Holy crap was yesterday a long day. I am still exhausted. The good news is that I slept until 7:00am! I haven’t done that for at least a couple weeks. I’m not quite sure how I can still feel this exhausted, but at least I got some sleep. So here is a recap:
I set my alarm for a very hopeful 7:00am yesterday, but I was up before 6:00. This turned out to be good however, as I actually had time to take a shower. It had been several days. I really needed to be hosed down. The soap dish pulled out from the wall of the shower (isn’t having an old house fun?) and I haven’t had time to go to Home Depot to get the supplies to fix it so I got to take my first shower downstairs. It felt like a little adventure. And since I woke up so early, I took my time which was nice. Showers are pretty much my only relaxation and alone time – I pretend I am at the spa.
I was off to the hospital at about 7:15. The up side is there is great parking available that early. I got checked in with no wait, they told me that I would be responsible for 30% of the cost and I told them to bill me. Might as well start getting the bills going, I’m sure it’s going to be a crap ton. She slapped a bracelet on me and I went to the radiology department. The first thing she asked is if I have metal in my eyes. What the hell? Is this a common thing to have? Is that really a question to lead with? After a small discussion, we decided I was safe to proceed and I got to sit down. A very nice man came to get me, got me changed and out of my jewelry and we got the show on the road. He started an IV for the contrast dye and brought me over to the machine. You may wonder how they do a breast MRI. Or maybe you don’t, but I’m going to tell you. The “bed” of the machine was all ready for me – I was to lay face down so it was well padded, had a wedge to lift up my body and then a contraption for my torso to lay on with holes cut out for the breasts to hang into, and a head rest. I was just hoping I wasn’t going to fill up those holes. I managed to get into the contraption, and he helped line me up and get me placed properly. I didn’t even fill it up which was a little party in my head. He played 80’s music through headphones for me and hooked up my IV to a pump on the end of the bed. The tubes were all coiled like an old school phone line so he hooked those over my thumb so I wouldn’t get pulled on anything. It gave the oddest sensation as I could feel the cold fluid coming through the tubes before it got to my arm. Then he backed me into the machine. One of the cables brushed across my back when I was pretty deep in and I went from 0 to freak out in no time. I jerked my head up and ripped off the headphones. He brought me back out. We talked. I think all the pressure from laying on my belly on this contraption combined with the headphones covering my ears and then feeling something scrape my back – that’s a lot. He offered to have me medicated and brought back on Monday but I didn’t want to do that. I calmed down and he eased me back in and pretty soon I was in place so we were good to go. I actually felt calmer when the machine was on and it kind of lulled me into relaxation. I would get a little twinge of freak out whenever he talked to me through the headphones and I remembered where I was. But, we got the job done. When he did inject the dye, which was pretty close to the end, I got a little metallic taste in my mouth but otherwise I felt nothing.
After this, I raced home, got the kids to our cousin’s house and picked up dad. Then back to the hospital – this time to building 10 which I hadn’t realized is the cancer building. The waiting room was full of old people. I thought my dad stuck out like a sore thumb, let alone me. We got checked in for the genetic councilor and sat down to wait. The patient liaison from the American Cancer Society came to talk to me. She brought me a big portfolio with lots of good information and explained everything to me. She said they have a wig center, hats and prosthetics which are all available for free. I had no idea. We talked for a few minutes and she left. And then I noticed all the people staring. It was an odd feeling. I’m sure they were thinking that I was just visiting even though I had on the hospital bracelet. I would think they should know cancer doesn’t discriminate. But they remembered their manners and stopped staring after a few minutes.
The genetic counseling was interesting. We really didn’t find out anything yet, but we took a thorough look at our family history and there is some breast cancer there. She gave me up to a 15% chance of carrying the gene. She told me that they believe there are two additional genes that haven’t been identified yet. If I come back negative, a group in Seattle will be following my case and using it to try and help identify one of the other genes. If I come back positive, my mom and sister will need to get tested ASAP. It also would set in stone my surgical option. I was shocked that the test wasn’t a blood test. She brought out a kit in a box, and I got a little bottle of Scope, a little cup and a vile to spit into. That was it. Rinse for 30 seconds, spit into the vile. Repeat. Then collect any saliva from my mouth and spit a couple more times. Done. Scope freaking burns. Results will be back in 1-2 weeks.
We had a little break (actually more than we expected because they pushed my next appointment by 30 minutes) so we walked to the cafeteria in the main building. We passed the doctor who gave me the news going into the OB’s office. I was very nice. I told her who I was and she had no idea. I told her I was the cancer patient she talked to last week and then she said she remembered me. Glad I made an impression. She thanked me for putting a face with the name. No problem champ. We went and got lunch. I had a tuna sandwich. Eric arrived for the oncology appointment and we walked back over to the building.
I called for my MRI results which were supposed to be in around noon. Turns out two spots “lit up” on the MRI – one in each breast. I expected as much from what they told me during the mammogram. She said it could be inflamed lymph nodes under the breasts but we need to check them out. So back for another ultrasound and if they look suspicious they will biopsy them immediately. They will set up the appointment for me and let me know.
The oncologist was all business, but in a good way. She took a complete history and did a thorough exam. She literally checked my toes. My right hip bone is tender so she ordered a PET scan to check my whole body for cancer. I will be really happy to have that one. She outlined treatment options, including a clinical trial. Just to save you the suspense, I signed up for the trial. A decision has been made. I have a feeling things are going to go REALLY fast now. The trial is only for triple negative, early breast cancer so I am exactly what they are looking for. It is not a blind study and there is no placebo group, I will know what is going into my body before it starts. I can opt out at any time, or the doctor can remove me from the study at any time if she doesn’t feel like it’s the best thing for me. The next steps are to get an EKG, install the port (small surgery), and the down side of the trial – I have to get another biopsy. They need fresh meat. The good side of the trial is that it revolves around the “standard of care” so group A is exactly what I would get if I did the surgery first and then went in for chemo. For 12 weeks I go in every week and get one drug, then I go in every other week for 8 weeks and get another two. Actually, if I got surgery first I would get all three together every 3 weeks which would be harder on me. Group B is the exact same, but there is an additional drug given for the first 12 weeks which is a chemo that has been used for bowel cancer patients for years. They are studying how it treats early breast cancer and it is especially good for triple negative. They are very impressed with the results so far. Group C is getting the standard of care plus an additional drug during the 8 week period. This isn’t a chemo drug, but a medication which blocks new blood vessels from forming. Tumors have to get a big blood supply so if you stop the blood vessels from reaching them, they choke out. Again, they are very impressed with the results. Group D will get all 5 medicines. All of the drugs are FDA approved and are not new drugs, just a new application. I should find out soon what group I will be in. They took blood from me yesterday and I’m scheduled to go in Monday morning for the ultrasound and biopsy. I am guessing the other tests will be next week and I could be starting chemo as quickly as the end of the week. Surgery will be 4-8 weeks after chemo stops and they can start reconstruction immediately.
I know there is a lot more, but I’m going to leave you with that for now. I’m so tired I’ve got no sense of humor so this is most likely really boring to read, but at least you know what is going on. I am looking for hat/scarf recommendations or patterns if you’ve got anything for me.
Here is the kit for genetic testing: