Waiting

It’s Wednesday evening, and two days have gone by since I met with my surgeon, Dr. D, on Monday morning. It was a 3 hour visit that left me with lots of information about what she thinks needs to be done (the most disturbing part of that being taking sections of the lymph nodes), what could go wrong, and the unsettling news that I appear to have a large mass outside the uterus that reaches up almost to my belly button. But for that newly discovered mass, I would have been a good candidate for their less invasive robot-assisted surgery. Because of that mass, she’s leaning strongly towards a traditional hysterectomy, with a nice belly button to pubic hair incision. Good thing I’m not into bikinis anymore!

I’m sure the detailed explanations of what could go wrong are there to protect them from lawsuits, as well as to head off your being totally surprised if, after your surgery, you find that one of those things has actually happened to you. The percentages of its happening are small (mostly in the range of 1-10%), but I still left with my head full of the bad things that could happen, most of which could result from the lymph nodes part of the surgery. A bit of a downer, to say the least.

I also learned that we don’t know much about the cancer at this point. It looks like it is a high-grade (meaning aggressive) cancer. We’re not sure where it is, since the sample tested was quite small. We don’t know if it might be spread around. She did say a couple times that it’s not unusual to find cancer outside the uterus when they get into the surgery, because of the (literally) fluid environment in there.

Among other things, I am learning the vocabulary for explaining cancer:

Type=tissue or muscle (I think; there are words like sarcoma, carcinoma, MMT, as well as well differentiated, moderately differentiated and undifferentiated floating around there too)
Grade= how aggressive the cancer is (high-grade is aggressive, and that’s me)
Stage=how far the cancer has spread beyond the primary site (unknown now for me).
Stage I would be contained in the uterus. Stage II would include the cervix. Stage III would involve the Fallopian tubes or ovaries, vagina and/or lymph nodes. Stage IV would involve organs beyond that.

Dr. D referred me for a CT scan (I know it as a CAT scan) of the abdominal area, which exciting procedure I got to do Monday afternoon. First, ingest two large glasses of orange liquid, which tastes like a cross between coolaid and something just a little sour. Not bad, but not tasty either. Anyway, drink that down as fast as you can, because they need to wait 30 minutes after you’ve consumed it to do the test. Then get hooked up for an IV, which allows them to send a contrasting liquid into you so they can differentiate vessels from organs. Now, lie down on a couch which has a large plastic doughnut around it, and wait for it to move over you, while the mysterious (and very pleasant) male voice says “Breathe in, hold your breath” and then finally, “Breathe!” Several of these little runs later, my cheerful (he really was) technician bids me adieu, telling me he’s trying to make the experience as pleasant as possible because I’ll be sent back for a follow-up several months after treatment. He had a great sense of humor, and he succeeded—I won’t mind going back. Except for that liquid.

Tuesday was waiting day—expecting to be called by Dr. D’s office about when the surgery would be scheduled. No call, and I was feeling suspended, wanting to be able to plan my life next week around that surgery. On Wednesday, still no call. But a great visit Wednesday afternoon to my “2nd opinion” surgeon Dr. F, nationally known, and as it happens, the person who trained Dr. D. He thinks highly of her—both her surgical skills and her decision making, so that made me feel great. He basically confirmed that he would follow the same course she has recommended, gave me a little more of a lesson on various kinds of cancer, and also said he’d like to stay informed and would be in my corner to fight for the appropriate treatment if Group Health balks at the recommendations that come following surgery. What a great feeling—I went home feeling I was in very good hands.

The last piece of what I regard as “my team” fell into place this morning. I have connected with a naturopath, who is actually on the approved provider list for Group Health (as my acupuncturist is NOT), so will get a little relief in the cost of working with her. Except for my 2nd opinion physician, I have an all female team, and I’m delighted. Hooray for the advances in professional independence for women!! Dr. O sounded like she will be great to work with. She sees herself as a coordinator of my overall care, supplementing the medical care with nutrition both during treatment and after, providing emotional support and filling in other areas that are sometimes not addressed. She’s knowledgeable about medical treatment protocols and very careful to be sure that whatever she’s recommending in the way of supplemental treatment doesn’t interfere with the types of radiation or chemotherapy they’re using. So even though my surgeon is quite equivocal about these supplemental types of support (doesn’t mind cooperating or sending them information, doesn’t think they hurt and not sure that they help, and doesn’t see herself as part of a “team” with them), I think I can get what I need from the resources I have gathered.

So I’m feeling good. Just need to pin that surgery down! Tomorrow I see my Chinese medicine/acupuncture specialist for the first visit. First visit to the naturopath is Tuesday.

Now for some of the more psychological aspects of the last few days. I’m getting calmer as the days go by. I’ve slept better the last few nights. My blood pressure is getting back closer to normal range. Each time I’ve been a doctor’s office, they take my blood pressure, so I’ve noted that whereas my normal range in recent years has been in the 120”s/60’s range, my visit to the Group Health gynecologist had me pegging in at 143/83. A week later visiting the surgeon I was up to 150+/80+. But today for my visit with Dr. F, I was back down to 127/82 or thereabouts. It’s amazing what anxiety can do to you. My weight has also been going down on each visit. I was down to 127 pounds today, and started at a little over 131 a couple weeks ago. It’s probably due to the diet adjustments I’ve made, so I’d better make sure to eat a little more heartily.

I have filled out my medical history at least four times in the last week. Thank goodness I haven’t had many illnesses and don’t take any medications. If I did, it would take forever to dredge up all that material over and over. I had passing feelings of being a cog in a very large machine, being shoved along the conveyor belt. The attitude of the staff in each of the offices makes a huge difference in counteracting this feeling.

I have also come to a new understanding of the words “living with cancer.” I had heard that phrase, and always thought of it as telling you that cancer is something that once you have it, you are never totally free of. But I have discovered in the last week that it’s also a presence that intrudes on your thoughts constantly. I have found myself seeking activities that will give me a good solid 15 minutes where I don’t think about my cancer. The best activities are ones that keep me “cancer-thought free” for even longer, like our tango lesson last night. I am sure this will change over time, but it certainly becomes a huge presence in your life. Imagine anything else that would think about that frequently, and the impact it would have on you.