Sold my dance studio! I am unemployeed!

I should have posted this a couple of months ago, but I have been busy!  So over the next couple of days I plan to get everyone updated on the saga that is my life.

I sold my dance studio!  Yep that happened.  I never imaged that I would ever do such a thing.  I finally got to a point in my life where nothing was working out.  If it was meant to be it would have been.  People keep asking me why, and I have many reasons so I am going to try to organize them here.

1.) I am no longer able to teach dance, due to my many health problems.   I am not sure when I will be able to dance again, it is getting hard to see the light at the end of the tunnel.  I still have 3-4 surgeries ahead of me and 2 Herceptin treatments.  With my UC will I ever be continent again?  Kind of hard to dance with an ostomy, you never know when you'll spring a leak.   What will having a j-pouch be like?  Will my BC return? If so will I survive it again?

2.) Time.  Last week, this week, and next week I have three doctors appointments.  I was told early on that things would eventually slow down, well they haven't at all.  It is hard to run a business when you are spending %50-%75 of your time battling health issues.  My students and clients deserved someone who could be at the dance studio, and that just isn't possible for the time being. 

3.) Confidence.......The last year I've been spending a lot of time asking myself what if?  What if I didn't make it, who would run the studio?  Would that burden fall onto my family?  Would it close?

4.) Priorities........Should I really be spending 60-70 hours a week working?  Especially if those hours are nights and weekend (aka time with family and friends).

5.) Stress!  What if all the stress of running a business caused some of my health problems?  How is staying put and maintaining the same lifestyle beneficial? 

6.) I need a CHANGE!  Every heartbreaking experience (chemo, surgery, radiation, etc.) has been in this community.  Owning a business like a dance studio nails you to one spot.  With the studio I couldn't move on even if I wanted to.  And I can't help but be reminded of all the negative stuff that has happened.  I would like to someday be happy or even just okay.

I could go on and on about all the reasons why I decided to sell the studio.  But it wouldn't change the fact I let go of my lifelong dream and that is just depressing.  How many people honestly train their entire lives for their job?   My stupid ongoing health issues forced me to cut my loses and move on.  And I still feel sad about how everything worked out.  I loved teaching and dancing.  I miss it.  I am hoping that someday I will be okay with my decision, but currently I feel defeated. 

Ostomates Food Reference Chart

I was given this Ostomates Food Reference Chart in the hospital.  I thought it was helpful, so I am going to share it with you all.  Honestly I wish this would have been given to me a year ago when I first got my ostomy, because I have found it helpful. 

This is for individuals who have had ostomy surgery, it is is important to know the effects of various foods on ileal output.  The effects may vary with the remaining portion of functiong bowel.  Listed below are some general guidelines of the effects of foods after ostomy surgery.  Use trial and error to determine your individual tolerance.  Do not be afraid to try foods that you like, just try small amounts. 

Stoma Obstructive

Apple Peels
Cabbage, raw
Celery
Chinese vegatables
Corn, whole kernel
Coconuts
Dried fruit
Mushrooms
Oranges
Nuts
Pineapple
Popcorn
Seeds

Gas Producing

Alcoholic bev.
Beans
Soy
Cabbage
Carbonated bev.
Cauliflower
Cucumbers
Dairy products
Chewing gum
Milk
Nuts
Onions
Radishes

Odor Producing

Asparagus
Baked Beans
Broccoli
Cabbage
Cod liver oil
Eggs
Fish
Garlic
Onions
Peanut Butter
Some Vitamins
Strong Cheese

Color Changes

Asparagus
Beets
Food colors
Iron Pills
Licorice
Red Jello
Strawberries
Tomato Sauces

Constipation Relief

Coffee, warm/hot
Cooked fruits
Cooked vegetables
Fresh fruits
Fruit Juices
Water
Any warm or hot beverage

Increased Stools

Alcoholic bev.
Whole grains
Bran cereals
Cooked Cabbage
Fresh Fruits
Greens, leafy
Milk
Prunes
Raisins
Raw vegetables
Spices

Odor Control

Buttermilk
Cranberry juice
Orange juice
Parsley
Tomato juice
Yogurt

Diarrhea Control

Applesauce
Bananas
Boiled Rice
Peanut Butter
Pectin Supplement (fiber)
Tapioca
Toast

J-Pouch Surgery

I finally had the J-Pouch Surgery!

         It wasn't nearly has painful as I expected it to be.  My doctors did a good job managing my pain.  I was in the hospital for 6 days.  It was still an uphill battle. 

These are the things that I struggled the most with.

1.) Because the surgery is done lower in the abdomen, it can cause a lot of swelling in the blatter.  So I had a catheter in for 4 days.  It was actually quite painful the last couple of days.  I have had catheters in for other surgeries and it was removed once I woke up, so I wasn't prepared for the discomfort that 4 days of having a tube rubbing my urethra raw would cause.  And of course they made me walk (waddle) 3 to 5 times per day with that thing in to prevent blood clots.  This only made matters worse.  I'm sure the sight of me wondering down the halls was a spectacle to behold.  I had many other tubes coming out of me as well (IV, drain, and catheter) so it was a team effort. 

2.) Another unexpected surprise came at the realization of finding another tube coming out of my abdomen, a drain pump.  According to my surgeon some people are more oozy than others.  So not everyone needs one, and they didn't tell me this going in because they didn't know if I would need a drain.  So we had that in for about 4 days.  And yea it hurt like hell when they yanked it out.  At least that pain was temporary. 

3.) Starvation City!  I knew that this would be part of the fun, but knowledge doesn't make things anything easier.  One day prior to having the surgery I was put on a liquid diet.  The day of the surgery I wasn't allowed to eat or drink anything.  The next 2 days was a ice cube only diet.  Then clear liquids for 1 day (brooth, juice, jello).  Next full liquids for a day (soup, pudding, oatmeal).  Then low residue and soft foods for a couple of weeks (nothing that you can't cut with a fork, no raw fruits or veggies).  Now we are finally on a regular diet but I've been advised to go slow, to prevent blockages.  Ugh.   I lost 10 pounds the week prior to the surgery. 

4.) Fatigue........I am 3 weeks out from the surgery and I still get worn out easily.  I'm not in a whole lot of pain, I stopped taking the pain killers after 2-3 days of getting home from the hospital.  The only time I really feel the incision pain is when I cough or sneeze.  I just find that doing things like going for a walk or grocery shopping wears me out.  I'm not suppose to lift anything over 10 pounds.  So that is a challenge.    

5.) Incision locations.  My surgeon told me that she planned to go though the same spots that she originally went through for my first Ileostomy surgery.  (I had it done laproscopically, so I have 4 small scars).  Because I am smaller they couldn't see well enough so they ended up having to go in through different spots, thus creating 4 more scars in places that aren't exactly convenient for having an ostomy bag.  Yep I have one right by my ostomy, so it is no longer a even surface which makes keeping an appliance on more challenging.

6.) Change in bowel.  Due to how they configure the j-pouch, the ostomy is placed high upstream.  Which makes my output more watery.  So dehydration is going to be a ongoing concern.

My doctors thought the surgery went well.  The j-pouch is air tight, so now we just have to wait the 3 months for everything to heal.  Then it is on to the take down surgery.  After going through all this.....I hope that the j-pouch works out well for me.  Anyways, I am just happy to have this behind me.  Onward and upward. 

Compression Sleeve Fitting

Lymphedema Management

What is Lymphedema?  It is a condition in which fluid is retained by the lymph noids and causes swelling in your arms.  One of the side affects of have a lymphoid dissection and radiation is lymphedema.  I'm at a %30 risk that this condition may happen since I had both surgery and radiation.  So my doctors are keeping an eye on it.  I go in every 3 month to get measured to make sure that my arm isn't swelling.

I just got fitted for my compression sleeve.  I have to wear this an hour before I fly, on the plane, and an hour after the flight.  The pressurization of the airplane can cause a flare up.  So the sleeve will help prevent that from occurring. 

A few other suggestions by my nurse to prevent lymphedema from occuring.

Wear gloves when gardening
No tattoes on the side of Lymph noid dissection (my left side)
No blood pressure, IV's, or shots taken on on the side of lymph noid dissection (my left side)
Prevent infections and skin cracking by keeping skin clean and moisturized
No strenous lifting or exercising without wearing the compression sleeve

Post Radiation

I'M FINALLY FINISHED WITH RADIATION!  YAY! 

Really thankful to put this part of treatment behind me.  Going in every day for 6 weeks wasn't fun.  The last 5 rounds of radiation was pretty darn painful.  I'm burned, pealing, and blistering.  My skin is in the process of healing right now as we speak.  I am putting Silver Sulfadiazine Cream and Aquaphor ointment on it two times per day.  And that seams to be helping.  The doctors told me that it might take 2 to 3 weeks for everything to fully heal up and regain my energy back.  I really can't complain too much, as I didn't have any problems until the very end. 

Currently, I am trying to decide what to do with reconstruction surgery.  I am fairly confused to weather or not I want this to happen.  I have a couple of doctors appointments to find out more about it, so hopefully I'll get some answers then.  Other than that I am just trying to enjoy the spring. 

Thanks for reading! 

Radiation

Even though I am officially cancer free, my doctors thought that it would be a good idea to do radiation to decrease my risk of reoccurrence.  In my case radiation reduces the risk of reoccurrence by 2/3, which is a huge deal to me.  So I am officially doing radiation, and I am currently in the middle of it.  My prescription is for 30 treatments, I go in every day Monday through Friday for 30 rounds. 

So far radiation has been the easiest treatment thus far.  I essentially lay on a table, the techs place me in the exact same spot every time using measurements that they took during a scan/simulation.  I have a couple of very small tattoos along with some marking that are drawn on each time with a sharpie that they use to line everything up.  Once I'm in position the machine comes up and over me, and makes a small sound and then the process repeats a couple of times.  The entire session lasts about 20 minutes.  Piece of cake, compared to chemo or surgery. 

Short term side affects are skin irritation and fatigue.  My side affects have been pretty mild, my skin irritation just looks a bit pink, like I've been out sunbathing topless.  The fatigue isn't bad either, I just go to bed a bit earlier or try to catch a nap.  Those side affects should go away after about 2-3 weeks once treatment is done. 

Long term side affects are bit more unpredictable.  And they have to tell you all the scary horrible things that could go wrong.  Who really wants to hear all this?!  Makes a person think twice about doing radiation.  On me, there isn't any way possible to avoid hitting a small part of my lung.   My doctors assured me that it would be a tiny amount and that I would not notice it.  Ugh!  Also they are going to have to be extremely careful that they don't hit my heart.  This was major negative side affect 20 years ago before 3D images, now it really shouldn't be a problem because they can see exactly where my heart is, so they will be able to avoid it.   My least favorite possible side affect is that there is a small chance that I might incur another type of cancer as a result, of undergoing radiation.  What the What! 

All things considered....... For me, I need to know that I did everything possible to avoid BC coming back.  So hear we are, half way through radiation.  Hopefully this nightmare will be over soon. 

Cancer Free!

Drum roll please....I have big news.  I had a complete pathological response to chemo.  Meaning that the cancer is gone.  I'M CANCER FREE!   There wasn't a cancer cell to be found in either breast or lymph node.  The medical staff at KUMed was really excited because it is really rare to have  such a good response to chemo.  Very few people with stage II breast cancer beat it just with chemotherapy.   This is really good news!   I am in a state of shock, so much so that my doctors, nurses, and cancer care team keep telling me that I am cancer free.  (I may have asked them to do that, because it all I wanted to hear ever since we got the diagnoses.) 

So you might be wondering how my bilateral mastectomy and lymph node dissection went.  Well I am officially two weeks out from the surgery.  Everything went well, and I only had to stay in the hospital over night.  The entire surgery lasted seven hours.  I am still pretty sore and tired. Doing basic things like getting dressed, showering, and reaching up into the cupboard is still a challenge.  

The medication they used to put me under, caused me to be pretty nauseous for awhile.  So they loaded me up on all the anti nauseous meds and then I was fine.  I think I may have had a small reaction to the nerve block, my back is itchy.  For me, the worst part of this surgery was the drains, they were pretty uncomfortable and just plain gross.  So I was really happy to get them taken out, I only had them for a week.  Getting the drains removed wasn't as painful as I thought it would be. Seeing my breast free body was a bit of a shock, but overall my scarring isn't too bad.  My surgeon did an amazing job.  I donated my breast and lymph node to science for cancer research.  It is my hope that my breasts can now do something positive for someone else. 

I will continue the Herceptin treatment every three weeks, so that it completes a full year.  So until next October.  Other than that, we don't really know what the rest of the treatment plan is now.  I am guessing that I'll still have to undergo radiation, as a preventative measure.  If not then I continue on with my GI surgeries.  But we won't know for sure until March 6th, when I have another doctors appointment with a radiologist.  

We'll keep you posted.  Thanks for reading!  Have a great week!  :-)