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
 

Wednesday, February 17, 2016

Coming Soon..Brackets Against Myeloma

We're inching closer to March Madness time....College Basketball Tournament...Brackets. For the past 2 years, I've used the brackets and March Madness as a fund raiser.  Two years ago I raised money for the MMRF. Last year it was the LLS. This year I'm raising funds for the Institute of Myeloma and Bone Cancer Research. This is Berenson's non-profit research group.


I've averaged right around 100 participants. This year I'm aiming for 200. It's simple. $20 buy in per bracket. (You can do more than one). Half the funds go into our winner's pot, the other half gets donated. Definitely win win.


We're about a month away from the official bracket announcements. But for now I wanted to remind folks that this is coming up. Spread the word.

Monday, February 15, 2016

Patient Legal Handbook

 
The Cancer Legal Resource Center is proud to announce its newly published PatientLegal Handbook. This handbook is a resource for patients coping with cancer and provides valuable information about cancer-related legal issues that touch patients all the way from diagnosis through survivorship. This handbook is part of a project funded by Amgen'sBreakaway from Cancer program, a national initiative to increase awareness of important resources available to people affected by cancer -- from prevention through survivorship. The CLRC's new Patient Legal Handbook is also available in Spanish as InstructivoLegal del Paciente.  



About the CLRC
The Cancer Legal Resource Center (CLRC) is a national program of the DisabilityRights Legal Center. The CLRC provides free and confidential information and resources on cancer-related legal issues to cancer survivors, caregivers, healthcare professionals, employers, and others coping with cancer.  Visit www.CancerLegalResourceCenter.org for more information about cancer-related legal issues and services provided by the Cancer Legal Resource Center.
 
Contact the CLRC:
Telephone Assistance Line: (866) 843-2572
Fax: (213) 487-2106

Friday, February 12, 2016

Cure Talk Tuesday Feb 16

Everything you need to know about Daratumumab and Multiple Myeloma

FDA recently approved daratumumab (Darzalex) to treat patients with multiple myeloma who have received at least three prior treatments. Daratumumab is the first monoclonal antibody approved for treating myeloma and provides another treatment option for patients who have become resistant to other therapies. Our myeloma panel is talking to the father of daratumumab, Dr. Torben Plesner, on the use of this drug in treating multiple myeloma.




Register at: http://www.curetalks.com/event/rsvp/Everything-you-need-to-know-about-Daratumumab-and-Multiple-Myeloma/248/?upcoming=yes

Thursday, February 11, 2016

Rest In Peace Pat Killingsworth

"Feel good and keep smiling". This was Pat's sign off on every post in his blog. On Monday from the hospital, Pat wrote a post titled "I'm not dead yet".   This is what he wrote in that post:

The commonly used name here for plasmapheresis is plasma exchange. I'm being hooked up for my third, three hour round of plasma exchange. Honestly, I’m in pretty bad shape.
I’m not eating. I could give you a lot of technical information about my situation, but the bottom line is this: Five doctors and none can figure out whats’ wrong with me. Just passed out, woke up with laptop on top of me.
Your prayers and positive energy isn’t in vain. I feel it. So does Pattie. Thank you!
Feel good and keep smiling! Pat

Today, February 11, 2016 was Pat's 60th birthday. Pattie, Pat's wife, brought some of his favorite things to the hospital today. Today Pat also got his wings. Pat was diagnosed in 2007. From that point on, he devoted his life to helping other myeloma patients. He was a vocal and strong advocate.  When I was first diagnosed, like so many others, I was lost and scared. Pat was the first patient I discovered who I could relate to. He was always positive, but also very clear on his fate. After knowing Pat through social media, emails and conference calls, I met Pat and Gary Peterson in person a couple of years ago. They were quite a dynamic duo. Over the past years, I've gotten to know them both better. Gary has been keeping us all updated these past few days on Pat's condition.

Pat wrote books about myeloma, blogged, sat on patient councils and never said no to talking to fellow patients. That's the thing about cancer that I never expected when I was diagnosed..the powerful and supportive myeloma community. Pat was my friend, role model, mentor, and sounding board. We talked about how we would want the end of lives to look like. Pat's goal has always been to enjoy his life in Florida, to spend time with his wonderful wife Pattie, to hang out with his dog Finnegan and to continue with his advocacy.

Pat puts on an annual beach party, gathering patients and caregivers for a weekend to both celebrate life and to get smarter about our disease. Pat preached that we need to be our own best advocate. I hope we can continue with Pat's Beach Party and use this year to celebrate his life. I'll be there.

I and so many others are absolutely heartbroken and lost.  I'm going to do my best to honor Pat with everything I do. Whatever your faith or belief, please let's all say a prayer, light a candle, or take a moment to think about Pat and Pattie. Sad day.


Sunday, February 7, 2016

Tom Shell's post in the Myeloma Beacon

The thing about myeloma is that at times it feels like a never ending journey. But that's a good thing. If the journey ended, that would mean we lost the fight. We strive for normalcy. But our new normal compared to our pre-diagnosis normal is very very different.  For instance, I have a normal week ahead of me. Work, meetings, gym, walk Gracie, hang out with Leslie, watch tv. Normal right.

But this week I also have chemo. And I'll have the dex roller coaster. Thursday I have a dermatologist appointment to look at some odd bumps under the skin behind my left knee. Thursday I also will bring a 24 hour urine container to work. It's time to collect. Friday I turn in the urine and give 5 tubes of blood. That's the new normal.

Tom Shell writes for the Myeloma Beacon, which by the way is a great source of information about myeloma and to read about other patient's and caregiver's experiences. Tom recently wrote about his journey in his post This Ride Never Ends.

Give it a read.

http://www.myelomabeacon.com/headline/2016/02/02/myeloma-in-paradise-this-ride-never-ends/comment-page-1/#comment-59744

Friday, February 5, 2016

Pat Killingsworth's Blog

I'm not sure folks read or follow Pat's blog, Living With Multiple Myeloma. He has also written books on the topic. Pat is positive, forward looking and very honest. His blog was the first I read after I was diagnosed and after I was over the initial period when I didn't want to read anything about myeloma. Over the years I've gotten to know Pat pretty well. He's a good friend and a great person. He's going through some challenges right now, but I'm confident that he's going to get through it. That's how Pat does it. He perseveres and will continue to be an advocate, mentor and teacher for all myeloma patients.

His blog provides a lot of useful information about myeloma. He also documents his personal journey. I strongly suggest you take a look at it.  http://multiplemyelomablog.com/

Wednesday, February 3, 2016

Breaking the Cancer Stereotype

This is a post from a young cancer survivor, Ali Powers. She wrote this for Stupid Cancer, an organization that provides support for young adult cancer patients.  But I think her words are worth taking a couple of minutes to read.


https://blog.stupidcancer.org/breaking-the-cancer-stereotype-cf0a8957aea8#.rpv4m8dl3


When I tell people I have cancer, I normally get something like ‘but you don’t look sick” or “you can’t have cancer, you still have all your hair.” I normally just dismiss their ignorance and say thank you, but what I really want to say is…

What do you mean I don’t ‘look’ sick? Can’t you tell my insides are sick not my outsides? You mean you can’t tell by looking at me that my colon is missing? Or that My lungs have tumors in them? You couldn’t just see that by looking at me? Would it be better if I faked a limb to fit your idea of being ‘sick’? Thank you, I try hard not to ‘look’ sick. Oh and not every cancer patient looses their hair, I have been working on growing my hair back for the past 2 years thank you for noticing.

I was at an event where hey had a comfy chair label “Reserved, this chair is for those with Chronic Medical needs.” I believe having cancer counts as a chronic medical need. There were two chairs across the isle from each other. A lady with a cane came and sat in one. But I didn’t sit there, I took the hard chair instead because people there didn’t know I was sick. I didn’t look sick and I know I would be judged if I sat there. But why is that? Is it because I don’t fit societies stereotype of someone with cancer? I am not super sickly skinny and bald, or I don’t walk around with an oxeygen tube hanging from my nose. I don’t look like I am going to die. I have been there at one point. I looked sick. I was super skinny, you could see all my bones, You could see the effects of the chemo on me. I was 5'9, bald, 100 pounds and a size 0. I have been there, but I have also been 5'9, 160 pounds and a size 13 (thank you cancer & steroids.) I have been that stereotypical cancer girl, but that was 2 years ago. I still have cancer, even though I don’t look like that “sick’ girl anymore.

So where does society get its view point of cancer patients? The media is a big one. With movies like The Fault in Our Stars, My Sister’s Keeper, Me Earl and The Dying Girl which all paint cancer patients as a sickly, frail, bald person. When Chasing Life came out the biggest complaint was she didn’t loose her hair or look ‘sick’ fast enough. It took her a good 10 episodes to go bald and look sick. But why is this idea forced upon us? Is it not believable that a person who functions fine out the outside, who looks fine, who functions like every other normal person could be dying of cancer? Is that too hard to comprehend?

Each cancer is different, and everyone reacts differently to the medications. I have friends who were on the same drugs as me and I lost a lot of weight while they gained a lot of weight. They are also breaking the stereotypes. My doctors told me with my chemo I should be able to keep my hair. Unfortunately, I lost it, but they said most people on that type of chemo keep their hair. Once again, breaking the cancer stereotypes. Some people have cancer that is just a lump or a bump they get it removed and they dont lose their hair or lose a third of their weight. They are also defying the cancer stereotypes. Everyone’s cancer is different and we dont fit into one mold.

Sometimes I wish I had a visible illness so I could avoid the judgemental stares, the mean comments and the stereotypical remarks, but not everyone as a visible illness. Just because I look fine on the outside have you check out my insides lately, the part you can’t see? I may look fine on the outside but my insides don’t match. Just because my illness isn’t visible doesn’t mean it’s not there.

Tuesday, February 2, 2016

57

57 since diagnosis.  5 years is just around the corner and then we're on double bonus time.







Monday, February 1, 2016

Cure Magazine to Honor Multiple Myeloma Heroes

CURE Media Group, publishers of CURE magazine, is honored to be hosting the Multiple Myeloma Heroes recognition event at this year's 20th annual International Congress on Hematologic Malignancies® in Miami, FL. At this event, CURE will honor individuals who champion those affected by multiple myeloma.

Multiple Myeloma (MM) is a cancer formed by malignant plasma cells. It is the second most common blood cancer affecting approximately 24,000 Americans each year. The five-year survival rate of people with multiple myeloma is 47%. However, many factors influence an individual's survival, such as age and overall health.

The MM Heroes recognition program is accepting nominations for individuals who have gone above and beyond on behalf of the multiple myeloma community through February 17, 2016. At the close of the contest, the winners and the individuals who nominated them will join CURE in Miami Beach, FL to be honored at the annual MM Heroes recognition event!
Nominate your Multiple Myeloma Hero today!

Help to promote awareness of MM by rewarding the voices and actions of those who have driven advancements and made a difference!


http://www.curetoday.com/events/MM

Saturday, January 30, 2016

Powerful video about making end of life decisions

Below is a link to a video that addresses end of life decisions. It's a rap song borrowed from Rhianna and Eminem.

Give it a look.

http://www.kevinmd.com/blog/2015/07/this-is-the-epic-rap-video-that-will-change-how-you-feel-about-dying.html

Subtle Reminders

Tuesday was day 1 of the latest cycle of maintenance. The routine is the same. Insomnia Tuesday night. Wired Weds at work. A little tired Thursday and super tired by Friday. Yesterday I actually felt pretty good. Went to the gym in the morning. I feel like I'm in good shape and staying ahead of the chemo/cancer fatigue.  At work yesterday, I had a site visit with a whole bunch of folks. I had to usher them to an oil area in the heart of the port. Should of been a half hour quick visit. Instead it turned out to be 3 hours out there. 3 hours on my feet. And it wore me out. By the end of the day, I was beat. 3 hours doesn't seem like much, but given I was a couple of days removed from chemo, it made sense that I'd be tired. I forget sometimes what I'm dealing with. That's a good thing. But it was a subtle reminder that I still need to be mindful.  It's all good though.





Monday, January 25, 2016

MMRF Climbs Mt Kilimanjaro

This past week, a team of patients, doctors and advocates climbed Mt Kilimanjaro in support of the MMRF. Very exciting, very cool. Here is a link to a Facebook page with some photos.


Mt. Kilimanjro Trek #MM4MM 2016



Saturday, January 23, 2016

Wednesday, January 20, 2016

Myeloma 2015 Year in Review

Thursday January 21, there is a Cure Talk discussion with the MMRF reviewing the advances in Myeloma treatment in 2015.  It's at 3 pm west coast/6 pm east coast time.


Below is the link to sign up to listen.


http://www.blogtalkradio.com/curetalks/2016/01/21/myeloma-2015-year-in-review-with-the-mmrf

Tuesday, January 19, 2016

Cancer and Climate Change

The below op-ed is from the NY Times and is less about cancer and more about climate change. It's written by Piers Sellers, an astronaut and NASA scientist who was recently diagnosed with stage 4 pancreatic cancer. The article/op-ed is his reason for continuing to work on addressing climate change, despite his dire diagnosis.


http://www.nytimes.com/2016/01/17/opinion/sunday/cancer-and-climate-change.html


I’m a climate scientist who has just been told I have Stage 4 pancreatic cancer.

This diagnosis puts me in an interesting position. I’ve spent much of my professional life thinking about the science of climate change, which is best viewed through a multidecadal lens. At some level I was sure that, even at my present age of 60, I would live to see the most critical part of the problem, and its possible solutions, play out in my lifetime. Now that my personal horizon has been steeply foreshortened, I was forced to decide how to spend my remaining time. Was continuing to think about climate change worth the bother?

After handling the immediate business associated with the medical news — informing family, friends, work; tidying up some finances; putting out stacks of unread New York Times Book Reviews to recycle; and throwing a large “Limited Edition” holiday party, complete with butlers, I had some time to sit at my kitchen table and draw up the bucket list.

Very quickly, I found out that I had no desire to jostle with wealthy tourists on Mount Everest, or fight for some yardage on a beautiful and exclusive beach, or all those other things one toys with on a boring January afternoon. Instead, I concluded that all I really wanted to do was spend more time with the people I know and love, and get back to my office as quickly as possible.

I work for NASA, managing a large group of expert scientists doing research on the whole Earth system (I should mention that the views in this article are my own, not NASA’s). This involves studies of climate and weather using space-based observations and powerful computer models. These models describe how the planet works, and what can happen as we pump carbon dioxide into the atmosphere. The work is complex, exacting, highly relevant and fascinating.

Last year was the warmest year on record, by far. I think that future generations will look back on 2015 as an important but not decisive year in the struggle to align politics and policy with science. This is an incredibly hard thing to do. On the science side, there has been a steady accumulation of evidence over the last 15 years that climate change is real and that its trajectory could lead us to a very uncomfortable, if not dangerous, place. On the policy side, the just-concluded climate conference in Paris set a goal of holding the increase in the global average temperature to 2 degrees Celsius, or 3.6 degrees Fahrenheit, above preindustrial levels.

While many have mocked this accord as being toothless and unenforceable, it is noteworthy that the policy makers settled on a number that is based on the best science available and is within the predictive capability of our computer models.

It’s doubtful that we’ll hold the line at 2 degrees Celsius, but we need to give it our best shot. With scenarios that exceed that target, we are talking about enormous changes in global precipitation and temperature patterns, huge impacts on water and food security, and significant sea level rise. As the predicted temperature rises, model uncertainty grows, increasing the likelihood of unforeseen, disastrous events.
All this as the world’s population is expected to crest at around 9.5 billion by 2050 from the current seven billion. Pope Francis and a think tank of retired military officers have drawn roughly the same conclusion from computer model predictions: The worst impacts will be felt by the world’s poorest, who are already under immense stress and have meager resources to help them adapt to the changes. They will see themselves as innocent victims of the developed world’s excesses. Looking back, the causes of the 1789 French Revolution are not a mystery to historians; looking forward, the pressure cooker for increased radicalism, of all flavors, and conflict could get hotter along with the global temperature.

Last year may also be seen in hindsight as the year of the Death of Denial. Globally speaking, most policy makers now trust the scientific evidence and predictions, even as they grapple with ways to respond to the problem. And most Americans — 70 percent, according to a recent Monmouth University poll — believe that the climate is changing. So perhaps now we can move on to the really hard part of this whole business.

The initial heavy lifting will have to be done by policy makers. I feel for them. It’s hard to take a tough stand on an important but long-term issue in the face of so many near-term problems, amid worries that reducing emissions will weaken our global economic position and fears that other countries may cheat on their emissions targets.

Ultimately, though, it will be up to the engineers and industrialists of the world to save us. They must come up with the new technologies and the means of implementing them. The technical and organizational challenges of solving the problems of clean energy generation, storage and distribution are enormous, and they must be solved within a few decades with minimum disruption to the global economy. This will likely entail a major switch to nuclear, solar and other renewable power, with an electrification of our transport system to the maximum extent possible. These engineers and industrialists are fully up to the job, given the right incentives and investments. You have only to look at what they achieved during World War II: American technology and production catapulted over what would have taken decades to do under ordinary conditions and presented us with a world in 1945 that was completely different from the late 1930s.

What should the rest of us do? Two things come to mind. First, we should brace for change. It is inevitable. It will appear in changes to the climate and to the way we generate and use energy. Second, we should be prepared to absorb these with appropriate sang-froid. Some will be difficult to deal with, like rising seas, but many others could be positive. New technologies have a way of bettering our lives in ways we cannot anticipate. There is no convincing, demonstrated reason to believe that our evolving future will be worse than our present, assuming careful management of the challenges and risks. History is replete with examples of us humans getting out of tight spots. The winners tended to be realistic, pragmatic and flexible; the losers were often in denial of the threat.

As for me, I’ve no complaints. I’m very grateful for the experiences I’ve had on this planet. As an astronaut I spacewalked 220 miles above the Earth. Floating alongside the International Space Station, I watched hurricanes cartwheel across oceans, the Amazon snake its way to the sea through a brilliant green carpet of forest, and gigantic nighttime thunderstorms flash and flare for hundreds of miles along the Equator. From this God’s-eye-view, I saw how fragile and infinitely precious the Earth is. I’m hopeful for its future.

And so, I’m going to work tomorrow.

Wednesday, January 13, 2016

Obama's Moon Shot

From NBC News:

It just might be the right time for President Barack Obama's ambitious "moon shot" to cure cancer, according to experts.
Obama announced the initiative Tuesday night in his State of the Union address and put Vice President Joe Biden in charge.
"Last year, Vice President Biden said that with a new moonshot, America can cure cancer. Last month, he worked with this Congress to give scientists at the National Institutes of Health the strongest resources they've had in over a decade," Obama said. "Tonight, I'm announcing a new national effort to get it done."
 
It's good time to do it, says the American Cancer Society's Dr. Otis Brawley.
For starters, Biden has a proven track record of being able to get Congress to stand with him on this issue: He helped get Congress to add $264 million to the National Cancer Institute's budget in the 2016 spending bill, part of a $2 billion raise for the National Institutes of Health.
"He may actually be able to get Republican and Democratic support for this," Brawley said.
But even more important, the research is advancing more quickly than ever, says Dr. Jose Baselga, Physician-in-Chief and Chief Medical Officer at Memorial Sloan Kettering Cancer Center and president of the American Association for Cancer Research.
"The field has obtained such a critical mass of knowledge that now we are ready," Baselga told NBC News.
"This is the golden era of cancer research," agreed Dr. Ronald DePinho, president of the University of Texas MD Anderson Cancer Center.
Money wasn't enough to do it in 1971, when president Richard Nixon declared a war on cancer. Experts didn't even know then that cancer is entirely caused by genetic mutations, and that the place it starts tells a doctor very little about the tumor itself.
But money will help a great deal now, Baselga said.

"I do think in a great part it's a money issue," he said. "The amount of discoveries that are occurring are many. We see them at a speed that we have never seen before. I think money could go a long, long way."
It will take coordination, too, said Brawley. Biden notes this in his comments on the new initiative.
"Several cutting-edge areas of research and care — including cancer immunotherapy, genomics, and combination therapies — could be revolutionary," Biden, whose son, Beau, died of brain cancer last year, wrote.
"But the science, data, and research results are trapped in silos, preventing faster progress and greater reach to patients. It's not just about developing game-changing treatments — it's about delivering them to those who need them," Biden added.
"Right now, only 5 percent of cancer patients in the U.S. end up in a clinical trial. Most aren't given access to their own data. At the same time, community oncologists — who treat more than 75 percent of cancer patients — have more limited access to cutting-edge research and advances."
This is precisely what's needed, said Brawley.
"We have tremendous difficulty collecting patient data because of privacy laws or the perception that privacy laws are preventing them from doing so," Brawley said.
"That is something the vice president can fix in six months."
Baselga said cancer centers like his own have huge amounts of data that they can share with one another about what genetic changes are involved in cancer. Sharing this information with other centers and with the companies that actually end up making new treatments is critical, he said.
"Since every tumor is different, you need to have thousands and thousands of tumors to be able to get a good representation of what is going on." Right now, there is little incentive for anyone to do that.
And then there are the disparities. No breakthrough can save lives if people don't get access to it, Brawley noted.
"We need to figure out why we have had a 40 percent decline in breast cancer deaths over the last 25 years, but not in nine states," Brawley said. "We have got good data to show that 20 percent or more of women who get a breast cancer diagnosis right now do not get the fruits of the research that has already been done. They get less than optimal treatment."
One study found an equally horrifying pattern with ovarian cancer.
It found just 41 percent of eligible women are getting chemotherapy delivered directly to the affected area, even though the benefits are so strong that the National Cancer Institute made a rare recommendation for doctors to use it.
And it's better treatment, in the form of drugs such as tamoxifen that can not only treat but also prevent breast cancer, that is responsible for half the decrease in breast cancer deaths, Brawley said. Screening in the form of mammograms is probably a distant third factor, after the increased willingness of women to seek treatment in the first place.
Bringing down costs will be a huge part of this, also.
The average price of new cancer drugs was more than $100,000 a year in 2012. Cancer experts have started to rebel, but they also point out that the promise of profits can attract drug makers into a field where drug development relies on the private sector.
Cancer's still the No. 2 killer in the U.S. But the American Cancer Society just reported that 1.7 million people escaped death from cancer since 1991.
Here are just a few of the new approaches that have cancer experts thinking it's a good time to double down:

New immune therapies

Former president Jimmy Carter tried out the new cancer drug Keytruda, which helps the immune system take on brain tumors. He says the drug shrank the tumors; doctors note he got pretty good targeted radiation, also.

Targeted treatments

Targeted treatments such as Imbruvica, known generically as ibrutinib, help patients with a hard-to-treat form of leukemia live longer and healthier lives, and free them from unpleasant drug infusions at the same time.
Personalized immune therapies involve finding immune cells in patients' own bodies that recognize and attack the tumors, and growing more of them in the lab. They have remarkable results in a few lucky patients.

Lifestyle insights

Other advances include studies that show just how diet and obesity affect cancer risk. And, of course, the sharp decrease in the number of people who smoke has helped.

Information sharing

Not least, sharing information can save lives. One cancer registry linked a woman's rare childhood ovarian tumor with a genetic mutation that caused her baby boy's seemingly unrelated lung tumor years later, and pointed them to ways to treat it.
Another found that more than 8 percent of children with cancer have unsuspected genetic mutations that could run in their families.
No single approach is going to wipe out a disease that experts now know is in fact dozens, if not hundreds of different diseases.
"Nobody is going to cure cancer in a year," Brawley said. "I don't think anybody going to cure cancer in a decade. We can decrease a lot of pain and suffering due to cancer."