Super quick update before I head down to my meeting.
Engraftment happened Sunday! She's no longer neutropenic and was released from lock down yesterday! No more extra fluid bag to carry around either.
I think she and daddy went out to celebrate last night -- for his birthday AND for her. :)
How GREAT is our God?
Fighting Like A Girl
Tuesday, October 27, 2009
Sunday, October 25, 2009
Day 9 & 10
Just arrived at the outpatient center at St. Francis for weekend labs, fluids, and doc appointment. We've been here for 45 minutes already and she's only had her BP and weight taken. No labwork yet which means the doctor will be here before the lab results are. Fluids haven't been hung yet either which means we'll be here even longer than we need to be. Not sure what the deal is but they need to get moving.
ETA: Fluids are going. The doctor came in and said things were looking good (no need for blood products today -- something they mentioned possibly needing yesterday). Sigh of relief. Labwork is back and looks good. WBCs are up to 2900.
Saturday
Blood pressure yesterday was significantly better. WBCs were up to 500 from 200 on Friday. Lab results didn't show neutrophil counts so I can't report on those. She also had to have fluids.
Lib (momma's sister) came and took over for the afternoon so I could do a little shopping. EJ also came down for dinner and a movie -- I can't believe it had been two weeks since we'd seen each other.
I forgot to mention a few posts back that she started neupogen shots again on Wednesday. She's not experiencing any bone pain yet like last time. We're becoming pros at changing fluid bags, operating pumps, and giving shots. The neupogen shots as well as antibiotics will stop when neutrophils reach 15,000.
I'm leaving for a week long meeting in Atlanta later today. Lib will be staying with momma tonight and Daddy will be here tomorrow afternoon to take over for the week. Should be an easy week for him especially if she's taken off of lock down mid week as expected.
Thank you all for your continued prayers and well wishes!
Fighting Like A Girl
ETA: Fluids are going. The doctor came in and said things were looking good (no need for blood products today -- something they mentioned possibly needing yesterday). Sigh of relief. Labwork is back and looks good. WBCs are up to 2900.
Saturday
Blood pressure yesterday was significantly better. WBCs were up to 500 from 200 on Friday. Lab results didn't show neutrophil counts so I can't report on those. She also had to have fluids.
Lib (momma's sister) came and took over for the afternoon so I could do a little shopping. EJ also came down for dinner and a movie -- I can't believe it had been two weeks since we'd seen each other.
I forgot to mention a few posts back that she started neupogen shots again on Wednesday. She's not experiencing any bone pain yet like last time. We're becoming pros at changing fluid bags, operating pumps, and giving shots. The neupogen shots as well as antibiotics will stop when neutrophils reach 15,000.
I'm leaving for a week long meeting in Atlanta later today. Lib will be staying with momma tonight and Daddy will be here tomorrow afternoon to take over for the week. Should be an easy week for him especially if she's taken off of lock down mid week as expected.
Thank you all for your continued prayers and well wishes!
Fighting Like A Girl
Friday, October 23, 2009
Day 8
We're on the upswing! Counts are rebounding and the transplant nurse thinks momma will be out of this neutropenic stage by Monday! WBCs are up to 200 from 100 yesterday. Monocytes are up to 44%. She had to get extra fluids today and yesterday because of her low blood pressure. They decided to put her on two BP meds today that should help. BP this morning was 78/60 --- probably due to the dehydration which is due to the diarrhea. She was dizzy this morning when we were getting ready to leave for the cancer center so she's taking it slow when moving around.
The transplant nurse commented today that typically on Day 8 transplant patients have to be wheeled to the transplant unit in a wheelchair. No need for a wheelchair here!! Not surprising considering how great things have gone thus far.
The absence of the DAB pump hasn't been much of an issue. She's been able to control any nausea she's had with her ativan. As long as she keeps something in her stomach at all times she seems to do pretty well. She's been snacking on cheese, crackers, and cookies. Cheerios seem to hit the spot in the morning too.
Her love for sweet tea can't be quenched -- the transplant nurse warned her that she should probably stay away from her "favorites" for now so she doesn't develop an aversion to them later. She couldn't seem to find a beverage that tasted right -- she tried tea, Sierra Mist, Coke, juice -- nothing seemed to work. So we stopped at the gas station on the way home from the cancer center and I loaded up on a variety of beverage options for her to try. Her first test was a Sun Drop -- go figure it tasted good and she requested a 2 liter when I went to Walmart for groceries. Who's going to drink all of these odd ball drinks now?
Fighting Like A Girl
The transplant nurse commented today that typically on Day 8 transplant patients have to be wheeled to the transplant unit in a wheelchair. No need for a wheelchair here!! Not surprising considering how great things have gone thus far.
The absence of the DAB pump hasn't been much of an issue. She's been able to control any nausea she's had with her ativan. As long as she keeps something in her stomach at all times she seems to do pretty well. She's been snacking on cheese, crackers, and cookies. Cheerios seem to hit the spot in the morning too.
Her love for sweet tea can't be quenched -- the transplant nurse warned her that she should probably stay away from her "favorites" for now so she doesn't develop an aversion to them later. She couldn't seem to find a beverage that tasted right -- she tried tea, Sierra Mist, Coke, juice -- nothing seemed to work. So we stopped at the gas station on the way home from the cancer center and I loaded up on a variety of beverage options for her to try. Her first test was a Sun Drop -- go figure it tasted good and she requested a 2 liter when I went to Walmart for groceries. Who's going to drink all of these odd ball drinks now?
Fighting Like A Girl
Wednesday, October 21, 2009
MJ is BACK!
We're still here! I made it back from my Philly work trip around 8:30 last night. Daddy was on cancer center duty on Monday. Jessica was on duty yesterday. They both did an excellent job filling in for me while I was gone. I didn't like being gone for the short time I was. I'm attending my company's national meeting in Atlanta next week and will be gone for 5 days -- Daddy will be here while I'm gone. I'll try my best to keep everyone up to date on her daily progress while I'm gone.
Momma had to be given extra fluids yesterday because her blood pressure dropped when she went from sitting to standing. Other than diarrhea, lack of appetite/taste, and low energy she seems to be doing pretty good considering what her body has been through. She's still neutropenic and will be for a few more days. Cancer center visit today was a quick one. Fluids and labwork. They also gave her a script for the diarrhea so she can try something other than Imodium. They reduced her DAB pump yesterday to try and start weaning her off the nausea meds. The transplant nurse mentioned trying to remove it completely tomorrow. She'll still be able to take meds by mouth. Let's hope that goes well -- it's not the most stylish accessory. But I must say there's only been 1 vomiting episode so that little bag of meds has done it's job!
One thing I noticed today --- the transplant nurse and nurse practitioner seemed so surprised that she hasn't developed mouth sores yet. It was kinda like they were disappointed when she opened her mouth and they didn't see any -- I know that's terrible to say but that's my observation. Hey she beat the record for stem cell collection why can't she beat the odds and not get mouth sores? I'm just saying.
Also, Google Analytics says we're getting visitors/readers from 13 states and 10 countries. Who are you guys? We'd love to hear where you're from and what brought you to our blog!
I'll leave you with our Week 5 photo. Channeling Michael Jackson and still smiling.
Momma had to be given extra fluids yesterday because her blood pressure dropped when she went from sitting to standing. Other than diarrhea, lack of appetite/taste, and low energy she seems to be doing pretty good considering what her body has been through. She's still neutropenic and will be for a few more days. Cancer center visit today was a quick one. Fluids and labwork. They also gave her a script for the diarrhea so she can try something other than Imodium. They reduced her DAB pump yesterday to try and start weaning her off the nausea meds. The transplant nurse mentioned trying to remove it completely tomorrow. She'll still be able to take meds by mouth. Let's hope that goes well -- it's not the most stylish accessory. But I must say there's only been 1 vomiting episode so that little bag of meds has done it's job!
One thing I noticed today --- the transplant nurse and nurse practitioner seemed so surprised that she hasn't developed mouth sores yet. It was kinda like they were disappointed when she opened her mouth and they didn't see any -- I know that's terrible to say but that's my observation. Hey she beat the record for stem cell collection why can't she beat the odds and not get mouth sores? I'm just saying.
Also, Google Analytics says we're getting visitors/readers from 13 states and 10 countries. Who are you guys? We'd love to hear where you're from and what brought you to our blog!
I'll leave you with our Week 5 photo. Channeling Michael Jackson and still smiling.
Fighting Like A Girl
Sunday, October 18, 2009
Weekend Update
Friday
We spent the morning at the cancer center for labwork and to see Dr. F. Counts were still in the normal range. They sent us home with fluids -- so now she's carrying the DAB bag and a 2 pound fluid bag. They gave us 2 extra bags and taught me how to change them on Saturday and Sunday.
We tried to venture out to the grocery store Friday afternoon. We'd barely made it out of the hotel parking lot when we had to pull over to puke. She'd been sleeping and got up to go fairly quickly so we think she didn't take the trip out to the car slow enough. No puking after that.
Saturday
We made our way to the outpatient unit at St. Francis (the cancer center is closed on weekends) for labwork. We also saw Dr. F since she was on call this weekend -- all transplant patients are seen every day after transplant. They increased dosage on the DAB pump - it had been decreased on Friday and Dr. F thought it may have caused her increased nausea on Friday. She also gave us a script for Zofran to take as needed. Counts were still in the normal range Saturday.
Daddy arrived Saturday night to spend a few days so I can take a quick work trip out of town Monday and Tuesday.
Sunday
Back to St. Francis this morning for labwork again and to see Dr. F. They always check her BP sitting and standing -- she had a drop in BP when she stood up this morning so they decided to give her fluids.
The outpatient unit was insane when we got there. Every chair was full of patients, the nurses were behind, and the phones were ringing off the hook. The nurse taking blood from momma's port was talking on the phone the entire time regarding a patient who was being admitted. She ended up getting the patients name mixed up (actually used momma's first name) and wasn't even close to saying the correct last name. I wanted to say "Listen, we aren't in any kind of hurry today. Get the other patient admitted then come focus on us. I'm not impressed by your lack of multitasking skills." Everything finally settled down. We saw the doc and got the heck out of there.
Jessica was able to come today to celebrate her birthday a day early -- I can't believe she'll be 20 tomorrow. We went to lunch at Cracker Barrel (your favorite place PaPa!) then opened presents and had cake back at the hotel. She'll be spending the new two days with momma as well while I'm out of town.
I wonder if I can convince one of them (Jess or Daddy) to update this while I'm gone for two days?
We spent the morning at the cancer center for labwork and to see Dr. F. Counts were still in the normal range. They sent us home with fluids -- so now she's carrying the DAB bag and a 2 pound fluid bag. They gave us 2 extra bags and taught me how to change them on Saturday and Sunday.
We tried to venture out to the grocery store Friday afternoon. We'd barely made it out of the hotel parking lot when we had to pull over to puke. She'd been sleeping and got up to go fairly quickly so we think she didn't take the trip out to the car slow enough. No puking after that.
Saturday
We made our way to the outpatient unit at St. Francis (the cancer center is closed on weekends) for labwork. We also saw Dr. F since she was on call this weekend -- all transplant patients are seen every day after transplant. They increased dosage on the DAB pump - it had been decreased on Friday and Dr. F thought it may have caused her increased nausea on Friday. She also gave us a script for Zofran to take as needed. Counts were still in the normal range Saturday.
Daddy arrived Saturday night to spend a few days so I can take a quick work trip out of town Monday and Tuesday.
Sunday
Back to St. Francis this morning for labwork again and to see Dr. F. They always check her BP sitting and standing -- she had a drop in BP when she stood up this morning so they decided to give her fluids.
The outpatient unit was insane when we got there. Every chair was full of patients, the nurses were behind, and the phones were ringing off the hook. The nurse taking blood from momma's port was talking on the phone the entire time regarding a patient who was being admitted. She ended up getting the patients name mixed up (actually used momma's first name) and wasn't even close to saying the correct last name. I wanted to say "Listen, we aren't in any kind of hurry today. Get the other patient admitted then come focus on us. I'm not impressed by your lack of multitasking skills." Everything finally settled down. We saw the doc and got the heck out of there.
Jessica was able to come today to celebrate her birthday a day early -- I can't believe she'll be 20 tomorrow. We went to lunch at Cracker Barrel (your favorite place PaPa!) then opened presents and had cake back at the hotel. She'll be spending the new two days with momma as well while I'm out of town.
I wonder if I can convince one of them (Jess or Daddy) to update this while I'm gone for two days?
Thursday, October 15, 2009
Day 0: Blow by Blow
We've been waiting for reinfusion day for the last 4.5 weeks.
Each bag took about 10 minutes. Each bag was checked, double checked, and tripled checked to make sure they were her stem cells before they bags were hung.
The transplant nurse monitored her temperature, BP, and heart rate during the entire process. Getting those babies back is alot less complicated than giving them up!
We began the morning with labwork followed by premeds - Benadryl, Ativan, and Tylenol. The transplant nurses let me watch while they prepared the two bags of stem cells for reinfusion.
The SCs arrived an an R2D2 like contraption.
The bags then had to take a warm bath to thaw out.
Each bag took about 10 minutes. Each bag was checked, double checked, and tripled checked to make sure they were her stem cells before they bags were hung.The transplant nurse monitored her temperature, BP, and heart rate during the entire process. Getting those babies back is alot less complicated than giving them up! We'd read and heard that the preservative used to store the stem cells gives off a garlic like smell after reinfusion. It definitely smells like Olive Garden in our room tonight. Momma can't smell it but I can. It's only supposed to last 24 - 48 hours. It's not nearly as bad as the time EJ ate an entire bulb of roasted garlic...so I can live with it.
Still on the DAB bag and she was also given a fluid bag for the night.
She doesn't have much of an appetite and has been napping pretty much all afternoon. Today was a good day -- a day that gives us hope for the future. On the other side of this, if she reaches CR, the garlic smell will all be worth it....
Side note --- Michael McKean played on behalf of the International Multiple Myeloma Foundation on the Jeopardy Celebrity Invitational tonight. He won and $50,000 is being donated to IMF!!! AWESOME!!
Wednesday, October 14, 2009
...it cannot invade the soul...
I think we're both in a weird funk today. Maybe it's the crappy weather. Hopefully it will be gone tomorrow -- the crappy weather and the weird funk.
Went in to the cancer center for lab work and fluids today. Lab work still looks good -- should start seeing those counts drop early next week.
Reinfusion is tomorrow. Nurse Carolyn told us today she'd be getting 32 million stem cells back!!
I saw this poem on the wall at the cancer center. Thought I would share it with our readers.
Cancer is so limited. . .
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot eat away peace,
It cannot kill friendship,
It cannot silence courage,
It cannot invade the soul,
It cannot reduce eternal life,
It cannot destroy confidence,
It cannot shut out memories,
It cannot quench the spirit,
It cannot lessen the power of the resurrection.
Though the physical body may be destroyed by disease, the spirit can remain triumphant. If disease has invaded your body, refuse to let it touch your spirit. Your body can be severely afflicted, and you may have a struggle, But if you keep trusting God's love, your spirit will remain strong.
Why must I bear this pain? I cannot tell;I only know my Lord does all things well.And so I trust in God, my all in all.For He will bring me through, whatever befall.
Our greatest enemy is not disease, but despair.
--Author unknown
Tuesday, October 13, 2009
High Dose Day 2 -- alot like Day 1
Not much to report today. Second and final day of Melphalan. We will return to the cancer center tomorrow for labwork and fluids. She feels pretty good -- using the "give me more" button on the DAB pump when she needs it. Reinfusion aka DAY 0 will be Thursday. I've read a few other blogs of MM patients who refer to reinfusion as a birthday. Maybe there will be cake? Let's hope it's chocolate.
Speaking of dessert -- we treated ourselves to this heavenly delight today. Good thing the gym is right down the hall from our room.
Monday, October 12, 2009
High Dose Day 1 in Pictures
Melphalan - has to hide out in a kryptonite green bag because it's sensitive to light. That's it's only weakness -- this stuff is no joke kids.
Nonstop popsicles to prevent mouth sores.
More popsicles...
Accessories are a girl's best friend.
Excited about the DAB bag -- anti nausea meds.
Still Smiling. Still Fighting.
Fighting Like A Girl
Sunday, October 11, 2009
Getting Back in the Ring
We are heading back to Greenville today to start high dose and reinfusion tomorrow rather than next week. The transplant coordinator called last week to say our favorite tranplant nurse would be on vacation during the week we were scheduled to return and asked if we'd come back a week early. No problem. We didn't get to head down to Edisto like we planned but Edisto isn't going anywhere (neither are the sharks teeth) and we're ready to continue the fight.
Here's how our week should look:
Monday: Melphalan
Tuesday: More Melphalan
Wednesday: Rest
Thursday: Reinfusion of stem cells
We're stepping into the ring this week feeling pretty good and hoping that the last stage of the transplant will be a TKO of multiple myeloma.
Also, for those who have been sending cards, letters, etc., our address will remain the same. Please comment with your email address if you need the info and I'll send it.
Here's how our week should look:
Monday: Melphalan
Tuesday: More Melphalan
Wednesday: Rest
Thursday: Reinfusion of stem cells
We're stepping into the ring this week feeling pretty good and hoping that the last stage of the transplant will be a TKO of multiple myeloma.
Also, for those who have been sending cards, letters, etc., our address will remain the same. Please comment with your email address if you need the info and I'll send it.
Friday, October 2, 2009
Home Sweet Home
We were released yesterday to come home for a two week break. We'll have to be back in Greenville on the 19th to begin high dose chemo and reinfusion of her stem cells. Hopefully the break will give her enough time to recover from what she's been through so far and she can give Melphalan the one two punch when we return to Greenville.
Planning a trip up to the mountains or down to the beach to relax for a few days.
She's feeling good today and was able to sleep in this morning. Abby is enjoying our company now that we're back.
Thank you for your continued prayers and thank you to those who sent cards/letters -- your words of encouragement mean so much.
Fighting Like A Girl
Planning a trip up to the mountains or down to the beach to relax for a few days.
She's feeling good today and was able to sleep in this morning. Abby is enjoying our company now that we're back.
Thank you for your continued prayers and thank you to those who sent cards/letters -- your words of encouragement mean so much.
Fighting Like A Girl
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