Thursday, January 24, 2013

Radiation Take 1

Sorry for the long delay in posts, I know you were on pens and needles to find out just what is going on in my wild world!  Things are good.  I have been keeping extremely busy and I think that has been good for me.

Last week I started back to work on Thursday.  Before I go into that, I was so excited to have 3 days (Monday through Wednesday) to myself.  The boys were still going to day care and Kindergarten 1/2 of that day for Justin.  Monday morning I proved to myself that I was really going to do NOTHING.  Yeah right!  Just as I was finally smiling about doing nothing, the Kindergarten called that Justin was in the office and had thrown up.  So off I go to pick him up.  We are home that afternoon and he got sick 3-4 more times.  Poor kid, I can not stand to see sick kids.  So Tuesday morning we packed Ryan up for day care but Justin was staying home with me.  He was still feeling sick so I granted him a movie day.  He had gotten through 3 movies when the day care called.  Ryan was running a low grade fever.  So we picked up Ryan and his cough (he was already getting a cough earlier in the week) sounded worse and his nose was runny.  So Wednesday Justin was back at daycare and Kindergarten, but Ryan was sick with the nasty cold virus.  I took him to the Dr. to discover he had RSV, but it was not bad enough that it required any breathing treatments, he just needed some extra love and the use of my new favorite baby item.....the "Nosefrida".  Look it up if you have not done so.  Sounds disgusting, but this little contraption will suck any last remnant of snot out of a child.  It works wonders and just so you know, it does not go into the "sucker's" mouth.  So by Wednesday evening, I was ready for a break and to return to work.

Work was wonderful!  It was nice to get back in to a routine and to figure out what I had missed while I was out.  Again, my work has been great through all of this and I could never thank them enough.  It felt great to be welcomed back by so many co-workers that I consider friends!  That made going back so much easier.  

Friday evening my sister Jessica came in by herself.  This was nice for us to have a third set of hands there but also nice for her since she cares full time for 3 little ones that have her running in every which direction.  Although we did not do a lot, we had a great visit and I was sad to see her go since the next trip is not set in stone.  I do better with good byes when I know exactly when I will see someone again!

Monday I took off because it was my final mapping before radiation.  I went in and again laid on a table for them to draw all over me and take another set of pictures.  This whole radiation thing is a huge process to make sure everything is just right.  The staff is so friendly and professional and I have been very impressed!  I realize a lot that my life and outcome is in their hands, but their professionalism puts my fears at ease a little.  The mapping process took about an hour.  I left with new marker marks and stickers all over me.  If you saw, you might think I let Justin decorate my body....stickers and markers are right up his alley!

Tuesday started the countdown of radiation.  Let me back up a little to Monday just for some laughter.  On Monday when I showed up for planning and went to the locker room, I couldn't remember if I was supposed to take only the top half of my clothes off or bottom half too.  So I was fretting about that....I don't want to walk in a gown without my pants if I was supposed to leave them on.  They will for sure think I'm a weirdo!  Don't tell me you have never done this at the Doctor....Did they say the opening should be in the front or back, did they say leave on your bra or take it off.  I know you know what I'm talking about.  So finally I just bit the bullet and took my pants off.  Why should I know what is right or wrong?  Well, that was when I came out of the changing room in the locker room and asked the women waiting.  I told her I was a rookie.  Luckily I was right, you take your top and bottom half off leaving on your under garments!  YAY!  I did something right!  

So next I go in for my treatment and the nurse puts what is called a "Bolus" on my chest.  She just said this will help with the radiation.  So of course I ask will this help so I do not burn as much?  Her reply was no, this will actually make you burn more.  Of course that would be the answer.....why would anything in fighting cancer be easy??  The bolus, from my understanding, acts as another layer of skin.  The idea is it tricks the radiation treatment into thinking I have thicker skin (Ha!) so it does not radiate as deep into my tissue.  2 reasons from what I have read, 1 is that the tumor was closer to the skin surface so there is not a reason for it to go deeper, the other being that I had a mastectomy and it helps the skin.  I will figure this out on Monday.  Each Monday I will see the Dr. after my treatment for a check up.  So I will get to the bottom of this!  I can tell I'm getting a little tan just after 4 treatments.  The radiated area is just a little darker than my other skin.  It also feels like I have a sunburn a little.  I thought it was in my head, but it isn't.  It itches just a bit and is hot to touch and clothes touching it kind of feels uncomfortable.  Just like a sunburn.  Nothing unbearable just yet.  I also can tell the fatigue is back.  It could be working too, but I am tired!!  

Speaking of tired, Ryan just went down and Justin is just about ready to go to bed so I think I will take advantage of a quiet house and try to get an extra hour or 2 in too.  Thanks for checking in!!



Friday, January 11, 2013

Week 5 Post Surgery

An update on a Friday.  It has been awhile since I have done this!  Not having chemo has gotten me off course!  This was my last full week off before returning to work, next Thursday.  I have to say I have really enjoyed my time off.  While it was more of a recovery than I expected, I have to say I have enjoyed myself.....But I would rather not do this again!

This week we put Ryan back in daycare.  I thought it was best that he have a week or 2 under his belt before I go back to work.  It has been awhile since he has been with his little friends at Tiny Treasures.  I also wanted to ease into the drop off, pick up, washing bottles, making bottles, baths, homework, dinner, bottle, rocking and reading schedule for both of the boys before we are back to a 2 working parent household!  I would say it is going okay so far.  I have noticed Ryan doesn't want me out of his sight when he gets home.  He is very clingy so it is hard to get a lot done.  Since he loves his bath, when nothing else gets him off of me, the bath works!  Justin is doing fine back at Kindergarten.  No homework this week so that has been helpful!  We are slowly easing back in to doing his site words and reading books.  So by next Thursday when I return to work, we should have this all mastered!  Wish us luck!!

Monday I had my radiation planning and Occupational Therapy appointment.  The planning was somewhat painful.  They have you lay on the CT scan table and you lay with your arms up behind your head.  Normally this might be comfortable, but still healing, it was a bit painful after awhile.  While you lay there, they are taking your picture from all different angles, measuring and marking my body.  It was very strange!  You have to have this just right to ensure they are radiating the right person and in the right areas. Next they placed this mold under my head and arms and taped me to it.  I thought it was a joke and then remembered where I was.  As I was taped up, you could feel the mold forming to my body.  This will be used everyday to keep me in just the right pose.  Next they ran me through a CT Scan and then gave me 3 beautiful tattoo's.  One under each arm pit and one in the center of my chest.  I also have red marker with permanent type tape all down the center of my chest that will stay there until radiation is over.  I have tried, so far, these have not worn off so I can only imagine how it will feel when I am done and they rip these suckers off!  The nurses I had were wonderful.

 Next I had Occupational Therapy.  This is due to the removal of 19 lymph nodes and the concern of lymphedema.  They had me stretch in all different ways and measured my ranges.  They also measured both of my arms.  Funny that my right arm, which is the one that is at risk, is actually measuring a little smaller than my left arm so I take that as good news.  They gave me some stretches and massages to do at home and want me there for the next month on Monday and Wednesdays.  On Wednesday when I returned the therapist massaged my armpit for a good 45 minutes.  It is a little awkward but feels awesome because it is still so tight from surgery.  Between Monday and Wednesday I gained 10 "somethings" when they measured my range.  That is great!  I did my homework and also did yoga on Monday night so I'm sure a mixture of both worked.  So I'm well on my way here!

I was also fitted for a compression sleeve to wear on my right arm.  It is a big pain!  It is just so annoying and the thought of putting it on every day makes me mad.  Right now they are saying I need to wear it when I am awake but can take it off to sleep for the next 6 months.  I have noticed I sleep more now so I can take it off!  Just kidding, but I really am not in love with this thing at all!  My hope is they stick with the 6 month thing.

Other than those appointments, I have just been trying to focus on myself.  Being home this week I realized how little time I have spent trying to focus on myself.  For the most part, I chose to ignore myself.  I feel like I was diagnosed and I dove under water and just swam and didn't come up for a breath until now.  Looking back, the past 6 months is such a blur.  I did what I knew how to get through it....ignoring as much as possible that I was sick.  While I don't regret my method, being home I have realized how much I really need to concentrate on myself in order to stay out of cancer trouble.    So I have spent some time reading up on natural methods to stay healthy.  I also spent some time earlier this week with a lovely lady who is battling her own illness and with diet, she has been able to stay on top of her cancer for the past 2 years.  She was nice enough to share some tips with me, which I am working on incorporating.  I have also started a yoga class, which I love!

I feel great about things right now and just feel at peace.  I have been derailed from this feeling before and I am anticipating this feeling could again be taken away from me, but knowing that I am doing everything in my power makes me feel like I am making more of a difference.  I have never just laid down to let cancer win, but I am back and my mind set is where it needs to be to start kicking cancer butt again!!

Have a wonderful weekend.  Oh and in case you ever wanted to know, I received my explanation of benefits for my surgery today.  I could not believe a bilateral mastectomy costs $69,000!  YIKES!  I'm so blessed to have a wonderful job with awesome benefits!



Sunday, January 6, 2013

Family of Four

Whitney left on Wednesday.  Yes, we did it!  Both of us let go!  New Years day was difficult for both of us.  The crying started first thing when I woke up imagining she wouldn't be there the next morning.  It is not all about her unselfishness and help, it was about the bond her and I made and the bond she made with both Justin and Ryan.  We went to her favorite Japanese restaurant for lunch and then we decided it was best if we found something to fill some time so we went to an afternoon movie.   The hardest was at bed time when she rocked Ryan to sleep and then came back to cuddle some with Justin.  I knew as much as my heart was breaking, her heart was breaking more.  At times during the 6 short months she was here, she was more of a mommy to the boys than I was able to be.  She played, pretended, built forts, reprimanded, picked up, dropped off....She did it all.  

When I needed an ear, she was there.  I could tell her things that I know sounded goofy to say them out loud.  I know I'm not silent about a lot, but going through this, I would think a lot about different things, and I could shoot them off of Whitney.  Whether it be about life, illness, my faith in God, anything.  She didn't have to give me answers, her ear was all I needed and my comfort with her made this possible. She looked at me like I was crazy only once that I recall and that was when I asked her if she thought I would be like a baby and if I kept laying down, I would get a bald spot in the back of my head.  She wasn't much help with that one.....So far so good and I have done a lot of laying down;) 

I will never be able to thank Whitney enough for all she has done for us.  When I look at pictures or think about different things this past 6 months, I get sad.  Not that I am sick, but sad that she is gone and some of my best memories now with her revolve around the worst part of my life.  I do not think I could have made it through the chemo, the transfusion, the what ifs.....this nightmare with out her walking by my side.  She was and is my rock! Thank you every second of the day Whitney for all you have done!  

Friday I received my double expansion!  It is actually pretty cool how it works.  The Dr. searches for the "port" within the expansion with a magnet.  Once it is found, they place a needle into my skin (I couldn't feel it due to the nerve damage) and then she uses a syringe to pump in saline.  She did 50cc per side at first and while I could feel the stretch, I asked for more.  So she did another 50 per side.  It is actually very strange to watch your breasts grow right in front of your eyes....Literally!  But I feel a lot more comfortable than I did before this.  As I mentioned, I came out of surgery with a little lift, but I wanted more.  Now I feel pretty comfortable, but could see myself still wanting more;)  Go big or go home, right?  I will not have another expansion until after radiation. 

On the recovery front, I'm doing well.  My arms will almost stretch completely above my head with little pain.   Tomorrow I will have my radiation planning in the morning and after that I am meeting with an Occupational Therapist to go over exercises and massages to do to help prevent Lymphedema.  I am at a big risk due to the number of lymph nodes that were removed and because I am required to lift so much (my 20 lbs 10 month old)  So I will meet with them to see what they can offer.  Tomorrow evening I will start back with yoga.  I'm going to try out a place by my house and the first class is for people that have had a surgery or an injury to help with healing. 

I have also spoken with a clinical trial coordinator with the University of Chicago in regards to a trial for Triple Negative breast cancer.  The study is in regards to prevention of recurrence with diet and exercise.  I can not start this until I am done with radiation, but the timing is perfect because the trial doesn't open until mid-February.  It consists of 4 arms: 1. diet 2. diet and exercise 3. diet and chemo 4. diet, exercise and chemo.  It is a blind draw as to which one I would get, but it is a 6 month study.  They assist with diet, exercise and if I received one of them with chemo, I would get the chemo through the satellite hospital right in New Lenox.  So I am excited that there is something else I will feel like I'm doing to help keep this cancer away after radiation is over.  

For now, it is all about learning and changing my diet.  I have had a lot of people reach out to me with this and again, I feel so thankful that I have just the right people in my life at all times looking out for me and my best interest.  It is difficult to change, but it is required.  So please keep up with the diet ideas, recipes, etc.  I appreciate it!

I will update more after planning this week.  Enjoy your remaining weekend and week!