I have so much enjoyed all the tumor-fruit-comparison suggestions from near and far (finger limes, okra, even 3 olives on a swizzle stick--so sophisticated and celebratory) and, of course, I am so appreciative of all the happy and supportive messages from so many! It has been keeping the smile stuck on my face! Don't you feel like we did this together? I do!
We are still waiting it out as far as insurance approval for the proton beam, with no indication of how long this wait could go on. There was a little bit of a hitch in my giddyup this past week when, instead of high-fiving me and slapping the Seal of Remission on my chest, the second hematology oncologist said yeah, well, hmm, I'd like my peeps to take a look at this PET because I think the summary is a little ambiguous and I just want to make sure and if they don't think the tumor is fully negative I'd like you to have another biopsy and...basically it was needle-scratch-stop-that-happy-dance-music.
Talk about being a killjoy. A wet blanket. A party pooper. Raining on someone's parade. Bursting someone's bubble. Putting a damper on things. Pissing in someone's cornflakes, to put it indelicately.
It was a true test of my ability to stay positive, to resist the urge to catastrophize, to stay in the moment, and to avoid stressing out about things that are beyond my control.
Sadly, I was nowhere near as successful in that endeavor as I'd eventually like to be--I had nightmares about bronchoscopies and was turning into a little bit of a "what if" basket case.
But the oncologist called me on Friday and said her peeps concurred with the previous findings regarding the tumor. Whew!
However, she did leave me with this little nugget: If I can get the proton beam, she definitely recommends it. But if I can't, after consulting with various colleagues, she would have "reservations" about doing the regular IMRT radiation because the area to be radiated is right next to my heart.
I asked her what she would do if she were me. That was silly of me--I'm sure the litigious society we live in dictates I wouldn't get a straight response to that question. The most I could get was "it would give me pause."
Hmph. THAT wasn't a very satisfactory answer.
So I'm curious if, once seeing the current PET and having read the summary (and the "new" summary), Dr. Ray Donc would feel the same way. Questions, questions.
All that being said, until we get the word one way or the other on the proton beam, all of this is just an academic discussion. And I'm not going to chew on this too much until I have to. I'm not trying to be Queen of Denial...just trying to avoid the catastrophizing, etcetera, that I mentioned previously.
But I am more than eager to get a date on the calendar; the sooner the treatment starts, the sooner it will end, and I would honestly like to wrap this all up in a nice bow and be done with it.
Last but not least, for anyone who is participating in a hair pool, here's the skinny on what's going on up top: After buzzing the fuzz down quite a few times, it looks like my hair is coming in all the way around, certainly thicker each time it has started growing back. So I'm going to leave it alone for now and just let it keep growing. As for color, well, it looks like Raiders Nation here: Black and silver, baby. Yep, I kid you not. Silver, not so much a surprise. But black? I wouldn't have guessed that in a million years.
Sunday, April 24, 2016
Thursday, April 14, 2016
Veg and Dairy, Not So Scary!
Drumroll, please!
I am officially in remission! Whoo hoo, yessssss, whoop whoop, suh-weeeeet, let the adult beverage consumption commence in the legal-age population!
For those who want stats: The residual mass is 2.3 x 5.8 cm--activity is 2.1.
Translation: What's left is considered scar tissue and is essentially dead. (Better it than me!)
Fruit translation: Um, well, I can't think of a fruit with which to make a comparison.
Vegetable translation: A healthy-sized baby carrot.
Dairy translation: Half a stick of string cheese.
Happiness translation: No words. Just relief and gratitude!
Still waiting to hear which machine wins in the Battle of the Radiation Championship. I'm crossing fingers that Proton Beam will carry the day--but I will update once I know for sure.
Wow...Team Andrea has just been the very best. No lie. I can't thank everyone enough for all the thoughts and prayers and everything else!
And now...I think I have a happy dance to be doing!
Sunday, April 3, 2016
Paging Dr. Ray Donc
I walked 3 miles with my dog the other day--for me, that qualifies as a half marathon! To be honest, I hadn't planned on walking 3 miles, but I got a little turned around and couldn't find my way out of this one neighborhood. By the time I finally figured it out (chemo brain? general directional impairment?) and made my way home, well, there was 3 miles. Thank goodness my dog is 11-years old and was willing to walk as slowly as I was without complaint (who am I kidding, it gives her more opportunities to sniff and pee). And I volunteered to judge for the past two days for a tournament on behalf of my daughter's team, and I survived without falling asleep (embarrassing!) during my judging! Both are evidence that I am feeling stronger and better and, I have to say, it was really lovely to be involved in something normal and routine like I used to be.
We met with the radiation oncologist who works with the proton beam machine. When the hematology oncologist at the facility first talked to us about setting up an appointment, I thought she was going to set me up with this guy, Dr. Ray Donc. It took me a moment to realize that what she said was: "I'm going to make an appointment for you with RadOnc." Meaning radiation oncology. Duh. But for our purposes I'll just keep calling him Ray Donc.
Hubs and I really like the guy--he is a straight shooter, clear, thorough, good at listening and answering questions in a manner that is both detailed and refreshingly "layperson" friendly. He laid out benefits, percentages, and possible short- and long-term radiation effects of IMRT (regular/current standard) radiation and of proton beam radiation.
Now I'm even more excited about the possibility of proton beam therapy. Using this technology would allow me to avoid increasing my risk of developing a radiation-induced breast cancer, esophageal cancer, and/or heart disease (arteriosclerosis/hardening of the arteries). Considering that radiation can cut the likelihood of my relapsing in half, I'm all for it. I'm just not all-for the potential quality-of-life altering side effects that radiation could possibly bring.
The beauty part of all this is that right now the facility charges the same for IMRT as proton beam because they have a vested interest in accumulating long-term data on the reduction of radiation side effects when using this machine: They can't get the data if the insurance won't pay for treatment. And the other beauty part is their radiation oncology "panel" reviewed my case and they think I am an ideal candidate--tumor location wise and general health and age wise; it's likely I will live long enough to, if I were going to be unlucky enough to, experience radiation side effects--if I were much older and in poor health, it would be more likely I would die before ever developing the long-term side effects. That sounds harsh, but that's the way an insurance company would argue against it. So these folks are going to work on getting approval, and they seem pretty enthusiastic about taking on the project.
I've been so impressed all along this journey with the caliber of doctors, nurses, and technicians who have been been a part of my care--I can only wish to be so lucky in my "regular life" interactions with doctors. The compassionate care and the sterling communication skills of these medical professionals is something I would hope every medical care provider would aspire to show patients.
The PET is scheduled for April 12, and I'll meet with my regular oncologist for results on April 14. I'll be able to give you the "what size fruit" report on the tumor after that!
We met with the radiation oncologist who works with the proton beam machine. When the hematology oncologist at the facility first talked to us about setting up an appointment, I thought she was going to set me up with this guy, Dr. Ray Donc. It took me a moment to realize that what she said was: "I'm going to make an appointment for you with RadOnc." Meaning radiation oncology. Duh. But for our purposes I'll just keep calling him Ray Donc.
Hubs and I really like the guy--he is a straight shooter, clear, thorough, good at listening and answering questions in a manner that is both detailed and refreshingly "layperson" friendly. He laid out benefits, percentages, and possible short- and long-term radiation effects of IMRT (regular/current standard) radiation and of proton beam radiation.
Now I'm even more excited about the possibility of proton beam therapy. Using this technology would allow me to avoid increasing my risk of developing a radiation-induced breast cancer, esophageal cancer, and/or heart disease (arteriosclerosis/hardening of the arteries). Considering that radiation can cut the likelihood of my relapsing in half, I'm all for it. I'm just not all-for the potential quality-of-life altering side effects that radiation could possibly bring.
The beauty part of all this is that right now the facility charges the same for IMRT as proton beam because they have a vested interest in accumulating long-term data on the reduction of radiation side effects when using this machine: They can't get the data if the insurance won't pay for treatment. And the other beauty part is their radiation oncology "panel" reviewed my case and they think I am an ideal candidate--tumor location wise and general health and age wise; it's likely I will live long enough to, if I were going to be unlucky enough to, experience radiation side effects--if I were much older and in poor health, it would be more likely I would die before ever developing the long-term side effects. That sounds harsh, but that's the way an insurance company would argue against it. So these folks are going to work on getting approval, and they seem pretty enthusiastic about taking on the project.
I've been so impressed all along this journey with the caliber of doctors, nurses, and technicians who have been been a part of my care--I can only wish to be so lucky in my "regular life" interactions with doctors. The compassionate care and the sterling communication skills of these medical professionals is something I would hope every medical care provider would aspire to show patients.
The PET is scheduled for April 12, and I'll meet with my regular oncologist for results on April 14. I'll be able to give you the "what size fruit" report on the tumor after that!
Subscribe to:
Posts (Atom)