A lot of updates since July 25th

Sorry it has been so long. I really wanted and intended to write at least once a week but sometimes life happens.

my mom got disability thank god. I burned through FMLA time at work, but they want me there and don’t want to lose me, which is such a nice thing to hear. They are being so cool about everything.

My 26th birthday came on September 3rd. My mom got me a little mermaid cake like she has every year, even a little mermaid card that said “even at 26 you will always be my little mermaid”

she had a ring custom made for me, both of our birthstones, my name on my side and mom on the side with her birthstone. I never take it off hardly. I love it so incredibly much I cried.

I have some crazy stomach issues going on. I had h pylori bacteria they treated with four antibiotics, one which was completed ridiculous. It had a metal taste as a side effect and it made drinking water like eating aluminum foil while licking a 9 volt battery.

my mom has completed 7 rounds of FOLFOX. We have been non stop in and out of the hospital which has delayed rounds of chemo so they haven’t been able to get through a complete treatment cycle uniterrupted. Dehydration issues, partial blockages, you name it we have had it happen during treatment.

To the point where her oncologist has considered changing her chemo regimine from FOLFOX to FOLFIRI.

which was naturally concerning, but when we got there the PA we see in between seeing the oncologist, stated she called a surgeon just to see what they would say. I started to cry because this is what we have wanted. The liver mets are necrotic, dying, and we need to be able to get through treatment uninterrupted. So she explained the surgeon is fine resecting the main mass as long as there was a plan to treat the liver later.

we felt like this was a big win.

Once we got we got in to see the surgeon on Friday October 17th, 2014, he had her hope on the table to look at her stomach and she had asked if he was going to do anything with the liver. He had her hop down and he told us “I want to be clear, that this is not going to cure you. I don’t know if anyone has told you this, but most likely you will ultimately die from this Cancer”

holy shit was my blood boiling. He made it seem as if cancer was everywhere in her liver, and that we had no chance. My mom was crying her eyes out, I was crying. And he said “wow you guys are really close huh” and my said “yeah we have always been really close” and I added “she’s my best friend. We have only had each other growing up she was a single mom, it’s just us”

i could tell he felt bad.

After the appointment my mom wanted to go to breakfast we both cried the entire time. We decided to go home instead. We went home and I typed an email to the  nurse. I wanted to make sure we hadn’t mis-understood anything. She agreed that it wasn’t his place to say anything like that he’s not really involved on the treatment plan and he’s just a general surgeon. That she would set an appointment to talk to the oncologist.

we know there is no guarantees. We aren’t in delusionville. But we want to fight we want aggressive curative intent treatment. I have consistently said the exact same thing, every appointment.

We then went to the casino, and we had some fun, and the nurse called me and I felt a lot better about things.

i hate this fucking disease so much.

so surgery to take out the main mass and reverse her illeostomy is on the 27th of October. She will be in the hospital for 4-6 days. I will be taking a leave of absence from work as well. Recovery should be 4-6 weeks.

so last night my moms sister came over and took her out so my fiancée and I went out for the first time in a very long time, probably since her diagnosis. We ate dinner, well I tried. And we decided on the movie “The Judge” Little did we know The Judge has advanced colon cancer 😕😑 and he dies in the movie.

‘y fiancée grabbed my hand when they said he had colon cancer and it was too late, and told me we should keave, but I stayed. It was really hard, very close to home. So I cried as well. Then the idiot came home and told my mom about it. Ugh men.

its like I can’t escape this fucking disease for one moment of any day at all!!!!

I’m hoping for some reassurance from the oncologist. We shall see.

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 not as great

4 down 1 more to go
Finally mom’s platelets were high enough for her 4th round of FOLFOX.
Boy was she all fired up and feisty that morning. It makes me laugh just thinking about it, she was all about back seat driving, and demanding this be done this way and that done that way. It was comical really. She was very ornery, but it wasn’t the obnoxious kind.
She has been feeling under the weather as if she is getting a cold, so we wanted to make sure the Dr. addressed those concerns, which she did. Her blood results were a lot better this week, so no delay in treatment which was awesome.
We messed around a bit in the hope boutique and my mom picked out a shirt she really wanted that says “fight like a girl” she didn’t care about the pink ribbon, she wanted THAT shirt and THAT shirt alone. So we got the shirt, even after they rang it up for $26.00 and she immediately protested stating she didn’t need it; it was expensive etc, and I asked her “which one do you WANT, I want you to be happy with it and want you to have what you WANT, you do not ask for much.” And it was done; we walked up to the infusion floor with the shirt in tow J
Once we got to infusion she picked out lunch, and our nurse was genuinely really cool, she asked if my mom had tried the acupuncturist for her neuropathy symptoms, and put in some orders for him to see her. It was really a cool experience. Here is why, 1. I hate needles, I don’t know what it is, I can get pierced and tattooed all day long but a shot and I instantly want my mommy and a tissue, and a stuffed animal and my favorite movie the little mermaid too. (Okay maybe being dramatic, but I turn into a big sissy for real) 2. My mom was totally ok to try it! She was totally ready for it, and looked me in the eye the entire time he was putting 14 little needles in her. 3. She is honest with me, 110% and always has been, even as a kid, if I asked if something will hurt, your damn right she told me it would hurt. I totally respect that honestly, it taught me to be brave and brace myself for some sort of pain.
Acupuncture was no different, she was talking to me about how it was fine, “no big dea- I felt that one- piece of cake you could do this no pro-felt that one- no problem” insert big smile here.
She took the acupuncture like a champ, and for ONCE her fingers were not ice cubes during treatment, so that’s a cool sign it works! Once her treatment started, she got her Ativan premeds, and that makes her sleepy, which she is thinking of declining next time. We have a routine down now and get through it. She had to actually ask for more nausea medication onto of the nausea IV bolus they hang at the beginning, which I thought was weird.
***HUGE SIDE NOTE- I just realized writing this, that I failed to write down my mom’s pill schedule with which pill she takes and which time, and now I feel like a huge cow pie. I need to call her in a minute on my lunch break and get that figured out. Holy crap I am terrible. Wtf is wrong with me…***
Thank god she has slept all day and totally hasn’t needed and forgot about the meds too…. Anyways back to the story.
She was very weak and dizzy-ish towards the end, so I wheeled her out in a wheel chair and we went immediately home, usually she likes to run to the store and get things and what not, but not the forth round.

She slept and fought very hard to stay awake as she hates sleeping for two or three days after chemo.

Over all though she is handling it as a champ is!

We bought this shirt on her fourth roud. She hasn’t asked for many things for herself and she fell in love with this one. Even though it’s pink, and we hoped it was blue for colon cancer, she still rocks it amazingly and it was worth every penny of the $26.99 (😧I know right) to see her smile and be so happy!

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.

So close to starting

The begining of a long journey

If a picture could speak its thousand words that it is worth, this one would have hundreds of thousands of words. Each ribbon represents someones hurt. someones pain. Someones fight with cancer. Each ribbon was tied with care, pride, even sadness.

This is my mom tying a ribbon on the tree in the MD Anderson building for cancer patients and survivors, as well as loved ones who fought the good fight.
This is so symbolic. There are so many people affected by terrible diseases and terrible cancers. It is such a long and tedious journey.

Tomorrow is a big day for us. Her chemo plant is implanted. We are ready to start the fight and get one more step closer to being normal. We went to a newly diagnozed support group the other day, and we were actually the only ones that showed up. I wont lie it was a big Bummer since I was hoping to find someone else battling cancer so she can connect with them.

The psychologist who was present mentioned the challenges that we face swaping roles. She spent her life being the mother, and now I have to take on many roles and many of them are ‘motherly’. It is something we both are slowly learning to adjust to, and hopefully we will get more comfortable in our new shoes.

Until then, I do my best to be optimisitc, and to stay focused on what I can tackle and or handle. Most of the time I find piling as much on as possible, the only coping mechanism I have.

Chemo will start Tuesday 05/27/2014. I am not even sure what to expect, what to prepare for. I am sure I will be a basket case, and totally concerned about every little sign or hiccup. But thats what you do when you love someone 🙂

So this is the begining of our long journey, we tighten the ribbon on the tree, showing we are buckling in for a fight, and fight like hell we will!

Wheres the armor and the battle plan?

Everything seems to be moving fast.

But yet really slow.

I am finding my personal good days and bad days seem to be blending together and getting mixed up.

We have been having some hiccups lately. Mom had a ER trip due to blood in the ileo bag. The staff wasnt terribly concerned as it was a one time deal. That was really annoying. You tell people to monitor their output and to be super cautious with everything and then BOOM we come to you in a big deal situation, and you act like we have a paper cut?

Whatever.

Moving on. Her blood pressure has been extremely low for quite awhile. I have noticed this for awhile now, but wasnt really sure that I could attribute it to anything. Her ostomy nurse came by this afternoon and did her vitals. 78/38. Yep that low.

Figures why she is forgetful, why she cant seem stable on her own two feet, and why shes consistently dizzy.

Needless to say we had a same day appointment with our PCP. We saw someone different, whom was reluctant to change any of her medications. Finally thought she reduced her blood preassure medication and advised us to clear it with her cardiologist. I am waiting for them to call me back.

This explains why she has had NO energy and would not be able to do much other than sleep. Her genius Dr. today told me “shes sick of course shes going to be tired” …… I thought to myself Oh ok miss know it all, cuz you were there like three weeks ago when we were walking laps around our apartment complex and where every day or every other day she was chomping at the bit to go drive or walk around a local store…. yeah TOTALLY NORMAL

But that is neither here nor there. We are adjusting to life with the Illeostomy. It has become second nature to me to change her bag without aide from nursing staff. Seriously they must only do this like twice in their internships, it took 3 nurses the last time we were in the hospital before the most recent, and they totally had me walk them through it. Now I am gaining the confidence, and starting to see what works and what doesnt work.

The nurse this time was interesting she found out my moms diagnosis and was lie “do you have any grandkids”  mom ” not yet” nurse to me ” oh why not”

I wish I could have kicked her in the face. Why is that your business? Do you understand how hard it is to be trying to concieve? Instead of reaming her six ways from sunday, I settled with “Im trying”. And she went on to tell my mom how great they are. I had to run to the bathroom to cry. I want that for her. I want her to meet her grandkids. She had been on me about grandkids for awhile and I just blew it off saying I wanted to do more school etc and here I am DIDNT DO MORE SCHOOL…. just wasted all this time.

Enough of that.

I have been doing what I can to keep her spirits up. She approached the topic of cost of creamation the other day that made me bawl like a toddler trying to hide it form her in the car driving.

Later on I told her she needed to snap the hell out of it. She explained she just wanted to make sure things were in line IF somehting happened. But she knows shes gonna kick cancers ass, she will be weak doing it but shes going to do it.

Thats got to be positive right?

Then I have been preoccupied with her oncologist. Hes a department head, very well educated. However, he is not positive or negative. I mean he flat out said he cant use the word CURE, we are hoping for that but he cant guarantee anything.

Duh.

But come the hell on a little positive attitude goes a long way for the patient and for the treatment. We have arranged a second opinion at Ironwood cancer center in chandler. Which is fine, however she is starting chemo on the 23rd or the monday/tuesday following the port implantation. Usually they wont take a patient in the middle of treatment. I just have to know that this is the right treatment option.

I am also angry we havent gone over the type of tumor. Usualy you get a T4M1SOIFJSADF[PQ0W398 number that apparently is like the type/life/severity of the tumor. We have no idea. The oncologist also said he couldnt say weather the softness of the tumor when the ileo was being performed was a good thing or a bad thing. Arent the oncologists supposed to come at us with our battle plan and armor blazing ready to slay this beastly cancer? I feel like ours has show up with a tin foil hat on and a popsicle.

Ok that may be harsh. He has been great, but I am just concerned. Hes not positive, in my opinion. He states “we will try, and hopefully” a lot. He hasnt gone over the tumor type and CEA numbers (which aparently is fridayish)

Maybe I am just asking for too many answers to quickly…..

The more time goes buy the easier days seem to go. I dont automatically burst into tears in my car anymore, only on really bad days. I just wish I knew the outcome and knew how to proceed. I dont want to spend time preparing wills and asking for handwritten recipe cards from her ‘just in case’ I dont want to talk about what she wants done with this item or these things. I want to spend time asking about how she was as a teenager more, asking what to do with a colic ridden baby when nothing works, how to give the best mom advice when you are terrified of being wrong. I want to spend just more days without CANCER.

 

 

Sidenote: It would be amazing if I could get through ONE post without crying.

 

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.