Sunday, November 17, 2013

…this is you, underwater.

Dad just posted a caring bridge update. To save time, I'm not going to repeat what it says, you can simply read that here.

I will say that this week was exceptionally hard, as Dad alluded too. Sitting in the ENT doctor's office as she was going through the images and explaining that the damage was permanent, I drifted away. Maybe if I didn't listen and just focused on the sound of the heater she would disappear; be wrong somehow. She was explaining in office vs OR options for temporary fixes (months!). I couldn't deal with this.

You know, people always complimented my voice - oddly, my nail ladies - at three different salons. I kind of wondered if it was like when someone says "you have a pretty face" but deep down, knew it was true. I had a great voice. In fact, when thinking of things I could do for a career if it turns out I am unable to return to my job, I had often thought of writ ing or being a voice over actress.

So here is this doctor telling me that in addition to everything else - the cancer, the spinal taps, the chemo, the MRIs, the months in the hospital, the chemo, the low platelets and easy bruising, the headaches and blindness, the fatigue, the weakness, the forgetfulness, ….. my vocal damage was permanent.

I'm not sure how to say it but somehow this was worse than everything else. This, took away more control, more voice.

I know that my speaking voice is not 100% gone. I know that speaking is not the only way to be an advocate or fight for young adults with cancer - myself and my peers. But, this was particularly hard news to weather.

In addition, tomorrow, as Dad mentioned on the bridge, they plan to hospitalize me to do this desensitization. I hate writing that word -it is annoying to spell out and to say. But, all I can say is I really hope it is only for one day. I tend to feel like hospitals suck you in and they find more wrong with you.

Finally, here are the shots from my underwater session! No voice or eyesight is necessary for these - I could feel the water and movement. Erena is truly a talented artist and I feel honored to have these photos. It was so exciting to get to cross these off my to-see list.

Wishing you all a great week…

Sunday, November 10, 2013


I have no title for today because I have no grand proclamation. I'm still sick. It still sucks. 

Let's make a list. Bad things:
1. Doctors appointments
2. Waiting for shows to go on demand
3. Pneumonia
4. Cancer
5. Missing Amy's bday party
6. That my friends have to work and can only hang out weekends
7. I'm too tired to hang out 50% of the time
8.I had a nap-mare today

Good things:
1. Tates learning not to bark non-stop we hope
2. I can still see out of the left eye
3. Kara is coming Thursday
4. Lisa and Bill are getting us PF Changs this week
5. Robert is coming Saturday
6. I'm awake 50% of the time
7. I did some of my billing
8. I had lunch with friends last Thursday

Okay, honestly, the bad list was way easier to write. Sometimes it hard to remember there is so much good and this is going to get better. I will get better. I will figure out a way to fight through this even though it just feels pretty miserable. 

One very good thing happened since my last post - I was able to do underwater photos! I had thought I would be unable too but because the PICC came out- I did them! I am still waiting for the fabulous Erena to send me edited images but here is a preview of what we did: 

Getting all ready…

New friend!!

Given a chance, I'd so try this again

Deep end!!

Friends xoxo

Now that's a lens.

Special thanks and shout out to for setting up this amazing experience and helping me check another item off my to-see list. It was especially amazing because the team from IHC wore team sweet emily shirts and Erena spent so much time with me. I loved meeting her and the experience was even better than expected!

I guess I had more to say after all. Upon reflection, a lot happened in two weeks. I also ended up at the ER on Halloween night (kidneys weren't functioning up to par and I was dehydrated according to my labs). It was so disappointing because I wanted to see the little trick or treaters. At least Tate got to dress up for a hot second as a hot dog… 

And with that, I'm off- -  thanks for reading


PS. Was watching TV the other night… does this look familiar? Yup, it's New York Pres - but edited for The Mindy Project!