Insurance Companies!

Most of the day I spent on the phone arguing with people - not really, but pretty darn close. I don't think I had enough energy to yell, but was definitely frustrated! Typically I get my Neupogen shots delivered to my house the day of each Chemo so I can take them the following X days I am suppose to take them. My insurance company wanted me to change from OSO home care (which was doing a fantastic job) to PrecisionRX. I had been working on all the paper work since round 3, now it's round 4 and the shots weren't delivered. Apparently they miscoded the entry (PrecisionRX) so my insurance company wouldn't accept it....but I didn't find this out until Friday evening. Basically, I still don't have them and won't have them until Wednesday. I was able to get a shot from my oncologist today, so hopefully that will hold me over temporarily. What makes me so nervous is that my white counts were down to 2.7 pre-chemo, I can't imagine it has gone up much, just further down....so I am doing everything to make sure I don't get exposed to anything and that I conserve as much energy as possible.

Wow, that was a mouth full and I am still highly annoyed by it. Just reminds me of SiCKO and how right it truly is!

Other then that, I have been pretty out of it and weak. I felt great the day after treatment but it hit me hard on Sunday. Haven't had much of an appetite, been quite nauseous and having the body itches...like there are fleas, but we don't have those and I am the only only itching?!?

I wish I had some great things to report, but it's just not one of those times. I did have some great visitors over the weekend. Dad, Jeannie and Matt which usually consists of movie watching and funny stories. Colleen and Rachel were here from the East Coast (my UConn roommates) they came into town on Thursday so I got to spent time with them when I was feeling good! We drove down the coast a little and I will put up photos shortly.

Chemo # 4

Another one down! Brent took me to treatment yesterday and for some reason it was really a slow patient volume day. He was able to sit with me the entire time - was great to have someone to talk to and for him to experience it all with me. He was asking a lot of questions and helped me to watch my bags - if I move too much, my bags stop flowing (my port isn't straight). So with the extra set of eyes, we flew through treatment - only took 3 1/2 hours. My counts were low, they were at a 2.7 (not moving in the right direction). So I have to take 5 shots this time, yeah! I am going to try to spread them out a tiny bit, take 2, skip a day and then 3. Something like that. I am waiting on my refills to get delivered to my apartment today, I only have 1 here...so I hope they come later today or it might be 1 then skip a day :)

When I got home, I was much more tired this time than I was from previous rounds. Of course that is to be expected, but it definitely lets a little wind out of my sails. I wouldn't recommend watching sad movies when it's times like this, we watched We Are Marshall. I just kept crying, horrible idea! Thursday night we watched SiCKO , not sure if you have seen that one yet, but it shed some light on the faults of insurance companies here in the US and it made Brent and I want to move to another country for the free medical care!! I was able to get some sleep during the day as well as last night, so this morning I am feeling significantly better than yesterday.

I have been talking to my co-workers a lot, it's great to still know what is going on at Olympic Trials. It makes me feel like I am a part of it all. The meet starts tomorrow night, can't wait!
Here are the TV times for swimming:
Sunday, June 29 8:00-9:00 pm ET NBC
Monday, June 30 8:00-9:00 pm ET USA
Tuesday, July 1 8:00-9:00 pm ET USA
Wednesday, July 2 8:00-9:00 pm ET USA
Thursday, July 3 8:00-9:00 pm ET USA
Friday, July 4 8:00-9:00 pm ET NBC
Saturday, July 5 8:00 -9:00 pm ET NBC
Sunday, July 6 8:00 -9:00 pm ET NBC

The past few days....

The past few days have been dramatically different from last week. I finally had some energy and was able to get into the office a few days this week. Olympic Trials starts on Sunday, so I am trying to make sure I can help get done as much as possible before all the teams and athletes arrive at the meet. Make sure you tune into NBC next week for live coverage and cheer on all the swimmers in TYR!! Some of our athletes have bios on (www.tyr.com) clink on the athlete tab :)

Brent has been around all week, so it's been great to have someone to talk to during the day. Other then that, it's been pretty low key. Rachel and Colleen (roommates from CT) will be out in LA this weekend and they are going to join us for dinner tomorrow. It will be great to see them - we have a LOT to catch up on!

I had my blood drawn today, I won't know that count until I go in on Friday. They could call me tomorrow telling me I am too low to treat, but I doubt that. All and all, I am just trying to get each of these days to last as long as possible. I really like the good days!

Weekend

So it definitely took me until late Thursday and Friday to start to come around. I was a little frustrated with everything going on, but as soon as I was feeling more like myself - Brent and I decided to take a little trip. I have to play every day by ear, but Saturday morning I felt up for it, so Brent and I drove to San Diego. As we drove down there, sitting in traffic, I realized how much of the world I missed. I was just looking out the window with a new fresh set of eyes. I hadn't really left my apartment unless I was headed to the doctor and that was all within 5 miles of my house. It was just great to get some air.

My mom is moving out to San Diego in about a month and a half and because of the weather, we had her dog, Penny, sent ahead of time. She arrived this past Thursday. Luckily, Matt and Alex were willing to take on the challenge because they already have a dog of their own, Akira. I really wanted to see Penny because I grew up with her and hadn't seen her in a while. Is was a extra incentive to get my butt to San Diego. I quickly realized what an alpha dog she is and it showed as she kept going after poor Akira! It will be a little difficult transitioning them, but they will eventually work it out. I attached a photo, from Alex, of when they could sit calmly near each other!
Not much changed from my routine in HB, we watched a lot of movies...Matt and I actually started three different movies today and they were all horrible. We ended up stopping all of them short. The day consisted of us moving from the couch to a chair in the backyard. At least I had a dog to sit with me in each location :)

As for me, I felt pretty good all weekend. Just headaches, but beyond that, pretty good. My energy level is still on the low side, but eating normal and less of a fog for sure.

I definitely got a lot of encouragement from the messages, notes and calls for everyone around me. I really appreciate each and every one of you. Thank you!

Tough Round

Not going to lie, it's been a really rough round so far. The past two rounds, I start to feel better Monday or Tuesday...today I am still fighting the nausea pretty bad. My whole body is a lot weaker, appetite a lot smaller and just can't seem to shake the awfulness. I know, great news. I just hope each day I wake up, I will have a good day...so maybe tomorrow will be different?

I did make a decision this week. I am not going to travel to Olympic Trials in a few weeks. I am sure all of you knew that, but I was still in my warped reality that I would be strong enough to go. Keeping myself as my top priority, staying home is best and there will be many more swim meets in my time.....

Matt and I had a conversation this weekend that I can only laugh about now. We talked about how Dr. Chen (my oncologist) told me I could run during treatment if I "felt like it". At first, I was angry and felt a little mislead. Matt corrected me and said, "he wasn't lying to you Erin, you can run if you feel like it. You just won't feel like it!"
Brent and I took a walk tonight, I wanted some fresh air. It took us about 45 min to walk a half mile. I know, SLOW DOWN ERIN! We had to sit and rest about half way through. I would like to say that resting took up a lot of time, but I am just not moving as fast as I used to. I am ready to hear when I will be done. It's one thing to push off a wall for a set of 40 x 400s and know how much longer you have to be mentally and physically strong....and it's another for you to push off with no end in sight. It will be about two more weeks until I will know how many more 400s I have left.

Father's Day Weekend

Jon and Monica were a great help this weekend. It was great to watch the battle of the chefs (Brent and Monica). Excellent food and great company. Although I wouldn't say I ate a lot, but each day gets a little bit better.
Most of the weekend was low key, I seem to get worse towards the end of each day. Slight headaches and upset stomach, but not to the point where I was getting sick, just incapacitated. The couch is my best friend during most of these days.

Saturday morning, Matt drove up. He wanted to make sure he spent some time with Jon and Monica while they were in town...and of course to hang out with me :) We watched some movies and had some good laughs. Matt, Dad, and Jeannie came over on Sunday for Father's Day....we had brunch, watched the Sox game, then the Celtics, and BBQ. Does a Father's day get any better than that??
I have definitely noticed I am more weak after this treatment. My reserves are getting a little depleted. I will get smalls boosts of energy during the day and then crash. I am getting discouraged a little - I want to know how much longer I need to mentally stay strong...how many more times? I know I won't have answers for a few more weeks, but it's hard to roll out of bed some morning without knowing that. Brent is done with school, so he will be around for the next few months, perfect timing. I will definitely need that daily support!

Chemo # 3

Jon and Monica arrived last night with a basket of goodies and books. It was great! Jon, Monica and Brent took me to treatment this morning. They were able to walk into the treatment area - so I could show them where I sit, the set up and so on. It makes a lot more sense to people when they can see the entire picture. Since they couldn't sit with me during treatment, I suggested Brent take them down to the beach and go boogie boarding. Jon loved it! Monica was curled up in towel on the beach :)

Treatment today was fun, got to meet some great people. We shared stories, how we discovered we had cancer, trips we have taken and where we want to go. What was similar in all of our situations is how we now look at our lives - our dreams, goals and values have all changed. As well as the chemo brain we all have. We can't spell anymore, we forget things (especially mid sentence), and how we walk around in constant fogs. The good thing is that it won't last forever, hopefully, and that my mind will be getting sharper as treatment concludes. My counts went from 14 to 3 in one week, so I am going to stay with 4 shots again this time. Thanks to Brent for being good at shot giving!

So far today, I have just been tired, but not able to sleep. I have been able to eat a little; yogurt, crackers, bread...nothing huge. I have the bad metallic taste in my mouth this time (it tastes like I am sucking on a quarter or something). I keep eating jolly ranchers, but it's not helping.

I will keep you posted as the weekend progresses....

Reassuring News

I just got a notice in the mail indicating my head scan results are normal!! Even though this doesn't take away the daily headaches, at least I know nothing crazy is going on up there. Good News!
My body is just under more stress then I can fully understand and it is showing up in the form of headaches. Maybe Dr. Chen can recommend some other things I can do about it in my appointment tomorrow?? Either way, I am very happy about the results.

Weekend Festivities

I just had an excellent weekend. Lara flew it on Friday and left today.....we did a lot of laying around, laughing and short trips out and about. What was even better was that I was feeling good and had some energy! She brought some crazy wigs we played around it, see attached photo.

On Saturday, I took it easy. Brent and Lara went down to the ocean and did a little boogie boarding and ocean swimming. Lara signed up to do the Playa Del Run race on Sunday morning (1000 ocean swim and 5K run), we wanted to make sure she was comfortable in the powerful Huntington Beach ocean before she raced. Plus she had only been in the ocean 3 other times!

Sunday morning, we woke up nice and early to get to the race. Lara did the race with a bunch of my friends; Erin, Bobby, Tyler, Ryan and Shawn. They all did fantastic...other then Shawn getting stung by a stingray! Shawn was a rock star and still managed to finish the swim even though she was bleeding. Lara got together with a friend during the day, so I took the time to rest. The Celtics were playing again, needed to store up some energy :) We went over to our friends' house, Ryan and Shawn to watch the game. We did a little grilling. It was great to be able to get out of the house in small doses. The only interesting thing that happened was a random rash on my neck (at my first scar) about half way through the game - maybe it's because the Celtics almost lost a 22 point lead!!!!!! Not sure why they like to raise my stress level like that? I took some Benadryl and it went down by the morning.

Today was low key as well. Worked throughout the day and then we went to see Sex and the City during lunch. Big fan, great movie!

Looking Ahead:
I will hopefully have my head scan results back soon, I definitely had 1 or 2 headaches a day this weekend. I keep trying to figure out what I am doing pre each one and haven't been able to find a cause. I have my blood test again on Wednesday - hoping my counts didn't drop. I really paid attention to my energy levels this weekend. I am also meeting with my oncologist as well - have a lot of follow up questions for him, dad is coming with me. Thursday night, Jonny and Monica arrive to be with me for my third Chemo treatment.....

Update

That past few days hasn't been very exciting. So I guess that's a good thing. Been laying low and trying to get a lot of work done. I had my blood test on Wednesday and my counts were at 3, which is still a little low (even with 4 days of shots)...so the key is keeping my count at 3 between this week and next. If it drops too low, I could get sick and possibly not be able to get my next round of chemo - that's not an option! This weekend I will be careful who I am around and how much I do.

Today, I went into the hospital and got a CT scan of my head. I really wanted to get one done to help me to understand why I have been getting such major migraines. My primary care, Dr. Yu felt it was a good idea too. I am sure it is nothing and my body has been under a lot of stress, but with these results I can keep my mind from wondering if something else is going on. I won't have the results until the middle of next week. So, to be continued....

Lara is coming to visit this weekend and she flies in tonight. It will be great to see her. We don't have anything specifically planned, but looking forward to spending some quality time with a good friend!

Anticipation

Here I am....This is Matt and I right after we cut it. No glam and still smiling :)

Hair...

Just in case you haven't figured it out yet, the hair is gone. Alex and Matt were both with me last night. There were definitely a lot of tears and no one wanted to do the first cut. I put my hair in a ponytail and Alex cut it off. It was followed by Matt and the buzzers. We thought about doing some funny hairdos, but wasn't something we were enjoying doing...we tried to do it as fast as possible. We decided to leave a little peach fuzz on top to help keep my head warm. I do have a normal shaped head, no hidden moles or anything -

I am having a hard time looking in the mirror, so I am sure everyone around me will be more used to me with no hair then myself without hair. It will just take some time, and I am glad I didn't wait to take it off.

I was about to walk out the door with Alex this afternoon and she said, wearing something on your head just brings more attention, so I took it off. I definitely got some looks, but I really didn't care. I will play around with different things and my aunt Phyllis keeps sending me a large array of spectacular hand made hats, it's been awesome!

Hardest Day Yet....

All day yesterday, I was pulling hair off my shirt, off my blanket - I always shed...but this was different. I knew deep down inside what was happening, but I was doing my best to stay positive and to not let the negative idea come into my head. When I woke up this morning and my pillow was covered in hair....reality set it.

I think the hardest part is that I feel okay. I have hard days/times, yes...but I don't feel or look sick. I am tired and feel like I managed myself very well in this last treatment. I kept myself very hydrated, even drank a water bottle during chemo, paid attention to what I was feeling, took my migraine meds, anti-neaseau meds, Benadryl for the itchy palms....basically I was one step ahead of everything and never allowed anything to get out of hand. I ate real meals yesterday (especailyl because Matt and Dad kept putting it in front of me) I was definitely in a haze, but felt 'good' considering. With losing my hair, other people will also know I am sick. I hate that look - Awe, she's sick, or she has cancer. I know people tried to prepare me for this, but there is no way you can be prepared for something like this and few people truely understand what I mean.

Matt and Alex are on their way up from San Diego and Dad is here, he's been a great help. They will be here with me when I make the decision about my hair. Do I hold onto the hair as long as possible, slowly watching it all go or be in control of when it goes?
If you know me at all, you know the answer to that question.........