Cancer can be a lonely place....

Sometimes cancer can be a very lonely place. I often wonder what switch is turned on in some people when someone is diagnosed with a very serious illness. Many people who you thought were some of the closest people to you seem to just disappear. Is it fear of being near someone who is going through a traumatic experience and not wanting that trauma or dare I say "cancer" to brush off on you and your life? Or the fact that you are too afraid to get close to that person because mortality is something that is more realistic. It is very hard anymore to find someone who truly wants to be a support to me besides family and who I feel wants to actually be a true friend. I understand its a hard thing to try to be close to someone who is sick. They aren't necessarily the same person they used to be. They can't go out all the time. There mind is usually on other things now and a lot of times the focus is on trying to just get through the day feeling half decent. I know I am far from the same person then I used to be. Things that used to be important to me before are no longer important. Trying to fit in with others or materialism is one of the last things I worry about and I also realized the top most important things in my life now is God, my Husband & my loving family. I couldn't do anything without those key things in my life. They never let me down.

 I think the thing that hurts the most is seeing the changes in those people who at one point or another in my life I thought truly cared and to just sit back and watch the changes in people amazes me after I got sick. Honestly, I don't really understand most of the time. I always thought before I got sick that the people and friends that surrounded me would be there through thick and thin no matter what,But I really came to the realization that unfortunately can be far from the truth. I have realized that I am not the only one this happens to. I have talked to others in cancer support groups and it seems like this happens to many of us...but still we question why and many times do not understand. A lot of times we don't get the answers either...we just have to realize that it is another hard lesson that must be learned. One thing I have learned talking with others is that usually the people who disappear out of your life or make them selves sparse are ones who don't know how to deal with things. They are typically the ones who just brush off emotions and try to live the "perfect" life on the outside and have for the most part never been through anything truly hard and traumatic in their lives which only makes it easier for them to sit in the background when its time to face something serious and to just pretend its not happening. Also, most of the time these are the people that if God forbid anything were to happen to that person, they would be the first to say or think "wow, I should have been a better friend or I should have done more." I also realized there is nothing I can do about that. I can just be me and keep fighting on. This is something I can not burden myself on worrying about too much so I thought blogging would help to get this topic off my mind a bit. I am a very strong person and if I can get through cancer each and every day, I can also deal with this.

Being only 26, I think has made this experience so much harder for me to deal with. You don't expect at my age to go through something like this. But I also think this experience is causing me to grow up..to realize what is important and what isn't...to not let people take me for granted and to try to live each and every day and moment to the fullest and if that means living those moments with fewer people then I maybe thought would be there to share them with...I am okay with that and life will continue to go on. Here's wishes for a beautiful week and many shared and blessed moments with the ones you love. Until next time....

Fresh air, bright sun and better days...

The smell of the fresh spring air refreshes every part of my body and soul. I love it. I have my Queen Pandora station playing this morning with the window open and just taking it all in. The nicer weather always makes me feel better and is definitely needed.

This week again has been a bit of a bumpy one...not so much for me this time, but for Jon. About two weeks ago Jon started feeling sick, but let it go for a week thinking it was just a basic cold or due to the weather being so up and down that it may have been a sinus infection. I noticed he started getting weaker and just not himself. He came up to me the one day and showed me a massive lump under his right armpit and automatically I was kinda freaked out. I told him he needed to get it checked out right away but stubborn Jon still waited another 3 days or so. So then on Tuesday he comes in from work so weak practically not being able to function...and the lump was much bigger and he just didn't look well at all...so off to the ER we went. We went in and the poor guy has a 101 degree fever...blood pressure was sky high and was just not looking good at all. He got some blood testing done and blood cultures...oh and i thought it was bad getting all the blood work I have to get done but the one needle they used for Jon for the blood cultures was one of the thickest needles I have seen..I had to look away for that one. They also came in and took Jon back for an ultrasound of the armpit to see if he had an abscessed. The ultrasound came back negative for the abscessed but he did have three enlarged 5cm lymph nodes under his armpit which were pressing on his nerves in his armpit which in turn was making his hands and fingers go numb and feel like they were on fire. The Dr gave Jon some IV pain medicine which then brought Jon into" happy lala land." Jon has never had pain medicine before like that so it was kinda funny to watch him. He kept looking at me with this glazed over look and telling me to "take some of this stuff home with us." I was glad this was helping with the pain he was having and also giving us a few laughs to lighten the mood. The Dr came in and told us that this could all be caused from something called Cat scratch fever. I thought this was honestly something made up because i heard the term before but never heard of anyone having it. He said that one of our cats could have scratched him or bit him and caused a bacteria infection to go through Jons lymph node system to his armpit. Jon and i couldn't remember when our cats even tried to scratch or bite us or anything so we are still a bit skeptical on this diagnosis and are still waiting for some of the blood results to see what exactly happened...until then we just wait. They gave Jon some antibiotics, steroids and some painkillers and he is feeling much better now and the lumps under his arm are pretty much completely gone and only a bit of puffiness is left. He is pretty darn close to being back to his good old wacky self. :-) Thank goodness! It was so hard to see Jon going through this and I am so glad he is better...it really is so hard to see your other half feeling so down. I love him so much.

As far as I go, I have been starting to feel somewhat better. Still sleeping quite a bit but getting a little bit more of my energy back. It is a good feeling. lets hope it stays that way for a bit. One of the things that I have been in awe of lately is my hair and the changes that are being made to it due to this chemo. It is not just the hair on my head either..my eyebrows have turned a blondish/white and my leg hair grows in white too(which i'm not complaining about) I have never had a gray hair (that I have seen anyway) and now it is growing in pure white. Also it is getting thinner and thinner. I always said I was an old soul.... :-) Its crazy because I do color my hair but this white hair is the type of hair that when i worked in the salon was a pain in the ass to color. It just doesn't take to color well. So it is what it is. I have been thinking about getting a fun wig. I have always had finer hair but now that its getting finer and finer and harder to style, I am thinking why not get a wig of a style I always wanted but couldn't have. Also with the fatigue it will be so nice to just be able to put on a little makeup and throw on a wig and head out the door. Plus i think i could really have fun with this. Something I am really considering. Well that is all for now my friends, go out and enjoy this beautiful day...until next time.

Hair starting to thin pretty bad...normally i would never take a picture like this but I want my blog to show all the sides of cancer....

Look at those lovely white roots!! ;-)

Live Simply...but love fully...

So it has been a while since I blogged--my last blog I was waiting to get scan results back. Many things have happened since then- Good news is my scans came back perfectly stable which is wonderful! It is always wonderful to hear the words stable :-)

 Also since my last blog my Sister and I went to the much anticipated Justin Timberlake concert together. We drove up to Philly together and stayed overnight. It was so much fun, it always is with my Sister. We laugh so hard practically the whole time. The concert was absolutely amazing and Justin is an awesome performer!! The only things I would have changed were having to deal with bad hand/foot syndrome( so I had to sit several times during the performance) and also that our camera broke right before the concert( so, sorry no pictures!) but other then that it was an amazing memory I will never forget!!! Just sitting here typing this is making me laugh thinking about how fun that night was! Oh my, when the two of us are together...everyone better watch out!

Some other things that have happened- I took a two week break from my chemo due to the hand/foot syndrome that I just mentioned in the paragraph above. Boy, is that a hard side effect to deal with- my hands and feet were on fire and raw and my skin was peeling off .I could barely walk and couldn't do simple things- it was absolutely horrible...but it makes you realize how much you appreciate the little things like use of your hands and feet.The break from the chemo gave my hands and feet enough time to heal over for now-which is a relief. I started back on my chemo this past Monday on a lower dose then I was at (80mg)- we are hoping and praying this works to keep the hand/foot syndrome and other side effects more under control but still be able to control and keep the cancer stable. Always praying that stable and healing are in God's plans for me.

 

 Another happening since last time.. is once again my TSH went completely whack again. I have been feeling extreme tiredness- barely able to get out of bed and once I do get out of bed just wanting to go back into bed and not functioning too well- Well here my last blood work showed that my TSH level was at 148!! My oncology nurse couldn't believe this and said if this was true I could be in big trouble. So we decided to do repeat blood work. I got those results back and still my TSH was 116-a normal TSH can run between 0.4-4.0- so as you can see my TSH was extremely high. When your TSH gets that high you can be at risk of possible coma if it continues to rise. So this is obviously pretty scary- We are thinking this happened because my last TSH results were getting a little too low and I was feeling very anxious and shaky and having heart palpitations- so we took away my cytomel which is a replacement T3 hormone and I was just taking the normal 200mg of synthroid- Well we are thinking taking all that away at the same time probably caused this. So now I am taking the 200mg synthroid plus 4- 5mg of cytomel to help lower my TSH and get it back to normal range- I go see Penn again at the end of the month so we will have a better idea of what is going on then!! Lets hope all goes well and things start to go back to normal and stay that way! I just have to mention, Jon has been absolutely amazing during this time of me dealing with all of these issues- He is right there to help me and has been keeping up with the house and hasn't complained once- I feel terrible about it but he always assures me that he just wants me to feel better and it is such a blessing that I have a Husband like him. He continues to amaze me everyday- He is so strong and I love him so much for going through this with me and being right by my side. He is wonderful.

 

One of the things I gave up for lent is Facebook- I need breaks from that- I get tired of communicating with people only through face book and I admit it can be very addicting and I don't want to hide behind it. It can be a great tool for some of my support groups but I feel is also a very easy way to "check up" on people and keep tabs of what's going on with people instead of just asking the actual person- and like I said ....just as guilty here at times!! Plus I figure there are many other ways people can get a hold of us if they really wanted too!! Jon and I have also decided just to take a few hours every day and turn off all media and just spend time talking and doing simple things like playing cards,games, listening to music or just simply talking to each other and spending time together in devotion and prayer more often. Quality time--its a good thing that I think todays world forgets about because of all the hustle and bustle of every day things that we can all get caught up in. I challenge you all to try it--just take at least an hour and just turn off all media- TV's, cell phones,everything and just spend some quality time with the ones you love--actually listen to somebody as they speak and devote all of yourself for that one hour to another person or persons....Until next time my friends.

The waiting game....

This post is going to be a little bit all over the place but that is kind of where my mind is right now, so I am just going to go with it.....

I'm playing the anxious game again. I just got my latest set of scans done and now I am waiting till my next Penn appointment for the results. It is very scary for me to wait for results. I really don't like it. It especially makes it a bit scarier when my last tumor marker blood work showed that they both went up which typically means there could be more cancer growth. I try my hardest not to live from scan to scan but sometimes that isn't so easy. The worry and reality of this cancer tends to set in especially during this little week span before my results appointment. Some days it is so hard to stay strong during all of this and to put on a happy face.

I get asked a lot when I talk to newer people about my cancer, what my prognosis is. I'm not sure if this is denial or what but I tell them I don't know and personally don't need to know...that is up to God and honestly I don't want to have a number labeled on my life. Some people who have cancer may feel better with a more specific time line, which I can completely understand why many people would want to know. In my eyes, I feel that no one can really tell me a true prognosis. Only God knows how many days We all have left on this Earth, and it actually gives me more peace of mind knowing that.

I have had a rough couple of days lately, the tiredness and "sick" feeling that I feel is just overwhelming. I just want to sleep and unfortunately lately is where I feel most comfortable. I feel bad about that because I know my Husband has been doing a lot lately and I think he gets frustrated. I feel like such a terrible wife sometimes and like a failure. I know Jon has had a lot of pressure on him lately....there hasn't been much work for him this winter and it has been a very hard couple of months. The tension in the house, can get high at times and I can feel it and I know I just add to it. I just want him to be happy and things to get better for us. I know God has a plan and that is something we pray about and trust in but like I said some days I just don't understand. Being a caretaker/ spouse to someone who is sick I feel can be just as hard or harder for the caretaker. Jon hates when he is called a caretaker ....He says this is just his job as my Husband ..." for better or worse, in sickness and in health...." I love him for that, and I know I would do the same for him, but I know it is a lot for him to handle at times ...I wish He could get a break from it all, because I know he needs it. I thank God every day though for putting a man like Jon in my life....I am very blessed to have a Husband like him, I just wish I could do more for him like he does for me. He deserves the best of everything and it kills me when I see him struggling and knowing that I am partially to blame for that. We weren't prepared for this, but then again,I don't see how anyone can be....some days I get angry.Before Jon and I were married we would have conversations about our future together. We would talk about our dreams and goals and one day having a family together. Then after getting married and starting what is supposed to be this new and wonderful chapter in our lives, everything changed in the blink of an eye and our world turned upside down. We realized our dreams had to shift and change and to be honest, it pissed me off. You always hear people say the 1st year of marriage is the hardest. Boy, was that truer then ever for us and we know it will never be easy for us. However, despite all of this in many ways it has and will continue to make us stronger then ever. We didn't get dealt the best hand but if anyone can deal with this, I know that we can get through this with each other and the support and love from our family and friends. When someone is diagnosed with cancer or any illness it is not just a diagnosis for that person but for everyone who is in their life. It is a struggle for everyone. I see that each and every day and this is yet another reason I really dislike and hate cancer. Although, I do hate it so very much...it sure does make you realize the love and strength you all have for one another and makes you realize how very precious life is and to not take anything or anyone for granted.

I continue to ask for prayers and love for Jon, my family & myself. That we continue to have the strength to get through each day that comes. I ask for prayers for Jon, that He can get some more work soon and that some stress can be lifted off of his shoulders and he can get some relief. I ask for prayers that my body and mind can heal from this cancer. I thank you all again for your continued prayers, support and love. Until next time....

To all of you "Patch Adams" in the world... Thank you....

My Husband and I watched the movie "Patch Adams" the other day. What a wonderful and amazing movie. I have seen it before when I was younger but my Husband has never seen it, so we decided to watch it together. Wouldn't it be absolutely amazing if all Doctors took a minute to watch this movie?? I think this movie should be a part of the curriculum to become a Dr. More Doctors need good bedside manner and should start treating patients as a human being, not just a disease or a money sign. I feel that love and showing that you truly care for a patient and their well being can help the healing process much more then people truly realize. Take that time out and laugh and share with them, bring their spirits up. In my past with Doctors I haven't had many connections at all, Many times, I could tell that I was just another number, another chart that they would take a quick look at and then move on. Finally after going to 6 or 7 different Drs for extreme pain and tenderness in my neck since I was 15 and being told it was basically nothing... I gave up. I felt that I was never listened to and just tossed aside. It was disheartening and upsetting. After a while I could no longer take the pain so I talked around and someone I graduated High school with referred me to Penn State Hershey Medical, So I thought okay, I'll give this one last try and I made an appointment and went. I am glad I did because by going there I regained new hope again. My surgeon who ended up doing my very long thyroid cancer surgery was different from any Dr I have ever had. You could tell he genuinely cared and had concern for Me. It was a wonderful feeling and to this day I feel so very blessed that God placed me in His Hands. I bring this up because watching Patch Adams reminded me of that and reminded me of my own "Patch Adams" that I was lucky enough to have. If you have never watched this movie, take the time and watch it. It is an inspiring movie with laughs, love and hope. Also, why not take the time and tell your Dr's to take a look at it too? Can't hurt right? I think we can all learn a valuable lesson from it! Until next time my friends...

Interesting 26th Birthday weekend.....

So my 26th birthday was on the 17th....wasn't the greatest birthday ever but I am just glad I am alive and breathing and have wonderful and amazing people who surround me. I woke up on my birthday morning and realized I was urinating blood( sorry if this post is a little TMI for some of you)....umm yeah talk about scary....I thought oh great what now.....I almost immediately messaged by oncology team to see if any of the medicines I was on had this side effect and none of them did that they were aware of ....so kept going with my day ...my sister and I had a lunch date and she was taking me out for my birthday!! My sis and I always have a fun time together but I knew something was wrong during lunch, because then the pain came on more intense

Love my sista!!

Quick stop after my birthday lunch with kelli lol...

 ....this was the most awful pain and pressure you can imagine....I was thinking that if I ever had a baby this may be similar to what it would feel like....so here I find out I most likely had a bad UTI ....I've never  had one of these before and oh my gosh do they suck!! I don't wish it on anyone!! So for my birthday I pretty much layed in bed in agonizing pain and just tried to relax as much as I could. The following day I had plans to go out to a local bar with my sister and brother in law where they had karaoke....I love going to karaoke nights...they are such a blast!!

 I was so bummed cause my pain was not letting up and I really didn't want to miss out on this...so with my husbands nudging we decided to go out anyway and thought maybe it would help take my mind off of the pain ....and it did for a little and it was really fun to see my brother, brother-in law and sister in law sing some karaoke but unfortunately I still wasn't "all there" because I was still somewhat focused on this pain and having to run to the bathroom all the time didn't help either!!! Sunday my lovely parents made up a birthday meal and got ice cream cake for us to help celebrate my birthday...usually every year I go over to their house and we celebrate, but unfortunately with how I was feeling this year it didn't work out as planned...but the meal was amazing and the ice cream cake was yummy!!! Thanks Mom & Dad!!!  I am now on my 3rd day of antibiotics and I am finally starting to feel normal again...thank goodness!! I'm hoping a few more days of the antibiotics and rest will kick it completely out and I will be good as new!! Just praying that after this I get a little "feel good" break....Jon and I don't need any more stress or things to deal with although I guess that is life for ya?? I just want a few days to feel really really good and then I'll go back to dealing with whatever!! I hope you all had a very blessed weekend!! Don't forget to take a moment to remember Martin Luther King today!!!

 God bless!
Until Next time....

A letter to Cancer...

I saw this and had to blog it....this was such a powerful message to me when I read it...

A letter to Cancer:

It may seem like you have control in my life right now, but you really don't.
Your presence only makes me stronger, braver, kinder, wiser.
I choose how I think, what I speak and how I love.
You will never be able to touch those things. NEVER.
The fear of your name no longer haunts my soul, because I know that my soul belongs to me and to God.You may take your claim on this frail outer shell but never on my divine spirit that cries out:
" I am not my body".My soul will run, leap and tower over your attempts to pull me down into despair.Those who surround me will fight with me to let it be known that we WILL NOT SURRENDER.Our hearts and souls are tied together in a lasting bond, that no amount of your impeding growth can break.

You see cancer, you do NOT own me.

I own myself.....and I will survive.

(- Ginger Johnson, 2014- Cancer survivor)


Until next time my friends.....