Friday the 13th, December 2019 - NEW CHEMO

New Chemo Cocktail Time
(CMF - Cyclophosphamide, Methotrexate, and 5 Fluorouracil (also known as 5FU))

Took the wife to start her new chemo on Tuesday. Dr wants to add a 4th drug to the cocktail, but he needs to fight the insurance company so that drug will be added down the line.

It did not go well.....she threw up for 24+ hours after the chemo....could not eat, could not take any of her meds as she would throw up almost instantly after ingesting anything even the smallest amount of water. Finally she agreed to let me take her in for fluids and iv anti-nausea 2 days after chemo.....ended up leaving the house over an hour early as she started going south fast. Got her there and 5 nurses surrounded us and took care of my girl (LOVE OUR ONCOLOGY NURSES)!!!

She's still miserable and nausea is still bad, but she has been able to take her meds and eat VERY small meals VERY slowly (as in 1 to 2 spoons worth of food at a time only). Sipping water when she can.

I'm stressed beyond belief & exhausted...so much to do this weekend, but I will get it done and hope she gets some good rest while I'm out shopping, doing laundry, taking dog to the vet, etc...

I'm kind of coming apart at the seams....but I keep on going....what else can I do.

Thankful Thanksgiving 2018

This week is Thanksgiving, and I have not updated in Quite some time.....it's been so crazy, I'm doing this in bullet points....please forgive me....this year has been CRAY CRAY!

October 2018
We discovered tumors wrapped around T's spine in 3 places. Cervical spine (top of spin) all the way down to mid thoracic (just below middle of back). Untreated it would result in paralysis, so no choice but surgery.

Crazy part...we thought she had a pinched nerve, complained to oncologist for awhile until he finally recommended we see an Ortho. PA....as luch would have it she was out and the best freaking Neurosurgeon in the hospital (my opinion), with 10 years as an Attending under her belt, had that morning started to do "clinic" in that office once a week.

THE SURGEON.....We loved her instantly.....the 1st words out of her mouth when we got down to business were, lets do some tests, because I don't like to change anatomy unless we have too, but if we do have to, I'm who you want. She was Confident but no arrogant, compassionate and kind....4 hour surgery had to be booked fast. Other's gave up their also important but not so urgent surgeries for us. It was booked at the Hospital I started my career at and so I was glad as I felt quite comfortable there. I still work for same Hospital System (we got bought out) and I knew most everyone in that hospital. This surgeon has since become a friend who I have insisted stay on T's care team. She is brilliant and caught what everyone else missed right away and saved my girl.

THE SURGERY.....so many fears.....would she live?.....would she be paralyzed?......how would I be able to care for her and keep my job? how would I get her up to out 3rd floor, 3 room walk up? The surgery was 4 hours with a nurse texting me progress updates from the OR.....I walked the entire hospital more times than I can count, never stopping to eat or drink or anything......mind racing the whole time.

FINALLY....I get the text that the surgery is over and to come to the desk as the doctor will be out shortly. They took me to this glass room with curtains a table and chairs and told me to wait there for the surgeon who would be out to speak to me herself. I was terrified....back in the day, they only put you in the fish bowl (glass room) if the news was bad......as it turns out, they now do this for everyone, for privacy. I sat head in hands waiting....I heard the door slide open and the doctor stepped inside.....before she could speak, I jumped up and asked....
ME: Is she alive?
DR: Yes!
ME: Is she paralyzed?
DR: No

She was so kind and compassionate and explained everything, and that we would keep her in the hospital for about a week (a few days longer than usual) knowing we live on a 3rd floor walk up and wanting to make sure she was ready for that

THE WEEK: I moved into her hospital room with her, going home for a few hours a day to care for the dog, shower, change and come back to sleep in the chair next to her. She made slow progress, but it was comforting having a whole spine team looking after her and out doc no matter how late, came to see us herself because she promised she would....we told her to stop that and we were ok with waiting until morning on long days.....the woman has integrity.....besides, if we needed her, I had her cell phone and the staff would check with her for orders.

DISCHARGE DAY: Scariest day of my life!

Caregiver Self Care

"You cannot be a good caregiver for T, if you do not take care of you"

I've heard this from everyone. People take one look at me and ask, "are you doing anything to take care of you?", or "Are you taking time for you each day?" The answer is for the past 8 years has been, NOPE. 

That needs to change and I am making it somewhat of a priority. I know, I know….that “somewhat” shouldn’t be there, but it is, so there you have it. 

OK, I've had some medical issues. A racing heart (I believe from stress). The medical stuff is easy. I went to the ER when it got scary, I had EKGs, an Echo, a stress test, and just finished wearing a heart Event monitor for 30 DAYS! Yes, it sucked wearing that thing and sleeping with it on for that long. Now I will follow up to go over all the results and be evaluated by the cardiologist. She's leaning to its stress, I think/hope…..so that I basically just need to chill the f#ck out.

My problem is I seem to be....well....I'm not handling things as well anymore. Heck, after T's surgery when they sent her home with just me to care for her, I was terrified! I was trembling as I talked to the doctor about all the things I had to do to care for her wounds etc…I’ve not been myself since.

I used to be the person that no matter what I was going through, I had a smile on my face, a wiseass remark at the ready and I never ever showed weakness publically. You could have stabbed me and I would not give you the satisfaction of a tear. I have lost my ability to control my emotions.

I get so overwhelmed at times my eyes tear up, and it’s all I can do to keep my shit together when I’m at work. Thankfully I work in a cubical staring at a monitor all day, invisible to the others doing the same around me.

So, I’m making a real effort to…

·        make friends.

·        make time for me.

·        learn to deal with my stress.

Trying to make a new friend as an adult is not easy. Fate had me stuck in an emergency room with a coworker for 10 hours. In that time I learned she was a really cool, funny, and kind person. The kind of person I like to be friends with. So, I am making an effort to become friends outside of work. Both of us have busy lives, so this is proving to be harder than expected. We haven’t even managed to have a cup of coffee together…LOL…but what the hell, I’m trying. 

Making time for just me, is even harder. I feel guilt leaving T to go do something by myself, when she is too sick to leave the house. I shouldn’t. She sleeps most of those days away, and what’s the point of me sitting alone while she sleeps? I do sometimes take a drive after running errands for us, like laundry and food shopping, before I head home. Just listening to music and driving around a little. Better than nothing. It’s also hard because I don’t have a lot of friends I can just call and invite to do something on the fly.

As for my stress, I took Dr A and the patient navigators at the hospital up on their offer to give me 6 free therapy sessions and more if I want them. She is encouraging me to make friends, take me time, and deal with being a caregiver and all that entails…the worry, being scared, imagining what my life will be like when I lose her, not knowing when that will be. I’m mourning a woman who is still alive, and I hate that….she’s helping with that too.

That is all for now.

Feb. 25, 2019 - Update

It's been awhile people....

1 YEAR AGO?: After many chemo therapies.....none of which worked....we finally found a chemo that is working in some places. It involves Progeta, Gemzar, and Herceptin (which she is allergic to, but helps the other drugs do their job).

It is working only on the tumors in her lungs.

OCTOBER 2018: We've had a rough 6 months.

T had been complaining for months that she felt like she might have a pinched nerve causing her pain in her right shoulder blade. Oncologist didn't even think to order an MRI, but did EVENTUALLY refer us to an Ortho. PA. As luck would have it, the PA had to cancel and we were seen by an amazing neurosurgeon, who saved T from pending paralysis from the neck down.

Amazing neurosurgeon, who I will refer to as Dr B going forward, ordered an MRI and we discovered that not only had the cancer spread to her bones, there were 2 places on her spine where there were tumors wrapped around her spine. One in cervical and one in mid thoracic spine.

What we learned was that when Cancer gets into the bones, or wrapped around them. It actually turns the bones to a gel like substance that is then absorbed by your body and those bones are gone....scary stuff!!!

Our choice was surgery or pending paralysis.....so we stopped the chemo that was working on the lungs mets to prepare. Then we discovered that the lower tumor on her spine had caused so much inflammation and swelling that is actually broke the bone, hence her tremendous pain. They put her on steroids to get the swelling down before surgery, and we got lucky. The swelling went down enough where the bone actually started healing itself.

OFF TO SURGERY WE WENT.....4 hours, during which I lost my mind with worry. They escorted me into a glass room with the curtains drawn and told me the surgeon was on her way out to talk to me. It felt like an eternity, but was actually probably 10 minutes. because I work for the health system that owns and runs most of the major hospitals in CT, I started to freak out. It used to be that they only put you in the glass room to talk, when the news was bad. I was scared she might be paralyzed, or dead.

The doctor walked in...

ME: Is she paralyzed?
DR: No
ME: Is she alive?
DR: Yes and everything went as well as can be expected. we got the tumors out, but we can't be sure we got all the cells, so we will have to plan radiation after she recovers for awhile.
ME: I thought you were going to tell me...at the other hospital, they only put family in the glass room to give them bad news.
DR: we now put EVERYONE in the glass rooms to talk to them in private now.
ME: WHEW
I hugged the stuffing out of the surgeon
(I don't remember the rest of that conversation.)

I moved into her hospital room with her were we stayed for the next 4 or 5 days...not sure how long it was....it's all an exhausted blur. i ran back home for a couple of hours a day to care for the dog.

When they were to discharge her, she was weak and unable to care for herself, and I was terrified to be taking her home all by myself. I had made arrangements to work from home for awhile so I could care for her.

FEB. 25, 2019 :

• Healed from surgery well, but still weak and still some pain.
• Did radiation to upper spine spot.
• Neurosurgeon discovered that one of T's pupils was larger and less responsive to light than the other. Not explainable by meds or anything else. So everything on hold again.
• Brain MRI to see if there is a tumor or something putting pressure on her eye.
• MRI says no tumor or intracranial pressure (whew) Lost my mind waiting a week for those results.

NEXT STEPS

• Cleared for steriotactic radiation on lower spine. Much stronger than regular radiation, but only 3 sessions needed. Need to book that.
• T may have hardware issue as upper back shows some tenting, so new CT Cervical and Thoracic ordered for surgeon. Hoping we do not need to open her up again.
• Oncologist wants full PET Scan to check on cancer everywhere except the bones.

OTHER
Chemo continues....we are on round 4 and she is still not strong enough to add the Herceptin and all the steroids that go along with taking a drug your highly allergic to.
I am back to working in the office
She is not strong enough to drive yet so working off-site on days she has appointments and chemo, so I can be with her.
Chemo is making her so sick, she is not eating much and has lost over 30 lbs.

ME
Stress affecting me Physically after 8 years. Pissing me off and scaring me a little. I've been a tough cookie and handling everything like a champ until now.

My heart started racing a LOT, making me dizzy and causing me chest pain and fear of a heart attack.
Went from work to Emergency Room one day (a 10 hour ordeal. Thankfully an amazing coworker took me and stayed with me). Since then had an echo, a stress test and wore a heart monitor for 30 days. Seeing cardiologist in a week, but like me, she suspects this is just stress. I have been sinus tacky for 90% of my days...which is just a fancy way of saying my heart is beating too fast. I'm also skipping beats and double beating at times. Makes me wicked dizzy at times. Going through the motions to make sure I'm ok.

I went to a caregiver support group with Dr. A facilitating. After she heard my update, Dr A went to the hospital patient navigators without even telling me and called me later that night. She does individual therapy for caregivers and grief counseling at $175/hr. which I could never afford. The navigators have an Angel Fund for caregivers and are paying for me to have 6 free sessions with her. How cool and sweet was that? I'm doing phone sessions once a week and they said they can give me more sessions if I want.

Trying to take care of me so I can keep taking care of my girl better. I haven't taken care of me in 8 years. Also trying to make new friends, which is hard as an adult. I'm picky about friends. they have to be compassionate and have a sense of humor.....harder to find then one would think. I'm a computer geek, so I am awkward and weird, which makes this extra hard for me. More on this in next post.