Thursday, December 3, 2020

Enjoy Every Sandwich

Ten years ago, I was feeling on top of the world. I was 49 and thinking about a momentous 50th birthday celebration. My long time foot issue was finally healed. I had a job I liked. Leslie and I were happily living together. Gracie was already proving to the best companion I could ever hope for. But I imagine I was also starting to feel some fatigue and energy loss. I had given up eating meat and I initially chalked up the fatigue to not getting enough protein. It was hard to imagine that just a few months later, I'd be hospitalized because I was severely anemic and shortly thereafter diagnosed with multiple myeloma. 

Fifteen years ago, Hurricane was still around. Gracie hadn't entered the picture. Hurricane (nee Champagne) was the opposite of Gracie. Yes, loving. Yes, she was my baby. But Hurricane was a lady. Very dainty, very mellow, very sweet. Gracie was a lovable oaf. Klutzy. No respect for personal space. Fifteen years ago, I was also doing pretty well. In late 2004, my stepfather, Ed, passed away. It was really my first experience as an adult with someone very close to me dying. I knew I was supposed to be sad, but I wasn't sure how that sadness was supposed to manifest itself. 

When I was diagnosed and rather sick, I had a lot of dreams with Ed in them. The specifics varied but generally, I'd dream that I was trying to get somewhere and Ed kept getting in my way, throwing up obstacles.  The dreams were vivid, and I took them as a sign that it wasn't my time to go yet. 

Lately, I've had dreams with Hurricane in them. And in my waking hours, I often think I see Gracie roaming the house and yard. I swear she almost tripped me the other day. She loved to be underfoot. 

I've done a lot of dumb things in my life and made some mistakes. But generally things have worked out for me. I'd have to scratch and claw a little bit, but I'd also often have an easier path than perhaps I'd earned. And I'm not so sure that has been a good thing.  I'm not sure I always considered others. Suffice it to say, I was decent at thinking about me and shirking responsibility. 

Also, suffice it to say, I waited for things to happen. Despite having a degree in planning, I really wasn't great at planning. In fact I was horrible as planning (my life that is) I'd go with the flow. I'd follow my gut. I'd act (out) on emotion. I mean that's what Malcolm Gladwell said to do. Right?

Now as I inch up on ten years with myeloma and rush to 60 years old, I'm finally putting some thought to future plans. What lessons can I glean from Gracie, Hurricane, Ed, and others people and animals who have influenced me.

I passed four years on darzalex in November. It continues to easily be the best drug I've been on. Thank you darzalex! A few months back, I did a lot of tests for a rheumatologist. I was constantly achy, sore, tired and low energy. All the tests showed nothing other than a 59 year old body that had been beat up by steroids and toxic drugs. But we also identified depression as contributing to my overall feeling of fatigue. We switched up my anti depressant medicine and it's made a world of difference. My attitude has definitely been upgraded. It's also made me see that depression wasn't something that cancer brought about. Clearly for decades, I'd experienced mood swings and roller coaster of emotions that played a role in my actions. 

Nonetheless, I'm doing good, feeling optimistic and trying to plan out what my next year or years or decades look like. I've been seriously addicted to westerns lately, and I imagine what it would be like to be a modern drifter with a horse, a dog and a fiddle. The late 19th century must have been wild. There was still the wild west, while at the same time, cities were industrializing and building bigger and higher. I also wonder when and how the switch from whale oil to petroleum took place. What a game changer. Neither option has been the best for the planet. It's no secret that Carl Safina is my idol and his writing has influenced me hugely. His description of sperm whales and their intelligence and family structure is eye opening. His writing motivated me to read Moby Dick; finally. It's a slow read, but a great read. 

I'm waiting on my most recent lab results. I'm certain they will be fine. And I'm certain that next week I'll do my monthly darzalex infusion. Cruise control as Dr Phan says. With the pandemic, traffic around here has been minimal. My 30 mile drive to Berenson's office takes only 30 minutes now. Pre-pandemic, it would take up to 2 hours regularly. Because of the short drive, I'm pondering doing my infusion at Berenson's office. It's a bit calmer, more spacious and quieter at Berenson's office. And if myeloma and the pandemic have taught me anything, it's that I like alone and quiet time. We'll see how this pondering turns out.

 

 

Friday, October 23, 2020

LLS Virtual Light the Night

The Leukemia and Lymphoma Society's Light the Night event is virtual this year. I've joined a team to honor Tom Swick, a friend and patient advocate who lost his fight with Multiple Myeloma earlier this year. The LLS is a vital organization to all blood cancer patients and Tom dedicated as much time as possible to the LLS to help and support fellow patients. I know these are challenging times, but if you can please consider donating to my team at the below link.

Matt's Light the Night Fundraiser

Tuesday, October 13, 2020

Latest News on Car-T Cell Therapy for Multiple Myeloma

Car-T is the next and greatest thing for blood cancer. My opinion is that it's not quite there for Multiple Myeloma. But what do I know? Not a lot.

Patient Power has a webinar this Friday October 16 on the latest news on Car-T for MM. Here's the link to register:

Car-T Webinar  from Patient Power

Thursday, October 8, 2020

49 to 59, Let's Get Real

 I was 49 when diagnosed. I'd never really been sick before. I was riding my bike to work every day, 20 miles round-trip. Life was grand. Then BAM. A major life change smacked me right up in my grill. My goals since diagnosis have been:

- live for two years

-live for five years

-keep it going for a long ass time.

As I hit 59 years old and rapidly approach 10 years living with this disease, I'm planning to keep it going for a long ass time. Let's review the latest and greatest. But first, the import stuff.

49 for the Vikings is Ed Marinaro. He was the runner-up for the college football Heisman Trophy in 1971. He played 6 seasons for the Vikings, including playing in two Super Bowls. After football, he starred in Hill Street Blues. Also of note, in the early 1980s, as I mentioned many, many posts ago, I had a huge crush on Lisa, who years before was a regular dancer on American Bandstand. Sometime before her brief time "dating" me, she dated Ed Marinaro. That absolutely got into my head. Lisa was best friends with Debbie, who passed away from myeloma a few years ago. Debbie was great friends with my Uncle Jan, who I worked for in the early 1980s driving a truck. I loved the freedom, but driving motivated me to go back to UCLA. 

 59 for the Vikings is Matt Blair, who played outside linebacker for the Vikings from 1974 to 1985. He was a key component of the Purple People Eaters and really really ought to be in the Hall of Fame.


Now let's get to business. I'm turning 59. My 50's have been a whirlwind and a blend of crap, lessons, ups, downs, and lots of self talk. Putting the global pandemic aside. 2020 has been a shit year. The loss and heartache has a whole lot. It goes without saying, but I'll say it anyways, losing Gracie continues to weigh heavily on both Leslie and me. I carry guilt and pain. It's been suggested by a host of folks that getting another dog would help the pain. I agree. But I am definitely not ready. It's gonna take time and it's gonna take a change in scenery. Before Gracie, there was Hurricane, who also went way too soon. I'm not one for curses and evil spirits, but I'm leaning towards the previous owners of my house leaving some kind of bad juju in this house. Seriously. And this year, I've lost friends who meant a whole lot to me and were beautiful people.

Also to the folks who got worried about me based on a couple of previous posts. Absolutely I am fighting depression. But also absolutely, don't worry, I am fine. Times are challenging. Most of the time I am positive and as carefree as possible. As possible is the operative phrase. As possible seems quite challenging of late. But I'm walking a lot and doing a lot of self talk and being more open with key people and it's getting me through. 

Myeloma-wise I'm in great shape. I've postponed two months running a bone marrow biopsy from Berenson, which will give us a baseline on plasma cells in my marrow, while I'm at my best. But, I'm doing so many darn tests for the rheumatologist and having a couple of skin cancer removals, that adding drilling into my hip seems like something I can put off for another month or so. Yes, I feel great. But every 3rd or 4th day I have body aches, fatigue and general feeling yucky. That's what the rheumatologist is trying to get to the root of. I will say that the aches and such do slow me down but don't really stop me from doing anything. Nothing that a 2 hour nap can't take care of.

My vision keeps changing. My current prescription definitely isn't sufficient. Two years ago, I got progressive lens which have been life changing, but again with the pandemic and all the other medical stuff, I'm not inclined to go in for an eye exam. 

Leslie continues to keep me safe. Chemo brain has absolutely set in, meaning short term memory is fading. She keeps me honest and safe. I miss my mom tremendously. She's now in Colorado and I'm trying to figure out when and how to visit sooner rather than later.

The Vikings..don't ask. I almost abandoned them this summer, but I couldn't do it. Instead my love/obsession is stronger than ever. They kind of suck this year, but that's ok. That's my team. Last week we met a server at a local place where we got food to go. He was born in Russian, raised in Minnesota and now lives here in California. We had a nice chat about the Vikings last Purple Friday and I've decided that at some point in time, he's getting all my Vikings memorabilia. He doesn't know it, but I know he'll give it all the home it deserves. I'm not sure when the gifting will happen. Probably not for a while.

I met an amazing 86 year woman at Dr Phan's this week. The bluest eyes I have ever seen and an attitude that really touched me. I could have spent the whole day with her, but no such luck. I briefly met her son in the waiting area. And I guess that's part of the cancer journey....the people. It's the people that keep me going and motivated and remind me that I'm actually doing a kick ass job. Myeloma is no smooth sailing, physically and emotionally. I'm in an emotional trough right now, but working my way out of it. Nothing that a couple of birthday beers can't help out. We're doing a belated celebration with Matt and Rich in two weeks. They've totally been quarantined, working from home and not going very many places. But with all my doctor visits of late, I feel it's best to stay away for two weeks, just to be safe. But believe you me, come October 23, we will be celebrating. 

And that's my story. Blah, blah, blah. Not too thrilling. Not too exciting. But we live to fight another day. And remember: Wear a Damn Mask and Vote!!!




Monday, October 5, 2020

Friday, October 2, 2020

Be Prepared for Open Enrollment

So....I retired 3 years ago. I stayed on my work's insurance plan for a couple of years. Then Medicare kicked in and I needed a Medicare Supplement Plan and Prescription Plan to ensure I'd be covered with my specialists and not totally wiped out by the cost of my oral chemo.

It's darn confusing.

Two great organizations that I turned to for help in understanding were: Triage Cancer and Cancer Legal Resource Center. Both have upcoming webinars on insurance and Medicare.  Here are links to those important sessions:

Triage Cancer: How to chose and use your health insurance

CLRC: Health Insurance updates and open enrollment for 2021

Also know that the Leukemia & Lymphoma Society and Healthwell Foundation have copay assistance & prescription assistance programs.

Enjoy Every Sandwich

Ten years ago, I was feeling on top of the world. I was 49 and thinking about a momentous 50th birthday celebration. My long time foot iss...