:'(
OKAY, now that my fake friends have left.. How are you guys!? I've had a pretty eventful August. Let me tell you all about it.
Post-chemo PET Scan
I had a PET scan on August 4th to see how much effect chemo had on the cancer in my lymph nodes and in the mass. Instead of getting the PET scan at the place I had gone to for my previous 2 scans (an external radiology place), I went to a branch of my cancer center that had its own PET scan machine. I asked the appointment people about the switch-up and they gave me some answer about getting results back faster (within 48 hours) from their own radiology people... even though the external place takes about 48 hours anyway to get a report written up.Anyway, I got what I can only surmise to be a newbie nurse accessing my port for the radioactive tracer injection. Prior to this, my port was accessed every 2 weeks by some really skilled nurses. I mean, there's no avoiding the big poke of the Huber needle, but they minimized the pain and bruising. My experience with this new nurse was a comedy of errors. She vocalized everything she was going to do and moved extremely slowly to the point that I could FEEL the needle sliding. cringe. If you thought that was bad, she had to access my port twice. The first time, she stuck my port at the wrong angle and there was no blood return. I think it's quite a feat to stick a needle into a port that is connected directly to a vein and not get any blood out. She pulled out the Huber needle and I immediately started bleeding from where she had stuck me. I was a little shocked.. and so was she. So here I am with blood dripping down my chest and she was unprepared for the situation. I happened to be holding gauze to my finger where I was pricked for a glucose test and had to stop my own bleeding with that. She then re-accessed my port but not before popping a syringe of saline all over my pants (she was really excited to be doing this). After about 25 minutes of this fumbling, my port was finally accessed and ready to be injected with radioactive tracer. The injection of the tracer took about 2 minutes. hah. That whole access ordeal left me with 2 bruises at my port area and some residual pain (maybe it was in head?).
After that, I had a newfound appreciation for the chemo nurses who were able to access in under 5 minutes with little pain. SO THANKFUL. I emailed them and thanked them. And I thanked them profusely the next time I saw them. omg thank you. One of the nurses offered to access my port a day in advance of my next PET scan so I wouldn't have to have a rando doing it. <3 Enough railing on that other nurse.. the radiology tech was super good though.
PET Scan Results
I saw my medical oncologist about a week after the PET scan. My expectations about my results were...neutral. I didn't think chemo had taken care of all the cancerous activity and my oncologist had prepped us for that. When we saw him, he said there was still some activity (surprise) and he was going to forward my case to a radiation oncologist to take another look. The radiation oncologist was going to decide if I needed radiation and for how long. He said I had about the best result coming out of chemo that he could have hoped for because all my lymph nodes looked clean. I had mixed feelings - I kept telling myself that this was good news because no more cancer in the lymph nodes! But I'm still not done. At that point, I was 2.5 weeks out of chemo and my energy level was good. My white blood count was still low so I was still avoiding people. I was ready to resume normal activities, but this radiation thing was still looming over me. It's hard to get excited about results when this cancer thing was still not over.Radiation Planning
I finally had a consultation with a radiation oncologist on August 20th. He actually pulled up my PET scan results from back in January when I was diagnosed and walked us through the different views of the bulky mass in my chest and what he thought about it. It was the first time I had seen the PET scan from January and it was slightly jarring, but so fascinating. I'm not a biology person (I got my first B in high school in biology and I still hold a grudge) and I know embarrassingly little about human physiology and anatomy (although dealing with cancer has taught me a great deal). I had the physical dimensions of the mass from the PET scan written reports but I could not and had not pictured it inside my body. After seeing the scans, all I could think about was how could I let this thing grow inside of me for so long and why did I ignore and downplay my symptoms?? To the layperson (me), it looked like the the mass almost spanned front to back in my chest. NO WONDER I had breathing problems! Where the hell was my lung supposed to go!? As for the radioactive tracer "lighting up" the cancer mass, it was like the sun was in my chest. The radiation oncologist also pulled pulled up my interim PET scan from April to compare (this was the scan taken after 2 cycles of ABVD chemo) and the difference was stark. The mass had shrunk so much relative to January. The funny thing was that he did not have access to the PET scan from early August. You mean, I went to your in-house radiology department AND had the worst port access experience in the last 8 months and you still couldn't get my PET scan results into my medical record after 2 weeks!?!? I was still grateful that he took the time out to walk us through the scans and talk through my case with me. He said my case was a little unique since bulky masses in Hodgkins cases usually are more centered in the body, but mine was to the left a little. He ended talking to my medical oncologist about the whole case, looking at my recent scan, and recommending radiation (20 sessions). Since the mass is right behind my left breast, there was no getting out of radiating that. We discussed side effects - short term is fatigue. Long term side effects (which are really rare) are heart problems (I'm going to be monitored by a cardiologist with annual exams) and secondary cancers (such as breast cancer. I will probably be starting mammograms early). He assured me that the radiation was low dose and the risks were low.. relatively.I had a radiation planning meeting the week after that on the day before my 30th birthday. The radiation planning meeting consisted of a CAT scan and drawing on my chest. The nurse wished me a happy early birthday and then asked me to take a pregnancy test. She hadn't "realized I was that young" and since I was of child-bearing age and about to get scanned, they had to be sure I wasn't pregnant. Hearing her say I was really young really put me in a weird state of mind for 10 minutes -- I'm sitting here while she tests my urine on my last day of being 29, hoping I'm not pregnant (even though I know I'm not because abstinence really does work and I have an IUD to prevent immaculate conception), and thinking I'm waaaaaaay too young for this shit. But I guess it's better that I'm young? I've got the energy and resilience to fight this... I guess. It's hard to see an upside to getting cancer at 29, but that's one of them!
I got CAT scanned and got 3 dots tattooed onto my chest - 1 on each of my sides at about boob level and 1 between my boobs. The dots are going to be used to plan where they radiate and then during actual radiation to line me up with the machine so they can radiate the same spot each and every time. Getting those 3 dots tattooed hurt like a bitch! I don't think I'm ever going to get a voluntary tattoo. I did not and have not taken a picture of those because they are the most uninteresting tattoos ever. The dots aren't even the same size and you can hardly tell they're there. I also got a "vac bag" body imprint made. That sounds cooler than it really is. It's this moldable cushion (cushion is a too strong a word since it was hard and uncomfortable) that the tech molded around my body by using a vacuum to suck the air of this bag of stuff that will hold me in place during radiation.
To be continued since it's dinner time now.
