Thursday of last week my mom came home from UCSF. Her numbers went up exponentially from Wednesday to Thursday (from 10 to 67 on platelet count, for example). She got the OK to come home. She was so excited.
In the hospital, she was expected to get at least a minimum of 1,000 calories a day, which she was barely hitting. At home, however, she's a champ. I bet she's getting 1,000 calories at breakfast. Now that she can control what she eats and eats what she wants, she's doing much better. She's been getting back in the grind slowly, with lots of breaks in between.
My kids decided to go and get sick this week with some respiratory virus and so it will be a while before I get to see her. I'm bummed, but more that my kids are sick with no end in sight.
Showing posts with label UCSF. Show all posts
Showing posts with label UCSF. Show all posts
Tuesday, February 18, 2014
Sunday, February 9, 2014
Halfway point
This Thursday, the 6th, my mom reached her halfway point or the lowest point, depending on how you look at it.
She is halfway through her stay at UCSF. She'll likely come home by Valentine's Day even though she'll feel lousy. Her numbers will be near normal or better than they were upon her entry, but her body will not feel like it's ready to go.
Her platelets and hematocrit were near zero on Thursday and Friday. On Friday she received two units of blood and one unit of platelets on Saturday. She had been doing well until then, walking one to two miles a day around the halls. Then she was hit with all of the expected side effects. The nausea has been particularly bad as the levels have dropped. On Saturday morning the nurses gave her a different, stronger anti-nausea drug. It made her so groggy that she couldn't stay awake long enough to eat much.
My dad and I drove up on Saturday to visit, but considering the side effects my mom couldn't converse with us. So instead my dad and I teased her a bit, otherwise we read the day-old SF Chronicle and watched some lame program on Animal Planet.
My poor mom kept apologizing to us, which is about all she could do. Although it was a bit of a wash, it was nice to lay eyes on her.
It'll be much easier when she gets home. She won't feel great, but she'll be at home.
She is halfway through her stay at UCSF. She'll likely come home by Valentine's Day even though she'll feel lousy. Her numbers will be near normal or better than they were upon her entry, but her body will not feel like it's ready to go.
Her platelets and hematocrit were near zero on Thursday and Friday. On Friday she received two units of blood and one unit of platelets on Saturday. She had been doing well until then, walking one to two miles a day around the halls. Then she was hit with all of the expected side effects. The nausea has been particularly bad as the levels have dropped. On Saturday morning the nurses gave her a different, stronger anti-nausea drug. It made her so groggy that she couldn't stay awake long enough to eat much.
My dad and I drove up on Saturday to visit, but considering the side effects my mom couldn't converse with us. So instead my dad and I teased her a bit, otherwise we read the day-old SF Chronicle and watched some lame program on Animal Planet.
My poor mom kept apologizing to us, which is about all she could do. Although it was a bit of a wash, it was nice to lay eyes on her.
It'll be much easier when she gets home. She won't feel great, but she'll be at home.
Friday, January 24, 2014
Transplant update
No news is good news, right? My mom hasn't yet been called about coming back up to UCSF for transplant. She wants to get it over with, but at the same time it'll be a pretty lousy few weeks.
She's healing well--the blood counts are up. She's still not heading out to the grocery store or running out to Costco. She's been busy sewing and coming up with craft projects. She's taking daily two-mile walks and trying her best to make this time at home as normal as possible.
Interestingly, a family friend who also has Multiple Myeloma and is getting ready for transplant at UCSF mentioned to the doctor this week that he knows of 8! people in Hollister with Multiple Myeloma--that is 8 people he has met. What if there are others?
While we know that this is an environmental cancer (not genetic), why have there been no studies done on its origin? As my mom and I were discussing this she made an excellent point: "Do I want the doctors who treat me to spend money to find out how to cure me or where the cancer comes from? I chose cure me." I certainly can't argue with that.
She's healing well--the blood counts are up. She's still not heading out to the grocery store or running out to Costco. She's been busy sewing and coming up with craft projects. She's taking daily two-mile walks and trying her best to make this time at home as normal as possible.
Interestingly, a family friend who also has Multiple Myeloma and is getting ready for transplant at UCSF mentioned to the doctor this week that he knows of 8! people in Hollister with Multiple Myeloma--that is 8 people he has met. What if there are others?
While we know that this is an environmental cancer (not genetic), why have there been no studies done on its origin? As my mom and I were discussing this she made an excellent point: "Do I want the doctors who treat me to spend money to find out how to cure me or where the cancer comes from? I chose cure me." I certainly can't argue with that.
Friday, January 17, 2014
Waiting for transplant
My mom was able to harvest 6.5 MILLION stem cells! The body is an amazing thing. |
| Pre-haircut powwow |
On Wednesday night Samantha started crying during dinner. She was having a difficult time just knowing that my mom was at UCSF. I think a lot of it had to do with not being able to see her and touch her. So I texted my mom and asked that she send us a picture. Samantha's spirits perked right up once that picture of my mom came through.
Thursday was the first day in over a week that my parents didn't have to drive up to San Francisco. They slept in! My mom asked if Samantha would be willing to skip ballet that day--her hair was falling out and it wasn't going to wait.
I took the kids to my parents house to give my mom a Mohawk. Then they shaved her head. She thought it might be easier on the kids--she was right.
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| Samantha's turn |
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| Alyssa's turn (with Papa's help) |
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| Lovingly--my dad cutting my mom's hair |
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| Gel! |
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| Touching Gammy's buzzed head! |
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| My girls and my beautiful mom! |
Tuesday, January 14, 2014
January 14, Day 13, stem cell collection
Today is stem cell collection day!
Yesterday my mom got the catheter (port/pick line) in her neck. She said it felt like she hurt her neck and couldn't move it real well. I fully expected her to have a restless night's sleep, but she proved me wrong again.
It was a long day yesterday. My parents had to check in at 10 and wait for her scheduled catheter placement at 1, but it was between 2 and 3 when she finally went in. Placement took about an hour and then she had to go back to clinic for her Neupogen shot. All in all it was about 7.5 hours in the hospital/clinic yesterday. That, of course, doesn't include the drive up to and back from SF.
Yesterday I made stew for my family and had plenty to share, for which I was so grateful. I was able to send a pot home with my dad after their long day. I think it was about 7:30 when they finally made it home.
When I am home, working and being a mom, it's hard on me. I'm constantly wondering what is going on with my parents. I wonder how she feels, what she needs, etc. So making sure they had dinner alleviated some of my anxiety, knowing that they had one less thing to worry about.
Today they were off again, extra early, to check in. Unfortunately, the collection area is set up much like an outpatient recover room, so my dad couldn't stay there, but he could come and visit for short periods. Apherisis is only about 3-3.5 hours, so they were done around lunch. Then came the waiting . . . a few hours to determine if they had enough cells. My mom gave 4.5 MILLION cells today! Unfortunately, it wasn't quite enough and she has to go back and do it again tomorrow. One more day . . .
She had to have a blood transfusion today to help her make the remainder of the stem cell count for tomorrow. She'll have to get the catheter out and then she'll be done for a while. The nurses were so nice--they could tell my dad was exhausted (and he's the one who drives home) so they set up a private room so he could nap.
It's been a very long day and tomorrow will be just as long. I wish I could take away the wait, the worry, the exhaustion . . . But she's almost there.
Yesterday my mom got the catheter (port/pick line) in her neck. She said it felt like she hurt her neck and couldn't move it real well. I fully expected her to have a restless night's sleep, but she proved me wrong again.
It was a long day yesterday. My parents had to check in at 10 and wait for her scheduled catheter placement at 1, but it was between 2 and 3 when she finally went in. Placement took about an hour and then she had to go back to clinic for her Neupogen shot. All in all it was about 7.5 hours in the hospital/clinic yesterday. That, of course, doesn't include the drive up to and back from SF.
Yesterday I made stew for my family and had plenty to share, for which I was so grateful. I was able to send a pot home with my dad after their long day. I think it was about 7:30 when they finally made it home.
When I am home, working and being a mom, it's hard on me. I'm constantly wondering what is going on with my parents. I wonder how she feels, what she needs, etc. So making sure they had dinner alleviated some of my anxiety, knowing that they had one less thing to worry about.
Today they were off again, extra early, to check in. Unfortunately, the collection area is set up much like an outpatient recover room, so my dad couldn't stay there, but he could come and visit for short periods. Apherisis is only about 3-3.5 hours, so they were done around lunch. Then came the waiting . . . a few hours to determine if they had enough cells. My mom gave 4.5 MILLION cells today! Unfortunately, it wasn't quite enough and she has to go back and do it again tomorrow. One more day . . .
She had to have a blood transfusion today to help her make the remainder of the stem cell count for tomorrow. She'll have to get the catheter out and then she'll be done for a while. The nurses were so nice--they could tell my dad was exhausted (and he's the one who drives home) so they set up a private room so he could nap.
It's been a very long day and tomorrow will be just as long. I wish I could take away the wait, the worry, the exhaustion . . . But she's almost there.
Wednesday, January 8, 2014
January 8--day 7 (last day out)
Today is the last day my mom will be able to eat out, go to the store, generally be in public for the next few months. Tomorrow her counts should drop too low to provide much protection.
Today is the second Neupogen shot. She learned last night that she may not need all 6 or 7 shots. It depends on how her blood work looks on Friday. If the counts are unstable, meaning too many white blood cells, then they'd stop because it could be risky to the patient. That doesn't mean she would get the catheter and apheresis earlier. She'd just get to stay home for a couple of days.
If I didn't mention it before, the catheter or pick line, is direct access to her blood. Last time she had one in her chest for several months. They used it for chemotherapy, apheresis, and any other drip/infusion she had to have. This time they'll put the catheter in her neck. Highly uncomfortable, but only required for apheresis this time.
Yesterday she spoke to a man who had had his catheter in only one day. UCSF was able to collect all the stem cells needed for his transplant in one day. Amazing!
The reason UCSF uses the neck is so that they have access to the jugular vein--the big one. This makes it easier to extract the blood. However, the patient cannot shower while the catheter is in. The patient is highly susceptible to infection, unlike with the catheter in the chest. Considering that the neck catheter is only in for a few days this should be manageable.
Sometime this weekend I'll give my dad a break and drive my mom up to UCSF so that I can see where she will be, meet the nurses, etc. I was so much more involved last time, but then again I didn't have two little girls.
I am so grateful to all the scientists, medical personnel, doctors, and brilliant people who discovered stem cell transplantation and those who work in the field today. My mom would not be alive today had this not been an option. And she would not have met my two beautiful girls who love their Gammy more than words can say. She's taught them so much as I'm sure they've taught her. So . . . THANK YOU!
Today is the second Neupogen shot. She learned last night that she may not need all 6 or 7 shots. It depends on how her blood work looks on Friday. If the counts are unstable, meaning too many white blood cells, then they'd stop because it could be risky to the patient. That doesn't mean she would get the catheter and apheresis earlier. She'd just get to stay home for a couple of days.
If I didn't mention it before, the catheter or pick line, is direct access to her blood. Last time she had one in her chest for several months. They used it for chemotherapy, apheresis, and any other drip/infusion she had to have. This time they'll put the catheter in her neck. Highly uncomfortable, but only required for apheresis this time.
Yesterday she spoke to a man who had had his catheter in only one day. UCSF was able to collect all the stem cells needed for his transplant in one day. Amazing!
The reason UCSF uses the neck is so that they have access to the jugular vein--the big one. This makes it easier to extract the blood. However, the patient cannot shower while the catheter is in. The patient is highly susceptible to infection, unlike with the catheter in the chest. Considering that the neck catheter is only in for a few days this should be manageable.
Sometime this weekend I'll give my dad a break and drive my mom up to UCSF so that I can see where she will be, meet the nurses, etc. I was so much more involved last time, but then again I didn't have two little girls.
* * *
I am so grateful to all the scientists, medical personnel, doctors, and brilliant people who discovered stem cell transplantation and those who work in the field today. My mom would not be alive today had this not been an option. And she would not have met my two beautiful girls who love their Gammy more than words can say. She's taught them so much as I'm sure they've taught her. So . . . THANK YOU!
Thursday, January 2, 2014
January 2--start chemotherapy
January 2, 2014
My mom and dad headed up to UCSF today for Cytoxan, the chemotherapy drug that will start the transplant process. My parents stayed up there for most of the day while they infused the drug along with saline. This particular chemotherapy drug is tough on the kidneys. My mom will need to drink 2 liters of water a day for the next two days to flush her kidneys. If she cannot then she'll have to go back up to UCSF to be admitted. (She's been practicing--that is a lot of water.)
Unlike the last transplant (10 years ago), we texted throughout the day. If she was sleeping, my dad texted; if my mom was awake then she texted. She ate well and was not nauseated. She said that she felt woozy, but otherwise okay.
Thankfully my mom kept meticulous notes on the treatment last time and notified the nurses that either the anti-nausea drug or the Cytoxan gave her the "worst headache of her life." I took the same anti-nausea drug during both my pregnancies and not once did it give me headaches. We talked and determined it was likely the Cytoxan. So the nurses were prepared. They wanted to keep her comfortable. So my mom had some caffeine via coffee (not a drip). It seemed to help. She is dealing with a reasonable headache. (Yay, for small victories!)
This time my mom received a medication to help with the after-effects of the chemotherapy. She received a drip earlier tonight and will take pills for the next dose--they're to lessen the effects of the drug from bone pain to sickness to anything else.
It's amazing how far stem-cell transplantation has come in the last ten years!
And . . . I must admit that being able to text throughout the day helped me cope while she was 90 miles away in the hospital.
My mom and dad headed up to UCSF today for Cytoxan, the chemotherapy drug that will start the transplant process. My parents stayed up there for most of the day while they infused the drug along with saline. This particular chemotherapy drug is tough on the kidneys. My mom will need to drink 2 liters of water a day for the next two days to flush her kidneys. If she cannot then she'll have to go back up to UCSF to be admitted. (She's been practicing--that is a lot of water.)
Unlike the last transplant (10 years ago), we texted throughout the day. If she was sleeping, my dad texted; if my mom was awake then she texted. She ate well and was not nauseated. She said that she felt woozy, but otherwise okay.
Thankfully my mom kept meticulous notes on the treatment last time and notified the nurses that either the anti-nausea drug or the Cytoxan gave her the "worst headache of her life." I took the same anti-nausea drug during both my pregnancies and not once did it give me headaches. We talked and determined it was likely the Cytoxan. So the nurses were prepared. They wanted to keep her comfortable. So my mom had some caffeine via coffee (not a drip). It seemed to help. She is dealing with a reasonable headache. (Yay, for small victories!)
This time my mom received a medication to help with the after-effects of the chemotherapy. She received a drip earlier tonight and will take pills for the next dose--they're to lessen the effects of the drug from bone pain to sickness to anything else.
It's amazing how far stem-cell transplantation has come in the last ten years!
And . . . I must admit that being able to text throughout the day helped me cope while she was 90 miles away in the hospital.
Wednesday, January 1, 2014
January 1, 2014 . . . I spent this afternoon sewing curtains for my house with my mom. It was nice and bittersweet. Tomorrow she heads off to UCSF to get her first dose of chemotherapy. In a couple of weeks she'll lose her hair and in a month she'll have a stem-cell transplant.
It's rough for all of us. Right now she's fairly healthy, tomorrow she won't be.
My girls spent a few minutes getting in last minute hugs. They know that they won't be able to see her for a while. It's especially difficult because we live around the corner from her--literally four houses away.
Technology, however, will be our saving grace. We'll be trying to FaceTime with her as much as we can from UCSF or from our home to hers.
I'm so thankful for medical advances--she can use her own cells to save herself. But I can't still the worry/anxiety/sadness that I feel. I can see it in my dad's eyes when he looks away or tries to casually clear his throat or looks at me with red eyes.
Cancer sucks.
It's rough for all of us. Right now she's fairly healthy, tomorrow she won't be.
My girls spent a few minutes getting in last minute hugs. They know that they won't be able to see her for a while. It's especially difficult because we live around the corner from her--literally four houses away.
Technology, however, will be our saving grace. We'll be trying to FaceTime with her as much as we can from UCSF or from our home to hers.
I'm so thankful for medical advances--she can use her own cells to save herself. But I can't still the worry/anxiety/sadness that I feel. I can see it in my dad's eyes when he looks away or tries to casually clear his throat or looks at me with red eyes.
Cancer sucks.
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