the roller coaster ride continues

[cat127]

i think i hate the roller coaster part of this the most. i keep thinking about when my sister was first diagnosed, she was in the hospital and our other sister called and she told her the CT results and apparently said right away, do you think kim will come home. and of course i did, i had a bag ready to go in case the news was bad. one of the first things she said to me was "i feel like i'm on a roller coaster" and i told her, well buckle up, because you are on one and it will likely keep coming at us.

well this week, it's back. my sister finished her chemo and radiation a month ago and we had the CT on monday. we were to meet with rad onc right after and he told us he was looking at the scan and it really looked good. i said right away - what about the adrenal gland? he said - unchanged. the back story is, when first diagnosed, there was a 2 cm nodule on the adrenal. no one would biopsy it, MRI was inconclusive, the PET report said the uptake was not indicative of a met. so we moved forward as 3b. the CT before starting radiation said that the adrenal was 1.8 cm and was a met. i said to each of 3 doctors - if the lung tumor shrunk 55%, would 10% in the adrenal really be likely of a met, and can't that just be a measuring error. all 3 agreed with me, with rad onc being very emphatic. med onc said - well if a CT indicated a met, we would do the PET, and the PET said not indicative of a met, so let's go forward aggressively and keep watching. so i was thrilled to hear it was unchanged. and this dr was so psyched by the great response and said he never would have expected her to do so well and he was anxious for us to go back to the surgeon as he felt she was possibly one of the 3b folks that surgery would be warranted.

today we met with med onc and he said, there is something very distressing on your CT report. the adrenal has shrunk again and this seems now to very likely be a met. 2 days of feeling good, then BAM. now i know to expect that, i'm the one who warned her about it. but it still took the wind right out of me. and then as the medical one in the family, i'm very aware that folks are looking to me and following my lead, and i know i've got to portray some optimism.

med onc still wants us to talk to the surgeon. he said that it wouldn't be the first time this surgeon took out a lung lobe and an adrenal gland and that given how well my sister is doing that he still wants us to be agressive. he did look at me at one point and say - you will be at that appt, right? he said to my sister, i know this is now more complicated, which is why i am guessing he wanted to be sure i would be there when she meets the surgeon. i'm working from my sister's even though my workload back home is big, but man i am so glad i'm here to be at these appts.

my sister seems to be handling it well, and i guess they think i am too. but i just want to go somewhere alone and cry. so instead, i'm sitting in her dining room typing to all of you.

she did give us the best laugh of the day, when she called her husband to update him and told him that the dr wants us to go to the surgeon and see if the surgeon will give her a lobotomy. lobectomy, lobotomy, same thing. i told her it was certainly a novel way to treat cancer and bound to get her into the medical journals. she said yeah, i'll still have cancer, but i guess i won't really care. she laughed so hard that at first i wasn't sure if she was actually having a bit of an emotional breakdown. but no, she was just laughing hysterically.

sorry for the length, but i needed an outlet right now and i can't leave here to go call any of my friends. so this seemed like the right place to come to vent, if only electronically

[bunny]

it is so important to get it all off your chest. 'roller coaster' is exactly how I always describe the experience of LC, for the survivor and the caregiver, as well. I'm sorry the news is so mixed for you guys, but hang in there.

xoxo

amie

my husband is Irish, he would especially love your shirts. xo

[Barbb]

Your sister's mis-spoken word was really funny! I bet she felt better after that good laugh session.

I am praying for her and you. It is so great that you are with her. Yesterday the hospice nurse told me that holding back my tears takes alot more energy than letting them fall and asked Rod to give me permission to cry. Of course he said yes, he never indicated it bothered him but it bothered me. So go ahead and cry. She may want to cry too. My sister cried with me on the phone, then my niece and brother in law were here and we cried. We have to get the emotion out.

Thinking of you..

Barb

[fillise]

Be strong for your sister. Come cry with us. You don't need to be strong here.

((((Hugs))))

Susan

[carolhg]

You certainly came to the right place to express your concerns, joys, fears, and worries. Your sister is very Blessed to have you for a sister and with her during such a difficult, confusing and challenging time. I will be praying for all of you.

Carol

[cat127]

we will now always refer to lobectomy as lobotomy and yes, the whole family just cracks up every time we say it.

i decided to call the radiation oncologist and talk to him about why he measured the adrenal unchanged and does his opinion now change after reading the report from the radiologist and what about giving me a CD with the scans and I can have my co-workers look at it and see what they think. i said to the surgeon yesterday, i won't believe anything about this adrenal nodule unless i see a path report and he said "me either". so right now, my sister still has hope that with all the discrepancy that the adrenal is not involved and she is still 3b. and i want her to keep that hope. which was the message i left with rad onc. that i know it will likely not impact treatment modalities but that it makes a difference in how she feels. so if i get the scans and everyone at work agrees that it is a met, well i don't have to share that right now. because hope is a precious thing and i want her to always have it.

or, we give her that lobotomy and it doesn't matter to her anymore.

thank you all for the kind words - and i agree with the hospice nurse, it takes tremendous energy to keep the tears in. luckily i have a 4 hr drive from my sister to my house and i use that to cry, a lot. Lord help the state trooper that ever pulls me over on that ride.

[Don M]

I remember reading a few years ago of one woman who after her disease was controlled with chemo, had the lung surgery and the adrenal removed, going for the cure even though she was stage 4. The only areas that had cancer were her lung and the adrenal gland. I think it was done at Columbia Presbyterian Medical Center. I think Dr. West has remarked on this situation.

http://onctalk.com/bbPress/topic.php?id=375#post-1622

If it were me, I would go for cyberknife to finish off the residual disease so that I could conserve my lung function in case the disease returns. Of course I may be biased about recurrence since I am on my third cancer and may have a 4th.

http://www.cyberknifesupport.org/forum/

Don M

[Maryanne]

Your sister is so lucky to have you by her side. You seem very intelligent and ask the right questions. Let's wait and see what the pathologist has to say.

Please let us know everything. We are always here which I am sure you know by now.

Fingers crossed for better results than what you were first told.

Maryanne

[cat127]

oh i tell my sister all the time how lucky she is to have me. she even introduces me to the drs and other patients as 'this is my little sister slash medical advisor'. i work in oncology so i actually do know a good bit about what i'm talking about.

so the radiation oncologist called me back and couldn't have been nicer. he said that he stands by his original assertion that the nodule is stable and is not a met. he felt so bad that we agonized at all over it and wished i had sought him out last week. he said "do you need me to call your sister and tell her that she shouldn't lose hope". i told him i thought she was doing quite well and that was OK. he offered to burn me a disk of the scans so i can have a copy for myself and see if i can find 10 folks in my office to all look at them and see if we can get 10 who agree. not likely. he said he wouldn't bet the farm on it not being a met, but that i know full well that medicine is often not black or white but gray. but that he sees no reason to not keep being optimistic that everything he could have asked for happened other than this mixed opinion on the adrenal. he said that the radiologist already added an addendum to the report and that he'd tell med onc and the surgeon that he stands by the belief that she's 3b.

seems like such a minor thing, but i know it matters to how she thinks, and in the words of the lance armstrong foundation, attitude is everything.

thank you one and all for letting me vent. i feel a little less like i'm on the roller coaster for now.