Finding Holiday Joy in Hell

The year was 2001.  It was my year from hell.  In January I watched as my mother died, right after New Year’s.  I lived in California at the time.  When I flew back from her funeral, we got the days wrong because I was a little out of it, in a fog actually-mentally, and missed our flight by an entire day.  They weren’t sure they could find us seats and I asked which one of my sons they wanted to keep.  We finally got home!

When I got back, both my oldest son Chip and I had terrible coughs.  They’d been horrible at the funeral service, all through our short stay in Wisconsin, and flying, we just thought we had bad colds.  I didn’t have insurance, so we couldn’t just go to the doctor’s office.  Finally, it was so bad, I insisted we go to the walk-in clinic…I’d pay out of pocket if I had to.  Chip had bronchitis and I had pneumonia.  No surprise there.  In fact, I’d walked in telling them I had pneumonia.  But, they wouldn’t just give us the meds unless I promised to come back.  After sitting there for four hours, I’d have agreed to anything.  It did make me think though, if it had been worse, it could have destroyed a lot more than my pocketbook.  So, I got insurance.  The only thing they wouldn’t cover was pneumonia, because, apparently, that can come back.

I decided to sell my house in Huntington Beach that I had bought with my mother at nineteen.  It had been a wise investment and while Mom was alive, she wouldn’t let me fix it up at all.  It really needed an overhaul.  Two little boys, various pets, and adults…it was well lived in.  I found a wonderful realtor who helped me hire a handyman.  He did a beautiful job.  I wanted to move back in it was so nice.

I also had a divorce to finish.  I’d started it six years before, but for many reasons, hadn’t concluded it.  Mostly it was because he asked for alimony, half my house, and half my businesses.  I was pissed.  By the time I got done with him, he got nothing.

Meanwhile, I was having trouble breathing.  It wasn’t from the pneumonia, that was well past, but now that I had insurance, I called the insurance salesman and asked if I could go for a wellness check.  After all, I hadn’t been in eleven years since my son Andrew was born.  I needed to go.  Going to the doctor’s appointment, I had my truck tuned up from a long and intense trip we had taken for business, the truck ran out of gas on my way!  They couldn’t get me in for several weeks.  I told them, I didn’t have several weeks, I was sick, and now.  They asked me to see a nurse practitioner.  I didn’t mind, she’d taken care of my mother too.

The diagnosis was non-Hodgkin’s lymphoma, type B, and it was pretty advanced.  If I did nothing, it was going to choke me to death in four or five months.  The boys were ten and twelve, I couldn’t do that.  I tell you, if I was alone, the depression I was dealing with would have killed me too.  However, normal chemotherapy takes twelve or more months.  The doctor said not only did I not have the time for that to work, but he had an experimental treatment out of Stanford that he’d like to enter me in a clinical trial for.  I figured I had nothing to lose but my life.  I asked that he just make sure I didn’t get a placebo.  He assured me it was the trial and I would get the meds.  I made out my will with my lawyer, finished my divorce, and sold my house…in that order.

The clinical trial started right away, thank goodness, right?  Within two weeks I was bald.  Those who know me, know my hair is to my waist most of the time, so you can imagine how this affected me as it came out in gobs and I finally shaved off the rest.  Bald is beautiful right?  No.  Not on all heads, as I do not have a beautiful head, it looked horrible and was very cold.  They offered me wigs, but it made me shudder at the thought.  Instead, I covered up with scarves and a hat.

Meanwhile, I had to take care of the boys.  The lawyer explained that if I died, that while my estate which at the time was worth more than a million dollars between the life insurance, the house selling, and my businesses, would go to my boys…the boys, who I wanted to go to my brothers, would be ‘given’ temporarily to their nearest relative…their father.  If their father knew that the boys were worth over a million dollars, they would never have been seen again, he is that type of man.  So, I decided I wanted to go back to Wisconsin where I grew up, so they would be safe from their other nearest living relatives and my brothers would protect them.

I traveled, against my doctor’s wishes, so I could find a house.  One that the realtor showed me, I kid you not, had a creek running through the basement.  The thought of molds, moisture, and other things being let in through this did not appeal.  I didn’t find a place.  Fortunately, my sister-in-law found me a place to rent up by her and we did eventually move there…but only after I had completed chemotherapy.

You see, the treatment, called the Stanford Five Protocol, then in its experimental stage, was essentially twelve months of chemo in twelve weeks.  Let me tell you, I’ve never been so sick in my entire life.  You are supposed to lose weight then, I bloated.  It was horrible.  When it was over, I vastly relieved.  Originally, I was only to have nine weeks, but the doctor changed his mind and wanted the full twelve weeks, that was when I got depressed from the treatment.  He wanted to continue with radiation right away, but I was so weak, I wanted time to heal…and move.

My divorce had come through in June.  I had to get a doctor’s note that I couldn’t go to the court hearing because I was so ill from the chemo.  The judge granted everything I wanted.  I don’t know if he felt sorry for the dying woman, but I was grateful.  A week after getting my court papers, my house papers came through and they tried to give half of the money to my ex-husband.  I was furious.  Thank goodness I had the papers from the judge, granting him nothing!  He deserved nothing for not paying a dime of child support.  He never has.

 

When chemo was done at the end of summer, August, I moved everything lock-stock-and barrel to Wisconsin and the converted barn that my sister-in-law had found for us.  I could work downstairs and live up in the loft in an apartment with the boys.  It was a good thing too, as I was too weak to work somedays, and it took me weeks, months really, to get the household in order much less the work space.  I had to work, it was paying the bills and rapidly using up the monies from the house that sold.  The sad thing about the move, the movers broke a lot of things, didn’t pay for them ever (not even insurance), and held my things hostage until they nearly doubled their price on the move itself.  I’d heard of such things on 60 Minutes, I was the victim of the scam.

The boys entered new schools, and I had to find new doctors.  Apparently, the oncologist I chose was very well-known.  His staff were the worst and they treated me very badly.  Radiation isn’t supposed to have the side effects I experienced, but I lost weight, got dizzy spells, and felt nauseous.

2001 Paul, Mary - Copy

Still, I managed to get to some milestones.  My thirty fifth birthday was that November…after I finished radiation.  I celebrated with my sister-in-law and a friend from college.  I was grateful to even be there as the five months were up.  My hair had started to grow back after chemo in August and by November was an okay length that I no longer needed the scarves or hat.  I was, however, bloated.  This is a picture of my third brother and I when it had started to grow.

Thanksgiving was celebrated with my brother and sister-in-law who lived nearby.  It was weird after all those years of being in California and having pizza on that holiday as a joke, to celebrate a traditional holiday feast.  I managed to put my foot in my mouth as they made mashed potatoes from scratch and my mother never had.  She used dried potatoes and we made instant.  I made a comment that I had never seen my mother make mashed potatoes from actual potatoes and my brother was furious for some reason.

That Christmas, was celebrated in style.  The boys got so many gifts, because I was so grateful to even be there.  I celebrated with one of my brothers and his family down in Milwaukee and managed to bring my sister back into the fold of the family and start a relationship that my niece enjoys to this day with that part of the family.  Being estranged they didn’t have it before, and I was grateful that I was the impetus for that.  It was a wonderful Christmas, despite the year I had just experienced.  Seeing family and being with them all.

That New Year’s we celebrated together.  It was nice, and the boys and I had a tradition, we’d play Monopoly into the new year.  I remember things differently than they do, of course, but I was just so happy to be alive, to be there and to put 2001 behind us.  Christmas and New Years aren’t happy holidays for me because my mother died around then, but that year, I had so much to celebrate…I had my boys, a new home, and I was alive.  I may have residual pain, complications, and such for the rest of my life from our little experiment, but I am here, and I can still remember that year from hell and remember the Christmas and New Years JOY!

I tell you this, not to depress you, but to tell you that no matter how bad it is, or was, you can get through it.

Merry Christmas!

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Another NEW year, celebrate WITH me!

I don’t know why this date always sticks out, because I don’t recall the exact day I found out I had cancer.  However, I do remember it was April, I’d just come back from an expo with my sons, my mother had died of brain cancer in January, I was selling my house in Southern California, I was finishing up my lengthy divorce that had taken over six years, and I was very, very sick.  I couldn’t breathe.  It was a Wednesday when I got in to see the doctor.  On Thursday I had x-rays, on Friday I went in for a biopsy…I was awake for the surgery where they removed the lymph nodes in my neck…it was gross because I could see the entire procedure on the shiny light above me, I couldn’t move from the anesthetic paralysis they had put me in, but they wanted me to talk to them, you know, in case they hit my vocal chords?

I’d been sick for a year, I knew it, as a woman, as a mother, and as someone who feels things very intrinsically.   I ignored it.  Why?  I was trying to raise two boys.  They were, when I found out my prognosis, aged twelve and ten.  I was also trying to run two businesses, one of them internationally and it was growing exponentially.  I was also trying to maintain two households.  I had a house in Huntington Beach, CA and another that I was renting in Los Osos, CA.  Then, my mother started behaving oddly.  She was living in our house in Huntington Beach and I was ‘home’ for the weekend.  I remember the first sign vividly in October of 2000 as it still hurts, even though she didn’t mean it, and it was so out of character for her.

We were watching some TV and a commercial came on about abuse.  A woman of about forty was yelling.  You would assume by what she was yelling that she was saying it to kids, abusing them.  Then the camera panned out to show a little old lady, practically cringing away from yelling woman.  I was horrified.  I turned to my mother and told her how much that commercial upset me.  Not that it was okay if it was children she was yelling at, neither was it okay to yell at a defenseless older woman.  My mother looked at me almost blankly for a moment and said, “Well, what do you think you do to me?”  I stared at her in the same horror that I had felt at seeing that commercial.  I gasped.  I also defended myself.  I said, “I would never speak to you in that manner!”  She had raised me correctly and she knew I would NEVER raise my voice to her.  She subsided after that.  I, however, realized something was wrong.  My wonderful, kind, and patient mother was behaving irrationally, that was the ‘first’ incident that I was aware of.

In November of that year, I bought another house, this time in Los Osos, CA, across the bay from Morro Bay, CA, so we could all live under one roof again.  It had to have a fenced in yard since we had two dogs, five cats, two growing boys, and my mother and I, as well as near enough to my warehouse in Morro Bay.  We were all elated as I signed the paperwork.  I had told no one as I didn’t want to jinx it until it was complete, good thing too as a week after I signed the seller changed their mind.  I felt horrible as my mother was so excited about us living together again.  She adored her grandchildren which she had helped me raise once I became a single parent.  I firmly believe that with her help they turned into better human beings than they would have it I had been completely alone for those years.

At Thanksgiving, I arranged to have someone else cook our dinner, I was too busy with work and picked it up.  We really enjoyed the meal and my mother was behaving oddly.  I kept asking her if she was okay the whole weekend before I had to get back to my other home and work up in Morro Bay.  It was a four-hour drive.

My mother knew my 1-800 number (it’s a free number to call businesses to those of you who don’t have that in your country) by heart and called me at least once a day, or I called her to check in.  A week or so before Christmas I couldn’t reach her.  I tried for days.  I had the police go do a ‘wellness’ check where they go pound on the door and ask the occupant if they are ‘okay.’  There was no response.  I finished up my Christmas rush of orders as fast as I could and headed down as soon as the boys were out of school for the day.  No one answered the door, my key worked, but the door was bolted.  I could, however, hear the dogs barking.  I had to lift my boys, one by one, over the back fence.  My biggest worry was that she had died in the house and they would find her, there was nothing I could do.  They went through the dogie door.  I went around to the front of our town home and they let me in.  My mother was sitting on the couch and was like, “Hi there!”  I was not amused, but I was relieved.

Fortunately, across the common area of our townhome complex lived my friend Jill.  She had been a nurse for years and I went to see her after we visited for a while at mom’s.  I asked her what I should do and she recommended I take my mother to the E.R. and tell them about her altered state, just as I had told her.  With that course in mind I went home and asked my mother when was the last time she had bathed.  Clearly, she could no longer take care of herself and this altered state of mind worried me.  Was she taking her meds?  Was she feeding the dogs?  I had regular orders of groceries delivered, part of our phone calls so I could just arrange that all the time.  Everything ‘seemed’ fine but I knew something was wrong.  She asked me if she stank, I assured her that she didn’t, but wondered if a bath would make her ‘feel’ better.  It did.  We had a delightful evening together, just like always.  The next morning, I took her to the E.R., she would never return home.

Getting her to the hospital alone was a nightmare.  I had one of those extended vans and she couldn’t get up in it.  I tried to lift her, but as we were about equal in weight and height, that didn’t work.  Then, her colostomy bag broke and we had to clean her up.  It took two HOURS to get her out the door and to the E.R. which was about ten minutes away.  I felt so bad as though I had failed her as a daughter.  I hadn’t, but I felt that way.

They kept her because based on my description of her behavior, they ran a scan and found a brain-tumor.  The doctor was eager to operate.  I could imagine my mother’s horror at the idea.  She was a very conscientious and particular person…about the way things should and shouldn’t be done.  She was very classy, very dignified.  She’d already survived thyroid and colon cancer, she would not want her head shaved and them digging into her brain.  The tumor had metastasized already but not from her other two cancers.  I have a theory that when she went in for her regular checkup in June, that they found out about the tumor, and she chose not to tell me.  She chose to let it go.  I decided then and there, knowing my mother, that she wouldn’t want the brief amount of time the doctors would have given her with such a surgery.  She would want to go on, she was tired of fighting, she was tired of living, she would want to die with dignity.  We’d talked extensively over the years about her two cancers, her three strokes, and I knew her well enough to know what she would want and the decisions she would make if she could.  I refused to allow the surgery.  I told my mother who was lucid, but had short-term memory loss, my decision.  I wasn’t sure she was nodding because she trusted me or because she agreed with me.  After telling her three times that weekend that she was dying of a brain tumor, I was done, I wouldn’t tell her anymore.  It hurt too much.  This was Saturday when I admitted her, by Monday she was in a coma.  They said she would never awaken again and probably be dead by Thursday.  This was right before Christmas 2000.

My mother not only woke up again, she recognized me, my boys, and my brother when he visited.  Nothing like making a liar out of the doctors.  During the last days, she had a stroke.  She always thought she would die of a stroke since her mother had, so when she tried to ask me what was wrong with her and I couldn’t tell her again that she was dying of a brain tumor, I told her she’d had a stroke.  THAT she could understand and comprehend and it seemed to give her comfort.  She even tried, during the last days, to comfort me when I was crying about her dying.  She told me I would be okay, patting me on the stomach.  She was right, I would be okay.  When she slipped back into her coma a few days later, I told her to go on, don’t hang around for me, I would be fine, she raised a strong woman, and I loved her.  She died the next day on January 4, 2001.

Four months later in April I was dealing with my own prognosis and possible death.  It was terrifying for my two boys.  I tell you, if they didn’t exist, I probably would not have fought so hard.  The doctor told me if I did nothing that I would live maybe 4-5 months…and it wouldn’t be a very pleasant death, choking to death.  I became a human guinea pig.

You might wonder why I tell all this, part of it is to remember because I need to, to exorcise it from my psyche.  Part of it is to tell others that no matter how bad things are, you can do it, you can deal with it.  I write about strong women in my books because I am a strong woman, my mother was a strong woman, my grandmother was a strong woman, my great-grandmother was one too…so I come from a long line of strong women and that is what I know and write about.  Here’s a bit of trivia, I am the youngest daughter, of the youngest daughter, of the youngest daughter, of the youngest daughter…how is that for a legacy?  I have no daughters, lol

No matter what you go through, what you may go through, you can do it…I firmly believe that the fates, that a higher power, God if you believe, doesn’t give you ANYthing that you can’t handle.  So, celebrate with me that it’s been SIXTEEN years since that long-ago prognosis.  I’m here, I’m still publishing stories that I hope you all enjoy, AND there is more to come.

If you wish to read more about my cancer story, please click here, here, here, and for the first mention, here.

AND, as always, check out my website to look at all my amazing books!  (Click on the picture to be taken to the site)

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