Tuesday, May 21, 2013

The Patient or the Caregiver?

Not long ago, a Multiple Myeloma patient asked the following question on the Multiple Myeloma Support Group Facebook page:  "I often wonder, what is mentally worse, the person who has MM or the wife, husband, etc who cares for that person?"

Of course, responses were many and varied from both MM patients and caregivers. The concensus was that the patient gets the worst end of the deal.  As one would expect, most of the MM patients felt that their caregivers had it worse.

MM leaves no stone unturned, so to speak, in the patient's body. It affects the blood and bone marrow, it can leave the bones, including the skull, with lesions (looking like lace or Swiss Cheese). The bones become weakened and fragile, and with the fragility comes the risk of fractures. The kidneys are affected, as is the immune system; leaving the patient vulnerable to all types of infections.  The various types of chemotherapy treatment, while attacking the cancer cells, also attack the good cells which can also introduce other organ issues.

While it attacks the patient's body, the Multiple Myeloma metastasizes to the entire family - mentally. Everyone is affected, but the caregiver becomes immersed in everything dealing with the patient; the care, the disease, the frustration, the treatment, the decision making process, the drugs, stress, lack of rest, lack of sleep, new responsibilities that were once handled by the patient, and often financial responsibilities. Cancer isn't cheap!

The patient's body is often racked with pain, but once the journey is over - the pain is transferred to the caregiver and the family. The pain isn't the same - it's the pain of grief, lonliness, frustration, anger, despair, decisions, and again financial responsibilities.

I'm so thankful I have not yet had to travel the final leg of this journey. We've been fortunate. My honey was diagnosed in October, 2010 and after six cycles of Velcade/Dex, he achieved a short response/remission the following May. He relapsed after only three months and Revlimid/Dex was introduced. This time, after only two cycles he was, once again, in CR and has been so (without a SCT) since November, 2011.

He is bothered by almost continuous pain, in his back, if he stands too long - even with pain medications. And PN is a constant companion even though he has had no Velcade (believed to be one of the culprits) since May, 2011.

As his wife and caregiver, I've been completely "wrapped up" with him and his cancer since he was first diagnosed. He had enough going on, so I took it upon myself to take care of his medications and his appointments. I began to research every bit of information I could find on the subject as well as any supplement that might help with whatever his current issue was. I became the record keeper and started a journal with minute details of changes taking place within his body - on a daily basis. I created a medication list with the name of the drug, the dosage, the date started and the instructions. His system was, and still is, very sensitive to any change, so that list became extremely important. Whenever he began to have issues, I checked the medication list to determine if there was a new drug or a change to a drug. More than once, that list helped to resolve an issue.

I had always "bragged" about my own good health. I was in my early 70s, and I had never had to take any meds with the exception of a weekly bone strengthener. My honey was in remission and all would be right with the world.  It was not to be.

Just about three months ago, early one morning I was awakened with pains in my chest, arms and jaws. I got out of bed, took a baby aspirin, went back to bed and the pain subsided. The next morning, about the same time, the same thing happened. I allowed myself to lie in bed, for awhile, and try to reason that it was the bone strengthener - perhaps it was causing ONJ. Of course, I couldn't wrap my mind around why my chest, back, and arms were hurting! I finally got out of bed and once more, took baby aspirin - this time I took 4 rather than just 1. The pain didn't go away. I took my Blood Pressure, and I knew enough to know that there was trouble in the making.

My Blood Pressure was dropping and my heart rate had risen to well over 100 (it should be in the 70 - 90 range.)  Around 8 a.m. (4 hours after my pains had started), I called our daughter Gale, a RN.  A good "tongue thrashing" by said daughter for not calling earlier, a trip to the ER, IV meds to get the heart rate down and the blood thinned (it had gotten so thick it was unable to be drawn), a Heart Cath, a few days in the hospital, a diagnosis of AFib, and a handful of new prescriptions later....and I was now among the "elderly" (I do hate that word!) that must take meds.

I could not help but wonder why my heart issues happened AFTER things had gotten better, in our house.  As our daughter Robbie (who made the trip home from Texas to help out) said "Mom, this was a wake up call". I didn't have a stroke, and I didn't have a heart attack, but I had been given notice that I needed to start taking better care of the caregiver: me!

I know, without a doubt, that it's my honey who got the worst end of this deal. I'll continue to do everything within my power to assure that his journey is as comfortable as possible....and I'll try to take better care of me while I'm taking care of him.

Please feel free to leave a comment: 


  1. Oh dear Sarah - I'm so sorry I didn't realize you went through this. That was always a big fear ... that I would become ill and not be able to care for Vern. It's so very hard to think of ourselves when our men are suffering. I did not do well at that, but was lucky that I stayed healthy. Please take care of yourself the best you can ♥

  2. A lot of times after the person you are taking care of gets better the stress you have been holding in as caregiver lets it self lose. Our 32 year old daughter was diagnosed with MM in Jan.2012. I was her caregiver through 4 rounds of Velcade& Dex, Stem cell collection & stem cell transplant.This all took place over 10 months. After her 100 day my body collapsed on me & I ended up in the hospital for 4 days physically, emotionally & mentally exhausted. We have to take care of ourselves so we can take care of them.

  3. Dear Sarah

    Blimely that must have been really scary. Glad to hear that things are to an extent now sorted out.

    As a caregiver I have always been frustrated when I haven't been able to do more for Mike and I remember well how difficult it was during the months after my hysterectomy when neither of us could do much.

    Take care of yourself. :-)

    Lorna x

  4. Dear Sarah:
    My daughter just forwarded your story to me--she must of been struck by how close some of your story is to mine. She was so correct that I just had to comment.

    In in 1994, my new husband was diagnosed with M M when many bone lesions showed up on an x-ray; it was just two years after we'd married at 62 and 52. A year later the diagnosis turned into a MGUS (not total MM). That is how it stayed for these last 18 years with him a highly active golfer, weightlifter an fast walker. In that time, my brother was diagnosed with MM (and had a cell transplant) and my best friend died of it. And two years ago my husband overcame pancreatic cancer surgery , which was most luckily caught early. His being diagnosed with dementia couple of years ago--which has slowed with meds-certainly gave me more responsibility.

    But this spring, a yearly x-ray revealed more bone lesions, including some dangerous, weak-looking ones on vertebrae and his femur looked like it might break any minute. So the journey through the medical world began with the need to find out if it was MM and if so how to treat it because curiously, he had no pain from it. He was told to stop all phys. activity--including his beloved golf. Needless to say, I now do most everything these days. That including getting him lined up for 2 biopsies, spinal surgery to reinforce the safety of his spinal cord. And also appointments with a string of docs who didn't agree on whether to proceed with radiation and chemo with his no-pain factor. In the meantime guess what I ignored (May 2, 2013): you guessed it, A-Fib. My heart beat was exactly what yours was, to where my BP machine couldn't get a reading, and I too was horribly slow getting myself to the ER.

    You'd think a few days in the hospital with A-Fib would be loud and clear shout-out from a care-giver's body. It is, but it is still hard. I catch a whiff of your struggle with it in your blog, Sarah, as you work to remember what is a cart and what is a horse. It will always be if you spent a life-time taking care of others--either emotionally or physically. I'm guessing your whole family knows that you did. (I started out as the oldest of 8 children.) It sounds like your husband appreciates you getting the brunt of it all--so does mine, when he is thinking straight, he does.

    My path out of this unyielding focus on him was the worst side-effect of A-fib: having to get off all those "effective" arthritis drugs I'd been taking for years. Tylenol just did not do it. Luckily I'd been doing YOGA for once a week for over 30 years, so in May I stepped it up, do it every single day. That increase is working wonders in two ways: stretching does help arthritis a lot and I'm forced to turn my thought inward for, at least, a brief time each day.

    I say "path out of" and of course there is no such thing: my struggle for balance continues as my "honey" has begun radiation. His first cycle of chemo begins next week. I imagine the lack of pain that astounds doctors will eventually not hold; it helps me to remind him (and myself) of our good luck at having all these days without pain.

    Thanks so much for sharing, Sarah--it helps greatly to know some sweet woman out there understands.

    From Joyce, outside Detroit.

    1. Joyce: I found your message earlier....but have just been "wrapped up" and couldn't respond.

      I'm so glad your daughter forwarded my blog to you. I hope your honey is doing well with treatment. Anything connected with the spine just scares me to death.

      I hope you are doing okay with your AFib. I am still on Coumadin (don't see having it stopped anytime soon). I go for lab work about every two weeks, and my blood work is up and down.

      Bob doesn't have lesions but he has terrible back pain from the Compression fractures. It's probably time to have another RFD or RFA. That seems to alleviate some of the pain issues.

      If you are on FB, please request me as a friend. I'm listed as Sarah Walker Gorrell.

      Hugs and prayers.....


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