Monday, March 21, 2011

Neuropathy makes you feel crazy

This post comes because I left my house and went out into the world for a long day and was reminded again of how things are not normal.

This sums up the neuropathy that I have from the chemo that I got. It is funny that the dr didn't tell me I would have this after the chemo was done.

Since I don't go anywhere I can sort live with it since now I am so used to being like this. At home I only walk very little and then can go sit down anytime I like. It is when I go out it hits me, Oh, yeah, I can't walk like everyone else and like I used to. The wheel chair is a blessing and a pain. Great since I can be out without a time limit but bad since I get these looks (I think because I am young and remember I LOOK SO GOOD!) but then I can't go out by myself since I can't push the kind of wheel chair I have really well by myself for long distances (I have the neuropathy in my fingers too but not as bad as my legs/feet).

My neuropathy makes me feel like my shoes are too tight, it makes me feel like things that are not there, it makes me hurt, it makes me feel nothing at all, it makes touching hurt and weird sensations, it makes me question and not trust what I feel or don't feel. It mostly makes me feel crazy. I hate walking slow, I hate walking like a duck and an old person, I hate looking normal and walking weird, I hate the looks, I hate that I don't know when this will and if this will go away. I pray this is what I will have to deal with, I will happily complain about having this. Can this be the only thing I have to deal with, pretty please.

This is just one of the hidden side effects of cancer that people can't see. I have other hidden side effects but would rather not share since they are icky and I do try my best to keep them hidden but it is hard and such an interference with my daily life. People can see and know that after the chemo, after the radiation, after the surgery there is a whole bunch of never ending side effects physically and emotionally that keeps you.

Chemo and radiation and surgery, the gift that keeps on giving except it doesn't always keep the cancer away.

Friday, March 18, 2011

There's always something unexpected!

Can't things ever turn out how you think they will??


Thought I was just going back to the gyn for a follow biopsy-- but it didn't end there! First, she was GREAT! I think she gets where I am coming from. After I told her about the chemo dr appt (thought she should know I wouldn't be getting a CT scan), she got me in RIGHT THEN to another chemo dr! Amazing! But of course it scared the heck out of me since I was not prepared for that at that moment. And I have been dreading trying to find another chemo dr. It is so draining to actually do it and even just the thought of going to another dr appt is really getting to me. Appts and drs are so draining and such a downer on me. I just want a break. But no break. (I have 4 dr appts for the month of April!)

Thankfully, I had my friend with me who is on the short list to sainthood for coming to a super early morning appt and then staying even longer for another unexpected appt all the while with a toddler in tow (who was perfect). Thank you Saint Natalie (and Anna)!

Even though the new chemo dr appt went ok it was very, very stressful for me. The good news is he would give me a ct scan and proper follow up. I also learned that I was discussed at the tumor/cancer board meeting by all the drs, so all the local drs now know what a pain in the *ss I am! LOL The difficult patient that won't just follow along with them. So good to know how much harder it would have been to find a chemo dr if it wasn't for my gyn dr taking it upon herself to get me to see one. Plus, they would know immediately that it was me (even though they don't use names) since who else would have a rare cancer at a young age. Turns out my new chemo dr actually questioned why I was having this "full surgery" and perhaps I could do half the surgery. Nope, they all jumped on him for that comment. Oh, no, you don't do that, she's a T4 tumor!

So here's the big curve ball thrown during the unexpected dr appt and the last thing I was thinking when I went to meet him. His idea is to call the GI drs and ask if they would do half of the surgery. I am thrown for a loop when he says this and thrown into panic mode, and I am still in panic mode whenever I think (write) about it. Just when I thought I had made a decision about surgery now it could be back on the table. I did ask the GI dr if he would do half of the surgery way back when and he told me no but of course it was ME asking, maybe another dr asking is different.

Well, now I am just in an unknown zone waiting for a biopsy result, waiting to hear what the GI dr said about half surgery, wondering what will I do and wondering how I could do it all. And basically feeling like my life is always falling apart and just wanting a break from this all for a little bit. No, a long bit. It stinks just as one of my kids is getting counseling over this stupid cancer thing and the counselor had just reported "I think he is doing ok and now with everything settling down too it will help him", yeah, right, now it could be possibly thrown into more chaos again. My family's world is a mess and stressful and never stopping. I need a break but you can't get a break--something always happens.

Thursday, March 10, 2011

So done

It's been a whole pregnancy since I have been dx with cancer and I feel like a pregnant woman who is at the end of the pregnancy and is ready for it to be over. I am so ready for cancer to be over. I sick of dealing with it. I am so sick of going to the doctors. That always brings me down and back to reality. Around everyone else all seems well, look at all the good test results. You all can be happy about it and rejoice. But I go to the doctor and there is no rejoicing just dread from them. Cancer will never be over unlike a pregnancy that will end with a happy little baby. Cancer never ends and when it does end, it really is the end.

So why the horrible downer of a blog post. Because of the horrible chemo dr appt. Just when I think all is well, I made my decision to not have surgery and planning all the follow up with the gi and gyn and now all that was left is to go to the chemo dr follow up appt and then he re hashes the no surgery decision. He veils it in "it's your choice" in his fakey voice and condescending tone. It's my choice to not have surgery but now I will not get the follow up that any other person would get since I didn't have surgery and that I can't promise him I would have surgery if it comes back. Well, so sorry if I can't promise you something about the future, I don't do that. I just don't get this dr. I would not treat a mom I was helping the way I have been treated. If a mom comes to me and I know she has low milk supply (and she knows it too). She says she wants to increase her supply and nurse her baby. I tell her a,b,c,x,y,z is what she needs to do but she only wants to do a,b,c. I don't belittle her. I tell her why it is important to do it all and the consequences of not doing it all etc but I let her decided what she wants to do and I support her best I can even if it is not what I would do or what I think she should do. It is her decision not mine. She will have to live with that decision. I don't. She knows what she is able to do. I don't tell her to promise me she'll do x,y,z if only doing a,b,c doesn't work. I trust this mom, I respect her, it is her life not mine.

I am sick of it all!

I am down about another mom who has this stupid, stupid cancer. She is starting chemo again. I remember saying give me more chemo in response to I would rather have chemo than surgery. Well, when I heard she was going to have to do more chemo a horrible dread feeling came over me. All those feelings and memories of the chemo came flooding back. I hate that she has to go through this. I hate knowing that might be me too. I just want to have cancer be done but it feels like it never will be. I will always have to deal with this.

I want to "move on" and get back to "normal life". Yeah, right, that can never happen. I am trying to not be down and trying to not think of cancer and what it means but it always comes back to my mind. The worst is the thought of not being here for my kids. I HATE that thought, that is the thing that gets me every time.

Ok, let's at least end this post on good things.

I really am so thankful and happy with how well (say a prayer) things are going with the cancer being in remission right now. So despite my rantings know this. It's just those dang drs who keep bringing me down so it is hard to stay happy.

I am also SO SO SO SO SO amazed that Trooper still has breastmilk from a super fab mom who has continued to provide milk for him. Trooper had been sick twice and I am sure he would have been in the hospital if it wasn't for the milk she has given to him. It kept him hydrated and provided calories when he wasn't eating anything. I just want to say it over and over and over again about what this has meant to me. It has been huge and brings me such peace and comfort.