Hey everyone. Everything has been such a blur over the past few days so I'll put as much as I can remember.
Day +4: Was an ok day. My WBC were at 0.19 and all of my other counts looked ok. I couldn't eat anything because I couldnt swallow because of the mouth sores. I felt ok otherwise. That is reallly all that I can remember from that day.
Day +5: I cant remember what all happened that day but I can tell you that it was one of my low days because my WBCs were at 0.09.
Day +6: On this day I had to get platelets because mine were too low at 26.8. My WBC hit their lowest point at 0.07. I really dont remember what all went on this day. I know that I couldn't eat because of the sore mouth. and was literally drained of all energy. Mark left on this day to go home to take care of a few things and to spend time with Allie. Mama came over to stay with me.
Day +7: This day my WBC was .11. Starting to come up a little bit. All that I know is that I was feeling bad and couldn't eat. Also, on all of these days I was walking at least once or twice to get a little bit of exercise. And I have to do mouth care 3-4 times a day. The doctors all said that it helps get out of the hospital quicker. I think this was the day that I let mama shave my head. My scalp began to hurt pretty bad and my hair was coming out onto the pillow and when I would shower. She used her clippers to shave it using the #1 blade. That made things a lot easier and my scalp didn't hurt near as much.
Day +8: This day my WBC was .13. Still coming up but not by much. I don't remember much about this day other than the crappy stuff.
Day +9: This day mama went back home and Mark came back to be with me. Mama left pretty early in the day and I slept until Mark got here around 5:00pm. My WBC was 0.22. Slowly coming up.
Day +10: My WBCs were .85, nearly quadrupling from the day before. This is the day they call engraftment. This means that my stem cells have made it to my bone marrow and are now making new cells.
Day +11: This day my WBC jumped all they way to 2.91. My hemoglobin was 6.7 so I had to recieve a unit of blood. They transfuse if it is less than 7. I started to feel a little better this day. My tounge and throat started to produce a lot of secretions and the old skin started to peel off. I was able to eat a little this day.
Day +12: My WBCs were a whopping 6.23 on this day. My mouth was a lot better on this day, all new skin on my tongue and I could swallow without it hurting so bad. I ate cherrios for breakfast and then a little mashed potatoes for dinner. I was feeling much better this day. The docs told me today that all of the antibiotics especially the Zosyn and Vancomycin had done a number on my kidneys. Thankfully they said the damage was reversible but it would take a few days of watching the numbers to get them flushed out and back to working properly.
Day +13: Today was a good day all in all. My WBC are 4.61 and all other numbers look good. My kidneys still aren't looking the best but the Creatinine shows to be leveling out and the doctors think that they will soon clear themselves. They gave me a bag og IV Sodium Bicarb tonight to hopefully help the kidneys flush themselves. The good news is that the doctors have plans on discharging me tomorrrow if all of my numbers look good in the morning. I pray they do because I'm so ready to get out of here and see my sweet Allie. The plans are for her and Nana to come over tomorrow and we have gotten a hotel for 4 days. I have to stay in Birmingham for another 1-2 weeks for daily clinic visits to check my numbers and make sure everything looks ok. When Allie and Nana go back home we will stay at the townhouse until I'm released to go home home (back to Columbus).
I want to thank you all for the support and prayers throughout this whole process. It means the world to me. I feel much better although I am still pretty weak and get fatigued very easily. I have basically no appetite or desire for food but eat because it will make me stronger (and my tummy lets me know its hungry). I pray that this is the end of my journey with cancer and I can go on to live the rest of my life without worrying about that. Thank you all again for the overflowing prayers and support. Much love to all of you.
Thursday, January 19, 2012
Sunday, January 8, 2012
Day +1, Day +2, Day+3
Day +1 was pretty much uneventful. I felt pretty good and was about to eat a little grits and drink a naked juice. I haven't gotten the expected mucositis. I think it will be here soon as my mouth is mildly tender and I'm having really thick saliva. All signs pointing to mouth sores. No bad nausea today. Was able to do my walking around the unit. Daddy and Sandi came to visit. It was nice to see them but I hurt a little inside to see them go. My WBCs are still stable at 5.32 (normal is 4-11) Dr. Shelton says that the steroids I got during transplant yesterday could of causes the increase in the WBCs but they would definitely drop in the coming days. 
Day +2 Another uneventful day. Mama and Meagan came to see me around lunch time. It was nice to see them and I wish they could of stayed longer. I was very happy to have company. We had a good time while they were here. We played UNO and it was fun watching us alter the rules and get competitive. I enjoyed that. Before they left, Meagan walked the halls with me for a bit. After they left, Mark went to the gym and I took a nap. My WBCs were 1.4 and now I'm considered neutropenic. I have to wear a mask whenever I'm out of my room to keep me from breathing in any germs. I also had to get some Potassium IV and was hooked back up to continous fluids to keep me from getting dehydrated. 
Day +3 Today has been a good day! We woke up and listened to some music and ordered breakfast. I had a little bit of grits and Mark had his 4 hard boiled eggs and oatmeal. I then took a much needed walk around the unit and just hung out a little. Dr. Shelton stopped by see us and she said I was doing well but that I would get more Potassium today. My eyes have been bother me when I tried to read close up, like a text or small writing. She looked in both eyes with and said they look like the text book lol. We are assuming that it is a side effect of one of the chemos that will go away with time. Or it could be associated with my WBC counts dropping drastically to 0.25 today. I also was started on my Neupogen shots today to help my body to produce more wbcs. Mark went to they gym but he just called to see what I wanted to eat from Cracker Barell. Never in a million years would i think the he would like Cracker Barrell. I think it is one of his favorites now. We have eaten there the past 3 nights. I'm not complaining but he has been here for me anb I could'nt ask for a better husband. And it's so much better than the cafeteria food here :)Saturday, January 7, 2012
Transplant Day - Day 0
Transplant day started off as any other....I got sick, go figure. I didn't eat much because of the nausea and just felt blah. Around 10:00, the nurse brought this cyclinder like thing into my room. My stem cells were inside there. My WBCs were at 3.12, not as low as they will get in the coming days. Before they started, I took a few laps around the unit and then they began.
I was given some premeds to keep me from having a reaction to the preservative that they use. The drugs were Benadryl, Demerol, and Solumedrol. That knocked me off of my feet as well. I slept during pretty much the whole process (it only took 30 minutes to transfuse) and until about dinner time. When I woke up I felt refreshed and 10 times better than I did before the transplant.
Now is just the watch an wait period. My blood cells will eventually over the next few days plummitt to near nothing. Then gradually they will start replenishing themselves with the helps of my newly transfused stem cells. I am so happy that the transplant went well. I've been told what to expect in the days to come but I pray that it will go by a smoothly and fast as possible. I've been ready be done with the big C word and I pray that this is it and our relationship is over!!! |
| My Re Birthday sign from the BMT team! |
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| Re Birthday Cake from the staff |
Wednesday, January 4, 2012
Day -3, Day -2, Day -1
Day -3 began with Mama and I waking up and ordering breakfast. Around lunch I got my 2nd dose of Thiotepa. I just rested while it was infusing. It was pretty much and uneventful day. Other than, my right Chestwall Hickman catheter started giving me a little trouble. The area around it began to swell a little compared to the other side and when the IV fluids were infusing there was a weird feeling. They disconnected that line and have only been using the left hickman since. Dr. Shelton ordered a chest X-ray and Ultrasound of the area. I also got to skype with Mark and Allie. Made my night!! I love that little girl so much!
Day -2: I woke up with the worst nausea that I have ever had. I vomitted a few times but I felt better afterwards. I got the chemo Mephalan 1/2 and it went well. The infusion was only about1 hour total. I have been told by many to suck on ice or popsicles while recieving the med and so I did for about half of the infusion. The reason for this is that the cold decreases the amount of blood flow to the mouth, this decreasing the amount of the chemo that the mouth gets. In turn this is suppose to help prevent the mouth sores. Only time will tell. It was determined by chest X-ray that the hickman catheter tip was in the right spot but there is a clot. Therefore, I have been started on a blood thinner, Lovenox. It will help to prevent any new clots from forming. I was also given many different medicines to try to combat the nausea that lasted pretty much all day. I was able to keep down some mashed potatoes and jello for dinner. I went to bed pretty early.
Day -1: Today began with nausea yet again. I got sick once i woke up but felt better afterwards. I hate Nausea with a passion and I wish it would just go away. I had a quarter of a bagel the slept. I also got my 2nd dose of Mephalan today. Mama went home today and Mark came back over to stay the next week or so. As soon as he got here I drank my Naked Juice and ate 3 peanut butter crackers then went on a walk. The hardest part so far is being away from home and my Allie. The nausea and crappy feeling suck too. I have to keep reminding myself that I can do this and I have to do this! NO turning back now. Transplant day is tomorrow Jan 5,2012. Please everyone say a prayer that everything goes well and this process is over sooner than later. Much Love.
Day -2: I woke up with the worst nausea that I have ever had. I vomitted a few times but I felt better afterwards. I got the chemo Mephalan 1/2 and it went well. The infusion was only about1 hour total. I have been told by many to suck on ice or popsicles while recieving the med and so I did for about half of the infusion. The reason for this is that the cold decreases the amount of blood flow to the mouth, this decreasing the amount of the chemo that the mouth gets. In turn this is suppose to help prevent the mouth sores. Only time will tell. It was determined by chest X-ray that the hickman catheter tip was in the right spot but there is a clot. Therefore, I have been started on a blood thinner, Lovenox. It will help to prevent any new clots from forming. I was also given many different medicines to try to combat the nausea that lasted pretty much all day. I was able to keep down some mashed potatoes and jello for dinner. I went to bed pretty early.
Day -1: Today began with nausea yet again. I got sick once i woke up but felt better afterwards. I hate Nausea with a passion and I wish it would just go away. I had a quarter of a bagel the slept. I also got my 2nd dose of Mephalan today. Mama went home today and Mark came back over to stay the next week or so. As soon as he got here I drank my Naked Juice and ate 3 peanut butter crackers then went on a walk. The hardest part so far is being away from home and my Allie. The nausea and crappy feeling suck too. I have to keep reminding myself that I can do this and I have to do this! NO turning back now. Transplant day is tomorrow Jan 5,2012. Please everyone say a prayer that everything goes well and this process is over sooner than later. Much Love.
Sunday, January 1, 2012
Day -6, -5, -4
Day -6 cont.... After finishing my infusion of Busulfan on Day -6, we went back to our hotel to get Allie and took a trip to the Birmingham Zoo. Allie loved it! We got there at around 3:00 and it closed at 4:00 so we didn't have much time. However, we were able to see a lot of the animals and it was enough for an almost 2 year old to take in. She kept waving and saying "hey" to each different animal. It was so much fun watching her. We hope to take her back once I get out of the hospital and we have the whole day to spend there. That night we just relaxed and ordered a pizza. It was nice to just be able to sit back and enjoy the evening. 
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| Mark and I decorated my room!! |
Friday, December 30, 2011
Day -8, -7, -6
Day -8 was considered a "rest day" so Mark and I just enjoyed the day. We slept late and then had a late breakfast at Cracker Barrell. We shopped around a little and got some things done. Target, Hobby Lobby, Dicks, Walgreens, etc. At 330 we saw the new Mission Impossible Movie which was pretty good if you like action movies. We finished off dinner at Pizza Hut. It was a pretty good day of just being out and about and hubby and me tme.
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| At Outpatient BMT getting my chemo |
Day -7: Yesterday we had to be here at the BMT unit early to get my 2nd dose of Busulfan. It went well. I started out with my premed of Zofran IV and then the Busulfan went in over 3 hours and I got to go home. I forgot to mention the horrendous reaction that I had to the tegaderm where my right hickman line is. My skin is all red and blistered. I took the dressing off and refuse to wear another one. Hopefully it will get better. When we left the BMT unit we headed to our hotel The Hyatt Place where Nana, Jeannie, and Allie were waiting on us. Allie was standing just inside the hotel with Nana and she smiled from ear to ear when she saw us and I hugged her so tight. So happy to see my baby. We spent the night playing and then went and had dinner at the Cheesecake Factory. It was a nice night and I really enjoyed spending it with my family and especially sweet Allie. Before going back to the hotel we stopped at Walgreens and got some Eucerin cream to put on the rash. Hopefully, that will do the trick!
Day -6: We are here at the BMT unit now, my 3rd dose of Busulfan is infusing as I type. No bad side effects now. A little nausea at times that I can handle but mainly the Ativan makes me feel woozy and a little out of it. I've only got about 30 minutes left of the 3 hour infusion. We plan on taking Allie to the Birmingham Zoo if we have time today. I think she would love that. I will blog more about that next time.
Tuesday, December 27, 2011
Outpatient Chemo for SCT Day -9
Hey Peeps! Today begins my outpatient chemo portion of this process. My day didn't quite start as I had hoped. First,we woke up late, like 3 hours late. OOPs...I was extremely tired from cleaning and packing all day yesterday. I set my alarm at 4am to take my scheduled Ativan (seizure prophylaxis bc the Busulfan can cause seizures) and woke up on time for that. I also set it for 5am but somehow hit the snooze and went back to sleep. It was no big deal when I called the BMT unit, they said just come on over.
BTW, Leaving Allie was one of the hardest things I've ever had to do. She just held onto me so tight and was crying right along with me. I love that little girl so much. She is my whole world. Nana and Meagan came to pick her up and that helped me a lot. I know she will have a great time playing with everyone and I'll skype with her as much as possible. I just miss her so much already..
On another note....
Upon arrival, I had blood drawn, IV fluids started, and saw Dr. Salzman. She is a very nice doctor. I started my first dose of Busulfan around 130pm. It was a 2 hour dose but then I have had to have labs drawn after it was finished and every hour until 730. This helps them to see how my body metabolizes the medicine and so they can make each of my other doses specific to me. Make sense?
Anyway, today is considered Day -9......We count backward to transplant day which is Day 0 and then we count it + days after transplant. My hope is to be out of the hospital by day +10 - +14. We will seee. I'll update again soon ! :)
BTW, Leaving Allie was one of the hardest things I've ever had to do. She just held onto me so tight and was crying right along with me. I love that little girl so much. She is my whole world. Nana and Meagan came to pick her up and that helped me a lot. I know she will have a great time playing with everyone and I'll skype with her as much as possible. I just miss her so much already..
On another note....Upon arrival, I had blood drawn, IV fluids started, and saw Dr. Salzman. She is a very nice doctor. I started my first dose of Busulfan around 130pm. It was a 2 hour dose but then I have had to have labs drawn after it was finished and every hour until 730. This helps them to see how my body metabolizes the medicine and so they can make each of my other doses specific to me. Make sense?
Anyway, today is considered Day -9......We count backward to transplant day which is Day 0 and then we count it + days after transplant. My hope is to be out of the hospital by day +10 - +14. We will seee. I'll update again soon ! :)
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| Gotta have a little fun :) |
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| Always by my side |
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| 1st day of chemo shot :) |
Friday, December 16, 2011
Transplant Day = Jan 5, 2012
We had a slight change of plans for my upcoming treatment. After signing my consents to received the high dose chemo and for transplantation, Melissa reviewed my final schedule with me. Everything had to be pushed back 1 week because one of the meds that I will get (Thiotepa) has to come from Australia. They want to make sure that they have it in the hospital before the procecss starts. That was fine by me because the change in schedule would allow me to be home for Christmas. I have to get a 4th dose of SGN next Monday because of the delay but I'm content with that as it got me into remission and I want to take every scheduled dose until I start my transplant chemo. On Tuesday, I will have my 2nd hickman line placed on the right side. I did ok with the first one, its just a little sore now. Below is the schedule change:
Mon Dec 19- SGN tx #4
Tues Dec 20- 2nd Hickman line placed
Tues Dec 27- Start outpatient chemo
Sat Dec 31- Admit to BMT Unit to finish chemo
Thurs Jan 5- Transplant Day!!!
Mon Dec 19- SGN tx #4
Tues Dec 20- 2nd Hickman line placed
Tues Dec 27- Start outpatient chemo
Sat Dec 31- Admit to BMT Unit to finish chemo
Thurs Jan 5- Transplant Day!!!
Sunday, December 11, 2011
Bone Marrow Transplantation Plans and Schedule
Hey Peeps!! So, Mark and I met with Dr. Shelton and she was very happy with the results of my scan. She said that it is definitely time to move forward to transplant as soon as possible.
This past week I went in and had pre-transplant scans...Tons of blood work, a Chest XRay, MUGA scan, Pulmonary funtion test and Darn ABG. These are all very important so that we know my baseline before recieving the high dose chemotherapy.
The regimen I will recieve is called Bumeltt (Busulfan, Mephalan, and Thiotepa). It is supposed to be a great regimen for Relapsed/Refractory Hodgkin's with an autologous transplant following. I found some great research about this regimen compared to all others. Below is the research link if you'd like to check it out.
http://www.facebook.com/l.php?u=http%3A%2F%2Fash.confex.com%2Fash%2F2011%2Fwebprogram%2FPaper43879.html&h=iAQGCfm6OAQHwk-2tE-_3kxDfrhgIYOR5b7Golgx8L_h1kw
If you're wondering why I have to do this after I've achieved remission, the reason is simple. I have relapsed before when we thought the disease was gone. This means that there were tiny tiny Hodgkin's cells still floating around in my body that were so small that they were undetectable in scans. The same could happen again even though I am in Complete Remission. Me being in Remission only helps my chances for a successful transplant. The high dose chemo is designed to kill off any residual Hodgkin's cells that may be undetectable. The transplant's purpose is to help my body recover from the effects of the high dose chemotherapy. I have to do this to increase my chances of never relapsing again.
Below is a schedule of upcoming appointments and the bone marrow process.....
Weds. Dec 14- Meet with the BMT team, sign consents, and review scans
Thurs. Dec 15- Port removed from Right Chest wall and 1st Hickman IV line placed in Left Chest wall
Mon. Dec 19- 2nd Hickman IV line placed in Right Chest wall
Tues. Dec 20- Begin high dose chemotherapy outpatient
Sat. Dec 24- Admit to hospital to finish the next 5 days of high dose chemotherapy
Thurs. Dec 29- TRANSPLANT DAY
After my stem cells are given back to me on Transplant Day, we just watch and wait for my cells to engraft and start to produce new ones in my bone marrow to spread throughout my body. This is a long process and can take weeks to occur. Hopefully it will go by quickly.
It sucks to be in the hospital on Christmas but I can't complain because I think it's God's gift to me, A second chance at life. So for that, I am thankful.
Allie can't visit me while in the hospital because she is too young but we will skype daily. She is coming to Birmingham for a few days before I am admitted so I can spend that time with her. I think being away from her will be the hardest part but I'm glad that she is too young to know what is going on or to remember. She is my heart and I am so blessed to have her.
Thanks to everyone for your continued support and prayers. We are hoping and praying that this is it and we can gain a CURE from this! I'll keep you all updated throughout the whole process, I can't promise everyday but I'll keep you posted as much as I can. Much love.
This past week I went in and had pre-transplant scans...Tons of blood work, a Chest XRay, MUGA scan, Pulmonary funtion test and Darn ABG. These are all very important so that we know my baseline before recieving the high dose chemotherapy.
The regimen I will recieve is called Bumeltt (Busulfan, Mephalan, and Thiotepa). It is supposed to be a great regimen for Relapsed/Refractory Hodgkin's with an autologous transplant following. I found some great research about this regimen compared to all others. Below is the research link if you'd like to check it out.
http://www.facebook.com/l.php?u=http%3A%2F%2Fash.confex.com%2Fash%2F2011%2Fwebprogram%2FPaper43879.html&h=iAQGCfm6OAQHwk-2tE-_3kxDfrhgIYOR5b7Golgx8L_h1kw
If you're wondering why I have to do this after I've achieved remission, the reason is simple. I have relapsed before when we thought the disease was gone. This means that there were tiny tiny Hodgkin's cells still floating around in my body that were so small that they were undetectable in scans. The same could happen again even though I am in Complete Remission. Me being in Remission only helps my chances for a successful transplant. The high dose chemo is designed to kill off any residual Hodgkin's cells that may be undetectable. The transplant's purpose is to help my body recover from the effects of the high dose chemotherapy. I have to do this to increase my chances of never relapsing again.
Below is a schedule of upcoming appointments and the bone marrow process.....
Weds. Dec 14- Meet with the BMT team, sign consents, and review scans
Thurs. Dec 15- Port removed from Right Chest wall and 1st Hickman IV line placed in Left Chest wall
Mon. Dec 19- 2nd Hickman IV line placed in Right Chest wall
Tues. Dec 20- Begin high dose chemotherapy outpatient
Sat. Dec 24- Admit to hospital to finish the next 5 days of high dose chemotherapy
Thurs. Dec 29- TRANSPLANT DAY
After my stem cells are given back to me on Transplant Day, we just watch and wait for my cells to engraft and start to produce new ones in my bone marrow to spread throughout my body. This is a long process and can take weeks to occur. Hopefully it will go by quickly.
It sucks to be in the hospital on Christmas but I can't complain because I think it's God's gift to me, A second chance at life. So for that, I am thankful.
Allie can't visit me while in the hospital because she is too young but we will skype daily. She is coming to Birmingham for a few days before I am admitted so I can spend that time with her. I think being away from her will be the hardest part but I'm glad that she is too young to know what is going on or to remember. She is my heart and I am so blessed to have her.
Thanks to everyone for your continued support and prayers. We are hoping and praying that this is it and we can gain a CURE from this! I'll keep you all updated throughout the whole process, I can't promise everyday but I'll keep you posted as much as I can. Much love.
Saturday, December 10, 2011
Glory to God in the Highest
On November 28th we headed to Birmingham for my 3rd SGN treatment. We waited forever in the infusion area and then got to the back. I was stabbed in the chest (my port accessed) and then the infusion began. Dr. Forero came in to see me and said he definitely wanted to do the PET scan sceduled the following day. He said to me, "What would you do if I told you tomorrow that you are in complete remission?" I just smiled and said, "I would cry"....He seemed to have high hopes for a remission and it sounded good but after relapsing and not responding to therapy something inside makes you hesitant to believe it is too good to be true. He told me to stop by his office after my scan the next day and he would give me the results.
Mark and I went to our hotel and I took a much needed nap. We had a great night out to eat at our favorite restaurant, The Cheesecake factory. We shopped for a little while and then headed back to our hotel for the night. It was very cold that night and was actually supposed to snow.
The next morning there was no snow on the ground. We head to our 1030 PET scan appointment. After it was finished I had my CT scan. Then we headed to Dr. Foreros office for my results. They weren't in when we first got there and so we waited.....and waited. Finally, Dr. Foreros nurse Jenny came and said we could come back. Dr. Forero was standing by his computer with my results pulled up. He smiled and pointed to the screen and said read. I was shaking uncontrolably and my heart was pounding out of my chest. I read those words over and over again and the tears were flowing. It said, "NO EVIDENCE OF METABOLIC LYMPHOMA NOTED." I hugged Dr. Forero so tight and cried and cried. Tears of Joy....I looked at Mark and his eyes were teared up as well. Dr. Forero said, "Anita, you are in Complete remission my dear, it is gone". That was one of the best days of my life. God is so good and I give all glory and honor to him.
We then discussed what was next.....my autologous bone marrow transplant. He wanted it scheduled ASAP and so we decided to stay another night and meet with the BMT doctor, Dr. Shelton in the morning.
As much as I dread having that horrific high dose chemotherapy and transplant...I see an end in sight. A new healthy me......Thank you Lord...
Mark and I went to our hotel and I took a much needed nap. We had a great night out to eat at our favorite restaurant, The Cheesecake factory. We shopped for a little while and then headed back to our hotel for the night. It was very cold that night and was actually supposed to snow.
The next morning there was no snow on the ground. We head to our 1030 PET scan appointment. After it was finished I had my CT scan. Then we headed to Dr. Foreros office for my results. They weren't in when we first got there and so we waited.....and waited. Finally, Dr. Foreros nurse Jenny came and said we could come back. Dr. Forero was standing by his computer with my results pulled up. He smiled and pointed to the screen and said read. I was shaking uncontrolably and my heart was pounding out of my chest. I read those words over and over again and the tears were flowing. It said, "NO EVIDENCE OF METABOLIC LYMPHOMA NOTED." I hugged Dr. Forero so tight and cried and cried. Tears of Joy....I looked at Mark and his eyes were teared up as well. Dr. Forero said, "Anita, you are in Complete remission my dear, it is gone". That was one of the best days of my life. God is so good and I give all glory and honor to him.
We then discussed what was next.....my autologous bone marrow transplant. He wanted it scheduled ASAP and so we decided to stay another night and meet with the BMT doctor, Dr. Shelton in the morning.
As much as I dread having that horrific high dose chemotherapy and transplant...I see an end in sight. A new healthy me......Thank you Lord...
Saturday, November 26, 2011
SGN tx 1& 2
It's been a while since I updated on here so I decided to write a quick blog. I'm sorry for not keeping it updated as I should but promise to do better. Life has been good! I've been enjoying my family and friends and getting ready for the holidays.
Here's an update on my status:
I had my first SGN treatment on October 17th. It went VERY well. This medicine is tumor specific so it tends to spare many of the healthy cells thus less side effects. I only had one bad day and it was very tolerable. I was just very achy all over. The 2nd SGN treatment was on November 7th. It was a breeze as well. No side effects at all.
I'm very thankful for doing so well with this drug so far. I have a tiny bit of neuropathy that I notice from time to time but it's not bad at all. I have my next treatment this coming up Monday (Nov 28) and then a PET scan and CT on Tuesday. These will tell us how the medicine is working. I have high hopes for it to work and pray for a complete remission. It's statistics are great with 75% of patients responding to the medication and I think about 30% of those achieving a complete remission. This scan will tell us if I'm where I need to be for transplant or if I need to recieve more of this medicine.
I'm very anxious about the scans coming up. I think I'm just ready to know what the results are. Its so nerve racking. Thanks everyone for the continued prayers and support and I'll keep you all posted. Much love!
Here's an update on my status:
I had my first SGN treatment on October 17th. It went VERY well. This medicine is tumor specific so it tends to spare many of the healthy cells thus less side effects. I only had one bad day and it was very tolerable. I was just very achy all over. The 2nd SGN treatment was on November 7th. It was a breeze as well. No side effects at all.
I'm very thankful for doing so well with this drug so far. I have a tiny bit of neuropathy that I notice from time to time but it's not bad at all. I have my next treatment this coming up Monday (Nov 28) and then a PET scan and CT on Tuesday. These will tell us how the medicine is working. I have high hopes for it to work and pray for a complete remission. It's statistics are great with 75% of patients responding to the medication and I think about 30% of those achieving a complete remission. This scan will tell us if I'm where I need to be for transplant or if I need to recieve more of this medicine.
I'm very anxious about the scans coming up. I think I'm just ready to know what the results are. Its so nerve racking. Thanks everyone for the continued prayers and support and I'll keep you all posted. Much love!
Sunday, October 16, 2011
MD Anderson visit
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| MD Anderson Cancer Center |
On Monday morning bright and early we got up and headed downstair for breakfast and to wait on the hospital shuttle. The hotel we were staying at offered a free shuttle to and from the hospital which was great. It saved us on parking! My appointment was at 0830 for registration and at 1000 with Dr. Fanale. I got registered and had blood work done and waited for the doctor.
Dr. Fanale was a nice doctor. She was very knowledgable and easy to talk to. She reviewed my history and asked questions. She then told us of her plan and we told her of Dr. Forero's plan. They were both great for Relapsed/Refractory Hodgkin's. Both with different thinking behind them. She totally agreed with Dr. Foreros plan and decided to give him a call to discuss what the best plan would be for my treatment. Mark and I had lunch and then returned to finish our appointment.
After speaking with Dr. Forero, Dr. Fanale told us that she agreed with his plan and we could definitely continue treatment at UAB. She also told us that if I didn't respond to this treatment or if I made it to auto transplant and relapsed again to come back. She said that there are clinical trials that she could offer me if that happened. Dr. Fanale spoke very highly of Dr. Forero. They are collegues and actually worked together on the clinical trial for the treatment I will be recieving before it was approved by the FDA in August 2011. Yes, very recent!
So, I guess you're wondering what the treatment plan is. Well, tomorrow October 17th, I will begin my first treatment of the drug SGN-35. It is an infusion that will last over 30 minutes. It is a target specific drug for cancer cells by identifying certain proteins and antibodies on the cancer cells. Therefore, sparing healthy cells. It's main side effect is peripheral neuropathy and fatigue.
I will undergo 4 cycles of this medicine. One dose every 3 weeks times 4 doses. I will have a PET scan between doses 3 and 4 to see if its working. It is said to be the best drug for Hodgkin's at the present time especially for Relapsed/Refractory. If I achieve a Complete Remission or near Complete Remission, I will head to the Autologous transplant as planned before. After the transplant, I will have Radiation.
I have high hopes for this drug and actually have a good feeling about it. Please everyone pray for my family and for God to bless the doctors and medicine. Ultimately he is the Great Physician and the healer. I ask everyone to please pray, pray hard. I thank you all in advance. Much love!
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| Shrimp Po Boy for lunch in LA |
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| Yummy Texas Waffle for Breakfast |
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| Louisiana State Line |
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| Mississippi State Line |
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| Texas State Line |
Friday, October 7, 2011
Good News.....
On Tuesday I had my repeat PET scan to determine if the questionable "spot" in the left clavicular area was still present. My PET wasn't until 4:00 CST. I wasn't really nervous just kind of go with the flow about it.
On Wednesday, my BMT Clinical Coordinator Wendy called with the results. She said that the "spot" wasn't there! This is great news! This means that the cancer is still localized in only one spot (the mediastinum or center chest) and hasn't moved to other areas of my body!
Dr. Forero gave us a call on Wednesday evening. He was very pleased with the results and happy that it is still localized. He is suggesting for me to do the SGN-35 for 2 cycles and if complete remission is achieved then we will move to the Autologus BMT. Afterwards we would do Radiation to the areas where the lymphoma was previously present.
He is also willing to work with the docs in Texas to hear different opinions and decide on the best way to treat my disease and aim for a CURE. He gave me his cell phone number to give to the doctor in Texas to have her call him. They are actually collegues and have worked on clinical trials together in the past. I'm thankful to have him as my oncologist and to know that he is willing to work with the other docs.
I'll keep everyone updated as much as possible. We are driving a dreadful 12 hour drive to Houston on Sunday. Pray for us a safe trip and a good visit with the doctors. Thanks to everyone in advance. :)
On Wednesday, my BMT Clinical Coordinator Wendy called with the results. She said that the "spot" wasn't there! This is great news! This means that the cancer is still localized in only one spot (the mediastinum or center chest) and hasn't moved to other areas of my body!
Dr. Forero gave us a call on Wednesday evening. He was very pleased with the results and happy that it is still localized. He is suggesting for me to do the SGN-35 for 2 cycles and if complete remission is achieved then we will move to the Autologus BMT. Afterwards we would do Radiation to the areas where the lymphoma was previously present.
He is also willing to work with the docs in Texas to hear different opinions and decide on the best way to treat my disease and aim for a CURE. He gave me his cell phone number to give to the doctor in Texas to have her call him. They are actually collegues and have worked on clinical trials together in the past. I'm thankful to have him as my oncologist and to know that he is willing to work with the other docs.
I'll keep everyone updated as much as possible. We are driving a dreadful 12 hour drive to Houston on Sunday. Pray for us a safe trip and a good visit with the doctors. Thanks to everyone in advance. :)
Sunday, October 2, 2011
Update
I thought I would write a quick blog to update you all on what's been going on. There has been a change in plans regarding the Stem Cell transplant. It has been put on hold for now. On Thursday 9/22, I had my pre-transplant PET scan to see the status of the disease (hoping for Complete or at least Partial remission) to proceed with transplant. The previous CT showed that the mass in my chest looked to be a very slight bit larger. However, it was so unclear because it was such a small difference that it could have been associated with the angle I was laying, movement, or the machine itself. Mark and I remained in high hopes that this was the case. Deep down inside I knew something wasn't right. It was the same feeling I had when the biopsy confirmed relapse back in May. On Friday 9/23, I received a call from an unknown 205 (Birmingham) number. When I answered the phone, Dr. Shelton was on the other end. Then and there I knew what I was about to hear wasn't going to be good news. I've learned that it's never a good thing when the doctor calls. She said that the PET scan confirmed that the mass in my chest had became slightly larger. This means that it did not respond to the mobilization chemotherapy that I had back in August. Not good at all. They are calling my disease "Refractory" now. This means that it doesn't respond to certain chemos. There was also a questionable spot in my left clavicular region where the clavicle and shoulder bone meet. She recommended to have a biopsy of that area to see if it was anything and with the results from that we will determine the treatment plan.
That was a hard day for me. Some of my best friends came over that night for a pre-planned girls night. We had a blast and it helped me to take my mind of things. The next day I felt like a new me ready for battle. That day, I made a commitment to myself and life that I would do the only thing I knew that I could do and that's to make myself stronger. I have committed to a plant-based/vegetarian diet with low sugar intake as well as very low processed foods. I have also started exercising on a daily basis. NO more wine or desserts after dinner. So far I have felt great and actually a lot healthier. I am more aware of the things that go into my body and I hope by doing this that I can help in my defeat against stupid cancer.
This past Thursday we met with the Surgeon and also a Radiation Oncologist. The surgeon decided that it wouldn't be wise to do a biopsy. First, he couldn't feel anything in the region of the suspected spot. He didn't want to be just "digging" around in there. He and Dr. Shelton decided that the best plan of action would be to do a repeat PET scan and if the spot was still there then it is pretty much indicative of new disease. The reason it is in question at all is because there was no spot on the CT and there are a lot of things that can cause a PET to be positive. They are unsure if the area is disease or if it is just inflammation, movement, etc. Sorry if I'm confusing you. Thankfully, I received the call on Friday that the insurance company approved another PET scan and so we are just waiting to schedule it now.
I also met with the Radiation Oncologist because having radiation if the cancer is localized is a huge possibility. Meaning, if the "new" spot turns out to be nothing and the only evidence of disease is in the original mass in my chest. He explained to us the process and side effects. It would be around 24 treatments, Monday through Friday. About 5 weeks. I'll go into more detail about it if it is the path chosen for us to take.
Just to through it out there. I have also spoken with Dr. Forero who is working hand in hand with Dr. Shelton and if the spot comes back positive for Hodgkin's then the next planned step would be to use a drug called SGN-35. It's supposed to be the most powerful drug for Hodgkin's. It is different than most chemos because it actually targets certain antibodies and proteins on the Hodgkin's cells therefore sparing healthy cells. It's a good drug and a likely possibility.
Anyway, I know this seems like a lot and believe me when I say that our heads have been spinning. In the midst of all of this, Mark and I have to decided that it would be wise to have a second opinion. We have made an appointment with MD Anderson in Houston, TX. It's not that we don't trust our doctors, we just think it would be a good idea to hear another voice in the matter. It is my life that's in their hands. The appointment is scheduled for October 10th and we will be there for a few days. I'm hoping to leave there with more hope and knowledge. It is said to be the best cancer center in the world.
I'll keep you all updated.
That was a hard day for me. Some of my best friends came over that night for a pre-planned girls night. We had a blast and it helped me to take my mind of things. The next day I felt like a new me ready for battle. That day, I made a commitment to myself and life that I would do the only thing I knew that I could do and that's to make myself stronger. I have committed to a plant-based/vegetarian diet with low sugar intake as well as very low processed foods. I have also started exercising on a daily basis. NO more wine or desserts after dinner. So far I have felt great and actually a lot healthier. I am more aware of the things that go into my body and I hope by doing this that I can help in my defeat against stupid cancer.
This past Thursday we met with the Surgeon and also a Radiation Oncologist. The surgeon decided that it wouldn't be wise to do a biopsy. First, he couldn't feel anything in the region of the suspected spot. He didn't want to be just "digging" around in there. He and Dr. Shelton decided that the best plan of action would be to do a repeat PET scan and if the spot was still there then it is pretty much indicative of new disease. The reason it is in question at all is because there was no spot on the CT and there are a lot of things that can cause a PET to be positive. They are unsure if the area is disease or if it is just inflammation, movement, etc. Sorry if I'm confusing you. Thankfully, I received the call on Friday that the insurance company approved another PET scan and so we are just waiting to schedule it now.
I also met with the Radiation Oncologist because having radiation if the cancer is localized is a huge possibility. Meaning, if the "new" spot turns out to be nothing and the only evidence of disease is in the original mass in my chest. He explained to us the process and side effects. It would be around 24 treatments, Monday through Friday. About 5 weeks. I'll go into more detail about it if it is the path chosen for us to take.
Just to through it out there. I have also spoken with Dr. Forero who is working hand in hand with Dr. Shelton and if the spot comes back positive for Hodgkin's then the next planned step would be to use a drug called SGN-35. It's supposed to be the most powerful drug for Hodgkin's. It is different than most chemos because it actually targets certain antibodies and proteins on the Hodgkin's cells therefore sparing healthy cells. It's a good drug and a likely possibility.
Anyway, I know this seems like a lot and believe me when I say that our heads have been spinning. In the midst of all of this, Mark and I have to decided that it would be wise to have a second opinion. We have made an appointment with MD Anderson in Houston, TX. It's not that we don't trust our doctors, we just think it would be a good idea to hear another voice in the matter. It is my life that's in their hands. The appointment is scheduled for October 10th and we will be there for a few days. I'm hoping to leave there with more hope and knowledge. It is said to be the best cancer center in the world.
I'll keep you all updated.
I'm a Survivor
I'm not gone give up
I'm not gone stop here
I'm gone FIGHT harder
I'm a Survivor
Tuesday, September 13, 2011
On the road again....
It's been a while since I've written on here so I thought I would check in with everyone. Things have been going great. We've just been enjoying life and having a good time. I have been to Panama City Beach twice since my last appointment and this past weekend we visited Mark's dad and stepmom in Southwest Florida. I have felt great and have been spending my time just enjoying being with Allie. The highlight of my life this week is that my hair has started to grow back :) I feels weird to have the stubbles but for some reason I get so excited. It will definitely come out when I have the high dose chemo but it will be fun until then.
Today was our first trip back to Birmingham since the mobilization chemotherapy. We went for the pre-transplant scans and blood work. It took forever. My first appointment was at 0830 for a Pulmonary Function test. I have had many of these and so I knew what to expect. When we arrived I was pleasantly suprised to find out that I would also need an ABG (Arterial Blood Gas). We were taught in nursing school about how to draw an ABG and read the results. We also were told how painful these could be because the blood is drawn from an artery. I have never personally drawn an ABG but have seen many patients have these done. Needless to say, I didn't want to have it. After speaking my opinion to the poor Respiratory technologist, I agreed. She attempted my left arm twice. The 1st time wasn't that bad but the 2nd stick did it for me. I became dizzy and nauseaus and clammy. Almost passing out. I felt retarded because I couldn't take it but she said that it happens regularly. She didn't get any arterial blood unfortunately and didn't stick again. After I was over my episode, we proceeded with the Pulmonary Function test.
Next we headed to a different facility to have my CT and Chest XRay. This was the first time in my history of CTs that I have not gagged at the smell and taste of the CT contrast. This time it was purple and tasted just like grape kool aid. I couldn't taste a bit of the contrast. Who ever invented this type of contrast should recieve an award. I will definetely have all of my future CTs at this facility. The CT itself was a breeze. The worst part was the IV contrast because it makes you have this warm sensation all over your body. It makes you literally feel like you are peeing on yourself. I'm used to it now. I remember when I had my first CT years ago, I freaked out and just kept telling myself to breath. The Chest XRay was a breeze also.
We then visited the BMT Unit at the hospital to have labs and cultures taken from my Permcath and Medi Port. The nurse took 15 vials of blood!! I guess they need all of that info for the pre-transplant stuff but gahhh.. About that time my clinical coordinator Wendy came in and talked to Mark and I for a bit. She said that I would have to have the ABG done again. I wasn't thrilled at all. Mitzi, the nurse who took my labs, stuck me for my ABG. This time in my right wrist. She did a wonderful job and got it on the first stick. This stick wasn't that bad. I've had IVs that hurt worse. On another note, Wendy gave Mark and I a tentative calendar with a schedule on the upcoming events. Here's a quick rundown of events. I will have sign transplant consents on the 26th and my Medi Port taken out of the 27th of this month. I will then go back on October 3rd to have my other central venous catheter (Double lumen Hickman catheter) placed in my chest where my port was previously. I will start my 10 day stretch of high dose chemotherapy on October 4th with transplant sceduled for October 14th. I'm so ready to get all of this over with so I can put it all behind me and move on with life.
We ended the day back at the Kirklin Clinic where I had a MUGA scan and EKG. The purpose of the MUGA scan it to detect any suble changes in the functioning of the heart caused by chemo. The test consisted of recieving injections of radioactive substances and then lying in a machine and having pictures taken of my heart. The EKG was normal showing a silly Sinus Arrythmia. Probably because I was talking while he was taking it. Together the tests took about 2 hours so by the time they were over we were ready to go and starving!
We only hit a few minutes of traffic and stopped at Dairy Queen for food. Wasn't my 1st choice but Mark loves it. We made it home by 8pm. Once home Mark saw on Yahoo that there was a 3.0 Earthquake in Birmingham at 5:59pm CST. Thankfully we were home by the time it happened.
That's about it on my travels for now. Thanks everyone for the continued prayers and support. I'll blog again soon :)
*I found this quote today and I love it.....
"Cancer makes a woman out of you. After that you become a warrior" ~ Danita Vance
Today was our first trip back to Birmingham since the mobilization chemotherapy. We went for the pre-transplant scans and blood work. It took forever. My first appointment was at 0830 for a Pulmonary Function test. I have had many of these and so I knew what to expect. When we arrived I was pleasantly suprised to find out that I would also need an ABG (Arterial Blood Gas). We were taught in nursing school about how to draw an ABG and read the results. We also were told how painful these could be because the blood is drawn from an artery. I have never personally drawn an ABG but have seen many patients have these done. Needless to say, I didn't want to have it. After speaking my opinion to the poor Respiratory technologist, I agreed. She attempted my left arm twice. The 1st time wasn't that bad but the 2nd stick did it for me. I became dizzy and nauseaus and clammy. Almost passing out. I felt retarded because I couldn't take it but she said that it happens regularly. She didn't get any arterial blood unfortunately and didn't stick again. After I was over my episode, we proceeded with the Pulmonary Function test.
Next we headed to a different facility to have my CT and Chest XRay. This was the first time in my history of CTs that I have not gagged at the smell and taste of the CT contrast. This time it was purple and tasted just like grape kool aid. I couldn't taste a bit of the contrast. Who ever invented this type of contrast should recieve an award. I will definetely have all of my future CTs at this facility. The CT itself was a breeze. The worst part was the IV contrast because it makes you have this warm sensation all over your body. It makes you literally feel like you are peeing on yourself. I'm used to it now. I remember when I had my first CT years ago, I freaked out and just kept telling myself to breath. The Chest XRay was a breeze also.
We then visited the BMT Unit at the hospital to have labs and cultures taken from my Permcath and Medi Port. The nurse took 15 vials of blood!! I guess they need all of that info for the pre-transplant stuff but gahhh.. About that time my clinical coordinator Wendy came in and talked to Mark and I for a bit. She said that I would have to have the ABG done again. I wasn't thrilled at all. Mitzi, the nurse who took my labs, stuck me for my ABG. This time in my right wrist. She did a wonderful job and got it on the first stick. This stick wasn't that bad. I've had IVs that hurt worse. On another note, Wendy gave Mark and I a tentative calendar with a schedule on the upcoming events. Here's a quick rundown of events. I will have sign transplant consents on the 26th and my Medi Port taken out of the 27th of this month. I will then go back on October 3rd to have my other central venous catheter (Double lumen Hickman catheter) placed in my chest where my port was previously. I will start my 10 day stretch of high dose chemotherapy on October 4th with transplant sceduled for October 14th. I'm so ready to get all of this over with so I can put it all behind me and move on with life.
We ended the day back at the Kirklin Clinic where I had a MUGA scan and EKG. The purpose of the MUGA scan it to detect any suble changes in the functioning of the heart caused by chemo. The test consisted of recieving injections of radioactive substances and then lying in a machine and having pictures taken of my heart. The EKG was normal showing a silly Sinus Arrythmia. Probably because I was talking while he was taking it. Together the tests took about 2 hours so by the time they were over we were ready to go and starving!
We only hit a few minutes of traffic and stopped at Dairy Queen for food. Wasn't my 1st choice but Mark loves it. We made it home by 8pm. Once home Mark saw on Yahoo that there was a 3.0 Earthquake in Birmingham at 5:59pm CST. Thankfully we were home by the time it happened.
That's about it on my travels for now. Thanks everyone for the continued prayers and support. I'll blog again soon :)
*I found this quote today and I love it.....
"Cancer makes a woman out of you. After that you become a warrior" ~ Danita Vance
Thursday, August 18, 2011
You can call me SUPER Woman!
So I guess the Neulasta shots paid off. I walked into the BMT unit on Monday to have labs drawn for a hopeful stem cell collection to start on Tuesday. The nurse accessed my Permcath and sent the labs for analysis. She told Mark and I that we were free to leave and just to come back in the morning. I, however incisted that we stay to find out if I was still neutropenic. I was on neutropenic precautions for close to a week and was determined to spend the day out if I could. I was very happy to hear that my WBCs were at 7.26, smack dab in the middle of normal! :) And I didnt have to wear that goofy blue mask! We spent the day at The Summit mall. We had lunch at Chuy's Mexican Restaurant and then saw the movie "The Help". It was so good! I recommend everyone see it! I still laugh about it. For dinner we had The Cheesecake Factory of course and I did have a piece of my red velvet cheesecake :)
On Tuesday morning we arrived at the BMT unit. The nurse took more labs. I was happy to hear that my labs were good and I was ready to collect! I was connected to the "phresis" machine and the process began! It was very similar to dialysis in that the machine took what it needed and gave me back the rest. In this case it was taking the stem cells from my peripheral blood stream. The process wasn't bad at all. I felt a little light headed but that was from my blood pressure. As silly as it may sound, with each new procedure that I go through as "the patient" I think of the patients that I have taken care of. I think that this whole experience will give me an insight that no other experience could and in turn make me a more compassionate nurse. Isn't it amazing how our God uses us for his purpose.
After about 2 hours the nurse took a sample of the collection to send to the lab. They would determine actually how much of the collection was stem cells. During the process the machine not only collects stem cells but other blood cells and electrolytes. That's why this analysis is important. If the numbers come back showing that the proportion of stem cells is where it should be then the collection process would stop at 4 hours. If not it would continue until it reached 6 hours and for days after until it reached enough collected stem cells. I was very shocked and happy to hear that I would be coming off of the machine at 4 hours. Considering that most people take at least 2 days for collection, I couldn't of been happier. The nurse began calling me "super woman" at this point :)
Thankfully, I didn't need any IV electrolyte or blood product replacements! The nurse couldn't believe that either. She said that most people need at least one electrolyte. I only had to take 1 potassium and 2 Magnesium tablets with dinner. I was so happy to have the process over with! Mark and I celebrated by having dinner at Jim and Nicks BBQ in downtown Birmingham. I usually don't care for BBQ but that was the best BBQ sandwich that I have ever had! I had to stay in Birmingham for the night because they had to do more labs in the morning.
The next morning we packed up and went to the BMT unit for labs. They all came back great!! I didn't need any further oral electrolyte replacement either! We met with our new Nurse Practioner, Melissa. She's a sweetheart! I forgot to mention that we had to fire the old NP Christine. That's another story that I'll have to share later. I feel much more comfortable with Melissa. She seems to be much more compassionate and I'm more confident in her care. After meeting with Melissa we were free to go! We were on the road by 10:00 and home by 1:00! Now I am just waiting to hear from my clinical coordinator for the next steps in the process. For now I'm just enjoying life and praising God for all of his many blessings! :)
*I forgot to take a picture during the process so I found a picture of an aphresis machine to post.
On Tuesday morning we arrived at the BMT unit. The nurse took more labs. I was happy to hear that my labs were good and I was ready to collect! I was connected to the "phresis" machine and the process began! It was very similar to dialysis in that the machine took what it needed and gave me back the rest. In this case it was taking the stem cells from my peripheral blood stream. The process wasn't bad at all. I felt a little light headed but that was from my blood pressure. As silly as it may sound, with each new procedure that I go through as "the patient" I think of the patients that I have taken care of. I think that this whole experience will give me an insight that no other experience could and in turn make me a more compassionate nurse. Isn't it amazing how our God uses us for his purpose.After about 2 hours the nurse took a sample of the collection to send to the lab. They would determine actually how much of the collection was stem cells. During the process the machine not only collects stem cells but other blood cells and electrolytes. That's why this analysis is important. If the numbers come back showing that the proportion of stem cells is where it should be then the collection process would stop at 4 hours. If not it would continue until it reached 6 hours and for days after until it reached enough collected stem cells. I was very shocked and happy to hear that I would be coming off of the machine at 4 hours. Considering that most people take at least 2 days for collection, I couldn't of been happier. The nurse began calling me "super woman" at this point :)
Thankfully, I didn't need any IV electrolyte or blood product replacements! The nurse couldn't believe that either. She said that most people need at least one electrolyte. I only had to take 1 potassium and 2 Magnesium tablets with dinner. I was so happy to have the process over with! Mark and I celebrated by having dinner at Jim and Nicks BBQ in downtown Birmingham. I usually don't care for BBQ but that was the best BBQ sandwich that I have ever had! I had to stay in Birmingham for the night because they had to do more labs in the morning.
The next morning we packed up and went to the BMT unit for labs. They all came back great!! I didn't need any further oral electrolyte replacement either! We met with our new Nurse Practioner, Melissa. She's a sweetheart! I forgot to mention that we had to fire the old NP Christine. That's another story that I'll have to share later. I feel much more comfortable with Melissa. She seems to be much more compassionate and I'm more confident in her care. After meeting with Melissa we were free to go! We were on the road by 10:00 and home by 1:00! Now I am just waiting to hear from my clinical coordinator for the next steps in the process. For now I'm just enjoying life and praising God for all of his many blessings! :)
*I forgot to take a picture during the process so I found a picture of an aphresis machine to post.
Friday, August 12, 2011
Mobilization Chemotherapy
Day 3: We arrived at the BMTU around 0700 where we were greeted and put into a room. The nurse came in and said that they didn't have a bed for me at the moment because of an unexpected admission during the night. She said they would be able to start the chemo in the outpatient room. She then started my IV fluids at 236cc/hr. I guess they really wanted me to be hydrated. I was also started on a Dopamine drip to keep me from going into fluid overload. Mark got us breakfast and we just hung out until they begain "pre-meds" around 1100. I got a dose of Zofran and Solumedrol and at noon the chemo began. The first drug was the VP-16 (Etoposide) and it infused over 2 hours. The worse part of this drug was the metallic taste it left in my mouth. The best way I can explain it is that taste you have in your mouth after leaving the dentist. You know, the taste that comes from the gloves and floss they use.
Around 430pm I got my room. It was nice and spacious. Mark immediately requested a different recliner. The upright flowery pattered chair wasn't going to do it for him. Soon after my nurse David began the second drug, Cytoxan. This drug can cause heart problems so I was connected to telemetry and my vitals were monitored during the 2 hour infusion and for 1 hour after. That damn machine beeped the whole time, I thought it was pretty funny. Later my night nurse Kaci disconnected me and I took a walk and then worked on crocheting Allie's blanket. Later I attempted to sleep. Between vitals being take every 4 hours and having to urinate every 1-2 hours, I got no sleep.
Day 4: After change of shift David came in and did his assessment and let us sleep until like 1130. The day went by pretty fast. I got my second dose of VP-16. It was the last of the chemo but I had to stay until the next day for hydration. I enjoyed the hospital dinner of blackeyed peas, macaroni and cheese, corn, and salad. It was actually pretty good. Kaci stopped the Dopamine drip and instantly the urinating every 1-2 hours stopped. I enjoyed a pretty good night sleep.
Day 5: After seeing Dr. Salzman, David came in and disconnected my fluids. I was free from the IV pole!! lol. About 45 minutes later I got my discharge paperwork and we were on our way home!
Life has been great since we have been home! I haven't really had any fatigue or side effects. This chemo was much better than the last. I began the Neulasta shots and they have went well. I haven't had any flu-like symptoms or bone pain. Today was day 6 of the shots. A friend advised me to take Claritin while on the shots to counteract the flu-symptoms. I don't know if it is the reason for my doing so well but I'll give it some credit! I've been on neutropenic precautions since Thursday but it hasn't been that bad. I just have to be very careful of what I eat and can't really go out in public places.
We have to go back on Monday for labs and to begin the stem cell collection process. I'm hoping it will only take one day. I'm excited to be getting closer and closer to getting all of this done so I can go back to normal life. Thanks for the continued prayers and support!
Around 430pm I got my room. It was nice and spacious. Mark immediately requested a different recliner. The upright flowery pattered chair wasn't going to do it for him. Soon after my nurse David began the second drug, Cytoxan. This drug can cause heart problems so I was connected to telemetry and my vitals were monitored during the 2 hour infusion and for 1 hour after. That damn machine beeped the whole time, I thought it was pretty funny. Later my night nurse Kaci disconnected me and I took a walk and then worked on crocheting Allie's blanket. Later I attempted to sleep. Between vitals being take every 4 hours and having to urinate every 1-2 hours, I got no sleep.
Day 4: After change of shift David came in and did his assessment and let us sleep until like 1130. The day went by pretty fast. I got my second dose of VP-16. It was the last of the chemo but I had to stay until the next day for hydration. I enjoyed the hospital dinner of blackeyed peas, macaroni and cheese, corn, and salad. It was actually pretty good. Kaci stopped the Dopamine drip and instantly the urinating every 1-2 hours stopped. I enjoyed a pretty good night sleep.
Day 5: After seeing Dr. Salzman, David came in and disconnected my fluids. I was free from the IV pole!! lol. About 45 minutes later I got my discharge paperwork and we were on our way home!
Life has been great since we have been home! I haven't really had any fatigue or side effects. This chemo was much better than the last. I began the Neulasta shots and they have went well. I haven't had any flu-like symptoms or bone pain. Today was day 6 of the shots. A friend advised me to take Claritin while on the shots to counteract the flu-symptoms. I don't know if it is the reason for my doing so well but I'll give it some credit! I've been on neutropenic precautions since Thursday but it hasn't been that bad. I just have to be very careful of what I eat and can't really go out in public places.
We have to go back on Monday for labs and to begin the stem cell collection process. I'm hoping it will only take one day. I'm excited to be getting closer and closer to getting all of this done so I can go back to normal life. Thanks for the continued prayers and support!
Tuesday, August 9, 2011
Part 1: Consents and Permcath Placement
Day 1: Last Tuesday we traveled our nice 2 1/2 hour drive to Birmingham for the purposes of having my Permcath placed and having chemotherapy. It always sucks leaving Allie but I knew it would be over in no time. Upon arrival to the Bone Marrow Transplantation Unit (BMTU) I was greeted, had my vital signs and weight taken, and was asked to wait in one of the rooms. Over the past few years, I have learned a lot about myself. One thing is that at times I don't have a lot of patience which leads me to speaking my opinion and not caring who is around. After about an hour of waiting I kindly asked the lady at the desk what were we waiting on. She responded, "The doctor but your appointment isn't until 11:00 and it will be a little while after that. At this point it's like 10:00, meaning we got there when I thought the appt was at 9:00. As mentioned above, I don't have a lot of patience and I let the lady have a piece of my mind. Probably wasn't the right thing to do but she understood when I apologized to her. I think it was because I really didn't want to be there in the first place and I hate waiting hours for a doctor and feeling like just a number. Also, we got up at the crack of dawn to get there on time which added to the time away from home and my Allie. Just frustrating. Mark suggested we go get a Starbucks drink and after enjoying my luscious White Chocolate Mocha we made it back by 11:00.
Later on, around 12:00 or so the Nurse Practioner, Christine walked in and asked a ton of questions. I could probably answer them all in my sleep by now. I met Dr. Salzman, who is lovely. And with the both of them there, I signed a consent for the collection of my stem cells and 2 others for purposes of keeping records and statistical data. That was it. All of that waiting for 30 minutes of signing papers and reviewing my medical history. So, off to the UAB townhouse it was.
First I must say how grateful I am to UAB for the free townhouse to stay at during our many upcoming trips to Birmingham. It makes life easier when you don't have to fork out tons of money each time you come over for a hotel room. Food and parking is expensive enough. However, upon arrival to the UAB "townhouse" i realized right away that it wasn't going to be the Marriott. We walked in and went to our room #606. When we walked into the room there was a table and chairs, a small kitchen, a bed, a desk and bathroom. The motel like comforter, the sideways photo above the bed, and the whop sided recliner were too much for me. And did I mention the roach catchers in every corner. LOL. Mark and I couldn't help but laugh and just take it all in. The best part was looking out of our window and seeing a Marriott and Doubletree across the street. Again, I am very greatful and know that there are many people who would consider this place a palace but it was just different from what we are used to. Later on that night I felt bad for feeling this way at all after seeing the many homeless people around downtown Birmingham. I felt so selfish and stupid. When we arrived back at the townhouse, I realized that it wasn't that bad and I had a bed to sleep in. It made me sad to think of the man that I had just saw on the corner. I just wanted to share the irony of the situation and remind everyone to be thankful for what you have because I promise that there are many who have it way worse and would love to be standing in your shoes.
Day 2: I woke up to the sounds of the city. It was 0630 and we had to be at the hospital by 0700. We arrived on time and went to Interventional Radiology as my paper said. After registering and waiting for 45 minutes, the girl at the desk told me that I would need to go to the BMTU and they would get me set up there. Again, I'm furious but this time I just say a few un nice words to myself and let it go. Mark and I then go to the BMTU. There they take my vitals, stab me in the chest (access my power port), and the transporter took me to IR. The procedure only took about 45 minutes but I was awake the whole time! I swear Versed is not what they make it out to be. I remember everything. From the time I got on the surgery table, the doctor numbing my neck, pushing the catheter in, me asking for more meds, and him sewing me up. The worst part was feeling the catheter (permcath) going into my neck, its an undescrible feeling. This is the catheter that will be used for stem cell collection and then for chemo and whatever else during the BMT. I feel for my patients who have to get a Permcath. It feels like a rod sticking out of your chest. Imagine a tube the size of a pencil tunneled under your skin and then left to hang out. Not a fun image, huh.
I only waited in the recovery room for about 5 minutes before being wheeled back to the BMTU. There I got my paperwork and was ready to leave. Then I felt the nausea. I think having no food and the fact that my neck and chest hurt are what caused the nausea. I popped a Compazine and after a cool washcloth and laying down for a few minutes, Mark and I bounced. LOL. On the way back to our lovely townhouse, my dear husband stopped at Guthries and got me some chicken fingers and fries. He knows me too well. I have been devastated since the Columbus Guthries closed down a couple years ago. Once back to the townhouse, I ate, took a pain pill, and slept for what seemed like forever. I woke up around 7pm.
I was determined to get my booty out of bed and not just sit there all night (plus I had heard about this Vera Bradley store that I was dying to check out). Mark and I went to an outdoor mall that was amazing. I didn't get anything at the Vera Bradley store because it turned out to be not that great. However, I did visit the Brighton store where I bought myself 4 charms for my bracelet. Dinner was at the Cheesecake Factory. It was amazing. We decided to get a piece of the red velvet cheesecake to go. It was the best thing that I think I have ever tasted. Needless to say, we will be going back there on our next trip.
Later on, around 12:00 or so the Nurse Practioner, Christine walked in and asked a ton of questions. I could probably answer them all in my sleep by now. I met Dr. Salzman, who is lovely. And with the both of them there, I signed a consent for the collection of my stem cells and 2 others for purposes of keeping records and statistical data. That was it. All of that waiting for 30 minutes of signing papers and reviewing my medical history. So, off to the UAB townhouse it was.
First I must say how grateful I am to UAB for the free townhouse to stay at during our many upcoming trips to Birmingham. It makes life easier when you don't have to fork out tons of money each time you come over for a hotel room. Food and parking is expensive enough. However, upon arrival to the UAB "townhouse" i realized right away that it wasn't going to be the Marriott. We walked in and went to our room #606. When we walked into the room there was a table and chairs, a small kitchen, a bed, a desk and bathroom. The motel like comforter, the sideways photo above the bed, and the whop sided recliner were too much for me. And did I mention the roach catchers in every corner. LOL. Mark and I couldn't help but laugh and just take it all in. The best part was looking out of our window and seeing a Marriott and Doubletree across the street. Again, I am very greatful and know that there are many people who would consider this place a palace but it was just different from what we are used to. Later on that night I felt bad for feeling this way at all after seeing the many homeless people around downtown Birmingham. I felt so selfish and stupid. When we arrived back at the townhouse, I realized that it wasn't that bad and I had a bed to sleep in. It made me sad to think of the man that I had just saw on the corner. I just wanted to share the irony of the situation and remind everyone to be thankful for what you have because I promise that there are many who have it way worse and would love to be standing in your shoes.
Day 2: I woke up to the sounds of the city. It was 0630 and we had to be at the hospital by 0700. We arrived on time and went to Interventional Radiology as my paper said. After registering and waiting for 45 minutes, the girl at the desk told me that I would need to go to the BMTU and they would get me set up there. Again, I'm furious but this time I just say a few un nice words to myself and let it go. Mark and I then go to the BMTU. There they take my vitals, stab me in the chest (access my power port), and the transporter took me to IR. The procedure only took about 45 minutes but I was awake the whole time! I swear Versed is not what they make it out to be. I remember everything. From the time I got on the surgery table, the doctor numbing my neck, pushing the catheter in, me asking for more meds, and him sewing me up. The worst part was feeling the catheter (permcath) going into my neck, its an undescrible feeling. This is the catheter that will be used for stem cell collection and then for chemo and whatever else during the BMT. I feel for my patients who have to get a Permcath. It feels like a rod sticking out of your chest. Imagine a tube the size of a pencil tunneled under your skin and then left to hang out. Not a fun image, huh.
I only waited in the recovery room for about 5 minutes before being wheeled back to the BMTU. There I got my paperwork and was ready to leave. Then I felt the nausea. I think having no food and the fact that my neck and chest hurt are what caused the nausea. I popped a Compazine and after a cool washcloth and laying down for a few minutes, Mark and I bounced. LOL. On the way back to our lovely townhouse, my dear husband stopped at Guthries and got me some chicken fingers and fries. He knows me too well. I have been devastated since the Columbus Guthries closed down a couple years ago. Once back to the townhouse, I ate, took a pain pill, and slept for what seemed like forever. I woke up around 7pm.
I was determined to get my booty out of bed and not just sit there all night (plus I had heard about this Vera Bradley store that I was dying to check out). Mark and I went to an outdoor mall that was amazing. I didn't get anything at the Vera Bradley store because it turned out to be not that great. However, I did visit the Brighton store where I bought myself 4 charms for my bracelet. Dinner was at the Cheesecake Factory. It was amazing. We decided to get a piece of the red velvet cheesecake to go. It was the best thing that I think I have ever tasted. Needless to say, we will be going back there on our next trip.
Monday, July 25, 2011
GOD IS GOOD
So I have to share my exciting news! Today we went to UAB for pre-transplant tests (EKG, Chest X-ray, Labs, Echocardiogram). Those went great. While waiting in the waiting room for the nurse, Dr. Forero walks by. As always he hugs me and says "Hello Anita" and "How are you, Mr. Kirshkoff". Lol...Love him and his Colombian accent. I asked him if he would have time to show me my PET scan images and he said of course. I proceeded with all of my tests and then went back to his office. He already had the images on the screen and didn't have to say a word. I gasped when I saw them and all I could say was WOW. To compare the two, the image taken in May showed the tumor in my chest the size of a golf ball and now the image taken in July showed it to be about the size of a grape. I politely asked him, "So the radiologist who read the images was a complete idiot, right?" He smiled and said, "We clinicians just see things differently. This is why it is important not only to rely on the report but also see the images for yourself". To clarify, I was just told last week that my tumor didn't reduce at least 50% based on the Report....Now I'm seeing for myself that it indeed has reduced at least 50% or more. This is such great news because it means that the cancer is responding better than we thought. All I can say is that GOD IS GOOD. I couldn't stop smiling and still can't. Crazy the things that make me happy these days :)
Thursday, July 21, 2011
Meeting with the BMT team......
Yesterday we met with the bone marrow transplant team. What a scary day. Me, being the cheerful person that I am and all smiles was in tears by the time we left. Everything seemed so surreal until yesterday. Everything was brought to light. I have done my research and through my nursing experience knew about bone marrow transplantion and the process. However, when a doctor is sitting in front of YOU telling YOU all of the things that YOU will go through and what to expect it's a whole different ballgame.
Dr. Shelton politely came into the room and introduced herself to Mark and I. With her were her assistant and clinical coordinator. She started out by explaining my scans and moved to what her plans were for my care. She said that my PET scan that was taken a week ago was good but not where she wanted it to be for transplant. It needed to show at least a partial remission to proceed with transplant. Unfortunately, I am not there yet. So plans were made for another chemo and hospital stay. I will be admitted to the hospital on August 4th to recieve Cytoxan and VP-16. During this hospital stay I will also have another "line" placed in my chest called a Permcath that will be used for stem cell collection. The type of transplant I will have is called "autologus" because I will be my own donor.
Once home from the chemo treatment I will give myself 9 days worth of Neulasta shots. Remember, it is the white blood cell stimulator but it also pulls the stem cells into the peripheral blood. The dose I will be giving myself is much higher than the normal dose because I need lots of stem cells in the blood stream for collection. I have been told to expect "bone pain" because of the large number of stem cells coming out of the bone marrow in such a short period of time. On the 9th day of shots I have to go back for labs and stay in Birmingham until my bloodwork shows that there are enough circulating stem cells for collection. Hopefully this will only take a day or two. Collection requires being connected to a machine (similar to hemodialysis) and having the stem cells collected and what isn't used going back to the body. This process is call aphresis and can take several hours. Once enough stem cells are collected they will be frozen and stored until transplant. Sounds fun, huh? Not even to the good part!
Sometime around September 4th I will have another PET scan. Hopefully it will show a great response to the chemo. I pray it will amaze me and show remission. That would be wonderful! If not, we will discuss that then. If the scan shows that I am ready for transplant we will proceed, probably mid September.
Once admitted to the hospital, I will recieve approximately 10 days of "high dose" chemotherapy. The drugs Busulfan, Cytoxan, and VP-16 will be used. This chemotherapy will completely deplete my bone marrow of all cells (Red blood cells,White blood cells, and Platelets). In turn, my immune system will be wiped out. This is where the transplant comes to play. I will be given my stem cells back and once transfused they will migrate to the bone marrow and start to produce healthy cells. This process called engraftment, can take 2 weeks or more. During this time I will be very vulnerable to infection and bleeding. When my blood cells show that they are high enough to leave the hospital with no complication, I will be released from the hospital. However, I will not be allowed to go home because we live too far away. I will be released to a townhouse nearby the hospital because I will have to follow up with the doctors daily for a while and in case of fever or infection. Hopefully I will only have to do this for about 2 weeks before I can come home.
That's really all I know for now. I hope it didn't overwhelm or confuse you. You may wonder why I have to do all of this. The reason is I have no other choice. It is a lot to go through but I have to be around for my Allie. The consequence of not having the transplant is near certain death from cancer. Sorry to sound so harsh, but it's the truth. The transplants main purpose is to rid the body of cancer and all of the minute cancer cells that may be undetectable and to prevent another relapse. The high dose chemo can do this for some. The scary part is that there is only a 50% chance that it will cure my cancer. Heads or tails. I'm determined to be a part of the 50% that call themselves survivors. I was once, and I will be again.
Dr. Shelton politely came into the room and introduced herself to Mark and I. With her were her assistant and clinical coordinator. She started out by explaining my scans and moved to what her plans were for my care. She said that my PET scan that was taken a week ago was good but not where she wanted it to be for transplant. It needed to show at least a partial remission to proceed with transplant. Unfortunately, I am not there yet. So plans were made for another chemo and hospital stay. I will be admitted to the hospital on August 4th to recieve Cytoxan and VP-16. During this hospital stay I will also have another "line" placed in my chest called a Permcath that will be used for stem cell collection. The type of transplant I will have is called "autologus" because I will be my own donor.
Once home from the chemo treatment I will give myself 9 days worth of Neulasta shots. Remember, it is the white blood cell stimulator but it also pulls the stem cells into the peripheral blood. The dose I will be giving myself is much higher than the normal dose because I need lots of stem cells in the blood stream for collection. I have been told to expect "bone pain" because of the large number of stem cells coming out of the bone marrow in such a short period of time. On the 9th day of shots I have to go back for labs and stay in Birmingham until my bloodwork shows that there are enough circulating stem cells for collection. Hopefully this will only take a day or two. Collection requires being connected to a machine (similar to hemodialysis) and having the stem cells collected and what isn't used going back to the body. This process is call aphresis and can take several hours. Once enough stem cells are collected they will be frozen and stored until transplant. Sounds fun, huh? Not even to the good part!
Sometime around September 4th I will have another PET scan. Hopefully it will show a great response to the chemo. I pray it will amaze me and show remission. That would be wonderful! If not, we will discuss that then. If the scan shows that I am ready for transplant we will proceed, probably mid September.
Once admitted to the hospital, I will recieve approximately 10 days of "high dose" chemotherapy. The drugs Busulfan, Cytoxan, and VP-16 will be used. This chemotherapy will completely deplete my bone marrow of all cells (Red blood cells,White blood cells, and Platelets). In turn, my immune system will be wiped out. This is where the transplant comes to play. I will be given my stem cells back and once transfused they will migrate to the bone marrow and start to produce healthy cells. This process called engraftment, can take 2 weeks or more. During this time I will be very vulnerable to infection and bleeding. When my blood cells show that they are high enough to leave the hospital with no complication, I will be released from the hospital. However, I will not be allowed to go home because we live too far away. I will be released to a townhouse nearby the hospital because I will have to follow up with the doctors daily for a while and in case of fever or infection. Hopefully I will only have to do this for about 2 weeks before I can come home.
That's really all I know for now. I hope it didn't overwhelm or confuse you. You may wonder why I have to do all of this. The reason is I have no other choice. It is a lot to go through but I have to be around for my Allie. The consequence of not having the transplant is near certain death from cancer. Sorry to sound so harsh, but it's the truth. The transplants main purpose is to rid the body of cancer and all of the minute cancer cells that may be undetectable and to prevent another relapse. The high dose chemo can do this for some. The scary part is that there is only a 50% chance that it will cure my cancer. Heads or tails. I'm determined to be a part of the 50% that call themselves survivors. I was once, and I will be again.
On another note, I am thankful to be given to opportunity to fight. Some people aren't so lucky. I'm thankful for everything I have been blessed with and I'll do my part to beat this horrible disease. I have faith in the Lord and pray that he will use me for his purpose. All I ask for is prayers from everyone. Thank you in advance.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". --Jeremiah 29:11
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