It's been a while since I posted...

Oh, yes, it has been a while. Maybe because the chemo thing is over and the surgery is over and now is the time to just work on healing.
I was talking to a co-worker last week about my cancer experiences. I don't see Dave very often on the PET/CT coach so we're not as close as Kristen and I are. Plus, it's just his personality to be a little more reserved. Dave is a really nice guy; very polite and considerate. My cancer is often the elephant in the room and I could tell that he had questions but was too nice to ask them. So, at one point I told him to ask away. Having this blog and sharing so many things on it has made me willing to answer any and all inquiries. Turns out that Dave was not especially interested in the nuts and bolts of cancer - side effects, treatment plans, etc. - but in how I coped, emotionally. Boy, when the guy opens up, he's got some real probing questions! I liked it. He wanted to know how I lived with having cancer. What I thought about the future. Whether I thought about dying or being really debilitated. These are questions I've certainly grappled with but to put it into words was sort of like honing my whole philosophy about cancer. It was a good exercise for me and I thank Dave. Here's my basic answer - keep moving forward! And, assume that things will turn out great! Keep doing everything that you can possibly do to fight and be as positive as possible. Think more about all the great things you'll be doing when all the treatment is over not about what you may have lost. Because, ultimately, cancer is not something that anyone wants but it sure has given me a new outlook and I'm thrilled to have an absolute mandate now to do more and be more!

Like Getting Blood from a Turnip

A few months back, my oncologist told me about a Hopkins trial that I was a candidate for. Dr Tuica said that my cancer cell type and treatment program fit the criteria for the trial, run by a doc friend of hers. I called up the Hopkins doc and we spoke at length about what would be involved. It sounded like a big time commitment, but since this is my Year of Breast Cancer, I decided to sign up for the trial. Not only did the treatment on trial have a strong possibility to actually do me some good, but I would be doing my small bit to help advance science! So, I made an appointment and went to Hopkins. The first wrong note sounded when the folks at the registration desk asked my for my insurance information. Why would they need that? I was there for a clinical trial, not treatment. I asked, but the clerks at the desk didn't know why; they were just doing their job of not letting anyone past the portal without insurance info on record. I had my vital signs checked and some blood drawn. The investigating physician conducted a long, detailed interview and sent me home with a thick sheaf of papers. My signature was need on the informed consent document, but it was much too huge to get digested at the interview. The next step was to go home and sign all the forms, then return for some additional set-up procedures (like testing to see if I would be allergic to any of the reagents used, etc.). The second wrong note sounded during the interview. I asked, unnecessarily I thought, if this would cost me or my insurance company. The doc said that they would only bill me or my insurance company if, during the trial, they did any therapeutic medicine. I tried to pin her down a bit, to see what that meant. Sounded like no- no charges would be billed because, after all, this was a trial that I agreed to participate in out of the goodness of my heart, not a required part of my treatment. The whole issue cleared up nicely when, a few weeks later, I received a bill for $380.00 with $1,330.00 'pending'! Whoa! I had no idea that participating in a medical trial can cost you money now! I remember the day when the participant got paid a small stipend. Apparently, those days are over and the docs need your money, as well as your body, to do a trial. I called the billing department and protested and am now waiting for my 'appeal'. I think that good ole JHH will have a great deal of trouble getting any money out of me. I didn't need that stinky old trial anyway!

Hair!

Shaved my legs today for the first time since December 2009! I also have eyebrows and eyelashes again. The hair on my head has almost grown in enough to look like a hairstyle, although nobody outside the military has a hairstyle like it. I'm starting to look normal again. But, as David reminded me the other day, I'll get less sympathy with hair than when I was bald. That's OK, I glad to be getting normal again.

Some Good News For A Change

First of all, I am recovering really well from the double mastectomy I had on July 7! I went on a mountain bike ride in the woods yesterday. 'Nuff said.

Also - and this is really good - my surgeon said that, because I had such a positive response to chemotherapy, that my prognosis (my long-term survival) is getting better and better!

Last, but not least, I was told yesterday that I am an inspiration! My friend K. and I were talking on the phone. She told me that women are universally afraid of getting breast cancer. That, I knew. But she said that I am getting through all the treatment and misery in such a fine way, that she is now not quite so much afraid of it. Breast cancer is not so scary. Wow, that is so significant, so meaningful to me. Almost makes getting breast cancer worthwhile...

Blow Out, but with a happy ending!

I think I inadvertently awakened a demon. Nah, that's not true - I am, in fact, an Oxycodone addict! Well, OK, that's not it either! But, it certainly has been a wild ride around here over the past 4 days or so. Here's what happened. I was taking Percocet (Oxycodone plus Tylenol) for pain after my double mastectomy on July 7. Highly necessary to have good pain relief after that! I was also doing my physical therapy exercises, natch, and they hurt. So, for a couple of weeks I was taking Oxy round the clock, albeit a small dose. Then, about a week and a half ago, I decided that I didn't really need it anymore. Interestingly, the only pain I was having at that point was related to being stiff after being in one position for awhile. David says the stiffness is related to the adhesions that can form around a surgery site. Anyhoo, a little movement and the stiffness goes away. Voila! Not wanting to put any more chemicals in my body than necessary, I stopped taking Oxy. This past Thursday, I noticed that, emotionally, I had been feeling worse and worse even though I was feeling better physically. By Friday evening, I was in a full-blown depression. Yuck! Complete with extreme anxiety and sleeplessness. I was crying just about unendingly and scaring the heck out of everyone around me - and especially scaring myself! I had not felt this bad for 16 years, not since I was finally treated for my long-time depression. Hence the "awakening a demon" comment. It's kind of funny that not too long ago, I had mentioned that past depression in this very blog. Did speaking (writing) it's name make it come back? Well, no. Since my psychiatrist is the keeper of my equilibrium, so to speak, I dialed her up. Sure enough, it turns out that a small percentage of people need to taper carefully when stopping Oxy. Not one of my other docs told me this. Stopping sort-of quickly can cause the miserable trifecta of depression, anxiety and insomnia. She advised me to take an Oxy pill immediately and see her the next morning where she gave me a schedule for tapering. off. Within an hour or two, I felt better. So much better! I feel normal again. Not that I won't have times of sadness - not that I won't cry. I do, in fact, have some mighty things to cry about. But, I am back on the track of standard emotions which, for me, is a wonderful place to be!

Here's a tip for anyone having an upper body surgery: do your sit-ups! You need your abdominal muscles and leg muscles (especially quads) to get yourself out of bed or off the couch. Even if you are 85 years old and have never done a sit-up or a squat in your life, talk to your doctor and find out how to do some exercises that will help you be a little more independent after your surgery. If you are reading this, you are already online, so look up some moderate, beginner exercises.

After my mastectomies, I was very grateful to my stomach and leg muscles for being able to propel me out of bed without a lot of dragging and pushing from others. It really helps to not have to wait for someone to help you go to the bathroom. These are things that your surgeon will never tell you. But I am!

I always cry when I get a shock. I cry if it's a good shock, like the time Alex told me that Daria was pregnant, or when I get a bad shock like the other night when I saw myself in the mirror for the first time since the surgery. I had been scrupulously avoiding mirrors but the bathroom mirror wasn't turned to the wall as usual. Fortunately, I didn't have my glasses on and my 20/400 vision doesn't allow for sharp details. What I saw in the mirror didn't register at first. You know, when you see something awful you go "What Is That?"? Then, I screamed and started to cry and sob and wail. Instead of luscious, creamy mounds I saw a concave chest with ugly, livid purple and brown slashes. There were nebulous bumps here and there as an added feature. It's not as if I didn't know that my breasts were missing - of course I did! But, to actually see it in the mirror was shocking. Poor David was trying to comfort me and hugged me which made me cry harder because there was nothing now between his chest and mine - just air! Oh, gosh, I felt so bad. I looked like an alien, a monster! I briefly considered that, if I took all my Imipramine and all of the Oxycodone pills I could probably die without feeling anything. I'd just go to sleep and all would be over. But then I realized I'm not made that way. I could never, ever do that to Olivia and David and my sister and brother and friends. Besides, I want my tombstone to say something other than "Here Lies Jane - She Died of Vanity"! Before I was all cried out I remembered that this was by far not the worst I've ever felt. Until age 38, I had undiagnosed clinical depression. It peaked at around age nineteen and then again at 32 or so. Those times were so scary. It was frightening how unrelentingly bad I felt. Most of the time, I lived in a dark empty hole. Figuratively, of course. Voices in my head kept me awake at night sometimes. Often, there was no pleasure in lots of normal things that people enjoy and no confidence in myself. Thank goodness for modern psychiatric chemistry. For almost twenty years now the depression has been at bay and life has been good.

I will get over myself and feel better about my appearance - sometime soon. Maybe, next year, I might be able to get some reconstructive surgery. Or maybe not. My life is precious and I am so glad that, even though I have had cancer, I will go on living for a long, long time!