2nd Chemo Round

Dad was here about 7:45 this morning and we headed over to the oncologist. Dad was able to sit with me for the first 3 hours or so, before he had to give up his chair (another patient came in). It was good to at least have someone to talk to!

I was home about noon, as expected, and it took about an hour or so for the headaches to start. Even though they changed the anti-nausea meds, I am still having the same side effects. I had my Primary Care Doc prescribe me some real migraine drugs, so I took that and the headache is really light now, but not gone. I have a little appetite today as well...munched on yogurt, apple sauce and shredded wheat - yum! Ha, at least I can actually get food in me. When I weighed in this morning, I didn't drop, which is a very good thing. Although, my counts are really low - so it looks like I will be getting my white blood cell shots for the next 4 days, ouch. Other then that...Both Dad and I managed to get in a cat nap, so all and all, hanging in there. Just really weak, sore and tired.

For tonight, it's all about basketball! The Celtics are playing in game 6 tonight...if they win this, they are in the finals. I love Boston sports! Hopefully I am able to stay awake to actually watch it ;0

Tomorrow = 2nd Treatment

The last few days I have been feeling great. I have had some energy and was actually able to do some 'normal' things. Brent and I went shopping, went for a walk on the beach, and went into work (only a couple of hours, twice). It just felt good to be out of the chemo haze.

Brent flew to Colorado today, so it will be strange not having him around. It's his sister, Nikki's, birthday tomorrow and his grandmother and cousins are all getting together in Boulder, CO. It will be a nice break for him, but I will definitely miss him!

Tomorrow morning, dad and I will head into my second chemo treatment. We will be there a little after 8 am and I would expect to be back home about noon. I was prescribed an actual migraine medicine as well, so hopefully that will help through this next cycle. I will keep you posted with how it all goes....

Long Night

Some nights seem endless and last night was one of them. I went to sleep with a migraine. I was able to get it to go down for a little bit, enough to sleep for about 4 hours before it woke me up and kept me up the rest of the morning. What I find is that as I lay awake, I am able to really take a look at my life and where I am.....this is what I realized.

I realized how lucky I am. I know everyone keeps telling me "I'm so sorry" but really what are they sorry for. I have a very curable Cancer and something that is just slowing me down for the next few months. This isn't something that I can't win. I am not going to lie, I wish I didn't have this, but I do...now it's time to figure out how to live my daily life with it. It's just a new challenge. Those of you who know me well know I thrive off challenges. Just because I have Cancer doesn't mean the world stops, so really, why should I? I realize how much worse some Cancer patients have it and I am not clinging for life. I am living with Cancer and I am thankful for what I have.

The support of my friends, family, co-workers, friends of friends and people I have never even met remind me every day how thankful I am to have such great people in my life. Every step of my life I have come in contact with some amazing people and I have never been one to close any doors. Friends I haven't talked to in years called and we just picked up where we left off. It is amazing how many people are putting their priorities on hold to help me. I have been blown away! So for that, I thank you. I just hope you all know how much the support means to me.

Memorial Day Weekend

I must say, this weekend was very uneventful. (I am definitely not complaining)
On Saturday -
My cousins were in town; Adam and girlfriend Stef, Graham and his finance' McKenzie and my sister in law Alex. It was so good to see them! My Aunt and Uncle, Patty and George, sent me over a box of goodies (cookies and whoopie pies) and there are some classic shots of the gang enjoying them!
Sunday & Monday -
Great days of no needing to wake up or be anywhere. Brent and I just hung out. We did (okay, mostly Brent) did some cleaning, car care and laundry and a whole lot of guitar playing...that would be him playing and me just enjoying).

In terms of how I am feeling, I am hanging in there. My hair is still here...I will keep you posted. My appetite is back to normal, my stomach is still trying to keep up. I feel like a rock star for short periods of time and I want to take on the world. It catches up fast usually resulting in me laying on the couch for a while. We went out to the store and can make it about 15-20 minutes before I need to sit down. So I think in some ways the reality of how much this is affecting my body sets in. It still won't stop me though.

This up coming week is going to be straight forward. I am hoping to feel better and better every day and maybe get into the office a little. I have my weekly blood test on Wednesday and I have my second round of chemo on Friday - so I want to enjoy the little bit of energy I have right now. If the weather is good this week, I may try to swim - just as long as it's a warm night.

PFT

I feel like all I have been doing this week is taking tests. I had my PFT today (Pulmonary Function Test - Lungs). I had a little goof up with cars and keys this morning, so I was in a little bind with how I was going to get to my test. Good thing all my friends at TYR were willing to help me out...my friend Laura came by and picked me up. She got to sit and watch the test, I was trying so hard not to look at her and start laughing with my nose plug on and I was breathing into this half snorkel thing.

The great thing is this one I was off the charts on the PFT! I was over 100% on everything, at one point 150%. The goal is to still be at the same place post-chemotherapy! (That is why I am taking all of these tests.)

I also received the results from my blood test I took yesterday and all my counts are good. This means I don't have to give myself (or Brent giving me) shots to boost my white counts...it also means I can be around people. If my counts were low, I would be a lot more susceptible to getting sick as well as more weak then I am. I am not weak because my red counts are low, just because my body is using my energy to fight the cancer.

Plus I am feeling stronger and able to eat more 'normal'. Another day of good news! Let's keep these days coming......

Good News

Even though Dr. Chen nor Jennifer ever called me, after having my Bone Marrow results for a few days....the results are CLEAR! I am still in stage 2, no signs of non-Hodgkin's in my blood or bone marrow! If I could take a drink right now, I think I would - so, have one in my honor!!!

I also got my handicap placard today - thanks to Dad, I didn't mail it in, or go stand in line at the DMV....I went to AAA and was in and out within 10 minutes!

Nothing but good things today.

Cardio Echo & No Hitters!

Everyone keeps telling me about Jon Lester's no hitter last night (on Graham's birthday). If you don't know who is he, he plays for the BOSTON RED SOX (best team ever and by the way - Yankees S^*K!) and he's a Hodgkin's Lymphoma survivor.

He is today's and everyday inspiration! Check him out! http://www.boston.com/sports/touching_all_the_bases

Now, back to business: Today was the cardio echo, Dr. Chen ordered this to establish a baseline of where my heart is functioning. One of the chemo drugs effects the muscle of the heart, so they just wanted to make sure it was strong before it all really starts.
I arrived at the hospital a little before 10 AM this morning. I guess the patient in front of me was late, so I wasn't seen until 11, even though my appointment was at 10:15. I am not one who enjoys being late, nor do I like the idea of being held up for someone else who is careless. But I got over it fast when I learned it was a little 2 year old girl who was petrified of the entire experience. I guess waiting wasn't so bad in comparison.

The technician was very nice, but let me just tell you - when you get sick with something like Cancer, lots of things get thrown out the door. Good thing I was a swimmer most all my life and I am not that shy, because my lord at least 4 people came into the room during the echo and I am half naked on the table! Lovely. Regardless, it was really cool to see your heart up there on the screen - I kept asking questions, but I had way too many and just stopped asking. I will have all the results in a week.

Tomorrow I have my weekly blood draw. I will also pick up my paper work for my handicap pass. I am not sure how long that will take to come in (but I would advise the planning ahead factor on this one). When I stop in the oncologist office, I am also going to ask about my bone marrow results. I am hoping they might be able to give me some answers - especially if I am already there. I will keep you posted.

Other then that, I am just really tired. I am still having a really hard time sleeping. My friend Sean gave me a book that is helping to center me a little and it's helping me to slow my mind down...so hopefully I can continue to apply that over the next few months.

The Weekend....

I woke up this morning and turned on the TV. I sat and watched the marathon Olympic Trials (women) in Boston. All the hair on my arm stood up and I was so excited for these unknowns! All I have in the back of my mind is watching the TYR athletes make the team in a short few months. If I can sit and tear up on these people, I can't imagine the emotion with people I do know. Taking every day as it is will make July easier. The more I can learn about how my body handles this will allow me to travel to trials...that's what I want. Then a true vacation, ha!

This weekend is what I would call uneventful. Guess that's a good thing, right? I am having some stomach issues, but they come and go during the day....it will pass. Regardless, I was never hit with the nausea that I had been worried about. I have been sore from the shots (boosting my white blood counts) - feels like I did some massive squats and used my back a little too much. Even though I was just laying here on the couch, it did feel like I did something. :)

My goal this weekend was to sleep, relax, and to get to know my body a little bit more. How is it handling the treatment - listen to it. Eat when it told me to eat, not when everyone else was telling me to. It's not that I am not eating, just not a lot. The eating comes in spurts and I take advantage when the hunger comes - this morning was an egg and bacon. Odd, but tasted good.

And of course - thank you for the constant support Bethany (she is in the photo attached). She also donated all her hair to locks of love (www.locksoflove.org/). AWESOME!

It's Thursday & Itchy Palms!

Yesterday afternoon, mom and I went in to the Oncologist to get a small tutorial on how to self administer my Neupogen shots. These are the shots to help boost my white blood counts. Let's just say, I couldn't do it. Could you? Seriously, could you stick yourself in the stomach with a needle without flinching? I know I can't, so mom gave it to me yesterday and we will teach Brent today...because I will be taking the shots the two days after each chemo session and possible the week after too. So I know myself well enough to know I don't want to have to give myself shots, so if someone is around, I would like them to help.

The side effects to this drug is that my bones will ache, as well as my head. So I ended up crawling into bed about 8:30 last night, as soon as my head started to hurt. I really didn't want to deal with another possible migraine. What I couldn't stop was the jumpiness of the steroids. (It's hard to describe, but I will try) When I close my eyes, everything is flashing and almost in fast forward. As tired as my body is, I can't slow the mind. I took a relaxer and was finally able to sleep a little.

The other fun side effect, after reading all over the Internet (I wanted to make sure I am 'normal') is ridiculously itchy palms and wrists. That is a side effect from the chemo. So the palms kept waking me up....not much I can do to get the itch to stop, I just need to make sure I keep putting on moisturizer so I don't peel....fun, right?

I woke up this morning, itchy palms and all and then fell back to sleep for a little while - finally feel like I did get some good sleep. The positive is no signs of nausea so far (KNOCK ON WOOD)! I have been taking the anti-nausea pills, because I wouldn't say my stomach is strong, but able to eat a little bit. One hour at a time....

Rough Start....

This is more of a continuation of yesterday's events...
It all started at about 2 pm yesterday. Not only did I realize this might be a little harder then I previously anticipated, but I didn't have control over my body any more. It's hard to think, an athlete for more then 20 years, I learned how my body works, how it feels, what I need to eat to perform at my best, my ideal weight....the only thing I had control over yesterday was my mind....my body was doing things I had never experienced.

I had the slight signs of a migraine approaching. We tried taking a few Tylenol - those didn't touch it. I kept texting a friend of mine, Brian King (NH coach) to pick his brain. He kept saying the chemo is dehydrating me, so drink more. The problem was, the more I drank, the more nauseous I felt - pick your poison, right? At about 3:30 pm, I tried sleeping it off - ended up laying here for about 2 hours, it the dark, in silence and it kept getting stronger. This went on for hours. I tried a little food (two bites of yogurt) a few meds, ice...nothing. It was about 8 pm, full force migraine was definitely here...on a scale of 1 -10, it was a 10. I couldn't move my eyes, no light. It was absolutely horrible. I had tried taking Excedrin Migraine (not the best option, but was willing to do anything)...I also tired a vicodin, nothing touched this thing. Brent and Mom kept trying ice packs on my head....I was a sight to see. We toyed with the idea of going to the ER, but really, what could they do. This is something I had to wait out. The meds causing the migraine were in my system and I just had to get them out, in time. Mom and Brent cornered me at about 8:30 pm and force fed me. I was laying on the futon and mom had a yogurt, Brent crackers - managed to get down a bite of yogurt and a cracker. They weren't happy that I didn't want to eat....all the meds in my stomach wasn't good and all I really had was toast at 11 am. Food just made me feel sick.

Everything blew up, literally, at about 10 pm. I lost everything in my stomach (sorry if this is making you sick MZ!) The crazy part was that I felt so much better. My stomach wasn't jumping anymore, it had calmed down. My migraine started to crack. I waited about 30 minutes and was able to get down a few more crackers, 4 saltines, yum!

During this escapade, mom did some research, the anti-nausea medication I took, pre-chemo, is a medication that can cause migraines. If someone, me, is susceptible to migranes, you will most likely get one...so guess what - I am changing my drugs!

I layed awake more of the night, they told me that was going to happen, because of the steroids. I listening to my ipod for a while and just tried to relax. I think I fell asleep about 2 am.

Today I am going in for a shot to help boost my white blood cell count - this is help my immune system strong in between rounds of chemo. (Yes, it has been approved, thanks Julie for the advice)! This shot can cost about $6,500 if it's not pre-approved, ouch! The side effect to this shot is joint pain. My bone marrow will be over producing, so all my large bones will ache.

As a complete aside. Most of you that know me well know I have always been a huge fan of Lance Armstrong. I have always admired his work ethic and mental strength in cycling as well has what he stands for with LAF. When I finished my swimming career at UT, I had one mission...meet Lance. Not in a crazy stalker way, but just wanted to shake his hand. I applied for an internship at LAF in the fall of 2001 (my final semester). I got the internship and was asked where I wanted to sit in the office....LAF was in a Victorian House at the time (off Bee Caves) and they had just moved it. I could sit on the first floor and look out the windows, or 3rd floor outside Lance's office, DUH! I set up shop on the 3rd floor. My main role was to help with the Kids C.A.R.E project (Cancer Awareness and Rider Education) for the little guys. I was able to go around to a few schools, was a great program. One day, I was sitting at my desk and heard 'thump, thump, thump' Lance comes flying up the stairs...he walked straight over to me and introduced himself. He commented on being put up on the 3rd floor, that just coming to the office and climbing the stairs is a workout....All I was thinking, was wow, you are so normal. This was his first visit to the new office. He thanked me for setting up his office - don't worry, I didn't take the credit, I had no part of that. His office did look cool. But we were able to joke around and I had to give him directions to his own bathroom. I think that just helped me to admire him more. He respected us, he knew we were there for the right reasons and never treated us any different.

I emailed LAF this past week about what was going on. I've been a supporter for a long time of LAF and now I guess I am now a client. I still had friends associated with the company (thank you Elli) and they got back in touch with me ASAP. It's such a great organization, feel free to check them out at: (http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660611/k.BCED/Home.htm)

If this blog does get to Lance - "Thank you for doing what you do and hopefully you know where all the bathrooms are in your new office!" :)

1st Day of Chemo

I know a lot of people are thinking about me, thank you! I wanted to be sure to update this as fast as I could...just walked in the door.

This morning was nice and easy, had a great nurse Nja help us. She just had a baby boy 3 months ago, so mom and she were talking up a storm. Helped time pass.
They drew my blood and gave me a cosmopolitan (sex and the city) bag of anti-nausea medications. She followed with a test round of the Bleomycin drug, wanted to make sure I didn't get sick or allergic reactions before starting treatment. Once I was free and clear of that they started me on that bag. I had three other drugs today; Vinblastine, Adriamycin, and Dacarbazine.
The only issues I had today was with my port, I had to sit on my side and keep my right shoulder up - the machine kept beeping at me and giving me away when I moved. Could have been worse, right ;)

Other then feeling tired, I feel fine. They said Thursday will be most likely be the day I have any side effects to any of this...that is about the time the anti-nausea wears off and the steroids.

I will keep you posted. All I can say is that I am ready that this finally started. Thanks for all the messages!

Mother's Day Weekend

This picture best describes the weekend festivities....Thank you Alex for putting this together for me.

It was a lot of relaxing time this weekend. Sitting around outside, laying in the hammock, and a few games of croquet & bocce. Alex's parents were visiting too - it was great seeing them. We had a gourmet breakfast this morning, should hold me over for a few days!!

Not too much is new on the health front. My scars are starting to heal up well, but still there. In some ways, it's just waiting for the "D" day and I can't wait to get Tuesday started...or as Alex says, "C" Day(Chemo Day). The sooner treatment starts the sooner I can really beat this thing. I just tried to eat a lot and get rest. I tried taking some small walks, but was getting winded (it was a little depressing).

My brother, Matt, bought me a few things to sport over the next few months....a new F&*! Cancer Shirt and hat :) I figured it was appropriate in a situation like this, don't you think?

So all and all, great weekend - except for my mom continuing to cheat at croquet!! As she said "I have to keep the family tradition alive!"

It's Thursday -

Yesterday was a lot to swallow. Between being sore, knowing what was happening, finding cancerous tumors in my chest....it was all a bit overwhelming.

After I got home, I had some time to take it all in. Brent, mom and I had some long talks about the treatments; my fears, what is going on, what do I want etc. The big question that I couldn't get past is Why do I have to wait until Tuesday to start treatment? I picked up the phone and called Dr. Chen's assistant, Jennifer. I left her a message last night asking her to call me this morning.

She called me back today and I had a little closure to the situation. Every day, my oncologist takes in new patients (sad, but true). The nurses can only handle 2-3 'new' patients per day. The first treatment is the hardest, between the anxiety and unknown, there is a huge informational session going on. Because I am 'new', I can not pick my day, I have to go the next available day where I can get the attention I need. So it finally made sense. I can be a lot more flexible with my treatment days once I pass the first treatment - the first one is the hardest.

Couldn't they have said that yesterday??

Other then that, I feel okay. Still a little sore from the Bone biopsy, but nothing I can't handle....

Finally, have some real answers.....

(This is Allison, Jon and Monica's niece/godchild...so cute!)

So imagine the worst pain in you life. Half way up a huge climb on your bike, or the last five yards of the toughest test set - when your muscles are screaming and all you want to do is stop......

That's what I braced myself for this morning, in the bone marrow biopsy. The sad thing, it really wasn't that bad. They took a blood test, they got to use my port. The nurses had a very hard time getting it to produce blood, I guess they weren't using a long enough needle, because I am still pretty swollen. It hardly hurt, with them using the port, and don't have any more added bruises to my arm :)

After the blood test, I was taken to a exam room. Dr. Chen was very good about telling me what was going on during the biopsy, because I can't see what going on.....I was on my side, facing the wall. He cleaned up my back and poked me to numb up the area - that was the most painful. It was a poke (pinch) and then a burn. He did that a few times until the area was numb. I couldn't even feel him stick me for the biopsy. I did feel when he took out the marrow, it was a lot of pressure - not to the point I thought I would scream, more just holding my breath. It was over in a few minutes. He actually had to take two bone biopsies, because I guess I have strong bones - Go figure!! I am just sore, kinda feels like I feel down some stairs and bruised my spine (best I could describe).

I asked to see the needle - I want to know the ins and outs of what is going on, so why not, right? It was a medal rod, about 4 inches long, and hallow. It is about the width of the tip of a pencil. It sticks right into your bone, thus producing the sample....

Those results won't be available for a few weeks. Based on all my previous blood tests, none of my counts have dropped so there is no indication that the cancer is in my blood, but this is to double check. IF for some reason it turns up in the marrow, that would just move me to stage 4. It wouldn't change my treatment plan, just make it longer.

The results were in from my PET/CT scans I took on Monday. They found two small tumors in my chest. We all have cancer cells, some will multiply (producing cancer) others do nothing. When they look at the scan, the cancer cells illuminate. A normal cell will illuminate at a 2, mine were at 14. What that means are mine are very active. The positive is that mine are still above the abdomen - so I am at stage 2.

The plan is that I will start Chemo on Tuesday, my appointment is at 7:30am. I will have 3 - 4 months of chemo followed by daily rounds of radiation for a few weeks after chemo. I will be getting bi-monthly body scans to make sure the tumors are reacting to the chemo. Mom and I tired to get us in for Chemo Friday, but the earliest we could get is Tuesday. I am going to call anyway to see if someone cancels to call me - I will be there in a flash. Why wait.....

Sorry this took me so long.....

Okay, where to start. I had a great weekend with my family in HB. To be honest, it was really hard to be around large crowds, because my chest is so sore from the port - the crowds are all about pushing through and bumping. It was great seeing them, but it definitely wore me out, was more activity in those two days then I had all week, but wouldn't have traded it for the world! I added a few photos of us out and about for your enjoyment....

Okay, back to the facts. Had the PET scan first this morning, got there a little before 7 am. Got to sit in some nice recliners, he put on a space heater and got ready for the tests. I think the guy felt bad about all my veins; he couldn't decide where to poke me, because I was all bruised in the most popular places. So he was careful and tried to just poke me once for today. He put some sugar stuff in me and I had to relax for about 45 minutes before the scan. Right before the scan I had to drink a LARGE cup of contrast - I wouldn't say it tasted bad, but by no means did it taste good. The gag reflexes didn't kick in, so that was a good thing. I was able to listen to my ipod during the scan, which was great! The scan was about an hour long and they tied me on the board. I just had to be still.....pretty much painless.

After the PET scan, I walked downstairs for the CT scan. They injected me with iodine and this scan was about 15 minutes, nice and short.

From there, went home, tried to get some work done, but was definitely out of it. I ended up passing out for a little over an hour and feel great now. The results from scan will not be ready until tomorrow. This will indicate what stage I am in and thus telling us what the treatment plan will be. Right now, I am waiting on the scan results; I have the bone marrow test on Wednesday. So much more to come in the next day or so……………

Another update...

I got a call from my doctors office and the scans have already been approved by my insurance company. They left a message that I might not be able to get me in for a week - so I took a deep breath and called. Before she could say anything I said "I am going to be perfectly honest with you, I was just diagnosed with Hodgkin's and my treatments can not start until I have this scan....What's the earliest I can get in?" She said, "Hold on a second, let me see what I can do"....got to listen to some great holding music and she came back "How about Monday morning at 7 AM?" All I was thinking - Crap, it worked!
It will take a few hours for each scan on Monday,, all very good news. Looking like I can MAYBE get my first treatment next week.

Thanks for all the positive thoughts, it's working!

A Little Direction

Here are the two scars (left is the new port, the right is healing from the mass)was yelled at for not having enough photos - Zimmer!

Woke up at 2 am with one of the worst migraine I have ever had.....I do respond to Excedrin Migraine, but because I was going into surgery, I couldn't take it. (Thins your blood and makes you bleed more). So Tylenol was all I could take. Brent sat with me trying to help with pressure points - finally went away after a few hours. Ugh!

Went in to meet the Oncologist, Dr. Chen and his P.A. Jennifer. I am in the process of scheduling at PET/CT Scan, Cardio Eco and getting my bone marrow tested. We have to determine where the cancer has gone before we have an answer on what stage and how long treatment will be. The Bone Marrow test is to make sure it's not in my the rest of my body. He was very nice and very honest about what may happen and will most likely be losing my hair. Brent said he'd shave his head with me......but until we have the results from the scans, can't really come up with a plan. I am scheduled for the Bone Marrow test next Wednesday.

I left the Oncologist and had three messages from the surgeon...he wants me at the hospital, because he can take me into surgery right away. We were there within 5 minutes. I had blood work taken and opted not to be put to sleep for this surgery - just to get loopy and numbing where they were going to put the port in. But basically, I am awake during the procedure. The bennefit is that I don't feel all doped up after. I didn't think I was feeling much until I was laying on the operating table and I was joking with the anesthesiologist that the ceiling was moving (it was like all the lights were on tracks and moving around). I think it was working......
When I came out of surgery, I had to sit around for a little bit, they took another 3vials of blood (can't wait for the port to be up and running, my arms are looking pretty sketchy right now) and they took another chest x-ray. They wanted to make sure the port was placed correctly. The Surgeon, Dr. Berman said he had a lot of trouble putting it in because of my massive chest muscles from swimming, ha.

All was good, so I was ready to go home.

The next step is to wait for pre-approval (insurance) for the PET/CT Scan. That will be the final test before everything can get started. The other tests will just be informational and can happen even if chemo has started....so cross your fingers that approval happens today or Monday and can get in early next week for the scan.

Jon and Monica are flying here tonight. Matt and Alex are driving up. Mom is here and Dad will drive over tomorrow. It will be a great gathering with us all this weekend - Great to have everyone here, too bad it's under these circumstances.

it's Thursday

Was able to get another good night sleep, that's two in a row - on a roll now!

I went in for my 2nd chest x-ray this morning , easy and painless. Other then that, just working from home and staying pretty low key. Have to load up on some food, because I will need to fast for the surgery tomorrow at noon. During my last surgery, I just layed there with my stomach rumbling and that was a 8 am, not sure how I will do waiting until noon :) Glad I am concerned about eating.....

Tomorrow is the meeting with Dr. Chen and then the surgery. Brent was able to get the day off so will have lots of support.

That's all for now....