Chemo Rounds 4 & 5

Hey all!

Hope everyone is staying nice and warm and cozy during the holidays.  Here in Kansas we've just received a nice layer of ice and snow.  Just in time for Christmas, yay!

On the UC Front........I guess you could say that I am getting into a groove, with this having a ileostomy pouch.  Finally found some products that work, which prevents skin irritations, and essentially helps it be more comfortable.  I still have a bit of fear regarding it coming lose, but I've gotten a bit more comfortable with being out and about.  I've been able to work out and dance again, so that is a huge improvement.

Just a few extra updates.........I've completely done a reorganization of my bathroom......since the ileostomy I have had a ton of supplies to store; paste, barrier remover, barrier wipes, oder blocker, bags, etc.  Since the chemo, I've lost most of my hair, so basically I finally decided to cut my losses and get ride of all the things I no longer needed to make room for all the stuff that I do need.  Bye, Bye, hair dryer, straighter, curling iron, razor, hair ties, bobby pins, brush, head bands, hair spray, etc.  Hello new medical supply bin.  Have I mentioned that I love organization?  I have been sporting lots of fun hats, I do have a wig that I wear so as not to frighten my students, sometimes it is nice to feel like you at least look like a normal human being.   I used to have long thick blond hair, and I do miss it when it especially when it is this cold out.  I now have a red wig, that is a bit wild and fun for me.  Why the heck not?!

Since the ileostomy I'm no longer dealing with malnutrition and dehydration issues so I've also been able to gain some weight back and put away my size 2 clothing.   Which is nice, I am able to wear my usual clothing.  Thank goodness!  :-)

Chemo round 4......The doctors informed me that some patients have experienced some relief from the soreness and aches associated with chemo therapy by taking Claritin.  So we tried it, and much to our surprise it worked, and I felt a bit better.  I still had the usual exhaustion and was a bit nauseous but overall I felt a lot better.  

Chemo round 5......I was originally scheduled for chemo on Wednesday, however the receptionist was confused and basically messed up, so we got a phone call on Tuesday letting us know that we needed to come in on Friday instead.  (I guess it has to be scheduled exactly 3 weeks after the last, ugh.)  I was a bit depressed by this news because it meant that I might be sick for Christmas, usually I feel crumby for a week after receiving chemo.  Also it meant that my family had to reschedule their plans, or that I was going to go alone, thankfully my family is amazing, and we made it work, this way I wasn't all alone going into treatment #5.  We were cheered up when my doctors informed me that they could no longer feel the tumor, this however doesn't mean that it is gone, just that it has shrunk a lot, which is a huge leap in the right direction.  The infusion clinic had Christmas carolers, which lifted everyones spirits as well.

The future......I am expected to have 1 more round of chemo, then we are going to start talking about surgery.  We'll see how this all shakes out.  But for now, we are just going to spend some time with the ones that we love, and try to enjoy the holidays.  Merry Christmas and Happy New Years!

Chemo Rounds 2 & 3

Hey all!

A lot has happened since my last post.  I've had 2 more rounds of chemo.  The last time that I went in, they did a sonogram to see if the chemo was having any impact on the cancer.  And I am happy to report that we received good news.  The tumor that was in my lymph node is gone, and the tumor in my breast has shrunk by half.  The doctors said something that we haven't heard in over a year of sickness and doctor's appointments, that this was the best case scenario happening.  So we are feeling pretty blessed. 

Lately though, the actual treatment has been an all day event.  I go in at 9:00am, and I usually don't get to leave until 8:00pm.   This is mostly because I had a bit of a reaction to one of the medications.  So they gave me some Benadryl and monitored me for awhile.  My next treatment is scheduled for the Friday after Thanksgiving.  Not exactly how I wanted to spend my holiday.  Oh well, at least the treatment is working, which is giving us all some peace of mind.

Have a great Thanksgiving!  :-)

Round One: Chemo Therapy

Hey there!

Well I won't lie to you, the first round of chemo therapy was shitty.  I feel really tired, nauseous, and sore.  Not fun, at all!  The entire process took about 4 hours.  Before receiving chemo, lab work has to be done, then I see my oncologist who basically approves the treatment (depending on how the lab work turns out), finally chemo is given.  I had my own little cubicle with a T.V. and a warm blanket.   My family was able to come with me, which was nice because I was really nervous.  

I hate to admit this, but the scariest part of the entire experience was meeting other cancer patients.  Some were really optimistic, while others sadly informed me that they were terminal.  I tried my darned hardest to not let it get to me, and to be a positive influence in others lives.  I must admit, that the entire experience was pretty heart breaking and shook me up badly.  I am happy to have met some amazing people though, a lot of the patients were really helpful and genuinely tried to give good advice in moving forward with treatment.  

The plan moving forward is to continue chemo and herceptin every 3 weeks, to hopefully shriek the cancerous tumor.  Until then I will try to keep you all updated.  

Peace!

Smart Port Placement

Hey all!

This has been a very busy week for us, so I wanted to update everyone on what is happening.  Aside from my usual allergy shots and home health visits...........  Monday I had an appointment with my surgeon's nurse, to make sure that all my incisions were healing up well from my colectomy.  They all seamed very pleased.  Wednesday I  went for "Chemo Training" at KUMed, and came home with a huge binder full of information. Lots to look through.  They also gave me a few prescriptions filled to help with any nausea that may happen.  They basically informed that the type of chemo I will be getting will cause me to loose all of my hair, everywhere.  I feel that this will be the icing on the cake, I will officially look as awkward as I feel.  I am in the process of trying to make the most of it.  Maybe find some fun wigs, hats, scarfs.  Any suggestions, I really don't have a clue as of where to look?

Today got a smart port!  Everything went very well, and the port is now in and ready for action tomorrow.  The port was put in near my collarbone, right under the skin for easy access.  This will help with getting treatments and future surgeries.  The port will take the place of getting an IV my arm each time I go in.  I have to carry a card with me at all times, to explain to any medical person what type of devise it is and how it works.  It also came with a snazzy bracelet.   It was an outpatient surgery, so I got to come the same day of the procedure and sleep in my own bed.  Amazing!  Only problem is that I am a bit sore and uncomfortable, so I am unable to sleep.  Our hope is that, this will help make all future treatments a little bit easier.

Tomorrow I get my first round of chemo and another round of herceptin.  The whole process will take about 8 hours, if we're lucky.   I am schedule to do 6 rounds of chemo each spaced 3 weeks apart, and herceptin for a entire year, each spaced 3 weeks apart as well.  I am pretty nervous for tomorrow, as I'm not sure how much nausea I will experience.  Also there is a risk of having an allergic reaction.  Chemo is made from trees, and some people are deathly allergic to it.  Because of this, they prescribed me steroids to take the day before treatment, the day of treatment, and the day after treatment.  Which is another reason why I can't sleep, I am wired, even with my sleeping medications.  Grrrrr!

So if you are reading this please keep us in your thoughts and prayers. 

Total Colectomy

Dear bloggers,

So a lot as happened since my last post..........turns out fighting cancer is a full time job.  I have had to quite teaching at my studio.  On any given day I could have 3 to 5 doctors appointments or procedures scheduled.  I feel heart broken, I miss dancing.  I really do enjoy working with people and being active, which is no longer a possibility.  So I am working as the director and manager from home.  When I feel up for it I watch classes and make sure everything is processing they way it is suppose to.  I have hired an amazing staff and they are doing an exceptional job.

On the cancer front.......

We got the Brian Scan test results back, they were negative, which is great news, the cancer hasn't spread yet.  Also we got the Petscan back and it shows the cancer is limited to my breast and lymph nodes.  We also received the genetic test results as well, and it was negative, which means I get to keep my overies.  And my sister and mom can breath easy.

We got a second opinion from a better oncologist, so the game plan for kicking cancers butt has changed.  Instead of having my breast removed first, we had my colon removed, thus curing my UC.  I had the surgery done laparoscopically, which I highly recommend doing.  This way you aren't left with a huge incision and are able to heal faster.  There are only a few doctors that are able to do this, so do your research.

Having an illostomy has been quite the adjustment.  It has only been a week sense the surgery and I am still healing.  This is going to be quite the process of figuring out how to live my life with a bag.  Finding outfits that make me look normal is a challenge.  I have a small frame so a bag isn't easily concealed, sigh!  I ordered some wraps and underwear from this website https://www.ostomysecrets.com and they seam to help, I just got them in today and they are good quality products.  The only problem is that they are kind of expensive.  I also have a home health nurse and a nutritionist that are a big help.  I am struggling with dehydration, which is a common problem with people who don't have a colon.  So I am doing my best to keep fluid intake up.  Loads of water, tea, popsicles, and jello.

Having my colon removed will allow us to start chemo and herceptin, these drugs will hopefully shriek the tumor thus making it easier to remove.  After the six rounds of chemo (each 3 weeks a part) I will be able to have my breast cancer removed surgically.  After that we will decide if more treatment is necessary.  Once I am cancer free I will be able to have the j-pouch surgeries, and get rid of the bag.  These are all depending on how everything goes, so the plan may change over time.  And we'll keep you posted.

If you are out there please keep the prayers coming.  We so appreciate it.  Sending love to all of you!

Breast Cancer

This is going to be an depressing post.  I've just been diagnosed with Breast Cancer.  We honestly didn't see this coming, and are in a state of shock.  I was going in to talk to my OBGYN about the possibility of starting to try to have children.  She noticed that my left breast felt slightly different from the other, and sent me to get a mammogram and sonogram.  Both of these tests showed abnormal cells, so then they did a biopsy of my left breast.  Which came back positive for cancer.  The kind of cancer that I have doesn't respond to hormone replacement surgery and is pretty aggressive.

I am doing some genetic testing done to see if I will need to have my ovaries removed as well.  I had a MRI done, and it showed some abnormal cells on my right breast.  I also had a MRI done of my brain, haven't gotten those reports back yet.  Tomorrow I am having a PET/CT scan done.  Also I am meeting another oncologist for a second opinion.  And to top the day off, I am having a biopsy done on my right breast as well.  For the record breast biopsy aren't fun, they are rather painful.  Really not looking forward to tomorrow. 

Normally a person in my position would start chemo immediately to try to shriek the tumor, however with all my UC problems they don't think that it would be a good idea.  I guess chemo gives regular people GI issues let alone someone with my history.  So we are going to have my breast removed first and then I will have my colon removed after I recover from the first surgery.  Shortly after that chemo and possibly radiation. 

I have an awesome team of doctors working on my health.  They are optimistic that I will survive all this, because they think we caught it fairly early.  However we will know more as the test results come in.  This whole process is very difficult, and my head is spinning, and I feel exhausted all the time.  I am trying really hard to keep a positive attitude.  Some days are more difficult than others.  I keep telling myself one day at a time.  Xanax is my new friend.  So if anyone is out there reading this, please keep me in your thoughts and prayers.  Thanks!

My Physical

Yay!  I am officially off the Prednisone! And doing well overall.  I've gained back 15#'s of the 30#'s I losted.  My hubby and I went to Vail Colorado for a family vacation.  After spending too much time in the hospital the past year it was just what we needed.  Adventure!  We went white water rafting, hiking, swimming, horse back riding, and enjoyed seeing the beautiful Rocky Mountains.  Also we celebrated my 29th Birthday!

Hi ho hi ho it's back to work I go.  This is a exciting time of year at the studio.  We are gearing up for classes to start back up.  So that means enrollment, open house, teacher training, restocking the dancewear store, etc.  A fresh start for a new year!  Awesome!

With all this going on I figured the last thing I needed was my allergies to start bothering me this fall.  I'm basically allergic to everything!  Soooooo I decided to start taking my allergy shots again.  (I had stopped earlier this year because my UC flare was taking up all my time and energy, I just couldn't bring myself to do weekly shots and doctors appointments while I was feeling so crummy) Apart of the problem with the shots was that the medical clinic I went to get them at was an hour away from my home.  So I decided to have them mail the shots closer to me.  Apparently to get shots at my hometown doctors office, I had to be an established patient.  Literally rolling my eyes right now!  So I got a physical, and some lab work done.  Guess what, on top of everything else I am hypoglycemic.

My doctor told me that basically my blood sugar level is really low.  And I should eat snacks through out the day to help.  Also he suggested eating apples and fruit, because they are difficult to digest and release sugar throughout the day.  I had to contain my laughter, because it just isn't an option for me to eat these things without becoming deathly ill.  I am still avoiding eating dairy, sugar, and most raw fruits and vegetables because it bothers my UC.  I maintain a low fiber diet, and it works for me.  It sucks, but it keeps the UC in check.  So for now I am just snacking on crackers and apple sauce.  We'll see how this hypoglycemia unfolds.  Hopefully this doesn't develop into diabetes!  Keeping my figures crossed! 

Also I am anemia still!  I am even taking iron supplements.  So that was a bit frustrating.  I guess it just takes awhile for your body to heal after being flared up for the better part of a year. 

Prednisone

Hey all!  Well I am happy to say that I am currently doing alright.  I am tapering off of Prednisone, I am down to only 20mg.  I am a bit fearful that I will flare back up especially since in the past year every time I get lower than 20mg of Prednisone I flare back up.  So we will see how this goes.  Biggest complaints about weaning off Prednisone;

• Hair loss (my hair has started to thin out, as a result I got a fancy new really short hair cut)
• Hormons (I seam to cry a lot more over dumb things, I'll be watching SYTYCD and I'll get emotional.)
• Shakiness (My hands shake the first two-three days I go down by 5mg on the Prednisone, just like a regular drug addict. Awesome!)
• Loss of Sleep (I usually I am unable to sleep the first couple of days of being on a lower dosage)
• Hot Flashes (Sometimes I get hot flashes, sexy I know)
• Exhaustion (I feel tired all the time)

Hopefully the next 4 weeks of tapering off the Prednisone go well.  Wish me luck!  I thought I would also share this article of FMT that was in the New York Times.  I can honestly say that it is a good read.  And that I think the FMT is the reason why I am doing so well now, it works!

http://opinionator.blogs.nytimes.com/2013/07/06/why-i-donated-my-stool/

How to do Fecal Transplant at home!

This video shows you how to do a fecal transplant at home!

Fecal Transplant Therapy! (FMT)

Have you all heard about Fecal Transplant Therapy to cure UC?  Check it out!  Would you try it?





Unfortunately this procedure hasn't been approved by the FDA yet, so it may take a few years for it to be available in the U.S.

Diet

 Great news!  I am finally out of the hospital and have been for about a week.  I am still experiencing some UC symptoms, but it isn't as bad as before.  I am constantly afraid that it will take a turn for the worse again........especially since it is a super stressful time of year at the studio.  (3 weeks until the recital! OMG! So much stuff to do!)  If my symptoms flare again, I'll most-likely have the surgery.  So lets hope I can survive for a bit longer! 

Enough about me......let talk about Diet!   This is something that all of us with UC struggle with.  What the heck are we suppose to eat?  I've had many doctors tell me that diet doesn't matter.  Which sometimes can be pretty frustrating to hear when your struggling to gain necessary nutrients.  Each time I have been in the hospital my lab work came back terrible because I had gotten so sick that I wasn't able to absorb the food I ate.  At times I am almost afraid of food, and I'm sure I'm not the only one out there that feels the same way. 

I have tried every diet imaginable; SCD, Paleo, Atkins, Vegan, Vegetarian, etc.  And I can honestly say that none of them worked for me.  The SCD Diet almost killed me.  I lost 30 pounds on it, and the bleeding actually got much worse.  I stuck with it for 3 months because it's big claim is that you'll go through a detox phase where you'll feel worse before you get better.   Oh I felt worse for sure, I was miserable.  I don't recommend this diet to anyone with IBD.

While I was in the hospital I talked to a really good Nutritionist.  And she gave me some great pointers that I thought I would share with you all because this is the best information I've received regarding diet for Inflammatory Bowel Disease.  It has helped me out, and hopefully it will be beneficial to you as well. 

✔Diet Tips and Suggestions!

• Eat small meals or snacks every 3 to 4 hours
• When you have symptoms, stick to the foods in the recommended foods outline below.  These foods are lower in fiber.  When diarrhea decreases, you many have small amounts of whole grain foods and higher-fiber fruits and vegetables.  Try them one at a time.  If you have abdominal pain or diarrhea, then stop eating the new food.  You can try it again at a later date.
• Drink enough fluids to prevent dehydration.  Aim for a least 8 cups of fluid each day.
• Eat foods that have added probiotics and prebiotics.  
• Use a multivitamin.  You may need more of some vitamins and minerals than you do when you are healthy.  (I also take a calcium supplement as well.)
• During periods when you don't have symptoms, include whole grains and a variety of fruits and vegetables in your eating plan.  Start new foods one at a time, in small amounts.  

 ✎ Proteins Recommended Foods

• Tender and well-cooked lean meats; poultry, pork, fish, eggs, and soy prepared without added fat.

✎Dairy Recommended Foods

• Evaporated, skim, powdered or low-fat milk
• Smooth, nonfat or low-fat yogurt
• Low-fat cheeses
• Sherbet

 ✎Grains Recommended Foods

• Choose grain foods with less than 2 grams of fiber per serving. (White rice, Bread, bagels, rolls, cereals, and pasta made from white or refined flour)  

✎Vegetables

•  Most well-cooked vegetables without seeds.  
• Potatoes without skin
• Strained vegetable juice
• VEGETABLES NOT RECOMMENDED!  (Beets, broccoli, Brussels sprouts, cabbage and sauerkraut, cauliflower, corn, lima beans, mushrooms, okra, onions, peppers, parsnips, potato skins, spinach, winter squash, turnip, and collards.)

✎Fruits

• Fruit juice without pulp (except prune juice)
• Ripe banana or melons
• Most canned, soft fruits
• Choose canned fruit in juice or light syrup.  Heavy syrup has lots of sugar, which may make diarrhea worse.
• FRUITS NOT RECOMMENDED! (All raw fruits except ripe bananas and melon, canned berries, canned cherries, dried fruits including raisins, prune juice)

✎Fats and Oils

•  Limit fats and oils to less than 8 teaspoons per day.

✎Beverages

•  Drinking beverages with sugar or corn syrup may make diarrhea worse for some people.  Very sweet juices may also have this effect.
• Water, Decaffeinated coffee, caffeine-free tea, soft drinks without caffeine, rehydration beverages. 
• BEVERAGES NOT RECOMMENDED! Beverage with caffeine, such as coffee, tea, cola, some sport drinks, alcoholic drinks.  Avoid sweet fruit juices and soft drinks or other beverages made with sugar or corn syrup if they make diarrhea worse. 

✎Other

•  Sugar alcohols (sorbitol, mannitol, xylitol) cause diarrhea in some people.  These ingredients are often found in sugarless gums and candies, as well as some medications.  

Good luck and happy eating!!!  :)

Remicade- A Love Hate Relationship!

Hello peps!

Here is my latest health update!  Unfortunately I am still in the hospital.  I've been here for 11 days now.  Who counting?  Yesterday we did another Remicade treatment.  I had received 2 Remicade treatments before I was hospitalized in February with pneumonia.  We momentarily stopped the Remicade treatments because this drug suppresses your immune system and my doctors felt that it needed to be done, so that I could recover from the pneumonia.  Once I got better from the pneumonia, I broke out with these huge painful blisters on my hands.  Which turned out to be herpes (the coldsore kind, not the STD) I am pretty sure I got it just from being in the hospital, grrr!  So again, Remicade treatment was put on hold so my immune system could battle the herpes.  Which made me very nervous at the time because I had experienced some releif from my UC, and we credited this to the Remicade treatments.

For those of who you aren't familiar with Remicade, the drug can take up to 3 treatments to work (when you are in the middle of a horrible flare this can seam like an eternity).  You do what is called an induction round to get started.  This consists of one treatment, then 2 weeks later another one, then 4 weeks later another one, then 6 weeks later, then they eventually go to every 8 weeks.  The drug is administered through an IV and takes about 2 hours to infuse.  I originally put off doing this drug because off all the horrible side affects listed, plus we knew that we wanted to start a family and my OBGYN didn't think that this would be a good drug to be on during pregnancy.  However after being in a flare for 9 months we got to the point that were willing to try anything.  Not that this is sound reasoning but all medications have risks and side affects even Tylenol says that it can cause cancer or death, if you read through all the fine print.  Anyways here is the link for more information about Remicade www.remicade.com (I always encourage everyone to do their own research for making any decisions.)

Back to the story.  Shortly after getting over the herpes break out, I flared back up.   So we did another Remicade treatment that was about a month ago.  However it takes up to 3 for it to work, and since I had stopped treatment before getting the full induction round, we weren't really sure if the Remicade ever worked in the first place or if it ever had enough time to fully build up in my system.  Recently, I haven't been responding to medications, so they sent me to the ER and I have been living at the hospital ever since.  Yesterday my doctors decided to start the Remicade induction process all over again, and I received another treatment.  This is basically a last effort to save my colon.  If this doesn't work I'll go to surgery.  So we are hoping for the best. 

 My doctors don't seam to know an exact day that I will be released yet.  I am being closely monitored, and I believe I am getting the best care possible.  However I am starting to get home sick, and not knowing when I'll be released is starting to wear on me.  I own a dance studio, and this time of year is crazy busy for us.  We have a dance competition next weekend, and a recital right around the corner.  My husband, family, and staff have been super wonderful to me during this difficult time.  They are pretty much running the studio at this point.  My clients have been really supportive, however I have this fear of losing the business to this horrible disease because I honestly am unable to work.  Bottom line, I need to get better! 

Organization

For those of you who don't know me, I am OCD when it comes to organization.  I am one of those people that actually get excited to label and color code projects.  I know I'm a big dork!

When you have UC, it is vital to your health to be able to keep track of all the medications you are taking, your diet, how many BM's per day you are having, when your last period was, ect.  It gets to be a bit much at times.  I used to literally carry a binder with me that had all my health care information in it.

Which is why I wanted to share that I found this handy new app. called GI Buddy.  Best part about it is that is free.  It is also small and much more portable than a heavy bulky binder.  (Just don't lose your phone.)  The app allows you to track all your medications, symptoms, log the foods you eat, monitor your overall well being, log your exercise routine, it even generates reports to help you see trends in your IBD, and more!  I have only used it for a couple of days, and I am already finding it really helpful.

Now this one is just for the ladies out there!  Another app that I find helpful is P.D. (Period Diary).   It is fully animated app with a cute design.  It comes complete with a calendar that tracks your period, ovulation, moods, symptoms, and more.  It even predicts your future periods which can help you make plans.  Who wants to schedule a beach vacation during the middle of their period?  This is another free app.

I hope you find these tools as helpful as I have.  Have a wonderful day!  :)

Mother's Day in the hospital!

  Today is Mother's Day, I was hoping that by now that I would have my own little bundle of joy, someone to call me mom.  However last September my Ulcerative Colitis flared up and we've never gotten it under control.  My doctors have informed us that we should wait until we get this current flare under control before we start trying to have a family.  However, since September I have gotten progressively worse.  I was admitted again to the hospital last Tuesday, I am currently receiving IV Prednisone, fluids, iron, potassium, Vicodin, and my usual drugs (Imuran, Lilada, Rowassa, Remicade, Probiatics, Birth control, etc.)  Yeah I know that is a lot to swallow literally.  None of it seems to be helping.
We are in the beginning stages of considering surgery.  I like the thought of a cure, but am well aware that their is always a chance for complications.  I just want my life back.  Since being dianosed with UC, I've had pneumonia and herpies (cold sores not the STD kind) all because of the immunosuppressant treatment that I have received up to this point.   I had my 4th colonoscopy yesterday (not a fun day), we'll meet with a surgeon later on next week to talk about what our best options are.  We understand that if we have the surgery we may not be able to have children on our own, however we are unable to currently have kids as is.  We are keeping an open mind, if we have to adopt then so be it.

We are hoping and praying that we are on the right path.  I'll do my best to post our journey and anything that we find helpful along the way.