So I lied.  Quick update before the holidays.

First round of Xeloda is done and so far the side effects are manageable.  Some minor blistering on my feet, fatigue, continued neuropathy, and general spaciness (yeah, yeah, yeah keep your comments to yourselves....)

I have received the report for my most recent CT scan.

The following are the important parts:

Impression

1. Interval worsening of the ground glass opacities throughout the
right anterior lung fields when compared to 11/08/2016. Although
slightly atypical location for radiation pneumonitis as the opacities
are more centrally located, this is still a possibility given the timeline
of radiation therapy. Another possibility is infection.  Malignancy 
is unlikely.
2. Nodular soft tissue thickening in the right axilla, likely postoperative.
3. No finding suspicious for metastatic disease.

In other words, it's not cancer.

Thanks for all the kind words and encouragement.  Wanted to
end the year on a good note.  👍😃  Stay warm everyone!🌴🌞

Merry Christmas and Happy New Year!

My menagerie ;)

Happy St Nick, Merry Christmas and Happy New Year!

Thought I'd stop in and give a quick update then take a break for the holidays.  Thanksgiving was a nice small gathering with the family.  Although many were missing from our dinner, they were enjoying dinners with other family members.  A reality with grown children.

I have not had the best week since then.  My CT scan was redone, thankfully no dye needed.  Since I'm allergic to the dye I usually have to start medication the night before to prevent any reaction.  The less meds I have to take the better.  The results came back again with a "spot".  The doctors are currently not worried and calling it inflammation.  The oncologists say its from radiation, the radiologist says it's not.  Any way you look at it, its there and wasn't before.  They will keep an eye on it and will look at it at my next 3 month checkup.  Fingers crossed it goes away or doesn't grow.  And my recent, aggravating cough goes away.........the life of a cancer patient.

Daily Doses

I've started my new chemo pills, Xeloda.  I take 4 in the morning, and 4 at night.  (Along with Vitamin D need huge amounts to help prevent, Tumeric Curcumin proven to be affective in preventing when taken with an oil, and Citalopram for continued help with anxiety and depression).  I'm now considered to be toxic in some ways so precautions are taken again to ensure no one else is exposed in the house.  Only I handle the pills, cleanliness is essential (dammit), and clothes are to be washed separately.   All just precautions.  My hands and feet need to be constantly moisurized to help with the hand-foot syndrome that is prevalent with this medication.  Alcohol is a no-no, so it's sparkling apple juice for New Year's Eve. 🎉🍷🍎  I have a follow-up with the oncologist December 21st to see how I'm handling the meds before the holidays arrive for everyone.  Having started me with the highest dose possible, they have a little wiggle room if the side effects get to bad over time.

My biggest disappointment is my employment.  I informed them I would be returning February 6th, barring any complications and was informed by the HR director that my position is no longer available, it is being, or has been, offered to the person who was filling it in my absence.  The distressing part is two-fold.  For the first time in 24 years at the district, I have no idea what I will be doing or where I will be going upon my return.    Secondly, I may not be returning to the school I have been at for all 24 years, and to the teachers and support staff that have been a big support to me during this battle.  I will have a job and for that I'm thankful, its just very disappointing to have to start over after all these years and a very difficult last one.

I have time to deal with my thoughts on this, and to deal with the chemo I have to take.  In the big scheme of life these are all small potatoes, and I need to remind myself of that.  The goal is years and years cancer free.  I have grandchildren I haven't met yet ;)


 Most times I try to be as uplifting as I can, reading and rereading this blog so as to not be too negative.  This time it's just not that easy.  I am truly grateful for so much in my life.  I have been blessed in many ways, and know not all are as lucky as I am.  But the continued disappointment with things, like some of the previous mentioned being unclear, gets hard to keep a smile and say it will be okay.

Anyway.......

On the flipside......Went wedding dress shopping with my daughter's and their grandmother at Veras in Madison for my oldest daughter's dress.  What a day.  The women were so accommodating and helpful.  When they say you can tell which one is the one, they are right.  After a few try-ons, the moment we walked in the room to see her in "the one", her face was beaming.  We cried, and said Yes to the Dress.  It was a great memory.  I am very much looking forward to her wedding.  And, bonus, I will have hair, eyebrows, and eyelashes for pictures 👍👍

About 52 😀

Another happy day this month will be my birthday.  I'll be 52 and happy to celebrate.  I use to not celebrate thinking it was just another year, another day.  That is not true.  Every day, every year is a gift.  Enjoy them.

Time to finish my Christmas shopping, I'm never done until the weekend before.  I hope you all have a very Merry Christmas and Happy New Year.   May the year 2017 be a much, much, better year.

  

Happy Thanksgiving Everyone!



I have so much to be thankful for this year!!

First I am thankful to be alive and well to enjoy the Thanksgiving weekend with my family and friends.  This time last year I had no idea what was coming my way in one short month.  It has been a year of trials and triumphs to be sure.

I am thankful for my co-workers who have gone out of their way to make sure I know they are behind me 100% and they might even miss me, mostly my sarcasm ;)  I can never repay them for keeping me in their thoughts and prayers while I am away.  Their latest dislay 😀❤

I am thankful for my friends who have been with me all the way through.  They have been there if I need them and have been there when maybe I thought I didn't.  They have been understanding of my sickness,  but have also helped me feel "normal" when I needed to.  Another group of people I can never repay for their friendship.

I am thankful for my family who have been with me every step of the way.  This is a diagnosis that no family ever wants to hear.  The shock and initial despair is hard on all involved but we have bounced back together and look forward to the future, including a wedding!!


I am thankful for my dog, Lola who has been my constant companion through the entire process and done nothing but love me.

And finally, I am thankful for my husband.  30 years ago we made a promise to each other never really knowing what was to come.  He has been my rock, my friend, my companion, my love through this entire battle.  He has asked all the questions when my mind stopped at the word "cancer".  He has been there to pick me up when I was so down, who made me push myself when I thought I couldn't, my travel companion that reminds me to relax and enjoy life, and the man who takes care of me better than anyone else could.

I have visited with both my radiologist and my oncologist.  I am released from my radiologist with a visit in 3 months.  My skin has healed and is about a week away from being totally healed.  The body is an amazing thing.  To have suffered such burning and be healed again with little to no indication of how bad it was, wow.  I am now working with my Oncologist and will start my oral chemo on December 1st.  I will take 4 pills in the morning and 4 at night, two weeks on and 1 week off, for 6 months.  The last adventure.  I had a CT scan that was blurry and inconclusive so I have a retake in a week.  Shouldn't have sneezed 😕  I'm looking for good results :)

I believe the light is at the end of the tunnel.  I hope to be back to work February 6th, barring any complications.   It's been quite a year.

I hope everyone has a great Thanksgiving and enjoys the chaos that is to come preparing for Christmas.

Today was a very big day in the Kuspa household.  I did my last radiation treatment today!!  I can't tell you how happy I am to be through this.  Five months of intravenous (or port) chemotherapy, a double mastectomy and an oopherectomy, and 33 rounds of radiation and I'm still standing!

The last week was a booster week.  They add this apparatus on to the machine and concentrate on my scar area.  Really going after any little suckers that may be left.




These are my pictures after 6.5 weeks of frying.  My skin may get a little worse as the effects catch up,  but it will also start healing in areas that have not had direct radiation the last week.

I now have several weeks of skin care to help with the healing process.  There are several areas that are 2nd degree burns.  This was all necessary to burn my chest wall to kill all the skin that could be or was involved in my Inflammatory Breast Cancer.  Being a breast skin as well as a breast tissue cancer makes it different from others.

The skin care routine looks like the picture below.  There is a soaking of the skin with domeboro on the "wet" (weeping) patches of skin, and saline solution on the very dry  parts.  Once soaked for approximately 20 minutes, the entire area, besides the open areas, is covered in aquaphor.  Once covered, a mesh piece is put over the open areas to prevent the skin from sticking to the cotton pads that are then put on the skin to soften anything touching it.  This is repeated twice more through the day.

Unfortunately, I seem to have developed an infection below the armpit.  It is very, very sensitive to any touch and is swollen.  I am on antibiotics to fight that, and pain meds for the rest.  I feel so terrible for anyone that has or is going through severe burns.  I can't imagine the pain they went or are going through if this is how I feel from my less severe burns.

I have a CT scan scheduled for Tuesday.  It is my first 3 month check up.  It is a month late because of the radiation.  I'm nervous to see the results but excited at the same time.  I haven't really had anything to check on my progress since just before chemo ended.

Usually this would be the end of treatments, so I rang the bell at the hospital today.  But for me there is one more step.  Once my skin is healed, I begin my Xeloda.  I have to take 4 pills in the morning and 4 in the evening.  Should be interesting since I hate pills.  Give me a gummy med and I'm good.  Swallowing horse pills is not my idea of fun....for 6 months.  Only good thing is the mopping up of any cells that may remain.  Possible side effects are low white cell count, fatigue, nausea, and hand-foot syndrome, that I know of.  Time will tell what I get, quite the lottery.  :/

One thing that won't happen I'm told, I won't lose my hair!!  Which is great since I just had my first haircut in 9 months!


One year ago this week I was in Colorado without many cares in the world.  Today my perspective has changed on many things.  Don't sweat the small stuff comes to mind, and enjoy the beauty surrounding you.

A picture from some of God's country taken last year.

Dont forget to vote on November 8th, and celebrate our veterans on November 11th.

Hope everyone has been enjoying the beautiful Wisconsin Fall.  My prayers go out to any that may have been affected by the recent hurricane. I was shocked at how bad the flooding was.   Florida is still standing, so I have to go back and check on my pelican friends soon to see how they fared.  I know some of my favorite places have had to shut down to make repairs.

Bob and I have taken, I believe, our last Fall ride.  One was very nice going to several working farms.  I tried to find the peacocks but they were "chicken", hardy har.  Ran when we all arrived.  So we settled for buffalo and cattle.

  

I am on my 4th week of radiation.  I have met with my radiologist a few times.  We meet once a week to see how it's going.  I have xrays done once a week for her to look at, then she does a visual check.  Until now it's been relatively good.  The worst of it has been the continued fatigue after treatments, which I'm beginning to believe that will never go away.


I have been watching my chest and underarm change colors.  My chest is quite red, and is painful and itchy.  I've been given a steroid cream for the itch, and lotions for the dryness and burn.  I'm half afraid to do the steroid cream since it thins the skin, which in turn makes the radiation burning worse.  My underarm has been mostly numb since surgery, and while annoying, I am glad since it has helped ward off pain until now.  The color of my underarm is a blackish purple.  This morning I also noticed the gray the nurse spoke of.  That will start to crack and peel.  The pain started to really set in this morning.  I knew it wasn't my imagination when the techs I have seen every day asked me how it felt.  Since they are in the know, I've turned the corner in my treatments.

Two more weeks and I have no idea what to expect.  I've seen what it did to my father in law and pray it doesn't get that bad.    

Found another fun thing getting ready for a wedding.  Changed my toenail polish, and underneath I found this.....


I was lucky I didn't have them turn completely black or fall off which is a chemo side affect.  Needless to say, the polish went back on.



I know this has been Breast Cancer Awareness month.  I did post something on Facebook at the beginning of October, but figured I've been doing my awareness since January.  Made my donation at the beginning of the month to IBC Foundation, and wore my pink like a good girl ;)

This is a great month to make your appointments for mammograms, to check yourself, and to speak about the importance of early detection.

My daily morning view.  

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!