Saturday, January 9, 2010

Hazy Days

I spent the last week trying to get back into a "normal" routine, but it has proven to be difficult.  I still don't have total mobility in both arms; the left is mostly back to normal, but the right could use lots more work/exercise to get back to normal.  I also don't feel comfortable lifting Annabel yet, so we haven't been out on any "solo" missions.  I have a little cabin fever and I think I'd be okay out with her alone, but if she had a tantrum or something, I worry that I wouldn't be able to wrangle her.  She is a good girl most of the time, but she is 2 after all! 

On Tuesday, I went back to the plastic surgeon for another fill in my tissue expanders.  He was pleased with the way my incisions are healing and gave me 60ccs in each side.  I took a muscle relaxer and a pain pill prior to my appointment and Scott's Mom was here to watch Annabel.  That fill really wasn't too bad.  I was in pain, but nothing like the two fills prior.  When I got home, I laid down and fell asleep for 3 hours!  It was a good thing that Mimi was here.  My plastic surgeon suggested that we try to do two fills per week until we decide that I am big enough (and then one more after that).  I made an appointment for Friday.  I only needed pain medicine on Tuesday to get through that fill.  I took Advil on Wednesday and was still in a little pain, but it was definitely manageable. 

On Friday, my appointment was at 8am.  Mimi had plans on Friday, so we took Annabel with us to the doctor and she and Scott waited for me in the lobby (and then in the car).  Based on my experience from Tuesday, I was sure that I could handle spending the day with Annabel by myself.  WRONG.  My plastic surgeon is concerned that my left expander doesn't look big enough to have as much saline as he has put into it.  He told me that he wants me to keep an eye on it and he and his nurse will look when I go back on Monday.  If he thinks that it isn't holding fluid, he said that we are going to have to have a very unpleasant conversation....meaning that I will have to have surgery to replace it.  I am hoping that he is wrong and that it is just the difference in the way the sides are filling up, but now I'm paranoid that it does have a slow leak (which he said was pretty uncommon).  He also gave me double the amount for my fill.  OWWWWWWWWWW.  I thought I was a rock star since I recovered so quickly from the last one.  I knew right away that I was going to be in a lot of pain.  Scott had meetings scheduled all day Friday and has missed enough work lately, so I knew I was going to have to tough it out.  I was loaded up on pain medicine and counteracted it with an extra large Dunkin Donuts coffee.  Annabel got out her art box and we colored together and she was very helpful and agreeable, thankfully!  I was really in a lot of pain and Scott's mom and dad ended up coming up to get Annabel and take her home with them.  After she left, I got in bed and stayed there all night until this afternoon.  It hurts to move!  Bad!  I ended up missing Mario's birthday dinner and fun last night because I knew I would be in excruciating pain if I did anything but lay very still.  Again, I hate to complain so much, but it really does hurt.  Any movement hurts, including breathing.  Seriously, breathing hurts.  The good news is that if everything goes well (no leak), I should only have to have one or two more fills.

This part of my "journey" has been especially difficult.  When I was on chemo, I was too tired and sick to be mad or annoyed.  Now I have a little more energy and I don't deal well with physical pain, so I am really cranky that I can't do more and that I am laid up because of these expanders.  I also don't tolerate pain medication very well, it seems.  I have been drifting in and out of sleep since yesterday and when I'm awake, I get frustrated and annoyed very easily.  I am blaming the medicine because I know that plays a big part in it. 

I have mentioned before that I am doing a clinical trial.  The next phase of the trial is 10 more treatments of Avastin over the next 30 weeks (once every 3 weeks).  Clinical trials have rules about everything and the rules of the trial are that I have to start it no later than 6 weeks after my surgery.  Another rule is that I can't start it until two weeks after my last expansion.  We (my oncologist, me & my plastic surgeon) can't get an answer from the clinical trial nurse as to why I can't have expansions while I am getting the Avastin infusions.  It is one of those "rules" things and as far as the clinical trial goes, that is that!  Anyway, the deadline for me to start back up is the 25th.  I am not sure what will happen with the trial if I have to have surgery to get this tissue expander replaced.  I may be ineligible to continue.  That would definitely make the decision for me.  Avastin is a wonderful drug for cancer patients, but I don't think they know whether it prevents recurrence.  I guess that is why I'm on the clinical trial. 

I hate cancer.  Really.  I have been having a hard time the past few weeks because prior to surgery, I considered that to be a major milestone in my treatment.  And while it was a major milestone, I have so much treatment left to do.  Now that the chemo fog is lifting, I want to do MORE...I want to get Annabel out of the house and around other kids again.  I want to be social again and take some weekend road trips.  Stuff like that, but I don't really have the energy yet. 

Not much else going on here.  It was a wonderful holiday season and I was sad when Scott had to go back to work last Monday.  It was really nice to have him home for most of December!  For the last 20 years, I have had our annual family ski trip to look forward to after the holidays, but we are not going this year.  I will miss it so much, but I know that it would have been hard for us to make it with all of this cancer stuff still going on.  I am sure it will be that much better next year! 

Oh, the picture was taken last week before we went to dinner to celebrate Scott's birthday.  I have been going hatless, but since it's cold out, I wear a hat until I get hot.  I will have to include a hatless picture next time.  My hair is finally growing back! 

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