First Still The Worst
It is really a mental boost to know that as I improve each day I get to keep on improving and I don't have to get knocked back to square one by another round of chemo! Yesssss! I'm doing the now-predictable-for-me routine of pushing myself too much one day and paying for it the next; I'm a slow learner, I guess. This has been a surprisingly (to me) slow recovery; I had a much rougher time of it this final round than I had the two rounds prior. My stomach has been relentlessly queasy both on and then weaned off the anti-nausea meds; perhaps this is just going to be a slower recovery in every aspect of Chemo World. So to rate the rounds in terms of hardest to easiest, I would say:
1=Without a doubt the very worst of the lot. If all the rounds had been like that, I wouldn't be doing anywhere near as well or be in as positive a frame of mind as I am. I may even have ended up in the hospital.
2=Less hideous than the first, thank goodness!
6=Perhaps just as bad as number 2, but it's been a long time, so hard to compare.
3=Better.
4=Even better.
5=Feeling like it's a piece of cake--whoo hoo, bring it on, so cocky, I can take it, easy peasy.
My Elephant Hair/Chemo Fuzz is thicker now, but still pretty sparse on the sides and at the nape of my neck, so I'll be buzzing my fuzz crop again this weekend and looking forward to seeing the hair come in much thicker (I hope). Now is the time to start the betting pool: straight, curly, color or colors, thick or thin? So many surprises in store!
Rock Star ENT
I had my appointment with the I Found Your Cancer ENT Doc to check up on my helium voice. I had always felt so terrible about him having to send me out the door in November with such terrible news and then never seeing me again; with the CT scan looking like a big ol' hunk o' lung cancer, this doc likely thought he was handing me a death sentence After the surprise-I'm-alive greeting and lavishing him with thanks, hugs, kudos, praising him in front of his staff, and in general making a much-deserved fuss over him, we got down to checking out my vocal cords. The left vocal cord is still paralyzed. My assumption that all it would take for my voice to return to normal is for the tumor to shrink and stop exerting pressure on the nerve was just that--an assumption, and a false one, turns out. It can take from 12 to 18 months for the nerve to my vocal cord to repair/regenerate, if it's going to do that at all. So it is simply a waiting game for me and, with such a long time to wait, my concerns about my voice have gone to the bottom of my priority list.
If the vocal cords remain paralyzed after I wait it out, there is a surgical procedure that can be done that inserts a little wedge-shaped doohickey--um, I mean laryngeal implant--in my throat to physically reposition the vocal cord that is simply stuck in one position only.
I'll be honest with you--I'm not necessarily chomping at the bit right now to have any more "procedures" done, so this issue is going to rest squarely on the back burner for now. I see the Rock Star ENT again in 3 months to check things out post-everything. And likely to keep lavishing praise on him. He'll get tired of it before I do.
Radioactive
I finally had my appointment for a second opinion about radiation therapy. This hematology oncologist also supports a course of radiation given the original size of my tumor and its aggressive growth pattern. So, the short answer to the question of whether or not I am going to do radiation therapy is YES, I am. But this doctor added some variables to the mix that make this a little more complicated going forward. This doctor is advising that I have radiation done at her facility because they have a proton beam radiation machine--one of only 13 in the country right now. Why does she feel proton beam is better--aside from the fact that it sounds all cool and Star Trekky? (Okay, she didn't say that, but don't you agree?) The proton beam radiation will be less damaging to surrounding tissues (see below), and since my surrounding tissues are my lung and heart, I think we can all agree that less damaging is a better scenario. That being said, it all goes back to insurance: Will my insurance approve radiation using this state-of-the-art technology? We cannot take on the full cost of this treatment should the insurance deny coverage.
According to Cancer.Net: "Proton therapy, also called proton beam therapy, is a type of radiation treatment that uses protons rather than x-rays to treat cancer. A proton is a positively charged particle. At high energy, protons can destroy cancer cells." Um, okaaaay, and this is different from other radiation therapy how? How is it better?
According to the National Association for Proton Therapy:
"There is a significant difference between standard (x-ray) radiation treatment and proton therapy. If given in sufficient doses, x-ray radiation techniques will control many cancers. But, because of the physician's inability to adequately conform the irradiation pattern to the cancer, healthy tissues may receive a similar dose and can be damaged. Consequently, a less- than-desired dose is frequently used to reduce damage to healthy tissues and avoid unwanted side effects. The power of protons is that higher doses of radiation can be used to control and manage cancer while significantly reducing damage to healthy tissue and vital organs." (I added the bold--for the full and fascinating-for-science-geeks-like-me article about how they can direct the beam so precisely, see http://www.proton-therapy.org/howit.htm)
So what happens now? I am still waiting to have my PET scan scheduled to find out the tumor activity status now that I am finished with chemotherapy. I do not know at this point if I have not yet been contacted regarding scheduling because my insurance has not approved the scan --I've called to follow up and will call again. Frankly, it's making me nervous. I don't like feeling nervous.
Any radiation oncologist will need to see the results of a current PET--proton beam or not. So it has to be done. I have an appointment to see the proton-beam oncologist and I will be able to ask questions about the strength/duration of the recommended course of treatment, what the cost is, and basically how much of a pit bull this medical facility will be when seeking to get approval for the treatment. In the case the insurance will not cover proton beam, I will move forward with "regular" radiation treatment, and I suppose I will feel hugely disappointed at not being given the chance to minimize the potential negative side effects of radiation. But I will have radiation nonetheless.
This oncologist also told me that I have a little more time leeway--she said starting radiation 1-2 months after chemo is finished is preferable, so I'm not on such a strict 30-day-must-start-radiation-or-else expiration date as I thought I was. She also had great things to say about my current oncologist and my treatment thus far. So that's always nice to hear.
Post-Chemo Jams: "Six Months in a Leaky Boat" by Split Enz, "Praan" by Garry Schyman, "The Only Exception" by Paramore, "Message in a Bottle" by The Police, "Iridescent" by Linkin Park, "When Love Comes to Town" by U2 and B.B. King, "House of the Rising Sun" by The Animals, "The Boxer" by Simon and Garfunkel, "Thank God for Girls" by Weezer, "Defying Gravity" by Kristin Chenoweth & Idina Menzel (a/k/a Adele Dazeem), and "Somewhere Over the Rainbow" by Israel Kamakawiwo'ole.
