Trials- Part 2

 One night I left work and didn't return that school year. I was in the hospital for 6 weeks and as many floors. I had left all my stuff at work and basically got it in August when I set up my room. 

We ended up in the emergency room again because I was vowiting and bloated. The GI doctor that had put in the stents was called and came in. They decided to rush me to emergency surgery since there seemed to be a blockage in my intestines. The blockage turned out to be the stents mixed with the tumor. In my mind the tumor was the size of a watermelon, and I don't mean the small pureheart ones! Instead of taking everything out I was given a colostomy. They wanted my bowels to be empty to prevent infection internally. So for about three to four days I had waste coming out through a bag on my left abdomen. It was awful! My stool was so firm it wouldn't go through the hole, no matter how much I drank. When it hit that hole it would push the thick, plastic part of the bag off. So I had a mess to deal with. I was also put on no food and eventually nothing by mouth. 

I was taken back into surgery and let me tell you those surgical rooms are not like they portray on tv. There are racks that roll around with supplies, lots of machines and they are absolutely FREEZING!! My doctor liked to do his surgeries late at night. When I came to in recovery I remember being wrapped up in blankets. They wheeled me to my room and I got to sleep. The next day, of course I was not feeling great. My husband was trying to work, handle our 4 dogs, and be with me. I got to the point that I would tell him to not bother coming to see me- I was afraid he was going to get into a wreck. 

That night things took a turn for the worst. I remember waking up and being hooked up to a heart monitor, oxygen and other gizmos. There were tons of staff in my room all talking. I felt like I had been hit by a truck! I remember no one even acknowledged me until I yelled out "Am I dying?" One kind nurse came over and said no they were working to keep me alive but all of them were trying to figure out the best course of action. I think I passed out because when I came to I was upstairs in Cardiac ICU. I was connected to every machine in the room. My husband was at home during all this and I remember the nurses telling me they were in contact with him. I was terrified and had no one there to hold my hand and keep me calm. I was given tons of medicine through my IV. Two days later the GI doctor came in and said I looked so much better. I was not white like a ghost. I told him I felt somewhat better- relatively speaking. After one more day in ICU I was moved to a regular ward.

Back in the ward I was sitting up and talking. The colostomy had been closed, the stents and tumor removed along with lymph nodes and I had Jackson Pratts to drain the fluid in my gut. I was still given a ton of medicine through IV, but I wouldn't eat much. After a bite or two I would say I'm full. My stomach didn't like me. The nurse noticed that the drainiage in the Jackson Pratts was turning from a white liquid to a sluggy, gray-green liquid that stank. My husband happened to come that night to see me after work. The doctors took me off of anything by mouth that entire day. That evening I was taken back into surgery. When I awoke in recovery I was incubated and freaked out! I was taken up to ICU again and this time I stayed a week. No one could find my husband and he wasn't answering his phone. He had gone to my room and fallen asleep in a chair. They found him in the morning when they went to move my stuff to ICU. 

In a different ICU this time I had a wretched nurse!! She was so mean and I obviously couldn't talk. I tried to feel what was on my face and she screamed at me that if I touched it she would restrain me. I asked to speak to a doctor by writing a note. She told me no there was no doctor going to come talk to me. I wish I had reported her. The hospital praises itself on caring nursing care and she was far from it. I was alone and terrified- not know what had happened. I thought I had a reaction to the anesthesia. My husband came up and she told him it would be best if I would just go to sleep. Oh I wanted to flip her off. I tried writing notes to my husband but my writing was really shaky from all the drugs in my system. When the Respiratory people came in around 9am, they told me I could remove the tube. I was so GREATFUL! They couldn't tell me why I had, had it. At this point I was told I would be in ICU until my heart stabilized. I was having trouble maintaining a regular heartbeat. I'll share more in my next post about the next 5 weeks of life in the hospital. 

Trials- Part 1

 

I am going to share something I have never shared before. I haven't ever told anyone what happened in the Spring of 2018. Many people know parts of it, and my husband, who was there for most of it, doesn't even know the entire events that happened. Before I start I can tell you that Spring 2018 made me realize I was a much stronger person than I had ever given myself credit for! 

Too set the stage let me explain what was going on prior to April. I started chemo very quickly after my diagnosis. I was doing a regime name Folfox. It had a powerful drug- Oxaliplatin. The drug was working until I developed a reaction to it. I got very red all over, nauseous, difficulty breathing and overall felt awful. The nurses immediately hit me with Pepcid and other stuff to counter the drug. Needless to say we stopped using it. I was moved to a different regime named Folfiri with a new drug- Irinotecan. Then that one made my chest tight. So chemo was stopped and everything was looking good in the scans. The doctor told me he would see me in three months. So I went about my business and thought life was good! 

Then in April, I was having difficulty with using the bathroom. I was so constipated and nothing was coming out for days. I felt so sick my husband took me to Methodist ER. After a myriad of tests the doctor turned me over to a Gastrointestinal (GI) doctor that was on call. He came and talked to me about putting stents in my colon to improve the function. Since it wasn't surgical I said sure. So I was prepped for a procedure. We had to wait long hours for use of a room with an imaging machine so he could see what he was doing. The surgeon explained to me that  he was going to put the stents above and under the tumor to open things up. I finally got to imaging room and got situated on a table. Then I went to sleep.

While I was asleep the doctor inserted the stents. I woke up and definitely needed a shower because when he put in the stents things moved and it was messy. I basically got dressed and went home. Life went back to normal for a couple of weeks. Towards the end of April things got really bad and I ended up fighting for my life! 

Mental Outlook

 I get asked all the time how I can be so positive with cancer. It's a question that confounds me. I guess I wonder why would I be down in the dumps? What good would that accomplish. Now that isn't to say I don't have moments when I get mad, sad, upset, irrational, and a whole gamut of other emotions. In my post last week I alluded to the fact that I was committed to not act like a fool once diagnosed. My mom fought Ovarian Cancer for 18 years and she had bad days but overall, I only saw the strong woman my mom was. If I had acted like a fool she would have been disappointed in me and I couldn't live with that!

So a positive mental outlook is what I have and what I can control. I can't control most of this journey with cancer but I can control how I act. I managed to teach for 5 years, full time in a classroom. During that time I tried to model things were good. Sometimes I would let my teammates know I wasn't feeling well, but overall, I put my head down and moved forward. I know that work gave me solace and a sense of purpose. It allowed me to rise above the cancer until March 2023. At that time I was really sick and in bad shape so I left teaching. I ended up taking disability retirement and that was a low point emotionally for me. I felt cancer had taken something I truly love! But I'm getting over it and finding a new sense of purpose slowly. I'm actually going to try subbing some. 

Most of the time, when I'm with the nurses or doctors I tend to be silly and funny. I like to lighten the situation. On treatment days I will crack jokes with the nurses. My doctors and I have a super good report. They know that I am super honest with how I'm feeling but I still aim to be positive. My reason for having this outlook is again- I can control how I view things- because there is so much in God's hands! 

I also deal with present. I don't what if myself to death and worry about the future. Dr. Pappa, a very wise oncologist, taught me to deal with one day at a time. And boy has that made a huge difference in my life!

 I will tell you there is one person whom I can't handle how she views my cancer. It's my mother in law. She is the sweetest and most caring person, but to her everything is over the top huge. I just can't handle that. Some things are dips in the road and nothing more. So we only tell her the important stuff that we tell the entire family. I also don't want her to stress and fret about me. She is a big, loving worrywart! 

I also want to address the word- sick. I cannot tell you how many times people have told me I'm sick because I have cancer. I don't feel that way. To me the word sick is for someone with flu, pneumonia, strep throat, etc. I have cancer but that doesn't make me sick. It presents challenges and yes there are times I am sick from treatment, but I view it as more of a chronic condition like my asthma. I don't walk around believing I'm sick. This can be hard for people to understand. I basically feel I have a condition that presents some challenges and that I have to live with. Beside if the zombies come I'll be okay- bad meat!! 

If you have a family or friend diagnosed with cancer follow their lead. Don't expect them to be always down. Laugh and cry with that person! When things are tough they may not want to talk to you but you can let them know you are there for them. If you have been diagnosed give yourself time to adjust to the new normal. Keep doing things that you love to do. If you need help finding a positive outlook, feel free to contact me. I'll be glad to help you. Remember that cancer is only one part of you- not your entire being!! 

Diagnosis 2017

 So I realized that I jumped right in to treatment but never took the time to explain how I found out I had Colorectal Cancer. So today, I am taking a step back to the past! In this post I will delve into ancient history and share how things went down. I will use correct anatomical/medical terms and some information may be to much for readers. Again, I am sharing in the hopes of helping others with getting screened for cancer or those who may have been diagnosed and need some support- someone in their corner!

So in my 40's I developed issues with using the bathroom. When I would have bowel movements there would be blood with my stool. I just assumed this was because I was a bit constipated. Other times I would have very loose stools. I shared with my PCP and he felt I just had Irritable Bowel Syndrome or IBS. I kind of just blew it off and didn't push for more information- my bad! 

Then in October/November 2017 I was having difficulty eating. When ever I ate ANYTHING my stomach and intestines felt like they were going to war! I would have nausea and pain in my abdomen. It was horrible. One evening I couldn't take it any more so my husband took me to a stand alone ER. The doctor did blood work and a CT scan. I also had to complete this LONG questionnaire about my health. It took an hour to fill out. The doctor came to me and said that she was seeing that my intestines were full of stool. At that point she asked about my toileting habits. Needless to say I wanted to crawl under a table and die from embarrassment! After our discussion my embarrassment grew when she insisted on doing a rectal exam. I was thinking to myself, "I don't know you well enough." but I mustered the strength to let her complete one. I was MORTIFIED!!! After all of this the doctor referred me to a Gastroenterologist. 

The next day I called and scheduled an appointment with a GI doctor. I got in within a week. The doctor was a female and very nice. When she examined me, she asked me lots and lots of questions. She even mentioned she would like to do a rectal exam, but I declined. Modesty! When I told her about how I felt after eating she said that she needed to have me do a colonoscopy and endoscopy to look at my insides. Boy did that scare me! I remember my dad and all the comments he would make about these procedures and my anxiety went into overdrive. So we scheduled the procedures for December 27, 2017.

Christmas came and went and I was very careful about what I ate knowing I had to do the procedure prep on December 26. My husband got the prep kit from HEB and on the 27th I had a clear liquid diet for the day. At about 4pm I started the prescription prep kit. It took a while to drink down the vile liquid. I had one hour to drink. I managed to get it down but just barely. My stomach was not happy. So then I waited. We thought it was working about an hour later, but I vomited up everything! I was shaky, sweating, and so uncomfortable. My husband called the after hours hotline and spoke to a doctor. He explained what happened. I still had one bottle of the prep for the morning. The doctor decided we should use a different prep. He switched me to Miralax. So my husband went to HEB and got the biggest bottle he could find and I got to start over- LUCKY ME! We mixed HALF the bottle of Miralax with a drink and I started drinking. It was grainy and thick. Totally disgusting! I did manage to drink it and keep all of it down, but just barely. So that evening proceeded as needed.

The next morning I had to drink the other half of the Miralax. At this point my humor meter was very low. I managed to do it and everything happened that was supposed to. Then we were on our way to the clinic for my appointed time. Once I signed in and we waited, I eventually ended up in a little bay with a hospital bed. I got to complete more forms while running to the bathroom every few minutes. I got changed and ready for the procedure. The anesthesiologist came in and asked if I wanted anesthesia. Of course! I did not need to be awake for both procedures- NO THANK YOU! Finally the nurse came in and wheeled me to the procedure room. There were lots of machines and hoses. The doctor was in there and they had me position my body and then I went to sleep. I had a good nap!

I remember waking up, flat on my back with my husband by my side. Things were very fuzzy. The doctor came in and I asked her what she found. She showed me a picture of my colon with what looked like a GIGANTIC tumor in it. She said I had CANCER, as she suspected. I bawled and bawled, yelling "I don't want cancer." Her and my husband worked to calm me down. I'm pretty sure I still had lots of anesthesia in my system. I finally calmed down and stopped crying. To this date- that is the only time I ever felt sorry for myself or cried about cancer.

 I made a commitment to myself then and there that I would fight this and do it like my mom had. My mom spent 18 years with Ovarian Cancer before she passed away in 2019. She fought like crazy and never gave up until the end. She was always positive and lived life. I wanted to emulate her! I knew I couldn't be down trodden after watching her be so brave and courageous. 

The GI doctor came to see me before we checked out and I asked what was next. She said that she would contact my PCP (Primary Care Physician) and they would get me to a doctor quickly. Time was not on my side. The tumor in my colon had taken over the entire inside and there was a small opening for stool to pass through, but it was closing up. Within about 4 days I got a call that I had been referred to The Start Center. I got a call from The Start Center and had an appointment before I had to return to school teaching, after the holiday break. 

Within 2 weeks of all this I had my Medi-Port put in and my first chemo session. Needless to say this entire time period was a whirlwind and my head was spinning. What I learned was that I should have pushed my PCP for more when he said I had IBS. Don't know why I didn't but if I had my cancer story would probably be different- spilt milk- we'll never know. I also took my husband with me to all these first appointments to be an extra set of ears. Hearing you have cancer changes your life and is so overwhelming! With both of us at appointments, my husband could ask questions I may have forgotten I wanted to ask and fill in the blanks when I forgot some tidbit of information. 

I hope this post provided an understanding of how things went down. I apologize if anyone was grossed out. Colorectal Cancer is something we need to talk about more. It is rising in young adults 30-45. And sadly many of them are not finding out until it is end stage. If you have any symptoms, please learn from my embarrassment and speak up to your doctor. You DO NOT want to have a journey similar to mine! If you are 45 or older, please make sure to stay on top of the required screening. As I have told people- the worse part of a colonoscopy is the prep day. After that it's easy breezy and just might save your life!! 

Treatment Time!

 I'm going to share what my experience is like with treatment. I hope yours is just as good. I actually enjoy getting treatment and seeing all the nurses. It is like my own personal "Cheers" experience where they all know me. It brings me comfort to see the friendly faces of the nurses and other patients that I know getting their life juice. I make it a positive experience since I have to get treatment anyways. I can't imagine  being negative about it. Treatment and the meds are what keeps my cancer at bay and allows me to continue to do stuff and live! 

My treatment day is generally a Wednesday. There are times I see the doctor or nurse before treatment. In that case I get blood drawn prior to seeing them so my labs are available for them to see. If I don't see them then the techs in the treatment room will access my port and draw blood for labs. Nothing happens prior to seeing what my numbers are. I also have to provide a urine sample. Since I go in around 11ish for treatment I do the urine sample at home. It just makes it easier because you never know when the bladder is going to freeze up and not cooperate.  I normally just sit there and read on my phone while waiting or I might eat lunch/breakfast.

After the labs come back and everything looks good, pretreatment meds are given. I get Tylenol, steroids, Benadryl and a shot to slow the secretions of the intestines. This all takes about an hour or so. It is always a question of is the Benadryl going to make me take a nap or is the steroid going to make me be wide awake? I never know ahead of time which will win. 

After all of that then comes the liquid gold! My drugs begin. I get Vectibix, Irinotecan, Flouricil and Leucovorin over 48 hours. You may be wondering how that happens. After the initial drugs that only take and hour and a half or so I am then set up with a Infusystem Pump. I have the pump until some time on Friday. During treatment I can pretty much do whatever I want. I tend to play games on my iPad, read on the phone or nap. Sometimes I only nap because the drugs make me so incredibly tired. The nurses check on me and see if I have any needs and my husband will get me any food or drinks I want. The steroids tend to make me HUNGRY!! 

After everything is done and I am hooked up to the pump (My Little Buddy is what I call him.) I get to go home until Friday. On Friday I return and get hydration (I tend to forget to drink) and deaccessed from the port. Boy does it feel good when the needle comes out! Then I go home until Sunday, when I return for a shot to boost my white blood cells. 

That's all there is to my treatment. To this day it amazes me that I actually spent five years doing treatment and working as an Elementary teacher full time. I actually enjoy going and joking around with the nurses and others. The nurses are super compassionate and caring. I know most of them well because I've been doing this for so long. I hope your time in treatment is just as good and that you have excellent nursing care. 

The Beginning

 This blog has been in my mind for a long time. I have wanted to share my story with people for some time but it never felt like the right time to do so. So here we are today and the timing is right. I am not sharing my journey with cancer for glory or reward, but simply as a way to provide insight to those who may be new to a cancer journey or those who may be curious. I am hopeful that this blog will not only provide insight to the things that I have endured but also uplift and provide someone else with the strength they need to endure. 

It is said that God doesn't give us more than we can handle. There are times I have questioned that but at the end of each step I have realized how truthful that statement is. So if you or someone you know was recently diagnosed- welcome and I am truly sorry you are having to begin this adventure. If you are someone who has been fighting and feel weary, tired, broken- welcome and I hope you can find something to motivate you! I'm in your corner! Let my strength help carry you. We all need to lean on someone so please feel free to lean on me.

This is me.