I’m sure some of you are purposely coming to the blog today to find out what the doctor ended up telling me.
If you’ve been following along on the blog you likely know that all this week, I’ve been prepping for test at the Mayo Clinic. It’s gone a little like this…(note the trip to Rochester is 2 hours there…2 hours back)
Monday-drive to Rochester blood test-get a shot
Tuesday-drive to Rochester get a shot
Wednesday-drive to Rochester get a shot-get a neck ultrasound-drink test dose of Radioactive Iodine.
Thursday-drive to Rochester (arrive at 7am)-blood work-full body scan-see doctor
All of this and the diet I was doing was in prep to have the full body scan done. This is suppose to find where my cancer is but in the past, it has shown nothing…so I haven’t been treated. This time around, I’m hoping to be treated.
I’ve taken a picture of myself everyday that I’ve gone…
Tuesday:Protocol at the clinic isn’t too bad. Everyday I go I get asked all the covid questions and then get a sticker that says the day on it. Then I can move freely through the clinic going from appointment to appointment.
This picture is dark.
It was early when I heard to Rochester this morning. 4:56am and I was on the road.
I was trying to have a good attitude about it all. I was trying to be hopeful that this time, something will actually happen and I don’t be sent home to “grow more cancer” for another 3 months which has been what happened in the past…so here’s what happened:
I had my blood draw. I went for the full body scan. That went fine. It was much longer than previous ones. I was in two different machines for double the amount of time. I’ve done PET, CT scans and full body scans enough now that they don’t freak me out. They are just part of my routine anymore.
After that it was time to go up and wait to see my doctor. Somehow, unknown to me, I’ve lost 27 pounds since I was seen in 2019. I thought I had lost some but didn’t know. I didn’t try. I just don’t cook like I used to. Between Kramer dying and the childcare kids not being here, I just don’t eat that much. That was the good news of the day.
The rest of the news. Lets just say it was frustrating to say the least.
I got called back to the doctor’s office. She was talking with me and was just going to tell me what the results of my scan were when her pager went off. She read the message, told me she had to go and excused herself. There was this image of me on the computer screen that she was just going to tell me about when the pager went off so that’s what I ended up having to do, look at that image, until she returned. Hmm. What did that image mean? By the time 15 minutes had passed I was sure my cancer was in my liver and back in my neck. I couldn’t figure out what that image meant…it for sure had to mean cancer.
The doctor finally came back. In all seriousness, it was at least 15 minutes. My doctor laughed, apologized and said she went into the wrong patient room. The other patient had been there longer than me. UGH. Not funny…and the appointment went downhill from there.
If you’re a long time blog reader, you know that this doctor isn’t my favorite. I had a long talk with myself before I saw her that I had to give her the benefit of the doubt. I had to be open minded. Well I quickly was reminded of why I don’t like her. ZERO bedside manner.
Long story short. They are not treating me. They found no cancer. She assured me it’s there, they just still can’t find it. She told me she will not blindly treat me.
In the process of telling me all of this she really ticked me. She kept talking about this “node” that was in my right lung. She kept telling me that we have to watch this “node” and it likely is the cause of the cancer. Then I asked her to go back and look at my original scan. There were nodes back then that she had thought were the cancer. Those nodes disappeared. I told her in the next scan a different node was found and that it too had disappeared. She didn’t listen. Then she berated me for not having the scans that I had not had from Lacrosse sent to Rochester for them to compare them. She had the report from Lacrosse but not the actual scan so they “couldn’t compare them”. That was so confusing to me. I was told there was nothing on the scans from Lacrosse and that’s what the report said too. This doctor read it to me. I asked her how can you compare nothing to nothing as that is what you would be doing if you compared two scans that both had nothing on them….right???
I ended up asking her if they took someone off the street and did a scan on them, would they likely have a “node” in their lungs? She said- oh yes, that’s very common. She went on to say they are mostly benign and that people have benign nodes all the time and that they can just disappear. (Wasn’t that the point I was making?) She didn’t understand that was my point. She continued to go on and on about this node of mine and it was the likely source. UGH.
By the time I was out of the office, I was in tears. She is a terrible doctor…Not because she didn’t treat me…because she doesn’t answer my questions. She told me not to be worried that my number is now 117 (yep is was 88 a month ago)…be worried that it’s going up. I told her yes…I understand that. BUT the number has gone up EVERY SINGLE TIME I’VE HAD THE TEST DONE. I said to her that she was obviously worried about that number or she wouldn’t have me coming back to the doctor every three months. I said if you weren’t worried, you’d have me come back every six months or every year. Obviously it’s concerning to her if she is wanting me back. She poo-pooed all of that. Talking to her was like trying to get an answer to a question that you ask a politician. She NEVER answered them. She just rounded around every question with no real answer.
After I started crying she stepped out of the room, came back and said she would offer me a consult with oncology. She said that would happen in 3 months when I came back for my next round of tests. I balked at that. I said I wanted to be seen sooner. She said well there was an opening on July 6th. I said I’d take it.
Apparently oncology can offer a dose of something that can help these undetected cancers show up when scans are done. Well yes I want to be referred to them. Who wants cancer growing in them?? Who wants their life to be drug out like this with continual scans. Not me. If there is anything that might help, of course I want to do that.
I was also berated for going back to my doctor in Lacrosse. I did that when Kramer was mid-cancer treatment and dying. I couldn’t be in both places at once. I told her that. She didn’t even say she was sorry I went through that. She just said that if I didn’t want all this confusion I should stay with Mayo Clinic. UGH.
So this is my plan. I am going to the oncology appointment on July 7th (I got a call and indeed the appointment got changed to the 7th). In the meantime, I am also going to ask to be transferred to a different endocrinologist. This whole cancer thing is a lot and having a doctor that I do not care for makes it all the worse. Feeling like she doesn’t listen and won’t actually answer my questions makes it all even harder. No one needs that.
I ended up hitting up John Hardy’s on the way home. It’s my favorite restaurant in town.
Although I don’t love the plan, I’m okay with what happened. We have a plan (although it’s just a plan to wait) and that’s always what is most comforting to me. Thank you so much to all of you who have sent prayers on my behalf, sent good vibes, sent me a gift card for gas, or just dropped me a note to say your were thinking of me. I so appreciate it. This all is really annoying but having a good team backing me means the world to me. THANKS.