So, I've been out of hospital for nearly 6 weeks. What's happened next and how am I doing, you may want to know.
I was sent home with a walker (not a cane) with instructions to walk several times a day. But, my legs were so bloated with excess fluid (from the cancer on the lymph nodes around the veins, which is, it turns out, what basically started the clots).
The main health challenge that I've had since I've been home has been, sadly, mundanely, constipation. All the pain killers, plus the chemo, too, contribute to it. But, I've mostly got that under control, so let's move on, eh?
I could have had my first chemo session before I was released from hospital September 12. However, we decided to allow me a few more days to recover my strength, at home, and keep to the original schedule of September 28. It was a long period of time with legs so swollen I could barely get in and out of the bath tub (and I'm not a shower person!) it wasn't very easy going up and down stairs, either, so I limited myself to only one trip a day. I was carrying nearly an extra thirty pounds of fluid in my legs. But, instead of camping on the living room floor, we just set up the furniture so that I could have a single bed made from living room pieces. I spent a lot of time sleeping, on a lot of medication, watching mindless T.V.
So, the first chemo session came. Would you believe that, in the first three days, I lost 25 pounds?! (just peeing away so much excess fluid) It was amazing. My left lower leg continued (and continues) to be numb or fuzzy, but at least I could go back to sleeping in my own bed.
While I did feel some nausea, the three medications that I was taking seemed to keep things in check. I only had one very bad day: 8 days after the first chemo, I hurled six times. It's been nearly my only non-compliant day on taking my Coumadin, because I couldn't keep it down!
My sister Judy arranged for me to have an appointment with a special hair stylist. She's a 17-year survivor of ovarian cancer. She sells wigs and hats and cuts hair. So, before I had more hair cut off, Judy helped me to braid the top of my head into several small braids, with a rubber band at both the top and bottom. When my hair was cut, then, I had all these little braids to keep. I haven't had the pixie look in nearly 15 years. It was kind of cute, but it wouldn't last.
As promised, my hair began to 'fall' out. There would be bunches of it in the bath tub; I would comb it out (not unlike brushing a pet). After a while, I felt like I looked like a nuclear holocaust survivor, which was just too depressing. So, Sonja came over and helped me out by cutting off the rest of my hair then shaving my head. And, I became a total hat 'whore', making lots of hats and turbans.
An interesting note about the hair loss. They gave a saline solution to a man and told him it was chemo, and his hair fell out. So, it turns out, I was programmed for hair loss. When asking the oncologist about it, she said, oh, yes, my hair would fall out. But, my sister, Judy, helped, as well. She said, you know the chemo's working when your hair falls out. So, since I wanted the chemo to work, I've lost almost all of my hair!
My main form of Physical Therapy has been a return to walking. I didn't use the walker much, but once I got most of the fluid out of my legs, I began to take walks around the park. Much slower, though, less than 2 miles per hour. Never more than two laps. The gyn/oncologist wanted me to ride a stationary bike. I've taken my iron steed around the park twice, though, and know that my left leg isn't up to it yet. The fluid return isn't there, yet, and it just hurts too much.
Fortunately, my second round of chemo went pretty well. I knew more of what to expect. They start out with three drugs, to help you not react to the toxicity of the chemo. Two of those are Atavan and Benedryl. Now, I don't have a problem when I take Benedryl orally for bee stings, but the intravenous puts me right out. I had had insomnia the night before, so after the Benedryl, I pretty much took a nap. Now I know why, the first time, I don't remember much about that day. Turns out I'm there from 9 to about 4, but it's la-la land for me!
Last week, I had my fifth ultrasound. She did both legs plus the abdomen. There are still clots in my leg and I'm very concerned that the damage to the left leg may be permanent. I know that the pulmonologist has said that, when a vein becomes too stretched, it loses its elasticity and the valves won't close. My left leg is still two inches larger than my right leg, is numb or fuzzy feeling all of the time, from the foot well up into the calf. It's just too depressing.
Monday, we rearranged the furniture in the living room, so that the tread mill is once again available. With T.V. to watch, I don't mind walking a little farther (not so boring), especially at a lower speed (making it possible to walk farther... when I walk too fast, it really burns).
So, they say that, when you have a hysterctomy, you have instant menopause. Now, I'm not much into positive affirmations (which, of course, I'm supposed to be doing, now!). But, for literally years, I have been giving myself the affirmation of "I refuse to have hot flashes" I just wasn't going to have them. In all those years, though, I forgot that I was supposed to program myself for no night sweats.
In between the two hospital stays, I actually started to have night sweats. I think it was the beginning of actual menopause. But then I was 'spayed' on September 6.
I would have thought that, if I was going to have menopausal symptoms, they would start right away. But, no, it took six weeks for the hot flashes to begin. About one every hour. Even waking me up at night. How's that for irritating? Judy have given me some herbs that will, hopefully, help take care of the flashes in about two weeks.
Donna lent me her book, Love, Medicine and Miracles by Bernie Seigel. It's a great book, about how to become an ECap, an Exceptional CAncer Patient. How to choose to live. But, it's very hard. I've got lots of anger that I haven't begun to express and I see (more) clearly how, in choosing to have cancer, I'm looking for the easy way out of some hard choices. I now have to decide just how much work I want to do in order to live.
I was very depressed at the prospect of having my lower leg issues being permanent, as the pulmonologist believes. However, I saw the gyn/oncologist yesterday, and she says that the remaining fluid in my leg is lymphodema, not necessarily permanent damage or clotting issues. After all, she did remove several lymph nodes and several others are still waiting for the chemo to work its magic.
They're working on getting me into a program called "I Thrive" - I would then begin some physical therapy and a more formal excersize program. I'm also looking into finding a support group.
I was scheduled for my third chemotherapy on November 7, but my white blood cell count was too low. They gave me a week, to see if I would improve but, again, on November 14, my white blood cell count was too low.
It was then decided that I would begin taking Neupegen shots. You've seen the ads on the tele for Neulasta; Neupegen is its precursor, daily shots instead of once a month. I was given several days of shots and scheduled for chemo on November 18.
I was a little side tracked on Thursday, November 17, when I had a sudden onset of intense abdominal pain. I was advised to go to the emergency room, where they never did figure out what it was, but a shot of Demerol brought me back to feeling human again. They ran another CBC, though, so that I knew I was good to go for chemo the next day.
So, my third round of chemo was delayed 11 days, but I'm on track again. I'm going to get regular Neupegen shots for the duration of the chemo (ten days, beginning three days after each session). I'll also be moving my chemo sessions back to Monday, beginning December 12.
I've got low-level nausea going on a lot now, but thank goodness for medication. I've also been tired a lot (don't know if it's a hold-over from the cold, from the low white blood cell count or just the chemo/cancer thing). But there is good news. There are tumor markers that they test for when they draw my blood, and the trend is down. That would appear to indicate that we are, in fact, winning against the cancer!
Plus, my family has generously decided to scholarship me into the "I Thrive" program, so I begin the evaluation process on Tuesday, November 29. Getting training/excersize and a kick in the butt should probably help with my level of energy (I hope!)Battle with the Silet Killer