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.

Hope!

I was able to get an appointment with my oncologist this afternoon.  This is a feat and a credit to how wonderful she is because I was the last appointment on Friday afternoon before she leaves for vacation.  Up to this point in my diagnosis, I have felt sort of shuffled around and it didn't help that I had a new surgeon, too.  It helps to hear bad news from someone who you know and who knows you. 

My oncologist got right down to business.  Her best case option is sort of "outside the box".  She thinks that there is a possibility that I may be able to have radiation to stop this cancer in its tracks.  It is not a sure thing; I have to meet with a radiation oncologist next week to see whether this is an option for me.  I guess it has to do with the fact that the cancer is in a few different places.  My doctor has another patient in a similar situation that is going through this treatment right now.  This would be GREAT.  Radiation is sort of scary, but I would take it over chemo any day (as long as it does the work!). 

I also asked about the possibility of specialists and/or clinical trials outside the area.  She is working to get information about any trials that I may be suited for at either Duke or UNC, and I should hear something about this next week.  Not only did I get a last minute appointment, my doctor is going to communicate any pertinent info via email WHILE SHE IS ON VACATION.  And I already thought she was awesome.

I have this rash on my chest (left boob) that has been there for over a month now.  I had her look at that and now I need a biopsy to make sure it isn't some kind of manifestation of my cancer.  The treatment for that sounds absolutely awful, so I am hoping that it is some kind of fungal infection.  The doctor suggested this as a possibility as well, so she prescribed some kind of topical cream to use on it until I see a dermatologist next week. 

So, also, part of my pathology hasn't come back yet, but there is the possibility that one of my receptors is positive this time around.  That would be good because I would be able to take tamoxifin to keep cancer at bay; this is something that was not an option the first time around because my receptors were all negative.  I am anxious to get the results.

I feel like I got some good news with lots of possible options today.  I really expected to go in there and leave with an appointment to get another port and start chemo next week.  Really.  So it was a pleasant surprise to walk away from the appointment with hope that treatment might not be chemo for an indefinite period of time.  Because basically, if the radiation thing doesn't pan out, it is likely that I will have to have chemo for the rest of my life.  That doesn't sound so good.

It's baaaack.

I had a biopsy on Tuesday and went to the doctor today to get the official news.  The cancer is in my lymph nodes under my left arm and above my collarbone on the right side.  Apparently there are other suspicious areas as well, but just in the lymph nodes. 

The next step is a visit with my oncologist to formulate a plan of action.  She is going on vacation next week and I'm really glad that she was able to squeeze me in this afternoon.  I didn't want to have to wait an extra week to get started.  I will be having chemo, but not sure yet what kind and how often.  My guess is that it is going to be an indefinite situation and that they will just switch it up as needed.  I'll learn more this afternoon. 

This time, I plan to get a second opinion.  I have absolute trust in my oncologist, but I know that there must be someone, somewhere that is a specialist or is studying my particular kind of cancer.  Hopefully, I will be able to find a promising clinical trial.  There is a new drug that hasn't been released by the FDA yet that has shown lots of promise for people with the BRCA gene and who have triple negative breast cancer.  We'll see.

Yesterday, I still wasn't feeling great from the biopsy that I had on Tuesday.  It is hard to shake that anesthesia!  I went to oncology rehab anyway and I'm so glad that I did.  I thought I would take it easy, but the trainers only modified one exercise for me.  I did the regular workout otherwise, and left feeling good.  I know a big part of it is getting there.  The oncology rehab program lasts 10 weeks and I will stick with it if they will let me, and I can't think of a reason why they wouldn't. 

I think I'm doing alright dealing with the situation.  I think I mentioned before that at least there is less shock with this diagnosis, so I feel like my head is on somewhat straight.  Ativan helps when needed; I have had some panic attacks, but I think that is to be expected.  The waiting part before treatment is especially hard mentally and emotionally because there is no action yet.  Once treatment starts, there is at least the confidence that chemo is doing its job.  I am definitely keeping my normal pace for the time being.  Things will change soon enough.

Still no update on the fun stuff that's been going on lately!  I will get to that once this whole diagnosis thing is over and my treatment plan is in place.  I'll keep you posted!

July Already?

Poor, neglected blog.  The last part of May and all of June were so busy that I hardly had time to catch my breath.  I have been having a fabulous time, full of great adventures and lots of visiting with family and friends.  I have lots of good to report, but also some not so good.  I guess I'll start with the bad....

I still have a lot of tightness on my right side from surgeries and radiation.  I am (finally) seeing a physical therapist to help (more on that later), but a few weeks ago, I was especially sore for a few days.  I was trying to locate the source of my pain and found a lump above my collar bone at the base of my neck.  I called the doctor immediately and went to see her two weeks ago.  She agreed that there was cause for alarm and sent me for a PET scan, which I had last Tuesday.  My oncologist called with the results last Thursday afternoon.  The lump is "highly suspicious".  The conversation is a little blurry because while I was not surprised, I was still in shock.  Apparently, areas of "suspicion" light up on the scan.  This area wasn't bright and I'm not exactly sure what it means....whether that means that it is not very concentrated or if there isn't much of it?  I don't know; I'm sure that I will be learning more about that.  It is not good that this is happening, but the scan is from the top of my head to mid-thigh and the only areas of suspicion were the lump that I found and something under my left arm; presumably a lymph node, but she said that treatment for the other would take care of it.  The next step is a biopsy and after several calls to harrass the schedulers at the doctor, who were dragging their feet, I finally have an appointment to see a surgeon on Friday morning.  I still don't know whether he will be able to biopsy the lump at the office or if I am just going to meet him to schedule the biopsy.  I am ready to move this along as quickly as possible.  I do not like the thought or idea of cancer in my body and I am ready to get it OUT.  My oncologist said that if it is positive, I will have to have more chemo.  I am prepared to fight this battle again; I want it GONE.  I am very anxious to move through the diagnosis so that I can start the treatment.  I want to move past this; the sooner the better.  In the meantime, I feel like I have been calm, but with moments of hysteria.  I have had to employ my old friend Ativan some, but not too much.  The support and encouragement of my family and friends is helping me cope during this period of waiting.  So, THANK YOU for reminding me that I can do it again! 

Part of my recovery is oncology rehab.  Part of oncology rehab is physical therapy.  I have been to the physical therapist twice so far and she says that I have a full range of motion, despite the tightness in my chest, especially on the right side where I had more extensive surgery, lymph node removal and radiation.  I went last week to learn more exercises and she massaged my arm where I have cording from radiation.  Cording is gross.  It feels like there is a piece of string under my arm that goes all the way to the tips of a few fingers.  And the string feels like it is just a tad too short, so I get a weird shooting pain sometimes when I reach too far or the wrong way.  It is much improved after just two visits to the physical therapist.  It is uncomfortable when she massages it, but I have less pain immediately afterward.  The plan is to only visit her once more for more massage and then I'll be released from her care.  The biggest part of oncology rehab is that I meet with other cancer patients at the hospital's fitness center three times a week to work out.  I really love it so far.  The trainers monitor my heart rate and activities and my stamina and flexibility have improved each time I've been.  I am trying to challenge myself to work hard so that if (WHEN) I have to start chemo, I'll be in a better place physically.  It is also a great distraction at the moment.  I told one of the trainers about my lump and let her know that I plan to finish the 10 week program despite treatment.  It makes me sad to think about missing out on that.  After just three sessions, I feel better overall, mentally and physically.  Being there makes me feel like I'm doing something to make my condition better.  I have an upcoming appointment with the registered dietition there as well. 

My hair is growing like crazy.  I still like it short, but for some reason am very hesitant to cut it.  I have weird cowlicks in the front because I have a widow's peak, but I just sort of try to smooth them over as much as possible.  It is long enough now that it sort of feathers on the side sometimes and I don't care for that at all, but again, hesitant to get a haircut.  I don't use any products or anything on it.  I never have used much on my hair (well, not in the last 20 years!) and I don't think it would do any good or make it look any different than it does.  I love that it is low maintenance!

Well, I feel like this isn't much of an update because I haven't mentioned our new (very old) motorhome or all of the trips I've taken lately and I didn't mention Annabel and Scott at all.  That will have to wait for another post very soon!