Monday, October 31, 2016

Darzalex Day 4. Vikings vs Bears

day 4. Monday.  Physically doing good. In fact all my body pains are gone.  I got a light workout in and rode the stationary  bike for a while.  Went to work a couple of hours late and left early. Got to ease into it. Totally brain dead though.

Tomorrow work, procrit shot and visit with Dr Phan.

#skol Vikings

Sunday, October 30, 2016

Darzalex Day 3

Home. Very nice. Two days in the hospital is all I can take. When I was first diagnosed, I spent a fair amount time in the hospital. Sometimes for a week or more at a time. That was a killer on my mental state. After a few days, I'd start to wonder if I could rustle up some drugs that would let me just call it quits. This latest stay was actually. I felt fine, it was just a precautionary stay, given the chance of a reaction to the new drug. I stayed somewhere I haven't been before. A smaller place than my normal spot. Nurse were great, you get much more personal attention. That made the stay easy.

Yesterday, no reaction. It really is a one time thing. But I was loaded with various drugs. Demerol, benedryl, dexamethasone, and Ativan. That's a lot.

As I said I got a some really nice messages and calls from my Kilimanjaro family. And that's what they are. We are connected forever. Despite my worries about being able to do the climb, I am more focused on it than ever. I have to do it. I'm going to give my body a rest for a few days, then I'll be back at the training. The nice thing is I have zero body pains. Maybe my body needed the rest. I think I'm a retaining a bit of liquid. I haven't been eating much but I packed on a few pounds in one day, just out of the blue. Weird.

Today is a rest day. Not sure about going to work tomorrow. I'm trying to conserve my time off, so nut sure what to do.

My mental state today is meh, so-so. I think I'm coming down from all the drugs. I'm wondering what next. Ok I have an 8 month program ahead of me. And then? And what about today and tomorrow and the next day? Getting out of site sounds good. No people, no stress. Just Matt time, living quietly and anonymously.

This will pass. Depression can be a side effect of Dara. And I always get the post dex crash. So I got this, just need a day to process it all. Thanks for all the support.

Saturday, October 29, 2016

Home!!!

Just in the nick of time. I had reached my hospital stay limit. Thanks all for words of support.  Day 2 of darzalex is friday.  Should be done in Phan's office since i got the reaction out of the way.

Darzalex 2.75

We've bumped the rate to 110, above what I reacted to yesterday. So I should be going home soon. I've received calls and messages from Kiilimanjaro teammates.  This is very special. I was worrying how this turn of events would effect my ability to go to the mountain. The inspiration from my fellow patients is poweful. So it's on. Kilimanjaro look out!

Also got a note from another Kili teammate. He just fell out of remmision after 2.5 years. He was doing only revlimid. He's switching to carfilzomib and pomalyst...an option we considered.

Darzalex day 2.5

Feeling great. Took a couple of laps around the hospy. The deal with Dara is that typically you get one reaction event and that's it. Yesterday I started at 50ml hour. We bumped up to 100 and had the reaction. Back to 50 and no issues. Today we've been increasing by 5 so I am up to 65. But even at this rate it would take forever to finish this thing. We are now taking incremental 10 ml steps.  Dara is rated at 200 and can even go up 400. Here we go. Let's light this candle! (See The Right Stuff)

Leslie checked in with Berenson and Phan. And we have agreement. 

Note Drazalex's formal name is Daratumameb (Dara).

Darlazex Day 2

Yes, day 2. Gonna be a long one.

This past week, my all over body pain was as bad as it has ever been. In the middle of the night, it was the worse. We recently did a skeletal survey and we ruled out the myeloma impacting the bones. But every bone and every muscle was hurting. And I'm not embilisshing by saying every one. Hands, toes, legs. Well, actually my back is the only that wasn't hurting. Decent sleep hasn't existed.

Phan's feeling is it's the myeloma and toxicity of all the drugs I've been on. Also, I haven't eaten much this week. Not much of an appetite.  Nonetheless, I gained several pounds.  When I checked in yesterday, we noticed I had some edema and swelling. I was feeling bloating. So my brain thought, of fuck my kidneys are failing. That would be game changer for me. Huge game chaanger.BUT, we did blood work at hospy. Creatinine is 3.2. That is a great number for me. On the official efr scale, it's out of failure range.

Yesterday, When we took darlazex on to a higher drip rate, I had a bad reaction. Breathing was impacted, then horrible shivers and rigors. Then all my pains were heightened. Not fun, not fun at all.  In fact a bit scary. A team of nurses got me blankets, rubbed my painful legs, they called Dr Phan. I got more, dex, demeral, more bendryal and we slowed the drip down. Breathing became easier. Shivers stopped and my pains lessened. That was a crazy ten minutes.

At 8 last night, they gave me an ativan.  And I passed the fuck out. Slept like a champ. Didn't wake up once. I can't remember the last time that happened. Sure I was highly medicated but I slept pain free. Just saw the morning nurse. The kicker is we're keeping me on slow drip. I have another 10 hours of infusion. So I'm in the hosiptal for the day. Hopefully I'll get discharged later today. Weekends are tough, hard to find doctors to give discharge notice.  Phan said once drip is done, I can go home. He's not on duty, but is available by phone. So later today, the nurses will call him to get the discharge notice.

 A few notes: thank god for my port. It makes the administration of all drugs super easy. One nurse wanted to also give me an iv as a precaution, In case I needed more drugs to fight a reaction. But we talked her out of it. Arm IV make the hospital stay a differemt animals. Restricts ability to move, gives a dull pain, my veins are hard to find and don't work so good and I would be left with ugly bruises.We convinced (pressured) the nurse to drop the thought of an iv.  It's an important reminder.  You, the patient, are the boss. You can ask questions and say no to stuff. Having your caregiver/advocate helps. When you are in pain or loopy or sleepy, you need that support. Scratch one thing. Just got a roomate. Ok, now I am ready to go home. Fuck

The kicker is I'm here for a while. Guess I'll watch lots of college football today.  I'm super hungry. I feel good. I'm in the oncology unit, so the nurses are extra friendlly.  teamgoldman lives to fight another day.

Friday, October 28, 2016

Side effects of darzalex

First hour of darzalex went off with no hitch. Then we increased drip rate and then i had a reaction. First breathing issues, then shivers and a painful back. We stopped and then restarted darzalex at slower rate. Plus a demeral iv that took care of shakes/rigors and pain. Now back to the drip with more benadryl.  Tired and loopy.

And...here it is.

Darzalex


Day 1, Cycle 1 Darzalex

So the interesting thing with darzalex if that for the first infusion, 50% of patients have an allergic reaction, sometimes impacting the respiratory system. Ergo, you do your first treatment in a hospital. Yuck. But i'm checked into Los Alamitos Medical Center, waiting on my drugs. It's going to be a long, slow drip.  Fingers crossed I don't have to spend the night.


Tuesday, October 25, 2016

Refractory

Recall when I was diagnosed, I was experiencing fatigue, fevers, night sweats and severe anemia.  It took a few months of being sick to get me diagnosed. Once diagnosed, we went though three chemo regimens that did nothing for me. My kidneys were on the verge of complete and total failure.  At this point Berenson started me on Treanda (Bendamustine), which at the time wasn't really being used on myeloma. But it worked and it got my numbers down to a good spot.  Then I was on maintenance for about 10 months. That was velcade, revlimid and dex.


After 10 months, my numbers starting going up, so we went back to treanda. Note that normally the myeloma morphs and becomes unfazed by whatever drug a patient is on that had previously worked. But on my first interaction with Treanda, we didn't exhaust its effectiveness. The second time however we did exhaust the usefulness of the drug. But it got my myeloma back down to a good spot. Again we switched to a maintenance regimen. This time, the usefulness of the maintenance mix lasted 2 years. That's pretty darn good.


Over the past few months, I've been getting fatigued with a lot of muscle and bone pain. We did a full body scan and my bones look good. My kidneys remain pretty darn good, considering where they were. My numbers? Well they have slowing been inching up. But the most recent month they took a significant jump and I've been feeling crappier.


There are two terms that myeloma patients are familiar with: relapse and refractory. Relapse is when a patient has been doing no treatment and the cancer gets reignited. Refractory is when a patient is doing treatment and the drugs stop working and the cancer gets aggressive. These two terms are what makes myeloma incurable. Relapse or refractory is inevitable. It's just a matter of when. And then it's a matter of  there being other drugs that are effective.


So I am now refractory.  It's time to change my mix. I'll be doing darzalex and pomalyst, both myeloma drugs that weren't around when I was diagnosed. Darzalex is infused and pomalyst is a pill. Taken together and with dexamethasone, every one's least favorite steroid, the regimen is pretty effective. I start Friday.


I've had the same routine for two years. It was totally doable and I knew what to expect. I knew I'd change at some point. That point is now.  Feeling like crap has made Kilimanjaro training a challenge. And now this new regimen makes it more of a challenge. Right now I'm operating at one week at a time. Can't really think beyond this Friday and this weekend.


Time for tiger blood, beast mode and visualization.

Thursday, October 20, 2016

Kilimanjaro Team

Here's a link to a page with short bios on the Kilimanjaro team.




http://www.movingmountainsformultiplemyeloma.com/kilimanjaro17/team




And here's a link to my fundraising page. Any amount helps us get closer to a cure.




http://support.themmrf.org/goto/mattgoldman

Tuesday, October 18, 2016

Sammy

Our pets are very important to us as we live with and fight myeloma.  Gracie has been amazing over these past few years. She can read my mood and my energy and motivate me to get moving or slow things down to accommodate me.   Sammy is a myeloma friend's dog.  Sammy was only 3 and had his own cancer. He passed away a few days ago.  Let's all take a moment to acknowledge Sammy as well as our own four legged support. While we're at it, let's also send positive thoughts to Richard who is living with myeloma and experienced this heart breaking loss.



Monday, October 17, 2016

Hemoglobin

I'm typically low on blood. It's a side effect of my treatment, but also a result of the myeloma. In rough terms, the myeloma crowds the bone marrow and inhibits the body's ability to make red and white blood cells. Hence anemia and lowered immune system.  I get weekly Procrit shots that help my blood making. Typically, 3 or 4 weeks in a row of Procrit gets me up to near normal. Near normal then lasts a month or so. Then we repeat. Lately though, Procrit shots aren't getting blood counts up. Perhaps the shots are preventing my levels from dropping even lower. All I know I am now consistently low on blood, meaning I'm tired, irritable and mentally not sharp. It makes focusing a real effort and thereby makes working a regular job difficult. I can't focus and I don't care.  Not a good match for being productive.


Friday is Berenson. I may push for a regimen change. I'm stable, but numbers are inching up. Of course the goal is to keep whatever is working. going for as long as possible. But I'm not sure stable is cutting it for me. I want improvement. I'd like to feel like I did about a year ago, when my numbers were superb. Phan is ready to change. We'll see what Dr B says.



Thursday, October 13, 2016

Birthday with the Goats

For my 55th we went to the Gentle Barn, a farm animal sanctuary. It's a great place doing great work. Hanging with the goats is our happy place.





Momentum Magazine

This is a bit blurry, but it's an article from 2013. Momentum Magazine did an article on me and the importance of getting on my bike to help recover from the challenges of myeloma. I haven't been on my bike in a long time, but I did go on a short ride with my nephew Dillon in Tahoe last month and it's been on my mind that I need get riding again. It's relaxing, freeing and healthy.



Wednesday, October 12, 2016

21 Pilots cover of the song Cancer (originally done by Chemical Romance)

21 Pilots is one of my favorite bands right about now. They performed on Saturday Night Live the other day (Oct 8). And I just discovered a song called Cancer. It's their cover of the original which was done by the band Chemical Romance.  Warning it might make you tear up a little bit, but that's ok. It's a good thing.



Monday, October 10, 2016

55, 5-0

Yesterday I turned 55 and the Vikings won to go to 5-0.  Leslie and I went to the Gentle Barn, a farm animal sanctuary located about an hour from our house.  Great day.





Saturday, October 8, 2016

Lizzy Smith

 I mentioned the other day that a myeloma advocate had passed away. I knew of Lizzy Smith, but didn't know her. Here's a nice tribute to Lizzy from the Myeloma Crowd, for which Lizzy wrote many articles. Also here are some thoughts from Lizzy about living life.

A Tribute to Lizzy Smith

And that’s why I’ve learned to live. Live BIG and GRAND as often as I can. As often as my health and treatments allow, and responsibilities to children, self, family and loved ones. I travel like crazy and have discovered locales that bring me great joy. I go hang gliding. I ski. I do things that are outside of my comfort zone. When I feel angry, sad and depressed, I hit up the salon, go for a walk, or play with my friend Katherine’s dog. Anything to get out of that zone and into a different one. I plan to go skydiving soon. Wear your favorite shoes, use your pricey perfume and favorite dishes daily, and break out the handbag you paid way too much for and have been hesitant to use in case you ruin it. Who cares? It’s doing no good in the closet. Go hang out with your friends and laugh. Pity parties are allowed, but letting them go for too long accomplishes absolutely nothing and can be extremely dangerous to our fight to get well, recover, and gain our emotional, spiritual and physical health back.

Thursday, October 6, 2016

Feeling Better

Mental is physical and physical is mental. Myeloma is both. The aches and pains had me mentally worn out. Today I woke up without any aches and pains and therefore in a better mental state. Of course, that doesn't change my plans one iota.  But I am feeling better which is nice. I got a work out in this morning. Then my skeletal survey. Perhaps 10 x rays, toes to head. Should get results next week.

Wednesday, October 5, 2016

Vikings 4-0

The great news is the Vikings are 4-0 and sources tell me they are looking like super bowl contenders. They are the Vikings so anything can happen. But so far the season is fantastic. Their defense is huge. I got scared the other day, thinking what if they did make the super bowl and I was off in Africa. Kilimanjaro and the super bowl are both in February. But I checked schedules and I'm good. No overlap. Perhaps I am jinxing things by getting so fired up. But eff that, I'm fired up and nothing can change it.


On the myeloma front, it's interesting times. The good news is that my time at work is winding down. Of course, work doesn't know about this and won't know about it, unless they read this blog, which I seriously doubt. A broad window for retiring is between now and April 2017. More specifically I am aiming for putting in a retirement notice when I get back from Kilimanjaro. This makes me happy. My contingency plan is that I might decide to retire any day, depending on how I feel.


Lately I've felt like crap and I've mentally checked out of work. Everything I do is aimed at wrapping things up and being able to hand them over. But it's all seeming meaningless right about now. And I'm running on fumes, so the energy for 40 hour weeks is slowly dissipating.


The myeloma? Well my kidneys, which are the primary measure of how I'm doing, are doing fantastic. They're better than they've been since I was diagnosed.  Other numbers like light chains and protein in my urine are inching up. I think if it were up to Dr Phan, we'd switch up my chemo regimen. Berenson isn't ready to make the shift. The goal/mission is to get every last benefit out of my maintenance protocol. Things aren't changing rapidly enough to warrant change.


But I'm tired. My weekly Procrit shots aren't really doing a good job of getting my blood counts up. So I'm running on 2/3 normal blood counts.  Everything aches. Phan is running various tests to see what's up. Berenson says arthritis. Phan says neuropathy. Both don't think it's bone damage caused by the myeloma. My feeling it is both arthritis and neuropathy. Some test results have come in and I'm definitely showing significant inflammation. Tomorrow is a skeletal survey, basically full body x rays, and this ought to enlighten us a bit more.


I'm coming up with my own plan of attack, because history shows the doctors will be vague about what I can do about this.  So I need to lighten up, the plan is to drop 15 pounds. This ought to relieve stress on the joints. I'm also reducing my carb and sugars intake. Both are inflammatory foods. I need to eat a non-inflammatory diet. And I need to keep exercising to keep the bones and muscles strong.


I've been on cruise control for a couple of years. Now, at 5 years and 5 months it seems that either the myeloma is changing or the non stop chemo is taking it's toll on me. We'll know what is what over the next couple of weeks.


I'm sure I've said this before; I've accepted my ultimate fate with this here myeloma. An advocate passed away this week from pneumonia. She was doing great a month ago. It's sad news. And that's the mystery of myeloma, you just never know when your immune system will quit and some virus or infection brings you down.  I'm not ready to go But I do have an exit strategy in mind. I'm not ready to execute it. But absolutely this is a large reason why I am excited to stop working. I need to get on with living and enjoying life. A desk does not fit into this goal.


Also, I hesitated to write this post. I know it worries some folks, particularly family members.  But remember, I partly view this blog as an avenue to share my experience with other patients and as a way for me to vent. Writing can be cathartic. So it might seem harsh and scary, but it's all ok. I'm still captaining this ship.

Sunday, October 2, 2016

5 5 5 5

It's October 2. 5 years and 5 months since my myeloma diagnosis.  In a week I'll be 55.  Over the past month, it seems like how my myeloma manifests itself has changed.  Light chains and protein are inching up. Not good.  But kidney function is approving remarkably.  That's a great thing. What's it mean?  I have never had bone involvement.  But for the  past few months I've been getting increased levels of bone pains. Berenson says it's arthritis and not myeloma.  Phan say it's neuropathy. In the next few days I'll do a bone scan to see what's up with the bones.  But I can say that this pain has the potential to be a game changer.  It impacts my ability to work out and train for Kilimanjaro.  It impacts my mind set. I can deal with fatigue and can handle it. But pain, I'm gonna have to ponder that.  Yesterday I saw friends that I don't see often.  I was crashing from chemo and hurting across the body.  I had to bow out of the fun, so I could get home and sleep. For the first time in a while I'm really hating this new normal that myeloma has created. It's bullshit. I definitely need to work through this challenge.

Tom Brokaw's Myeloma Journey

Here's something Tom Brokaw wrote for the New York Time this weekend, titled: Learning to live with cancer.

http://www.nytimes.com/2016/10/02/opinion/sunday/tom-brokaw-learning-to-live-with-cancer.html?mwrsm=Email&_r=0