A month doesn't seem very long but for someone waiting for their life to end and begin again, each moment seems to drag and each day turns into an eternity at times. Waiting for the stems cells to renew themselves somewhere in a frozen tundra deep in the caves of Baylor Sammons somewhere is a process that has kept Phil in a state of what I call Casting Away. Remember the movie with Tom Hanks and his infamous soccer ball that came to life because he had no one else to talk to? Well, it's not quite that bad but Phil and his back yard have become quite intimate. It has not come to the point to where he has cut his finger and marked it with his blood like Tom did to put a face on his soccer ball named Wilson but he has put his blood sweat and tears into each intimate detail of every corner.
Let me just take a moment to honor his Japanese Maple Tree. This tree has been his pride and joy for three years now. He has watched it and loved it dearly and honestly, it has not grown one bit and I have wondered where all the love, more like lust was coming from and why. This year, he plotted out the perfect place for it. Sitting outside at mid-day and sunset for about a week to make sure that just the right amount of sun would bathe this delicate baby of his, he spotted the perfect location and the day finally arrived for the removal and the burial of the surprisingly small amount of roots from this Oriental delicacy. He planted it with great caution and joy and to my great surprise, it did look almost full and as if it came alive. He was pleased.
Phil has been exceptionally tired and somewhat depressed and apprehensive the last few weeks. Doubting his ability to endure and fear of what lies ahead have kept him from being able to experience any real joy within the confines of our home. He was quarantined to these four walls in order to keep him from any germs that might leap through the air and land spontaneously on his weakened body and spin him into a compromised situation which would not allow him to be in the best possible health to receive his own stem cells back. It just pretty much stinks all the way around. His appetite has been up and down. We never know if he is going to be hungry or not. The first bite usually tells us and if it's a thumbs up, then all that work put into creating a masterpiece was worth it, if not, down the sink it goes. It's easy to get discouraged during this time and chin up is not as easy as it sounds. Living it day by day, minute by minute is just dad gum hard sometimes. For both of us.
We both know that life will get better and that the corner is up ahead but getting to that corner and turning it is like after a really hard work out. The next day your muscles are so sore that you think you are gonna die so moving is really not the option you want to choose but you have to or else you will really be sore!
Phil's neuropathy is so much better so for that we are thankful so small blessings are very much appreciated along the way. Muscle fatigue in his lower back is what seems to take him down easily and it frustrates him to the point of sending him to the bed with the heating pad. Sleep seems to help and he does a lot of that lately. His white blood count is very low right now so with his weakened state and the endless waiting game, the days are sometimes excruciatingly long.
Wednesday, April 4, 2012
Tuesday, March 20, 2012
Eight MILL I O N stem cells!
The phone rang early on Tuesday morning around 8:00 a.m. and Baylor Hospital was calling my cell phone to tell us that Phil had once again leaped far beyond the attempted harvest of four to five million stem cells and came steaming across the finish line with eight million collected in his efforts with just one session. Phil was sound asleep and I didn't want to wake him because he seemed quite content but around 11:00 a.m. I tip-toed into the bedroom and told him what a stud he was and how many stem cells they were able to collect. He smiled wide with his eyes closed.
He was very tired. His body was depleted from the last few days and he had just given it his all. It was difficult for him to pull himself up out of bed and get into the shower. He laid there about half an hour before he could muster the energy and then it was right back to the bed after that. I made him some tea and toast and that helped a little but his legs and feet felt like they weighed 100 lbs. each.
We met with Dr. Fay and his booming voice at Baylor Sammons to go over the results and to talk about the next step. We had in front of us the schedule for the stem cell replacement which would take place in three weeks and would start the second week in April starting with the OTHER monster chemo. This time, his hair really was going to fall out. He assured us of that. The schedule is packed and would require seven days a week travel back and forth to the hospital, downtown Dallas, for a good solid three weeks. This time it will take his immune system down to ground zero. This time, we are a little more apprehensive.
The consent form is the next consultation before the stem cell replacement. Why wasn't that done before they took his stem cells out? Trust is a big factor in this whole process and Dr. Fay talks with big words and big terms and I have to listen from underneath my eyebrows while chewing the inside of my mouth so I can concentrate on every loud and every determined word that comes out of his educated lips. Sometimes I catch myself distracted by his wiry eyebrows though and wonder if I could comb them up and snip them without him noticing. I shake his large hand goodbye and leave in a comma type state asking myself, "now what did he just say and what am I supposed to do?". It takes two of us to decipher but mostly Phil can talk his lingo. I just go along to be the comfortable side of life as opposed to the clinical side and reassure Phil that I can go with him on most of his appointments. It's a very important job they tell me.
He was very tired. His body was depleted from the last few days and he had just given it his all. It was difficult for him to pull himself up out of bed and get into the shower. He laid there about half an hour before he could muster the energy and then it was right back to the bed after that. I made him some tea and toast and that helped a little but his legs and feet felt like they weighed 100 lbs. each.
We met with Dr. Fay and his booming voice at Baylor Sammons to go over the results and to talk about the next step. We had in front of us the schedule for the stem cell replacement which would take place in three weeks and would start the second week in April starting with the OTHER monster chemo. This time, his hair really was going to fall out. He assured us of that. The schedule is packed and would require seven days a week travel back and forth to the hospital, downtown Dallas, for a good solid three weeks. This time it will take his immune system down to ground zero. This time, we are a little more apprehensive.
The consent form is the next consultation before the stem cell replacement. Why wasn't that done before they took his stem cells out? Trust is a big factor in this whole process and Dr. Fay talks with big words and big terms and I have to listen from underneath my eyebrows while chewing the inside of my mouth so I can concentrate on every loud and every determined word that comes out of his educated lips. Sometimes I catch myself distracted by his wiry eyebrows though and wonder if I could comb them up and snip them without him noticing. I shake his large hand goodbye and leave in a comma type state asking myself, "now what did he just say and what am I supposed to do?". It takes two of us to decipher but mostly Phil can talk his lingo. I just go along to be the comfortable side of life as opposed to the clinical side and reassure Phil that I can go with him on most of his appointments. It's a very important job they tell me.
Sunday, March 18, 2012
Blessings Abound....
Phil and I are amazed each day at the people and the angels that reach out to us and that touch our lives and bless us. People we barely know have been more than amazing and then there are those that we have known for many years that just bless us beyond measure. We try to stay positive and so far I think we have done a pretty good job. The manifestation of the stress comes out in ways that we don't even realize at times and we have to step back and take a breath now and then. Others say they don't know how we do it but when you are in the situation, you just start swimming when thrown in the pool of life and really don't think about how tired you are. You just know that you have to get to the other side. Little and big blessings never cease to amaze us and we are constantly humbled and grateful for God's grace and wonderful people in our lives.
Day seven of receiving shots for cell stimulation has yet to take Phil down. He has for the most part worn a red cape and flown through with rave reviews and amazing results. We have been stressing and anticipating all kinds of residual effects from the monster chemo for months. We were told there may be vomiting, diarrhea, lack of energy, 24 hour care needed, high risk of infections, etc. Oh, and let's not forget loss of hair. The only real pain was deep bone pain and a few bouts of dizziness with some weariness.
I was able to take a business trip in the middle of the stem cell shots in anticipation of the next round of time that I may have to take off. After the next round of chemo and the stem cells replaced, that's when I anticipate having to take the bulk of my time off. They have told us (they meaning, many different nurses and the doc) that the chemo will literally carve away the marrow in preparation for the new stem cells. The one thing that we are pretty sure of is that Phil will loose his hair. He is very sad about that but more sad about loosing his eyebrows. He teased and said that he might glue on his fallen arm hairs for eyebrows. While shopping in one of the gift shops at the hospital one day while Phil had one of his all day sessions, I happened upon eyebrow kits, yep, eyebrow kits. Phil was so excited! Since Phil played football for so long, he was a little afraid of the shape of his head without hair but add to the mix, the disappearance of eyebrows to break the fall, let's face it, a tree without leaves AND bark is pretty bare. I still think he will be very handsome though. Gotta love that athletic chin! Besides, we got him some smokin hats just like Samuel Jackson wears and some colored shades to boot.
March Madness could not have come at a better time and with the success of the mighty Kentucky Cats Phil is a happy boy so far. This will keep him occupied and his mind off of his ever present and pending cloud that he deals with on a daily basis. He is more like his old self and has a great attitude. Of course we can't be sure of anything but with the great results from everything else so far, we are anticipating excellent results. Stay tuned!
Day seven of receiving shots for cell stimulation has yet to take Phil down. He has for the most part worn a red cape and flown through with rave reviews and amazing results. We have been stressing and anticipating all kinds of residual effects from the monster chemo for months. We were told there may be vomiting, diarrhea, lack of energy, 24 hour care needed, high risk of infections, etc. Oh, and let's not forget loss of hair. The only real pain was deep bone pain and a few bouts of dizziness with some weariness.
I was able to take a business trip in the middle of the stem cell shots in anticipation of the next round of time that I may have to take off. After the next round of chemo and the stem cells replaced, that's when I anticipate having to take the bulk of my time off. They have told us (they meaning, many different nurses and the doc) that the chemo will literally carve away the marrow in preparation for the new stem cells. The one thing that we are pretty sure of is that Phil will loose his hair. He is very sad about that but more sad about loosing his eyebrows. He teased and said that he might glue on his fallen arm hairs for eyebrows. While shopping in one of the gift shops at the hospital one day while Phil had one of his all day sessions, I happened upon eyebrow kits, yep, eyebrow kits. Phil was so excited! Since Phil played football for so long, he was a little afraid of the shape of his head without hair but add to the mix, the disappearance of eyebrows to break the fall, let's face it, a tree without leaves AND bark is pretty bare. I still think he will be very handsome though. Gotta love that athletic chin! Besides, we got him some smokin hats just like Samuel Jackson wears and some colored shades to boot.
Here's that chin I was referring to. This was taken last week coming in from yardwork.
March Madness could not have come at a better time and with the success of the mighty Kentucky Cats Phil is a happy boy so far. This will keep him occupied and his mind off of his ever present and pending cloud that he deals with on a daily basis. He is more like his old self and has a great attitude. Of course we can't be sure of anything but with the great results from everything else so far, we are anticipating excellent results. Stay tuned!
Sunday, March 11, 2012
Stem Cell Replacement Begins
The first step of stem cell replacement is to make sure that you are healthy enough. All of Phil's vitals looked great! He couldn't be a more perfect candidate. We were so happy about that because it puts him in a great position to possibly be cured, YES CURED of this disease. Dr. Fay said that in his description and letter to Phil so we questioned him about it the next time we met with him. Phil asked him about his assessment and the wording of his letter where he said the word cured. Dr. Fay in his booming voice said without hesitation, "You're DAMN right I said CURED!" We were never so happy to hear a cuss word in our lives! That was clear, precise and from a doctor that has an incredible reputation. We were off to the races.
Phil was feeling great, eating well, in fact so well that he had gained back almost 12 lbs. and looking rather dapper if I might say so myself! We were having fun and he was acting like his old self again. He was doing some chores around the house and loving my cooking again. Hallelujah! It was so exciting! The part that stunk was that he was going to have to submit to feeling like poop again so he could be committed to being well. We had gone out for Valentines Day with our good friends Bobbie and Keith and had a wonderful time and met new friends and been able to do several other group things. It felt good to start living again. Phil actually had a glass of wine on Valentines Day. He had not had a drop of alcohol since October. Clothes started looking good on him again. Instead of sitting on the back porch just staring off into space, he was pulling weeds, cutting the grass, trimming the trees. Oh great day! He was actually afraid that the insurance company would see him and cut off his disability. What they didn't know is that he would pay for it at night but it sure felt good while he was able to do it.
Phil went in for his initial testing to make sure everything was A OK for all to begin. The next day we arrived at Baylor Sammons for the second port to be put in his neck. He still had his port on his left side for all the previous chemo sessions but needed a second port for the next procedure. Why? We really don't know. This second port was a line that was tunneled straight to the jugular vein. I'm probably not saying that right but it rested on top of the heart. The PA that performed the surgery and the nurses that assisted her all came out to talk to me during the procedure a few times. They all made it a point to tell me that Phil was rather chatty and that he liked to sing. This made me laugh and lightened my heart since I was rather tense earlier and shed a few tears as they accompanied him back to surgery. He actually walked out of surgery with a clear patch over the ugly computer looking device that was hooked to wires coming out of his neck with three different tubes. Yuck.
We got home and Phil was so tired so he laid down. About ten minutes later Phil came out of the bedroom and asked me if he was bleeding. Was he bleeding? Oh my gosh! The clear bubble bandage area was filling up with blood. This is not for the light hearted! It kept getting worse so we called the surgery center and I got on the phone with the PA that performed the surgery. She wanted us to come back to the emergency room so they could take a look at it. It was 4:00 and we were an hour away in rush hour traffic and she wouldn't be the one looking at it but they had the records. Or we could go to the local Baylor Emergency room and they could look at it. Well, that's another three hours at least at a hospital, another $100 visit. They were really sorry, but. I called my nurse friend Karen who was shopping at the grocery store. She came right over and said that it was a slow leak and it wasn't life threatening. Well, that was all Phil needed to hear. He wasn't going to any emergency room after that! It started filling up more and more and he started feeling pressure. I sent Karen a picture over my iphone. Thank goodness for modern technology. She wasn't going to him not to go but "professionally" she felt obligated to encourage us to get it checked out. Phil was in medical sales for 25+ years. He has been in and out of operating rooms for years so he took our handy dandy fireplace lighter and a needle and headed to the bathroom. I had no idea he was doing this, nor did he tell me what he was about to do. He heated up, he called it sterilizing, the needle and slid it up under the clear bubble bandage releasing blood all over his chest and stomach. He said he was glad I wasn't in there. Well, I'm glad too. The bandage on top had bled through also. It was getting nasty. We think the problem is that he was taking an aspirin a day and his blood was thin. Well, now that's a problem!
We headed to Baylor Sammons the next morning where the attending nurse didn't seem too alarmed by the bloodied bandage. She just said, "OK, we'll clean that up". Glad we didn't spend the money to hear that last night. Phil was hooked up to his pole who he has affectionately named Twiggy and the procedures began. The first was hydration which was a two hour bag, then medication for nausea, then the killer chemo called Cytoxin for two hours, then two hours of hydration again. It was a very long day.
The next morning we headed back to Baylor Sammons and sure enough the bag was almost empty. Phil had tinkled 7 times in 10 hours. They were pleased. They said that some people just don't cooperate. Phil was feeling tired and ready to just sleep by then. We waited in the small room and the PA came in and when she got ready to remove the port, I excused myself. Phil said that he could feel it coming out and that it was about 12 inches long. Yuck. There was a hole in his neck and she made him sit for another 20 minutes to make sure that he wouldn't bleed out or anything before heading home. (I am actually throwing up in my mouth a little bit as I write this, seriously) We headed home without the bag this time and it always amazes me even though hubby is so tired, he is never to tired to "suggest" ways for me to drive differently than I am.
Phil was tired that day and I really didn't think he would be hungry but I had boiled some potatoes before I left for the hospital and I came home and made some home made potato soup. He ate all of it and said it was the best he had ever had. I'll have to put that one on my website! That's about all he ate that day other than one bite of the Egg Mc Muffin on the way to the hospital that he had to quickly wrap back up before he got sick. Applesauce was his choice for dinner. His stomach felt a little unsettled before bed but slept well that night. Day one down after the killer chemo, not so bad.
Phil was feeling great, eating well, in fact so well that he had gained back almost 12 lbs. and looking rather dapper if I might say so myself! We were having fun and he was acting like his old self again. He was doing some chores around the house and loving my cooking again. Hallelujah! It was so exciting! The part that stunk was that he was going to have to submit to feeling like poop again so he could be committed to being well. We had gone out for Valentines Day with our good friends Bobbie and Keith and had a wonderful time and met new friends and been able to do several other group things. It felt good to start living again. Phil actually had a glass of wine on Valentines Day. He had not had a drop of alcohol since October. Clothes started looking good on him again. Instead of sitting on the back porch just staring off into space, he was pulling weeds, cutting the grass, trimming the trees. Oh great day! He was actually afraid that the insurance company would see him and cut off his disability. What they didn't know is that he would pay for it at night but it sure felt good while he was able to do it.
Waiting for three hours for a surgery room to become available. We were bored so we took pictures.
We got home and Phil was so tired so he laid down. About ten minutes later Phil came out of the bedroom and asked me if he was bleeding. Was he bleeding? Oh my gosh! The clear bubble bandage area was filling up with blood. This is not for the light hearted! It kept getting worse so we called the surgery center and I got on the phone with the PA that performed the surgery. She wanted us to come back to the emergency room so they could take a look at it. It was 4:00 and we were an hour away in rush hour traffic and she wouldn't be the one looking at it but they had the records. Or we could go to the local Baylor Emergency room and they could look at it. Well, that's another three hours at least at a hospital, another $100 visit. They were really sorry, but. I called my nurse friend Karen who was shopping at the grocery store. She came right over and said that it was a slow leak and it wasn't life threatening. Well, that was all Phil needed to hear. He wasn't going to any emergency room after that! It started filling up more and more and he started feeling pressure. I sent Karen a picture over my iphone. Thank goodness for modern technology. She wasn't going to him not to go but "professionally" she felt obligated to encourage us to get it checked out. Phil was in medical sales for 25+ years. He has been in and out of operating rooms for years so he took our handy dandy fireplace lighter and a needle and headed to the bathroom. I had no idea he was doing this, nor did he tell me what he was about to do. He heated up, he called it sterilizing, the needle and slid it up under the clear bubble bandage releasing blood all over his chest and stomach. He said he was glad I wasn't in there. Well, I'm glad too. The bandage on top had bled through also. It was getting nasty. We think the problem is that he was taking an aspirin a day and his blood was thin. Well, now that's a problem!
He slept on a incline as long as he could that night before throwing it to the bottom of the bed and awoke the next morning still alive and well. I on the other hand didn't sleep well after reaching over and checking on him several times during the night to make sure he hadn't had a heart attack or bled to death or something. If I live through all of this it will be a miracle!The new port and beginning of the leaking. It got a lot worse before Phil performed his surgery.
We headed to Baylor Sammons the next morning where the attending nurse didn't seem too alarmed by the bloodied bandage. She just said, "OK, we'll clean that up". Glad we didn't spend the money to hear that last night. Phil was hooked up to his pole who he has affectionately named Twiggy and the procedures began. The first was hydration which was a two hour bag, then medication for nausea, then the killer chemo called Cytoxin for two hours, then two hours of hydration again. It was a very long day.
Phil with his best friend Maggie Mae watching t.v. after a very long day at the hospital.
At the end of the session the nurse rolled in an aqua colored bag with a 10 lb. bag of fluids hooked up to a battery pack. This was attached to a very long tube that was hooked up to Phil's neck. He was to keep this hooked up to his neck where the fluids from this large sack were going to be pumped into him all night long and into the next morning. He was to tinkle every two hours. Phil was more embarrassed about the color of the bag than anything. We rolled out of the doctors office with the aqua bag following us. Phil had to sit in the back seat with his new little friend. It's really hard having to take a suitcase with you wherever you go. You pretty much decide that moving around just isn't worth it sometimes. I slept upstairs with the walkie talkies that we had communicated with early on when Phil first came home from the hospital so he could call me in an emergency. One of us had to get some sleep.The next morning we headed back to Baylor Sammons and sure enough the bag was almost empty. Phil had tinkled 7 times in 10 hours. They were pleased. They said that some people just don't cooperate. Phil was feeling tired and ready to just sleep by then. We waited in the small room and the PA came in and when she got ready to remove the port, I excused myself. Phil said that he could feel it coming out and that it was about 12 inches long. Yuck. There was a hole in his neck and she made him sit for another 20 minutes to make sure that he wouldn't bleed out or anything before heading home. (I am actually throwing up in my mouth a little bit as I write this, seriously) We headed home without the bag this time and it always amazes me even though hubby is so tired, he is never to tired to "suggest" ways for me to drive differently than I am.
Phil was tired that day and I really didn't think he would be hungry but I had boiled some potatoes before I left for the hospital and I came home and made some home made potato soup. He ate all of it and said it was the best he had ever had. I'll have to put that one on my website! That's about all he ate that day other than one bite of the Egg Mc Muffin on the way to the hospital that he had to quickly wrap back up before he got sick. Applesauce was his choice for dinner. His stomach felt a little unsettled before bed but slept well that night. Day one down after the killer chemo, not so bad.
Getting Better
Phil had lost about 25 lbs. at Christmas time and he was starting to eat a little more each meal. He was still on chemo twice a week and the bone strengthener once a month. The stuff that strengthens your bones just knocks him down. We always dreaded that one. It is given to him through his port just before his chemo treatment of Velcade. I know the names of this stuff doesn't mean anything to anyone who doesn't have cancer because it certainly didn't to me before now. But for the benefit of those who know, I thought I would name it. Anyway, we had been waiting on insurance to OK us for the stem cell transplant procedure to start taking place and now it was the first of the year. My company had been bought out and we had a new insurance company. Great! I'm sure that was some of the delay but boy are we thankful for great insurance. I just don't know how people do this without insurance. We are so blessed with incredible coverage. God has just prepared us for this time with immeasurable blessings. My job, our insurance through my job, great family, great old friends, wonderful new friends, lots of prayers, I could go on and on. Back to my rambling.
The first time we met with Dr. Fay Phil was still having trouble with low blood pressure and being dizzy. He had to hold on to me, all of little me holding up big Phil. It was pretty funny thinking that I could hold him up but I did. Phil walked with a cane at that time. We walked into the office and they took his vitals and they were shocked that he was even standing. They immediately hooked him up to fluids and said that he needed to rest and when he was feeling better the doctor would be in. Our meeting was cut short because Phil was unable to comprehend everything because he was still a little dizzy. We just thought this was normal. Dr. Fay took him off of Velcade (the chemo) from twice a week to once a week. This helped a lot with the dizziness. Unfortunately, the neuropathy had set in.
Neuropathy. That was a big word that I first heard of when we went to a support group in December. Oh my gosh, the support group. That was a group of weirdos. I'm sorry but Phil and I decided not to be totally consumed with this illness and not to be focused on the effects, M spikes and whatever big words they had associated with it. Those people were obsessed with their illness. I sat there holding my breath the first hour and looked for a quick escape route the second hour. They had notebooks full of their stats and tried to outdo each other with their knowledge. I spoke up and just told them how much I did NOT know. They probably thought I was so stupid. I think you should be educated but I am not going to med school and I think that if I have a problem with what is going on, I will find someone else if I am not pleased with the results but oh my gosh! Phil and I felt like fresh meat. Any way, back to neuropathy. They were talking about the effects of it at that meeting and Phil had yet to experience any of that so we had not heard that word. Phil, of course knew what it was. This is where your limbs go numb and your feet feel like stumps, it is "nerve pain". You have trouble walking. Phil started feeling all of this in his legs. It makes it hard for him to stand for very long and walking is a problem. Thank goodness for the railing that my brother had installed in our shower shortly after Phil came home from the hospital. It really helped to steady Phil on many occasions.
Waiting on the insurance to approve the stem cell replacement was the next step. Sometimes the days were long for Phil and depression was hard for him. When you don't have something to look forward to, it gets difficult but he kept himself busy some days by researching an artist named Noel Rockmore and even purchased a few of his paintings. This became his new passion other than his football team, "Kentucky Cats". There were days that I would have to push him to get up and get out though because it's easy to stay settled and he would even say that he felt better when he moved around but getting him to do so sometimes was difficult.
The day came and we got the schedule for the stem cell replacement. The next trip to Dr. Davis would result in a 30 lb. loss in all. Now it was time to turn things around. Dr. Davis started giving Phil meds for his neuropathy to take 3 times a day. This seemed to help him quite a bit. Still it was difficult for him to stand long periods of time. The test of time will be to see if this goes away or not. They say that sometimes the neuropathy is permanent. We are praying that it is not.
Here is Phil getting chemo. The chairs are heated and have two massage levels. My chair is in the background. Notice he gets a warm blanket too!
We were finally able to meet with the doctor who would be performing the stem cell transplant. For those that don't know, let me explain. This is a procedure where they harvest stem cells from Phil's own blood, freeze them, then replace them after they have been cleansed and hopefully will produce new healthy stem cells in his bone marrow where the cancer is now. That is in very simple terms the way that I understand it and I'm sticking to it. The doctor that is treating Phil is Dr. Fay who is the doctor who started the entire stem cell transplant center at Baylor Sammons in Dallas with the Baylor system here. He is a large man with a large voice. When he talks it is with a loud and very pronounced volume. I feel like after every sentence you should hear the word, BOOM! He creates that much of a canyon in the air. I like him though and so does Phil. He talks above my head like most doctors do but I try my best to keep up. The first time we met with Dr. Fay Phil was still having trouble with low blood pressure and being dizzy. He had to hold on to me, all of little me holding up big Phil. It was pretty funny thinking that I could hold him up but I did. Phil walked with a cane at that time. We walked into the office and they took his vitals and they were shocked that he was even standing. They immediately hooked him up to fluids and said that he needed to rest and when he was feeling better the doctor would be in. Our meeting was cut short because Phil was unable to comprehend everything because he was still a little dizzy. We just thought this was normal. Dr. Fay took him off of Velcade (the chemo) from twice a week to once a week. This helped a lot with the dizziness. Unfortunately, the neuropathy had set in.
Neuropathy. That was a big word that I first heard of when we went to a support group in December. Oh my gosh, the support group. That was a group of weirdos. I'm sorry but Phil and I decided not to be totally consumed with this illness and not to be focused on the effects, M spikes and whatever big words they had associated with it. Those people were obsessed with their illness. I sat there holding my breath the first hour and looked for a quick escape route the second hour. They had notebooks full of their stats and tried to outdo each other with their knowledge. I spoke up and just told them how much I did NOT know. They probably thought I was so stupid. I think you should be educated but I am not going to med school and I think that if I have a problem with what is going on, I will find someone else if I am not pleased with the results but oh my gosh! Phil and I felt like fresh meat. Any way, back to neuropathy. They were talking about the effects of it at that meeting and Phil had yet to experience any of that so we had not heard that word. Phil, of course knew what it was. This is where your limbs go numb and your feet feel like stumps, it is "nerve pain". You have trouble walking. Phil started feeling all of this in his legs. It makes it hard for him to stand for very long and walking is a problem. Thank goodness for the railing that my brother had installed in our shower shortly after Phil came home from the hospital. It really helped to steady Phil on many occasions.
Waiting on the insurance to approve the stem cell replacement was the next step. Sometimes the days were long for Phil and depression was hard for him. When you don't have something to look forward to, it gets difficult but he kept himself busy some days by researching an artist named Noel Rockmore and even purchased a few of his paintings. This became his new passion other than his football team, "Kentucky Cats". There were days that I would have to push him to get up and get out though because it's easy to stay settled and he would even say that he felt better when he moved around but getting him to do so sometimes was difficult.
The day came and we got the schedule for the stem cell replacement. The next trip to Dr. Davis would result in a 30 lb. loss in all. Now it was time to turn things around. Dr. Davis started giving Phil meds for his neuropathy to take 3 times a day. This seemed to help him quite a bit. Still it was difficult for him to stand long periods of time. The test of time will be to see if this goes away or not. They say that sometimes the neuropathy is permanent. We are praying that it is not.
Settling In
The nights were the worst. Fear would overcome Phil in the worst of ways. The pain that he felt was unbearable and it was something that he had to learn to deal with eventually but in the beginning it was like a nightmare. It was almost as if he would become a scared little five year old that wanted to crawl into his parents bed and make the monsters disappear. He would become confused and disoriented as to what meds he had taken and what he was supposed to take. I was his ultimate lifeline. He called it the dark hole. He was scared of stepping off into it. He would wake up around 2:00 and say, "Renee, Renee, what do I take!". He would have no idea what he had taken, what to take or how often. He would be so disoriented. It was a nightly event. I started taking melatonin just so I would be able to go back to sleep after being awakened abruptly several times during the night.
The weekend after we got home my wonderful magnificent incredible sister in law Gloria was glorious! She arrived at my doorstep with my brother and my nephew along with the whole back end of their vehicle full of food. We have two refrigerators and I had difficulty finding room to pack it all in. She must have cooked for days preparing a feast for us. I can't tell you the relief I felt knowing that I would not have to cook for a very long time. Then the blessings started pouring in from friends bringing us meals from our favorite restaurants and they prepared love from their own kitchens. God has blessed us beyond measure.
In our kitchen on our pantry door, I started hanging all the cards. It soon became covered. Phil would pause and read them over and over. It gave him strength and encouragement to know that so many were praying for him daily. It's hard to imagine and know all the people and prayers and well wishes that have gone out for us. It brings tears to our eyes and warmth to our hearts daily and it encourages both of us. We talk frequently about being a testimony on the other side of all of this because we both believe that is truly what it is all about.
Unfortunately there is the day to day struggle. That is what any battle is about. The holidays were a struggle beyond my wildest dreams. Now I am a person that absolutely adores the holidays. I love to shop, I love to decorate, I love to cook, bake, wrap, party, you name it, I love everything about the holidays. I was having trouble breathing just thinking about the holidays this year. Thinking of going into the attic and pulling down all that stuff was about to give me a heart attack. It almost brought tears to my eyes every time I thought about it. I was OK buying things, I think I could shop through a hurricane but decorating and preparing this year was not an option for me. Phil wanted everyone over to the house for Thanksgiving. This was 2 1/2 weeks after his release from the hospital. I was exhausted and he had been back to the hospital from passing out from dizziness. Yes, one morning I thought I heard a thump but closed my eyes again and the next thing I know my daughter Tara is screaming, "where is Phil's walker, where is Phil's walker?". I couldn't imagine why she would need that since I always awoke before he did. I sprang out of bed and ran into the entry way and there was Phil, laying flat on the floor with the front door wide open. He had gone to take our little 4 lb. dog to the bathroom and passed out. Thank goodness our daughter was home so she could help him get up. Phil is not used to getting his bearings straight and then heading out. Like most of us, we get up and start walking. With all of these new drugs in his system, it made him light headed and he needed to take it easy, something he was not used to doing.
I started preparing for Thanksgiving three days before and I was working during all of this time also. It was to say the least, exhausting. Phil made it through the day on Thanksgiving but he paid for it all weekend. It almost cost him a trip back to the hospital. He was not able to withstand a lot of activity. The problem is that Phil loves to talk and Phil loves to be the center of attention and that's what makes him so lovable so I had to be the bad guy and monitor his activity, even his phone calls. I felt like I had a teenage son again. It was really hard. Getting him to rest when he needed it was very difficult. He fought sleep because he knew that sleep sometimes brought on that black hole that I spoke of earlier and he didn't want to wake up knowing that he might not be able to control his pain. We had to pass on every single party that we were invited to. We could not even go out for a 45 minute dinner. Phil's pain was so intense that sitting in a booth was not something that he could conceive. I was lonely and Phil was lost. It was a terrible feeling for both of us.
One of my co-workers quit the first of December and it became necessary for me to travel down to the Houston area to meet some of the customers that I would be inheriting. I was supposed to be gone for three days, two nights. I was on the phone talking to my co-workers and Phil knew I was talking to him and all of a sudden, I start getting texts from Phil in the other room and I hear him yelling at me. He was trying to tell me that I could not be gone more than one night! He followed it up with, "I mean it!". He was starting to panic. He could not be without me more than one night because he felt that he would not be able to dole out his meds or be able to control his pain or manage an emergency. I didn't know what to do because I had to do my job but I didn't want to leave Phil. He had become very dependent on me. Since I worked out of the house, I was very available to him. This was good but also bad in some ways because he learned to rely on me instead of himself so I became more than a caretaker. Drugs and pain can do strange things to you. I was constantly exhausted mentally and physically. Honestly, getting out of town for one night was good for me even though I was worried sick the whole time.
Now it was two weeks before Christmas. Still no tree, no decorations. I felt like a terrible home maker, wife, & mother. The guilt was setting in every time I drove down the street and saw all the beautiful lights. Still, I could not get my feet to climb those ladders in my garage and upstairs to my attics where all that stuff is packed away. UGH! OK, so I made my car drive to Michael's. They had ONE tree left that had lights already on it. It was the floor sample and it was half price. Problem was, it had colored lights on it. Should I? I have never allowed colored lights in my house ever! The tree came apart in 3 pieces and then the bottom. How simple compared to my 12 ft. million limb piece tree that takes me at least 2 hours to put together. Even though it is beautiful when finished, it is incredibly time consuming! I closed my eyes, asked the stock guy to take it to they front, bought another large Christmas floral arrangement for the entry, pulled my car up to the front of the store because it was raining buckets and the stock guy loaded it up for me and off I went. My youngest daughter Tara brought home a 2 ft. real tree that night because she didn't think I was going to ever get around to decorating, one without a stand so we had to rig that. She didn't like my tree either but with two trees now in our entry, it felt a little more like Christmas and now there was a place for the presents to be rather than just at the bottom of the stairs. When my oldest daughter Aubrie came in the door the first time her reaction was, "What is that? Colored lights?". Yep, my daughters had never seen them in my house before. Next year, it will either be on Craig's list or we will have a kitchen tree or maybe a back porch tree. We'll see.
Christmas came and went quietly. Thank goodness my sweet sister in law and brother had us over and we had a very nice time. Phil was very tired at the end of the day but he really enjoyed himself. He sat outside and enjoyed the ranch while my brother cooked steaks on the grill. Phil was getting better. He had taken himself off of the Flomax. That was the culprit of the dizziness. We wish we would have found that out a long time ago. That is a medicine that helps you urinate easily. You see, when you have all these meds in your system, you have to take other meds to help you with the side effects of all the other meds. It is just crazy! Phil's appetite had gotten a lot better. He was now able to eat more than just applesauce and oatmeal even though he asked for my "famous oatmeal" every morning. I think it was just his way of getting me to make his breakfast in the mornings. He was getting very sneaky!
The weekend after we got home my wonderful magnificent incredible sister in law Gloria was glorious! She arrived at my doorstep with my brother and my nephew along with the whole back end of their vehicle full of food. We have two refrigerators and I had difficulty finding room to pack it all in. She must have cooked for days preparing a feast for us. I can't tell you the relief I felt knowing that I would not have to cook for a very long time. Then the blessings started pouring in from friends bringing us meals from our favorite restaurants and they prepared love from their own kitchens. God has blessed us beyond measure.
In our kitchen on our pantry door, I started hanging all the cards. It soon became covered. Phil would pause and read them over and over. It gave him strength and encouragement to know that so many were praying for him daily. It's hard to imagine and know all the people and prayers and well wishes that have gone out for us. It brings tears to our eyes and warmth to our hearts daily and it encourages both of us. We talk frequently about being a testimony on the other side of all of this because we both believe that is truly what it is all about.
Unfortunately there is the day to day struggle. That is what any battle is about. The holidays were a struggle beyond my wildest dreams. Now I am a person that absolutely adores the holidays. I love to shop, I love to decorate, I love to cook, bake, wrap, party, you name it, I love everything about the holidays. I was having trouble breathing just thinking about the holidays this year. Thinking of going into the attic and pulling down all that stuff was about to give me a heart attack. It almost brought tears to my eyes every time I thought about it. I was OK buying things, I think I could shop through a hurricane but decorating and preparing this year was not an option for me. Phil wanted everyone over to the house for Thanksgiving. This was 2 1/2 weeks after his release from the hospital. I was exhausted and he had been back to the hospital from passing out from dizziness. Yes, one morning I thought I heard a thump but closed my eyes again and the next thing I know my daughter Tara is screaming, "where is Phil's walker, where is Phil's walker?". I couldn't imagine why she would need that since I always awoke before he did. I sprang out of bed and ran into the entry way and there was Phil, laying flat on the floor with the front door wide open. He had gone to take our little 4 lb. dog to the bathroom and passed out. Thank goodness our daughter was home so she could help him get up. Phil is not used to getting his bearings straight and then heading out. Like most of us, we get up and start walking. With all of these new drugs in his system, it made him light headed and he needed to take it easy, something he was not used to doing.
I started preparing for Thanksgiving three days before and I was working during all of this time also. It was to say the least, exhausting. Phil made it through the day on Thanksgiving but he paid for it all weekend. It almost cost him a trip back to the hospital. He was not able to withstand a lot of activity. The problem is that Phil loves to talk and Phil loves to be the center of attention and that's what makes him so lovable so I had to be the bad guy and monitor his activity, even his phone calls. I felt like I had a teenage son again. It was really hard. Getting him to rest when he needed it was very difficult. He fought sleep because he knew that sleep sometimes brought on that black hole that I spoke of earlier and he didn't want to wake up knowing that he might not be able to control his pain. We had to pass on every single party that we were invited to. We could not even go out for a 45 minute dinner. Phil's pain was so intense that sitting in a booth was not something that he could conceive. I was lonely and Phil was lost. It was a terrible feeling for both of us.
One of my co-workers quit the first of December and it became necessary for me to travel down to the Houston area to meet some of the customers that I would be inheriting. I was supposed to be gone for three days, two nights. I was on the phone talking to my co-workers and Phil knew I was talking to him and all of a sudden, I start getting texts from Phil in the other room and I hear him yelling at me. He was trying to tell me that I could not be gone more than one night! He followed it up with, "I mean it!". He was starting to panic. He could not be without me more than one night because he felt that he would not be able to dole out his meds or be able to control his pain or manage an emergency. I didn't know what to do because I had to do my job but I didn't want to leave Phil. He had become very dependent on me. Since I worked out of the house, I was very available to him. This was good but also bad in some ways because he learned to rely on me instead of himself so I became more than a caretaker. Drugs and pain can do strange things to you. I was constantly exhausted mentally and physically. Honestly, getting out of town for one night was good for me even though I was worried sick the whole time.
Now it was two weeks before Christmas. Still no tree, no decorations. I felt like a terrible home maker, wife, & mother. The guilt was setting in every time I drove down the street and saw all the beautiful lights. Still, I could not get my feet to climb those ladders in my garage and upstairs to my attics where all that stuff is packed away. UGH! OK, so I made my car drive to Michael's. They had ONE tree left that had lights already on it. It was the floor sample and it was half price. Problem was, it had colored lights on it. Should I? I have never allowed colored lights in my house ever! The tree came apart in 3 pieces and then the bottom. How simple compared to my 12 ft. million limb piece tree that takes me at least 2 hours to put together. Even though it is beautiful when finished, it is incredibly time consuming! I closed my eyes, asked the stock guy to take it to they front, bought another large Christmas floral arrangement for the entry, pulled my car up to the front of the store because it was raining buckets and the stock guy loaded it up for me and off I went. My youngest daughter Tara brought home a 2 ft. real tree that night because she didn't think I was going to ever get around to decorating, one without a stand so we had to rig that. She didn't like my tree either but with two trees now in our entry, it felt a little more like Christmas and now there was a place for the presents to be rather than just at the bottom of the stairs. When my oldest daughter Aubrie came in the door the first time her reaction was, "What is that? Colored lights?". Yep, my daughters had never seen them in my house before. Next year, it will either be on Craig's list or we will have a kitchen tree or maybe a back porch tree. We'll see.
Christmas came and went quietly. Thank goodness my sweet sister in law and brother had us over and we had a very nice time. Phil was very tired at the end of the day but he really enjoyed himself. He sat outside and enjoyed the ranch while my brother cooked steaks on the grill. Phil was getting better. He had taken himself off of the Flomax. That was the culprit of the dizziness. We wish we would have found that out a long time ago. That is a medicine that helps you urinate easily. You see, when you have all these meds in your system, you have to take other meds to help you with the side effects of all the other meds. It is just crazy! Phil's appetite had gotten a lot better. He was now able to eat more than just applesauce and oatmeal even though he asked for my "famous oatmeal" every morning. I think it was just his way of getting me to make his breakfast in the mornings. He was getting very sneaky!
Monday, February 6, 2012
Coming Home
The last few days in the hospital were loaded with anticipation. I would carry my iphone with me and wait for the calls from the nursing staff because Phil had directed them to call me about all of his medications because he didn't trust himself to make any decisions. I would run up to the hospital at a moments notice hoping to catch the doctor with his surprise visits. We never knew when they would come to give us an update. Will he come home today, this week, next week? It was always on our minds. I had tried to wheel hubby outside in a wheelchair just to test the waters the second week of his stay and also had a visit from our little dog Maggie Mae. Both proved to be too much for him too soon. The third week, we had another visit with Maggie Mae and two trips outside which felt like a trip to the beach for Phil even though it was just a view of the hospital parking lot with Phil wrapped up in blankets and he was still cold. Phil was able to stay outside for about 20 minutes and Dr. Davis actually found us on our outside adventure one evening and it was the beginning of the signing of our pink slip. We were both feeling a little more confident about handling the pain if and when it appeared at home without the help of the wonderful family of nurses that we had grown so close to. Leo was our favorite. Even when he wasn't assigned to Phil, he came to visit. His heart was big and he cared.
21 days after we had taken Phil to the emergency room Phil called me and said, "Come get me!". But, I hadn't hung the Welcome Home Banner yet and hadn't put the finishing touches on the house! My daughter Tara and I scrambled to find the perfect place to hang his banner and we tried across the stairs, across the front entrance, and finally ended up putting it on the fireplace. We were sweating by the time we found a place where the tape would hold knowing all the while Phil would be tapping his foot wondering where we were. I had taken a couple of hours the Sunday before to play in the dirt and plant some flowers and plants and decorate the entry way in preparation for Phil to come home and prepare for all of trick or treaters. I was excited but so nervous all at the same time. Phil was ready and he wanted me there now! I could feel him breathing down my neck and he was several miles away. I wanted his homecoming to be perfect and I felt like I was getting ready for our first date. I was almost laugh/crying.
Tara and I got to the hospital and Phil was dressed in his Kentucky gear, baseball cap and all. The last few days of his stay he had refused to wear his hospital gowns and had worn the pajama pants and t-shirts that I had bought for him. He had several visits from his buddies like Steve, Kevin and my brother Greg which helped lift his spirits so much. One of the techs helped us find a cart to load up his stuff. You would be surprised how much crap you accumulate even in a hospital in three weeks. The cart was overloaded and we all had our arms full and Phil was rolled out with lap full of stuff too. Me being the pack rat that I am, I was taking rubber gloves (I could use them to clean) and anything else that I thought might be functional that wasn't tied down that we had paid for. I know, that is so stupid right? Well some of those things came in mighty handy, can't say here what things did come in handy but they did!
The first night at home was a good night even though we had scrambled to get his medications filled and some were not available and getting out of the hospital at 7 p.m. made it almost impossible to get in touch with the doctor and get what he needed. Since pain was what we feared the most, Phil panicked at the thought of not having his meds so we didn't rest until we had the minimum of what we might need to make it through the night. The pharmacy didn't have the most important pill in the milligrams that we needed so they couldn't fill it and we had to go get another prescription. It was a mess but he needed his morphine. It was his lifeline. Phil was happy to be home but he had a lot of trouble getting in and out of bed. He was used to the hospital bed and had bars to hold on to. We had a thick mattress which restricted his movements and he had trouble even rolling out of bed so he used the bed frame and the nightstand for temporary leverage.
With his weakened state he was totally exhausted the next morning. That morning we lined up all of his meds and I took out the pill organizer that I had purchased at Walgreens with a.m. on one side and p.m. on the other and we took out the list that they gave us from the hospital. This is when I started realizing the huge responsibility of managing meds. I have to admit, I messed up a couple of times maybe three but cancer patients have a lot of medications to take. Some to remedy other medications. It's a vicious cycle and what's funny is when you go to a different doctor and they ask you to list the medications and you actually start rambling off big words like Dexamethazone, Thalidomide, etc. HA! I've got some of them down but here's the kicker, they've all got a couple of different names and then there's the generic name and then there's the chemo names. I won't bore you with all of them because it means nothing to you or maybe it does but we got an education and we learn something new all the time. Now I am not an organized person but you have to stay organized with meds or you are in danger so every Sunday, that's my morning job. I take the little red Starbucks bag that we store all the pill bottles in that are labeled and take them out one at a time and put it in either slot seven times and then keep out the bottles that need to be refilled that week.
After a couple of days, we got into a routine but the holidays were right around the corner and I had dread in my heart for the first time ever for both Thanksgiving and Christmas. I just didn't have it in me. I was driving home from a quick errand, they were always quick because I couldn't leave him for very long, and all of a sudden a wave of sadness, fear, anger, loss, confusion, loneliness, and basic devastation overcame me while I was driving. I had not cried. I pulled over about a block before our home and I just lost it. I let it go and wept until I was sobbing and was very vocal about it. It felt good. Sometimes you just need to let out a whopping, loud, crazy cry. I hope no one saw me. They would have thought I was nuts but I needed that moment of insanity to clear the path.
 |
| Maggie Mae going to see Daddy |
 |
| The decorated entry |
Tara and I got to the hospital and Phil was dressed in his Kentucky gear, baseball cap and all. The last few days of his stay he had refused to wear his hospital gowns and had worn the pajama pants and t-shirts that I had bought for him. He had several visits from his buddies like Steve, Kevin and my brother Greg which helped lift his spirits so much. One of the techs helped us find a cart to load up his stuff. You would be surprised how much crap you accumulate even in a hospital in three weeks. The cart was overloaded and we all had our arms full and Phil was rolled out with lap full of stuff too. Me being the pack rat that I am, I was taking rubber gloves (I could use them to clean) and anything else that I thought might be functional that wasn't tied down that we had paid for. I know, that is so stupid right? Well some of those things came in mighty handy, can't say here what things did come in handy but they did!
The first night at home was a good night even though we had scrambled to get his medications filled and some were not available and getting out of the hospital at 7 p.m. made it almost impossible to get in touch with the doctor and get what he needed. Since pain was what we feared the most, Phil panicked at the thought of not having his meds so we didn't rest until we had the minimum of what we might need to make it through the night. The pharmacy didn't have the most important pill in the milligrams that we needed so they couldn't fill it and we had to go get another prescription. It was a mess but he needed his morphine. It was his lifeline. Phil was happy to be home but he had a lot of trouble getting in and out of bed. He was used to the hospital bed and had bars to hold on to. We had a thick mattress which restricted his movements and he had trouble even rolling out of bed so he used the bed frame and the nightstand for temporary leverage.
With his weakened state he was totally exhausted the next morning. That morning we lined up all of his meds and I took out the pill organizer that I had purchased at Walgreens with a.m. on one side and p.m. on the other and we took out the list that they gave us from the hospital. This is when I started realizing the huge responsibility of managing meds. I have to admit, I messed up a couple of times maybe three but cancer patients have a lot of medications to take. Some to remedy other medications. It's a vicious cycle and what's funny is when you go to a different doctor and they ask you to list the medications and you actually start rambling off big words like Dexamethazone, Thalidomide, etc. HA! I've got some of them down but here's the kicker, they've all got a couple of different names and then there's the generic name and then there's the chemo names. I won't bore you with all of them because it means nothing to you or maybe it does but we got an education and we learn something new all the time. Now I am not an organized person but you have to stay organized with meds or you are in danger so every Sunday, that's my morning job. I take the little red Starbucks bag that we store all the pill bottles in that are labeled and take them out one at a time and put it in either slot seven times and then keep out the bottles that need to be refilled that week.
After a couple of days, we got into a routine but the holidays were right around the corner and I had dread in my heart for the first time ever for both Thanksgiving and Christmas. I just didn't have it in me. I was driving home from a quick errand, they were always quick because I couldn't leave him for very long, and all of a sudden a wave of sadness, fear, anger, loss, confusion, loneliness, and basic devastation overcame me while I was driving. I had not cried. I pulled over about a block before our home and I just lost it. I let it go and wept until I was sobbing and was very vocal about it. It felt good. Sometimes you just need to let out a whopping, loud, crazy cry. I hope no one saw me. They would have thought I was nuts but I needed that moment of insanity to clear the path.
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