I was finally home. spending time with my little one, no more hospital food (I think that was one of the things I hated, not having mom’s home cooking), sleeping in my own bed. While I was in the hospital, during those months, my step dad, step brother and Dave went and moved our room (Dave, Tiff and I) from the second floor to the first floor and my step brother moved up to my old room. Using a walker, having an oxygen tank, they weren’t real stair friendly to say the least.
The VNA (Visiting Nurses Association) were wonderful. I had a nurse that came out every day to deal with any injections that I needed and for the first couple of weeks she changed the dressing in my chest. They had assigned a Home Health Aide to Tiffany because she was a preemie. Turns out that her HHA was someone that I knew as a kid and hadn’t seen in probably 10 years. I was happy to have Becky watching my daughter and spending time with her. After I got home the VNA assigned me an HHA too, Nancy. She was the sweetest lady. She’d come to the house at around 8 in the morning and stay till 4. She’d make me lunch, help me bath (that was weird, having a stranger help me wash up in my own house, in the hospital, I was used to it but at home it was odd), helped me take care of Tiffany.
The VNA also sent out a physical therapist. Where I was having trouble getting around, and stairs were really hard on me (there was no choice getting into the house, I had to go up and down stairs) so they sent the rehab to me. The first woman that came out was horrible. She was mean to me. I had just been to hell and back and she was yelling at me that I wasn’t even trying. Hello are you in my body, do you know what it’s capable of? No, but I do. After a week of her coming and seeing that it wasn’t just a bad day, my HHA called and told them to send someone else. She stuck up for me when I just wasn’t able to do it myself.
The new physical therapist was great. She helped me exercise my leg muscles and build strength so that I wouldn’t need to use the walker anymore. It took months for me to be fully able to get around without help of someone. I think I stopped using the walker after 2 months but it was another 3 or 4 before I wasn’t afraid of stairs and falling down them.
October 12, 1993 is forever ingrained in my mind. This was the day that I had a gallium scan. For those that don’t know, gallium scans work differently from say a CAT scan. Before having one, I’d have to go 24 hours a head of time and get an injection of radiation. After I had the injection, I was no longer allowed to hold Tiffany for 2 days because there was a possibility of her getting radiation poisoning from me. I’d go back on the following day and spend about 90 minutes laying on a bed with my eyes closed with my arms above my head while this huge thing would rotate around me, very, very slowly. And when it came near my face, it was less than an inch away. I’m claustrophobic, so I kept my eyes closed so I wouldn’t freak out.
After my scan that day, the nuclear medicine doctor (I can’t remember the official title) had Dave and I come in for him to give us the results. It was gone, the tumor that had been encasing my heart and lungs was gone. Nothing left but scar tissue. He was amazed. Dr I was called in and he was amazed. Told me that I was a miracle, that it shouldn’t have been gone at all, that he didn’t know what happened or why but it was gone.
I was there at Dana Farber that day for the scan and for my last round of chemo. At that point, Dr I declared me in remission and had me go through the chemo just for the hell of it. He still didn’t believe his eyes. But I was cured. That’s all could think of. I couldn’t wait to get home and tell mom, dad, everyone. This was in the days before I had a cell phone and instant ability to communicate with everyone.
After that my appointments at Dana Farber started to stretch out, first to every other month, then to every 3 months, every 6 months, to once a year, to finally none at all. But I still remember that day like it was yesterday. The only cloud on that day, I couldn’t pick up and hold Tiff and hug her. I had to wait another 24 hours before I could hold her.
So not only did I have a miracle baby, who saved her mom, but now I was a medical miracle. Someone, somewhere along the way told me that Dr I published my case in the New England Journal of Medicine. A few years after going into remission, I went to see Dr I for a follow up visit and sat there with sad eyes and my first thoughts were “Oh crap, it’s back.” No, he had sad eyes because his bosses were forcing him to chose between treating patients and doing research. He was sad because it was out last appointment. At this point, he was a member of the family practically, he saved me. His research saved me, I couldn’t fault him for staying with his research, especially if there was a chance that he could save someone else’s life.
I still miss him and wonder if he’s still at Dana Farber or if he’s gone back home. But I will forever be grateful to him for the life that I have been able to live.