PET

On the Road Again

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Today I’m making my favorite trip again. *eyeroll*  I’m headed down to Sloan-Kettering for another fast and dirty trip for a PET/CT.

The last time I updated regarding my health, I was going to see a GI Oncologist at Sloan on September 28th to see if she could unravel the mystery that is me. I had only planned on being there over night so I booked the train for Tuesday, September 27th and invited my Mom to come along! In past 3 yrs she had never come with me to NYC so I thought this would be a good time for some girl time. Oh, life….it has such a way of throwing irony at you at the worst times.

Our trip to Manhattan was pretty typical. We were delayed. I can’t even get mad any more but I do get a chuckle when I hear the people around me freaking out about it. We ended up being about 3 hrs late getting in and we were pretty tired so, my grand plans of doing some sightseeing were squashed.

The day of my appointment with the GI Doc, we got there early – 9am. I always get to appointments early in the hopes that I can get in early. Nope. We waited almost 2 hrs before I was called back. It was another 90 minutes before I actually saw my Doc. I saw her nurse who took my vitals and I saw her Assistant who did a very intense intake. Then I waited some more. I was getting nervous because we had a train to catch at 3:40pm.

At almost 1pm, Dr. Ludwig walked in. I loved her almost immediately. She listened. She heard me. She validated me. She promised me she would get to the bottom of what was going on. And then she freaked me out with what she said next: “You need to change your plans because you’re not leaving today. I need to get you into imaging right away. Sit tight I’m going to make some calls right now and get some scans scheduled.”  *Gulp*

Then things seemed to go pretty fast. I had to make 2 calls immediately – one to the hotel and the other to Amtrak. Then a nurse came out – “Dr. Ludwig wants you to do a Colonoscopy and Endoscopy on Friday the 30th” Yeah, no. I had to give a speech at Adam’s school that day. I would have to come back. So, we scheduled that for the following Monday, October 3rd. (Sheesh!)

At 2pm I finally had my appointment time for an abdominal x-ray and a Lumbar/Thoracic Spine MRI. Two different locations. 5pm and 7pm. We could finally leave, go get lunch and relax before we had to go back out make our way to my appointments.

The Imaging office for the MRI was at an affiliate location connected with Sloan and in a very upscale part of Manhattan. While I was filling out the paperwork. My Mom started poking my arm and whispered loudly – “LOOK!”  I looked up and standing at the counter checking in was – and I’m not even kidding – Martha (freaking) Stewart. In all the times I have been to NYC this was the first time I had ever seen a celebrity let alone sat within 2 feet of one. My Mom was literally seconds away from talking to her when someone came out and whisked her away for her x-ray. And just like that she was gone.

While I was waiting for the MRI, I received a call from Dr. Ludwig’s office. The abdominal x-ray I had an hour earlier was OK and I was officially scheduled for the Colonoscopy/Endoscopy for the following Monday. (Joy!)

To make a long story….well, it’s too late to make it short so I’ll just jump to the why I’m going to Sloan today. So, the MRI was negative for any spinal compression or metastasis that would cause my spontaneous GI episodes. The Abdominal x-ray was negative for any obstructions. The Colonoscopy/Endoscopy was OK. The biopsies that were done – there were 4, including a gastric polyp, were negative. She also tested me for C.Diff, H.Pylori, and Colitis. It was noted that my stomach is very inflamed and angry. All of this is GREAT NEWS. The best news. One tiny little problem….I’m still losing weight, I’m still not able to eat all the time, I’m still battling nausea and I’m having GI issues and I just don’t feel good.

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There was a question as to when I would have my next set of scans. Stick to the 3 month plan or wait until February which would be 6 months. I was almost inclined to wait, however when Dr Modi, my Oncologist at Sloan heard that I’m not better and I’m down another 6lbs her office called me and said she wanted me to have the PET now.

I usually have the results the same day – one of the awesome things I love about Sloan – but my scan is late (3:45pm) and it’s a Friday so I’m not anticipating hearing anything until Monday.

*Fingers Crossed* Hoping to keep my ‘unremarkable’ PET scan streak going a little bit longer.

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The Numbers Game

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This past Valentine’s Day I spent the entire day at Memorial Sloan Kettering in NYC (my home away from home) and had a battery of tests, scans and doctor appointments. It was my 6 month cancerversary and it was time to see if the hormone therapy I was on was working. My Doctor was pretty sure it was since my labs were looking good and the tumor marker numbers had been consistently been going down. To say it was a high stress day was putting it mildly. I wouldn’t know the results of all the tests and scans until the end of the day and I wanted to know now.

First I had a Mammogram and ultrasound to see if the tumors in my breasts had changed. I was not impressed with my tech. She had zero bedside manner. I understand she sees a lot of women but is it too much to ask that she at least be NICE?? My PET/CT scan was next. I couldn’t help but have flash backs to my first PET. Knowing you have cancer but unsure what kind of where it was coming from was the worst. Those feelings of terror and helplessness came flooding back. I tried to stay positive and concentrate on the fact that my numbers were good. This had to be a good sign.

After the PET/CT we had a break and my husband and I had lunch at the restaurant on the corner. We kept our conversation light and positive knowing that in a few hours we would be meeting with my Oncologist.

Blood work was next and then we were in the room waiting for Dr. Modi. When she finally came in I wanted to jump out of my skin. Part of me didn’t want to know but she had the paperwork in her hand and she began telling us although the final report wasn’t back she had a partial read:  No Evidence of Disease. I immediately broke down in tears. I couldn’t believe the meds worked. My doctor was very pleased and we talked about how the hormone therapy would be what I would stay on for now. My husband was so happy. He told me he wasn’t surprised I had good news but I could see the relief in his face.

After my emotions calmed down the questions began: How long will this medicine work? What happens when it stops working? Will chemo be next? As happy as I was I still felt as though I had a cloud over my head. After all, at some point the cancer will figure out how to get around the meds and will start invading my bones again or worse. It’s like telling someone getting a cast off their leg that they can run and jump again but sooner or later their leg will break again. It’s a strange limbo to be in. My Oncologist explained that they would monitor me by the blood work. If at any point the blood work changed they would move on to scans. So now, it’s all about the numbers.

In April, I began experiencing severe pain in my ribs and chest. I spent 5 days in the Wilmont Cancer Center where they ran test after test to figure out where the pain was coming from. I was on massive doses of dilauded that I pumped every 30 minutes. Their first thought was that I had new metastases but all the tests were normal. I was referred to Palliative care for pain management.

I have my blood drawn every month where I live so my doctors can monitor my numbers and also when I’m in NYC. In May one of the tests came back higher than the previous months. It threw me for a loop. Did my meds stop working already?  Was the cancer coming back? Although I wasn’t out of range yet I was a the tippy top of it. Any higher and I’m outside the normal range.  I’d have to wait another month to know for sure. When I told my Oncologist about the blood work at my next appointment she had me schedule a PET scan for July. Great.

Much to my dismay the pain I had in April returned and it hasn’t gone away. I’m on a different pain med but no matter what I take it’s still there. Monday I go for my monthly blood work. I’m very anxious about it because I’m sure of what the results will show. It’s a gut feeling I wish wasn’t there. Along with the constant pain that fluctuates between manageable and wanting to hurt someone most of the side effects of the hormone drug I’m on are gone. This is another reason I’m sure there is a problem. At least when I had the side effects I knew the meds were working. Now I’m not so sure anymore.

My hope right now is that the numbers aren’t as high as I fear they will be. And when I get back from our family vacation I’ll have the PET scan and find what I’m facing. Until then I’m going to do my best to stay positive, enjoy our upcoming vacation and make as many memories as I can with my family.