See You In Thirty Days

Since it appears that many people new to my blog have not read all of my previous posts (shocking, I know!) I thought it would be appropriate to re-post my original thoughts on why I am writing this blog and the source of the title.

In 2002, a few days after my 45th birthday, I was diagnosed with Multiple Myeloma (bone marrow cancer).  Happy Birthday!  When I got the phone call from my oncologist informing me of the diagnosis, I had learned just enough about Myeloma to ask “what stage was it?”  When he told me it was stage three, I said “well that’s not so bad, what out of ten?”  To which he replied “no, out of three.”  Well, I thought that was hilarious and cracked myself up.  I think that was the point that I became good friends with my oncologist.

Multiple Myeloma is not a particularly cheery cancer.  It is a terminal cancer with no known cure – YET!  At the time I was told that I would be lucky to live three years.  After some pretty intense treatments including a stem cell transplant using my own “cleaned up” stem cells, I am now going on sixteen years being pretty much Myeloma-free.  And for the most part they have been GREAT years.

That is, except for the year and a half starting on November 30, 2016 when my oncologist informed me that I had a full blown case of Acute Myeloid Leukemia.  He told me I had to go into the hospital the next day where I would be for a month starting my intense treatments.  I said “Come on, really? Drop everything and go in for the month of December?”  He told me that if I didn’t, I would be dead in two weeks.  Well, guess who dropped everything and went into the hospital the next day?  Merrrrry Christmas!

My Leukemia treatments were a heck of a lot tougher than my Myeloma treatments.  It included another stem cell transplant, this time using my brother Kyle’s donated stem cells (love that Kyle!!!) and a much longer and tougher recovery period.  The good news is I am now fifteen months post-transplant and at this point there are no signs of Leukemia in me!  While they are all very happy, I don’t think my doctors quite know what to do with me.

Anyway, as most cancer patients who are undergoing treatments know, “See you in thirty days” is usually the time between doctor appointments.  You have thirty days to worry about if the other shoe is going to drop, or you can try to live your life.  Learning how to live your life in thirty day increments is a process and it takes a while to get to the point where you can accept your situation and strive to make the best of it.

Hopefully my experiences can be an encouragement to others and my crazy life can add a few laughs along the way.

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Okay, So What Now?

So you’ve beaten the odds and survived a year and a half of very tough treatments for Leukemia.  Congratulations!!  You know you should be so full of joy and enjoying each day as it comes along, and you really are.  But when you are quiet there is still that whisper of a voice in the back of your head reminding you of the seventy-five percent chance you are not going to survive past the next four years. 

I wonder if that is why I can no longer stand to hear the commercials on TV promoting some wonder drug or another.  I mean they really, really bug me now.  And don’t let me anywhere near those commercials promoting drugs to take during chemo!  I have to walk out of the room whenever they come on.

Maybe it is because I still am not one hundred percent recovered.  I mean I am almost there and can function fine; it’s just that last little edge isn’t back yet.  And that bugs me.  But maybe it is more the case that as many times as I tell myself I have accepted this as my new reality and have made my peace with whatever might come, I really haven’t.  Truth be told, that is a pretty huge thing to make your peace with.

In no way am I meaning to make this a “poor me” story in search of encouragement from others.  It is just my reality right now, and I am sure it is also the reality of many other people who have gone through similar situations and I hope are reading this.  Know that you are not alone.  I think it is best to call it what it is, cut myself some slack for having these feelings, continue to work at accepting this as my life now and to make the best of it.  And know that it will take some more time to fully “get there.”  And that’s okay, too.

And here are two GREAT reasons to be happy with every second of every day – my two (currently!) grand kids – Anne (age 6) and Porter (age 2 ½).  Yee-haw!!

 

What is a Stem Cell Transplant?

While I have mentioned numerous times in my posts that I have had two Stem Cell Transplants, I realized there are a lot of people who don’t really know what they are.  So I will give you my version of what they are and how they work, but please do not take this as gospel.  Talk with your doctor about the details.

The American Cancer Society has a very good description of Stem Cell Transplants at: https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/stem-cell-transplant.html

WebMD also has good descriptions: https://www.webmd.com/cancer/features/stem-cell-transplant-types#1

While your body has all kinds of stem cells which contain the directions on how to create the organs in your body, I will be talking specifically about the stem cells that create the blood-making system in your bone marrow.  These stem cells are present in everyone’s blood stream.

When a person is diagnosed with Multiple Myeloma, this is actually a cancer of the bone marrow.  The bone marrow is the spongy material in the center of all your bones.  In this material are the cells that create your red blood cells (which carry oxygen throughout your body), your while blood cell (which serve as your disease-fighting immune system) and your platelets (which enables you to have blood clotting capabilities).  When these cells are created they are excreted through your bones and into your blood stream.  With Myeloma the cancer cells multiply in your bone marrow and crowd out the blood-creating cells.

As I have detailed in some of my earlier posts, there are a lot of different drugs and treatments both on hand and “in the pipeline” that are aimed at killing off the Myeloma cancer cells in the bone marrow.  In many cases, doctors recommend an Autologous (“Auto”) Stem Cell Transplant.

In these kinds of transplants, your doctor will initially give you different drugs and treatments, all of which are aimed at reducing the level of Multiple Myeloma in your bone marrow to as low as possible.  Many times they can’t completely eliminate the cancer, but the lower they can get it, the better.  These treatments can last anywhere from one month to several months.

Eventually they will get the cancer presence as low as possible, and then they will move into the transplant.  First they will give you a shot each day for a few days that will stimulate your body’s creation of your stem cells circulating in your blood stream.  Next they will go through the process of “harvesting” these stem cells from you.  This is a relatively painless process where they draw blood from one of your arms, send it through a machine that separates out the stem cells and puts them in a bag, and then returns your blood back into you in your other arm.  They have different things that impact how many of your stem cells they need to collect – your body size and if they are going to save a batch for a possible future second transplant.

Once they have collected your stem cells, it is time for the big guns.  Here is where they will give you a very serious and toxic mix of chemo drugs.  These drugs are intended to kill off all of your bone marrow throughout your body.  This is not fun you will likely get pretty sick during this part of the process.

After a few days and they determine the drugs have done their job and killed off all of your “old” and diseased bone marrow, they will infuse your stem cells back into your body.  Since they have killed off all of your old bone marrow, this infusion day is typically called Day 0 (sometimes referred to as your new birthday.)  Your stem cells will then migrate into your bone marrow and start setting up a new, “clean” shop where they will start creating all new, and hopefully disease-free blood cells.

Over the course of the next few weeks you will need to be monitored very closely.  First off, without any white blood cells you don’t have an immune system, so it is very easy to get sick and it can quickly develop into something very serious.  You will also be checked every day on the progress of your new blood creating system and if you need to have red blood cells or palettes infused, a boost given to your white blood cells, and/or an infusion of any of the many chemicals your body needs to survive.

Hopefully after a month or so, your new blood creating-system will be up and running in your bone marrow and spitting out disease-free blood cells.  But it will still take another month or two before you start to feel “normal” again.  As I described in an earlier post, going into the transplant in as good a shape as possible and then pushing yourself to start walking every day will be a great help in your recovery.

Sometimes doctors recommend a second, or tandem, transplant where you go through the entire routine again.  There are a lot of different opinions out there about this, so be sure to check around so you can make an informed decision.

In the case of my Acute Myeloid Leukemia, that was a cancer primarily of the white blood cells.  The “typical” treatment also includes a stem cell transplant, but this time using the stem cells from a matched donor.  This is where having several brothers and sisters comes in handy, since they are the most likely to be a match to you.  Otherwise you will need to check on your children and/or the National Bone Marrow Registry:  https://bethematch.org/

Once a matched donor is identified, the process is similar to the Auto Stem Cell Transplant, except the stem cells are harvested from the donor.  The big difference is the fact that your body’s natural reaction is to reject a new organ put into your body.  So you will be given countless drugs to hopefully mitigate and control this rejection process.  As a result, this kind of transplant is much, much tougher on your body.  I was told that I had about a 50/50 chance of surviving the first six months of the process.  That really hit me – basically the odds of a coin toss!

But this is when you need to pull yourself up and determine that you will be in the positive fifty percent!  It will be a long, hard fight, but you can do it.  I was told it typically takes a year and a half to two years before you get back to your pre-transplant baseline, and I have found this to be pretty accurate.  But just focus on one day of recovery at a time and before you know it, you will be there!

Don’t Despair

Sixteen years ago when I was forty-five years old and diagnosed with Multiple Myeloma (bone marrow cancer) I was told that it was an incurable, terminal cancer.  I was also told that I would be lucky to live for three more years.  But after some serious chemo, a stem cell transplant using my own “cleaned up” stem cells and more maintenance drugs I have survived way past my initial expiration date.  And I think my doctors don’t quite know what to do with me!

With all of the great work being done around the world, they have developed several new drugs and therapies so that now they tell newly diagnosed patients the life expectancy is more like five to seven years.  And truth be told, with all of the new drugs “in the pipeline” there is a now a reasonable hope they might find a cure for Myeloma sometime in the near future.

While this sounds all well and great, if you have recently been diagnosed with Multiple Myeloma it is easy to fall into the black hole of “I have cancer.”  And you do and it is terrible.  But don’t despair.  There truly is hope.  Talk with your doctor.  If you don’t feel like your oncologist is up to speed on all the newer treatment options, then find another doctor who is.  Go online and find people in your area that have Myeloma and see what they think of their doctors.  Do not waste time worrying about hurting your doctor’s feelings. 

The International Myeloma Foundation has an amazing web of support groups across the country.  Track down the group nearest to you and reach out to them:  https://www.myeloma.org/support-groups

You HAVE to be your own best advocate and look out for yourself.  While Multiple Myeloma is not necessarily the imminent death sentence it used to be, it still is not a walk in the park.  It seems to me like it is now all about trying any and all treatments that are available to buy time while they continue to work toward finding a cure.

And at the same time, making the most of the time we have been given!

Taking the Bad with the Good

For me, this is a very tough post to write.  Celgene.  This is an international pharmaceutical company that had its first real financial success many years ago when it discovered that the banned drug Thalidomide was good for treating Multiple Myeloma (bone marrow cancer).  They obtained the patent on the drug and developed (and patented) a very strict drug disbursement program, due to the highly toxic nature of the drug.  The worst of this drug’s side effects are the severe birth defects it will cause.  The drug they started delivering was renamed Thalomid.  It has several other possible side effects including peripheral neuropathy – that is the killing off of the nerves in your hands and feet.

Celgene initially sold Thalomid for a few hundred dollars for a twenty-one day (one month) supply of pills.  Celgene increased the price of this drug steadily over the following years.  Several years ago Celgene developed a next-generation drug from Thalomid called Revlimid.  It is very similar to Thalomid with its severe birth defects side effect, but it is not quite as bad with causing peripheral neuropathy.  While other pharmaceutical companies have since developed their own drugs for Multiple Myeloma, Celgene’s Revlimid seems to still be the leading drug that is prescribed internationally to treat Multiple Myeloma. 

Another stated side effect of Thalomid and Revlimid is the five to ten percent possibility of the eventual development of a secondary cancer – like Leukemia.  Sixteen years ago when I was initially diagnosed with Multiple Myeloma, I was told my odds were that I would be lucky to live for three years.  So the small possibility of developing another cancer “somewhere down the road” versus the need to take what was then the only viable life-saving drug  was a no-brainer.  Of course, bring on the Thalomid and Revlimid!

After my initial treatments and stem cell transplant using my own “cleaned up” stem cells, I continued taking Revlimid for much of the next fifteen years as a maintenance therapy.  Unfortunately, guess who was in the five to ten percent group who might develop a secondary cancer – little old me!

Celgene has continued to increase its price for Revlimid to where it now charges somewhere near seven thousand dollars a month for a one month supply.  While I cannot find the Company’s quote to notate here, I understand that Celgene has stated they feel they are entitled to charge as much as “other life-saving drugs are charging.”  I calculated that over my fifteen years of treatment with their drugs, my insurance company and I paid nearly one million dollars to Celgene.

According to Celgene’s 2017 Annual Report:   http://files.shareholder.com/downloads/AMDA-262QUJ/6318532010x0x978672/138C3639-1839-499D-8191-34F9E08A0CBD/Celgene_AR_complete_PDF_041718.pdf 

Celgene collected over eight billion dollars in sales last year from Revlimid. Over eight BILLION dollars in one year alone!!  Celgene makes so much money from its portfolio of drugs that its CEO is paid over twelve million dollars a year, between his salary and company stock.

But Celgene is not run by fools.  They are very good at donating money to support the International Myeloma Foundation, the Multiple Myeloma Research Foundation and the Leukemia and Lymphoma Society as well as several other Myeloma support organizations and activities.  They also support some doctors around the world with their research efforts.  And of course, you will see their company logo included everywhere they make a donation.  Also, like most pharmaceutical companies, they have a program to provide low or no-cost drugs to patients who cannot afford them. 

However, here is an example of how Celgene’s support works.  They typically make an annual donation to the Leukemia and Lymphoma Society to support that organization’s fund to help Myeloma patient’s pay their medical insurance costs.  I personally know of one case of a Myeloma patient in North Carolina who turns in his four hundred dollar a month Medicare insurance receipt and he gets reimbursed for this cost by a grant from the LLS.  Great!  But then Medicare pays Celgene its seven thousand dollar a month cost for his Revlimid prescription.  Hmmmm. You do the math.

As much as I want to hate Celgene and blame it for my past year and a half life-threatening fight with Leukemia as well as my current unemployment, I know that I quite likely would not be here if it wasn’t for me taking their drugs.  I would have missed seeing my three children graduate from high school and college, their two weddings and two (and counting!) awesome grandchildren.

As you can tell, this has been a very hard thing for me to get my brain around.  At the end of the day I guess I have to accept the bad along with the good.

Don’t Buy That Old Banana

I’ve learned something the hard way.  Pay attention to your body and how you are feeling.  Doing the typical guy thing of putting it off and not paying attention because it isn’t convenient is NOT the way to go.  Same with the old “I don’t have the extra money on hand right now to pay for a doctor visit.”  Maybe some women do this too, I don’t know, but I suspect they are much smarter than that.

One morning I woke up, went to shave and when I looked in the mirror I saw that I had bruises all over my chest and arms.  They weren’t painful and I called to Nancy and asked her if she had been slugging me the night before in our sleep.  Without missing a beat, she replied “not any more than usual.”  When she saw the bruises she immediately said that I need to go in and see my doctor.  Of course my immediate reaction was that I didn’t have time for this because of meetings at work.

But at Nancy’s insistence, I went in to my oncologist’s office.  While they were drawing my blood I was thinking how I had been feeling pretty run down lately, but then I had also been working very hard on a special event project at work.  But there was no avoiding that I was looking like a five day-old banana.

Come to find out that my blood counts were out of whack – everything was low, especially my platelets.  My doctor repeated the blood tests later in the week and my platelets had dropped even further.  My doctor then had them take a bone marrow biopsy.  This is where they drill into your hip and remove a little bit of your bone marrow, which is then sent to the lab.  This was on a Friday and my doctor said they should have an idea what is going on by the next Friday.  So I compartmentalized all of this and went back to work and my life.

Well, the next Tuesday afternoon I was on my way back to the office from a meeting and decided to partake of a guilty pleasure – a lunch from Taco Bell.  I walked back to my car intending to eat my lunch “on the road” on the way back to office when my doctor called me on my cell phone.  I sat in the Taco Bell parking lot listening to my doctor tell me that he was sorry to tell me that I had Acute Myeloid Leukemia.  After he explained to me what it was, he told me that I needed to go into the hospital the next day for a month of extreme chemo treatments, and then I was looking at a long period of treatments. 

I was stunned.  I asked if I really needed to go into the hospital the next day, December 1st, and spend all of December in the hospital.  He told me that if I didn’t, I would likely be dead in two weeks.  Well, guess who went into the hospital the next day?  That afternoon I drove to the office, packed up my stuff and put together instructions for the rest of the staff to cover my work, then went home and told Nancy.  Needless to say I lost my appetite and was not able to eat my delicious Taco Bell lunch.

Moral of the story – pay attention to your body and DO NOT put off having things checked out because it is inconvenient.  And maybe don’t go to Taco Bell for lunch, although I am not ready to totally write that one off yet!

The Depresh

Depression, or as Nancy’s Mom – Gobby – used to call it “The Depresh.”  You are likely going to have to deal with it at some point, or several points, in your diagnosis, treatments and recovery.

It can hit you in many ways, starting with the obvious “holy crap, I’ve got cancer” to the general Depresh that creeps in as you wage your daily fight to try to feel better and not succeeding at it.  Then there’s the great one about going back to work fifteen years ago after you have recovered sufficiently from your stem cell transplant and the President of the Board takes you out to lunch to tell you they will not be renewing your contract.  Also, it would be best if you don’t return to the office because it will make everyone feel uncomfortable knowing that your work decisions don’t matter since you won’t be continuing with the company at the end of your contract.    I learned they had decided they “couldn’t afford to have an Executive Director that was going to die on them.”  Nice!

I saw that when Robin Roberts returned to her job at Good Morning America after her stem cell transplant, they had all of the Muppets come on the show and welcome her back.  Unfortunately it doesn’t work like that for everyone. 

Including when I was diagnosed with Leukemia and began my year and a half of treatments, my employer had to let me go because they needed to have a fundraiser on staff, and I couldn’t do it.  Not that I blame them, but it was still pretty crushing losing a job with an organization that I loved.

Then there’s the Depresh that follows the joy of “hey, I am still alive” with looking at your one hundred thirty-five pound self in the mirror.  You look like an escapee from a prison camp!

So, not only are you fighting to regain some normalcy with your health, but you also have to find a new job to help support your family.  And we all know how much fun that can be as you get older.  We also know that you have to keep a positive outlook when you are doing the job search.  Good luck with that!  But the truth is you’ve simply got to do it.

You HAVE to share these feelings with your doctor.  They see this all the time with their patients and they have a great range of drugs that can help lighten up the Depresh.  And there is no shame in taking these drugs!  Let’s be crystal clear on this – there is no shame in taking these drugs!  They are mostly mild, you won’t get addicted and you won’t be on them forever.  But you won’t be able to move forward without them.  Trust me, I know.

Multiple Myeloma Diagnosis

Unfortunately, for a lot of people their Multiple Myeloma can go un-diagnosed or misdiagnosed for a long time.  A lot of doctors just don’t think about it when they are presented with the symptoms.  These aren’t the only symptoms, but they can include:

  • wacky blood counts (red and white blood cells and platelets)
  • an excessive amount of calcium in your system messing up your kidneys
  • deteriorating bone and cartilage damage, especially in your spinal column

But once it is suspected, a bone marrow biopsy – where they drill into your hip and pull out some of your bone marrow for analysis in the lab – will quickly and definitively tell your doctor and you what is going on.  Once they get that information, your oncologist will lay out your treatment options and plan your course of action.  Here is where it is usually a good idea to get a second opinion on treatment options.  Your doctor should not be insulted by this and if he/she is, that doesn’t say a lot about your doctor.

My Multiple Myeloma diagnosis came in a little bit of a roundabout way.  At the time I was in a very stressful situation with someone I was working with.  Normally I am the calm person in the room, but this guy really knew how to push my buttons.  One day I noticed I had burst a blood vessel in the white of my eye.  Normally that is not a big deal, it just looks terrible.  A few days after it went down I popped one in my other eye.  That was enough for Nancy to make me go to my doctor for a blood pressure test.

Of course my GP couldn’t see me for several weeks, so I went in to see his Physician’s Assistant.  She said my pressure looked ok and she drew some blood for tests.  She called me the next day and told me I needed to come back to her office that day so she could draw some more blood. Hmmmmmm!  As I was sitting there and she was drawing more blood, she was talking about blood this and proteins that.  I was busy thinking about the company’s annual budget and our upcoming Board meeting.  To me she sounded like the Charlie Brown teacher “wah-wah wah-wah.”

But then she said she had made an appointment for me with another doctor for the next morning.  That instantly made me start paying attention – doctors usually don’t make appointments for you, much less without asking about it.  She said the appointment was with a hematologist.  When I asked what that was she said an oncologist.  That was when the truck hit me right between the eyes.

Lucky for me the Physician’s Assistant was as sharp as she was and suspected Multiple Myeloma.  It turned out I had a very advanced case where the cancer cells had taken over eighty-five percent of my bone marrow.  Not good!  But her detection of it literally saved my life.  I was also incredibly lucky to have been set up with the best hematologist in southeastern Virginia – Dr. Dean McGaughey at Virginia Oncology.

Killing Time in the Hospital

What can you expect to be able to do while you are in the hospital receiving chemo prior to your stem cell transplant?  Mostly likely, not much that requires any concentration or focus.  Those are hard to come by once the process starts.  You will be lucky to be able to remember what you had for lunch the day before!  Unfortunately that’s why you will not be able read and stay with any books.  And I just couldn’t stay focused on the TV or my cell phone.

But this doesn’t mean you should throw in the towel and lay there like a vegetable.  A very good friend who visited me early in my stay at the hospital was kind enough to bring me a word search puzzle magazine.  For me it was perfect! It wasn’t too hard, but it did require me to concentrate to find the words and circle them.  And I could easily put it down or pick it up as I felt like it.  I think that magazine helped keep me as mentally sharp as was possible and it certainly helped pass the time.

Nancy got into the adult coloring books, complete with a full set of colored marking pens.  I know that helped her keep her sanity during all those hours when she was sitting there next to my bed.

And as I have said in another post, you HAVE to make yourself get up and walk some every day.  This really is important.  But just keep focused on getting through one day at a time and before you know it, your strength will be coming back and you will be well on the road to your recovery.

These Boots Are Made For Walking

If you are going to have a stem cell transplant – either using your own or donated stem cells – I personally think the best thing you can do to insure a positive outcome and speedy recovery is to get in as good a physical shape as possible pre-transplant.  Then, after the transplant you need to start walking as soon as possible and for as much as possible.

You certainly don’t need to be running a marathon, just be walking at least a mile a day.  As you recover and get stronger, you can gradually increase the distances of your daily walks.  At first, your walks will really wipe you out; but don’t let that stop you!  Keep at it and you will get better and stronger.  Your doctors and nurses will also be encouraging you to do this.  I believe daily walking also reduces the chances of some side effects and infections from your transplant.

At the Duke Cancer Institute and their Adult Bone Marrow Transplant Center where I had both of my stem cell transplants, they have measured that 17 laps up and down the hallway of the transplant wing in the hospital equals a mile.  Twenty days after I received my brother’s stem cells, I was going to be released from the hospital to move to an apartment and then visit the clinic every day for the next two months.  So the night before I was to be discharged from the hospital, they disconnected my IV tube from my catheter.  I was so thrilled at the prospect of getting out of the hospital I was wide awake at 3:00am.  Because it was quiet and I didn’t want to bother anyone, I went into the hallway and shuffled/jogged the mile distance.  Believe me, I could barely move after that, but it was so worth it because it was my way of saying “f*#% you, leukemia!! You are not going to beat me!!”  When my doctor and nurses learned what I did at just twenty days post-transplant, they didn’t know what to say.

Now that it has been fourteen months since my transplant, I have built up to a three mile loop through my neighborhood that I do every morning.  In fact I can now run about 2 ½ miles of it, and walk the rest.  I am certainly not setting any speed records and it really does tire me out, but I can do it!  And you can too!  Just do a little bit each day and keep at it and gradually build it up.  It really does wonders for your mental outlook on everything.