Good bye Ostomy!
I am going to walk you by each day by day progression.
Day 0 - Prepare for surgery. Liquid diet, NPO after midnight. Pack bags, remove nail polish, find our dog a sitter.
Day 1- Illeostomy Take Down. Woke up early and headed to the hospital. Surgery took about 90 minutes. Pain was manageable and controlled with dilaudid. Diet consisted of ice cubes. Once gas or BM happens the diet will progress back to clear liquids.
Day 2- One Day after Illeostomy Take Down. Was given antibiotics and probiotics to clear up pouchitis. Both of these drugs made me sick. No surprise, these medicine shouldn't be taken on a empty stomach. Threw up 3 times, it wasn't pretty. Eventually, I passed some gas. Then my surgeon came in and advanced my diet to clear liquids.
Day 3- Two Days after Illeostomy Take Down. Was given different antibiotics and probiotics. Finally the nausea went away. My doctor came in and removed the baid aid so I could see the sight where the ostomy was, and it looks pretty good. My surgeon thinks that I will go home on Thursday if all goes well. Diet was promoted to full liquids.
Day 4 - Three Days after Illeostomy Take Down. Was promoted to low fiber foods. And Discharged from the hospital. Homeward bound.
2-Weeks after Illeostomy Take Down. The ostomy sight is starting to scab over and heel. The pouch is working, I am going 8-10 times per day and 2 times at night. I am feeling some pretty intense urgency which is a bit frustrating. I hope that all this improves. Haven't had much issues with butt burn, but I use calmoseptine as a preventive measure and I also have a bidet. Still on a low fiber diet. Overall I feel happy to be without the ostomy bag. I am now wearing jeans again, and in general I am much more comfortable.
Monday, October 20, 2014
Friday, September 26, 2014
Last Herceptin Treatment
Today was my last Herceptin Treatment!!!!!!
Herceptin is was used to treat the specific kind of cancer I had. Her2negatitive. Herceptin works by killing just the cancer cells, so it doesn't have all the mean side affects of chemo. However it is still a infusion and I received it every 3 weeks. It usually made me tired though. Maybe it is just the stress of having to been at the cancer infusion center. So I am happy to not have to go through that ordeal anymore. Yay, one more thing off the medical check list! :-)
Herceptin is was used to treat the specific kind of cancer I had. Her2negatitive. Herceptin works by killing just the cancer cells, so it doesn't have all the mean side affects of chemo. However it is still a infusion and I received it every 3 weeks. It usually made me tired though. Maybe it is just the stress of having to been at the cancer infusion center. So I am happy to not have to go through that ordeal anymore. Yay, one more thing off the medical check list! :-)
Thursday, September 25, 2014
Pouch O' Gram & Flex Scope
Yesterday had to run some tests on my J-Pouch to see if everything was healed up properly. This way, I can move onto the third and hopefully final stage of the j-pouch.
I had my Pouch O' Gram at 9:00 AM which was good, because I couldn't eat or drink anything after midnight the night before. So the Pouch O Gram involves inserting a small tube into the stoma and injecting die (iodine) into the j-pouch and then taking an e-ray. By doing this, they can see if the j-pouch is water tight. It felt more uncomfortable than I imagined it would, but it wasn't unbearable. I brought extra ostomy supplies with me, because they had to remove the bag to run this test.
The Flex Scope was shortly after. This test involved inserting a small camera rectally to see the inside of the j-pouch. My j-pouch was really inflamed. Which I am worried about, I've been having some bleeding for awhile now. When I notified my surgeon about this she thought the pouch was just healing or that I was having a UC flare (I guess they leave a small part of the colon so they can reconnect everything, and that part can still become inflamed.) Turns out I have a case of pouchitis. There really isn't a known cause of pouchitis. I am on antibiotics to try to clear it up. So we will see how all that goes. Anyways another thing they do in the flex scope, is blow air in the j-pouch to make sure it is air tight. I passed this portion of the test as well.
So my surgery is tentatively schedule to happen in a couple of weeks depending on my pouchitis clearing up. Keeping my figures crossed. Although I am so nervous for the 3rd portion, that I am okay putting it off for a bit.
I had my Pouch O' Gram at 9:00 AM which was good, because I couldn't eat or drink anything after midnight the night before. So the Pouch O Gram involves inserting a small tube into the stoma and injecting die (iodine) into the j-pouch and then taking an e-ray. By doing this, they can see if the j-pouch is water tight. It felt more uncomfortable than I imagined it would, but it wasn't unbearable. I brought extra ostomy supplies with me, because they had to remove the bag to run this test.
The Flex Scope was shortly after. This test involved inserting a small camera rectally to see the inside of the j-pouch. My j-pouch was really inflamed. Which I am worried about, I've been having some bleeding for awhile now. When I notified my surgeon about this she thought the pouch was just healing or that I was having a UC flare (I guess they leave a small part of the colon so they can reconnect everything, and that part can still become inflamed.) Turns out I have a case of pouchitis. There really isn't a known cause of pouchitis. I am on antibiotics to try to clear it up. So we will see how all that goes. Anyways another thing they do in the flex scope, is blow air in the j-pouch to make sure it is air tight. I passed this portion of the test as well.
So my surgery is tentatively schedule to happen in a couple of weeks depending on my pouchitis clearing up. Keeping my figures crossed. Although I am so nervous for the 3rd portion, that I am okay putting it off for a bit.
Tuesday, September 23, 2014
Complication with Reconstruction
Exactly 10 days after my breast reconstruction surgery I had a major complication...........
I noticed a bit of a bruise on lefty, didn't think about it much and went to bed. In the morning my entire left breast was black, blue, and purple. I called my surgeon straight away, and she informed me that I needed to come into the hospital right away. I was freaking out majorly and was an emotional wreck.
Turns out that one of my veins that they connected the new tissue with had collapsed. This was a major problem. I was to be what my surgeon called, "sat on" for a couple of days to determine a course of action. What does this mean?
I was to be observed in the hospital. If things got worse, I would need emergency surgery. And I would lose lefty once again. They gave me blood thinners, to clear up the clots. Luckily my surgeon used two veins, she informed that some only use one vein, had that been the case I wouldn't have been able to keep my left breast. I was informed that it is actually really rare to have a vein collapse. I was feeling partially depressed, why is it always me?! Lefty actually tried to kill me again, what a trouble maker.
The blood thinners seamed to help, after a couple of days the bruising improved. And I got to return home from the hospital. However the flap started to shrink and therefore opened up around my incisions. So I have a large wound that I am taking care of. Keeping it clean by doing wet to dry, twice per day. Which basically involves putting gauze on after I shower, and then letting the gauze fall off in the shower. Seams to be working. It starting to close up, just taking it's time.
I am super happy I got to keep lefty.
I noticed a bit of a bruise on lefty, didn't think about it much and went to bed. In the morning my entire left breast was black, blue, and purple. I called my surgeon straight away, and she informed me that I needed to come into the hospital right away. I was freaking out majorly and was an emotional wreck.
Turns out that one of my veins that they connected the new tissue with had collapsed. This was a major problem. I was to be what my surgeon called, "sat on" for a couple of days to determine a course of action. What does this mean?
I was to be observed in the hospital. If things got worse, I would need emergency surgery. And I would lose lefty once again. They gave me blood thinners, to clear up the clots. Luckily my surgeon used two veins, she informed that some only use one vein, had that been the case I wouldn't have been able to keep my left breast. I was informed that it is actually really rare to have a vein collapse. I was feeling partially depressed, why is it always me?! Lefty actually tried to kill me again, what a trouble maker.
The blood thinners seamed to help, after a couple of days the bruising improved. And I got to return home from the hospital. However the flap started to shrink and therefore opened up around my incisions. So I have a large wound that I am taking care of. Keeping it clean by doing wet to dry, twice per day. Which basically involves putting gauze on after I shower, and then letting the gauze fall off in the shower. Seams to be working. It starting to close up, just taking it's time.
I am super happy I got to keep lefty.
Thursday, September 4, 2014
Breast Reconstruction-Part 1
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.
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.
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.
Saturday, February 22, 2014
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! :-)
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! :-)
Monday, February 10, 2014
Packing for Masectomy
What to bring with you to the hospital?
1.) Clothing...........If your appointment is in the morning, don't bother with bringing many extra clothing items. Think about it, you will check in and put on a gown right away. The gown is what you'll wear for the duration of your stay. I plan on wearing the same clothing I wore coming to the hospital on my way home. I will of course bring some clean undies and socks though. I am planning on wearing sweats, and a zip down; this way if it is painful to lift my arms I'll be able to put that on rather easily.
2.) Toiletries..........Tooth brush, tooth paste, and face wash.......The hospital will have soap, shampoo, hand sanitizer, etc. And depending on how everything goes they may or may not let you shower the first couple of days anyways). No make-up or lotion they don't want you to wear it going into the surgery anyways.
3.) Hat or wig if you prefer. Brush or comb if you have hair.
4.) Any medications you take on a daily basis.
5.) Your surgical top, if they gave you one. (The cami that has the pockets for the drains)
6.) Entertainment.......I am bringing my laptop, kindle, my cell phone, and some DVD's. (Don't forget the electronic chargers). They say no valuables......but I know I will be more comfortable with these items.
7.) Inspiration........I put together a book by hole punching all the cards my friends and family have sent me. This way I can read them if I am feeling a bit home sick. In previous hospital stays I've also brought photos, to cheer the room up a bit. However I am hopeful that I'll only stay 1-2 nights this time around.
* Quick suggestion, don't bother bringing in your bag to check in, leave it in the car, and have your husband, mom, or other loved one bring it to you once you are in your room and are recovering. This way they don't have to lug it around while they are waiting for you during the surgery.
Here is a picture of my card book, I got this idea from pinterest. I love how it turned out!
If you have any suggestions feel free to contribute your ideas. This is just what friends and family have recommended for me. Hopefully I didn't forget anything major. Alright, its time for me to get ready and ship out. Wish me luck!
1.) Clothing...........If your appointment is in the morning, don't bother with bringing many extra clothing items. Think about it, you will check in and put on a gown right away. The gown is what you'll wear for the duration of your stay. I plan on wearing the same clothing I wore coming to the hospital on my way home. I will of course bring some clean undies and socks though. I am planning on wearing sweats, and a zip down; this way if it is painful to lift my arms I'll be able to put that on rather easily.
2.) Toiletries..........Tooth brush, tooth paste, and face wash.......The hospital will have soap, shampoo, hand sanitizer, etc. And depending on how everything goes they may or may not let you shower the first couple of days anyways). No make-up or lotion they don't want you to wear it going into the surgery anyways.
3.) Hat or wig if you prefer. Brush or comb if you have hair.
4.) Any medications you take on a daily basis.
5.) Your surgical top, if they gave you one. (The cami that has the pockets for the drains)
6.) Entertainment.......I am bringing my laptop, kindle, my cell phone, and some DVD's. (Don't forget the electronic chargers). They say no valuables......but I know I will be more comfortable with these items.
7.) Inspiration........I put together a book by hole punching all the cards my friends and family have sent me. This way I can read them if I am feeling a bit home sick. In previous hospital stays I've also brought photos, to cheer the room up a bit. However I am hopeful that I'll only stay 1-2 nights this time around.
* Quick suggestion, don't bother bringing in your bag to check in, leave it in the car, and have your husband, mom, or other loved one bring it to you once you are in your room and are recovering. This way they don't have to lug it around while they are waiting for you during the surgery.
Here is a picture of my card book, I got this idea from pinterest. I love how it turned out!
If you have any suggestions feel free to contribute your ideas. This is just what friends and family have recommended for me. Hopefully I didn't forget anything major. Alright, its time for me to get ready and ship out. Wish me luck!
Thursday, February 6, 2014
Preparing for Masectomy
Hey blog friends!
So my bilateral skin sparing mastectomy is coming up in 4 days. And I am wicked nervous! Wish me luck. A few of my friends that have gone through this have given me some great suggestions so I thought I would share them with you all. These are in no particular order.
1.) Get a recliner (I borrowed mine). This way you can sleep in it, without putting any pressure on your chest and drains. Also my friend swears that I'll need the movement to help me get up and down. Here is where I'll be hanging out for a couple of weeks. I am hoping to get one more so I can have one in my living room as well, for a change of scenery.
2.) Stay busy. So I've been stocking up on crafting supplies, books, music, magazines, movies, and projects. Not sure how much I'll want to do. But just in case I feel ambitious and really bored then I will have options.
3.) Get a detachable shower sprayer. This way you can shower without submerging the drains and incisions. She even suggested getting a shower bench so I wouldn't have to stand, however those are expensive, so I decided against it. There is only so much you can do. I did however spurge for the shower sprayer. I feel like I'm 80 or so, yicks!
4.) Ask for help, because most household chores, activities, and driving are going to be off limits for awhile. Recovery time is 4 to 6 weeks. So my mom and mother in law are coming and they are going to help with anything and everything.
5.) It was required that I get a post surgical care top. (I guess this is either a new thing.....or not every doctor prescribes it, because my friend wishes she had something like this when she had her mastectomy) You can't tell from the picture, but it has pockets on the inside. This is where I'll put the drains in. I've been told that the drains will stay in for 10-14 days, ugh. Also it has inserts for my prosthetic breasts. Ha! I'm not able to do reconstruction until after the radiation. So I'll be running around boobless for awhile. The reconstruction surgeries are another set of problems for another day. Blah! If you don't get one of these handy tops, my friend said that she purchased a jacket with pockets on the inside, and they helped her.
6.) Stock your house with prepared meals and groceries. It might be awhile before you feel like cooking or shopping. So stock up. (I still need to do this one.)
7.) Take a picture of your chest before the surgery this way you have something to show the plastic surgeon for reconstructive surgeries. I have already had my appointment with my plastic surgeon, but I decided that I would still take a before picture, just in case I decided to switch surgeons later on.
Let me know if you have any suggestions, and I'll be happy to add them. Thanks!
Peace out! :-)
So my bilateral skin sparing mastectomy is coming up in 4 days. And I am wicked nervous! Wish me luck. A few of my friends that have gone through this have given me some great suggestions so I thought I would share them with you all. These are in no particular order.
1.) Get a recliner (I borrowed mine). This way you can sleep in it, without putting any pressure on your chest and drains. Also my friend swears that I'll need the movement to help me get up and down. Here is where I'll be hanging out for a couple of weeks. I am hoping to get one more so I can have one in my living room as well, for a change of scenery.
2.) Stay busy. So I've been stocking up on crafting supplies, books, music, magazines, movies, and projects. Not sure how much I'll want to do. But just in case I feel ambitious and really bored then I will have options.
3.) Get a detachable shower sprayer. This way you can shower without submerging the drains and incisions. She even suggested getting a shower bench so I wouldn't have to stand, however those are expensive, so I decided against it. There is only so much you can do. I did however spurge for the shower sprayer. I feel like I'm 80 or so, yicks!
4.) Ask for help, because most household chores, activities, and driving are going to be off limits for awhile. Recovery time is 4 to 6 weeks. So my mom and mother in law are coming and they are going to help with anything and everything.
5.) It was required that I get a post surgical care top. (I guess this is either a new thing.....or not every doctor prescribes it, because my friend wishes she had something like this when she had her mastectomy) You can't tell from the picture, but it has pockets on the inside. This is where I'll put the drains in. I've been told that the drains will stay in for 10-14 days, ugh. Also it has inserts for my prosthetic breasts. Ha! I'm not able to do reconstruction until after the radiation. So I'll be running around boobless for awhile. The reconstruction surgeries are another set of problems for another day. Blah! If you don't get one of these handy tops, my friend said that she purchased a jacket with pockets on the inside, and they helped her. 6.) Stock your house with prepared meals and groceries. It might be awhile before you feel like cooking or shopping. So stock up. (I still need to do this one.)
7.) Take a picture of your chest before the surgery this way you have something to show the plastic surgeon for reconstructive surgeries. I have already had my appointment with my plastic surgeon, but I decided that I would still take a before picture, just in case I decided to switch surgeons later on.
Let me know if you have any suggestions, and I'll be happy to add them. Thanks!
Peace out! :-)
Friday, January 17, 2014
Like a Lamb to Slaughter
Consider
yourselves warned this is going to be a long and sassy post,
mostly because I can't sleep. But please keep us in your prayers.
I just wanted to let you all know how my meeting with the Breast Surgeon went. I am still processing it all, especially since everything was going so well with the chemo treatments. (I was actually starting to hope and plan on my remission party.......needless to say that all that is going to be put on hold, ugh)
Anyways I am scheduled for a double mastectomy and lymph node dissection for February the 10th, which I am really excited for. I honestly can't wait to have the cancer removed from my body. So all that is good to go. My surgeon came highly recommended to me, and I think she will do an amazing job. I really do like her, she is a impressive woman.
We were told that I would be undergoing radiation shortly afterwards, that was the part we were completely unprepared for. I always knew that it would be a possibility. However, we were under the impression that it was a very small chance and that the decision would be made after the pathology came back from surgery. The phrase "Like a lamb to slaughter" kept coming to my mind. Here I was expecting good news to be had only to find that my battle would not be ending any time soon.
My doctors think that this is the best course of action.....so naturally I am going to suck it up and do it. The radiation is going to act as the insurance policy that this crud never returns. Its basically the just in case chemo didn't get it, and just in case surgery didn't get it, then this will kill whatever may be left behind. And since I'm so young there is always an increased chance that it could return. Her exact words were "You've got a lot more time than someone who is diagnosed with cancer later in life. (Still not sure what to make of that statement....I'm excited to hear that they think I going to be around for awhile.......not real thrilled about the greater risk of occurrence)
Radiation means that I will have to go into the doctors office everyday for 6 to 8 weeks, the exact timeline is still up in the air. I am really not excited about the time commitment that this is going to require. But I am desperately trying to remain positive, I keep telling myself that I am lucky to be able to fight. I've met many terminal cancer patients during my time spent at KU med that would love to be in my shoes. So I am trying my darned hardest not to wine or complain too much, but I won't lie I'm pretty devastated.
This will basically push all my G.I. and reconstructive surgeries back further as well. I should also probably mention that KU med dropped a few major balls. I was suppose to meet with my surgeon half way through my chemo treatment, however that appointment never got scheduled. (They are in charge of scheduling, which drives me nuts.....because everyone knows I would not have made that sort of mistake). So now I am running around like a crazy person meeting with plastic surgeons (the people in charge of giving me nicer boobs than I was born with) I guess they need to see what I am currently working with to formulate some sort of plan for my future breasts. Good luck to them!
Ha! I honestly never in a million years thought I would get a boob job, but here we are. Because of everything else that needs to happen, radiation and GI surgery the reconstruction most-likely won't happen until next fall. This made me giggle slightly...... they thought that telling me I could be fitted for a prosthetic breast would make me feel better about running around boobless for 8 months or so. Prosthetic breast?! I guess it is basically a bra with a silicon implant that I could wear until I'm able to have the surgery. My mind was blown and I didn't really know what to think or how to respond to this suggestion. So I just started laughing, and it was awkward.
Also I am having to meet with the radiologist as well, to get some sort of plan formulated there. Anyways all this is usually done over a couple of months, but because I was somehow forgotten I get the lovely task of doing all this in a matter of weeks. Awesome, I am lucky I have mad organization skills and that I am very familiar with having to jump through a million hoops so as not to become just a number. (AKA 5 years at KU plus owning a business have trained me for maybe the most important task of my life to date.....the mission of hiring the best people so I don't die, no pressure or anything)
However my confidence in their abilities might be wavering slightly. Especially after they informed me that they don't have my images on record, so now I am running around trying to get Menorah (where I was originally diagnosed) to get KU med the test results and the original images and whatever else they need. And yes just in case anyone was wondering the medical world still operates on a fax machines.....aka dinosaur technology. Again not real assuring to me, literally rolling my eyes right now. We have machines that can perform x-rays, administer laproscopic surgeries, scan for cancer, and do things I can't even image....... but no one can copy, scan, and e-mail anything. What......that is crazy to me! They actually asked me to go and pick up my images and bring them to KU med, because they were having a hard time getting the fax.......ummm sure I can do that. Just wondering why I am paying you all so much, if I am doing your job. Yep that is happening.
I have politely expressed my concerns, and they assured me that everything is going well. And that I have some of the best doctors working on my case. Which I really do believe to be true. The scheduling, records, and data collection staff could use some help. I was able to successfully hold my tongue and not volunteer my services in training them to perform basic computer tasks such as e-mail, use a copy machine, program appointments into a software, scan records, etc. All of which I am sure is necessary, but probably would not have been appreciated. So my plan is to suck it up, keep calm, and carry on.
This is what I now picture happening in the office at KU Med
On top of
everything else........my husbands sweet grandma is fading fast. She is in
her 90's and has had a tough year, so we knew this was coming, but it
has still been difficult. We hope that she goes as peacefully as possible. We might be making the trip home soon.
I'll do my best to keep everyone updated, but things are crazy busy over here.Sunday, January 12, 2014
6th and final round of chemo!
I am happy to report that we actually ended up having a good Christmas and New Years. I hosted my family Christmas this year, and shortly afterwards we went to my husbands parents house to visit that side of the family as well. For New Years we went to a friends house, and rang in 2014 by playing some fun games. (This was much improved from last year......where we were in the emergency room, due to all my complications from UC. Couldn't be more pleased to be able to enjoy the holidays with our family and friends.)
Exciting News! Friday, was my last round of chemo! Hopefully for the rest of my life! Everything went rather smoothly. I got my favorite nurse, Jenny. My parents came up and treated me to Oklahoma Joe's for lunch, which is one of Kansas City's best BBQ places.
Slowly the side affects of chemo will wear off, and I will start to feel better. I will have to continue to take Herceptin, every 3 weeks for 12 more times, so this will complete a full year. Herceptin treats the specific type of cancer that I have, and it has very few side affects. I will meet with my oncologist in 6 weeks to make sure that everything is still going as planned.
According to my doctors, the chemo therapy went about as well as they could go. Which brings us to the next course of action.
On Tuesday I am meeting with my Breast Surgeon to discuss Treatment Options such as Lumpectomy or mastectomy. We are expecting the surgery to take place in 3 to 4 months, but we'll know more shortly. I am eager to move onto the next step and put this behind me. However I can't help but feel nervous and scared. I have many questions and I think that is a huge part of my anxiety. I am hoping to get all that taken care of on Tuesday, so we can be confident that we are moving in the right direction.
For the time being I am going to rest up, and try not to worry to much about what the future holds for us.
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