I have a new page to record in my book of life. I can honestly say that the last day has been one of the toughest of my entire life.
But I'm going to cut quickly to the present time. About 2:30 this afternoon, the pain clinic called and said that the new prescriptions were ready. My husband immediately went to pick them up and take to the pharmacy. Relief was on it's way.
Here's what my new life consists of:
~ Twice a day, I will take 20 mg of Oxycontin.
~ EVERY 4 hours, no matter what time it is, I will take 5 mg of Oxycodone for breakthrough pain.
Here's what this translates into after taking just one pill of each:
~ I am able to walk, sit, lay and move without being in pain!!!!
But in reality, this is what is really happening:
~ I'm in a drugged induced state of mind. The prescriptions are altering the way my brain is receiving the pain. I walk as if my right leg isn't really attached to my body. All pain medicine makes me extremely itchy but that's what fingernails are for!
The bottom line is that for the first time in a long time, I feel that I can make it through the day. I can look forward to what the next hour may bring. I don't want to stay on heavy medication for any longer than I have to...but it appears that this is my absolute last option at this specific time. Late this afternoon, I was able to iron all of the tablecloths for the rehearsal dinner. I was able to take a shower without gripping the wall tiles crying out in pain.
Along with the prescriptions, an order for another MRI was included. I will call UVA on Monday so that they can arrange to get a picture of my spine along with the pancreas when I go on the 23rd.
I have the alarm set on my cell phone for every 4 hours. If this has to be my "new normal" for a little while, then I'll take it. This evening, for the first time in days, I was able to visualize myself being able to be physically present at my son's wedding! Thank you to EVERYONE for all your thoughts and prayers helping me make it to this moment in time. Thank you.....from the bottom of my heart!
Friday, July 13, 2012
Wednesday, July 11, 2012
5 + 4 + 3 EQUALS
Equals 12 if my math is correct. It also happens to be my pain level. In no way am I inflating that number in any way.
Today was normally a day that my husband was suppose to work; however because of the economy, his hours have been majorly impacted. He was to only work this afternoon. My pain clinic appointment was at 12:15 so I encouraged him to go to work...get the hours while he can because I knew I wasn't going to get an injection. It's too early to get another injection so I would be able to drive back home myself. Seeing how hard it was for me to even walk out to the car, he followed behind me to the clinic and then helped me get inside the hospital. It was extremely painful to take that short walk to the door, but with his help, I made it.
When the little receptionist at the clinic walked me back to the treatment room, she saw what a struggle it was to walk. She told me to lean on her. I laughed through my tears and told her that I would "squish her" if I leaned on her, but thank you so much for offering. After waiting for an hour, the doctor saw me first ahead of the other patients waiting there for injections. He said that more than likely other nerves have been irritated in addition to what already was inflamed. He said he was going to give me the 3rd injection today, knowing that it was my only resort of trying to get relief. He gave it to me in the traditional way that has helped in the past.
When I was taking a shower before going to the clinic, I honestly was at the lowest point of my entire life. The pain was beyond what I could handle. I told the doctor that if today was my son's wedding, there would be no way that I could have gone. Can you imagine missing my own son's wedding because of spinal stenosis? The doctor said that we just can't let that happen. He said to double up on the Dilaudid, stay on the steroid and if that didn't work, he would prescribe Oxycontin and Oxycondone....one of those being a "booster" or "breakthrough" for the pain. He also said that he may want another MRI to see what is going on with my spine. I'm scheduled for a MRI on July 23 at UVA for my pancreas so he said that he may call down to the surgeon and see if he can get a picture of my spine through that same MRI. I forget that I have pancreatic cancer. It certainly has taken the back seat to the nerve pain. How can that be? Ironic how this is all happening.
Getting an injection today meant that I now couldn't drive home. I called a friend who immediately dropped what she was doing to come to my rescue. She's been there many times for me in the past years. She was there for me again today. I certainly needed her strength, both emotionally and physically.
The pain slightly lessens after taking the double dose of Didaudid but only lasts for about a hour before it's right back up again. It certainly doesn't last the 4 hours between doses. I'm giving it until tomorrow but then will call for the stronger medication. I'm trying to be a patient person.You would think that so much pain medicine in my system would make me sleepy. No such luck.
I don't know what to ask for anymore. I don't know what to do. Since coming home from the pain clinic this afternoon, I can't even find a comfortable position in bed. I am trying hard to not cry so that I can get a mental grip over this pain. I've prayed as hard as I can pray.
Reading my blog has become nothing but a downer for everyone. I promise that when I can go back to just having pancreatic cancer, I will be so much more positive!
Today was normally a day that my husband was suppose to work; however because of the economy, his hours have been majorly impacted. He was to only work this afternoon. My pain clinic appointment was at 12:15 so I encouraged him to go to work...get the hours while he can because I knew I wasn't going to get an injection. It's too early to get another injection so I would be able to drive back home myself. Seeing how hard it was for me to even walk out to the car, he followed behind me to the clinic and then helped me get inside the hospital. It was extremely painful to take that short walk to the door, but with his help, I made it.
When the little receptionist at the clinic walked me back to the treatment room, she saw what a struggle it was to walk. She told me to lean on her. I laughed through my tears and told her that I would "squish her" if I leaned on her, but thank you so much for offering. After waiting for an hour, the doctor saw me first ahead of the other patients waiting there for injections. He said that more than likely other nerves have been irritated in addition to what already was inflamed. He said he was going to give me the 3rd injection today, knowing that it was my only resort of trying to get relief. He gave it to me in the traditional way that has helped in the past.
When I was taking a shower before going to the clinic, I honestly was at the lowest point of my entire life. The pain was beyond what I could handle. I told the doctor that if today was my son's wedding, there would be no way that I could have gone. Can you imagine missing my own son's wedding because of spinal stenosis? The doctor said that we just can't let that happen. He said to double up on the Dilaudid, stay on the steroid and if that didn't work, he would prescribe Oxycontin and Oxycondone....one of those being a "booster" or "breakthrough" for the pain. He also said that he may want another MRI to see what is going on with my spine. I'm scheduled for a MRI on July 23 at UVA for my pancreas so he said that he may call down to the surgeon and see if he can get a picture of my spine through that same MRI. I forget that I have pancreatic cancer. It certainly has taken the back seat to the nerve pain. How can that be? Ironic how this is all happening.
Getting an injection today meant that I now couldn't drive home. I called a friend who immediately dropped what she was doing to come to my rescue. She's been there many times for me in the past years. She was there for me again today. I certainly needed her strength, both emotionally and physically.
The pain slightly lessens after taking the double dose of Didaudid but only lasts for about a hour before it's right back up again. It certainly doesn't last the 4 hours between doses. I'm giving it until tomorrow but then will call for the stronger medication. I'm trying to be a patient person.You would think that so much pain medicine in my system would make me sleepy. No such luck.
I don't know what to ask for anymore. I don't know what to do. Since coming home from the pain clinic this afternoon, I can't even find a comfortable position in bed. I am trying hard to not cry so that I can get a mental grip over this pain. I've prayed as hard as I can pray.
Reading my blog has become nothing but a downer for everyone. I promise that when I can go back to just having pancreatic cancer, I will be so much more positive!
Tuesday, July 10, 2012
This is a T-E-S-T
My husband is working today. I needed to pick up my pain pill prescription at the surgical center this morning. I don't have enough pills to get through the day now that I'm taking them every 3-4 hours. Ordinarily, this would be no big deal, except for someone who is in extreme pain walking. Sometimes when I walk it actually works the pain out through the exercise. I'm up for the challenge.
Got dressed, which is a big deal in itself. It's hard to lift my right leg up to put it in my pant leg. Got in the car and tried to find a comfortable position. Went to the pain clinic and picked up the prescription. So far, so good. Painful but do-able. Dropped it off at the pharmacy and instead of going home and then back out again, I needed some things at Lowe's and Wal-Mart. While I was waiting for some paint to mix at Lowe's (need to touch up a few spots in my living room after taking a shelf down from the wall), CVS called me. The prescription wasn't complete because it didn't have the directions of how often to take. I asked the pharmacist if she could call the doctor for verbal directions. No Can Do...it's a narcotic and they can't call in. Okay, this is a test of how hard things can be for one person in pain. Got my paint, went to the car, and cried.
Get it together Sharon. You can do this. It's not the end of the world. It's just an added trip with more walking involved. You can do this.
After several trips into the house with some groceries, I'm grateful to be home. When I am back to being a whole person again, I will NEVER take life for granted. NEVER!
I'm being tested to see how far I can bend. I offer each painful step up to God. I can do this.
Got dressed, which is a big deal in itself. It's hard to lift my right leg up to put it in my pant leg. Got in the car and tried to find a comfortable position. Went to the pain clinic and picked up the prescription. So far, so good. Painful but do-able. Dropped it off at the pharmacy and instead of going home and then back out again, I needed some things at Lowe's and Wal-Mart. While I was waiting for some paint to mix at Lowe's (need to touch up a few spots in my living room after taking a shelf down from the wall), CVS called me. The prescription wasn't complete because it didn't have the directions of how often to take. I asked the pharmacist if she could call the doctor for verbal directions. No Can Do...it's a narcotic and they can't call in. Okay, this is a test of how hard things can be for one person in pain. Got my paint, went to the car, and cried.
Get it together Sharon. You can do this. It's not the end of the world. It's just an added trip with more walking involved. You can do this.
After several trips into the house with some groceries, I'm grateful to be home. When I am back to being a whole person again, I will NEVER take life for granted. NEVER!
I'm being tested to see how far I can bend. I offer each painful step up to God. I can do this.
Monday, July 9, 2012
Mama Called the Doctor and the Doctor Said...
The pain clinic returned my call first thing this morning after receiving my message on Saturday. They gave me an appointment to see the doctor on Wednesday. I asked if it would be for another injection, and like I suspected, it's too early to get another one. I told the secretary that I'm almost out of pain medicine. Although it doesn't take the pain away, it dulls it very slightly. I'll take any dulling I can get. She said she will talk to the doctor and get back to me.
The doctor just called me himself. He said he'll write the prescription for the pain medicine and I can pick it up tomorrow. Doctors can no longer call pain medicine directly into a pharmacy due to people abusing prescription drugs. I have enough to last me until then. I'm trying to keep the medicine in me every 4 hours and can up it to every 3 hours now that I know I'll have a refill. The doctor said that on Wednesday he'll explore an anti-inflammatory. I'm on a med-dose pack so I don't know if this is in addition to that or not??? He asked if the ER doctor ordered a MRI and I said no. I really hope that I don't have to have another one. One is in my future when I go to UVA on July 23rd. I don't want more tests....just PLEASE take this pain away from me. The ER doctor wanted me to make an appointment with an orthopedics. I don't want to go that route...for several reasons. I can't bear to start over with another doctor. All she will order is more tests and then physical therapy. I'll ask the pain clinic doctor his opinion on Wednesday if it's a necessary step. I just am so tired of doctor's visit. I just want to be a regular person who isn't complaining all the dang-on time.
I trust the pain clinic doctor so much so I will just wait until Wednesday to see what he can do to help me. I know he'll try everything he can do. I'm just not sure much can be done until the 3rd and final injection on July 18th. I'm so worried about running out of time before the wedding. I just want to enjoy this special occasion...that's all I want.
Before my diagnosis, we ordered tickets to the Addam's Family at the Kennedy Center. That's this coming weekend and I WILL GO even if I have to crawl. We usually drive to Vienna and then take Metro in. My husband said that if I'm not up to walking, he can drive all the way in. It's not his first choice because of D.C. driving, but it is definitely an option. We've been looking forward to this for months.
My soon-to-be daughter-in-laws Bridal Luncheon is the following Saturday. I have to feel better for that but luckily that will be after the next and final injection. I'm not sure anymore if that will help. It made things worse this time. Worse than when I went in. I didn't dream was possible.
The rehearsal dinner that we're hosting for 50+ people and the wedding is the weekend after that. All of our family and friends will be arriving on Thursday and Friday of that weekend. I want to enjoy each and every minute of the time we all have together. I want to be able to dance with my son for our special song. I want to cry tears of joy...not tears of pain. I want to sit like a lady, instead of someone who has to keep their leg out at the oddest angle trying to find that position that takes the cramp out of my hip. I want to wear the awesome heels (low but still heels) that go with my dress instead of bedroom slippers. I feel that I want so much lately but all I really want is to be normal again.
The doctor just called me himself. He said he'll write the prescription for the pain medicine and I can pick it up tomorrow. Doctors can no longer call pain medicine directly into a pharmacy due to people abusing prescription drugs. I have enough to last me until then. I'm trying to keep the medicine in me every 4 hours and can up it to every 3 hours now that I know I'll have a refill. The doctor said that on Wednesday he'll explore an anti-inflammatory. I'm on a med-dose pack so I don't know if this is in addition to that or not??? He asked if the ER doctor ordered a MRI and I said no. I really hope that I don't have to have another one. One is in my future when I go to UVA on July 23rd. I don't want more tests....just PLEASE take this pain away from me. The ER doctor wanted me to make an appointment with an orthopedics. I don't want to go that route...for several reasons. I can't bear to start over with another doctor. All she will order is more tests and then physical therapy. I'll ask the pain clinic doctor his opinion on Wednesday if it's a necessary step. I just am so tired of doctor's visit. I just want to be a regular person who isn't complaining all the dang-on time.
I trust the pain clinic doctor so much so I will just wait until Wednesday to see what he can do to help me. I know he'll try everything he can do. I'm just not sure much can be done until the 3rd and final injection on July 18th. I'm so worried about running out of time before the wedding. I just want to enjoy this special occasion...that's all I want.
Before my diagnosis, we ordered tickets to the Addam's Family at the Kennedy Center. That's this coming weekend and I WILL GO even if I have to crawl. We usually drive to Vienna and then take Metro in. My husband said that if I'm not up to walking, he can drive all the way in. It's not his first choice because of D.C. driving, but it is definitely an option. We've been looking forward to this for months.
My soon-to-be daughter-in-laws Bridal Luncheon is the following Saturday. I have to feel better for that but luckily that will be after the next and final injection. I'm not sure anymore if that will help. It made things worse this time. Worse than when I went in. I didn't dream was possible.
The rehearsal dinner that we're hosting for 50+ people and the wedding is the weekend after that. All of our family and friends will be arriving on Thursday and Friday of that weekend. I want to enjoy each and every minute of the time we all have together. I want to be able to dance with my son for our special song. I want to cry tears of joy...not tears of pain. I want to sit like a lady, instead of someone who has to keep their leg out at the oddest angle trying to find that position that takes the cramp out of my hip. I want to wear the awesome heels (low but still heels) that go with my dress instead of bedroom slippers. I feel that I want so much lately but all I really want is to be normal again.
Sunday, July 8, 2012
Hello ER
Yesterday evening, I called the hospital to put a page into the pain clinic doctor. The hospital wasn't able to do that because he wasn't in the hospital network to take calls when not on duty. I then called the pain clinic itself, knowing that they were closed until Monday morning. I left a message for them to hear first thing Monday morning.
When I woke up this morning, I couldn't take the pain any longer...just couldn't because I was up to a 9.5...so I went to the emergency room.
According to the ER doctor, the oral pain Dilaudid I've been taken at home is the strongest they have. Because that wasn't touching the pain at all, they gave me the same thing but in the form of a shot. He also gave me an extender. Boy did it make me feel loopy right away. Hold onto the side of the bed rails kind of loopy. I thought a piece of fuzz on the sheet was a bug crawling. I thought the paper on my bed was moving. My husband assured me neither of those things were happening. The ER doc called the pain clinic doc and he said to come see him the beginning of the week. He put me on a steriod med dose pack to start today. The ER doc also referred me to an orthopedics. Back home we went.
I went right to bed and slept sound for 3 hours. The pain woke me up...oh no, the shot has worn off and I'm right back to where I started this morning. I took the steroids, making believe dinner was breakfast. I'll take 2 after my "lunch" which will be a late snack, then 2 more before bed.
They concluded that another nerve in my spine must be inflamed from the new injection at the pain clinic. A dear friend told me that after I have the whipple surgery, it will be nothing compared to all the pain I've had with this degenerative spinal stenosis and sicata "stuff". It can't be worse, that's for sure!
Patience grasshopper...somehow all of this will work out.
By the way, the nurse I had at the ER was the same one I had when I went into the hospital thinking that I was going to have my gallbladder removed on April 23rd. She asked how everything turned out at UVA. After telling her of my diagnosis, she actually kissed me on the cheek.
When I woke up this morning, I couldn't take the pain any longer...just couldn't because I was up to a 9.5...so I went to the emergency room.
According to the ER doctor, the oral pain Dilaudid I've been taken at home is the strongest they have. Because that wasn't touching the pain at all, they gave me the same thing but in the form of a shot. He also gave me an extender. Boy did it make me feel loopy right away. Hold onto the side of the bed rails kind of loopy. I thought a piece of fuzz on the sheet was a bug crawling. I thought the paper on my bed was moving. My husband assured me neither of those things were happening. The ER doc called the pain clinic doc and he said to come see him the beginning of the week. He put me on a steriod med dose pack to start today. The ER doc also referred me to an orthopedics. Back home we went.
I went right to bed and slept sound for 3 hours. The pain woke me up...oh no, the shot has worn off and I'm right back to where I started this morning. I took the steroids, making believe dinner was breakfast. I'll take 2 after my "lunch" which will be a late snack, then 2 more before bed.
They concluded that another nerve in my spine must be inflamed from the new injection at the pain clinic. A dear friend told me that after I have the whipple surgery, it will be nothing compared to all the pain I've had with this degenerative spinal stenosis and sicata "stuff". It can't be worse, that's for sure!
Patience grasshopper...somehow all of this will work out.
By the way, the nurse I had at the ER was the same one I had when I went into the hospital thinking that I was going to have my gallbladder removed on April 23rd. She asked how everything turned out at UVA. After telling her of my diagnosis, she actually kissed me on the cheek.
Saturday, July 7, 2012
My Challenges
You would think that this journey I'm on is enough to deal with at one time. But for some unknown, yet I'd like to think calculated reason, the severe pain that I have in my right hip/leg is the focus of my daily struggles.
I went for the second injection on Thursday, so excited that this would make such a difference in my life. Historically in the past trips to the pain clinic, the 2nd injection takes my pain away permanently...or at least until I injure it again causing the spinal stenosis to become quite inflamed. As the pain clinic doctor put the needle into my spine, he did something he never has done in the past. He walked the needle up my spine after inserting it. After the injection, my husband confirmed that was exactly what he did as he watched the outline of the inserted needle go up my back.
I really, really hate to complain. In fact, as our Va Beach British golf partner would say, I'm so "bloody" tired of complaining. So I will just state the facts. This "bloody" 2nd injection has not given me a moment of relief. I'm still at a pain level of 8. I have had to resort to taking the pain medicine Dilaudid to help me make it through the nights. Even that doesn't take the pain away as you think it would. I don't WANT to take pain medicine. Imagine having a severe charley horse in you hip, with the pain running all the way down to your foot. You try to move your leg around to find that right spot to make the cramp go away. Yes, tears are streaming down your face as you move your hip around to find that comfort spot....but that relief doesn't come for quite some time. Now imagine at other times, when you don't have the severe charley horse feeling, that a battery charger is hooked up to your leg delivering constant electrical current down to your foot. Nerve pain is not easy...just not easy.
I must say...it's hard to concentrate on this "bloody" cancer journey because of my "bloody" hip/leg pain. Is that the reason this has happened???? I just don't know what to do. I can only get 3 injections. The next one is scheduled in 2 more weeks. The wedding is in 3 weeks. Major surgery will be after that. I just don't know what to do??? I am really, really tired of complaining!
On a happier note, my husband and I went on a date night Thursday evening. We went to see the 3D movie of The Amazing Spiderman. It was FANTASTIC! We had the best time! I must have said at least 50 times after the movie was over, "That was the best movie!" Finding the time to make memories is what life is all about.
I went for the second injection on Thursday, so excited that this would make such a difference in my life. Historically in the past trips to the pain clinic, the 2nd injection takes my pain away permanently...or at least until I injure it again causing the spinal stenosis to become quite inflamed. As the pain clinic doctor put the needle into my spine, he did something he never has done in the past. He walked the needle up my spine after inserting it. After the injection, my husband confirmed that was exactly what he did as he watched the outline of the inserted needle go up my back.
I really, really hate to complain. In fact, as our Va Beach British golf partner would say, I'm so "bloody" tired of complaining. So I will just state the facts. This "bloody" 2nd injection has not given me a moment of relief. I'm still at a pain level of 8. I have had to resort to taking the pain medicine Dilaudid to help me make it through the nights. Even that doesn't take the pain away as you think it would. I don't WANT to take pain medicine. Imagine having a severe charley horse in you hip, with the pain running all the way down to your foot. You try to move your leg around to find that right spot to make the cramp go away. Yes, tears are streaming down your face as you move your hip around to find that comfort spot....but that relief doesn't come for quite some time. Now imagine at other times, when you don't have the severe charley horse feeling, that a battery charger is hooked up to your leg delivering constant electrical current down to your foot. Nerve pain is not easy...just not easy.
I must say...it's hard to concentrate on this "bloody" cancer journey because of my "bloody" hip/leg pain. Is that the reason this has happened???? I just don't know what to do. I can only get 3 injections. The next one is scheduled in 2 more weeks. The wedding is in 3 weeks. Major surgery will be after that. I just don't know what to do??? I am really, really tired of complaining!
On a happier note, my husband and I went on a date night Thursday evening. We went to see the 3D movie of The Amazing Spiderman. It was FANTASTIC! We had the best time! I must have said at least 50 times after the movie was over, "That was the best movie!" Finding the time to make memories is what life is all about.
Thursday, July 5, 2012
Injection #2...cha--ching
I'm looking forward to more relief now that I've had injection #2. The last injection will be July 18 ... which should make me fit as a fiddle for the wedding (and hopefully long after that)! My pain clinic doctor said that it's not unusual for me to have been back up to a pain level 8 at this point. He said that the first injection is kind of like a prep for the next 2 injections. He did something a little different this time. After inserting the long needle, he actually worked it up my spine. Although I felt it, my husband watched him feel the needle's location as he went up the spine and then pushed the medicine to the right. I'm so grateful for the relief that it's going to give me that I really don't mind the pain of the actual injection.
We had a great 4th of July. All of the kids came over for a cookout. We grilled hot dogs, hamburgers, chicken and ribs (which were the best ribs we've ever made). I made macaroni, tomato/mozzarello and potato salads, coleslaw, baked beans, cucumber/onions and a fruit trifle. It felt great making all the food for the dinner. After we ate, the girls and I enjoyed the pool while my 3 boys bonded in their man cave. It was a great afternoon having my family here! We enjoyed fireworks last evening while another storm shot lighting across the sky and into the fireworks.
I woke up in the middle of the night from hip pain. I started thinking about what the results of the MRI will be and when surgery will be scheduled. I hate the unknown...so needless to say I shed some tears into my pillow, trying not to wake my husband.
It is what it is ....and will be what it will be.
We had a great 4th of July. All of the kids came over for a cookout. We grilled hot dogs, hamburgers, chicken and ribs (which were the best ribs we've ever made). I made macaroni, tomato/mozzarello and potato salads, coleslaw, baked beans, cucumber/onions and a fruit trifle. It felt great making all the food for the dinner. After we ate, the girls and I enjoyed the pool while my 3 boys bonded in their man cave. It was a great afternoon having my family here! We enjoyed fireworks last evening while another storm shot lighting across the sky and into the fireworks.
I woke up in the middle of the night from hip pain. I started thinking about what the results of the MRI will be and when surgery will be scheduled. I hate the unknown...so needless to say I shed some tears into my pillow, trying not to wake my husband.
It is what it is ....and will be what it will be.
Monday, July 2, 2012
49 Hours
What have I been doing for the last 49 hours? Hmmm, all of it involved NO ELECTRICITY! We made it through the storm Friday night, although we did go down in the basement for a couple of hours due to the extremely high winds. Woke up Saturday morning and then....zapppp, the electricity went off at 8:00 a.m. on one of the hottest weekends of the summer.
Saturday we tried to stay cool by staying down in the rec room. Saturday night, Butch slept in the basement and I slept outside on the screened in porch with the dogs and cat. Sunday morning, our oldest son and his friend came to our rescue with a generator. We plugged the refrigerator in the kitchen, the large freezer in the basement, and a fan in the rec room into the generator. It was still hot but at least the fan provided some hot circulating air.
Yesterday I had to throw away some food that was in the refrigerator for over 24 hours without being cooled, one being my homemade pasta salad :( It had feta cheese in it and I just didn't want to take any chances getting sick. Luckily my pasta sauce was in the freezer so I felt safer with that.
My dogs are 13 and 16 years old. They don't take the heat very well. Casey got very sick from the heat...poor baby. They follow me around everywhere so I tried to stay in one place for them to try and rest. Let's just say, when you stay in one room for a very long time, you discover things about that room. You make decisions such as needing new curtains...the old ones came down first thing this morning. You make sure each picture frame on the shelf is evenly spaced. You decide that you really don't like that candle holder on the mantle...off it comes.
I had a hard day yesterday...lots of periods of crying. My husband was at work and I was here with the dogs. I was worried about how they were feeling in the hot house. No electricity made me think about a period of time in my childhood that was rough. I cried often, particularly when my boys and husband called to check on how I was doing.
The boys and their girls made things easier. My husband took a shower at one of the boy's houses before work. I had offers for showers and to stay with the dogs at the kids houses. I got smoothies and sweet treats to make me feel better! Our containers were refilled so that we had water for the dogs and for washing our hands, etc. I was well taken care of!
This morning, at 9:00, the electricity came back on! I am so grateful! I have been a ball of fire since then. I have been cleaning like a mad woman. Something about not having lights makes you feel everything is dirty, including me! I am cleaning really good, getting hot and sweaty, before jumping into a hot shower!
Saturday we tried to stay cool by staying down in the rec room. Saturday night, Butch slept in the basement and I slept outside on the screened in porch with the dogs and cat. Sunday morning, our oldest son and his friend came to our rescue with a generator. We plugged the refrigerator in the kitchen, the large freezer in the basement, and a fan in the rec room into the generator. It was still hot but at least the fan provided some hot circulating air.
Yesterday I had to throw away some food that was in the refrigerator for over 24 hours without being cooled, one being my homemade pasta salad :( It had feta cheese in it and I just didn't want to take any chances getting sick. Luckily my pasta sauce was in the freezer so I felt safer with that.
My dogs are 13 and 16 years old. They don't take the heat very well. Casey got very sick from the heat...poor baby. They follow me around everywhere so I tried to stay in one place for them to try and rest. Let's just say, when you stay in one room for a very long time, you discover things about that room. You make decisions such as needing new curtains...the old ones came down first thing this morning. You make sure each picture frame on the shelf is evenly spaced. You decide that you really don't like that candle holder on the mantle...off it comes.
I had a hard day yesterday...lots of periods of crying. My husband was at work and I was here with the dogs. I was worried about how they were feeling in the hot house. No electricity made me think about a period of time in my childhood that was rough. I cried often, particularly when my boys and husband called to check on how I was doing.
The boys and their girls made things easier. My husband took a shower at one of the boy's houses before work. I had offers for showers and to stay with the dogs at the kids houses. I got smoothies and sweet treats to make me feel better! Our containers were refilled so that we had water for the dogs and for washing our hands, etc. I was well taken care of!
This morning, at 9:00, the electricity came back on! I am so grateful! I have been a ball of fire since then. I have been cleaning like a mad woman. Something about not having lights makes you feel everything is dirty, including me! I am cleaning really good, getting hot and sweaty, before jumping into a hot shower!
Friday, June 29, 2012
If You Give a Mouse a Cookie...
If you give a mouse a cookie, then he'll want a glass of milk.
If you give Sharon fresh oregano from her herb garden, she'll want to make a pot of spaghetti sauce. It felt so good to come home yesterday from a day trip and put on a pot of wonderful smelling sauce simmering on the stove. Not only did it taste delicious, I was even able to share with my son and his girlfriend. It felt good to give to others as others have so generously given to us.
Today I made a great big pasta salad, loaded with fresh vegetables....asparagus, cucumbers, spring onions, celery, tomatoes, green peppers and cilantro. It felt good to begin a project and end with a delicious treat.
Yesterday, my husband and I traveled to Berkley Springs for a day out. My hip/leg hurt immensely as we were walking through the shops. I just couldn't find relief. Luckily there weren't many things to see in the town because I was losing steam as we ended our day. I'm anxious for my second spine injection this Thursday. Historically with my other cycles at the pain clinic, the second injection took all the pain away. I'm looking forward to that hopefully being the case next week. I'll be glad to get a good night sleep without the pain waking me up.
If you give a mouse a glass of milk, he'll need a straw.
If you give Sharon fresh oregano from her herb garden, she'll want to make a pot of spaghetti sauce. It felt so good to come home yesterday from a day trip and put on a pot of wonderful smelling sauce simmering on the stove. Not only did it taste delicious, I was even able to share with my son and his girlfriend. It felt good to give to others as others have so generously given to us.
Today I made a great big pasta salad, loaded with fresh vegetables....asparagus, cucumbers, spring onions, celery, tomatoes, green peppers and cilantro. It felt good to begin a project and end with a delicious treat.
Yesterday, my husband and I traveled to Berkley Springs for a day out. My hip/leg hurt immensely as we were walking through the shops. I just couldn't find relief. Luckily there weren't many things to see in the town because I was losing steam as we ended our day. I'm anxious for my second spine injection this Thursday. Historically with my other cycles at the pain clinic, the second injection took all the pain away. I'm looking forward to that hopefully being the case next week. I'll be glad to get a good night sleep without the pain waking me up.
If you give a mouse a glass of milk, he'll need a straw.
Thursday, June 28, 2012
My Energy is Coming Back!
You just aren't going to believe this...
Not only did I do housecleaning piddling yesterday, I worked in my herb garden (picked fresh mint and oregano) AND (sit down for this one), I defrosted the large freezer downstairs! You read that right, I actually did a big project AND I didn't take an afternoon nap! I believe it's the first day since being in the hospital that I didn't sleep during the day.
The fresh mint is ready to go with a great big pitcher of spiced ice tea. Picking the oregano makes me want to put on a pot of homemade spaghetti sauce. I believe that will be on the agenda today after slipping to the store and getting the ingredients for the sauce.
It feels so good to be doing things that make me feel useful!
Not only did I do housecleaning piddling yesterday, I worked in my herb garden (picked fresh mint and oregano) AND (sit down for this one), I defrosted the large freezer downstairs! You read that right, I actually did a big project AND I didn't take an afternoon nap! I believe it's the first day since being in the hospital that I didn't sleep during the day.
The fresh mint is ready to go with a great big pitcher of spiced ice tea. Picking the oregano makes me want to put on a pot of homemade spaghetti sauce. I believe that will be on the agenda today after slipping to the store and getting the ingredients for the sauce.
It feels so good to be doing things that make me feel useful!
Wednesday, June 27, 2012
Plans for the Day
My plans for the day are simple...
I am going to do some house cleaning piddling first, followed by finding some new recipes to make now that I am back in the land of the living. I'm going to work a little on the wedding rehearsal decorations, which I am sure will be followed by an afternoon nap. I really need these naps so I might as well plan it into my day.
After the hottest part of the day is over, I want to read a magazine this evening while I float on a raft in the pool and then do some water aerobics.
I hope you enjoy your day too!
I am going to do some house cleaning piddling first, followed by finding some new recipes to make now that I am back in the land of the living. I'm going to work a little on the wedding rehearsal decorations, which I am sure will be followed by an afternoon nap. I really need these naps so I might as well plan it into my day.
After the hottest part of the day is over, I want to read a magazine this evening while I float on a raft in the pool and then do some water aerobics.
I hope you enjoy your day too!
Tuesday, June 26, 2012
First REAL Day of Summer Vacation
It's such a glorious day! The weather is such a gift to me on this first real day of my summer vacation. There is nothing that I love more than a breeze or the wind blowing. It gives me such energy ... puts such a smile on my face.
I worked out in my flower beds this morning for about an hour. Came in and decided that it was way too pretty of a day to have the windows closed. I've piddled all morning and have loved each minute of it! My husband called from work at the exact time that I would have had to leave for radiation if it was any other day...but not today. After all, I am a graduate of 6 weeks of radiation!
It's such a glorious day. I might even put earrings on!!!!!
I worked out in my flower beds this morning for about an hour. Came in and decided that it was way too pretty of a day to have the windows closed. I've piddled all morning and have loved each minute of it! My husband called from work at the exact time that I would have had to leave for radiation if it was any other day...but not today. After all, I am a graduate of 6 weeks of radiation!
It's such a glorious day. I might even put earrings on!!!!!
Monday, June 25, 2012
Time for Celebration!
I am officially finished with phase 1 and 2 of the 4 phases of my treatment!!!!!!!!!!!
Phase #1: Chemo- I was taken off one week earlier of the 6 week treatment because of the side effects that I was...am experiencing. My feet are so much better. Not raw anymore! Now I'm experiencing fluid?? My eyelids look like someone put a syringe of fluid in each eyelid. My right eye, on top of the fluid, has a stye on the bottom eyelid. Makes me feel even uglier than I already do.
Phase #2: Radiation- today was my last day! I was able to walk out of the office today and NOT say, "See you tomorrow" as I've said for the last 6 weeks. Such a good feeling. I made the radiation team a plate of cookies. Okay, I really didn't "make" the cookies but I did drive to Wal-Mart myself to buy the pre-made dough, I did cut the dough with a knife and put it on a cookie sheet, and I took them out of the oven when the timer went off! These days, I call that making something from scratch!! I even got a diploma today!
Phase #3: Surgery- I go to UVA on July 23 for the MRI and meet with the surgeon on July 24. Hopefully, he will tell me that I can have the surgery the next week (that's my timeline...not sure what his timeline is).
Phase #4: Chemo- After my surgery, my oncologist is leaning very strongly to more chemo. This will be the IV kind that I have to go to the treatment room for at the oncologists. He will wait until the results of the surgery but he expressed his concern for killing any "stray" cells that may be floating around after the surgery. If that is what he wants to do, I support that decision. I want them to be wiped out from my system 100% so if that is what I need to do, I'll do it!
The phase after all of this will be to get back to a normal life, back to work, back to feeling like I can put this behind me and live again. I look forward to the day that I can say a miracle happened and that I am cancer free. I pray that I can say those words, pray that it will become a reality. Right now, though, it's just a dream.
I'd like to thank all the special people in my life who have sent me emails and texts congratulating me on this part of my finished journey. On top of that, I had a wonderful surprise when I finished my treatment today. Two of my dearest friends were there to C-e-l-e-b-r-a-t-e with me! It meant the world to have them there. One of my friends little boy drew this precious picture for me...it's a keepsake!
Phase #1: Chemo- I was taken off one week earlier of the 6 week treatment because of the side effects that I was...am experiencing. My feet are so much better. Not raw anymore! Now I'm experiencing fluid?? My eyelids look like someone put a syringe of fluid in each eyelid. My right eye, on top of the fluid, has a stye on the bottom eyelid. Makes me feel even uglier than I already do.
Phase #2: Radiation- today was my last day! I was able to walk out of the office today and NOT say, "See you tomorrow" as I've said for the last 6 weeks. Such a good feeling. I made the radiation team a plate of cookies. Okay, I really didn't "make" the cookies but I did drive to Wal-Mart myself to buy the pre-made dough, I did cut the dough with a knife and put it on a cookie sheet, and I took them out of the oven when the timer went off! These days, I call that making something from scratch!! I even got a diploma today!
Phase #3: Surgery- I go to UVA on July 23 for the MRI and meet with the surgeon on July 24. Hopefully, he will tell me that I can have the surgery the next week (that's my timeline...not sure what his timeline is).
Phase #4: Chemo- After my surgery, my oncologist is leaning very strongly to more chemo. This will be the IV kind that I have to go to the treatment room for at the oncologists. He will wait until the results of the surgery but he expressed his concern for killing any "stray" cells that may be floating around after the surgery. If that is what he wants to do, I support that decision. I want them to be wiped out from my system 100% so if that is what I need to do, I'll do it!
The phase after all of this will be to get back to a normal life, back to work, back to feeling like I can put this behind me and live again. I look forward to the day that I can say a miracle happened and that I am cancer free. I pray that I can say those words, pray that it will become a reality. Right now, though, it's just a dream.
I'd like to thank all the special people in my life who have sent me emails and texts congratulating me on this part of my finished journey. On top of that, I had a wonderful surprise when I finished my treatment today. Two of my dearest friends were there to C-e-l-e-b-r-a-t-e with me! It meant the world to have them there. One of my friends little boy drew this precious picture for me...it's a keepsake!
Friday, June 22, 2012
Prayer Request
I have been so very fortunate to have hundreds and hundreds of people praying for me. I have a BIG request. I have a friend, another SLP that I work with, another person touched by cancer, that needs as MANY prayers as the universe can hold.
Please pray for Rita. Ask EVERYONE that you know to please pray for Rita. When you say your prayers for me, please add, "For Sharon and her friend Rita".
Please pray for Rita. Ask EVERYONE that you know to please pray for Rita. When you say your prayers for me, please add, "For Sharon and her friend Rita".
Thursday, June 21, 2012
I Don't Care How Long the Needle Is!
Today was a great day! The kindest doctor in the world...my pain clinic doc who is just the coolest...knew just how much in pain I was after looking at my x-rays. His office called yesterday evening and said that he will be on vacation next week and they don't have the pain clinic on Friday's...but that he will squeeze me in on Thursday right after my radiation for ... not a consult ... but an actual injection!!!! I was elated. My pain was going to have an end in sight. This has consumed my life and yes, is much worse than the chemo and radiation treatments that I have had to have. It's a constant pain that runs from my right hip to my foot. I vowed to myself that I WILL NEVER LIFT OR MOVE ANYTHING HEAVY IN MY ENTIRE LIFETIME in order to eliminate this from happening again.
So right after radiation...with only 2 more left, we went to the pain clinic at home. I've been through 2 cycles of 2 injections each over the years. You can get 3 which I usually never need because I feel back to normal after two. The doctor said that the reason he wanted the x-rays was to make sure that the cancer had not spread to my bones, which sometimes happens with pancreatic cancer. He just wanted this reassurance before seeing me. He said that it hadn't, thank you God, and that the spinal stenosis was "extensive in L4 and L5". I would have been concerned had I not actually lifted things to cause this pain. Did I mention that I will never do that again in my entire life? I was so very, very grateful to get the 6 inch needle in my spine today. I was so grateful that I had a doctor who worked me into an already full schedule. I am so grateful that I am already feeling relief. I go in 2 weeks for the 2nd injection and at this time, I really think that I am going to go for the 3rd injection for the first time so that I know that the inflammation is reduced. The doctor said that my spinal stenosis is going to cause me to have to have this procedure over and over and over again but that I'm not a candidate for anything else to help it. Hmmm, I'm going to get through this episode and if I vow to NEVER lift or move anything ever again in my lifetime, then maybe this will be the last time. It's something I'm not going to worry about now. If I can beat cancer, then I can handle getting injections in my spine for the rest of my life.
So right after radiation...with only 2 more left, we went to the pain clinic at home. I've been through 2 cycles of 2 injections each over the years. You can get 3 which I usually never need because I feel back to normal after two. The doctor said that the reason he wanted the x-rays was to make sure that the cancer had not spread to my bones, which sometimes happens with pancreatic cancer. He just wanted this reassurance before seeing me. He said that it hadn't, thank you God, and that the spinal stenosis was "extensive in L4 and L5". I would have been concerned had I not actually lifted things to cause this pain. Did I mention that I will never do that again in my entire life? I was so very, very grateful to get the 6 inch needle in my spine today. I was so grateful that I had a doctor who worked me into an already full schedule. I am so grateful that I am already feeling relief. I go in 2 weeks for the 2nd injection and at this time, I really think that I am going to go for the 3rd injection for the first time so that I know that the inflammation is reduced. The doctor said that my spinal stenosis is going to cause me to have to have this procedure over and over and over again but that I'm not a candidate for anything else to help it. Hmmm, I'm going to get through this episode and if I vow to NEVER lift or move anything ever again in my lifetime, then maybe this will be the last time. It's something I'm not going to worry about now. If I can beat cancer, then I can handle getting injections in my spine for the rest of my life.
Tuesday, June 19, 2012
Blog Titles
I have enjoyed picking the blog titles for my posts. This one will have MANY titles:
*So How Does It Taste?
*What Else Do You Do Besides Sleep?
*Social Security
*Oh Thank You, Thank You So Much!
*The Count Down is ON!
So how does it taste? I'm not sure. A lovely new side effect has developed. My feet and lips feel numb and my sense of taste has diminished. I know these are short lived now that I'm off chemo. It's all part of the process and I'm fine with that.
What else do you do besides sleep? Not much. I try not to go back to bed after I'm up so instead, I've made the couch my "place to pretend to read". I don't even have the energy to read. My eyelids take over and I sleep soundly for a couple of hours. Then I wake up, eat because I'm famished and that's what causes the nausea, then fall back to sleep. My body is telling me to rest and that's what I'm doing.
Social Security...this could be a 20 page blog in itself but I'll condense because it's 4:30 in the morning. A couple of weeks ago, I received a letter from my long term disability company. That policy hasn't even kicked into mode yet, however they wanted me to apply for Social Security Disability Income. This has been the root of what has been bothering me and has also been the core of what has made me make decisions such as driving myself to radiation. I am only TEMPORARILY disabled, yet they want me to apply for something that is permanent. I did that for my mom after receiving a letter from her oncologist giving her life span in writing. I keep moving the forms, that they are requiring me to send in, from pile to pile. I didn't want to deal with it. Even though the forms kept moving from place to place, the idea settled in my mind....and it bothered me more than you can imagine. SS disability is a permanent thing. You are telling me that I am going to stay disabled. I don't want to do this...please don't make me. With all of these feelings, I took back control of my life. Last Friday, I got a message from the law group that represented the long term disability company. They were calling to assist me in filling out the SS claim. I decided to pull a Scarlet O'Hara and deal with it on Monday. First thing this morning, I called and had to leave a message. The phone tag game was on. Long story short, I spoke with the lawyer this afternoon. After explaining to her that I don't even work during the summer; long term hasn't even kicked in, yet they were trying to reduce their responsibility already; I don't plan on being out of work for any longer than I have to be; this is stage 1 and not a death sentence; and did I mention that I plan on going back to work as soon as I can? The lawyer said that the two reasons to apply for SSDI is if you have been out of work for 1 year already or if you expect to be kept out of work for 1 year. Neither of these apply to me. The lawyer really listened to me and heard me. She agreed that this claim was a bit premature. I promised her that should I not get the results from surgery that are expected, I will contact her for her assistance in this next step. End of phone call and very, very deep sigh from inside my heart.
Oh, thank you, thank you so much! I was finally able to get the lumbar x-ray this evening for my sciatica. The pain is constant and quite severe. I finished the round of steroids without many results. I know that this will not go away without an injection from the pain clinic into my spine. I've been down this path several times already and after 3 weeks, with the pain still a level 6-7, I know that it will not resolve itself without the next step. I have spinal stenosis and the inflammation is pressing on nerves causing constant pain from my hip down my leg to my foot. Yes, this is from moving the furniture on my screened in porch. Yes, this is the result of thinking that I can still do these things. Yes, this pain is all because I was stupid. I hope to hear from the pain clinic within the next day or two and then go in for a consult, followed by the injection. It's going to be so wonderful not being in pain. My life will be so happy!!!
The count down is on. I have T, W, Th, F, M left for radiation treatments. Help me count...1, 2, 3, 4, 5 more treatments. In a little over 6 hours, I will be able to say that I have 4 more treatments! I'm so excited.
*So How Does It Taste?
*What Else Do You Do Besides Sleep?
*Social Security
*Oh Thank You, Thank You So Much!
*The Count Down is ON!
So how does it taste? I'm not sure. A lovely new side effect has developed. My feet and lips feel numb and my sense of taste has diminished. I know these are short lived now that I'm off chemo. It's all part of the process and I'm fine with that.
What else do you do besides sleep? Not much. I try not to go back to bed after I'm up so instead, I've made the couch my "place to pretend to read". I don't even have the energy to read. My eyelids take over and I sleep soundly for a couple of hours. Then I wake up, eat because I'm famished and that's what causes the nausea, then fall back to sleep. My body is telling me to rest and that's what I'm doing.
Social Security...this could be a 20 page blog in itself but I'll condense because it's 4:30 in the morning. A couple of weeks ago, I received a letter from my long term disability company. That policy hasn't even kicked into mode yet, however they wanted me to apply for Social Security Disability Income. This has been the root of what has been bothering me and has also been the core of what has made me make decisions such as driving myself to radiation. I am only TEMPORARILY disabled, yet they want me to apply for something that is permanent. I did that for my mom after receiving a letter from her oncologist giving her life span in writing. I keep moving the forms, that they are requiring me to send in, from pile to pile. I didn't want to deal with it. Even though the forms kept moving from place to place, the idea settled in my mind....and it bothered me more than you can imagine. SS disability is a permanent thing. You are telling me that I am going to stay disabled. I don't want to do this...please don't make me. With all of these feelings, I took back control of my life. Last Friday, I got a message from the law group that represented the long term disability company. They were calling to assist me in filling out the SS claim. I decided to pull a Scarlet O'Hara and deal with it on Monday. First thing this morning, I called and had to leave a message. The phone tag game was on. Long story short, I spoke with the lawyer this afternoon. After explaining to her that I don't even work during the summer; long term hasn't even kicked in, yet they were trying to reduce their responsibility already; I don't plan on being out of work for any longer than I have to be; this is stage 1 and not a death sentence; and did I mention that I plan on going back to work as soon as I can? The lawyer said that the two reasons to apply for SSDI is if you have been out of work for 1 year already or if you expect to be kept out of work for 1 year. Neither of these apply to me. The lawyer really listened to me and heard me. She agreed that this claim was a bit premature. I promised her that should I not get the results from surgery that are expected, I will contact her for her assistance in this next step. End of phone call and very, very deep sigh from inside my heart.
Oh, thank you, thank you so much! I was finally able to get the lumbar x-ray this evening for my sciatica. The pain is constant and quite severe. I finished the round of steroids without many results. I know that this will not go away without an injection from the pain clinic into my spine. I've been down this path several times already and after 3 weeks, with the pain still a level 6-7, I know that it will not resolve itself without the next step. I have spinal stenosis and the inflammation is pressing on nerves causing constant pain from my hip down my leg to my foot. Yes, this is from moving the furniture on my screened in porch. Yes, this is the result of thinking that I can still do these things. Yes, this pain is all because I was stupid. I hope to hear from the pain clinic within the next day or two and then go in for a consult, followed by the injection. It's going to be so wonderful not being in pain. My life will be so happy!!!
The count down is on. I have T, W, Th, F, M left for radiation treatments. Help me count...1, 2, 3, 4, 5 more treatments. In a little over 6 hours, I will be able to say that I have 4 more treatments! I'm so excited.
Saturday, June 16, 2012
Out Of My Hands
I remember distinctly when the oncologist was telling us about the side effects of the chemo drug, he mentioned several times the hand and foot syndrome. I thought I better be safe than sorry so yesterday morning before radiation, I called the oncologist and left a message with his nurse about what is happening to my feet and hands. The nurse called me back and told me that she wanted to see me after my radiation treatment.
When the nurse saw my feet and hands, she said to immediately STOP taking the chemo. She said that my body is telling me that it's had enough and that it can't handle any more. She said that people try to hide this side effect from them but she said I did the right thing by calling her. The nurse said that if I didn't come off the chemo that the side effects would only get worse, with additionally getting blisters in my mouth. She said that I'll probably have more pain in my feet for the next week but then it should get better.
I told her that I feel that deserting the chemo will change the end result. She said not to feel like that at all. I will still get the next 6 days of radiation but that my body is saying it just can't take any more of the drug.
So, part 1 of my 2 part treatment is over. I am grateful that my body waited 5 of the 6 weeks to develop this side effect. It could have happened after just a few days...where would I have been then with options?
When the nurse saw my feet and hands, she said to immediately STOP taking the chemo. She said that my body is telling me that it's had enough and that it can't handle any more. She said that people try to hide this side effect from them but she said I did the right thing by calling her. The nurse said that if I didn't come off the chemo that the side effects would only get worse, with additionally getting blisters in my mouth. She said that I'll probably have more pain in my feet for the next week but then it should get better.
I told her that I feel that deserting the chemo will change the end result. She said not to feel like that at all. I will still get the next 6 days of radiation but that my body is saying it just can't take any more of the drug.
So, part 1 of my 2 part treatment is over. I am grateful that my body waited 5 of the 6 weeks to develop this side effect. It could have happened after just a few days...where would I have been then with options?
Thursday, June 14, 2012
There Has to be Something
There has to be something that doesn't hurt....let me think. I haven't been feeling the best. It's definitely to be expected though with what is going in my body.
--The fatigue is the most draining but that's what good afternoon naps are for.
--The nausea is to be expected and could be a lot worse. I usually find that I get more nausea when I'm hungry. Eating a piece of toasted bagel or a half of a peanut butter sandwich makes this feel a little better.
--The stomach spasms are definitely less severe than they were in the beginning. I take this as a good sign that the tumor is shrinking and not causing as much havoc on my pancreas????
--My skin is changing...spots coming here and there. Thank goodness for Cover Girl Makeup!
--My right hip all the way down to my foot still hurts like heck but that will teach me to NOT move heavy things. I went to the internist and got a steroid to reduce the inflammation in my sciatica. It's better but definitely NOT gone. I have a couple more days of the steroid so hopefully magic will happen soon.
--By far the most interesting side effect from the treatment is what is happening to my feet. The bottom of both feet have the feeling of being raw. Not easy to walk on raw feet. I'm not sure if this is what it is but the oncologist said that one of the side effects of the chemo is foot and hand disease. If this side effect happens, then you have to stop the chemo. I don't have anything on my hands other than some tenderness in the fold of my skin on my fingers. I don't see a rash. I laugh because when I think of this hand and foot condition, I want to call it hoof and mouth instead of hand and foot! I bought a very cushiony pair of slippers today to ease the pain a little when I walk in the house on my raw feet.
There is something that doesn't hurt....my heart because it is so filled with all of the thoughts, prayers, well wishes and kindness from everyone!
On a lighter note, the weather is absolutely beautiful! There is nothing I love more than to have the windows open and a breeze blowing through!
--The fatigue is the most draining but that's what good afternoon naps are for.
--The nausea is to be expected and could be a lot worse. I usually find that I get more nausea when I'm hungry. Eating a piece of toasted bagel or a half of a peanut butter sandwich makes this feel a little better.
--The stomach spasms are definitely less severe than they were in the beginning. I take this as a good sign that the tumor is shrinking and not causing as much havoc on my pancreas????
--My skin is changing...spots coming here and there. Thank goodness for Cover Girl Makeup!
--My right hip all the way down to my foot still hurts like heck but that will teach me to NOT move heavy things. I went to the internist and got a steroid to reduce the inflammation in my sciatica. It's better but definitely NOT gone. I have a couple more days of the steroid so hopefully magic will happen soon.
--By far the most interesting side effect from the treatment is what is happening to my feet. The bottom of both feet have the feeling of being raw. Not easy to walk on raw feet. I'm not sure if this is what it is but the oncologist said that one of the side effects of the chemo is foot and hand disease. If this side effect happens, then you have to stop the chemo. I don't have anything on my hands other than some tenderness in the fold of my skin on my fingers. I don't see a rash. I laugh because when I think of this hand and foot condition, I want to call it hoof and mouth instead of hand and foot! I bought a very cushiony pair of slippers today to ease the pain a little when I walk in the house on my raw feet.
There is something that doesn't hurt....my heart because it is so filled with all of the thoughts, prayers, well wishes and kindness from everyone!
On a lighter note, the weather is absolutely beautiful! There is nothing I love more than to have the windows open and a breeze blowing through!
Tuesday, June 12, 2012
EXACTLY What I Needed
My ordinary day yesterday turned out to be EXACTLY what I needed. I even got out my glue gun and fixed something that needed it!! I woke up trying to make it as normal of a day as possible, focusing hard on taking the fact out that I had radiation to go to. I was determined not to take my nap in bed yesterday, instead pretending to be sleepy from reading a book on the couch. I knew the real reason my eyelids weren't staying open but that didn't mean that I was going to let my body take over my mind. I needed it to be my first day of summer ordinary day and by golly, IT WAS!
I want to thank my radiation buddies for allowing me to take control back of my life. It means a lot to me that they support me in knowing what I have to do. All my life, I have had a lot of responsibility on my shoulders. Being the oldest of 5 in my family was a task in itself. My dad worked away from home for years, so I became the fill-in-parent with my mom in making life decisions. Life wasn't easy much of the time but we made it work.
So take a person who needs to have control of their life ... then take that control away from them. Throw in a little tumor, sprinkle cancer cells on top and what do you have? You have someone who is in total disarray. I had to do something to stop that from happening. I had to make my day as normal as possible to give myself a purpose again. I remember when my mom was diagnosed with lung cancer. After taking her to the emergency room and after an immediate hospital stay, my mom came to live with us. I remember watching her just lay in the bed having no purpose. I knew she needed to get a washcloth back in her hand to clean the kitchen counters once again. I also remember when caring for my dad after his health began to decline, that every question someone asked him, his response would be, "Ask Sharon". He didn't have a purpose anymore. I started putting more responsibility back on him. He needed to feel that there was a reason to wake up in the morning.
So, my purpose each day this summer is to wake up and think about what I am going to "do" with my day. Although the glue gun is safely tucked back away in it's labeled container, I might just venture into my craft room again today and get some scrapbooking paper out to create! I might read a little more on the couch. I might piddle, because I am the biggest piddler there is! I will do all of this and perhaps more (or less) after I go to radiation this morning. I will do this (and perhaps less) because I can. I have a purpose.
I want to thank my radiation buddies for allowing me to take control back of my life. It means a lot to me that they support me in knowing what I have to do. All my life, I have had a lot of responsibility on my shoulders. Being the oldest of 5 in my family was a task in itself. My dad worked away from home for years, so I became the fill-in-parent with my mom in making life decisions. Life wasn't easy much of the time but we made it work.
So take a person who needs to have control of their life ... then take that control away from them. Throw in a little tumor, sprinkle cancer cells on top and what do you have? You have someone who is in total disarray. I had to do something to stop that from happening. I had to make my day as normal as possible to give myself a purpose again. I remember when my mom was diagnosed with lung cancer. After taking her to the emergency room and after an immediate hospital stay, my mom came to live with us. I remember watching her just lay in the bed having no purpose. I knew she needed to get a washcloth back in her hand to clean the kitchen counters once again. I also remember when caring for my dad after his health began to decline, that every question someone asked him, his response would be, "Ask Sharon". He didn't have a purpose anymore. I started putting more responsibility back on him. He needed to feel that there was a reason to wake up in the morning.
So, my purpose each day this summer is to wake up and think about what I am going to "do" with my day. Although the glue gun is safely tucked back away in it's labeled container, I might just venture into my craft room again today and get some scrapbooking paper out to create! I might read a little more on the couch. I might piddle, because I am the biggest piddler there is! I will do all of this and perhaps more (or less) after I go to radiation this morning. I will do this (and perhaps less) because I can. I have a purpose.
Sunday, June 10, 2012
Ordinary Day
I long for an ordinary day. The kind of ordinary days that I use to have before the end of April. But then I ask myself...what exactly would an ordinary day look like?
--A day with no worries...Well that's not possible when you're a mom, wife, friend, sibling...
--A day with no aches...I've always had back and hip pain so that certainly wasn't before all this happened.
--A day without fatigue...I get up at 4:40 am to go to work--I'm always tired in some sort of way.
I have decided that tomorrow is my first official day of trying to make it as ordinary of a day as possible. I decided that I can make my day as ordinary as I want it to be by my frame of mind.
In the real world, tomorrow would be my first official day of summer (minus two workdays). I am going to pretend that I was at school on Friday, waving to the buses, blowing bubbles and noise makers with the rest of the staff, as the kids pulled from our parking lot in their big yellow limos. I am going to pretend that I have a summer of projects to do before the school year begins again. I am going to get in the frame of mind that will hopefully give me the energy I need to feel whole again.
Tomorrow is the day...my ordinary day.
--A day with no worries...Well that's not possible when you're a mom, wife, friend, sibling...
--A day with no aches...I've always had back and hip pain so that certainly wasn't before all this happened.
--A day without fatigue...I get up at 4:40 am to go to work--I'm always tired in some sort of way.
I have decided that tomorrow is my first official day of trying to make it as ordinary of a day as possible. I decided that I can make my day as ordinary as I want it to be by my frame of mind.
In the real world, tomorrow would be my first official day of summer (minus two workdays). I am going to pretend that I was at school on Friday, waving to the buses, blowing bubbles and noise makers with the rest of the staff, as the kids pulled from our parking lot in their big yellow limos. I am going to pretend that I have a summer of projects to do before the school year begins again. I am going to get in the frame of mind that will hopefully give me the energy I need to feel whole again.
Tomorrow is the day...my ordinary day.
Subscribe to:
Posts (Atom)