Update: Donna is alive and well, and celebrated six years survival since diagnosis in January 2002.
In November of 95, I felt some thickening of the left breast, behind the areola. It didn't seem right and I knew that I had to get to the doctor but with the holidays coming up and 3 young sons to deal with (ages 4, 8 and 10), I just didn't have time to get there until January. There was no redness of the skin and no lump, however, the nipple was slightly inverted along with the increased mass. After the exam, the doctor said that there should be nothing wrong but that I should have it checked out. (I think that because of my age, I was 35 at the time, he thought that I was in no danger.)
To get the mammogram done, I had to see my Primary Care Physician, who was wonderful and who after seeing me, put a "STAT" on everything that I had to have done. I had a mammogram and the next day, received the phone call to tell me the mammogram revealed calcifications that indicated breast cancer. Numb from the fear that I might have breast cancer, I went to the surgeon, telling only my husband and my sister of the suspected cancer.
In the following days, I lied to my mom, my family, my friends. No one knew what was going on that terrible month of January. My most dreaded task now was to tell my mother and father. How could this happen again to them? They had lost a son, Enzo, 25 years ago to melanoma. I had seen the pain in them and I did not want them to go through it again.
The surgeon showed me the mammogram film, pointing out to me the scattered calcium deposits and he told me that it would be impossible to take out a small area so a mastectomy would be performed if the biopsy proved positive for cancer. It was positive. Surgery was scheduled for the following week. I of course had to tell my mom and dad the painful news; the kids were told also, but we asked everyone not to tell the "whole world" yet. (We live in a small town where everyone knows everyone.) On January 29, the mastectomy for intraductal carcinoma was done (this form was "highly curable," the surgeon had said that first visit in his office). After the surgery was performed, the surgeons went out to the waiting room and explained to my husband and sister that when the cut was made, the skin did not look right. It had a watery appearance that made the surgeon suspect that something else was going on. He had it biopsied and inflammatory breast cancer was diagnosed.
The night that the oncologist came to my hospital room, I cried and cried and thought that I would never be able to stop. I went home from the hospital, devastated. The rest of my world had to know all about this now, I couldn't keep it secret anymore. My wonderful friends told me things like, "why didn't you tell us sooner, we could have been praying for you." Somehow in the weeks that followed, I found the courage to handle the shock of being diagnosed with inflammatory. Maybe I started out acting brave in an effort to convince myself that I was. Later, though, I was touched by something that made me think of the inspiration that I could be for others. I just had to have faith and believe that everything would be okay. I acquired the most positive attitude and I proceeded to "do what I have to do" to battle this disease. I was so lucky to have wonderful doctors from the very beginning of this nightmare. I had complete faith in my oncologist; he recommended not only 3 regular cycles of chemotherapy given for normal breast cancer but also high dose chemotherapy and bone marrow transplant due to the aggressive nature of inflammatory.
I had 3 cycles, 3 weeks apart of adriamycin and cytoxan in my doctor's office. I was so lucky to have so few side effects from the chemo. After the first cycle, I remember feeling like I had had one too many margaritas the night before. I also felt very chilly that next day. The nurses called to check on me and I must have sounded like a drunk when I told them that my only problem was slurred speech. For that, I was told just to take half of an anti-nausea pill, Reglan (I was told that if this didn't help, I could fill a prescription for Zofran, but I never needed to.) After the 2nd chemo, my hair started to fall out. I was stubborn about it so I kept my hair long for as long as I could. I was cleaning up hair off the bathroom floor every morning. It was early spring and I remember feeling cold at night because of my thinning hair and I had an appreciation for balding men. After my 3rd chemo, I had to avoid crowds for a while due to low white counts but I was lucky because that didn't last long and the white counts started to go up without needing to boost them with wheat grass or such. I did need hospitalization for a few days when I had a fever of 100.5 along with low white counts.
A short stay at Northwestern followed. I was given doses of chemotherapy that were stronger than those previously given at the doctor's office. These were to mobilize the blood cells to start producing more stem cells. A couple weeks after that stay, I would go and have a port put in for harvesting the stem cells. These would then be frozen for future use. The process for harvesting the stem cells was very easy. In my program, the protocol that I was to follow for the study that I was in, I had to go for 6 drawings. I was hooked to a machine for about an hour. Blood came out of one tube and then returned to my body, being spun first to draw out the cells. These cells would be given back to me in a few weeks after high dose chemotherapy, which my family called industrial strength.
Before the bone marrow transplant which would involve a 3 week stay at Northwestern, I had to make arrangements for the boys who would be out from school for summer vacation. I worked things out, and in the long run, the kids ended up having a great time because they were constantly being entertained.
I found I was explaining the whole bone marrow process many times, even repeating it to certain individuals, something that was necessary because the whole thing was very complicated. Even health care workers needed the information--one nurse while taking my blood for a CBC said, "you had a bone marrow transplant for BREAST CANCER?"
The stay at Northwestern and the whole process was not as bad as I had anticipated. I had told people that after the very high doses of chemotherapy, when I was "at the point of death," my previously collected cells would be given back to me. I requested that candles be lit in church for me. However, it wasn't that bad. First, I had 4 days straight of chemo. (Thiopeta, carboplatin and high dose cytoxan were given.) All I did the next 2 days was sleep; I kept falling off, thinking "what's wrong with me?" Well, duh, I had just had poison pumped into me for a few days! The day the healthy stem cells are given back, is called "day one." Nurses and doctors watch the blood counts fall to the point where one must wear a mask when exiting the hospital room and certain foods are not allowed (fresh fruits and vegetables can carry pesticide residuals). A team of doctors comes in daily to check on the patient. I had fever at night so blood had to be drawn and some scans performed to check for possible infections. I was lucky not to feel TOO bad, just a little nausea and diarrhea. (My worse side effect was the rare puncturing of my lung when a catheter for blood draws was put in. A few days after my reinfusion of blood cells, I started to have terrible pain behind my rib cage. It was termed a pneumal thorax and it was horrible; I had a tube inserted through my back to the lung to drain the water and air from around it and a pumping machine hooked on for nearly a week. Lucky me to have this unusual complication--I wouldn't wish it on anyone.)
I continued to eat during my stay there even when nothing that I tasted had any flavor. The nurse told me to do that, to keep my digestive tract going. She also recommended that I take walks as often as I could so I did, my IV stand in tow. I read, watched TV and wrote letters. I never felt antsy to get out of the hospital until the last few days when my counts started climbing. Go white cells, go platelets. The doctors were pleased and impressed and I started iching to leave. 14 days after the reinfusion of healthy stem cells, I was ready to go home. The whole thing took 19 days (3 less than anticipated).
It was over. We fought this thing with one of the biggest, most aggressive treatments. Maybe that's why I had such a positive attitude, I had the comfort of knowing that we did all that we could do. My mom gave me a beautiful emerald necklace when I came home from the hospital. The nurses at a follow up visit admired it and I told them how it was a gift to celebrate the completion of the bone marrow procedure. The nurses said that that was so sweet of my mom but that there had to be an EASIER way to get one!
Now is the waiting and hoping stage. I look forward to the bone scans, blood tests and mammograms so that I may be reassured that everything is OK. My birthdays are met with alleluias instead of angst over turning another year older. I'm as busy as ever with the 3 boys but I find that I stop more often just to look at them and smile and marvel at how wonderful they are. I've shared a special closeness with my husband, my sister and many wonderful friends. And most amazing, I figured out why there is suffering in this world (now isn't that an amazing feat?). First, I think God wants to hear from us once in a while--we're so busy all the time and don't take the time to pray. It's things like this that make us storm the heavens with prayer. Also, this is what brings out the best in people; friends helping friends is therapeutic for all of us. We realize how much we need and how much we are able to give.
I send up a prayer to the heavens that all those touched by this terrible disease are surrounded by some sources of strength. May wonderful family and friends emerge and come forth with love and strength. May you find courage (and yet don't try to be a pillar of strength ALL the time). Accept the offers of help and when people say that they are praying for you, respond as I did "I'll take the prayers . . . keep the prayers coming--they're working!"