Friday, November 10, 2017

Intravenous immunoglobulin (IVIG)

Patients with multiple myeloma often have low levels of the normal antibodies (immunoglobulins) needed to fight infection. This can lead to problems with lung and/or sinus infections that keep coming back. The patient’s level of antibodies in the blood can be tested, and if it’s low, antibodies from donors can be given into a vein (IV) to raise the levels and help prevent infections. The antibodies given are called IVIG or intravenous immunoglobulin. IVIG is often given once a month at first, but may be able to be given less often based on blood tests of antibody levels.

What's Happening ver 1.0

So...there's a lot going on and then again not much. I recently went to New York for the MMRF annual gala. I definitely wasn't planning on going but my Kilimanjaro teammates  thankfully convinced me to be there. It was great seeing folks, I tell everyone the greatest part of the trip was connecting and bonding with the other patients on the trip.  There is the Colonel (Gary), Captain Terry and Marty. I love those guys. Terry, Marty and me spent a day exploring NYC. So much fun.  Hopefully sooner rather than later we'll reconvene. At the event I meet the 71 year Chuck Wakefield, a myeloma patient for 15 years. He recently rode his bike across the country with the MMRF. He is truly an inspiration. Me? I'm in such crappy shape that a short ride is an effort for me. That's bullshit, I'll tell you that.

The past weekend Leslie and I went to International Myeloma Foundation's (IMF) annual comedy celebration.  It's hosted by Ray Romano who costarred with Peter Boyle in Everyone Loves Raymond. Peter Boyle was in Young Frankenstein and (unrelated) died from myeloma over a decade ago. His wife started a foundation that works closely with the IMF. This was the 11th annual comedy event and was awesome.

I spend Mondays working at the local LLS office (Leukemia and Lymphoma Society) working on their First Connection program which is a peer to peer program that connects newly diagnosed blood cancer patients with folks who have had the same cancer. It's a great program. In the office I'm helping coordinate those connections. I've actually been involved in the program for a couple of years, speaking every to months or so a newly diagnosed myeloma patient. As much as I love the program, I'm a bit torn about the LLS. They had an insurance copay and premium assistance. Had is the operative word. Without warning they closed the program, indicating it had no more funds. It left folks in precarious financial positions. There have been a number of new drugs introduced in the past few years and life spans have been extended. But that shit ain't cheap. Paying for cancer drugs, even with insurance, is a challenge. Now that I'm not working I am paying for more own insurance, but I had planned to apply for the LLS assistance. If I knew when I decided to retire that the program was going away, would I have altered my plans? Doubtful. I was pretty mentally checked out and pretty tired of being tired all the time.

Some of the pharmaceuticals have copay assistance programs. For instance with Darzalex this year I had no out of pocket copays, thanks to Janssen Oncology. The health care industry is complicated, challenging, great and horrible all wrapped up in a messy burrito. Now that I'm on Social Security disability, I'll be eligible for Medicare in two years, but I'll still have to supplement it with my work insurance.

Speaking of Darzalex, it continues to work great. I've been on it for over a year now. Once a month I go to Phan's office for about a five hour infusion. Side effects are minimal, although I notice I get a cold almost every month about a week after infusion. In speaking with other folks on the drug, they too get colds. Some of them are getting a monthly IVIG infusion that helps prevent the colds. I'm planning to ask Phan and Berenson both about this. Pretty tired of getting colds that hang on for at least a week. Don't ask me what IVIG is.

I'm also taking pomalyst, an oral chemo, for 21 days a month. When working, it kicked my ass, energy wise. Not working, it's no problem. But it does jack up my immune system. Warts and skin cancers have become never ending. I have to schedule yet another MOHs surgery on my forehead for squamous cell carcinoma. It'll be my third one since the end of July.  I'll tell you what, when you combine steroid puffiness and muscle loss with skin cancers and warts and a fat belly, my self confidence is super low.

Anyways, to sum it all up, I'm doing good. I'm losing weight, riding my bike more, trimming my beard and trying to get cool again.





Monday, November 6, 2017

How to Talk with with your Healthcare Team about What's Best for You

The International Myeloma Foundation (IMF) has a Living Well with Myeloma Webinar Series.  One of the many challenges, especially when recently diagnosed, is how to talk to your doctors and health care team. It all can seem overwhelming.

This Thursday November 9, the IMF's  free webinar will address this issue with:  How to Talk with with your Healthcare Team about What's Best for You
Join the IMF's Nurse Leadership Board members, Beth Faiman and Charise Gleason, for a Living Well with Myeloma webinar. This webinar will introduce patients to shared decision making and provide case studies illustrating successful communication between patients and healthcare providers that illustrate how to have more productive conversations with their healthcare team.

The link for  to register for this webinar:  IMF Webinar




Friday, November 3, 2017

ACA Open Enrollment Updates & Actions., Webinar on Nov 8

Important topic during important times. Weds November 8, 10 AM West Coast time, 1 PM East Coast time.

https://www.canceradvocacy.org/cancer-advocacy/cpat/webinar-registration/?mc_cid=554c6537c4&mc_eid=6d0d6ab800

Tuesday, October 31, 2017

Living Life Fully with Multiple Myeloma by Yelak Biru

Yelak was diagnosed 21 years ago at the age of 25 and is going strong.

https://conquer-magazine.com/issues/2017/vol-3-no-3-june-2017/33-living-life-fully-with-multiple-myeloma


Tuesday, October 24, 2017

From NBC News...Cancer is the biggest killer of America's firefighters.

Blood cancers are becoming almost an epidemic for firefighters. Exposure to chemicals is to blame.

https://www.nbcnews.com/health/cancer/cancer-biggest-killer-america-s-firefighters-n813411

uh oh..neuropathy?

I've been pretty fortunate that in 6 years I haven't had much of an issue with neuropathy.  Berenson has me taking 600 mg of Alpha Lipoic Acid every day that is supposed to combat the nerve issue.  Seems to be working.  Only when I was on Treanda (Bendamustine) did I have some neuropathy. It wasn't painful, instead I had a loss of feeling in my fingers tips. It made it hard to hold things and I definitely couldn't feel textures. It was an odd sensation, but all feeling came back as soon as I went off of treanda.

Since November 2016 I've been on darzalex (daratumamab) and pomalyst (wow, a year, time sure does fly by).  In the past couple of months, I've gotten an occasional stabbed by a needle feeling in my ankles or feet. It's very quick and is not an issue. But in the past few days, I've begun experiencing sharp pain in my pinky fingers when they are exposed to cold water. It stops when my fingers warm up, but when it hits, it is pretty noticeable. This morning, and despite the absurd heat wave we're having,  it was cool while I walked Gracie and I felt some pain in my pinkies simply from the weather.  Sounds like neuropathy to me. If it stays like this, no problem, but if it increases then I'll be a little frustrated.  We shall see.

Today is my quarterly dermatologist visit. My skin is rather vulnerable given my lowered immune system. Hence old damage or viral things that were able to remain dormant, now have a chance flourish. I've had 3 MOHs surgeries for skin cancers on my forehead. I've had two other surgeries in the past 3 years for skin issues.  Recently I was able to clear up warts on my finger tips, but now they are back like crazy.  So we'll see what the dermo says in terms of potential new tactics to fighting them.

Tomorrow I have a bone density test. My bones have been good since diagnosis (kidneys are another story). But, per Dr Phan, years of uninterrupted steroid use can weaken the bones. I don't think I have bone issues, but I can say that recently when I shake a person's hand, I feel like my right hand is being crushed. The bones feel tender and fragile.

The good news is my myeloma numbers remain awesome. Darzalex is doing the trick.

Wednesday, October 18, 2017

Update by the numbers

5 - Hours at my monthly darzalex infusion yesterday. I'm on the monthly schedule and all is good. Numbers are great. I've got a slight cold which is fairly normal for darzalex patients.

15 - In 15 days I'll be at the 6.5 year mark since diagnosis. It's all gravy from this point on.

56 - How old I am now. Hard to believe.

20:18 - Minutes to do a mile on the treadmill on Oct 13

18:55 - Minutes to do a mile on treadmill on Oct. 16

9:00 - Goal for mile. I used to be an avid runner. I gave it up because my body ached too much (pre myeloma) but after a trip to Ocean Beach, San Diego and seeing all the folks running, I'm ready to start up again. I need a goal/target and this is it. I also plan to start riding my bike often. I eventually might get back on a road bike and train for a century. Again, it's important to have goals that serve as motivation.

200 - How much I weigh. This is ridiculous

180 - Weight goal.

2.5 - Months since I retired. It's going great. I feel as good as I have in years. I'm collecting pension. Social security disability kicks in, in January. The LLS had an insurance premium copay assistance program that ended suddenly two weeks ago, right as I working on my application. Funds were depleted. So for now, insurance is out my pocket.

2 - In two years I will qualify for medicare. I'll need to pick up the cost of supplemental costs, but shouldn't be a big deal.

Upcoming So Cal Myeloma Conference & Webinar

There are a couple of educational events coming up.

The IMF has a free webinar on Nov 9 titled  Living Well with Myeloma: Shared Decision Making. Here is the link to register:  
https://register.gotowebinar.com/register/2365873431209187073

The MMRF has a  free Patient Summit on Nov. 18 in Los Angeles. Co-chaired by Dr James Berenson and Dr Amrita Krishnan from City of Hope. Here is the link to register:

https://www.themmrf.org/patient-summits/multiple-myeloma-patient-summit-los-angeles-ca-2017

Also the LLS is having a Light the Night ceremony in the Inland Empire on Oct. 28. You can create a team and fund raise or just attend and be moved by the experience. To learn more follow this link:


http://www.lightthenight.org/events/inland-empire

Sunday, October 8, 2017

Co Pay Assistance Programs

The Leukemia & Lymphoma Society, up until a week ago, had an insurance co-pay program that granted myeloma patients up to $10,000 per year to help with paying insurance premiums. The funds for that program were unexpectedly depleted last week, leaving many folks in a difficult spot.

Here are a couple of links to organizations that have insurance co-pay assistance.


o   Patient Advocate Foundation – Myeloma Co-Pay Assistance for Patients with Medicare, Medicaid, or Military Benefits. Qualified patients may receive up to $10,000 per year.
https://www.copays.org/diseases/multiple-myeloma


o   Healthwell Foundation – Myeloma Co-Pay/Premium Assistance for Patients with Medicare. Qualified patients may receive up to $10,000 per year. 
https://www.healthwellfoundation.org/fund/multiple-myeloma-medicare-access/

Friday, September 29, 2017

Two Months and a Day

It's been two months and a day since I retired. So far it's pretty darn nice. What have I been doing you ask? Two trips; Chicago last month and Philadelphia last week. Philly was to make some videos describing my darzalex and myeloma experience. Super fun. It was the real deal production production. Make up, wardrobe, lights, multiple takes and so on. Photos below. I was joined by two other patients on darzalex. Wonderful people.

Since July I've had two MOHs surgery on my forehead to remove squamous cell carcinoma aka skin cancer.  On Mondays I volunteer at the Leukemia & Lymphoma Society. I've had several lunches with ex-work people and that might cover it. I will say this, I feel a million times better not working. Energy is great. I can take afternoon naps. Retirement has been exactly what my old sick body and mind needed.  I'm getting my pension. Social Security Disability is in the works and I've applied for copay assistance from the LLS.

Today I took about a ten mile bike ride. While I've lost weight and have been working out regularly, I'm definitely not in bike riding shape. It might be time for the old man, upright bike. Leaning over the handle bars hurts the shoulders and hands and wrists. What the fuck?!

Mentally I'm doing alright. Still figuring out who I am and what my passion is. The conversations associated with my travel are quite cathartic, but also reinforce that I can't just be identified by cancer/myeloma. A friend of Leslie told her that life is art. Everything we do is art. This philosophy actually is helping me out.

Thanks to Leslie, we got Berenson to reduce my steroid dosage, reducing not just the emotional and energy ups & downs but also reducing the negative physical side effects of non stop steroids. Now what I'd love to cut back on is the baby aspirin. My blood and skin are so fricking thin, I'm constantly bruising and bleeding. I don't even know where they come from. Below are photos of my currently bruised foot and hand.

We're coming up on 56. Who would have thought?






Tuesday, September 12, 2017

Webinar tomorrow on Exercising with Multiple Myeloma

Follow this link to register for an hour long webinar tomorrow Sept 13 at noon west coast time/3 eastern. The topic is:

Exercising with multiple myeloma.



Friday, September 8, 2017

Tom Brokaw's Myeloma Journey

Brief, good read...

http://fortune.com/2017/09/08/tom-brokaw-health-cancer/

Thursday, August 31, 2017

56 Yikes

I'd like to think there is an old fable about an old man who is constantly trying to push a large rock up a hill. Every day he is struggles and pushes and each day he gets little a closer to the top. Eventually he reaches the top where other folks are just hanging out. Someone says he had been watching the old man push rock for weeks and he asks why he kept at it. The old man draws a blank and shrugs his shoulders.

See where I'm going with this? I'm not sure this fable exists, but it's kind of a decent metaphor for where I am at currently. I'm nearing the end of week 5 of retirement. It's great. While my job wasn't hugely stressful, I feel like a huge weight has been lifted off my shoulders. I'm relaxed and more energetic. Having my myeloma at a great place I'm sure helps. I'm keeping pretty busy. Volunteering on Mondays at the LLS. I was in Chicago to talk myeloma and darzalex. I go to Philadelphia next month for more myeloma stuff.

What has surprised me is the serious decompression, both physical and mental, that hit me. As I've told people, I think over the last 6 years I was running on adrenalin. Keeping up with my health, kicking ass at work, maintaining relationships and so on. I was so focused on these things that perhaps I lost sight of me and who I am and what I'm about. This is a possibility. So much of myeloma is mental, focused on staying strong and perhaps forgetting about life before myeloma. I'm working to remember. Also with the decompression is the desire to do nothing serious. I want to keep everything light.

I visited my old office for the first time the other day, albeit to pick the order for our fantasy football draft. For the first time, I got the number one pick. It was my job to go home and update the yahoo app with the new draft order. Who forgot to do it? Me. I tried about 45 minutes before the draft but yahoo had cut off any changes. I screwed myself and others with that one. It's not a serious league but I feel bad for forgetting. And this brings me to my next point. I'm starting to think chemobrain is kicking in. Six plus years of non stop chemo might be impacting my synapses. I forget things, am absent minded and am finding if I read something once, with something as simple as a tv show description, that my brain often inserts a word that isn't there. I have to double and triple check. I'm half way wondering if there are brain tests. It wasn't bad visiting the office. Seemed the same. Quieter with me gone. But people in cubes, in front of computers. It was only 5 weeks ago that I was doing that. Not judgment here, just observational.

Yesterday I went to downtown LA to have lunch with a couple of attorney friends I worked with. We went to the Arts District downtown and ate at a restaurant in an old converted warehouse. Super cool. I walked around the area a little bit but it was hot as fuck, so I didn't get too far. I did see some chickens though. I do need to go back with Leslie and get my Mom down here from Berkeley to take her to the area.

In October I turn 56. Yikes. I'm closer to 60 than I am 50. How'd that happen? Considering that making it to 50 was iffy, this is a pretty good accomplishment. How to celebrate, how to celebrate.

Lastly I follow a group called Growing Bolder on facebook. It's inspiring stories about older folks accomplishing cool things. Today I read about a guy who was a long jumper in college. Now as he nears 60 he is in masters track and field and is again long jumping. Very cool. hmmm.

I'll close with some pictures from the past couple of weeks.
Flying home from Chicago to John Wayne Airport

The bean in Chicago. It's even more impressive in person.

Getting ready to talk myeloma and darzalex.

Took a Chicago bike to check out Wrigley Field.

All that's left from a Chicago deep dish Za.

Summer in the LBC with Leslie.

The shoes I ceremoniously left at my desk on my last day. Everyone was afraid to touch them.


FF draft order with me at number 1. Brain fart. 

Gracie kicking it. 

Chickens!!!

Lights with assorted underwears.

Honest Abe and I forgot the old time broadcaster outside WGN Radio in Chicago.





Wednesday, August 30, 2017

Sunday, August 20, 2017

Saturday, August 19, 2017

The long and the short of it

While in college I went over a year without having to wear long pants. All shorts all the time. I'm definitely not a fan of long pants (or ties). Since retiring about 3 weeks ago, I've gone the whole time in shorts. That alone makes retirement worth it. I do still need to add to my Hawaiian shirt collection. There's a place here in Long Beach that is always selling second hand shirts for ten bucks. Leslie and I have been meaning to get some.

This week coming up I am off to Chicago for a couple of days to sit on a panel to talk about the patience experience taking darzalex. Should be fun. The only downside is that it is business casual, meaning I have to break out the work slacks and a long sleeve shirt (also known as a full hands shirt per my buddy Shashank).

Week 3 was pretty nice. Where I did think about work a bit weeks 1 and 2. There was none of that week 3. Of course I was bit occupied. Monday was another MOHS surgery on my forehead. This one was a bit deeper and longer and was pretty darn painful Monday night. Friday was my monthly chemo. 5 hours no problem. Snoozed almost the whole time.

Still pondering what is next for me. I've got time to figure it out.






Sunday, August 13, 2017

Complete Remission

Dr B made the call the other day. No sign of myeloma in my blood or urine. He'd like to do a bone marrow biopsy to confirm. In the past he has poo pooed bone marrow biopsies as not telling us much. When diagnosed I had 80% plasma cells in my bone marrow. It would be interesting to see what it is now. I see Phan this week, so let's see what he has to say.

And what does complete remission really mean? I will keep doing my monthly darzalex and 21 days of pomalyst. No change there. But it means I am doing pretty darn good. It's funny that I hit this point two weeks after retiring. I retired to take care of my health and enjoy life while I feel good. But it did cross my mind that perhaps I could have worked longer. But I was done. All my energy went to work and not towards embracing life. I will say that two weeks of retirement and now the no visible signs of myeloma have led to some mental challenges and self evaluation. It's probably time to see the therapist to discuss.

I do feel great. I went on a short hike today and I am definitely not in the shape I was just a few short months ago. Still need to drop some pounds. Tomorrow I get my forehead stitches out, but I have another spot of my forehead that requires the MOHS procedure*. We'll have that done tomorrow as well.  Friday is chemo. Next week I go to Chicago for a couple of days to sit on a panel discussing the patient experience with darzalex.

* MOHS Procedure


Friday, August 4, 2017

Week One in the Books. Success

One week of retirement down, more to come. Monday was a mental challenge. It hit me that since being diagnosed this is truly my first real down time where I can process what cancer means to me and my life and what happens in the future. For six plus years, I've been hustling and busting my ass to keep things going. Now I can slow it down and check out life. It's an awesome and exciting and interesting and scary time. It could be a mid life crisis combined with a welcome to the world.

Sunday we celebrated at Hamburger Marys, a brunch/drag show here in Long Beach. Monday I spent a few hours at the Leukemia and Lymphoma Society, helping with their First Connection Program, which matches newly diagnosed patients with experienced patients. Tuesday I did my monthly myeloma labs in preparation for two doctor appointments next week; Berenson and my kidney doctor. Wednesday I kicked it at home and squeezed in a couple of naps, then went to a friends to swim and test out a retirement beer mug. We had three Matts in planning at the port and I was M1, which absolutely only represents that I was the first Matt there. Thursday I had another squamous cell carcinoma removed from my forehead. It's a non problematic skin cancer resulting from my lowered immune system and damage done as a youngster. Amazing how much of our younger days come back to haunt us later in life. It hurt like shit overnight, so tonight I rest and take care of some personal business. Oh then there's the bruised hamstring.

And that's the summary.













Saturday, July 29, 2017

All Done

That's it. All done. The counter reached zero. I'm retired. Today I'm working on my social security disability (SSDI) application. That is step 2. Step 1 was retirement. Multiple Myeloma is an automatic qualifier for SSDI. Nonetheless the on line application sure does ask for a lot of information.

My last days at work were good. I wrapped up what I could wrap up. I said goodbye to people, although I worry I missed a few folks. I'm thinking perhaps there is some kind of thank you that I can leave in the lobby of our..check that.. my old building.

Yesterday rummaging through a pile shoes for my last day, I somehow tweaked my left hamstring. The darn thing felt like it snapped and almost took me down to my knees. Feeling a bit better today. Of course, my first thought was that it figures as soon as I retire to maximize feeling good that my body starts to give out. Oddly the day before while sitting at my...old..desk my work id/lanyard broke. Curious timing.

It hit me last night and continues to hit me today that I'm done. Very odd feeling.





Saturday, 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!!!!!!!!






Friday, July 14, 2017

10 working days and it's gotta be Fran Tarkenton

The Vikings played and won their first game ever on September 17, 1961. This is 3 short weeks before I was born, hence the lifelong connection and love of the Vikings. They were led by Fran Tarkenton, one of the all time great quarterbacks.


I'm definitely winding down at work. Deleting files, organizing, transferring information, going to lunch, etc, etc. It's getting very real. It's a strange feeling, but it's the right thing. I can say myeloma-wise and energy-wise, I feel better already knowing that I'm going to be able to focus on health, fitness and enjoying life. I'm becoming a gooey blob, losing muscle mass and barely able to get more than 3 inches off the ground when I try to jump into the air. I've decided one of my retirement goals is to improve my vertical leap. As a youngster and at 5 foot 10 inches I was able to touch the rim on a 10 foot high basketball hoop. A big deal for a non athletic jewish kid. I doubt that can be replicated, but it is humbling when I leap now that I am barely able to create a gap between my feet and the ground.  So I'll strengthen the legs and drop some pounds and see how I much I can improve. I'm guessing the 6 years of dex is playing a role in losing muscle mass and gaining fat mass. Well, the dex and the ice cream.
http://www.mensfitness.com/training/pro-tips/4-tips-increasing-your-vertical-jump








http://www.startribune.com/vikings-rookie-quarterback-fran-tarkenton-got-the-best-of-bears-in-1961/398798671/

Tuesday, July 11, 2017

13!

13 working days.


- 13 is when a Jewish youth becomes an adult. I never had a Bar Mitzvah, which might explain some things.
- Apollo 13
- Dan Marino
- Baker's Dozen
- Wilt Chamberlain