Today started out with me needing the IV nurse and it was a good omen. I know, needing someone to place a needle in you, usually not a good omen, but this IV nurse who I had noticed that she wears a pink ribbon on her coat decided to tell me her story today. While being well aware of my "left arm only" need she told me that she ended up needing a bilateral mastectomy and that she decided to go with the arm that had the least amount of lymph nodes out. She slid my IV in without a problem and then told me that was 17 years ago and she's been cancer free since. I told her she was giving me such hope. We chatted about why I needed the IV (routine follow up for the PRESENT study) and I told her the details of the study. I thanked her for her sharing her story with me and took it as a good start to the day.
With IV in hand (well, literally it was in my left hand) I was able to get my PYP injection and then the technetium 99 for my MUGA scan. In preparation to have my heart checked up on and to plump my veins up I drank some extra water in this morning and that would be a decision I would come to regret. As they strapped me down to the same machine that had scanned my bones (and I previously interrupted because I had to pee so bad) it was the same student as before. First two scans are easy, the third and final scan involves my arms over my head. A very uncomfortable position for me to start with. Even more uncomfortable since all the scanning last week hurt my back (34 going on 104). And to add fuel to the uncomfortable fire that was scan #3, I really really had to pee. So much so that you could see my heart rate continue to climb as I tried hard not to squirm or call out. When the student came in I told her and she helped hurry me out of there. She made certain to give me my "I'm radioactive" on purpose card so that I can enter Federal buildings with documentation as to why I'm setting off the geiger counters. Note to self, no flying too close to having all the scans.
To say waiting for my scan results and things makes me a little cuckoo would be an understatement. But the time had finally arrived for my oncologist to give me the results. After an uneventful blood draw with only 4 tubes and more urine (theme of the day apparently) my oncologist walked into the room and said the greatest line ever
"Everything looks good."
When you've prepared yourself for whatever news is coming down the pipeline you sit there a little stunned at first. And then like when the Grinch realizes the true meaning of Christmas (you know a little late to the game) the perma-smile creeps over you face.
And let me tell you it feels like Christmas morning. I did tell my oncologist a couple of my concerns, my on going back pain (outside of hurting it with scans) and that I really felt the scar tissue under my scar was getting bigger. She inspected the scar and said she thought that if it had changed it was very minuscule and that she was hesitant to expose me to more radiation via diagnostic mammogram and ultra sound (she would do it in a heart beat if they would allow for just an ultrasound). I asked her if I was being a crazy person.
She said and I quote "You are not being a crazy person".
Banner day for me here. I'm going to have t-shirts made with that printed on it. We decided that because I already was going to have a mammogram in the beginning of May and have physical assessment with my Surgeon that day, that it was reasonable to wait. I agreed. She said when she went back and read her previous notes that that there didn't really appear to be any worrisome changes. She tole me if I changed my mind, to just get in contact with her.
She said the my bone scans were great, MUGA (heart scan) was still the best she had ever seen and that there was nothing on my CT scan. She said my labs looked good, iron deficiency anemia has gone away. Yes. And I was cleared for the LAST round of injections
Finishing Up the Vaccinations
Once I was cleared to have my vaccines the research nurse got the order down to the research pharmacy. I asked her for written copies of all of my scans (as if it weren't true and that it would somehow go away) and we chatted about upcoming vacations and how my niece is doing.
Then she prepped my leg with alcohol for one last time. There was a new research RN who was there training and she was finding out what a quirky patient I was. We told her about how I request that my injections be done in a square because the engineer in me really liked the order. She gave me a polite nod. And then came time for the shots.
Damn I forgot how much those stung. But, just very briefly. They do swell rather quickly after. We celebrated my completion of the trial!! Yay!!!
And then I realized....I totally forgot to ask about what my follow up would be now. I was too excited. She told me she would look at the protocol and email me. (Scans annually, blood work every 3 months) I can totally do all of that. I was way to excited about being NED and finishing injections.
Now just to document the swelling and redness in the leg for 3 days. It's a small price to pay for what seems to working. Let's keep it going. I want to be that IV nurse telling some other survivor about how 17 years ago I was once a guinea pig for the standard treatment that is the breast cancer vaccine. Life goals.
And now I realize how tired I am. I think I will celebrate with an early bedtime and throwing myself a party. And baking a cake and dancing to some Bon Jovi. Yup, that seems like a good week long celebration.