Today has to be one of the happiest days of my life. The morning started off with news of a 4500 white blood cell count and no need for any transfusions. The doctor rushed through the discharge papers as we were all packed up and ready to go. They sent us away with hugs, good-wishes, and an extensive list of do's and don'ts at home.
When we arrived at the house, my mom cried. She kissed the doorway in excitement! I followed her around the house while she blissfully looked in each room. She kept saying, "I just never thought I would see my house again." After a couple laps around the house, she showered, ate lunch (an entire mini-pizza) at the kitchen table, and then crawled in her cozy bed for a much-needed and well-deserved nap.
I am so thankful to so many people who helped get us all through this mess. A long list of beautiful nurses, an intelligent team of doctors, my strong stepdad, and all my friends and family sending us positive thoughts from home. It is just such a miracle! or pretty damn amazing science.
We are definitely not in the clear. She has to be watched closely for infection, visit the clinic once a day for bloodwork, have a couple minor surgeries, receive monthly pulmonary tests, and maintain a special diet for immuno-suppressed patients that is low in Vitamin K (as to not counter the blood thinners) and high in cancer fighting nutrients all while having little to no appetite. Mandi and I are on it! She will get a scan on day +100 to see if the cancer is gone and then will regain her energy level between 6 months and a year. In the meantime, she has to stay away from public places until her wbc completely recover. She is able to have limited visitors and can't be around kids at all. It's no picnic, but it's all just an inconvenice compared to the mountain she just climbed.
Thank goodness, the hard part has passed. Now on to a new life for us all. Our new mantra is: New Cells. New Rules, which basically means she needs to stop living her life out of obligation and start living in the present for herself! I love you mom!
Friday, December 4, 2009
Thursday, December 3, 2009
Day +10
Snow is my new favorite thing. The doctor told us it is suppose to snow again tomorrow, which also happens to be my mom's projected release day. She is scamming a way to get out of here today! Her counts doubled again last night. She is up to 1300 white blood cells!!
Last night wasn't too eventful. She had some stomach problems from all the antibiotics (which they took her off of today!). She also had an allergic reaction to one of them that made a rash develop on her legs and arms. It is almost gone this morning, though. What do they expect giving her 4 different antibiotics.
Other than that, we are just waiting and smiling. In the meantime, she is trying to lure me into her plot to go home today. We are working out what to say to the doctors as I type...
Last night wasn't too eventful. She had some stomach problems from all the antibiotics (which they took her off of today!). She also had an allergic reaction to one of them that made a rash develop on her legs and arms. It is almost gone this morning, though. What do they expect giving her 4 different antibiotics.
Other than that, we are just waiting and smiling. In the meantime, she is trying to lure me into her plot to go home today. We are working out what to say to the doctors as I type...
Wednesday, December 2, 2009
Day +9!
Today was magical. We woke this morning to heavy, white snow fall the 2nd week in December! Immediately following, the team of doctors arrived with the best news of my entire life! My mom's white blood cell count is at .5!! Engraftment! The stem cells produced disease fighting cells, and on top of that, the count is suppose to double tomorrow. They projected her release day for this Friday. We cried like babies all morning. Nothing else mattered. I finally feel that we have our lives back. It's only up from here.
I could tell the change in energy last night. At around 9:00pm her fever broke and then about 1:00am she became really chatty. I felt like we were having a slumber party. We joked and laughed and talked for at least an hour. We both attributed it to a breaking fever, but we secretly hoped it was a climbing wbc count.
Since her neutrophils are still only 300, she continues on one of the antibiotics, a bag of potassium and antifungals. Tomorrow she will hopefully be off everything but fluids. She will go home with a year prescription of antivirals and orders to rest, rest, rest!
After we calmed down from the excitement and emotion, my mom had the energy to bathe and walk a lap around our hallway. This was exciting for me since she hasn't been out of bed (except for bathroom breaks) for days. A few minor set backs in the day happened after the walk. She had a strange rash break out on both her legs. We are waiting for the doctor to come and diagnose it. Then after lunch she had some more stomach issues. The nurse is going to take the last culture of that. I hope it is just from her body processing all the medication being pumped into her.
We also found out that Mandi is fighting bronchitis and can't come in to town with the baby tomorrow. She will have to postpone her trip until she gets well. Mom and I were looking so forward to seeing them this week.
However, as long as my mom is well enough to go home and begin the road to recovery, we can handle anything! Signing off a happy camper.
I could tell the change in energy last night. At around 9:00pm her fever broke and then about 1:00am she became really chatty. I felt like we were having a slumber party. We joked and laughed and talked for at least an hour. We both attributed it to a breaking fever, but we secretly hoped it was a climbing wbc count.
Since her neutrophils are still only 300, she continues on one of the antibiotics, a bag of potassium and antifungals. Tomorrow she will hopefully be off everything but fluids. She will go home with a year prescription of antivirals and orders to rest, rest, rest!
After we calmed down from the excitement and emotion, my mom had the energy to bathe and walk a lap around our hallway. This was exciting for me since she hasn't been out of bed (except for bathroom breaks) for days. A few minor set backs in the day happened after the walk. She had a strange rash break out on both her legs. We are waiting for the doctor to come and diagnose it. Then after lunch she had some more stomach issues. The nurse is going to take the last culture of that. I hope it is just from her body processing all the medication being pumped into her.
We also found out that Mandi is fighting bronchitis and can't come in to town with the baby tomorrow. She will have to postpone her trip until she gets well. Mom and I were looking so forward to seeing them this week.
However, as long as my mom is well enough to go home and begin the road to recovery, we can handle anything! Signing off a happy camper.
Tuesday, December 1, 2009
Day +8
Another crappy day. I got back to the hospital around 10:30 this morning after catching up on sleep (12 hours) at my mom's house. Tim took care of her last night. From the updates, she ran a fever most of the night, but luckily woke up this morning without one. They ran a bunch of tests to check for infection. Chest xray, urine sample, blood samples. All came out clear today. Her fever spiked this afternoon, again right after the platelet transfusion (which she had to have again today.) It is now hovering around 100.3. They just came in and told us that if it gets to 100.5 they will do another round of tests. Unfortunately we don't find out those results for 24 hours. She has been given 4 bags of antibiotics since the first fever, so hopefully we are catching any infection.
As far as her blood counts, her wbc are still at 0.0, platelets are 10, and red blood cells 80, I think. She needed a platelet transfusion, which by the way, is the nastiest color yellow I have ever seen, and a bag of potassium. In addition to all that junk, they have her on the normal cocktail of antibiotics, anitvirals, antifungals, and fluids.
It is just a waiting game at this point. I am praying we will see some white blood cells in the next couple days. We will all feel so much better. In the meantime, I am trying my best to keep my mom positive and moving as much as possible so fluid won't build up and clotting won't occur. The physical therapist showed us some bed exercises to do. We both worked out our butt muscles yesterday.
Mandi and I are planning her diet when she returns home. For the first couple months she is on a immuno-suppressed diet, which means she has to be careful with fresh foods. Then she will be back on the blood thinners (for the rest of her life) so we have to monitor her levels of Vitamin K. It will be a hard balance to coordinate foods that are cancer fighting and foods that aren't too high in Vit K, so that her blood clots will be managed. We almost have it down.
Back to my bench. I hope my mom has a better night. At least one without fever, infection, nausea, or stomach pains. Something comfortable. And lots of sleep! For us both.
All the nurses and doctors on this wing love her. Her sweetness is infectious. Everyone is routing for her, especially the peson who loves her most!
As far as her blood counts, her wbc are still at 0.0, platelets are 10, and red blood cells 80, I think. She needed a platelet transfusion, which by the way, is the nastiest color yellow I have ever seen, and a bag of potassium. In addition to all that junk, they have her on the normal cocktail of antibiotics, anitvirals, antifungals, and fluids.
It is just a waiting game at this point. I am praying we will see some white blood cells in the next couple days. We will all feel so much better. In the meantime, I am trying my best to keep my mom positive and moving as much as possible so fluid won't build up and clotting won't occur. The physical therapist showed us some bed exercises to do. We both worked out our butt muscles yesterday.
Mandi and I are planning her diet when she returns home. For the first couple months she is on a immuno-suppressed diet, which means she has to be careful with fresh foods. Then she will be back on the blood thinners (for the rest of her life) so we have to monitor her levels of Vitamin K. It will be a hard balance to coordinate foods that are cancer fighting and foods that aren't too high in Vit K, so that her blood clots will be managed. We almost have it down.
Back to my bench. I hope my mom has a better night. At least one without fever, infection, nausea, or stomach pains. Something comfortable. And lots of sleep! For us both.
All the nurses and doctors on this wing love her. Her sweetness is infectious. Everyone is routing for her, especially the peson who loves her most!
Monday, November 30, 2009
Day +7
Last night was a bad night for both of us. Neither of us could sleep and my mom fought nausea and a stomach ache all night. She woke up feeling the same. Just altogether horrible. I can't believe how bad she looks and feels. And the doctor keeps saying this is completely normal. Her wbc is still .0. her platelets and red blood cells dropped so they are going to start a platelet transfusion in a bit. She is now receiving 200 mg of Flucanazole, an antifungal, followed by the typical regimen of antibiotics, antivirals, and antinausea meds as needed. She is still hooked up to the saline solution for dehydration since she can't eat or drink anything (besides a few sips of coke, which is bizarre- she hasn't had coke since before I was born). They are also giving her another shot of Nupegeon to stimulate her new stem cells to produce wbc first. It's so fascinating that science has come this far.
Before I go to bed every night, I repeat my mantra: "engraft, engraft, engraft." The doctor thinks she is right on track. They said she will begin to see some white blood cells in a couple days. Once we see a few, we should expect exponential growth. They are still estimating our release day either Sunday or Monday. One week left. Seems like forever to us both. I just can't imagine her feeling this way for another 5 days! It takes everything she has to just sit up in bed. She keeps her hand over her eyes to shade the light from the window (which we keep open all the time to remind us of a world to get back to). She has hardly spoken today, even to the doctor and nurses. I am trying to be so positive about it all, but I honestly hate seeing her this way. It just makes me so sad and scared. I know she will get better, I really do. I just don't want to leave her side until I know that the white blood cells are back and fighting for her. It's almost that I have to fight for her until her body will.
In the meantime, I have finished four novels and about 10 magazines, caught up on video poker strategies, perused facebook to exhaustion, read car reviews, worked on the nonprofit, paced the hallway for exercise, written this blog, made a nutrition plan for my mom, finished several crossword puzzles, relearned about electricity on wikipedia, and tried to sleep (which is mostly just lying awake thinking). i'd say I keep pretty busy. In between my endeavors, I check my mom's breathing. I do this all night, even though the nurse checks her vitals every couple hours.
I pray, that if she can't have a better day today, then she sleeps through it. So far, so good.
Before I go to bed every night, I repeat my mantra: "engraft, engraft, engraft." The doctor thinks she is right on track. They said she will begin to see some white blood cells in a couple days. Once we see a few, we should expect exponential growth. They are still estimating our release day either Sunday or Monday. One week left. Seems like forever to us both. I just can't imagine her feeling this way for another 5 days! It takes everything she has to just sit up in bed. She keeps her hand over her eyes to shade the light from the window (which we keep open all the time to remind us of a world to get back to). She has hardly spoken today, even to the doctor and nurses. I am trying to be so positive about it all, but I honestly hate seeing her this way. It just makes me so sad and scared. I know she will get better, I really do. I just don't want to leave her side until I know that the white blood cells are back and fighting for her. It's almost that I have to fight for her until her body will.
In the meantime, I have finished four novels and about 10 magazines, caught up on video poker strategies, perused facebook to exhaustion, read car reviews, worked on the nonprofit, paced the hallway for exercise, written this blog, made a nutrition plan for my mom, finished several crossword puzzles, relearned about electricity on wikipedia, and tried to sleep (which is mostly just lying awake thinking). i'd say I keep pretty busy. In between my endeavors, I check my mom's breathing. I do this all night, even though the nurse checks her vitals every couple hours.
I pray, that if she can't have a better day today, then she sleeps through it. So far, so good.
Sunday, November 29, 2009
Day +6
So far, today has been better than yesterday. My mom seems to have a tiny more pep, although she still feels super crappy. The doctor said that she is still doing great besides her mouth sores and tiny bit of leftover stomach issues. Still can't believe this condition is considered "great." Her WBC are at .1 again but her platelets and rbc counts are steady enough to skip any transfusions. yay! She still receives 2 doses of Levoquin (antibiotic), 2 doses of Acyclovir (antivirals), Ativan if she can't sleep, and either Zofran or Phenagrin for nausea. I thought that after the stem cell transplant, she was finished with the drug pumping. I guess it was just the beginning. The doctors told us she will take the antivirals for an entire year (and get all her immunization shots again). It's so crazy to think that they basically killed her to bring her back. I am just so thankful that her stem cells are back in her body.
My mom hasn't really been able to eat much today. she took a nibble of a saltine cracker and washed it down with a sip of coke, the only thing that appeals to her. It made her really nauseous so the nurse gave her some Nexium through the IV. This sometimes helps settle an acidic stomach. She has pretty much just dozed on and off all day, although when she wakes she can talk to me some. She was even able to sit up a bit to watch slideshow of pictures Mandi sent of the baby. It was the highlight of both our days. It's funny how your perspective on life changes after being confined to a small room for days. I forget that a world exists outside these walls.
Aye, my tangents.
So, Mandi is coming this Thursday (Day+10) . It gives us both something to look forward to. I am doing pretty well, considering. I finally fell asleep at 5 am this morning and slept lightly until about 10. I am feeling the wave of tired hit, so I plan to doze a little this afternoon. Passes the time nicely. Plus, Andrew brought my comfy sleeping bag back from Austin. Made such a difference last night.
All in all the day has been calm for our room, which is more than welcomed after the last couple of days. Our nurse staff is great again and the IV pole has been quiet. Hopefully it will stay this way. The only commotion occurred this morning when a transplant patient was taken to ICU. These patients have already been through hell, I can't imagine any more trauma. Going to lay down and take a nap now. Maybe I can sleep until next Saturday...
My mom hasn't really been able to eat much today. she took a nibble of a saltine cracker and washed it down with a sip of coke, the only thing that appeals to her. It made her really nauseous so the nurse gave her some Nexium through the IV. This sometimes helps settle an acidic stomach. She has pretty much just dozed on and off all day, although when she wakes she can talk to me some. She was even able to sit up a bit to watch slideshow of pictures Mandi sent of the baby. It was the highlight of both our days. It's funny how your perspective on life changes after being confined to a small room for days. I forget that a world exists outside these walls.
Aye, my tangents.
So, Mandi is coming this Thursday (Day+10) . It gives us both something to look forward to. I am doing pretty well, considering. I finally fell asleep at 5 am this morning and slept lightly until about 10. I am feeling the wave of tired hit, so I plan to doze a little this afternoon. Passes the time nicely. Plus, Andrew brought my comfy sleeping bag back from Austin. Made such a difference last night.
All in all the day has been calm for our room, which is more than welcomed after the last couple of days. Our nurse staff is great again and the IV pole has been quiet. Hopefully it will stay this way. The only commotion occurred this morning when a transplant patient was taken to ICU. These patients have already been through hell, I can't imagine any more trauma. Going to lay down and take a nap now. Maybe I can sleep until next Saturday...
Saturday, November 28, 2009
Day +5
I hate Day +5. A lot has happened since I last wrote. Yesterday I was told not to come back to the hospital. I couldn't tell why my mom didn't want me there. I could sense something was wrong. I finally got a call from her that evening. She told me that the nurses were concerned that she might have C-def, a bacterial growth that causes severe diarrhea. I found out that yesterday was the worst day she has had in her life.. her words. She had to have 2 bags of blood, which I guess went ok. She got extremely nauseous and had stomach issues all day. She said she felt horrible and fluish. On top of feeling this terrible, the hospital was short-staffed (which is unacceptable on this floor). There were only 2 nurses on the entire floor and one was completely incompetent. She spilled blood twice and wasn't taking proper precautions to keep things sanitized. We heard that the entire floor complained. My mom requested to never have her again and today we have the best nurse on the floor. She even gave me tips on a good bathroom to use.
So, this morning Dr. V told us not to worry about the C-def infection, if that is the case. She said it is treatable (which is contrary to what I read online). We just recently were told that the preliminary culture came out negative. I was advised to be extremely careful around my mom right now. Her WBC is finally at 0.0 and will stay that way for another 5-10 days.-I can't imagine. The doctor also told her she is doing great. I can't believe you can be doing great in this condition! She said that the greatest risk we have at this point is an infection and not to get scared if that happens. It is suppose to be routine. Hmm.
When I first saw my mom this morning, my breath was taken. I have never seen her look so terrible. I am really scared for the first time. There is just so much risk at this point and there will continue to be for at least 5 more days. I can't imagine. Just when I thought things were looking great, I feel scared and discouraged. I am of course, not showing this to my mom. She is extemely drugged right now- they gave her a higher dose of benedryl before the platelet transfusion. She keeps falling asleep and waking up and slurring her words and just seems uncomfortable. I HATE this for her. This is everything we were warned about and I expected, I just had no idea it would hit me this way. Last night I begged Andrew to stay after the news of a potential infection. I couldn't sleep. I felt so helpless and out of control. I can handle things fine when I'm here. It's when I'm away that they seem to fall apart.. on my end and on hers.
I know we will get through this. I plan on staying here for the next 5 days in a row, so that Tim doesn't expose her to anything inadvertently. I love my mom more than words. I honestly don't know what I would do without her. I try to get through it by imagining what things will be like when she gets well. I think about going shopping with Mandi and Rell and hanging out at my house and going out in Dallas and finally enjoying life without worry.
Sorry to ramble. Just so many jumbled thoughts going through my head. Need to escape for a bit.
Will come back and finish the day.
So, this morning Dr. V told us not to worry about the C-def infection, if that is the case. She said it is treatable (which is contrary to what I read online). We just recently were told that the preliminary culture came out negative. I was advised to be extremely careful around my mom right now. Her WBC is finally at 0.0 and will stay that way for another 5-10 days.-I can't imagine. The doctor also told her she is doing great. I can't believe you can be doing great in this condition! She said that the greatest risk we have at this point is an infection and not to get scared if that happens. It is suppose to be routine. Hmm.
When I first saw my mom this morning, my breath was taken. I have never seen her look so terrible. I am really scared for the first time. There is just so much risk at this point and there will continue to be for at least 5 more days. I can't imagine. Just when I thought things were looking great, I feel scared and discouraged. I am of course, not showing this to my mom. She is extemely drugged right now- they gave her a higher dose of benedryl before the platelet transfusion. She keeps falling asleep and waking up and slurring her words and just seems uncomfortable. I HATE this for her. This is everything we were warned about and I expected, I just had no idea it would hit me this way. Last night I begged Andrew to stay after the news of a potential infection. I couldn't sleep. I felt so helpless and out of control. I can handle things fine when I'm here. It's when I'm away that they seem to fall apart.. on my end and on hers.
I know we will get through this. I plan on staying here for the next 5 days in a row, so that Tim doesn't expose her to anything inadvertently. I love my mom more than words. I honestly don't know what I would do without her. I try to get through it by imagining what things will be like when she gets well. I think about going shopping with Mandi and Rell and hanging out at my house and going out in Dallas and finally enjoying life without worry.
Sorry to ramble. Just so many jumbled thoughts going through my head. Need to escape for a bit.
Will come back and finish the day.
Friday, November 27, 2009
Day +4
I woke up at my mom's house this morning. It seems so weird without her here. I found out that her WBC is at .2 this morning. Looks like we are still waiting for the bottom. She seems about the same as yesterday. maybe a bit more tired. The doctor said she will have to get a transfusion today, which they will start in about an hour. It takes 6 hours total to do two bags of blood. They dosed her with Benedryl as usual in case an allergic reaction occurs. This typically makes her sleepy and then hyped up at night. Hate that for her. It is hard enough to sleep as it is. She said that they gave her something to help her sleep better last night. she got about a 4 hour stretch, which is really good in her situation.
The doctor told her this morning that once her count gets between 500 and 1,000 she will be able to go home if she wants. This usually occurs at Day +10 to Day +14, which is in about a week to 10 days from now. I feel that amount of time is doable.
Once the laundry dries, I am heading back up there. It was surprisingly hard to leave yesterday, and I am anxious to get back. I just keep wondering what if something happens while I'm gone. Plus, no one can take better care of her than I. No offense to my stepdad, because I don't know what we would do without him, but I'm a control freak. I am also excited to put up a collage of pictures I made her while I was gone. She has to stare at a blank, white hospital wall all day. She isn't able to read or focus on TV much right now, so I hope this will help pass the time.
The doctor told her this morning that once her count gets between 500 and 1,000 she will be able to go home if she wants. This usually occurs at Day +10 to Day +14, which is in about a week to 10 days from now. I feel that amount of time is doable.
Once the laundry dries, I am heading back up there. It was surprisingly hard to leave yesterday, and I am anxious to get back. I just keep wondering what if something happens while I'm gone. Plus, no one can take better care of her than I. No offense to my stepdad, because I don't know what we would do without him, but I'm a control freak. I am also excited to put up a collage of pictures I made her while I was gone. She has to stare at a blank, white hospital wall all day. She isn't able to read or focus on TV much right now, so I hope this will help pass the time.
Thursday, November 26, 2009
Day +3
Day +3 doesn't seem like anything, after all we have gone through so far. Before the entire stem cell transplant even started she had 3 months of high dose chemotherapy and then a week of waiting. It is crazy we are only 3 days into recovery. Plus, we both look forward to marking an x on the calendar when a day has passed and were deprived of the satisfaction this morning when a nurse took the liberty to do it for us. I feel that we didn't really earn that day. I will beat her tomorrow! (BTW, please excuse my poor writing. I'm extremely tired).
So, this morning the doctors came in to tell us her wbc levels were at .3. She seemed to be doing okay last night and early this morning. She was able to go to the bathroom and walk around a little. It wasn't until this afternoon that the crash began. I noticed her face became completely white, her eyes look sunken, and her energy level was extremely low. Fortunately, she is still able to talk and joke with me some.
The doctor mentioned that she doesn't really need a transfusion at this point, but will probably need one tomorrow. She also mentioned that if she feels dizzy at all, we need to order one. She reminded my mom of the fainting spell during chemo last week ( my mom neglected to mention this to me)! I learned she fainted in the bathroom and thank goodness Tim caught her. I can't get the image out of my head. It is the absolute worst feeling I think I've ever had to think of my mom, who has always taken care of me and been the strong one, so weak and helpless. Ugh. Can't even write about it.
Moving on. I am extremely exhausted today. Three days of limited sleep is more wearing than I expected. What am I ever going to do when I have kids! Nurses just came in. I will come back later.
Andrew ended up coming to town today to drop off Thanksgiving dinner to my family and to give me a break from the hospital for a night. As tired as I was, I felt so happy to share Thanksgiving dinner with my new husband. I am so lucky.
Since today is Thanksgiving I thought I would end this entry with some things I am thankful for:
1. My husband. He is the most giving, huge-hearted person I know. I am thankful for how he unconditionally loves me no matter what. He simply makes my life better. Thank you Andrew for being you.
2. My mom. She has taught me to always do the right thing and for raising us to be good people. I have always admired her courage and giving nature. I don't know what I would do without her. Thank you, Mom, for fighting for us.
3. My dad. He has taught me to always look at the bright side of things. Thank you Dad for opening up the world for me.
4. My sister. She has such a zest for life and consistently impresses me with her strength and insight. Thank you Mandi, for being my best friend.
5. My family. I am thankful I have such a loving, kind, close family. It makes me proud to belong to the Sweets, Golmans, Sepulvedas, and now Duhans.
6. My friends. I am so, so thankful to have such interesting, caring, smart, funny and giving friends, who are ALWAYS there for me. Thanks for giving me the strength and support I need right now.
7. My life. I am thankful to be alive and well.
So, this morning the doctors came in to tell us her wbc levels were at .3. She seemed to be doing okay last night and early this morning. She was able to go to the bathroom and walk around a little. It wasn't until this afternoon that the crash began. I noticed her face became completely white, her eyes look sunken, and her energy level was extremely low. Fortunately, she is still able to talk and joke with me some.
The doctor mentioned that she doesn't really need a transfusion at this point, but will probably need one tomorrow. She also mentioned that if she feels dizzy at all, we need to order one. She reminded my mom of the fainting spell during chemo last week ( my mom neglected to mention this to me)! I learned she fainted in the bathroom and thank goodness Tim caught her. I can't get the image out of my head. It is the absolute worst feeling I think I've ever had to think of my mom, who has always taken care of me and been the strong one, so weak and helpless. Ugh. Can't even write about it.
Moving on. I am extremely exhausted today. Three days of limited sleep is more wearing than I expected. What am I ever going to do when I have kids! Nurses just came in. I will come back later.
Andrew ended up coming to town today to drop off Thanksgiving dinner to my family and to give me a break from the hospital for a night. As tired as I was, I felt so happy to share Thanksgiving dinner with my new husband. I am so lucky.
Since today is Thanksgiving I thought I would end this entry with some things I am thankful for:
1. My husband. He is the most giving, huge-hearted person I know. I am thankful for how he unconditionally loves me no matter what. He simply makes my life better. Thank you Andrew for being you.
2. My mom. She has taught me to always do the right thing and for raising us to be good people. I have always admired her courage and giving nature. I don't know what I would do without her. Thank you, Mom, for fighting for us.
3. My dad. He has taught me to always look at the bright side of things. Thank you Dad for opening up the world for me.
4. My sister. She has such a zest for life and consistently impresses me with her strength and insight. Thank you Mandi, for being my best friend.
5. My family. I am thankful I have such a loving, kind, close family. It makes me proud to belong to the Sweets, Golmans, Sepulvedas, and now Duhans.
6. My friends. I am so, so thankful to have such interesting, caring, smart, funny and giving friends, who are ALWAYS there for me. Thanks for giving me the strength and support I need right now.
7. My life. I am thankful to be alive and well.
Wednesday, November 25, 2009
Day + 2
Last night I fell asleep with thoughts about what would happen if this doesn't work. And what if it comes back next year. And what if one cancerous cell slipped through. And how long will it take for her to feel normal. And how do you even live a "normal" life with the thought of relapse. I wish I can let go of these thoughts and focus on simply getting through this. They just keep creeping in.
I resigned to begin the day more positively this morning. It's imperative to for my sanity and for my mom's recovery. My sleep last night was better but still broken. My favorite night nurse took care of us. He is OCD like me and cleaned the entire room and checked every detail of my mom's records/vitals. He also gave us some great tips on good exercises for her while she's in bed. Unfortunately, I pried a little too far into the treatment of the patients a couple rooms over and learned that they are both being quarantined due to serious infections. We have noticed that the rooms (about 3 rooms down) have bright green papers ont he door and the nurses don't enter unless dressed in gowns and gloves. Doctors have been crowding around the rooms during their rounds for longer than usual. So, I tactfully asked our nurse about it. According to HIPPA laws, he couldn't say much but generally mentioned that one has the flu and the other has some bacterial infection that causes diarrhea. This is pretty scary since they have the same nursing staff as my mom during the most vulnerable time for her. This has haunted us all day. Think positively, right?
Back to the day... My mom woke up with a decent amount of energy today. I got to go home for a few hours to shower, do some laundry and regroup while Tim stayed with my mom. It was strangely difficult to be home. I worried about her the whole time and felt that I was cheating or something. When I got back, my mom was able to eat a greek yogurt and a couple lemon popsicles. It is all she can tolerate at this point. This evening we took two trips down the hallway. We took the IV cart with us, which I now affectionately call her octopus (it has 8 wheels). She was completely worn out by the time we got back. She later confessed that she really had to work to get back. Her white blood counts are .6 this morning (healthy people will have a million wbc). They are suppose to drop to 0. Her doctor thinks they will be at .1 tomorrow, which will be pretty close to bottom. They plan on giving her a nuepogen shot tomorrow morning which will help the count climb over the next 10 days.. that sounds so impossibly far off.
I am pretty exhausted at this point, so I don't have much energy to finish this. I hope to continue tomorrow. I notice if we keep a routine, the day goes by a bit easier. I think I will try to blog in the morning from now on.
Back to my bench for another night of napping.
I resigned to begin the day more positively this morning. It's imperative to for my sanity and for my mom's recovery. My sleep last night was better but still broken. My favorite night nurse took care of us. He is OCD like me and cleaned the entire room and checked every detail of my mom's records/vitals. He also gave us some great tips on good exercises for her while she's in bed. Unfortunately, I pried a little too far into the treatment of the patients a couple rooms over and learned that they are both being quarantined due to serious infections. We have noticed that the rooms (about 3 rooms down) have bright green papers ont he door and the nurses don't enter unless dressed in gowns and gloves. Doctors have been crowding around the rooms during their rounds for longer than usual. So, I tactfully asked our nurse about it. According to HIPPA laws, he couldn't say much but generally mentioned that one has the flu and the other has some bacterial infection that causes diarrhea. This is pretty scary since they have the same nursing staff as my mom during the most vulnerable time for her. This has haunted us all day. Think positively, right?
Back to the day... My mom woke up with a decent amount of energy today. I got to go home for a few hours to shower, do some laundry and regroup while Tim stayed with my mom. It was strangely difficult to be home. I worried about her the whole time and felt that I was cheating or something. When I got back, my mom was able to eat a greek yogurt and a couple lemon popsicles. It is all she can tolerate at this point. This evening we took two trips down the hallway. We took the IV cart with us, which I now affectionately call her octopus (it has 8 wheels). She was completely worn out by the time we got back. She later confessed that she really had to work to get back. Her white blood counts are .6 this morning (healthy people will have a million wbc). They are suppose to drop to 0. Her doctor thinks they will be at .1 tomorrow, which will be pretty close to bottom. They plan on giving her a nuepogen shot tomorrow morning which will help the count climb over the next 10 days.. that sounds so impossibly far off.
I am pretty exhausted at this point, so I don't have much energy to finish this. I hope to continue tomorrow. I notice if we keep a routine, the day goes by a bit easier. I think I will try to blog in the morning from now on.
Back to my bench for another night of napping.
Day +1
So last night and today were difficult to say the least. My mom was doing well last night until about 2am. She started getting a bit nauseated and weak and was unable to sleep. The nurses come in once to twice an hour ALL day and night to check vitals and run fluids/antibiotics. The creaking and movement on this floor adds to the "never able to rest" issue. It definitely wore on me today. This morning the team of oncologists came in lead by Dr. V at around 7. They just looked her over, went through her bloodwork, and told us to hang in there. Her blood levels haven't dropped too much, so there would be no need for a transfusion today. She said to expect one this Thursday, when things supposedly come crashing down (Day +3). The anticipation is draining for my mom, I can tell. I try not to talk about it too much, but we know it is there.
After the doctors left, I think we got a little sleep. Maybe an hour? Then we both woke up and decided to try some food. This turned out to be the worst idea of the day. My mom ate a tiny bite of eggs and a bite of banana. Then she swished her mouth out with some horribly flavored goo that is suppose to prevent mouth sores. Almost a minute later a wave of nausea, dizziness, and the shakes washed over her. I immediately ordered some anti-nausea meds, which the nurse administered in about 2 minutes. This helped relieve some of the nausea, but not the shakes. They checked her blood pressure which dropped. They attributed it to dehydration and hooked her up to some more fluids. She slowly began to feel better but just had absolutely no energy. She couldn't even lift her head. At this point I felt helpless. It's so hard to see someone you love so much suffer and there is nothing you can do. I really know that things will get better, it's just hard to see the end when it's begun so difficultly. I think the lack of sleep doesn't help.
I never want to complain, because I can't imagine a place I'd rather be right now. However, it helps to vent and chronicle this experience, so I will a little. First of all, the nurse staff is beyond competent and amazing. It is such a relief not to have to deal with worrying about her care when I'm tired and emotionally drained. The room on the other hand leaves a lot to be desired. I am sleeping on a bench similar to one you would find in a diner. The bathroom is way down the hall through two sets of double doors. It is pretty disgusting. I can't use my mom's because they measure everything. It's become a pain (as much water as I drink) to trek down the hall to pee! The room here doesn't seem as clean as a hospital should be either. It took them almost 24 hours to clean the blood spill from yesterday. Found that a little strange. It really grosses me out, because I'm such a neurotically clean person. Humans are so adaptable, I think you can get use to just about anything over time. Plus, they told us they have just completed 500 stem cell transplants since they've began, so I guess they know what they are doing.
This wing of the hopsital consists of about 10 rooms. Every room has the patient's day of treatment listed on the door. My mom is Day +1. Her neighbor is Day +8... oh how I wish we were there. Thinking about being here for at least 2 weeks is a bit overwhelming at this point. One patient went home today after Day +15 and the old man at Day +10 looks great as he trekked down the hall, IV bag in tow. My mom hasn't been able to move around the room too much. I am being a bit strict about making her do arm exercises in bed to counter her inactivity. She will get annoyed with me in 2 weeks, I'm certain.
Well, I hope for a better day tomorrow but am prepared for a bunch more hard ones. We are forging ahead, xing out each day of the calendar as we go.
Sleepy but determined,
Staci
After the doctors left, I think we got a little sleep. Maybe an hour? Then we both woke up and decided to try some food. This turned out to be the worst idea of the day. My mom ate a tiny bite of eggs and a bite of banana. Then she swished her mouth out with some horribly flavored goo that is suppose to prevent mouth sores. Almost a minute later a wave of nausea, dizziness, and the shakes washed over her. I immediately ordered some anti-nausea meds, which the nurse administered in about 2 minutes. This helped relieve some of the nausea, but not the shakes. They checked her blood pressure which dropped. They attributed it to dehydration and hooked her up to some more fluids. She slowly began to feel better but just had absolutely no energy. She couldn't even lift her head. At this point I felt helpless. It's so hard to see someone you love so much suffer and there is nothing you can do. I really know that things will get better, it's just hard to see the end when it's begun so difficultly. I think the lack of sleep doesn't help.
I never want to complain, because I can't imagine a place I'd rather be right now. However, it helps to vent and chronicle this experience, so I will a little. First of all, the nurse staff is beyond competent and amazing. It is such a relief not to have to deal with worrying about her care when I'm tired and emotionally drained. The room on the other hand leaves a lot to be desired. I am sleeping on a bench similar to one you would find in a diner. The bathroom is way down the hall through two sets of double doors. It is pretty disgusting. I can't use my mom's because they measure everything. It's become a pain (as much water as I drink) to trek down the hall to pee! The room here doesn't seem as clean as a hospital should be either. It took them almost 24 hours to clean the blood spill from yesterday. Found that a little strange. It really grosses me out, because I'm such a neurotically clean person. Humans are so adaptable, I think you can get use to just about anything over time. Plus, they told us they have just completed 500 stem cell transplants since they've began, so I guess they know what they are doing.
This wing of the hopsital consists of about 10 rooms. Every room has the patient's day of treatment listed on the door. My mom is Day +1. Her neighbor is Day +8... oh how I wish we were there. Thinking about being here for at least 2 weeks is a bit overwhelming at this point. One patient went home today after Day +15 and the old man at Day +10 looks great as he trekked down the hall, IV bag in tow. My mom hasn't been able to move around the room too much. I am being a bit strict about making her do arm exercises in bed to counter her inactivity. She will get annoyed with me in 2 weeks, I'm certain.
Well, I hope for a better day tomorrow but am prepared for a bunch more hard ones. We are forging ahead, xing out each day of the calendar as we go.
Sleepy but determined,
Staci
Day 0
I guess this blog is more for me to get my thoughts/feelings/events down. It's kind of cathartic.
So, today was insane! First, my flight into Dallas was delayed by heavy fog. After considering driving and paying for a new ticket to another airport, I luckily arrived to Love Field 10 minutes before transplant time. As I lugged my belongings (enough to last me three weeks) down the narrow hallway full of cancer patients and doctors, I spotted my mom's oncologist. She says, "you are just in time" and pointed behind me. My mom's stem cells were being wheeled down the hall in a gigantic vault!! We ended up entering her room at the same time.
The transplant began with tons of nerves and excitement. The cells were cryogenically frozen in eight small IV bags stored in small envelope sized boxes. Each bag was scheduled to take 15 minutes. The whole procedure began at 11:00 and ended at 4:00. We were warned that the stem cells would smell like creamed corn, and I can guarantee you I will NEVER eat that again (not that I ever really did). The first 3 bags went smoothly. Each took about 20 minutes. My mom felt good throughout this whole part. Then... the fourth bag. The nurse tried to unhook the IV port that feeds into my mom's port and realized it was stuck! The nurses fidgeted with it for 5 of the longest minutes of the day and once they realized it was broken, I ran to get Dr. V. She advised that we drain it into and a syringe, however, there were still stem cells in the line. They tried the best they could to drain the line back into the IV bag before they stuck in the syringe. As the Ann Gohl, the nurse from Carter Blood Center began, I heard an "oh no!" I jumped up to see what happened and just as I got to the bag, the blood and cells flung all over the floor. I tried to grab the line that was still draining out when Ann somehow pinched it off. I think we lost about a shot worth of blood. I ran back to ask Dr. V. if this was okay and she assured me that there are millions of stem sells left so we wouldn't need to worry. I think my heart froze. And my poor mom's face! I am still shaken from the experience. I guess time will tell if the extra cells matter or if they were contaminated. My mom says there is nothing we can do now. The crazy thing is that I asked Dr. V about this very incident before we signed any papers initiating the process. She told me a story about one of her years in medical school when a bag broke and landed all over the floor. She said they just scooped it up, sterilized it, and IVed it back in the patient's body. The patient was fine. So, this has been a running joke in our family. I can't believe it actually happened!!
The final 4 bags went smoothly. We all cried and thanked life. She is on the road to recovery. She is extremely exhausted but has so much fight in her. The doctor says that in about 3 days she will feel like she was hit by a truck. Then she gets her white blood cell shot and her levels should start to recover about 14 days later.
The nurse just checked her vitals which are all strong. She is resting now (it's 5:30) from all the benedryl, antibiotics, antivirals, and anti-nausea meds pumped into her. Glad the day is coming to an end and tomorrow will begin the plus days!
So, today was insane! First, my flight into Dallas was delayed by heavy fog. After considering driving and paying for a new ticket to another airport, I luckily arrived to Love Field 10 minutes before transplant time. As I lugged my belongings (enough to last me three weeks) down the narrow hallway full of cancer patients and doctors, I spotted my mom's oncologist. She says, "you are just in time" and pointed behind me. My mom's stem cells were being wheeled down the hall in a gigantic vault!! We ended up entering her room at the same time.
The transplant began with tons of nerves and excitement. The cells were cryogenically frozen in eight small IV bags stored in small envelope sized boxes. Each bag was scheduled to take 15 minutes. The whole procedure began at 11:00 and ended at 4:00. We were warned that the stem cells would smell like creamed corn, and I can guarantee you I will NEVER eat that again (not that I ever really did). The first 3 bags went smoothly. Each took about 20 minutes. My mom felt good throughout this whole part. Then... the fourth bag. The nurse tried to unhook the IV port that feeds into my mom's port and realized it was stuck! The nurses fidgeted with it for 5 of the longest minutes of the day and once they realized it was broken, I ran to get Dr. V. She advised that we drain it into and a syringe, however, there were still stem cells in the line. They tried the best they could to drain the line back into the IV bag before they stuck in the syringe. As the Ann Gohl, the nurse from Carter Blood Center began, I heard an "oh no!" I jumped up to see what happened and just as I got to the bag, the blood and cells flung all over the floor. I tried to grab the line that was still draining out when Ann somehow pinched it off. I think we lost about a shot worth of blood. I ran back to ask Dr. V. if this was okay and she assured me that there are millions of stem sells left so we wouldn't need to worry. I think my heart froze. And my poor mom's face! I am still shaken from the experience. I guess time will tell if the extra cells matter or if they were contaminated. My mom says there is nothing we can do now. The crazy thing is that I asked Dr. V about this very incident before we signed any papers initiating the process. She told me a story about one of her years in medical school when a bag broke and landed all over the floor. She said they just scooped it up, sterilized it, and IVed it back in the patient's body. The patient was fine. So, this has been a running joke in our family. I can't believe it actually happened!!
The final 4 bags went smoothly. We all cried and thanked life. She is on the road to recovery. She is extremely exhausted but has so much fight in her. The doctor says that in about 3 days she will feel like she was hit by a truck. Then she gets her white blood cell shot and her levels should start to recover about 14 days later.
The nurse just checked her vitals which are all strong. She is resting now (it's 5:30) from all the benedryl, antibiotics, antivirals, and anti-nausea meds pumped into her. Glad the day is coming to an end and tomorrow will begin the plus days!
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