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.
Friday, November 27, 2009
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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