Thursday, June 23, 2016

Th Original Beast Mode

I talk about going into beast mode for my Kilimanjaro training. Beast mode is a mind set. It's best described by the originator of beast mode, Marshawn Lynch, recently retired NFL running back. Follow the below link and watch the video. Enjoy.

Over and over and over




Wednesday, June 22, 2016

Wilbur Ties the Knot

I'm pretty sure I've mentioned Wilbur before. He's a friend's rescue Basset. The friend is John DiNunzio, who is a bike planning extraordinaire located on the Central Coast of California. John sent me this picture of Wilbur's recent wedding, marrying Jazz. Thought I'd share.




Lowered Immune System Effects

My treatment and the myeloma mean I am typically immune compromised. During my week off, I'm usually ok. But for a week or so after treatment, my immune system is low and I need to be cautious and stay away from environments that may have lots of germs.


Caution will only get me so far. My body has viral crap that is normally dormant in my system. Wouldn't even know I have the virus. But the low immunity gives the crap a chance to come out of hibernation. For me, it's viral warts. Over the past couple of years, they've popped up in strange places. Toes, private parts, etc. Yesterday I noticed them coming in on a finger. This is new. This is also very maddening. My fricking finger? Come on, give me a break! I need to make an appointment with dermatologist. Until then, no shaking hands. That I can live with. But no high fives. That sucks.


We're constantly searching for foods and supplements that will boost my immunity. It's a topic that cancer docs don't really get into. So I and we are left to our own devices. If I discover something, they only thing I can get from the doctor is if whatever I discover impacts the kidneys or how a supplement interacts with my cancer drugs.



Tuesday, June 21, 2016

The Mysteries of Myeloma

I like to think that after 5 years I have this myeloma thing figured out. I understand my treatment and how it's going to make me feel. I know what to look for in my labs. And I think I generally can gauge how I am doing by a variety pack of symptoms. Then there are days like today. I have chemo later this afternoon. This past weekend  I got in two good hikes. Yesterday  I felt good, no lingering achiness from the hikes. This morning I should feel great. But my body and legs ache again and I'm a little worn out. WTF?  But that's the thing. We never really know how we might feel day to day and what is the cause. I'm basically on cruise control with treatment. I'm healthy enough to climb a mountain. But you can never relax and not think about myeloma. I've asked other patients who have had the disease for a decade or longer if they are ever able to go a day without thinking about myeloma. And the answer is no. It's always hanging out in their thoughts. Freaking annoying. Today's aches and pains are unexplainable. It's just one of those things. I'll go to the gym before chemo and try to work things out. A little stretching, movement and exercise should help.


Support my Mt Kilimanjaro Climb to Raise Money for Multiple Myeloma Research Foundation

Sunday, June 19, 2016

Training in Palos Verde

Heat and hills today. Kicked my ass. But I did it. One step at a time. 




Friday, June 17, 2016

Beast Mode for Kilimanjaro

It's an off week from chemo. It's my break between days 1 and 15, if you're interested in schedule. My creatinine this week was 3.22. Tied for the lowest it has been since I was diagnosed. That's fantastic, means the myeloma is under control. Nice results as time passes and my 5 year cancerversary is distant in the rear window.


As much as possible, I've attempted to work out and stay in shape this whole time, even during chemo weeks I try to get some semblance of a work out.  Of late and necessarily, my workouts have been kicked up a notch. Cardio and leg stuff specifically is the focus. And here's where I can tell I am getting older and I have cancer. It's a bear. Gone are the days I can get in shape lickity split. Last weekend was particularly difficult. My bounce back from chemo usually occurs 3-4 days after treatment. I do chemo on Tuesdays. But last weekend, I was  achy and tired the whole time. I tried to do my Kilimanjaro training, but it was super tough. I felt a bit defeated and was wondering why I thought I could do this.


But! This week is totally different. I can tell I'm finally getting stronger and my cardiovascular capabilities are increasing. Now I'm pretty confident I can do this. In 3 weeks, the Kilimanjaro team is going to Colorado for team building and training hikes at high elevation. Kilimanjaro is 19,000 feet. While in Colorado we'll get up to about 14,000 feet. This will definitely be a test for me. I'm always low on blood..ergo less oxygen to keep the muscles moving.  I need to stay in beast mode.


Speaking of Kilimanjaro, I've reached $5,000 in fund raising. Half way to my goal. If you're interested in learning about why I am climbing or if you want to make a donation, simply go to:
Matt's Mt Kilimanjaro Climb for the Multiple Myeloma Research Foundation

Sunday, June 12, 2016

Thursday, June 2, 2016

5 years 1 month

Now it gets complicated. What image do I use for 5 years and 1 month since diagnosis? I'll tell you what, this myeloma is the gift that keeps giving. Physically I'm pretty good. I'm waiting for this month's lab results. Tomorrow is Berenson. Next week, we start another cycle of maintenance. Kilimanjaro training is in full force. Beast Mode.  But I'm generally tired, my gut is always a little funky from all the different meds I take. My mood is pretty good, although I can be a bit snappy lately.  I realized that while I dream of the day I don't have to work and can take daily naps, I need a plan. What's my hobby? What's my passion? How will I spend my time? That's my goal this weekend, to put that vision together.

Wednesday, June 1, 2016

Port Pillows

For those with ports, we know that it makes life easier by allowing us to not be constantly poked. For me the port is vital. The veins in my right arm don't work any more and my left arm is off limits, given I have the (no longer functioning) fistula, put in by a previous kidney doctor in case I needed dialysis. Knock on wood, no dialysis. But having a port also can make normal things awkward and challenging. This is a story about a woman who is helping with one of those awkward issues.

http://www.detroitnews.com/story/life/2016/05/30/young-mom-steps-solve-problem-cancer-patients/85177352/

Monday, May 30, 2016

Cure Talk on Relapsed Myeloma

Tuesday May 31 at 2 pm west coast time/5 pm east coast time, there is a Cure Talk Discussion about relapsed myeloma:
Recent introduction of new therapies has significantly improved outcomes for patients diagnosed with multiple myeloma. However, cures remain rare in myeloma and most people may eventually relapse. If we can better understand how and why myeloma grows back, there is hope that relapse can be prevented and thereby eventually improve the long-term outlook for myeloma patients. The myeloma panel is talking to Dr. William Matsui of Johns Hopkins University School of Medicine on why relapses occur after several years of remission and how they can be prevented.

The link to join this discussion is: http://www.curetalks.com/event/rsvp/Preventing-Relapse-in-Multiple-Myeloma/252/?upcoming=yes

Sunday, May 29, 2016

Wow

5 plus years. Wow. Non stop chemo.  5 years with question mark over my head. Talk about physical and mental challenge. Crazy. 

Saturday, May 28, 2016

One size does not fit all

Myeloma is a very unique cancer and manifests itself differently in most people. As such treatment is tricky and there is no normal and no right way vs wrong way.  Having a myeloma specialist on your team is one definite rule. 

And Kiliminjaro training begins...

Wednesday, May 25, 2016

Latest Post from Bill McHugh

Bill is a myeloma friend. He's doing well and has an awesome attitude about living with the disease. Last year he climbed the Empire State Building stairs to raise funds for the MMRF. He doesn't necessarily post a lot on his blog but when he does, it's always great stuff. I can relate to his approach and attitude.

His latest is worth reading. Take a look:
Stop Being Selfish

Thursday, May 19, 2016

Kilimanjaro..Time to Get Serious

One of the challenges with myeloma is that I'm almost always walking around with a lowered immune system. I need to be extra careful to stay away from people who are sick and other germs sources. Admittedly I can get a bit lackadaisical with this. But when I'm hit with two months of being sick and worried about pneumonia, as I was earlier this year, I get serious again. Being immune compromised also means I am susceptible to the activation of normally dormant viruses in my body. Two years I had a surgery to remove viral warts that were out of control. By far the recovery from this surgery was the most painful thing I have ever experienced. Ever!

This week I had a repeat of the surgery. I've been dreading it. The first time I had this surgery I was out of commission for three weeks. I guess we caught them early this time, because at 3 days after surgery, I'm feeling pretty darn good. It's been a totally different experience.

I've slowly been starting training for Kilimanjaro. Cardio, walks, hikes. But I wasn't engaged 100% in the training because I knew I had the surgery and recovery ahead of me. But now that recovery is almost behind me, training starts in earnest next week.  Beast mode. We've got a team training hike in Colorado in July. I'm looking forward to meeting my fellow trekkers. One of the team members lives here in Long Beach and we met a couple of weeks ago and did some hills in nearby Signal Hill. All the other team members are spread out across the country. There are 15 of us. 6 are patients. I'm almost halfway to my fund raising goal of $10,000. I'd like to blow past that number, which I think is totally doable.

This week is also my off week from chemo. Last week was day 1 of cycle 20 of maintenance. Last week I also had to make a visit to the dermatologist to freeze off a bunch of pre-cancerous spots on my face. Sensitivity to sun and susceptibility to skin cancer is a side effect of my treatment. I always need a hat when I'm outside and I'm thinking I need to get stylish with my hat selection. Embrace the lid.

This past week I was promoted at work. I'm now the manager of land use planning at the Port of Long Beach. I've said it before, I'm proud of my success at work over the past five years (since diagnosis). It's a big deal. I take pride in my kicking ass. Having said this, work can be a challenge, especially during treatment week, when my energy and mood are roller coastering. And I'm still needing greater meaning in my existence. In my interview I was asked about my presentation style and if I chose it or did it choose me. Interesting question. My answer was a) conversational and b) it chose me. And I realized that is how I feel about my cancer and life going forward. I sure didn't choose it, but I have to work with what has been dealt me. I must make some plans and define goals to keep moving forward. Again...beast mode.

And that's it. Nap time.

Saturday, May 14, 2016

Cure Talk May 19

Cancer drugs cost more than $100,000 per year and continue to increase. Medicare has proposed major changes to Medicare Part B in an attempt to slow the explosion in healthcare expenditures. In addition, a recent “report” by a group called ICER (Institute for Clinical and Economic Review) has issued a 139 page “DRAFT” of a report attempting to evaluate Multiple Myeloma, its treatment protocols, drug cost comparisons and QALY (Quality-Adjusted Life Year). The results of ICER’s research may have serious implications as their recommendations are trusted and used by payers and may be influencing CMS (Center for Medicare and Medicaid Services) decision-making. Dr. Rajkumar of Mayo Clinic is on CureTalks to help educate doctors, patients, and the general public on what these programs are and how they might affect the doctor patient relationship.

http://www.curetalks.com/event/rsvp/What-you-need-to-know-about-the-ICER-report-and-its-implication-on-insurance-coverage-and-treatment-options-for-myeloma-patients-/253/?upcoming=yes

Monday, May 2, 2016

5, Five, V, Cinco

May 2. Today. Five years since my cancer/multiple myeloma diagnosis. What a fricking journey and learning experience. I'm still here, still strong, still kicking. Wow. That's about all I can say. Tonight I'll pause to evaluate and plan.






Wednesday, April 27, 2016

Cancersplaining

It's been a little bit since I gave my update. In concise bullet format, here you go:


  • Yesterday I wrapped up cycle 19 of maintenance. Rev, dex, velcade.
  • Cycle 19 was delayed about a month because I had back to back illnesses. The fear is always pneumonia, so we did chest xrays, delayed chemo and added a couple of inhalers and antibiotics to the mix. Everything is clear.
  • While sick, my myeloma numbers jumped up enough to worry us. We were basically a flip of the coin away from changing my chemo regimen. Consensus among me, Leslie, Phan and Berenson was to stick with maintenance. Follow up laps showed my numbers heading back down. Labs this week will be very telling.
  • I finally feel perfect after two months of being sick. 
  • I do myeloma labs later this week, see Berenson May 9.
  • I'm working out and training hard. I weigh about 190, need to get to 180 by summer to be in beast mode for serious Kilimanjaro training.
  • I've raised over $3,000 for the Kilimanjaro climb. There are some real generous folks out there. The minimum goal is $10,000, but I'd love to blaze past that number. Here is the link if you're interested in reading about the climb or would like to donate.  http://support.themmrf.org/site/TR/EnduranceEvents/EnduranceEvents?px=1607203&pg=personal&fr_id=2330
  • If you prefer writing checks, you can send these to me and follow these instructions: Checks should be made out to MMRF. Be sure to include the name of the event and the team member name on the check so that your donation will be recorded correctly. (for example:   Matt Goldman. 2017 Kilimanjaro).  Please note that all donors who pay by check will always receive a thank you letter documenting the tax deductible contribution for any donation over $25.  My address is Matt Goldman 2137 N Studebaker Rd, Long Beach, CA 90815
  • Unfortunately I have surgery scheduled May 17. This is a repeat of surgery  I had in summer 2014. That was the most painful and horrible experience in my five years of being a patient. My challenged immune system means that shit, that has been quiet and dormant in my system for years or decades, has a chance to flourish. Thus I get viral warts in my lower region that require surgical removal. They are not nearly as bad as they were in 2014, so we (I) am hoping for less pain and a speedier recovery.
  • Once I recover from the surgery, Kilimanjaro training is on. No fucking around!
  • I cut beef and pork from my diet about a year ago or so. It has to do with both health and animal cruelty. I've always loved animals, but that love never translated to what I ate. In the past few years, I just can't imagine eating animals. After reading about how chickens are treated an abused, chicken is now out of my diet. Today is day 1.
  • The challenge is that my kidneys are still jacked, so I need to watch what I eat. Beans, nuts and soy are basically off limits. So that limits a bit where I can get my daily protein. A friend of my mom mentioned satin, a plant based protein, that we have to research. I need foods low in potassium and phosphorus.
  • I'm increasing my water intake. I got a bit lax. Water intake is super important for flushing those kidneys and keeping the creatinine down.
  • May 2 is my five year date from my diagnosis.  In the words of Joe Biden "That's a big fucking deal".  I've thought a lot about life and death. Five years is serving as my spring board to embracing life. I can't dilly dally. Must be a doer.
  • Also, please, I don't mind people asking how I am doing or even for details. Depending on who you are, you may get the stock answer "I'm ok" answer. But if you want more detail, go ahead and ask. The myeloma shit is a freaking challenge 24/7. But I'm ok with all of it.
  • Also along the lines of asking me how I am doing, I don't need sorrys. As I said, I've reached an agreement point with the cancer. I ignore it. It ignores me.
  • Also, and here is where it gets to a tricky gray area. I also don't want a complete lack of acknowledgement. Texts and emails saying hi and checking in are always appreciated.
  • Meanwhile life goes on. I still work. Last month, Leslie's dad was in the hospital. He's good now. Recently my Uncle Jan had a heart attack and quintuple bypass. He's at home recovering and doing well. Life is a lot. But we're doing it.




Wednesday, April 20, 2016

We'll Miss You Max

This past weekend we celebrated my mom's 80th birthday. She is an amazing, talented and energetic person. Her energy and drive is something we all should strive for, no matter our age. But it was a bittersweet visit, I said goodbye to Max, who's been with my mom for 17 years. He was a happy, loving, sweet pup. I and we are truly going to miss him. He went to doggie heaven yesterday. Bye Max.








After Cancer Diagnosis, This Woman Saw the Seven Wonders of the World in 13 Days

While I sit in my cube day after day after, working, fighting fatigue, wondering about the meaning of life, some people use their cancer diagnosis to whole heartedly embrace life and adventures.


Here is one such story:


http://www.travelandleisure.com/trip-ideas/adventure-travel/seven-wonders-world-tour

Thursday, April 14, 2016

Wednesday, April 13, 2016

Channel Your Inner Tiger

Charlie Sheen made Tiger Blood a thing. It's your inner tiger.  I've actually tried to adopt it. You can't fuck with a tiger.


Anyhow, thought I'd share something that I found entertaining and helpful.


http://www.upworthy.com/7-ways-thinking-like-a-tiger-can-help-you-start-your-week-right?c=utw1&utm_content=bufferd1b82&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer



Monday, April 11, 2016

An Honor for Bradstrong

It's been about 9 months since my friend Brad Coustan passed away from myeloma. It remains a shocking and devastating loss. Even now, when I feel myself losing motivation to stay strong and healthy, I think about Brad and what he'd say or do.  Last night I had a little talk with myself. I told myself to work harder and to not let this challenge get to me. Brad was a powerful force and stopped at nothing to be a good person, husband, father and myeloma fighter.


This past weekend, his community honored him by dedicating the scoreboard to Brad at the local baseball field. Here is the article on the event.


https://www.tapinto.net/towns/westfield/articles/westfield-baseball-dedicates-gumbert-field-scoreb




Wednesday, April 6, 2016

International Myeloma Foundation Webinar



In one week on Wednesday, April 13th at 7:00 PM EST the IMF will be holding a webinar titled “NIH Funding: How It Benefits You as a Patient”. This webinar will focus on the importance of advocating for research funding at the National Institutes of Health (NIH), and how certain programs, such as grants for young, emerging researchers and funding for clinical trials, impact myeloma patients. We will have corresponding engagements available so patients can contact their legislators and ask them to support NIH funding.


Register Here

Saturday, April 2, 2016

Thursday, March 31, 2016

Restless Leg Syndrome

Interesting article. My legs move and twitch like crazy at night. Various reasons. One is reduced kidney function. I can check that box.


http://www.iflscience.com/health-and-medicine/what-restless-leg-syndrome

Friday, March 25, 2016

Flexibility Required

It's been a while since I updated folks on how I am doing. In short...the same. I've done 17 cycles of maintenance and all my numbers look the same. Stable is good. But when we zoom in, the stability is not without bumps. As I write this I am wrapping up a week at home. I was sick with a bad cold a few weeks back. Nothing horrible, although I did miss a couple of days of work. But then this past weekend I developed a small cough. The cough actually started on Saturday after spending the day riding bikes at a Long Beach event. I'm sure the adult beverages and not having enough water didn't help.

By Sunday it was a more painful cough. Monday I went to work and the cough was worse. I also felt a temperature coming on. Checked it and it was 100.5. Went home and it was a bit higher. We made a quick visit to Dr Phan who prescribed an antibiotic and a chest x-ray.  Pneumonia and infections are two big things we myeloma patients want to avoid. About 5 PM Monday, I had the worst chills and shakes that I've had since I was diagnosed. That night around midnight my fever spiked to 104. Emergency room or not. That was the question. We decided to stay at home, take some tylenol, cold shower and try to get my body temperature down. Dr Phan always said that if my temp hits 101.5 or higher, that I should be in the hospital, But I opted for staying home. A little risky I suppose.

By Tuesday morning, my temperature was almost normal and the cough was much better. we had a visit with the pulmonologist that afternoon. He said my chest x-rays looked clear, but he did prescribe a more powerful antibiotic and inhaler. He also said to stay home for the rest of the week to ensure my body and immune system had recovered. Phan and I agreed to put off chemo for a week..again to give my immune system a chance to rebound. Now it's Friday and I've almost completed the week at home. Feeling way better. I was able to get some work done while at home. And I watched one of my favorite movies, Life or Something Like That for about the tenth time,

Meanwhile towards the end of April, I am having repeat surgery on my booty. When I had this surgery two years ago it was the most painful thing I'd experienced. Nothing even comes close. This time shouldn't be nearly as bad, So they say.

Meanwhile, training and fund raising for Kilimanjaro has started. This is scary on its own. Not a day goes by that I don't think about not doing it. But it's important to stick with it. We actually have a team hike coming up in July. A little early in the training for me, but it's aimed as a weekend of team building. Yikes, I'm not a big team person, but I'm gonna make it work. This climb has already tested many of my insecurities and fears. And I suppose that's point of it.

I've been fortunate that I'm doing as well as I am. I recognize the seriousness of my myeloma. But I think I have also built a bit of denial into my brain. I say I've accepted the myeloma. But when that fever hits and I get the chills, I definitely get a little scared. These were my symptoms right before I was diagnosed. Leslie talked to Berenson. We're running my myeloma labs. Berenson said a check for me is how my creatinine looks. Well, as of today it is 3.44. For me that is great. Myeloma is in check. I'll get the remaining results next week.

For now, I stay calm, get well and remain flexible. My routine is going to be interrupted. As always Leslie did an amazing job of taking care of me. She dealt with me being sick the week after her dad was in emergency. He's home and fine. I need to stay healthy so Leslie can focus on her health.

I'm just 6 weeks away from my 5th anniversary of being diagnosed. Whoot whoot. I'm going to be in the 50% survival rate beyond 5 years.  And that's my update. No change overall, but the devil is in the details.


Sunday, March 20, 2016

Mt Kilimanjaro

Here is a fantastic documentary about this year's Mt Kilimanjaro. It's a an amazing journey.

Saturday, March 19, 2016

Mt Kilimanjaro!!!!!!!

I'm excited to announce that I've been selected to be one of 6 patients on  15 person team that will be climbing Mt Kilimanjaro in February, 2017. The climb is being put on by the Multiple Myeloma Research Foundation. It's an honor and will be quite a challenge. I'm excited and nervous.

Mt Kilimanjaro is over 19,000 feet high. I'm always low on blood, so that worries me a bit. We'll make sure my counts as up before I leave on the trip. I've got to get in great shape and I have to raise at least $10,000. I have work to do!!!

Here is the link for my MMRF fundraising page and to get more details on my effort and reasons for accepting this challenge.

Sunday, March 6, 2016

Brackets Against Myeloma

One week from today is Selection Sunday, when the field of 68 teams is picked for the College Basketball Tournament, aka March Madness.  This year I'm using March Madness to raise funds for the Institute of Myeloma and Bone Cancer Research. $20 per bracket. Half of funds go to the winner's pot and the other half is donated to the IMBCR.  Click here for details.

Wednesday, March 2, 2016

58

Today is March 2, marking 58 months since my diagnosis. Been fighting a cold, but almost over it. In the middle of a chemo cycle.


On March 2 1958, Senator John F Kennedy was awarded Man of the Year by the Polish Daily News in Chicago.







Wednesday, February 24, 2016

LLS Southern California Blood Cancer Conference March 19

The Southern California Chapter of the Leukemia and Lymphoma Society's annual blood cancer conference is scheduled for March 19 in Anaheim, California. It's important to note that the LLS's focus include Multiple Myeloma, even though it's not in the name. Someday this will be fixed.

Nonetheless it's a good conference and there are sessions on myeloma. The conference is free.There will be various tables and booths, including a table for the LLS First Connection program, which matches newly diagnosed patients with experienced patients. It's a great program that I wish I knew about when I was diagnosed. Speaking with experienced patients can help alleviate some of the fears and concerns that come with a diagnosis. And I'm not just saying that because I'm a First Connection volunteer and will be at the table the morning of the conference.

Here's the link to the conference information and registration.

LLS Blood Cancer Conference

Myeloma Crowd interview with Dr. Berenson

The Myeloma Crowd is a patient-driven initiative to help educate and support multiple myeloma patients.The goal is to simplify complex information and arm patients with important and current information about myeloma in order to help them obtain optimal outcomes.
The Myeloma Crowd and CrowdCare Foundation were created by myeloma patient Jenny Ahlstrom. The Myeloma Crowd now features a wealth of content contributed by other myeloma survivors including Lizzy Smith, Gary Petersen and other patient contributors.
Myeloma Crowd recently interviewed my doctor, Dr Berenson, to talk about myeloma, his treatment philosphy, and an important new test, BCMA, for tracking patients and potential outcomes.The interview is about an hour long, but is absolutely worth a listen. Berenson takes a different path than other myeloma specialists and his positive results in treating patients is among the best.Gary Peterson is a myeloma patient and maintains a terrific website that tracks survival rates for myeloma specialist and hospitals. Here is a link to his website.  

Myeloma Survival
With regard to this interview, multiple myeloma is typically tracked by measuring the M-protein, also called the "M-spike." But in some patients, the M-protein gets lost, making it difficult if not impossible to detect myeloma levels without a bone marrow biopsy. Dr. James R. Berenson, MD of the Institute for Myeloma & Bone Cancer Research has been working on a new test (assay) and has found direct correlations between levels of BCMA and the M-spike. He also has identified new clues that BCMA levels can provide related to outcomes within specific patient populations. Learn more in this show about a new and potentially easier way to detect myeloma, which would be incredibly valuable for the non-secretor. (Note I don't have an M-spike and I am kidney impaired, so each visit to Berenson I give research blood for BCMA tracking. I'm currently on his maintenance regimen which he discusses towards the end of the interview) 
Here is the link to the interview: 

Berenson and BCMA