Immune System – Good! Infections – Bad!

Blood and bone marrow cancers and their treatments usually cause issues with your immune system.  Depending on what phase you are in with your treatments, you can have anything from a weakened immune system to literally no immune system at all.  So you have to be super vigilant about not getting infections because they can take off very quickly and before you know it you are in a ton of trouble.

And hospitals are notorious for being places where you can pick up all kinds of infections.  The good news is that most oncology wards in hospitals are very careful about this and take all kinds of preventative steps to keep you safe.

But sometimes we can our own worst enemy.  When I went to the Duke Cancer Institute sixteen years ago for an auto stem cell transplant (using my own stem cells), I never gave a second thought to the fact that I had an ingrown toenail.  Stupid man that I was (am) I had it for a while and I just never bothered to go to the doctor to have it looked at and taken care of.

Well, when I was going through my transplant and they killed off my bone marrow – and my immune system along with it – we couldn’t figure out why I was getting really sick.  I didn’t want to admit it at the time, but it was pretty serious.  Only after a couple of days did I think to ask the doctor if my toenail might have anything to do with it.  The look on his face told me that he would have smacked me, if he could have gotten away with it.  Needless to say they took care of it and my infections cleared up.

But then for several days when the doctors and their interns were making their rounds, I had to listen to the doctor talk about what I had been through so that the interns would learn from my stupidity.  Very embarrassing!

Hellllpppp!!!!!!

So you are diagnosed with Multiple Myeloma (bone marrow cancer) or Leukemia.  It is time for a crash course in cancer education.  Also, if you have lost your job due to your treatments, what the hell are you going to do to make ends meet in the bills department?

For information about Multiple Myeloma, you can’t beat:

International Myeloma Foundation: myeloma.org/ for information and emotional support, including area support groups.

Multiple Myeloma Foundation: themmrf.org/ for information including new drugs that are “in the pipeline.”

For information about Leukemia and Lymphoma, the best is:

The Leukemia and Lymphoma Society: lls.org/ for information and support.  They also have some financial assistance programs, which will be addressed below.

Of course, there is also The American Cancer Society: cancer.org/ for information and support.

For financial support, you should Google: cancer financial support.  Be prepared, you will get a ton of different listings.  Unfortunately, you will need to slog through each of them to determine if they apply to you.  Some are cancer type specific and some are geographic area specific, and most require proof of financial need.  You should also ask your oncologist if their office has a person on staff to help you find local sources for financial assistance.  All of this is really a difficult burden on top of dealing with your cancer treatments, but unless you are financially sound, we really don’t have much choice in the matter.  Just keep at it and chase them down.

Here are some of the organizations that I found who can help with grants and financial support.  Most of them are only able to offer support when they have funds “on hand” which is not always year-round.

The Leukemia and Lymphoma Society: lls.org/  They have a $500 travel assistance program.  They also have a separate support fund specifically for people with Multiple Myeloma.

Patient Advocate Foundation: copays.org/  They have a program that will help pay for your co-payment on your medicines.

Daniel’s Grace Foundation: danielsgrace.org/  They are a great, all-volunteer organization that serves the Hampton Roads, VA area.  Their mission is “to ease the financial burden of cancer.”  They also have a scholarship program to help student whose lives have been affected by cancer.

Mercy Medical Angelsmercymedical.org/  Their mission is “to ensure that no one in need is denied medical care because of a lack of transportation.”  In my case, they provided a round trip airfare for my stem cell donor.

Angel Wheels: angelwheels.org/  They are “dedicated to providing non-emergency, long-distance ground transportation to financially disadvantaged, ambulatory patients who are traveling for treatment. “  A typical trip supported by Angel Wheels does not exceed 300 miles (one-way), and they do not normally handle trips within a local area or community. Exceptions are made on a case-by-case basis, routinely for cancer patients traveling daily for treatment.  Angel Wheels to Healing utilizes the following resources for assisting patients: Gas cards (provided to help off-set fuel cost for patients), Bus Tickets (Greyhound, Trailways, etc.) and Train Tickets (Amtrak).

Family Reach: familyreach.org/  They are a national nonprofit dedicated to alleviating the financial burden of cancer.

The Bone Marrow Foundation: bonemarrow.org/   They provide financial assistance and resources for patients, caregivers and survivors.

Lee’s Friends: leesfriends.org/  They are a Hampton Roads, VA based organization whose primary mission is “To offer person to person help and needed emotional and practical support to cancer patients and their families who are facing the crisis of diagnosis and treatment of cancer.”

Good Days: mygooddays.org/  For support and financial assistance.

Patient Resource: patientresource.com/Financial_Resources.aspx  This is a lengthy, but VERY comprehensive list of organizations that provide support.  Again, you just need to ge through them one by one to determine if they are a “fit” for you.

The Actors Fund: actorsfund.org/  They can provide some short term support “for everyone in entertainment. “

Also, most pharmaceutical companies have financial assistance programs to help if you cannot afford their drugs.

Don’t despair.  You can do it and find help!  GOOD LUCK!!

Any Port in a Storm

For anyone fighting a blood or bone marrow cancer, your treatments will likely include having a port implanted into you.  In two of my cases, the doctors implanted a Hickman Catheter.  You can learn more about them from this good YouTube video: https://www.youtube.com/watch?v=z6dbV8vY1V8

Also: https://en.wikipedia.org/wiki/Hickman_line

It is a long plastic tube that is surgically implanted, usually in your upper chest, and runs into your jugular vein.  Typically it has three ports, or “lumens” that extend from your body and allows medical professionals to either administer medicine, drugs (like chemo) or blood products into you and/or draw blood samples from you.

In another instance for me, they implanted a version of that catheter in the bicep of my arm.

Trust me; you will develop a love-hate relationship with your catheter.  You will love the fact that you will not need to be stuck with needles every day.  That gets really old really fast!  But you will hate having these plastic tubes hanging out of your chest which are a constant reminder that you have freaking cancer and are fighting for your life.  The day they remove your catheter – which is a simple and painless process – is very much a milestone to be celebrated.

The nurses should always be checking your catheter – making sure it is flushed and clean.  In one of my cases, I had the Hickman Catheter in my chest for about seven months.  I guess that was a little long, because I started getting infections that they traced back to the catheter.  So they removed it and put a new one in my collar bone area for the balance of my treatments.  You can’t be too careful about this.  You do NOT want to be getting infections when you have little or no immune system!

I am not a doctor and can only talk about my experiences.  PLEASE do not take my stories as facts for everyone.  Have an honest conversation with your doctor about all of this.

Dex

Dexamethasone – or Decadron, or commonly known as Dex – is a very powerful steroid usually prescribed to folks fighting blood cancers.  It is normally prescribed in tandem with an other cancer fighting drug and it seems to act as a “force multiplier” to help make the other drug more effective.

Look it up on Web MD or on the internet:

https://www.webmd.com/drugs/2/drug-1027-5021/dexamethasone-oral/dexamethasone-oral/details

Don’t let the small pill size deceive you; it packs a heck of a punch.  If/when your doctor prescribes this to you BE SURE to have a detailed conversation about side effects so you know what to expect.  I don’t know why some doctors don’t do this better.  But trust me on this – Dex can MESS YOU UP.  It will give you mood swings like crazy and if you are not careful you will find yourself snapping at your care giver, which is NOT a good thing.  It can also make your face swell up like a balloon in the Macy’s Day Parade.  And it can mess up your sleep.  “But don’t worry; we can give you another drug to help with that.”  I know they mean well, but sometimes you will feel like a witch’s cauldron bubbling over with all kinds of poisonous drugs and medicines.

On that blessed day when you eventually can go off Dex, your doctor should gradually taper the dosage levels down. Whew!

What Are the Odds of That?

When I was diagnosed with stage III Multiple Myeloma cancer at age 45, I was told that I would be lucky to get three years. Wow! They said at that time there is no cure for Multiple Myeloma, just treatments to extend your life.  BUT many great people and organizations are working like crazy to change that, so time is a very good thing.

After I recovered from the initial shock I came to realize that I needed to focus on what I could control in the near term and not dwell on long term matters.  Naturally, I got my affairs in order but I threw myself into living daily, getting into the best shape possible and my treatments.  I would be lying to you if I didn’t admit that the night before each of my next appointments I couldn’t sleep from the anxiety of what I would hear, but I came to accept that was “part of the gig.”

With the advances they have made in treatments, I believe the life expectancy at diagnosis is now five to seven years.  But the doctors are quick to point out these numbers are getting longer every day and many amazing new treatments and possible cures are on the near horizon.  While Las Vegas isn’t as big as it is because the odds are wrong, the good news for me is that I am now clocking in at sixteen years!  There is something very liberating about surviving way past your expiration date.  “Irv – can I have a price check on aisle four and what is the expiration date on that Keith Stava banana?”  While I am not out of the woods, each day is a gift. I know I sound like a Hallmark card, but the feelings are real.

The Acute Myeloid Leukemia diagnosis was a different kettle of fish.  At my diagnosis, I was told that I had about two weeks to start treatments, or it would be game over.  Once we mapped out my treatment plan, I asked “what were the odds.”  I was told that between the difficulties of the treatments and the high chance of infection during treatments, I had about a fifty-fifty chance of surviving the next six months.  Again, wow!  That was basically a flip of the coin.  But like before, I focused on getting into the best shape possible and on my daily treatments.  And they were right, it was very tough.  But the days passed and seven months later I was able to go home just in time for Father’s Day.  I was a walking skeleton at one hundred thirty pounds (I started at one eighty-five), but I was home and in my own bed. Heaven!

Since then I have gained about twenty pounds and am doing really pretty good.  One day I read that the actress Jill Clayburgh had died of the same Leukemia as I had and shortly after that I heard of another person dying from it.  I got to thinking you always hear about people dying from Leukemia, but never about them living after it.  So I went to my trusty computer and Googled life expectancy rates.  I found that for patients over sixty years old, only about twenty-five percent survive for five years or more.  Ouch!

When I asked my doctors about this, one of them said “yeaaah that’s true, but we don’t talk about that much.”  Another was quick to point out those numbers are a bit skewed because many of the people who get that Leukemia are older and cannot withstand the rigors of the treatments.  So again, after beating the odds on Multiple Myeloma, I choose to believe that I will be in the twenty-five percent to survive Leukemia. Believe it and live it!  The good news is that here I am, fourteen months since my stem cell transplant and there is no sign of Leukemia in me. Onward!

I am not a doctor and can only talk about my experiences.  PLEASE do not take my stories as facts for everyone.  Have an honest conversation with your doctor about all of this.

Let’s do this!

It all started in a corn field in Iowa.  Well, not really, but close and we’ll save that for a later post!

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 3, I said “well that’s not so bad, what out of 10?”  To which he replied “no, out of 3.”  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 (more of that in later posts) including a stem cell transplant using my own “cleaned up” stem cells, I am now going on 16 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 gone in two weeks.  Well, guess who dropped everything and went into the hospital the next day?  Merry Christmas!

I’ll talk more about the cause and treatments for my Leukemia in some later posts, but suffice to say it was 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 14 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 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 awhile to move through it and 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.

PS: Please add comments as you feel like it, and subscribe to this blog.  Or you can bookmark the page address and come back later to check out any new posts! Thanks!