Tomorrow morning, on my 26th day as an inpatient on the Bone Marrow Transplant Unit at Roswell Park Cancer Institute, I will be discharged!!! It's 99% certain which is as close to 100% you'll ever get from a doctor.
Thank you, thank you for your prayers and support. This process is not over for me, but this is a huge and welcome obstacle cleared.
Please pray that I will never be admitted here again. Please pray that I can leave this behind and raise my babies with the love of my life and tap dance into old age with him.
Please pray for my husband and kids. I'm still not going home...I'll be at my Mom and Dad's for 2 weeks. These 2 weeks are critical in ensuring that I don't end up readmitted. This is the best decision, but it is a very difficult one. We'll be able to see each other as much as we want, but they just want Mommy home. Mommy just wants Mommy home too.
Pray for my Dad who will be in charge of my care and supervision for the next 2 weeks. If anyone can snap this patient into shape it's him. He's going to be in charge of my meds, making sure I'm exercising, monitoring my symptoms, and taking me to my appointments. He's also going to be in charge of getting me to gain back the 10 pounds I've lost.
Please offer a prayer of thanksgiving for my husband who was nothing short of heroic during this time, for my Mom and Dad, for my In-Laws, for many dear friends and loved ones who supported us with prayers and meals and rides to swim lessons.
Please offer a prayer of thanksgiving for the Doctors, Nurses, Health Care Aides, Nurse Practitioners, and everyone who cares for the transplant patients on 5 East at Roswell Park Cancer Institute with great compassion and skill.
When I was 19 weeks pregnant with my 6th child I was diagnosed with Hodgkin's Lymphoma. I started Chemotherapy during pregnancy and we lived to tell the tale! But now the cancer is back. BOO! I'm having an Autologous Bone Marrow Transplant to get rid of it once and for all. So, um, yeah. This is my attempt to process it.
Showing posts with label Power of Prayer. Show all posts
Showing posts with label Power of Prayer. Show all posts
Sunday, August 24, 2014
Tuesday, June 24, 2014
Fun with Weapons of Mass Destruction or Life on ICE
So I made it through Cycle 1 of the chemo that is preparing me for the Autologous Bone Marrow Transplant. Wow, it's tough. It's really really tough. It hits hard and it's gross. I'm actually back in the hospital for round 2 and at least I know what to expect this time. What I expect is this:
Day 1:
Easy. I actually came into the hospital in the evening this time and started my chemo at around 2am. This was only the second time my port has been accessed and it makes me really nervous. I took Ativan before I came to the hospital this time to chill me out a bit and to help me handle the taste of the saline when they flush my lines and it seemed to really help a lot. My actual chemo not including pre-meds (steroid, anti-nausea) was only a 2 hour bag so I was able to sleep pretty well, the nurses aids are great about doing my blood pressure, pulse ox, and temperature even if I'm asleep if they can get to my arm which is nice.
Day 2:
Easy. I was able to eat well, walk 33 laps around my wing (which equals a mile), have a wonderful visit with a very dear friend and 2 visits from my husband. I also took a shower and dressed in real clothes so I could visit with my friend OUTSIDE in the hospital courtyard which was so nice. Tonight I get all 3 of the chemo drugs in my protocol. One of them runs for 24 hours and it's difficult. Really difficult. It smells so bad, just when it hangs in the bag, before you're even hooked up. I'm not sure if I can taste it when I'm getting it but I'm pretty sure I can, even after I leave the hospital. Guess why it's so stinky...did you guess? It's derived from mustard gas. I know. A bunch of my "pharmaceuticals are the devil" readers just passed out. Anyway, I have to be hooked up to that from 5am to 5am. That's my fun with WMD. I also have the 2 hour bag I had last night and another 1 hour bag of something else. Which means day 3 isn't exactly a barn burner in the productivity department.
Day 3:
I'll be hooked up to the mustard gas all day and all night today. It will be gross and my appetite will suffer. I have to force myself to eat the best I can because last cycle I lost a lot of weight. I lost about 7 pounds, which I really don't have room to lose. I rallied in the following weeks, but I didn't manage to get it all back before I came back here to start the new cycle. It' really important that I maintain my weight to the best of my ability in order to give myself every advantage going into the transplant because I'll definitely lose weight when I start that super chemo and the ensuing process. At my hospital there is Mass at noon on Wednesdays so I will be going. By the time I get back my day is pretty much over. I get in bed and I'm pretty useless.
Day 4:
Today I pack up my stuff, get cleaned up, and wait to be discharged. When I get home I go to bed and I sleep almost solid until day 6 or even into Day 7. I get up to (hopefully) eat, drink water, and use the bathroom.
Day 5:
I forgot to say that on Day 5 I go to the hospital to get a Neulasta shot. It's really hard to go to the hospital because I'm so tired. I get home and day over and like I mentioned above under Day tomorrow and possibly the next day over.
Day 7:
Hopefully I wake up this morning and can get out of bed to go to Doughnut Party at my parents as long as nobody is sick. I get to sit at the table with my family and possibly eat a bit of toast. Then I go home and straight back to bed. I still mostly sleep, but I'm getting into a weird status where I'm to weak to sit up or move but my mind is very awake. I end up watching a lot of TV on my computer.
Day 8:
Back to the hospital today for bloodwork. I spend the whole time praying that I don't need a transfusion. Unfortunately this cycle it won't be a question of if, but when. Blech. Then I hopefully go home, go back to bed. I try to read to the kids in short spurts while I have enough energy.
Day 9-12:
I alternate between hospital free days and hospital days for blood work. I get a bit more energy each day but all that means at this point is that my eyes are open more than they're closed and the kids can come in my room more if they're healthy, they've changed their clothes, and washed their hands. My appetite is beginning to improve and I don't require Zofran to control my nausea anymore.
Day 13:
Watch out! I spend most of the day sitting up in the DOWNSTAIRS OF THE HOUSE as long as everyone is healthy. I even eat some of my meals in the kitchen with my family.
Day 14:
Back to my parents' house for Doughnut Party, more sitting up like a person and even walking around a bit. I beginning to get a tad full of myself. My appetite is improving but I still have to get into bed by 6:30 pm or so.
Day 15:
I am now officially big for my britches (figuratively) and have commenced doing more than I should because I'm feeling guilty and I'm losing my mind. I still have to lay down quite a bit. I've also been told that this time around I need to do even less. Boy oh boy. I continue to visit the hospital every other day for blood work.
This continues until I have to come back to the hospital. This time around it was for my 2nd cycle of chemo, I came back on Day 22, which resets to Day 1. After I finish this cycle, God willing I will begin the transplant process.
Other Stuff
I lost my hair. I mean really, really lost it. It started to go this past Wednesday and by Saturday I had so many totally bald bald spots that Michael had to buzz it for me. It took me so much by surprise because last time it took so long to finally begin to fall out and then when it did, while quite a bit came out and I had to buzz it, it never came out in huge totally bald patches. I mean I would run my hand through my hair and it was like a bunch of gorgeous Italian babies first haircuts were caught between my fingers. My pillow was absolutely coated. It was gross. So Michael buzzed me and now I have a few very small patches of stubble, each about the size of quarter, all floating in a see of pale smooth scalp that has never seen the sun.
My goals for tomorrow (Cycle Day 3):
1. Shower and wear my bareMinerals.
2. Wear real clothes and not pajamas until after Mass (around 1pm)
3. Pray in the morning and evening.
4. Possibly walk 33 laps if I can do it before Mass (this may be ill advised, we'll see)
5. Visit with some friends in the afternoon.
6. Eat appropriately.
So that's it, an update and a "what to expect" for any cancer patients getting ICE chemo who may visit hear.
I have a few quick requests for you:
1. My brother in law Nate is participating in the Ride for Roswell, which is a wonderful fundraiser for Roswell Park Cancer Institute, the hospital where I'm being treated. He is dedicating his ride to me and my family. I'm humbled. His fundraising page can be found here. If you are able and feel moved to do so, please send a few bucks his way. It is a very worthy cause.
2. Local friends have asked about donating blood and platelets for use in my treatment. Last cycle I made it without transfusions of any kind but this time I'll definitely need at least one. If you are local and would like to donate blood or platelets please go here, to the website of the Roswell Park Donor Center. I am type A+ so if you have a compatible blood type with me you can do a regular donation. If your blood type is not compatible you can still donate platelets. Both are hugely helpful. I was borderline for both types of transfusions this past cycle and just made it without them.
3. Finally, if you have a prayer intention could you leave it in the comments? If it is something private you can just write Private Intention. I'd like to pray for you and offer some of this up for you. If you'd prefer to email your intention to me at nellakat at gmail dot com, that's fine too.
Thank you for your continued prayers and support. I thought I'd be able to write more but it's hard to write when you can't sit up. I hope to update you again soon.
ICE Chemotherapy: What to expect in a cycle.
Day 1:
Easy. I actually came into the hospital in the evening this time and started my chemo at around 2am. This was only the second time my port has been accessed and it makes me really nervous. I took Ativan before I came to the hospital this time to chill me out a bit and to help me handle the taste of the saline when they flush my lines and it seemed to really help a lot. My actual chemo not including pre-meds (steroid, anti-nausea) was only a 2 hour bag so I was able to sleep pretty well, the nurses aids are great about doing my blood pressure, pulse ox, and temperature even if I'm asleep if they can get to my arm which is nice.
Day 2:
Easy. I was able to eat well, walk 33 laps around my wing (which equals a mile), have a wonderful visit with a very dear friend and 2 visits from my husband. I also took a shower and dressed in real clothes so I could visit with my friend OUTSIDE in the hospital courtyard which was so nice. Tonight I get all 3 of the chemo drugs in my protocol. One of them runs for 24 hours and it's difficult. Really difficult. It smells so bad, just when it hangs in the bag, before you're even hooked up. I'm not sure if I can taste it when I'm getting it but I'm pretty sure I can, even after I leave the hospital. Guess why it's so stinky...did you guess? It's derived from mustard gas. I know. A bunch of my "pharmaceuticals are the devil" readers just passed out. Anyway, I have to be hooked up to that from 5am to 5am. That's my fun with WMD. I also have the 2 hour bag I had last night and another 1 hour bag of something else. Which means day 3 isn't exactly a barn burner in the productivity department.
Day 3:
I'll be hooked up to the mustard gas all day and all night today. It will be gross and my appetite will suffer. I have to force myself to eat the best I can because last cycle I lost a lot of weight. I lost about 7 pounds, which I really don't have room to lose. I rallied in the following weeks, but I didn't manage to get it all back before I came back here to start the new cycle. It' really important that I maintain my weight to the best of my ability in order to give myself every advantage going into the transplant because I'll definitely lose weight when I start that super chemo and the ensuing process. At my hospital there is Mass at noon on Wednesdays so I will be going. By the time I get back my day is pretty much over. I get in bed and I'm pretty useless.
Day 4:
Today I pack up my stuff, get cleaned up, and wait to be discharged. When I get home I go to bed and I sleep almost solid until day 6 or even into Day 7. I get up to (hopefully) eat, drink water, and use the bathroom.
Day 5:
I forgot to say that on Day 5 I go to the hospital to get a Neulasta shot. It's really hard to go to the hospital because I'm so tired. I get home and day over and like I mentioned above under Day tomorrow and possibly the next day over.
Day 7:
Hopefully I wake up this morning and can get out of bed to go to Doughnut Party at my parents as long as nobody is sick. I get to sit at the table with my family and possibly eat a bit of toast. Then I go home and straight back to bed. I still mostly sleep, but I'm getting into a weird status where I'm to weak to sit up or move but my mind is very awake. I end up watching a lot of TV on my computer.
Day 8:
Back to the hospital today for bloodwork. I spend the whole time praying that I don't need a transfusion. Unfortunately this cycle it won't be a question of if, but when. Blech. Then I hopefully go home, go back to bed. I try to read to the kids in short spurts while I have enough energy.
Day 9-12:
I alternate between hospital free days and hospital days for blood work. I get a bit more energy each day but all that means at this point is that my eyes are open more than they're closed and the kids can come in my room more if they're healthy, they've changed their clothes, and washed their hands. My appetite is beginning to improve and I don't require Zofran to control my nausea anymore.
Day 13:
Watch out! I spend most of the day sitting up in the DOWNSTAIRS OF THE HOUSE as long as everyone is healthy. I even eat some of my meals in the kitchen with my family.
Day 14:
Back to my parents' house for Doughnut Party, more sitting up like a person and even walking around a bit. I beginning to get a tad full of myself. My appetite is improving but I still have to get into bed by 6:30 pm or so.
Day 15:
I am now officially big for my britches (figuratively) and have commenced doing more than I should because I'm feeling guilty and I'm losing my mind. I still have to lay down quite a bit. I've also been told that this time around I need to do even less. Boy oh boy. I continue to visit the hospital every other day for blood work.
This continues until I have to come back to the hospital. This time around it was for my 2nd cycle of chemo, I came back on Day 22, which resets to Day 1. After I finish this cycle, God willing I will begin the transplant process.
Other Stuff
I lost my hair. I mean really, really lost it. It started to go this past Wednesday and by Saturday I had so many totally bald bald spots that Michael had to buzz it for me. It took me so much by surprise because last time it took so long to finally begin to fall out and then when it did, while quite a bit came out and I had to buzz it, it never came out in huge totally bald patches. I mean I would run my hand through my hair and it was like a bunch of gorgeous Italian babies first haircuts were caught between my fingers. My pillow was absolutely coated. It was gross. So Michael buzzed me and now I have a few very small patches of stubble, each about the size of quarter, all floating in a see of pale smooth scalp that has never seen the sun.
My goals for tomorrow (Cycle Day 3):
1. Shower and wear my bareMinerals.
2. Wear real clothes and not pajamas until after Mass (around 1pm)
3. Pray in the morning and evening.
4. Possibly walk 33 laps if I can do it before Mass (this may be ill advised, we'll see)
5. Visit with some friends in the afternoon.
6. Eat appropriately.
So that's it, an update and a "what to expect" for any cancer patients getting ICE chemo who may visit hear.
I have a few quick requests for you:
1. My brother in law Nate is participating in the Ride for Roswell, which is a wonderful fundraiser for Roswell Park Cancer Institute, the hospital where I'm being treated. He is dedicating his ride to me and my family. I'm humbled. His fundraising page can be found here. If you are able and feel moved to do so, please send a few bucks his way. It is a very worthy cause.
2. Local friends have asked about donating blood and platelets for use in my treatment. Last cycle I made it without transfusions of any kind but this time I'll definitely need at least one. If you are local and would like to donate blood or platelets please go here, to the website of the Roswell Park Donor Center. I am type A+ so if you have a compatible blood type with me you can do a regular donation. If your blood type is not compatible you can still donate platelets. Both are hugely helpful. I was borderline for both types of transfusions this past cycle and just made it without them.
3. Finally, if you have a prayer intention could you leave it in the comments? If it is something private you can just write Private Intention. I'd like to pray for you and offer some of this up for you. If you'd prefer to email your intention to me at nellakat at gmail dot com, that's fine too.
Thank you for your continued prayers and support. I thought I'd be able to write more but it's hard to write when you can't sit up. I hope to update you again soon.
Wednesday, March 5, 2014
On Ash Wednesday, Would You Pray For Them?
I don't have much to say today, except to ask you prayers for some of God's children.
The entire Western New York community has heavy hearts this week, as we learned that Ben, a little boy I've mentioned here previously, has weeks to live. Despite surgery and initial treatment his brain tumor has grown so inexplicably that he has been sent home to spend his last days in peace surrounded by his family. The grace and strength that Ben's mother has shown through this ordeal are nothing short of a call to action for the Body of Christ. We may want to cry and wallow in the unfairness, but if Mindy can find the strength to rise to this challenge, we must find the strength to pray her through it. Please pray for this family. If you feel called to do so, please donate to help them or for information about attending Ben's benefit.
I mentioned another child facing brain cancer here once before. My friend Jeff's little girl was diagnosed with brain cancer around the same time as Ben. Please pray for Ava and her Dads as they begin the arduous treatment process.
Finally, a friend of mine from college contacted me recently to let me know that she has been diagnosed with breast cancer. Her cancer is in stage one and is very treatable. Regardless of the great prognosis the treatment will be difficult and she has 4 small kids. Please pray for Sweetie.
You may read this list and feel hopeless and helpless, and you are. But God is not. Please join me in praying that His will be done and His children be comforted. Ben and his family, Ava and her family, and dear Sweetie and her family will benefit from them.
The entire Western New York community has heavy hearts this week, as we learned that Ben, a little boy I've mentioned here previously, has weeks to live. Despite surgery and initial treatment his brain tumor has grown so inexplicably that he has been sent home to spend his last days in peace surrounded by his family. The grace and strength that Ben's mother has shown through this ordeal are nothing short of a call to action for the Body of Christ. We may want to cry and wallow in the unfairness, but if Mindy can find the strength to rise to this challenge, we must find the strength to pray her through it. Please pray for this family. If you feel called to do so, please donate to help them or for information about attending Ben's benefit.
I mentioned another child facing brain cancer here once before. My friend Jeff's little girl was diagnosed with brain cancer around the same time as Ben. Please pray for Ava and her Dads as they begin the arduous treatment process.
Finally, a friend of mine from college contacted me recently to let me know that she has been diagnosed with breast cancer. Her cancer is in stage one and is very treatable. Regardless of the great prognosis the treatment will be difficult and she has 4 small kids. Please pray for Sweetie.
You may read this list and feel hopeless and helpless, and you are. But God is not. Please join me in praying that His will be done and His children be comforted. Ben and his family, Ava and her family, and dear Sweetie and her family will benefit from them.
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