Life Archives - Page 62 of 92 - Ashley Hackshaw / Lil Blue Boo

White Coat Syndrome

January 6, 2012 by Ashley Hackshaw

I barely slept at all last night. My bones still hurt. Mostly just one leg…..right in my femur. I got up to pee this morning and I’m not kidding, I couldn’t get up. I felt like my leg would break. Thank goodness Brett was still home and he literally had to lift me up off the toilet. But he’s so sweet…he doesn’t care. I can’t stand feeling helpless like that though. After some pain medication I was good to go for the rest of the day though. I called Dr. L…..but I have phone issues…..here’s how a typical call to the doctor goes:

Thank you for calling the office of _____.
If this is a life threatening emergency, hang up and call 911.
Hmmm…..I don’t think it’s life threatening. Yep, probably not life threatening.

If you are calling to talk to the doctor, or about a hospital stay press 2.
Oh crap, am I calling to talk to the doctor? What if they page him?! I just want to talk to a nurse! This isn’t an important enough question for the doctor. Well, I’m definitely not calling about a hospital stay. Oh great, the whole menu just finished and I didn’t hear the rest of the options.

(repeat menu)

To make an appointment press 3.
For the lab press 4.
For billing press 5.
Ugh, what do I push? Why aren’t there more options? I NEED more options!

Then I hang up in a panic. And then call back again.

If you are calling to talk to the doctor, or about a hospital stay press 2.
Omg…..doctor….hospital stay…..I just have ONE stupid question! Where does pressing number 2 take me? It’s too vague!

And then….I usually end up pressing any number that doesn’t sound scary…..and pretend I didn’t know what I pushed….and then I ask to be transferred to the nurse’s station:

Nurse: Hello, how can I help you.
Me: Hi, this is Ashley, I’ve been having a lot of pain in my leg….and well…..um…..I just wanted to make sure that it was normal. Is it normal? I mean, as long as I’m not going to die from it….um I don’t want to waste your time at all….so if you think I’m okay, then I’m okay and I’ll just see you Tuesday…..so, um….am I okay?
Nurse: It’s normal.
Me: Okay well, I don’t want to disturb the doctor…I mean, I know he’s busy. He’s busy, right? What does he say when other people call about this? My bones aren’t going to explode right? It’s just from the Neulesta shot I bet. Yep, I think you gave me some information on that. Oh gosh, I’m so sorry for bothering you. Well….have a great day! Thanks so much.

And I hang up…..feeling like a complete neurotic nut.

I have this phobia of disturbing doctors. I have a phobia of being that patient that calls for no reason…….so I “under” call.

Over Christmas, I needed to ask Dr. L about whether I was going to be scheduled for a port. I was discussing it with my father-in-law (who’s a cardiologist at the same hospital) and he said he thought Dr. L was on call.

FIL: Just call the office and ask if Dr. L is on call.
Me: Ok.
(dial number)
Operator: Dr. L’s exchange, how can I help you?
Me: Hi, is Dr. L on call this weekend?
Operator: Yes.
Me: Oh….okay, thanks. (I hang up)
FIL: Is he not on call?
Me: Oh he’s on call.
FIL: Well, why didn’t you leave a message?
Me: You just said I should ask if he’s on call…..I didn’t know what else to say after that!

I called the exchange, asked if the doctor was on call and then hung up. Super phobia. It’s ridiculous. It’s why I take an entourage to most doctor’s appointments. Everyone else makes sure to soak everything in and figure out when the doctor should be called……because apparently I need a detailed flow chart in order to make a decision when I’m on the phone.

I hope no one from Dr. L’s office reads my blog….because then they’ll be on to me.

Crazy Cancer

January 5, 2012 by Ashley Hackshaw

I got some REALLY good news yesterday. My HCG levels dropped to 37 this week.

That’s HUGE.

Why? Well, the markers for choriocarcinoma are the high production of HCG (human chorionic gonadotropin) and my HCG levels had been slowly dropping for so long…..so painfully slow…..that I seriously thought I’d be on the methotrexate regimen for years. During those first 8 weeks of methotrexate it had also spread….so maybe my tumors were growing a little in new places and getting smaller in other places and averaging out to those small drops. Who knows. What I do know is that the type of cancer I have is the most invasive malignant disease known to humans. The cells it originates from are specifically designed for reproduction and multiply extremely fast….but it also responds extremely well to chemotherapy. All of that combined made the switch to EMA-CO an easy decision, even if it was right before Christmas.

Basically, I stay on the EMA-CO until my HCG levels are less than 1…..and then there are 3 more cycles after that to make sure the disease is eradicated. The curve isn’t linear so I can’t wait to see what they will be next week. I always try to predict it. I’ll be super positive and say my levels will be zero

I start the whole cycle over again on Tuesday. Tuesday is my 8 hour day at the infusion center…..hope they are ready to have me ALL day again.

****

My mom and I went to LA yesterday to finalize a fabric order. It had to be done….and it was exhausting…..but we had about 5 hours in the car of quality girl time which was awesome. My leg and hip pain is almost unbearable today though….but only in one leg……maybe it’s my white blood cells bursting at the seams. My WBC count was 24,500 on Tuesday (between 4,100 and 10,900 is normal) so I was feeling like I had permission to do anything and everything I felt up to. On the trip yesterday, I left a trail of hair in my wake….sorry LA. My ponytail is still looking pretty good (as depicted in my “back” self portrait)…..it just feels so thin all the sudden. Brett said he found hair ALL over the house yesterday.

My mom and I talked a lot in the car about my time at Loma Linda and my surgery in October. I asked a lot of questions about the night of October 21st and what her experience was. Her most distinct memory is of Dr. R coming out of surgery to talk with everyone…..she pretty much remembers it word for word. Anytime a doctor uses the word miracle I think it’s pretty amazing….it’s definitely not a clinical word. The surgery was also a lesson that I know my body better than anyone. Leading up to the surgery I’d had nauseating pain on my right side….it never felt right. I knew going in that I was going to lose something. Brett too. He was adamant about donating blood.

****

I had some visitors today. My sister-in-law Carolyn brought me her hand-me-down magazines. My friend Aileen came over to chat a bit. She’s undergoing treatment for breast cancer and it’s great to be able to talk about chemotherapy and wigs etc with someone who is going through the same thing. While we were talking I remembered this movie I’d watched back in 2006: Crazy Sexy Cancer. It’s a documentary about a woman diagnosed with an incurable cancer…..and her journey for healing. In this movie Kris is determined to survive, regardless of her diagnosis:

Image from Crazy Sexy Cancer

Thank you for the prayers! Boo says every night “I pray that Mommy is healed from the top of her head to the tip of her toes.“

#losingmyhair

January 3, 2012 by Ashley Hackshaw

Well, the movies got one scene right…..you know where the girl is brushing her hair and then realizes a huge piece has come out? Yep….that’s how it happens. At exactly the 2 week point since starting the new chemotherapy, EMA-CO, my hair is starting to fall out. It’s more like my brush gets caught on a large tangle and instead of stopping the entire tangle keeps moving and with barely any resistance at all comes out.

My entire sink was filled with hair last night as Brett watched me brush it from the bed. He kept asking “are you okay? are you sure? how much is in the sink now?” It’s just hair. I think it may have been more traumatic for him. I told my mom this morning and she said “I know, Brett told me.” And then she asked if she could have a lock as a bookmark……I told her I’d braid her up a nice tacky one. I decided to pluck my eyebrows this morning and they seemed to come out a little easier than normal. Maybe I won’t have to shave my legs soon or get a bikini wax.

I can’t stand the idea of my hair being all over the house. I put my hair in a pony tail today. I think it’s almost time to cut it all off. I’m just holding out until I’m sure it’s all going to fall out…..because I know if I shave my head before that point it won’t fall out. Almost every chemotherapy drug they gave me said HAIR LOSS as a side effect. BUT, they all said DIARRHEA too and I’ve never been so constipated in my life…..so they were wrong on that one. I’m thinking of buying stock in an enema company.

I’m not scared of going bald. I think I’ve already let go of fear and anxiety……now I can let go of vanity. Monks shave their head as the ultimate rejection of all things material, to let go of ego and start anew. In the military it’s a rite of passage. I can look at it as a new start. I’m reducing “drag” on my journey. Plus, I think humility is the most underrated virtue.