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.
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.