And the 💩 bag is the gift that keeps on giving

Typing this from the fold down bed vinyl couch from the fifth floor oncology unit in the hospital.

(I realized my previous post failed and just needed up posting that sorry guys, and well sorry to my future self reading it as now the dates are wrong…. Movin on)

Listening to the auction machine go on and off every few seconds.

For two days we have been at the hospital. It all started yesterday morning.

I woke my mom up to tell her to check her bag (she has an illeostomy) to empty etc. Totally routine for us.

She was complaining her stoma hurt. “Hmm, that’s unusual maybe we need to ha he your bag” “yeah let’s do that real quick” she said. We got the bag off and began the changing process.

Thankfully it was first thing in the morning and she hadn’t eaten anything or drank anything, so I didn’t have to worry about having a fountain on my hands, or trying to jam as many marshmallows as she could tolerate down her throat. (Marshmallows stop the flow)

I noticed when I measured her stoma she had increased in size…. Nothing that necessarily alarmed me right away but it was absolutely interesting.

I took note of it and got the bag on, beautiful for as always, and proceeded to run around the house. They say illeostomies will leak within the first 1-2 hours. I topically try to be around for that as we had a horrible 5 bag change day and it would have been impossible to go in and out of work etc.

After about and hour or two and some fluids I noticed no output what so ever and her severe bloating…. That’s when I started being concerned.

She wasn’t in agonizing pain yet, but she wasn’t also having any way to evacuate her toxins. I called her osimy wound care nurse, all three of them that work together and could only reach Sam via text message. Sam told me call the main office and I did and got ahold of carol.

Carol explained she didn’t have as much knowledge as deb our angel nurse who is sooooo amazing. She also let me know we may need to go to ER since she couldn’t reach her.

So we decide to wait a little longer then we would go. Deb finally called us and was genuinely concerned. She told us to do a hot shower and hot tea or coffee and if nothing in ten minutes get to the ER.

Welp, one hot shower and hot cup of coffee we were on our way to the hospital.

Still no output.

Coffee allllllways makes me have that urge, and with illeostomy bags you don’t control or feel anything it just happens and nothing was happening.

At the hospital they did a CT scan and blood work. The CT scan came back showing her large intestine inflamed and suggests a blockage.

Fantastic. NOT.

His *genius* plan is to stick an NG tube in.

Now those of you who don’t know what an NG tube is, read up on it, or read people’s experiences with it. I had seen people swear never in a trillion years would they do it again to the point they verbally assault the dr until they find another solution. It is basically a feeding tube like thing that goes up your nasal passage to your stomach.

Instead of pumping nutrients it’s hooked up to light suction, to get the fluids and stuff out to attempt to evacuate the blockage.

Now my mom is so tough. So strong.

But this was just brutal

Fourth round… just kidding… low platelets

Probably time for an update.
I have been really struggling with the fact that we choose to trust one doctor and to just go into treatment. I am scared we should have gotten a second opinion, I am scared that we probably should have called national centers…. But then I get realistic and realize that no matter what we have state Medicaid and national centers probably wouldn’t have seen us.
I think I am just really struggling in general. Every day I am again on the brink of tears, today is especially no exception.
We are still trucking trying to adjust to life with the ileostomy and cancer. My mom has finished her third round of chemo and was going in today actually for her 4th round. After the labs we sat in the oncologist room eating a bagel sandwich. My mom kept complaining of how weak she was today which we both chalked up to lack of sleep the night prior.
The associate nurse practitioner whom saw my mom today came in went over how she has been feeling and if there has been any symptoms or anything happening. My mom explained there was bleeding in her ostomy bag.
I could feel my face get flush, and warm. It is so hard for me to not get violently anger when there is bleeding happening and she doesn’t tell me.
She explained “I didn’t tell her because they never do anything at the hospital anyways”
Michelle was the NP name, she explained we need to make sure we keep an eye on it etc. She went over the usual, prescriptions and if we need refills, and then told us she can’t give us treatments today. Her platelets went from 106 to 72 or 76. The number escapes me at this moment.
They removed her accessed port and then let us go on our way. My mom was using a wheel chair today. Michelle’s stressed the importance of nutrition and getting some exercise… but it’s like NOTHING matters. I dropped her off at home went to go get as came back to check on her, and 1 she was sleeping, and 2 she had scarfed down a piece of cake which I didn’t even know we had, because I failed to search the fridge last night before bed because I came home around 11pm and had to go straight to sleep since early infusion at 7:30.
SO not only was she well enough to make cake yesterday, she totally ignored the ‘you need better nutrition’ comment and just chose to eat cake.
I don’t know what else to do anymore.
I am trying very hard to let it not affect me and for me not to be angry with her or upset about it… But I mean COME ON. I want to do everything that we can do to give this the best possible shot but I am drowning.
I have to coupon and do sales from my couponing to make extra money to get us by…. On top of that I have no time to cook on the weekends and to make sure she has meals prepped. Hell even if I did she probably wouldn’t eat it. I prepared some stuff this past weekend and my mom and my bf ignored it.
I don’t know if I am just stressed and or overwhelmed or what is going on. I have been able to justify and be easy about stuff before but I just feel like I am going to lose my mind.
I think I just need to take a break and get a new game plan in place. She needs to be moving and walking and getting exercise. And I just don’t know how else to force this upon her.
I am just so frustrated and overwhelmed, I am about to snap. I am letting small things get to me at work, and it’s to the point where a small aggressive customer, which is usually my specialty, makes me want to cry. I think I just need to scream out that I need help.
I think its just a bad day right now and it will get better.

What a journey this has been.

The health system that is supposed to keep citizens healthy, is a joke.

You cant get anywhere to do ANYTHING! Unless you are persistent and do not take no for an answer!

THank goodness my mom raised me to be strong and to challenge things and fight for what I believe in. The most important thing that I believe in, is keeping ontop of these medical professionals so she does not become someone who falls in the cracks.

My mom has worked hard all of her life. Growing up she has 3 jobs at the same time to help her family. She has done numerous jobs and set aside her pride to make sure ends are met and no one went without. She was in the medical profession assisting in OBGYN, she test drove cars, she worked for a huge corporation in quality control, and even being a simple cashier at walmart.

The one thing that has been common in every job, her customers. They love her. They walk up to us in grocery stores, or while we are out and about to give her a hug and tell them how much they miss her. She is a good person. So kind hearted, and wants to help the world.

She believe in old school values, treat someone the way you want to be treated. Be kind to others. Don’t burn bridges. You attract more sugar with honey than you do vinegar. the list just goes on and on.

So to see her be so polite and ask for help getting her state insurance application processed to start treatment, and people tell her “ma’am there are 195 cases in front of you” makes me want to get violent.

REALLY? Where is the humanity?! Shes a legitimately sick person who needs treatment, and you cant allow your guard down to care and hear her concerns. No. NO. NO THANK YOU.

I have taken things into my own hands. I knowcked on doors, I kicked them in. I asked for help. I didnt take no for an answer.

We were able to get her access application pushed through on an emergency basis and scheduled a primary car physician appointment for friday the 11th.

The Dr. seemed genuine, wanted to help us. stated she would rush referalls to the two cancer treatment centers we wanted to go to Mayo Clinic, and Md Anderson. She also mentioned Ironwood.

I called their office on Monday only to get a snoody woman who tried to tell me theres nothing else she could do, and that Md Anderson doesnt accept our plan. I was so over being interrupted and told ‘how it has to be’ that I told her waiting 4 days for a rushed referall is unacceptable. I immediately called the hospital Md Anderson and found an angel.

I was in tears stating what I had heard 4 days to hear anything and md Anderson doesnt take it etc. She listend to me and was actually sympathetic to the trouble we had. She told me she would call our insurance personally and call me back. Mind you this was at 4:20 pm. I assumed the next day she would call.

She called me within 20 minutes and advised me as soon as we update our primary care we can schedule an appointment. I was so relieved. Its been a nightmare getting this process going. As instructed, we updated the information and set our first oncology appointment for Tuesday the 22nd 2014.

I have to focus on the small victories. I have to remember this is a long process and will be a stressfull one. I am trying so hard to be the rock through all of this and to be the super star my mom says that I am. She has been so impressed at my actions to get this process going.  I just cant kick the feeling that I should be doing MORE. I should be researching more, or coming up with more find raising I deas. I should be helping MORE.

Often times I am so strong and so focused on her at home, that the moment I get into my vehicle, I break down into tears. I am trying so hard to keep all our pieces in order and together, with scotch tape instead of glue it seems.

I have to remember its these small victories of saving time, kicking down doors that I need to be proud of. I just hate how hard it is to get treatment. How taking care of our sick people with these serious diseases is not an extreme priority.

But as mama says “The squeaky wheel gets the grease”

Intro

Hi.

My name is Carrie, I am 25 years old. I was born and raised in Arizona.

My moms name is Peggy. She is the light of my life, and my absolute best friend. She has always been my guiding light during trials and tribulations, and has always made me make my own choices, and helped me pick myself up if I fell.

She raised me as a single mom. To any single moms out there, you know the struggle that this mentioned journey brings. Lots of stress and worries, but none of that ever got to my mom. She always made sure that I knew just how much I was loved, and that no matter what I could always ‘call mom’

Through my life we have faced many challenges, and fought, kicked, and screamed to conquer them.

My mom went without medical insurance just so I would have insurance. She sacrificed so much for me, just so I would have a good life, one that I could be proud of.

Our relationship is close, she is all I have, and I am all she has. When we were in the hospital recently, we were getting results of a test back. The dr came in and mentioned he needed to grab another lady. I thought to myself that was strange, why would we need someone else. My stomach instantly started churning and trying to escape my body it felt like. I was instantly unsettled.

The two returned, and it feels like a blur…. They began speaking about a mass they found, a spot on the liver,  and it was…. Cancer.

I felt instantly numb. Not the typical numb. but the flash split second brain doesn’t function, can’t feel anything, can’t move, cant speak, cant breath. I kept trying to process the baby talk gobble-dy goop that was just spewed at us. It seemed as if I was in a foreign country and I was trying to listen to directions to a bathroom, nothing made sence to me and I didn’t know why. I couldn’t process anything.

Then I remember my brain telling me it was time to breathe. I gasped for air, and snapped back into reality, and realized what was happening. I looked at a general doctor aka ‘hospitalist’ with a straight face, and a social worker with a straight face.

I was immediately angry they were so absolute. It was just another day in their world. Where as, in mine, it was world ending.

I was now sobbing, gasping for air, so overcome with emotion. When they stated “Medically fit to be discharged” I lost it. I ‘ comprehend how we were being told she has cancer, but we can go home now?  How does that make sense, she needs treatment and help.

We asked questions and I had to keep repeating “Is this curable” and the Dr. would say “yes”. 

After several times and more confirmation, it was real. It was Cancer. It wasnt going to change no matter how badly I wanted it to change. We were told we were going to be discharged within the hour.

Due to no insurance, we were unable to be kept in the hospital. We needed to work on getting her state medical insurance approved, and then begin the process for treatment.

In seconds we were laughing and joking, and then just completely shattered. But it was through streaming tears, and sobs when we grabbed each other and said “We are going to fight this”.

Together.