Finally Home & Feeling Good
I hope I didn’t scare all of you away with the gross post! After posting that one in the wee hours of the morning last Sunday, I was awakened at 5 am to have more blood drawn and I was feeling confident they would finally be releasing me from the hospital. It took about an hour to get the results back and sure enough all of my levels were finally high enough that I could be set free. The doctors were waiting for my white blood count to get to the normal range of 4-10 and the last blood draw before my last post was only at 3. The results from Sunday morning showed my whites at 10 - that’s the high end of normal! (I’m celebrating small wins) I was so thrilled to finally be getting some good news and finally being able to get home to tell Harrison Happy Birthday in person.
Eric dropped the kids off at my moms at about 11 am and headed down to the hospital to pick me up. We rushed home so I could shower and change and feel a little more human and then we headed back over to my moms to celebrate Harrison’s big #6. Even though I was beyond exhausted and so physically and mentally beat up, nothing was going to stop me from partying with my family. It was so fun watching Harrison and all the cousins swim and then we had dinner and cake and by 5 pm I was ready to go home and get some rest. I still get surprised at how quickly I run out of energy. My brain has way more energy than my body and that has been a very frustrating thing to realize. I simply can’t do as much in a day as I used to. I’m learning to be okay with this.
This is my good week - and it certainly has been a good one, although busy with lots of appointments and errands. Monday was the much anticipated PET scan. This was my first PET scan since I began treatment and the first indication of if the treatment is working. Now for those of you who were able to stomach the Gross Post, you know that we got a little sneak peek at the tumor from the CT scan that was done last week - so we already knew that the PET scan would show a big decrease in size from where we started, but the PET scan is able to provide a lot more information and detail than the CT scan so I was still excited to get these results. My mom picked me up Monday morning and drove me back to Anaheim for my scan. It’s a funny setup they have there - the PET scan machines are so expensive, that the Kaiser hospitals share them. Because of this, they keep the machines in mobile trailers behind the hospital and they drive them back and forth between several southern California Kaiser hospitals. We knew this from before, so this time we were prepared with a plan of how my mom could hang out with me (such a rare occurrence to get to hang out with someone at a doctors appointment with all of the COVID rules). So I checked in for my appointment and then they lead me through the hospital, out the back door, and over to the PET scan trailer where there is a little tent and chairs which is the waiting area for patients - this is where my mom was waiting. She parked and walked around to the back of the hospital and snuck into the outdoor waiting area so she could hang out with me while I waited for the radioactive juice to make its way into my body (about 40 minutes). It was just so nice to sit outside and chat with my mom while she ignored her work calls - I have gotten so much uninterrupted mother daughter time in the past few months - I’ve really enjoyed that part of this terrible journey. Thinking back to June when I had my first (and 2nd) PET scans, it wasn’t lost on me that every part of this PET scan was a complete 180. I wasn’t nervous or anxious or in pain - I was excited. I felt like we were finally going to see the reward of all of this chemo crap. I needed to see some progress and improvement - I needed to know that this was working. I have seen so many people who suffer through months of chemo just to find out that it’s not working for them. There are so many different combinations of drugs for oncologists to choose from and various treatment options, and while I trust they know what they’re doing, it’s still scary to think that you’re putting your body through all of this poison for nothing. I walked into the PET scan trailer like an old pro - not scared of anything! After it was over I skipped out of there hoping we’d be getting the results back soon.
Tuesday and Wednesday were busy days filled with kids school assignments, errands, and virtual back to school night - but man did it feel so good to have normal tasks to do as a distraction from cancer and chemo and hospitals and appointments. But, the best part was that I felt good - like really good - like almost normal. No pain, so side-effects, no residual issues from last week’s surgical nightmare - I just felt so good. I feel like I got a lot done too which is so nice to feel productive. I picked up some textbooks from the kids’ school, I got my car washed, & I got a smog check - so many things to cross off my “to do” list (I love a list - I’m the type of person who will make a list of things I’ve already done just so I can cross them off).
This morning (Thursday) I had to go back to the hospital in Irvine for my post op appointment with the surgeon who did my surgery last week. I feel great down there - totally back to normal - so I was really hoping she would think so too. The appointment was quick and easy and she let me know that she would be giving my oncologist the green light to proceed with chemo for next week - apparently they wanted to make sure there was no evidence of any infection before deciding if it was safe for me to continue. I’m so glad everything has healed so nicely and quickly and more importantly, that there would be no reason to delay my treatment. The growth rate of this GD tumor has always been my biggest concern - I’ve been terrified that the tumor is growing faster than the chemo can kill off the cells. We need to stay ahead of it if we have any chance of killing it all.
Finally this afternoon (Thursday) I got the call from my oncologist with the long awaited results from Monday’s PET scan. Okay are you ready for this? Spoiler - it’s good news. Tumor has shrunk in half. He is measuring it at 3.5 cm - that’s so small, right? After the first scan it was so big that it was hard to see if there were multiple tumors or just the one - now he can clearly see that there’s only the one tumor - no evidence of any secondary masses or new masses. More than the size of the tumor, my doctor was really excited to share the info about the brightness of the tumor. Last time when I watched the video of my scan I could see the whole screen light up like fireworks or like lava. Let me back up - so during a PET scan, they inject you with radioactive fluid that will attach itself to any infection or cancer in your body and that will cause the images to light up when they scan over the cancerous area. The brightness level of my initial scan was so blindingly bright - they classified that level of brightness at 37. The brightness level of my tumor now after this new scan showed the level at 3. That’s right - 37 to 3. I’m no mathematician, but that’s like a tenth of what it was. Size down by 50% and Brightness down by 90%. This means we’re killing the cancer faster than it’s able to grow. My biggest fear has been calmed. He even said there are several dark spots on my tumor - spots that aren’t lighting up at all - indicating that some of my tumor has clumps of DEAD cells. He said eventually the dead cells go away leaving an even smaller tumor - this is how treatment works. Cancer cells die, unable to reproduce, until the tumor is all gone. So, this means that really my tumor is smaller than the 3.5 cm that he can see since so much of it is already dead. We’re killing it. It’s working. Another good thing is that none of my organs are lighting up or showing any evidence of cancer. In the initial scan since everything was all smashed in there with my giant tumor, it kind of looked like there were some spots on my liver and pancreas that may be lighting up a little with cancer - so this has always been a concern that there may be small tumors in those organs too. But, now that the tumor is so small, he can easily see that that my organs are just fine. This is a huge relief - this means I might be able to drink again once I’m done with treatment. (My oncologist had said that while there’s a chance of cancer in my liver that I wouldn't be able to drink, maybe forever - and while this may not be a big deal to some of you, it’s a big deal to me) I love a fancy gin cocktail or a glass of pinot and I can’t wait to get to enjoy these things again in another few months. He went on to let me know that he is estimating now that I’ll need 6 rounds of this chemo which means I’m half way done. After the 6th round I’ll get another PET scan and hopefully the tumor will be totally gone. All of this was just the best news I could have asked for - we have proof that it’s working. Who knew - science and medicine and trained medical professionals were right! I put my faith in my oncologist and it was right decision. This is the exact motivator I needed to push forward. I can do 3 more rounds no problem!
So now I have 3 more days of my good week to enjoy before getting back to the bag & pump. We have some fun things planned - outdoor lunch with my mom tomorrow, another trip to the stables to visit our favorite horse Larry on Saturday, romantic date night with the hubby, and a birthday dinner Sunday to celebrate my mom and nephew Owen. It will be a great weekend, especially after getting such great results today. We have so much to celebrate.
