It's hard to believe surgery was almost a month ago! 9 days in Barnes, 11 days at my moms, and we have been home almost a week! Wow! Time flies! My mom and Michael were wonderful and let me sleep in their bed since there was a bathroom in their room...they slept downstairs on the extra bed. I'm sure Michael just enjoyed me cooking a few meals! Haha!
As most of you saw on Facebook, Dr K has decided bc there was tumor coming through a lymph node we were unaware of, another 2 months of chemo are necessary. I can't say I'm happy but I also want to be completely DONE with this crap!
I'm am tired tired tired of not being able to eat what I crave. I have advanced myself to softs so that I have a little more to choose from. Eggs, pasta, etc...but what I really what is a freaking cheeseburger or steak. Mmmmmm....I'm such a red meat fan. Can you tell? Ha!
My incisions are all healing really well! The only problem is this stupid feeding tube. It's kind of coming out on its own so I'm excited to have it removed Wednesday at my follow up with Dr Patterson. My mom and Dr K are interested in keeping it since I won't feel much like eating with chemo but I'm over it. I'll figure it out. I'm already down a little over 20 lbs but they said to except this. Give me red meat!😆
I'm so glad the kids are almost out of school. Let's see how long that lasts;) shelby and Jackson are going to be in summer school for a month so it's not completely out of school but at least Audrey will be home! They all have VBS, church trips, a new studio, band camp, it's going to be an awesome summer! I hope I have energy for all of it!
I love you all! The benefit was amazing! Jamie, mom, and Michelle did an awesome job putting it together and are so glad it's over! Haha! It was fun and definitely helpful to my little family over the next few months. Thanks for all the donations as well! AWESOME friends and family. Period.
Love you all! On to the next round!
Reva
Saturday, May 14, 2016
Saturday, April 23, 2016
Hello out there!
So Tuesday was the big day! We got to Barnes about 845 bc I had to give Dr. Patterson a copy and of the PET scan from Friday. They took me later than 11 I think, but I don't remember exactly what time it was. I did sign up for a clinical trial where they took blood and path of their own tone tested. Anything to try and help figure this mess it out!
I don't remember much of rolling in to the OR but I hear it really didn't take long. 4hrs?? I remember being in the ICU and them tying to extubate me but I kept biting on the tubes and would desat. I was also gagging on the tubes so I'm not sure what I wanted to keep them for! I had to stay one night in the ICU because of the difficult time the had, but am not there now!
That brings me to Wednesday. I was moved to the step down unit. It was more like an old ICU in that there were not doors, just curtains. The ICU was much nicer! I stayed there for a day and then was moved to the floor. Thank goodness we had already put in for a private room! So here it is Saturday already! I have had my art line removed and my peripheral hand line removed so I only have the central and my power port (which has not been accessed). I still have a primrose? Drain by the midline chest incision, a chest tube on my right side which is not putting out more than 50/hr if 8 heard correctly, and my g and j tubes. Tube feeding started in the step down unit and are fine so far. It's going I pretty slow. I have a thoracic epidural, and it is wonderful! I don't hit my button very often and my pain is usually 0-4! Catheter was removed in step down too so I'm walking to the bathroom and doing daily PT. I was on O2 until yesterday morning. Just couldn't keep my sats in the 90s.
As far as I know I will be in this room until discharge. Not sure of a date yet. I have my swallow study on Monday and will HOPEFULLY GET TO DRINK SOMETHING! Not at all the least bit hungry but I would kill someone for water or ice! ;) hahaha! The nurses have all been very nice.
Thank you for all the prayers, calls, messages, and visits! Prayers are being answered! I will let you all know the pathology as soon as I do and whether I will go another round of chemo or not.
Love you all!
I don't remember much of rolling in to the OR but I hear it really didn't take long. 4hrs?? I remember being in the ICU and them tying to extubate me but I kept biting on the tubes and would desat. I was also gagging on the tubes so I'm not sure what I wanted to keep them for! I had to stay one night in the ICU because of the difficult time the had, but am not there now!
That brings me to Wednesday. I was moved to the step down unit. It was more like an old ICU in that there were not doors, just curtains. The ICU was much nicer! I stayed there for a day and then was moved to the floor. Thank goodness we had already put in for a private room! So here it is Saturday already! I have had my art line removed and my peripheral hand line removed so I only have the central and my power port (which has not been accessed). I still have a primrose? Drain by the midline chest incision, a chest tube on my right side which is not putting out more than 50/hr if 8 heard correctly, and my g and j tubes. Tube feeding started in the step down unit and are fine so far. It's going I pretty slow. I have a thoracic epidural, and it is wonderful! I don't hit my button very often and my pain is usually 0-4! Catheter was removed in step down too so I'm walking to the bathroom and doing daily PT. I was on O2 until yesterday morning. Just couldn't keep my sats in the 90s.
As far as I know I will be in this room until discharge. Not sure of a date yet. I have my swallow study on Monday and will HOPEFULLY GET TO DRINK SOMETHING! Not at all the least bit hungry but I would kill someone for water or ice! ;) hahaha! The nurses have all been very nice.
Thank you for all the prayers, calls, messages, and visits! Prayers are being answered! I will let you all know the pathology as soon as I do and whether I will go another round of chemo or not.
Love you all!
Thursday, April 14, 2016
Not what I expected...
I met with Dr. Patterson yesterday...things didn't go quite as planned. First I actually met with anesthesia. The nurse informed me that they would not use my port for surgery because it wasn't good for "resuscitative measures". Who are they going to be resuscitating?? Let's just say that this wasn't the only surprise! The resident said I would have an IV to go to sleep but I would probably wake up with an Arterial line and maybe another line. I will have a thoracic epidural for pain control. I will most likely spend the first night in the ICU or the step down unit. They drew my blood work and sent me to the doctor.
Dr. Patterson came in, sat down, and asked how I was doing. I said the nausea was better but I was still tired. That's when he told me he thought we should wait a week. WHAT?!? He said I have to be at the top of my game going in to this surgery. I should have explained that I had worked 3 out of four days in a row and was just wore out. We decided that I would see how the PET scan went and talk with Dr. kosuri Friday. I will get back with him then as to whether or not we proceed or push it off a week. Now my allergies are hitting and it might not be such a bad idea. 😩
As for the surgery itself, we discussed the abdominal mesh and the Peg tube. He said he didn't think the mesh would be a problem for the upper abdominal incision but that he couldn't put a tube or button through the mesh. 😳 Ok, then what?! He never said. Um...
Needless to say I left with more questions than answers. I fully trust Dr. Patterson and have heard wonderful things about him but people have rearranged their lives for next week and I don't know that I could emotionally wait another week. I think I would just sit and obsess for the next week and a half! I want to be able to get this done! Today I got the kids off to school and didn't take a single nap! Let's pray everything goes as planned, if it's meant to.
And I'm going to kick the next person that tells me how BIG this surgery is. I'm aware.
Dr. Patterson came in, sat down, and asked how I was doing. I said the nausea was better but I was still tired. That's when he told me he thought we should wait a week. WHAT?!? He said I have to be at the top of my game going in to this surgery. I should have explained that I had worked 3 out of four days in a row and was just wore out. We decided that I would see how the PET scan went and talk with Dr. kosuri Friday. I will get back with him then as to whether or not we proceed or push it off a week. Now my allergies are hitting and it might not be such a bad idea. 😩
As for the surgery itself, we discussed the abdominal mesh and the Peg tube. He said he didn't think the mesh would be a problem for the upper abdominal incision but that he couldn't put a tube or button through the mesh. 😳 Ok, then what?! He never said. Um...
Needless to say I left with more questions than answers. I fully trust Dr. Patterson and have heard wonderful things about him but people have rearranged their lives for next week and I don't know that I could emotionally wait another week. I think I would just sit and obsess for the next week and a half! I want to be able to get this done! Today I got the kids off to school and didn't take a single nap! Let's pray everything goes as planned, if it's meant to.
And I'm going to kick the next person that tells me how BIG this surgery is. I'm aware.
Monday, March 21, 2016
Woo hoo!
Today was my last day of chemo...for this round at least. I'll explain more in a bit!
Labs were fine, only 3 radiation after today! The next three radiation are what they call boost radiation. For the first 25 I have had the area with lymph nodes and mass treated. Now they will focus more on just the mass. I will have about 3 weeks off and then a PET scan to see the progress. They have to wait that long because the treatments will make the whole area "hot" and will light up. After a few weeks the area will have "cooled off" and only the cancer cells will light up. That test will be on 4/15. I will then meet with Dr Kosuri that day as well for a follow up. She will give me the results and let me know if the plan changes at all.
Jamie P took me to chemo today. Thanks girl! It was short (I slept) and sweet (I'm done!). While we waited an hour for a chair though! They were busy today. It's really eye opening to see how many others are going through this is some way or another. During my treatment I called the surgeon. We put a date down for the 19th of April! That's A month away! Ahh! Crazy! So far the plan is still 7-10 days in the hospital and 2 months off. I'm so nervous already. That's a whole month almost of unpaid time. Yikes.
Please say a quick prayer for my BFF Jamie today too. Though they say the results are fine, the final pathology hasn't come back from a test last week. I know she is nervous and is telling everyone "Reva and I have done a lot together! I do NOT want to do cancer together too!" Haha! Me either sister, me either! ❤️
Today was my last day of chemo...for this round at least. I'll explain more in a bit!
Labs were fine, only 3 radiation after today! The next three radiation are what they call boost radiation. For the first 25 I have had the area with lymph nodes and mass treated. Now they will focus more on just the mass. I will have about 3 weeks off and then a PET scan to see the progress. They have to wait that long because the treatments will make the whole area "hot" and will light up. After a few weeks the area will have "cooled off" and only the cancer cells will light up. That test will be on 4/15. I will then meet with Dr Kosuri that day as well for a follow up. She will give me the results and let me know if the plan changes at all.
Jamie P took me to chemo today. Thanks girl! It was short (I slept) and sweet (I'm done!). While we waited an hour for a chair though! They were busy today. It's really eye opening to see how many others are going through this is some way or another. During my treatment I called the surgeon. We put a date down for the 19th of April! That's A month away! Ahh! Crazy! So far the plan is still 7-10 days in the hospital and 2 months off. I'm so nervous already. That's a whole month almost of unpaid time. Yikes.
Please say a quick prayer for my BFF Jamie today too. Though they say the results are fine, the final pathology hasn't come back from a test last week. I know she is nervous and is telling everyone "Reva and I have done a lot together! I do NOT want to do cancer together too!" Haha! Me either sister, me either! ❤️
Tuesday, March 15, 2016
Nothing exciting this week to report...my labs are down but not crazy. I did have a hard time eating this weekend at work and am having to be more careful about what I choose. I have told a few people already...take food away from a big girl and there will be a mourning. I'm sure I will get over it...but it's a definite relationship change with food. Ok, pity party over.
My high school chum Sarah came with me this week. I was able to fight off the Benadryl and we chatted and caught up. Thanks for coming!!
I still have not heard from the surgeon so no scheduled date yet. I'm hoping they will call soon!
Only one more chemo and 8 more radiation! Everyone enjoy this beautiful weather today!
My high school chum Sarah came with me this week. I was able to fight off the Benadryl and we chatted and caught up. Thanks for coming!!
I still have not heard from the surgeon so no scheduled date yet. I'm hoping they will call soon!
Only one more chemo and 8 more radiation! Everyone enjoy this beautiful weather today!
Friday, March 11, 2016
Dr. Patterson
Mom and I met with the surgeon today. He's a pretty no fuss kind of guy. That's ok...I need you to do one thing sir. He drew a diagram of where my proposed incisions would be, one below my left clavicle and one in the middle of my upper abdomen. Then mom, thank goodness, reminded him of my mesh from the hernia repair a few years ago. He asked what type of mesh it is. 😳 Uh...there are different kinds?!? That may change his approach, he has some research to do. They will place my PEG tube then as well. I won't eat for 6-7 days after and then they will perform a dye test to make sure there are no leaks in the reattachment. I will be at Barnes for 7-8 days if everything goes well.
So...finish treatment in the next two weeks.
PET scan 3-4 weeks after last treatment.
Surgery, no date set yet.
I am so happy to be moving through this all without a problem so far! Let's hope it continues that way!💜
Mom and I met with the surgeon today. He's a pretty no fuss kind of guy. That's ok...I need you to do one thing sir. He drew a diagram of where my proposed incisions would be, one below my left clavicle and one in the middle of my upper abdomen. Then mom, thank goodness, reminded him of my mesh from the hernia repair a few years ago. He asked what type of mesh it is. 😳 Uh...there are different kinds?!? That may change his approach, he has some research to do. They will place my PEG tube then as well. I won't eat for 6-7 days after and then they will perform a dye test to make sure there are no leaks in the reattachment. I will be at Barnes for 7-8 days if everything goes well.
So...finish treatment in the next two weeks.
PET scan 3-4 weeks after last treatment.
Surgery, no date set yet.
I am so happy to be moving through this all without a problem so far! Let's hope it continues that way!💜
Wednesday, March 9, 2016
Sorry for the late posting! Monday was busy and I didn't feel the best yesterday.
Chemo #4
Radiation #15
More than half way done...with this round at least!
Ok, so first of all I have to say thank you to everyone that has brought food, given gift cards, send cards, messages, etc...I am so grateful! You sometimes forget, as a mom and nurse, what it feels like to be taken care of by others because you're always so busy taking care of other people. My mom has been amazing as well and I don't tell her enough how much I appreciate her. Love you all!!
Alright on to business. Labs. Radiation. Meeting with Dr. Craft...I had to tell him that now I know what it felt like for food to get stuck. At work Sunday I was eating a sandwich and definitely could tell a bite did NOT want to go down. He says, again, just to expect more of the same and the pain I had before was probably just esophageal spasms. I do not have any red markings yet from the radiation so he was pleased. Keep on keeping on.
My labs were all fine again this week so Dr. Kosuri said no meeting next week, we can meet the day of my last treatment! Seems crazy that my last chemo is only 2 weeks away! I thought this 6 weeks would drag on forever but it hasn't so for that I am pleased. She said she was surprised I was even able to EAT a sandwich still when I told her about the food sticking! I must be a rare case! I am still not losing any hair, not puking, just some nausea...I do not have the stamina I used to. I get tired easily but ok...if that and nausea is all I can complain about right now I'll be quiet!
We did discuss surgery though!! Big Step! She says I will have surgery 4-5 weeks after my last treatment. This is a little sooner than I was expecting but I'm all for just getting it over with! She said I could meet with the Mercy guys but she also suggested trying to meet with the WashU guys. It makes sense and mom and I had already discussed it actually. They have volume and more experience there. They have practiced, if you will, on more patients than the guys at Mercy. Just like how women come to Mercy to have a baby because we are the baby factory, I want to go to the cancer factory. I had already started researching the WashU docs and found one that specializes in esophageal cancer. That happened to be one of the 2 names she gave me. She suggested I try and get in to see him before my last treatment so I called yesterday. They wouldn't even make an appointment until they received my records, so I hope to hear from them today. Kosuri thinks the hospital stay won't be too lengthy, but my home recovery will be about 2 months and difficult. She estimates I will have the PEG (feeding tube) for a month and then learning to eat differently will take a while as well.
I guess that's about it! Mike got to go watch me sleep this week during treatment and Sarah will be watching me next week! Mom and I have started shopping for the Horse race awards and such...it sounds like it's going to be so much fun! I am amazed by all the basket ideas and donations! I have a pretty awesome group of family and friends!
Chemo #4
Radiation #15
More than half way done...with this round at least!
Ok, so first of all I have to say thank you to everyone that has brought food, given gift cards, send cards, messages, etc...I am so grateful! You sometimes forget, as a mom and nurse, what it feels like to be taken care of by others because you're always so busy taking care of other people. My mom has been amazing as well and I don't tell her enough how much I appreciate her. Love you all!!
Alright on to business. Labs. Radiation. Meeting with Dr. Craft...I had to tell him that now I know what it felt like for food to get stuck. At work Sunday I was eating a sandwich and definitely could tell a bite did NOT want to go down. He says, again, just to expect more of the same and the pain I had before was probably just esophageal spasms. I do not have any red markings yet from the radiation so he was pleased. Keep on keeping on.
My labs were all fine again this week so Dr. Kosuri said no meeting next week, we can meet the day of my last treatment! Seems crazy that my last chemo is only 2 weeks away! I thought this 6 weeks would drag on forever but it hasn't so for that I am pleased. She said she was surprised I was even able to EAT a sandwich still when I told her about the food sticking! I must be a rare case! I am still not losing any hair, not puking, just some nausea...I do not have the stamina I used to. I get tired easily but ok...if that and nausea is all I can complain about right now I'll be quiet!
We did discuss surgery though!! Big Step! She says I will have surgery 4-5 weeks after my last treatment. This is a little sooner than I was expecting but I'm all for just getting it over with! She said I could meet with the Mercy guys but she also suggested trying to meet with the WashU guys. It makes sense and mom and I had already discussed it actually. They have volume and more experience there. They have practiced, if you will, on more patients than the guys at Mercy. Just like how women come to Mercy to have a baby because we are the baby factory, I want to go to the cancer factory. I had already started researching the WashU docs and found one that specializes in esophageal cancer. That happened to be one of the 2 names she gave me. She suggested I try and get in to see him before my last treatment so I called yesterday. They wouldn't even make an appointment until they received my records, so I hope to hear from them today. Kosuri thinks the hospital stay won't be too lengthy, but my home recovery will be about 2 months and difficult. She estimates I will have the PEG (feeding tube) for a month and then learning to eat differently will take a while as well.
I guess that's about it! Mike got to go watch me sleep this week during treatment and Sarah will be watching me next week! Mom and I have started shopping for the Horse race awards and such...it sounds like it's going to be so much fun! I am amazed by all the basket ideas and donations! I have a pretty awesome group of family and friends!
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