Sunday, July 25, 2010

The Plan

Lots has happened since my last post.  My calendar has been full of doctor's appointments, with many more upcoming.  Most notably, I saw my oncologist on Wednesday last week and we now have a plan of attack. 

On Thursday, I will have my first chemo and the plan is that I will have 3 week cycles; I will get chemo once a week for two weeks and then have a week off.  I will be on chemo indefinitely.  My hair will fall out (again).  I am not thrilled about this, obviously, but am willing to do what it takes to knock it out.  Am I ready?  I think not, but there is nothing that I can do to get that way.  I am ready to get my cancer under control, but not looking forward to the process.  It has been a rough few weeks, to say the least.  I vascillate between trying to wrap my head around this mess and trying to keep my mind off of it.  Not sure which is more detrimental, but it is difficult to cope with my new diagnosis and upcoming treatment.  I feel like I have just recently gotten back on track with my health and am finally feeling good, so it is quite a blow to face this crap once again, knowing that I will not be feeling well and will have to learn to cope with side effects all over again.  This time around, I will be getting two different drugs, Ixabipilone and Carboplatin.  It will allegedly be more tolerable than last time because of the dosage. 

When I saw the radiation oncologist a few weeks ago (just after my last post), she was not hopeful about treating me with radiation to zap the cancer out of my lymph nodes.  She told me at the time that she wouldn't rule it out and would think about it and consult with other colleagues, but she felt that the cancer might not be confined to the areas that showed up on the PET.  She was very concerned about the rash on my chest and though I had an upcoming appointment with the dermatologist to have a biopsy, she was able to get me in to see the surgeon for a biopsy immediately following our appointment with her.  The results were back the following day and it turns out that the rash is cancerous.  It is breast cancer that has metasticized to my skin, called lymphatic dermal invasion.  Apparently, it is tough to control, but I will have 10 radiation treatments to zap the rash and hopefully stop it in its tracks. 

On Friday, I will be going to Duke to meet with an oncologist there for a consult/second opinion.  My doctor has been very supportive and helpful in facilitating the appointment and getting me there quickly.  I had hoped to find a clincial trial with PARP inhibitors, but didn't meet eligibility requirements for any that I found (with lots of help from a few different people).  By going to Duke, I will see a specialist and will then be on their radar should some new and promising treatment become available.  She will be working with my oncologist and together, we will forge ahead with a treatment plan. 

I am happy to report that I will still get to attend First Decents, the kayaking camp that I signed up for and have been looking forward to attending for months.  My doctors think it's a good idea for me to go and I hope that it will help me get my head straight for the battle ahead.  Despite my excitement, it is going to be positively brutal to get on a plane and leave Scott and Annabel behind for a whole week.  Getting ready for my trip has been a good distraction and I'm headed to the attic today to find some ski gear that will serve a dual purpose.  I love gear!  I think I'm just about all set between recent shopping trips and stuff I already had.  I'm concerned that the (unknown) chemo side effects will hit just in time for my trip, which is my chemo "off" week.  The trial nurse said that she would schedule me to come in and get IV fluids the Friday before I leave to hopefully help me out.  I don't want my trip to be fouled up with feeling foul!  I think I can also expect to lose my hair while I'm there, which I'm sure will be especially tough being away from home.  I will be with other cancer survivors, so at least it will not be shocking.

Annabel is doing great.  She is talking up a storm and singing and dancing and coloring and painting and playing with her babies and using the potty (still working on poop!) and going to "school" and camping and travelling....we have had a busy and eventful summer so far.  I am not quite sure how to prepare her for what is coming.  She was only 17 months old when I was first diagnosed and turned two a month after my last chemo treatment.  At 31 months, she is so much more aware of what is going on and is more perceptive than I sometimes give her credit for.  I am sure that she will adjust to our "new normal", but I hate thinking about the effect it will have on her.  I don't want her to fret or worry because I'm sick.  Last week, she spent two nights with Scott's parents to visit and so that Scott and I could go to my Wednesday appointments and I had a CT scan on Thursday.  I was so sad and upset, I felt like it would be hard to keep it together when she came home.  I was really worried about it, but she was just what I needed to pull myself together. 

I am not sure how Scott is able to keep it together, but he is doing an amazing job of taking care of me and Annabel and the house and the dogs and of course, work.  He has been with me to all of my doctor's appointments and is able to ask the right questions when I am too stunned to process what is going on.  He comforts me when I'm down and knows exactly what to do to bring me out of a funk.  Or hysteria, for that matter.  There has been a fair share of hysteria lately!  I could not do this without his love and support.  Cancer aside, our life together is pretty darned good.  I could never have imagined that any of this would happen, but I am incredibly lucky to have him by my side for this wild and scary ride.

To keep things upbeat, I am going to mention a few things I'm doing to fight the fight before chemo starts.  I am still going to oncology rehab to exercise.  I have missed a few days due to doctor's appointments, but I go whenever I can and do as much as I can while I'm there.  The trainers and nurses involved in the program are awesome.  They are encouraging, supporting and have been really sensitive during my diagnosis and this waiting phase.  I can't say enough good things about this program.  It really is set up to help participants to succeed in developing healthy exercise habits.  I hope that I will be able to drag myself there once treatment starts.  I have already had rough days; last week, they had to go and find some tissues for me because I cried half of the time I was there.  I almost didn't go because I knew it would happen, but F it, I am going to make things better for myself and this cancer shit is pretty raw.  Exercising while crying is nothing compared to walking around bald.  But I digress....I am also trying to overhaul my diet.  I am really freaked out about making things worse and my appetite is still not "right" from my last stint with chemo.  I will eat whatever is in front of me, but when I am left to my own devices, I can't think of anything to eat.  I am cutting sugar out, reducing the amount of meat I eat and upping the fruits and vegetables.  I rarely drink diet coke anymore and have switched to unsweetened tea or water if we are out to eat.  My favorite healthy concoction so far is sauteed spinach and roasted beets over quinoa, sprinkled with goat cheese.  Pretty impressive, huh?  I am far from where I need to be with this effort, but it's getting better.  I am trying not to beat myself up because I think most things are fine in moderation.  I drank half a pitcher of margaritas last weekend at La Paz.  That was naughty, but if you have ever had a margarita there, you would understand. 

Tomorrow, I have an appointment to get fitted for a compression sleeve to prevent lymphedema.  I HATE nude pantyhose and this will be like wearing thick nude pantyhose on my arm.  In the hundred degree heat.  I saw a physical therapist a few times who prescribed the sleeve as a precautionary measure.  I have been dragging my feet about getting it, but my hand has started swelling in the past week, so I need to get one, like, yesterday.  At this point, the swelling is minor and would be imperceptible except that I learned what to look for from the PT.  I also need to make an appointment with her as I cancelled the last one for my biopsy and haven't rescheduled yet.  I am curious to see whether my measurements have changed since I started exercising.  Just another unpleasant thing about this whole situation.  Waaaaah!  I should add that there are sleeves available that are not "nude"; just not sure that I will invest in a color or pattern right off the bat.  These things aren't cheap. 

My update might be full of whine, but I still think I have a pretty good attitude, all things considered (I didn't even write about my trip to the dermatologist!).  I am lucky to have the love and support of my family and friends, so thank you all for helping me do this!  Also, though things are not great right now, don't be afraid to ask me questions or call me.  I don't remember who knows what half the time, so remind me to update you if I don't and you want to know what's going on.  And I'll try to update more often.

1 comment:

  1. Katherine,
    I know it's been a while since we've been in touch. You, Annabel, and Scott are on our minds quite a lot! This new news really sucks! We hate it so bad! But, you are amazing and amazing things do happen when you least expect it! Prayer works and you are definitely in mine! Your attitude is truly inspiring!
    Take Care,
    Gina, Rich, Spencer, & Russell