So I am sitting in the "chemo salon" (just heard a woman call it that so I am stealing it) and I decided this would be a good time to update the blog. This has been an eventful week. I have been feeling fantastic since about Wednesday of last week. So it has been approximately 10 days of good, maybe the pattern will be...have chemo feel like poop for 10 days and then feel fantastic for 10 days. We will see after this round.
My friend Susan, who I have known since college came in town to visit, from Jacksonville, FL on Wednesday. We have had a couple of great days. She is getting to enjoy the super exciting chemo salon today too, she hasn't gotten to see a lot of Austin but we have a view of the skyline from the salon - see it really is a pretty fancy place. I am so thankful to her for coming. I continue to be humbled and amazed at the amount of love and support I have. I am so very blessed.
Skyline view - look way in the distance it is there.
Me in my salon chair
Last Friday which was day 14 after my first round of chemo I went in to see my super fabulous hairstylist Michael Nix-Tipton. Michael has done my hair for about 9 years and he has always said I would experiment with anything when it came to color - he would die my hair purple and I could handle it - but when we started talking about cutting length that's when I freak out a bit. So everyone was wondering how I was going to handle this appointment - me included. Everyone says your hair starts falling out around day 13-14 so Michael and I decided we would cut it short so 1) It would be a good transition to ease me into being bald and 2) it would give me a cute new do to look forward to when my hair starts growing back.
Now me and short hair do not have a good history. When I was a kid my mom always gave me the "Dorothy Hamill Cut" for those of you who are not familiar, here is a photo of her (I did not put the heart around it but I thought this picture was ironic since I have not an ounce of love for this do)
I have never had short hair since. I was traumatized by the Dorothy Hammill cut, deep seeded emotional trauma. The kind a therapist would have field day with. I can still hear Mom's voice when she told the hairstylist "Give her the Dorothy Hammill Cut". UGH!
When I was in high school, My mom had a wall of photos of me at all different ages from birth to present and my friends would come over and look at all the photos and when they got to one specific one they would always say, "Who is that little boy?" - ummmm that was me when mom forgot it was picture day at school. I had on a white t-shirt and brown corduroy pants, holding a bible, with the Dorothy Hammill Cut. SCARRED FOR LIFE!
So back to Day 14, my hair had been look especially fantastic for the past week of course, but I had gotten myself psyched up for "the appointment". I had a few tears on the way there but for the most part I was ready. When I arrived the receptionist poured me a glass of wine - that on top of the two margaritas I had a lunch were providing the perfect amount of liquid courage to get into Michael's chair.
He cut a fabulous do. It really is cute, not anything I would ever choose for myself but I like it better than I could ever have imagined. It is the easiest thing ever. My normal one hour, getting ready routine, was cut down to about 15 minutes. Very nice! Michael hates this picture of him but I had to put him in here so you can see him, bless his heart he was staring directly into the sun. He is such a sweetheart, I adore him :)
So now here we are at Day 21 and my 2nd round of chemo and my cute new haircut is slowly but surely falling out - in CLUMPS. What a mess. Yesterday we were walking down the street between two downtown buildings when a big wind came up and created a wind tunnel. I just knew by the time we reached the end of the block I was going to be bald. Wouldn't that have been a sight to the people driving by? I have decided I am glad it hung on it this long (a whole week!) but I am ready to move on to one more milestone and shave it off. So today when I leave the "chemo salon" I will head for the hair salon and I will have Michael shave it all off - just one more step and I think I am ready, I hope :) Then we are heading hat shopping, wigs, hats, scarfs, who knows what I will be wearing next time you see me.
I think I have mentioned before that I get real discombobulated (is that a real word? I think it is, yep just googled it, it is...meaning "to confuse or disconcert; upset; frustrate") when things go against my planned schedule or the way I thought things would happen. Well the past seven days have discombobulated the heck out of me. I have researched and talked to people who have gone through chemo and I thought I was going into this thing with a really good sense of what was going to happen. In my mind, and from what I had heard, you have a chemo treatment and somewhere within the next three to five days you feel like crap. Maybe differing degrees of crap, but overall crap and then it is over until your next treatment. Ummmmmm not the case for me. Once again defying the norm...Go Natalie.
So I got through Hellacious Weekend #1 after my treatment on Friday and then by Tuesday I was feeling good, thinking the storm had passed and I was good until the next treatment. I was told that I needed to get a shot the day after chemo to boost my bone marrow and increase my WBC's (White Blood Cells). That sounded easy enough. So on the Monday following chemo I went back in to get the Neulesta shot got the shot and really didn't think much more about it. They told me it may give me some back pain and/or joint pain but it normally is only bad in older people. So I didn't really worry. Tuesday and Wednesday went well, I was little more tired than normal but still feeling much better in comparison to the weekend so I was A-ok. Then starting Thursday night I was all of a sudden absolutely wiped out again and feeling really weird. Woke up Friday morning feeling really bad dehydrated and just "off", really unexplainable. I already had an appointment Friday morning to go in and get my blood tested to check my levels (I will do this every Friday because it is seven days after my treatment) so I was hoping they could shed some light on this. As I checked in at the desk the receptionist says, "How are you feeling?"
"Not so good, I responded.
"You had your first treatment last week right? What day is today?" she said.
"Seven" I said.
"Oh yeah seven is tough one." she said.
WHAT????? <Insert more discombobulation here> No one ever has mentioned Day Seven being tough, What the heck??? More surprises...great!
Are there more of these special number days I should be warned about???
When I go in to see the Nurse Practitioner she goes over my blood levels. A normal WBC count is somewhere between 4.8-10.4 I am at a 1.4, no wonder I have absolutely NO energy. She explains how the shot they gave me on Monday should increase this count and I should start feeling better, it normally takes five to ten days to kick in. I am only on day four so it should have me back to normal levels by Sunday.
So pretty much just wait it out...great.
I started to get to feeling a little better Friday afternoon and even made it out to happy hour. It's amazing how I can rally for a happy hour when "needed". It was great to go have drinks and feel somewhat normal for a couple hours. I met Robin, Robin, John, Shannon and Jessica at the W. The Departed was having their first show at the new ACL venue and all of them were going. I wish I could have made the show but the two hours of happy hour wore me out enough. I think my late night concert days are going to have to be reserved for the third weekend after chemo. Planning on testing that one out this weekend I will let you know how it goes.
That night I was lucky enough to get a visit from the joint and back pain that "usually is only bad in the older people". The back pain was so bad I thought it was probably similar to labor contractions. I couldn't even lay down in the bed, much less sleep it was a terrible night and an even worse weekend. All weekend I had sharp stabbing pains in my knees, my hips, and my back. I bet that is what arthritis feels like, so painful. I took ibuprofen, vicodin, nothing even touched the pain. I was bed ridden ALL weekend, way worse then the weekend before. But by Sunday evening it had passed, I lived through another storm, Thank you Lord.
So here we are at Wednesday and I have actually felt "normal" today and yesterday. I hope (fingers crossed) I am now past all the ailments until the next treatment Feb 25th. Let's all hope for 10 days of no more discombobulation :)
My next big hurdle is the hair loss. It is supposed to happen around day fourteen so that will be Friday. I have an appointment with Michael, my hairdresser, on Friday to cut the majority of it off so I can donate it. He is also going to play with it and give me some cute "short" do so I have something to look forward to when it starts growing back and I am thinking it may just be time to shave it after that. This part is going to be rough. I will keep you posted.
Well my first day of chemo could not have started any better, an inch of snow in Austin, Texas which pretty much paralyzes the entire city. I had spoken to the nurse at Texas Oncology the day before during that fabulous "chemo class" and she had assured if the weather got bad and they were not going to be open they would call at 6:30AM. Well around 8am Mom and I left my house and slowly headed up Mopac toward the office. At about 8:20 a nurse calls and says they do not have lab techs so they are rescheduling all appointments. I explained we were almost there and it makes no sense for us to turn around so we will just come and wait. We made it to the building with only one terrifying..."oh S*&T we are going to slide into this ditch" moment.
After we waited a little while they finally got us going. They accessed the port that I had had "installed", earlier in the week, without any incidence. I was relieved. I don't know what I why I was so scared of that part but I was. They started by giving me a steroid and then an anti-nausea medicine before they started any of the chemo drugs.
The Taxotere was administered VERY slowly to be sure I didn't have any allergic reactions. Thankfully I did not. The Taxotere took four hours total. They said next time it should go a little faster since they know now that I will not have a reaction. Adriamycin AKA "The Red Devil" was the next drug. It is called the Red Devil because it is bright red. It also make you pee red for a few hours after its administered. Something they DO warn you about - good to know! That little devil just took about 15 minutes which seemed like a couple of seconds compared to the Taxotere. The Cytoxan was the final drug and that one did not give me a headache like it could have and only lasted a little over an hour.
We were done and headed home by around 3:45 so it was a long day but I did not get sick and felt fine when we left to go home. That did not last very long. Around 7:30 or so the nausea set in and it really took me by surprise. Everyone had told me it would be two or three days before I felt the effects but lucky me, I got it same day - yipee! I think the anti-nausea medicine they gave me before the treatment started probably needs to be changed next time so that will not happen.
Over the course of the weekend I was able to get the nausea under control with the medicine they had given me, but I was EXHAUSTED. The word exhausted doesn't really adequately explain how tired I felt. It was unlike anything I have ever felt before. I slept most of the day Saturday, I was able to eat and actually got out to meet "The Robins" and Lucy for dinner on Saturday night. It seemed like after sleeping all day 5pm-8pm was a good time for me. I actually would feel like I could get out for a bit, even though everything took a huge effort. Even climbing the stairs was a chore. Sunday was pretty much the same I stayed in bed all day then got up long enough to go over and watch the first half of the Superbowl with Randy, Brooke and Baby Izzy. I stayed home Monday because I was pretty sure if I could make it through getting ready for work I would most certainly fall asleep at my desk or while driving to the office. But finally about 3:30 on Monday I got a "wave" of feeling great. It was just like the storm had passed. I almost felt euphoric after feeling so bad. It was really weird, I think if it wasn't so cold I could have gone for a run, I felt THAT good. I know strange but true.
So the first round is behind me - hooray, and I have an idea of what my "pattern" will be. The doctor said your symptoms will usually follow the same pattern so now I know what I am dealing with. Only five more hellacious weekends to go :)
Also, I cannot end this blog without thanking each and everyone of you who called and texted and prayed for me during this first treatment. I am constantly amazed by the outpouring of love and support, I am so very blessed. A VERY special thanks goes out to Annette who braved the blizzard and came and sat with me and Mom during chemo. It is a very long and day and not even a bit of which is exciting and Annette sat with us for most of the day after braving the elements to get there. That girl is good people :)
Well on the eve of my first day of chemo I had to attend Chemo Class, yes they call it a class. Now I don't know about you but the word "class" always makes my stomach turn. Was I supposed to study? Is there going to be a test? Do I have to pass or they don't give me the chemo. Geez I don't need this kind of pressure right now.
I think this is the absolute worst title they could give this thing. I mean shouldn't they make it sound like somewhere you wanted to go...Like "Chemo Pre-Party" everybody likes a good pre-party. And it sounds like that is just the beginning, it's party before the party. They already call your chemo drugs your chemo cocktail, so they really should keep up that "fun" lingo.
"Class" actually ended up being nothing like a class at all, except that I got to watch a movie at the end. I was the only one in the class, apparently they do not have an issue with overcrowding. I got to sit down with a financial counselor who gave me the "this is what insurance pays and this is what they don't pay" lesson which is always a fun one. Then I had a nurse give me a tour of the infusion room. It is a bright an cheery room with 32 recliners and about 20 tv's. They have a kitchen and lots of food and drinks available and they said lots of restaurants deliver. Obviously a lot of eating goes on during chemo. Those chemo cocktails must give you the munchies.
They said I would be there for five to six hours. My chemo cocktail is three different drugs and each is administered separately. The first one will be Taxotere and this one will take the longest. This one runs a large risk of allergic reactions, doesn't that sound fabulous. The way it works is they slowly give it to me and wait to see if I have an allergic reaction. If I do they stop and give me Benedryl or something to combat the reaction then they give it to me again. They said eventually my body will be able to take it but it may take a few trys....fun fun! So this drug could take two - three hours.
The next drug is Adriamycin it is a pretty quick one, it should only take about 15 mins. Then they end up with Cytoxan which could take an hour or may take two. It gives some people migraine headaches so they have to administer is really slow if this happens.
After they explain the process they ran down the list of about a million different side effects I could experience. None of these sounded fun, I will spare you the details of all of these.
So tomorrow is the big day. 8:45 is when I start so if you have a break in your day and have the chance send a little prayer my way, I could sure use it. I am really looking forward to getting the first one done so then there will only be five more :)
Today is the day, the official start of my life as a cancer patient. Since December 7th I have been in the planning phase, with the cat scan, pet scans, blood work, PEM scans and the multitude of doctors appointments. But that was just planning, as of today the battle begins and my life will never be the same. Yesterday was my last day as a "normal person", today I got the port installed, Friday the chemo starts, and in two weeks I lose my hair. From this day forward I will always be a cancer patient. I WILL BE a survivor at the end of this, but a cancer patient just the same, for the rest of my life. Even when the port is removed the scar will remain as a reminder of this battle. I wonder if there will ever be a day I don't think about it. I wonder if ten years from now I will have an entire day where there is no mention of cancer or there is nothing that sparks a memory of my cancer and right before I go to bed I get undressed and the scar is there to remind me. I wonder...will I hate the scar, will I love the scar, will it be like a battle scar and give me strength....I wonder.
I am a different person today than I was yesterday, February 1, 2011 it all changed, I have changed. The training and planning is over, it's time to fight. Just like a NASCAR race, the engines revving the gun fires and here we go......
