Friday, September 16, 2022
Tuesday, September 13, 2022
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:
Friday, July 29, 2022
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:
Wednesday, June 29, 2022
Friday, May 13, 2022
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 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
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
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
Monday, February 28, 2022
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
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.
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 ...