Died Friday, May 8, 1999 ( See the attached post to the IBC list at the end of the story.)
I'm 43, and was misdiagnosed since October '96; a surgeon and biopsy finally determined I had IBC in January '97. I had no mets after the Bone and CAT Scans,and started Cytoxin and Adrianmician (CA) in Feb. I just completed 4 cycles, tho originally was scheduled for five. Only the 1st round made a dramatic difference on the inflammation and underarm pain. The 2nd and 3rd round, no better,no worse.
They have moved up the mastectomy surgery by 4 weeks, and I am going to the surgeon for details on that today. I am going to request a double msm for a few reasons..I am a 40-D (but the IBC breast is more like a 44-DD). I don't want the unbalanced feeling. A prosthesis does not sound enjoyable to me. I'm terrified of the IBC returning in the other breast, tho I've been told that a reoccur in the other breast won't kill me, only if the IBC hits an organ, am I in trouble. Don't know if the insurance will cover the removal of the good breast; that might affect my decision.
I lost my oldest sister (at age of 57), about one and a half years ago, to standard BC. She fought it for 4 yrs, but it spread to her brain and spine. I had the honor of caring for her in the last 4 months of her life, and learned alot that is helping me now. It was the best and worse time of my life being with her during that time. I still have two sisters and one brother. My IBC is especially hard for them, after what we went through with her. I was stunned when I was diagnosed.
My husband found this group within the 1st week of my diagnosis. I truly do not know what I would have done without this connection. Only people living through the initial shock could have possibly understood what I was going through. I found my footing and started focusing fighting the IBC after all the initial encouragement. Someone said (and I have repeated it often), it is like a "free-fall" after diagnosis. You can't believe it is happening to you, and your family, again. All the literature was so dismal for IBC, and now I learned to watch the publication dates on articles. There is so much progress on IBC just in the last 2 years, you have to keep looking for answers.
I have an adoring husband, Roger. I have known for 21 years (we worked together), but really have only had 10 years of 'being together'. We have always planned on growing old together, and taking care of each other for a long long time. My son, Jason, (26 yrs old) whom I was blessed early in life with (we grew up together!) and my near perfect Daughter-in law, Karin, have (2) awesome kids. My grandchildren are Tyler, 2 1/2 yrs and Cadence (Cady) 6 months. These 5 people are the focus of my life. But I am blessed with a large extended family. My mom is 82 yrs old, my siblings, and nieces and nephews, are offering constant help and support. I have big plans for the future. I now look at IBC as an awful detour of those plans, but I plan on beating it...doing whatever it takes. If there are no more set backs, I am scheduled for a Stem Cell Rescue, 2-3 wks after the mastectomies, followed by 5-6 wks of radiation. We are planning a very thankful Thanksgiving, which is when I should be done. We pray that will happen.
My love and support go out to all, at whatever stage you are facing. We are not alone, I know that now.