This is the first weekend in I don’t know how long that I have wanted to end so it would be Monday.
Monday at 1:30am we are scheduled to see another gyn onc. We saw someone Thursday at a local office affiliated with a great hospital in Seattle. I had high hopes. My hopes were a bit dashed by the fact that the MD was 45 min late for the appointment (despite the fact that we were his first appointment of the day), that he didn’t introuduce himself to me, and that he was not AT ALL gentle when examining mom in an area us women like to have treated gently. He was also rushed throughout the consultation, the office didn’t have a copy of the ultrasound report they needed (despite the fact that I had talked to the RN the week before to make sure they would get the report from the right place), and he didn’t really explain the surgery at all and said this was the only appointment we would have with him pre-op. He did seem like a smart guy and I got the feeling he would be a capable surgon.
Anyway we are hoping to have a more patient centered experience tomorrow. The place we are going to is a large clinic affiliated with some of the best hospitals in the area. They have a patient coordinator who has been great at answering my questions via email (LOVE THAT!) and they already for sure have the ultrasound report AND the actual films for viewing by their team (impressive compared to the disorganization and just looking at the report at the other doc). Plus when mom went there for her CT scan on Friday they gave her a heated blanket before and after and cookies and juice when she was done!
So doctor decisions aside I am going NUTS after hearing about all of the potential complications of surgery and the different types of cancer. I am a mess worrying that something will happen to her during surgery mostly. I was a mess about the prognosis related to the different cancers but mostly now I am freaking out about the surgery thing. It feels terrifying to know that she could go into surgery basically feeling fine and then the unspeakable happen. I am trying to remind myself that most women live through hysterectomy surgery – but some moments it feels difficult.
If you are reading this send some goot thoughts our way for a clear CT scan report and a positive Dr. appointment tomorrow ok?
A week post finding out about the C word and not much has changed…. Sure I am a bit less freaked out – but maybe that varies by the minute you catch me at. I can be a sobbing snotty mess one moment and relatively ok the next. My body is definately telling me I am stressed out though (duh!) – manifesting mostly in a SUPER sore neck. Yes Cancer is a Pain in the NECK! I tried to relax some last night at Hothouse but what I really needed was a massage and the massage therapist for the evening was out sick. :( Right now my shoulders aren’t quite up to my ears anymore – but it is still a bit of a harrowing event to try to change into a lane to the right of me on the freeway as my head doesn’t really want to turn that way. Hopefully it will continue to work it’s way out over the next few days.
What I have been noticing lately is how much more people’s stupidity has been pissing me off and/or upsetting me. I am either quick to cry when someone is insensitive – or, if I feel like they are out of line I am quick to tell them so. I don’t know that this is an awful thing – but I do know that I need to make sure to not express these thoughts in too harsh of a manner.
I also have little tolerance for people who won’t step up to the plate in a health crisis like this. There are some, who will remain nameless, that aren’t taking up the slack at the moment for Mom. She has tended to be the caretaker of everyone and while I understand it’s hard for people to shift roles there are times that this is vital. Right now she needs more help coordinating things, getting rides places, having extra ears at doctors appointments, etc and in the future I know she will at least need more temporary help around the house, maybe running errands, doing laundry etc. Not everyone seems to get this. And this lack of understanding by certian people is making me jump into protective mode. NO WAY is someone gonna take advantage of MY Mamma – ESPECIALLY when she is sick or needing help. I am not quite sure how to get people to realize this yet… but my support system is helping me figure it out. I am starting to have “evil” thoughts about kidnapping my mom for a weekend and taking her to relax at a spa or something just to have some time away from taking care of others AND so that people might realize just how much she does do.
This is all rather overwhelming. Mom went to the doc today to get a test done (where they aren’t sure they got a good enough sample, so they may have no more info when we go in next Thurs) and was sure she heard the PA say that she might not have cancer. Later I had to call the MD office to confirm a test they had scheduled (that doesn’t even need to get done because she already had it done but they weren’t on the ball with that) and they told me that there was no reason the PA should have given her any indication she didn’t have it. For a moment when Mom told me that I felt relief – I knew she wasn’t correct as we have already had a test come back saying it is cancer – but still I was relieved – wishing this could all be a big mistake. That maybe just like that we would go in on Thursday and they would say they had it wrong. Everything is fine. Or it’s just a fibroid tumor that needs to be removed and all will be well. It’s almost worse to have had a moment of relief and then be crashed back to reality. Now I just feel so. sad.
So I just found out yesterday that my mom has cancer. The C word. Blah. I am torn between wanting to write about this and wanting to keep it private – but right now feel like I might as well put my experiences out there and if I decide to delete or password protect later I can.
Here’s the deal – she went in for her three year pap test (yup now the recommendations are that if you are over 30 and have had 3 consecutive years of clean tests you can wait 2-3 years between paps – F-ing insurance is what I say – don’t listen to those recommendations and go ANNUALLY!) and they found Adenocarcinoma in the results of the test. An ultrasound then discovered a mass that is hopefully “just” endometrial or cervical cancer. We found this out Tue and there is an MD appointment set up for two THURSDAYS from now… 10 days! Needless to say I freaked out.
Long story shortish – I pulled myself together – called the specialist’s office and managed to get her in for testing tomorrow so at least we will have some more results when we go to the MD in 8 days. Now I am driving myself nuts by trying to decide if she should go to the clinic where she was referred for treatment (looks nice – has a board certified gyn oncologist) or the mega cancer care clinic locally that is NCI affiliated (has bazillions of programs and support for patients – including yoga and a knitting group, plus a generally good reputation in town). I guess it’s always good to get a second opinion and through that we can decide what feels like the best fit. I’ve been searching the Internet high and low for some guidance regarding one versus the other – but just can’t find anything.
Thankfully friends have been wonderfully supportive – not surprisingly so as I know I have fab friends! The boyfriend has been great (his work too in knowing that he will have to be away to help with some things) and hopefully my work will be understanding too.
My eyes are a bit less swollen tonight then they were last night… but I am still fighting the urge to spin down into worry.
Oh yah – and thanks Cali for helping me to keep in mind that it helps to be nice and polite when you call the doc’s office to try to get them to get you a better appointment :) Not sure I would have been as gentle without her example!
Think positive thoughts for us ok?
First of all the LYS’s that are the closest to me totally suck. They will remain nameless – but they aren’t in the city limits of Seattle. Everytime I have gone they aren’t very helpful or they are downright rude. Today my experience was ok – a not too helpful employee who had a teeny bit of knowledge – but wasn’t useful at.all in showing me where things were in a store that I am not familiar with.
Secondly – I had someone bag on me for a vacation I am going to be taking – it’s a long story but suffice to say I now have a ticket to Vegas and a hotel that I can’t cancel – and six days alone there before my boyfriend arrives. While this might be a great vacation for some – six days alone- it isn’t my idea of fun. I like to have someone to talk to and have dinner with and maybe catch a show. I’d be fine alone for a few days – but SIX is a bit much. So I’ve been trying to find someone to go that I’d enjoy spending some time with. Free hotel and free airfare. Hell I will even pay for some meals. But I can’t find someone to go!!!! My nearest and dearest either have no childcare, are the child care, have no time off work, finals at school, are trying to make babies, or are alredy on vacation those days – How the hell is it so complicated to find someone to go on a free trip!!!!!
Thus Grrr. Send me good vibes that someone can go.