Speed Bumps

Well It's been a little over 6 weeks since I came home from the hospital.  Recovery has gone a little like the hospital.....twists and turns.  I spent about a week at home with little appointments or much going on but since then I have had at least 3 appointments a week. 

My oncologist and surgeons wanted me to start radiation as soon as possible.  So I went in for one appointment to be mapped.  Mapping is basically when they take pictures with a machine looking similar to a CAT Scan machine and they use there super math and physic skills to determine how the beam should work.  During this first visit I could only get my hand to my forehead because my left side was still to stiff.  Which doesn't work.  They said the beam would shoot through my hand, which would not be okay.  They want to protect any part of my skin that doesn't need to be touched.  

Because I was unable to get my arm above my head my plastic surgeon approved me to start  Occupational Therapy.  The Occupational Therapist is also the lymphedema specialist.   I met with her and learned that the lymph system between the abdomen and the shoulders holds about 21-35 lymph nodes on each side of the body.  On my left side my surgeon removed 13 lymph nodes and on my right side he removed 21.  Which means I get to wear some fancy sleeves, when I exercise, if I start to swell, and if I am in the sun, or if I just have discomfort.  

The Lymph system.  If you look closely you can see white areas where the lymph nodes start and then how they circulate through the body. 

I have been seeing the Occupational therapist  (OT) about 3 times a week for the last 4 weeks.  My right side is about average for movement and has been since I started with her.  My left side is a completely different story.  The skin graft was and is so tight, and because it covers such a wide area it has taken a lot of work to get it moving.  The fact that I also had some of the muscle removed has also caused some mild movement issues.  The therapist described it as being angry.  The muscle is mad which makes it retract so I am needing to work hard to  teaching it to move.  I have been seeing the OT 3 times a week for an hour and doing exercises at home.    

The day I bought my compression sleeves 

Pretty tight, not so sure about them

I am powerful and strong 

I went back in for a 2nd chance at radiation mapping  a couple weeks ago and was able to get my arm above my head to a position they could work with but the machine broke after just a few pictures.  So again I left with a rescheduled appointment. 

During the waiting process for radiation I have continued to see my plastic surgeon, my general surgeon, and my oncologist.  I have completed two cycles of my chemo medication and am healing well. 

I have had some effects from my chemo pills.  Lots of fatigue, some head aches, and foot pain to the point of being unable to walk. My oncologist has given me some ideas for reducing the feet issues so hopefully once I start my 3rd cycle it will work.  If not she will lower my dose, but really wants me on the does I am currently on. 

Another preventative measure added to my regime is a shot (spacing the name of it) and will continue to receive this shot every month for a while.  The shot will prevent me from having a menstrual cycle.  My oncologist doesn't want any surges of hormones in my body right now.  

If you remember from my previous blog my oncologist was going to send off my tissue for further review as to why the cancer had spread from one side to the other and why it had grown so quickly between chemo and surgery.  She did this and was given no further information, the results didn't allow for her to make any further decisions then she has already made. 

For many forms of breast cancer there our guidelines on how to treat and then if needed the oncologist can use there knowledge to adjust here or there but with mine being such a rare type mixed with not having even the typical hormone markers for that type of cancer and then have it quickly grow after chemo it  has become more difficult for my oncologist to follow those guidelines, or even find another treatment measures for me,  she is really just trying to hit me with anything she thinks could help.  In her words the tumor didn't give a sh** about anything and we need to remember this while trying to combat it.  My oncologist is fantastic and I believe she is doing everything she can to make sure we prevent occurrence.

I have recent received another CAT Scan of my neck,chest, and abdomen and the scan was CLEAN! so far we are winning in spite of how nasty this cancer was.    

Last week I went in for my 3rd attempt at radiation mapping.  This time, though I didn't even get to see if my arms had improved because my radiation oncologist came into the room to chat with me.  He informed me that he didn't feel comfortable providing radiation in Bend.  The machine they have wouldn't be appropriate for my case. The placement of my skin graft is right over my heart so this caused him some concern.  He also worried about the dosage being accurate on  both side of my chest because there is a visual dip in the sides.  It is not common to treat bilaterally with radiation, because it is not common for breast cancer to spread from one breast to the other.  I am just that special! :) 

 I took the below picture to give you an idea of what it looks like. By no means do I want anyone reading my blog to feel uncomfortable but I do want everyone to understand that although any breast cancer diagnosis is scary not every breast cancer situation is the same and just like anything else treatment is different for everyone depending on many variables.  This is the reality of mine. 

 He said he was willing to treat me in Bend but he wouldn't feel confident and he said I could be on the radiation bed for a few hours a day.  He explained that there are complicated cases that make treating with radiation difficult and  I am one of those complicated cases. So I agreed to go to OHSU for a consultation.  

I had the consultation this week.  I wouldn't say I was convinced that OHSU was any better then Bend but I trust my doctor. They have not let me down in the last 8 months and I believe he is not letting me down now.  I am trusting that the radiation oncologist at OHSU and in Bend know far better then myself what should be done and because I have the relationship with my Bend doctor I am confident in this decision. Really, the decision is not based on doctors anyway it's based on machine availability.  

 The doctor was nice.  she asked me what I understood about needing to be treated by OHSU and not Bend.  They explained that treatment would be Monday-Friday for 5.5 weeks and they explained what type of machine would be used for my radiation, it's called spirometry-monitored deep inspiration breath-hold (DIBH).  It expands  my chest and hopefully will guard more of my internal organs.  

It's a machine that looks like a snorkel of sorts.  The piece fits in my mouth and I breath into it.  This devise is the whole reason I need to be away from my children roughly 27 days. 

I left the consultation with an appointment for the next day to be mapped/simulated.  They were quick to get the process going and even hooked me up with 3 different social workers to help me locate lodging.  They also said they would do there best to give me early Friday appointments and late Monday appointments to give me as much time at home as they can.  Everyone was friendly, making sure I knew what I was agreeing to.  Although, I already knew what I was agreeing too and any mention of me having young children and the long process brought tears to my eyes. 

Both girls are still in school for another month and a half.  If I take Blakelee, who is really struggling with me being away from me at anytime, then Boston will feel as though she is less important.  I can't home school Boston.  We do not mesh in this way and she is in a wonderful school and program.  I could home school Blakelee.  We do mesh in this way but she to has an amazing school and I have been told I won't feel well, I will be tired, and possibly in some pain.  Therefore, I don't feel like I can be effective if Blake were to go.  which leaves me with one decision to leave my girls home during the week with family.  Now I know what some may be thinking.  It's not that long, they will be fine with family, it's 6 weeks in the scheme of your life. With all of this being true I still can't help feeling awful.  I don't want to be away from them. Most of there life I have been the primary parent.  I did it all.  I have always leaned on grandparents for assistance but in general I am the provider.  Boston's dad lived in Hawaii for a few years and Albany before that.  Blakelee's dad makes choices that are unsafe for her.  So I became the consistent parent, making sure everyone was safe, secure, and thriving.  Luckily, Boston's dad has moved back and is living close enough to help during this process.  Diagnosis has taught me allot about letting go and my girls will still be okay but this is a huge step out of my comfort zone and our general routine and I am just devastated about it. 

I finished the consultation with an appointment the next day to be mapped/simulated.  

I went for the mapping appointment the following day.  It was hard.  It was accepting that I was going to be gone for all those weeks.  Missing out on the morning routines, the bedtimes, and the events.  

The things that once seemed so mundane prior to diagnosis have been the things I want the most in life now.  I crave routine, and work.  Waking to an alarm that says I am going to work and not an appointment.  Feeling refreshed and ready for the day.  Feeling like I am fully present in my kids life and not constantly worried or scared.   I want it all back and the day we headed to Beaverton for the official prep of radiation was a day that just felt like I was giving the okay to keep my life in   uncomfortable territory for another 2 months (ish).  

This may seem dramatic.  It is dramatic.  I will be home on weekends.  I will still see my kids and be apart of moments.  I am also accepting that it feels really large right now, and I am physically and emotionally tired, and that it's okay to be dramatic and feel like this is a really huge deal. I'm allowed to feel how I need to feel right now. 

The appointment went well.  The snorkel thing was just as they had described. A snorkel piece but what they didn't tell me about was the piece they put on my nose.  They plug my nose, I breath through a tube and then hold my breath for 25 sec.  Inside the snorkel there is this door thing that closes so I literally can't take a breath through the tube or my nose.  I do get to hold a red button and if for any reason I can't hold my breath anymore I release the button and I can breath through the tub again.  It was a strange feeling and took a lot of self control and self talk to tell myself that I was in control and could breath if needed but to not freak out and know I could manage the breath hold.  They also gave me "tattoos" little dots that outlined the boarder of the radiation area.  They will be there forever but they are so tiny I am sure I won't even notice.

One of three radiation tattoo's

This is exactly what the contraption looks like.  *image taken from the internet.

At this point I am just waiting to hear they are finished with the plan and receive a start date.  

So that's where we are.  Moving forward with some great news and learning to keep adjusting and accepting what is.