July 18, 2011 24/7
It's Monday and we're seeing Berenson, the myeloma specialist, today. I imagine we'll be changing up the chemo drug mix and discussing next steps. I am going to push for lots of stuff and lots of stuff soon. Bone marrow biopsy, kidney biopsy, start the stem cell harvesting process. I'm 3 months into this shit hole and it feels like zero progress has been made. In fact, it feels like the opposite of progress has been made. What's the opposite of progress? Crap, that's what. I think about this thing 24/7 now. The mental exhaustion is almost worse than the physical fatigue.
I'm not writing this post because I want some words of wisdom from anyone or any positive "atta boys". I am writing this, because I'm tired of it already. I have this October date in mind for going back to leading a somewhat normal life. I've always been active, healthy and independent. My life now is anything but those 3 things. When everyone talks about "quality of life", are we talking about how I am living right now? Cause this sucks. If it's October and I'm not improving, it might be time for me to emulate Marley in Marley & Me and find a tree to sleep under for my final days. I thought that was going to be a happy dog movie, but it sure wasn't.
Last night in doing some research on Berenson, I read a linked story from 2 years ago about a local, young police office and his brave fight against myeloma and how great he was doing. Curiosity got me searching how he is doing now....two years later. Two months ago...his memorial service. Awesome.
If my treatment changes and I start feeling worse, I'd imagine there will be a point where I can't work any more. Sure maybe I can collect disability, but how's that compare to working? It doesn't . And cause of my medicines and treatment, I won't be able to waste my monthly disability check on booze and junk food. What fun is that?
I want Leslie to lead a normal life. She's living this 24/7 and is amazing. But how fair is that...she needs to do other stuff once a while. I'm feeling like a burden and pity case to everyone. I don't like being a burden.
Jan and Michelle had a bbq at their house the other day. It was very nice of them. I got a lot of hugs and "how're you doing?", all with that pity look in their eyes. When leaving, one person said to me "don't be a stranger." Ummm...ok. I don't see you often even when healthy. Weird. Awkward. And the awkwardness likely comes from me. One of my best friends, Matt Arms, has been absolutely awesome during this whole time. But I worry that at some point he and friends will fade away.....24/7 myeloma conversation and new medicine talk will only take a friendship so far. Family.....family is tricky even in the best of times. We're all trying to figure out how to balance the family concern/worry with what my needs are. And like I've said before I need to get better at communicating and putting my foot down.
So you see, October is huge. I turn 50 and that's my target for leading a somewhat normal life. And that's why today and this week are huge in my mind and I am a nervous wreck.
July 19, 2011 Dr B and the New Approach
Well, we saw Berenson yesterday. And it definitely gave me some hope. He talked about getting me to the point where I live a complete life....not quality of life. He was surprised we waited this long to change things up, given it was clear that doxil/velcade isn't doing anything. So he's got me on a whole different regime....starting today basically. He says we ought to see some quick results.
My kidneys worried him....more on that in a second. He couldn't believe that fuckhead Warner went on vacation, without following up with us. We need to be seeing a kidney doc once or twice a week. But, other than my anemia and bad kidneys, he said you couldn't guess that I have myeloma. However lab work shows it progressing.
He sees no need to do a kidney or bone marrow biopsy. We have enough information already and need to go after the myeloma. He doesn't see the benefit of the stem cell transplant....that all you are doing is treating a symptom and not really killing the myeloma. His goal is to kill the myeloma. Leslie and I left Dr B's office feeling pretty good about things.
Then last night Phan called, we got the results from the morning blood work. Fucking kidneys....even more jacked up. We need to act quick and need to avoid dialysis. That was kind of a bummer. I was going to go to work today, but the plan instead is to see a kidney doctor this morning. Warner is absolutely out of the picture, so it'll be a new doctor who hopefully actually cares about their patients. Warner had me do the 4 day in a row saline drip and ran some tests. And then he never he followed up with us.
And I think that is the gist of yesterday. There's hope and hopefully I'll see progress in the next week or two. I need some positive results.
July 22, 2012 Maintenance
Howdy all, Truly nothing to report. Started maintenance this past week. It's one day of infusion, every other week. Minus the treanda...which of course is the heavy hitting chemo drug. I have a new steroid that I take at home. And that's it. We watch everything closely. So I think I do full labs this weeek. And then monthly visits with Berenson. I feel good and the goal is to keep me where I'm at. Stayed tuned.
July 19, 2013 New Maintenance Cycle
This afternoon was chemo. And that means dex. And that means insomnia, anxiety, irritability. Sometimes I'm ok with this. I'll use the wiredness to my advantage. I'll work out. I'll write. I'll plan. Not this time. This time it is pure anxiety and irritability. Wow. I've been doing some pacing. I did get a couple of hours of sleep, but that's over. I don't like to take sleeping pills, so I am kind of stuck. Whew wee....hold on everyone. In a couple of hours I need to get ready for work. I'll ride to work on my old univega. It's heavy as all heck, but that'll help burn some energy. Oh and I'm hungry. But I can't just eat and eat and eat. I worked too hard to get into shape. Plus I don't have any cereal in the house. Cereal is my favorite dex food. Dry. No milk. In a glass. Lately Puffins original or cinnamon from Trader Joes is tops. So good. Many many years ago, i had the best t shirt. It was a cereal shirt. A white t shirt with a 6 by 6 matrix of different cereals on the front. Loved that shirt!!!!!
July 26, 2014 Machine Mode
Marshawn Lynch is a running back on the Seattle Seahawks. When he runs, they often refer to him being in Beast Mode. Yesterday as I was walking from my car to Berenson's office I decided I was putting myself into Machine Mode. I finally feel normal after a month and half of surgeries, pain, chemo, fatigue and mental exhaustion. But that's all behind me. I feel good. I went to the gym yesterday. First workout with the new port. And I guaran-fricking-tee that I'm not doing any exercise that might mess up this port. I've learned my lesson. By machine mode, I mean that I'm focused. I'm focused on my fitness, on my nutrition, on my mental state, and I'm focused on being focused. I'm going to be like a fricking machine. I just operate and that's all.
My labs this week were awesome. We saw a giant dip in my protein, paraprotein and kappa light chains....all my myeloma markers. I had some drama with the lab (5th time in 9 months), where they didn't run the upep. The upep is vital. It's taken from a small urine sample. In the past they've actually lost my sample and they've also lost blood. Who does that? Suffice it to say, I'm changing labs asap. But this time, they didn't lose it, but they didn't test it. So after a few phone calls and some yelling and some stress, they tested my sample and all is good. Of course, since the lab had issues, a small part of my brain thinks they fucked everything up and the numbers aren't valid. That's doubtful, but it was a thought in my noggin. Given my numbers, I figured for sure I'd be back on maintenance. Berenson was very happy the results. But he thinks since we had such a big drop, that we ought to stay aggressive and beat the myeloma down one more cycle. Then maintenance. Dr B said if I really hated my treatment I could do maintenance. Sure I hate my treatment, but it's the dex I hate and that comes with maintenance as well. So what the heck, we'll do another cycle of the hard stuff (treanda aka bendamustine). Dr B also said that other patients are now on my regimen. He called it the Goldman regimen. Hey, I'm somebody!!!!!! The point is we are staying aggressive. We're putting myeloma on its heels. My foot is on the pedal. Full steam ahead.
I also talked to Berenson about my recent surgery and how we can keep my immune system up and not have me susceptible to viruses and such. Leslie and I think that my constant taking of antibiotics can't be good for me. That alone might impact my body's ability to fight stuff off. But Berenson (as doctors tend to do) dismissed this. He said there are no studies that show long term use of antibiotics is bad. He also said that it's the drawback of treating myeloma....i.e. I'm gonna get shit. We treat the myeloma first and then deal with the other things. I think all patients get familiar with this. Another reason why I need to be in machine mode. Machine mode with a Teflon coating.
Quickly I want to acknowledge two people. First is Leslie. She's done an amazing job as my caregiver and is vital to me being where I am with this myeloma. She's now acting as caregiver to her dad, who has a host of issues. It's a tough situation. I feel bad that she doesn't even get a chance to think about herself...to focus on her being her. I think being sick has a guilt inducing effect on patients. Nobody, me included, wants to be a burden on anybody. We want to be strong and not impact other's lives.
Second, a quick shout out Brad. He's the strongest and most focused person I know. He feels great but also has a challenging myeloma situation right now. I have no doubt he is going to kick this cancer's ass, but let's all send positive thoughts to him.
July 26, 2015 Hit the Wall
It's been a while since I've wrote anything substantial. Just haven't been feeling it. There's nothing really noteworthy with my myeloma. But noteworthy is a relative term. And that's the thing with myeloma. Nothing going on doesn't mean we're kicking back worry free. In the past two months, I had a nasty cold that verged on pneumonia and hospitalization. We beat that back, avoiding the hospital, after finding an awesome pulminologist. I'd be lying if I said I didn't spend one night in bed wondering if that was my week to die. Then I lost a good friend to myeloma. Brad passing away is a tough one to move on from. Then I've had an achy back for a couple of weeks. Normally we'd let it go. But given I have myeloma, I've had to do a full body skeletal survey and bone density test. This Saturday is an MRI. Mind you, I'm claustrophobic, so this should be interesting. Also note, that my myeloma impacts my kidneys, I haven't had any bone involvement but the question is has my myeloma morphed into something else. Berenson thinks no and that doing bone surveys, etc is unnecessary. Phan on the other hand says we need to err on the side of caution. I am guessing it's nothing but we gotta rule bone issues out. And then this week I've been tired as all hell. It's a tired that is similar to the tired I was feeling right before I was diagnosed. So I'm thinking, ah shit, time to get off maintenance and attack the myeloma with one of the new drugs. But we did my full myeloma labs this week and all my numbers remain stable. That's good. However I am hugely anemic, almost anemic enough to warrant a transfusion. I haven't had one of those in two years. Instead, yesterday I got a Procrit shot to bring my hemoglobin up. And through all this, I'm working full time, working out, crushing it and living life. Easy? Heck no.
The summary: I'm still on maintenance, everything remains routine. A new cycle of maintenance starts next week. All is good. But it's been a scary, nerve wracking, emotional, wall hitting month or two.
And that's myeloma. It never totally goes away. Every day, every week, every month is a challenge and a victory.
July 18, 2016 Does Incurable Mean Terminal
Hell if I know. I read the below article in the LA Times today. It reminded me of how when I was diagnosed, so many people and loved ones visited me and sent their prayers and wishes. I think we all thought, and that includes me, that I wasn't going to be around long. Looking back on that first year, it's quite surreal. So much I don't remember. Recently friends mentioned coming to see me at my house. I have no memory of that.
Now five years later I'm still kicking. As I mentioned, the Colorado training with my Kilimanjaro team was truly life affirming and life changing. Been thinking a lot about how I use the affirmation and change going forward. I'm not sure.
July 22, 2017 1 Week, 5 Days, 44 Hours
This is it. Basically I'm done already . This week will be lunches, saying thanks to lots of people, continuing to leave files in an orderly fashion and on Thursday something is planned for me. Last week it hit me that I'm leaving and some emotions started to peculate up.
Early on in this cancer journey, battle, challenge, scare, what have you, I tried to keep going to work just to have a slice of normalcy and to not think about cancer. There were weeks where I'd be lucky to work 10 hours and that was a struggle. I've been back to full time for probably 3 years. It's time to hang it up. Right now my energy goes towards work and I need to redirect it towards myself. It'll be interesting and great. High 5!!!!!!!!
July 19, 2018 Getting My Learning On
Don't get me wrong, myeloma and cancer suck. But I will say that since being diagnosed I've had the chance to meet some of the most passionate, caring and inspiring individuals. On Kilimanjaro I was with 5 other patients who are not letting the disease slow them down. And earlier this week I was in Boston to spend time with patients and caregivers who are so smart about the disease and so dedicated to supporting and helping others impacted by myeloma. I also got a chance to tour the facilities of Takeda Oncology where they make velcade and are working on finding new and better treatments. I used to feel so out of place and not smart when I was with these folks. But for the first time, I feel like I kind of understand what they're talking about. I've got a ways to go, but I am getting smarter about the disease. I'll try and share some things I learned in a future post.
July 14, 2019 Two Days in Myeloma-A Short Screenplay
EXT. PARKING KIOSK AT THE ENTRANCE OF A PARKING STRUCTURE
A car pulls up to the kiosk. The window goes down. From the driver’s point of view, an attendant slides open a window on the kiosk and leans out.
Good morning. It’ll be five dollars.
Will you be coming back tomorrow?
Tomorrow no? Friday, yes.
Sorry, if you were coming back tomorrow, it’d be 8 dollars for the two days.
Have a blessed day.
INT. PARKING LOT STAIRWELL
INT. EXAM ROOM
Matt sits and looks at his phone. On the chair next to him is his hat and sweatshirt. He’s already weighed in and had blood pressure taken. There’s a gentle knock on the door. The doctor walks in, holding an open laptop in his hand. He has a serious look on his face.
Why the glum look doctor?
Have you seen your lab results yet?
Um, nope. Usually I do, but not this month.
Dr Phan sits down across from Matt. He places his lap top on a small rolling table. He rolls the table so Matt can see.
Ok, well look. A couple of things have changed.
Uh oh. Really?
Yeah, see you creatinine? It’s gone up. And your m spike has gone up. How are you feeling?
Well, I’ve been more tired than usual. And the other day on a walk up the hills of Signal Hill, I had difficulty getting deep breaths. Kind of like when I first diagnosed.
When did you do your IVIG? There’s no literature to support this, but my theory is the IVIG can impact the efficacy of darzalex.
(IVIG is an infusion of immunoglobulins to help boost a patient’s immune system.)
Well, I did only half the IVIG dosage last week, since there is a shortage. Seems like no one wants to donate anymore. But, you know, I did labs before I did the IVIG.
Well, we may want to start thinking about changing things up.
Yeah, I’ve been on darzalex for over two and a half years. Longest I’ve been on any drug.
That’s a while.
Definitely I’ve been on cruise control.
Well let’s do this. Don’t do another IVIG. Do your darzalex this Friday, then we’ll check your labs and see what’s up.
What else is going on?
I took a ceramics class. Here let me show you.
Matt grabs his phone and searches for photos of his ceramics projects. He hands the phone to Dr Phan.
Nice. I wish I had time for something creative. What about the guitar?
It’s on my list.
All right, well keep me posted. I’ll see you next month.
EXT. MARINE MAMMAL RESCUE - LATER THE SAME DAY
Matt is dressed in large waterproof overalls and knee high boots. He walks out of a pen, carrying an empty container. Inside the pen are sea lions, eating fish. Matt walks in to the break room.
INT. BREAK ROOM
Matt goes to locker and grabs his phone. He walks to a chair and sits and dials.
Hi, this is Matt, I’m wondering if I can get in to see Dr Berenson this week.
Sorry he’s busy all week.
He doesn’t have anything for a quick visit?
Afraid not. Plus he is leaving early Wednesday and Thursday, so he is jam packed.
Argh. Ok thanks.
Matt hangs up. He dials another number.
Hi. What’s up.
Can you do me a favor?
Call Susan at Berenson’s office and see if she can squeeze me in this week. I haven’t see him in a while and I think I should.
Yeah, let me check.
Plus. If he has anything, also see if we can get in to the kidney doctor the same day.
Will do. I’ll let you know.
EXT. PARKING LOT OUTSIDE MARINE MAMMAL RESCUE - EVENING
Matt is walking to his car. He makes a call as he walks.
Hello. I’m done.
Cool. Long day.
Yep, lots of animals here right now.
I talked to Susan and she was able to fit you in at noon tomorrow. And Dr Froch also had an opening tomorrow.
INT. EXAM ROOM - THE NEXT DAY
Good morning, good morning. How are we doing?
Pretty good, pretty good.
Hey, I like your shoes.
Ah thanks. Converse.
So what’s going on? Your labs all look good.
Um, really? Dr Phan thought he saw some changes.
Hmm. I don’t see it. How are you feeling?
A little more tired lately.
A lot more tired lately. He’s taking daily naps.
That’s true. And it takes a while to wake up from the naps.
Well, everything looks fine.
Even my creatinine and m spike?
Yeah, they’re up a bit, but I don’t think it’s anything to worry about.
Dr Berenson turns to the young scribe.
You should have seen this guy when he first came in. How long ago was it?
He was in horrible shape. We had to really get creative to save his life.
Listen, you’re doing great. Let’s not change a thing.
EXT. TREE LINED STREET - DAY
Matt and Leslie are walking down a steep hill to where the car is parked.
Well, that’s confusing. Talk about two different messages.
Sure is. I guess you just do your treatment and we’ll see what labs look like next month.
I guess so. Sheesh, that’s the thing with this fucking disease. It’s such a mind game.
They arrive at Matt’s car. Screen fades to black. A message is displayed: To be continued.