The Tentative Plan

Well, my apologies for not posting sooner. I really need to cuz if anything, I tend to forget things a LOT lately, so at least for my own personal reference, I need to record what has gone on so I have something to look back on. Oy.

My last day at CTCA was much better. Meds made for a smoother part 2 of my MRI and the results were actually pretty good. My bones are actually getting stronger and healing from the cancer mets - which is great news. My lower back pain is finally diagnosed as degenerative - he says my lower back looks like that of a 60 year old - nice. So I'm going to be meeting with another physician there to help me manage that pain, he wasn't there while I was there, but I will most likely meet with him next week. Which brings me to my treatment plan. My oncologist feels I'm a candidate for a procedure called theresphere - where they go in through the vein in my leg, administer these tiny glass like beads filled with radiation to the blood supply feeding the tumor on my liver - the beads then block the flow of blood to the tumor, then release the radiation directly onto the tumor, thus, hopefully, killing it. Once administered the release of radiation takes about 5 days - so I would need to stay overnight in the hospital the day of the procedure just to make sure I heal from insertion site, then stay away from people for the next 5-6 days cuz I'll literally be radioactive. Pretty cool,l right? This is actually what I was hoping to be a candidate for, so I was pretty excited. He would then schedule me for about 3 months of chemotherapy afterwards, which drug we're not quite sure yet. He had even called my current oncologist and discussed this with her too, and he shared with me that she had agreed, which made me feel even better. That story later changed I think, but I'll get into that later.

So they need to check with the surgical oncologist who does this, who was not there but will be back on Monday, then they will get in touch with me to schedule everything that goes along with getting this done. They actually do a 'mapping' of sorts to my veins, so they know ahead of time which veins they need to access (makes sense). So this will be an orchestration of sorts for me - trying to manage my family while I get this done. Yes, this is exactly what I was thinking while they were explaining it - who is going to watch my kids??? I really want my husband with me but will he get fired for going with me to this??? Life just takes hold of our excitement sometimes and pulls us back down to reality. But seriously, this whole procedure just makes sense to me. If we can treat the liver directly, why isn't that just the best option around? Especially while my veins are still in decent shape - chemo just ruins them, so before I go on the chemo merry go round, why not try this first? It just makes sense to me. So the drive home was strange, PJ and I were both deep in thought pondering this, then letting various thoughts fly out of our mouths, but it was as if we were having an internal and external conversation the whole time. We are excited, just still feeling like a 'fish out of water' at the CTCA, the treatment plan, the future. I think we got comfortable in our little 'cancer world' and this just shook everything up a bit. Not necessarily a bad thing, just different. Plus, when we were staying there, it was great, don't get me wrong, but it was like we would start to kinda enjoy ourselves, then remember why we were there and kinda subconsciously stop - it was really weird. PJ and I got a lot of sleep, which was great - and had some real conversations - ones with beginnings, middles and ends - which was also great. My girls were fabulously taken care of for three days by my dear mother and niece, I am eternally grateful for their help. To be able to keep my kids at home, in their own surroundings and not interrupt Madeline's school schedule brought a sense of peace to my heart - it allowed me to not stress about them, which was priceless.

I am having a hard time with getting care from someplace other than my current onc. I am so tied to her and that facility - I mean, look at the history? I feel like I'm cheating on her or something. She isn't too happy either. She called me at home a couple times asking me all sorts of questions and giving me information on a patient of hers that had this procedure done and while cancer wise it worked, one of these glass beads got into their stomach lining and they were throwing up every day. Some other opinions were shared too, and I left this conversation feeling empty, sad, lost, and confused. I know that I am coming from a place that just wants this thing gone - out - done and over with. While I understood the logic in 'we'll try this drug till it doesn't work, then the next drug till it doesn't work, then the next drug - ' I don't want to be pumping my body full of drugs for the rest of my life. If we've exhausted every other possibility and that is what I'm left with, then fine - but I just thought maybe, maybe there was another option and that maybe, a team of dr's coming together to come up with it would be the best way to find out. One thing I've learned through this whole stupid process is that if you aren't actively managing your own care, you can really screw things up as you tend to your other medical needs. I have to inform each and every other dr I see, from my plastic to my podiatrist, of what is going on with me. I tend to forget what I said to the person I last spoke with, needless to say, having to regurgitate my frickin cancer story to each and every medical professional I come in contact with probably gets skewed a bit in the retelling. Do I think CTCA will cure my cancer - I don't know. But I'm willing to let them try, and I hate that I'm feeling punished for doing that. I realize that I am responsible for feeling this way - no one can MAKE me feel anything, they can certainly influence, but they can't MAKE me feel anything - that is my choice. I know another conversation is in order for she and I - I just need to get my emotions in check, and come at it from the cleanest place in my heart. That's all I can ask of myself. I need to do what is right for me and my family as I continue to fight this stupid thing, they are the reason I continue to move in a direction of healing. I'm not giving up on hope, and I have to say, CTCA makes me feel hopeful as well - which doesn't suck either.

So on a completely different note, while we were there, PJ and I were commenting on how the clientele at CTCA was so different than what we were accustomed to - they don't take Medicare, so there weren't hardly any older people. Then we get into the elevator with this Asian couple and as we say hello, we see they clearly don't speak English real well. So, the proverbial smile and nod commence. Then, this gentleman gets on by himself, another proverbial smile and nod. So there we all stand in the elevator, this man, then PJ and I, then the Asian couple. The man's cell phone goes off and his ring tone, no lie, is the Asian tune that comes right at the beginning of the song 'I'm Turning Japanese' - do you know what little tune I'm talking about? DET DET DET DET DET - DET - DET - DET - DET. There PJ and I stand, I raise my eyebrows as if to say "wow - how ironic is THAT" and slowly look at the Asian couple to see if they react to this situation. The proverbial smile and nod. PJ and and I could hardly contain our laughter. He kept telling me to be quiet until we got outside. Frickin hilarious. The man couldn't answer his phone fast enough - who would have ever thought, in Goodyear Arizona, you'd be in an elevator with an Asian couple when you picked that ring tone. Hmmpf.

Well, off we go into our weekend, Madeline has a soccer game tomorrow and she loves it when her Dad takes her to these. Definitely a Dad/Madeline thing, which his so awesome. Ginger and I get to stay home and nest - we like to do that. Ginger has taken to grabbing my face and pulling me into hug and kiss her lately, it is the sweetest thing ever. Good vibes and prayers for Monday morning, I'll get the call that we are good to go and start figuring out how to make this work. Fall break is coming up and I think I'll try to schedule this over that so at least it wouldn't involve carting my kids around.

Thank you all for your prayers, your good wishes, all that good stuff. I appreciate it all, so much, especially as I enter into this new phase of treatment to abolish this tumor hopefully and prayerfully once and for all. Have a great weekend.

Dina