It's all in my Head

Thursday morning was my appointment with the neurologist.  The night before, I had stopped at the lab to pick up the CD of my brain MRI.  He seemed to be very thorough as I answered quite a few questions.  On a side note, he commented on my high arches and gave it a name (he was going to write it down for me, but forgot at the end of the appointment).  He said that "we will deal with that later".  Lots of pin pricks on my feet and testing the reflexes.  I still have some neuropathy.

No signs of MS.  He was actually surprised that my family doctor suggested it.
hmmmm.
No signs of TIAs or stroke.

I've had a history of migraines since I was a young adult, but I haven't had any for at least 20 years. Back then, my migraines would be accompanied by loss of vision, sensitivity to light and numbness around my mouth.  These headaches don't have that. He wants to explore that further.

He ordered an MRV that will show a different view to see if there is a blood clot. I'm waiting for them to call me with the date/time.

My headaches haven't eased up since I complained about them weeks ago.  It's been two years since my vision was checked and I've had trouble focusing while reading.

Eye exam scheduled for Sunday afternoon

Also, I feel like a medicine cabinet and I know that most of the meds have headache listed as a side effect.  He mentioned that my pain medicine will give me headaches. 

What a vicious circle



After that appointment, I went to see my oncologist.  I wasn't scheduled to see her until end of August.  When I got home after work on Wednesday, my veins were extremely pronounced like the last time (hospitalized for blood clots).  1) it was after hours, 2) i've never called her, 3) really didn't want to go to ER .... but, it had me concerned enough to call her.  She told me to come in after my neurology appointment.

No blood clots (not sure how she could tell).  She said it was the heat ... REALLY? It's been sweltering for weeks and my veins weren't bulging.  Then she said glad that I came in anyway, because I have a fungal infection.  REALLY? 

Oh Snap!

She wrote a prescription for 5 pills Fluconazole. More side effects! 

By this time, my head was really pounding





Instead of trying to go to work, I went home and slept.  Which, of course, I didn't sleep well during the night.  The next day (today), I woke up still with a headache.  What's going on?

As today wore on, so did my headache, this time with dizziness.  I left work 2:30 and made it safely home and to bed.  I woke around 5:30 because I really want to be able to sleep tonight.

As I mentioned before

welcome to my roller coaster ride

Aunt Becky's Flowers



By the way, went to work with no scarf or hat.  It felt good! 

Back on Coumadin

This morning, I met Nurse Michael to do a final review on the clinical trial for the radiation treatment. Once the MRI and blood work comes back, we will know if I qualify.  Should know this week!  The computer randomizes the "arm 1" and "arm 2" (6 weeks or 3 weeks).  The "boost" is not a big difference from the standard treatment (1.0 vs 1.5). 

I mentioned to Michael that my symptoms were back from when the port had created the blood clots. Its been about 2 weeks since getting off the Coumadin. So, Michael wanted me to wait on drawing blood and let Doc Esther check things over.  I was holding my breathe a bit because I didn't want an extra test like the ultrasound. I wasn't on the schedule to see her today either.  Mike and I had a great conversation waiting for her.  I like to ask folks why they got into the oncology profession.  He said it was because of his grandma. 

He gave high recommendations of the doctors I have on my team as well.  He said that if he or a family member ever got cancer, he would go to them.  That is real encouragement for me.

Doc Esther came in and sat down in relief.  She had been on the go all morning.  She pressed my underarm and I winced in pain. 

Outcome:  Back on Coumadin

As long as it takes the pain away and prevents a blood clot from killing me, fine by me!

Note to self: Get a medical alert bracelet

I asked her why she was in this field and she said that she loves to learn and loves people more than test tubes.  I just love her! She is real excited that I am taking part in the trial.  She said that is the best way for docs to know what works and what doesn't.  30 years ago, most of it was a guessing game and it was so frustrating.  She also said that the treatments I got were all clinical trials at some point.  I'm honored to be doing it.

Four vials of blood work .... and I expect a call this week for a yes or a no on the trial.

I was so incredibly tired today.

First Follow-up Post Chemo & Hospital Stay

Very long day....but now that I am finally settled in my hospital bed (10:25pm), I'll try to recount the events of today.

My appointment with Doc Esther was at 1pm today.  My blood count (napir) was great and I got the opportunity to ask her a lot of questions.

First on the list was my port and the fact that I had deep blue veins showing through my skin.  It was still tender and sore.  Once she examined me, she decided to have an ultrasound done to check for blood clots.  Her assistant got it set up for 4:00 today and the work order said "Hold patient".  So, I wasn't going anywhere until the test was read and my doctor reviewed it.  So, I waited in the waiting room (good name to call the room) until I got antsy around 5:20p and asked them if I could go home.  The receptionist said my doctor is calling me on the hallway phone.  Doc Esther said that there were blood clots and that she wanted me to report to admitting in the main hospital.  Whaaa???? I wasn't ready for that! No overnight bag....what about my car?.....what about my husband?  (you should call him, she said).....my head is swimming (I know that, dear, but you just need to go to the admitting desk and they will take care of you).

I called Matt to tell him and he quickly made arrangements to get to the hospital.  Jasmine was with him as she was coming over for dinner tonight.  My brother-in-law dropped them off at the hospital so Matt could take my car back home (good thinking sis).  They arrived while I was still in the lobby waiting for my transportation.  We decided to get dinner at the cafe since I would be missing the dinner hour on the floor.  Salad was great ~

While we waited, Doc Esther walked by, saw me, and stopped to explain further what was going to happen.  Cumadine takes too long to take effect in the body, so in the meantime, I am to get shots of Lovenox in my belly. They have kits and will teach us how to self administer twice a day in the belly for five days.  Wow, what a turn of events!

So, I finally got settled in.  Family has gone home. Meds have been given. Shot has been given. Now, I've just settled back with the laptop that mom & Tommy got and listening to the constant beep in the hallway. 

The pharmacist will be here in the morning to show us how to administer the shot.  After that, I should be able to go home. 

I did call the doctor's office Friday about the port, but was told it was normal.  I mentioned that I didn't want to call and bug and Doc said "you have to be a bitch. you have to nag"  So, next time, I'm going to press harder because I did know something was "off" in my body. 

Some of the other questions:

1) pH balance and vitamin supplements (specially Vitamin D): Doc wasn't very keen on either ideas.  She said the kidneys already did a fabulous job of balancing the body.  If I drink milk, then I am probably getting enough Vit D.  Always room for better food intake and I know I need to do better in this area. Feedback?

2) Talked about the bone-crushing effects and the neuropathy. Doc said that each chemo treatment would have a different level of pain and symptoms each time.  She agreed to change my pain meds. (relief)

3) Talked about chemo and radiation treatment....staying on course? or any changes?  5 more treatments, plus 11 more for the Herceptin.  Then radiation.  Any chance we can cancel the radiation? "not a chance, there would be a 40% chance of canzer coming  back if we don't". hmmmmm

My notes are out in the car,  but this is what I remember so far.

My night nurse, Ashley, has been great.  She is personable and told me about her mother's experience (6 years survivor and doing well).  Her brother is studying pharmaceuticals in Germany and you can tell how proud she is of him.

Backyard

Getting tired, so I'll sign off for now.  I'll certainly keep you posted!
Sleep well ~