Monday, July 2, 2012
Post 34: How are we doing?
Phillip has been amazing and has been my rock throughout everything. But he's pretty wiped out too. He started a new job a couple of months ago, and it's been going great! But with learning the ropes of a new job, taking care of me, taking me to appointments, getting my medications, cooking, cleaning, and basically taking on all of the duties of a single parent at times, he's pretty worn out. Elise is amazing. She's so much fun and growing like a weed! She was really sick last week with a virus, but she's doing well now. She's pointing and talking all the time. She's walking everywhere and giggles and laughs at everything. She's basically our angel and she's got our hearts in her hand. We never thought we could love someone so much. As for me...I'm hanging in there. I am completely drained as well. Emotionally I've been in a rough spot. I guess it's because I had a lot of hopes and goals for the summer that didn't go exactly as planned. Our summer has turned out to be a little different than expected.
I had a lot of summer goals:
1) I wanted chemo to be over - unfortunately, we're not quite there yet. I'll explain in a bit....
2) I wanted to make up for all the lost time with Elise. I wanted to be super mommy and play all day, and have loads of fun since I haven't been able to do a whole lot this past year since she's been born.
3) I wanted to spend more time with my friends and family.
4) I wanted to work on getting stronger before my next surgery. Start excercising and feeling better. I've lost a lot of muscle during chemo treatments and I am pretty weak and worn down.
5) I wanted to get my photography business back on track, and focus on new projects for my students for the upcoming school year..
6) Big plans to reorganize my closets. Get rid of old stuff - out with the old & in with the new.
You know, the usual "I'm going to have a super productive summer" attitude :)
Well, my body said "NO - absolutely NOT!!" My body wouldn't allow me to do much more than stay put and rest, while my mind constantly races about what I want to do. It's quite frustrating and upsetting. I am the type of person who doesn't like to sit still all day. I want to get out and do things! But I have been too sick lately with additional treatments. A couple of weeks ago at my last oncologist visit we were told I will need a couple more rounds of chemo. YUCK. It was originally 6 months of chemo, but now it will be 8 months. This really bummed us out. Phillip and I were just celebrating that the hard part was finally over!! We walked into our past appointment with high hopes that I was finished and could schedule my next surgery. I had plans to spend the months of July and August healing and getting stronger, being super mommy.....you know - doing all the stuff listed above.
That would have been too easy. Since I have had major side effects from my chemo treatments, they had to give me some longer breaks in between rounds so I could heal. My hand & foot syndrome was causing the most problems. After each round the whole sole of my foot would blister and bubble up. Then it would all peel and I would lose thick layers of skin on the bottom of my feet. It has been pretty painful and has left me unable to walk some days. But to look on the bright side, I have baby smooth foot soles! It's like getting a deep chemical peel pedicure once a month. (I am sooo lying right now. It hurts!!) When my feet do this, my doctors won't let me start another round until they completely heal. This gets me behind on my treatments. They also had to lower my dose...again. I metabolize this stuff in a weird way and I am SUPER sensitive to the drug. So since I had a longer break between some of the rounds and a dose lowering, they said I have to do 8 months of treatments instead of 6. Not happy. Could be worse though. At least I am here with a great prognosis. And, I still have my hair. That is good. My hair has changed color and texture. It is definitely thinner too. But at least I still have it. The chemo drug Xeloda that I take is pretty good about letting you keep your hair. The other side effects, well, they are horrible. The stomach issues, skin problems and fatigue are no joke. But I am learning how to deal with them as they come. It is what it is at the moment.....
I just finished my 7th month /round and I am beyond drained. Emotionally and physically. It's definitely been getting harder with each round. I have been experiencing a lot of body and joint pain. Lots of nausea, appetite problems, weight loss and extreme fatigue. This fatigue is like nothing I have ever experienced. Getting a gallon of milk out of the fridge to make Elise a bottle feels like I am lifting a ton and running a marathon. I can't carry Elise across the house. Thank goodness she is walking. We have been sending her to school/ daycare during the day because I do not have the strength to take care of her by myself. This hurts my heart more than anything. But, I know she LOVES school though and she gets super excited when she sees her friends.
Since I have finished the 7th round, I will have about a week off before I start my 8th round. We are planning to go to the beach with my mom and sister and her husband to have a little down time. This will be our first trip to play at the beach since Phillip and I went on our honeymoon. We can't wait to see how Elise will react to the sand and water! So we will have some time to rest and hopefully re-coop a little bit before this last round. I will then will have a visit to Shands on the 11th with my Oncologist and my surgeon, and then I will start my last treatment.
I will keep everybody updated after my appointment. So as of right now we are just living life and trying to savor every good moment. Happy 4th of July everyone! Lots of love to you all.
Posted by Meredith