Quite honestly, this word has dominated my life since the three days before Christmas when I was given the confirmed diagnosis. I've not been terrified, but I have been apprehensive - and my greatest help has been the grapevine of survivors who have so generously shared their experiences with me.
It kind of went like this. I got the diagnosis. Then I put on a brave face and got through Christmas. (The whole time, some menacing inner voice kept whispering, "You've got cancer, you've got cancer, you've got cancer...") I prayed fervently to the God of my understanding to shut the voice off, realizing I was just obsessing over something for which I had no easy-fix. And then, oh, God, I went through the medical maelstrom of information on top of information on top of information! Doctors' voices, books, pamphlets, the internet. I turned to my friend survivors, who were comforting and sometimes even more informative than the medicos. So many decisions to make, so many recommendations to listen to. Good Lord! I think there are times when we get too much information.
A very wise woman told me many years ago, "Linda, when you're too jammed-up, sometimes it's best to make a decision and murder the alternatives." Bingo! And that wonderful advice helped to clear the mental and emotional fog, to a degree.
So I chose the surgeon, recommended by my family doctor. Didn't know her from a green tree, but his recommendation was good enough for me. I liked the fact that she is a female, she is considered to be one of the GREAT breast cancer surgeons around these parts, and any doubts I might have had were quickly dispelled in our first meeting. She's a straight-shooter, has a sense of humor, and she was honest with me. (She also happens to be an experienced sailor, which I didn't know at the time, but that news only added to my confidence level.) Based on what she shared with me, I opted for lumpectomy, no re-construction of any kind, and then I'd tell her what form of treatment I wanted.
Then it was on to the choice of an oncologist - and I followed the direction of other survivors. Once again, she is another female who is exclusively a breast cancer doctor. Younger than my younger daughter, she's adorable, brainy, and fun, and extremely forthright. Really, really liked her - and liked the fact that she didn't 'push' for what may have been her first choices. I saved my second opinion for an academic at Johns-Hopkins, who had also been a colleague of hers at the University of Pennsylvania. He's an M.D. with a Ph.D in breast cancer studies - exceptionally bright and respectful, and not at all threatened by a woman with strong opinions, (who, me?) In fact, he even agreed with me when I said I'd always felt chemo-therapy was a form of overkill. "You're absolutely right," he smiled at me, "and unfortunately, we still don't have enough definitive data to set or cut back limits. We're still operating with what seems to have the best success rate, and each case is individual." Jeeze, Louise! No patronizing, no condescension, no nose-out-of-joint. Just plain old honesty. I felt an instant kinship and a sense of almost-comfort.
Based on our 2+ hours of conversation, I'd already come to the conclusion that what I wanted was what I jokingly call, "Chemo Light." I could've gone for the "heavy-gun" stuff, which is eight rounds of chemo treatments spaced two weeks apart, and contains one more ingredient than the "light" stuff - but since my cancer was Stage I, very small, slow-growing, and self-contained, and since I'm in my early 70s, I opted for what seemed like a gentler protocol.
The whole point of chemo, I've learned, especially with my form of breast cancer, (ductalary carcinoma), is to prevent a recurrence, not to "cure" cancer. The cancer is essentially removed with the surgeon's scalpel - the chemo sets up a process of sort of capturing and killing off any "rogue" cancer cells that may have escaped. My understanding is that it's the white blood cells that glom onto any rogue cells and strangles them, which necessitates lots of blood work and tracking blood cell levels. All the docs throw a life-expectancy of 10 years around this procedure, which may or may not include radiation as a finale. Decision is mine. So, hey, if I get to live to be 82, that's fine by me. I'm not out to win some longevity contest. I have no particular desire to survive breast cancer to ultimately die of something caused by chemo or radiation. My jury's still out on the radiation issue, and I still have weeks to make that decision.
And if you've been following this blog, you already know that the breast surgery was almost a non-event. Had all of my kids with me - lots of laughter - little or no pain - and all in all, the finished product doesn't look bad. I joke about my career as an exotic dancer's being over - and I've been advised that "Sammy the Tattoo Man" in Philadelphia has made an entire career/art of tattooing nipples on de-nuded breasts - and some women disguise the scar with tattoos of humming-birds - but no thanks, Folks. What you see is what you get, and that's that.
So, the next LOOMING thing was the actual first chemo treatment. During my surgery, I'd had a "port" installed, which is an under-the-skin conduit for administering the chemo liquids, rather than having to have an IV line put in each time. I was given some numbing cream to put on the connection site, and was started on a regimen of high-powered pills loaded with cortisone for two days before the procedure. I was told I could feel very "wired" or bitchy with this medication, so I took it with a lot of nervous determination. I promptly fell sound asleep for two hours, and continued to feel sleepy throughout the pill-taking-pre-chemo days.
And finally, THE day arrived, daughter Katie and I met one more time with the oncologist before reporting to the "Infusion Dept." There are 39 sort of cubicle thingies, each centered with a recliner. I was tucked into the chair, and surrounded myself with all my good luck charms: a picture of my late husband, a teddy bear from Sue, a heart-shaped pillow from Sue and Lois. I hooked up my laptop, got organized with the wi-fi, turned on the cable TV - and then more pre-chemo medications were administered. Tummy pills, Benadryl, another dose of the cortisone stuff - and by the time my sweet young nurse attached me to the chemo, I was half-asleep already! The whole two-hour chemo part was a drowsy experience - punctuated by a visit from a darling therapy dog, a performance by a traveling harpist, and a classical guitarist. The guitarist was also hooked up to a chemo machine, and she played the most beautiful, soft music, it was hard not to sleep. Then lunch was served by a young man with a rolling cart - yummy sandwiches, chips and drinks. And before I knew it, it was over.
I felt so clear-headed and refreshed, my daughter suggested I drive home, which I did! I was absolutely amazed! I'd had no idea of what to expect, and I'd imagined feeling terribly ill, or head-achey, dizzy, or something. To the contrary, I felt fine, and home we came. The next 24 hours were un-eventful. I'd been told I'd feel tired, which I did, so I napped when I felt like it, and slept well at night.
I decided to take the bull by the horns and had my daughter shave my head. Everyone said I was going to lose my hair, and all said it was far easier emotionally to just bite the bullet and DO it, rather than waking up in the morning with my hair all over the bed, or clogging the shower drain. I've always held the philosophy that "hair is just hair," so the experience was un-traumatic for me, and my daughter and I laughed most of the time. We had fun "playing" with some hair pieces, hats, and scarves I'd pre-ordered on-line. She took pictures and posted them on Facebook, and the reactions started rolling in.
The next day dawned rainy and icy, so we had to cancel a trip back to the medical center for a follow-up injection of Neulasta. The purpose of a Neulasta shot is to build/strengthen blood cells, and it's another of those no-big-deal things as far as the injection itself is concerned. My daughter waited in the car while I ran in and had the shot, and soon we were off to a fabulous home decorating store to browse around. During our 20 minutes there, I noticed my energy beginning to flag and there was sort of a niggling little sharp pain in my right hip joint. Once again, I'd been told that I might experience some bone pain as a result of the shot, but no one said it would be unbearable. Now, I'm no wimp when it comes to physical pain - I've given birth three times, and have endured three other pretty painful surgeries, all with nothing more than maybe one shot of Demerol, followed by doses of Extra-Strength Tylenol. So it wasn't as if I were lying on the floor writhing in agony, or anything. But by the time we got home, the pain, albeit light, was radiating down my thigh bone and into my leg. It turns out that this was what I'd call "preliminary" pain, a preview of what was to come.
The process at the medical center is to call a Triage Nurse - anytime - if you have a problem, or if anything unusual happens. I called about the pain, and was given instructions about what to take and when. By this time, I'd sent my daughter home (2 hours away), as she was about to celebrate a birthday, and I wanted her home with her family for the occasion. So I was here alone through two nights and one day, with the pain just growing and not responding to anything I was told to do, medication-wise. By the morning of the third day, I was back on the phone begging my daughter to return. Admittedly, I was in a bit of a panic, and that, coupled with the pain, was making me feel icky all over. I didn't know WHAT to expect. I called my survivor friends. No one had experienced the state of pain I was in - and everyone who had had some of it said that the recommended medications and warm heat had helped. I tried, I really did. And the pain kept coming on and on and on. By the evening of the third day, all the heavy bones in my body felt as if they were on fire: my ribs, my spine, the bones in my jaw and my skull! I couldn't decide whether to lie down or stay on my feet. I couldn't find a position to be comfortable. I lost my appetite, but persevered with pushing fluids. Everyone said, "Stay hydrated," so I nearly drowned myself in drinking water and sucking on ice pops.
Through a snafu in communications, I was unable to reach even my oncologist, so in desperation, I called my family physician on the morning of the fourth day. We discovered I had pain medication from my earlier breast surgery. I hadn't taken it because I hadn't needed it, and when I read the label, the doctor said, "You can have that! TAKE it!" I didn't need to be told twice. I took the blessed pill and was sound asleep within 20 minutes! I slept for a solid two hours and woke up absolutely pain-free for the first time since the shot! If I could have, I would have gotten into the car and gone over to my doctor's office and kissed him square on the lips! (Which would have mortified him - he's basically very shy and proper.)
The pain began to dissipate over the course of the next three days, and then I was pain and medication-free. I felt like me, and I was once again able to go about my days as usual - driving, running to the post office, popping in at the grocery store - all while wearing a surgical mask over my face. (Advisable, because chemo can pretty well destroy your immunities.) I was able to send my daughter home after the first pain-free day, and life was pretty near normal once again.
I've now undergone my second of four chemo treatments - just as "dreamy" as the first - only I got two therapy dogs instead of one, and the harpist seemed to be among the missing. The guitarist was there again, practicing for a concert, and she played the entire time - and lunch was once again delicious. Forty-eight hours later, I went back for the dreaded Neulasta shot. The oncologist agreed to cut the dosage in half, and we decided to try some prophylactic non-inflammatory over-the-counter stuff in advance. Once again, my daughter sat in the car. I got my shot, and then we had a glorious time prowling through Trader Joe's and then K-Mart afterward. (!) Can't say I haven't had any pain, but it's 80% reduced in intensity and confined to my right lower leg. And my hair started to fall out that night. I scratched my head, and a shower of silver whiskers cascaded down my face. It was really kind of funny. I had Katie shave my head one more time before she left for home the next day.
Okay, so that pretty well synopsizes everything, and brings everyone up-to-speed. I told daughter Vanessa, who requested this, that she'd better pour herself a couple of cups of coffee before she sits down to read this one.
I hope I've portrayed this journey as accurately and honestly as possible. It has certainly had its highs and its lows, but nothing like what I've heard about over the years. Thank God, modern medicine is REALLY trying to make this as humane as possible!
Probably THE HUGEST gifts throughout have been everyone's love and concern and prayers. I can actually feel them physically - a strength not my own, a lift to my sometimes-dragging spirit. Contrary to what everyone says, I'm not that tough, and I am so everlastingly grateful for your shared power to ride this out.
So - it's on to the second half. Only two more chemos to go, and then maybe I can re-enter the human race. Bless you all for not leaving me behind.
I decided to take the bull by the horns and had my daughter shave my head. Everyone said I was going to lose my hair, and all said it was far easier emotionally to just bite the bullet and DO it, rather than waking up in the morning with my hair all over the bed, or clogging the shower drain. I've always held the philosophy that "hair is just hair," so the experience was un-traumatic for me, and my daughter and I laughed most of the time. We had fun "playing" with some hair pieces, hats, and scarves I'd pre-ordered on-line. She took pictures and posted them on Facebook, and the reactions started rolling in.
The next day dawned rainy and icy, so we had to cancel a trip back to the medical center for a follow-up injection of Neulasta. The purpose of a Neulasta shot is to build/strengthen blood cells, and it's another of those no-big-deal things as far as the injection itself is concerned. My daughter waited in the car while I ran in and had the shot, and soon we were off to a fabulous home decorating store to browse around. During our 20 minutes there, I noticed my energy beginning to flag and there was sort of a niggling little sharp pain in my right hip joint. Once again, I'd been told that I might experience some bone pain as a result of the shot, but no one said it would be unbearable. Now, I'm no wimp when it comes to physical pain - I've given birth three times, and have endured three other pretty painful surgeries, all with nothing more than maybe one shot of Demerol, followed by doses of Extra-Strength Tylenol. So it wasn't as if I were lying on the floor writhing in agony, or anything. But by the time we got home, the pain, albeit light, was radiating down my thigh bone and into my leg. It turns out that this was what I'd call "preliminary" pain, a preview of what was to come.
The process at the medical center is to call a Triage Nurse - anytime - if you have a problem, or if anything unusual happens. I called about the pain, and was given instructions about what to take and when. By this time, I'd sent my daughter home (2 hours away), as she was about to celebrate a birthday, and I wanted her home with her family for the occasion. So I was here alone through two nights and one day, with the pain just growing and not responding to anything I was told to do, medication-wise. By the morning of the third day, I was back on the phone begging my daughter to return. Admittedly, I was in a bit of a panic, and that, coupled with the pain, was making me feel icky all over. I didn't know WHAT to expect. I called my survivor friends. No one had experienced the state of pain I was in - and everyone who had had some of it said that the recommended medications and warm heat had helped. I tried, I really did. And the pain kept coming on and on and on. By the evening of the third day, all the heavy bones in my body felt as if they were on fire: my ribs, my spine, the bones in my jaw and my skull! I couldn't decide whether to lie down or stay on my feet. I couldn't find a position to be comfortable. I lost my appetite, but persevered with pushing fluids. Everyone said, "Stay hydrated," so I nearly drowned myself in drinking water and sucking on ice pops.
Through a snafu in communications, I was unable to reach even my oncologist, so in desperation, I called my family physician on the morning of the fourth day. We discovered I had pain medication from my earlier breast surgery. I hadn't taken it because I hadn't needed it, and when I read the label, the doctor said, "You can have that! TAKE it!" I didn't need to be told twice. I took the blessed pill and was sound asleep within 20 minutes! I slept for a solid two hours and woke up absolutely pain-free for the first time since the shot! If I could have, I would have gotten into the car and gone over to my doctor's office and kissed him square on the lips! (Which would have mortified him - he's basically very shy and proper.)
The pain began to dissipate over the course of the next three days, and then I was pain and medication-free. I felt like me, and I was once again able to go about my days as usual - driving, running to the post office, popping in at the grocery store - all while wearing a surgical mask over my face. (Advisable, because chemo can pretty well destroy your immunities.) I was able to send my daughter home after the first pain-free day, and life was pretty near normal once again.
I've now undergone my second of four chemo treatments - just as "dreamy" as the first - only I got two therapy dogs instead of one, and the harpist seemed to be among the missing. The guitarist was there again, practicing for a concert, and she played the entire time - and lunch was once again delicious. Forty-eight hours later, I went back for the dreaded Neulasta shot. The oncologist agreed to cut the dosage in half, and we decided to try some prophylactic non-inflammatory over-the-counter stuff in advance. Once again, my daughter sat in the car. I got my shot, and then we had a glorious time prowling through Trader Joe's and then K-Mart afterward. (!) Can't say I haven't had any pain, but it's 80% reduced in intensity and confined to my right lower leg. And my hair started to fall out that night. I scratched my head, and a shower of silver whiskers cascaded down my face. It was really kind of funny. I had Katie shave my head one more time before she left for home the next day.
Okay, so that pretty well synopsizes everything, and brings everyone up-to-speed. I told daughter Vanessa, who requested this, that she'd better pour herself a couple of cups of coffee before she sits down to read this one.
I hope I've portrayed this journey as accurately and honestly as possible. It has certainly had its highs and its lows, but nothing like what I've heard about over the years. Thank God, modern medicine is REALLY trying to make this as humane as possible!
Probably THE HUGEST gifts throughout have been everyone's love and concern and prayers. I can actually feel them physically - a strength not my own, a lift to my sometimes-dragging spirit. Contrary to what everyone says, I'm not that tough, and I am so everlastingly grateful for your shared power to ride this out.
So - it's on to the second half. Only two more chemos to go, and then maybe I can re-enter the human race. Bless you all for not leaving me behind.
