trying to cope, loss my husband to cancer

[Christiane]

I just joint this forum, but already I see so many similarities of emotions and thoughts. 

My husband just turned 55 last December, I'm 2 years older than him.  Everyone keeps telling me that he was so young yet, and I agree. 

He was my second husband, my soulmate, and we were married for 21 years.   I had five children from my previous marriage, and he took them in and raised them as his own.  Together we had two more children and he always told everyone that he was the proud father of 7 and grandfather of 10. 

There was never a dull moment in our life.  My husband and I were truck drivers and owner operators.  We drove team across Country. I drove days, he drove nights.  Driving Semi was his passion.  In September of 2019 however, our life changed forever.  My husband was diagnosed with pneumonia that didn't go away with oral antibiotics.  He had to stay in the hospital overnight to get the penicillin through I.V.  A doctor decided to do a cat-scan and they found a fist size tumor in his ribs and immediately preformed a biopsy. 

It took 4 long weeks to get the results because neither his race, nor his age fit the cancer he was diagnosed with.  We certainly never heard of it before, but little did we know that I learned a whole lot about it in the coming years.  My husband had Multiple Myeloma, a non-curable blood cancer.  We were told that the cancer could be maintained, depending on the aggressiveness, and that any treatment was only buying time...A treatment plan was set up but he wasn't allowed to drive a Semi due to the medication he was receiving.  He didn't want to stay at home and he drove with me as a passenger.  We had a family to feed and bills to pay.  A sitting Semi costs a lot of money. 

We were both lost during that time, not knowing what was to come.  Soon after his first treatment he suffered a heart attack.  Another month after that he slipped on ice in our driveway and broke 4 ribs.  We had to sell our Semi and live off our savings for a while.  I became his full time caretaker, he didn't want any stranger coming into the house helping him.  When he was diagnosed he was a strong 6'2 tall man of 220 pounds.  When he passed away he was 122 pounds...

The first round of chemo and radiation seemed to work, but he needed a stem cell transplant.  Then Covid came and everything came to a stand still.  In September of 2020 he received his stem cell transplant and the cancer seemed under control for the first time.  Unfortunately it didn't last very long.  His cancer came back with a vengeance, just when we were planning to go back to work.  After this he received immunotherapy which also only lasted 5 month.  The doctors kept telling us that his Myeloma was very smart.  It seemed to adjust to every chemo he had gotten and fought it off like it was nothing.  

This past year was driving to treatment 3 times a week on a 214-mile round trip every time.  He had his good days and his not so good days.  His health started deteriorating and even though he wanted to give up many times, he kept fighting because neither one of us, nor the kids where ready to say goodbye.  There was always this tiny bit of hope you cling onto.  The whole family sat down last year with him, because he wanted to tell us about his last wishes.  There was a lot of sadness, a lot of pain, but we listened to him.  I had to promise him to never leave him on a ventilator if it should come to that.  He also never wanted to die in a hospital, but at home, with his family.  

Christmas was his favorite time of the year.  If he could have been Santa Clause, living at the north pole, that would have been his dream job... Even though he already was in a lot of pain since last year, he told us that he was proud of us giving him a last Christmas to remember with the whole family.  

Deep down inside I knew that he didn't have much time left, but I kept hoping for a miracle.  I tried to push the thought of him leaving us away by keeping so busy with his care, the house, our kids and grandkids, that I didn't need to think about it.  Making him comfortable, cheering him up, helping relieve his pain was what kept me going like a little "Duracell bunny"...

On February 15th we had another appointment with the oncologist, 107 miles down the road.  He needed to be admitted, his blood pressure wasn't stable and he didn't want to eat anything.  I made him eat chicken soup at home, made him protein shakes so he just had something in his stomach, but it caused him pain.  I visited him every day and stayed as long as I could.  He slept most of the time.  The doctor then told us that there was a brand new treatment that was just released by the FDA and it could help my husband.  Even though the doctor explained all the side effects, my husband wanted to try it.  To me it didn't feel right.  It was the first time a treatment option didn't sit right with me.  I talked to my husband about it, told him what I thought, but he told me that this is the last treatment he will ever try.  It would ether work, or it wouldn't.  The whole family visited him the following day to wish him good luck and planning the next camping trip and cookout together.  He seemed happy and relaxed, the opposite of my feelings, but I didn't let him see it.  It was a great feeling to see him smile.  He received his first dose of the treatment after we all had left.  

The next morning, I got kind of anxious because he didn't call me yet from his cell phone.  I tried calling him but didn't get a response.  I called the hospital multiple times until I finally was able to speak to a nurse.  The treatment had caused him to get brain toxicity.  They told me that they are giving him medication to eliminate it, but that he was sleeping right now.  I called my kids and our oldest daughter drove down to the hospital with me.  The hospital only allowed two visitors at that point so nobody else could come.  

When we saw my husband, he looked terrible.  He was hooked on a feeding tube and didn't recognize us.  He had hallucinations and saw things and people in the room that were not there.  The doctor came in and told me that due to the brain toxicity, they are invoking my power of attorney because right now, my husband wasn't able to make his own decisions anymore.  I sat down with him on his bed and held his hand until he relaxed and fell asleep.  The doctor came back and told me that I had to sign documents about resuscitation in case his heart stops and putting him on a ventilator, in case he stops breathing.  I felt overwhelmed and put on the spot.  I know my husband trusted me with the decision he made, to make me his power of attorney when he was first diagnosed.  But I never thought that it would come to this.   

I've learned a lot about Multiple Myeloma in the past 4 years.  This cancer makes the bones really brittle.  Before I made a decision and signed any paperwork, I asked the doctor as to how they would resuscitate him.  I was told that they would push down on his chest.  I then asked him that since his bones where so brittle, wouldn't that take a chance on breaking some ribs?  The doctor told me that in my husband's case, pushing down on his rib cage to resuscitate him, would, with most certainty, break his whole rib cage. 

I signed the paperwork of no resuscitation, in case his heart stopped.  It was the hardest thing I ever had to do and don't wish upon anyone.  Thank god my daughter was there to support me.  I did however tell them that he wanted to die at home and that we will be looking to have him home in home hospice.   We stayed with him as long as we could and kept telling him that we were going to bring him home as soon as we could.  Due to his condition, he would have had to be transported by ambulance.  All this needed to be arranged.  We had to leave at 8 PM, per the rules of the hospital.  At the same time it started snowing outside and Wisconsin was expecting a 2 day snow storm from Feb. 21st at night until Feb.24. with accumulations up to 13 inches.

We made it home safely before all the heavy snow started to fall.  I called the nurse one more time before I went to bed to see how my husband was doing and she told me that he was sleeping peacefully and doing alright.  

At 3 AM in the morning of February 22nd I received a phone call from the hospital.  They told me that my husbands breathing became real shallow, that he developed pneumonia and that he had an allergic reaction to his fentanyl patch.  They were giving him a dose of Narcan, hoping to offset the overdose.  Again they asked me if they could resuscitate him, in case his heart stopped.  I told them that I already had signed the paperwork just a few hours prior when I was there to not resuscitate and they said that they would call me back.  

I called my oldest daughter and she told me to get ready.  She managed everything, because at this point, I felt hurt, helpless, lost and (even though I had all the support of my children) alone.  I felt alone because my husband and I always made decisions together and there I was, having to decide on his well being, on his life.  My daughter lives 35 minutes away from me, it took her almost 2 hours to get to our house due to the snow storm.  She had already booked a hotel room down the road from the hospital in case we needed to stay there longer due to the weather.  The older boys stayed home to take care of all the grandkids.  All our daughters and our youngest son packed our bags and headed down to the hospital.  It took us 4 hours.  The roads where snow and ice covered and cars and Semis where in the ditch left and right.  

On our way down I received a call from a doctor in the ICU.  I told him that I was bringing 4 of my kids with me and hoped that we were all allowed to come up to my husband.  He explained to me that my husband was on the ventilator in the ICU.  If he wouldn't have been put on the ventilator, he would have died within one hour.  He also told me that since we're coming to be there for an "end of life event", he would make sure that we wouldn't get any problems from security coming up together.  

When we got to his room he was hooked on the ventilator and I.V.s with fluids and medication in it.  The doctor came in shortly after we arrived, and he was really nice and understanding to our/my husband's wishes.  My husbands cancer cells had advanced to his brain and were multiplying by the thousands.  There was no chemo, no treatment strong enough to stop any of that.  

In the past 3 years into my husband's disease, his hands were never warm.  Even the day before, when I was sitting with him, holding his hands they were cold.  But there in the ICU, with him hooked up on the ventilator, his hands were warm.  Everybody was crying once the doctor left the room.  He told us that he will get the paperwork together and that the nurses would home in to unhook my husband from the ventilator.  We all sat around his bed talking to him, holding his hands.  He was still sedated for the ventilator.  

When the nurses came in and unhooked him from everything, but a new IV of morphine to help with his breathing, he opened his eyes and a tear went down his cheek as if to say "thank you"... He was breathing on his own, but he couldn't talk anymore.  He squeezed our hands and we stayed with him to his last breath.  

The nurses told us that this was the most peaceful they have seen someone go in a very long time.  We were able to stay with him as long as we needed and wanted after he passed.  We all needed that.  We all said our goodbyes, we all cried, we all were relieved that he was without pain for the first time in years.

We stayed the night in the hotel and drove back home through the still ongoing snowstorm, but we made it home safe...

My kids have been a great help with everything, I feel very blessed.  Yet, I am still questioning myself as if this was really what he wanted, if this was the right decision.  He's gone and I feel lost.  It hasn't really stopped snowing up here.  Tomorrow we're driving to the funeral home 2 hours away from us to pick up his ashes and bring him home.  We have an urn with wolf statues on it that he picked out which will stay on the mantel of our fireplace, surrounded by his collection of wolf statues.

The rest of his ashes will get spread at his favorite hunting grounds where him and his deceased brother had some good times together.  And another part of his ashes will be made into jewelry for each of his kids and myself as they wanted, and he agreed to.  We will have a celebration of his life on March 25th. for our neighbors and friends who were shocked to hear the news of his passing.

The family however will say their final goodbyes on father's day weekend.  Father's Day weekend was his big weekend.  Every year the whole family went camping together and sitting around the fire with an amazing cookout.  We have other family members join us for this weekend to say our final goodbyes, give out the jewelry with his ashes in it and celebrate the heroic fight he fought.

He always said that one way or another he will beat this cancer.  Even if it means to kill it when he dies... Well, he beat the cancer..

I'm sorry for writing all of this, but I needed to say what happened.  My kids, were there, we experienced the same thing, they know his story, they know our story, but I just felt like I needed to tell his story to others... I know very well that we're not the only ones.  There are millions of families out there dealing with this disease and the aftermath every single day.    

I'll be taking one step at a time, every day to make him proud.  I'm figuring out what to do with myself.  All of a sudden I don't have to spend half the week in the hospital or take care of him and I'm lost...  

Thank you for reading his story...god bless

 

[AJ4]

Thank you for sharing that with us.  Even thought is was a different cancer I recognize so many of the heartbreaks along the way from my own life and my husband's illness.   You're not alone with us here to listen.  

[Sparky1]

Christiane, I am so deeply sorry for your loss. I'm wiping away tears as I write. Cancer is such an evil disease that creeps up on a person unawares. My wife  died from adrenal cancer which spread to practically her whole body, and it was the toughest thing to go through in my whole life. I'm still shocked at how fast she went after the diagnosis.  My second cousin died a couple of months ago from complications of multiple myeloma, he got blood clots. 49 years old with 4 young kids.

 We're all  here for you to offer support as best we can. God bless you.

[movingon]

Thank you for sharing his story. That was a difficult read for me, I empathize with you in so many ways - my husband died of liver cancer in December. I am so sorry for the long difficult struggle your husband had, with you forever by his side. I know there are so many different cancers but I never imagined just how heartwrenching and horrific the ravages to the human body can be. I know how you feel about all of a sudden losing your purpose. I was only his caregiver for the last few months when he became bedridden, that was a most difficult, busy, stressful time, nurses here every day, yes, the do not resuscitate order, in my husband's case, the medical assistance in dying option...all of it, nightmare. Once he was gone, the stillness, the emptiness, the nothing to do...that was deafening. I don't know where my mind was at the end but I was happy he was here, he never left the bed, barely ate, but he was here. Here for me to take care of as best I could. 

It's taken time to adjust to the "nothingness" and I keep busy with chores and walking twice a day, I look for anything to distract me because I cannot sit on the couch and think. I come here to this group alot, all the stories are sad but all the people are incredible and listening to them keeps me from feeling utterly alone. Hearing stories such as yours, it was hard but it was beautiful. You brought him, yourself and your family to life. There are so many people here who will help you through this. I am glad you are here.

[Deborah_M]

2 hours ago, Christiane said:

 

I'll be taking one step at a time, every day to make him proud.  I'm figuring out what to do with myself.  All of a sudden I don't have to spend half the week in the hospital or take care of him and I'm lost...  

Thank you for reading his story...god bless

 

Dear Christiane: I am so sorry for your lost.  Everything you and your family went through was heartbreaking to read.  My eyes are clouded with tears right now and I recount my own loss.  I was caregiver to my husband for 6 years, and every year got worse until the end.  Your husband I would say was the bravest man you ever knew.  I said the same thing about my husband. I don't want to make this about what I went through.  Maybe some other time.  This is about you and your grief right now.  I wish there was more I could say to you that would ease your grief but I have not found it yet myself. Just know that   We will be here for you...I hope we are able to comfort you in some small way.  You have my prayers for you and your family.  We will keep watch over you.  God Bless you and your family. ~ Deborah_M

[RichS]

Christiane:  All of us here are very sorry for your loss and all of your suffering along the way. You’ve discovered a great gift with the board. WELCOME!!

[KayC]

14 hours ago, Christiane said:

He squeezed our hands and we stayed with him to his last breath. 

I am so sorry for your loss but also so thankful for that squeeze...he knew you were there and was communicating with you.  The hardest day of the world is the day our husband died, followed by many more hard days, esp. when the shock wears off, it's like you're on autopilot and are living in a different realm, unaware of the world around you.  I remember wondering how the sun could go on shining without him in it.  

I am so sorry you are going through all of this.

Welcome to our site, it's like a family, from all over the world, a safe place where people don't say the stupid cliches and there's always someone here who "gets it" and understands.  A place where we care about each other.

Grief Process

This is not a one-size-fits-all, what strikes us one day will be different a few months/years from now, so please save/print this for reference!

I want to share an article I wrote of the things I've found helpful over the years, in the hopes something will be of help to you either now or on down the road.

TIPS TO MAKE YOUR WAY THROUGH GRIEF

There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this.  I do want to give you some pointers though, of some things I've learned on my journey.

• Take one day at a time.  The Bible says each day has enough trouble of its own, I've found that to be true, so don't bite off more than you can chew.  It can be challenging enough just to tackle today.  I tell myself, I only have to get through today.  Then I get up tomorrow and do it all over again.  To think about the "rest of my life" invites anxiety.
• Don't be afraid, grief may not end but it evolves.  The intensity lessens eventually.
• Visit your doctor.  Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks.  They need to know these things in order to help you through it...this is all part of grief.
• Suicidal thoughts are common in early grief.  If they're reoccurring, call a suicide hotline.  I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived.  Back to taking a day at a time.  Suicide Hotline - Call 1-800-273-8255 or www.crisis textline.org or US and Canada: text 741741 UK: text 85258 | Ireland: text 50808
• Give yourself permission to smile.  It is not our grief that binds us to them, but our love, and that continues still.
• Try not to isolate too much.  
• There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself.  We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it!  Some people set aside time every day to grieve.  I didn't have to, it searched and found me!
• Self-care is extremely important, more so than ever.  That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care.  You'll need it more than ever.
• Recognize that your doctor isn't trained in grief, find a professional grief counselor that is.  We need help finding ourselves through this maze of grief, knowing where to start, etc.  They have not only the knowledge, but the resources.
• In time, consider a grief support group.  If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". 
• Be patient, give yourself time.  There's no hurry or timetable about cleaning out belongings, etc.  They can wait, you can take a year, ten years, or never deal with it.  It's okay, it's what YOU are comfortable with that matters.  
• Know that what we are comfortable with may change from time to time.  That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse.  Finally, they were up to stay.
• Consider a pet.  Not everyone is a pet fan, but I've found that my dog helps immensely.  It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him.  Besides, they're known to relieve stress.  Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage.
• Make yourself get out now and then.  You may not feel interest in anything, things that interested you before seem to feel flat now.  That's normal.  Push yourself out of your comfort zone just a wee bit now and then.  Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first.  You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it.  If I waited until I had someone to do things with I'd be stuck at home a lot.
• Keep coming here.  We've been through it and we're all going through this together.
• Look for joy in every day.  It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T.  It teaches you to live in the present and appreciate fully.  You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it.  It's an art that takes practice and is life changing if you continue it.
• Eventually consider volunteering.  It helps us when we're outward focused, it's a win/win.

(((hugs)))  Praying for you today.

 

[Christiane]

I want to thank each and every one of you for your kind words and support.  It really helps to read and write about the one thing we all have in common.  Every one's story is different, but yet, every one's story has the same effect on our lives. 

Today we're going to the funeral home and picking up his ashes to finally bring him home.  

Yesterday was pretty difficult for me because it was exactly 4 weeks prior, also on a Wednesday, also on a 15th. that I had to bring him to his appointment and had to leave him there.  The scene of him walking in front of me to the truck that morning just kept playing in my head over and over again.  

Every morning his side of the bed is empty and untouched.  This morning I had to realize that it wasn't really me (who he claimed) that messed up the blankets every night, it was actually him.  This "enlightenment" actually made me smile a bit. Due to a routine, I guess you can call it, I walked to the living room to see if he was sitting in his recliner to ask him if he wanted me to get him anything, just to find his recliner empty.   Sometimes he had those moments when he woke up before me due to pain and made his way into the living room by himself.  It always scared me because I was scared that he could fall and hurt himself.  But I also had to learn and realize that he wasn't a Baby, a newborn who wasn't aware of the risks.  He was a grown man who didn't want to feel or get treated like a baby and I gave him that freedom when he needed it, or he just took it by himself to proof to himself that he could still do something on his own.

It's the little things like that in our every day life that spark those memories and leave plain emptiness behind.

[KayC]

17 hours ago, Gator M said:

What will you do when things settle?

It's much too soon to know, take one day at a time.  For now it's enough to get up and dressed in the morning (or not), eat something, drink some water.   Hang in there and come here to read or post.  We want to be here for you.

[Christiane]

Gator Mike:

I am so sorry for your loss, the ordeal and the pain you and your family had- and are going through.  I can't tell you how many MM patients I have met throughout the years, while I was in the hospital with my husband, who were misdiagnosed for years, especially woman.  

When my husband was diagnosed, he was already in stage 3 with a fist sized tumor in his chest.  We were told that MM was a rare blood cancer, but the more I've learned about it, the more people I've met with MM the more common this cancer seemed to become. 

As I said in my post, my husband and I were team truck drivers, I drove days, he drove nights.  After his diagnosis, I tried to learn as much as I could about this disease and, looking back, all the signs of MM were there 5 years prior to his diagnosis.  One example was his reoccurring pneumonia.  He had pneumonia 2 - 3 times a year.  Every time they took an x-ray.  I asked the oncologist: based on your knowledge of his cancer and the size of his tumor in his chest, how long would it have taken for the tumor to grow to the size of a fist?  His answer was: about 3 - 4 years.  My next question was: every time he was diagnosed with pneumonia an x-ray of his whole chest was taken.  How on earth was a growing tumor, right next to his lungs missed on his x-rays, especially the past two years prior to his diagnosis?  He couldn't answer this question.  

I also can relate to your insurance nightmare.  We had our own health insurance due to us being self-employed and after thousands of dollars of copay his oncologist wanted to give him a special chemo treatment right away to stop the light chains from multiplying.  Our insurance told the oncologist that they wouldn't pay for that treatment and told the oncologist what treatment they recommended.  Our oncologist was outraged about the insurance and put my husband on Medicare and Medicaid right away through the hospital's social services.  He was approved for the treatment right away.  Without that treatment, way at the beginning with stage three, he would have not survived another month.

You asked me what I will do when things settle.  That's a very good question.  From when my husband was first diagnosed until the end, I was the one who was involved with everything.  My husband sometimes got mad at me for doing a lot of research, he was a "doctor trusting" kind.  Me on the other hand wanted to know everything there was to know about his cancer.  And I totally understood where my husband was coming from.  It was hard enough for him to stay positive, to fight like there is no tomorrow, he had a lot of things on his plate.  I did all my research without him knowing about it, but due to doing so, I was always able to ask questions when he received new treatment, put my two cents in and make sure he was taken care of.  For every appointment, no matter if it was for a checkup or labs we had to go through every medication he was taking, even if the visits were 2 days apart.  My husband had no clue about the meds he was taking and always told the nurse or the doctor to ask his "legal drug dealer", referring to me, and if it wasn't for me, he wouldn't know what to take at what time, nor what it was for.  I had to make sure he took his pills at the given time, otherwise he wouldn't have taken them at all.  He always said that if it wasn't for me, he would have been dead a long time ago.

You and your wife didn't have any time to deal with MM because like so many others, they have been misdiagnosed for such a long time.  I remember when we got told what it was, especially that it was incurable, it felt like the rug was pulled out from under our feet from one minute to the next and our whole life was falling apart.  At that point you don't really know what to think anymore because there are so many things rushing through your mind all at once, while the main thing is always: how to keep your loved one from dying, how to keep your loved one from pain, how to help with everything there is going on while your world keeps crashing around you.  Yet at this point, at the same time, life outside of your family goes on like nothing happened.  

For us, like for many other families who are hit with a diagnosis like that, not just cancer, but any other life-threatening disease that needs constant care, there really is no help out there, especially financially.  

I don't know how it is in other States, but when someone is diagnosed with cancer up here, the social services of the hospital will meet up with the patient and their families to see if there is any way they can help.  Their help mainly consist of finding outside resources that could help with different things like co-pays, like gas cards, like transportation services available and things like that.  Financial help from private charities are mostly dependent on how common a cancer is.  We were given a list of two charities from our State that could, potentially help with a one time in a lifetime help of $100.  There are many more charities available for more common cancers, but again many times there is age restriction, cancer restriction, what kind of cell cancer someone has and so many other hurdles someone has to jump over to even qualify.  

My husband and I were fortunate enough to keep ourselves afloat for 5 months without any income.  We used up all our savings that we had, that were supposed to go to the renovation of our house, we needed a new roof, new insulation and things like that. Our renovation wasn't as important anymore once he was diagnosed, but nevertheless, I have seen people struggle so badly it was heartbreaking.  Savings go quicker than they were accumulated and then you're standing in front of the shards of your life. 

We were offered a program where I could get paid taking care of my husband, like a nurse or an outside caretaker would.  The catch of that program was a magic word called "Real Estate Recovery".  Meaning, when someone owns real estate and they pay a family member for taking care of a loved one, the real estate they own goes to the State once they pass away, because they were paying for the care.  This was a big no, no for us.  We couldn't possibly give up our home after he was gone.  My husband was furious about it, but then I heard more and more people in our community had done this out of necessity and after the loved one passed, had to leave their home.  My husband and I found this very appalling.  

Back then I was thinking of starting a nonprofit for cancer patients, regardless of what type of cancer someone had, regardless of age, regardless of a single person or a whole family.  It takes a minimum of six months before someone can receive temporary social security after the application.  And even then, it depends what kind of cancer someone has.  Cancer treatments are harsh and not everyone can keep working through the treatment.  Many people, many families face financial ruin, because the sad truth is, that we want to spend as much time as we possibly can with our loved one, but the outside world won't let us because the bills don't stop coming and we have to leave this care in other people's hands.  

I tried to take over all the financial issues.  A patient who is burdened with financial issues can't be expected to get better.  They need all their strength to fight a disease that's eating them up inside. They shouldn't have to worry about if the mortgage can get paid, if the power bill can get paid, if they have to get rid of the cell phone to have extra money for gas to their appointments.  I saw how depressed my husband had gotten about our finances when he was just diagnosed.  I took it all into my hands and only had him sign documents when he really needed to and told him that he didn't have to worry about any of this.  

I'm working on getting all the things I need together to start a nonprofit.  It will take me a while, but it will keep me busy, knowing I will do it for a good cause.  On the other hand, I feel like I will keep myself so busy, just to push the loss of my husband further along and just to not having to think about it.  I will try to work through everything plus I have my kids and grandkids who always were a part of our lives and went through the same pains we did.  

I wish you all the strength you can get to cope, because I think that's all we're trying to do right now.  I don't know how long it will take; everyone is different.  I'm also refinishing furniture on the side which I had been doing since my husband was diagnosed, because the temporary disability he was receiving, was barely enough to cover the mortgage.  I was able to work from home and was always with him, which helped a lot in our case.  

I want to thank you for your heartfelt prayers, it eases everything a little bit but as my husband would say: "take it slow sweetheart, right now you don't seem to see the difference between your head and your behind", which kind of, pretty much sums it up

[KayC]

18 hours ago, Christiane said:

My husband had no clue about the meds he was taking and always told the nurse or the doctor to ask his "legal drug dealer", referring to me, and if it wasn't for me, he wouldn't know what to take at what time, nor what it was for.

I love this!  Your husband's sense of humor....

Thank God he had you.  What do those who like John, do, when they get cancer and their spouse is already gone?  

[I miss you so much]

Thanks so much for sharing your story. I can feel your pain, but most of all, I can feel your deep love for your husband.

I also think your husband has been very lucky having you. Your way of approaching his illness, your strenght,  your project of creating a "non profit organisation". I read your words and I really admire you and imagine how proud your husband must have been... maybe how proud he is...

 

 

[DancesWithWolves]

I am sitting here in tears after reading your family's story.  We only went through five months of treatment, but I do understand how you could be questioning so many choices.  The what-ifs get me often, but be gracious to yourself.  You did the best you could under the circumstances and absolutely acted with love and hope in every decision and action.  It sounds like you have a very strong and supportive family and I hope that you all find a way to move forward together.  This site is a wonderful resource of care and experience.  Thank you  so much for sharing.

[foreverhis]

On 3/15/2023 at 2:13 PM, Christiane said:

I signed the paperwork of no resuscitation, in case his heart stopped.  It was the hardest thing I ever had to do and don't wish upon anyone. 

My heart is simply breaking for you right now because I know that feeling all too well.  In fact, I had the same discussion with the doctors about my John's DNR regarding how damaging it is to fragile cancer patients, the pain it would cause, and the futile reality of the outcome.  In fact, I second-guessed myself so much that I very nearly rescinded it.  Fortunately, our internist had signed as primary and told me in no uncertain terms that the worst thing I could do would be to put John through more.  He'd been our family doctor for 20 years at that point, so I listened (while sobbing).

As well, once I finally realized that John didn't need me to "cheer him on" for the next treatment, but to simply ask, "Honey, do you want to go home?" and arranged for home hospice to start Monday morning, he didn't make it home.  Over Sunday night, his body started to fail.  I had planned to go home to get everything ready, but he said no and so I stayed overnight again.  This was pre-COVID and summer time (and besides, we live in a temperate climate, so that's not usually an issue anyway).  It's to my everlasting regret, which used to be guilt, but has softened, that I didn't ask him sooner.  They moved us to a huge private room with floor to ceiling windows looking out onto his favorite courtyard.  And how sad it is that he'd spent enough time in our small local hospital to have a favorite.  So at least I was able to be with him in the quiet and peace away from everything and with no more IV lines and tubes and machines and noise.

On 3/15/2023 at 2:13 PM, Christiane said:

When the nurses came in and unhooked him from everything, but a new IV of morphine to help with his breathing, he opened his eyes and a tear went down his cheek as if to say "thank you"... He was breathing on his own, but he couldn't talk anymore.  He squeezed our hands and we stayed with him to his last breath.  

The nurses told us that this was the most peaceful they have seen someone go in a very long time.  We were able to stay with him as long as we needed and wanted after he passed.  We all needed that.  We all said our goodbyes, we all cried, we all were relieved that he was without pain for the first time in years.

It's so hard, isn't it, to know you've done the right thing, even as your heart is shattering into a million pieces?  There were times in those last few hours when I had to look away because for some reason, I told myself that if I didn't see his last breath, then he'd still be breathing.  But I steeled myself to look back each time and so yes, I knew when he left us.  It was just me, which I think is what he really wanted.  Our daughter and granddaughter live a thousand miles away and had just visited 10 days before, so they weren't able to be there.  But I did get our daughter on speaker phone early in the day so she could talk to her daddy one last time.  He really couldn't talk by then and was drifting in and out, but I know he heard her and I believe it comforted him.

When I finally was able to call and tell the nurses station to send someone, all I could do was keep holding him and saying, "He's warm.  He's still so warm." over and over again.  They let me stay until the funeral home people arrived.  Even then, I flew back to him to kiss him and tell him I love him and that I'm so sorry.

I feel so much for you right now because I have walked that mile in your shoes.((HUGS))

[Christiane]

1 hour ago, foreverhis said:

When I finally was able to call and tell the nurses station to send someone, all I could do was keep holding him and saying, "He's warm.  He's still so warm." over and over again.

That is exactly what we were feeling, he was so warm, and to us it meant so much because for the past two years, with all the treatments he was receiving his hands were always so cold.   I can relate to you so much and it really helps to hear that we're not alone with our experiences of loss and grief.  

I've been reading through many of the posts.  Seeing how many heartbreaking stories there are, especially with cancer and MM.  I showed my daughters some of them and looking back, we now see how fortunate we really have been to have had him around for 4 years after being diagnosed with stage 3.  There is nothing higher in MM when it comes to the stages of the cancer, the next one would be the end stage.  There are so many people out there that didn't get this chance and to me that's even more painful.

About an hour before my husband had passed, one of my daughters who couldn't be with us called.  We had her on speaker and she had asked us to put the phone by his ear.  She told him that she was expecting a baby and he was going to be a grandpa again.  We were all very happy about that, and sad at the same time, because my husband and the rest of the family had been hoping for a miracle.  She had a miscarriage last year which was devastating for the whole family.  She had just found out about the pregnancy from a phone call from her dr. and wanted him to know before he went on his journey.  

Three days after he passed our daughter had another miscarriage, she wasn't as far along as the first time, but the doctors said that it could have been because of all the stress, pain and grief she was-, and is still going through.  It's been a rough February and March for us so far and we are hoping and praying that things will get better soon.  

For the past few weeks, I had my husband's backpack from the hospital just sitting in our bedroom after I brought it home.  I couldn't get myself to open it since he had passed.  So yesterday I decided to just wash everything again and when I was putting it away, I opened another drawer of his dresser that I usually never put anything in because it's clothes he didn't really fit in anymore.  In the drawer was a bag with our daughter's name written on it and a card from him to her, along with three newborn outfits that he had bought for her last year already but was never able to give to her.  I had totally forgotten about that.  Now I'm sitting here bawling my eyes out because I still can't give it to her.  I will hold on to it until she will finally have that joyful moment, she's so longing for, of becoming a mom.  

Things will get better...

[foreverhis]

5 hours ago, Christiane said:

For the past few weeks, I had my husband's backpack from the hospital just sitting in our bedroom after I brought it home.  I couldn't get myself to open it since he had passed. 

I kind of did the same.  I hung his backpack up on his hook by the front door, though I went through and got rid of everything related to his cancer first.  I did that with the whole house.   Eventually, I went through it, removed things that didn't matter, kept things that did (putting them right back in there), and moved it to the back door hooks because I needed the space up front.  It's still there and probably always will be.

5 hours ago, Christiane said:

In the drawer was a bag with our daughter's name written on it and a card from him to her, along with three newborn outfits that he had bought for her last year already but was never able to give to her.  I had totally forgotten about that.  Now I'm sitting here bawling my eyes out because I still can't give it to her.  I will hold on to it until she will finally have that joyful moment, she's so longing for, of becoming a mom.  

Oh, that is so tragic.  Of course it affected you like it did.  How could it be otherwise?  One day, down the road, you will be able to give her that final gift from her father and it will mean more to her than all the gold in the world.  You'll all cry, that's a given, but those will be bittersweet tears, not just the bitter ones they are today.

5 hours ago, Christiane said:

Things will get better...

Yes, they will, though "better" is such a relative term and very personal to each of us.  Grief does not stay the same; it evolves and changes as we take steps, often tiny ones, forward on this journey.  For me, the unbearable weight of it has lightened as I've been able to make it part of my life and our story, rather than the all-and-everything it was for the first 2 years or so.  For the first many months, more than a year and closer to 2 years, I couldn't imagine that I'd ever feel any sort of happiness.  As I approach 5 years this summer, I can honestly say that I have found some. It's a different, "smaller" happiness to be sure, but it's there now.  And I no longer feel that every smile or laugh is a betrayal of John's love, life, and death.

I truly hate the "He'd want you to be happy" nonsense because the only response I have to that is, "No (insert-swear-word-here), idiot.  You think you know him better than I do?" because he'd also know that I couldn't possibly be happy for a long time and that I'd never be happy in the same way.  The same would have been true for him.

Time doesn't "heal," but it does mend us in some ways.  It helps us weave together the pain and loss and grief with our love and memories and hope.

You can be sure that the members here will hold you and your family in their hearts and prayers.

[KayC]

12 hours ago, Christiane said:

Now I'm sitting here bawling my eyes out because I still can't give it to her.

I am so sorry.  My daughter lost two, then her husband left her, his excuse?  "I just don't think she can have kids." What?!!  So LEAVE her???  They were married 13 years.  Now she's 40 so it won't likely happen.   And she was born to be a mom.
I am so sorry for your daughter's losses, yet it's so sweet that your husband thought of her and I'm glad you're saving it for the day it happens.  It will mean a great deal to her.

[RichS]

7 hours ago, foreverhis said:

Grief does not stay the same; it evolves and changes as we take steps, often tiny ones, forward on this journey.  For me, the unbearable weight of it has lightened as I've been able to make it part of my life and our story, rather than the all-and-everything it was for the first 2 years or so.  For the first many months, more than a year and closer to 2 years, I couldn't imagine that I'd ever feel any sort of happiness.  As I approach 5 years this summer, I can honestly say that I have found some.

For me, finding happiness down the road will be my challenge. I kind of feel "stuck" moving forward. I'm not regressing, but neither do I feel that I expect any changes in the way that I feel or look at life these days. Indifference towards most things seems to be the uniform that I'm wearing these days. You've been on this journey a lot longer than me, so I can't say that somewhere down the road I might not look at life a little differently, in a positive way. Also, if it does happen I shouldn't expect that the time table for experiencing some happiness should be the same as yours; or anyone else's for that matter. I've learned a lot in the past 7 months; and I have the feeling that I'm not anyway near done yet.

[Wavesnsky]

@Christiane Like your husband my Suzy was misdiagnosed with MM. During the spring and summer while she was gardening she was having a lot of pain in her lower back and hips. Her doctor was saying it was probably osteoporosis and she should do physical therapy. Her doctor also had her start taking ibuprofen 800 to help with the pain. This was in the summer of 2021. She started doing the physical therapy but it wasn’t helping. She was asking her doctor for a MRI, she knew something wasn’t right. Her doctor kept saying to give the therapy some time. At the end of August I was going back home for a family reunion and she didn’t go because she said she didn’t think she could set in a car that long and she had another Dr appointment. The Dr appointment still was inconclusive and she was told to continue with physical therapy.

We had both always been active. She was an athlete in high school and college. Most of her working years were as a PE teacher. Our first extended date, 23 years earlier, was spent hiking and backpacking in Rocky Mountain National Park. The highlight was we climbed Longs Peak. 

Your first thought is that this is just a part of getting older and our bodies aren’t as strong as they once were and it takes longer to recover if you have strained something. She kept feeling worse and the pain kept increasing. On October 18, she woke up in the morning with her heart beating rapidly. We knew something wasn’t right. We went to the emergency room. Her calcium was 17 and her creatinine was 3.2 and her kidneys were failing. That was the first time that the word cancer had been mentioned as a possibility.  She was admitted to the hospital. They did a bone biopsy and in a few days it was confirmed to be MM stage 3 with a gain of 1q (high risk).  An MRI also confirmed 5 fractured vertebrae in her back. They got her stabilized and her kidneys came back on line. She came home in 10 days and began chemotherapy. She had a procedure done on her back to relieve the pain and it helped.

It was about this time that, in this time of extreme turmoil,  that I knew the only real control I had was to trust in God and trust his plan no matter what. It doesn’t mean you don’t hope and pray and try everything. It means you just give it to him and accept the outcome no matter what because his plan is perfect even if you can’t see it or figure it out. The great thing is my wife lived the Lord and knew he was her savior. She studied the Bible daily.

Then began the chemo and radiation and trips to different hospitals. It was a whirlwind of nonstop activity. Many treatment lines would start start to work but then usually after 4-6 weeks would fail. You would hope and then have your hope shattered. You would read about the people who have lived with it for years and that was her hope to see her grandkids grow up. That was her main goal.

I got where I could read the labs about as good as the Dr’s. Many sleepless nights sitting in the chair reading about MM trying to educate myself. After the different failures and in hospital chemo it was time for another hospital and the stem cell transplant. That was in June of 22. It did get her to remission and again we were hopeful.  She was hoping to get years from this, it was not to be. The cancer came back again. By September she was out of remission. 
 

In October she was still feeling pretty good so we took a quick trip to Florida to see her oldest son and the 3 grandkids down there. We were both so grateful for the time we got to spend with them.
 

Another hospital in December and a T cell collection for CAR T therapy. Then back to our hospital for another round of in hospital chemo to try to hold the cancer at bay until the T cells had been modified. While in the hospital we learned that the T cell modification in the lab had failed. 
 

Her health began to deteriorate in December, she got pneumonia but was able to come home December 22. It was our last Christmas . She was back in the hospital on Jan 3 with kidneys that were failing.  Another surgery  and they were doing better. She came home on Jan. 13. She was tired of hospitals and so was I. In the meantime we were working with our oncologist about Teclistimab the new FDA approved drug.  So it was back to the hospital on Jan 27th. She was not doing well but she was adamant to give it a try. Her cognitive ability had slipped some, because of the high calcium in her blood, but she wasn’t bad. The oncologist wanted to give it a day to try to get it down and maybe have her cognitive ability improve some. I spent the night with her.  On Jan 28th I called her son in Chicago and told he and his wife she wasn’t doing good and they should probably come see her. My sons and their wives were there also. We had a good day visiting. It was a blessing. She got the first dose of Teclistimab at 4pm.  I left that night with her son and daughter-in-law  to come back to our house. At 6am I got a call from her oncologist that said the hospital had called him and said she had tried to get out of bed to use the bathroom and had fell and hit her head. A CT scan confirmed that she had bleeding on the brain because of her low platelets being unable to clot the blood. The neurosurgeon thought that he probably couldn’t stop the bleeding even if he found it. He thought the chance of success would be very low. She had an advanced directive not to be resuscitated. We made our decision based on her wishes not to continue. She was not responsive. We decided the best was to make her comfortable. We all spent the day with her holding her hands and talking about all the great times and memories we had. I spent the night with her and to look at her vitals you would have thought they were from a healthy person. Heart rate, BP, respiration, O2. Everything was all in line all night long. About 8:30 in the morning out of nowhere her heart rate went from 80 to 195 beats a minute. At about the same time an believable sense of peace came over the room. To this day I can’t really find words to describe it. There was no sadness. I was talking to her and I was saying are you getting this, can you feel this? It was unmistakable. It was true peace and comfort I was feeling. It was a gift from God.  God knows what our needs are. I told her it was ok to go.  It stayed that way for over an hour. I was holding her had and I could feel her pulse. It gradually started to come down. It just kept getting slower until it was gone. I held her hand until Jesus came and took the other one and led her home. Looking back I believe when her heart rate spiked is when the angels were coming and she was excited.

I usually am not this wordy as a person in my posts. I just wanted to let you know her story. The wonderful person she was in her life and her departure from this life. She was the most tender and toughest person I have ever known. I thank God all the time for allowing me to spend 23 years with his wonderful creation. I am truly blessed. 
 

So now to try to go on and find my purpose after her. She was my purpose. I’m turning all my attention to my family and grand kids. I will take her with me to all their important life events and keep her memory alive in them. 

 

 

 

[Christiane]

@Wavesnsky Thank you for sharing your story.  It seems so similar to mine/ours.  It's been 2 months and 2 days that he left, and today is one of those days when I constantly keep thinking of him.  You were blessed to have this strong faith with your wife.  It's beautiful that your faith can give you such strength.  My husband had his first dose of Teclistimab on Feb.17th.  He got brain toxicity from it, but they were giving something for that and it started getting a little better.

As you said, there is always this tiny bit of hope that never lets you see the downsides and we keep fighting along our loved ones for a better tomorrow.  

I had to request my husband's medical records because I wanted to see what exactly happened between the time I left and the time they called me to give him Narcan.  Sad thing is, that he didn't die of the MM.  He was overdosed with Fentanyl by accident by the hospital.  They gave him 4 doses of Narcan and it didn't work.  His organs started failing after the overdose.  

Just when I thought I was coming to terms with the cancer, I now am trying to wrap my head around him dying of an overdose... Like your wife, who fell and hit her head, it wasn't the cancer that got them, it was an accident that could have been prevented.  I think that's the hardest thing for me to come to terms with right now.

[Christiane]

11 minutes ago, Gator M said:

LA has a Medical Malpractice Cap of $500K (Set in the 1970's - That would be $6M today)   I've had 3 different lawyers say, though I have a good case...They will not take the case..."Because they probably would not win ENOUGH to cover expenses". 

@Gator M My daughters asked me to call a couple of lawyers because of the overdose.  My daughters said that if it would have been me giving an accidental overdose to my husband, I would have most likely got charged with something.  One doctor I talked to also told me to talk to a lawyer, if not for the money, than at least to make a point that something so negligent won't happen again to another patient.  

The lawyers I talked to basically said the same to me, what your lawyers told you, that the whole trial would not cover the expenses.  But their explanation was because my husband was getting "only $946" per month on disability while he was battling his cancer and couldn't work, it wouldn't be "worth" it.  It would have been a different story however, if my husband would have made $500.000 per year.  At least then, cost could be covered and there would be some money for the family...  I can't even tell you how sick that made me to my stomach... I'm so tired of the inequality in this country and how people get valued based on how much money they make, their race, their size, their religion and so much more...  But that's a battle for another day at the ballot box... I feel with you...

[DMB]

@Christiane, so sorry for your loss.  I must not have been here the day you first posted.  I've read it all.  So young, sad, yet glad you and your family were able to be with him during a snow storm.  

I have heard of MM but I do not know much about it.  I did the same as you and @GatorM, I read a lot, and asked a lot of questions.  My husband also didn't die from the cancer itself, but pneumonia in the lung that never had a tumor.  He was diagnosed with small cell lung cancer which is very different and more aggressive than some of the non small cell sub types in which they are making great strides with targeting your treatment to the mutation that you have.  Small cell isn't like that, and since it's the "smoker's" cancer there simply is not much being studied with it representing only 15% of all lung cancers.  I went and looked it up at NCCN guidelines.  In March of 2019 they just approved the immunotherapy drugs so I handed this over to the oncologist and we were approved to do traditional chemo and added the immunotherapy  on the last day.  Chemo will knock back small cell tumors quickly, but it's only a matter of time before it progresses.  After 7 treatments he had progression to his brain.  At diagnosis, he had extensive disease but a clear brain MRI.  He agreed to whole brain radiation (10 treatments) and just never recovered.  He was on mega steroids and ativan.  Certainly, enough up and down to cause pneumonia.  At the ER they had said the cancer was stable.  I will never know if the brain radiation worked or not.  

[Wavesnsky]

@Christiane

@Gator M

Today it is 12 weeks since I said goodbye to Suzy. Things really haven’t gotten much better. I have been spending more time with family and have been busy with friends and church. This would be unbearable to try to do alone. Each day feels about like the one before. Wake up, blah blah, blah, mundane, no joy, no laughter, go to bed. Just existing. I honestly don’t think I have laughed since she has passed. I get tired of lying to everyone when they ask how I’m doing. The typical response is I’m doing good, but I’m not. I did stop at her grave today and that is still tough. Instead of grass I’m going to plant the whole gravesite in flowers and wildflowers. She loved to work in the garden. Our weather is finally getting better and I should be able to do that. Although we did have some snow flurries today. Hugs to both of you and everyone else on this forum.

[KayC]

17 hours ago, Christiane said:

it was an accident that could have been prevented.

I am so sorry, you are right, the worst is knowing it needn't have happened.

16 hours ago, Gator M said:

Her rheumatologist never looked into the CAUSE of the osteoporosis...was only concerned with treating it. 

This is too often what they do, throw pills at us instead of looking into the WHY and going from there!  Why I research for my diabetic group.  I am so sorry this was yours and hers experience.  It's the what ifs that kill us later.

15 hours ago, Gator M said:

We don't treat animals the way some medical systems treat humans. 

Well they did my dog, Arlie, he was my soulmate in a dog after losing my husband, basically EVERYTHING to me and he passed his vet physical with flying colors, only to be told two weeks later he had inoperable cancer...oh and his liver shutting down.  I provided his hospice and when time to euthanize him, went to another vet and they totally botched his euthanasia...he went out in so much pain!  His facial grimace is something I will always carry with me, I wanted to EASE his way out, not cause him the most severe pain of his life!  I'm thankful he's past that now and at peace in a good place, but for me, that memory will always haunt me.

 

15 hours ago, Gator M said:

It's all $$$ and numbers.

And unfortunately you are all too correct about that.  I have the James Herriott (he was a country vet and wrote books about his experiences) series and trust me, most of them are gone, along with customer service.

8 hours ago, Wavesnsky said:

Instead of grass I’m going to plant the whole gravesite in flowers and wildflowers.

I love this idea, and your reasoning for it!

[I miss you so much]

On 4/24/2023 at 9:05 PM, Christiane said:

@Gator M My daughters asked me to call a couple of lawyers because of the overdose.  My daughters said that if it would have been me giving an accidental overdose to my husband, I would have most likely got charged with something.  One doctor I talked to also told me to talk to a lawyer, if not for the money, than at least to make a point that something so negligent won't happen again to another patient.  

 

It was me who phoned the people of  "Hospital at home". I was in total anxiety since some days before for different things and when I gave him something to drink, he choked. It was not the first time. I was very very nervous, I should have done it with more patience...So he was choking and I called "Hospital at home" service. When they arrived near midnight, he was better. They told me not to give him anymore to drink or eat, that the doctor would come next day. They injected him something. They didn't ask, just did it. I knew instantly they shouldn't have done it, but I couldn't react.

He wanted to sleep, he said : "I'm tired". I also went to sleep...The following day he was in a sort of coma and he died that night.

He didn't die of cancer, in my opinion. He died because he fell down some days before when I was forced to leave him alone with his daughter and her mother. From that day, he had more and more pain and felt worse and worse. I think the fall causes un hemothorax, or internal bleeding. I didn't take him to the hospital, the previous experience wasn't good and I was afraid he would die in the hospital alone...

Neither his daughter took him to the hospital.

So there is on the one hand the fall and then the possibility of an overdose. Before that, other things have happened (for instance, a doctor gave him a painkiller very harmful for his liver)

I had the experience of my father, too, with lung cancer, but the day of his death he had been intervened for a pacemaker (brilliant idea of the doctors!)

So I wonder if many people with cancer die in fact because of the cancer or because other "accidents".