I haven't posted in awhile. Things are good. Had some bad days, and then had some really good days. Overall, most of my tomorrows have been wonderful.
My next round of chemo is just around the corner. Did those two weeks fly by for everyone else? I am amazed at how fast those two weeks went. All I can hope is that the four months of chemo I have to do will go that fast as well! I mean... wasn't it just Christmas??? It is almost March! I am going to have to start planning a #2 birthday soon... I can't believe it. Anyway...I am just in awe of how fast the two weeks went for me.
I have been enjoying my non-chemo pump days and my non-chemo sick days (which is why I haven't been posting). Along with that I have been drinking all the cold stuff I can possibly tolerate, because I know that when I start on the pump again Tuesday it is bye bye cold drinks and food. :( This wouldn't be too terrible, except the last time I got so sick after the pump, all I really wanted was something nice and cold to drink, and had to settle for some warm water. This is the wierdest side effect ever. When you eat or drink (especially drink) something cold, it shocks your throat and gives the sensation that it is swelling shut. It is so wierd. I was fortunate enough to not have it last too long (about a week), which gave me one good week of being able to drink/eat cold stuff. Now I'm kind of dreading that part of the chemo. I haven't really experienced much of the neuropathy my oncologist said I should be expecting. I did wake up one night with the tips of two of my fingers numb and tingling... I wondered if I slept on my fingers wrong...how stupid is that??? I guess I either thought that because I was still half asleep or maybe I could just blame it on chemobrain? For the most part my hands and feet have remained unscathed.
Today is 5 weeks since my surgery. I can't believe it. Time just keeps on flying by. Before I know it I will be getting ready for my next big surgery. I look forward to it just as much as I am scared about it. My first surgery I didn't even have time to think about it...it just happened. This time, I know what to expect and all the things to be concerned about. Yikes. Good thing I have some time to mentally prepare myself.
Tuesday will be chemo treatment number 2. My husband is going with me. He is the designated photographer (I know how much you all love the photographs). My mom is then planning on coming down for my "sick days". She will be a huge help. I am going into chemo treatment number 2 with some extra special medications (thanks to Zofran and Ativan) on my side to kick it's arse this time. There won't even be a fight...I will win.
Until Tuesday...
Enjoy the rest of your Sunday and smile often!
~I smiled today when I got the approval from my husband to get a new dining room table (that he doesn't know I already purchased :)) PHEW!!! :)
~I smiled today when I actually got out my hot glue gun and fixed some of Charly's barretts...not sure why...she doesn't wear them! Oh yeah...I can be crafty!
~I smiled today because I had a good weekend!!! I got to go to Kansas City for the day and spend time with my family!
~I smiled today because it isn't snowing or raining...YET! :)
~I smiled today because I have 2 days left before chemo!!! I'm going to enjoy them.
Today has been a good day...tomorrow will be even better!!!
Sunday, February 27, 2011
Wednesday, February 23, 2011
the bag...
I'm not going to post pictures of it, but I am going to talk about it.
Since the moment I woke up from surgery, I have had a bag attached to me. Yeah, I know...nasty. What can I say??? I begged the doctor not to give me one. He didn't listen. He also didn't warn me about what I would truely be getting.
I am a nurse by profession. I have taken care of ostomy patients. I never dreamed I would have one. I never imagined how upsetting getting one truely was. Like I have mentioned before... I am different because of this journey. I hurt for people that have ostomies. They SUCK! (I almost wrote they STINK... but you would have laughed)
It took me having a miscarriage to truely hurt for those that miscarry, and it took me getting an ostomy to truely hurt for those that have them. Yes, I know... I have to learn everything the hard way. These life lessons...wow they are hard!
I decided to write about my colostomy today because I came home with such a sense of relief today. I made it through an entire 8 hour class without my colostomy making noise. Laugh if you want. This dang thing has a mind of its own. It loves to make noises and function when it shouldn't.
I am lucky enough that my colostomy is temporary. I mean, I would be devastated if I had a poop bag stuck to me for the rest of my life. I have had this thing for over 4 weeks now, and I still hate it. I hate it just as much as I did the day I got it.
My surgeon told me I would be getting rid of this poop bag in 8-12 weeks. It looks like it will probably be more like 5 months. (sad face) I will have to do the 4 rounds of chemo (4 months), then take 1 month off the chemo before my surgery. This will allow for me to heal properly. I guess on a positive note... I have something to look forward to! :) Kind of a light at the end of the tunnel.
Well... here's to today...to not farting and inflating the bag!
Today was a good day...tomorrow will be even better.
Since the moment I woke up from surgery, I have had a bag attached to me. Yeah, I know...nasty. What can I say??? I begged the doctor not to give me one. He didn't listen. He also didn't warn me about what I would truely be getting.
I am a nurse by profession. I have taken care of ostomy patients. I never dreamed I would have one. I never imagined how upsetting getting one truely was. Like I have mentioned before... I am different because of this journey. I hurt for people that have ostomies. They SUCK! (I almost wrote they STINK... but you would have laughed)
It took me having a miscarriage to truely hurt for those that miscarry, and it took me getting an ostomy to truely hurt for those that have them. Yes, I know... I have to learn everything the hard way. These life lessons...wow they are hard!
I decided to write about my colostomy today because I came home with such a sense of relief today. I made it through an entire 8 hour class without my colostomy making noise. Laugh if you want. This dang thing has a mind of its own. It loves to make noises and function when it shouldn't.
I am lucky enough that my colostomy is temporary. I mean, I would be devastated if I had a poop bag stuck to me for the rest of my life. I have had this thing for over 4 weeks now, and I still hate it. I hate it just as much as I did the day I got it.
My surgeon told me I would be getting rid of this poop bag in 8-12 weeks. It looks like it will probably be more like 5 months. (sad face) I will have to do the 4 rounds of chemo (4 months), then take 1 month off the chemo before my surgery. This will allow for me to heal properly. I guess on a positive note... I have something to look forward to! :) Kind of a light at the end of the tunnel.
Well... here's to today...to not farting and inflating the bag!
Today was a good day...tomorrow will be even better.
Monday, February 21, 2011
4 weeks...
It's been 4 weeks since this has happened...it definitely has not sunk in yet. I have a wound on my abdomen that is healed. I have a wound on my chest that is healed. I have a wound in my heart that has not.
I have survived my first round of chemo. I think back to how I first even heard the word cancer during this entire experience.
It was the night I was in the ER. Around 2 am when the surgeon finally got to the hospital. (Sorry Dr. T. for not letting you get a full night of sleep!) He mentioned the "C" word to me before surgery. I remember he told me that this obstruction could be one of 3 things: cancer, crohns disease, or ulcerative colitis. I remember saying to Andrew, "I hope it is cancer, so they can cut it out and I would be done with it...and not have to live my whole life in pain or dealing with the other two." I think at the time I was more concerned with the fact that I was going to have to wake up with a colostomy bag. Little did I know that the colostomy bag would be just a smidgeon of what I was going to have to deal with. Little did I know, that it WAS cancer and that it was going to be a little bit of a fight till I was back on my feet and feeling normal again. (By the way, I am back on my feet, just not back to the normal part yet!)
So...After the surgery I remember hearing about a "mass", but that it looked "different" and nobody really said anything about cancer. That is, until I got a phone call on the 3rd day. My family doctor, Dr. L, (remember, she is no longer employed by me) called me on the phone and her exact words were, "Jen, I wanted to be the first to let you know that the results of your mass came back, and it is Cancer." How nice of her, huh?! To tell me this great news. To tell it to me...OVER THE PHONE! It wasn't long after I got that call, that my wonderful surgeon walked in the room to tell me the news (in a much more professional and compassionate manner), and was shocked to find out I had already heard it.
So, here I sit, 4 weeks later, still trying to comprehend what was told to me over the phone that day. Still trying to make sense of all this. Still wondering "WHY" and hoping I can just wake up and it has all been a dream. I really want my life back to the way it was. I really want to be me again. I know I can get through my chemo. I know it won't be easy. I know I will be so proud of myself in the end. I know that after my second surgery, things will start to look up for me. It is just a matter of getting there. This is going to be one tough journey. Ths has already been one tough journey. This is going to define me. I will be stronger for this. I will be a better wife for this. I will be a better mom for this. I will be a better daughter, sister, aunt, cousin, nurse, friend, neighbor...YOU NAME IT! I can't wait for the time I get to write: So, here I sit, 1 year later...LIFE IS GREAT!
Today was a good day...tomorrow will be even better!
I have survived my first round of chemo. I think back to how I first even heard the word cancer during this entire experience.
It was the night I was in the ER. Around 2 am when the surgeon finally got to the hospital. (Sorry Dr. T. for not letting you get a full night of sleep!) He mentioned the "C" word to me before surgery. I remember he told me that this obstruction could be one of 3 things: cancer, crohns disease, or ulcerative colitis. I remember saying to Andrew, "I hope it is cancer, so they can cut it out and I would be done with it...and not have to live my whole life in pain or dealing with the other two." I think at the time I was more concerned with the fact that I was going to have to wake up with a colostomy bag. Little did I know that the colostomy bag would be just a smidgeon of what I was going to have to deal with. Little did I know, that it WAS cancer and that it was going to be a little bit of a fight till I was back on my feet and feeling normal again. (By the way, I am back on my feet, just not back to the normal part yet!)
So...After the surgery I remember hearing about a "mass", but that it looked "different" and nobody really said anything about cancer. That is, until I got a phone call on the 3rd day. My family doctor, Dr. L, (remember, she is no longer employed by me) called me on the phone and her exact words were, "Jen, I wanted to be the first to let you know that the results of your mass came back, and it is Cancer." How nice of her, huh?! To tell me this great news. To tell it to me...OVER THE PHONE! It wasn't long after I got that call, that my wonderful surgeon walked in the room to tell me the news (in a much more professional and compassionate manner), and was shocked to find out I had already heard it.
So, here I sit, 4 weeks later, still trying to comprehend what was told to me over the phone that day. Still trying to make sense of all this. Still wondering "WHY" and hoping I can just wake up and it has all been a dream. I really want my life back to the way it was. I really want to be me again. I know I can get through my chemo. I know it won't be easy. I know I will be so proud of myself in the end. I know that after my second surgery, things will start to look up for me. It is just a matter of getting there. This is going to be one tough journey. Ths has already been one tough journey. This is going to define me. I will be stronger for this. I will be a better wife for this. I will be a better mom for this. I will be a better daughter, sister, aunt, cousin, nurse, friend, neighbor...YOU NAME IT! I can't wait for the time I get to write: So, here I sit, 1 year later...LIFE IS GREAT!
Today was a good day...tomorrow will be even better!
Sunday, February 20, 2011
more than a meal...
When someone brings over a meal for you when you are ill, it is more than a meal! Tonight we had a pleasant suprise and got a meal delivered to the house! This means I get to spend more time with my family, and less time using energy to make something. This means I can actually sit at the table with them and eat and not lay on the couch because I was too tired. I have to remind myself that I am still recovering from major surgery AND on chemo now. Doing things like I use to do, wear me down...BIG TIME. The chemo I took stays in my system 14 days... just enough time till it is time to get more. I blame it on the chemo.
Today was a good day. I felt good. I had a visit from my older brother, who has been so caring and concerned about me since this started. I have developed a new relationship with him. We talk, we cry, we laugh... it is good. It was great to see him today and spend some time with him, showing off my baby.
~I smiled today because I felt REALLY good.
~I smiled today because I got a meal delivered to the house and it was delicious!!! Thank you friend!
~I smiled today because I got to show off my baby to my brother and she made us laugh the entire time.
Today was a great day, and I can't wait for tomorrow...it will be even better!
Today was a good day. I felt good. I had a visit from my older brother, who has been so caring and concerned about me since this started. I have developed a new relationship with him. We talk, we cry, we laugh... it is good. It was great to see him today and spend some time with him, showing off my baby.
~I smiled today because I felt REALLY good.
~I smiled today because I got a meal delivered to the house and it was delicious!!! Thank you friend!
~I smiled today because I got to show off my baby to my brother and she made us laugh the entire time.
Today was a great day, and I can't wait for tomorrow...it will be even better!
Saturday, February 19, 2011
i am smarter now...
What did I learn in the last 24 hours? Day 3 and 4 after chemo are the worst! (at least this time) I did not expect that at all! I don't know why I didn't, but I didn't. I thought I was going to sail right through it, and that I could do this. There was a time yesterday around 6pm that I didn't think I could do this anymore. But...like always, today has been better than yesterday! I survived day 3 and 4. I kicked it's arse. It didn't feel like it at the time, but I did.
So, today was better. I got to actually leave the house and go to the mall to watch my baby play. I also got to make dinner for my family for the first time in what seems like ages (and eat with them at the table!!!). Big accomplishments for me! Things are looking up! Only 10 more days till I have to do this again....ugh! I'm going to enjoy the 10 days and go into the next chemo treatment with the knowledge I now have and fight even harder!
~I smiled today when my mom called me a bazillion times to check on me. Yep, she loves me!
~I smiled today when I got to watch a movie with my husband. (ok, I only watched 1/2 of it because I fell asleep, but it still made me smile!)
~I smiled today when I watched my baby playing and she came running over to me yelling "MOMMY, MOMMY".... I LOVE THAT!!!
~I smiled today because my older brother called to tell me he is coming to visit me tomorrow! That is awesome!
~I hate making dinner... or I should say I hated it. Today I smiled when I got to make dinner for my husband and baby. I love making dinner now!
Today was a good day, but tomorrow will be even better!!!
So, today was better. I got to actually leave the house and go to the mall to watch my baby play. I also got to make dinner for my family for the first time in what seems like ages (and eat with them at the table!!!). Big accomplishments for me! Things are looking up! Only 10 more days till I have to do this again....ugh! I'm going to enjoy the 10 days and go into the next chemo treatment with the knowledge I now have and fight even harder!
~I smiled today when my mom called me a bazillion times to check on me. Yep, she loves me!
~I smiled today when I got to watch a movie with my husband. (ok, I only watched 1/2 of it because I fell asleep, but it still made me smile!)
~I smiled today when I watched my baby playing and she came running over to me yelling "MOMMY, MOMMY".... I LOVE THAT!!!
~I smiled today because my older brother called to tell me he is coming to visit me tomorrow! That is awesome!
~I hate making dinner... or I should say I hated it. Today I smiled when I got to make dinner for my husband and baby. I love making dinner now!
Today was a good day, but tomorrow will be even better!!!
Friday, February 18, 2011
these are the moments i live for now...
This is where I have been planted all day, thanks to chemo side effects. I did feel well enough to do some hanging out with my baby while she drank her milk before bed.
that little devil
Chemo is evil. I found this out first hand. Yesterday after disconnecting the chemo, my mom (who has been here on and off for the last 3 1/2 weeks) left. I didn't blame here...I was feeling great, the weather was outstanding, and frankly, there is no place like home. Off she went. While I bid farewell to my mom, I began to welcome an unsuspecting guest.
I started to feel wierd. I wouldn't describe it as sick (yet), but something was definitely unusual about this feeling.
I kept telling myself...I couldn't be sick from the chemo...I had been doused in chemicals on Tuesday and for the last 46 hours this chemo has been infusing into my system...I wasn't sick then...why now?
The day went on...
Oh, around 4 I went to pick up my daughter, I might add this was the first time I have done it by myself since January 23rd. It felt good. I didn't.
We came home. I called my husband, who I had begged to go to urgent care to get something for his sinus infection. He did. I wished I hadn't begged him to go. I was down right SICK.
At one point my daughter was playing in her room, I was in the hallway bathroom with my head inside two grocery sacks (yes I have learned you need to double bag)...she came running out of her room in to see me and I told her to go back to her room and play and I would be there in a minute. She started to go back and was crying. She does this when she thinks she is in trouble. She wasn't. I was!
Finally Andrew came home. I spent the last part of the day sitting in the recliner or laying on the couch with my grocery sacks, water (that I was barely able to sip), and of course dealing with diarrhea. (Diarrhea and Colostomy bags are a story in itself...maybe for another post)
I was just ill!
So here it is a new day... tomorrow is behind me. I am feeling very warn out, but at least I don't have my head in a grocery sack. I wanted to try to make it to work today, but I don't think that is going to happen. I need to take care of myself. I can't get too exhausted.
The sun is shining. It is BEAUTIFUL outside, and it is FRIDAY!!!! Who wouldn't have a smile on their face about that.
I smiled today when I had 4 missed calls from my mom because I was sleeping on my phone and she was frantically trying to reach me. (I only smiled because she cared!)
I smiled today when I woke up and didn't feel sick! What a relief.
I smile today because it is a new day and one day closer to being done with this!
I smiled today when I got this from a friend:
Today is going to be a good day, but tomorrow will be even better. (I bet ya! :))
I started to feel wierd. I wouldn't describe it as sick (yet), but something was definitely unusual about this feeling.
I kept telling myself...I couldn't be sick from the chemo...I had been doused in chemicals on Tuesday and for the last 46 hours this chemo has been infusing into my system...I wasn't sick then...why now?
The day went on...
Oh, around 4 I went to pick up my daughter, I might add this was the first time I have done it by myself since January 23rd. It felt good. I didn't.
We came home. I called my husband, who I had begged to go to urgent care to get something for his sinus infection. He did. I wished I hadn't begged him to go. I was down right SICK.
At one point my daughter was playing in her room, I was in the hallway bathroom with my head inside two grocery sacks (yes I have learned you need to double bag)...she came running out of her room in to see me and I told her to go back to her room and play and I would be there in a minute. She started to go back and was crying. She does this when she thinks she is in trouble. She wasn't. I was!
Finally Andrew came home. I spent the last part of the day sitting in the recliner or laying on the couch with my grocery sacks, water (that I was barely able to sip), and of course dealing with diarrhea. (Diarrhea and Colostomy bags are a story in itself...maybe for another post)
I was just ill!
So here it is a new day... tomorrow is behind me. I am feeling very warn out, but at least I don't have my head in a grocery sack. I wanted to try to make it to work today, but I don't think that is going to happen. I need to take care of myself. I can't get too exhausted.
The sun is shining. It is BEAUTIFUL outside, and it is FRIDAY!!!! Who wouldn't have a smile on their face about that.
I smiled today when I had 4 missed calls from my mom because I was sleeping on my phone and she was frantically trying to reach me. (I only smiled because she cared!)
I smiled today when I woke up and didn't feel sick! What a relief.
I smile today because it is a new day and one day closer to being done with this!
I smiled today when I got this from a friend:
Today is going to be a good day, but tomorrow will be even better. (I bet ya! :))
Thursday, February 17, 2011
1 down...
One Chemo treatment down! I disconnected at noon today. I was a slave to that stupid pump for 46 hours. It was such a pain to walk around carrying that stupid thing, sleeping with that stupid thing, and of course...NOT BATHING! So...here are the photos of my disconnecting experience. I would like to say it was first thing in the morning, which is why I look like I just got out of bed, but it was noon, and give me a break...I haven't showered in 46 hours!
Pump is at ZERO!!! Time to disconnect!
Flush with saline:
Flush with Heparin:
Loosening the tape:
Pulling the needle out:
The Huber needle...
So...for the first chemo treatment, I did well! I only had to take 2 anti-nausea medications, could definitely tell by the afternoon/evening that I had over done it, but that was all my fault. I feel great though! I went into Chemo with a slight cold, and came out 46 hours later with a raging cold/sinus infection and 2 bloody noses (not caused by the chemo). My favorite oncology nurse practitioner called in a Z-Pack for me. I will shortly be back on the road to feeling great!
The weather outside is wonderful, and I am very much looking forward to the weekend.
Here is to the first chemo treatment down, and hopefully only 7 more to go!!!
~Today I smiled when I got to lay in bed with my daughter and watch Disney!
~Today I smiled when I called the nurse practitioner and she quickly called in a prescription for me (SO EASY!!!).
~Today I smiled when I stepped outside and the weather was GORGEOUS!!!
~Today I smiled because I disconnected my first chemo treatment and can finally be free and take a bath!
Today will be a great day, but tomorrow will be even better!
Pump is at ZERO!!! Time to disconnect!
Flush with saline:
Flush with Heparin:
Loosening the tape:
Pulling the needle out:
The Huber needle...
So...for the first chemo treatment, I did well! I only had to take 2 anti-nausea medications, could definitely tell by the afternoon/evening that I had over done it, but that was all my fault. I feel great though! I went into Chemo with a slight cold, and came out 46 hours later with a raging cold/sinus infection and 2 bloody noses (not caused by the chemo). My favorite oncology nurse practitioner called in a Z-Pack for me. I will shortly be back on the road to feeling great!
The weather outside is wonderful, and I am very much looking forward to the weekend.
Here is to the first chemo treatment down, and hopefully only 7 more to go!!!
~Today I smiled when I got to lay in bed with my daughter and watch Disney!
~Today I smiled when I called the nurse practitioner and she quickly called in a prescription for me (SO EASY!!!).
~Today I smiled when I stepped outside and the weather was GORGEOUS!!!
~Today I smiled because I disconnected my first chemo treatment and can finally be free and take a bath!
Today will be a great day, but tomorrow will be even better!
Wednesday, February 16, 2011
wonderful news...if you ask me!
I've been dying to share some good news!
We (my mom and I) went to my cancer center yesterday for my appointment. I was expecting to get there around 9:45 and leave by noon. This did not happen. We did not walk out of the cancer center till about 2:30. A LONG DAY.
After getting there and getting my mediport accessed (which was a big hurdle for me...I was nervous about this), I went to meet with my doctor. I love my doctor. Dr. R is great. He reminds me of Walter Matthau. He never gets very excited. He is very monotoned and about 70 years old. Just a sweet old grandpa type that you just feel comforted by. So imagine him like this while I tell the story...
We were seated in a room to meet with him. Test results were to be given...yeah, the test that was going to cost me 3200.00, but luckily my favorite oncologist Dr. R was going to take care of that with the insurance company for me, telling me that I WOULD NOT have to pay for it (I didn't mention that...but this in itself is great news too).
So Dr. R. walks in the room and says HI to us and goes over to the sink to wash his hands. While he is washing up, he says (in his monotoned voice), "well...this is very complicated. I'm not sure how to tell you this." (my mom and I look at eachother and kinda start to panic) He proceeds: "let me go get the print out on the test result to go over it with you." He leaves the room... we start to freak! I'm pretty sure at this point we were convince I had some freaky rapid growing cancer and would parish in the near future. LUCKILY WE WERE WRONG!
This test is to determine the reoccurance rate of my cancer. The score to be given is a number from 1-100. The lower the number the better your chance for NO reoccurance.
He walks back in the room. Pauses. (for quite some time) Then says, "well, this is very complicated..." I'm like GET TO THE POINT BUDDY!!! My doctor that I love so much is taking his sweet time to tell me some very awful news... Well, to put this story in my tone and give you the report in a reasonable time, because If I gave it to you in Dr. R's time it would take forever. Here is what I found out:
1. My tumor/mass that was removed is very odd!!! I would say odd in a good way. Dr. R would not agree. Dr. R. informed us that the actual tumor is a stage 1!!!! That is awesome news for me. Dr. R would not agree. The reason it was classified a stage 2 is that once the tumor perforates the bowel or obstructs it (which mine did) it is now considered a stage 2. But the actual tumor itself is a stage 1.
2. The score on my test result was a 31. (I would say say good news, Dr. R would not agree) The reoccurance rate WITHOUT taking chemotherapy after 3 years is 16%. (also not bad...and again, Dr. R would not agree!)
3. Dr. R told me that he could not argue with me if I decided not to take the Chemo since it is not the recommended treatment for a stage 1 cancer, but that since I was willing (I didn't know I had a choice till yesterday) to take the chemo it would just be an added insurance to me in the future for reoccurance.
4. Dr. R is consulting with a specialist at the Mayo clinic to discuss my case. At this point, Dr. R is recommending only to do 4 months of chemo! (AMAZING news...I think Dr. R agreed with me) I am hoping after he talks to the specialist that the amount of chemo is less than that!
So... to me, all this was great news. Of course to Dr. R who never gets excited, didn't agree with me...stating you just never know. Whatever that means. I think he just doesn't like to agree with me!
So, as it turns out... I may only have to do Chemo for 4 months, give myself 1 month to recover from the Chemo and then be able to do my reversal surgery, which will be another journey in itself.
Dr. T my surgeon has already informed me that the next surgery will be almost twice as long as the first, so therefore it will be about 6 hours. He said it will be more complicated, which is why he will have another surgeon in there with him, because his exact words were "taking you apart is the easy part, putting you back together is much more difficult"...aghhhhhh Thanks Dr. T!!! Along with that, my scar will have 2 more inches added to it, to make it THE LARGEST SCAR IN THE WORLD... ok, not really, but if it were on you...you would think that too! :) But, on a positive note... I can get rid of that dang colostomy! Did I mention I hated that???
Chemo wasn't too bad. I thought it would be worse. At this point I have definitely had some strange side effects... mostly related to the cold. I can not drink or eat anything cold while on the chemo. I found that out last night first hand. I dipped a fry in ketchup that was cold and my throat started to swell shut. At least it felt like that. I started to choke, my eyes watered and I almost panicked till I remember that the chemo nurse told me when that happens to just take some breaths and it would go away. Along with that, drinking any water with a hint of cold to it, does the same thing. I am hoping once the pump is disconnected this side effect will go away! I also dished out some ice cream for my mom and my husband, and when i touched it with my finger to get it off the ice cream scoop, it felt like I had an electric shock! WIERD. I have only taken 2 doses of antinausea medicine...I am doing ok. I can tell I get worn out quickly, and just need to sit for a bit. But really, overall this hasn't been horrible. I am hoping it stays this way! Wouldn't that be wonderful. Remember, I have an almost 2 year old to keep up with!!!
Thank you all for your continued thoughts and prayers. They keep me positive and things are looking better already!
~Today I smiled when I got to go to lunch with my mom and my friend Kim.
~Today I smiled because I got to get my baby up this morning and dressed and took her to daycare for the first time!
~Today I smiled because the sun is shining and it is SOOOOOO nice out.
Today has been a good day...tomorrow will be even better.
We (my mom and I) went to my cancer center yesterday for my appointment. I was expecting to get there around 9:45 and leave by noon. This did not happen. We did not walk out of the cancer center till about 2:30. A LONG DAY.
After getting there and getting my mediport accessed (which was a big hurdle for me...I was nervous about this), I went to meet with my doctor. I love my doctor. Dr. R is great. He reminds me of Walter Matthau. He never gets very excited. He is very monotoned and about 70 years old. Just a sweet old grandpa type that you just feel comforted by. So imagine him like this while I tell the story...
We were seated in a room to meet with him. Test results were to be given...yeah, the test that was going to cost me 3200.00, but luckily my favorite oncologist Dr. R was going to take care of that with the insurance company for me, telling me that I WOULD NOT have to pay for it (I didn't mention that...but this in itself is great news too).
So Dr. R. walks in the room and says HI to us and goes over to the sink to wash his hands. While he is washing up, he says (in his monotoned voice), "well...this is very complicated. I'm not sure how to tell you this." (my mom and I look at eachother and kinda start to panic) He proceeds: "let me go get the print out on the test result to go over it with you." He leaves the room... we start to freak! I'm pretty sure at this point we were convince I had some freaky rapid growing cancer and would parish in the near future. LUCKILY WE WERE WRONG!
This test is to determine the reoccurance rate of my cancer. The score to be given is a number from 1-100. The lower the number the better your chance for NO reoccurance.
He walks back in the room. Pauses. (for quite some time) Then says, "well, this is very complicated..." I'm like GET TO THE POINT BUDDY!!! My doctor that I love so much is taking his sweet time to tell me some very awful news... Well, to put this story in my tone and give you the report in a reasonable time, because If I gave it to you in Dr. R's time it would take forever. Here is what I found out:
1. My tumor/mass that was removed is very odd!!! I would say odd in a good way. Dr. R would not agree. Dr. R. informed us that the actual tumor is a stage 1!!!! That is awesome news for me. Dr. R would not agree. The reason it was classified a stage 2 is that once the tumor perforates the bowel or obstructs it (which mine did) it is now considered a stage 2. But the actual tumor itself is a stage 1.
2. The score on my test result was a 31. (I would say say good news, Dr. R would not agree) The reoccurance rate WITHOUT taking chemotherapy after 3 years is 16%. (also not bad...and again, Dr. R would not agree!)
3. Dr. R told me that he could not argue with me if I decided not to take the Chemo since it is not the recommended treatment for a stage 1 cancer, but that since I was willing (I didn't know I had a choice till yesterday) to take the chemo it would just be an added insurance to me in the future for reoccurance.
4. Dr. R is consulting with a specialist at the Mayo clinic to discuss my case. At this point, Dr. R is recommending only to do 4 months of chemo! (AMAZING news...I think Dr. R agreed with me) I am hoping after he talks to the specialist that the amount of chemo is less than that!
So... to me, all this was great news. Of course to Dr. R who never gets excited, didn't agree with me...stating you just never know. Whatever that means. I think he just doesn't like to agree with me!
So, as it turns out... I may only have to do Chemo for 4 months, give myself 1 month to recover from the Chemo and then be able to do my reversal surgery, which will be another journey in itself.
Dr. T my surgeon has already informed me that the next surgery will be almost twice as long as the first, so therefore it will be about 6 hours. He said it will be more complicated, which is why he will have another surgeon in there with him, because his exact words were "taking you apart is the easy part, putting you back together is much more difficult"...aghhhhhh Thanks Dr. T!!! Along with that, my scar will have 2 more inches added to it, to make it THE LARGEST SCAR IN THE WORLD... ok, not really, but if it were on you...you would think that too! :) But, on a positive note... I can get rid of that dang colostomy! Did I mention I hated that???
Chemo wasn't too bad. I thought it would be worse. At this point I have definitely had some strange side effects... mostly related to the cold. I can not drink or eat anything cold while on the chemo. I found that out last night first hand. I dipped a fry in ketchup that was cold and my throat started to swell shut. At least it felt like that. I started to choke, my eyes watered and I almost panicked till I remember that the chemo nurse told me when that happens to just take some breaths and it would go away. Along with that, drinking any water with a hint of cold to it, does the same thing. I am hoping once the pump is disconnected this side effect will go away! I also dished out some ice cream for my mom and my husband, and when i touched it with my finger to get it off the ice cream scoop, it felt like I had an electric shock! WIERD. I have only taken 2 doses of antinausea medicine...I am doing ok. I can tell I get worn out quickly, and just need to sit for a bit. But really, overall this hasn't been horrible. I am hoping it stays this way! Wouldn't that be wonderful. Remember, I have an almost 2 year old to keep up with!!!
Thank you all for your continued thoughts and prayers. They keep me positive and things are looking better already!
~Today I smiled when I got to go to lunch with my mom and my friend Kim.
~Today I smiled because I got to get my baby up this morning and dressed and took her to daycare for the first time!
~Today I smiled because the sun is shining and it is SOOOOOO nice out.
Today has been a good day...tomorrow will be even better.
Tuesday, February 15, 2011
This is it...
drum roll please.....It's CHEMO time!!!
In T minus 1 hour I will be sitting in the cancer center getting labs drawn, get premedicated and chemo started...
I am scared! I have to admit. I do not want to do this.
I am thankful that I have my mom coming down to go with me. I need the company. I need the comfort. I am 32 years old and I need my mom more than anything! I will update this after I am done... say a prayer for me! :)
My Chemo Experience:
accessing my port...
waiting for the infusion to get hooked up...
one of my many trips to the restroom...cruising the infusion center...
my chemo pump that will be attached to me for 46 hours every 2 weeks for months...
and the pump again...
I would have to say...I KICKED TODAY'S ARSE...BIG TIME!!! I was nervous...but I conquered it. Ok, so the ativan helped a little... but It was all me. I had to do it, and I did! I am on my way...well on my way!
It was a big comfort knowing that my mom was sitting beside me the entire time. She is comfort to me. She encourages me. She makes me laugh. She is wonderful.
I did get great news today after meeting with my doctor, and I will write about it tomorrow. I can't wait to share the news!
Today I smiled when the nurse told me I was full of pep and spunk! (By the way... she has that right on!!!)
Today I smiled because I felt good!!!
Today I smiled when my mom got to my house bearing gifts for my entire family...a candle and slippers for me, an outfit, apron and purse with goodies for Charly, and a box of coffee and biscottis for Andrew...I am starting to love gifts, and she always brings the best.
Today I smiled because I got a package in the mail from a friend of Andrew's family, and my friend as well, who sent me a homemade quilt to keep me warm and cozy while I sit and do chemo. HOW THOUGHTFUL IS THAT? HOW SWEET IS THAT? I FEEL SO LOVED.
Today was a good day (really it was), but tomorrow will be even better!!!
In T minus 1 hour I will be sitting in the cancer center getting labs drawn, get premedicated and chemo started...
I am scared! I have to admit. I do not want to do this.
I am thankful that I have my mom coming down to go with me. I need the company. I need the comfort. I am 32 years old and I need my mom more than anything! I will update this after I am done... say a prayer for me! :)
My Chemo Experience:
accessing my port...
waiting for the infusion to get hooked up...
one of my many trips to the restroom...cruising the infusion center...
my chemo pump that will be attached to me for 46 hours every 2 weeks for months...
and the pump again...
I would have to say...I KICKED TODAY'S ARSE...BIG TIME!!! I was nervous...but I conquered it. Ok, so the ativan helped a little... but It was all me. I had to do it, and I did! I am on my way...well on my way!
It was a big comfort knowing that my mom was sitting beside me the entire time. She is comfort to me. She encourages me. She makes me laugh. She is wonderful.
I did get great news today after meeting with my doctor, and I will write about it tomorrow. I can't wait to share the news!
Today I smiled when the nurse told me I was full of pep and spunk! (By the way... she has that right on!!!)
Today I smiled because I felt good!!!
Today I smiled when my mom got to my house bearing gifts for my entire family...a candle and slippers for me, an outfit, apron and purse with goodies for Charly, and a box of coffee and biscottis for Andrew...I am starting to love gifts, and she always brings the best.
Today I smiled because I got a package in the mail from a friend of Andrew's family, and my friend as well, who sent me a homemade quilt to keep me warm and cozy while I sit and do chemo. HOW THOUGHTFUL IS THAT? HOW SWEET IS THAT? I FEEL SO LOVED.
Today was a good day (really it was), but tomorrow will be even better!!!
Monday, February 14, 2011
Chemo preparation...
Can you really prepare yourself for Chemo? I mean... I am about to partake in some nasty chemicals being pumped into my body for 46 hours at a time, every two weeks for 6 months. Chemicals that are suppose to save my life, and chemicals that can do some serious damage. It wasn't very comforting in knowing that when Andrew and I went in to meet with the nurse practitioner for our "chemo education", the first question she asked me was if I had a wig yet. A WIG? Was she serious? Of course she was! I am not ready for this!
I was sitting in a room, in the cancer center, with my husband, surrounded by wigs, mirrors, hats and scarfs for a bald head. I am not ready for that. I do not want to be bald. I am not ready to sit in the infusion room surrounded by pumps and machines and OLD PEOPLE and embrace my experience with chemo. I have not had time to even imagine myself getting chemo. I can't imagine how it will feel to know that nasty chemicals are being pumped into my body. I can't imagine what they will do to me. I can only hope they do the job!
Here is to the next 6 months...I unbutton my shirt, expose my mediport and say "BRING IT"!!! I will embrace this. I will do this. I will CONQUER THIS!!! I have a life to live. I have a husband that loves me more than anything. I have a baby girl that is my life. I have friends and family that care and that are cheering me on and standing beside me constantly encouraging me. I am BLESSED!!!
I thank God for this experience. He has a plan. I don't know it yet, but he does. There will be something amazing coming from this experience. In my chemo preparation... I embrace it. I encourage it. I welcome it. I can do this!
~Today I smiled when I brought a smile to my neighbor's face by bringing her a Valentine.
~Today I smiled when my husband walked in the house with my baby girl in his arms.
~Today I smiled because I know I am loved, and that is such a great feeling.
~Today is Valentine's Day...I smile at that.
~Today I smiled because I had 4 followers...I love that people care enough to read this. If you are reading this, please sign in to be a follower. I would love to know who is supporting me.
Today was a good day...tomorrow will be even better!!! (Please say a prayer for me!)
I was sitting in a room, in the cancer center, with my husband, surrounded by wigs, mirrors, hats and scarfs for a bald head. I am not ready for that. I do not want to be bald. I am not ready to sit in the infusion room surrounded by pumps and machines and OLD PEOPLE and embrace my experience with chemo. I have not had time to even imagine myself getting chemo. I can't imagine how it will feel to know that nasty chemicals are being pumped into my body. I can't imagine what they will do to me. I can only hope they do the job!
Here is to the next 6 months...I unbutton my shirt, expose my mediport and say "BRING IT"!!! I will embrace this. I will do this. I will CONQUER THIS!!! I have a life to live. I have a husband that loves me more than anything. I have a baby girl that is my life. I have friends and family that care and that are cheering me on and standing beside me constantly encouraging me. I am BLESSED!!!
I thank God for this experience. He has a plan. I don't know it yet, but he does. There will be something amazing coming from this experience. In my chemo preparation... I embrace it. I encourage it. I welcome it. I can do this!
~Today I smiled when I brought a smile to my neighbor's face by bringing her a Valentine.
~Today I smiled when my husband walked in the house with my baby girl in his arms.
~Today I smiled because I know I am loved, and that is such a great feeling.
~Today is Valentine's Day...I smile at that.
~Today I smiled because I had 4 followers...I love that people care enough to read this. If you are reading this, please sign in to be a follower. I would love to know who is supporting me.
Today was a good day...tomorrow will be even better!!! (Please say a prayer for me!)
Sunday, February 13, 2011
3 weeks today...I am changed
It has been 3 weeks since my surgery. I had never had surgery before. I have taken care of patients that had surgery...and now I understand. I understand how they felt when someone walked in the room to try to help them, but they were scared to be touched...it hurt. I understand how scared they were. I understand how they felt when they were tired. I understand how they felt when they wanted to give up. I understand how they felt when something so simple has now become so hard. I understand how the one thing you want is something so simple. I understand how it is to get devastating news. I understand them. I am a patient.
It has been 3 weeks since my surgery. I have never been a performer in a circus, but I understand how they feel. I am a circus freak. I know what it feels like to have people stare. I look normal, but under it all, it is very much a disaster. I have walked into rooms and people have wanted to see things, to touch things, to tell me about things they have no idea. I understand what it feels like to be the freak. I am a circus freak.
It has been 3 weeks since my surgery. Life is harder. I have learned lessons. Hard lessons. I think about things differently now. It is sad that it has taken something so terrible to soften my heart. To understand things more clearly. To forgive people that don't know. I didn't know... I do now!
Today was a good day, but tomorrow will be even better.
It has been 3 weeks since my surgery. I have never been a performer in a circus, but I understand how they feel. I am a circus freak. I know what it feels like to have people stare. I look normal, but under it all, it is very much a disaster. I have walked into rooms and people have wanted to see things, to touch things, to tell me about things they have no idea. I understand what it feels like to be the freak. I am a circus freak.
It has been 3 weeks since my surgery. Life is harder. I have learned lessons. Hard lessons. I think about things differently now. It is sad that it has taken something so terrible to soften my heart. To understand things more clearly. To forgive people that don't know. I didn't know... I do now!
Today was a good day, but tomorrow will be even better.
the story of the mass discovery
This is how I ended up. On the evening of January 22, 2011, after 12 days of not pooping I did something about it. I had surgery and ended up like this. It wasn't planned surgery, and to tell you the truth, if I knew that this was going to be the outcome, I might not have done anything. But I did... and here is the story.
I had been to urgent care on January 13 after only 3 days of not pooping. I just knew something was wrong. In fact, when I met with the nurse (as well as the physician), I told them, "you are going to think I am crazy, but I think I have an obstruction". I got the run around about how I should keep trying the laxatives I was taking and Dr. H did order an x-ray. (results of the x-ray given to me over the phone by Dr. H: moderate amount of stool in the ascending colon) I listened to the doctor and spent that afternoon wondering why the laxatives I was taking were not working. I decided to step it up. Now, normally one of those teeny tiny little laxative pills is very decieving to me... they are actually a teeny tiny dynamite just waiting to cause hours of pain and suffering as well as an extended period of time on the pot... but this time... NOTHING! I continued to try and try and try...
The damage done: dulcolax pills (by the way, they do not give you gentle overnight relief), dulcolax suppositories, enemas, magnesium citrate (ok, only 3/4 of a bottle, but still!!!), senokot-s, MULTIPLE stool softeners, Miralax (oh, about 15 doses), mineral oil, karo syrup, metamucil, gas-x ( i was having severe gas pain), mcdonald's quarter pounder, pizza hut pizza, taco bell, little debbie oatmeal cream pies (always produced results before), coffee, hot tea, hot baths, a cigarette, colonic massage (seriously), prunes, fiber bars,...the list could go on.
I ended up calling urgent care back on January 18th. At this time it had been 8 days. Not too unheard of. But seriously... I knew something was not right. I asked for another x-ray, so that they would be able to compare. I needed some peace of mind... I needed to know that all the trouble and work that I was doing was paying off. I needed to know that my bowels were moving. I was granted the x-ray. The results given to me over the phone: moderate amount of stool in the colon.
Despite me practically begging (and getting a little short), they did not compare the x-rays, and once again, seemed to blow me off.
I had made an appointment with my family Doctor (Dr. L), who at this time is unemployed by me! I saw her on January 21, 2011.
This appointment went well (at least I thougth it was going well). She ordered another x-ray and did some labs. While I was running around getting this stuff done, all I was thinking to myself, was she would now realize there was a problem and fix me. Sadly, I was mistaken. I got the x-ray (which again she did not compare, even with me begging her), and I got the lab work done, and a lecture on how I needed to eat more fiber. WHAT? Was this a joke? I had eaten enough fiber and taken enough medications to be quite the bomb scare! I left there devastated. At this time... It had been 12 days since my last production...something was wrong.
Saturday, January 22nd around 6pm...we were at El Jimadors...one of my favorite places to eat. It is quick, it is good, and I just like it. I didn't like it this night. I wasn't feeling well, I mean come on... I hadn't pooped in 12 days. All I could think of while I sat there was that I wanted to run by walmart on the way home to purchase the entire stock of laxative supplies and take them all when I got home...this did not happen. I started to feel horrible and instead insisted on going home so I could lay down.
Back at the house: I was laying on the couch... my almost 2 year old jumping on my stomach while I was reading her books...I decided to call my friend up whose husband did me a favor and looked at my xrays...he told me to get to the ER.
I called my neighbor right away to see if she would come stay with my baby, who I had just laid down in bed. She was out to dinner with a friend. I called her daughter. She came instead. THANK GOD!
I picked up my crying baby, hugged her, and kissed on her and told her everything would be ok. Little did I know, this is how I would end up:
EMERGENCY EXPLORATORY SURGERY done sometime the morning of the 23rd. COLOSTOMY!!! APPENDIX OUT!!! MASS FOUND!!!
Not my idea of a good time.
The plus side:
I did not die. My daughter jumping on my abdomen could have killed me.
I now have a cool scar?
I save money on toilet paper...although these portable toilets attached to my stomach ain't cheap!
Did I mention I did not die...:)
Today was a good day, but tomorrow will be even better!
I had been to urgent care on January 13 after only 3 days of not pooping. I just knew something was wrong. In fact, when I met with the nurse (as well as the physician), I told them, "you are going to think I am crazy, but I think I have an obstruction". I got the run around about how I should keep trying the laxatives I was taking and Dr. H did order an x-ray. (results of the x-ray given to me over the phone by Dr. H: moderate amount of stool in the ascending colon) I listened to the doctor and spent that afternoon wondering why the laxatives I was taking were not working. I decided to step it up. Now, normally one of those teeny tiny little laxative pills is very decieving to me... they are actually a teeny tiny dynamite just waiting to cause hours of pain and suffering as well as an extended period of time on the pot... but this time... NOTHING! I continued to try and try and try...
The damage done: dulcolax pills (by the way, they do not give you gentle overnight relief), dulcolax suppositories, enemas, magnesium citrate (ok, only 3/4 of a bottle, but still!!!), senokot-s, MULTIPLE stool softeners, Miralax (oh, about 15 doses), mineral oil, karo syrup, metamucil, gas-x ( i was having severe gas pain), mcdonald's quarter pounder, pizza hut pizza, taco bell, little debbie oatmeal cream pies (always produced results before), coffee, hot tea, hot baths, a cigarette, colonic massage (seriously), prunes, fiber bars,...the list could go on.
I ended up calling urgent care back on January 18th. At this time it had been 8 days. Not too unheard of. But seriously... I knew something was not right. I asked for another x-ray, so that they would be able to compare. I needed some peace of mind... I needed to know that all the trouble and work that I was doing was paying off. I needed to know that my bowels were moving. I was granted the x-ray. The results given to me over the phone: moderate amount of stool in the colon.
Despite me practically begging (and getting a little short), they did not compare the x-rays, and once again, seemed to blow me off.
I had made an appointment with my family Doctor (Dr. L), who at this time is unemployed by me! I saw her on January 21, 2011.
This appointment went well (at least I thougth it was going well). She ordered another x-ray and did some labs. While I was running around getting this stuff done, all I was thinking to myself, was she would now realize there was a problem and fix me. Sadly, I was mistaken. I got the x-ray (which again she did not compare, even with me begging her), and I got the lab work done, and a lecture on how I needed to eat more fiber. WHAT? Was this a joke? I had eaten enough fiber and taken enough medications to be quite the bomb scare! I left there devastated. At this time... It had been 12 days since my last production...something was wrong.
Saturday, January 22nd around 6pm...we were at El Jimadors...one of my favorite places to eat. It is quick, it is good, and I just like it. I didn't like it this night. I wasn't feeling well, I mean come on... I hadn't pooped in 12 days. All I could think of while I sat there was that I wanted to run by walmart on the way home to purchase the entire stock of laxative supplies and take them all when I got home...this did not happen. I started to feel horrible and instead insisted on going home so I could lay down.
Back at the house: I was laying on the couch... my almost 2 year old jumping on my stomach while I was reading her books...I decided to call my friend up whose husband did me a favor and looked at my xrays...he told me to get to the ER.
I called my neighbor right away to see if she would come stay with my baby, who I had just laid down in bed. She was out to dinner with a friend. I called her daughter. She came instead. THANK GOD!
I picked up my crying baby, hugged her, and kissed on her and told her everything would be ok. Little did I know, this is how I would end up:
EMERGENCY EXPLORATORY SURGERY done sometime the morning of the 23rd. COLOSTOMY!!! APPENDIX OUT!!! MASS FOUND!!!
Not my idea of a good time.
The plus side:
I did not die. My daughter jumping on my abdomen could have killed me.
I now have a cool scar?
I save money on toilet paper...although these portable toilets attached to my stomach ain't cheap!
Did I mention I did not die...:)
Today was a good day, but tomorrow will be even better!
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