This describes it all. I feel Wildly Blessed. Cheers to domination.
This describes it all. I feel Wildly Blessed. Cheers to domination.
Several months ago several individuals alongside the UMCCC develoment office had the idea of getting a team of dominators together to participate in the Annual Dexter-Ann Arbor Run who want to take on the mission of Cancer Kicker: Inspire others and Kick Cancer…specifically Multiple Myeloma.
I thought this was a great idea and that if 10 people signed up, I would run the 5k. I also foolishly said if 20+ sign up to take on this charge, I would run the 10k. I must admit, I was expecting just a handful of people to be up for this challenge. Well…guess again. We already have 50+ people signed up and I am sure that number will continue to grow.
That means….I need to start running some serious miles over the next 4 weeks. The race is at the beginning of June and right now I am slugging through 3 miles, once per week. Before I started the onslaught of chemo I ran in the Big House Big Heart 10K with a bunch of friends and we managed to push strollers the whole way and finish right around 50 minutes.
My goal this time is to finish. To keep my body moving forward the whole time, without walking. If over 50 people are willing to join the momentum we are building to dominate MM for good, I can find a way to get through this race! If you want to join, it’s not too late (instructions here).
Time to go for a run. -Phil
Where were you born and raised? Born: Stuttgart, Germany (US Army); Moved to Salisbury, NC when I was 9 months oldWhere do you currently live? Salisbury, NCWhen were you diagnosed and how old were you?11/10/2009 – age 42, IGG KappaDid you know what MM was prior to diagnosis? No, I had never heard of it.Is there anyone else your in family with MM? No.What led to your diagnosis? Extreme pain in my back/sacrum. Turns out I had a compression fracture of the T-12 and 4 tumors in my sacral area; along with tumors in both my humeri and fibula and lesions on most of the flat bones in my body.How many times were you referred before actually being diagnosed? 3Where have you received treatment? Wake Forest University Baptist Medical Center’s Cancer Care CenterExplain your treatment history:
11/2009 – started first of 10 radiation treatments to the tumor in my left humerus12/2009 – started first of 35 radiation treatments to the 4 tumors in my sacrum12/2009 – started first of 4 cycles of Velcade-Doxil-Dexamethasone2/2010 – received melphalan in preparation for stem cell harvest4/2010 – autologous stem cell transplant7/2010 – vertebraplasty for T-12 compression fracture7/2010 – tried maintenance Revlimid 10 mg (failed – neutropenic)8/2010 – radiation to stubborn tumor at T-10 (10 treatments)8/2010 – 12/2010 – off and on the maintenance Revlimid 5 – 10mg with poor results2/2011 – finally able to stabilize on 5mg of Revlimid3/2011 – increased Revlimid to 10mg (and side-effects begin) failed again5/2011 – re-started Revlimid 5mg dosageWhy did you or your doctor choose a specific treatment?
I requested to be treated aggressively. I was “young” and in great shape before this took me down. I thought I would be up and running again in no time.What has been the side effects of the different treatments?
With the VDD/radiation treatment, the biggest side effect was fatigue. I also had styes on both eyes that my hemalogist-oncologist related to the velcade. The chemo put me into a post-menopausal state, which has remained.Once I had the melphalan, nausea was the worse followed closely by the loss of all my tastebuds.Now with the Revlimid, the fatigue is back.I continue to have back pain and spot tenderness at the sites where the tumors were located.What has been the hardest thing about your MM journey? Accepting that I cannot do the things I loved to do before — rafting the Gauley; hard-impact exercises; hardscaping my lawn; walking my big dog, Joe. Accepting that I may not be able to work like I worked before. I have had a hard time embracing “new normals.”Fear of relapse has been pretty constant. I really wish they would re-do those statistics!What are the top lessons learned that you would want a newly diagnosed MM patient to know about?Stay strong in spirit…you will get through the treatment.It’s ok to lean on others for a while.Seek someone outside your inner circle that you can talk to…a counselor, spiritual leader, etc. Someone you can really vent to without having to worry about worrying them.How have you been able to stay positive and encouraged in your MM journey?
I am one of the lucky ones to have a supportive family – parents, sisters, husband, son – who have walked this whole journey with me. I also have great friends and neighbors who have been there for me and Jeff, too.My dogs, Gus and Joe, were wonderful companions. We started calling Joe, Dr. Joe, because he was constantly by my side when I was at my sickest. His 88-pound body actually was very healing. It was like a full-body compression heating pad.After being diagnosed… What perspective was changed the most?
Priorities. Prior to diagnosis, I was a workaholic. I worked 10 – 12 hour days in a stress-filled job, and loved it! Now, I would rather spend my time with my friends and family…spend time in nature…spend time with my dogs. I’ve decided to just be good at work and great at wellness for the rest of my life.Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
Yes. Prior to going into hospital administration, I was a horticulture therapist. I handled a lot of pesticides, fungicides, herbicides, and fertilizers.Immediately prior to my birth, my father was in contact with Agent Orange in Vietnam.What MM sites or blogs had you found good information from after diagnosis?Myeloma BeaconMMRFCrazy Sexy Cancer (Kris Carr) – not a MM site, but a different way of dealing with having an incurable cancer
After several months off of maintenance recent labs show everything to be unchanged. My M-Spike remains at 0.1 and my other numbers look solid. The real good news is that the neuropathy I was feeling in January, has gotten much better. I am sure 14 months of intense treatment just caught up with me, so the little break was probably needed and definitely enjoyed.
I have been slow to document how things have been going, mainly because with the reduction of cancer treatment, life has picked up. A third kid in the mix takes away from much of the free time I experienced in the past. I find myself cooking pancakes “with syrup mistakes” in the morning for Ocean and helping him get ready for school and the day ending with a hour routine to get the kids in bed. By 8:00pm I am pretty spent and Cassie and I use this time to watch a movie or read together.
All in all we are returning to our new normal. I am still very passionate about putting an end to Multiple Myeloma. I have given several talks over the last few months to help build Multiple Myeloma awareness and encourage people to push through their own life struggles. That has been very rewarding.
Lastly, we celebrated back to back birthdays this past week. First, our precious gem, Ruby, turned 1!!! She continues to smile in delight and shower her love and joy on anyone willing to receive. Following her birthday we were blessed with the birth of another nephew. His name is Eli Philip and he already has the “Hail” and “Go Blue” fist pump down and he is not even a week old.
I hope everyone continues to dominate and if you are interested, let me know how you are doing by leaving a comment!
Geert with his little duck pottery with football and helmet (almost blue and maize) in a small souvenir shop in Spain last year.
Where were you born and raised? In was born 1965 in Hamburg, Germany Where do you currently live? Hamburg, Germany – I´m still living in Germany´s most beautiful town When were you diagnosed and how old were you? (example: 8/8/08 – age 28, IGG Kappa) 08/12/2009 – age: 44, IGG Kappa Did you know what MM was prior to diagnosis? I even haven´t heard a word about it Is there anyone else your in family with MM? No, nobody What led to your diagnosis?
Nothing specific, I´ve just been weak all the time How many times were you referred before actually being diagnosed? Just one time. My doctor sent me directly to the hospital and the first blood test showed the MM indicators Where have you received treatment? Asklepios Hospital, Hamburg, Germany
Explain your treatment history:
09/2009:3 cycles PAD01/2010: Autologous Transplant #104/2010: Autologous Transplant #2
Why did you or your doctor choose a specific treatment? Fortunately our team of doctors is really experienced and we have a dedicated ward for stem cell transplants. So, the decision was based on the “typical” criteria (staging, etc.) and the doctor´s experience What has been the side effects of the different treatments? No, side effects at all What has been the hardest thing about your MM journey? The first days after diagnosis when I and my family started to understand what it really means. What are the top lessons learned that you would want a newly diagnosed MM patient to know about? Accept the situation and don´t start asking yourself questions like “Why me? Why in the age of 45 when the average is 71?”Find a team of doctors you really trustLearn about MM and treatment options but choose only “trustworthy” sources and discuss “your” findings with your doctorsStart to fight MM, comply to the rues the doctors give you and finish your treatment planNever quit!!
How have you been able to stay positive and encouraged in your MM journey? From the first day till complete remission – With the help of my wife, daughters, family and friends. As soon as possible live your normal live even during times of chemo and during hospital stays. In times of cell phones and internet it is quite simple to stay connect when being in hospital. I´ve used internet video telephony to talk with my daughters because they were not allowed in the transplant ward. I also follow the various sport seasons on the internet. For me it also worked quite well to stay in contact with my colleagues and see progress on the projects I used to work for before and between my hospital stays. But not all these things might work for other MM patients as well. Everybody has to find his own way but I hope some of my ideas will help. After being diagnosed… What perspective was changed the most? Some things became less important but today (one year after the last HDCT/transplant and with great results) it is pretty much as it was before. Of course from time to time I think about MM but not too much. When time is limited why should I waste it by thinking about MM all the time. The thing I have changed is that I fulfilled some of my plans/ dreams. After being in Ann Arbor and the Big House I wanted to also see a game at Penn State. That´s what I did last year. Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis? Maybe my father during WWII What MM sites or blogs had you found good information from after diagnosis? The IMF website and on facebook and the DKMS on facebook
Last summer I received a phone call from Vada Murray after a little phone tag. We had no problem connecting. Both of us were diagnosed with cancers that were not very fitting. Vada, a non-smoker, was diagnosed with lung cancer and I received a diagnosis of Multiple Myeloma at 28, forty years younger than the majority of MM patients.
Playing football at Michigan and a freak diagnosis were not all we had in common. We both happened to have three kids, the oldest being a boy, followed by two daughters. I could not help but feel connected with him.
During the one and only conversation we had he stated that this was a battle he was not going to win. I really had a hard time hearing that. It’s a reality with those taking on cancer…He knew his fate.
Last week Vada Murray passed away. Today as I attempted to give tribute to him and his family at UM’s Relay for Life I broke out in tears for a man I hardly even know, but feel so close to. It hurts to think about his family right now.
My speech was focused on the Fight Back theme of Relay for Life. It was very fitting. Thinking of Vada makes me want to Fight Back. I have always just wanted to dominate, but now I also want to fight back for him and his family. I don’t have a lot of words right now for what that means, just tons of emotion probably centered on feelings of injustice for what his family is having to go through.
For all those who can make it, there will be a memorial service this Thursday at 11:00am at Cliff Keen Arena.
No April Fools…I am alive and well.
I recently have been logging hours back at work. I am focused on customer upgrades to a new version of our software. Throughout the week I will hear nothing about upgrades and in my status meeting that I facilitate I always enter it not knowing what to expect. Although, 90% of the time if I haven’t heard about something prior to the meeting, no news is good news.
That’s the case with the project we took on last year to re-boot my immune system and dominate Multiple Myeloma. The reprogramming process is going well, albeit I have been dodging sick kids left and right over the last two months. All there is to report is a little neuropathy which we are throwing a lot of Vitamin B at and postponing maintenance.
Most of my time is centered around the kids and coming alive as a dork again by growing interests in what Cassie reminds me are dorky things like studying Customer Development in my spare time. So life is returning to our new normal. It hit me last night that three kids is like three points in space that create a flat plane (unless they are linear of course, Phil = dork). With one and even two kids, we had a lot more freedom, but with the third, our playing field is set and now we can focusing on growing a fun and awesome family.
To that end I have enjoyed every moment of every day that I get to hold and interact with Ruby. She turns 1 this month as I head towards my one year anniversary of my first bone marrow transplant. Cassie and I cannot even recall any memories of Iris until she was two, so we are gobbling up Ruby time. Although we may not ever believe Iris existed prior to age 2, I am falling more fondly in love with this girl the older she gets. She now says that she loves me, but only in addition to mommy. She’ll even kiss my knee from time to time. Last weekend we went out on a date to her restaurant of choice and she even dominated a sundae…yum!
Ocean continues to grow and mature at a speed unknown to man. I now know what it means to be extroverted. He can’t get enough daddy time and he wants to do everything that I am doing. So he’s a little dominator in training with a great sense of humor. Last week when I took him to school he got all the kids calling him “bobble head” in stead of Ocean.
I hope everyone else is well and still dominating! I hope to engage the MM community more as our life continues to stabalize after a year of colorful chaos.
Yet another young 30 something taking on Multiple Myeloma with two young and adorable children. One than turns 5 today! Jody is graciously documenting her story via her own blog; so add another trooper to the myeloma community that is going to help bring awareness to this disease and educate us all throughout her own personal journey to dominate Multiple Myeloma! Here is a detailed account of her diagnosis.
Jody’s Blog: M is for Myeloma
Where were you born and raised? Warwick, RIWhere do you currently live? Baltimore, MD (Also lived in Boston and Dallas)When were you diagnosed and how old were you? 12.22.2010, just turned 34. I’m hyposecretory Kappa light chain with numerous focal lesions. I have a t(11,14) translocation by FISH, and am low risk by GEPDid you know what MM was prior to diagnosis? As a research biologist with some background studying carcinogenesis I’d heard of it, but didn’t know any specifics.Is there anyone else your in family with MM? noWhat led to your diagnosis? I broke two ribs last summer. The first doctor to see me did mention multiple myeloma, but there were no smoking guns from the tests he ran and I don’t fit the demographic so he didn’t dig too deep.How many times were you referred before actually being diagnosed?I started having another painful spot at the end of October and I found myself a new doctor. He referred me to an orthopedic oncologist, who ran the SPEP and did a fine needle aspiration of one of my lesions. The SPEP was normal, but the lesion showed atypical plasma cells. He then referred me to a myeloma specialist at Johns Hopkins. I then went in search of several other opinions after doing my homework on different treatment approaches.Where have you received treatment?
Myeloma Institute for Research and Therapy in Little RockExplain your treatment history
I just started TT4 LITE.MVTD-PACE induction followed by stem cell mobilizationTandem ASCTVTD-PACE consolidationVRD maintenance for 3 yearsWhy did you or your doctor choose a specific treatment
The first doctor gave a very “choose your own adventure” recommendation. Start with a choice of 3 drug induction, do an ASCT immediately or wait until later, and consider maintenance therapy. By this time I’d done a lot of my own research, including finding lots of great blogs and websites and also reading a lot of the primary literature and scientific reviews on myeloma. I’d also had enough people mention Arkansas that I knew it needed to be considered seriously. I questioned my Hopkins doctor about it and she restated basically the concerns I’d heard repeated time and again. No one can say the outcomes are better, it’s harsh treatments, and you may risk something by using everything up front. I booked an evaluation and also an appointment at Dana Farber for a third opinion. In the end I knew Arkansas was the place for me, but I know it’s not for everyone.What has been the side effects of the different treatments?
I’m only 6 days in, so only very minimal. A tiny bit of nausea, a little tingling from the velcade, and pretty tired today. What has been the hardest thing about your MM journey?
Thinking of my family and how this will affect them, especially my kids (age 2 and 5).What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
Do your homework and reach out to other patients!! There are so many wonderful people out there willing to share their experiences and perspectives and it’s been so incredibly valuable contacting people. I can’t even imagine how difficult it is for someone who doesn’t know much about biology to get to the bottom of all the different treatment approaches out there, but make sure you ask questions and find a doctor who can take the time to help but things in terms you can understand. How have you been able to stay positive and encouraged in your MM journey?
At first it was not easy at all, but know I’m in a better place about it all. It’s not helpful to get stuck in the muck of feeling helpless and scared and sad. It is important to work through those feelings and to acknowledge them and address them, but you’ve got to able to move past them. My husband has been an incredible support and has helped pull me through some of that. In the end you have to accept the lot in life you have and do everything you can to life your life to the fullest and embrace every day. As a clinic nurse said to me the other day “tomorrow is not promised to me either”. After being diagnosed… What perspective was changed the most?
Gosh probably everything. I think living with cancer like this just makes me slow down and reevaluate the important things in life. I’m more dedicated to living in the moment. Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
I’m a research scientist so I’ve worked in many labs. I’ve worked with some toxic chemicals and also with cell lines containing human and animal viruses associated with cancer so there is definitely a concern that could have contributed. My father is also very worried that his exposure to agent orange in Vietnam could have been passed along to me somehow, but I think that’s very unlikely. I have a PhD in Environmental Health Sciences with a concentration in molecular toxicology so I am really interested in links to environmental exposures especially since more and more young people are being affected.What MM sites or blogs had you found good information from after diagnosis?Too many to list them all…this one of course, also Myeloma Beacon, International Myeloma Foundation***To add your story to Myeloma Mondays copy and paste this questionnaire (click here) and send it in an email to phil at cancerkicker dot org. I would love to share your story! -Phil
Today is an extra special day for us all. It was just over to 2.5 years ago when our lives were changed forever due to a disease known as Multiple Myeloma. I remember it very well. Rather than my life flashing right before me, I was troubled by the image of Ocean growing up without ever knowing his father and the devastation that could bring to his life. At the time of diagnosis, almost everything we read about Multiple Myeloma was doom and gloom. The life expectancy we consistently read about was 3-5 years. Below is Ocean a few months before we learned of my diagnosis which came on 8.8.08.
Well, we hardly believe those statistics any more thanks to aggressive therapy and new treatment options. Although, I do relish each additional year I am able to spend with Ocean, Iris and now Ruby. Ocean’s birthday is pretty emotional for me because it is a reminder that I cannot take for granted my time with him and that it could be snatched up in a moment’s notice. Today he turns 5 and although most people say, wow, time sure has flown…for me, I feel like the kid should be 10 by now given all that we have been through and experienced since he was born on Feb. 28th, 2006 in Concord, NC.
So cheers to Ocean today! This kid brings a lot of laughter and bright moments to our world that hasn’t been all smiles; albeit he makes us forget. The kid has been smiling since day one and I am certain that nothing will be able to stop him!
I recently learned that a wonderful man that I had the good fortune to connect with during my 2nd bone marrow transplant has lost his battle with mantle cell lymphoma. I celebrated with him and his wife the 4th of July over Mountain Dew, Pizza and some Rockband. Here’s the recording from that day. His name is Fred and his wife is rocking the guitar during the video.
Yesterday, I got the opportunity to meet his beautiful daughter who happened to graduate from U of M the same time I did. Their whole family seems so wonderful and my heart is very heavy for all of them as today and tomorrow they will have the showing.
Being on this journey with cancer is far from lonely for me. I now know hundreds of families in the fight. It’s days like this when I must take in the sobering reality that things don’t always end the way we would like.
The family has decided to pass out dominate bracelets to the people who attend the services. They are far from giving up life, instead, they are going to continue to dominate. I am so impressed.