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.
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