I just uploaded a few pics to my facebook account. It's uploader is WAY quicker than doing it on here, that's why. And, right now, time is very valuable to me!! :)
Pretty much everyone knows by now, but Maggie Gail Elizabeth Rose was born on Tues, Dec. 8 at 11:20 a.m. She was 8 lbs 3 oz and 20.5 inches long. She is a doll! She has a head full of strawberry blond hair. She's a touch jaundiced but not so much that she had to stay longer. We will be going back to the doc on Monday to have them check her out.
The whole experience was different. All 3 of my boys were a ten hour labor and pretty much the same. She was SO easy!!!! The hospital was SO nice and our care was excellent!! My doctor was awesome and it just couldn't have gone any better.
I was admitted Monday night for a dose of cervidil, which was to hopefully soften me up for the labor in the morning. Doc didn't want me to actually deliver in the night, just get ready for it. He wanted me to get some "rest" which was slightly impossible as the cervidil was causing some pretty powerful contractions. By four a.m. they stopped the cervidil cause I was already at a 3. The contractions I'd been having monday afternoon had helped a little too.
I got some decent sleep between 4 and 6 and then they started the pitocin at 6:30. He broke my water at 7:30-8. I got the epidural at 9:30 and was at an 8 before we knew it! My (awesome) nurse called teh doctor and told him to come right away (this was at 11) and then checked me and started freaking out! Baby was coming right away! Doc ran in, I pushed, she came out in a hurry!! :) I didn't even tear and my pain has been really quite low. I was so focused on my pushing that I wasn't even thinking about baby gender till I opened my eyes and he was checking her. He announced it was a girl and I just BURST into tears!!! They were all like, "Open your eyes, look at her!" But I was crying so hard!!
They did all of her weighing, cleaning, etc in the delivery room which I loved. In the past, they'd always taken the kiddos away to the nursery for that. They even did the hearing tests and ped visits in our room. She rarely left my side! It was so nice!
I am lucky to have some really amazing friends here who came to visit, watched my kids, have brought food, etc etc etc.
She is doing really well. We are getting the hang of each other and she eats (and poops) like a champ! Sleep is still evading us, but that's not all her fault. The boys love her to death, but have been a little stressed out about the change. Sammy woke up in the middle of the night last night and Hercules kept me up for like an hour before I shoved him in the toy room. Didn't help that she was awake from 10pm to 1 am having a fit. So, sleep is the only thing we are suffering from right now... or lack of it, but everything else is fine. I am trying to take it easy. My brain says that while she's sleeping I need to clean, or do dishes, or something, but I really need to ignore it and get some rest. It's hard with S though. He just gets into everything and I don't feel like I can just leave him be to go take a nap. We will get the hang of it. It just takes time.
Only a few minor hormonal/stress breakdowns so far.
And D came home early today vomiting. N was gone and luckily my friend, Val, was able to go get him for me. He's doing ok now, just a few more vomits. Oi.
I will share a dream I had. The whole pregnancy, I've been pretty sure it was a boy. A few dreams it was a boy, that sort of thing. I don't think I wanted to get my hopes up, and I think the idea of a girl was a little scary!
About a month ago I had a dream that I went to see my mom. I was doing all the things I'd do when I was home with her, cleaning, taking out trash, etc, the day to day stuff and she was standing there watching me holding a baby girl. She was watching the baby girl for me while I was busy, then she gave her to me.
This is part of why I bawled so hard in the delivery room.
I know she was with us.
Friday, December 11, 2009
Wednesday, December 2, 2009
Yesterday. Part Two.
I'll start with the basics first. Went to the doctor. They made me feel better instantly by finally acknowledging that I am further along than they were acknowledging. It's good to be validated, I guess. Then the doctor checked and told me I hadn't progressed at all, which was incredibly frustrating. Then we did the ultrasound which was, he said, just for fun, but actually that they (doctors) would like to do one every month if the insurance companies would let them have their way. He checked for little details, defects, and things and was kind enough, or fortuitous enough to stay clear of baby hands, feet, and face. Can you imagine? See how cute your baby is!?! Sorry, but yo can't have them yet!! So, I was grateful for that. He was very business about it. Which I needed. We then discussed inducing me this week. After talking, we decided to compromise and induce on Monday. He really did not want to induce me this week, and even though I'm anxious to get this over with, I decided it would be better to wait. SO... that's the long and short of it. Oh, he did "measure" baby and told me it looked like it was about 7lbs 10 oz already. I laughed out loud and said, "Yeah, I don't believe that." He replied with, "Yeah, I don't believe it either." :D He said he believes the munchkin's already well over 8 lbs. So, we're on our way to another big, healthy baby. I am grateful.
In other news, My Grandfather passed away last night. My mom's dad. I am really saddened by this. He's been very sick for the last year and has been in a nursing home. There's so much more to the story, but I just don't know if I have it in me to write about it right now. He was cool. He had some amazing life experiences. I am glad he doesn't have to go through some things anymore, and I wish I could have been with him one last time. That most of all.
:(
In other news, My Grandfather passed away last night. My mom's dad. I am really saddened by this. He's been very sick for the last year and has been in a nursing home. There's so much more to the story, but I just don't know if I have it in me to write about it right now. He was cool. He had some amazing life experiences. I am glad he doesn't have to go through some things anymore, and I wish I could have been with him one last time. That most of all.
:(
Tuesday, November 24, 2009
Yesterday.
Here are a few pics form the cemetery. Her stone is nice. Simple. The lettering is smaller than I would have liked, but it's fine. Natural. She would like it.
Grr.
So I went to the doctor today. I didn't really expect him to say, "Well, let's schedule your induction now!" since it's a holiday week and I'm (according to THEM) still in my 37th week. My last ultrasound put my due date at the 5th, which would mean I'm almost 39 weeks. Whatever...
What is driving me batty is that he said they want to do an ultrasound next week. FOR WHY!?!?!?!? I'll be 2 days shy of 39 weeks (according to THEM). Who does an u/s at 39 weeks?!?!?!? I'm not gonna have a c-section based on some guestimate that an ultrasound came up with!!! I've birthed a 10 pound baby before I can do it again. I just really, really, don't want to. So why can't I just schedule an induction next week?!?!? Not like it's my first baby. I could understand that. But I've had ALL THREE babies via induction, my body is okay with it. Sammy was a full 2 weeks early, via induction. And he was still a little 8 pounder and neither of us was worse for wear. So what now? We have an u/s that says I'm, oooh, about to have a freaking 13 pound baby and then we get to have a c-section cause he thinks it'd be better, or the u/s says that it's only a little 7 pounder right now so we WAIT and then I do have a-freaking-nother 10 pounder and I have to push for two hours!?!?!
Here's an idea. Let's plan an induction. Induce me. THEN measure the baby. After it comes OUT. And see if that's accurate. *eye roll*
So dumb. It's my fourth child for crying out loud.
Each of my births have been inductions. Each of them have taken EXACTLY ten hours. My body is used to that. I am used to that.
Dr. Hulme, where are you when I need you?
What is driving me batty is that he said they want to do an ultrasound next week. FOR WHY!?!?!?!? I'll be 2 days shy of 39 weeks (according to THEM). Who does an u/s at 39 weeks?!?!?!? I'm not gonna have a c-section based on some guestimate that an ultrasound came up with!!! I've birthed a 10 pound baby before I can do it again. I just really, really, don't want to. So why can't I just schedule an induction next week?!?!? Not like it's my first baby. I could understand that. But I've had ALL THREE babies via induction, my body is okay with it. Sammy was a full 2 weeks early, via induction. And he was still a little 8 pounder and neither of us was worse for wear. So what now? We have an u/s that says I'm, oooh, about to have a freaking 13 pound baby and then we get to have a c-section cause he thinks it'd be better, or the u/s says that it's only a little 7 pounder right now so we WAIT and then I do have a-freaking-nother 10 pounder and I have to push for two hours!?!?!
Here's an idea. Let's plan an induction. Induce me. THEN measure the baby. After it comes OUT. And see if that's accurate. *eye roll*
So dumb. It's my fourth child for crying out loud.
Each of my births have been inductions. Each of them have taken EXACTLY ten hours. My body is used to that. I am used to that.
Dr. Hulme, where are you when I need you?
Sunday, November 22, 2009
Just a few pics.
Matthew's Wedding August 2008
Destin, FL October 2008
My Brothers (The only picture I have from that week) November 2008
Today.
Well. Here we are. It's been a year, tomorrow. What a year. So many thoughts, I can't seem to keep them straight.
I really want to blog about the experience with my mom. I already have it typed up in Word. Yet, it seems insufficient. It's 9 pages long and could be so much longer. I don't wanna condense, but I do want to share. So I am going to. I am posting the whole thing. (I only haven't written about the funeral yet. I may do that tomorrow. Maybe not.) Feel free to read if you want to, but please understand that writing this is cathartic for me. That's why I am doing it.
Tomorrow I am taking the boys and going to Houston. We will get to see the marker, finally just placed this last week, and we'll place some flowers. I am anxious.
I really want to blog about the experience with my mom. I already have it typed up in Word. Yet, it seems insufficient. It's 9 pages long and could be so much longer. I don't wanna condense, but I do want to share. So I am going to. I am posting the whole thing. (I only haven't written about the funeral yet. I may do that tomorrow. Maybe not.) Feel free to read if you want to, but please understand that writing this is cathartic for me. That's why I am doing it.
Tomorrow I am taking the boys and going to Houston. We will get to see the marker, finally just placed this last week, and we'll place some flowers. I am anxious.
2003
In June 2003, we took my younger brother out to school in Idaho. David was just a baby, and we had just bought our first minivan, so we drove from Houston to St. Louis to pick up my mom and my brother and head west. We stayed for a wonderful week in a fantastic resort in Driggs, ID. We spent the week driving around Yellowstone and over to Rexburg to get Matthew set up for school. We visited the Tetons and saw geysers and moose and buffalo and even a few bear. Mom was pretty stressed about leaving Matthew as a new freshman, and I know it was hard for her to leave him. On the way home, she started getting sick. Somewhere in Iowa, I think, or Nebraska, she started throwing up and having really bad pain in her kidneys. She was sure it was a kidney stone. We stopped several times for her to use the bathroom and she was in such pain. Nathan pulled over at one point and gave her a priesthood blessing. He started to say that everything would be ok… and then said, “or not”. She always laughed about that later. I knew at that point that something was wrong and nothing was ever going to be the same. Nathan drove like crazy to try to get us home, so she could see a doctor, but her pain was too intense. So about 50 miles from her house in Missouri, we stopped and took her to an emergency room. I hadn’t seen her in that kind of pain before. They immediately said they were going to admit her and do an MRI and CAT scan. We took the kids to her house and I went back to the hospital to be with her and see if she was getting checked out the next day. The doctor came in and told her that she had a “large mass” on her kidney. It was over 10cm. She had just cancelled her health insurance a few months before. We knew this was going to be a problem. Thankfully, she knew an urologist from church and we called him up right away. He referred her to a colleague of his and he immediately scheduled a nephrectomy. She was on pain meds until they could do the surgery a few weeks later.
I came home to TX with Nathan and then went back with David when it was time for her surgery. The days before the surgery were full of us driving to have scans taken of the area to be removed. Her anesthesiologist was a big white haired man in a Harley Davidson bandana. She expressed her nervousness about the surgery and he told her not to worry, that he was gonna put her out good. I remember being with her in the waiting room and the intern came in … Dr Zhu… and looked at her scans then said, “Oh no, this gonna be too hard.” Mom just smiled! It was to be a hand assisted laparoscopic nephrectomy. Which means that it was big enough that they had to open her up a little more and bring the thing out manually. They did this and were confident that they were able to remove it all.
I came home to TX with Nathan and then went back with David when it was time for her surgery. The days before the surgery were full of us driving to have scans taken of the area to be removed. Her anesthesiologist was a big white haired man in a Harley Davidson bandana. She expressed her nervousness about the surgery and he told her not to worry, that he was gonna put her out good. I remember being with her in the waiting room and the intern came in … Dr Zhu… and looked at her scans then said, “Oh no, this gonna be too hard.” Mom just smiled! It was to be a hand assisted laparoscopic nephrectomy. Which means that it was big enough that they had to open her up a little more and bring the thing out manually. They did this and were confident that they were able to remove it all.
2004
She recovered pretty quickly and the tests proved that it was malignant. She went back to work full time so as to get health insurance coverage through the hospital where she was a nurse. They gave her a bit of a hard time about having a pre-existing condition, but we were able to fight that, with the help of several other nurses. She worked, and felt fine, for the next 6 months. She wasn’t worried about it at all. She went in for new scans, with her new oncologist and was unconcerned. The night after her scans, she called up one of her nurse friends who was working at the hospital. She hacked into the system to read mom’s results to her over the phone, only stopping midway and bursting in to tears when she realized what she was reading. I still have a hard copy of this report. Basically, five tumors on her liver. She didn’t call any of us until she had been to the doctor and he told her himself what was happening. She didn’t want to say anything to me. I practically had to force it out of her. I think it was at this point that she realized her life was in jeopardy. Her oncologist told her she had less than a year, unless she pursued this hard core. He did the happy dance in his office when he realized she had a daughter living in Houston, relatively close to MD Anderson. He told her that the best course of action for her was a drug called Interleukin and that they only offered it in St. Louis at low dosage. She needed what was called High Dose IL-2. She could have taken another drug, called interferon but it did not have the success rate that she needed. He insisted High Dose IL-2 was necessary. They offered it at MD Anderson. The next few weeks were spent fighting the insurance company to cover her treatments at MDA. They did NOT want to. The nurses arranged to have their time off donated to her account so she could keep her house in St. Louis, while she came down to live with us for a few months and went through her treatments. She had a liver biopsy during this time as well. She was so nervous about this because you have to be awake for it while they stick a giant needle in your stomach, so that you can take breaths to move your lungs out of the way. She prayed and prayed for peace and when she went in to have it done, she said she felt totally calm and once it was all over, she climbed off the table and exclaimed, “That was great!!!” The staff was all totally shocked by her response and her attitude! No one ever says that after a liver biopsy!! She knew her prayer had been answered.
The biopsy showed that the tumors were all malignant and that they were in fact renal cells. Meaning, her cancer was officially stage four.
Within weeks, she was packing and moving down to Houston to live with us. We got her in to see the doctors and they wanted to put her on a clinical trial to begin with. She agreed and for the next 6 weeks, she and I each gave her injections of this drug twice a day. That was not fun. I practiced on oranges.
We went back in when her time was done and she was rescanned. It had grown, if such a thing was possible. One of the tumors had almost doubled in size. Her largest was over 5cm. Her doctor told her her “Life was in jeopardy” and she had to act swiftly. It was September now, and she had some hard decisions to make. We drove up to St. Louis, spent a few days cleaning her house, and got a realtor. Her house sold in one day, for much more than she expected to make on it. But it broke her heart to have to sell it. I wanted to stay and pack up the house, knowing all of her things would have to go into storage, but she was determined that her treatments couldn’t wait. We left and her home ward took care of packing and cleaning the house for her and putting it all into storage for her. It was a true service project, and she was so very grateful.
The GU clinic at MDA sent her over to the Melanoma Clinic for her High Dose IL-2 care, as they are the ones who administered the drug, which had to be given in the ICU. Some patients had died just from taking this drug, hence the need for it to be given in ICU. I remember there was a man who was, months before, coming to MDA and they had asked mom if he could take her place in line for the drug, (this was before she even started the clinical trial), and she said absolutely. We found out at this point, that this man had died in the ICU taking the IL-2. She was very saddened by this, but not discouraged. She never got discouraged.
We met Dr. Patrick Hwu and his amazing team in October and they set up for her to begin High Dose IL-2 the week before Halloween. I don’t remember the specifics of the IL-2 dosing, but it was something like… with High Dose IL-2, you get over 600,000 mg(?) kg(?) every 8 hours for as many doses as you can take, while regular interleukin is significantly lower. It can kill your heart. It is highly toxic. She went into the ICU and received her first dosage with no problems, then her second. I came back to the ICU the next day and she was a different person. She looked as though she had aged years. She was puffy and swollen and was hallucinating. And yet, her heart was strong. It was always strong. She took the High Dose Il-2 for 4 days, I don’t remember how many doses she got in that time, and at the end, she was not herself. They put her on lasix to remove the over 40 pounds of water weight she had gained, and moved her out of the ICU to recover for 3 days. She came home after that to recover for 3 weeks before going back to do it again. Most patients, at that time, made it through about 3 of these weeklong cycles, before quitting, or before their body just can’t take it anymore. Mom took 8 of these week long ICU cycles, each time her body getting more and more weak, more and more hallucinations, weight gain, etc. She had a central line placed, going in to her heart for easy administering of the drug, and I think this was one of the hardest procedures she had to go through. She hated that thing. But she was amazing. I think she went in for a ninth, but her body was too weakened by this point to take anymore. This was over the course of about 8 months.
The biopsy showed that the tumors were all malignant and that they were in fact renal cells. Meaning, her cancer was officially stage four.
Within weeks, she was packing and moving down to Houston to live with us. We got her in to see the doctors and they wanted to put her on a clinical trial to begin with. She agreed and for the next 6 weeks, she and I each gave her injections of this drug twice a day. That was not fun. I practiced on oranges.
We went back in when her time was done and she was rescanned. It had grown, if such a thing was possible. One of the tumors had almost doubled in size. Her largest was over 5cm. Her doctor told her her “Life was in jeopardy” and she had to act swiftly. It was September now, and she had some hard decisions to make. We drove up to St. Louis, spent a few days cleaning her house, and got a realtor. Her house sold in one day, for much more than she expected to make on it. But it broke her heart to have to sell it. I wanted to stay and pack up the house, knowing all of her things would have to go into storage, but she was determined that her treatments couldn’t wait. We left and her home ward took care of packing and cleaning the house for her and putting it all into storage for her. It was a true service project, and she was so very grateful.
The GU clinic at MDA sent her over to the Melanoma Clinic for her High Dose IL-2 care, as they are the ones who administered the drug, which had to be given in the ICU. Some patients had died just from taking this drug, hence the need for it to be given in ICU. I remember there was a man who was, months before, coming to MDA and they had asked mom if he could take her place in line for the drug, (this was before she even started the clinical trial), and she said absolutely. We found out at this point, that this man had died in the ICU taking the IL-2. She was very saddened by this, but not discouraged. She never got discouraged.
We met Dr. Patrick Hwu and his amazing team in October and they set up for her to begin High Dose IL-2 the week before Halloween. I don’t remember the specifics of the IL-2 dosing, but it was something like… with High Dose IL-2, you get over 600,000 mg(?) kg(?) every 8 hours for as many doses as you can take, while regular interleukin is significantly lower. It can kill your heart. It is highly toxic. She went into the ICU and received her first dosage with no problems, then her second. I came back to the ICU the next day and she was a different person. She looked as though she had aged years. She was puffy and swollen and was hallucinating. And yet, her heart was strong. It was always strong. She took the High Dose Il-2 for 4 days, I don’t remember how many doses she got in that time, and at the end, she was not herself. They put her on lasix to remove the over 40 pounds of water weight she had gained, and moved her out of the ICU to recover for 3 days. She came home after that to recover for 3 weeks before going back to do it again. Most patients, at that time, made it through about 3 of these weeklong cycles, before quitting, or before their body just can’t take it anymore. Mom took 8 of these week long ICU cycles, each time her body getting more and more weak, more and more hallucinations, weight gain, etc. She had a central line placed, going in to her heart for easy administering of the drug, and I think this was one of the hardest procedures she had to go through. She hated that thing. But she was amazing. I think she went in for a ninth, but her body was too weakened by this point to take anymore. This was over the course of about 8 months.
2005-2006
Dr. Hwu and his staff were incredible. And they loved her and cared for her. Her attitude was, well, if you knew my mom, you can guess what her attitude was. She was Amazing. And she made so many friends with the nurses in the ICU and on the regular recovery floor as well. They even chose to put her on the cover of one of MDA’s research magazines! She had a blast with that and thought it was hilarious! The picture is of her and Dr. Hwu looking at her scans on a computer screen. They were both smiling in the picture and, during the shoot, were making all kinds of jokes about how if anyone could make out what was on the scans, they’d wonder why in the world they were smiling at them!!! The scans they were using were of when she first came to MDA, and they weren’t pretty!! But the IL-2 was successful in removing all but the most stubborn of her tumors, there were two left; the big one and a smaller one. But her new scans showed that they were all dying from the inside out, and even though she wasn’t receiving anymore IL-2, they would continue to do so. She was invited to be a guest of honor at the opening of the Red McCombs Research Center at MDA.
She was very sad to leave Dr. Hwu’s care, but he was only her IL-2 doctor and she had to go back to the GU clinic. Dr. Tannir was her doctor there. They decided that she would go on a drug called Avastin. It had very low side effects and very little risk, but had proven to be effective. She went down to MDA every two weeks for her 90-minute infusion. It was not technically “chemo” so she did not lose her hair, but she did gain weight and was tired a lot. She had a picc line placed to receive this drug. She began this in August of 2005 and took it for over a year, during which Nathan was gone quite a bit with military training. We enjoyed that she did not have side effects that made her overly sick and we spent a lot of time playing and traveling to the beach, between her every two week visits to MDA and her regular scans… she hated those scans. Her condition was “stable”. Every time we went to MDA they said she was “stable”, which meant, it isn’t growing, but it isn’t going away either. Dr. Tannir said that they were “buying her time”.
She was very sad to leave Dr. Hwu’s care, but he was only her IL-2 doctor and she had to go back to the GU clinic. Dr. Tannir was her doctor there. They decided that she would go on a drug called Avastin. It had very low side effects and very little risk, but had proven to be effective. She went down to MDA every two weeks for her 90-minute infusion. It was not technically “chemo” so she did not lose her hair, but she did gain weight and was tired a lot. She had a picc line placed to receive this drug. She began this in August of 2005 and took it for over a year, during which Nathan was gone quite a bit with military training. We enjoyed that she did not have side effects that made her overly sick and we spent a lot of time playing and traveling to the beach, between her every two week visits to MDA and her regular scans… she hated those scans. Her condition was “stable”. Every time we went to MDA they said she was “stable”, which meant, it isn’t growing, but it isn’t going away either. Dr. Tannir said that they were “buying her time”.
2007-2008
Mom began Sutent in 2007, when it was decided that Avastin was no longer keeping her stable. The cancer was growing again. She began this about the same time that we had to move to Alabama for Nathan’s flight school. It was very hard for me to leave her. Sutent was much more of a traditional chemo. It was a pill that she had to take every day. It was very hard on her. She lost SO much weight, lost a lot of her hair, and was very uncomfortable. She was very anemic and had to have regular blood transfusions. She took Sutent for one year. Thankfully, she had made some amazing friends in Houston and I knew she was in good hands.
August 2008, my brother got married. My mom said that was the only thing she wanted to see, was to know that Matthew was taken care of. She went to Six Flags and rode the Evil Knievil roller coaster! I thought that was gonna kill her! But she loved roller coasters and was determined! (See the picture in the video tribute above)
August 2008, my brother got married. My mom said that was the only thing she wanted to see, was to know that Matthew was taken care of. She went to Six Flags and rode the Evil Knievil roller coaster! I thought that was gonna kill her! But she loved roller coasters and was determined! (See the picture in the video tribute above)
September 2008
In September, it was decided that Sutent wasn’t working. Mom was ready to stop altogether. The last 4 years had taken their toll and she was tired of fighting. This was so hard for me to accept. They wanted her to try one more clinical trial. She took it for about 6 weeks (Torisel).
"""Excerpt From Journal September 2, 2008: Yesterday she told me she wasn't sure she wanted to fight it anymore. I have been alternating between crying my eyes out and trying to be supportive. I just wanna SCREAM! And be selfish and say!NO! Damn it. You're not allowed to give up!!! My kids need their Grannni. You can't just let it win. And yet what do you do when the person who is sick just doesn't wanna go through what it takes to fight it. Like I said before, the Torisel stopped working and they wanna put her on some seriously strong chemo, but they weren't really specific about how much growth there's been, etc. She's tried so many things... been through so damn much over the last five years... she's worried that the 4 months they gave here won't change and that she'll spend those 4 months miserable and sick to the "inevitable end". She said she'd rather spend those 4 months up and doing what she wants. MD Anderson is really great, but I am a little peeved at them right not. Aren't they supposed to present the treatment to her in a big box that has HOPE written on it??!?!?!?”””
"""Excerpt from September 3, 2008: “”Well, she talked to the doctor today. Why the hell didn't they tell her any of this before?!? It's in her lungs now. They thought it was just nodules before, but it's more defined now. Definitely in her right lung. And the largest one on her liver is now 9.8 cm x 6 cm. That's the biggest of the 2. She had 5 going into this so I guess all her 5 years of treatments did buy her time, just not a cure... and not enough time by me... but I'm not ungrateful... just ... you know...
They told her that this chemo is actually tolerated quite well, so she is going to try it. (I'm glad.) They also told her it is the last thing that's available to her. She's tried everything else. They are (obviously) aiming for stabilization now, not a cure. There are no cures for kidney cancer.
::Deep breath::
She starts on Friday. It's actually a chemo cocktail, so a pill a day and an infusion every two weeks. I just want her around for Christmas (and New Years, and Easter, and my kids' birthdays...). She will be rescanned at Halloween. Boo.””
"""Excerpt From Journal September 2, 2008: Yesterday she told me she wasn't sure she wanted to fight it anymore. I have been alternating between crying my eyes out and trying to be supportive. I just wanna SCREAM! And be selfish and say!NO! Damn it. You're not allowed to give up!!! My kids need their Grannni. You can't just let it win. And yet what do you do when the person who is sick just doesn't wanna go through what it takes to fight it. Like I said before, the Torisel stopped working and they wanna put her on some seriously strong chemo, but they weren't really specific about how much growth there's been, etc. She's tried so many things... been through so damn much over the last five years... she's worried that the 4 months they gave here won't change and that she'll spend those 4 months miserable and sick to the "inevitable end". She said she'd rather spend those 4 months up and doing what she wants. MD Anderson is really great, but I am a little peeved at them right not. Aren't they supposed to present the treatment to her in a big box that has HOPE written on it??!?!?!?”””
"""Excerpt from September 3, 2008: “”Well, she talked to the doctor today. Why the hell didn't they tell her any of this before?!? It's in her lungs now. They thought it was just nodules before, but it's more defined now. Definitely in her right lung. And the largest one on her liver is now 9.8 cm x 6 cm. That's the biggest of the 2. She had 5 going into this so I guess all her 5 years of treatments did buy her time, just not a cure... and not enough time by me... but I'm not ungrateful... just ... you know...
They told her that this chemo is actually tolerated quite well, so she is going to try it. (I'm glad.) They also told her it is the last thing that's available to her. She's tried everything else. They are (obviously) aiming for stabilization now, not a cure. There are no cures for kidney cancer.
::Deep breath::
She starts on Friday. It's actually a chemo cocktail, so a pill a day and an infusion every two weeks. I just want her around for Christmas (and New Years, and Easter, and my kids' birthdays...). She will be rescanned at Halloween. Boo.””
October and November 2008
In October, we spent a week together in Destin, FL. We ate, slept, sat on the beach, and nothing else! She didn’t have the energy for any more than that. It took all she had just to walk out onto the sand. It was a wonderful week.
They rescanned her right before Halloween. There was “nothing else they could do.” I was glad that she had been willing to even try the clinical trial. I knew it wasn’t like her to just give up. At least now I had a definitive answer. There was nothing else they could do. They would not give her a “time”, but said that if she wanted to see her family, she needed to do it now. I asked if she would come to Alabama to be with us for a short time, and her doctor said if she left, she wouldn’t come back. She was down to about 110 pounds. My mother said she had never been 110 pounds in her life! And the Sutent had aged her. My husband commented on how shocking it was to see her, as she looked years older. So I set out for Houston with Isaac and Sammy in tow the first week of November. My brothers made plans to come the week before Thanksgiving to see her.
""Excerpt from Journal October 30, 2008: "I can't believe this is it. Mom got rescanned for the last time yesterday. Her friend drove her down to MD Anderson this morning to meet with the doctor.He said the cancer has taken over her liver, completely. There is nothing left that they can give her. She has, over the last five years, taken everything they can offer to kidney cancer patients. The only thing there is left to give her is clinical trials, and she's apparently not healthy enough for that. Basically the various drugs they have given her over the last year have done nothing, and it's grown to the point that they can't do anything else. I had a dream last night that she had gone to the doctor and they told her that it had gone down by 2/3 what it was. Silly dream. They told him that I wanted her to come stay with me for a few weeks. He said that if she flew here, she wouldn't make it back. He told her "goodbye" and then his PA came in, the woman mom has been seeing most of the time for the last 5 years. She was crying, and very upset, according to my mom's friend, Lorraine who was there with her. She told my mom that she was her "favorite". If you'd ever met my mom, you'd know this was easily the case. Then they left MD Anderson for the last time... what a trip it's been. She's spent more time in that place than any one person should have to. So, I'm moving back to Texas. By the end of next week at the latest. Still have to talk to the hubby and figure out what I'm gonna do with the kids. Take 'em with? Most likely. Gonna have to find a place to live, somewhere she'll be comfortable until she goes to Hospice, unless she changes her mind and decides to pass at "home". The doctor said that if we want to have anytime left with her, good quality time, we need to go in the next month." Close Excerpt"""
We spent the first week after I got there making plans. We found a cemetery that was doing green burials, which is what she wanted. We bought a plot, planned her funeral, went out to eat, and enjoyed our time together. We looked into getting an apartment. I seriously thought that she had at least till Christmas and we thought we would get an apartment, since hers was so tiny and I had my two youngest boys with me. The night after we signed on a lease, we both couldn’t sleep. I had a … negative feeling about it and mom confessed that she didn’t think it would be necessary, as she didn’t think it would be much longer. Hospice brought her in a hospital bed. By the end of that week, she had lost function in her hands. We went to Garden Ridge (I haven’t been in one since) and she couldn’t drive the motorized buggy. She said it was broken, but she wasn’t able to hold the handle forward to drive it. She couldn’t hold a fork. I have so many mixed feelings about how misinformed I was and she had been at this point. I hadn’t known to expect any of this. By Sunday, she couldn’t walk, and fell trying to get out of bed. I had to carry her to the bathroom. She was confused and told me that her bed moved because I hadn’t locked it. I called the after hours care and the nurse came to see her. He was incredibly rude. I asked if I needed to move my brothers’ flights up to come to see her. He told me no, she was young and it would still be awhile. We thought maybe it was her ammonia and calcium levels rising, causing her to act this way and that she still had time.
"""Excerpt from an email that week: “She wanted to get out this morning, so we went to the store, but she couldn't push the handle on the cart forward to make it go, and kept saying the cart was trying to stop her. So we came home and she went straight to bed. I made her take the Lactulose. She was sleeping all day, not making sense at all, and SO weak. Tonight I called the nurse again and demanded that someone come look at her, since no one has been since ... wednesday, I think. I was worried about her ammonia levels. A nurse came and told me it was most likely just progression of disease, that her eyes weren't jaundiced, but her blood pressure was 93 over 40. She's just so weak!!! She told him that she was confused as to why she was confused. *sigh* She kept trying to prove to him she had no pain. She tried to sit up and prove it and she kept tumbling back onto the bed. I told her that she MUST have me help her get up, if she needs to, as they haven't brought a bedside commode or mattress pads or anything. (I am SO frustrated right now!!) So I was sitting out here and I thought I heard her move, so I jumped up and right as I am at the door, I hear a bang and she yells. She tried to get up and walk to the potty. She CAN'T! But she doesn't understand that!!!!! She looked at me with hugs eyes and said the bed moved. It's locked. I couldn't move it, much less someone her size. She miscalculated. But she had to go potty, and no commode, so she wasn't gonna bother me, she was just gonna do it, and she fell. She's okay, though she might be bruised tomorrow. I then lifted her off the floor, and carried her into the bathroom, being stupid and not taking the phone with me. New rule, phone in pocket at all times. She was falling off the potty, so I had to hold her there, resting on my shoulder. She finished and I carried her back into the bedroom. I can't do this alone. At all. I told her to call me. I told her don't get up. She doesn't understand. She says she doesn't understand why she's confused. *gah* That's because she's confused!! I am gonna have to have someone come in here and help me…”"""
Her Hospice Nurse came in the following Monday morning and had crisis care in there that very day, 24-hour care. It all happened so quickly after that. My brothers’ moved their flights up to Wed and Friday. She was practically comatose by Monday night. My older brother moved his flight up to the next morning and my younger brother was there the next afternoon. Her blood pressure was dropping rapidly. She wasn’t speaking anymore and we were all jumping at the slightest noise she made.
The people in Houston were amazing; my kids were taken to be watched every day and night starting on Monday so I didn’t have to worry about them. We had food brought in so my brothers and I and my younger brother’s wife didn’t have to leave. We stayed by her bedside, played games, ate, and watched movies in her little apartment while the nurses came in and helped us take care of her. It was a wonderful bonding time, though we expected to lose our mom at any moment. Someone mentioned, by the end of the week, that it was her gift to us, this bonding time.
She was holding on for something and by Friday we were at a loss as to what it was. She was unresponsive and comatose. Nathan came on Thursday with David and Saturday night, a friend came to sit with her so we could all get out for a break. When we came back, we realized that our night nurse hadn’t showed up and we were on our own. This was terrifying. We took shifts. We were already exhausted from the incredibly emotionally draining week. Sunday morning our nurse from Saturday came back, and mom passed away that afternoon. Once again, her heart was the last to stop. She had a strong heart, in many ways. She once told me, when I was younger, that she thought she’d die of a heart attack. It’s interesting to me now that that was the last thing of hers to give up.
How do you even begin to cover the myriad of details that you go through when someone you love has cancer? There were more details, experiences, prayers, blessings, financial woes, financial blessings, scans, drugs, sickness, unfulfilled dreams and expectations that I haven’t included in this brief history. I am sure I will want to add more details to it later. But for now, this is a starting place. Later I’ll write about her funeral service and the week following her death.
They rescanned her right before Halloween. There was “nothing else they could do.” I was glad that she had been willing to even try the clinical trial. I knew it wasn’t like her to just give up. At least now I had a definitive answer. There was nothing else they could do. They would not give her a “time”, but said that if she wanted to see her family, she needed to do it now. I asked if she would come to Alabama to be with us for a short time, and her doctor said if she left, she wouldn’t come back. She was down to about 110 pounds. My mother said she had never been 110 pounds in her life! And the Sutent had aged her. My husband commented on how shocking it was to see her, as she looked years older. So I set out for Houston with Isaac and Sammy in tow the first week of November. My brothers made plans to come the week before Thanksgiving to see her.
""Excerpt from Journal October 30, 2008: "I can't believe this is it. Mom got rescanned for the last time yesterday. Her friend drove her down to MD Anderson this morning to meet with the doctor.He said the cancer has taken over her liver, completely. There is nothing left that they can give her. She has, over the last five years, taken everything they can offer to kidney cancer patients. The only thing there is left to give her is clinical trials, and she's apparently not healthy enough for that. Basically the various drugs they have given her over the last year have done nothing, and it's grown to the point that they can't do anything else. I had a dream last night that she had gone to the doctor and they told her that it had gone down by 2/3 what it was. Silly dream. They told him that I wanted her to come stay with me for a few weeks. He said that if she flew here, she wouldn't make it back. He told her "goodbye" and then his PA came in, the woman mom has been seeing most of the time for the last 5 years. She was crying, and very upset, according to my mom's friend, Lorraine who was there with her. She told my mom that she was her "favorite". If you'd ever met my mom, you'd know this was easily the case. Then they left MD Anderson for the last time... what a trip it's been. She's spent more time in that place than any one person should have to. So, I'm moving back to Texas. By the end of next week at the latest. Still have to talk to the hubby and figure out what I'm gonna do with the kids. Take 'em with? Most likely. Gonna have to find a place to live, somewhere she'll be comfortable until she goes to Hospice, unless she changes her mind and decides to pass at "home". The doctor said that if we want to have anytime left with her, good quality time, we need to go in the next month." Close Excerpt"""
We spent the first week after I got there making plans. We found a cemetery that was doing green burials, which is what she wanted. We bought a plot, planned her funeral, went out to eat, and enjoyed our time together. We looked into getting an apartment. I seriously thought that she had at least till Christmas and we thought we would get an apartment, since hers was so tiny and I had my two youngest boys with me. The night after we signed on a lease, we both couldn’t sleep. I had a … negative feeling about it and mom confessed that she didn’t think it would be necessary, as she didn’t think it would be much longer. Hospice brought her in a hospital bed. By the end of that week, she had lost function in her hands. We went to Garden Ridge (I haven’t been in one since) and she couldn’t drive the motorized buggy. She said it was broken, but she wasn’t able to hold the handle forward to drive it. She couldn’t hold a fork. I have so many mixed feelings about how misinformed I was and she had been at this point. I hadn’t known to expect any of this. By Sunday, she couldn’t walk, and fell trying to get out of bed. I had to carry her to the bathroom. She was confused and told me that her bed moved because I hadn’t locked it. I called the after hours care and the nurse came to see her. He was incredibly rude. I asked if I needed to move my brothers’ flights up to come to see her. He told me no, she was young and it would still be awhile. We thought maybe it was her ammonia and calcium levels rising, causing her to act this way and that she still had time.
"""Excerpt from an email that week: “She wanted to get out this morning, so we went to the store, but she couldn't push the handle on the cart forward to make it go, and kept saying the cart was trying to stop her. So we came home and she went straight to bed. I made her take the Lactulose. She was sleeping all day, not making sense at all, and SO weak. Tonight I called the nurse again and demanded that someone come look at her, since no one has been since ... wednesday, I think. I was worried about her ammonia levels. A nurse came and told me it was most likely just progression of disease, that her eyes weren't jaundiced, but her blood pressure was 93 over 40. She's just so weak!!! She told him that she was confused as to why she was confused. *sigh* She kept trying to prove to him she had no pain. She tried to sit up and prove it and she kept tumbling back onto the bed. I told her that she MUST have me help her get up, if she needs to, as they haven't brought a bedside commode or mattress pads or anything. (I am SO frustrated right now!!) So I was sitting out here and I thought I heard her move, so I jumped up and right as I am at the door, I hear a bang and she yells. She tried to get up and walk to the potty. She CAN'T! But she doesn't understand that!!!!! She looked at me with hugs eyes and said the bed moved. It's locked. I couldn't move it, much less someone her size. She miscalculated. But she had to go potty, and no commode, so she wasn't gonna bother me, she was just gonna do it, and she fell. She's okay, though she might be bruised tomorrow. I then lifted her off the floor, and carried her into the bathroom, being stupid and not taking the phone with me. New rule, phone in pocket at all times. She was falling off the potty, so I had to hold her there, resting on my shoulder. She finished and I carried her back into the bedroom. I can't do this alone. At all. I told her to call me. I told her don't get up. She doesn't understand. She says she doesn't understand why she's confused. *gah* That's because she's confused!! I am gonna have to have someone come in here and help me…”"""
Her Hospice Nurse came in the following Monday morning and had crisis care in there that very day, 24-hour care. It all happened so quickly after that. My brothers’ moved their flights up to Wed and Friday. She was practically comatose by Monday night. My older brother moved his flight up to the next morning and my younger brother was there the next afternoon. Her blood pressure was dropping rapidly. She wasn’t speaking anymore and we were all jumping at the slightest noise she made.
The people in Houston were amazing; my kids were taken to be watched every day and night starting on Monday so I didn’t have to worry about them. We had food brought in so my brothers and I and my younger brother’s wife didn’t have to leave. We stayed by her bedside, played games, ate, and watched movies in her little apartment while the nurses came in and helped us take care of her. It was a wonderful bonding time, though we expected to lose our mom at any moment. Someone mentioned, by the end of the week, that it was her gift to us, this bonding time.
She was holding on for something and by Friday we were at a loss as to what it was. She was unresponsive and comatose. Nathan came on Thursday with David and Saturday night, a friend came to sit with her so we could all get out for a break. When we came back, we realized that our night nurse hadn’t showed up and we were on our own. This was terrifying. We took shifts. We were already exhausted from the incredibly emotionally draining week. Sunday morning our nurse from Saturday came back, and mom passed away that afternoon. Once again, her heart was the last to stop. She had a strong heart, in many ways. She once told me, when I was younger, that she thought she’d die of a heart attack. It’s interesting to me now that that was the last thing of hers to give up.
How do you even begin to cover the myriad of details that you go through when someone you love has cancer? There were more details, experiences, prayers, blessings, financial woes, financial blessings, scans, drugs, sickness, unfulfilled dreams and expectations that I haven’t included in this brief history. I am sure I will want to add more details to it later. But for now, this is a starting place. Later I’ll write about her funeral service and the week following her death.
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