slaintekt's Cancer Blog
November 12, 2009
I am so, so very glad I didn’t give up.
I went for an appointment with a fourth gynecologist/oncologist yesterday and she was GREAT! I couldn’t have asked for a kinder, more compassionate doctor to work with. More importantly, she took the time to really listen to me – I wasn’t just another cancerous body coming in to be examined. What an incredible relief. At the end of our appointment, I asked her if I could transfer and become her patient permanently, to which she responded “I would love to work with you!” – and after keeping my emotions in that whole time, I exhaled and let some tears come out. I am just so happy to have finally found someone I feel completely comfortable with and someone who really takes into consideration my concerns and feelings.
I had another CA-125 test done, and my level is now at 17.1 (down from 23 in September and 67 in August). Yes! Of course it’ll be more telling when I get the results from my next CT scan – which I’ll have next Friday afternoon. Not looking forward to drinking that prep but anxious to get the results. If you have any ideas on anything I can do to make drinking that nasty stuff any more manageable, I’m all ears! The last time I had to drink it, I almost puked after the second sip.
I just can’t believe it – I’m so grateful for people like my new doctor in my life.
October 24, 2009
I took sort of a break from this blog and from reading others’ for a bit – I think I had just become completely obsessed with my situation and once I finally got to sigh a little bit of relief (with my last CA-125 results), I let it go…just for a moment. I think now I’ve found a bit of a better balance.
I also think I just got tired (already! I know, I have to chuckle a bit at myself for that) of dealing with the different doctors. I went for that third opinion and it just solidified my decision not to go back to my second doctor. I haven’t made that known yet – I need to either find a fourth doctor (not for a fourth opinion, but to find someone with whom I can see myself working with for…well forever) or see if I can stick with the third one. I think I got spoiled in dealing with my original gyn/onc back in MI - after all, he was the one who did my surgery and took care of me for the week I was in the hospital (as well as afterward), and so a bond developed.
It’s hard, though – if I didn’t live in IL, I would have stayed in his care, which would have meant right now I’d be going through chemo. And I would have never questioned it – I completely trusted him. Funny how things work out, because since I had to come back to IL after I recovered from surgery and returned to work, I unexpectedly got a second opinion from the gyn/onc I transferred to here. Which led to me getting my third opinion…which, after the 2nd and 3rd opinion agreed, as well as two different tumor boards… it became too much for me to ignore.
The ultimate decision I made was to go with their recommendation of NO chemo – and I would have never expected such an otherwise seemingly no-brainer (who WANTS chemo when other docs are telling you it’s not a good idea?) would be as incredibly emotionally wrenching as it has been for me. It is in my personality to stand up for myself and to fight – so to ultimately decide to take the other doctors’ advice to not go ahead with chemo felt like throwing in the towel to me. I wanted to do everything I could to increase my chances of survival, and I thought that by not taking the chance on chemo (albeit a small chance, as I was told by all docs I had a very small chance it’d “work”) – regardless of its risks – I was doing myself a disservice.
But that second opinion turned my world upside-down. Then the tumor board really had me second-guessing. Then the third opinion poked more holes…and the second tumor board? It became too much to ignore, and at some point I had to concede that perhaps my flurry of internet and library research wasn’t quite a match for so many medical professionals’ expertise.
But what about my first doctor? Was he being overly cautious or reckless by insisting on chemo? I don’t know and I guess I’ll never know. And I can’t say I feel 100% confident in my decision NOT to have chemo – but at some point I’m going to have to let all of this GO. I know it’s natural to think about the “what-ifs” but I need to remind myself not to dwell on it – I’ve made my decision and I have to live with that, whatever may happen. One thing I do know, however, is that should I need major surgery again, I will not hesitate in going back to my first doctor because I do believe I received the best care; and besides, my family will be there to take care of me.
I am blessed.
Since my last doctor appointment (with #3) and my last CA-125 results (23; now I’m anxious for another one – never in my life did I think I’d look forward to blood tests!), I allowed myself to take a little break from all of this. Just for a moment, I told myself. But in the busyness that is my work I’ve let a month pass and know I need to get back on track. I was supposed to go back to doctor #2 this month, but never scheduled an appointment, hopeful that I would either like #3 and stay with her, or find another doc. I don’t know why I’ve been dragging my feet so much – perhaps it’s dealing with all the paperwork for a fourth time, perhaps it’s having to tell my second doc I don’t want to be his patient anymore, perhaps it’s going through the emotional ordeal of trying to find someone with whom I can really work with. I keep “meaning” to call and yet somehow I manage to keep “forgetting”. It’s frustrating.
I think I’m going to look up doctor #4’s number right now and put it in my phone so I no longer have excuses…
pazWow you have a lot going on. Four doctors is a lot to deal with! Well three doctors is a lot to deal with but if you need a fourth doctor go for it. I had the same thing you had but my doctor took care of it so I am very lucky and I did not need any chemo. He nipped it real qick should I say is all I can say. But now I have brain cancer and have had two brain surgeries so I still have tumor in my head. Not much to say there. However I am glad that your grade is only a one and you are going to be ok… Just keep your head up and keep smiling… I am from IL which part of IL are you from?? I am from Chicago.. I love Chicago…
Posted on hi, kt. i feel sorry for you having conflicting recommendations… that must have made it so darn difficult for you to decide what to do. and especially since all the other docs had different advice than your favorite one. as you said (and did) you just have to weigh all the facts and go with what you think is best. that is all anyone can do. i wish you the very best and will be praying for you. keep the faith. debby
Thanks for your support - 
hi, kt. you sound so upbeat. i am happy that you have found a doctor that you clicked with. that makes a huge difference. and your ca-125 is coming down….YEA! i hope everything keeps working well for you and that your scan next week turns out to be just fine. i will be praying for you. keep the faith. debby
KT:
So glad you’ve found a doctor that is a good fit for you! That is really the icing on the cake so to speak…it will make this trial so much easier to do when you have someone that you feel you can really trust. Good for you, continuing to search for her.
As for the barium “smoothy” I’ve had more ct scans than I can count and yuck… but these are the things that make it more bearable for me. First of all, can you get it the day before the scan and drink it at home? Some places let you do that with rules on how much/when to drink before coming in for the scan..that way you don’t have to sit there in the office/hospital for 2 hours. Second, make it really cold..the colder the better, don’t guzzle but sip. And finally, a straw is a must.
Some places (MDA) make you drink two of those suckers. I also have tried all of the so called flavors and they all suck…the most tolerable are orange and apple for me. But everyone is different.
Keep us updated on your progress. Best of luck.
Teresa
KT—
I like the very berry flavored contrast the best, however, last time banana was the flavor of the day—yuk! Teresa’s right—chill it down and it makes it a little more tolerable. Glad your number is going down—keep that going! Best of luck on your upcoming tests.
Martha
Hi, I am so excited you have now found a Dr. you can feel confortable with and that the Dr is Kind and listens well to you. That is a True Blessing.
I just took a cat scan a few weeks ago. You can add apple juice or orange juice to the prep and
it my help you get it down easier. I will be
anxious to hear that your cat scan came out great. I will pray for you. Keep the faith.
your friend, blondiedot1
Thanks to all of you so much for your continued support! I can’t express how much I appreciate all of your support and positive comments – it really feels good to know I have people who can truly empathize. ¡Gracias! :)
it’s so inportant to have a doctor you can trust and where you have a good feeling about.. i’m so blessed with mine. it’s already a stressfull time and situation and every kind of help or relieve can help you in this difficult time.. sorry for some gramar faults but i’m dutch hihi.. trying to do my best
greetings
debralee
How wonderful, KT, that you have found a wonderful gyne/oncologist! I am working on my third one, myself….I hope to find such an ideal situation as you have with yours!
My only recommendation for drinking contrast is to make it ice-cold and CHUG, CHUG, CHUG! I’m right there with you….the first time I drank that stuff, I threw it up almost immediately!
Take care! :)