My Story: Charlavan Baker Hart

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 a mammogram just scant months before that. We decided to do it again. However, I started taking 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 see what he thinks. 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 real 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 nor 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 we don’t have the option of a lumpectomy. It will have to be a modified radical mastectomy and we will lose the nipple. The cancer 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 breast built of your own tissue from the stomach.” He then examined my stomach and said even that option was not a given since we might need 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 that one of my grandmothers had also died young of breast cancer but I 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 afraid 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 knew I could not 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 (Transverse Rectus Abdominis) reconstruction 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 of my abdomen, 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. Plastic surgeons love the before and after shots but … “no, we don’t”. I wanted someone to give me answers to all the questions I had; not all of which were geared to medicine.

If I know what to expect, I will adapt and won’t be afraid. Well, that helps a lot but it still is going to hurt (just not forever). 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. 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 (eight hours) and a nerve that supplies feeling to the feet may have been 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’ often. Now you just know these are necessary and short term but they ARE hard to dress around.

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 had the surgery 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 that wasn’t ‘to be expected’. 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.’ Maybe 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. Its 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 larger than my thumbnail and the cells had also migrated into several lymph nodes under the arm, and neck so the recommended treatment was chemo therapy.

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 the chemicals they injected were 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 a liter of Benadryl and I walked out. (I don’t remember much of that part but 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.

Some of the problems that are common with chemo and which are underplayed are these:

• Your mouth gets extremely sore. The tongue wants to split and the inside of the mouth from front to back is ulcerated. It stays that way until long after the chemo is finished.
• The saliva turns to glue and that too stays well after the procedures are over. But that is also caused by the pain meds.
• Since you are deprived of any and all estrogen you can have almost constant hot flashes.
• The hands in particular get sore and the nails and teeth have a tendency to separate from the beds. I even had some damage to the tooth enamel. Nearly everything repaired itself in time except in my case there is still soreness in my hands.

It is not for sissies. But also, it is not the same for everyone. This is just what happened to me.

Ten days after the chemo treatment you go back to the doctor to have your blood checked. My white count was low after the first one but didn’t require a transfusion. However, after each of the next ones the count dropped so low we had to wait and build it up before we could continue.

That means Nupigen shots to build the white count. I could administer this myself after the first one but they go to the bone marrow and can be very painful.

I finished the chemo the last of July and scheduled the implant surgery for the first part of September. The doctor did a reduction on the right breast at the same time as the implant. My hair started growing back in November and came in very curly. When it came out it was not that way but always ‘wanted’ to curl. It came in the same color, which I understand is not always the case. It would never be exactly the same thickness and texture, but I assumed some of the follicles were just tired of the abuse.

The only other surgeries have been to re-build a nipple and when the first one flattened out completely the doctor wanted to do a skin graft from my hip for the second attempt. That is the site he used to make the areola for the pseudo nipple. That harvest site is now the center of a daisy .

Writing this as it happened was cathartic for me. It is over……I feel blessed in so many ways but especially at the over-whelming love and care I received from family, friends and total strangers too numerous to mention but never forgotten. Part of my good fortune is that I had that support system but for anyone who doesn’t, I can’t impress upon you enough how important it would be for you to join a support group. It is also a great idea to have family attend with you. The friends you make there know many of the answers to your forever questions. You will gain great strength from that and can offer them the same.

I started to work within a month of the last surgery and I highly recommend going to work at something as quickly as possible. I was still bald as an eagle when I started, but I felt fine. Figuring out ways each day to decorate my head tested my artistic talents. (One day it was a full-on abstract painting in acrylic paint complete with rhinestones!) I worked in a totally new environment with a lot of people interested in my progress and transformation. They took it on as a community project. We celebrated my new hair.

The most quotable quote I remember is one from my grandson who was four at the time. For several weeks after the surgery he would try to get me to play ball, jump on the trampoline, ‘catch’ him as he came flying through the air and I just couldn’t do those things for a while. He was tired of hearing it so he said, “What did they do to you anyway?” “They cut off one of my boobies.” He turned around and to no one in particular, mumbled “Boy, that’s gotta hurt.”

He never mentioned it again but he was right. Now it doesn’t hurt.