The CT scan happened on a Saturday and the following Monday I was scheduled for my first chemo session. This was a horrendous day for me for a few reasons. First, chemo. Second, it was the birthdate of my late best friend. We'd been besties from high school. Soooo...I check in for my first session. Remember that I hate needles, and cancer is all about needles - blood work, tests, you name it. My sessions are scheduled for every three weeks and I have already been told that the first week will be the worst; I will feel better the second week; and by the third week I'll feel almost normal, only to start all over again the following week. In all, I'm scheduled for six sessions (so 18 weeks). It seems like such a short time, but also so very long.
Shortly after checking in at 8:00 am, a volunteer came to lead me to the chemo room. I was visibly upset, with silent tears running down my face. I was about to confront something so completely scary (cancer), and I was thinking of my late bff on what would have been her 59th birthday. The volunteer asked me if I was okay and all I could do was shake my head. She asked if it's my first time, and I could only nod and whisper "yes". She led me to the room and I picked out a chair. They have recliners ranged around the room. While I'm waiting for a nurse to start the IV, the volunteer brings over a few quilts. She explains that these are made and donated to the cancer room for patients. You get one on your first visit. I picked one and she draped it over me. You need it because it gets quite cold in there.
The nurse arrived and started the IV. First in is a little saline as they test the line. Next, of all things, is antihistamine. Apparently it helps with the nausea. It also knocks you right out. It's funny because each time the nurse has to change the bag of whatever is going in, she has to check with you to confirm your name and birthdate, even though both are on the hospital wristband you're given. So there I am, groggily trying to say my name and date of birth. Good thing the nurses understand groggy.
As I was kind of waking up from the effects of the antihistamine, my phone rang. It was a doctor who had just read the results of the CT scan I'd had done on Saturday. He wanted me to come to the ER right away. I explained that I was in the midst of a chemo treatment and suggested he call my oncologist. When the stroke event had occurred, I had been put on some heavy-duty blood thinners right away. Well about five minutes after that doctor called me, my oncologist and one of the hospital's pharmacists showed up beside me. This is a rare occurrence for an oncologist to appear in the chemo room because the actual administration of chemo is all managed by nurses. He told me to stop the blood thinners immediately. The problem was that the CT showed a blood clot in the lungs (pulmonary embolism). Blood thinners tend to break these types of clots up, potentially causing chunks (small, but still). He and the pharmacist wanted to melt the clot away rather than break it up. The good news? Remember how I said I hate needles? Well now I had to give myself injections. With real hypodermics - not injector pens like an insulin pen. Twice a day. I told him this would kill me but I'd do it. So the pharmacist and he proceeded to explain how and when. They had a nurse show me when she gave me the afternoon injection before I left.
So once you wake up from the effects of the antihistamine, you'd better have something to do - play on phone, read a book, crochet. You can also chat with others in the room. That day I started talking off and on with another woman seated across from me. When I was finally set free around 2:00 or so, as I was folding up the quilt to take with me, the woman I'd been chatting with suddenly asked me "how much?" I didn't understand. She explained she wanted to buy my quilt because it had purple and that was her favourite colour. I finished folding it and handed it to her. I said I couldn't take any money for it when I hadn't even paid for it. The volunteer, who was about to walk me out in a wheelchair (I was exhausted), saw this and took me to the room where they keep the quilts. She let me pick out a replacement.
Sure enough, as advertised, my hair began to fall out. I was so exhausted that my husband took to getting into the shower with me to wash my hair as I couldn't even lift my arms to do it. I'd cry the whole time as clumps of hair disappeared down the drain, and he'd try to console me that it would grow back. That possibility seemed so very far off.
My second treatment, three weeks later, happened to fall the day after the 20th anniversary of the passing of my late bff. So of course I felt like absolute crap again. I had been dutifully giving myself twice-daily injections. I would look at her picture and tell her it was for her and that I was not dying of a pulmonary embolism, like she had. By the week after my second treatment my hair was all but gone. The thing is, although everyone knows you lose your hair off your head, I never really thought beyond that. Of course you lose absolutely every hair off your body - facial hair, legs, underarms, pubes, even nose hair. All gone.
My son was my constant companion as there were so many appointments. I had regular doctor, oncologist, stroke clinic, neurologist, eyes, wound care, blood work, and chemo, to name a few. He drove me everywhere, and for the most part he did so without complaining. By the time I'd had two treatments, I was just about done in. I lamented on FaceBook that I wished there was some kind of spa for cancer patients to go get pampered with food, massages, rest, rinse and repeat. And that it be free. Even though I live in Canada and my treatments were free, there are still ancillary costs associated with cancer treatment like gas for the car, parking, and sometimes meals. Well wasn't I surprised when one of my friends replied that there is such a place and gave me a link.
I followed the link to a retreat for cancer patients. It was a four hours drive from me, but I would be able to bring a support person. I signed up to be on the waiting list, and since I could be available at relatively short notice, I ticked that box on the form. I was stunned to have them reach out within a few days asking if I could come to the retreat in the middle of November. They'd had someone drop out. I agreed and immediately called my sister. She agreed to come as my support person and to drive.
The retreat was another emotional roller coaster. I had word just before leaving for the retreat that I would have to add a third injection for the next several days. My white blood cell count was low and needed to be increased before further chemo treatments. I was given four hypodermics with whatever drug in them that would help (force) my bones to produce more white blood cells. The needles were bad enough, but the actual act of being forced to produce white blood cells makes your very bones ache. Bone deep, literally. Still, the retreat was good with morning and evening yoga; really good, healthy food; music therapy - gongs and drums; massage; nature walks; and sharing circles. The sharing circles were hardest, but I made friends through our shared experiences. (Sadly, as of the writing of this post, one of those individuals has passed away. She is free from pain now.)
I had another CT scan in mid-December. Christmas passed quietly in our home. Towards the end of December I had another meeting with the oncologist ahead of my chemo treatment. He was happy to tell me that the CT scan showed "significant" reduction in my tumours, with the stomach ones gone. Hooray! Naturally I cried in his office and he told me that everyone does when I mentioned it. He also said that of all his patients, ever, I was the one with the best overall outlook. I told him that I was determined to think positive because I believe in the power of manifesting what we think.
The big day finally arrived at the end of January when I had my last treatment. While the chemo was over, I still had daily injections to give myself and I would have ongoing immunotherapy infusions for the next few years. I rang that bell like it had never been rung! I'd made it through the chemo treatments.
In mid-February I'd heard from the surgeon about reversing the ileostomy. I went to see him for a consultation. At that meeting he suggested that perhaps I might want to hold off on the surgery. He said that if my cancer were to return and if I had to have this surgery again, it would likely be permanent. I told him that I refused to live my life afraid to live my life based on something that may or may not happen in the future. I said that if the cancer did come back, then I would deal with it then, not before.
We scheduled the surgery. This time it went off without a hitch, although there was a six to seven week recovery period to be expected. When I saw the surgeon a few weeks after the surgery, he was happy with how the healing was coming along. I told him that I considered myself to be quite lucky as I had now beaten cancer for a third time. What he said next just bowled me over in surprise. He said that I was very lucky because most people with this particular type of cancer don't survive! I was stunned. I had a follow-up with the oncologist a week later ahead of my immunotherapy treatment. I asked him about it and he confirmed that was indeed the case, but he didn't like to tell patients that because even he couldn't predict which ones would respond to treatment and which ones wouldn't. I said I appreciated that because if I'd had any inkling that I might actually die this time, my whole attitude throughout the whole process would have been completely different. The other good news was that I no longer needed to give myself daily injections. I was allowed to go back on blood thinners.
Now that I was pretty much on the road to full recovery, it was time to get my license back. It took a couple of tests before the neurologist was satisfied and the Ministry of Transport granted my license back. I have to say too, that it was a good thing I was listening and not driving. One day as my son drove me to visit my coworkers, we were pulled over. The officer came to the window and said they'd pulled us over because the license plate had popped up on their system as "owner license suspended". I leaned over from the passenger seat and said that was me. They took my son's license and were back thirty seconds later to hand it back and let us go.
At the beginning of June I started back to work on a graduated return to full time. It's been such a long journey, especially if I count from that very first diagnosis. This time, however, I'm feeling really good. I feel better than I have in years. Think positive people. Think positive.
***
Here it is just over a year later now since this last cancer event started. Once again I went to the Mensa annual gathering, which took place last weekend, in Calgary this time. Our son paid for the trip for us as our 25th anniversary gift. The universe does put us where we need to be at times. I had arranged to meet with a member one evening of the conference. They suggested we meet at the registration desk, and I took that to mean the hotel registration desk and was waiting there. One of the desk clerks was wearing a toque - odd as it was pretty darn warm out. I asked if he was cold, and he looked around then whispered "cancer". I immediately pulled the front of my hoodie so he could see the decal and told him I understood as I'd now survived it three times.
He asked if he could ask me a very personal question about it and I said he could. The young man asked, "How do you go on knowing that cancer could come back at any time?" I looked him in the eye and said, "You live your life. None of us knows how long we truly have, so just live your life." He shared that he had been given a 95% chance of success with his treatment, but he had tears in his eyes. I felt his emotions. I knew his emotions. I asked if he wanted a hug and he said yes and came from behind the desk. This was a big man and he enveloped me in a hard hug for a full thirty seconds. He went back behind his desk and my phone rang with my friend saying they were at the Mensa registration desk. I truly believe I'd been put at the hotel registration desk just at the moment that young man needed me. I really hope things go well for him.
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