Charlavan's Story

I THOUGHT….. You can’t be serious. Breast cancer happens to someone else- someone who hasn’t had regular mammograms or who has a long history of cancer in the family. There are lots of reasons why it couldn’t be me. I don’t drink, smoke and hardly even swear except lately (and only for emphasis) I have lots of things left to do. We all assumed I would out-live the whole family. This wasn’t happening to me.

Yep. Me.

I have had lumps in my breasts for 20 years, but they were a fibrocystic condition and every doctor who looked at them had reached the same conclusion. They kept changing in size, got sore, went away, swelled again (occasionally became inflamed) but had nothing to do with cancer. The reason I even went to the doctor just before Christmas last year was because one of them in the right breast was enlarged, inflamed and annoying. I had the doctor take another look at it even though I had had mammogram just scant months before that. We decided to do it again. However, I went on an antibiotic to see if the swollen lump would respond, indicating it was a little inflamed.

The pictures showed the lump was there all right but was reducing in size and it was just that – an inflamed cyst. Since it resonated, we were sure it contained fluid and not a problem. But there was a shadow in the left breast that was harder to identify if indeed it was anything at all. The tissue was dense and there were no visible edges to the possible lump.

The doctor was comfortable in assuming that it was nothing to worry about but suggested we have someone else look at it. He said there was no hurry but after Christmas sometime I should call the surgeon he suggested and have him look at it. I called him in January and he couldn’t see me until February 10. Again he looked and said "It is probably O.K. but I will get the opinion of someone I really trust to take a look at the pictures." The considered opinion was to have a biopsy.

When I arrived for the biopsy they started the procedure by scanning the breasts first and started to prep the RIGHT one. I said, "No, it is the left one that is suspect." "No, the instructions read the RIGHT." The ‘last word’ on this was actually evaluating the left one but the instructions were written wrong. The actual culprit was all but ignored. At any rate, they gave me a mild general anesthetic, which only lowered my blood pressure but didn’t deaden the area or me. I am an unpredictable "putter outer" but it was tolerable and over quickly. (Sounds a little like a high powered staple gun.) Guys love guns.

I again waited for a week for the results and when I called the office to get them they asked that I come in and talk to the doctor. First clue. Then when he arrived at the examining room he came in with two other doctors. Second clue. One was a family counselor. ---Turn out the lights. The party’s over.

He said, "I am afraid the news is not good. It is not only cancer, but a very aggressive type and all of your options involve surgery. In fact, since it is right under the left nipple and we don’t have the option of a lumpectomy but it will have to be a modified radical mastectomy and we will lose the nipple. It was already large and growing rapidly. Your real options are just whether to have reconstruction or not and if so, which method you prefer."

"We can have them insert an implant or you can choose to have a beast built from your own tissue from the stomach." He then examined my stomach and said even that option was not a given since we need maybe more fat than I had. (A first for me.) He told me to go home and gain some weight and have a plastic surgeon look at it right away.

I have always had a morbid fear of having a breast removed because when I was young, I had an aunt (no blood relation) who had died from breast cancer and that was AFTER the operation had left her mutilated. I had visions of my aunt when all of those words tumbled out of the doctor’s mouth. (I learned later than one of my grandmothers had also died of breast cancer but didn’t know that at the time.) They have improved the procedure now of course, but I wanted nothing to do with the whole thing. I was just sure that as soon as I gave them the OK to cut, they would come up with a miracle cure.

Women shouldn’t be asked to give up their looks and health at the same time. In our culture there is a bigger than life interest in that portion of the anatomy. I had no trouble deciding on reconstruction so I called the plastic surgeon. It was now Friday and I couldn’t see the doctor until Monday. It was a long weekend but I consumed about 10,000 ‘fat calories’ and didn’t spend any of them except on a modicum of worry and anxiety.

When I did see him though I had about resigned myself to the fact that I was not going to risk dying with this thing, which the first surgeon had assured me would be my other option. This plastic surgeon was at the top of his field and I had no qualms about taking his advice. He said that the T.R.A.M. flap reconstructions would produce the best results since building a breast out of your own tissue would be more apt to match the remaining breast and it would involve only one operation instead of several. When we finished with the left side he would then reduce the right side to match it and that is what we decided to do.

Again we had to address the stomach fat issue and he concluded that he could get probably a C- but not a C+. Great. He explained that he would be removing some muscle on one side as well as the available fat because fat doesn’t contain a blood supply.

The first week I put on 5 pounds and could have played middle line backer for any respectable team. We were still 10 days away from the scheduled surgery and counting….(With all those doctors and that much time needed for the operating room that was the best we could do.)
I am an artist and I painted furiously during that time, trying to lose myself in the work and it was a Godsend. Staying busy is an absolute necessity.

The big "O" turned into three big operations and I can tell you for sure I wasn’t ready for that. When I first decided to write this I had two things in mind. The first was to quell the fears of anyone who was facing the same issue. With that in mind I intended to keep it all very positive but informative. But there are some things between ‘frightened at the word cancer’ and ‘gee, it is all over and I am fine’ that aren’t all that much fun. The second was to give me a project and a vent mechanism. I also knew that if I had been able to see pictures of someone else it would have been easier.

If I know what to expect, I will adapt and won’t be afraid. Well, all of that ‘adapting crap’ is just that. It does hurt. General anesthetics are dangerous any time but along with the natural dangers they impose are some very annoying things they may or may not be responsible for. As I sit here almost a year later, the bottoms of my feet are still a little numb. No one is this medical circuit claims any knowledge of it so maybe it is just unique to me. The most logical explanation came from a friend who happens to be an anesthesiologist. He suggested that perhaps I wasn’t moved often enough during the long surgery and a nerve that supplies feeling to the feet was damaged.

Also, one of the most irritating things you endure even though it is only for a few weeks are the drainage lines that you wake up with from the surgery. I had two in the lower abdomen and one under the arm. They have to be addressed and emptied several times a day and night and you WILL catch those lines on something regularly and they will ‘spill’ regularly. Now you just know these are necessary and short term but they ARE hard to dress around. The only saving grace is that you feel so crappy most of that time it isn’t quite such a big deal in comparison.

For the T.R.A.M. flap they remove a ‘flap’ by cutting a line from behind the hip bone on each side, down to the hairline, then another curving line above the belly button, removing the flap and re-joining the lines. They make a new belly button! You wake up with the tummy of a 12 year old but one in a good deal of PAIN. They configure a breast out of the flap they removed and reattach the supply lines. It was beautiful…….for 8 days. Then it turned black and died. The doctor was successful in getting the blood to supply it but it would not ‘return’ so it collected.
I was operated on Tuesday and released from the hospital on Saturday afternoon. On Monday I went to the doctor’s office to have him check it. His first words were "WHAT HAPPENED??? SOMETHING WENT HORRIBLY WRONG."

Now I will admit that the color was suspect since it went from blue/red/purple to something bordering royal burgundy but there was so much bruising I really didn’t know what to look for to determine that everything was not going well. I did know I had had a bad night on Sunday and the breast seemed to be growing!!! But no, I didn’t know there was anything wrong. The doctor had performed this operation hundreds of times in 20 years and it had never happened. I had and still have great faith in him. He was crushed. Me too. He said in all that time he had ‘lost’ 3 or 4 but all within 48 hours and with those it was evident from the start. This, however, looked like a great job and he suspected nothing.

He started puncturing the center of the new breast with a very large needle. It looked gross but didn’t hurt. In fact, he did this in the office after calling the hospital for a quick admittance. Then he said something I thought surely I had misunderstood but it SOUNDED like ‘then we will have some leeches flown in.’ Some ‘not for your ears’ medical term??? NO, real leeches as in African Queen.

When the additional hole punching and abrading didn’t work, we started "leech therapy". (The leeches fill themselves with the blood from your body and this sucking action will often make the blood flow sufficiently to re-establish the supply and return lines.)

This procedure involved cutting the bottom out of a Styrofoam cup and positioning it over the breast. When it was taped in place they would place a single leech in the cup. It’s only job was to have a party and feast on my flesh. It was the main event at the hospital and at times there was standing room only. My gallery and I named them everything from Horatio to Monica. We recorded their progress for four days and they were replaced every few hours when they were full. But on the fourth day we stopped because they had overworked the area so much they were crawling out of the cup and onto other parts of my ‘tired-of-it-all’ body.

By this time we were closing in on two weeks since the original surgery and we went back into the operating room to remove it and start the process for a regular implant. This would involve putting in place an inflatable device that would be used to stretch the skin enough to hold the implant (just what I was trying to avoid in the first place because it would now take longer and with lesser results.)

One more time I had to go back onto the operating table when the sutures became infected after the second surgery. The doctor had to cut along the incision, irrigate the site and sew it up again. The only good thing about this is that the surgeries were scaling down in magnitude each time.
The tumor they removed was about the size of a thumbnail and the cells had also migrated into several lymph nodes under the arm, etc. so the recommended treatment was chemo therapy. Radiation works best on smaller and more contained areas.

I started chemo while we were waiting for the final operations. I was admittedly scared of this. It was not simply because I knew it would make me sick and I would lose my hair, etc. but I have a very delicate chemistry balance and I figured it would be difficult to tolerate. I routinely refuse drugs if they can be avoided. They schedule you for four sessions of treatment and these are three weeks apart. The oncologist had told me about when to expect my hair to fall out and I waited for a couple of weeks and shaved my head. It was much easier for me that way than to wait and watch it go. (I think it is a little control issue.) It had started to become very brittle and it was time.

In my case they used adriomyacin and cytoxin. It is administered through an IV after ample blood work. They start with just saline solution and anti-nausea medication. Then they slowly inject the first of two cocktails into the shunt they place into your arm. It is very important that the fluid doesn’t seep out onto your skin since it would cause a severe burn. They follow that with more saline to push it through. I reacted to the second with some itching and burning at the site but they gave me what seemed like about a liter of benadryl and I walked out. (I don’t remember much of that part abut I was in no pain.)

The rest of the day I felt surprisingly well (until the anti-nausea med wore off.) Then I got sick. They say some people actually never throw up during this part but I wasn’t one of them. They have some very good medications for that now, but they aren’t without side effects. I stopped after taking the first one. (They are also VERY expensive.) Even the meds I had been taking for pain now would make me nauseous. That subsides somewhat after about the fourth day. I even tried to smoke a couple of joints but I did a laughable job of that. I am pretty determined to "try everything’ and even more so once I decided I was mortal.