Counting Down
This has been the fast three weeks in life. I truly don't know how it was time for my herceptin infusion again, but so it was. I suppose when one is in the house nearly 24/7, all of the days just run together so three weeks feels like 3 days.
I only have FOUR MORE herceptin infusions. Seriously. After four more infusions, I will be done with cancer treatment. That is, aside from the "elective" reconstruction surgery I am still waiting for, and aside from the procedure to have my port removed. In THREE MONTHS I can have my port removed!! At this point, it is just part of my body and I barely notice it, but it will be so good to be somewhat back to normal, not wearing the telltale badge of cancer on my chest.
A few posts ago, I talked about the older gentleman that I encountered in a pre-COVID19 packed waiting room at the infusion center. I was standing, because so many people were waiting to get in, and my new friend asked - to anyone who could answer - "so what do they do back there, anyway?" And I explained the process. I've seen my friend nearly every infusion since that one, and he always thanks me for giving him the tip about icing his port before the nurses access it. Today, he was in the chair next to mine again. He stopped by (standing several feet away, with our masks on) to chat on his way back from the bathroom. He shared that his onion-sized tumor is now almond sized, and though he was supposed to be done with chemo this week, he was going to do another round to hopefully eliminate it. I chatted about my own progress. We talked about treatment woes. Then he went back to his seat and his nurse came over. He said "you know, I was nervous at my first infusion. I was so scared. And that lady sitting next door to me answered all of my questions and made me feel better. And she gave me that great tip about icing my port, and that saved me."
I'm almost tearing up again typing it. Just the fact that I could be there in that moment and be willing to take a scared gentleman's questions as he prepared for his first chemo, is so meaningful.
You also probably don't remember that my initial treatment was supposed to be "TCHP" - with the T and C being the chemo drugs, and the H and P (herceptin and perjeta) being the antibody meds for the HER2-neu positivity. But after two rounds, I was so dehydrated, and losing so much weight, that my doctor determined that the perjeta had to be held, so I could make it through all infusions. The perjeta works as a team with herceptin, and while herceptin is an acceptable drug on its own, it isn't AS good as the combination. But my doctor explained that we had to weigh the risks and benefits, and the risks won out. But now that I am getting back to normal, I asked her if we should add the perjeta back in for my last few infusions, to get the boost. She reminded me that there was a reason I came off it in the first place, and I said 'yes, but now that chemo is done and I'm not feeling horrible all around, I can tolerate a few days of GI distress for the added benefit." She looked me squarely in the eye and said "I think you're forgetting how bad it was."
.....isn't it funny how life is like that? It's like looking at my beautiful son, and forgetting that I was in labor for 30 hours with him, in the middle of Super Storm Sandy. Or looking at my beautiful daughter and forgetting that I was 8 cm dilated with excruciating back labor when I got to the hospital with her, and was basically climbing the lobby pillar in pain. Our brains - at their best - have a way of holding on to the positive parts and grazing over the horrible parts in a feat of self-preservation. I suppose I had indeed already forgotten how bad I had it. It was only 4.5 months ago, yet feels like a distant memory. Seeing my blood counts brought me crashing back to earth, because my levels are STILL not back to normal.
My last echocardiogram - done every three months because of the heart effects of herceptin - came back fine for my ejection fraction (the part that is impacted by herceptin), but my left atrium strain was below normal. I will be monitored a little more closely, but my doctor isn't concerned.
We also talked about the side effects of the Tamoxifen (hormone blocker). I mentioned that I am gaining weight rather quickly. And shedding hair so heavily that my hair is everywhere around the house and coming out in dozens of strands if I simply touch it. My doctor said sadly, these are known side effects, or side effects of menopause, which I may or may not have entered (we won't know until we know...at the latest, she will test my hormone levels a year out from my last chemo). She suggested increasing physical activity, and I told her I'm more active now than I've been in years. She offered to set me up with the nutritionist, and I told her I have been cooking all my own meals and eat cleanly and mostly plant based (I did acknowledge that I could step away from the peanut M&Ms and I did NOT acknowledge that I just refilled my 5 and 7 pound sugar and flour canisters this evening, because the COVID baking has been in full effect) AND have been doing intermittent fasting for the cancer-fighting benefits. Alas, both of these side effects - and other fun ones - are things that come with the territory and that I should embrace because I will be on it for the next 10 years.
As I look ahead, and count down to being DONE done with my treatment, I have been thinking a lot again about the whole "survivorship" question. Someone in one of my support groups said she counts her diagnosis day as the day she became a "survivor," because we have been surviving since we learned we had cancer. That was so deep to me. And it makes sense. This entire last year has been an exercise in surviving. If it wasn't making it through chemo and surgery and antibody infusions, it is homeschooling and working full time from home and adulting through a pandemic. Yet...I am not ready to embrace it. For now, I will still say I am "cancer free but still in treatment." It's almost like if I claim "cancer survivor" I will be jinxed. I'm starting to think I won't ever feel like this is "something I once dealt with."
But I am blessed. I feel pretty good, other than being tired more easily and sore from scar tissue and the tissue expander in my mastectomy side. I am privileged to be able to stay home and stay safe right now, and I am not taking for granted that I am getting much needed rest to recover my body. My thoughts continue to be with those who are on the frontline, counting down until their lives, too, hopefully return to "normal." Whatever that will look like.
I only have FOUR MORE herceptin infusions. Seriously. After four more infusions, I will be done with cancer treatment. That is, aside from the "elective" reconstruction surgery I am still waiting for, and aside from the procedure to have my port removed. In THREE MONTHS I can have my port removed!! At this point, it is just part of my body and I barely notice it, but it will be so good to be somewhat back to normal, not wearing the telltale badge of cancer on my chest.
A few posts ago, I talked about the older gentleman that I encountered in a pre-COVID19 packed waiting room at the infusion center. I was standing, because so many people were waiting to get in, and my new friend asked - to anyone who could answer - "so what do they do back there, anyway?" And I explained the process. I've seen my friend nearly every infusion since that one, and he always thanks me for giving him the tip about icing his port before the nurses access it. Today, he was in the chair next to mine again. He stopped by (standing several feet away, with our masks on) to chat on his way back from the bathroom. He shared that his onion-sized tumor is now almond sized, and though he was supposed to be done with chemo this week, he was going to do another round to hopefully eliminate it. I chatted about my own progress. We talked about treatment woes. Then he went back to his seat and his nurse came over. He said "you know, I was nervous at my first infusion. I was so scared. And that lady sitting next door to me answered all of my questions and made me feel better. And she gave me that great tip about icing my port, and that saved me."
I'm almost tearing up again typing it. Just the fact that I could be there in that moment and be willing to take a scared gentleman's questions as he prepared for his first chemo, is so meaningful.
You also probably don't remember that my initial treatment was supposed to be "TCHP" - with the T and C being the chemo drugs, and the H and P (herceptin and perjeta) being the antibody meds for the HER2-neu positivity. But after two rounds, I was so dehydrated, and losing so much weight, that my doctor determined that the perjeta had to be held, so I could make it through all infusions. The perjeta works as a team with herceptin, and while herceptin is an acceptable drug on its own, it isn't AS good as the combination. But my doctor explained that we had to weigh the risks and benefits, and the risks won out. But now that I am getting back to normal, I asked her if we should add the perjeta back in for my last few infusions, to get the boost. She reminded me that there was a reason I came off it in the first place, and I said 'yes, but now that chemo is done and I'm not feeling horrible all around, I can tolerate a few days of GI distress for the added benefit." She looked me squarely in the eye and said "I think you're forgetting how bad it was."
.....isn't it funny how life is like that? It's like looking at my beautiful son, and forgetting that I was in labor for 30 hours with him, in the middle of Super Storm Sandy. Or looking at my beautiful daughter and forgetting that I was 8 cm dilated with excruciating back labor when I got to the hospital with her, and was basically climbing the lobby pillar in pain. Our brains - at their best - have a way of holding on to the positive parts and grazing over the horrible parts in a feat of self-preservation. I suppose I had indeed already forgotten how bad I had it. It was only 4.5 months ago, yet feels like a distant memory. Seeing my blood counts brought me crashing back to earth, because my levels are STILL not back to normal.
My last echocardiogram - done every three months because of the heart effects of herceptin - came back fine for my ejection fraction (the part that is impacted by herceptin), but my left atrium strain was below normal. I will be monitored a little more closely, but my doctor isn't concerned.
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| I was late to my appointment today, because I wanted to make quinoa salad for lunch. |
As I look ahead, and count down to being DONE done with my treatment, I have been thinking a lot again about the whole "survivorship" question. Someone in one of my support groups said she counts her diagnosis day as the day she became a "survivor," because we have been surviving since we learned we had cancer. That was so deep to me. And it makes sense. This entire last year has been an exercise in surviving. If it wasn't making it through chemo and surgery and antibody infusions, it is homeschooling and working full time from home and adulting through a pandemic. Yet...I am not ready to embrace it. For now, I will still say I am "cancer free but still in treatment." It's almost like if I claim "cancer survivor" I will be jinxed. I'm starting to think I won't ever feel like this is "something I once dealt with."
But I am blessed. I feel pretty good, other than being tired more easily and sore from scar tissue and the tissue expander in my mastectomy side. I am privileged to be able to stay home and stay safe right now, and I am not taking for granted that I am getting much needed rest to recover my body. My thoughts continue to be with those who are on the frontline, counting down until their lives, too, hopefully return to "normal." Whatever that will look like.
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