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I had my routine mammogram in December of 2010. I got a call I think the first or second week of January that they wanted me to come in for a repeat. While I was there they said they saw something suspicious and they made an appointment with the surgeon so I could have a biopsy. When the report came back it was ductal carcinoma and while there was some encapsulated area, there was also some that wasn't.
Surgery was scheduled for late February. I had opted for the lumpectomy on both the surgeon and oncologist recommendation. In my case, chemo and radiation were needed because I had an aggressive form of the disease. I was considered stage 3 because there were 14 lymph nodes involved.
So after I healed from the surgery it was time to start chemo. Since the chemo was going to be pretty strong my oncologist suggested I get a port put in. My first chemo was on St Patrick's Day 2011. And so the problems of my Murphy's Law saga begin. The nurse wasn't used to the kind of port I have and also said I had swelling still because the port was new and she couldn't access it. They had already started an IV for the pre-chemo drugs they gave me. So when it came time to get the chemo drug that is the most caustic, not only did she inject right into a vein, but into a small vein. My doctor was very upset and told her to make sure to flush it well.
My chemo day was Thursday, and I wasn't out of there that week until about 4:30. I felt fine and we went out to eat corned beef and cabbage after. I was supposed to go back in the next day to get a shot. The shot helps to keep your white count up and make you less prone to infections because your immune system is basically shot during chemo. So I went in for the shot Friday at 10:30 am. I still felt fine and went shopping with my friend and out to lunch. Well I am not sure of the cause of it and guess it doesn't matter, but did later find out that he shot should be given anywhere from 24 to 36 hours after chemo. So according to my oncologist I may have gotten the shot too soon, and instead of helping me it could have made matters worse. Or it could have been I was just run down, but later that evening I started to feel flushed and didn't feel good. I ignored it because my dog got sick that night and we had to take him into the vet. But after we got home I started feeling worse and took my temperature and realized I had a fever.
Sunday the temperature was 102 and we went to the ER. They said I had bronchitis and that it was going around. They would have sent me home, but since I was on chemo they decided to keep me. I ended up in the hospital for 9 days. I was getting sicker all the time and my hair was starting to fall out. My husband had gotten sick too and was not coming to the hospital that much because he didn't want to make me sicker. Finally when he did come and saw how sick I was we talked to the doctor. I was crying and told him I was going home because I was losing hair and was not going to do that in the hospital. By this time I now had double pneumonia and my white blood cell counts were barely above 0. i had to go home on oxygen and had to see a pulmonary specialist. Chemo was put on hold until I got well.
Also about this time I ran into a problem with food not tasting good. My husband was trying everything to get me to eat. We finally saw a nutritionist who helped with that and told me to eat small amounts even when it didn't taste good. So I finally got back to chemo about mid April. They cut the dose down some thinking that the first chemo could have been too strong for me. That chemo went fine. This visit I even got them to be able to figure out how to access the port.
The following visit was probably the worst actual chemo session. They went to access the port and it had flipped totally around. A nurse tried to flip it back, but it hurt like heck and she couldn't flip it. The oncologist said he could flip it. Hurt even worse and it wasn't going to move. Hubby finally made them stop because he could see I was in agony. Went to the surgeon's office a day later and saw a different doctor who flipped it over and I didn't even feel it. But he said it probably wouldn't stay flipped. So I made an appointment to see my surgeon right before the next chemo. He flipped it and put the needle and IV tube in at his office and taped it down for that chemo and had me come to the hospital early in the morning before the next chemo where he had to take me to the OR and re-stitch it in place.
The last 6 chemo sessions went fine as far as getting the chemo. Port worked fine and staff got used to it. But because of being in the study I was in, I got picked for the strong chemo and this one gave me bad pain all over. From Saturday afternoon until about Monday morning I was useless. Radiation was from early September until Oct. 20, 2011.
The biggest part of my story is that mammograms are super important for women who are at an age to have them. And that even when things go wrong you still need to plug along and fight and not give up. And that a good attitude is super important. And to be your own advocate.
I finished my treatment almost 4 years ago and am no evidence of disease. The advice I got was this: "it's hard and it's scary, but do what you have to do. Read up on things from appropriate sources, ask questions, pray if you are so inclined, talk to people and come to the best decision you can about what you want to do. But whatever happens, NEVER look back and don't question what you did or didn't do." That advice will save you a lot of grief.
Thank you, P.T., for sharing your story! I'm happy to say I haven't had any of these issues. As for my update...
I'm getting a little better each day. My energy is returning, and I can do a little more without my heart going into overdrive. Last night, putting on sunscreen to go out practically did me in, but even going up the stairs isn't too bad now if I don't go too fast. I sat at my computer for much of today and got a lot of work done, even with distracting myself with social media, and that's great. Then we had a visitor and went out to dinner, and by the time we were done, I was DONE. Yet, still ok to get on here and finish up this post.
I had no mouth sores this time, and in fact only had the sort of pulling sensation that indicates they're imminent on one day instead of the normal 3-4. I had a mild rash develop on the back of my hands today. I put lotion with aloe vera on it and it subsided a little. The stubble on my head is getting thinner/patchier, and my eyebrows seem lighter but they still look like normal eyebrows. I think my eyelashes are still intact, too. Definitely better than this point of the last cycle, so I'm hopeful that the next one will actually go a little better.