Pages

Friday, September 16, 2022

Breaking...Bad

After I was diagnosed in 2011 with multiple myeloma, I was in and out of the hospital with fevers and/or severe anemia. I fucking HATED the hospital. I will say that, fortunately, the oncology floor at Long Beach Memorial provided private rooms for their cancer patients. I'm sure it had to do with our lowered immune systems. But it made it slightly tolerable. They had crappy tv's in the rooms on which I would watch ESPN nonstop, checking to see if the NFL lockout had ended. I remember very specifically being disappointed that I might not live to see the Vikings win a Super Bowl. By the way, I'm still alive and still waiting for that Super Bowl win.

Also when diagnosed, I started binge watching Breaking Bad. My favorite show ever. Better Call Saul, Lost and the Mary Tyler Moore show are on the top ten list. Now that Saul is over and with some subtle prompting from my brother, I am rewatching Breaking Bad. I'm on season one and, wow, I am reminded of how great it is and how it really resonates with me. For me, it was the perfect show at the time. 

Without spoiling anything for those who haven't watched it but are planning to, here's a brief synopsis. Walter White is a high school chemistry teacher. He is diagnosed with lung cancer and turns to making meth as a way to make money for his treatment and his family. His reactions to his cancer, regrets about his life and how his loved ones reacted to his cancer are all there in season one.

While I was bingeing the show, there is a scene in one episode where Mr. White is telling his class about Thalidomide. It was used to help pregnant women control nausea in the 50s and 60s, but was shown to cause severe birth detects and was stopped being used. However, some years later, it became a successful chemotherapy drug for certain cancers, including myeloma. I'm pretty sure I watched this episode at the exact time we were trying Thalidomide to try and reign in my myeloma, which at the time was out of control. It was a scary drug that you couldn't touch with your bare hands, even though you were swallowing it. It didn't work for me. The first drug that had any traction for me was Bendamustine (aka Treanda).

Most impactful for me was Walt discussing how he wanted to make choices for himself and live his life his own way. This is what I am working on. Well, I've been working on it most of my adult life. I'm not going to start making meth, But of late, it feels like a ticking clock is telling me to hurry up. Pre-cancer, I had visions of being a Nevada real estate mini-magnate, with my home in Green Valley or Summerlin. I felt like perhaps I was on my way. I've written before about my love of Las Vegas. I had a couple of unsuccessful job interviews there back in the day. (And as a reminder, 3 important things to me are the Minnesota Vikings, Las Vegas and animals) Myeloma and life interfered with my progress of being a mini-mogul.  

I finally found a cancer focused therapist. She's ok I guess. But a little too much of the toxic positivity. Things aren't always so simple as just doing it.

Leslie and I have a bit of a lizard habitat in our back yard. We've been seeing a number of babies roaming around. They're pretty darn cute. The other day I was sitting out back and out of the corner of my eye I saw something move. I turned and saw a very small and very thin baby lizard. It was moving it's head around but stood very still. I tried to give it some water and some bugs and it didn't budge, so I left it alone. We checked on it about an hour later and it was dead. Still in the same spot. I'm pretty sure our lizards are Western Fence Lizards and I remember reading that up to 50% of hatchlings don't survive. I shouldn't have been surprised that it didn't make it. But seeing the dead baby lizard really was heartbreaking. Really.  I felt so bad for the little creature. And, don't judge, I did give it a simple burial, next to a ceramic lizard that Leslie bought at a farmers market a couple of years ago. Ugh, cancer has made me so emo. 


One more note on animals...There is a place called Oscar's Place . They rescue donkeys that were destined for the slaughter house. The guy who started this non-profit has an inspiring back story. It's worth checking out. If I had the energy and health I'd like to volunteer for them. They're located in Northern California, off the beaten track and a good distance away from the medical infrastructure I need. 

And finally, in case you're wondering, my nephew made my annual Vikings winning the Super Bowl bet. 40-1. I think this is the year. Scratch that. I know this is the year. Week one, they destroyed the hated Packers. And let's not forget how in 2009, all onetime packer Brett Favre had to do was fall down and the Vikings would have been in the Super Bowl. Argh!! Speaking of criminals, has any one been keeping up with the news on how the same Favre personally profited by participating in a scam to take welfare money? 


And that's my update. Myeloma-wise I'm good. Knock on wood, Darzalex and Pom are still doing the trick. Coming up on 6 years on this regimen. Yahoooo!

Vote yes on 27!!


Tuesday, September 13, 2022

LLS Light the Night

 The Leukemia and Lymphoma Society is an invaluable organization for blood cancer patients. This year I have joined a Light the Night team which is honoring Tom Swick, an LLS volunteer and myeloma patient who passed in 2020. Tom was someone I could turn to for advice, support and friendship. The event will be held on November 17, 2022. If you'd like to donate, please follow the below link:

Matt's Light the Night Fundraising Page

Friday, July 29, 2022

I Guess That's Why They Call It The Bruise

 My left arm is a joke. Not the kind of joke that makes me laugh. But a joke in that every time I look at it, I shake my head in disgust. It still works as an arm does. But I'll describe it's current condition in a moment.

 It became nearly unusable for medical stuff like blood draws and blood pressure, a ways back. When I diagnosed and we were struggling to find a treatment that worked and my creatinin was over 8, we'd check in with my nephrologist almost as often as my cancer doctors. Doc Zoller (no longer my kidney dr) refused to take out an external catheter in my neck unless I got a fistula in my wrist. She wanted it there in case I needed dialysis. My numbers indicated my kidneys were failing. But I had none of the symptoms of kidney failure. I wanted the catheter out and didn't know it at the time, but the doctor was basically resorting to Medical Blackmail. I was still working and had to tuck the catheter under my shirt collar. to avoid looks and questions. For months I could only take baths, a shower would potentially get into it, leading to a possible infection. At the time, I didn't know that I could advocate for myself and push back against doctor's advise. She wasn't giving advice though.  In fact she even scheduled me for a 4 AM dialysis without consulting me. Leslie and I talked and ruled out dialysis. For me it was more a mental thing. I knew I couldn't handle an additional medical procedure at the time. Anyhow, the fistula went in. Never been used. And now 11 years later, if for some reason I had to do dialysis, it doesn't even work. I'd have to get a new one. And I can't even do party tricks anymore by shocking people with the powerful pulse. All I have is a scar and a small raised area in my wrist. Furthermore, I do have a fuzzy line in the sand, where I have told myself I'll never do dialysis, even if my kidneys do fail. It's a bridge too far for me.

That's not why my left arm is a joke though. It's a joke because it looks like shit. First problem is that I'm sporting a huge bruise on it. Leslie and I had a yard sale and garage cleaning extravaganza last weekend. It was a success and we got rid of a lot of stuff. Because of all the steroids (Dexamethasone) I've taken since 2011 and a daily baby aspirin, my skin is super thin. I bleed and bruise on a regular basis. A slight bump or scratch will leave an ugly mark and bleeding. After the garage cleanup, I noticed a bruise on my left arm. I have no idea how it got there and it seemed to be expanding in front of my eyes. I should have set up a time lapse camera to watch it grow. When I woke up Monday, it looked like this:


It's Friday now, and the bruise is slowly shrinking. But it's still there and I'm still wearing long sleeve t-shirts, again to avoid questions and looks. Meanwhile I noticed a new small growth on my left forearm. I've spent more than enough time at the dermatologist and have had my share of skin cancers removed (again, due to Dex). I have an appointment with my dermo doc in a week and I know it will need to be biopsied and I am almost certain it's a squamous cell carcinoma. My dermo dr is the best and she always feels horrible when she has to cut into me. A side note, her husband is now my back doctor and sent me  to physical therapy. He's ruled out surgery given my bone density needs to be tested and I have Dex cause osteopenia. Surgery would like make things worse. (Notice a pattern with Dex? It's evil) The new growth looks like this:

The good news is NFL training camps opened. I'm predicting Vikings vs Bills in the Super Bowl. Mark it down. I'll likely do a super quick stop at a casino at the Nevada stateline to place my annual bet on the Vikings to win the Super Bowl. 40-1 longshots. Reminder, 26 years of making this bet. It's never paid off. And don't get me started on how frustrating it is that I can't make a visit to Vegas due to covid and my crap immune system. 

After searching high and low, I finally found a therapist who meets my need. I've had 11 years of being mentally strong and kicking ass but I've recently hit an emotional wall. I was turned on to a place called: Fran's Place/Center for Cancer Counseling. It's awesome. Check em out if you're in California and need support. I've added a link on their name. 

I've started PT and my back is improving. No long walks though. That's sad and might be adding to my depression, anxiety and stress. I'm not a real pleasure to be around. 

But I'm back to losing weight. I am just under 190. I should be 170-175. I have 60-89 year old man muscles now. Meaning, they are flabby and shrinking. I gotta lean up. Minimizing carbs. Minimizing beer. Minimizing calories. I'm focused. Lean and mean coming up. 

What else? Days fly by. Typically I have one or two medical appointments every week. I take a lot of naps. Typically I wake up more tired after my naps. My current nephrologist, Dr Froch at Cedars Sinai, ordered a home sleep study for me. We'll review the results in a few weeks. Doc Froch also ordered Evusheld for me, to get me some protection against covid, given four doses of the vaccine gave me no immunity. My immune system is a nonexistent. Like so many people, I'm sick of covid, but we're still masking up and being careful. Dr Froch is awesome. Here's a short video of how the home sleep test works:



I'm almost ready for a pet. I don't know if it'll a dog though. I still grieve and feel guilty about Gracie. Leslie isn't pet ready yet and I get it. So maybe start small, like a bunny. Or start big and get a horse. We had a morning dove build a nest in a hanging pot outside our kitchen window recently, It was there for 4 days and I felt real ownership and pride. Sadly it flew away and left no eggs. I do worry that a crow got the eggs, when the parent doves were on a shift change. Crows are darn smart, you know. 

And this is all I got. Cruise control myeloma-wise. I switched to FasPro. It's Darzalex given via a 3-5 minute sub q injection instead of a 4 hour infusion. I had my every 4 week injection today. We've also lowered my Dex, to try and minimize the crash. Also in my mix is 1 mg Pomalyst, every day for 21 days, followed by a 7 day break. I also get monthly Xgeva shots to try and strengthen my bones, without damaging my kidneys. 

Hope you all are well. 

Hold on, hold on! We may be getting a new law that  allows Medicare to negotiate drugs prices and caps a patient's out of pocket Medicare costs at $2,000. This would be huge if it happens. Contact your congressional rep and let them know how important it is. My monthly co-pay on Pomalyst exceeds $1,000. This is with a good Medicare Part D Prescription Plan. Absurd. And don't let anyone tell you that Pharma can't research or provide new drugs if this becomes law. That is horseshit. Below are two links: An article on the proposed bill and a way to find your representative. Peace, love, health and happiness.  


Lastly (for real), a few years back I started getting rid of stuff, ala The Gentle Art of Swedish Death Cleaning.  I realized during our yard sale, that I might have prematurely gotten rid of some things that I should have kept. It's mainly Vikings memorabilia, so it's all probably replaceable. It made sense at the time when I was certain that living ten years with myeloma was an impossibility. But now I want things for my future man cave which is on my theoretical vision board. Also on the vision board is owning a purple car. As a kid I wanted a purple Plymouth Barracuda. 


Wednesday, June 29, 2022

Alive and Kicking

Over the years, I've followed a number of blogs by fellow myeloma patients who I can relate to or who have interesting or informational stories to share. Writing is a good way to vent, share, cry or laugh...in a relatively safe place. Also over the years, I've become friends with a number of patients. It's that common thread. But, the sad truth is that myeloma patients still die. It's still incurable. 

I'm still stable and cruising along. Umpteen gajillion years since my diagnosis and half as long on Darzalex and Pomalyst. 

So what happens is, if someone doesn't post or share for a while, we get worried. I have a good friend who I met at Dr Phan's. We'll comment to each other if we're wondering about someone. If we see that someone has finally posted after a while, we'll let each other know. Such a strange phenomena isn't it?

All of the above is to let folks know I'm alive and kicking. My myeloma is in a good place. Why does this regimen work so long for me when it doesn't for others? Hell if I know. Luck of the draw? Some grand design? Nobody knows. We do know that myeloma is such a different disease for everyone. There is no one standard treatment that works for everyone. 

While my disease is stable. A gajillion years of treatment and steroids is playing roughshod on my body. My skin is that of a 100 year old person. Bleeding and bruising non stop. We're gonna do a bone density test soon, to see how I'm doing with osteoporosis. A bad back has pushed me to need to know my bone conditions. How we treat the back depends on my bones.  Steroids have played havoc on my bones, in addition to my emotional state. I've begged to drop steroids completely. I haven't gotten the ok, but we have lowered them.

Lastly, I'm finally changing to FasPro, an injected version of Darzalex.  For years I didn't mind the 5-6 hours, once a month, in the infusion chair for my treatment. It actually was a bit of a relaxing, reprieve from the real world. I no longer can sit still for any long period of time. I get uncomfortable and super antsy. This I chalk up to chemobrain and the impact of so many years of treatment on my body's functions. Not scientific. But when you know, you know.  

And that's all I got. Looking ahead: I can guarantee I'll soon be making my annual Vikings to win the Super Bowl bet. Almost 30 years making this bet. Not a single time winning. And this is about my only guarantee.  Stay well and healthy everyone. 

Last years winner loser:







Friday, May 13, 2022

LLS Virtual Big Climb

 Tomorrow, May 14, is the LLS virtual Big Climb. The LLS is an important organization for all blood cancer patients and their caregivers. I've done the Seattle Big Climb twice. Once pre even knowing what myeloma is. And the other time was a couple of years after my diagnosis. Tomorrow I'll do a long walk and incorporate some stairs in a nearby parking structure. I recently hit 11 years since my diagnosis, so the virtual climb is a bit of an acknowledgement about how far I have made it since I was diagnosed. 

Thank you all for your donations. And a huge thank you to the anonymous donor who donated $500. Super generous and hugely appreciated.  Also thanks to family, friends and loved ones who have supported me through these past 11 years.

And for good measure, click anywhere on this sentence to go to my fundraising page. 

And also for good measure, let's recap what my led to my diagnosis. In early 2011, I was riding my bike to work every day. Rain or shine or wind. It was ten miles each way and I loved it. Around February, I started to feel a little tired on my normal ride/commute. Catching my breath, on a final hill before I reached my my office, became more of a chore. As March rolled around, the struggle on my daily ride increased. At first I thought I was just getting older and heavier and that I needed to lose weight and get back into shape. By April, the tiredness followed me everywhere. I was getting night sweats every nights, soaking the sheets. I was also getting low grade fevers. I went to my primary care doctor and he saw something not right in my blood work and he started testing for everything, except cancer and myeloma. I was taking naps at lunch and I recall talking to someone at my desk and I dosed off right in the middle of a conversation. In late April, I was in Las Vegas for a friend's birthday. Within three hours of my arrival, I was burning up and was exhausted. I went to my hotel room, went to bed and was on fire and freaking out a bit. I slept 12 hours and woke up the next day feeling good. Nonetheless, I decided I'd fly back home that day. Before leaving, I met my best friend to let him know what was up. Walking through the casino, I had a strong feeling that I was dying. Scared the crap out of me. The feeling felt strong and was something I knew I couldn't ignore. It was the first of many semi-spiritual occurrences that are a regular part of my 11 years with myeloma. Back home, a doctor called me to say that I was so anemic that he was hospitalizing me immediately. My blood counts were dangerously low. I'd never stayed in a hospital before and it sucks. Anyhow, for 5 days, test after test was run and nobody knew what was wrong me. Eventually a kidney doctor noted that my kidneys were near failure. With that doctor I learned what bad bedside manner is. After five days, Dr Phan, a hematologist, was making the rounds and he knew immediately that I had myeloma. He did a bone marrow biopsy, discharged me and told me to come to his office the next day. On May 2, 2011, with Leslie and my mom, we went to Phan's office. Before we saw him, he had me go to a lab upstairs to run some blood tests. There I was slightly entertained by a heavily tattooed person who was on the phone telling someone he didn't like needles. Anyhow, after the blood draw it was back to Phan's and he gave me/us the news. Shock! I started treatment the very next day and I have been in treatment ever since. Pure craziness. And that's my story, whether I like it or not. 

Tuesday, May 10, 2022

It's Out!!

 The Port saga is over. It was surgically removed in Mid-March and I'm very glad the sage is over. My wife and I met with a vascular surgeon in February. He described the process and said that I'd be knocked out using fentanyl. When he said that, my brain went into overdrive. Fentanyl?! I questioned him about safety. He said, if I wanted, they could do a more serious surgery where I'm really knocked out. Umm...nope.I've had my fair share of procedures over the past 11 years. (I'm including foot surgery that was pre-diagnosis and is a whole other story on its own) I've never been too worried or concerned leading up to any of these procedures or surgeries. But leading up to port removal, I managed to freak myself out. I wondered if my luck had run out. Honestly, when diagnosed in 2011, I didn't expect to still be alive in 2022. So, there's a part of me that is waiting for that other shoe to drop. I've been really fortunate up to this point.

Because I had talked myself into being worried about the minor surgery, leading up to my port removal, I reached out to some folks to let them know I love them and appreciate them. I pondered making apology calls to people I may have wronged. Note, when I was diagnosed, I reached out to a couple of friends to apologize for minor infractions, including one friend to say I'm sorry for not admitting to losing a life preserver when on his boat, way back in 1988 and a childhood friend who's football book I never returned when we were 13. These apologies might have made me feel better but didn't really accomplish much. And so, prior to the port removal, I thought about again contacting certain people to apologize. But did I truly want to do this? And really, was I just being over dramatic? Before being diagnosed I hadn’t had any exposure to cancer. My pre-conceived perceptions of a cancer journey were shaped by tv and movies. And as we all know, in real life, cancer is nothing like a movie. I decided that I’d hold off on the apology tour for now and instead would use my own regrets and mistakes as life lessons. This seems sufficient.

The surgery was straightforward. I was wheeled into a very white and very bright room. The team was all there, waiting on the surgeon. The anesthesiologist actually seemed annoyed that the surgeon kept him waiting. My right arm was placed on a platform at a 90-degree angle from my body and strapped down. Strange. I was asked to turn my head so they could shave my chest. And that's the last thing I remember, until I woke up in the recovery room. I hung out there for a couple of hours and then I was released. I got in a wheelchair and was wheeled to the hospital lobby where Leslie was waiting for me.

And that's it. I now have just one port. It's on my left side and works great. A week later I had a small skin cancer removed from my forehead. The scars are accumulating. But I'm still here and most likely I'll have other opportunities to apologize to folks...or not.

Sunday, May 1, 2022

Eleven!

 

Joe Kapp, Number 11, led the Vikings to the Super Bowl after the 1969 season. Unfortunately, they lost the game, but Kapp was absolutely tough.

May 2, 2022 will be my 11 year cancerversary. It's been a whole year since my celebratory bike ride and fund raiser. Time flies. Tomorrow on May 2, we'll be having needed plumbing work. Life certainly does go on. Headaches and annoyances included. Nonetheless, we'll get some donuts or some kind of treat to acknowledge still being alive and kicking.



Saturday, April 2, 2022

2022 Fund Raiser For the Leukemia and Lymphoma Society

Matt's Big Climb Fundraiser!!

In 2012, I did the Big Climb in Seattle to raise money for the LLS. It was only a year after my Multiple Myeloma Diagnosis and it was a celebratory milestone for me. In 2006, I also did the Big Climb, knowing nothing about Myeloma but knowing I wanted to raise funds for a cancer organization. In May of this year, I'll reach 11 years since my diagnosis. Myeloma is incurable, so I'm still doing treatment. For me and countless other blood cancer patients, the LLS is an invaluable partner in the cancer journey. They offer insurance and prescription financial assistance. They provide support to newly diagnosed patients via their First Connection program, which I volunteer for, knowing how scary the words "you have cancer" are. They fund research, have education programs and the list goes on. This is why I am raising funds for the LLS. This year's event is virtual, nonetheless on May 14 I'll be climbing over 1,500 steps in a parking structure, raising funds for the LLS and celebrating my 11 year cancerversary.
 
Please join me in supporting The Leukemia & Lymphoma Society (LLS) by making a donation to my fundraising campaign. Thanks to your support, my efforts, will help fund the therapies and treatments and help save lives today.
 
LLS's continued advancements over the years, are responsible for the blood cancer survival rate doubling and tripling; in some cases, the survival rate has even quadrupled.
And many LLS supported therapies not only help blood cancer patients but are now used to treat patients with rare forms of stomach and skin cancers. They're even being tested in clinical trials for patients with a range of cancers including lung, brain, breast, pancreatic and prostate cancers. LLS funded drugs are now being tested for patients with other non-cancerous diseases like Diabetes, Rheumatoid Arthritis and Multiple Sclerosis.We really are changing the face of blood cancer!
 
All donations are greatly appreciated and are tax deductible. They'll not only support LLS research but patient services, advocacy, public and professional education, and community services as well.
Please visit my Web site often and bring friends who would also like to donate!
On behalf of blood cancer patients everywhere I thank you for your support! For more information about LLS, please visit lls.org

Monday, February 28, 2022

What to do, What to do

 When I was diagnosed, I was in shock, depressed, angry and in a way relieved. I'd been sick and getting progressively sicker for a few months, leading up the diagnosis. It was good to know what I had. But to be clear, the feeling of relief was way way and way lower than anger and depression. Blasting through 4 different treatments in the first year sucked and really strengthened the depression and anger. Anger at times was the overwhelming feeling. I started this blog because I didn't want to talk to anyone. I just wanted to be left alone and figured I'd catch up with folks on the other side. I assumed I had about two years of life left when diagnosed.

Fast forward nearly 11 years to today, and I'm still here, healthier than I've been since before I was diagnosed. And the blog is still here. It's still a way to keep friends and family up to date. My mood varies though between wanting to be open about my health and wanting to silence all external contact. Of late, the silence sentiment runs high. 

With Covid, I've only done telemedicine appointments with Dr Phan, which is fine when I'm doing well. And I am doing well, better than I could have hoped for.  But the thing is I don't want to talk or write about how well I am doing. As I told Phan, it's boring. And I feel like as a giant asshat saying I'm bored, when good friends are having challenges. Survivor's Guilt is real. And maybe boring isn't the right descriptor. Monotonous might be more appropriate. Take medicine, see doctor, do infusion, repeat. Ad Infinitum.

Despite the good health, I still am overloaded with appointments. I've got a surgical appointment to have my calcified port removed. Leading up to it, I have to get an ekg, chest x-ray and blood work. Argh. Also coming up, it's yet another MOHS procedure on my forehead to remove a Squamous Cell Carcinoma aka mild skin cancer. Meanwhile, Dr Phan hasn't been able to locate Evusheld, the synthetic antibody that might give me protection against the virus. I'm now on a wait list at Cedars Sinai to get it. No idea how long it'll take to get it. 

My walking marathon continues. 159 miles in January. 130 in February.  I'm training for something, but for what, I don't know. 

Oh, have I mentioned before that despite having cancer, regular life doesn't suddenly stop, some of it is  annoying and some of it is outstanding, in fact better than before myeloma. Bills, neighbors, house following apart, friends, relationships, laughs, love. I was fortunate enough to be able to retire and focus on health. It's great and beneficial to how I feel, but what the fuck have I accomplished since retiring? Not a whole lot. I'm a little sheepish about that. And I have to say that the farther away I get away from work, I'm not sure how I managed it.

Obviously I don't write nearly as much as I used to. I've thought about shutting the blog down before. I'm gonna keep it going for now. But for all the reasons discussed above, I'm changing the focus of my blog. It's not gonna be about my myeloma journey. Yes, I'll share crucial treatment information. But I'll instead share stories of and by other patients. And I might share some other stories about me...but not about my myeloma. Is it permanent?  Who knows. But I just can't write about it anymore. It's already in my head nearly 24/7.


Tuesday, February 15, 2022

International Myeloma Foundation and Yelak Biru

 Yelak was one of the first patients I met when I was diagnosed. He was very young when diagnosed and when I met him he was in his 14th year of living with myeloma. I remember (and he remembers) asking him how the heck he had lived with the uncertainty for so many years. It was unfathomable to me at the time. He said that at some point you just accept it. You don't forget you have myeloma, but you carry on and aren't always in a panicked state. I'm paraphrasing. Anyhow, he's now at 25 years and is the head of the International Myeloma Foundation and I'm rapidly closing in on 11 years, and Yelak was right on. 

He's the best possible choice to run the organization and here's a video of Yelak talking about his goals at the IMF.


Trevor Noah Interviews India.Arie

 

Breaking...Bad

After I was diagnosed in 2011 with multiple myeloma, I was in and out of the hospital with fevers and/or severe anemia. I fucking HATED the ...