So I finished the book, 90 Minutes in Heaven" by Don Piper and Cecil Murphey. It really was very comforting to hear his experience of being in Heaven. The man suffered a great deal when he returned to Earth. He went through countless surgeries just to be back here on Earth with us when he would have much rather been in Heaven. I recommend it to anyone, just to read of his experience in Heaven was so intriguing.
My 3 and a half year old son has been talking about death a lot. I don't know if he over hears me sometimes or comes up with things on his own but he expressed to me the other day that he doesn't want to die. I talked to his counselor about this, "what am I supposed to tell him?" I asked her in desperation. Her recommendation was to reflect back so he knows I heard him and say "You seem really worried about dying. A lot of kids are worried about that too, but a person usually lives for a very long time until they are very old." She also told me to tell him (knowing we are a religious family) that he will be with Jesus when he dies in Heaven. I followed her advice as best I could and his come back was, "oh then I want to die so I can meet God." What do you say to that??
It was so timely that he came up with this after just reading this book. It is probably just the situation I am in, but he does make it seem so amazing that I find myself thinking I would like to go to heaven, There is no suffering there and you get to be with God.
Wednesday, January 7, 2015
Sunday, January 4, 2015
2 Corinthians 5:1-4
I am reading this book called 90 minutes in heaven. I haven't finished it yet so I will blog more about it when I do but I just read this passage that I had to share with you:
For we know that when this earthly tent we live in is taken down-- when we die and leave these bodies--we will have a home in heaven, an eternal body made for us by God himself and not by human hands. We grow weary in our present bodies, and we long for the day when we will put in our heavenly bodies like new clothing. For we will not be spirits without bodies, but we will put on new heavenly bodies. Our dying bodies make us groan and sigh, but it's not that we want to die and have no bodies at all. We want to slip into our new bodies so that these dying bodies will be swallowed up by everlasting life. 2 Corinthians 5:1-4
For we know that when this earthly tent we live in is taken down-- when we die and leave these bodies--we will have a home in heaven, an eternal body made for us by God himself and not by human hands. We grow weary in our present bodies, and we long for the day when we will put in our heavenly bodies like new clothing. For we will not be spirits without bodies, but we will put on new heavenly bodies. Our dying bodies make us groan and sigh, but it's not that we want to die and have no bodies at all. We want to slip into our new bodies so that these dying bodies will be swallowed up by everlasting life. 2 Corinthians 5:1-4
Friday, January 2, 2015
scan results from 12/30
The Dr just called, boy that was a test on patience, it was 6pm by the time she got around to calling. There was some growth on my liver, actually doubling in size of tumors, however the Dr referred to it as pseudo progression. She said that it could be because of infiltration of immune related cells. Basically the way I understand it is that there could be a sort of an inflamation of the tumors not necessarily growth. This trial allows for tumor growth because that can happen before the tumors shrink. She said that on other trials I would be kicked off with growth but because this is immunotherapy I will continue on trial. Also all my other tumors were stable.
I have developed blurry vision, my eyes are dilated I believe from the trial drug. I need to see the eye dr next week. I have been put on new drugs for my cramping and I think that is improving.
It wasn't the greatest of news, I really wanted to start celebrating, but we can do that next scan I guess? I don't feel sick from the tumors and my liver function was good last time so I am not overly concerned. I'm also back in the bed, so things are looking ok for now.
I have developed blurry vision, my eyes are dilated I believe from the trial drug. I need to see the eye dr next week. I have been put on new drugs for my cramping and I think that is improving.
It wasn't the greatest of news, I really wanted to start celebrating, but we can do that next scan I guess? I don't feel sick from the tumors and my liver function was good last time so I am not overly concerned. I'm also back in the bed, so things are looking ok for now.
Sunday, December 28, 2014
Tuesday scan and treatment
Tuesday will be such a long day for me, we need to leave before 7am to get up to Boston. I have a scan and then treatment. I won't get results of the scan until probably the 2nd as my dr is out of town. I am not too concerned with results, if it shows a little growth I will be surprised although it is expected with this kind of treatment.
I continue to get severe cramps early afternoon every day from the pills I take for the treatment. We haven't been able to find anything to relieve that yet. I get my week off starting next wed and I look forward to that as I get pretty immediate relief after stopping them. The rash has gone away although something appears to be starting up again but nothing severe like last time.
Trying to enjoy extra time with kids as they are on Christmas break this week. Keeping a 3 year old boy entertained indoors can be pretty hard!
I continue to get severe cramps early afternoon every day from the pills I take for the treatment. We haven't been able to find anything to relieve that yet. I get my week off starting next wed and I look forward to that as I get pretty immediate relief after stopping them. The rash has gone away although something appears to be starting up again but nothing severe like last time.
Trying to enjoy extra time with kids as they are on Christmas break this week. Keeping a 3 year old boy entertained indoors can be pretty hard!
Saturday, December 20, 2014
my full time job
I went to a work Christmas party last night. I miss working to do a degree, I miss the social aspect and I really did love what I did, so I do miss that. I love the company I worked for and all the friends I worked with. I am grateful that I get to spend so much time with my kids though. I feel like my new full time job is being sick, or should I say, getting better.
The first year I was out on long term disability and I would dread the phone call from the guy assigned to harass me to make sure that I was really still sick and needed to be out. Now I'm on disability through the government and since my status is considered metastatic they do not harass me anymore, which is nice.
Some days I truly wonder where the time goes. I do of course have two small ones to look after so that is where most of my time goes. Even being in the hospital for treatment and being gone for 12 hours it seems to go by fast, I think there is like a hospital time warp or something. Anyone else know what I'm talking about?
I day dream about getting cured and if I would ever want to work again. I picture myself being super skinny and drinking only green drinks and being the weird lady that lives on the corner of Acorn and Carriage that juices all day and only eats raw vegetables. I could start a blog about how I beat cancer and share all my juicing recipes...aaah maybe some day...
Then there's the days where I wonder if I'll be here in a year. What dying is like and how I really don't think I can handle chemo again if/when it comes to that. When I feel good and attend events like the Christmas party it is just so hard to believe the life I really live and the prognosis I fight daily.
But alas, these are the cards I was dealt and this is the job I do every day. There is so much suffering in the world, and I don't have it as bad as some people. I type these words nestled in my living room with my warm laptop heating my lap, sitting on a couch with heat in my home as it is FREEZING outside. My christmas tree glistens in the corner of my eye along with my family snuggling on the couch watching Frosty the Snowman. Doesn't sound so bad does it?
The first year I was out on long term disability and I would dread the phone call from the guy assigned to harass me to make sure that I was really still sick and needed to be out. Now I'm on disability through the government and since my status is considered metastatic they do not harass me anymore, which is nice.
Some days I truly wonder where the time goes. I do of course have two small ones to look after so that is where most of my time goes. Even being in the hospital for treatment and being gone for 12 hours it seems to go by fast, I think there is like a hospital time warp or something. Anyone else know what I'm talking about?
I day dream about getting cured and if I would ever want to work again. I picture myself being super skinny and drinking only green drinks and being the weird lady that lives on the corner of Acorn and Carriage that juices all day and only eats raw vegetables. I could start a blog about how I beat cancer and share all my juicing recipes...aaah maybe some day...
Then there's the days where I wonder if I'll be here in a year. What dying is like and how I really don't think I can handle chemo again if/when it comes to that. When I feel good and attend events like the Christmas party it is just so hard to believe the life I really live and the prognosis I fight daily.
But alas, these are the cards I was dealt and this is the job I do every day. There is so much suffering in the world, and I don't have it as bad as some people. I type these words nestled in my living room with my warm laptop heating my lap, sitting on a couch with heat in my home as it is FREEZING outside. My christmas tree glistens in the corner of my eye along with my family snuggling on the couch watching Frosty the Snowman. Doesn't sound so bad does it?
Wednesday, December 17, 2014
Anonymous
"Anonymous" is how a lot of your comments show up in my email if you don't log in to leave a comment. It has become comforting to see it show up in my inbox. I still love getting comments! And so many people anonymously read my blog, and thats ok too! Someone recently left an anonymous package at my door, love that too! :). Also got an edible arrangement from an anonymous friend, yum! how spoiled am I?!
But the reason of this post is actually to comment on some wonderful people that have been brought into my life recently. I just think about how these people were in a way anonymous to me at one time and now I feel like they were brought into my life for a reason. My new clinical trial nurse and my new palliative care Specialist. For those that don't know, palliative care is kind of like a symptom management person who helps with side effects from everything, the cancer and the medicines, especially the trial drugs. These two people spent a lot of time with me today and just warm my heart with their care, concern and devotion to making me feel good in so many ways. I just feel really blessed with the team I have and wanted to share that I am in great hands and feel so lucky to have these people on this journey with me!
But the reason of this post is actually to comment on some wonderful people that have been brought into my life recently. I just think about how these people were in a way anonymous to me at one time and now I feel like they were brought into my life for a reason. My new clinical trial nurse and my new palliative care Specialist. For those that don't know, palliative care is kind of like a symptom management person who helps with side effects from everything, the cancer and the medicines, especially the trial drugs. These two people spent a lot of time with me today and just warm my heart with their care, concern and devotion to making me feel good in so many ways. I just feel really blessed with the team I have and wanted to share that I am in great hands and feel so lucky to have these people on this journey with me!
Well that Was good while it lasted
I am back in the chair with everything hurting from my leg to my side tumors. I am on my off week from the pill and all I can think is that the pill was working. It causes quite the rash though and nothing they've given me seems to be helping. I feel like its finally getting a little better but I am supposed to start the pill today so it will only get worse.
Wish me luck today, I don't want to miss the treatment just because of a rash if its working but it's a pretty ugly rash!
Wish me luck today, I don't want to miss the treatment just because of a rash if its working but it's a pretty ugly rash!
Wednesday, December 10, 2014
Between the sheets
Now that I have your attention! As you can see by the title of the post I am writing a romance novel in my spare time...Just kidding....the real reason for the title is that I am sleeping in a bed again and I just love the feeling of sleeping between sheets compared to my recliner with a blanket. It's the little things right?! The tumors on my sides aren't painful like they use to be and the fluid I had is gone, and the shooting pain down my leg is gone. Lots of things to be thankful for, I want to say the drugs are working, we will see what the scan shows in a few weeks, but we all know what matters is how I feel and in that regard I'm on no pain meds and that's a great thing.
Since my mom and I didn't get to go on our vacation to Tucson we have decided to make the best of the week and stay at her friends little cottage in middletown. Although we didn't have the greatest of starts to the week, we spent the entire day Monday in Boston at Mass General because they wanted to see me for my rash, so its a good thing we didn't go away. They ended up giving me a steroid which I haven't noticed helping yet except that it seems to be helping my appetite.
We did get to spend yesterday doing some christmas shopping, and I had wanted to get the kids build-a-bears for christmas with my voice recorded in them and we accomplished that mission. It's such a cute concept and I did the whole routine of getting their heart beat going and making the biggest wish in the world to put inside the bear, we all know what the wish would be and it was a little hard not to get emotional in the build-a-bear workshop but I held it together. Then I got to pick out the cutest outfits ever to accessorize them and spend way too much money!
The pills i'm on for the trial are causing the rash so thankfully this is my week off as of today from those. So hopefully between the steroids and not being on the pills we can get that under control. It is really painful on my face and of course makes me self conscious of what I look like. It's pretty easy to conceal the back and chest in the winter. They also told me to stay out of the sun so this rainy week in New England is actually better for me than the sunny week in Tucson I'm missing! Everything was meant to be I guess.
Since my mom and I didn't get to go on our vacation to Tucson we have decided to make the best of the week and stay at her friends little cottage in middletown. Although we didn't have the greatest of starts to the week, we spent the entire day Monday in Boston at Mass General because they wanted to see me for my rash, so its a good thing we didn't go away. They ended up giving me a steroid which I haven't noticed helping yet except that it seems to be helping my appetite.
We did get to spend yesterday doing some christmas shopping, and I had wanted to get the kids build-a-bears for christmas with my voice recorded in them and we accomplished that mission. It's such a cute concept and I did the whole routine of getting their heart beat going and making the biggest wish in the world to put inside the bear, we all know what the wish would be and it was a little hard not to get emotional in the build-a-bear workshop but I held it together. Then I got to pick out the cutest outfits ever to accessorize them and spend way too much money!
The pills i'm on for the trial are causing the rash so thankfully this is my week off as of today from those. So hopefully between the steroids and not being on the pills we can get that under control. It is really painful on my face and of course makes me self conscious of what I look like. It's pretty easy to conceal the back and chest in the winter. They also told me to stay out of the sun so this rainy week in New England is actually better for me than the sunny week in Tucson I'm missing! Everything was meant to be I guess.
Saturday, December 6, 2014
Now the rash
I was warned I'd probably get a rash from the treatment. It started on my nose and is spreading all over my face and chest and back. I'm hoping if I call Monday I can get something to treat it.
I've decided not to travel to Tucson. I am just too exhausted and sick for the trip. I can postpone my tickets until when its even colder here, still something to look forward to.
I've decided not to travel to Tucson. I am just too exhausted and sick for the trip. I can postpone my tickets until when its even colder here, still something to look forward to.
Wednesday, December 3, 2014
A rough go of it
Where do I start? I ended up going to the ER on Sunday for a bladder infection. They put me on an antibiotic but unfortunately I seem to have a reaction to the pain meds for it, threw them up twice now so I just have to suffer through the pain. I have had horrible tummy trouble which I found out today is all from the pill form of the treatment I'm on, very discouraging to me. I was put on another antibiotic today because my infection is resistant to the first antibiotic as the symptoms started to worsen yesterday. I was able to get treatment and I have been gone from home almost 12 hrs and am just now leaving Boston.
I am very discouraged by the side effects from the trial. Also I have been warned my infection might be resistant to this next antibiotic And if I develop a fever they will have to admit me to give IV antibiotics and it will interfere with my trip to Tucson. Lets pray this round works!
I am very discouraged by the side effects from the trial. Also I have been warned my infection might be resistant to this next antibiotic And if I develop a fever they will have to admit me to give IV antibiotics and it will interfere with my trip to Tucson. Lets pray this round works!
Thursday, November 27, 2014
Happy Thanksgiving
I was able to get my pill part of the treatment yesterday. It was a long day just to get blood work done and get some pills! We made it home safely from Boston in the wintery mix, which thankfully turned to rain. My kids are pretty dissapointed that we don't have any snow here.
I am so thankful that I am on this trial. I have accumulated more fluid and it is really uncomfortable and painful. I don't know how long it will take before I have enough to get drained, but lets just pray that these drugs help shrink the tumors so that the fluid stops accumulating.
I am so thankful for all my friends and family who have been so supportive of me during the past 2+ years. I am so thankful for my husband who stands by my side through all of my suffering, as well as my mother. I am so thankful for my children. A friend told me the other day that I smile when they come in the room no matter how miserable I am. I don't think I ever noticed that, but I sure do smile just thinking about them. I am thankful for my brother who makes me laugh no matter what and my dad who can fix anything that's wrong in our house and continues to come back to visit even though we keep putting him to work!
I am thankful to be alive! Most people with my diagnosis live about 2 years, so just to be here today is a gift, I really have a hard time imagining living through 2015, but hopefully with this trial I will be here next year. Have a good thanksgiving, and please be thankful for everything you have, including your health!
I am so thankful that I am on this trial. I have accumulated more fluid and it is really uncomfortable and painful. I don't know how long it will take before I have enough to get drained, but lets just pray that these drugs help shrink the tumors so that the fluid stops accumulating.
I am so thankful for all my friends and family who have been so supportive of me during the past 2+ years. I am so thankful for my husband who stands by my side through all of my suffering, as well as my mother. I am so thankful for my children. A friend told me the other day that I smile when they come in the room no matter how miserable I am. I don't think I ever noticed that, but I sure do smile just thinking about them. I am thankful for my brother who makes me laugh no matter what and my dad who can fix anything that's wrong in our house and continues to come back to visit even though we keep putting him to work!
I am thankful to be alive! Most people with my diagnosis live about 2 years, so just to be here today is a gift, I really have a hard time imagining living through 2015, but hopefully with this trial I will be here next year. Have a good thanksgiving, and please be thankful for everything you have, including your health!
Sunday, November 23, 2014
Feeling better
I am supposed to call my nurse tomorrow and report on fever and everything. I haven't had a fever for a few days and I am feeling a little better. I am very nauseas all the time so that has been a struggle but I was able to go for a walk today and get out in the sun. The plan is to go Wednesday to get treated. They will only give me the pill. The IV treatment will stay on schedule, and I will go the following week for that. That works out for me since my mom and I have tickets to go home in December and hopefully I'll be well enough to make that trip. Not altering my IV schedule allows us to keep our tickets as they are. It's only 6 days but will be worth it for that warm sunshine!
Tuesday, November 18, 2014
Hope
I am still going up to Boston tomorrow, we will see what they say. My temp has been staying down near 101 which is better than close to 103. My lymph nodes are still super swollen on my neck and my throat still hurts.
Earlier today my 3 year old son, Drew, brought me one of my Alex and Ani bracelets randomly and said I want you to wear this and it is the one that says "hope". Still trying to have Hope!
Earlier today my 3 year old son, Drew, brought me one of my Alex and Ani bracelets randomly and said I want you to wear this and it is the one that says "hope". Still trying to have Hope!
Monday, November 17, 2014
Sick again and sick of it
I have had a sore throat for about a week and ended up with a high fever past few days. I was able to get In to see my primary and get on antibiotics. I am not sure how this effects the trial, I might not be able to get treatment this week, I will find out. Bummer about that but really hope this antibiotic will help me feel better!
Tuesday, November 11, 2014
The wedding
The wedding was so much fun! I got to dance and hang out with family and I actually felt okay. It was a beautiful ceremony and reception right down the street from us at the Glen so that was super convenient. Here are some pictures from the event!
Me and Bryan
Me and Rachael (my cousin)
my mom, my brother and me
me and my mom
Thursday, November 6, 2014
Friends
I have a friend who comes over all the time and gives me pedicures and foot rubs and I don't have a picture of that, but I had a few other friends come over today and Cady, my friend from work gave me a foot scrub and rub! My friend Dawn took a picture so I thought I'd share. It is always nice to have a good visit with friends to boost my spirits!
Wednesday, November 5, 2014
I survived
I had a very long day! It is 5:00 and we are leaving the hospital just in time for rush hour. The whole trial process is so interesting. Blood work is done first and then the dr visit. Then it takes them 2 hrs to mix the drug, so lots of waiting. I get multiple EKGs and lots of blood pressure readings throughout the visit. I will not get my oral pills for another 2 weeks. The nurse told me that I really shouldn't get any side effects from the drug I got today, although some people have flu like symptoms.
I actually got a little foot massage today and accupuncture so that was kind of cool. I like mass general so much more than Dana farber although it seems like when you are in a trial you get different specialized treatment than when you are just getting chemo.
I am exhausted and have a headache but anxious to get home and see my kids. Thanks for all the messages and prayers today. They were much needed for my head and my heart.
I actually got a little foot massage today and accupuncture so that was kind of cool. I like mass general so much more than Dana farber although it seems like when you are in a trial you get different specialized treatment than when you are just getting chemo.
I am exhausted and have a headache but anxious to get home and see my kids. Thanks for all the messages and prayers today. They were much needed for my head and my heart.
Nausea, aches and pains oh my
I have felt pretty awful the last couple of days. I've been sleeping in the recliner, my tumors are so painful I can't even lay on my sides for a second. I have some fluid which causes horrible cramping in my back and my abdomen. I am nauseas also I believe from the fluid. The suffering is so hard, it makes me think a lot about death because I have to believe that there is no suffering in heaven.
This trial has to work, please continue to pray for me. One of my cousins is getting married Sunday and I so badly want to attend the wedding and feel good. I want to be able to eat and not feel sick, i want to visit with my family, i want to dance! i just want to be normal again. I am so scared and nervous about the trial because I feel like its my last hope right now. Like my brother always says I just have to stay alive until there is a cure.
Heading to Boston now, if I feel ok I will try to update you all later!
This trial has to work, please continue to pray for me. One of my cousins is getting married Sunday and I so badly want to attend the wedding and feel good. I want to be able to eat and not feel sick, i want to visit with my family, i want to dance! i just want to be normal again. I am so scared and nervous about the trial because I feel like its my last hope right now. Like my brother always says I just have to stay alive until there is a cure.
Heading to Boston now, if I feel ok I will try to update you all later!
Friday, October 31, 2014
I'm in!
Just received word from Mass General that all the tests looked good and I'm all set to start Wednesday! Praise God everyone and celebrate for me!!!
Thursday, October 30, 2014
long day yesterday
Everything seemed to go well yesterday. We don't have the results of the ECHO but the EKG and the eye exam went well. The nurse will call with results of the ECHO and also let me know if they were able to obtain enough of my tumor samples to not do a biopsy. I sure hope so!
We are scheduled to be back up for my first infusion on Wednesday the 5th at 10am. I am both anxious and nervous about all of this. I want to get on the drugs ASAP as I have been experiencing a lot of pain and i am really worried about having fluid build up in my abdomen as that causes so much discomfort and eating problems.
I am going to try to enjoy this next week before I start treatment and hope that I feel well enough to continue to get out and get things done before I start. Some side effects they mentioned I will likely experience are a face rash and flu like symptoms. Neither sounds fun!
Please keep me in your prayers as we have such a long unknown journey ahead of us!
We are scheduled to be back up for my first infusion on Wednesday the 5th at 10am. I am both anxious and nervous about all of this. I want to get on the drugs ASAP as I have been experiencing a lot of pain and i am really worried about having fluid build up in my abdomen as that causes so much discomfort and eating problems.
I am going to try to enjoy this next week before I start treatment and hope that I feel well enough to continue to get out and get things done before I start. Some side effects they mentioned I will likely experience are a face rash and flu like symptoms. Neither sounds fun!
Please keep me in your prayers as we have such a long unknown journey ahead of us!
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