Saturday, December 31, 2016

Potrait of a Friendship in the Face of Cancer

Sad and beautiful essay from the New Yorker Magazine. Story and photos of a photographer's documentation of his friend's fight with colon cancer.

http://www.newyorker.com/culture/photo-booth/portrait-of-a-friendship-in-the-face-of-cancer

Making the Shift

Brief update. Saw Berenson and the kidney doctor the other day. Kidney doctor is happy My creatinine is in mid 2s, best it's been. Potassium and phosphorus looks good, meaning I can still have flexibility in my diet. We reduced one of kidney drugs. And in terms of Kilimanjaro, kidney doc gave me a final thumbs up.

Berenson also very happy. Continued improvement on my myeloma numbers. I can switch from doing darzalex every Friday to now every other Friday. That's huge.  I've been massively tired since starting this regimen. We're going to adjust my pomalyst again to try to minimize the tired. I started at 3 mg per day. Cut it to 2 mg per day. Now this cycle, we've reduced it to 1 mg of pomalyst per day. Fingers crossed it helps.  Berenson also gave a big thumbs up to Kilimanjaro. So despite my concerns about being in good enough shape, it's on. Roughly 6 weeks to go.

Have a happy and safe and healthy new year everyone!!!!

Friday, December 16, 2016

Let It Fly

I'm just two months from Kilimanjaro. Now that I've switched treatment, I'm feeling better and more energetic. So I gotta get super serious about training. I've added 25 pounds of kettle balls to my pack and I'm wearing it when I walk Gracie to get used to the weight and feel of the pack.


Thursday, December 15, 2016

Institute for Myeloma and Bone Cancer Research

As you may or may not know, Dr Berenson, in addition to his dedicated practice, has a non-profit research group, the Institute for Myeloma and Bone Cancer Research. They're doing some exciting work. Below is a year end summary of their accomplishments and goals.


Dear Friend:
 
We wanted to give you an update on the extremely important and successful work that the Institute for Myeloma & Bone Cancer Research (IMBCR) has undertaken during the past six months as we continue our groundbreaking research into finding a cure for multiple myeloma and other bone cancers.
 
IMBCR remains the only independent non-profit cancer research institute working to find improved treatment, and ultimately a cure, for multiple myeloma, a cancer of blood cells that reside in the bone marrow.  While the focus of the research is multiple myeloma, many therapies discovered in our research laboratory can apply to the treatment of other cancers, particularly cancers that spread to the bone such as prostate, breast and lung cancer.  
 
Because of our research, we have continued to develop new treatment regimens that have benefitted patients with multiple myeloma and other blood cancers.   To continue our research, we need additional funds and we now ask for your financial support.
 
IMBCR continues to be involved in very exciting work.  We have identified new treatments for myeloma, identified new ways to follow the disease, and completed research that has led to a better understanding of the biology of myeloma.
 
First, we have made much progress on our new protein marker called B-cell maturation antigen (BCMA), initially found in the blood (serum) of myeloma patients. With this simple blood test, we can predict a patient's likely response to treatment, time until they might relapse, and their long-term outcome with the disease. It also provides a much more rapid way to determine whether a patient is responding to their treatment than currently available tests, which will allow doctors to make much quicker changes to a patient's treatment. This will both spare a patient from experiencing potential side-effects and shorten the time a patient would stay on an ineffective regimen. It also should offer the possibility that patients can start out with less toxic treatment and only add in medications or change the treatment early enough so that the ineffective less toxic treatment will not sacrifice the patient's outcome. For myeloma patients whose serum does not have the conventional blood markers, we have shown that serum BCMA levels can be used to monitor them rather than the invasive bone marrow exams and PET scans that are required to follow their disease presently.
 
Second, we have now established that serum BCMA can be used to track and predict outcomes for patients with other related cancers including Waldenstrom's macroglobulinemia and chronic lymphocytic leukemia.  Patients with the latter disease do not currently have any serum marker to chart the course of their disease.
 
Third, we have also established that serum BCMA levels are extremely low in patients with immune deficiencies and associated with disease-related complications in these patients. This likely represents the first blood test to both diagnose and predict clinical problems in patients with primary immune deficiencies.
 
Fourth, we have now shown that low levels of BCMA predict poor outcomes for patients with breast cancer and expect that this is likely to be the case in many other types of cancer that we are now testing.
 
Fifth, a hallmark of myeloma is the associated immune deficiency which often leads to infection and a lack of a patient's ability to fight off the myeloma effectively. Until now, what caused this problem for myeloma patients was poorly understood. We have now discovered that this same protein, BCMA, when present at high levels in the serum as it is in myeloma patients, causes the occurrence of the immune defects that occur in these patients. This groundbreaking research was just published in a top cancer journal, Clinical Cancer Research. We are now working on ways to prevent this from occurring so that myeloma patients can have functional immune systems which will allow them to fend off infections and fight their myeloma more effectively. Our early results with an inhibitor of the enzyme that leads to the shedding of BCMA show that we can prevent it from being released off of the myeloma cells. This is likely to pave the way for a multitude of studies to use this approach to reverse the immune deficiency as well as make BCMA-targeted approaches to treat myeloma more effective. 
 
Sixth, we have recently identified a new serum protein that is elevated in myeloma patients especially those with poor outcomes and believe that levels of this protein may predict responsiveness to specific anti-myeloma treatments. We are currently doing further testing on this new serum marker in our laboratory.
 
Seventh, we are also carrying out further work on a drug called Jakafi. It is currently used to treat a bone marrow condition in which patients make too many blood cells. We have shown that this drug increases the effectiveness of a variety of other drugs that are currently used to treat myeloma including Revlimid and steroids.  As a result of our promising preclinical work, clinical trials are starting now with this combination. Moreover, a newer version of Jakafi is in early development and we have shown that this new drug has major activity against myeloma, especially when combined with other anti-myeloma drugs.  These studies have led to clinical trials that are now evaluating the most promising combinations based on IMBCR's results.
 
Eighth, we have furthered our work on the pathway that we recently uncovered through which Jakafi can help boost the immune response to the patient's myeloma.  Specifically, a kind of white blood cell called a macrophage, which is a 'scavenger' cell, can exist in two forms -- one which increases tumor growth and the other which slows the growth of the myeloma. We have shown that Jakafi markedly reduces the number of macrophages that make the tumor grow, while increasing the types of these cells that eliminate the myeloma.  We have also uncovered the specific pathways in the macrophage that produce this effect.
 
Ninth, we are also working on specific genetic signatures that identify resistance and sensitivity to a variety of currently used drugs for treating myeloma patients. We have now identified specific ones associated with sensitivity and resistance to a number of anti-myeloma drugs which will help make more effective treatment planning decisions for individual patients.
 
Tenth, we have been working on a new, exciting approach to treat myeloma that will only eliminate the tumor cells without having any side effects. This is a treatment that will target the genetic material that is only present in the tumor cells allowing tumor specific killing without any side effects.
 
We are all very excited about the new discoveries that we have made to make the lives of patients with myeloma better. The advancements during this year at IMBCR would not have happened without your generous support.
 
We count on our many donors and financial supporters to continue with their remarkable efforts in funding our research and we have enclosed both a Pledge Card and a reply envelope for your use.  
 
If it is more convenient, you can make a secure online credit card donation by visiting our website: www.imbcr.org.  Please click on the "Donate Now" button. 
 
You can also make a credit card donation by telephoning our main office number: (310) 623-1210.
 
In advance, we thank you for your donation and, if you have any questions or comments, please do not hesitate to contact either of us at the above telephone number. 
 
With thanks and best wishes for the New Year,
 
 
                   
James R. Berenson, M.D.                                             Geoffrey M. Gee, Esq.
President, Medical and Scientific Director                       Executive Director                 
*The above information is not intended to be used or construed as a substitute for professional medical care and advice provided by a physician. People who take the information and make decisions regarding their health or medical care, which they believe are based on ideas contained in this article, do so at their own risk. The IMBCR is not responsible for any adverse effects or consequences resulting from the use of any of the suggestions or information contained in the article but offers this material as information which IMBCR believes readers have the right to hear and utilize at their own discretion.

Wednesday, December 14, 2016

Tuesday, December 13, 2016

Darzalex aka Daratumumab

Interesting article that's not too technical about Darzalex, my current therapy. I take it with pomalyst and dexamethasone.


https://www.cancer.gov/news-events/cancer-currents-blog/2016/daratumumab-fda-myeloma-new

Saturday, December 10, 2016

Saturday, December 3, 2016

Moving Mountains for Multiple Myeloma

We're just over two months away from Kilimanjaro. The excitement is building. Can you feel it? The MMRF has started promoting the climb and the climbers. The below link will take you to a page with climber's blogs. You can read my blog here and you can learn more about the folks I'll be spending nearly two weeks with. It's a great group.

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

Also, you still have time to donate. By goal is $12,000 and I've recently crossed to 10,000 mark.

Here's the link to get to my donation page.

Matt's Kilimanjaro Donation Page

Thursday, December 1, 2016

Bag o Iron

My blood counts are going up with the new regimen, but I'm also low on iron. Last week and this week I've had to get a 30 minute iron infusion. It looks like this:



Sunday, November 20, 2016

Back to Kilimanjaro Training

Just wrapped up my first cycle of darzalex. Lab results were fantastic. Almost unbelievable how much improvement there is after one cycle.  But we'll take it. I can say I am definitely feeling better. Still having the crash today, two days after chemo. But yesterday I felt well enough to go on a short hike. Kilimanjaro is just 3 months away. Short work week coming up. Berenson Wednesday.  Chemo Friday. It'll be in the hospital since Phan's office is closed.  Should be smooth and easy. We've got it down to about five hours. It is the hospital so let's add a couple of hours.


Thursday, November 17, 2016

11.0 and 2.52

Dayum!!!  That creatinine is dropping like crazy. Good news. Thanks Darzalex. And blood counts going up, meaning increased energy. Tomorrow is day 22 of cycle 1. Might try and get a hike in on Saturday, gotta get back to Kilimanjaro training.

Friday, November 11, 2016

Latest labs

The doctors say that darzalex goes to work quickly because it targets the cancer cells. I'm no oncologist but I do know that finally my blood counts are going up and creatinine is dropping. Hemoglobin is 10.8 which means no procrit shot for first time in a couple of months. Creatinine is 2.82, meaning my kidneys are definitely out of failure territory. So I'd say something is going on.

Tuesday, November 8, 2016

hashtag of the day #fuckthisshit

Feeling ok physically after a couple of rounds of darzalex. But I'm in a horrible mood and really not happy with work and all that goes with it. It has absolutely zero value to me (other than a paycheck). My time working could end sooner than anticipated. And that's my update. Day 15 this Friday.

Friday, November 4, 2016

Done and Done

Problem free day with darzalex. Took about 6 hours. Next time it should take 4. The beauty of it all is I'll have insomnia tonight from the dex but that's ok because tomorrow is Saturday and don't have work or anything. I'm gonna stay up all night. Where's the black jack table?

2.79

Lowest creatinine since being diagnosed. 2.79. Yay kidneys!

Darzalez 8.5

Met someone at Phan's office who has been on darzalex for 10 months. Working like a charm.

Here's me, half way through the bag, with my favorite nurse.


Darzalex day 8

#SkolVikings #myeloma #MM4MM

Training hard for Kilimanjaro


Thursday, November 3, 2016

Darzalex Day 7, 5 and 1/2 years

A chemo cycle is 28 days. For the first two months of this new regimen, I'll be doing chemo every Friday, on days 1, 8, 15 and 22. Then start again. Tomorrow is day 8 of the cycle, but it'll be my second time getting darzalex. We'll do it in Phan's office which is way better than the hospital. Another reaction is unlikely.


Today is day 7 of the cycle. I'm a bit achy again. Moved around a lot during the night, one room to another trying to find just the right, pain free spot to sleep. Poor Gracie follows me around, waiting for me to get settled. I'm sure she's happy to get a nap in when I leave to work.


Also of note, yesterday was November 2. That makes 5 and 1/2 since original diagnosis. 66 months.  Finally my brain is working again after the 27 hour infusion of last weekend.



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

Tuesday, September 27, 2016

Arthritis, neuropathy or what

My doctors are great. I have an amzing team. Berenson comes up with the chemo regimen that keeps me going. Phan is my go to hemotologist for having longer conversations about what I've got going on. They don't ever talk to each other. Berenson is keeping me on the same maintenance I've been doing for two years. He doesn't discuss change. Phan on the other hand has been prepping me for a change. It's inevitable, really.  And with some of my recent lab results changes, a new regimen may be closer than it once was. That's fine.  But we want to squeeze every last successful bit of the current treatment. In fact over the past two months my kidneys have been better than ever. Which is why Dr B says there is no need to even talk change. 

I've been fortunate. I haven't had neuropathy issues in the five plus years since diagnosis. With treanda (bendamustine) I did experience minor neuropathy. I simply had a loss of sensation in my fingers. No pain and feeling came back as soon as I stopped the drug.

Over the past few months I been getting more aches and pains in my joints and legs and hands.  It hasn't been bad and I chalked it up to age, Kilimanjaro training, and a side effect from dex. Lately though the pain has intesified, usually at night and when I wake up.  I mentioned this to Berenson last week and he quickly chalked it up to arthritis, and not at all related to the myeloma.  Today I saw Phan and I talked more about the aches. He ruled out arthritis immediately and said it is obviously is neuropathy. He said I am too young to have arthritis all over my body.

I thought neuropathy was mostly tingling, numbness and pain in hands and feet. "Nope" says Phan. Can also be joint and muscle pain caused by nerve damage.  I have been getting velcade through my port.  It's typically now given sub q...a shot in the belly.  The sub q is supposed to lessen the velcade induced neuropathy. Up until today I have passed on sub q. The infusion has been working fine.  But today we switched to sub q, assuming my pain is neuropathy.  We shall see.

I also have the mystery bruise and soreness in my right arm.  Both docs say my bones are fine and not to worry.  Phan today suggested we do a bone survey to be sure they're good. It's been well over a year since the most recent survey.  Phan also said we'd do some kind of liver enzyme test to determine if my muscles are breaking down. I know Pat K would discuss how dex impacted muscles.

We'll do the tests, continue with sub q velcade, throw yoga into the mix and keep working to take control of the aches.

Monday, September 26, 2016

Mystery bruise

Low platelets, blood thinners and being a klutz leads to bruising. Most aren't that bad and most I have no idea how I got.  This one?  Don't know what happened. But kind of nasty looking. Wtf


And on it goes..

Saw Berenson Friday. He's happy. My kidney function is improving every month. That's a great thing. My myeloma numbers are not as good as they were several months ago, but not to worry says the doctor. Maintenance continues. Tuesday is day 1 of a new cycle. Velcade, dex, revlimid.


I'm still training for Kilimanjaro. I can unequivocally state that it is the hardest thing I have ever trained for. It's not the mountain's fault. It's my body. There's the myeloma, anemia, fatigue and sore joints. I asked Dr B about my achy joints. I haven't had any bone issues from myeloma. He's thinking it could be arthritis that's impacting me. From the bottom moving up...feet, ankles, knees,, hips, hands, elbows and shoulder all ache, almost daily. If you remember the movie North Dallas Forty, Nick Nolte was a an aging football player who struggled with pain every day getting out of pain. That is me. It makes training super difficult. But I'm up for the challenge. No turning back now. Also note that I'm at $9,500 in fund raising. It's not too late to give! Any amount helps.


I will be following up with other doctors, including Phan, on what is up with the aches and pains. Popping pain pills is hopefully not in my future.


I've said it before, myeloma has fast forwarded me into being an 80 year old man. I grunt. I struggle getting in and out of cars that sit too low. I need frequent bathroom breaks. My memory sucks.


But!!  I'll be 55 soon and I'm feeling pretty darn good.



Tuesday, September 20, 2016

I Won't Apologize for Having Fun While Chronically Ill

As I prepare to wind down on my career so I can enjoy life and take care of my health the way I should be, I find this story to be quite appropriate and accurate.

https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/

Saturday, September 3, 2016

3.01

3.01 is my latest creatinine number. It's a measure of kidney health and function. The lower the number the better the kidneys are, meaning the myeloma is under control. 3.01 is easily the lowest my creatinine has been since I was diagnosed. This trounces the previous best by 8%. So the myeloma is calm. My stress over recent changes could be pointless.  Good news and a reminder to stay calm and listen to Berenson.  

Wednesday, August 31, 2016

Teddy Bridgewater, Neuropathy, and What's Next

I'm wrapping up a Tuesday. Days and weeks and months fly by. I don't like it at all. Nor do I like green eggs and ham. I started my latest cycle of maintenance today. Revlimid, velcade, dex and medrol. Dr Berenson's mix. For some folks, my regimen is their treatment. But for me, it is maintenance. We're not looking at this mix to bring the myeloma down. Rather, we're using the mix to either keep it stable or slow the progression. For the past two years, it has done a superb job of keeping things stable. This is longer than we expected.  Since perhaps April of this year, my numbers have been creeping up. We look at protein in urine, paraprotein (the nasty myeloma created protein) in urine, kappa light chains and creatinine. I do not have a m spike, a common myeloma marker. So these four listed metrics give us a sense of what the myeloma is doing. Oh, and of course, we go by how I feel.

The numbers aren't skyrocketing, but they are inching up. My maintenance is no longer doing exactly what it aims to do. But don't get me wrong, it's working but not as efficiently as before. And that's how it is with myeloma. It eventually becomes refactory, basically meaning the myeloma morphs and becomes immune to whatever drug you might be taking, Very common for this to happen in myeloma. This is the incurable part of it. Us myeloma patients are fortunate that in the past 3 years or so, we've had several new drugs in the chamber ready to blast the myeloma. I haven't used any of these new drugs. Doctors Phan and Berenson have been reminding me of this fact in recent visits. In my mind, they are preparing me for a change. And if I am being frank, at my past 2-3 visits with Berenson I was absolutely expecting him to say it's time to change. But he hasn't said it yet. He's happy with how I'm doing. He's the expert. My kidney function (creatinine) is decent, meaning the myeloma is under control. I  feel ok, even climbing 10,000 foot Mt Baldy two weeks ago and 14,000 Mt Bierstadt in Colorado two months ago. Sure they totally kicked my ass, but I conquered them. This month, my proteins went down (good) while light chains went up (not good). Kind of a mixed bag. If you ask me, the regimen change is coming. But we want to sap every ounce of benefit (with time included as a benefit) from my maintenance as possible.

It's kind of an odd position. I know change is coming. Lots of questions though. When is it happening? Next month, next year, who knows. What drug will I do and what does that treatment schedule look like? Berenson has mentioned Daratumamab (more easily known as Darzalex) as the next drug. But Leslie recently asked the doc if we should have a forward looking plan. Not yet said the doctor. I guess we cross that bridge when we get to it.

Since my diagnosis five years ago, I've gotten decent at recognizing changes in my body and how/what I feel. There are a few changes that have popped up in 2016. Let's start from top:
- I've never had neuropathy, which can be painful and quality of life impacting. I take 600 mg daily of Alpha Lipoic Acid which is supposed to help. It has helped. But of late, I've noticed my hands very easily get numb. Not painful, but a tingling, I can't feel my hands kind of numb. It happens when my hands are not aimed perfectly straight from my wrists. Any angle or pressure on the hands creates the numbness. It goes away after a while, but it's becoming more pronounced. Dr Phan today suggested switching my velcade from infusion to sub q in the belly. This is supposed to help with neuropathy. We don't want the nerve damage that leads to neuropathy to become permanent. Today I stuck with infusion, but in two weeks, on day 15, I'll likely switch to the sub q and see if that helps.
-If I don't sleep in a perfect straight line, I now get various body pains. Curled up, legs bent will lead to pain. I can walk and shake it off, but it takes a few minute. I have the total old man walk. In fact, even if I sit at my desk at work or sit in a car for too long, when I stand I have aches. My legs get the brunt of pain. Ankles, feet, knees and hips. My bones are fine, we know this, It's the joints and muscles. When I think about camping out on Kilimanjaro and sitting on a plane for 19 hours, I already know that I'm going to have pain. Hello tylenol,
-For a while now, I've had fluctuating hemoglobin counts. Typically, when I'd get low, I get a procrit shot 2 or 3 weeks in a row and the counts would bounce up to near normal, with normalcy lasting 2 or 3 months. My counts don't bounce up as much any more. Procrit is becoming more of a regular weekly thing. It's administered by shot in the belly. I have not needed a transfusion in years, so the procrit is keeping me at least close to normal. Also note that I take a blood pressure medicine, not for blood pressure but to help with blood flow in the damaged kidneys and mending scar tissue. This leaves me with low blood pressure and when combined with low blood counts, I am prone to dizziness if I stand  up too quickly. I haven't passed out yet. At elevation though, this certainly adds to the challenge. Climbing mountains equals elevation. Our guides and doctor on team will watch me and the other patients very closely. We're taking our time getting up the mountain to help with altitude aclimation.
-Also with the low blood count, I get generally tired more quickly. Naps on my days off are the norm.  When I first started feeling sick, pre-diagnosis, I could fall sleep anywhere at any time. Even standing, leaning against a wall. I'm not there now, but I can crank out an hour nap pretty easily. Work at times can be more of a drag, what with the tired and all. When my myeloma numbers were at their best, I'd have a yucky chemo week followed by a week of feeling great. Nowadays, I have yucky chemo week followed by a week of feeling meh, so-so. This is frustrating and adds to the mental/emotional challenge. A tired body leads to tired mind, leads to a feeling of being over it.

Don't get me wrong. I'm doing good. I'm semi-lasered focused on Kilimanjaro. Very very excited for this. I'm ready now and will be ready in a few months.

If you know me, it's clear that I am lifelong almost obsessed Minnesota Vikings fan. It's been a bit of a tortured 54 years for me and the team. 1969, 1975, 1987, 1989, 2009, 2015. All were years with great hope and potential, and gut punching endings. We're close to the start of the 2016 season. The Vikings have been looking great. Expectations are high. Talk is they are super bowl contenders, and it hasn't just been me talking. Real people have been saying this. This past weekend I ordered my 2016 Vikings cap. I changed my work lanyard to the Vikings edition. I've been flapping my guns about how this is the year. Today I was wrapping things up at work getting ready to go to chemo when word (texts) came that Teddy Bridgewater, the team leader, quarterback and all around great guy, blew his knee out and will miss the entire season. Vikings fans and players and commentators on social media have been expressing heartbreak and concern. My expectations have been deflated.

Myeloma is a mental challenge, more so mental than physical at times. I keep myself positive by focusing on other things; Kilimanjaro, my upcoming road trip with Leslie and Gracie, the Vikings, my 55th birthday which is around the corner and anticipated Vegas trip, my brother is coming out in November for his birthday and sports spectating. This Vikings setback chips in to my focus. Might sound silly. A football team that I have no control over. But they're a diversion. I've been following them since the day I was born, which was two weeks after the very first game in franchise history. Kilmanjaro is another positive and another diversion and a chance to show myself I'm not done yet, while also raising money to help find a cure for myeloma. I've conquered a couple of peaks in my training. I am absolutely confident that I'll reach the summit. There are 6 patients on the Kili team, so our guides gear the climb for us to succeed. But, I know it'll be no easy feat. I'm slow, I hurt and I'm low on blood Yes, I'm doing it, but I am constantly reminded that I am no longer a spring chicken. I used to crank up hills and climbs. Now, not so much.

Tonight is an insomnia night from my dex. But I sure as hell am getting up and at em early tomorrow to go to gym. Lift some weights to keep my bones strong. Do some stairmaster to help my cardio and leg strength. I'm sticking to my program. Then I go to work. Not as enthusiastically as I could be, but I'll be there. Next week va-freaking-cation.

I really am pondering various What's Next questions. When do I switch drugs? When do I decide that I'm not spending any more time or energy at work? When do I downsize and simplify so I solely focus on my health and on leading a high quality life. Right now, it's a bit a drudge and routine, with time obnoxiously flying by. I've got February 2017 (Kilimanjaro) circled in my brain as the date for "what next" becoming "here we go, let's do it"

I know I haven't written a long, perhaps overly personal post in a while. I haven't been sharing or in a chatting about myeloma mood. Seems pointless in some respects. Other patients get this and experience this and understand. There is nothing to report, but that doesn't mean nothing is going on. Hard to explain and describe. The patient community is strong and important. We support and empathize with each other. It can be spoken or can be simply known. A head nod or "what up" between two patients means a lot. Five plus years folks. I try to give back to the myeloma and cancer community. I try to keep myself positive and in beast mode. I try to look forward and not backwards and not beat myself up over the various paths I have chosen over the years. Here I am, like it or not. I am constantly working on my self confidence and acceptance and ability to power forward and improve. I'm getting better at giving myself pep talks. Throwing all this out there in this post is a bit cathartic and a bit of a motivational exercise for myself. But definitely don't worry folks, I'm good.

Monday, August 15, 2016

THE JOURNEY TOWARDS A CURE

I'm always amazed by people's sacrifices and unselfishness when it comes to do things for a good cause. Eric Gelber is one such person. He takes on some crazy challenges to raise funds for the MMRF. He has raised hundreds of thousands for the MMRF over the years. From Sept 16 to the 18th, he will be running 200 miles in Central Park in NY with the goal of raising $250,000.  Here's a short video of Eric discussing his journey and why he does what he does.


https://www.themmrf.org/thejourney/

Mt Baldy

Mt Baldy is a 10,000 foot high peak just an hour from the heart of Los Angeles. I hiked it this past Saturday with a buddy and it kicked my ass. I'm thinking it was tougher than the recent hike up Mt Bierstadt with my MMRF team.  Anyhow, it's one more notch in the training belt all leading up to Kilimanjaro in Feb.



Wednesday, August 3, 2016

5 Years, 3 months and 1 day

August 2 came and went. It marked 5 years and 3 months since my diagnosis. Median survival is 5 years. I'm cruising along.

West Coast Conference on Work & Cancer

If you work and have cancer, you may be facing challenges beyond your health issues. On October 15 in Los Angeles, the Cancer and Careers organization that may be for you. They are holding an all day, free conference to address work related topics and issues related to cancer. Below is the link:


West Coast Conference on Work & Cancer

Monday, July 25, 2016

12 Things Only a Survivor Can Tell You About Cancer

Interesting and fairly accurate short read....


https://www.ihadcancer.com/h3-blog/07-25-2016/12-things-only-a-survivor-can-tell-you-about-cancer

Moving Mountains for Multiple Myeloma

Moving Mountains for Multiple Myeloma, (MM4MM), is a collaboration between CURE Media Group, Takeda Oncology and the Multiple Myeloma Research Foundation (MMRF) to raise awareness and funds for myeloma research.

Patients, caregivers, myeloma doctors and nurses and myeloma loved ones take on challenging mountains – Mount Kilimanjaro, the Grand Canyon and Peru’s Machu Picchu – to demonstrate that the advancements being made in recent years, funded and spearheaded by the MMRF, are helping patients live longer with a higher quality of life than ever before.

In January 2016, a team of 15 MMRF supporters, which included four myeloma patients and a myeloma doctor, climbed Mount Kilimanjaro, the highest free standing mountain in the world. This team raised close to $250,000, with all proceeds going to the MMRF to accelerate research for next generation treatments.

On May 12, 2016, a team of 13 hikers took on the challenging Bright Angel Trail in the Southern Rim of the Grand Canyon. Three myeloma patients, a nurse who treats myeloma patients, caregivers and others who are directly connected to myeloma made up the team.

Beginning August 9, 2016, a team of 22 will begin their journey to Peru’s incredible Machu Picchu, via the Inca Trail. This trek will include four myeloma patients, a myeloma doctor, and four myeloma nurses, in addition to loved ones who climb to honor a patient who is living or who has lost their battle with this difficult disease.

Multiple myeloma is an incurable cancer of the blood that carries only a 46.6 percent chance of survival beyond five years, according to the National Cancer Institute. While great progress has been made in recent years to develop novel treatments, continued research funding is needed to get to the ultimate goal: a cure.

“There is nothing more powerful than working together with multiple myeloma patients, doctors and nurses, caregivers and partners like Takeda Oncology and CURE toward a common goal,” says Alicia O’Neill, a climber for the MM4MM program and an MMRF executive. “Pushing beyond perceived limits, working together with our dedicated partners, moving into action to demonstrate — through our physical feats — that we can be a source of funding and of inspiration is at the core of why we are climbing.”

When those touched by myeloma see patients taking on these incredible feats, we hope that they are inspired. While not every patient can dream of summiting the 19,341-foot peak in Africa, we hope our efforts and accomplishments serve as inspiration that we are stronger than we know and can be a positive part of the work that is being done to extend lives as we get closer to a cure.

Kilimanjaro climber and multiple myeloma patient Bod Dickey, of Shell Beach, California, says, “For me, Mount Kilimanjaro was validation that multiple myeloma is not the end. The climb illustrates to patients and caregivers that multiple myeloma offers us an opportunity, if not a requirement, to press harder.”

Takeda Oncology and CURE are proud supporters of the Moving Mountains for Multiple Myeloma Program.


Here is a video of the recent Grand Canyon hike. So powerful and moving.



Monday, 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.


Anyhow, here's a short op-ed to read. http://www.latimes.com/opinion/op-ed/la-oe-welsh-cancer-immunotherapy-20160717-snap-story.html

Thursday, July 14, 2016

27 heartwarming pics of a man taking his dog on a farewell trip

Courtesy of upworthy.com:
Robert adopted Bella as a puppy. She's now 9 years old, or about 63 if you're counting in human years. 


In May, a veterinarian told Robert that what he initially thought was a shoulder injury was actually cancer and that it had spread to Bella's lungs. The doctor had to amputate one of Bella's legs and told Robert she had three to six months to live.
That was 14 months ago.


Determined to show Bella the same kind of unconditional love she had shown him throughout her life, Robert hit the road to give her the farewell tour of her doggie dreams.
As for Bella, he says, "She teaches me lessons every day, and I am so blessed to spend my time with her."


http://www.upworthy.com/27-heartwarming-pics-of-a-man-taking-his-dog-on-a-farewell-trip?c=ufb1

Monday, July 11, 2016

Mt Bierstadt conquered. Next up...Kilimanjaro

Perhaps conquered is too strong a word. Completed. Survived. Did it.

I'm back home from a quick trip to Colorado to meet my Kilimanjaro team and to train for Kili by hiking a 14er peak, Mt Bierstadt which stands at 14,060 feet. 16 people all instantly connected by a common goal. Team members are from across the country. I miss them already.

Including me there are 6 patients on the team. Terry from Alaska. Nancy from Sacramento. April from New York. Gary from South Carolina. Mark from Seattle. I shared a room with Mitch from Cincinnati who is climbing for his dad who has myeloma.

I arrived in Colorado Friday afternoon. Friday night I couldn't sleep. I was worried if I'd be able to complete the hike. I didn't know how I'd react to the altitude, I wondered if I was doing the right thing. Yes I'd been training. But I had chemo 3 days earlier, I'm getting older and I am generally always low on blood, which as we know is crucial for moving oxygen through the body.

Saturday we ate breakfast and went to the trail head. The hike started at 8 AM. The rocky peak of Bierstadt looked a million miles away.  We reached the summit as a team around 1:30. 6 miles of climbing. I made it. Arriving at the peak, the emotions flowed from all of the patients. We've gone through a lot. I was a crying mess.

I felt pretty good at the peak. No problems with the altitude, That's a very good thing. Kilimanjaro is 19,000 feet high. That's Bierstadt plus 5,000 feet. My legs will a little sore but I figured the downhill return hike would be a piece of cake. Nope. I was in the last group to finish, arriving back at the trail head at 6. 12 miles and 10 hours of hiking. I was exhausted. My legs were jelly. My feet were aching. But it was done and I did it. Wow. Sometimes I mentally block out that I am old and have cancer, and for a moment I was disappointed with myself that I got so beat up by the mountain. That's silly sure, but it's still a thought that crossed my mind.

 Stepping back though, I am super happy and extremely proud of myself. This is definitely a life altering event. Whereas before the hike, I had a bit of worry about going to Kilimanjaro, now I am nothing but excited. I know what training I need to do and I know I can do it. Guaranteed.

Sunday the team/new family ate breakfast together, exchanged phone numbers and headed back to our homes. On to Kilimanjaro. Thanks everyone for the support and motivation.











Thursday, July 7, 2016

Team Tracking

Moving Mountains for Multiple Myeloma and the MMRF have created a site to track our training progress this weekend.  Follow this link over the weekend if you want to see how we're doing, along with pictures of Saturday's 14,000 climb.


http://www.movingmountainsformultiplemyeloma.com/

Wednesday, July 6, 2016

Mt Bierstadt, CO

Kilimanjaro training kicks up a notch this weekend. The team is traveling to Colorado to climb Mt Bierstadt, a 14,000 peak.  I feel like I'm in good shape. The two things have me an itsy bitsy worried are that I just started a new cycle of chemo yesterday. This means achy and sore muscles, without climbing a mountain. And, while my hemoglobin is ok and I don't need procrit this week, it's still a little low...hovering around 10. Normal is 13-15.


But I'm doing this! It's a good test. Yikes. No problem! Yikes.


And if you want to contribute to my Kilimanjaro climb/fund raiser, simply click on this link:


Matt Climbs Kilimanjaro to Raise Funds for the Multiple Myeloma Research Foundation

Friday, July 1, 2016

Monthly Berenson Visit

Everything good. Myeloma stable.  Stay the course. Pre-visit breakfast at Factor's deli on Pico in West LA. 


Wednesday, June 29, 2016

Kidney Power

My biggest fear since diagnosis has been my kidneys failing. Early on we were on the brink of failure. If you were to go simply by creatinine levels, they failed a long time ago. In fact I had a kidney doctor who, without consulting me, scheduled me for dialysis.  I said no to that and changed kidney doctors.  I have never been symptomatic of kidney failure. No swelling, no nausea, I've always been able to pee. So I have never done dialysis. My fears haven't been realized. I'm all for facing your fears. But this is one fear I want nothing to do with. Dialysis? #FTS


Since we have the myeloma under control, the creatinine dropped from the 8s to mid 3s. For the past two years, I have hovered in the 3s. When I was sick a few months back it bounced to over 4 and that gave us some concern that the myeloma was gaining strength. But I got healthy and the creatinine went back down. For my past two lab results, I've had 3.22 and 3.23.  Record lows for me.


Also recently, my current kidney doctor gave me some flexibility on the food I can eat. I had been on a fairly strict renal diet, i.e. low potassium and low phosphorus.  Now I can cheat a little. I still don't go crazy, but the flexibility is nice. This is especially true since I've cut out beef, pork and chicken. I need plant based sources of protein, and these often have a bunch of phosphorus or potassium.


My most recent labs are significant, because we can see the results of my expanded diet. And all is well. My potassium and phosphorus remain low. My kidneys are in their own kind of beast mode.

Thursday, June 23, 2016

The Original Beast Mode

I talk about going into beast mode for my Kilimanjaro training. Beast mode is a mind set. It's best described by the originator of beast mode, Marshawn Lynch, recently retired NFL running back. Follow the below link and watch the video. Enjoy.

Over and over and over




Wednesday, June 22, 2016

Wilbur Ties the Knot

I'm pretty sure I've mentioned Wilbur before. He's a friend's rescue Basset. The friend is John DiNunzio, who is a bike planning extraordinaire located on the Central Coast of California. John sent me this picture of Wilbur's recent wedding, marrying Jazz. Thought I'd share.




Lowered Immune System Effects

My treatment and the myeloma mean I am typically immune compromised. During my week off, I'm usually ok. But for a week or so after treatment, my immune system is low and I need to be cautious and stay away from environments that may have lots of germs.


Caution will only get me so far. My body has viral crap that is normally dormant in my system. Wouldn't even know I have the virus. But the low immunity gives the crap a chance to come out of hibernation. For me, it's viral warts. Over the past couple of years, they've popped up in strange places. Toes, private parts, etc. Yesterday I noticed them coming in on a finger. This is new. This is also very maddening. My fricking finger? Come on, give me a break! I need to make an appointment with dermatologist. Until then, no shaking hands. That I can live with. But no high fives. That sucks.


We're constantly searching for foods and supplements that will boost my immunity. It's a topic that cancer docs don't really get into. So I and we are left to our own devices. If I discover something, they only thing I can get from the doctor is if whatever I discover impacts the kidneys or how a supplement interacts with my cancer drugs.



Tuesday, June 21, 2016

The Mysteries of Myeloma

I like to think that after 5 years I have this myeloma thing figured out. I understand my treatment and how it's going to make me feel. I know what to look for in my labs. And I think I generally can gauge how I am doing by a variety pack of symptoms. Then there are days like today. I have chemo later this afternoon. This past weekend  I got in two good hikes. Yesterday  I felt good, no lingering achiness from the hikes. This morning I should feel great. But my body and legs ache again and I'm a little worn out. WTF?  But that's the thing. We never really know how we might feel day to day and what is the cause. I'm basically on cruise control with treatment. I'm healthy enough to climb a mountain. But you can never relax and not think about myeloma. I've asked other patients who have had the disease for a decade or longer if they are ever able to go a day without thinking about myeloma. And the answer is no. It's always hanging out in their thoughts. Freaking annoying. Today's aches and pains are unexplainable. It's just one of those things. I'll go to the gym before chemo and try to work things out. A little stretching, movement and exercise should help.


Support my Mt Kilimanjaro Climb to Raise Money for Multiple Myeloma Research Foundation

Sunday, June 19, 2016

Training in Palos Verde

Heat and hills today. Kicked my ass. But I did it. One step at a time. 




Friday, June 17, 2016

Beast Mode for Kilimanjaro

It's an off week from chemo. It's my break between days 1 and 15, if you're interested in schedule. My creatinine this week was 3.22. Tied for the lowest it has been since I was diagnosed. That's fantastic, means the myeloma is under control. Nice results as time passes and my 5 year cancerversary is distant in the rear window.


As much as possible, I've attempted to work out and stay in shape this whole time, even during chemo weeks I try to get some semblance of a work out.  Of late and necessarily, my workouts have been kicked up a notch. Cardio and leg stuff specifically is the focus. And here's where I can tell I am getting older and I have cancer. It's a bear. Gone are the days I can get in shape lickity split. Last weekend was particularly difficult. My bounce back from chemo usually occurs 3-4 days after treatment. I do chemo on Tuesdays. But last weekend, I was  achy and tired the whole time. I tried to do my Kilimanjaro training, but it was super tough. I felt a bit defeated and was wondering why I thought I could do this.


But! This week is totally different. I can tell I'm finally getting stronger and my cardiovascular capabilities are increasing. Now I'm pretty confident I can do this. In 3 weeks, the Kilimanjaro team is going to Colorado for team building and training hikes at high elevation. Kilimanjaro is 19,000 feet. While in Colorado we'll get up to about 14,000 feet. This will definitely be a test for me. I'm always low on blood..ergo less oxygen to keep the muscles moving.  I need to stay in beast mode.


Speaking of Kilimanjaro, I've reached $5,000 in fund raising. Half way to my goal. If you're interested in learning about why I am climbing or if you want to make a donation, simply go to:
Matt's Mt Kilimanjaro Climb for the Multiple Myeloma Research Foundation