the road to recovery (this makes me sound like a recovering alcoholic)

I filled out some paperwork a few weeks go to get into the survivorship program.  It is at the Montcrief Cancer Institute.  It is a brand spanking new, beautiful building just a couple of blocks from the Cancer Center that I go to for treatment.  It is really wonderful- all services are available to everyone that has had cancer- regardless of where they were treated.  The survivorship program is for people that have completed treatment.  I am still doing herceptin, but it is not technically chemo, and I am done with raditation now as well.  They have a lot of services available- yoga, counseling, nutrition.  The 2 that I am most excited about are excercise and nutrition.  Each person gets 12 free sessions with a personal trainer.  Since I am having surgery in June, I would really like to start getting more fit now- I would love for my legs to look good again- that way I won't have a nice flat stomach but be flabby everywhere else!  I am also looking forward to meeting with a nutritionist.  It is so overwhelming, trying to figure out what to eat/what not to eat.  I am definately trying to eat more vegetarian meals, but I have also read some studies that say that consuming dairy can really reduce my survival rate.  Then there is the issue with sugar being bad for cancer too.  Ahhhh!  As you can see, it is very overwhelming! 
I had an appointment yesterday at Montcrief.  I thought I would be meeting with the trainer, but instead I had to meet with an oncology nurse and a social worker.  The nurse just talked to me about the various things that the survivorship program offered, and she also invited me to be part of a study about exercise and diet.  It is easy and really just consists of filling out some surveys for a year.  This will make for a total of 3 clinical studies/trials that I am a part of currently.  I feel like I may grow a tail soon because I am becoming a lab rat.  
After talking to her, I had to meet with the social worker.  She was very impressed with the way I am dealing with everything, and that I appear to be so positive.  We talked a bit about my diagnosis, and I admitted that I am really not that concerned with THIS time.  I think that I really do have cancer beat this time.  It's NEXT time that I worry about.  And really, I am quite convinced that there will be a next time.  I was 37 when diagnosed.  That means I have an awful lot of years ahead of me- so I am pretty sure it will happen agian.  I am worried about catching it in time, worried about where it will show up, worried about whether next time will do me in.  Really- those worries are all normal.  One of the biggest side effects of cancer is worry.  Worry is like an invisible tumor that eats at your brain, making you always wonder about the future and how this will all play out.   The only other issue that I have is regarding intimacy.  I haven't really talked about it with anyone, but I did discuss it a bit with Pam, the social worker.  My problem is that I have to wear clothes when my husband and I are intimate.  It is strange because I can see myself naked and I am okay with it.  Jim can see me, and that is okay- but I guess I just don't want to look down and think 'cancer' when other things are going on.  It isn't sexy or pretty.  It is ugly and that part of me is terribly deformed.  That is the one time that I just can't 'deal'  So I wear clothes.   I told Pam that I really wasn't that interested in working though it right now.  I am having surgery in June and my entire body will change all over again.  I am hoping I can be happy with it then.  We agreed that if I still have the same issues after surgery that I will come in and talk to a psychologist about it.   So there.  Now you know all my secrets and fears.  Well, the cancer related ones anyway.

still chugging along, and so are my aches and pains.

I have been so busy the last month!  I have been meaning to write but I just never seem to have the time, or if I do, I am too tired.  Things are getting better!  My radiation burns are gone, I have a tan square on my chest, but it looks pretty good!  The bad news is that I do have lymphedema on my underarm area- it is called truncal lymphedema.  I also have some really terrible cording in my right arm.  It is caused by scar tissue and quite literally looks like a cord that starts under my arm and goes to my wrist.  If I stretch out my arm, you can see the cord.  It is really pretty gross.   I have been seeing a massage therapist weekly, and also a lymphedema therapist a few times a week.  The lymphedema is getting much better, and the cording is perhaps getting better- I am not sure about that yet.  It is very frustrating to continue to have things go wrong.  My energy levels are starting to get better, but I find I still tire quickly.  I am ready to do normal things but my body is not as ready as my mind, apparently.    In addition to the other issues that I have already mentioned, I still have terrible neuropathy in my feet, and really achey knees.  The neuropathy is strange.  It isn't numbness, it is pain- when I get up in the middle of the night or first thing in the morning, or even if I have my feet up and watch television for a while.  Once I stand up the pain is so terrible.  The way I can best describe it is that it feels like I am walking on shards of broken glass- that are on fire!  Once I walk around for a bit it goes away, but every time I first get up, it is just terrible.  My knees- well, they feel like 80 year old knees.  Every time I get up or sit down.  I am taking some arthritis medications but that is not helping.  My massage therapist is trying to help me with my knees and feet also- I really hope it works!  One other thing that I find frustrating is that I still have so many appointments.  I have had 4 appointments this week, just for myself!  It is so hard to know how long some appointments will take so some I have to just schedule one a day- but then my whole day is blown.  I am really trying to make an effort to double up when I can.  It makes the days with multiple appointments very rushed and stressful but it is worth it to get a day off!

This is not my arm because it is too hard to take a picture of myself like this- but basically that is what it looks like- a cord going right down the lenght of my arm.  And if you think it looks uncomfortable, you would be right!

I signed up the family to go on a camping trip with our church.  I am really quite nervous about going.  Nervous about the pain.  We have an inflatable mattress, but I don't really know if that will be good enough.  Thank goodness I have unisom and melatonin!
Now on to hair.  Let me just say that it really irks me when people say wow, your hair is really growing now, look at it, it's taking off!  NO!  it isn't!  It is NOT taking off.  These pictures are taken 4 MONTHS after chemo ended.  not 4 weeks- 4 MONTHS!  I have 1/4 inch of hair.  That's it!  I can not even brush it yet.  Well, I can, and do occastionally- just to see if it makes a difference, but it doesn't even move my hair because it is still too short.  I have been thinking of getting a Marines tshirt, to go with my marine haircut!  Oh- except that it isn't a cut at all!!!!   Okay, now that i have got my hair complaints out in the open, I will say that I am very glad to have hair finally, small as it might be.  If it is a warm day outside, I don't even wear a hat anymore.  It is so nice to be able to go out without covering my head!  yeah! 
Something funny happened today in the chemo room when I was there for my infusion.  Usually I have people not recognise me because I don't have my long bright red hair.  I understand it, but it really hurts my feelings every time it happens.  However, today at chemo on of the nurses didn't recognise be because I DO have hair! hahahahaha!  That was a really good feeling :)    I always wonder how the nurses do such a good job remembering people.  They look completely different from the first time they come in with hair, to the next time 3 weeks later- bald.  It changes a persons look so much!  I suppose normally they don't get to see many people when their hair starts actually growing back in because by then they stop coming to get chemo.