Merry Christmas

Hope everyone has/had a happy, healthy and safe holiday with the people they love!

Here is a picture of me with Brent's siblings as well as the birthday girl blowing out her 29th Birthday candles!
(I will post more pictures later)

The Trip East

Sorry, this is a long one, lots to report.
So Brent and I were packed and ready to fly back east on Wednesday. I met Brent after school for our flight out of LAX. We had a rental car, from insurance, so we figured we would drive the car into LAX and just return it. Mind you, Brent got out of school at 11:15am and we had a 12:50pm flight - not much room for error. The rental car drop off was off sight, oops. Didn't time that well. When we arrived at the airport to check our bags it was 11:50am and lines out the door. Not a good sign. We check the bags and make the flight to Vegas, phew. If you were watching the weather, then you noticed the snow in Vegas - so much that they closed the airport! Our flight realized that when we were flying over it. At this point we were low on fuel and the closed airport we could get to was in Ontario (California, not Canada). Ontario is about 40 min from LA. We are stuck and there is an option to bus back to LA or stay in a hotel and fly out Thursday. Brent and I opted to try again in the AM...

We proceed to stay in lines for a few hours only to get to the counter and hear, all flights to Providence are sold out for Thursday, you can't fly until Friday. Fantastic! The one plus is that dad leaves near the airport, so we were able to spend some time there AND we got our bags back.

I called the rental car company because we were going to be late. They tried to RAISE my rate by $400!! I was coming two days later and you wanted to what?!? Long story short, I talked to corporate and they worked with me, ugh!

Friday comes and Brent and I tried to fly standby. Providence is expected to get 13 inches of snow, great. We arrive at 7am only to find out all flights into providence are sold out - so we can leave Ontario but we'll be trapped at our connection location. So we decided to stay on our flight at 12:55pm.

Our connection was through Nashville. Brent fit right in carrying his guitar. We are looking to get into Providence when they announce over the intercom "we will be grounding flight 2028 to Providence, time is unknown, they won't let anyone land at this time. More to come". The rental car company closes at 12:30am, we had a small window for error, again, or would get stuck at the airport. Needless to say, they finally let us out and we landed at 12:15am which had me running to the rental car counter (not really, but a brisk walk)! I just love winter traveling in New England!!

We woke up this morning (after 5 hrs of sleep) and went straight to Boston University. There was a meet there and I had some teams I wanted to see. Some old team mates were there too, so good to see them all. We went from the meet straight to the Cape - its Grammie Dot's 83rd birthday today. My cousins, aunts, uncles etc were all there, again it's been too long since we've all been together!! Was a great day.

Tomorrow - Patriots Game and it will be a cold one for sure!

Diving right back into things......

My first trip to Atlanta went well, other then the horrible experiences I had at the Hilton Atlanta (don't ever stay there!!). I was at the meet for a day and a half, just enough to test my body. I was able to meet up with one of my college friends, Ashlee Fotinakes and her daughter Karlyn. Was great to see her and to catch up. It's amazing how much we have all grown up since our college lives. My body handled the trip well. I was able to come back on Friday to the OC for a few days to rest, do some laundry and spend some time with Brent.

On Tuesday I flew to Austin. Going back to one of the greatest place and where most all of my greatest, closest friends live, it was extremely difficult to get it all in and I definitely failed. I did hit most all my favorite restaurants, but wasn't able to see everyone I wanted to. The meet took up most all of my time, so it left me with a few hours here and there to try to meet up with everyone. I am looking forward to trying to get back there in March - my body will be in a much better place. I was much more worn down by the end of this trip, my voice starting to crack a little. It was a welcomed trip back to the OC for sure. I got in a lot more then I thought I would, but definitely not enough as I wanted.

I flew back last night and felt it this morning. Just worn out. I didn't stay in the office all day today, came home and worked here. I am able to just sit and get work done when I do that. I will be in the office tomorrow before I fly to Boston. Not looking forward to the cold....but looking forward to some extended family time and seeing Brent's family!!

Overall, my body is responding well, but still miles away from where I want to be. One day at a time......

Here are a few pictures from a night at Hula Hut, enjoy.....

Port Aftermath

Here is a picture of the port aftermath. As you can see, it's bruised and stitched. I finally took the tape off that was covering the stitches. I can definitely move my arm again, so I am happy about that.

Other then the port, Brent and I decided to take a LONG walk on the beach. We ended up doing 7 miles!! Crazy, I know. I was definitely cramping and getting tight at the end. It felt great though.

The trip to Atlanta went well, got a little tired, but nothing I can't handle. I am headed to Austin in a few days, looking forward to heading back to my old stomping ground. I doubt i will be able to do everything I want to do there, but just being back will be a breath of fresh air.

Port Removal

Sorry it took a few days to get up a post. After the port came out, packed and got right on a plane to Atlanta...
Brent was able to get the morning off, so he could come with me. We arrived at the office a little before 8am. We opted to have it removed in the Dr office vs going into the OR (plus the co-pay was $10 instead of $200). We were brought back about 820. The area around the port got numbed up, that part wasn't fun. It's a stinging and burning feeling. He waited a min or two and cut away. The goal is to cut over the same scar, which wasn't more then a few inches long. As he cut, I could feel it. Not fun either! He told me I shouldn't feel anything, but I did, so not sure why...he continued on regardless. He had some trouble getting it out. A few of my friends talked about it getting stuck, so was kinda a strange feeling when that actually happened. He had to wiggle it a bit before it came loose, definitely had me sweating at this point (literally). When he pulled it out, wasn't what I expected; was white and plastic. Was like a lolly pop with a long stick. I was stitched up and on my way by 845.
I am a little sore, but it was 10 times worse getting put in. I can move my arm again now, so that's not too bad.

I am still in Atlanta, first prelims were this morning. There is some good races so far...I am hanging in there, getting tired, but I am also taking advantage of the down time!

Thanksgiving and upcoming plans

Hopefully everyone had a wonderful Thanksgiving. The weekend was pretty uneventful other then it taking more out of me then I thought. Brent and I slept close to twelve hours last night, just trying to recover.

There is a lot of things on my calendar the next few weeks, first and foremost...my car was involved in an accident, Brent was driving - no worries he is okay. We will know tomorrow if there is enough damage to call my car totalled. We are hoping NO! So keep your fingers crossed. I am getting my port out on Tuesday morning. Brent is going to take the morning off so he can come with me. I am not sure what to expect, but they aren't putting me under. Dr. Berman (the surgeon) seems to think it will be really easy, so just have to trust him. The procedure is at 8 am and at 1 I am getting on a plane for Atlanta. I will be there for a few days and then I will be heading back home to recover. I will then leave the following Tuesday for Austin, will be there for work...and of course will extend it a little longer for personal reasons :) I fly home Sunday and then leave on Wednesday for Massachusetts.

Hopefully you were able to keep up with it all. I am definitely nervous about how I will hold up through all this. (C.Webb, I know!) I will do my best to break away and rest when needed. I am coming back to rest between trips and will continue to be overly cautious around others...I am also excited to get back into the swing of things!

Here are a few pictures from Thanksgiving....

Photos from the last few weeks.....

Here are pictures from various things over the last few weeks; Adam & Stefanie's visit, Stacey & Casey's visit, Huntington Beach, Matt's homecoming and just plain living again......Enjoy!

Getting my port out?!?

I had my appointment with Dr. Berman this week. He was the initial doctor who diagnosed me who did the initial biopsy and who put in my port. He was basically the first doctor I had and who was very helpful in trying to get myself and my family through the shocks of the diagnosis. I hadn't been to the office since I left there in April (the day he told me I had Lymphoma)...so walking in there brought back a lot of emotions. As happy as I am to be clear, some days I am still in shock that this happened and know I will never be the same. I look at life differently now, that's for sure...

Ok, back to the subject of my post; the port. Dr. Chen agreed to let me get my port out, but I had a feeling Dr. Berman might have something to say about it. When I first got it in, he said I would have it in for at least a year. For those of you who don't know my port was used to administer all my chemo drugs. The drugs were very toxic and the little veins in your arms take a beating if they are used. Plus the poking hurts less. Some people can get blood draws etc, but my insurance didn't allow that. So, when I told Dr. Berman I wanted it out he asked if I was sure. He said if it comes back we would have to put it back in. He said I like my patients to have them in for at least a year. My response was "I'm going to think positive and I know it's not coming back!" He just looked at me and said okay. I think he knew arguing wasn't going to work.

He is going to avoid bringing me into major surgery and just do a local numbing and take it out in his office. So, no getting put under! My appointment is scheduled for the morning of Dec. 2nd. That is the morning I fly to Nationals in GA. It was either that or January and that wasn't going to work. I want it out now! He said flying won't be a problem and I'll pack light..it's a simple procedure.

So lots of good news, so much better then the post after post of horrible days.

I am currently down in San Diego visiting with Stacey and Casey who are here for a few days. I took these two days off from work to spend time with some very important people. Who knows what tomorrow will bring, so enjoy today.
(I will post some pics of the trip soon.)

Remission!!

Went and saw Dr. Chen today and the results on my PET scan showed NO activity! It's official, in remission!
It's a good day!

I also asked about getting my port out and he said, go ahead and schedule it -you don't need it anymore :)

I can't stop smiling....

PET Scan

Went in for my PET scan today. For some reason I didn't get a CT scan too - my last two PET scans I had both? I am going to see Dr. Chen on Friday...we will go over the results and ask about why I didn't get both.
Friday's mission is to remain Cancer free and to get a time line on my PORT removal. I won't lie, it's hard to feel like this chapter is closed when I still have this PORT sticking out of my chest and beautiful blue dots on my chest and neck. I know it could be worse, they are just reminders.

Today I booked some exciting trips. 1) to nationals in Atlanta and 2) juniors in Austin...can't wait to be back out there. Yes, CW, I will still take it one day at a time...

More to come on Friday...and the news will be followed by a margarita or wine, can't decide, ha.

Kept you waiting....

Sorry it was another long wait for an update. The flight to Chicago was uneventful, which I found very exciting. Although, when I first walked into the airport in Long Beach a lady turned and sneezed on me - fantastic, I know. I was really tired the day after I flew back, so I made sure I stayed home to work. I guess I am just trying to take everything one day at a time. My energy levels come and go....and Brent says I am a good "faker" (I can put on a good show around people and then crash when it's just he and I). I have noticed that there is less and less of those major crashes and I am becoming more and more sarcastic again. I know, I am sure you all missed that.

I had blood work on Friday and will be going in for my PET scan on Monday. This is to make sure all the treatment worked etc. Brent has the day off, so he will be taking me. I have scheduled to see Dr. Chen on Friday and I will talk about when I can get my port taken out.

As for everything else. My hair is growing back, not to sure what to do with it. It's getting sloppy, but I want to grow it out. It's definitely a catch 22! I have a few trips scheduled for work (nationals in GA and juniors in TX). I will take that as it comes. I will let you guys know how the scans go.....

Update

A wise person told me to make sure I take it easy and don't push myself too hard (CW). I am listening, I promise! Today when I woke up, I was feeling very drained, so I decided to work from home. I am taking it one day at a time, always.

I am scared about flying this week. I am concerned how my body will react and I am concerned more about the other people on the plane then myself. It's the coughing, sneezing, recirculated air etc. I had a long talk with my Grammie today and she is concerned too. She suggested I get a mask or have a handkerchief to cover my nose and mouth. I will explore some options before I leave on Sunday. I will definitely have disinfecting wipes and hand sterilizer etc. I am mentally ready to travel and won't really know how my body will react until I try, so I am going to try, but it does come with some risks. I know things will be great when I get there, it's just the process of getting there.

I am thankful that I can offer support to anyone who is entering treatments or has found out a family member has cancer. It's never hard to not have your questions answered and I had a very strong network of people willing to listen to my fears and sit with me while I cried. If I can do the same for anyone else, then that is the least I can do. I am not perfect and I still have fears, but I am thankful to everyone who stood by my side, because it is very easy to be forgotten.

I decided to start a life to-do list and would love some input. These are things that I thought a lot about over the last few months. You only live once and I am tired of waiting until I have time, because who knows what tomorrow will bring.....

1) Bike cross-country and raise money for cancer along the way. This is something my father, brother and I always talked about doing. It's time to stop talking and set a date!
2) Go on a true vacation. Never been. I have gone to some amazing places with my jobs and swimming career, but would love to go to a beach some where for a week...not visiting friends...nothing but Brent and I and we'd turn off all electronic devices!
3) Hike the grand canyon - who wouldn't want to do that?
4) Take a cruise to Alaska. It's beautiful up there!
5) Backpack through parts of the world. Haven't narrowed down where I want to go, Brent and I have some places in our minds, so might have to be a few trips.

So this is the beginning of my list, any other added suggestions?

Getting some shots -

Tomorrow morning I am getting a few shots: flu and pneumococcal. From what I have been told, the pneumococcal shot is very important to people with weaker immune systems. Having chemotherapy puts me in that category. I am bruising very easily, so I am just hoping that I don't end up with nice black & blue on my arm for the next few weeks.....but I guess it could be MUCH worse, right?!?

My energy levels have been hot and cold. What usually ends up happening is that I have a lot, do too much and then crash. It's important for me to really pay attention to my body. I definitely put on a front (as Brent says)...when I am around people, I will hide how I am really feeling, I will get quiet, but do my best to try to keep up with whatever is going on around me. When I get home, that's when I crash, when it's just he and I.

One of my first major tests will come this weekend. Brent and I are going to see Jason Mraz - can't wait! I love that guy!! It will be interesting on how my body handles something like that. My second test will come on Sunday, because I will be flying to Chicago for a staff meeting. I am flying direct, which is going to help a lot. Considering I will just be there with just co-workers, we figured this would be a nice test. There are a lot of trips on the horizon, so I wanted to make sure I started small.

I have my next PET scan is scheduled for Monday, November 10th. When I have those clear tests in hand, Brent and I are planning on celebrating with my first glass of wine. I didn't want to drink before then for a few reasons. 1) The effects of radiation are still in progress. I stopped early, so I didn't want to take any risks with how the treatment may work. 2) If my throat is at all still irritated, the alcohol would not feel well - I wasn't interested in testing that out. Would you? I will see Dr. Chen after the PET scan and one of the biggest things I want to talk to him about it my PORT. I really want it out of my chest. From all the statistics surrounding Hodgkin's Lymphoma patients, there is a 95% cure rate with it never returning. With two clean scans, how much longer will I have to wait to get it removed. Not going to lie, it's an eye sore - really freaks people out and as a results I end up having to dress to hide it all the time. That's not easy....maybe if sweaters were worn here, but at 70-80 degrees, not happening. So this subject will come up again in a few more weeks.

It's been fantastic to feel alive again. Brent and I have been able to go out to dinners and run errands. Yes, the recovery process will take some time, but the little clips I can have each day remind me what I have to look forward to as I work towards a full recovery.

Radiation Appointment today -

So I went in to see Dr. Woodhouse today. I hadn't seen him since the day I was admitted. I knew going into this appointment that I was done, but at the same time I know very little about radiation....I was willing to hear him out. He felt around in my neck and we sat and had a chat. He wanted to know what Dr Chen (oncologist) and Dr. Zelner (throat Dr.) felt. I told them they felt I have done enough and that I agreed. He felt the same way- phew! I have another PET scan early November, so he would like a call with my results. Based on that test, we can make any future decisions, but let's be honest, I am not planning on doing this again!!

I asked for my radiation mask. I figured I might need a Halloween costume, right? Keep in mind, the thick piece around the edge was locked to the radiation table, good times! Here is a photo of it for your viewing pleasure, enjoy.....

Sorry about the delay!

Okay, when I had the opportunity to get my life back a little, I took it! Sorry about not keep you up to date. Let me back it up a little....
I went and saw my oncologist, Dr. Chen, last Wednesday to discuss what he thought I should do (continue treatment, stop, wait etc). He felt I have done enough treatment. He, Brent and I had some talks and got some questions answered, but basically I will have another PET scan early November. Other then that, go back to the real world.

On Thursday, I went and saw Dr. Zelner, my throat Doctor. He wanted to do a follow-up after leaving the hospital to make sure I was getting better and not losing weight etc. Everything checked out in terms of where I am at now, but I wanted to know about long term damage. He felt I would make a full recovery, but was concerned if I was going to continue radiation. I indicated that it was up to me and that what he had to say would help make my decision. He felt that if I continued with the 2nd half of radiation that I would be back to where I was and would most likely be worse off. The biggest problem was that I would create more scar tissue and it would most likely not heal the 2nd time. So he pretty much said, if you do more radiation he feels I would be on liquid foods the rest of my life. So with that being said - I am done!

I am going to see my radiation Dr this week to make sure he knows what I have decided. No one can change my mind at this point. Radiation was painful and my body did not like it.

As with everything else, I am finally eating real food again - even foods I have to chew. I am doing what I can to get myself back to "normal". I am doing some walks and trying to put on some weight. I am definitely taking it one day at a time, but every day is getting better and better. We have been having a lot of meetings in the office, so I am doing everything I can to get myself there and to stay as long as I can. Getting back into full work mode will definitely take some time - just happy that I am getting back. No more dreadful days!

I'm finally home!

When I woke up yesterday, I knew I was done being in the hospital. I was feeling stronger and was able to get some food in. I was no longer on pain medications, so why did I need to lay there and take up a bed? I was able to sit and talk with multiple Doctors before getting the final approval for discharge. I can't even describe the feeling of getting unplugged from the machine, where I was no longer tangled up in IV lines....it was fantastic!

When I got home, Brent made me some pasta (I am continuing on the non-chocking foods) before completely passing out for at least an hour. I woke up in the 8th inning of the Sox game, so was able to watch Boston win again! Yeah Lester!

I never would have thought that the side effects I would encounter from radiation could get this bad. I would have never thought I made it through all of chemo to sit in a hospital for a week. I am not sure if I did a good enough job researching the side effects of radiation?!? I know all the doctors said they have never seen anything so bad (after so few treatments), but 25% of my esophagus getting completely fried wasn't even on my radar. I have numerous appointments over the next week, but in my mind continuing radiation isn't an option.

Overall, my throat still hurts, wouldn't say I am in pain....just uncomfortable. I eat really slow and have to chase everything I eat with water. I am trying to catch up with work, last week was the first time I haven't been able to work during all treatment. Not fun not being able to work and hard catching up.

I will keep you posted as I visit with all my doctors.

Hospital Update

Okay, Brent brought in his computer today - so I will do my best to give a short, but thorough update on my status. Since Wednesday, a lot has happened. It was over a week since I had eaten, was getting more and more weak and didn't feel like I was healing much. The decision was made to give me a PPN which is a combination of amino acids, sodium, potassium etc. They base what goes into this bag of "food" on a blood test of what my body is deficient in. I got the PPN on Thursday and that started a slight turn.

With the nutrients, I felt my body was able to help heal itself and I was able to sleep a lot better. I was also beginning to take less and less pain medication. By no means was the burning gone, just more bearable. The PPN was being given in my forearm which began to ache and get puffy. My veins couldn't take all the sugars from the PPN so we had to come up with a plan B. The inserted a PIC line in my arm. It's in my left arm (between my bicep and tricep) and it's a catheter that runs from there to the main artery center chest. Don't worry, they had trouble getting it in - as with every other procedure I have. It kept running into my PORT (which I already have in my chest). They finally got it in the right position on the third try.

I am sure some of you are asking, why do you have a PIC when you have a PORT?? Remember all my chemo treatments and my temperamental PORT- machine beeping? Well, the "food" has to stay on a pump and my PORT has a pinching problem that won't allow it to be on a pump. Having the PIC also allows me to have a TPN which has even more nutrients then the PPN.

I had the PIC line put in about 6pm last night and my arm is killing me. I think it's because it took them a few tries to get it in....but each hour it is getting a little better.

My roommate left yesterday, so I had the room to myself, it was GREAT! Not only did I get to sit here and watch the SOX game in peace and quiet, but I also slept really well. Instead of waking up every two hours, I slept from 11-6am and then off and on until 8. Felt great. When I woke up, breakfast was already here. I decided to go for it - how much can I get down?!? It took me close to an hour, but I managed to get a bowl of Cream of Wheat down, along with a small bottle of water! I must say, a strong motivation on forcing to eat this morning was that I got weighed, down about 15 pounds - not good at all.

Brent, Mom and I sat and had a long talk. I feel I am getting better. I don't need the pain meds and I am eating, not a lot, but eating. If I can get some dinner down, breakfast and lunch tomorrow....I want to be able to go home Sunday night. We are going to see how each meal goes before making any "official" decisions.

Yes, baby steps, but progress....

I Was Admitted

Okay, I am on my blackberry so this is going to be a short post for now.
After returning from the ER I had the reaction to the Codeine. I was able to sleep a few hours before I just starting getting sick. I was up from about 1:30am until 6:45am when Brent and I headed to the DR. (We debated all night which way we were going to go and decided having my DR admit me was better then the other way around).
I was admitted Monday about 11am, after roughly 4 days of not eating or drinking. I lost too much weight and was in a LOT of pain. They put me on all sorts of IVs. Yesterday morning they put a camera down my throat to take some pictures and saw how bad it was. Fire engine red and raw. They took a few biopsies that I won't have the results for until another few days. What we do know is Radiation did this. It was never happened this fast to anyone (another rarity, fantastic).
They are planning on keeping me until I can eat & drink on my own, or I'll end up back here...and so far I haven't progressed far.
The only thing that will heal me is time...I'll keep you posted.

Finally gave in - went to the ER

I called the on-call doctor at my Radiologist this morning, he was the same DR that was on call yesterday. I updated him on my status and we both agreed I should do everything I can to stay hydrated and come see him Monday morning. He agreed that the pain meds I am currently taking are not strong enough, but he won't prescribe morphine over the phone....so really I was still in the same position as the day before. Dad came to visit for a little bit and I knew he was just helpless, I was too. There wasn't anything I could do to get some nutrients in me. After many long hours of whimpering, not eating, pain and not drinking....I decided it was time to get some real help. I just couldn't take it anymore!

Brent and I went over to the ER at about 4:30pm. I absolutely HATE going there, especially with all the sick people sitting in there, and me being uncomfortable to begin with - it wasn't a journey I was looking forward to. When we walked in the door, there wasn't another person in sight. We were brought right into the back and I was sitting in a bed before 5 pm. Good deal, huh! They immediately started me on fluids, liquid carafate (numbing agent for esophagus and stomach) and dilaudid (pain killer). I also told them that I was concerned about my counts and since I didn't have my results back from yesterday - they did a work up right there. Turns out my counts are perfect! That's a VERY good thing, but it also means that everything that is going on is a true side effect of the esophagus inflammation. The Doctor also wanted a chest x-ray, which I was also happy to hear - that came back clear. It was the first time, since Wednesday night, where I was truly comfortable. Gotta love pain killers.

When I left, they gave me carafate to take home (which is used for people with stomach ulcers) and we are hoping that will help coat the bottom of my esophagus. All the other coating drugs I have seem to stop short. They also gave me a liquid Tylenol with Codeine - I took that and it would stay down, fantastic, I know! I am taking a break, trying to get food in and see what happens on the second try.

Tomorrow morning, Mom is coming up for my meeting with the Radiation Doctor. I want to sit and figure out what to do next. I really needed someone else to be with me for the decision even though, ultimately it's my decision. Part of me wants to stop right now, I can't go through this again. Another part of me really wants to be sure this never comes back and if one more week guarantees that, why not. So I am interested to learn what the Doctor has to say about it all before I make up my mind.

For right now, the fever seems to be gone....it keeps creeping back, but nothing as high as Friday night. I am so much more comfortable knowing I have fluids in me, so that if I do get another fever, I won't be in the super danger zone.

More to come tomorrow.....

What a night....

So yesterday, at about 5pm, Brent and I decided to take a nap. I wasn't feeling so hot and Brent was worn down from a week of teaching. Halfway through my nap, I was shivering, was too tired to think much of it....but, about an hour and a half later, when it was time to force ourselves awake, my face was on fire and feet were ice. Not a good sign. Turns out I had a fever of 101.5!! So we called Dr. Mom and just tried to find quick fixes that avoid me going to the ER. I was forcing Tylenol down and managed to get the fever down to 100 before going to bed. I definitely sweat most all the fever out of me, because I woke up with a very slight fever.

I am very concerned that my white counts are too low and that is why I am getting a fever. I haven't had blood work in two weeks. The swallowing has only gotten worse, not better. After I swallow, I feel the initial pain in my chest. Then, there is an after affect that shoots pain in my back (it's right on the opposite side of where it hurts on my chest). It's hard to describe how it feels, but basically it has me in tears just about every time I swallow.

So I was able to talk to my on-call Radiology Doctor and he suggested a few things, but I opted to go into Urgent Care with my Primary care. They gave me an order for blood work, which I did right away and a prescription. He didn't feel I needed a chest x-ray, because my lungs sound clear. The prescription is for a possible infection going on in my chest that might be causing the fever. So they really aren't 100% sure what's going on, but the Doctor and I did agree that a fever on a cancer patient is very different then a normal person getting a fever. So we will be waiting on the edge of our seats a little for those results.

So for the time being, the goal is to not get dehydrated. I have already lost 4 pounds in two days...so I have to find ways to get food in me. Brent crushed up a vicodin and put it in apple sauce and now I am going to force some of an instant breakfast. I really thought radiation was going to be the "easy" part, so far, it's quite the opposite!

Cancelled Radiation

I went in to the office today and told them what was going on. They had me go see the doctor before my treatment and he is having me take the next two days off. He wants to give my throat some time to heal and prescribed a gargle that has Benadryl, Maalox and Lidocaine. It helps to numb most of my throat for about 5 minutes. He also told me start taking my vicodin again as well. There wasn't even a question about getting that down. Brent crushed it up and we put it in apple sauce - worst tasting apple sauce I've ever had! Brent and I went shopping and loaded the fridge with ingredients for smoothies, yogurts, jello, ice cream and lots of soups. I am hoping that these next few days will help it heal so I can finish up all my treatments next week.

Can't swallow....

After radiation yesterday, it started to hit....a tight throat and having a hard time swallowing. Tonight we went our for dinner and I definitely hit a moment of sheer panic. I know that I need to take really small bites and eat slow or if feels like I am trying to swallow pieces of glass, but this was worse then that. Have you ever "almost" choked on a piece of steak? When just a little air can get through? That is what it is like. Ben and Brent just looked at me, about to give me the heimlich, but air was getting threw, so we just waited. I could feel it going all the way down my throat and over an hour and half later, I can still feel it in my chest. From now on, I am staying with liquid and softer foods....if I decide to want to chew anything, it will be beyond a small bite.

Of course, yesterday I met with the Doctor, it was right after my treatment - right before I started having problems. That will be my first call tomorrow, because my goodness, this isn't a comfortable feeling.

Nothing new.....

It's nice to have not much to report, means I am coming around. I am still tired, have more trouble falling asleep then ever - I think it's because I don't want to forget something. Chemo brain is still in effect, but not even close to what it was. I am trying to get into the office, it's been hard to keep up. I guess life in general has been hard to keep up with. If you just pushed pause on your life, six months go by, then push play again....what would you expect. I want to be able to just go at the same pace, but it's not the case, I am about 1/4th the pace with the mentality of 100 %. So I am doing my best to balance it all. What makes it difficult as well is when I see people I haven't seen in a while and there is that look of shock when they see me. It's hard to swallow sometimes. I see myself every day, so I forget the shock of it all, but I get constant reminders daily.

I am starting my second week of radiation, 6 treatments down, 13 to go.......

Fun Fact

Brent and I went for a walk last night, we went .74 miles. We averaged, well I averaged, 40 min mile pace (I was using Brent's Garmin HR monitor & timer w/GPS). My heart rate was 85-90 just about the entire time until I got home. I climbed up the stairs to our front door, about 12 steps, and my HR spiked to 120. From 120 it continued to climb to 130-135 for at least the next minute before dropping back down. Quite a difference from a few months ago, but a workout none-the-less.......

Day 1 of Radiation

So today was the first radiation treatment. Dad ended up working in Long Beach today, so he was able to take me to my appointment. We got to the office about 12:45pm and we were back in the car leaving at 1:04pm. It was all very quick - the longest part was sitting and waiting. I had dad come with me into the room, so he could see the crazy contraption and he was able to watch on a screen (outside the room) the entire procedure.

As I was initially walking into the radiation room, there were two armed guards standing next to a door - come to find out a criminal was getting prepped for radiation as well. Ha, I guess they need treatment too, right?

So, to actually describe what happened today is kinda hard, because I didn't feel anything. I was actually about to ask when it was going to start and they were taking everything off. I did have a tight throat when I left, not sure if that was more of a mental side effect or a true side effect?? It definitely feels a little like a sun burn, but other then that, nothing.

After my radiation appointment, I had my lung Dr appointment. It started off with him saying basically that your lung function is off the chart. I was like, here we go....
After talking for a while, he understood what I was saying. There are a few things that may be going on, but he wants to do some further testing to figure it out. First, my side effects may be caused from a blood clot - but all my heart test aren't showing that. He is ordering some stress tests and more tests. Just trying to narrow down a few things. The stress test will determine if it is my heart, lungs or just being out of shape that is causing the shortness of breath. He wants me in ASAP, so do I, because I don't want the side effects (if any) from radiation to kick in. I am trying to schedule those appointments, but apparently the scheduler leaves at 3 pm, so I missed her?!? Go figure....

Simulation

Today was a little overwhelming. I can't quite pin a reason. I think it's because I am starting to feel good, starting to get into the office, run errands and just be normal....and then I get smacked back to reality that I am still not done.

Above are all the markings I had put on today. There was just so much go on, all these markings and before I knew it, they put another tattoo on me. This time, it's up on the side of my neck - a tough place to hide. With the face mask on my head, it was hard to see everything happening around me - machines moving etc. By no means was this painful, just a lot of action and not much explaining.

The biggest bit of information that IS important is, I will be going daily, starting Monday (1pm), through October 3rd. I am not sure what will happen after that, I am going to call Dr. Chen to see when I will go in for my next PET scan and visit with him. But I think for the time being, my weekly blood draws might stop...the less poking, the better!

I found a photo of someone in radiation - so take a look at this. It has everything except the wrist straps: http://www.thisidea.net/hd/images/radiation.jpg

Update

Not too much new to report, that's a good thing, right? This past weekend, Jon and Monica came down to visit. We had a great time, we were able to help mom unpack and had some good 'ole quality time together. Monica is about 14 weeks pregnant now, so she is just starting to show!

My main goal over this next week is to get rest, stay healthy and to put on a few pounds. Overall, I have maintained my weight really well - I think years of learning how to maintain, lose, and gain has helped me a lot. I have no idea what to expect next week and if I will have trouble eating?? I am planning on not being able to eat too much, so the extra weight will help me not get too weak.

I am trying to get my life back a little. I went into the office twice already, only for 2-3 hrs. Just to feel "normal" and to get a few things done. It's great to be there and things get done a lot faster for me there...but at the same time, I end up socializing. Everyone there has been so supportive, its great to see them all again. Hopefully through treatment next week I can keep coming into the office once or twice and build from there. I am anxious to get back to where I was, but my body also lets me know when I take it too far. What ends up happening is I crash....I tried to help mom unpack this weekend (don't worry, wasn't carrying anything). I was just unwrapping things, taking the dog out etc. It was a total of about 4 hours of trying to help. The following day I couldn't move. It was like the day after chemo feeling....so I definitely learned my lesson! I am trying to listen to my body cues and to sit down when I am being told to and to eat when I am told to....(this is my body telling me, not anyone else - I am subborn like that!)

I have my simulation on Friday as well as some blood work - next step is almost upon me!

Pre-Radiation Tests

I went it for my 2nd of 3 appointments before Radiation can "officially" begin. I was definitely filled with some anxiety, because I really had NO idea what was going to happen today. I thought I was just going in for a CT scan, but I also got fitted for a mask and got my tattoo.....

When I got there, got to get in the most flattering blue gown, the one that has your bottom flapping in the wind. Thank goodness I didn't have to undress waist down :) So I went back to a room with the machine for the CT scan. Then the mask was explained to me. The mask is like straight out of the Silence of the Lambs. I didn't know if I should start saying "Clarisse" or "Luke, I am your father"....Anyways, It went from mid skull to my chin. It's to protect my face from any of the radiation, because they are going high up on my neck. It got soaked in some warm water and then it was molded to my face. I guess I get to keep it when I am done, so I will get a picture up at that point.

So the mask was molded to my face, next step was to get my positioning on the table. I laid down with my head in a mold, my knees over a pillow kinda thing and my feet flat up against a board. Felt like the sit and reach a little from gym class. I had wrist straps on that were connected to the board at my feet. The idea is to keep my body as still as possible, especially my shoulders - don't want them in the cross fire! So just picture me, laying there with the crazy mask, arms tied down - seemed a bit nuts and I was trying not to bust out laughing.

Once in place, I had my CT scan. That only took about 4 minutes. They will use that along with my original PET scan I hand carried it to come up with the pattern and places they will radiate. Next was the tattoo. To be honest, I wasn't happy about this. I had always promised myself I wouldn't get one, unless it really meant something to me. My Grandpa Charles had a fishing hook on his arm.He always told us never to get one, because your skins grows as you get old...he would squeeze his arm together so we could make it out. So I had all these ideas in my head of what it would be like - how many dots/X's would they have to put on me, how noticeable would they be, etc. It was a quick process - he took some ink and a needle and just pushed it right into my skin. He decided I only needed 1, because I would be wearing the face mask and my skin was so light (guess it helps to be pale in radiation). He figured they would have no trouble seeing it.
Look carefully, you might not see it :) It's center chest, that little dot. I don't think my Grandpa would be angry about this one....



After the appointment, I went for my first haircut since treatment. I can't even try to describe how uncomfortable it is to walk into a hair salon with no hair on your head. It could have been more me then them. Either way, I got my hair all trimmed up and looking less sloppy!

Donation

I just received an amazing gift from the Christopher Steele Foundation. One of our TYR athletes, Kevin Zakrzewski, is the co-founder and events director for the foundation. To make a long story short, they sent me some money to help with all the medical bills. I never thought something like this would happen to me and by no means was I financially prepared. It's been great to know what kind of people are out there to just reach out their hands to help. If you are interested in learning more or donating to the foundation, the website is:

http://www.christophersteelefoundation.org/

Thanks!!

Radiation appointment

So I met with my radiation Doctor today, Dr. Woodhouse. He has a great personality and we hit it off right away - always a good sign. Hopefully this will all make sense as I type it....we are estimating 3-4 weeks of radiation. I will go in everyday, M-F, for about 20-30 minutes. I will go to the Cancer center in Fountain Valley, which is about a 10 minute drive from my house.

Over the next few weeks, we are going to monitor my blood counts and get some preliminary testing done. I have a CT scan next week. They will compare this scan to my original PET scan (with all the tumors) and put them together to have a computerized image of where they will radiate. I will be radiated on both my neck and my center chest. I will also be getting a tattoo on my chest (and no it's not one that will wash off) to allow for accuracy in the radiation placement. He says it will be small, a blue dot, but still, I'm not happy with the idea of more body changes. The tattoo is because when I breathe, my chest naturally rises and falls. The tattoo will keep the reference point - I wonder if insurance will pay to get that off when I am done?!?

The side effects are small to large....small being, minor skin discoloration (will go away), sore throat, trouble swallowing and fatigue. The larger side effects being that I may be more prone to breast cancer (because I am getting radiated in that area), thyroid issues, difficulty breathing (lungs will be effected), possible heart issues (also getting part of my heart) and weight loss. Of course the larger side effects are things he has to say, but aren't 100% likely. He is going to keep an eye on my lungs, especially because I am already having issues. He is also going to keep an eye on my heart - which is under stress and showing some abnormalities. I am getting a low dose of radiation, about 1/2 the amount a normal person would get. I am getting that, because I have no cancer cells in my body right now. If my body still had active tumors, then a higher radiation dose would be necessary. So, because of that, I think the larger side effects are less likely.

Dr. Woodhouse also suggested not having radiation. He had a patient come in who was against having it. But he and I felt the same....the PET scan shows no cancer cells, but the cancer cells have to be large enough to show up on the scan, it doesn't mean there aren't any there. The radiation will just kill the rest of whatever else is left. Plus, if I didn't have radiation I would have a lot more stress and anxiety going into follow up scans wondering if the cancer is back. I want to finish and close this chapter in my life. If I do everything right, there is something like a 95 % remission rate where the cancer never returns. That's what I want.

Final Chemo is DONE!

So I went to my final chemo this morning, # 8. It went smooth, got home before noon - it goes faster when I have one less drug. I got home, felt good for a little bit but then it hit. It definitely comes in waves and a lot has to do with the temperature of the apartment. It got a little warmer and I almost lost it. I was over heating and feeling like garbage, mom got me cold cloths etc. Always helps to have a nurse sitting next to you! I didn't get too much food in me until about 6 pm tonight....so it was good that I finally got some calories in me. I will take something to help me sleep tonight, sleep always makes me feel better.

On Thursday, I am meeting with the radiation DR. So I will know more about my next step at that point. I have been told a lot of things about what may happen during radiation and the big one being my esophagus. It may get burned during the treatments and could have a really hard time swallowing - thus lose weight. So I won't get too alarmed until I talk to the DR and make sure I have all my facts straight.

The great thing is today was the last day of them accessing my port. It does bother me a lot. It will still have to stay in my chest until next summer or fall (2009)....so hopefully I don't scare too many people at the pool when I go swimming! I am sure it will cause a lot of stares and questions, but no more then I have had to deal with now.

I thought about taking a picture in the oncologists office, to capture my last moments, but then I thought about the other people sitting there. One lady was there my last treatment, it was her first treatment and she just broke down crying. It was a horrible thing to watch and brought back a lot of memories and feelings. Another man came in to the office to donate his drugs. He was stopping all treatment, nothing was killing all his cancer and he has been fighting for over 50 years. He wants to live the rest of his life without all the drugs in his system...it's just a waiting game for him now.
I will celebrate in my own way, but not at the expense of others who have their own challenges. Yes, we are all going through the same things and I know that I can be an example of it working, but that's not me either. I have never been a "look at me" kind of person and I especially didn't want it to come across at look how lucky I am and too bad for you. I will celebrate when I am truly done. I still have some hurdles to get over and have a long way to go to get back to where I want to be. Each day is a celebration in it's own way. I am surrounded by such great people, why is this day any different then tomorrow or yesterday, really?? I am still here, I am still breathing and I am still cancer free!

So, I am just trying to take it easy.....more to come on Thursday after my appointment.

Annoying!

There are some many side effects that come along with Chemotherapy, I couldn't possibly name all of them....but the most recent one is driving me CRAZY! My eye lashes are falling out. I have roughly 10 a day floating around my eyeball. Most of the time they are the really small ones you can't see so well....so I keep rubbing my eye to figure out what's bothering it and this little lash is what I find, ugh!

So yes, even though my body is clean, I am still having Chemo. With each Chemo cycle comes more side effects, fatigue, and more hair loss etc. I keep getting this question a lot - why are you still getting chemo if you are clear? Let's look at it this way, would you want to have to go through this again? I would rather go a little longer to MAKE SURE it's gone, rather then having to go back into treatment in 6 mo-1 year. It's one last final zap.

Other then the lashes, pretty much the same side effects as before - the hardest one to deal with is not being able to sleep. I know there are sleeping aids out there, but who wants to take a pill every night for that, especially with all the toxins already in my body. Truthfully, I sat around all day long reading an entire book and started another one. How can my body really be that tired from reading books? I can't take walks or exercise, I am sure that would help?? But I am still having trouble breathing, so when I am here by myself, it's not a good idea.....plus, I don't know what's going on. I don't want to push it if I am causing permanent damage. I have to wait a few more weeks to get into the lung doctor.

Don't take "normality" for granted!

Update

So not too much is new on the health front. I had blood taken today and will be going in for my final chemo treatment on Tuesday. Overall, my energy level is back up, feeling good - just trying to hold back doing too much so that I am strong going into the final treatment. I just scheduled my appointment with my Radiation Doctor, Dr. Woodhouse. We will be meeting on Thursday of next week. I really wanted to get in as soon as I could to come up with a game plan. I know I will have to wait a few weeks before radiation starts - to get my counts normal, but the Dr. will be able to tell me how many weeks of radiation I will be having. Plus, to be honest, I know very little about the process; side effects, what is it, how long each treatment takes, where I will go for each treatment. I know I will be going daily, but that's about all I know.

The weekend so far -

This weekend has been pretty slow. To be honest, I haven't been feeling well. I have been really weak, having trouble getting food in....the usually stuff. I know I have one more chemo treatment left, which I am so excited about, but I still have to take this disease one day at a time. I can't get ahead of myself dreaming about the vacations I will be on or what adventure I want to go on next. It will be baby steps to recovery. Seriously, I haven't left my apartment since my treatment on Tuesday, so forget running away on a camping trip...how about being able to take a walk every day.... or being able to take a shower standing up every day, that would be a great start (yes, you read that right, I have to sit in the tub and shower, because I get really light headed). To be honest, I think talking about those kinds of things are just discouraging me. Believe me it's not a matter of WANT, it's that I physically CAN'T, yet. I just start getting excited about the idea of being 'normal Erin' again and then practically faint trying to make my lunch. I get snapped right back into reality very quickly.

Every time I get excited about maybe doing things again, Brent reminds me that I will have to take it slow. Sometimes it's easier for him to see where I am really at. I know I am a strong person and will most likely hurt myself trying to throw myself back into things again....it's a good thing he's holding me back!

I know Cancer has changed me. It has changed how I look at life and what is important. I don't know why this happened to me and I won't kill myself trying to figure that out. I know it will come to me, in it's on time.

Treatment update.....

So we went to meet with Dr. Chen today and what I was hoping for what actually happened. Since I had my first treatment in cycle 4 yesterday, I assumed best case scenario would be one more chemo session....and that is what I was told. Tuesday, August 26th will mark my 8th and final chemo session. Mom was about to jump out of her chair. What Brent, Mom and I couldn't stop laughing about in the parking lot is we were back to the original information we thought we were given; 3-4 cycles, 6 - 8 treatments. Remember a few weeks back when I thought I misheard him and that I would really be going 6 - 8 cycles, 12-16 treatments....boy oh boy, it's so hard to keep everything straight sometimes! I also know that they weren't sure how well my body would react, so everything was up in the air.

So I will have my last chemo in less then two weeks. We will wait a few weeks to get my counts up and to make sure they level off there before beginning radiation. My radiation will be very localized to the left side of my neck and center chest. I will be meeting with my radiation doctor as soon as I can set up an appointment - need it approved by my insurance company first. All I know right now is that he/she will determine the longevity of the treatment and it will be either 4 or 5 weeks of daily radiation (M-F). I have roughly 3 more blood tests, so the poking is going to slow down by a lot - my veins are VERY happy with that news!

I will have a follow up PET scan at the completion of radiation and will have those every 3 months for the first year and then be spread them out a little more as time goes on. If it were to come back, which it will not, would be within the first year.

I am still scheduled to see a lung doctor in about a month, it's the earliest I was able to get an appointment. It will be good to talk to someone specifically about what is going on with my lungs. I am planning on trying to call the office in a few days to see if I can get in any sooner then a month.

Other then that, I can see the end. It will all be more final after I meet with the radiation doctor, but it looks like I will be able to get back to the east coast for sure for Christmas, YEAH!

Chemo # 7

I have to start off by saying Congratulations to Matt Grevers - the TYR athlete who won a an Olympic Silver in last nights 100 back. Amazing swim on his part, especially when this isn't even an event he was training for all year!

I went into my treatment this morning and my results were there....I just had to sit and wait over an hour for Dr. Chen to come into the office. I guess when you are a DR you can come in really late in the morning ;0 So it turns out that my heart is fine. We still don't know what's going on, but no major problems are showing up on my lung or heart tests. We went ahead and removed the lung drug, because that did show a decrease in my capacity. So, I was happy with the decision.

I am still waiting for my pre-approval to see a lung doctor, I just got one for a heart Doctor, but not sure why I needed that?? I can hopefully talk with the lung Doctor about what's going on and get some answers. I am going in to see Dr. Chen tomorrow to ask a LOT of questions about my plan from here. Mom will be joining Brent and I, which is a VERY good thing, because I am quite out of it the few days after each treatment...and I am not sure how good my questions would have been.

I am feeling alright today. Not completely in a fetal position or anything, been able to eat, so that's good. Just a little out of it and tired. I will let you know how tomorrow goes....

Chemo # 7 tomorrow??

I don't know much more then I did on Friday. I took my echo and my oncologist still doesn't have the results. They have been trying hard to get them released, but the hospital is being difficult. So I am going into my treatment tomorrow, just hoping they have the results...if not, no treatment. I don't want to get the chemo medication that is causing my breathing problem and won't know that until I have the results...

A lot has been going on in my family. My Mom has made it to California, permanently. She is starting as a professor at University of San Diego this fall and my brother Matt has gone back east to start his PhD at Columbia.

So much is going on in my family, it's sometimes hard to keep up. They are all very big things and things that will change our lives forever - teaching, school, and cancer. What has always amazed me is how a family is able to pull together in good times and in bad. I wouldn't change my family for anything!

Testing

So I was told to push back my chemo treatment. I went in to the hospital this morning for my cardio echo this morning instead. Once I get those results, I would have my next chemo treatment, number #7. We want to make sure we know what is going on and remove the right drug. We figured that having the test this morning that I would have the results Monday, so treatment will be on Tuesday.
I still have a follow up appointment with Dr. Chen on Wednesday to go over a plan. I will have to rework all my appointments to get my treatments back to Fridays and not sure if I need blood work on Wednesday if I had chemo on Wednesday? I will keep you updated as I learn about results etc.

Cancer Free??

Let me start at the beginning. As you know, I have been having trouble with my lungs. I started somewhat stalking Dr. Chen. I wanted to make sure we talked about what we were going to do in terms of my protocol on Friday - were we going to remove the drug causing the problem? So he called me today. We were able to talk a little about how I was feeling etc and we decided we would remove the drug (Bleomycin). Then he proceeded to tell me that he had my results from my PFT yesterday. He said that my test showed NO activity and that he saw no tumors. I was shocked. I asked him "are you sure, both my neck and chest are clear?" He said yes. I hung up the phone and just started making calls....Mom, Dad, Matt, Jon etc. They were like, are you sure the tumors are gone? Don't get your hopes up. I started to wonder if I heard what I wanted to hear and not what was said (Chemo brain). I was actually on the phone with Monica when another private call came in, which is usually my doctor. It was Dr. Chen again. He started thinking that maybe it wasn't my lungs, but maybe my heart. I am out of breath just laying here, not just walking around. Adriamycin is the drug that affects my heart, so he wants to make sure he removes the correct drug and can't do that until he knows for sure what is going on. So he ordered a stat cardio echo and wants that done before my next chemo treatment. So, hopefully I will have the echo tomorrow or I will move my chemo to next week. I then asked him to repeat what he said in the first call, asking '"so I really don't have any more tumors?" He said "I see no more cancer cells in your body on this PET". I just started laughing, out of shock, didn't know what else to do. He said he is also surprised with how well my body responded to treatment.


I am not 100% sure what the means in terms of treatment longevity, but regardless each treatment I have is a preventative to make sure it NEVER comes back. I no longer have to sit here wondering if I will be done by Thanksgiving/Christmas. I know it is gone! I will continue on with my next chemo. I am meeting with Dr. Chen on Wednesday of next week. I will ask him all my questions and hopefully come up with a plan of attack from here on out. I just can't decide if I want to sit here and laugh or cry? I am just so happy that this may be over soon and I am ready to move on with my life! I will keep you posted as I know more, just wanted to share the news :)

Lung update

I really wish I had some hard findings to report, but that's not the case. I don't know much more then I did when I left the hospital last Monday. My lung capacity has been depleted as a result of Bleomycin (a antitumor antibiotic). It is one of the 4 chemo drugs part of my protocal (ABVD). Meg Brown was telling me this was a drug that Lance Armstrong was told he could NOT be on if he ever wanted to race again. Not that I want to race again, but I liked the lung capacity I had. So, for right now I know my lungs were operating at a 140% - much higher them normal, but let's be honest I am a non-smoking swimmer, what would you expect?!? I am not at about 120%. Yes, higher then 100%, but my 100% is 140. Jennifer (Dr. Chen's assistant) had been bugging the hospital all last week for my results, they won't release them, yadda-yadda. When they finally faxed them over there was not an interpretation of them. So we have to wait until Monday or Tuesday. In the meantime, Dr. Chen put in a pre-approval for me to see a lung doctor. That really made me happy. I have a lot of questions going through my head - what are the long terms effects with staying on Bleomycin? I know there is a really high success rate of people who have my cancer and the ABVD protocol, so by taking me off that, what are the success rates? What are my options?

On Tuesday, I have my PET scan, another assessment to determine when I am. I am meeting with Dr. Chen on the 13th to go over those results.

Today, Bethany is flying in from VA. She will be here all week and will be around for my treatment on Friday. It will be great to see her - last time I saw her was at her wedding :)

Earthquake!!

Today was absolutely insane. If you have never felt an earthquake, it's really hard to describe. I think the last time I checked, it was a 5.4, pretty big - felt from LA to San Diego across to Vegas! It was about 11:45 am and I was trying to lay down for an afternoon nap. Brent and Lara decided to take a little time this morning to go kayaking, so they weren't home. I was resting when I thought one of my neighbors was being rude by slamming their garage. I sat there for a second and realized the vase next to my bed was hopping and all the pictures on the walls were rocking. It took me about 10 seconds to register what was actually going on. I ran out of the room and looked into the living room...it looked like we had a house boat. The entire apartment was moving in a wave and everything was continuing to shake - completely unreal. Everyone was safe, no one that I know of got hurt, just a crazy experience!

On the medical side - I was at the hospital for about 2 hours yesterday. I had a CT scan and a PFT done. It was pretty uneventful - I did get poked in both my arms though, the nurse had trouble finding my veins, lucky me! As of right now, all I know is that my lungs are still clear (no tumors). The PFT results were not ready for my doctor. I did ask the technician for a printout of the results (trying to be pro-active), but didn't get me far. I will call them tomorrow to see what is going on and to hopefully prevent this from getting much worse. My energy level has been a little higher this round, which has been fantastic. Just trying to enjoy feeling slightly normal.....

Breathing

All weekend I was having trouble breathing. I am fine with short breaths, but when I try to breath in deep, it feels like someone is sitting on my chest. Half the time, it would also result in me coughing. Having excellent lungs my entire life, this wasn't feeling comfortable and sent up red flags. I had been told if I ever had trouble breathing, I needed to let them know ASAP. Luckily Dr. Chen was the on call doctor yesterday, so I was able to talk to him. One of the Chemo drugs I am on affects my lungs, so they are scheduling a prompt PFT (Pulmonary Function Test) today. I am awaiting the call back from the DR saying I am pre-approved and then I will head over to the hospital. I am really not sure what the results will mean??
I will keep you posted.

Chemo # 6

Another treatment down. So far, this round has gone slightly better then the last round. Even though the nurses felt the shortening of treatment #5 wouldn't have a major effect, treatment #6 took about 45 min longer and I feel better....make your own assessment. I think it made a difference.
I did a good job of resting when I got home yesterday. I wanted to make sure I was rested when Lara arrived. I did have a really hard time sleeping last night, even after taking Benadryl. I woke up about 3:30 am and didn't fall back to sleep until about 8 am. I waited for the sun to rise, so I could read a book and just laid there staring at walls. Not sure what was keeping me up - there was nothing specific on my mind?? So, I am looking forward to a nice nap :) This could have put me at half way in treatment, YEAH!

Day to Day

So I have Chemo # 6 tomorrow morning, the good thing is I never really felt great this round - so I won't fear losing that, ha. I definitely turned a mental corner this week. I had been thinking: How many more? When am I done? When can I have fun with all my friends again? When can I travel?
I knew I was strong, but it's hard when the world keeps going and I am at a standstill. I came to realize that this is a one time deal for me. If it takes me 16 treatments, then I want 17 or 18. I want to make sure this stuff never comes back! If I have to stop my life, I have to stop my life. There is a plan for me and I just haven't seen it in it's entirety just yet. Everything happens for a reason, right? The hardest things in life we are handed are just to make us stronger and this by far, is the hardest thing I have come across.

I will have some company again this weekend, Lara is flying in. This will be the first time she will see me right after chemo, so we plan on watching a lot of movies. It will be great to see her again - always full of energy and smiles!

Blinders

What I have realized these last few days is that 90 % of our population walks around with blinders on. People cut you off in traffic, not caring if you have to slam on your breaks. Then I watch people cut in lines, walk into you in crowds.....it's time for people to open their eyes and realize they are not the center of this world. There are other people here, look around! What set me off was at Angels Stadium this weekend. How could people not notice a bald girl, walking slow - obviously having a hard time walking? They kept cutting me off, stepping in front of me, walking into me and so on. I am completely guilty of this as well, pre-cancer. Please, if you notice yourself doing this, take a deep breath and look around! Life is too short to run around with blinders on....

Okay, back to me :) The game went alright. I enjoyed being there, but it was really hard. I tried hard not to let the people around me make me frustrated. It was more getting to my seats. Brent carried me on his back for a portion of our walk - if I go again, I have to have a wheel chair. Once I got to my seat, I was able to cheer along with the entire stadium - "Lets go Red Sox!" I almost forgot I was in Cali and not Boston. I attached a photo of where we were sitting, it was perfect. We had plenty of space and were in the shade. Too bad the Sox didn't have a good game. The picture definitely makes it look like we can't see the game, but I assure you, we could!

Jon and Monica were here all weekend, we had a nice time just laying around, reading, and watching movies. Matt and Alex were able to come up on Sunday - it's always great to have the family around.

This round hasn't gotten too much better, in terms of how I am feeling. Still really tired and having trouble eating. My counts are good, I've been taking them every other day, so I guess that is the trick for me. One round at a time, one day at a time.

This round...

It's been a few days since my last post....sorry about that. This round has taken a lot more out of me. I have my analysis of why I am dead this round - I think my treatment was a lot shorter. That makes sense, doesn't it? If I get the same amount of drugs in my system, in a shorter period of time, it can only affect how I feel. I had my treatment in 30-45min faster then normal. It should have triggered a reaction from me when they nurse was like, it's going really fast, but you should be okay?!? Oh well. It's the reality of this round - just have to deal.

My shots arrived on time! YEAH! PrecisionRX is proving they can do things right. I decided to keep my shots spread out a little this round, because my counts were perfect last round. I took one on Saturday, one Monday and one today. Brent and I found a way to make them less painful, so that's been a great relief. I will take the next two tomorrow and Friday. Overall, I am much more tired and fatigued then "normal" chemo cycles. I am having a really hard time sleeping and eating this time. The first few days, I was unable to leave my bed...but have now been able to move back to the couch. I have a measurement of how I am doing, the stairs to my oncologist. There are about 25 steps (haven't actually counted). At first, I was able to take them 2-3 at a time, run up them. Today, it took me about 5 minutes and couldn't breathe at the top. I am determined to not take the elevator! It is also just a slight reality check each time I go in. Each day I am feeling a little better and I am doing my best to remind myself that feeling like garbage is VERY good thing. It means the cancer cells are being killed and chemo is working. If I felt good, then we'd have a problem!

One of our athletes, Eric Shanteau was just diagnosed with testicular cancer. He was told the week before Olympic Trials and he proceed to kick ass at trials and earn his spot on the US Olympic team! He is being highly monitored and has decided to wait for any treatment/surgery until after the games. Please keep him in your thoughts as well.

Friday morning, Jon and Monica are coming to visit. It will be great to see them. Dad got us all tickets to the Red Sox vs Angels game on Saturday. Not sure how that will go, but I am going to try my best to go! Handicap section, here we come.....

Chemo # 5

I wanted to start off by saying Happy Birthday to Alex (my sister-in-law). Have a great time tonight and we will celebrate like rock stars next year!!

I was definitely out of it most of the day yesterday, wasn't able to write...sorry about being a day late with the update....
Brent was able to sit with me again, he kept an eye on my IV bags the entire time. I finished my treatment in about 3 hours. I wasn't feeling so good before treatment, I am not sure if was more anxiety and nerves vs just plain not feeling well. I dread these days. It's like as soon as I start to feel better, can take walks or bring myself to the store by myself, it's Friday and time to start all over again. My co-worker Laura came over Thursday night, cooked me dinner and just hung out. She filled me in on all the office news :) Was great to have someone else to talk to. She wanted to know if I was tired and ready for bed - all I could say is I have nothing to look forward to tomorrow, so I like these days to last as long as possible. It's not that I don't understand that I need the chemo, I know it's working...I just hate the feelings that surround it. The great thing was that I got my new blackberry. I was able to sit and answer emails during treatment. I told a few coaches where I was, I think I freaked them out a little ;0 What was great was that I didn't have to sit on my computer when I got home, to catch up with the day!

When I got home, I was more beat then I ever had been. Felt like a train ran over me. I have a small window when I get home where I can force food in me - then it all hits. So I ate a little bagel and Gatorade...then was out for a while. I found a nice home in my bed for a few hours before I was ready to come out. My brother keeps reminding me that I feel like this because the drugs are working - so I just keep reminding that every time I feel bad. I started to feel more hungry as the day went one, I was able to eat a small bin of blueberries and had another bagel with some peanut butter. I picked as a small bit of chicken as well - wanted to make sure I got as much protein in as possible. I had a weird pain down the side of my neck when I got home. It was on the right side, ear to collar bone. (this is the opposite side from my tumors). Of course I kept poking around to make sure I didn't feel any bumps - even if my CT scan didn't show it. The sad part was that it was sore to the touch, so I wasn't helping the situation. I decided to knock myself out with Benedryl and get as much sleep as possible - the drugs would help with my neck, the body itches, and sleeping.

I slept for about 11 hours and feel much different today. I would be lying if I said I felt good. My body is really weak, but the overall crappiness has gone down a lot. I just keep reading books - they help distract me. I am going to try to keep a constant flow of food and drink today - especially when it takes me over an hour to finish a mini bagel.

Brent gave me a shot a little bit ago. I have one more before I need the new shipment. Hopefully they have them here by Monday or it may be a repeat of the last treatment - but we won't plan on that. I will give them the benefit of the doubt that it was a one-time mess up. They need to prove themselves now!

Scan update

So the news wasn't dramatically different from what I heard yesterday. The tumors are getting smaller in my neck, but they can't tell much with my chest. The tumors in my chest were the larger ones. I am going to get the CD from my first test today, hopefully, and get it over to the hospital. After they compare the first test to the second, Dr. Chen will get me those results -usually takes about a week. Regardless of those results, I am still proceeding with treatments. I will be going through with cycles 3 and 4 (each cycle is 2 treatments)...so having chemo a minimum of 4 more times, most likely going 6 cycles.

I think I misheard Dr. Chen at my initial diagnosis when he said I was going 6 - 8 cycles. I heard that as 6 - 8 treatments. 6-8 cycles means 12-16 treatments. OUCH! I won't sit here and lie, was a tough blow. I know that even being told I had to do treatment again this Friday was going to be hard to hear. I have completed 2 cycles, 4 treatments, only 1/3rd of my target (hopefully). It's just the beginning really....

I am in the process of scheduling another PET scan. That is one of the original tests I took that shows the tumor activity. It takes an hour or so, get to drink a cup of contrast - YUM! I will have that test the first full week of August. So I get the CT scan after every 2 cycles and the PET after every 4 cycles.

Yes, I am sad about it, a little discouraged. But at the same time, now I know. I need to be mentally prepared for 8 more treatments. I can't control how long it is going to take to get well, I can only control the here and now. I guess in my warped, bubble reality, I was going to be able to jet away to Jamaica next month. I just wanted to take some time for myself and enjoy life post-treatment. Now I am looking forward to Thanksgiving hoping that will be a celebration of being Cancer free for the first time...

Pre-Scan News

I have been feeling pretty strong these past few days. I realized that I am very energetic when I sit in one place. As soon as I start moving around, it really wears me out. I tried going into the office a little today - kinda feels like a truck ran over me. So staying on my couch is most likely the best plan for now.

I just got a call from Jennifer (my Oncologists assistant). I am going to have to get a CD made from my first scan to get it compared to my second scan. They want the most accurate assessment of what is going on. From what she was able to tell me, I still have tumors (bummer)..but will get a more detailed analysis tomorrow and most likely even more when the results are compared side to side.

I have my meeting with Dr. Chen tomorrow to go over my results.
More to come tomorrow....

4th of July

I had my body scan on Thursday - pretty uneventful except for the nurse who decided putting my IV on the inside of my forearm was a great idea?!? I was literally yelling at her how bad it hurt, and she just kept digging. Karma will get her later! I will get those results on Wednesday of next week. My shot finally arrived on Thursday as well, actually UPS came while we were at the hospital. So I missed the shipment. I pleaded with the UPS people to come back (otherwise I wasn't going to get the shipment until Monday). So the UPS man came back - seriously, does that ever happen?? So finally I am set until my next chemo session. Other then that, I am feeling pretty good. Been tired, but been eating well and managing my energy well too. I keep escaping for naps and been reading a lot of books, so it's helping to make me rest.

We had some great visitors Thursday as well, Tim and Kydani! I coached them both at UConn and Tim now lives out here in LA. We had them over for dinner :)

After we watched trials on TV, Tim and Kydani took off and Brent and I headed down to Matt and Alex's. It's always great to get out of the house! We have been doing a lot of eating and me a lot of sleeping. Of course, I make the entire house watch trials too....doesn't get much better than that for me right now.

Here are a few pictures we took during the weekend so far. Enjoy -

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.