Since hospital stay update~

Cindy:

March 24,2014

Tuesday

So it's been a couple of weeks since mom 's been out of the hospital and she's been doing ok.

Her lungs still aren't sounding that great and blood pressure has remained in the 90/70's range, but Iv hydration at home is keeping it from getting to low. 

My sister took the kids for the weekend which made it easy to take mom to her favorite place on earth " the casino".

Battling nausea has been a little more difficult then usual for her but overall things are looking better then they were a few weeks ago.

We Finally got her FoundationOne report and although we haven't met with the Doctor as of yet, it seems 

Only 3 genomic alterations were identified.. 

Kras Amplification

TP53 R273H

CDH1 Slpice site 1308_1320+11del24

Of the three, The Kras amplification is the only one that has an FDA approved therapy called Trametinib that could potentially be beneficial. 

All measures necessary, please~

March 6, 2014

Thursday

Mom started sweating profusely and complaining of shortness of breath and became very disoriented this afternoon.

It scared us enough to call an ambulance to take her to the hospital to make sure she wasn't having a heart attack.

In that moment, I felt torn not knowing whether to join her in the ambulance or pack the kids into the minivan.

Luckily my brother got there just in time to climb into the ambulance with her, and his girlfriend volunteered to stay with my kids so I could follow.

Now just sitting here with my sister waiting....

A few hours later....

Still waiting on the doctor.

So far they've done an EKG, chest X-ray, chest ct and a lung ultrasound and have ruled out a pulmonary embolism which is good. 

She's resting pretty sound except for the random things she's saying.

It's starting to look like she may have a lung infection and so their starting her on antibiotics for now.

They've officially admitted her so they'll probably keep her for a day or two we'll see. 

March 7th, 2014

Friday 4am

Hasn't even been 24hrs yet and she's already trying to convince me to take her home for the past hour because she's feeling better already. 

If only I could take the oxygen and antibiotic drip to go at 4 in the morning wouldn't it be nice?

8:30am

Doctor just let me know she has Pnemonia and they'll most likely end up keeping her for the next 3-4 days.:-(

Few hours later..

Different doctor comes back and saids she does not have Pnemonia and they'll be sending up a pulmnologist and cardiologist up to speak to me.

March 8, 2014

Saturday

So after a long sleepless night of twice an hour vitals my mom's blood pressure has finally stabilized. 

I have absolutely no explanation for yesterday's occurrence as of yet. 

One minute she was fine and then in the blink of eye, rapid response was being called and a crash cart was being brought to the room "just in case" while my sister was being asked mom's directives which are in her words to be kept alive by "all measure's necessary" in case she were to code.

I can't begin to describe to you the angst or guilt I felt in not really preparing you for this moment. 

But I have to say when staring in the face of adversity, as usual you absolutely held your own and made me so proud.

Meanwhile I'm 20 minutes away receiving a panicked call from the nurse telling me mom's bp has dropped pretty drastically to 70/40 and they'll be transferring her to the ICU If it continues to drop.

Time like in a movie stood still as I played out all the worst case scenarios in my head.

Unable to leave little Vicky to rush to the hospital, I spent the next 1/2 hour calling all of our immediate family to let them know this might be it.

As I drove through tears, I made a pact with god as I often do these days promising this for that, if only he gave us more time.

Family rushed from all over the city to gather in her room while she slept, just  hoping her bp wouldn't drop any further.

I had the kids picked up and brought to the hospital to see her because as crazy as it may seem, If this was it, I didn't want the last memory they had of mom to be one of fear when she was rushed to the hospital in an ambulance.

She was awake periodically last night for a few minutes at a time but long enough to hug and kiss the kids and exchange I love you's. They wouldn't allow Ellie in at first, an hour and several phone calls later to everyone from the doctor to the hospital admin they finally let her come in, which definitely perked mom up for a bit. 

So here we are today and although her bp isn't exactly where we want it to be it's getting there and she's gotten up once or twice so far and seems to be doing a little bit better then yesterday. She just keeps saying she isn't ready to go yet because there's no way she's letting us get off that easy without having to take her to the casino for her birthday next month.

They just wheeled her down for several more tests and an Echo giving me some time to give you more of a detailed update.

Just now...

Pulmnologist came into the room and told me she does have Pnemonia.

All I can say is "Wow, people are you sure or am I just being punked?

Nothing Personal, F$&% Cancer~

March 3, 2014

Monday

Cindy:

Today is chemo #25 for mom and she has been in an exceptionally great mood considering.

From waiting to have her blood drawn till the minute we sat down with the doctor she was joking with everyone from the nurses drawing her blood to other patients in the waiting area. 

About 10 minutes into our wait to see the doctor to go over her ct results, a man in his 50's who had been sitting across from us quietly just listening and smiling approached us and asked mom if he could ask her something personal. He proceeded to ask her what kind of cancer she has and what stage. 

Mom said,"that's not personal at all" and talked to him about everything from Stage 4 Stomach cancer to chemo to smoking marijuana:-) which she doesn't do herself, but is a total advocate for.

Everybody sitting in the waiting area listened too her as she spoke and as I looked around the room I noticed other warriors agreeing with her, nervous family members seeing hope through her for their own loved ones and myself tearing up because it took me back to a time when mom was the one asking the questions and I realized just how far we've truly come. 

Next thing I know I hear mom say "They gave me 3 months to live and it's been over a year, So Fuck Cancer! Everyone started laughing hysterically and repeating Fuck Cancer!" 

Luckily our beeper went off just then and we went in to meet with her Onc who had this to say..

So although "No Significant Change" It's significant to us and that's the way we like it.

So just like mom said "F~ing cancer, take that!" :-) 

Hell, if I'd known that....

Here are some things a lot people new to this cancer journey may now know about.

Resources available to them or just things we've learned through trial and error and wish we would have known sooner...

Did you know as a caregiver you can give hydration at home to your loved one provided they have a picc or port, a doctor's order and training usually taught right in your home?

Did you know that Curos protectors

help reduce the chance of picc and port line infection whether in a hospital or home setting?

More info can be found at http://www.curos.com

Did you know that on the weeks were there aren't chemo appointments, you could request a nurse come to your home to change their picc or port dressings and possibly save them the trip to the hospital if their not feeling up to it? 

Did you know that in some states you can receive a paycheck to stay home to care and be a personal assistant to your loved one through the department of aging?

Did you know that in some states nutritional drinks, adult disposable underwear and medical equipment from walkers to shower chairs to hospital beds are also covered by some insurances?

Did you know when it comes to ct scans and Mri's, those reports are usually available within 24-48 hrs from the time of the procedure, and the patient or caregiver with a power of attorney are completely within their right to request a copy of them from the medical records department? 

Doesn't mean you shouldn't read them with a professional wish I highly recommend, just that they are available to you if you so desire.

Did you know that when in the hospital you have the right to request a new disposable cuff or to have the cuff being used be sanitized properly?

Did you also know cross contamination of diseases like MRSA and VRE are very common in hospitals or even homes, were equipment aren't being properly sanitized from patient to patient?

Did you know you have the right to ask any medical professional to wash their hands before putting them on you?

Did you know that the normal range for 24-hour urine volume is 800 to 2000 milliliters per day (with a normal fluid intake of about 2 liters per day), Whether Iv or oral.

So If your loved one has a catheter in place don't be shy to take a look at their foley bag to make sure their kidneys are doing what their supposed to ( getting rid of all of those toxins) and letting a mmedical professional know if their not.

Did you know that 1.5 million people are harmed by preventable mediation errors every year?

 Don't be afraid to ask questions like what medications are being given and what for. If your not satisfied with the answer know you have the right to refuse and don't hesitate to ask for the doctor to come talk to you.

Did you know that a social worker at your hospital can help you apply for a disable placard for your car if your having difficulties walking great distances?

Did you know that your are your own best advocate?

Don't be afraid to ask questions and hold others accountable for their actions, because after all it is you or your loved one 's life they hold in their hands.

If you have any Did you know's that I failed to include and left out please feel free to email me at the6thopinion@gmail.com or comment below and I'll add them to this always growing list..