Tough News

This is by far the biggest blow since my initial diagnosis 18 months ago. Last Thursday, I went to Shands for a scan and a follow-up visit with my surgeon. A friend offered to come with me. It was kind of a big deal to let someone other than my husband enter my other life, the patient world. I still feel that I don’t belong there and I always hate to have others see that vulnerable side of mine and see everything I have to go through. I wasn’t worried about her coming to my scan or the follow-up visit with the surgeon but there was a chance I could get some results from the scan, and what if the results weren’t good, I knew I would be pretty upset. When I was done with the scan and done seeing the surgeon, we showed up at the radiology department and the nurse practitioner took us right in. I didn’t have an appointment but she knows me quite well by now. I make sure the key people remember me! I have been communicating with her quite a bit and the day before the scan I had called her asking her if there was any chance I could get the results. She said to stop by and that she would try to get some results. She went to look for the doctor and came back 15 minutes later indicating that he was in a meeting and that it would be best if she gave me a call later. We left the hospital, went for lunch and as we were stocking up on Trader Joe’s goodies, I got a call from her. All she could tell me was that the hepatic artery had not reopened. I tried to ask her about the response from the radiation beads and she said she didn’t have those results yet that “they were still measuring the spots” – I thought crap, it means for sure it wasn’t a complete response. She promised to get back with me with more results when she would have them… I was bummed but trying to wait for the full report but couldn’t help thinking was all this for nothing? all the complications, the gallbladder pain and surgery, are we really back to square one? I kept my phone in my hands for the rest of the day but didn’t receive any calls. It was not until 2:40pm of the next day that I got a call from Shands. The timing couldn’t have been worse. The school bell had just rung and my son was coming out of his classroom. I quickly asked a friend to watch him for a few minutes and found a little corner to pick up the call. These doctors can be so hard to reach, I really didn’t want to miss my chance. It wasn’t the doctor, it was the nurse practitioner. She asked me if this was a good time to talk, I explained that I was picking up my son from school and she said “well call me back when you get home”. I somehow knew right then and there, in her intonation that the news were not good. Naively I thought the radiation beads didn’t work. As I was not going home from there, I insisted that she gives me the results. She apologized for giving me these results by phone but and explained that 1) the Y90 had not done much, 2) there were new growths on the liver and 3) here’s the best part – the cancer has spread to my lungs… I have no idea how I remained so calm and held it together. She assured me that one of my doctor’s would be calling me back, one was out of the office and she had left a message on the other’s personal cell phone. I was actually heading to the park with Sebas and looking forward to hang out with a friend. I was not going to cancel, I was just going to go and pretend for the time being that everything was fine. When I got to the park, I called my husband. When I heard myself say “it’s in my lungs” I bursted into tears and of course Sebas was running back to the car to ask me something. I put on my sunglasses and boxed it up. Fred asked if I wanted him to come home, I could hear the devastation in his voice. Since he needed to pick up Pierro later, I told him I would be fine. I was in shock and complete disbelief. I was numb. Of course my friend asked how my Thursday appointments had gone and I told her I was still waiting to hear (I did apologize later for lying and not telling her but explained that there was no way I could have, I would have been a complete mess – she was thankful that I had not told her then because it would have been hard to handle with the kids and all). So still holding on tight to my phone, waiting to hear from a doctor I went home and ended up not hearing from anyone. Fred and I decided to tell the boys, we have always been honest with them and feel that it’s the best for us. We all cried together and had a very quiet dinner. I had a horrible night that night, just like when I was first diagnosed. I would cry myself to sleep then wake up in a panic thinking “shit it’s in my lungs” and cry myself back to sleep. Fred would hold me tight in his arms as we shared our sadness, helplessness, and fears. On Sunday morning, as we were in Orlando for my son’s baseball tournament, I got a call from my amazing GI oncologist at Shands (yes on Sunday morning!). I can’t say enough good about this doctor. First, he explained how the radiation beads had worked pretty well on the side of the liver that was treated except for 2 spots that didn’t respond. I told him I was confused as I had been told the opposite. He explained that radiologists look at spots and measure them whereas he and the interventional radiologist were able to look at the scans differently and saw that the spots were actually “holes”. To his knowledge there was no new spots on the liver but the ones on the untreated side had grown (which wasn’t too surprising, I had been off chemo for 3 months). Of course the most disappointing finding was the spots in the lungs. He didn’t know how many but there are a few and on both lungs and he reiterated how small they were. I asked if they were close together or spread out  and he said the latter which makes resecting them not an option. I asked about the laser therapy in Germany and he said maybe down the road but not now. I asked if the fact that many spots showed up means that the cancer is aggressive and he responded “not necessarily”. We have learned from the spots on my liver that this how this cancer spreads by growing many tiny spots as opposed to growing just a big one here or there. So the plan is to get back on chemo and treat this systemically. He remained very hopeful about new immunotherapy trials coming down the pipe soon. He will keep his eyes open for me. I will be meeting with my local oncologist tomorrow, I have a feeling chemo will start next Monday. I am slowly picking myself back up and getting ready to once again roll up my sleeves and continue killing the cancer cells. Many people have asked me what I needed. Sadly what I need doesn’t exist yet… I’ll get back to you on this one, but one thing for sure, is that I don’t need the “pity looks” or the looks like I am on my death bed. I feel far from there and still determined to beat this thing. One step at a time, one day at the time… I am not ready to talk yet but try to respond to all my texts and emails… I’ll post an update when I know more… Please continue to keep our family in your thoughts and prayers… thank you…


9 thoughts on “Tough News

  1. I am sorry to hear of another challenge, but thankful to hear your strength. You and your medical team will clearly get a hold of this to move forward. Always praying for you and your family!

  2. Tough news…thank you for sharing this information with us and we continue to know that with the bad….comes the good! Looking forward to the “Ups”….and moving far away from the “Downs” of this journey. Sending love from CA and we will be there to see you soon. Once we are all well, and you are feeling good….we will be there. As I have spent many of hours in the doctors offices this week….I can’t even begin to imagine the time and energy you spend to get well. Fight the fight…Rachel….FIGHT!

  3. When I was diagnosed with Stage IV colon cancer, it has spread to my liver, my ovaries, and my lungs. The first doc told me I had 6 months to live. I fired her. I just celebrated 4 years this week! The cancer is now gone from my liver, my ovaries were removed, but I still have very small tumors in my lungs. Recently the doc said to me, if we can keep the tumors from growing in the lungs and there are no symptoms, we may be able to think of it as a chronic disease rather than a terminal disease. Best of luck to you! Keep the faith!

  4. Thank you for sharing your news with us and I am sorry to hear about your new hurtle. Your positive attitude and strength is amazing! I keep you in my thoughts and prayers daily. I wrote a prayer for you and gave it to my friend who left Tuesday for Jerusalem. She is going to lay the prayer on the Western Wall for you. Mucho love to you!

  5. Thank you for sharing your news with us and I am sorry to hear about your new hurtle. Your positive attitude and strength is amazing! I keep you in my thoughts and prayers daily. I wrote a prayer for you and gave it to my friend who left Tuesday for Jerusalem. She is going to lay the prayer on the Western Wall for you. Mucho love to you!

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