from Sydney, Australia

**To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil


James' unfolding MM story, as told mostly by his wife Carlin



Where were you born and raised?

  • James was born in Mumbai, India, but was raised in Sydney, Australia

Where do you currently live?

  • We lived in San Francisco when James was diagnosed (Carlin is from USA) but due to not being insured, we got a medical evacuation flight back to Australia for James' treatment, and we are currently in Sydney Australia

When were you diagnosed and how old were you?

  • April 9, 2010 at the age of 39, type IGG

Did you know what MM was prior to diagnosis?

  • We knew about bone marrow cancers, but not really multiple myeloma

Is there anyone else your in family with MM?

  • James' paternal uncle potentially has it, but is waiting on more tests

What led to your diagnosis?

  • James' ribs had been hurting since August 2009, and he had sought treatment from chiropractors, acupuncturists, and doctors. They all said it was torn intercostal ligaments and that it would take several months to heal. By March, the pain had left his ribs and moved to his back. Extreme back pain and being unable to get out of bed for over a week due to weakness and spasms led to Carlin's grandmother to call a family friend who was a doctor (we had not gone to doctor due to being told nothing was wrong by many other doctors, and we didn't have any health insurance either). The family friend told us to get an ambulance and bring him to the emergency room, as it might be cancer (we thought he was crazy to think it was cancer) but we called an ambulance, and within an hour of arriving at the emergency room, a CT scan and blood tests revealed multiple myeloma (yes a HUGE shock, we thought maybe he had herniated disks in his back or something).

How many times were you referred before actually being diagnosed?

  • We had gotten blood tests in June 2009 which looking back on now he OBVIOUSLY had multiple myeloma (white cells low, platelets low, high protein, high immunoglobulin- DUH!) we questioned the doctors on these tests and they said it was probably just an infection or something. We also got sperm tests done at this time, and his count was really high, but his DNA integrity was really low. We also questioned these and were told, DNA gets damaged as you approach 40. We then brought James to the emergency room in February 2010 as his ribs and sternum really hurt. They took basic x-rays and said nothing was wrong. We practically begged for an MRI and blood tests, they told us it was unnecessary. It wasn't until we arrived at the emergency room April 9, 2010 that he was finally diagnosed.

Where have you received treatment?

  • Initially at California Pacific Medical Center in San Francisco (Dr. Bertrand Tuan-hematologist), and currently at Westmead Hospital in Sydney Australia(Prof. Ian Kerridge-hematologist)

Explain your treatment history:

  • 4/9/2010- Diagnosed, trying to get stable for evacuation to Australia, given pamodromate, morphine, valium, antibiotics
  • 4/23/2010- Medical evacuation flight to Australia, began TCID treatment (thalidomide, cyclophosphamide, idarubicin, dexamethazone), also on prophylactic clexane (blood-thinner), antibiotics, anti-virals, anti-fungals, calcium, vitamin D, and zometa
  • 2010- planning an autologous stem cell treatment soon (after 4 rounds TCID and some rest) and then followed later by a donor bone marrow transplant (his brothers have been tested but we have not received results yet)

Why did you or your doctor choose a specific treatment?

  • Our doctor chose a very aggressive treatment approach and two separate transplants because James is very young, and otherwise very fit and healthy, and thinks this is his best chance of long-term survival/remission. Also his myeloma was very advanced by the time it was diagnosed, 90% of the cells in his bone marrow were abnormal.

What has been the side effects of the different treatments?

  • The pain medications he was on (morphone and oxycodone) really upset his stomach, as does the dexamethazone. He gets diarrhea when he is on dexamethazone. He gets a bit of nausea from the thalidomide, but not too bad. He has lost 15 kilograms, but this is a combination of the disease and the chemotherapy. We are using complementary therapies to counter the side effects. Aloe juice and probiotics seems to really help his stomach. Milk thistle has helped his nausea and is supposed to protect your liver from side effects of chemotherapy and tons of prescription medications (Carlin is a naturopathic doctor, so had done tons of research on natural therapies to complement his main treatment regime).

What has been the hardest thing about your MM journey?

  • The shock of finding out so quickly via a trip to the emergency room was pretty huge. Facing cancer at such a young age. Feeling confused as we have such a healthy lifestyle (only eat organic foods, practice yoga 2 hours a day, don't drink alcohol, don't smoke, etc). Also, we had just moved to the USA, and had so many dreams and plans for our life there, and then had to move right back to Australia for treatment after less than 12 months living in the USA.

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

  • You are your best advocate. Keep pestering doctors and don't take no for an answer. You know your body best, and they will easily brush you off- so be persistent! If you feel something is not quite right, do not stop until someone has a good explanation for this.
  • Also, take your health into your own hands. Try to be as positive as possible, and use as many holistic approaches as possible to complement your chemotherapy and transplants. James is meditating a few hours a day, eating organics, getting fresh air and exercise, listening to uplifting music, using aromatherapy, etc. Also, google can be your best friend and your worst enemy. Take it with a grain of salt. It doesn't have to be all doom and gloom.
  • Be honest with your friends and family about what you need. Don't be afraid to ask for favors and accept favors too. Everyone needs a community around them!

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

  • See above about meditation, but honestly James is pretty much the most positive person you will ever meet, so it comes naturally for him. For Carlin, it's a bit harder. Trying to find the gratitude in the little things, as the big things may not be so rosy, but there is always a little thing that you can find to be happy about. We set up a caring bridge website for James (www.caringbridge.org/visit/jamessaldanha), James loves hearing all the messages he gets on the website, and that has really helped him keep going too.

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

  • Well, we were always pretty positive holistic-minded people who took advantage of what life has to offer, traveling and trying to maximize the moment. But, now we try to just take one day at a time. We don't live too much in the future and make too many plans, we just try to get through each day and be happy in the small things.

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

  • James worked in a pharmaceutical company's lab from 1990-2000, so we suspect this may have played a role, though we don't know of anyone else who worked in this lab with cancer.

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

  • It has been a real whirl-wind as it's only been slightly over a month we've been on this myeloma roller coaster, but we use the multiple myeloma research foundation site, and like reading the blogs of other myeloma patients too.
**To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Saturday, June 26, 2010

Phil's Vacation: Day +3

Today was great. I had awesome company, received six jars of pickles (ate one) and finished off with 1.5 miles walking and an hour of Beatles Guitar Hero. My new buddy Steve had an interesting comment about how we view time that was pretty profound, and I am hoping to dwell on it more as I dominate the rest of this transplant. Domination to all! -Phil

Friday, June 25, 2010

Phil's Vacation: Day +2

Thanks to my buddy Andy, I was able to get my hands on a full jar of dill pickles and some mountain dew. Both lasted under 15 minutes. I still have no appetite in this fight to get better, so I am having to pull out the big guns.

Thursday, June 24, 2010

Phil's Vacation: Day +1

Not much to report, other than my appetite is non-existent and I am pretty tired. By the way, thanks to everyone who bought a dominate shirt, apparently we sold 50 in the last 24 hours! There are still some available and they can be ordered here: DominateGear.com

Wednesday, June 23, 2010

Phil's Vacation: Day 0

There were a lot of great things that happened today and also some strange things. First, we reached our goal of 5,000 fans on our Cancer Kicker Facebook page before my transplant...hooray! Secondly, USA beat Algeria. I think you can give credit to Jamie and Daniel below who sported their Dominate bracelets at the game in South Africa. Lastly, I got my 4.5 Million baby stem cells back!


As for the strange things, Ann Arbor got hit by an earthquake tremor and a tornado. I slept through the earthquake, but unfortunately for the tornado warning all the patients had to take cover in the hallway...I had to tape this (watch).

The day in review went like this:
  • woke up at 6am
  • watched Sports Center
  • ate breakfast
  • Cassie and Ruby visit
  • dominated Stem Cell Transplant
  • ate lunch
  • slept
  • ate dinner
  • sat in the hallway due to tornado warning
Here's the video recap for Day 0.

Tuesday, June 22, 2010

Phil's Vacation: Day -1

Cassie and I have been joking for the last few days that my transplant up at UMHS is going to be a two week vacation because it will be a break from the daily activities of caring for kids, cleaning the house and all that good stuff that comes with being all grown up.

So I am titling this series of video blogs "Phil's Vacation" to put a positive spin on the time away from family and the challenges that come with a bone marrow transplant. The goal is to capture the whole stem cell transplant process in order to take some of the fear, uncertainty and unknown out of it for future transplant patients. Plus, give my family, friends and followers a taste of what I am going through.

So enjoy....Day -1 of my vacation at UMHS.



In all things....dominate!

Phil #34

Permanent Domination

Today I will be admitted at UMHS for my 2nd bone marrow transplant. Yesterday I downed a couple of bottles of Melphalan intravenously through my new PICC line. The only difference I plan on seeing between this transplant and the last, is that I will not only be sporting my dominate bracelet, but also my rotation of Dominate shirts.

Over the last two months since my last bone marrow transplant I have grown in my determination to dominate Multiple Myeloma and advocate to that end. What has really kept me on the path of domination is having people as bold as my little sister showing a commitment to dominate by adding a permanent ink reminder that supersedes any rubber bracelet!



Over the last two months I was given the opportunity to advocate and bring the dominate message throughout the state of Michigan. Here is a list of the few things we were able to take part in:

  • University of Michigan Kicking Camp: Spoke at Chapel Service


  • Michigan High School Football All-Star Game talk: Provide dominate message to both teams after practice
  • Michigan High School Football All-Star game: halftime interview and dominate talk to all players


Lastly, my goal for this transplant is to provide a recording at the end of each day doing an inventory of my whole experience to help prepare those who are approaching their first stem cell transplant.

Monday, June 21, 2010

Myeloma Mondays #21: Dave from Northern California

**To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil



The journey below is written by Lori, Dave's wonderful bride.


Where were you born and raised?

  • Dave was born at a military base in Ft Rucker, Alabama but was raised in Bay Shore, Long Island
Where do you currently live?
  • Northern California, outside of the Sacramento area
When were you diagnosed and how old were you?
  • Dave was diagnosed while working California. We were in the middle of a coast-to-coast relocation from Suburban Maryland outside of Washington, DC where we had lived for 27 years.
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?
  • Dave couldn't get out of bed to leave for a business meeting in Las Vegas. He was staying with childhood friends of mine in California while I was still back in Maryland selling our house and getting ready for our move. He was transported eventually to a local, small town hospital, where he was in tremendous back pain (a T8 compression fracture) and the original diagnosis I received long distance was a "metastatic cancer of the spine". The radiologist saw Dave riddles with lesions.
How many times were you referred before actually being diagnosed?
  • The following day an oncologist was called in and ran the necessary tests. I learned he had Multiple Myeloma while I was in route and changing planes in Nevada. I had never heard of MM. We realized after the fact that Dave had been having benign, non-descript symptoms for several months. He had a received a complete physical in November 2007 and was diagnosed in June 2008.
Where have you received treatment?
  • Little Rock, Arkansas, UAMS/Myeloma Institute for Research and Therapy
  • Sutter Medical Group, Sacramento, California (maintenance therapy)
Explain your treatment history:
  • 6/2008: Started Thalidomide/Dex
  • 9/2008: Consultation at UC Davis, Sacramento
  • 10/2008: Consultation in Little Rock, Arkansas
  • 10/2008: 19 HBOT treatments to counteract radiation treatments impediment to collect stem cells for ASCT (see attached U of Penn article)
  • 11/2008: began stem cell collection (successful HBOT treatments produced 47 million cells in 75 minute collection)
  • 12/2008: Autologous Transplant #1
  • 02/2009: Bridge Therapy
  • 06/2009: Bridge Therapy
  • 09/2009: Autologous Transplant #2
  • 12/2009: Maintenance therapy commenced, Revlimid (continuous) and weekly Velcade infusions combined with Dexamethazone.
  • 03/2010: Ceased use of Dex due to toxicity and side effects (bloating, edema, constipation, insomnia)
Why did you or your doctor choose a specific treatment?
  • We were not aware at the time of novel therapy, non transplant approaches. So we only researched where and who would perform the ASCT.
  • I worked for the University of Maryland at a research center and wanted to have the advantages of a researching physician vs. a treating physician.
What has been the side effects of the different treatments?
  • All the usual culprits. Constipation, due to pain meds and disease, fear, suppressed immune system, hair loss, PN (handled with Alpha Lipoic Acid and Vitamin B6, B12 and foilic acid), etc. Nothing out of the ordinary or extraordinary. Fatigue is still the biggest issue Dave is dealing with now. He breezed through his second bridge therapy and transplant. It was pretty much a non-event for him and we were discharged to go home early both times.
What has been the hardest thing about your MM journey?
  • Dealing with the emotional issues of having "cancer". The learning curve of dealing with a "rare" disease and finding information that is current and optimistic.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • Don't accept the first information criteria you receive, but challenge and search to find the right physician/facility that align with your personal health issues and outcome goals. Find survivors and contact them directly. They have no agenda except to share their experience. Realize that Myeloma is a very fluid disease treatment and look for someone who is up to date and will tailor treatment for your particular presentation and goals. Be strong, persistent and garner support from friends, family, strangers and other myeloma patients and caregivers to help you negotiate your journey. Pick your path and dedicate yourself to it. Be flexible and patient through your process. Know that it will indeed end, you will come out the other side. There are countless others, thousands, who have gone through it before you and survived. Don't spend your time worrying about things that might be, but are not. Deal with what is in the present. Find others like yourself to garner support and understanding. Remember that your caregiver needs support as well. He or she is going through a lot and they need to stay well, nourished (spiritually and physically), and healthy. You are in this together. Everything Dave and I went through was "we". WE have Multiple Myeloma and WE are in Complete Remission. While our journey's are distinctly different, they are also tightly parallel.
  • When you are done, please, go out and live your life! Don't let Myeloma define you, relegate it to an EVENT in your life, epic certainly, but an event nonetheless. Give back when asked and if moved to do so, but don't let it become anymore consuming than it already has.
How have you been able to stay positive and encouraged in your MM journey?
  • Absolutely. I know no other way. My mantra these past 18 months has been "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." - unknown The challenge was keeping Dave positive and getting his "head in the game!" I knew Dave would get treatment. I knew that he could win. Convincing him was my challenge and my role as his wife, friend, lover and caregiver. He is my hero. I'm incredibly proud of all that he has overcome in the arena of positive attitude, stepping into realms he never dreamed in a million years he would be facing. Some have written that just telling a person they have cancer is enough to kill them. I watched him wither away mentally and physically right before my eyes in a matter of days. I joyfully watched him, take the bull by the horns and turn it around.
After being diagnosed... What perspective was changed the most?
  • Immediately after diagnosis, a dear friend of mine called who is a top Internal Medicine Physician in the DC area. My son, who went to school with her son, drove over to her house, unannounced, to tell her what had "happened". She called me immediately and the first thing and last thing she said, very emphatically was, "Lori! Multiple Myeloma is no longer a death sentence!" It was this basic premise that kept me moving forward and dragging Dave along in his treatment with the total conviction that we would come out the other side. My perspective has not changed, but has been validated and confirmed. Dave did get his head in the game and has done an outstanding job of appreciating all that he has accomplished. He tells people that he is "taking his life back!" I remind him that we don't have to take it ALL back!
  • You are stripped NAKED of everything unimportant in your life. What you are left with is love, family, friends. When you come out the other side and are standing at the top of the abyss you have just climbed out of and look across the beautiful vista before you, you realize how strong and capable you are. Its a great time to take a moment at embrace all that you are grateful for and then move forward, always forward.
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?
**To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil

Saturday, June 19, 2010

The Gem....continued :)

I just received results from my recent bone marrow biopsy that showed my plasma cells are at 2.4%, which I was total is in the normal range (less than 3%). This is great news! Now it's time to complete operation domination by eliminating my body of the M-Protein. Sucks to be you Myeloma, Hasta-la-Never.

Below I am dominating Myeloma on my porch with the wicked new dominate shirt from dominategear.com. Thanks Zak for creating these shirts, taking orders and shipping already 100 of them out!


Thank you so much to the faithful blog commenters from the last post. I love comments and I listen! So per the request, below are some photos of Ruby over the last 6 weeks. She is now 7 weeks old!!





Friday, June 18, 2010

At your request...

We interrupt this myeloma fest to update you on the other all-consuming issue in our household... the kiddles. (We talk way more about these cuties than we do about cancer. Believe dat.)

Ruby is seven weeks old. I forget that she's still brand new to planet Earth... it feels like she's always been here. She's rather lovely and delightful. Her best friends are Ocean and the ceiling fan in our living room. She loves to be held and does NOT like to be put down. So I get next to nothing done but I don't really mind 'cause lookie:




Ocean making her laugh.



And here's Frick and Frack:




Don't let those sweet smiles fool you. In the last week they have been caught chewing bubble gum in Iris's closet during naps, flushing foreign objects down the potty and putting glue stick on their hands and feet in an attempt to climb walls like Spiderman.

I love them.

Here's video of Iris singing the Thomas the Train song. We bribed her with cheese. We are good parents.

video

Thursday, June 17, 2010

2nd Half Kickoff: Monday, June 21st, 4:30pm

For those who have been tuning in to the Dominate Army vs. Multiple Myeloma, the second half of the game will kickoff this coming Monday with high dose chemo followed by my second bone marrow transplant in less than 3 months. Here's me kicking off against Michigan State in 2002....I think the final score was A LOT to 3....advantage Michigan!


It's very fitting that this weekend I'll be up at Spartan Stadium watching the 2010 Michigan High School Football All-Star game. They will be interviewing me at halftime where I will get yet another chance to say Multiple Myeloma 27 times in front of a pretty large audience. For all those with MM, we need to continue to speak up and educate folks about the disease.


This week I was blessed with the opportunity to speak with both teams and their coaches about what it means to Dominate and how I have been able to turn life's obstacles into opportunity. Just standing next to these guys made me feel like a scrawny former kicker. After I am through SCT #2 I am going to hit the iron until you can't recognize me!


Wednesday, June 16, 2010

My(eloma) Buddies

I still remember the commercial back in the 80's for "My Buddy". It would go: My buddy (My Buddy), wherever I go, he's going to go! And then of course there was "Kid Sister" that came to the market as well.


The good news is that Paula of Feresaknit's Blog has provided a much cooler replacement known as Myeloma Buddies and she is sending all of the proceeds to the Cancer Kicker Foundation....how cool is that?!?


Ocean, Iris and Ruby all have their dolls as seen below. Ocean's has earned the name Wolverine and the other two dolls will be named later.


These Myeloma Buddies are already traveling the world and becoming stars at events like ASCO. Just check out Dorothy who is mothered by the Adventures of Cancer Girl. If you would like to see more pictures or even order a doll, go here. We plan to add the Myeloma Dolls to the dominategear website soon.

Tuesday, June 15, 2010

The Dominate Army

Zak, President of the Cancer Kicker Foundation, used the term "Dominate Army" today in one of his facebook posts on the Cancer Kicker Facebook page and it really struck a cord deep within me.

One year ago July we were in Little Rock, AR seeking a second opinion from the renown, eccentric, caring and hilarious Dr. BB who recommended we start treatment immediately after uncovering over 100+ bone legions throughout my body. The cancer had gone from smoldering to a nice warm campfire. We decided it was time to dominate Multiple Myeloma.


Through this pursuit a force or "army" has been raised to help us build momentum and maintain some sanity. Even still today our church, family, friends, neighbors, co-workers, former teammates/coaches, medical staff are committed to bringing us meals and whatever we need as we sort through the chaos of being young with MM...which is allowing us to focus on one thing, dominating MM.


We are so thankful for the recent media attention that allows us to be a voice for this disease which is often mistakenly called "multiple melanoma". All of this could not happen without all the support around us. I think Matt (here's his caringbridge & blog), a young MM patient from Columbus said it best:
"I feel terrible for Myeloma. It's messed with the wrong people."
That's dead on Matt, Myeloma messed with the wrong people and now it has a whole army to respond to, the Dominate Army!

Thanks everyone for joining forces to dominate MM. -Phil

Monday, June 14, 2010

Channel 7


http://cancerkicker.org
http://dominategear.com

Myeloma Mondays #20: Frank from Brookline, MA

Where were you born and raised?

  • Born in Dorchester, Ma. Raised 15 miles south of Boston.

Where do you currently live?

  • Currently live in Brookline, Ma. One half mile from Fenway Park.

When were you diagnosed and how old were you?

  • I was 54 when diagnosed in December of 2002.

Did you know what MM was prior to diagnosis?

  • Had not a clue.

Is there anyone else your in family with MM?

  • No.

What led to your diagnosis?

  • I was bench pressing, (attempting to), and experienced sharp pain in my upper right rib cage. Felt a hard round bump between ribs which I self diagnosed as a popped cartilage. Finally went to my primary care Doctor who sent me immediately for a scan and I was operated on to remove a plasmacytoma from my chest. Had to take sections of two ribs with it. I tell people I was in a knife fight.
How many times were you referred before actually being diagnosed?

  • One…
Where have you received treatment?

  • Dana Farber Cancer Institute in Boston.

Explain your treatment history:

  • 1-6-2003, surgery to remove tumor from my chest.
  • 3-1-03 – began 20 days of radiation.
  • Five years in remission
  • April – May 2008, checkup reveals protein spike. Scans show small lesions on three vertebrae.
  • June – July 2008, two cycles of radiation
  • Sept. 2008, began six months of Rev plus Dex. Omeprazole for heart burn and a once a week antibiotic.
  • April 2009, stem cell harvest attempt failed. Became ill because of dehydration. My fault.
  • May 2009, Cytoxin,much neupogen, self injected daily, and another similar, more potent drug the night before the next harvesting attempt.
  • June 2009, successful harvest.
  • July, Meeting with Oncologist to schedule transplant and labs show numbers look great. Postpones tp.
  • Monthly blood work and Zomeda.
  • March 2010 labs showed proteins up; looking forward to labs being taken tomorrow, 4-30-10.

Why did you or your doctor choose a specific treatment?

  • Oncologist wants to avoid wearing out a drug. Early history, my mm was not aggressive until relapse.
What has been the side effects of the different treatments?

  • Radiation: fatigue towards the end of treatment; rash on area radiated.
  • Rev: stomach, dry mouth, … muscle cramps mostly at night. Minor consideration in view of Rev’s success.
  • Dex: I’m told I became impatient, edgy, anxious and less fun to be with. I was oblivious.
  • Cytoxin: hair loss. Came back curly and wiry texture. Has returned to normal.
  • Zomeda, mild joint and bone pain and light flu like symptoms for a day after.

What has been the hardest thing about your MM journey?

  • Hate to admit it, but the hardest is waiting for the other shoe to drop. For example, I think I have put off some fun things in order to avoid missing work, (and have been able to work full time other than two weeks after the operation and during the stem cell harvest), to avoid becoming expendable, or expended..
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

  • Stay positive and do the things you want to do. I went on line to investigate my newly diagnosed mm back in early 2003 and took less time off, took less trips and so on, thinking I did not have enough time remaining to be “frivolous”. The treatment discoveries for mm are providing significant control of the disease and new drugs are coming into use that are even more potent. Here I am seven years after diagnosis, training for the Pan Mass Challenge, 190 mile bike ride to benefit the Dana Farber.
How have you been able to stay positive and encouraged in your MM journey?

  • Keeping my schedule busy, as it was before mm; enjoying the support of family and friends; meditation or some kind of spiritual connection.

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

  • I think you worry more about those you love than about yourself. My ambition to be successful, to gain wealth and power, has been replaced by wishing nothing more than walking with my kids, or listening to my wife talk about her day. I’ve come to enjoy a daily predawn walk with my dogs and in particular, on the icy cold mornings, face first into the clean, cold air .

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

  • I worked as a roofer going through college. In those days we ripped old tar and gravel industrial roofs off, without respirators of course, and replaced them with asphalt and stone. This required melting 100 pound “kegs” of solid asphalt in a vw sized machine we called a “kettle”. We all breathed in the fumes and worked shirtless in the blazing sun, never getting sunburned because the asphalt particulate from the smoke would cover you with a dirty, dry soot that acted as a sun block. It would be an interesting study to find some old roofers and analyze the population for mm.

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

*Read other Myeloma Mondays by going here.

**To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email tocancerkicker at gmail dot com. I would love to share your story! -Phil

Saturday, June 12, 2010

Two Days, Two Blogs...watch out!

We are finding it very difficult these days to find the time and energy to blog. Also, I realize the longer you go without blogging, the harder it is to put the ink to the paper because there is so much to cover. So rather than hash out what has gone on over the last two months since I had my first stem cell transplant, I'll try to do a better job documenting this continuous cancer journey.

Below are some photos that that mark today's journey which included a visit to good old Schembechler Hall, the Big House and Washtenaw Dairy.

Ocean weighing himself in the Michigan Football locker room. He has cleared 40 lbs officially.

Ocean walking down the tunnel (on the left) into the Big House.

Ocean enjoying the sun in the Big House.

Iris and Ocean relaxing in the Michigan Locker Room at the Big House. If they only saw what the locker room looked like when I was there.

A view from the newly added luxury boxes at the Big House. Anyone want to donate their seat?

Ending the day with some ice cream from Washtenaw Diary...yum.

Friday, June 11, 2010

Funeral, Chickens and My 60 Day Test Results

What an emotional week. I am back in the saddle at home with not much energy to chase the kids around. Cassie was a champ with all three kids for four days as I flew to Florida to commemorate the life of my Grandpa George and share in family time. I was given an opportunity to speak at the funeral and share how my two grandparents, who were both only children, started something known as the Brabbs' Family which today includes 17 grandchildren and currently 10 great-grandchildren. Although I was born and raised several states away from my Grandpa George, it was made clear this past week that I am very much similar to the man he was and that I hope to be. On a lighter note, my uncle Jeff hosted my parents and me at his legit guest house which is home to three chickens (shown below) that provided some awesome breakfast (eggs) served up by my uncle Jeff.


Yesterday, I had bone marrow biopsy #5. I really don't mind them, partially because my PA at UMCCC knows how to dominate the procedure without dominating me. Those results will be on there way in a few days and will tell us what percentage of Myeloma plasma cells still exist in my bone marrow. Below is a picture of me waiting to see the BMT Doc, showing of my new watch which was given to Grandpa George for his High School Graduation at Flint Central. I am also wearing a silly band which I just learned about. I think the dominate bracelets are much cooler!


Also, I received my 60 Day (from transplant #1) test results and my M-Protein dropped from 0.6 to 0.5. This is positive because it is showing that my body is responding to the high-dose chemo (Melphalan) that I received. My goal is still to get this to 0.0 after my second transplant and some consolidation (more low-dose chemotherapy). I feel like I am at the mid-point of my treatment and I am very excited with the results although we still have a little more way to go.

On a side note, there are some really cool things going on with the Cancer Kicker Foundation as the Facebook Fan page is now over 4,o00 members and almost all 100 dominate shirts have been pre-ordered. I must say all of this work on CKF has been dominated by Zak Branigan who is such an inspiration and good friend to our family. Cassie is sporting her dominate shirt today and she looks hot for having Ruby only 6 weeks ago. Score.