Remission
That’s right - 5 short months after starting chemo and I’m officially in remission. It worked! My doctor is a genius. His crazy plan of trying to kill me with more chemo than I thought was possible for one person to get has worked. “No active cancer” was the technical description of my PET scan images, but this morning I made him say the word remission. I didn’t believe it until I heard him say it. Remission!
I’m sure most of you saw my Instagram and Facebook posts earlier this week with the news, and while I wanted to celebrate, I still felt like it was premature to do so. With all the medical jargon it’s hard to understand exactly what “no active cancer” means. I first got a call on Monday from the nurse in my oncologist’s office so I thought for sure this is him calling to give me the results of my scan. Nope. She was calling to give me the details for me getting admitted to the hospital for my 1st of 3 rounds of methotrexate chemo on Thursday (Today). I stopped her and said, “but this is all dependent on a clear scan right? Aren’t we still waiting for the PET scan results before moving forward?”. She put me on hold to ask my oncologist and came back on the line and told me he said my scan looks “better” so they’re proceeding with the in-patent rounds and that he would discuss the details with me on Thursday when I come in to be admitted. Better? What does better mean? Better doesn’t mean gone. I let her know that I would like to talk to the doctor before coming in on Thursday so she scheduled a call for Tuesday morning.
My mom came over on Tuesday to be with me for the call - she’s a great second set of ears and always has good input and asks good questions. My oncologist even told me today that she was a good choice to be in on the call and be present at my initial appointment. So he went over all of the details of the scan over the phone. He said the size is now down to 2.2 cm (from 3.5 cm at the scan in September and over 8 cm at time of diagnosis) but even better is that he doesn’t see any of the tumor lighting up with cancer the way it had on the previous scans. That means the mass that’s remaining is all dead. There is a slight redness on the perimeter of the tumor, but he doesn’t think that’s an indication of cancerous cells. He says it’s just residual tissue still in the process of dying off from the chemo. He said it could take years for the full mass to disappear and there’s a chance it may be there forever because my tumor was so big. I don’t do anything small, apparently.
Today I came in to see the images with my own eyes before being admitted to the hospital for a week for more (but different) chemo. I wanted to get a read for what my oncologist thought. Is this what he expected, what he wanted, or is he disappointed at the scan results. He said that he’s had to give a lot of bad news this week - and my results are not a part of that. He said this is as good as we could have hoped considering just how bad my cancer is/was. He explained that with high grade lymphoma, there was a chance it may not respond at all to chemo and the fact that mine has in just a few months that this is great news. It’s hard to know when to get excited - here I guess. He showed me the video of my scan by first starting with the images from the initial scan in July for reference and it certainly does look a lot less scary than the first scan - but in my amateur oncology expertise, it doesn’t look a lot different than the scan from September. I’ll get another PET scan in 3 months and hopefully we’ll see more of the dead tumor gone. My concern in the small part of the tumor that still slightly lighting up - isn’t that cancer? Shouldn’t we still be trying to kill that part too? I asked if it would be worth it to get more REPOCH (red devils) to try to finish off the rest of it. I’d be up for more rounds, annoying pump beeping at me and all, if it means we can say I’m cancer free with no fear of a few remaining cancer cells reproducing again. He told me that if there are a few remaining cancer cells that survived over 600 hours of REPOCH, then another round or two won’t make a difference. If that didn’t kill them, then we would need to change the chemo to get rid of them. Since he doesn’t think there are any remaining active cancer cells, he said there’s no reason to think of alternative treatments at this time - we just need to keep an eye on the scans. I’ll get scanned every 3 months for the 1st year. And of course, because my doctor knows I like to go down the dark scary rabbit hole of " what if” scenarios, we then discussed the chance of recurrence. I know lymphoma in general has a high likeliness of coming back, but naturally since again my tumor was so big and grew so fast, the statistics are slightly worse. He said there is a 50% chance it will come back within the first 5 years. He’s hoping I’ll make it to 10 years. But there’s a chance it may never come back (but he wouldn’t give me a percentage for that). I asked what happens if it returns - would it be more REPOCH and he said no, I probably wouldn’t ever get that exact cocktail of chemo again. If my cancer comes back, we’d go straight to stem cell transplants at City of Hope (about an hour away). That where they send all of their stem cell transplant patients. I asked about if family members can donate stem cells and he said that actually they would use my own stem cells so there would be no need for a donor. Sounds very futuristic and makes me hopeful that at least there’s a plan for worse case scenarios. Just imagine the advances they will have for lymphoma by the time I have to worry about it again!
Now to focus on the next steps - getting through these 3 rounds of methotrexate chemo. I’ll be starting a 24 hour infusion of this drug sometime tonight once I go through a bunch of tests and screening. I already had blood work done this morning and a COVID test on Monday (Negative). That was my 4th COVID test and I’m sad to say this is becoming more and more of a concern for me. The numbers all over are going back up again, but especially in SoCal. The hospitals are all at capacity and they expect it to get worse once the Thanksgiving rule breakers all start getting it. Within the Kaiser hospitals in SoCal there are over 1200 patients - and that’s not counting the people with COVID who are staying at home - that’s just the cases serious enough to require them to be admitted. It was clear my oncologist is pissed and rightfully so. He let me know that even though I am scheduled to come back for my 2nd round of methotrexate on 12/31, there’s a chance my treatment may have to be delayed because of COVID. With so many positive patients in the same hospital, it may be too risky with my compromised immune system to come in. I’d be pissed if I were him too. His patients’ treatment is being jeopardized because people are over wearing masks and staying home. The pandemic is not over - in fact, this is the worst it’s been in SoCal and still on the rise. There’s a new Stay At Home order right now, but a lot of businesses are not following the guidelines. Offices are still open, schools are still open - if you drive on the freeway anywhere around here, it sure doesn’t look like it did back in March. When we were all sent home on March 13th, the roads were eerily empty - but not anymore. I certainly understand that people are tired of all of this and my heart breaks for the small businesses that have suffered due to the quarantine - but my health and so many other people’s health is directly affected by increased COVID cases. If I get COVID I don’t have the immune system needed to fight it and I could die. I didn’t come this far to now let COVID kill me. Health needs to be prioritized above money - even if that means that small business owners will suffer. I also think the government should be doing more to help those small businesses by keeping them afloat until we have a vaccine and the numbers go down so that they can reopen. While we’re on the subject, I don’t think the outdoor dining was the issue of numbers going back up and there’s no proof that was the case. Eric and I have gotten to enjoy several date nights eating outdoors with all of the safety regulations being met and we’ve felt very safe. I get so furious when I see people out and about without a mask - and just so you’re warned, my 6 year old son will yell at you across a crowded parking lot to pull it up over your nose. I saw a post recently saying that they should have to wear a mask to make other people “feel” safe. This isn’t about feeling safe - masks are making us safe. That’s nice that maybe you don’t need to worry about catching something that can kill you - but I do - so please, I’m begging you - keep your mask on and stop having house parties. Thanks.
So now, I’m sitting in the lobby of the 6th floor - the oncology floor - waiting for my room to be ready. They let me know at about 11 that it may be a few hours until my room is ready - the patient in my room just died and the family is allowed to stay with the body for 4 hours before they have to leave. Cool cool cool - not exactly information I needed to know about how the room became available, but lets just hope he’s a friendly ghost. It’s never lost on me just how serious this all is and how lucky I am to be in the percentage of patients who get to say they’re in remission. I know it may not last forever, but for today, I’m cancer free.
