Thursday, November 22, 2007

ThanksGiving

My family has a tradition that each Thanksgiving before we eat, we go around the table to say what we are thankful for. Usually my brothers and I have a smartass comment to lighten the mood. Today, however, I'm not sure that I will be able to do that...not because I'm not thankful, rather the opposite. When I think about how thankful I am, it is an automatic tearjerker...and I don't want to cry at the thanksgiving table!

So, here's a small list of what I am giving thanks for this year:

*My family~of course. When I was diagnosed, I thought that I could do this by myself...I was still debating moving across the country. How wrong I was! There's no way I could make it through this without their support and them literally taking care of me and waiting on me hand and foot. I have dinner waiting for me after 12 hour shifts of work...(which is probably the only reason that I eat at those times, because I'm so tired!) and I haven't really looked at my bills, as they stress me out so much, my dad is taking care of them for the time being....need I say more! They're the best!

*My original doctor who took me seriously, fit my appointment into a tight schedule (I was moving), and comforted me by using humor and kindness when I was diagnosed,

*My friends who showed up at my door 5 minutes after I told them the news. They swept me away and helped me to plan my next few days. (I was due to move the next day and was sitting in an empty apartment)

*My friends who gathered the next day to bring me to my CT scan, help finish cleaning my apartment, and moved the rest of my stuff into their houses until we had a better plan, and then brought me to the airport so I could be home with my family.

*My friends who let my mom and I stay in their apartment while going to many doctors appointments at Hopkins, and who were most hospitable!

*The insurance coordinator at JHU who worked with me for months, and was my go-to girl when I couldn't get an appointment or had any sort of questions...she always figured it out for me..with a positive attitude...an was a huge support when I coulnd't think!

*All of my visitors after my surgery at Hopkins. I think there were about 30 of you who made my stay almost fun (with the help of the PCA!) I met a ton of great people at school and through working at Hopkins, and am just so grateful! (ps...I missed the ball on the thank you cards to all of you...I started, then realized too many addresses were changing at the time!...but please know that I THANK YOU).

*My old apartment manager, who gave us a deal on renting apartments for my family and me following surgery, and during my recovery period.

*My friends at home, who immediately took me back in and helped to ease the transition back home. I am grateful for all of the weekly dinners over the summer and for all of the wonderful and understanding listening ears you've provided.

*Ok...I haven't been using names..but this is my one exception. My friend Deanna, who has been right by my side through this all. She and her husband started off by selling bracelets as a fundraiser for me, and she's been incredibly supportive ever since. She is always checking in and accompanying me on small adventures. She is very intuitive to know when enough is enough for me...and makes it okay. She's just great!

*My job...when I moved home and needed insurance...I thought...'who would hire me?'...so I applied on an oncology floor, as I figured they would be the most likely to understand... and I was right! My preceptors are fabulous, and are constantly checking in with me to see how I'm doing. My managers are the same. They have made it so I only schedule myself for 2 weeks at a time, as my chemo schedule sometimes changes, or my healing process is delayed. And, I found out this weekend that my manager emailed my coworkers, asking them to donate any extra time off to me. How kind is that?

*My job...again..as it gives me another focus. It's much easier for me to worry about other people than it is to worry about myself!

*All of my friends that have made trips up or over to visit me! Its always good to see old friends, but sometimes its hard to find a time to do so...so I really appreciate that you were able to do so. Plus, its also a good distraction.

*On that note, all of my friends who have tried to come and visit, who I've denied due to being too sick. Thank you for understanding that I want to show you VT when I feel good enough to get out of bed!

*My oncology nurses and doctors who are taking good care of me! I always feel bad because I have this terrible connection in my mind with the oncology clinic, however the people there are wonderful! My nurses frequently go out of their way to find me answers and make me comfortable. One of my nurses even gave me a card for being 3/4 done the other day!

*My support group and therapist...who give me a great perspective and ongoing, nonjudgemental support.

*My friends far and near...who give me and my family continual support through calls, emails, snail mail, texts, blog messages etc. I usually get a card every day, some from people that I don't know....and it really makes all the difference. It's really the small showings of support that mean the world and make this crap bearable!!

*And finally my extended family who have pulled together to show their support in many ways (through visits with long talks and massages, cards, prayers, calls, emails, thoughtful gifts, and giving me something to look forward to in my down times -cruise planning-)

Now...I know that there are many more things that need to be added to my list...but it's almost time to eat! So, please know that I am grateful to you all for reading my blog!

Happy Thanksgiving!




Tuesday, November 13, 2007

Date Day

Howdy!
Things here are looking up. In fact, today I put on real clothes (rather than sweats or scrubs) and took myself out on a date! I went to the movies by myself...and it was kinda fun! When I was younger, I always felt bad for people who were at the movies by themself (and people eating in the lunchroom by themselves)...but it was liberating and I'll definitely do it again! I mean how much talking goes on in the theater anyway?! I splurged on popcorn and a soda (we'll see later how the popcorn likes the ol' colon)... and watched Gone Baby Gone! I highly recommend it if you like a good mystery and a HUGE ethical dilemma (Beware...its a Boston movie...so there are a ton of F-bombs dropped).

That's really all I have to share at the moment...just wanted to recommend a good movie, because there are so many bad ones out there!

Warm thoughts to you!

Sunday, November 11, 2007

How I spent my week...

So...I spent the entire week in bed. Let me tell you...it's depressing and lonely (I mean Molly is some company...but I'm finding out she's really a selfish cuddler...she conveniently places herself where she wants to be pet). This nastiness is usually the part that I don't share...as I don't usually talk to or see most people when I'm feeling this way. But....today, I guess I'm feeling like sharing...so here's a most beautiful picture from last evening. (I did debate whether to show myself looking like such crap...but my mom assured me that I actually looked good compared to the previous 3 days.) Anyway...the good thing is...I do get to a point where I feel better.... then I partake in a little shopping therapy...and all is well again!

Friday, November 9, 2007

Bored and Lazy

Hi all! I'm bored! This is the first day of the week that I haven't had to be at the hospital for some reason or another (none of those being work)... and I'm not sure what to do with myself. Not that this is a huge dilemma, because if I tried to do anything...I'd just get tired and need a nap...but needless to say I feel like I'm wasting time and could be doing something productive!
(I did just get off the phone with my insurance company...as they enjoyed informing me that acupuncture is not covered in my plan...bummer..so I suppose that was productive, as its a question that I've had for weeks.) Anyway, I'm now laying in bed, procrastinating getting up, even though I've been awake for hours. This is partially because I'm scared of any smells that I might encounter throughout my house (I'm currently not nauseous in my room). This is also partially because I know what's waiting for me downstairs....pills and a shot! My avoidance skills are great...until the guilt kicks in....

My 8th treatment is now done. Starting the count-down. Which makes me wonder what my life will be like when this is all over. It's pretty much been my sole focus for 6 months now...what will I be without it? Don't get me wrong... I'm starting to think up a 'Good Riddance' party...it's just that I need this craziness to have some purpose in my life, in order for it to make any sense to me.

But thats all getting ahead of myself...as I have 4 more full treatments left...and the continual side-effects from this last one.

This treatment has been okay. It continues to get more difficult for me to walk into the clinic...we've had to get rather creative to try to trick me. The person who drives and accompanies me to an appointment now drops me off at the front door...so I don't have to deal with parking garage odors. I also have used candles, car air freshners, and other smellies to help with clinic smells. Hospital tape is one of the worst smells for me, so we've started using tegaderm dressings over my port, rather than the tape that comes in the pre-packaged kit. Really...just doing anything that will help in the moment!

Anyway...besides all of this...the treatment has been pretty much the same. I went to my second support group this week...which I'm still happy with my decision to join it. I also continue to be in love with my psychologist, who I try to see once a week. I'm also trying to start incorporating yoga in at least weekly. I'm still going to look into acupuncture...as I've heard great things from other survivors. These are my plans for gaining a little control over my mental/physical health.

So....I thought I'd leave you with a list of medications that I received on Tuesday(random, I know). I was thinking about it the other night when I was falling asleep...and I put a lot of foreign products into my body that day! This is a change for me...as I used to protest taking one pill for a headache. And...this is the minimum of what I had to take....I don't usually take extras..or prns...

Infusions:
Oxaliplatin (chemo)
5 fu (chemo)
leukovorin (part of chemo regimen)
magnesium (to help prevent peripheral neuropathies...not working)
calcium (same as mag)
dexamethasone (steroid..premed for chemo..helps with nausea)
aloxi (nausea med)

Injections:
Innohep SC (for clot)
Lupron IM (for menopause)

Pills:
Emend (nausea)
Asacol (12! for colitis...inflammation in colon)
Ativan (to chill me out..and nausea)

Okay...that's enough procrastination for now...(pills...here I come). Again, thank you to everyone for all of your support! I just feel like I can't say that enough!

Monday, November 5, 2007

Colonoscopy and Halloween Goofiness

Today I had my second colonoscopy in 6 months. I also had an upper GI. So basically, I had scopes (cameras) check out my entire GI tract. Fortunately, my upper GI (esophagus and stomach) looked good and normal! My colon, however, still looks messy. In fact, I have colitis (inflammation) throughout my entire colon (large intestines). This is more inflammation than I have had in the past. They took many biopsies...so we'll see what they show in a couple of days. Most likely this is the crohns that I've been in denial about. The terrible news is that he gave me medicine to take every day (I think I've complained about pills in past blogs)...Anyway..I don't have to take one or two a day....rather 12 a day!!! UGH! I do find the name of the med amusing though...asacol...perfect name for a colon drug.

On a brighter note.... I went to a fun halloween party on Saturday night... so I thought that I'd share some pics...
Not sure I'd let her get near me!
Yea Sox!


I go back for treatment #8 tomorrow... not how I'd like to spend my day/week... but ready to get another treatment behind me!



Friday, November 2, 2007

Inspiration

Hello!
I have some crazy friends who like to wake up in the middle of the night to go hiking. Here is one of their recent pictures of a sunrise hike up camel's hump....


Anyway...after I saw this pic....this has become my goal! When I'm done...I want to see this view! This is what I visualize when I'm feeling nauseous these days. Unfortunately, when I'm done treatment, I may need ice climbing gear! However, come spring mud...I'm there!