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.