As the temps start to plunge, kids are back at school and sweaters come out, I hope you all are enjoying Fall.

I have started radiation, had a doctor visit and some labs, so I thought I'd give a quick update.

Radiation is interesting.  First when you walk in the room, the door is about a foot thick.....hmmm.    Once in, getting set up takes a a short amount of time.   They put my arms up in the arm stirrups, then lock my head in by my chin (awesome if you are claustrophobic).  Then they line me up.  The precision of where I am on the table and the lining up of my little tattoos with their machines numbers is quite exact.  Once I'm all locked in and set up they all vacate the room and leave me alone with the radioactive machine.  No wait, stay with me, really it will be fine.........  :/

The Chin Strap 

   

I am zapped a total of nine times with several movements between.  The square rubbery piece is like a second skin that is added halfway through when they are near my ribs to give extra protective covering.  If I have no other doctor appointments, I'm done and say goodbye until tomorrow.  I get home and have special lotion I have to rub all over the radiated area.  This is to try and alleviate some of the burn and prevent cracking of the skin.  Rinse and repeat every day, Monday through Friday.

Side effects are not as severe so far as chemo, but the fatigue I had enjoyed a vacation from is back.  I am also experiencing much tightness across the entire chest and the burn has started, especially near the armpit.  I have started having small headaches almost daily, and something is giving me some occasional stomach pain.  I am also experiencing sporadic neuropathy in my toes and fingers.  My right arm is sore daily from the radiation and tightness, as well as muscular soreness.  My fear of lymphedema is alive and well.   My sleeping is interrupted most nights.  I'm trying to work on it, for now naps will have to do.  I know that may not sound like it's not as bad, but chemo was worse.  I just hope it doesn't get any worse.  Some I'm sure is still from chemo, it takes quite a while to get out of a body, up to a year or sometimes longer.  Thankfully Summer is over and I got to enjoy most of it.

My radiologist oncologist says I'm doing pretty well and about as expected with side effects.  My white cells count has improved but only for a chemo/radiation patient.  If you had my numbers, well, you too would be visiting the doctor ;)  While I thought I graduated from Physical Therapy, she is sending me back due to all the tightness and soreness.  More appointments.  Ugh.  Hospital fatigue is also setting in.  If you need a tour of Froedert let me know, I've got it down to a science ;)

I have been to a few survivor classes to try to figure out how to go from survival mode to living.  I have been reminded each time how lucky I have been to have so many people in my corner and there for me.  Not everyone is as lucky.  I couldn't imagine having to do this all alone.  So thank you all for being there.  :)

My dear FHS family continues to keep me smiling.  This month they all filled out little buses with notes of hello or inspiration.  They are the best.  Our Japanese teacher was in Japan this summer with some of the HS kids and took a picture of this magnificent car.  I asked him to bring me one home.  He did!!  Okay it's not quite my size for driving but.........

 

I have a oncologist appointment coming up next week and believe I may have my first 3 month CT scan ordered.  Yikes.

Til next time, enjoy the cool weather and changing colors.  With Pinktober a few days away, I'm going to have to come up with some good posts.  Guess I better start thinking ;)

Happy Fall Ya'll!

It blows my mind that we are almost in Fall already.  I say this as all things pumpkin has returned.  I've been at this for 9 months.  Wow! 

First and foremost.....

...........I have eyebrows.

Now on to more important things.

Along with Fall brings back the sport that I love.  If I can make it out at all, its going to be for Packer or Badger games.  I love the excitement generated for the Packers no matter where you are.  Badger home games are some of the best tailgating.  If you've never been to either and have the opportunity, don't pass it up.  Worth every penny and moment.  Go Pack, Go!   🏈🎉👍


Surgery has been over a month now, and all drains removed.   I still have pain, differing levels, some days okay, some days bad.  But pain every day.  Ugh.  Thought it would be gone by now.  My scars are healing nicely.  Still have some glue but it's all starting to come off.  I'm as flat as a 13 year old boy.  I have put foobs in twice and felt stupid both times.  Everyone knows I had a double mastectomy and they're fake.  Really, really fake as in crocheted.  They rub the scars which can be quite uncomfortable so I wear them seldom and am getting use to the stares when I go out.  Short gray hair and no boobs.  That's me.

School has started and I'm not there.  I'm very emotionally torn on this.  For those of you that know me and my job, you will probably find that hard to believe, but it's true.  I have never missed the first day of school in 24 years (except once for childbirth).  I love the excitement of kids coming back to school, or freshmen being completely lost.  To watch the progression through high school is something.  The confidence most have by their graduation day is satisfying as a schools job well done.  Not all of them, mind you, but a good chunk.  So, I have missed graduation for the first time in years and now the first day, heavy sigh.  They will survive without me, it's just wierd.  And I miss my work family.  Been with them nearly as long as my spouse!  Treatment obviously most important, but........

Speaking of graduation, I have just graduated from several weeks of physical therapy to help get my arms over my head, necessary for radiation.  You never realize the muscles and movement you have, until is gone.  Being impatient as I can be, I pushed very hard to get this done so I can move to the next step.  I was a good patient and did all my exercises every day which helped.  I still have a little more to go, but am almost there.  The stretch of the pecs is the longest recovery.  I want to get this all over with and behind me.

I have been set up for radiation, my doc is working up my plan and I start in a week and a half.  Every day for 6 1/2 weeks.  I lay on a table, arms above my head, and a VERY claustrophobic chin strap locking me in.  I have four freckle size tattoos on my torso for lining me up.   Good thing I already have a few of those so it doesn't bother me.  The one right in the middle of my chest is the only visible one.  I'm told my dosage will increase every week until it's pretty high toward the end.  I will have the equivalent of a very severe sunburn on my right side by then.  Great, I'm right handed.  How do you do anything without rubbing your side?   I just got to being comfortable sleeping on my side again, darn it.

The things we do to kill cancer........   😀

I have made every effort to get out and do things on my good days, and have enjoyed my shortened summer, unfortunately chemo stole my first half.  I hope every one of you did as well.  Life is to short to sit at home.....unless it's winter, then you go south :)

And speaking of south, thanks to Frontier and their ridiculously low prices, and my push on PT, I get to visit my pelican friends one more time before being harshly zapped.   New addition to flying attire, a compression sleeve to ensure no aggravation that can increase chances of lymphedema.  Definitely want to avoid this at all cost.

The following is a fantastic short and simple description of my cancer (minus the triple negative).  Most importantly is the "No Lump, Still Cancer."  Its important for women and men to know, not all breast cancer has a lump.  I did not know, nor did I have a lump.

Inflammatory Breast Cancer (IBC)

IBC is a very aggressive more rare form of breast cancer, in which cancer cells block lymph vessels in the skin of the breast. This type of breast cancer is called “inflammatory” because the breast often looks swollen and red, or “inflamed.”

Mammograms tend to miss IBC, as it is webby and scattered in the breast like cotton candy, making it difficult for a mammogram to read. About 10% of women with IBC do have a lump, but with the other 90% not having a readable lump, you can understand why we use the tag line, "No Lump, Still Cancer."

IBC progresses rapidly, often in a matter of weeks or months. The earliest IBC can be diagnosed is stage three, so if a women is having signs of IBC, a visit to physician to rule it out needs to be arranged as soon as possible.  

There is a quick check list of symptoms of IBC.

Inflammatory breast cancer symptoms may include:

• Breast swelling, where one breast is suddenly larger than the other
• Breast that feels warm to touch and may look infected
• Itching or shooting pain
• A dimpling of the breast skin that looks like an orange peel (peau d’orange)
• Thickening of the skin
• Flattened or discolored nipple
• Swelling in underarm or only on one side of neck
• Might feel lump, however lumps are not common in IBC

This comes from The IBC Network Foundation https://www.theibcnetwork.org/what-is-ibc/. The woman who runs it is just like me, triple negative inflammatory breast cancer, an 8 year survivor, and my inspiration.  She does fundraising that is specific to IBC research and education.  She is an outstanding advocate for us.  This website is loaded with information.

If you are looking for a place to put tax deduction dollars, this is a good one.  She is doing fundraising here.  85 cents of every dollar is sent directly out to research and education according to their site.  Just sayin...........  :)

 Check those boobs folks!  That includes you, men!