Friday, June 30, 2017

Work Email from May 11, 2011

I'm down to perhaps 19 working days. I've been grinding since May 2, 2011, trying to balance work, life, chemo, etc.  Myeloma wise I'm good. Otherwise I'm pooped and have had a whole bunch of annoying side effects that I've had to deal with since getting back from Kilimanjaro. It is absolutely time to slow things down.


As I clean out my office and delete or save files and emails, I came across an email I sent on May 11, 2011 to coworkers letting them know what's up. It's quite surreal to read it.....


Good morning,

I am guessing that some of you have noticed I haven’t been around a lot lately.  This is going to be the case for the next 5 or 6 months, where I am working a reduced schedule.  I debated doing a mass email to people and I debated not saying anything. But as a compromise, I wanted to get some of you up to speed.   And you can feel free to share this information.  But also please note that I want this to be low key and somewhat of a private thing.  Plus, believe it or not, coming to work when I can, is a good thing. 

Having said all of the above, here’s the story:

A few months ago, I started to feel weak and fatigued, with an assortment of other weird things going on.  After lots of tests and doctors, I got a diagnosis early last week. I have something called multiple myeloma.  It’s a bone marrow cancer.  I already started chemo….twice a week with every 3rd week off. This goes on for 6 months. So far, I feel pretty good.  If you decide to do some googling, be careful…the typical patient is over 65 and African American male.  So statistics on this don’t necessarily apply to me. I can stay as active as I feel up to.  I am not riding my bike to work though, which sucks. I get too tuckered.

And I think that is it.

Matt

Monday, June 26, 2017

Sunday, June 25, 2017

Hand me an ax

Myeloma is one thing. And that's our main focus. We have it under control. I'm only doing my darzalex infusion once a month. That's good. But the new schedule and my 100% focus on my countdown to retirement translated into me totally forgetting to do my monthly 24 urine collection a couple of weeks ago. That's key to tracking my disease. With my tiredness, I was curious about how the numbers are doing. I went ahead and collected last week and should hear the results this week. I went ahead and did chemo without the results this past Friday. That's all fine and dandy. It's likely the pomalyst that I take orally that's making me tired. But we can't cut it out, it works in concert with darzalex and dex. And then this is a jacked up thing about health care and insurance and the FDA. You have to follow the FDA's guidelines for the darzalex infusion schedule. If for some reason the monthly infusion isn't enough to keep myeloma at bay and we wanted to go back to once every two weeks, insurance wouldn't cover it. Well that seems like bullshit.

As totally excited as I am about not working, I recently it also got me thinking about how I relate to the disease. One of the reasons, falling short of the Kilimanjaro summit bugged me is that it left me mentally feeling like a cancer patient. It was a slap of a reminder that I have limitations. That sucks. When I was younger and healthier, if I fell short of a challenge, I knew I would have other opportunities. When I did my first century bike ride with my brother, I made it about 98.5 miles. At that point my entire body cramped. I hadn't hydrated enough on a hot day. I learned my lesson and made sure that I was prepared and smart doing future rides. But Kilimanjaro, realistically when will I have the chance again? I'll find some sort of challenge that gives me something to shoot for. But you can see how for a week or so after getting home, I was bummed and it was more about the mental "oh right I have cancer".

So when thinking about not working any more, I get a slight emotional twinge knowing that I am retiring because I have this incurable disease. For the past six years, I've worked and tried to live as normally as possible. It's allowed me to feel like a champ and kick ass. It's time to slow things down.  But I don't want to feel like the disease has won. It hasn't of course. I'm excited for the limitless opportunities that now lie ahead of me. And of course, when you think about retiring there is a part of you that wonders how many years you have to live.  I might have a whole lot of years ahead of me. With myeloma you can have the cancer under control, but dealing with side effects can be non-stop. And 20 years of various annoyances doesn't sound super fun. With the cancer and the treatment, my immune system is pure crap. I've got a host of things that pop up. My latest bug-a-boo is my index finger. We've been trying to clear up a couple of warts for months. But with little luck. I have a dermatologist visit in a couple of weeks and we'll talk about how to keep them under control because they are getting ridiculous. And I'll tell you what, I'd be lying if I said I haven't thought about chopping off my fingertip. Do I really need it? Probably not. It's not like it's my big toe which keeps me from tipping over. And I don't mean to say I've thought about it a lot but it has crossed my mind.  I suppose for now I'll keep the fingertip, but we'll see how it progresses.



Epitaph for Cancer's Novelty

Great article from Cure Magazine

http://www.curetoday.com/community/jen-sotham/2017/06/epitaph-for-cancers-novelty

Monday, June 19, 2017

Tired, Tired and Tired

Lately I've been so fucking tired. It's getting fucking ridiculous. Berenson tested my thyroid and testosterone which both can be impacted by long term steroids and chemo. Both tested fine. I started pomalyst when I started darzalex and we've lowered the dose twice because it was tiring me out. But I've been on the low dose one meg for a few months and it's only in the past month or two that the overwhelming sleepiness has hit me. It's pissing me off. Thank goodness I only have a month more of work. Afternoon are getting real challenging. This weekend, I don't even know how much I slept, but it was a lot.  My myeloma numbers are great, so I'm thinking this could be the result of 6 non stop years of treatment. I'm feeling like an old man. I'm losing muscle mass, getting flabby and super cranky all the time. Plus my eyes are getting worse, hearing is on a decline, my ability to focus on one thing sucks and I continue to bruise and bleed with the tiniest little bump or scratch.  I'll tell you what, this myeloma is no joke. It's the gift that keeps on giving.




Other than that I'm fine. I did blood work today, see Phan on Thursday and have my monthly chemo Friday.

Tuesday, June 13, 2017

MMRF Webinar Series

The MMRF has a number of upcoming webinars, including one tomorrow June 14 on clinical advances in immunotherapy.


Follow this link to register.   http://eventcallregistration.com/reg/index.jsp?cid=70442t11pk



Wednesday, June 7, 2017

The Countdown Continues

I'm pondering pushing up my retirement date a week or two. I need to stick around to train my replacement who starts July 10, but after that I am free. I have been hugely tired lately. I get about 10 hours of sleep a night and it's not enough. Waking up in the morning is a real challenge. I'd be lying if I said it didn't have me wondering what's going on. I'm also on this weird slow weight gain. Granted I'm not working out much, but I watch what I eat. My labs all look good. My kidneys are better than ever. So I'm not sure what is up. It could be remnants of the ear/sinus infection.


I'm on monthly darzalex. Berenson wants to check my blood every couple of weeks because he's not sold on the once a month infusion. But our hands are tied. FDA says that is what we do and insurance will only pay for once a month.


I'm seriously grumpy and on edge. Lately at work people tell me they're jealous or say it must be nice or that I'm lucky. In my mind, I'm thinking fuck off all of you, I have an incurable cancer, that's not lucky. Right now those thoughts are in my head, but I'm edging close to reminding people why I am retiring. That will certainly make for elevator awkwardness.

Friday, June 2, 2017

61 aka 6 years one month since diagnosis

Pulling away from the 5 year median survival.




Traffic Jam in my Head

I've been getting over an ear infection that had my right ear clogged for about two weeks. It totally impacted my hearing, short term fortunately. It's still not perfect but much better. But the clogged sensation has moved to my nose and partly into my throat. I'm not sick, just clogged and it's fricking annoying. I went to the ENT (ear nose and throat) a couple of weeks ago. We started with antibiotics. Didn't really help. Then they drained the right ear, which hurt like holy fucking hell. Hurt and they told me not to move while poking a hole in my ear drum. Never again.  Anyways, with the myeloma and my lowered immune system we always lean towards being over cautious. So I went back to the ENT this week and they did a scan of my head, to make sure it's not some raging sinus infection. It's not, it's just going to take time to clear up. We did discover I have a deviated septum, which might explain why I wake myself up with my own snoring. (side note, I am rapidly becoming old).  Anyhow, here is one of the scans of my noggin.







MMRF Webinar

Clinical advances in Immunotherapy in myeloma.




http://eventcallregistration.com/reg/index.jsp?cid=70442t11pk

Thursday, June 1, 2017

Webinar on State-Based Cancer Advocacy

The National Coalition for Cancer Survivorship has a webinar tomorrow (Tuesday Sept. 25) on how to get more involved in cancer policy in you...