Week One...DONE!!!

So it’s now been a few days since my last post.   I have been doing slightly better eating, getting in about 50g of protein a day, but believe me it has been a constant battle.

I was told it was a good idea to get your teeth cleaned before starting chemo so last Tuesday I had a cleaning done.  Well don’t you know that they find a “cavity”, one on a tooth that I know has been just crumbling apart,  think I may have been grinding my teeth a bit while in school last year.  So now  I’m being told that I need to get that tooth taken care of because it should be done before I have surgery, chance of infection, blah, blah, blah.    So I go back on Monday to have work started and don’t you know that now it has now turned into a root canal and crown.  Cause really nothing I want more these days then to help me pass the time then to sit in a dentist chair getting a root canal.    I think this whole scenario led to me getting sick for the first time on Monday, but I had made it 6 days!!!  It was actually not as bad as I thought it was going to be, I think sometimes feeling nausea is worse than actually just getting sick.  But as you can imagine not a pretty sight having your mouth all numbed up with novocaine and getting sick, it was pretty pathetic if I do say so myself.

I followed-up with the Oncologist today  which included my first blood work done since starting chemo.  I'm glad to say that I'm doing pretty good.  I only lost 4 lbs, which is not bad, and my labs were all good, iron slightly low.  I guess it is the second week of lab work that you really get a better picture of what the chemo is doing to all of your levels so next week is a bit more important.  While at MGH today also managed to get an appointment with an acupuncturist to meet with me during my next chemo treatment, I'm hoping this will help with the nausea. 

So many people have been so generous with their time providing protein tips, their cooking skills, carting my ass around, and just sending me well wishes....I need to make sure I say thank you…so Thank You all very much!    I struggle being on the receiving end of so much generosity and good will but at the same time know that I am so very lucky for the true friends and people who care about me that I have in my life.

XOXO
Barbara

Never would I have imagined...

One issue I've never ever dreamed that I would have is not having an appetite.  It has been so unbelievable hard to eat and get fluids in.  All those time I ever tried to help feed someone and said "oh come on...just a little more" ...let me tell you now..."I am so sorry". 

So today is the day they said I should be feeling the worst.  I'm trying not to give into it but it is a struggle.  I'm not giving up yet...way to early for that...I'm determined to give this a good fight but I'm honestly suprised how quickly I got knocked down on my ass.  I'm supposed to eat 100g of protein a day....do you know how hard that is?  If anyone has any ideas or tips in how I can squeeze more in please feel free to share I am open to suggestions.  I'm looking for small quantity that packs a lot of protein (not just powered stuff).  I tried super hard yesterday and only got 33.5g in.  I can't wait for the freaky issues with my sensitivity to cold go away so I can have a huge strawberry bananna shake, but it has to be cold, drinking warm milkshakes is just wrong.

Poor little guy woke up at 3:30am sick last night and I had to send Dad in for Puke Patrol...I just couldn't do it.  I felt so bad not being able to be there for him, it really made me sad.  He is such a brave boy though and understands that I have to be careful about getting sick because the medicine not only kills my "bad cells" but also destroys my good ones making me weak and easier to get sick.  Still it's no fun not being able to take care of your only child when he needs you. 

My Mom is coming over today to visit... so I'm hoping that alone will make me feel better.  Of course she says she is going to come over to help clean, maybe do some laundry, just generally get things done around the house. So what have I been doing...yup..trying to clean and get things done around the house before she gets here.    One of my "nursing" friends is also supposed to be coming over later on for tea on her way to work today which I'm really looking forward to as well. 

Ohhh before I forget again too, I need to say thank you to my dear friend Kelli who helped make this blog look much better than I could have done on my own.  Thanks so much Kelli for all of your beautiful design elements and for letting me use the laptop so I can travel/blog,  which by the way is connected to the internet again thanks to my hubby.

Thats it for now...need to muster up the strength to actually go and eat something and take a shower.  I have at least been drinking a Carnation Instant Breakfast while writing this, don't be too jealous..its 14g of protein :-) 

Have a Great Weekened Everyone!!!   Barbara

1st Day of Chemo Follow Up

Things didn’t go quite as I had planned yesterday.  I might as well warn you that I’m not going to sugar coat anything and if that is going to turn you off from reading this well…then I'm sorry but so be it.  But I’ve asked my Dr.s to all be very straight forward with me and that is what I plan on doing when I talk or write about this.  

Maureen and I made it right on time to our appointment yesterday.  Notice I say “our” because the poor thing has agreed to go to all my chemo appointments, hee, hee, hee.  We had a nice corner area over looking the Charles River right at Longfellow Bridge, it was a beautiful day.  You are assigned the same nurse for all your Chemo treatments and I have a very wonderful nurse assigned to me.  They used my newly acquired super power; ok the power port in my chest to draw bloods, but super power sounds so much cooler.  I’m assuming that at one time or another we’ve all had blood drawn and let me tell you she already had like two tubes filled before I realized she was even doing it, it was great.

OK so on to the treatment itself.  First I had to talk like 5-6 pills, mostly for nausea, I think, I was just trying to be very compliant and she said take these and I did.  Then the first chemo med was a push med which using a syringe she “pushed” into my power port over maybe 10 minutes or so.  Side note that this med also makes my pee orange, and my tears orange, just incase you wanted to know.  Next drug had to be infused into my chest over two hours.  It did not hurt at all, barely knew it was even there or going in.  Great, finished around 1pm…now lets get the hell out of here. 

Well we are not even out of the hospital and side-effects start hitting me.  First my voice starts acting all Bobby Brady and I have no control over it.  Then the big side effect – sensitivity to cold.  This one I think is going to put me over the edge.  By the time we got home to Bridgewater around 2:30ish this side effect was in full swing, more about that in a bit.  But for the most part once I was home I told Maureen to go home, that I was fine and was going to just go lay down until it was time to get Paul off the school bus. 

Well once she left things just went down hill….the big D hit me, and then the Nausea (but don’t worry just dry heaves, ughhhh)  Then remember that sensitivity to cold side-effect, I can’t touch anything even remotely cold.  Door knobs, faucet handle, toilet flush, oh my gosh the soap from the hand pump…brutal.  Can’t drink anything cold and all I want is ice chips and ginger-ale but it kills to try and drink.  To top it all off during this I’m sweating like a pig and nausea.  It was horrible. 

About 9pm I broke down and called the Dr. who amazing called me back in less than 5 minutes.  They were surprised at how fast things hit me, usually they say it takes 4-5 days so start feeling sick (so I guess I still have something to look forward to) but it may have just all been anxiety related.  Apparently no matter how much I’d like to think I’m in control and will tell myself that I am, my mind has a mind of its own and at some point will let that anxiety get to me. 

Feeling much much better today, big sissy came over and took very good care of me.  We’ll see what the next few days have in store. 

As always thanks for taking the time to read my story, I know lately they have been pretty long but I do think it is helpful for me to get this off of my chest.   Please don't be shy about leaving comments if you'd like.

Hugs and Kisses - Barbara

Chemo Starts 8am 01/19/11

I know that this is my 5^th post but it still so hard to really wrap my head around the fact that I have Cancer.  It feels strange even saying it.  I was talking to my husband on Thursday night telling him how  I can’t believe how happy I am that my cancer has not spread, yet at the same time I can’t believe how happy I am…and I still have cancer.  Does that make sense to anyone else? 

If you know me, you know my friend Maureen who will be with me as I get my 1^st treatment tomorrow.  As long as we don’t hear “Wind Beneath My Wings” on the radio on the way into MGH I’m very optimistic that we will both be strong.  

Thanks once again for all of the love and support. 

xoxoxox

Muddle through Together

Whoa, posting this blog address to folks on FB opened some flood gates of love and support, what a remarkable feeling.  It feels so weird to be on the receiving end of so much support and love and it is amazing, but at the same time it really plays with your head.  Is everyone being nice to me because they think I’m going to die?  I like to think that I always did my best to be a nice person but then you think there is no way I could have been nice enough to deserve all of this love from everyone.  It’s becoming clear to me for sure that the psychological aspects of this disease are going to be just as much of a challenge, if not more, than the physical ones.

Once you tell people that you are sick or have cancer everything changes.   I was the same way when someone I knew got sick.  You don’t know what to say, you’re afraid you’ll say the wrong thing.  Please know that I totally understand that, and unless it is some really off the wall comment I don’t want anyone to be afraid of talking to me or worried that that they will say the wrong thing.  This is just as new to me as it is to you so I’m just as confused as to how to deal with stuff too.   We’ll just have to muddle through together. 

Good News  - All bandages came off today!!

The End of a Crazy Week

So some people have been asking me how I knew something was wrong with my stomach.  Basically I have been losing weight and I was not really putting much effort into it.  Those of you who know me know I’ve always had a…umm let’s call it a “healthy” appetite and it shrank tremendously.  I thought it was all due to the stress of losing my job and being out of work, then nursing school, taking the boards, trying to find a job.  I truly thought that I had an ulcer.  I’ve been seeing my primary off and on about it since the end of the summer; they put me on prilosec thinking it was maybe acid reflux or something.  Pain started to get really bad in November so I made a call to the Drs. and I was told to double up on the prilosec. At this time I also made and appt to see a GI specialist, unfortunately the earliest they could see me was 01/18/11.  Went to my primary again on 12/22/10 and she thought it would be a good idea for me to get and endoscopy before I went to see the GI Dr. so that I had something to show him.  Well it just so happened that the same GI Dr. I was scheduled to see on 01/18/11 was available the very next day for the endoscopy (12/23) so I had it done then.  He immediately knew something was wrong when he saw the inside of my stomach, did some biopsies and also had me sent down for an abdominal cat scan the same day.  I did not have my follow up appt with him until after Christmas and then we had a snow storm and my appt was cancelled so I did not get the news until 12/29/10. 

Today I am wrapping up one freaking nutso week that’s for sure.  Left the house at 6:30 am today to go to MGH with my Auntie Ann.  Had the echocardiogram so that the Oncologist one, knows my heart can handle the chemo-cocktail mix he has planned for me and two, to have a baseline for future echos due to nasty side effects from the chemo.  Checked out the “Images” salon to get some info on wigs...which just seems so odd to me, it’s going to be strange to have to wear a wig.  I suppose I don’t have to wear a wig but we’ll see.  I’m thinking if I do either going to have long blond or red hair for a change.

Ann and I had some time to spare between appointments so we visited the Tranquility Garden they have at the hospital which was beautiful and so peaceful…I’m sure it will be even more amazing once the weather gets warmer.  It is on the 8^th floor and over looks the Charles River.  I’m sure it will be a nice retreat in-between future appointments. 

A little bit after noon time I went to get my “power port”, which I think kind of qualifies me to be in some sort of super hero classification.  I even got a special card to put on my key chain and one to carry in my wallet to notify others of my status.  Truth is I need this port so they don’t blow out my veins with the chemo medicine.  They don’t sedate you completely and I think I was awake half the time and the other half just resting my eyes.  I knew I was a bit out of it because I kept thinking I was seeing spiders crawling all over the place.  I didn’t think I was in there for too long but according to Ann it took two hours. 

This is probably a good time for me to warn those of you who have offered to come to appointments with me about the down time.  Hopefully I’ll be able to schedule my appointments better in the future.  I had a total of 5 this week but managed to only have to go in town 3 times so that is good but again there is a LOT of down time and a LOT of waiting around.  My poor sisters sat around for hours this week with me and Ann did the same thing today.  Of course I LOVE the company but don’t say I didn’t warn you. 

Next week is the follow-up with the Oncologist and the week 1 of 9 of my Chemo treatments.  Sorry this post is so long but I’m hoping to not post for a few days and just enjoy time with the family, and hopefully some friends, this weekend. 

Thank you all so much for all the prayers and love and support you’ve been sending my way.  I honestly believe that it makes a huge difference.  It feels strange to be on the receiving end of so much goodness, but it is wonderful.

What a Snow Day....

Had the Laparoscopy today.  My sisters drove me into Boston in the middle of the major snow storm.  Figuring it would take us a long time we left at 9am for my 12 noon appointment.  Well it only took us 30 minutes to get there, and then I was told no one had cancelled so my surgery would not be performed until 3pm.  My poor sisters had to sit around and wait for so long, I'm so grateful that I had them with me.  They tell me that it was all worth while because we received great news.  With my sisters by my side (my poor husband had the flu) we were told that it appears that the cancer has not spread outside of my stomach.  I cannot even begin to explain what a relief it was to hear that news come out of the Dr.s mouth, it was as if a HUGE weight had been lifted off of my shoulders.  My sisters even gave me a tiny tiara to celebrate!  I still have a long tough battle ahead of me but I now feel like I have a fighting chance...and let me tell you I'm going to fight like hell.  Cause after my next big surgery my sisters have told me they will get me an even bigger tiara!

Long Road Ahead

After being laid off in December of 2008 I decided to make a career change and go into nursing, something I have wanted to do for years.  I was accepted into a program and after a grueling year graduated and passed the “Nursing Boards” to officially become a Licensed Practical Nurse in August of 2010.  I was extremely excited for a new chapter in my life to begin with my new career as a nurse.  I had recently accepted a position at my dream job to provide Hospice and Palliative Care; however it appears that my next chapter is going to be as a patient. 

I was diagnosed with Gastric Cancer on December 29th.  The past week and a half have been head-spinning to say the least.  As of this moment the plan is to treat it very aggressively, which I will be doing at MGH. I won't bore you with all of the details now (but I might later so consider yourself warned), but the next week and a half are going to be crazy.

 

I am so very grateful for the people I have in my life and I know it will be a huge factor in getting me and my family though the next few months.  I’ve always considered myself a pretty tough cookie and rest assured I’m going to put up a good fight.  I truly believe in the power of positive thinking and that laughter is the best medicine.  I know that I’m in the best position I can be because I am so fortunate to be surrounded by an amazingly wonderful family, truly remarkable friends, and great neighbors.

I will do my best to keep everyone updated as to what is going on.  I’ve already realized that trying to call everyone to keep current is tremendously draining.  Between FB, Gmail, etc. it was getting to be a bit much.  My hopes are that with this blog I’ll have one central location to be able to keep you updated.  To be quite honest, I think that being able to write my thoughts out will also be very therapeutic for me. 

For now please know that me and my boys appreciate all of the love and support we are receiving.

Hugs and Kisses,

Barbara