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.

http://cancerissofunny.blogspot.com/2010/04/what-does-neuropathy-feel-like.html

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.

There's always something unexpected!

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

Nope!

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.

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.

What a GREAT weekend!

I got the results back from the biopsy--- no cancer was found!!! It is amazing!!! I feel so grateful and blessed, a weight has been lifted off of me and I feel like I can see hope.
Because of the results (and the blood tests and the PET/CT scan and scope) I have decided not to do the surgery. As you know this is still going against what the drs recommend even though all the tests are good. I will have intense monitoring every 8 weeks to check for any reoccurrence. (I have gotten 3 drs--oncologist, gastroenterologist, gyn-- who agreed to follow me even if I don't do surgery.) I have a pelvic ultrasound scheduled for next Wed just to get another baseline so they can compare things as time goes by, just like they will do with the PET/CT scan pictures. And I will have cancer markers (a blood test) the beginning of March.

Also, thank you for your prayers and please continue to pray for me since this cancer has a very high reoccurrence rate and I pray I get time.

That was Friday and then on Saturday I went to my son's gymnastic meet where he did wonderful, of course! He got two 1st places and one second place and 3rd place all around. He also had another personal best score. This was a big and hard meet so this was a good showing.

Also, in an exciting college men's gymnastic meet Saturday night our Iowa Hawks won against a higher ranked team and beat them by a huge margin and posted many high scores. It was an awesome way to end a great weekend of great news!

I feel so great right now, like I can see light and sun. I hope and pray it lasts.
Please continue to pray. Thank you!

Trooper's Milk-breastmilk, since he is not a baby calf :-)

Here is a picture of all the breastmilk I was able to pump in a few weeks time before I had to wean my baby and do chemo treatment for the next 7 months. I remember when I was pumping it took forever to get 2 oz and yet I had a full supply and a baby who was solely on my milk. My baby could get the milk out but not the pump. I remember thinking, at first, wow look at all of this milk that I saved up but then quickly realized it would only last a couple weeks.

As you know I was so blessed to get milk donated for my baby by my friends. I have had one mom who was able to give me a constant supply of milk as she even still feeds her baby. I am SO SO SO THANKFUL for every drop of it! I had thought I would save my milk that I pumped for when I had run out of all the donated milk and my milk would be the last milk he got. I called it his "weaning milk". Well now beyond my wildest expectations I STILL have donated milk for Trooper! It is amazing and such comfort that he has gotten something I could not give him myself but others gave it to him knowing how much it meant to me and for him.

Trooper is now 17 months and still loving and drinking his milk (and of course eating solids). Some might think he is too old or why does he still need it. If I didn't have cancer I would still be nursing him. It is recommended for breastmilk be given by the World Health Organization for at least 2 years (with solids). The benefits of breastmilk don't go away at some certain age. Recently Trooper got sick for 6 days with a high fever, no other symptoms, wasn't sure what was wrong, he was just tired, cranky, didn't eat solid food. That whole time I was so glad we still had breastmilk for him during this. It is easy to digest and provided much needed calories and nutrition since he wasn't eating. Cows milk would have been hard on his system and water wouldn't provide anything except hydration. I felt so comforting to know he had the breastmilk and I am sure that it kept him out of the drs office or hospital because he was still able to drink breastmilk.

So now since I still have donated breastmilk and my milk is getting "older" I will start to use up my milk for Trooper and then go back and use the donated milk since it is "newer".

Of course nothing is ever simple!

Had the scope today, thought I would know for sure if I would do surgery or not based on that. Nope! They did a biopsy, they had said they were not going to do a biopsy. So now I will go and do the pre op set up ALL DAY LONG on Valentine's Day Monday since I will not have the biopsy results back by then.

Valentine's Day will be horrible spending a day at the hospital.

What's happening, at least at this moment

After sitting with this decision more days, I still feel like I am not going to have the surgery. I went back to the local GI dr and he agreed to follow me. So first thing is I will have a scope on Friday to get a base line of where I am. So unless this shows something horrible I sticking with the no surgery decision. This was the first dr visit that I have had that the "d" word wasn't used. He didn't try to talk me into to doing surgery or anything. Maybe it was because of the way I presented myself, who knows. He sounded very interested in doing the scope after seeing the pet scan results and the what the other dr had said about the exam he did. I think he is wondering if it is really that good of results or not.

So anyways the new plan is see chemo dr every 2-3 mths for blood work and scans, see GI dr every 3 mths for exam and 6 mths scopes (not sure totally he will look more into to see how often on scopes), see GYN dr every 2-3 mth for exams.

I really hope the gyn dr will take me and feels comfortable watching for cancer because she was super nice to me and helpful other times (she was the one who helped turn pumpkin), she is also knowledgeable and supportive about other issues that are important to me and I trust her. So the GI dr has talked to her about what is going on with me (I haven't yet) so we will see next week when she is in the office if she says yes.

For now I will stick with my same chemo dr even though we have had some rough patches with him. The GI dr thinks (and others) think he is one of the best in the area.

So after having all this lined up Iowa City GI dr calls to say they need to change the surgery date (it was penciled for Feb 25) to early March. Uh Oh! Deep breath I have to tell him what is going on! I hadn't canceled the pre op set up appts yet since I want to wait till I do the scope and make sure everything looks ok and then I would cancel it. Well, so I let him talk first and then I tell him all of this. And then a pause. And he continues almost if I was going to still have surgery. He then says "Am I nicer, see I didn't make you cry or get upset" "I'm trying a different approach with you. Does it make you want to have surgery more or less now?". I let out a huge laugh! It was too funny! I think the gyn dr must have talked to him. Now I KNOW how much he must want to do my surgery! And plus the gyn dr said the gi dr is so excited to do it. At least, I figure, I am in great hands should I ever do surgery!