I hated the first icu. Not the smartest or nicest nurses in there. Some X-ray tech came in to do a chest X-ray around 1am. Sat me up all the way in the bed and made the bed hard, so it was fully inflated felt like concrete. Took the X-rays then laid me flat down (something you can't do to heart surgery patients) and she didn't make bed soft afterwards. So for 20 minutes I cried and yelled help with no response. I could not find my nurse button, could not move to look for it and the hard bed was pulling apart my chest as I laid flat on my back struggling to breathe. Finally some man ran by and I yelled as loud as I could. He popped his head in and said "did you say something ?" Apparently my loud screams were whispers. I said make my bed soft please. He did and I passed out. Worst experience of my life.
Until the 4 am sponge bath with cold water and an ugly nurse. That sucked. Then some woman walked in to take me for a walk to test my heart. This was at 730 am my surgery ended the evening before at 630 pm. This woman is crazy I'm not walking anywhere. I can't even sit up. So she prepped me despite me telling her I was not walking. I'm couldn't stay awake and my new nice icu nurse was there to take me to the other icu area. Determined this lady organized all my cords, machines and tubes that were connected to me and sat me in a chair trying to talk me into walking the halls. I kept falling asleep. After about 30 minutes she decided to take my blood pressure. 88/45 I was not walking anywhere. Ha. I win again. But really who thinks a heart patient about 12 hours after surgery is going to walk laps in the halls so she can get active heart readings??? Really?
The nice icu nurse that was laughing to herself while all that went down then she took me and all was good after that. I was happy. I thanked her. She laughed and said she was not going to make me walk around until I was ready.
Thursday, May 9, 2013
Heart surgery patients gone wild!
So the scope never happened. I was wheeled down to that department and as I came in the call came thru that it was canceled and I was headed to straight surgery. So this nice nurse explained to me that heart surgery is very risky and here is what they are going to do to you.....Oh no way lady. I will YouTube this crap later but no way are you telling me now.
I have enough medical training to know most of it but lets not freak out the patient before I go in, goofball.
So I went back up to my room, as the transporters knocked into everything along the way like my bed was some kind of bulldozer. Those guys cracked me up.
So back in my room, most of my family was there with gloomy faces. I kept the jokes going. Alexis looked worried, I could tell they all were but I wasn't. I had the easy part. I was going to sleep.
Many doctors came in that I had never met, telling me it has to come out. I was like great, lets go, I'm ready. I did call my surgeon that has done all my cancer stuff, he works a building away, I consider him my friend. I call him handsome he calls me gorgeous. He came by and talked to us, confirming it needs to come out and that the guy taking it out is amazing and he isn't worried about a thing. This dr is so laid back and has a great way of making everyone feel good. And that's all I needed to hear.
So before I knew it I was being taken again this time for good and who knew what was going to happen. So I continued the faces and jokes as my almost in tears family waved bye and I went thru the double doors. Then I cried but just for a second. Then I was ready.
Once in, they gave me those amazing drugs that make you feel so good and I was out.
Apparently the surgery went well. I'm still here. :) they had to go thru the front of my chest cutting the entire breast bone and leaving me with a beautiful scar. I guess my chest can't be my fav part of my body now... Ha!
Ended up in some icu for after heart surgery. Woke up hearing my family talking. I could not see them but I was so hot and I had some tube in my throat that stopped me from being able to speak and i wanted it out. My first goal was getting these hot blankets off me. So using hand signals I motioned like I was hot acting as if my hand was a fan. Nope they thought I wanted them closer, which made me hotter. So I grabbed the nurses hand and wrote "HOT" on it with my finger. He understood and the blankets came off. Next goal... Getting this thing out of my throat. Apparently being on the heart and lung machine you have to prove you can breathe on your own for a certain amount of time before the tube gets removed and the machine stops breathing for you. As my daughter stood beside me saying mom breathe! I went in and out. So I was breathing then I stopped so she yelled again. That's what I remember most, her yelling "breathe". Then some guy kept telling me to open my eyes. I did dramatically each time he asked but I was tired and didn't want my eyes open. But I could hear him and he was not taking that tube out until I woke up all the way...But I was awake... So the asshole in me pretended to start gaging and just like that he said we have to get this out and like that it was gone. So I was way more awake then they thought as I could think up this amazing plan to get what I wanted. Hahaha. Moral of the story... Don't pull me out of my sleep if you have tubes down my throat.
:)
I have enough medical training to know most of it but lets not freak out the patient before I go in, goofball.
So I went back up to my room, as the transporters knocked into everything along the way like my bed was some kind of bulldozer. Those guys cracked me up.
So back in my room, most of my family was there with gloomy faces. I kept the jokes going. Alexis looked worried, I could tell they all were but I wasn't. I had the easy part. I was going to sleep.
Many doctors came in that I had never met, telling me it has to come out. I was like great, lets go, I'm ready. I did call my surgeon that has done all my cancer stuff, he works a building away, I consider him my friend. I call him handsome he calls me gorgeous. He came by and talked to us, confirming it needs to come out and that the guy taking it out is amazing and he isn't worried about a thing. This dr is so laid back and has a great way of making everyone feel good. And that's all I needed to hear.
So before I knew it I was being taken again this time for good and who knew what was going to happen. So I continued the faces and jokes as my almost in tears family waved bye and I went thru the double doors. Then I cried but just for a second. Then I was ready.
Once in, they gave me those amazing drugs that make you feel so good and I was out.
Apparently the surgery went well. I'm still here. :) they had to go thru the front of my chest cutting the entire breast bone and leaving me with a beautiful scar. I guess my chest can't be my fav part of my body now... Ha!
Ended up in some icu for after heart surgery. Woke up hearing my family talking. I could not see them but I was so hot and I had some tube in my throat that stopped me from being able to speak and i wanted it out. My first goal was getting these hot blankets off me. So using hand signals I motioned like I was hot acting as if my hand was a fan. Nope they thought I wanted them closer, which made me hotter. So I grabbed the nurses hand and wrote "HOT" on it with my finger. He understood and the blankets came off. Next goal... Getting this thing out of my throat. Apparently being on the heart and lung machine you have to prove you can breathe on your own for a certain amount of time before the tube gets removed and the machine stops breathing for you. As my daughter stood beside me saying mom breathe! I went in and out. So I was breathing then I stopped so she yelled again. That's what I remember most, her yelling "breathe". Then some guy kept telling me to open my eyes. I did dramatically each time he asked but I was tired and didn't want my eyes open. But I could hear him and he was not taking that tube out until I woke up all the way...But I was awake... So the asshole in me pretended to start gaging and just like that he said we have to get this out and like that it was gone. So I was way more awake then they thought as I could think up this amazing plan to get what I wanted. Hahaha. Moral of the story... Don't pull me out of my sleep if you have tubes down my throat.
:)
Thursday, April 25, 2013
Good news/bad news. Which do you want first?
I said the bad news. Dr said how about the good news first? I was like, nope I want the bad news first thanks. Of course I got the good news.
Ct scan results are back after todays tests. Still in remission, whoo hoo! Tumors are just about all gone, one in my belly that is at 3cm and that's about it.
Great.
What's the bad news?
Oh there is a golf ball sized blood clot in your heart. And we already have a room waiting for you at the hospital. Head there now.
So there is this golf ball in something that is the size of my fist. Sitting at Siani, admitted and waiting. Laying in a bed that is got air in it so each time I move it inflates and deflates automatically. Annoying as hell.
Got to Siani, a wonderful hospital I might add. People here are awesome. Drs are completely on top of this. And apparently I am interesting and causing all kinds of attention and interest from all the doctors.
So when I arrived I was lead to my private room with a view. Nurses came to whisk me away to get scans. Of course the scan with the huge golf ball was enough to cause a stir so the nurses called the dr in with "you have got to see this".
So they are pretty sure it's a clot and pretty sure it's not fully attached so there are two options.... And tomorrows scope will determine what happens.
Tomorrow I will be put to sleep, a scope down my throat and they will see from the inside what is happening. If its a clot and its attached pretty well to the wall then I will sit here and continue to get blood thinners (which is happening now) then go home and have to give myself injections twice a day for 3 months or so.
But if its loose which is what the scans today seemed to point to then they will have to do open heart surgery to remove it.
But hey my cancer is gone and that's pretty damn cool. :)
It's been a long day. Xoxoxo
Ct scan results are back after todays tests. Still in remission, whoo hoo! Tumors are just about all gone, one in my belly that is at 3cm and that's about it.
Great.
What's the bad news?
Oh there is a golf ball sized blood clot in your heart. And we already have a room waiting for you at the hospital. Head there now.
So there is this golf ball in something that is the size of my fist. Sitting at Siani, admitted and waiting. Laying in a bed that is got air in it so each time I move it inflates and deflates automatically. Annoying as hell.
Got to Siani, a wonderful hospital I might add. People here are awesome. Drs are completely on top of this. And apparently I am interesting and causing all kinds of attention and interest from all the doctors.
So when I arrived I was lead to my private room with a view. Nurses came to whisk me away to get scans. Of course the scan with the huge golf ball was enough to cause a stir so the nurses called the dr in with "you have got to see this".
So they are pretty sure it's a clot and pretty sure it's not fully attached so there are two options.... And tomorrows scope will determine what happens.
Tomorrow I will be put to sleep, a scope down my throat and they will see from the inside what is happening. If its a clot and its attached pretty well to the wall then I will sit here and continue to get blood thinners (which is happening now) then go home and have to give myself injections twice a day for 3 months or so.
But if its loose which is what the scans today seemed to point to then they will have to do open heart surgery to remove it.
But hey my cancer is gone and that's pretty damn cool. :)
It's been a long day. Xoxoxo
Tuesday, April 23, 2013
Answers tomorrow
sorry for the delay, people keep asking... here is all i have....
Tomorrow, hospital first thing for scans and blood work and dr appt to discuss going forward or stopping. Looking forward to those blood numbers since i have been busy traveling i have missed some blood tests, hopefully things are good. I feel great, not tired or weak, i feel just fine. Actually I have been having a little too much fun ... :)
I have set myself up mentally for this being my last chemo, refusing the actual last one not to mention the follow ups for the next year... no way im doing that. I guess the scans will determine the decision and the call to hopkins. Skipping on the bone marrow thing for now, my friend whos a dr at hopkins says i have time to wait so not to rush it.
chemo Thursday and Friday.... blah.
Tomorrow, hospital first thing for scans and blood work and dr appt to discuss going forward or stopping. Looking forward to those blood numbers since i have been busy traveling i have missed some blood tests, hopefully things are good. I feel great, not tired or weak, i feel just fine. Actually I have been having a little too much fun ... :)
I have set myself up mentally for this being my last chemo, refusing the actual last one not to mention the follow ups for the next year... no way im doing that. I guess the scans will determine the decision and the call to hopkins. Skipping on the bone marrow thing for now, my friend whos a dr at hopkins says i have time to wait so not to rush it.
chemo Thursday and Friday.... blah.
Thursday, March 21, 2013
Remission and Decision
So a few weeks ago I was scanned and had a bone marrow test. Scans showed no active cancer, nodes are shrinking and all the doctors and nurses are so happy. Bone marrow showed no cancer in either side. This is amazing news! To go from stage 4 to remission in 2 treatments is unbelievable. It should have taken at least 6 months to a year. This cancer med study is amazing, the doctors and nurses are calling me all the time getting updates, blood work weekly, constant attention and love from all the Dr's and nurses here. My family, friends, bosses and work family are all so great keeping my attitude in the right place, making life and work fun... so I rocked this just like I rock everything else...with amazing awesomeness. :)
so that whole "too good to be true" thing hits right about now.
NH Follicular Lymphoma almost always returns. Dr's don't have to deal with this often because the people normally getting this type of cancer are 60,70,80 years old, so they die of natural causes before it can return again. But since I'm 33 this cancer can return 1-2 times before I die. It could come back next year, 5 years, 10 years... no one knows. I have read about young people getting it back 3 times in 6 years after being in remission, and I have read about people that have been in remission for over 20 years with no signs of it returning.
So my Dr and I had a chat. First of all I have to keep going and complete my 6 treatments. I'm sitting thru #4 right now. In 35 more days I get another and 35 after that the last one of this mission.
Then the decision.
Option one. Continue with chemo after the 6th treatment, but this would be every 70 days and would run into Jan 2014. But this only continues the treatment I have been getting to be sure there are no cancer cells hiding and waiting to grow. This option does not cure the cancer forever just treats what I had in hopes it does not return.
Option two. "Hopkins Bone Marrow transplant" After my #6 treatment i would get a dose of chemo 10 times the power i have been receiving. Losing my hair most likely that day, killing just about everything inside of me including my bone marrow. Sitting in Hopkins for 2 weeks waiting for my blood counts to go up. Opening me up to all kinds of issues. Then after my blood counts come back up I would get a bone marrow transplant, from either a donor or my cleaned marrow that would be taken before the insane dose of killer chemo gets delivered.
It was put to me honestly and nicely... "if I don't die from an infection in the hospital in two weeks, I could die from the bleeding out during the transplant and or infection from the surgery not to mention chance for a rejection." The risk of death is somewhat small BUT if I died from something dumb when i could have maybe lived for 20 years cancer free, that would be a huge waste. Plus this option I would be out of commission for 2 months, we ALL know i CANT sit still that long.
I am a great candidate for this option and it would make it so i never get this type of cancer ever again. However the risks of infection and death are a little to high for me and dying this summer is just not in my schedule. I have WAY too much fun to have.
So I am doing option one, chemo until '14. the every 70 days thing is good. If it comes back I will start again and they rethink the bone marrow thing.
I feel amazing, other than being extra sleepy in the morning. I am working out at the gym, running, traveling, still working and I am managing my chemo brain far better now. Things are good.
So we will keep going with the same.
Sitting here getting chemo now. Dad is reading. Sun is shining. Its going to be a good life, I can feel it. This cancer BS just makes me stronger.
xoxo B
so that whole "too good to be true" thing hits right about now.
NH Follicular Lymphoma almost always returns. Dr's don't have to deal with this often because the people normally getting this type of cancer are 60,70,80 years old, so they die of natural causes before it can return again. But since I'm 33 this cancer can return 1-2 times before I die. It could come back next year, 5 years, 10 years... no one knows. I have read about young people getting it back 3 times in 6 years after being in remission, and I have read about people that have been in remission for over 20 years with no signs of it returning.
So my Dr and I had a chat. First of all I have to keep going and complete my 6 treatments. I'm sitting thru #4 right now. In 35 more days I get another and 35 after that the last one of this mission.
Then the decision.
Option one. Continue with chemo after the 6th treatment, but this would be every 70 days and would run into Jan 2014. But this only continues the treatment I have been getting to be sure there are no cancer cells hiding and waiting to grow. This option does not cure the cancer forever just treats what I had in hopes it does not return.
Option two. "Hopkins Bone Marrow transplant" After my #6 treatment i would get a dose of chemo 10 times the power i have been receiving. Losing my hair most likely that day, killing just about everything inside of me including my bone marrow. Sitting in Hopkins for 2 weeks waiting for my blood counts to go up. Opening me up to all kinds of issues. Then after my blood counts come back up I would get a bone marrow transplant, from either a donor or my cleaned marrow that would be taken before the insane dose of killer chemo gets delivered.
It was put to me honestly and nicely... "if I don't die from an infection in the hospital in two weeks, I could die from the bleeding out during the transplant and or infection from the surgery not to mention chance for a rejection." The risk of death is somewhat small BUT if I died from something dumb when i could have maybe lived for 20 years cancer free, that would be a huge waste. Plus this option I would be out of commission for 2 months, we ALL know i CANT sit still that long.
I am a great candidate for this option and it would make it so i never get this type of cancer ever again. However the risks of infection and death are a little to high for me and dying this summer is just not in my schedule. I have WAY too much fun to have.
So I am doing option one, chemo until '14. the every 70 days thing is good. If it comes back I will start again and they rethink the bone marrow thing.
I feel amazing, other than being extra sleepy in the morning. I am working out at the gym, running, traveling, still working and I am managing my chemo brain far better now. Things are good.
So we will keep going with the same.
Sitting here getting chemo now. Dad is reading. Sun is shining. Its going to be a good life, I can feel it. This cancer BS just makes me stronger.
xoxo B
Thursday, February 14, 2013
Great chemo day
Day 1 treatment 3
Completed :)
3 doses of Benadryl no allergic reaction this time from chemo. Very happy about that. They had it dripping at 400 which is great and I got done faster. Home by 430. :)
Dad and Becky were great company, loved having them visit!
Feeling great tonight!
Happy valentines day ❤❤❤
Completed :)
3 doses of Benadryl no allergic reaction this time from chemo. Very happy about that. They had it dripping at 400 which is great and I got done faster. Home by 430. :)
Dad and Becky were great company, loved having them visit!
Feeling great tonight!
Happy valentines day ❤❤❤
Monday, February 11, 2013
Amazing news!
I had my pet/ct scans this morning. Dr just called with the report! The tumors are shrinking! The largest one was 14.1cm is now down to 2.7 cm. the others are smaller as well. The cancer looks inactive is most of the nodes! Dr was so excited and shocked how quickly I'm responding to this treatment. Apparently I am amazing. :)
Words can not explain how excited I am right now. Wow, huge sigh of relief.
Chemo Thursday and Friday. Then hopefully with all these amazing results I can stop chemo soon. Fingers crossed.
Xoxoxoxoxo
Words can not explain how excited I am right now. Wow, huge sigh of relief.
Chemo Thursday and Friday. Then hopefully with all these amazing results I can stop chemo soon. Fingers crossed.
Xoxoxoxoxo
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