I know I'm downright horrible at keeping you all posted, and at documenting everything that's been going on, but life certainly does get busy sometimes -- or all the time! :) This blog finds me well and back at work as of a little over a week ago.
Time certainly did fly while I was off, but I feel like I accomplished so many things that I had been wanting to do: I started growing my own wheatgrass, I juiced daily, I attended meditation classes and other relaxation classes, and I slept 8 hrs a night like I should be all the time. I also had the opportunity to begin reading (though I haven't finished!) some great books on how to cope with things. One is called "The Mindful Way through Depression" -- though it is NOT all about depression -- but rather coping through mindfulness practice with some of the most difficult and sad parts of life. The book comes with a CD that has guided meditations on it, and I really liked it when I started reading it, BUT I haven't read it in weeks now! I'm such a slacker on that end. I was also reading the "The Tibetan Book of Living and Dying" which I found incredibly interesting as well! I really do need to dedicate a little more time to reading, as it is definitely one of my favorite hobbies.
Towards the end of my time off a few rather important things happened: (1) Jeff took his MA bar exam -- we'll find out in May if he's passed! (2) I took the MTEL (Mass Teaching Licensure test) to teach Spanish in High School and (3) Jeff and I went on vacation for 1 week after we finished both of our tests -- oh yes and there was a high volume cancer week in there too.
I'm really excited at the prospect of being able to teach Spanish in highschool and really think I would love it. I'll find out on April 10th if I've passed the exam and have started finally applying to jobs as of today! So if any of you all out there know anyone who's looking for a highschool Spanish teacher in MA, please let me know! Being in Spain was amazing as well, Jeff and I had a really great time visiting all of my old haunts and favorite restaurants. And he took initiative as well and actually looked up a couple of new things, so I got to see the inside of the Royal Palace -- which I've never seen, and went to a very famous Tablao in Madrid to see Flamenco! I'm going to try and post a link to the slideshow he created, with commentary, of some of our pictures :) He's quite funny in them. Hmm ok I'm not tech smart enough to figure it out, but if you want to see them email me! Otherwise here is one of the best ones he took, it's in Toledo:
Hopefully you all can see that! All right well here's the link anyways and maybe it will work, click here.
So anyways, Spain was great, there were some crazy stories involved with us getting there and back, but I'll save those for another day. :) Unfortunately coming back was not as fun as we both had to go back to work the next day.
But let me skip back a little and update everyone on my scans and whatnot. I have officially finished my Sutent -- actually my last day was Monday, February 23rd. I wonder if I'll remember that for a long time, or if I'll forget? Anyways, I finished on Monday and had had my scans the Thursday before on Feb. 19th down in Philly this time at Center City Imaging, part of Jefferson Hospital. Since I was down in DE Jeff came with me all by himself this time around, and though I was a little aprehensive at first about not having a huge team of people with me, it turned out just fine :). Jeff and I acted as our usual foolish selves as we waited almost 2 hours for me to go in for my MRI ( not that that added to the anxiety or anything!!) We played tic-tac-toe, hangman, and some ridiculous imaginary game where we drew on a sheet of paper and the next person had to make the previous scene into a new scene but using some of the same items in it. It was very odd, but very funny :) We also sat at the kiddie table while doing all of this.
Anyways, we finally got in and Jeff was allowed to come into the MRI room with me, they told him that he could talk to me but that I wasn't allowed to talk back (b/c of the various breathing techniques you have to employ) -- I was suprised he didn't take more advantage of that! :) hehe. I also wore my "lucky" green St. Paddy's day socks my mom had given me since the big Irish Festival day was approaching. Scan went as normal and eventually when we got out we went out to dinner at the Cheesecake Factory -- they have very yummy salads and very yummy sangria. :)
Well in order to not have an anxiety-attack from looking at my scan report this time around we devised a new plan. On Monday morning on our way driving up to MA for Jeff to take his bar, we stopped at the Imaging Center and I signed to get the report. We had a pre-addressed, pre-stamped envelope already in hand and as soon as the lady handed the report over it didn't even touch my fingers! Jeff grabbed it, stuffed it in the envelope, and put it in the mailbox. The plan was to send it to our address in DE and then when we arrived back we would get it from the mail on our way to the Dr. appt's on Friday morning and not open it until about 1 hr before the appt with Dr. Sato. This way we figured I wouldn't feel like I was trying to read his face, and I wouldn't have tons of time to freak out if I thought something was wrong.
.... the plan worked - sort of! We arrived at the ocular oncologists bright and early 7:00am I think and while I was checking in my mom and Jeff (who was the holder of the envelope at this point) went downstairs to get coffee while I waited to be taken in. A few minutes later they came back up and my mom came and said "Everything's fine, I had to look" :) And she wonders why I think she won't be able to keep it a secret when Jeff asks my parents for permission to marry me... lady can't hide a thing! :) hehehe (don't be offended mom, it's not always a bad thing!) So I read it and breathed a little sigh of relief, though I was quite irritated that the report read that there had been no priors for comparison when I had handed the technician all 5 of my previous scans! Literally you can't even PHYSICALLY hand something over to people and expect them to get it, it baffles me.
Anyways, the rest of the eye appt. went pretty well. Turns out the fluid in my eye had dissipated all on its own and so I did not need to have the fluid removed with a nasty long needle into my eye. Unfortunately, that meant that the vision I had was pretty much here to stay. So I have limited "motion" vision in my left eye these days, but only when there is light. When it's dark I'm 100% blind in that eye --- but don't tell the DMV! Also, my tumor had shrunk a little bit more, though I'm still so confused on that end b/c I still have issues with the measurement that was taken the last time I'm there. So I've decided that I'm going to call it 1.8mm of shrinkage over the year and just live with it. I'm hoping when I go back in another 6 months that it doesn't shrink anymore and just remains stable for life, or maybe continues to very very very (like 0.1mm per 6 months) shrink. I also don't have any signs of other major damage to my eye, no internal hemorraging in the eye tissue, and my eye pressures were both about the same (13 in my bad eye and 10 in my other) -- they watch those to check for radiation induced glaucoma -- which my friend just had to have her eye removed for!
Then it was off to Dr. Sato's office. I think yet again I was his last appt of the day and I finally got to meet his PA Debbie, which was good. I said hi to June my little nurse buddy there at Kimmel and then Dr. Sato came along. He walks in and says "Well there's no bad news", of course we'd already known the report was fine, but the poor guy looked run down like you wouldn't believe! I think he may have just had to have given someone some bad news, hence his slightly more sad than usual self. There were a couple of things that came up, one was I had fluid in my lungs, and I had recently gotten over a bad cold, so I thought it was related to that, and the other was that I found out that I have an aberrant hepatic common artery (one of the arteries that leads to the liver is abnormal, though apparently fairly common). I'm surprised it hadn't been pick up before, but that's o.k. I did my typical inquisition of questions and we talked about my next steps. Up next I believe will be immunotherapy with GM-CSF an immune-system stimulating drug. It's something I would inject into myself daily and would need to be followed on a similar schedule to that of when I was taking Sutent. Side-effects are minimal if at all, though again there is no real PROOF that it will do anything. I'm hoping however that it will boost my immune system and kick it into gear, especially after having the Sutent slowly trying to take down my immune system. I should be beginning that fairly soon.
At the moment I am in the middle of a 9 day colon cleanse -- fun fun! I did one last year as well right before I started my chemo. Of course all done under the supervision of my holistic MD. It involved a 5 day liquids-only fast which I'm on day 3 of and feeling pretty darn good :) The fasting includes a very fiber dense holistic mix of things like ginger root, physullum husks, apple pectin, and a few other things. I have it every 3 hours and it more than satiates my hunger. Although I am already planning what my meals will be on Friday -- the day I break fast. I think this is a good period for me though to try and reset my "food" clock if you know what I mean. I do decent during the day with my raw foods when I'm at work or by myself, but have a very difficult time when out with friends, family, or Jeff. This is something I'm hoping to improve and by taking a few days break I think I may be able to get rid of some of my typical carb cravings (white bread from NYAJ and Bertuccis, and my favorite rice -- my two biggest weaknesses). Day 3 is almost over and I'm feeling pretty good about it. It's becoming a good exercise in will power as well b/c I tend to reach for food when I'm feeling frustrated, upset, overwhelmed, bored, happy, sad....hmm pretty much any emotion!
The end of this whole long story is that I am not due back for more scans until May 21st and that I am now "officially" back at work trying to stick it out here and do some beneficial things for this company before I hopefully can find my way out into a more fulfilling position as a teacher!
I hope this post finds everyone well and happy and I thank everyone again for the continued support, love, well wishes, positive thinking, and prayers as always. There can never be enough and I am always grateful to have so many people caring for me all the time.
Love,
Carissa
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