Caregiver cancer

McCott

My husband died at 73in September 2020, stage 7, after two weeks in a Hospice facility.  I was saddened by his death, but also relieved because keeping him at home until those last two weeks had been a 24/7 ordeal, feasible only with the support of my son and his fiancee who had moved back in to help. We couldn't have a memorial service due to covid but are planning one for next fall, a year after his death.

I had recovered from surgery to repair a burst vertebra caused when my husband fainted due to overdose of diabetes medications (glyburide and tradjenta) and pulled me down.  That was rough, but my spine was 'repaired' with an erector set of metal and cement and I had recovered well before he died.  

 At 74, I was worn out and tired after this past year of surgery and caretaking.  After his death, I slept a lot, but never felt better.  Instead I had increasing weakness and fatigue, difficulty walking up stairs or getting out of a chair.  The new 'baby-doc' to whom I had been assigned -- a 30 something young woman who replaced my retired doctor --  was convinced all this was due to grieving over my husband's death.  I explained to her that with ALZ the grieving started seven years ago with the diagnosis and his death in full stage seven, double incontinence, inability to walk or to talk, was actually a relief on many levels.

After a month or so of "it'll go away. you'll be fine,' she finally began ordering tests and three months after his death, I have been diagnosed with an incurable cancer, multiple myeloma, which I had never even heard of.  There are some treatments, basically chemo, but it will never go away.  So now I have to prepare our son, who was devastated by his father's death, for what will happen to me.  I just hope to live long enough to have a memorial service for my husband next fall.

Why am I posting this?  I don't know, really.  I just seems like the universe has decided to kick me off a cliff, just to show that I was presumptuous in thinking that I would keep living for a while longer. All four of our parents lived to at least 92, and one to 96, including two of his parents who had both colon cancer and open heart surgeries.  I had been "fine" except for sinus problems, but out of the blue I get a cancer that has no known cause and no cure, just like ALZ.  I least I will be aware of what's happening to me, for better and for worse.

Luckily I'm not religious, but even if I was, I've read the Book of Job, and know that there's no use protesting when the Big Foot comes down on you.  Hope your New Year goes better than mine.

ladyzetta

(((Dear McCott))))

I am so sorry to hear this. You are a strong person and you showed that while caring for your DH.   Please don't let that strength you have go you need it now to care for yourself. Please don't let this get you down you need to fight. You may not be religious but please believe in miracles and remember you will be in a lot of prayers. Please keep us updated on your health and how you are feeling. We are here for you. Hugs Zetta 

ladyzetta

I also don't believe in protesting when the Big Foot comes down but sometimes that Big Foot comes down just for a minuet. Sorry if I am overstepping I just felt I needed to include that. Hugs Zetta

Gig Harbor

Don’t lose hope McCott. My friend was diagnosed 5 years ago with multiple myeloma and this past year has been his best year because he has worn a mask and not travelled. He receives his care at the VA and Seattle Cancer Care. He is in remission. Some of the treatments have not been easy but there are new treatments coming out that look very promising. I am sorry that you were not able to have a period of time in which to recover from all the stress of caring for your husband. Life has thrown a lot at you.

Nowhere

Oh, McCott! I’m so sorry. You’ve survived too much to have this thrown at you, too. Or perhaps it’s come on because of all the stress you’ve been through. Life’s not fair at all! Like Gig Harbor commented, please don’t give up. Being unfamiliar with the disease I had to look it up, too. Your son will fight with you, and your support here will, too. Start researching! Please don’t just give up. Although, I know the despair that comes creeping. I care and am counting on you to go the furthest distance possible.  http://myelomasurvival.com/myeloma-blog/multiple-myeloma-why-do-people-beat-the-average-myeloma-life-expectancy-prognosis-improve-your-mulitple-myeloma-survival-rate

60 falcon

Mccott, I'm sorry for the loss of your husband, but even more so for your diagnosis. I also have a diagnosis of an incurable cancer.  Mine is called ALK negative Anaplastic Large Cell Lymphoma.  It's different from yours, but I can probably relate to at least some of what you are feeling.

I'm 56 and have been fighting mine for five years now.  I've had several different kinds of treatments and procedures, and a few real scares along the way.  I can definitely relate with your comment about getting an incurable cancer with no cure, just like Alzheimer's. 

I don't know anything about the cancer you have, but I hope the treatments available to you work as good as they can.  Just like in your years of caregiving for you're husband, you aren't alone in this battle with cancer.

At least now you can focus your time on yourself without having to care for someone else. It beats having to deal with both problems at the same time.. it's hell. I wish you the best.

Beachfan

McCott,

I am sorry to hear of your most recent troubles.  So much in life makes no sense.  You may not be religious, but I am and I am off to bed.  I “Hail Mary” myself to sleep every night.  You may have all tonight's Hail Mary’s.  I hope they bring you some comfort, physically, emotionally, or spiritually.  Stay strong. 

Rick4407

McCott I am at a loss for words and overwhelmed with sadness.  I have always looked for your posts and appreciated them greatly.    Perhaps, we are nationally ending a true nightmare, There is also, it appears, a light at the end of the tunnel for the virus.  I'm not one to pray but hope you can find the strength to fight on.  Rick

Joe C.

McCott, It is so sad to hear your news. I have thought of you over the last few months as I always found wisdom and sometimes a laugh in your post. I wish you strength and courage, but I know you already possess both these qualities. All the best, Joe

Doityourselfer

McCott, I'm sorry you are battling this disease.  I hope for the best for you.

Mint

(((McCott)))

Ed1937

Mary, I am at a loss for words. I'm sorry you now have another battle to fight. Please don't give up the fight. You can do this. Come back to the forum anytime. We're still here for you.

June45

Mary,

I have actually been thinking about you over the past week or so and have been wondering how you have been since the death of your husband. This was not the news I wanted to hear -- I am so sorry this has happened to you.  Please keep in touch with us; there are many here on this forum who care about you.

Jeff86

I am so sorry to hear of your devastating diagnosis—it’s a tremendously challenging issue to deal with for anyone, never mind someone who has experienced the trials and grief of AD caregiving.

I have a friend who was diagnosed with multiple myeloma over 10 years ago, received a stem cell replacement therapy, and has survived and thrived for these many years.  I hope you have the strength and expert care to fight and win this battle.  We are on your side, rooting for you.

Paul&Me

McCott, I have Multiple Myeloma. I was diagnosed after my husband's symptoms began, but before his diagnosis. It's a difficult diagnosis to have, but after the initial period, it got easier. My treatment that reduced the cancer was Revlimid-Velcade-Dexamethasone. Rev. and Dex. are pills and Velcade is a subcutaneous shot. Then I had to be deemed healthy enough to survive a stem cell transplant. If you are also healthy enough, it can give you many years of just living with the disease. Mine was caught before symptoms (something odd on a blood test caused more testing) and I've lived with it for almost 8 years. I've had 2 stem cell transplants and I'm 2 years past the second one. My primary doc once told me, "If you're going to get a weird cancer, this is the one to get. You can live a long time with it." I've heard of 30-year survivors and there are new treatments coming.

Check out Leukemia and Lymphoma Society (lls.org) for information and possible grants to help with costs. There are other organizations that will also reimburse some of your costs. I'll pray for you.

jfkoc

Thank you for posting.

When is "enough is enough"?  One wonders  how much ...how long...why. 

Please find the  best medical care, a Dr (s) who treats the body as well as the soul and please do keep us in your life.

Jo C.

Dear Mary;  I am so very sorry this is happening and am heartened that you came to talk to us, we truly do care.

As already recommended;  finding excellent medical providers that specialize in this and then going with it; but I am fairly sure you are already doing just that.

Please do come here and let us know how you are doing and what is happening.  You are certainly still part of this big elecronic family of caring individuals.

I know you dislike electronic hugs, but what the heck . . .  I am mentally sending you warmest thoughts; know you are being thought of; we will continue to do so and are holding you in our hearts.

J.

Iris L.

Stay strong, McCott!  The community is surrounding you and holding you up!  I pray for you to have the resources you need.  

Iris

janeymack

McCott - I'm so sorry to hear this, but so glad you shared with all of us. You already know the depth of your inner strength, but now you fight for you. It's no surprise that other posters already shared so much medical information and good wishes, so your support system will continue to be here for you. Keeping you in my prayers.

abc123

Crushed

Stay strong. Get good medical care and what , don't give up.  

Best of luck

ElaineD

Dear McCott:

My sister in law was diagnosed with Multiple Myeloma and thought she would be dead very soon.

However she enrolled in clinical trials of monoclonal antibody treatment through the UNC (University of North Carolina) Oncology Department.

She lived for 9 more years, and enjoyed the births of grandchildren, travelled and generally had a good life. 

Of course each case is different, and perhaps monoclonal antibody treatment won't be right for you.

But I urge you to seek a second opinion and treatment at a major university medical center.

In addition I recommend supportive counseling as you enter this new part of your journey.

Love, ElaineD

abc123

5:10 AM

Thinking of you.