Post 30: I get knocked down...but I get up again!

Waiting in the ER waiting room.
Unfortunately, this ER trip gave us no answers and we ended
up having to drive to Shands in Gainesville shortly after this so
I could be admitted into the hospital.  

Last week was just plain horrible. There's no other way to describe it. There is a happy ending to my story though! I missed the entire week of work because I had to be admitted into Shands Hospital for complications. Phillip and I left Elise with my mom while I was hospitalized. It was so difficult leaving her again, and I found myself crying so much in the hospital because I missed her terribly.

Just to give you a quick run down...... Last week (March 11-16th) I was in and out of two hospitals, had a CT scan, blood cultures, stool samples taken, abdomen X-Rays, more blood tests, a MRI of my abdomen & pelvis, Potassium infusions, countless bags of IV fluids, IV antibiotics, vital signs taken a billion times, met with surgeons, lots of doctors and medical students crowded around me observing the doctors.....let's just say I felt like I was on an episode of "House" with a giant team of doctors, oncologists and surgeons trying to figure out what was wrong with me. Even though the abscess showed up on my CT scan, I still never ran a fever, my blood work never showed an infection either. But I was extremely sick and in a lot of pain. The doctors were baffled and this time they weren't going to let me leave the hospital until we had this problem solved.

To make a long story short, my abscess made me sick. VERY sick. I started feeling ill on March the 10th. Just really under the weather and nauseous......Then the next morning (March 11th) the diarrhea (profuse - like a full ostomy bag every 30-min to an hour) started. I started blacking out and when I would stand up my heart rate would shoot up to 117 bpm. This lasted all day and then the vomiting began. I became severely dehydrated and no medications would even begin to stop it. I was taken to the ER in Valdosta (We were there for 12 hours!!! With no answers!! It was not a good experience, but that is a whole other story) I was given fluids, had a CT scan, and once the doctor saw my completely re-arranged insides on the pictures - I think they were confused and said "I should go see my surgeon". Great.

So I was admitted into Shands in Gainesville until they could figure out why I was so sick and why I was still in excruciating amounts of pain from this abscess.The doctors said they would not discharge me until the diarrhea stopped. After a LOT of IV fluids and IV antibiotics, I am happy to say I began to feel somewhat like a human being again by Friday the16th. I was hooked up to an IV to get continuous fluids for a few days. After the antibiotics kicked in the diarrhea suddenly stopped and my pain went away. This is the first time in almost a year I have not been in some kind of pain. (First time in almost 3 months I have had relief from this abscess.) I am still on oral antibiotics this week, but I was feeling so much better that I was able to go to work all week! I can not start my chemo back until my antibiotics are done. Don't want a reaction like I had the last time. (Described in my last post)

We were happy to finally have some answers as to why I was in so much pain. My oncologist explained to me that my digestive tract was in so much distress from everything (abscess, surgery, antibiotics, chemo, not having a colon doesn't help either!) it was causing severe spasms in my stomach and intestines. When I would have these spasms it would squeeze the abscess causing insane amounts of pain. The vomiting and constant diarrhea was evidently caused by the infection. Chemo can sometimes mask the signs of an infection. I am so happy to be feeling better!!! The antibiotics still make me feel yucky and upset my stomach a bit, but I will take that any day over what I was feeling before. I should be finished with my antibiotics in about a week and then I can start my 4th round of chemo over. I am happy to be home and back together as a family & feeling pretty decent! We missed our baby girl! Elise is doing great. She's trying to learn how to walk and will be 11 months old next week! I'm excited to have a good, pain free weekend with my family!

Post 26: CT scans, half way through round 3 of Chemo, & products I can't live without!

I am happy to say that in a week I will be 1/2 way through my chemotherapy treatments! I will have 3 more rounds after I finish this one.  If I get sick or have hand & foot syndrome my doctors withhold my medication so my immune system can have a chance to work. Hopefully I won't have any delays so it won't take longer to finish a round. I am trying very hard to stay as healthy as I can. Sometimes it's tough staying well when you're a teacher. SO MANY germs at school! But I am just extra careful. I am also trying to learn that I don't need to be so hard on myself when I need a break. I have a hard time asking for help and sometimes I feel like I should just push through. But I am realizing this is not doing me or my family any good. Some of the side effects can get really ugly if you let them go too far. I am lucky I have such a good oncologist that takes these things very seriously and gives me time to heal if I need it.

So far with this round I have not developed any hand or foot issues. Yay! But a strange thing that has happened is my fingerprints are disappearing! I was checking my little girl out of daycare, and they have a fingerprint scanner you have to touch when you come in to pick up your child. When I tried to scan my finger it kept telling me it didn't recognize me in the system! I tried 10 times with no success so they had to check Elise out for me. I read that this could be a side effect. It's a weird one! So I guess this means I can be sneaky and not leave my fingerprints!? :) Just kidding.

To help with my hand & foot syndrome I started using a moisturizer called Udderly Smooth. I was using a different one called Bag Balm, but I felt like it wasn't really helping as much as this one. Some swear by the Bag Balm, but I guess it's just what works for some might not work for others. Udderly Smooth has been awesome for me the past few weeks. I think I will continue using it even after I am done with chemo. It really soaks in your skin and doesn't feel greasy. I don't really love how it smells, but if it helps who cares!



ReliaMed Lubricating
Deodorant. A sanity saver. 

 This is really embarrasing to write about, but I want to post it anyways because I wish I had known about this stuff earlier.(ReliaMed Lubricating Deodorant) I feel like this product is worth a little embarrasment and it is important to post. I just hope I can help even ONE person who might be in this situation. Things like this are really hard to write about because I don't want anyone thinking I am gross or unsanitary.  I hate when people look at my stomach trying to see if they can see my pouch through my clothes. I feel like people might think I am dirty. I know I shouldn't worry about what people think, but that is easier said than done. Having an ostomy bag can be very humbling sometimes. Your small intestine is constantly moving. It has a mind of it's own and you have to empty the ostomy pouch when it gets full. Since you have zero control of when the bag fills up, you end up having to empty it in public places unfortunately. It's not fun, but It's just a part of life for me right now. The problem is when you are in a public restroom.....lets just say the odor that can come out of the pouch is, well..... special. It can be absolutely humiliating and make you not want to leave the house in fear that you will have to empty it in a public restroom. There is not much more embarrasing than coming out of the bathroom stall with someone waiting in line to come in after you. Thankfully  there is a product you can put in the pouch that gets rid of all the odor. I use it every single morning. It kills bacteria and almost completely prevents any odor all day. I was about to run out of  it and I was litterally in tears because I didn't want to go anywhere without having this stuff in my pouch. We had to overnight a couple of bottles. I know this sounds like something so trivial, but when you have a situation that changes the way you live and function, the last thing you need is further embarrassment or even more damage to your self esteem. I am thankful that there are people who are thoughtful and develop products like this to help make life just a little bit easier while living with an ostomy. The weird thing is it is a blue gel. When I first used it I wondered why is it blue!!?? I quickly discovered blue color provides a visual indication of surface coverage. When I put a little bit of the gel in the pouch, I squish it around and I can see that I have the whole inside of the bag covered. Makes sense! I really can't live without this stuff.





This is what my brain felt like yesterday!



I won't lie and say things are easier. But living with an illeostomy has become a "new normal" that I am slowly getting more used to. I still have days when I look at myself and wonder how did I get here? What has happened to me? It's been extremely challenging especially with a 9 month old baby and working full time. But keeping busy keeps my head in a better place and I don't have time to sit and overthink things (which I tend to do.)

 My husband is a saint. He has been absolutely amazing. He litterally does everything at home when I have days I just can't keep going. I can't even begin to express how grateful I am to have this wonderful man in my life. I really don't know how I would make it through this without him. I have some good days and those are the days when I will dress cute and fix my hair. We get out of the house and do as much fun stuff together as a family as we can. I feel like I have to take advantage of these days, because I know they won't last long. Some days are extremely difficult and yesterday was definitely one of the more challenging ones. I have been having MAJOR insomnia for the past few weeks. Maybe getting 1-2 hours of sleep at night. I just lay there trying to keep my eyes shut hoping I will drift off to sleep eventually. I guess the lack of sleep caught up with me because I was having some memory loss and confusion. I had a very hard finding things at home, I was having a rough time explaining directions to the students at school. I just couldn't get the words out. I just felt lost in general. It really scared me because I am a very organized person. Once the kids left my classroom and I was alone, I just broke down. I don't ever cry at school. I was so upset with myself. I didn't want to be unprofessional and I didn't want the kids to see me. The last thing I wanted was for the kids to know I was upset. The teachers were so sweet and took over my classes for the day so I could go home and rest.  I went home and Phillip called my doctor to ask about the memory loss I was having. They told me to go to my primary care doctor here in town and have them evaluate me immediately. They did some blood tests and a CT scan of my head just to rule out any problems that could be causing my confusion and memory loss. Luckily all of my bloodwork and my CT scan looked good. I am so releived. I just don't know if I could handle any more bad news. Luckily, the doctor chalked all of my symptoms up to insomnia. I started on Ambien last night and I ended up getting a good 4-5 hours of sleep. I am doing a little better today. Hopefully I can get some more rest and be on my way to feeling better. I am hoping to enjoy a good weekend with my family!