After much debate about weather or not I should do breast reconstruction, I went for it.
I decided to do the Profunda Artery Perforator Flap (PAP)
This is an exciting alternative to abdominal, back, or buttock tissue flap for reconstruction of a natural looking and soft, shapely breast. The surgery was done by taking tissue and veins from the back of my legs, right under the but crease. That tissue was then shaped to mimic a mastectomy specimen, providing excellent contour and projection. The procedure uses the arterial perforator that run through or beside the abductor magnums muscle to supply blood to the fat and skin in the upper inner and posterior thigh. No muscle is harvested, and the scars in not visible from the front, so it is usually well-concealed.
A large part of doing the surgery is to promote self esteem and heeling. So it was important to me that I not be left with another large scar to look at on regular basis. With the PAP the scar is on my backside and unless I want to look at it, I'll never know it is there.
As a young athletic woman I wanted to have full range of movement for the quality of my life. And another huge benefit of the PAP for me was that no muscle was removed. Unlike the Latissimus Dorsi, TUG, and the DIEP Flap proceedures.
Since I received radiation, implants weren't a great option. And they would need to be replaced every 10 years. I didn't like the sound of that, just needed this whole thing to be done with.
The surgery itself was really long, like 10-12 hours long. And overall it was more painful than I anticipated. Mostly because the large incisions on the back of my legs, and I had to sit on them constantly. Still not able to sleep on side or tummy, so as not to mess up the newly reconstructed breasts. So I am still pretty uncomfortable.
This blog will share the challenges of living with colitis and breast cancer. The goal is to share with others my experience of coping with my daily health struggles while still trying to live my life. I hope by blogging, I can help others in dealing with similar challenges.
Thursday, September 4, 2014
Friday, August 29, 2014
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.
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.
Tuesday, July 15, 2014
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
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
Monday, July 14, 2014
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.
Monday, June 2, 2014
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
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
Tuesday, May 6, 2014
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!
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!
Friday, April 11, 2014
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.
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.
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