Last night, Manisha and family treated us to pizza for dinner. It was *so* nice not to have to think about preparing food and to just be able to relax and enjoy the fam a little. Because I wasn't in the kitchen, that meant that Will got to bed early and we had more time for other things.
Mom gave herself her haircut last night, a buzz cut so that she doesn't have to deal with her hair falling out in clumps. Apparently, it's also painful for some people, so she can avoid that, too. It was kind of neat. She set up a table on the deck and used a jar to hold a mirror. I went out there to be her eyes and tell her what I saw on the back of her head. Mom says that she sees why guys wear their hair that way because it is so cool and comfortable. Apparently the damp rag after the haircut felt pretty darn good. Mom has a variety of head wraps, one wig and a second one on the way. She put on a head wrap last night and it looked super cute. Emily Allen, our friend and very talented stylist (Carmen! Carmen! Salon) is going to help her trim up her wigs so that they are just right for her.
After Mom's haircut, Allen and I got to watch the season finale of Drop Dead Diva. It came on Sunday night but we were too tired from the day to watch it. It was a two hour special and probably one of the best season finales I've ever seen, though I can't believe we have to wait several months to find out what happens. LOL!
This morning, I've been lazy. I woke up around 7:45 and just fired up the laptop and tried to catch up on a few emails (I'm soooo behind!). I think I am declaring this my pj's day unless anything unexpected happens. I hear Squirt talking to his stuffed animals and laughing in his room, so I'll just take a quick shower, throw on some pj's and spend the morning in front of the tv with him. Seems like a good time to kick back. :-)
Mom starts her Neupogen shots today. This is the medication that prepares her for having her stem cells filtered out during apheresis next week. The medication can make her feel like she has the flu and make it difficult to sleep, but we won't know how it affects her until she takes her first dose. So far, Mom hasn't had awful side effects from medications, so perhaps she will luck out with this one, too.
Tuesday, August 31, 2010
Monday, August 30, 2010
Adventures in Blood Work
This morning, Mom, Will and I headed over to NorthEast hospital for Mom to get her blood work done. At first, they wanted to take the blood from her arm, but Mom wanted them to take it from her central line (Hickman) instead, in order to reduce chance of infection. They called someone from the IV team to come down to the lab to help. They were able to get the lab work, but part of her Hickman is clogged with a blood clot. NorthEast placed a call over to Duke to find out what to do and we waited, and waited and waited.
We thought this was going to be a short visit, so were totally unprepared. Mom left her notebook at home. I didn't bring the diaper bag, Will's toys or his little potty chair. His sippy cup was in the car. He was thirsty, hungry and didn't know what to do with his energy.
Finally, we all ended up going to the cafeteria to grab a bite while we waited for Duke to call back. That was great because he finally got a giant bottle of water and some food. He could be a little noisy, run around a bit or climb up and down off the chairs at the table.
Eventually, we headed back to the lab only to find out they still hadn't found out anything. We hadn't heard anything on my cell either. Mom got out her phonebook and made a call to the nurse in charge of her case in the clinical trial. The nurse called another nurse over at the bone marrow transplant center, who called us back on my phone. She said to go home and then to see if it's still clogged on Wednesday. If it is, the clog will be addressed on that day instead of today. I hope that all works out because Will is set to start the very first day of his music class that day at 11:30. Sounds like we'll have to start out early in the morning to make sure. So anyway, after four hours of waiting around, we finally got to go home.
I'm going to grab a nap until Allen gets home. Our sweet friend Manisha is getting dinner for us tonight (thank you!) so we won't have to think about that tonight and that will make life easier. I look forward to putting my feet up a little. :-)
We thought this was going to be a short visit, so were totally unprepared. Mom left her notebook at home. I didn't bring the diaper bag, Will's toys or his little potty chair. His sippy cup was in the car. He was thirsty, hungry and didn't know what to do with his energy.
Finally, we all ended up going to the cafeteria to grab a bite while we waited for Duke to call back. That was great because he finally got a giant bottle of water and some food. He could be a little noisy, run around a bit or climb up and down off the chairs at the table.
Eventually, we headed back to the lab only to find out they still hadn't found out anything. We hadn't heard anything on my cell either. Mom got out her phonebook and made a call to the nurse in charge of her case in the clinical trial. The nurse called another nurse over at the bone marrow transplant center, who called us back on my phone. She said to go home and then to see if it's still clogged on Wednesday. If it is, the clog will be addressed on that day instead of today. I hope that all works out because Will is set to start the very first day of his music class that day at 11:30. Sounds like we'll have to start out early in the morning to make sure. So anyway, after four hours of waiting around, we finally got to go home.
I'm going to grab a nap until Allen gets home. Our sweet friend Manisha is getting dinner for us tonight (thank you!) so we won't have to think about that tonight and that will make life easier. I look forward to putting my feet up a little. :-)
Sunday, August 29, 2010
Mom is Home
Allen, Will and I left this morning around 9:00 Eastern, stopped to gas up, picked up a couple things from Food Lion, grabbed some breakfast and hit the road. It was nearly 11:30 when we got to the Duke bone marrow transplant clinic. Dale came out to the parking deck so that we could unload Mom's belongings from his car to ours. Mom was still waiting to get blood drawn, so we went to entertain Will for a few hours. He is not allowed in the bone marrow transplant clinic.
Everyone raved about the Duke gardens, so we set out to find them. We found a school building with Internet access, so fired up my laptop and got directions. Google sent us to the Duke police department. Go figure! We found a parking lot that we thought was at the gardens but it wasn't. A nice man there gave us good directions for getting there. We parked the car, grabbed a map and set out walking. It was really hot and sunny with not much shade and no breeze at all, so we figured we'd find the "cafe" and get Will an ice cream or something. Nothing was labeled and the map was poorly designed, so it took forever to find the place and when we got there it was insanely over priced, so we grabbed Squirt a juice box and tried to find our way back to the car. We were all overheated and miserable by this point and because of the unclear map, we ended up on the opposite side of the gardens and couldn't find the car. It took forever to find our way back to the car and by then I felt like I was going to throw up. Being pregnant and lost in the heat is not a good mix. We've decided never to go back there again. LOL! After that, we grabbed some lunch and then waited in the parking deck at the clinic until Mom called to say she was ready to go.
Dale and Mom came out of the clinic around 3:00 and we were on our way. Mom looks good: tired but surprisingly well for all she has bee through the past few days. She told me that Indra got back to the hotel room late last night and that she flew out this morning to go back to Kansas City to get medical care where Eric is. She was still in a lot of pain and doesn't have any answers yet, but it makes a lot of sense for her to receive care where Eric is and to be able to stay at home. I assume that she made it home okay and I'm sure we'll be in phone communication.
We made a few stops on the way home, including a stop to get some more cleaning supplies for the house. I have disinfecting wipes and other things for the bathroom to keep it sanitary for Mom. Will is going to be using the master bath for the next few weeks until Mom is over this hump in her treatment.
I think it was about 6:00 when we got home. We are all extremely tired and looking forward to a good night's sleep. I believe that tomorrow we start the every-other-day trips to the doc for blood work. Mom starts her neupogen shots on Tuesday. Side effects will make her feel like she has the flu and make it hard to sleep. She'll continue those and then Marilyn flies in on Sunday (a week from today). They'll go to Duke on that Monday to start stem cell collection.
Off to get my kid tucked into bed. He's pooped and going down insanely early tonight. What a good sport!
Everyone raved about the Duke gardens, so we set out to find them. We found a school building with Internet access, so fired up my laptop and got directions. Google sent us to the Duke police department. Go figure! We found a parking lot that we thought was at the gardens but it wasn't. A nice man there gave us good directions for getting there. We parked the car, grabbed a map and set out walking. It was really hot and sunny with not much shade and no breeze at all, so we figured we'd find the "cafe" and get Will an ice cream or something. Nothing was labeled and the map was poorly designed, so it took forever to find the place and when we got there it was insanely over priced, so we grabbed Squirt a juice box and tried to find our way back to the car. We were all overheated and miserable by this point and because of the unclear map, we ended up on the opposite side of the gardens and couldn't find the car. It took forever to find our way back to the car and by then I felt like I was going to throw up. Being pregnant and lost in the heat is not a good mix. We've decided never to go back there again. LOL! After that, we grabbed some lunch and then waited in the parking deck at the clinic until Mom called to say she was ready to go.
Dale and Mom came out of the clinic around 3:00 and we were on our way. Mom looks good: tired but surprisingly well for all she has bee through the past few days. She told me that Indra got back to the hotel room late last night and that she flew out this morning to go back to Kansas City to get medical care where Eric is. She was still in a lot of pain and doesn't have any answers yet, but it makes a lot of sense for her to receive care where Eric is and to be able to stay at home. I assume that she made it home okay and I'm sure we'll be in phone communication.
We made a few stops on the way home, including a stop to get some more cleaning supplies for the house. I have disinfecting wipes and other things for the bathroom to keep it sanitary for Mom. Will is going to be using the master bath for the next few weeks until Mom is over this hump in her treatment.
I think it was about 6:00 when we got home. We are all extremely tired and looking forward to a good night's sleep. I believe that tomorrow we start the every-other-day trips to the doc for blood work. Mom starts her neupogen shots on Tuesday. Side effects will make her feel like she has the flu and make it hard to sleep. She'll continue those and then Marilyn flies in on Sunday (a week from today). They'll go to Duke on that Monday to start stem cell collection.
Off to get my kid tucked into bed. He's pooped and going down insanely early tonight. What a good sport!
Off to Pick Up Mom...
In a few minutes, Allen, Will and I are leaving for our trip to pick up Mom from Duke. No new info on Indra yet but I'll keep you posted as we know more. I probably won't get online until sometime this evening after we're back at the house.
Saturday, August 28, 2010
More Info
I talked with Marilyn when she got off the phone with Eric and found out that Duke did x-rays on Indra and didn't find anything. She rated her pain as a 10 out of 10 and they have her on some good pain meds now. They're going to be running more tests until they get to the bottom of what is going on. If I hear more, I will update here. It may be morning before any of us know much more.
Mom said that the greeter from the bone marrow transplant center had been there when everything went down with Indra and that he went to see her at the hospital after he got off of work. I thought it was wonderful that he could do that. It frustrates me that nobody (family-wise) is able to be there with Indra right now, so knowing that someone cared enough to go and check on her is really wonderful.
Allen, Will and I will leave tomorrow morning to pick up Mom from Duke. Dale is going to load the luggage from the hotel room into his car and then we'll meet them at the bone marrow transplant center. Mom's appointment is at 10:30 tomorrow. We may try to be there at 11:00 or so. We can also get Indra's luggage to her at that time and stop by to see how she is doing.
Tonight, Allen and I have been sterilizing the bathroom in preparation for Mom's return. Allen changed the bunny litter in her room. All that's left is sterilizing the kitchen and Allen says he can just do that in the morning.
Praying for answers about what is going on with Indra. Hopefully we will know more soon...
Mom said that the greeter from the bone marrow transplant center had been there when everything went down with Indra and that he went to see her at the hospital after he got off of work. I thought it was wonderful that he could do that. It frustrates me that nobody (family-wise) is able to be there with Indra right now, so knowing that someone cared enough to go and check on her is really wonderful.
Allen, Will and I will leave tomorrow morning to pick up Mom from Duke. Dale is going to load the luggage from the hotel room into his car and then we'll meet them at the bone marrow transplant center. Mom's appointment is at 10:30 tomorrow. We may try to be there at 11:00 or so. We can also get Indra's luggage to her at that time and stop by to see how she is doing.
Tonight, Allen and I have been sterilizing the bathroom in preparation for Mom's return. Allen changed the bunny litter in her room. All that's left is sterilizing the kitchen and Allen says he can just do that in the morning.
Praying for answers about what is going on with Indra. Hopefully we will know more soon...
Another Update
So, not even five minutes after my last post, here I am blogging again. lol. Just when I was saying that we hadn't heard anything more from Eric, he called to let me know that he got in touch with Indra in the ER. She finally has a room and the doctor is going to start her on some pain medication right away and then investigate to figure out what is going on with her. He'll call me when he knows more. Of course, I'll pass any info on to you as soon as I hear...
Small Update
I still don't know what is going on with Indra, but I do know that when I talked with Eric she wasn't in a room in the ER yet. It has to be good news on some level that she's conscious and not in such bad shape that they had to admit her right away. We are still waiting to hear that she's been seen and to find out what is going on with her. Hopefully they will be able to find the source of her pain and help her to feel better.
Dale arrived to be with Mom shortly after my last post. He took her to CVS to get her medicine and a hair clipper so that she can shave her head before her white cells drop and she's not allowed to (risk of infection). She prefers that to losing it in clumps a couple of weeks from now.
I'll post more as soon as I hear more about Indra...
Dale arrived to be with Mom shortly after my last post. He took her to CVS to get her medicine and a hair clipper so that she can shave her head before her white cells drop and she's not allowed to (risk of infection). She prefers that to losing it in clumps a couple of weeks from now.
I'll post more as soon as I hear more about Indra...
Prayers for Indra
This afternoon, while Mom and Indra were at the bone marrow transplant center, Indra collapsed with pain in her abdomen. She was taken to Duke's emergency room by ambulance. I don't know anything more about what is going on with her. The transplant center won't let Mom leave without a caregiver, so she is not with Indra right now. Mom was able to get into contact with her cousin Dale who is packing a bag and heading over to the bone marrow transplant center to be her caregiver. Mom was also able to get in touch with Eric and Marilyn, so key people know what is going on. I'm not yet sure whether/when Eric may be flying or driving in to see about Indra. I was late getting Mom's phone call because Allen, Will and I were in a noisy mall buying Will some new shoes (which he loves--they light up!). I got her call maybe an hour later when I was sitting in the PetSmart parking lot while Allen was in buying rabbit litter. I will update the blog more once I have additional info. Please keep Indra in your prayers, as well as the doctors who are trying to figure out what is going on.
Quick Post
I'm on my way out the door to my hair appointment and thought I'd just type out a quick post. Talked with Mom this morning and she's doing well. She didn't throw up last night. The steroids had her hyped up so that she didn't sleep much, but she spent her time shopping online and reading up on the news and such. She seems to be very high energy today. Mom and Indra are headed to Mom's blood draw appointment and then should have the rest of the day to kick back. More later...
Friday, August 27, 2010
Chemo Completed
I talked with Mom not too long ago and she is nicely settled in her hotel room again with Indra. The rest of her Cytoxan infusion went well and she's feeling quite tired, but no nausea as of yet. Hopefully it will stay that way, but we will know more sometime late tonight, probably between 10pm and 2am sometime. It also turns out that they did give her a bit of steroid with the infusion, so it wasn't without the steroid buffer as we'd thought it would be. Apparently some dexamethasone went into her drip, along with the anti-nausea and anti-anxiety meds. That's a very good thing and hopefully the steroids will help to keep some of the side effects at bay.
While I was talking with Mom, Indra walked up to the grocery store (a block away) to get some things and then across the street to CVS to pick up the rest of the prescriptions. Mom says she has been so very wonderful, helpful and energetic. The bone marrow transplant clinic has a caregiver room, so Indra was able to spend some time in there for a break now and then. Apparently they have computers, televisions and things to eat and drink. Indra got back to the hotel right around the time I was signing off with Mom.
Tomorrow morning, Mom and Indra will head over to the bone marrow transplant clinic so that Mom can get her blood drawn. That appointment is at 10:30 and then they should be able to go back to the hotel room and rest for the remainder of the day.
I'll update more tomorrow, but probaly in the afternoon. In the morning, I get to have my hair cut and Will and Allen are going to a workshop at Lowe's to build a cute little school bus chalk holder. In the early afternoon, we'll be taking Squirt to get some new shoes. Lucky kiddo!
While I was talking with Mom, Indra walked up to the grocery store (a block away) to get some things and then across the street to CVS to pick up the rest of the prescriptions. Mom says she has been so very wonderful, helpful and energetic. The bone marrow transplant clinic has a caregiver room, so Indra was able to spend some time in there for a break now and then. Apparently they have computers, televisions and things to eat and drink. Indra got back to the hotel right around the time I was signing off with Mom.
Tomorrow morning, Mom and Indra will head over to the bone marrow transplant clinic so that Mom can get her blood drawn. That appointment is at 10:30 and then they should be able to go back to the hotel room and rest for the remainder of the day.
I'll update more tomorrow, but probaly in the afternoon. In the morning, I get to have my hair cut and Will and Allen are going to a workshop at Lowe's to build a cute little school bus chalk holder. In the early afternoon, we'll be taking Squirt to get some new shoes. Lucky kiddo!
In the Midst of Chemo
I talked with Mom a little over an hour ago and all is going well so far. She was a bit tired and out of it from the anti-nausea and anti-anxiety meds they are giving her, but seemed to be relaxed and doing well. She is still on the Cytoxan drip in her IV and should finish up with that sometime around 4:00 Eastern. The Cytoxan will also likely make her feel quite tired. She's never been on chemo without a steroid buffer before, so that will be new. So far, no nausea to speak of. Mom had some snacks and while I was on the phone with her, Indra brought her a grilled cheese sandwich. I'll be calling Mom to find out how she's doing and settling into her hotel room sometime between 5:00 and 5:30 Eastern. Since most people feel the brunt of their side effects 6 to 10 hours following treatment, I suspect we'll have a good idea how she's reacting to the Cytoxan sometime very late tonight.
On a funny note, Will must miss his Grandmama today because he walked into the kitchen, went to her empty spot at the table and said "Oh hi Will!," pretending that she was sitting right there. I thought it was so cute. Little kids have the best imaginations.
On a funny note, Will must miss his Grandmama today because he walked into the kitchen, went to her empty spot at the table and said "Oh hi Will!," pretending that she was sitting right there. I thought it was so cute. Little kids have the best imaginations.
Thursday, August 26, 2010
Hickman Port Day
Today, Mom had her Hickman port installed. Everything went well with that this morning and they did it under sedation, not general anesthesia. That sure makes things easier. Indra was with Mom the whole time. Following the procedure, they went to the bone marrow transplant center to meet with the doctor, then to the pharmacy before going back to the hotel. Shuttles made transportation relatively easy, which is great. After they got back to the hotel, the home health nurse came to hook Mom up to her IV. It's extremely important for her to remain fully hydrated while on the Cytoxan.
The doctor is having Mom follow a neutropenic diet, where she can't have fresh veggies or fruits. That will be a challenge for this vegetarian once Mom gets home, but it shouldn't be too much trouble to get that figured out. It sounds like proteins and carbohydrates are good bets. Canned goods are okay, if we wash the can thoroughly before opening and then heat everything up really well.
In other news, today Mom was informed that after Wednesday she can't be in contact with Will. I sure wish they would have told us this earlier, as this is kind of a tough concept for an almost three year old. She is his favorite person in the whole entire world. Until Wednesday, if he has contact with her he can't have a cold and he has to wash his hands, etc. Anyway, once he can't have contact with Mom I'm not entirely sure what to do. I picked Marilyn's brain for ideas earlier today and she thinks maybe Mom wearing long sleeves and pants, along with gloves would be the smartest thing. I think that's a great idea. We'll have to experiment once Mom gets home. My greatest concern is that Will doesn't feel like it's his fault that he can't have contact with her, that Grandmama is upset with him or like he did something wrong. I'm going to begin working with him on the concept of not touching and finding other ways to communicate for a little bit until Mom's white blood cell count comes back up (it'll drop 5 to 7 days following her chemo dose and then take a few weeks to come back up). Whew, heavy stuff for such a little guy but he is a smart cookie, so we'll see.
Mom's infusion appointment is set for 8:30 tomorrow morning. The infusion will take four hours. From what I've read, the bulk of people feel the onset of side effects between 6 and 10 hours following infusion. So, we'll be looking at having a good read on Mom's reaction to Cytoxan sometime late tomorrow evening. Duke will be including anti-nausea medications in Mom's IV and they've also prescribed two different pills she can take at the hotel, if she needs to. It looks like she'll lose her hair about two weeks following treatment. Mom already has one very nice wig and she ordered another today.
We are praying for a good reaction to the medication tomorrow, without too much nausea. Thanks for all your thoughts, prayers and support. It means a lot!
The doctor is having Mom follow a neutropenic diet, where she can't have fresh veggies or fruits. That will be a challenge for this vegetarian once Mom gets home, but it shouldn't be too much trouble to get that figured out. It sounds like proteins and carbohydrates are good bets. Canned goods are okay, if we wash the can thoroughly before opening and then heat everything up really well.
In other news, today Mom was informed that after Wednesday she can't be in contact with Will. I sure wish they would have told us this earlier, as this is kind of a tough concept for an almost three year old. She is his favorite person in the whole entire world. Until Wednesday, if he has contact with her he can't have a cold and he has to wash his hands, etc. Anyway, once he can't have contact with Mom I'm not entirely sure what to do. I picked Marilyn's brain for ideas earlier today and she thinks maybe Mom wearing long sleeves and pants, along with gloves would be the smartest thing. I think that's a great idea. We'll have to experiment once Mom gets home. My greatest concern is that Will doesn't feel like it's his fault that he can't have contact with her, that Grandmama is upset with him or like he did something wrong. I'm going to begin working with him on the concept of not touching and finding other ways to communicate for a little bit until Mom's white blood cell count comes back up (it'll drop 5 to 7 days following her chemo dose and then take a few weeks to come back up). Whew, heavy stuff for such a little guy but he is a smart cookie, so we'll see.
Mom's infusion appointment is set for 8:30 tomorrow morning. The infusion will take four hours. From what I've read, the bulk of people feel the onset of side effects between 6 and 10 hours following infusion. So, we'll be looking at having a good read on Mom's reaction to Cytoxan sometime late tomorrow evening. Duke will be including anti-nausea medications in Mom's IV and they've also prescribed two different pills she can take at the hotel, if she needs to. It looks like she'll lose her hair about two weeks following treatment. Mom already has one very nice wig and she ordered another today.
We are praying for a good reaction to the medication tomorrow, without too much nausea. Thanks for all your thoughts, prayers and support. It means a lot!
Wednesday, August 25, 2010
Arrival in Durham
Thank you all for all of your emails the past day or so. It is great to know that we have all of your support and prayers!
Mom is now staying in Durham, at her hotel. We picked up Indra and they are settled in nicely. Mom had her pulmonary function tests done and all seems well with those. Will and I made it back home safely.
Tomorrow morning, Mom and Indra will go to Duke Hospital via taxi so that Mom can get her Hickman line placed. Everything I've read indicates that they most often do this by giving general anesthesia, but occasionally they use sedation. I am not sure which Mom will have but I will update the blog tomorrow after I know the line has been successfully placed. After placement, Mom will meet with her doctor at the bone marrow transplant center and then go back to the hotel room, where the home health nurse will get her started on an IV in preparation for Friday's high dose chemo treatment.
Off to bed.... :-)
Mom is now staying in Durham, at her hotel. We picked up Indra and they are settled in nicely. Mom had her pulmonary function tests done and all seems well with those. Will and I made it back home safely.
Tomorrow morning, Mom and Indra will go to Duke Hospital via taxi so that Mom can get her Hickman line placed. Everything I've read indicates that they most often do this by giving general anesthesia, but occasionally they use sedation. I am not sure which Mom will have but I will update the blog tomorrow after I know the line has been successfully placed. After placement, Mom will meet with her doctor at the bone marrow transplant center and then go back to the hotel room, where the home health nurse will get her started on an IV in preparation for Friday's high dose chemo treatment.
Off to bed.... :-)
Tuesday, August 24, 2010
Update on Mom
Greetings Everyone,
I wanted to send out an email to everyone with updates on my Mom. For some of you, much of this is old news, while for others all of this will be new information. I haven't been the best at keeping in touch with many folk, but those who live close or who have been really involved in the process have been pretty much in the loop.
First, the good news. About a month ago, we learned that Mom is in a full remission from multiple myeloma. We are overjoyed! Our family took her out to celebrate at a French spot with amazing crepes and just had a ball.
Now, for the updates on what is coming up in the next few weeks. Duke is going to harvest Mom's stem cells and store them so that they are available to her when the cancer comes back, if she decides to have a bone marrow transplant. This is a very long and involved process. I'll give it to you step by step.
Tomorrow, I drive Mom to Duke where she will have some tests done. My uncle Eric's other half (Indra) will be flying in to Raleigh's airport, where we'll pick her up. She will be staying with Mom during the very high dose chemo treatment, since I am pregnant and can't take chances. Chemo is excreted in bodily fluids and having such a high dose could be risky to the baby if I were to get a large quantity of bodily fluids on me. We decided not to take that chance and Indra is beyond sweet to be flying in to be with my Mom during this process.
Thursday, Mom will have a Hickman port placed in her chest that allows the clinic easy access to her veins for administering chemotherapy and harvesting stem cells. Thursday evening a home health aide will go to Mom's hotel room to administer IV fluids in preparation for chemo.
Friday morning, Mom will receive her very high dose of Cytoxan, a chemotherapy drug. Even though Mom is in remission, they administer chemo to make sure as many cancer cells are gone as possible. The cleaner her stored stem cells are, the better a transplant will work, if she ever decides to have one.
Duke is going to be administering lots of anti-nausea medication and pain medication to Mom during the chemo and afterward. She will remain on the IV with fluids in her hotel room. Sunday, Allen, Will and I will drive to pick her up and Indra will fly home.
Beginning Monday (the 30th), Mom will be going to have bloodwork done every other day and will be giving herself a neupogen shot every single day. The neupogen makes more stem cells available in the blood stream. Since Mom isn't allowed to drive during this process, I'll be driving her to her appointments.
Sometime the weekend of the 4th/5th, my aunt Marilyn will be flying in from CA to help with the second time-frame where Mom will have to be at Duke. They'll drive up to Duke and starting Monday, Mom will have stem cells harvested through a process called aphoresis. They hook her up to a machine that circulates her blood and filters out the stem cells before pumping the rest of the blood back into her body. This process can take anywhere from one to five days, depending on how many stem cells are freely available in the bloodstream. Due to the unpredictable length of the process and Allen's limited available time off from work, along with Will not being allowed in the bone marrow transplant center, it would be pretty hard for us to be there. So, we are eternally grateful that Marilyn is going to be here and that she will be able to be with Mom during that process.
Following the stem cell harvesting, Mom will have a one to two week recovery period. That process usually makes people feel pretty tired and since the drugs leading up to it are pretty powerful, they do take a toll on the system.
Mid-September, Mom will begin her maintenance chemotherapy regimen. She will cycle between three different chemo drugs. One month it will be Velcade, the next melphalan and the next Revlimid. This cycling will continue for up to two years, as long as she remains in a remission. The goal of this therapy is to extend the length of her remission as long as possible.
I will be updating about Mom daily at a blog that I have set up. Please check there for updates. I think that is the easiest way for me to keep people informed.
Now, on a different note, many of you know that I am 23 weeks pregnant. We are extremely excited to be welcoming a new baby to our family in late December. My due date is December 22nd and we are working with a wonderful and skilled midwife who will be attending the homebirth of our child. We have not found out the gender and may end up keeping it a surprise this time. Everything is going well so far and we are overjoyed! In the next few months, we are also excited to be building an addition onto our home with a baby room, two offices and a second family room. There is never a dull moment around here! :-D
Thanks so much for all of your support and prayers. We feel them daily and even though I'm not always able to stay in touch the way I would like to, I really do love and appreciate all of you. I anticipate that things here will settle down a little after the next few weeks and that it will be easier for me to catch up with you and to stay in touch.
Much Love,
Anne
I wanted to send out an email to everyone with updates on my Mom. For some of you, much of this is old news, while for others all of this will be new information. I haven't been the best at keeping in touch with many folk, but those who live close or who have been really involved in the process have been pretty much in the loop.
First, the good news. About a month ago, we learned that Mom is in a full remission from multiple myeloma. We are overjoyed! Our family took her out to celebrate at a French spot with amazing crepes and just had a ball.
Now, for the updates on what is coming up in the next few weeks. Duke is going to harvest Mom's stem cells and store them so that they are available to her when the cancer comes back, if she decides to have a bone marrow transplant. This is a very long and involved process. I'll give it to you step by step.
Tomorrow, I drive Mom to Duke where she will have some tests done. My uncle Eric's other half (Indra) will be flying in to Raleigh's airport, where we'll pick her up. She will be staying with Mom during the very high dose chemo treatment, since I am pregnant and can't take chances. Chemo is excreted in bodily fluids and having such a high dose could be risky to the baby if I were to get a large quantity of bodily fluids on me. We decided not to take that chance and Indra is beyond sweet to be flying in to be with my Mom during this process.
Thursday, Mom will have a Hickman port placed in her chest that allows the clinic easy access to her veins for administering chemotherapy and harvesting stem cells. Thursday evening a home health aide will go to Mom's hotel room to administer IV fluids in preparation for chemo.
Friday morning, Mom will receive her very high dose of Cytoxan, a chemotherapy drug. Even though Mom is in remission, they administer chemo to make sure as many cancer cells are gone as possible. The cleaner her stored stem cells are, the better a transplant will work, if she ever decides to have one.
Duke is going to be administering lots of anti-nausea medication and pain medication to Mom during the chemo and afterward. She will remain on the IV with fluids in her hotel room. Sunday, Allen, Will and I will drive to pick her up and Indra will fly home.
Beginning Monday (the 30th), Mom will be going to have bloodwork done every other day and will be giving herself a neupogen shot every single day. The neupogen makes more stem cells available in the blood stream. Since Mom isn't allowed to drive during this process, I'll be driving her to her appointments.
Sometime the weekend of the 4th/5th, my aunt Marilyn will be flying in from CA to help with the second time-frame where Mom will have to be at Duke. They'll drive up to Duke and starting Monday, Mom will have stem cells harvested through a process called aphoresis. They hook her up to a machine that circulates her blood and filters out the stem cells before pumping the rest of the blood back into her body. This process can take anywhere from one to five days, depending on how many stem cells are freely available in the bloodstream. Due to the unpredictable length of the process and Allen's limited available time off from work, along with Will not being allowed in the bone marrow transplant center, it would be pretty hard for us to be there. So, we are eternally grateful that Marilyn is going to be here and that she will be able to be with Mom during that process.
Following the stem cell harvesting, Mom will have a one to two week recovery period. That process usually makes people feel pretty tired and since the drugs leading up to it are pretty powerful, they do take a toll on the system.
Mid-September, Mom will begin her maintenance chemotherapy regimen. She will cycle between three different chemo drugs. One month it will be Velcade, the next melphalan and the next Revlimid. This cycling will continue for up to two years, as long as she remains in a remission. The goal of this therapy is to extend the length of her remission as long as possible.
I will be updating about Mom daily at a blog that I have set up. Please check there for updates. I think that is the easiest way for me to keep people informed.
Now, on a different note, many of you know that I am 23 weeks pregnant. We are extremely excited to be welcoming a new baby to our family in late December. My due date is December 22nd and we are working with a wonderful and skilled midwife who will be attending the homebirth of our child. We have not found out the gender and may end up keeping it a surprise this time. Everything is going well so far and we are overjoyed! In the next few months, we are also excited to be building an addition onto our home with a baby room, two offices and a second family room. There is never a dull moment around here! :-D
Thanks so much for all of your support and prayers. We feel them daily and even though I'm not always able to stay in touch the way I would like to, I really do love and appreciate all of you. I anticipate that things here will settle down a little after the next few weeks and that it will be easier for me to catch up with you and to stay in touch.
Much Love,
Anne
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