Day +36

I have reached day +36 which means 36 days post transplant that occurred on April 7th. I met with my BMT doc on Monday and I also had my catheter removed. I will receive my "numbers" on Friday which will enlighten us a little as to how effective the transplant was, although I was warned that the true results won't be fully realized until day +60. We are looking for my M-protein to hit zero....which is where it is for someone without MM.

In stead of trying to find the words in my chemo brain to help describe how I am doing, I thought I would just get real and go with video. Before you hit play, I should mention that my Myeloma buddy, Jodi, had a WBC count of 1.0 yesterday at Day +21. That is HUGE because her bone marrow biopsy showed that the stem cells didn't graft. She's not out of the weeds quite yet, but this is a very positive sign. Thanks everyone for your prayers.

P.S. I'll try my best to get Cassie to appear in the next VLOG. She's looking mighty good for having just had a baby and is well worth showing off to the WWW.

Myeloma Mondays #15: Kirk from Russells Point, OH

This Myeloma journey is brought to you by Tiffany, Kirk's wife. I have had the good fortune of following along with them in their journey since diagnosis and I must say they are a very strong couple was are battling this disease at a very young age with a very young child at home.

Where were you born and raised?

• Kirk was born in Columbus, Ohio, but has lived most of his life in Russells Point, Ohio (Indian Lake, Ohio).

Where do you currently live?

• Russells Point, Ohio

When were you diagnosed and how old were you?

• Kirk was diagnosed with MM on December 1, 2009. He was 42 years old. He is type IGA Kappa.

Did you know what MM was prior to diagnosis?

• Fortunately, no.

Is there anyone else your in family with MM?

• Kirk’s family has dealt with cancer, but not MM.

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

• During the summer of 2009, Kirk was experiencing terrible lower back pain and spasms that would leave him bed ridden for days. Then his ribs began to feel as though they were popping in and out, his mouth was covered in canker sores, and he lost approx 30 pounds.

How many times were you referred before actually being diagnosed?

• We had one visit with a family physician who advised us to see a chiropractor. After three months of adjustments and extreme pain, our chiropractor recommended a bone scan that led to an MRI that led to basic x rays. Because of Kirk’s age, a medical professional did not recognize the symptoms of MM. Finally, Kirk became very lethargic and dehydrated. I rushed him to an emergency room, and a simple blood test revealed a calcium level of 14. Testing and eight days spent in the hospital confirmed the MM.

Where have you received treatment?

• The James Cancer Hospital (OSU) in Columbus, Ohio

Explain your treatment history:

• 12/2009: Started Velcade/Dex/Revlimid
• 3/2010: Completed 5 cycles of Velcade/Dex/Revlimid
• 4/2010: Autologous Transplant #1

Why did you or your doctor choose a specific treatment?

• Based on Kirk’s age and health, our doctor decided an autologous transplant would be the best means for long term survival. It has not been decided yet, but we are hoping our doctor will agree on tandem transplants. Our goal is not for the five or even ten year remission – we need Kirk around for the next thirty plus years!

What has been the side effects of the different treatments?

• Extreme fatigue and slight neuropathy in the hands and feet. We feel pretty blessed by the lack of side effects up to this point. Kirk’s back pain has been an ongoing problem related to the cancer, not the treatments.

What has been the hardest thing about your MM journey?

• My husband is asleep next to me on Day +7 of the stem cell transplant, but I believe the most difficult thing is saying goodbye to our old life where things felt safe and constant. I now realize it was a naïve frame of mind, but I miss it.

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

• Embrace the treatment because it feels empowering when you are finally taking the right steps toward fixing the problem. The worst time for us was the uncertainty of what was going on inside Kirk’s body. Once he was diagnosed and his treatment began, we felt as though we were finally moving to a more positive place – and we felt ready for the fight.

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

• I am not going to lie – this is a realization that is very difficult to accept. And we still have our good days and our scary days, but our little boy is a wonderful source of joy for us! He is a daily reminder to Kirk that he must fight the good fight. We have a very strong support system of family and friends, and we also feel very positive by the recent advancements in research toward a cure for MM.

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

• About a month ago, Kirk and I were returning home from work, and Kirk realized that he forgot our house keys at the restaurant we own. He felt annoyed (after a long night of work) that we had to go back. It was a beautiful night, my mom was with the baby at home, and I just felt grateful to be in the car alone with my husband for just a few moments longer. I feel SO MUCH MORE appreciative of the time we have together, and I really enjoy the moments in life that feel normal and regular – like forgetting your keys somewhere.

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

• Kirk has been around asbestos and pesticides, but not for extended periods of time.

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

• Nick’s Myeloma
• MM for dummies
• Multiple Myeloma Blog

*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 to cancerkicker at gmail dot com. I would love to share your story! -Phil

I am alive and so are the bracelets!

Cassie and I have been overtaken by the addition of a third kid tossed on top of the already chaotic, but fun, responsibility of parenting the lovely Ocean and Iris. What this means is we are way overdue for some blogs sharing how things went with my two week hospital stay during my bone marrow transplant and what it's been like a month after. I promise they are coming sooner than Cassie's 32 hour labor with Ruby!

In the meantime, we did order more Cancer Kicker - dominate Bracelets! To get your 73 bracelets click here. Make sure to send us photos of you and your loved ones dominating like these people. Ocean is a big fan of the new shipment, as you can see:

P.S. Please pray/send positive thoughts/whatever for a MM patient named Jodi. She is around Day +18 from transplant and her numbers are still not coming back. She is a relatively young Myeloma patient with a lot of life ahead of her. Thanks everyone.

Myeloma Mondays #14: Richard from Spring Hill, Florida

Where were you born and raised?

• I was raised in Queens, New York but have lived in Florida for the last 25 years.

Where do you currently live?

• I currently live about an hour north of Tampa in Spring Hill, Florida.

When were you diagnosed and how old were you?

• It was last July 2009 and I was and still am 58 years old.

Did you know what MM was prior to diagnosis?

• I had never heard of it before.

Is there anyone else your in family with MM?

• There has been cancer in my family but not MM.

What led to your diagnosis?

• Extreme fatigue. I was overcome by waves of fatigue for about 5 months.

How many times were you referred before actually being diagnosed?

• I had gone to my primary doctor about 5 times because I was feeling tired and my anemia levels were low. I and he for awhile, attributed it to side effects from my blood pressure medication. Finally, in July of last year, he told me he wanted to get it checked by a hematologist. At the time, I was not aware that a hematologist dealt with cancer until I arrived at the Florida Cancer Institute. Then I knew I might be in a bit of trouble.

Where have you received treatment?

• I have received my treatments at the Florida Cancer Institute in Spring hill under the care of Dr. Vikas Malhotra, who along with his staff is very supportive. I had my stem cells harvested at Moffitt Cancer Center in Tampa in Jan. 2010.

Explain your treatment history

• 8/2009: Started RVD Revlimid (25 mg)/Velcade/Dex
• 1/2010: Harvested Stem Cells
• 3/2010: Resumed RVD (10mg)

Why did you or your doctor choose a specific treatment?

• When first diagnosed, my doctor, Dr. Malhorta told me about these new novel agents, He told me that they offered me the best chance for a prolonged remission. He has recommended a transplant and I have talked to Dr. Alsina at Moffitt about it. I have responded fairly well to my initial treatment and will wait until my numbers go up before scheduling a transplant. Currently, my M-spike is .1 from 1.6 in July.

What has been the side effects of the different treatments?

• I am not sure what has caused the side effects either the Rev/Vel/ or Dex but I have had the following side effects:
• PN -- Peripheral Neuropathy (better since dose adjusted on Velcade) but still a problem.
• Rash/Itch -- This was very troublesome but has since disappeared. The itch was unbearable at times.
• Fatigue --This never goes away.
• Passed out -- When I stopped treatment to harvest the stem cells, I passed out a few times.
• Severe stomach and back pain -- This was fairly recent. It lasted 24 hours (probably a bug) and I was very close to going to the emergency room.
• Lack of appetite -- I have lost over 50 pounds since July. I was extremely overweight but with the med's I have lost the taste for most foods. It is the one thing I really miss.

What has been the hardest thing about your MM journey?

• There are a number of things that have been difficult. One is the fatigue levels which really prevent me from doing many activities. Another is the impact on my immediate family. My wife (Susan), 2 daughters(Lisa and Carly), brother(David) and in-laws (Frank and Eleanor) have been very supportive but it has impacted our lives mostly in a negative way. Dealing with the financial ramifications of this disease have been difficult as well. Being unable to work, has created a great financial hardship on my immediate family. Finally, I really miss enjoying foods like pizza, steak, etc. Other than that it has been fun.

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

• Learn as much as you can about this disease. Blogs like yours (MMforDummies) and Pat Killingsworth's Multiple Myeloma blog have been very supportive and educational. It is important to have confidence in your doctor and have an extremely supportive family. It was overwhelming and depressing at first (still is) but the more you learn about it, the easier it can be to deal with.

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

• It has been difficult at times but with the help of my supportive group, I have tried to stay positive and focused. I enjoy reading (mainly historical biographies) and have read over 60 books since July. I am also a baseball fan and enjoy listening to Bruce Springsteen and Frank Sinatra.

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

• Enjoying life to its fullest when you are able. My mother used to say "When you have your health, you have everything". I think I realize that now, there is a lot I want to do and hopefully I will be able to do some things in the near future.

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?

• Pat's Myeloma blog
• Planet Myeloma
• IMF site
• Myeloma Beacon
• Leukemia(LLS)

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

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 #12: Deborah from Tiburon, CA

Where were you born and raised?

• Cleveland Ohio

Where do you currently live?

• Tiburon, California

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

• October 31st, 2009. 58 years young

Did you know what MM was prior to diagnosis?

• No.

Is there anyone else your in family with MM?

• No...I think my mother may have had it.

What led to your diagnosis?

• I had been sick for over a year. I went to every doctor I could think of, but everyone turned me away or passed me on to someone else. My Obgyn finally gave me the right test, and told me I would have to see one more doctor to see what was wrong with me. She knew.

How many times were you referred before actually being diagnosed?

• At least 7 times.

Where have you received treatment?

• Kaiser Hopsital in San Rafael, Ca.

Explain your treatment history

• 11/2009 Velcade 2x weekly.
• 11/2009 Orivia (sp?) 1x monthly
• Starting Autologous transplant 5/2010

Why did you or your doctor choose a specific treatment?

• Because I have chromosome damage.

What has been the side effects of the different treatments?

• Dizziness, confusion, nausea, vomiting, dirrarhea, loss of appetite, weight loss (yay).

What has been the hardest thing about your MM journey?

• Having to go to the hospital 3x a week. It's like a job!

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

• Stay positive, find out what works for you, and accept the help you need!

How have you been able to stay positive a.d encouraged in your MM journey?

• Support from loved ones.

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

• That people who don't find an answer, should go back and find one!

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

• Besides being raised in a smoke-filled home, no.

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

• This one!

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

Well. That was fun.

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

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

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

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

Myeloma Buddies!

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







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

Myeloma Mondays #11: Tim from Fairlawn, NJ

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

Where were you born and raised?

• Elmwood Park, NJ

Where do you currently live?

• Fair Lawn, NJ
  

When were you diagnosed and how old were you?

• August 2007, 2 months after my 40th birthday, Stage III, Protien 8000, 50% of plasma cells in marrow.

Did you know what MM was prior to diagnosis?

• No

Is there anyone else your in family with MM?

• No or any other cancer

What led to your diagnosis?

• Lower back pain, had tumor and compression fracture on L3

How many times were you referred before actually being diagnosed?

• Was diagnosed pretty quickly. Orthopaedic called our primary doc with the results of the MRI who in turn called my husband to come in immediately for blood work and went for BMB the next day and to the oncologist 2 days later.

Where have you received treatment?

• Hackensack University Medical Center, Myeloma Division under the care of Dr. David Siegel.
• The Valley Hospital in Ridgewood, NJ

Explain your treatment history

• Aug 07 thal/dex
• Sept 07 12 rounds of radiation
• Nov 07 Kyphoplasty to repair fracture
• Dec 07 finished last cycle of Thal/dex
• March 08 auto stem cell transplant
• Aug 08 auto stem cell transplant
• Every 3 months IV Zometa
• Aug 09 started receiving vaccinations again
• No maintenance drugs and have been off all meds since just after 2nd transplant

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

• Given Tim's age and how well he responded on thal/dex we thought it was the best chance for remission. Originally our doc gave us the option to do an allo for the 2nd transplant but he said he thought the auto would be better and we decided that we didn't want to take the risk with an allo anyway.

What has been the side effects of the different treatments?

• Surprisingly my husband has a rock iron stomach and the only side effect was heartburn and neuropathy in his feet. Even through both transplants his only complaint was heartburn. Doctors would come in and laugh when Tim said he felt fine except maybe a little tired and only complaint was heartburn and that was it. All the other patients had a long list of ailments and they could barely eat and Tim ate all his meals.
  

What has been the hardest thing about your MM journey?

• Telling our kids. We have 2 children ages 15 and 10. At the time our son was 13 so we told him once we knew what was going on but in the simpliest of terms and did not go into detail. Our daughter was only 8 and she knows that he has something wrong with his blood and had to get it fixed.

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

• Do your research and don't settle for just any doctor. We were lucky enough to find great doctors right from the start who truly cared and were there for us with any and all questions. Also don't be afraid to ask questions, make a list and bring it with you to your doctor appts.

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

• Through the support of family and friends. By reading other people's stories. My husband and I are and have always been the kind of people to joke around and we continued that through this journey.
  

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

• Don't sweat the little things, spend as much time with family and friends as possible, the laundry and cleaning can wait.

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

• My husband is a plumber

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

• www.cancercompass.com

***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

TEDx Talk Now Online

TEDxUofM 2010 :: Phillip Brabbs from TEDxUofM on Vimeo.

Myeloma Mondays #10: Chuck from Tampa, FL

Where were you born and raised?

• All over the place. My father was in the Air Force. I was born in Enid Oklahoma. I lived in Florida, The Phillipines, Japan, Ohio, Indiana, New Jersey and Illinois all by the time I was 18. I call Illinois home.

Where do you currently live?

• Tampa, Florida

When were you diagnosed and how old were you?

• Diagnosed 11/19/2008 - age 46 - IgG Kappa

Did you know what MM was prior to diagnosis?

• Heck no!

Is there anyone else your in family with MM?

• No

What led to your diagnosis?

• broken clavical - disc golf

How many times were you referred before actually being diagnosed?

• 0

Where have you received treatment?

• Moffitt Cancer Center, Tampa, FL
• 11/??/2008 - clinical trial - CVDD (cyclophosphomide, Velcade, Doxil, Dexamethasone) + monthly zometa
• 3/2009: Completed 6 cycles of CVDD
• 6/2009: Autologous Stem Cell Transplant
  We achieved very good partial response and am on no maintenance therapy.
  Initial IgG - about 5900
  Initial M-spike - 3.9
  High Protein in Urine

  After Induction Therapy
  IgG -normal
  M-spike - 1.3
  High protein in Urine

  After SCT
  IgG - Normal
  M-spike .2
  Urine protein - normal
  Freelite ration - normal

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

  
  All numbers have been stable since transplant. When the numbers start rising again (by a factor of about 25%) my Doc will recommend to resume treatment.

  Right now, quarterly testing- Urine/serum/..

Why did you or your doctor choose a specific treatment?

• I believe in clinical trials. All the drugs in the trial are already approved for myeloma treatment. I'm relatively young and with two teenage boys, this combination is relatively well tolerated which would allow me to continue to work and care for my boys.

What has been the side effects of the different treatments?

• CVDD was well tolerated. I had no nausea, some fatigue, some hair loss. The Dexamethasone was not pleasant. I became irritibable and not too pleasant to be around when "crashing". But listen to my girlfriend and that's my normal nature! So, I don't know :) No issues with the Zometa.

What has been the hardest thing about your MM journey?

• It's hard to tell if the initial shock and discouraging results of initial internet searches regarding what to expect, was harder than living with this disease and never knowing if the next test will bring bad news.

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

1. Stay positive.
2. Don't believe everything you read.
3. Get involved. The International Myeloma Foundation, The Multiple Myeloma Reasearch Foundation, The Luekemia Lymphoma Society are great resources for all types of help.
4. Stay informed.
5. Question your Doctors about anything and everything until you are comfortable.

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

• Stick my head in the sand and pretend I don't have Multiple Myeloma! Now that's not too realistic, I know. Continue to work, raise my children, love my girlfriend, maintain hope that cure will become available while I'm still around to get it.

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

• Living with the knowledge that most likely I'll die earlier than I assumed.

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

• Yes. Cornfields as a teenager. I remember running behind the mosquito fogger (DDT I presume) as a child.

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

• MMforDummies, Nicks Myeloma Blog, Living with Multiple Myeloma, IMF, MMRF, LLS

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

Guess who came to visit?

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



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

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

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

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

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

Is Daddy still sick?

I froze.

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

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

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

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

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

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

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

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

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