Tuesday, January 12, 2010

Another Milestone!

I went to see my plastic surgeon again yesterday.  Because of the pain from my last fill, I was not planning on having another.  I wanted to keep my appointment so that he could take a look at my left side again to determine whether or not I have a slow leak.  There is still some question as to whether or not I do have a leak, so I have a follow-up appointment in two weeks. 

I think I caused a little controversy with my doctors about my clinical trial.  The "rules" say that I can't have any fills while I'm taking the Avastin and that my expansion has to be complete or on hold two weeks before I begin the infusions.  I also have to start back on the Avastin no later than six weeks after my surgery date.  I simply asked WHY I can't have fills after I start the infusions and apparently someone in charge of the trial spoke with my oncologist who then spoke with my plastic surgeon and cleared that matter up.  He told me that my oncologist must have been read the riot act because there were apparently LOTS of reasons why I can't have fills while I'm taking the Avastin.  Not that I care.  Anyway, the point is that yesterday was the LAST day that I could have a fill, so I decided to go ahead and have another despite the fact that I was still in pain from my last one.  He put 60ccs more in each side.  I am glad that I did it.  I think any more would be uncomfortable and though it's hard to gauge what my size will be when I get my implants, I think I'm close to what I want now.  I didn't want to leave without a fill because I was scared of the pain, which is only temporary.  I think I was brave!  So, the milestone is that I am DONE with my fills.

Next up is to get started again with the trial and get started with radiation.  I can do the two concurrently and am scheduled to start the Avastin on January 25th.  My next appointment with the radiation oncologist is on February 4th, but I left a message for him this morning to let him know that my fills are done, so it is likely that he will bump me up so that I can go ahead and get started.  The sooner I start, the sooner I will be finished! 

If you haven't noticed, I am not looking forward to the trial.  The word "infusion" makes me feel queasy now after chemo and although my hair will continue to grow back and there are (allegedly) no side effects with Avastin, I am NOT looking forward to sitting in those chemo chairs again.  It is only once every three weeks, but it is for 30 weeks and I just dread it.  The first treatment will take an hour and a half and then the next after that, an hour and only 30 minutes for the remainder of the study.  They start slowly to make sure that I can tolerate the medicine.  I have already had 5 treatments with my first 5 chemos, so we know that I DID tolerate it well, but that is how they have to start.  Also, there is an end date for the study and I think I missed the window to get all 10 treatments.  As it stands now, I will have 9 treatments and finish up at the end of July.  I have to wait some time after that before I can have surgery, so it will likely be next fall before I can have my reconstructive surgery and hysterectomy.  I also have to wait about 6 months after radiation before I can have reconstruction, so I might as well continue on with the trial since that is not the only thing delaying reconstruction. 

Annabel continues to add new words to her vocabulary and is putting phrases and sentences together.  It is amazing to watch her grow!  And so neat that we get these glimpses of what she is thinking now that she can communicate.  I feel like all of this commotion lately with the holidays and the fills and everything has really thrown our schedule out of whack.  Now that the holidays have passed and my fills are done, I hope that we can get into the swing of a new routine.  She is a good girl and good company, but she is two and has a tantrum every now and then.  I think we both have a little cabin fever and I am looking forward to getting out of the house more often now that I have more energy.  I'm not ready just yet because I still don't have full range of motion in both arms.  My left arm is just about back to normal, but the right is still tight and needs lots of work.  I think I'll be ready to venture out by next week when the pain (and spasms) from my last fill go away.  I am definitely looking forward to it!  It has been a long time.

I find that it's difficult lately to keep things in perspective, but I think it's a sign that I'm feeling better!  Chemo had me down, but now I'm getting my energy back and I get really impatient about the limitations that surgery and the expander fills have caused.  I hate taking pain medicine, but have found it necessary lately.  I am just ready to feel better and get out of the house and DO stuff.  I would even like to go grocery shopping once in a while!  Hmmm...no, I hate grocery shopping.  But it would be nice to get out of the house a bit!

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!