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."

David Bowie planned his end as he lived – on his own terms, blazing a trail

Below is article from The Guardian by Ann Neumann about how David Bowie and many others are now controlling their end of life decisions.


http://www.theguardian.com/commentisfree/2016/jan/12/david-bowie-death-end-of-life-plans-cancer?CMP=fb_us


“A complete surprise,” said Brian Eno. “Shocked,” said Peter Gabriel. After more than 40 years of friendship and, in the case of Eno, regular email exchanges, the news of David Bowie’s death Sunday appeared staggering and unexpected to his friends. The rest of us were surprised and shocked too. Bowie had managed to hide his terminal cancer from almost everyone, even flashing a joyous smile for the release of his new album.
Bowie may have been a profoundly unique musician, but his secrecy regarding his terminal condition is increasingly common. Death, particularly for those in Bowie’s generation, is becoming something to control – an event to arrange and manage. The effect can be heartbreaking for friends and fans who had no chance to say goodbye. But it’s also a way for the dying to avoid what they may consider the indignities of disease and the exhaustion of attention.
As the Baby Boomer generation continues to age and encounter infirmity and terminal disease, they will continue to demand greater control, refusing to follow doctors into painful treatments and life-extending measures. A good death to this demographic group does not come to the oldest, but to those who have lived well up to the very end.
The death of David Bowie was well choreographed, a produced roll-out of images and information. Blackstar, Bowie’s latest and last album, released on his 69th birthday, flew to the top of UK and US charts a few days before his death. Publicity photos, possibly taken then, show him standing, chic as ever, in a dark suit and jaunty hat, a metal roll-up door behind him, his head thrown back in an exuberant laugh. It was the laugh of vitality until, two days later, it was a laugh of defiance.
Baby boomers, those like Bowie between the ages of 51 and 70, who were born just after the second World War, have been a restless, relentless generation. Their protests in the 1960s and 70s were no more enthusiastic than their embrace of financial security in the 1980s. Boomers have reformed and reinforced every caprice of their age, so it’s no wonder that now, as they confront aging and the ends of their lives, they’re choosing quality of life over quantity. That means making time for bucket list adventures, foregoing those heroic “do everything” treatments and yes, planning every detail of their deaths.
In 2012, Hollywood gasped when the death of Nora Ephron, screenwriter of Silkwood, When Harry Met Sally and Sleepless in Seattle, was unexpectedly announced. Ephron had told no one. But she left clues in her final book, I Remember Nothing, that her days were numbered. Hiding terminal diagnoses is a way for patients to control their deaths.

“Boomers have never been a stoic bunch,” gerontologist Ken Dychtwald told Time magazine in 2013. “They’re not going to allow their last chapter in life to be an extended period of loss, fear, pain and suffering.”
Boomers’ efforts to change the way Americans die are already being felt. Not willing to linger for years in nursing homes, they’re pressing for the legalization of aid in dying, the legal right to receive a lethal dose of medication from their doctor when they have six months or less to live. The movement has garnered a groundswell of support in the past two decades, with four of the five states where it is legal passing their laws (or in the case of Montana, deciding their court cases) in the past six years. More than a dozen other states have grassroots initiatives underway, with six actively considering legislation.
Efforts to better plan end-of-life care decisions have garnered attention, too, in recent years, with a proliferation of resources for elders to organize their finances and their end-of-life decisions. Hospice use and home deaths are increasing. A number of bestselling books have recently brought planning options and elder care issues out into the open, including Atul Gawande’s Being Mortal and Katy Butler’s Knocking on Heaven’s Door, in which both chronicled the long and painful deaths of their fathers and addressed medicine’s vagaries.
Bowie had every right to protect the privacy of his final days, and if the reports are true that his terminal liver cancer began in his lungs (a common path for lung cancer), this was likely a second round. He long knew then what was coming; the five-year survival rate from liver cancer is about 16%. And it seems he wasted no time in orchestrating his final days. Like everything else Bowie made acceptable for his fans – fluid genders, flamboyant, outrageous clothes, dreams of equality and other worlds – this grand and surprising final exit may signal to the 76 million Baby Boomers now facing their own twilight that there’s no harm in going out your own way.



Monday, January 11, 2016

David's Bowie's Parting Gift

Interesting story and video from David Bowie. He timed the release to be shortly before he died from cancer.  I'm a Bowie fan and his early music was groundbreaking.  And of course, as a patient with an incurable cancer, I'm interested in how he approached his final days.  Give this a read and a watch.


http://www.telegraph.co.uk/news/celebritynews/12092542/Bowies-last-album-was-parting-gift-for-fans-in-carefully-planned-finale.html



Friday, January 8, 2016

More on Andy

A post from my buddy Bill, who is friends with Andy. Powerful stuff.
There's a cure coming

Round and round we go..until we don't

It's my off week from chemo. I'm in the middle of a cycle. Blood counts are good. No Procrit shot this week. I feel good. As I approach 5 years, I think I forget about the severity my disease. Well, maybe forget isn't the right word. Perhaps I ignore it.  I did have a couple of reminders this week about what myeloma really is. 

Pat posted this morning about a good friend of his who died this week from myeloma. His post is worth reading. Sara, his friend, was strong to the end. http://multiplemyelomablog.com/2016/01/rest-in-peace-dearest-sara.html

Also this week, Andy, who is someone I've never met, went into hospice this week. While I have never met Andy I feel like I know him and his wife and their journey and pain via facebook. Andy's wife has consistently posted about Andy's condition...both in good times and sad times.  Andy is young, has two young kids and has been fighting mightily. The myeloma just became too powerful.  It's really a heartbreaking story.

For some reason, early this week I decided to read some of my older posts from 2 or 3 years ago. Interesting but not interesting. My posts aren't much different than they are now. Chemo, working, trying to figure out the meaning of all this. It's frustrating and I get angry at myself. I shouldn't be writing the same things today as I was then. I mean, the good news is I'm alive and doing remarkably well. But it's also maddening in that I should doing more to embrace life, that every day I ought to be celebrating everything. But I'm not sure I am. As we start the new year, I'm going to work extra hard on this.

I have a few links to share as well:

First up is a short article from Cure Magazine by a woman about her challenge of living with a terminal disease.  http://www.curetoday.com/community/linnea-olson/2016/01/living-with-terminal-cancer

Next is a story from nbcnews about the financial hardships many people face as they deal with their cancer. http://www.nbcnews.com/health/cancer/debt-bankruptcy-are-rewards-cancer-survivors-n490896

Last an article about how to find a career with meaning.  http://idealistcareers.org/4-distinctions-explore-building-meaningful-career/

Tuesday, January 5, 2016

Thursday, December 31, 2015

The day after chemo

I was at work today. Super productive with the dex impacting me full force.  I was out in the field part of the day, checking on progress on a bridge construction project.  Being in the field kicks the ass of sitting in a cubicle. 







Wednesday, December 30, 2015

Day 1 Cycle 16

This photo is of the second to last step of my infusion today. It's the flush of the port at the end of day one of cycle 16 of my latest cycle of maintenance routine. A cycle is a month. Note that there has been countless other regimens over the past nearly five years. So total cycles for all treatments is an unknown number to me. I suppose I could calculate it, but there is no point.



I'm wide awake from the dex. I tried a different sleep aid tonight and it has had zero effect. My mind is spinning widely.

I'm thinking about my brother and sister in law, who have been faced with one family emergency after another. My sister in law's sister in the hospital, struggling against her lifelong diabetes....another horrible disease. My sister in law has lost both her parents over the past 18 months. Truly sad. But my sister in law carries on in a way that I'm not sure a lot of people could do.

My wife has been sick for a few days with some kind of flu. She's finally feeling better. Gracie, my pup, has an odd fear of coughing. So anytime my wife coughs, Gracie freaks out and leaves the room. Then she comes back. Then there is another cough and she leaves again. So all night I am hearing the click clack of Gracie's nails on our faded hardwood floors.

I'm sick of myeloma at this point. Not the myeloma itself. As I said before I'm at a comfort level with it. It's the physical and mental shit that accompanies myeloma that have me angry (an anger fueled by dex). I'm angry that I'm constantly thinking about my financial future. I'm good right now...as long as I am working. But what about later, when working becomes too much of a chore?  I'm most angry at myself, as I think about and regret and re-regret past decisions I've made that I can't get over right now.  I've decided that I'm a horrible decision maker. I need to adopt the George Constanza of Seinfeld approach, where I do the exact opposite of everything I'd normally do. It seemed to work for him.

I visited my mom for Christmas. We went to her neighbor's for Christmas. I really enjoyed it. A diverse and interesting group of people. It reminded me that I need/want to be more interesting. I've carried a fear my whole life of being an uninteresting older person and I think I may be on my way. I'm thinking about getting a new mountain bike and riding again. A friend goes to the nearby trails on weekends and I think I'd like to join him.

Over the next two weeks I have to see my dermatologist. I know that she'll burn a few pre-cancerous spots off my face. I'll also be seeing the ass surgeon soon. About two years ago I had the most miserable experience of my life at his hands. Because of my lowered immune system, I'm prone to warts and skin viruses in unmentionable places. I'll tell you this, there's probably nothing as humiliating as someone staring up your ass, taking notes.

Before I was diagnosed, I had basically zero exposure to cancer. My perception was very black and white. I thought you were either cured in a few months or you died. Boy was I wrong. Myeloma just keeps giving. Mind you, I know I'm fortunate. I'd doing really well. I'm working and living and planning on getting jacked...lean and mean... in 2016. But if I'm being honest, I'm a tinch envious of other cancer patients, who get sick then several months later are well. I don't say this much, but it's a bit unfair. And I feel like an asshole for even expressing these feelings.

I miss my friends. I miss being able to do whatever I want, going wherever I choose...without having to consider my treatment and doctor schedules.  I can't miss treatments. I never achieved complete response or remission. So delayed  treatment would mean the resting myeloma can go nuts. I'm going to meet my friend David Saturday to hang and watch some college bowl games. But in the back of my brain, I already know that after about 3 hours I'll need to get home for a nap. And that a couple of beers will mean I'm exhausted Saturday night.

On the positive front, the Vikings have qualified for the playoffs. I love this year's team. Super Bowl visions occupy about 15% of my awake time every day. The game is in the SF bay area this year. So if the Vikings make it, you know I'm going. Of course writing this has now jinxed the prospects. I'm up for a new job at work. It's something I'm pretty certain I should get. Again though, I shouldn't write or talk about it...lest I jinx the whole thing. I have a host of conspiracy theories about why I might not get it. I can get a decent level of paranoia going on certain things. This is one of those.

This time of year at Dr Phan's office is always busy. With holidays, people try to squeeze in their infusion treatments. The Dr has a fair amount of newer patients. Not all are doing so great....as far as I can tell, but you never know. Sometimes, like today, it kind of trips me out that there I am. Hooked up, getting chemo drugs infused through a port. I ate cheezits and watched a bowl game on my ipad. I used to sleep under a blanket, so I've definitely improved and made progress. But still it's an odd feeling if you really stop and think about what you're doing. I try not to.

Well, it's time I try to get a little sleep. Don't worry about me. I'll be fine. Just unloading my brain. I guess that's why I better find a new therapist...tout de suite, aka double time in French.



Thursday, December 24, 2015

Doctors Update

Saw Berenson yesterday. First visit in two months. I skipped November. Oooh, so bold. All is good. No changes in my numbers.  So Tuesday we start up cycle 16. 
Also saw the kidney doc. First visit in about 5 months. As with Dr B, no changes. I take losarton, a blood pressure medicine, to slow kidney damage progression.  Lately with my low blood count and low blood pressure, I've been getting a little light headed when I stand up too quickly. So Dr Froch gave me the option of cutting out losarton. I thought about it and nope...gonna keep taking it. Changing what works is not something I do. 

Now on my way to see my mom for a quick vist. Happy holidays, Merry Christmas and Happy new year everyone. Be well. And let's all seize 2016 with gusto and a vengence. As my friend Ken says, it's beast mode time in 2016.

Monday, December 21, 2015

Cycle15

I got back most of my monthly lab results today. These are the precursor to my Weds Berenson visit. So far everything looks good. Low on hemoglobin, so I got a Procrit shot this morning. This might explain my tiredness today.  Creatinine, though, is back down to 3.44. I've been focusing on the renal diet, given the number was creeping up. So I'm quite pleased with that result.


Total protein looks good. Now just waiting on the Upep, which is a measure of the paraprotein (bad protein) in the total protein. I'm anticipating this will fine.


No doubt next week will be the start of cycle 16.


Then we're in 2016.

Thursday, December 17, 2015

Artist Lydia Emily faces down death to spread her light

By now, folks should now that I struggle with finding my meaning. It's been my goal since I was diagnosed. Not only do I want to find my meaning, I want to embrace life and live life to the fullest. I'm particularly taken by people who are doing just that. It's inspiring for me. In 2016, we're going to figure this thing out. For now, I want to share the story of an artist who is doing what she loves as she deals with a likely fatal illness. Please give it a read.

http://www.latimes.com/entertainment/great-reads/la-et-cm-c1-lydia-emily-muralist-20151217-story.html

Hot Links

Just wanted to share a few things:


First is a Caregiving 101 article, that addresses the unique issues of being a myeloma caregiver:
http://mymultiplemyeloma.com/fight/caregiving-101/


Next is an article about adding certain spices to your diet, as a anti-cancer move:
http://anticancerclub.com/healthy-mind-and-body/adding-spice-to-your-life-as-an-anti-cancer-move-by-barbara-versaeval-cunnings/


Then we have a link to webinar that I listened to regarding Disability Benefits. It's very informative and worth about a half hour of your time.
https://disabilityrightslegalcenter.org/sites/www.disabilityrightslegalcenter.org/files/2015-12-16%2014.16%20Disability%20Benefits.mp4


Finally, it's a link to an organization that isn't necessarily cancer related, but for an organization that provides a vital service...connecting people with disabilities with a service dog. Canine Companions for Independence.
www.cci.org/



Tuesday, December 15, 2015

False Alarm on the Port

Yesterday I had an appointment at the hospital for a check and repair of my port. Dr Phan wasn't able to get blood return from it a week ago or so. In my mind, I'd go to the hospital, they'd hook some pressurized connection and blow out whatever was clogging it. Instead, they checked me in for same day surgery, as if they were replacing the port. Had to go through the whole surgery rigamarole. That threw me off. We arrived at 7 am. 4 hours later, they wheeled me into the surgery room, hooked up to my port. Lo and behold, perfect blood flow. The thing was working great. "User error" the doctor said. I'm at one with my port, so getting a new one did not sound like something I wanted. Definitely relieved.


Today, we'll use it for real. It's day 15 of cycle 15 of maintenance. 24 hour urine later this week. Berenson next week.


The Leukemia and Lymphoma Society has a program called First Connection. It allows newly diagnosed patients to talk to more experienced patients with the same blood cancer. I went through training to be a first connection volunteer about two months ago. Last night I had my first connection. I spoke with a woman who had recently been diagnosed with myeloma. She had all the same fears and questions that I had when I was diagnosed. I think she was relieved to talk with someone else with the cancer. And for me, it was a nice step towards my personal goal of being relevant and giving back. Win win. On a side note, the LLS provides support for all blood cancers, including myeloma. But they don't have the M in their name. Some say this should change. I'd agree.



Sunday, December 13, 2015

The Beat Goes On

I was in Orlando this past week, just for two days. Kind of a long way to go for one night.  I went for a meeting of a myeloma group that I am a member of. I'm not sure I contribute much, but I definitely learn a lot. I also get to spend time with other patients and caregivers, which doesn't happen a lot. For me the benefits are worth traveling cross country. Two notes: One fellow patient, Yelak, is a 20 year survivor of myeloma. He's about my age, so he obviously was diagnosed at a young age. It definitely seems like myeloma isn't just a cancer for older folks. Anyhow, what was interesting is that even after 20 years of living with the disease, Yelak still talks about having the bubble of unknown hanging over him. He does velcade every week. And he knows that any day, the myeloma could renew it's strength or he could get an infection. Geez, I feel like I'm tired of thinking about myeloma after nearly 5 years. 20 years. But it's nice to know that people are living longer and longer with the cancer. Also of note is the awesome strength of Pat Killingsworth. He's recovering from transplant number 2 in the past few months. Dual transplants is one of several lines of treatment available to patients. Pat hung in there for our meeting, after being in Orlando leading up to this for the American Society of Hematology annul meeting. Pat left Orlando and headed to Iowa to see his transplant doctor. In Iowa Pat had a fever and some gut issues. He's now hospitalized until he can knock out the stomach infection. But how strong must Pat be to have endured a conference, our meetings and a couple of flights. He must have felt horrible but he persevered. He takes his role as advocate quite seriously.

This week I have chemo. Wrapping up the latest cycle of maintenance. Before I can do chemo on Tuesday, I have to have my port checked on Monday. It's clogged. Hopefully, it can get unclogged without much effort. If it can't be cleared, then I might have to get a new port. Fingers crossed I don't. I like my port, I don't want to go through the process of getting a new one.

Lastly I wanted to share the following op-ed from the LA Times. It's written by a woman who was diagnosed with a terminal cancer. I realized that I might be posting a lot of stories related to death lately. Don't worry, I think it's just something that myeloma patients need to get a little comfortable with. Doesn't mean we aren't going to fight. But it does mean, we/I am realistic.

http://www.latimes.com/opinion/op-ed/la-oe-welsh-time-i-have-left-20151213-story.html

Tuesday, December 8, 2015

Power port

I'm on my second port. I've had the current one for quite a while. It's under the skin on my upper chest.  It's great for infusion. Easy.  We can't use my left arm for blood draws or infusion and my right arms veins no longer work. So the port is also used for my bi-weekly blood draws.  Usually a nurse draws my blood and I walk it over to the lab. No nurse was available the other day so Dr Phan was going to do the draw. Takes just a minute. But we couldn't get a blood return. Phan moved the needle around but no luck. The damn thing is clogged. Why? Who knows. It might not have been flushed properly after my last infusion. Possible given the turnover and work load of nurses. But I watch every step and it seemed like it was flushed. Anyhow Monday I have to go to radiology for them to try and unclog it. If it can't be unclogged, then I get a new one. It better clear, I love my port. The lesson here?  Myeloma is always full of suprises. This is a new one for me.


Saturday, December 5, 2015

The Beauty of Certainty

I came across this short documentary about a man finding certainty about his life in the face of his death.
Brian Hendricks just learned that he has terminal cancer. Brian is a teacher and writer filled with the joy of life. He has the tools to put everything into a universal context – even his own death. But will these tools fail him as he wrestles with his mortality and what it means for his life, his family, and his legacy?
What do we know for sure? About ourselves, our purpose, and the people we love? Are we realistic about ourselves and our fate when faced with mortality? Does life become clearer or cloudier when we are dying? Our weaknesses, our failings, our anger, our hurt – what happens to them in the end? Watch one man’s struggle to answer these questions and find beauty in the certainty of his own death.

The Beauty of Certainty

Wednesday, December 2, 2015

55!!

Today is 55 months since my myeloma diagnosis. Yesterday was day 1 of cycle 15. Revlimid, velcade and dex. Today I'm operating on 4 hours sleep and fired up.


55 is also Anthony Barr a linebacker for the Minnesota Vikings. He went to UCLA. Go Bruins! In case you haven't been keeping track, the Vikings are looking awesome this year and there is talk of them being a Super Bowl contender. And that's not just me talking, although I am a bit focused on this possibility.


Check out this play by #55 in last week's Vikings game....







Tuesday, December 1, 2015

Full House

With the holidays, people have to adjust their chemo schedules. Full house today to accommodate folks who missed Thursday/Friday. 

Sunday, November 29, 2015

Everything is coming up 5s

The thing about myeloma is that it is so different for everybody. Different in how it manifests itself. Different in how it reacts to drugs. Just plain old different. I've been fairly lucky. Year one was tough. but since then I've been doing pretty good. Sure there are struggles and concerns, but I'm cruising along in many respects.

Last week I only worked two days, then I had a much anticipated 5 day Thanksgiving weekend. Leslie and I were excited to head out to Palm Springs to spend the holiday with our good friends Matt and Rich, who recently got a vacation home in the desert.

On Tuesday the day before we were to leave, I had a dermatologist visit. I've constantly got a host of skin crap going on thanks to a lowered immune system and the non-stop taking of drugs and steroids. The dermo visit was ok. Also Tuesday, I felt like something was in my left eye all freaking day. When I checked my eye Weds morning, I saw a lot of redness and a sty. I had one about a year ago. The first time, the opthamologist prescribed steroid drops that took care it. This time Leslie called the doctor to ask if I can get a new prescription for the same drops. He said no, that he couldn't prescribe steroids, without seeing me. Are you fucking kidding me? I take a ton of steroids every week, plus a shitload of other drugs. Leslie tried explaining that to the doctor and told him we were leaving town. Instead he prescribed a useless antibiotic drop that has done nothing for my eye. The white head part of the sty is gone, but redness remains, so tomorrow after work it's off to the eye doctor.

This coming Tuesday I start cycle 15 of my latest go round with maintenance chemo; revlimid, dex and velcade. Note that for some folks, this is their regimen. On Weds December 2, it will be 55 months since my diagnosis. It will be 5 months until my 5th year diagnosis anniversary. Also in 2016, I am turning 55. Lastly, the star of today's Vikings game was number 55, Anthony Barr. That's a bunch of 5s right there.

 I skipped Berenson this month. I saw my numbers and they look fine. I'll see him next month.

And that's the report.

Tuesday, November 24, 2015

Myeloma and Fitness

When I was diagnosed, I was fit but a little chunky. I thought for sure with chemo and cancer that I'd lose weight. I figured I'd get lean and mean. Instead I got fat. Steroids made me hungry and I'd eat. Chemo made me tired and lazy, so I wasn't working out. Over the past few months, I've gotten super (well semi) serious about diet and exercise. I'd down to 190 pounds. I was 205 when diagnosed and ballooned up to 215 a couple of years ago. I'm 54 years old, so my metabolism has changed. I used to crank out the cardio to stay fit. Now I do minimal cardio and instead do weights 3 days a week. And while I haven't had myeloma related bone problems, I am ultra concerned about my bones, so doing weight bearing exercise is important.


But I think I've kind of plateaued. I want to get down to 180, so I'm truly lean and mean.  It's funny in a way, that I worry about my weight given I'm fighting myeloma. But it's actually more important than ever that I stay in shape. It's part of my routine for staying two steps ahead of myeloma.


I've cut beef and pork out of my diet and eat minimal carbs. I'd love to cut chicken out of my diet. But I need protein. Since my kidneys are jacked up, I can't really eat nuts, beans, soy...other potential sources of protein. And I eat fish.


My point of this post? Umm, not sure. Other than I need some fitness advise so I can hit my goals. I also need protein advise, so I can minimize the chicken. My not eating meat is health related and also because it's getting harder and harder for me to eat animals. I've become a quite concerned with animals and their fate and lot in life.

Saturday, November 21, 2015

Big week on the myeloma treatment front

Two new myeloma drugs were approved this week. That's huge!  Below is Pat Killingsworth's take. If you don't read Pat's blog, multiplemyelomablog.com, you should. He shares his journey as well as important information on myeloma treatment.

The FDA approved Takeda’s oral proteasome inhibitor, ixazumib, late this morning. First daratumumab on on Monday and now ixazomib today. Velcade and Revlimid were FDA approved in the same year, but I don’t believe in the same week or even month. This is an historic breakthrough for myeloma patients everywhere in the United States. Access to two new drugs from two different pathways that show significant anti-myeloma effect.
I know a lot about ixazomib. We were considering using it as my next therapy if I didn’t transplant. We would have needed to apply for And as I’ve shared in the past, four members of my former support group on the Gulf Coast have had great, long lasting luck participating in several different clinical trials.
Still having trouble getting used to trade names. It may take me a while to start using the trade names, Ninlaro and Darzalex. I’ve hear worse. I should practice. This can get confusing!
Like Monday, I’ll do my homework and pass along important details Saturday. Personally, I think Ninlaro could have a bigger effect on the myeloma community than daratumumab (Darzalex). Only issue: it’s oral. I’m calling a patient tonight that can’t afford their Revlimid.
One more thought. Unlike Darzalex, Ninlaro is approved for patients that have tried one former therapy, not three. That means even easier access. This should make suzierose happy(ier). Her comment (rant) yesterday about the importance of patient access–and how Darzalex should be available to all myeloma patients was spot on.
More tomorrow. Feel good and keep smiling! Pat

Friday, November 20, 2015

Dex, dex, dex and so on.

Chemo Tuesday. Then here is how it goes. Insomnia Tuesday night. Wired all day Weds, super productive at work. Tired but awake Weds night. Thursday tired as fuck, go to bed at 6:30. Friday wake up in horrible mood, roid rage at it's peak. Tomorrow (Saturday) all better. Broken record. Every two weeks.


I'm running out of things to say. If anyone wants to write a little something about their myeloma/cancer journey, let me know and I'll share it here. A little venting, a little joking, and so on can be quite cathartic.

Tuesday, November 17, 2015

Cycle 14 done

Wrapped up another cycle today. Later this week, it's 24 hour urine and 5 tubes of blood. Then we see results. Then we repeat. We're talking myeloma, so this is a perfectly acceptable routine.

Wednesday, November 11, 2015

Cluster f#*k, the day's only half over

I work full time.  I have been back to full time for probably two years now. I take pride in my job and I take  much pride in how I've managed to kick ass at work, while managing my myeloma. Tiger blood. Meow.


I get to work at 7 AM. It was 46 degrees here in LA this morning. I couldn't even get Gracie to go for a walk. I work for the Port of Long Beach, in the administrative offices. I'm a planner. We're in an interim admin building, waiting for a new building. For some reason, the powers that be decided that our interim building should be 10 miles away from the actual port. Silly really. The only good thing is that the interim building is about 5 minutes from my house. The commute is awesome.


This morning I had a meeting at the port at 8. Which meant I showed up to my office at 7, sent some emails, got prepared for the meeting and left the building at 7:30 to get to the meeting on time. A big part of my job is managing the relocation of oil wells and pipelines to get them out of the way of a new bridge being built. The oil relocation work has been going on for about 3 years and has cost over $200 million. Recently the bridge contractor has been damaging oil wells, which can have serious safety ramifications.  So the meeting today was for me to bring together all the parties to figure out how to prevent the incidents from happening and how to appease the regulatory agencies that oversee the wells. This part of my job I love and it keeps me fired up. Note there are parts of my job that I loathe and wish I could hand off to someone else. The meeting lasted a couple of hours. It was useful and productive.


I then drove the 30 minutes back to the office. Then I had to get back into my car and drive over to Dr Phan's office for my blood draw. Recall, we can't use my left arm for draws or even blood pressure given I have the no longer working fistula, which is there in case I ever needed dialysis. The veins in my right arm don't work any more. They've been beat up too much. The lab can't access my port. So I go to the doctor, the nurse draws my blood, I carry my blood to lab and that's the process. I should have done the blood draw last Friday. But I just didn't feel like it. Giving blood every two weeks can be annoying. So I went in today. But the nurse who does my draw isn't in this week. I had to walk a new nurse through the process. It's fairly simple. But they didn't have vials at the office. So I had to go to the lab, pick up the vials, then go back to Phan's, then carry the blood back to the lab. Phan's office was super busy, so it took a little while to get my blood drawn. And then at the lab, even though I was just dropping off, I had to sit and wait my turn. Annoying. It also hit me that I am a bit entitled. Not because I am a white male, but more because I have cancer. Fuck waiting, fuck systems. I expect things to work the way I want them. And gosh darn it, I deserve it. I have cancer. I have to remind myself that everyone has their own story and to remain patient.  Be a patient patient I tell myself.


Now I'm back at the office. I have a couple of meetings and some emails to send before calling it a day. I'm taking the rest of the week off. Why? Because I want to. I want to be able to go for a bike ride, have a beer, take a nap. Matt time essentially. Some might ask, why not take a day off when I've got the post chemo fatigue. I thought about that. But I'd rather feel good on my ditch day. I've figured out how to muddle through a day when I'm tired. If I took a tired day off, I'd just lie around and watch tv and sleep. Why waste a nice day off on that.

Friday, November 6, 2015

Shit, I Was Supposed To Have Learned Something From Having Cancer, Wasn’t I?

From the funny, satirical and right on The Onion....


Cancer lessons

Medical Cannabis

More and more research is showing medical cannabis has tremendous value for cancer patients as well as other ailments. It's a tricky subject though. There's still a bit of a stigma about it. I work, so I feel like I have to be careful about what I say or promote...even if it is for health reasons. The link below is an interview with an ex NFL player, Kyle Turley, who has started an organization called Gridiron Cannabis to help players deal with the lingering effects of constant head trauma. Here's a link to an interview with Turley. He's not messing around. Check it out.


Kyle Turley interview on medical cannibas

Thursday, November 5, 2015

Jacksonville man is learning to live, after accepting he was dying

Nice story about a man young who is living life, following his cancer diagnosis.


http://m.jacksonville.com/news/metro/2015-10-31/story/jacksonville-man-learning-live-after-accepting-he-was-dying?linkId=18494423#article=679875DBF64242B8B822B3B65700E2A45973


After years of coming to terms with dying, Todd Blake, at age 24, has another challenge ahead: Figuring out how now to live.
Figuring out how to spend the next years - possibly decades - healthy and cancer-free.
A year ago, he was dying. He knew there was no cure for the cancer he’d been fighting since just after he moved into his freshman dorm room at the University of Florida.
“I know that it’s inevitable, and I’ve accepted that,” he said in a August 2014 Times-Union article.
So, as the story said, instead of giving in to despair, Blake was doggedly living his life - in fast-forward mode.
He married the girl he met in ninth-grade English at Nease High. He started a foundation to help young adults with cancer. He got a job. He and his wife, Maja, even adopted a puppy, Louie, a friendly rescue dog of uncertain breed. He graduated from UF, after taking online courses, with a 4.0 GPA. He went on national TV to tell his story on “The Today Show.”
All while undergoing hundreds of hours of rigorous cancer treatments, months in hospitals and two bone marrow transplants. Just trying to buy time to live that fast-forward life.
But after he took a new drug to treat his Stage IV Hodgkin’s lymphoma, a scan in May showed absolutely no evidence of cancer in Blake’s body.
A follow-up three months later confirmed that. He was still clear.
He was elated. And he was dazed.
“Trying to adjust to survivorship - I get that now,” Blake said. “It’s so incredibly difficult to just flip a switch and unaccept your imminent death.”
That was his reality, and he’d adjusted to it.
“Getting healthy was my full-time job. I‘m glad that I succeeded in it, but adjusting to life as just another person - it is a little disheartening sometimes. It’s just not as passionate. During [treatment] you’re questioning all these intensely deep, meaningful things about your life. And then now, you know, I’m stuck in traffic.”
Mind you, he’s not complaining. He’s just trying to learn to live with this wonderful new reality.
In the Blakes’ apartment in Ponte Vedra Beach, they laugh as they try to speak over the noise of rambunctious Louie gnawing a big plastic bottle, which he occasionally shakes in his jaws. The young couple now speaks tentatively of starting a family, of buying a house, building a future together.
They can dare to dream now.
“For so long,” Todd Blake said, “I’ve been the guy dying of cancer.”
LOOKING TO THE FUTURE
As he was dying, Todd heard of a new drug from Merck, Keytruda, that was working wonders on Hodgkin’s patients. But he could not get approved for it, he said, because after his most recent transplant it was feared the drug could kill him.
But he was dying anyway, right?
“It was my last chance,” he said.
“None of us knew what was going to happen. There’s no data of any patient in the nation that had been on this drug with my situation. No one had done that.”
It was a risk he was willing to take.
He praises his doctors, at Mayo Clinic and in New York, for pushing for him, for cutting through bureaucracy and procedures to get him the treatment. He’s been on the drug since March, provided free to him by Merck.
“He’ll be on it forever,” Maja Blake said.
Early results have been promising, but the drug has not been around long enough, the couple said, for doctors to make a confident long-term prognosis.
So now the Blakes look hopefully to the future, but with one eye out for a bad scan.
If that happens?
“There’s not going to be another miracle,” Todd Blake said. “It’s like, I’ve exhausted all the options. I know I’m in a good streak right now. I want to enjoy it. You don’t want to get caught up in the routines of life and throw away that excitement - you want to live purposefully. But the hardest about living purposefully is to do it day after day after day.”
MOUNTAINS TO CLIMB
After he learned he was no longer dying, Blake quit his part-time job (his employers were understanding) and just savored life.
“Three months of unemployment,” he said. “I surfed, I made lattes. We went on a trip to Norway. We climbed mountains.”
That included a grueling 12-hour hike in melting snow to the Troll’s Tongue, a famous rock ledge that juts out high above a lake in Norway, Maja Blake’s native country. He only had half his lung capacity because of radiation treatments, but the climb was something he had to do, he said, to celebrate being alive.
Though he is in remission, their lives still center on cancer.
“But not in a bad way,” Maja Blake said.
In 2012, he started Live For Today, a foundation to support young adults who are or have been cancer patients. It’s growing, and he wants to see it grow even more.
Maja is a Florida State University grad who works at the Mayo Clinic, where she’s a clinical trials coordinator. Todd just began work as a business development specialist at the new Baptist MD Anderson Cancer Center in Jacksonville.
He feels pressure, he said, to get back the six years that were taken up by cancer. He’d like to go to medical school eventually; he’d been on a premed track at UF when he was diagnosed.
Still, there’s more to life than that.
“And if kids and family are back on the table, that’s the most important thing. That was the thing that I would always throw out in the long-shot prayer: ‘God, if you could cure me, that would be amazing. But being able to get to raise a family … ’ ”
He paused. “I just wanted to have that experience. That’s huge.”

Wednesday, November 4, 2015

Myeloma Cycle 14 Day 1

Yesterday was day 1 of cycle 14 of the current maintenance regimin. Super busy at Dr Phan's office. Lots of new patients. The excitement was a fire drill for the whole building that started while I was waiting in Phan's lobby. Loudest fricking alarm I've ever heard. Must people went outside, even a couple of patients who had already started infusion. A couple of folks stayed inside. Not me. That alarm almost gave me a heart attack. We have these tests every few months at my work.Tries to prepare folks in case there ever was an actual fire. My opinion is that if there is a fire, people's natural inclinations are taking over and it'll be pure chaos.

Once the drill was over, we all went back inside. I talked to Phan. My eyes are super puffy and it looks like I have two black eyes. He attributes it to stress and poor sleep. He might be correct. My sleep is horrible...between having to get up to pee 3 times a night and having way too much going on in my head. Again...chalk it up to the mental challenge of myeloma. We try for normalcy and stress free living, but we also feel like there is a ticking clock in our head. It's a broken record for me. Constantly thinking about what is important for me to live life the right way. But also have to take care of the basics. Work, mortgages, exercise, eating, relationships.  I continue to think about Suleika Jaouads's 100 day road trip with her rescue pup. Sounds awesome!!

May 2 is just a few months away. It will be my 5 year anniversary since my diagnosis. I need to start planning what challenge I'll undertake to commemorate the event. Of course, I'll use it raise funds. A myeloma patient,Stan Wagner, is climbing Mt Kilimanjaro in January to raise funds for the MMRF. Very cool. I'd also like to put something in place that will last for years and years. Some kind of non profit. For what I'm not sure. Suggestions accepted.

That's all I got. Snuggling with Gracie right now. Soon we'll walk. Then I go to work.