A Journey Through Cancer and Back:Part Two

Part two....seems like so many more parts, but here goes.
I was very faithful about getting my mammos every six months for the first two years, and then because there was nothing new or exciting, I was able to have one a year after that. I was good about it, but after some very difficult times in 2004, I let things slip. I had a mammo that year before everything in our lives slid into the Year From Hell. My mother died from emphysema in March. My grandson had six surgeries in five weeks in the summer, between June and July. He is shunted for hydrocephalus and it failed. Repeatedly. His story is for another day; maybe a book. He went from walking independantly to using a wheelchair. We nearly lost him during this time. He was at home using a hospital bed for months. We rearranged our family room to fit it in. He was so sick. And in so much pain. We spent many nights watching "Fly Away Home", a movie about a girl who rescues Canadian geese eggs, raises the hatchlings and releases them back into the wild. The music is very beautiful and peaceful and  Adam would just watch and listen and sometimes miraculously drift off to sleep for a time. Physical therapists told us he would never walk again. (They were wrong!)  But God was there through all of it. He never leaves us or forsakes us. He is the comforter and the lifter of my head. There is more, much more, but these are the highlights. I had no time for the next year to do much of anything but take care of Adam.  He got better over time, but in 2006 he had more shunt problems and three more surgeries and we nearly lost him again. I justified putting  my own health  needs on the back burner. Never do this.
In 2008, in the spring, I finally went for a mammo. It had been 2 1/2 years since my last one. I was lectured  and reprimanded by my gynecologist, and by the girls in Good Samaritan Hospital Breast Care Suite. But as usual, they took excellent care of me. I had my mammo and went back out to the waiting area until my results came back.  Then: they needed more films. They also wanted to do a fine needle biopsy on one of the cysts in my left breast as it did not look good. So sure, fine, go ahead.
The results of the needle biopsy were fine. The repeat mammos were not. I had more micro-calcs, and they were very concentrated in one area. Not a good sign. I needed to come back for another stereotactic biopsy. (sigh) o.k.
A few days later I was back at the hospital for the test. They took TWENTY tissue samples. The radiologist does this test and she looks at it right away. She sat and talked with me for a while, and the lovely nurses did too. I can't say enough good things about the people who work there; they are kind, compassionate and sympathetic. They hold your hand and rub your back and talk to you while you go through your stereo procedure. They are hand-picked for their jobs and I think by the Lord. Theirs is a gift of empathy that I have rarely seen anywhere else. Thank God for them and the difference they make in the world. The radiologist told me I needed a surgeon once again, and it didn't look good. She really didn't want to say more.
I wanted a new surgeon after the last time, and they gave me a few names. I decided to go to the Carol Baldwin Center instead. There I would find every specialist I needed under one roof.
Gosh, I feel like this story could go on forever. I will be brief.
I found a wonderful breast surgeon who directed me to an oncologist. They both took very detailed histories and asked many questions. I discussed my bleeding problem the last time, told them that one of my daughters has Von Willebrands factor, and asked for help. I got it. Both doctors were amazed that no one had ever paid attention to my history and checked into the problem any further. There was a definite trail that was easy to follow if a person took the time to really listen. I now take a medication called DDAVP before I have any surgery and I don't have any problems. So simple. So important.
Dr. Palmeijer (pronounced palm-air)  did my breast biopsy. She was kind and very thorough. I made an appointment to get the results on my birthday. I was fifty-six years old. I had cancer. Life changed in an instant.
The good news is that the type of cancer I had would rarely mestasticize, and I was at stage zero. I had DCIS----Ductal Carcinoma In Situ. Big words that mean I had cancer in a milk duct and it hadn't spread out of the duct to any other area of my breast. I had two choices; have a partial mastectomy and five weeks of radiation, or have a total mastectomy and no radiation. The main concern was for speedy surgery as the lesion was very near to my chest wall, and waiting would give it the chance to spread elsewhere. Dr. Palmeijer also suggested I have a radioactive dye test for my lymph nodes before the mastectomy (if I chose that option) to see if there was any chance that the nodes had been affected. This test can't be done after a mastectomy as the dye has to be injected into your breast in order to travel into the lymphatic system. So of course I agreed to have it done. And I decided to have a mastectomy; I did not want to have radiation. It seemed like a bad choice to me,considering I had already had a partial mastectomy, and the radiation can have adverse effects on your heart and anything else in the surrounding areas.It can also be very debilitating and have lasting effects on your energy and health. You can have reconstruction for a partial mastectomy, but I figured since I already had atypia and now dcis, the chances of getting cancer in that breast again were pretty good.
I also had a consult with the plastic surgeon. He told me about the different types of reconstuction that were available. I won't go into much detail, but I opted for reconstruction from my own body; no implant. Skin, muscle and fat from my abdomen would be used to make me a new breast. As it would be from my own body there was no chance of rejection. I could have the work done immediately after the breast surgeon finished my mastectomy. I  would wake up with a breast instead of without one. I liked that idea.  I thought I would be forever done with surgery in one hospital stay.
I didn't like the eleven hours it would take for everything to be accomplished. I wouldn't be aware of that anyway. But Paul would. He didn't care. He wanted me to have a mastectomy and be safe, and didn't care what kind of reconstruction I had, or if I didn't have any at all.  I joked about maybe just putting a sock in my bra like my mother did. She had a mastectomy when she was seventy-five and couldn't be bothered with an implant and didn't like any of the mastectomy products. She just put one of her favorite white fuzzy socks in her bra and said,  "The hell with it!This is more comfortable." I think she was right. But we made plans for the whole process and jumped on in.

A Journey Through Cancer and Back

I haven't done a post yet about cancer, and since October is breast cancer awareness month, I think it's a good time to write one. My fight began in 2001, when I had a suspicious mammogram finding of microcalcifications. These are often present when there is cancer in the breast. They are not the same thing as calcium deposits, which are just that; lumps of calcium in the tissue. I needed to have a sterotactic biopsy done. In case you don't know, a stereotactic biopsy is step two for determining the presence of cancer in the breast. I started to describe this procedure for you, but decided it is probably better to spare you the gory details. The radiologist takes several tissue samples from the area where cancer is suspected and examines them under a microscope. She also implants a small clip so that when you have another mammo done, the area is immediatly noticed and easy to locate. This shows up on x-ray also, and makes it the most definite way to excise the right area if you need further biopsies. Depending on what they find, the next step is a surgical biopsy. I needed the next step. They suspected ADH----Atypical Ductal Hyperplasia, a pre-cancerous lesion.I had an excisional biopsy. The surgeon removes a small portion of tissue in the area where the stereotactic was performed. and sends the sample to the lab for determination of disease. This was supposed to be a teaspoon of tissue and turned into a partial mastectomy, as my surgeon thought it best to try to remove every bit of the area that had micro-calcifications. I wasn't too happy when I woke up and she told me the news; we had not even discussed the possibility of that prior to my surgery. I went home with instructions to take it easy and not lift anything for a few days, don't take motrin or aspirin, ice for pain and swelling,etc. Everything would be fine.She neglected to tell me to wear a tight sports bra for support. Everything seemed fine until the next morning when I woke up and rolled over in bed. I felt something let go inside my breast. Over the course of the next hour or so, my breast began to swell. And swell. I called the doctor and went in right away. When my husband and I arrived, we were told that my surgeon wasn't there, she was on vacation. She hadn't told me. I saw an associate who was very nice, examined me without touching me, and told me I probably had a small bleeder and should be fine; it would stop on its own. Come back in two hours if it continued to swell. I went home and waited, and went back in two hours; still growing. I was told again that the bleeding should stop on its own, come back in 2 hours. By this time my breast was enormous and the covering doctor had changed. He sent me to the hospital right away. I had to wait for the surgical repair as I had eaten ONE cookie in the afternoon; I should have listened to that inner voice and not eaten anything, in spite of what the first doctor had said. It's too risky to have surgery for at least six hours after eating solid food. As I waited in the hospital for my time to pass, two of our closest friends came to keep Paul and me company. They could not believe how large I had gotten. I like to joke about it now and say that I normally have oranges, but now I had an orange and half a watermelon. No exaggeration. Sometime after midnight, I had my second surgery. So much for a simple procedure and quick recovery.When she first saw me, one of the covering nurses made a remark about how it's sort of like when you are engorged from breastfeeding when your milk first comes in. I answered her that was true, but when you are breast feeding you haven't had a third of your breast removed the same day. She didn't have much to say after that. I know she meant well and to lighten my mood, but I was tired after so many hours of pain and no food or water. Dr. Simon was wonderful and kind when he finally came from the O.R. he had been in for the last few hours. He told me I had had enough of pain and would put me to sleep right away. No twilight sleep this time, full anesthesia. When I woke up he said that he couldn't find the bleeder as it had finally stopped, but he evacuated the hematoma and cleaned up the area and I should be feeling much better soon. I was taped up very tightly and told NOT to wear any bra and to see him in two days unless there was any problem. I went home the next day. My husband was kind and thoughtful and wonderful during all of this. He took excellent care of me through it all. You might wonder why I don't mention him very often when I write; it's because he told me he doesn't want me writing about him in my blog. So I keep it to a minimum out of respect for him. But he's the best nurse ever and I love him. :0)

When the biopsy results came back, it was what they expected; ADH; pre-cancerous. Come back for mammos every six months for the next two years, and yearly after that if all stayed clear. I hate that all of this happened, but I would still do exactly the same thing; go for my mammo, and then sonogram for cysts. I would still have the stereotactic biopsy, (and have had another one since then) and I would still go for the excisional biopsy(I have done this again too). The next time around I asked the new surgeon and the oncologist about my bleeding problem. They asked many questions and were surprised that no one had ever followed this for me before.(I will spare you the complete details of my history, but it began when I was 3 1/2 years old, had my tonsils out, hemorraghed, nearly died and had a transfusion of a full pint of blood. Adults have 8 pints, but little kids have maybe 4. rather significant) I always tell this history that doctors should have picked up on. Remember that you are your own best advocate and if you think there might be something they are missing, press them for answers. I have a platelet disorder called Von Willebrand's trait. Now I get medication prior to any surgery and have no problems.

I am an advocate for mammos every year. Early detection will save your life. Don't make excuses that you are too busy, mammos hurt, there's no history in your family, or anything else. Begin at forty if you live on Long Island; the breast cancer rate here is one in four. It is one in nine for the rest of the country. We still don't know why that is, but it is reason enough to get your baseline mammo early and every three years after that until you are fifty, when it should be yearly. I will tell the rest of my story in a day or two. Check back if you are interested.