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.

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!

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.