Glow bug treatments have begun...

So I found out last weekend that more people than I ever thought are actually reading this thing! Hello ladies!! With that being said, I really should update more often. But you know what they say…no news is good news.

I started radiation this week. Oh boy – this is a tough one!!! I am pretty claustrophobic and have a hard time being restrained…both of which are being put to the test with this part of the “cancer ass kicking” treatments. I could explain what exactly they do, but instead I will show you. Below is what I will be doing everyday for the next 7 weeks at 3:30. I gotta tell you – I think I would rather be sitting at my desk at work!!! I am working very hard to go to my “happy place” when they strap me down by my head. Today I did pretty well; but my goal is to not freak out inside when they first strap me down. It is easier to just be in my happy place first rather than having to talk myself out of hell first.  I found out today that I will not have 25 treatments as originally thought...no, no I will have 33 treatments!!!  Crazy!!!  Doug is going to be able to use me as a night light!!!

The mask is so tight that when they take it off, my face has the waffle print on it!!!

I am feeling pretty good right now. I have some fatigue – but I have already succumbed to the fact that that will be around throughout the treatment. I coach Special Olympics Tennis and that started back up for the season on Sunday. It is great to see my athletes and to be back out on the court again. I also joined the co-ed softball team that D played on last year. I know this might seem a little over zealous – but I have never been one to sit around. Even if I can’t play all the time – just being able to play once in a while will be awesome. If I don’t try, I will never know…

Radiation doctor appointment #1...

I went on Friday, March 5th to meet with Dr. Milito at Oakwood Cancer Center. This is where I will receive my radiation treatments. The appointment went well. We discussed how he was going to measure me for the radiation, the mask that I will be fitted for, and the side effects.

Dr. Milito said that since I am not even thirty yet he wants to be very precise in is measurements of where the radiation will hit. Apparently in older people who have cancer in the neck area, they will just radiate the entire neck area. The doctor said he doesn’t want to do that with me and would like to be very precise and only radiate what is needed. I say ‘thank you’!!! I will be fitted for a mesh mask that will hold my head in place during treatment. Not only will it hold my head in place, it will ensure that my head is in the same position every time, thus the radiation hitting the same correct spot every time.

Now for the side effects…how lovely!! I have a very tricky spot of cancer…some of it is on the very back of my tongue (in my neck). This will be very tricky to radiate and will come along with wonderful side effects. The doctor said that I will lose my sense of taste, and that it probably won’t come back for at least a year. My mouth is going to get very, very sore and it will become hard for me to chew and swallow. He said my desire to eat will diminish and I will lose weight. Now the weight loss part doesn’t bother me. I have said through this whole thing that if there is a silver lining…at least I could afford to lose more weight. My concern is making sure I am getting the right nutrients. So it sounds like I will be drinking my meals in the form of protein shakes and other supplements. And then there is the fatigue…that is a side effect that carries over from chemo to radiation. Sounds like more nap times!

The doctor then looked at me and said “you need two more weeks off”. D told him that I have been working the whole time. He looked a little shocked at that, but then clarified that I need two more weeks off from the chemo before we start radiation. He said I looked very, very tired and run down. Huh…I had even wore eye makeup that day as to not look like that. I guess I am not fooling anybody.

I go this Thursday, March 11th for the final appointment before radiation starts. I will get a CAT scan for the doctor to base his measurement off of. They will also be fitting me for the lovely mesh mask…think Jason with more holes. And I will get my ID swipe card. Every patient has a swipe badge that they have to bring with them. The machine scans the badge and pulls up all of the information needed for the radiation. This ensures that no one ever gets the wrong radiation treatment.

I am very anxious for this all to start…mainly so it can end. I am so over this cancer crap!!! But sadly my body isn’t – I am still battling with the fatigue. I have also been battling with myself and how others see me. There are some people in my life who I truly believe they think that I am done with everything and all better because the chemo is done. But the fact of the matter is (as my husband so wisely put it) chemo was the first stage of treatment and radiation is the second…I will not be “all better” for a little longer yet. All I keep telling myself is “patience my dear, patience.”  But don't get me wrong, I still feel very positive about this whole thing and like Dori in Finding Nemo I "just keep swimming, just keep swimming..."

**Edited to add...the treatments will be 20 minutes a day, 5 days a week, for at least 5 weeks.  I will know whether it will be more than 5 weeks after the doctor does all of his measurements and calculations.

Last chemo done...

Hello…I’m still here. Sorry I know I am terrible at posting, but to be honest life is pretty boring and there is not much happening. I finished up chemo last Friday, February 26th. I can’t tell you how happy I am about this. Especially since this last treatment has really beaten me down. The nausea has been a little much. I have Zofran to take for the nausea but I haven’t taken it since my first treatment…it causes the worst headaches and I would rather be nauseous.

Like I said life is kind of boring right now. Sometimes boring can be good, but I am so ready to be back into life. I have been able to get to the gym here and there (pretty much the week before the next chemo treatment) and it has been a teaser for me. I love going to the gym. The weather is starting to show glimmers of spring which brings a smile to my face. Spring brings new life…things will soon be blooming, my Special Olympics Tennis will be starting, and radiation will begin. I can not wait to see my athletes again and start training. I just pray I have the energy to keep up; but I have an awesome assistant coach and support system, so I am sure all will be bueno!!!

Tomorrow is my appointment with the radiation doctor at Oakwood Cancer Center. I feel good about Oakwood because Dr. Milito specializes in mouth and throat cancers and takes special precautions in regards to the side effects. I am very anxious to get all of the information and get the next phase started!!!

So that’s what has been up…not much of anything. Still fighting, still trying to stay strong!!

Still here & still kicking!!!

I know it has been a while since I have posted…I’m sorry. I am fine really. I had my second round of chemo on February 5th. Things have been going ok since then. I still get sick when I try to eat certain foods. My diet has mainly consisted of grilled cheese sandwiches, eggs, and pancakes (don’t ask me, but the Bisquick Low Fat Pancake mix seems to work for me). I can’t do milk, which kills me, because I love milk!! I have been very shy to try any pasta for fear of the sauce. And I am pretty sure my blood stream has now been replaced with diet ginger ale. But all and all I am ok with the food situation because I know that this too shall pass. And besides when all of this chemo and radiation crap is over with – I am getting the biggest order of sushi!!!!

As I type this I can feel the neuropathy starting in my finger tips. I knew it was a side effect, but I hadn’t been affected until now. The little stubbles that were on my head from shaving it are few and far between. And my eyebrows are starting to fall out/off. It still amazes me how your body changes from the chemo. I look at my face and can’t believe how “tired” I look. I read on the ACS’s website that chemo patients should replace their makeup with new once they start chemo – something with getting rid of the old germs. So I went to Ulta this past Sunday and asked the girl at the Bare Escentuals counter to help me pick out some new eye makeup that would make me look less dead. She did an awesome job, and I purchased a new eye shadow and mascara. I figured I would try to get people to notice my eyes before they notice the scarf on my head. The scale says I have only lost 5 pounds, but most of my clothes are swimming on me, especially my pants. I am hoping that the small weight loss means I have lost fat and not muscle. I worked very, very hard to get that muscle built up!!!

Every day I am more amazed at how overwhelming generous people have been. I have always known that the friends and family that I have in my life are awesome – otherwise they wouldn’t be here. But I am so grateful for how wonderful they have all been. I was going to list everything here, but it would take me a couple hours to do that, and I am sure you guys don’t want to read a post that long. But my friends & family have brought me some of the nicest things, from meals, flowers, scarves, blankets, and beautiful crocheted items, the outpouring from people has made me cry several times. And the cards!!! Oh my, the cards!! I get cards from people a couple times a week. Again – I can not convey just how grateful I am to have everyone in my life. With that said…if you are reading this and thinking “crap – I haven’t sent or made her anything – I guess I should”, please know that as I am grateful for what I have received, but I in no way expect anything. Heck just knowing that the people who are reading this blog are interested enough in me to see how I am doing means the world to me.

I am trying very, very hard to remain as “normal” as possible throughout this whole thing. I look at my health a lot differently than other people do. I actually hate my health – or lack there of. It pisses me off to no end that every time I get “better” from one thing, I get knocked on my ass with another. That is why I try to remain life as normal every time I get sick. It is more of a “screw you” to the universe. Mentally I am so strong and ready to take on anything, but it seems like my body fights me. Right now I want nothing more than to get off work and go to the gym. But instead, I get off work early now because I can’t make it through a whole day, I go home and I take a nap until D gets home. Last week was not very nice; I had a really bad chest cold that knocked me down. I believe I was asleep more than I was awake. This week I want so bad to go to the gym. I am so tired of being told that I really need to rest. I just want to scream “Just because I have cancer, doesn’t mean I’m dead!!!!!” I have never been the type to just stop life for anything. I feel like some people feel that because I have cancer that I should just sit around. Well just kill me now, because that is not the life I want to live. I know I have always been stubborn and will test my limits to the max, but if I don’t try – how will I know!!!!

So that’s been what is happening…not much. The next round of chemo is on February 26th. That will hopefully be the last one and then I move on to radiation, but I have to meet with the radiation doctor first.

No more hair...

Last night I had D shave my head. As I stated before, I woke up on Thursday, January 28th and found my hair starting to fall out. Well it didn’t take long – by Sunday I had bald spots and was wearing a hat or scarf. It was so thin and looked terrible.

I stood in the bathroom feeling completely open and vulnerable as I felt the clippers taking away the one thing I had always liked about myself. I cried the whole time D cut. I kept my eyes closed as I was afraid to look in the mirror. When it was all said and done I took a deep breath and looked in the mirror…and screamed!!! The person looking back at me, was not me, it was some sickly looking girl with mascara smeared from the tears. D grabbed me and hugged me; I could see and hear his tears. He felt so sorry for me. And although I am not usually the type, I felt sorry for myself.

It is very hard to look in the mirror right now, as I am sure it will be for some time. I feel much, much more comfortable with a head covering on, whether it is a scarf or a hat. Plus my head is so cold and my scalp is so tender to touch. The stubble that is left on my head is falling out, but it is easier to see that than clumps of long hair.

We had gone shopping on Sunday for some new clothes for D and me some scarves. I am amazed how hard it is to find silk scarves. I came home from the Gettysburg Outlets, Capital City Mall, and Target with just two scarves!!! I have looked online for some. But I think tonight I am going to stop by Jo-Ann Fabrics and see if I can just buy some fabric in the same square size as the scarves I bought and put a hem around. I think this will be a cheaper alternative. Plus I can pick fabric I like and that will match my wardrobe.

On Saturday, my friend Jess and I took a trip to Fleetwood (outside of Reading) to meet a very, very nice lady who sells wigs. What a surreal experience that was. I never thought I would be sitting in a chair at my age getting wigs tried on me. After some doozies, I believe I found a good match. The color is almost the exact same as my natural color and the style looks to be my style. “The Wig Lady” (that’s the name of her business), Faye, had the color wig I wanted but not the style. I picked the style out of a book. I wear or wore my hair straight and parted to the left. Some wigs do not part, and are fluffy on top. I can tell you with certainty that I am not a fluffy hair kind of girl. Faye tried one wig on me that made me look like C.C. DaVille, no joke!! So anyway – the type of wig I got is a monofilament wig – which means it looks like a real scalp, it can be parted, and is a flat style. I like flat!! I am hoping to be able to pick it up next week.

Other than the hair loss – I am feeling pretty good. I didn’t go to the gym last night because…well, I just didn’t feel like leaving the house. I am hoping to get there tonight, even if it is only to do a little bit – at least it will be something!!!

Quick Update

Hello peeps!!! Sorry for the lack of posts, I promise I will try to get better at this updating thing. The funny thing is, it feels kind of weird to update people or talk about me, all I have ever thought is “like people really care”. But I know that people really DO care – just weird to write about myself you know.
All and all I can’t really complain. Each day is different. There are days where I am very nauseous and days where I feel pretty good. Eating has been a challenge. I feel like every day is an experiment. There are some days where all I can eat are bagels and then other days I seem to do ok with more normal foods. I don’t really like going out to eat anymore though – I just feel like it is a waste of money.

Last Thursday, the 21st was the worst day I have had. I woke up nauseous, dizzy, and felt like a Mac Truck had ran me down. I tried to suck it up and drove into work. But by the time I got to my office I felt worse. I called my chemo nurse and explained everything. She said she wanted me to be seen. Because I was getting hot and then cold, she said that my white blood cell count could be low. Sure enough – it was quite low. So I earned myself four hours at the clinic getting IV meds. Fortunately this Monday, the 25th, when I went in for lab work, my counts were coming back up nicely. I was very happy with that; other wise I would have ended up in the hospital. No thank you!!!

Fatigue is something that I was not expecting. I had plans to carry on life as normal on days when I didn’t have chemo. My body has said other wise. As silly as it sounds, I would much rather deal with the nausea than to feel so tired. I talked to my cousin, Kim, who is a breast cancer survivor to see how she dealt with it. She told me that the fatigue is normal and it will play a big factor in my life for a while. What a hard pill to swallow. Before all of this I was the person who went to the gym at least 5 days a week. Now – I am having trouble even making it there. I went on Tuesday. I made it a mere 18 minutes on the elliptical before I found myself puking my guts out in the bathroom. I will keep on attempting this until I can do it!!!

I have also talked to my boss about having a modified work schedule. I have proposed working 8-3 everyday with a half hour lunch. He said he is willing to let me have a modified schedule but he needed to think about what it would be. I have not heard anything back yet. It was very hard for me to ask for that. I have not had the best luck with my health in my life. And although my work gets done, my time at work has suffered…and now here I am saying “well, something else is now wrong with me…” I hate to show that weakness!!!

Today is a sad day for me. I woke up this morning to find that my hair is starting to fall out. Now, I knew it was coming and I thought I prepared myself for it; but I don’t think anything prepares you for holding handfuls of your hair in your hands. I suspect that over the next few days it will get very thin and I will make that call to my hair stylist to have my head shaved. I keep on joking that it is a good thing I look cute in hats!

Thanks to my awesome friend, Jess, I will be heading to Reading on Saturday to look at getting a wig. I still am not sure if I want a wig, but it doesn’t hurt to meet with someone and look.

So that is what is up. I am still here and I am still fighting!!!! I may have off days – but this fucking cancer will not win!!!!!

Chemo 5 Days out...

So today it has been 5 days since I received my first R-CHOP chemo treatment.  I feel pretty good.  The weekend was a little shaky.  Saturday I felt pretty good up until the evening.  By the evening it felt like I was "getting something"...you know how you feel before a cold sets in.  I really didn't eat all weekend.  I found pieces of bagels seemed to be ok.  My appetite is coming back slowly, but I still can only eat small amounts. 

My biggest "complaint" is the tiredness.  I don't know how to explain it, other than I just feel drained.  I went to the doctor on Monday, because my mouth was so sore.  Turns out it is a side effect from the chemo.  Good Lord, this chemo crap has a lot of side effects!!!  Anyway...when I was at the doctor's I expressed just how tired I was feeling.  I wasn't expecting it to hit me so fast, but she assured me that this is all very normal.  I wish I was able to take naps mid way through my work day...I feel like that would really help, but alas...

Yesterday I had a small breakdown.  I really wanted to go to the gym, but was so tired I fell asleep before I could get my gym clothes on.  Work was pretty bad.  My job can sometimes be pretty stressful, especially with year end / year begin.  Take that normal stress and add my new life stress and it just compounded.  I am so lucky to have Douglas...I came home, I vented, I cried and was my rock!  He is so wonderful that it makes me sad sometimes to think that he got the fuzzy end of the stick in the whole "in sickness and in health" thing. 

Today was a much better day - I really worked hard to remain focused at work and got a lot accomplished.  And I was able to go to the gym this evening.  I only did a half hour on the elliptical and some abs...but it was something, and that is all I really wanted.  I started to get nauseous while I was doing my ab workout and I...are you ready for this, you're not going to believe it...I STOPPED!!!  I know, I know, try and contain yourselves!!  Now you all know that I am the person who fights through pretty much anything, but this time it's different.  This time it's my life I don't want to jeopardize anything in the fight to get it back to where it was.  It's a whole new leaf for me...I will listen to my body!!!

A friend asked me today how I was doing "it"...how I was keeping it all together.  I told her that I have my moments of weakness and that my outlook on life has changed....I take things one day at a time!!!