From January, 1997 until March, 1997, I had an ultrasound, xrays, ct scans, and a biopsy. The diagnosis was ductal carcinoma insitu. Rate of survival - 80%. Ok, I thought, I have cancer but it's not that bad. I'll just have them remove the breast, have my reconstruction and that's it. Surgery was set for April 19, 1997. On April 18, 1997, I developed a severe chest cold. Doctor cancelled the surgery. Due to scheduleing problems, I didn't have my next surgery scheduled until May 20, 1997.
Let's speed things up a bit...
May 20th, checked in for surgery. Plastic surgeon is there marking me up when he noticed that my breast was hot and red. My surgeon came in and explained to my husband (I was out of it at this point) that things have changed and he will know more once he gets me in the operating room. He came out about 20 minutes later explaining to him that I have inflammatory breast cancer and he cannot operate as yet...that we have to take a different direction. I woke up realizing something was terribly wrong because I still have my "old" breast.
May 23, 1997, I began the chemo train. I had 5 cycles of adriamycin/cytoxan which shrank my tumor 55%. Surgery was set again for October 1, 1997. Surgery was pretty much a breeze as I elected to have a bilateral mastectomy and had the handy button at my bedside for pain. My reasoning for the bilateral was out of sight, out of mind. We have to keep humor alive!
I had one month before I "moved in" to the hospital for my HDC/SCR. November 11, 1997 I moved into Johns Hopkins University in Baltimore for my High Dose Chemotherapy/Stem Cell Rescue. I had both my stem cells harvested as well as bone marrow retrieved and frozen. The most painful thing so far was the bone marrow biopsy and the bone marrow harvest. My protocol was cystplatin & thiotepa. I never had any sickness during my 21 day stay. I did get a mouth sore...one but, it was a biggie. My hair is gone again after having a nice little cap growing. Just in time for winter to set in.
One January 12, 1998, almost one year to the day of my first doctor visit, I had a follow-up appoint with my oncologist and my radiologist oncologist to start my radiation. Found 2 knots on my right chest wall. Will have to have them biopsied. Panic sets in again. Here we go...will it ever stop?!!
Biopsy came back positive for breast cancer. What?! Yes, it can happen. Even after HDC/SCR reoccurances do happen. I just didn't know that before. Anyway, I had them taken out and began my radiation treatments with weekly doses of Taxol. Received nasty burns from the radiation and also had a lung burn which kept me in bed for a week. The word here is radiation pnuminitis which happens to quite a few HDC patients. Finally, after 46 treatments, I'M DONE!
One week before my 33rd birthday, I'm finally finished with treatment. I can't believe it! Two weeks after my 33rd birthday, an area above my collar bone raised up. My oncologist is keeping an eye on it and finally here in June, decides to have it biopsied. It hasn't gotten any bigger so, I'm praying that it's nothing but, with IBC, you never know.
How have I gotten through all of this? Well, I have 3 beautiful children and a wonderful husband who are the center focus of my life. My faith in God has definitely gotten me through the tough times. He has certainly carried me a long way. I have to keep focused on my kids. If I'm not going to be here for them when they are older then I want them to have the best memories of me and am determined to make everyday count. As I was telling someone yesterday, IBC has become a part of my life, I will have to live with it for the rest of my life BUT, it doesn't have to be the center of my life. I still have to go to work, still have to cook dinner and wash the clothes. I still have to be here for my family. I've learned a lot from the other survivors and caregivers that are on the ibc list. I've learned that we will see some die but must focus on who are living, otherwise we will fall into a pit. Depression is a normal cycle that I'm learning to live with. It's not an everyday occurance but the thought of my kids growing up without me is. I can either focus on the good things or allow myself to focus on the bad. I'm choosing the good.
That's my story...so far.
You may contact me through the ibc list at firstname.lastname@example.org if you have any questions.
Thanks for listening.