Sixteen years ago when I was diagnosed with Multiple Myeloma, my initial treatments included massive doses of Thalomid (Celgene’s version of the old banned drug Thalidomide). That’s the way it was done back then. Over the next few years they gradually reduced my doses and eventually replaced the drug with the next generation drug, Revlimid.
In addition to the terrible side effect of potential fetal deformities, another side effect (of many) for Thalomid was peripheral neuropathy. That is, the killing off of the nerves in your extremities like your hands and feet. Revlimid was engineered to have less of this side effect, but it is still there to a smaller degree. I did develop a deadening of the nerves in my toes and finger tips and along the outside of my little fingers. I even lost the nerves and sense of taste on the tip of my tongue.
I was always told that once you get peripheral neuropathy that was it. There was no getting rid of it or restoring the feelings in the affected areas. I guess I was lucky because over the course of a several years I regained the feeling in the affected areas, including my tongue. Weird!
However, I think it was not a case of the nerves healing, but rather the other nerves around the damaged areas making up for the lost sensations. I say this because last winter when I was out in the cold for a long period of time shoveling snow from our driveway, the extreme tingling came back in my hands and fingers. The good news was that after a couple of months it went away again.
It was good that my doctor and I caught the peripheral neuropathy early enough and were able to mitigate its negative affects by reducing the doses of my drugs. Lesson learned – don’t be afraid to speak up about personal issues with your doctor!
A little over a year and a half ago I had to go into the hospital for the month of December to start my treatments for Leukemia. It was not a fun month. At the time I was told I had a 50/50 chance of surviving the next six months of treatments. While I didn’t dwell on it at the time, it has recently occurred to me that it was basically a coin flip whether or not I would make it.
Obviously I did make it, and that first month of treatments was made light years better by my little sister Santina coming out and spending about a week with me and Nancy. I say “little” when I should probably say “younger,” but no matter how old we both get she will always be my little sister.
My hospital room in the oncology ward was several stories up and I had a window looking out on the construction site of the new wing they were adding to the hospital. Right away Nancy and Santina noticed there was a row of rainbow colored port-a-potties at the side of the construction site.
Every day we all had endless laughs over the stories Nancy and Santina made up for the workers using the port-a-potties. Sometimes a worker would go down the row opening each door to inspect the situation before he entered. Other workers would carry a newspaper in with them. And yet others seemed intent on selecting a particular colored john. It went on and on. I never knew how creative Santina and Nancy could be with their story telling, but they kept us in stitches – bad pun for a hospital stay!
To this day I can’t drive past a construction site with port-a-potties without cracking up.
So you have made it through a stem cell transplant and are now mostly recovered. Awesome, congratulations! But be sure to adjust your expectations that you will quickly return to your baseline physical and mental condition from before your diagnosis. While you will feel pretty good, know that it takes a long time to fully get back to what you were. And some people never get back to 100%.
It really becomes a matter of managing your expectations and gradually working on your physical and mental recovery. Just like the way you worked through your treatment regimen – patience and one day at a time – is the same thing you need to do with your long term recovery. Stay with your daily workout routine, which should include walking, and try to gradually increase the level of workout and distance covered. “Gradually” being the operative word here. Don’t push yourself too hard or too fast, or you will find yourself being set back. Just resolve yourself to the reality that you can’t rush things, no matter how badly you want to speed up your recovery time. And you should also find something to challenge yourself mentally to give your brain a workout. I found playing Scrabble worked well for me.
You will eventually get to a good physical and mental condition. It might not be fully what you were before, but it is certainly better than the alternative! While your physical recovery will be fairly easy to measure, your mental recovery is a trickier thing to quantify. Depending on the level and intensity of your treatments, “chemo brain” can be a very real and annoying condition.
Don’t let yourself get too frustrated when you find you can’t remember things that you know you knew before your treatments. You have to cut yourself some slack and admit this is what happens to a person after they go through the tough treatments you did. At the risk of being the bearer of bad news, I don’t know if it ever comes back 100%. I am now sixteen years post auto stem cell transplant and I still experience chemo brain moments. And this was before my Leukemia treatments started a year and a half ago! Maybe it is a bit of senior-ites, but I don’t think so. Nancy is close to my age and she doesn’t seem to have these issues.
I think the best answer is to keep at it and to admit to yourself that it is okay when you hit a wall of physical endurance or mental clarity. After all that we have been through, we deserve to be given a break once in a while.
Every time I go to the oncologist’s office, even if I am totally wiped out from my treatments or illness, all I have to do is look around the waiting room or the infusion room to realize how lucky I am. Not lucky that I have cancer, but lucky that I am not doing worse than I am. Because believe me, there are always a bunch of people who are worse off than you are at any given time. On those days I always find myself saying a silent “thank you” for my relative good health and offering up a prayer for strength for the other patients dealing with their cancers.
Life is funny that way. No matter how bad you think you have it, all you need to do is look up and pay attention to put things in perspective. But we are normally so busy working or worrying about the matter at hand that we don’t look up. I know because I was the poster boy for that.
It really is a shame that it takes a major setback to shake us up enough to pull our heads out of the ground and look around. How fortunate are the few people who do not need to be slapped in the face to see the value of what they have right in front of them. Hopefully we can all learn something from them and live our lives appreciating the good things we do have, instead of killing ourselves to get the things we don’t have.
Sounds easy to do, right? But we all know it’s not. We have to constantly make the conscious effort to live this way. But speaking from experience I know it is worth it.
Twenty-nine years ago Tom McCoy and I were the co-lead Producers for the 1989 stage revival of Peter Pan starring Cathy Rigby. This production was originally intended to be a six month tour, which opened in Boston during the Christmas season that year. But it was such a great production and Cathy was so amazing as Peter that it turned into a two year tour! In fact the show was such a hit that it played a nearly sold-out six week run at the Lunt Fontanne Theatre on Broadway during the 1990-91 Christmas season.
Because of this Broadway run, Cathy was nominated for a TONY Award that year for Best Actress in a Musical and Tom and I, along with our investor/producers, were nominated for a TONY Award for Best Revival of a Play or Musical. How cool is that?
After all my years of working in summer stock and regional Civic Light Operas, to not only have a show play on Broadway but to also be nominated for a TONY was about the most awesome thing that ever happened to me professionally. This also meant that Nancy and I were invited to attend the TONY Award ceremony that year. Talk about exciting.
Of course it was a black tie event so before we left Orange County for New York, Nancy went shopping to find just the right dress. And it was a pretty great dress. Imagine our surprise when we arrived at the ceremony and were mingling in the theater lobby and across the room Nancy saw another lady wearing the exact same dress. Oops! But what could we do but laugh, so we walked up behind the lady and Nancy said “I got mine in LA. Where did you get yours?” When she turned around she started laughing too.
Even with the dress it really was an exciting night. It turned out Fiddler on the Roof won the Best Revival award, so I didn’t get the chance to make a speech that went on for too long. Just as well! And Lea Salonga from Miss Saigon won Best Actress. But we all had a GREAT time nonetheless. And Cathy and Tom eventually went on to remount Peter Pan for several other tours and even another Broadway run.
I have been fortunate to have produced many awesome productions before and since then, but I never got back on Broadway or to the TONY Awards again. In fact since a little before my Leukemia diagnosis, I stopped working in Show Business and focused on professional fundraising. When I think about this, Jackson Browne’s song The Pretender always comes to mind. Specifically the lyric “While the ships bearing their dreams sail out of sight.” https://www.youtube.com/watch?v=2ROK1-VvOQ0
I know that sounds a little sad, but that is reality. Sometimes dreams change and that is okay, too. My new dream is to be here for a long time for my family and community. And I am now living that dream!!
The majority of people diagnosed with Multiple Myeloma (bone marrow cancer) or Acute Myeloid Leukemia are fifty-five years old or older, as am I. As a result, we are from a generation who generally hold the people in white coats and are called doctors in very high regard. I mean, if they are a doctor they must know what they are talking about, right? And they know everything, don’t they?
Unfortunately this is not always the case. It isn’t necessarily that your oncologist is a bad doctor, but the new treatments for these cancers are advancing so rapidly that most general oncologists cannot keep up. They only have so much time in a day between seeing patients and doing paperwork that they can hardly stay up-to-the-minute with all the new info coming out on these cancers.
Unless you are sure that your oncologist is staying current with all the new diagnostic and treatment options, you need to find a doctor that specializes in your type of cancer. It really is your responsibility to look out for yourself.
A GREAT source of information on everything about Multiple Myeloma is the International Myeloma Foundation (www.myeloma.org). They have a huge number of support groups across the country. They also have a hotline where you can get a reference for the specialist nearest to you.
If you are fighting Leukemia, the best organization to find help is the Leukemia and Lymphoma Society (www.lls.org).
I cannot stress this enough – make sure you have the best doctor possible working with you. You have to be assertive about this or you might very well pay the price with your life. I know that sounds melodramatic, but it is true. You only get one shot, and you don’t want to waste it with someone who is not well versed in your specific cancer and all the new and ever-changing treatment options.
Thirty-five years ago when Nancy and I got engaged, she pointed out that we didn’t have a coffee table. When I asked her what kind she wanted, she said a country-style one.
At the time I was working show-to-show as a stage manager. While I kept busy, I still had some down time. Back then I was good friends with Bobby Bingham, a very good set designer who was the Resident Set Designer and Scenery Shop Manager for Herb Roger’s La Mirada Theatre. Bobby also designed many of the sets for the Orange County area dinner theaters. It never failed that on many a Sunday night when Bobby needed to load-out the scenery for a show and load-in the next show’s set, he would be short-handed with crew to do the work. Since I usually wasn’t working late on Sunday nights, I would volunteer and give Bobby a hand.
Instead of paying me, I asked Bobby if I could have some of the wood in his scenery shop and work with the tools there. That is how I built my first piece of furniture – a pine coffee table. I learned how to make it with all wood joints: mortise & tendons and dowel pins. Thanks, Bobby! I know, I know, it’s thirty-five years old and now it really needs to be sanded and refinished. But most of the marks are from where our three kids pulled themselves up to learn to walk and left their teeth marks around the edge. And there are now teeth marks from our two grand kids, so I just can’t bring myself to sand all of that out. I guess one of our kids or grand kids will need to do that someday.
Ever since then I have built tons of furniture in my spare time, again using all wood joints and no nails. Over the years I have inherited and purchased good wood working tools and equipment and now have a pretty respectable shop in my garage. Beside us, a lot of our family and friends have pieces of furniture that I built. To me it is more than a hobby, I consider it my therapy. When I am building a piece of furniture, my pea-sized brain cannot handle thinking about anything else than the task at hand. So worries about work or cancer all get put on hold. It is also great that my kids have all worked with me on their own furniture projects.
I just finished building my most recent project, a “big boy” bed for my grandson, Porter. I am really proud of this piece. Luckily I have a friend who took the wood I gave him and the designs, then turned the bedposts on his lathe. At my son and daughter-in-law’s request, I built it out of red oak, but again with all wood joints. All it needs now are the slats for the mattress. Oh yeah, and to stain and finish it. I am going to stain it a darker brown to match the other furniture already in his room.
The cool thing about this bed is that Porter will have it for the rest of his life and eventually pass it along to his family. I really, really love that.
I was raised Catholic and was probably one of the oldest altar boys at our church. But it was kind of cool because of my seniority my brother Jeff and I got to serve most of the weddings that were held there. And the altar boys were usually given “tips” for serving so we would ride our bikes home each Saturday afternoon with a pockets full of cash. Cha-ching!
While today I guess I am a “Fallen-away Catholic” (more on that in a later post), I still feel a fairly strong personal connection with my idea of God and find myself praying most nights. This was especially true in the hospital during all of those long, quiet nights.
When you have to spend months at a time in a hospital bed messed up on a bunch of different drugs, you experience A LOT of long, quiet nights. Well, “quiet” if you consider nurses coming in every three hours to check your vital signs to be “quiet.” Otherwise it is just you and your thoughts.
The funny thing was, even while I was fighting the two cancers I never felt compelled to pray for my healing. For that I figured what was going to be was what was going to be. Instead I always found myself asking for strength to be a better person and to set a good example for my kids.
And I got into the habit of saying the Rosary each night. For those not familiar with the Rosary, it involves praying for five intentions and a lot of Hail Mary’s. My sister Santina wisely pointed out to me that the repeated Hail Mary’s are basically a form of meditation. And she’s right. I began to realize that when I fell into my rhythm, the cadence of the prayer matched the timing of my heart beat. Pretty neat. Except for the “now and at the hour of our death” part at the end!
In addition to praying for my family, both immediate and extended, I found myself usually asking for blessings and protection for all the hundreds of people literally around the world who were keeping me in their prayers. I also was never able to shake the thought about people who were out there dying all alone and afraid, and I would pray for their comfort and peace. Same thing with families who were dealing with the loss of a loved one and their need for comforting.
And I’d pray for Pope Francis, although I usually found myself asking that he accept the need for women to be treated equal to men in every way and to actively promote that to the world. And of course for the freaking stupid Church to accept their responsibility for all of the child abuse and make full amends. And you wonder why I am a “Fallen-away Catholic?” Sheesh!
So there you go. That usually managed to keep my quiet nights filled. And it is now a good habit that I still follow most nights.
So I had a follow-up appointment at the Duke Cancer Institute a few days ago. It has been a year and four months since my stem cell transplant (using my brother’s cells) to knock out my Leukemia. I wasn’t expecting any major news and indeed, the doctor was very pleased with my progress.
They did however spring a bone marrow biopsy on me. Surprise! That is where they drill into your back hip bone and pull out some marrow for evaluation. It is the most accurate way they have to test what is actually going on in your bone marrow. As you can imagine, the procedure is not a lot of fun but I have been through enough of them that it is now somewhat tolerable. In fact, I joke that I have had enough of those biopsies that they ought to make everyone’s life easier and just install a beer tap back there.
While I haven’t been up nights worrying about a recurrence of my Leukemia, it is always in the back of your mind playing the “what if” game. Like a Whack-a-Mole game it pops up when you are thinking of other things, usually late at night, and then you can’t ignore the train of thought. Then you have to work very hard to not let it take off and snowball into a mountain of worry.
So when the nurse from Duke called me yesterday to give me the preliminary results from my biopsy, I fought off a minor anxiety attack and took the call. Needless to say, I was very happy to hear there is currently no sign of Leukemia or Multiple Myeloma in my bone marrow. Whew! I knew that was what they were going to say. Yeah, right!
You know what it feels like to have a really big weight taken off your shoulders? It is amazing to me how a mental game like this can so greatly affect the way you look at everything. It is all part of the emotional yo-yo ride you live on when you have cancer. I think the best answer is to enjoy what we have and make the most out of each day. I know that sounds corny and over-simplistic, but to me it really is the truth.
I am one of eight kids. Being a father of three I honestly don’t know how Mom and Dad did it. Well, actually I DO know how they did it (yeesh!) but I am still in awe of them and their ability to have enough energy and love for all of us. It was like a well that never seemed to run out of water. Sure, there were plenty of punishments handed out when we went out of line but we knew that our home and our family would always be there for us.
Even though Dad always worked two jobs, he still managed to attend all of my high school football games. To this day I don’t know how he was able to do that. And Mom didn’t drive, yet she made it to all of my and my brother’s and sister’s important events. And at 93 (Dad) and 87 (Mom), they are still on the job setting an example for all of us kids to learn from.
Last week they flew to Moline, IL to be there with all of us to help celebrate my little sister Santina be installed as the Pastor at the Hope United Church of Christ. It was a great thing and we were all so proud of her. My brother Kyle asked if that means Santina is now pastorized? I’m sure the traveling was hard on Dad and Mom, but you wouldn’t know it by watching them. Again, their love for the family seemed to give them superhuman strength. I hope I have half that much energy when I get to 93 years old! Come to think of it, I hope I make it to 93 years old!!
Yesterday our family bonds were shaken again when we heard that my older sister Gina had some sort of a stroke. Fortunately her husband Rick was nearby and quickly got her into an ambulance and to the hospital. After a real scare she seems to be coming out of it, slowly but surely. Thank God!
I will tell you, you are cruising along thinking all is good when you get smacked up the side of your head from out of nowhere. And what was the first thing anyone did? Get word out to the family! I think our extended family is the definition of the term “strength in numbers.”
And it all goes back to the great, loving example set so well by Mom and Dad. Talk about having a seat reserved for them in heaven!