The date is set. I begin chemo next Friday. It's time to get the show on the road so that I can say this is ALL OVER! I had lab work done at the oncologist yesterday but don't know any of the results. I'm assuming that if anything doesn't look good, they will call me on Monday.
Because I'm so at risk, I was given the flu shot yesterday. I feel a little achy today but nothing I can't live through.
At the end of last week, I made the decision to go back to the increased dose of pain medicine that I was prescribed when I left UVA. The significant pain was impacting everything in my life...sleep, eating, finding a comfortable sitting position, energy level, etc. The last few days have been MUCH better. I have actually been able to get a few hours of sleep at a time. I've been up and moving more around the house. I've eaten an actual meal and believe it or not, one that I fixed. I made a meatloaf all by myself!
When I discussed my increased pain level with the oncologist yesterday, he said to not be a hero. He said that my concern for becoming addicted to the medicine should not be a concern because you don't become addicted to the medication when you have real pain.
God willing, after the aches from the flu shot are gone, I'm looking forward to a few days of enjoying the fall days before I begin chemo.
Saturday, September 29, 2012
Thursday, September 27, 2012
Where Oh Where Do I Begin?
Oh where oh where do I begin to fill in what has been going on in my little world? I tend to not blog when things aren't going well because I hate to sound negative in my messages. It's also because I don't have the energy to sit at the computer.
To put this last week in a nutshell...It has been filled with a lot of pain. My incision hurts. My back hurts. You would think that after 8 weeks since surgery, things would be feeling better. They definitely aren't. Over the last month I was able to reduce the amount of pain medicine that I had been taking. Because the pain has intensified, I have had to go back up to the dose that I left the hospital taking. I only started doing that last night. I have been holding out, increasing the break through pain medicine by 5 mg. here and there to help. I came to the realization that it just wasn't working. I am still in too much pain.
When I visited the surgeon several weeks ago, he reminded me that I was to take the pain medicine to relieve the pain. That my concern of becoming addicted to the medicine shouldn't be a focus now. The pain medicine was there to relieve the pain. The pain guides my day, making it so hard to do anything because of the level of discomfort. It also guides my emotions. I feel so discouraged because of not feeling well.
Last night, for my 12:00 am dose, I increased it to what I left the hospital taking. I had a better night sleep. I woke up able to do small projects this morning already. I'm still hurting....but NOT to the degree that I was. I will continue to follow this path for a little while, hoping to enjoy a few days of feeling better.
Tomorrow I go to the oncologist for lab work and to schedule chemo, which makes me think that next week will be the beginning of my 6 months of treatment. I'll go one day a week for an hour treatment for 3 weeks in a row. I'll have a week off before beginning the cycle for the next month over again.
Today I met another major milestone. When the nurse was here for my wound care, we were able to go from a wet and dry gauze to just a dry one now. I no longer need to "pack" the wound. The nurse said by next week, the wound should be completely healed over. WOW, it's been a long time coming but is finally here! They've reduced their visits to one time a week and project that I'll be discharged from their care in 2 weeks.
Here's hoping for a few days filled with a little more energy, happiness, and piddling before chemo begins and fatigue/fever set in.
To put this last week in a nutshell...It has been filled with a lot of pain. My incision hurts. My back hurts. You would think that after 8 weeks since surgery, things would be feeling better. They definitely aren't. Over the last month I was able to reduce the amount of pain medicine that I had been taking. Because the pain has intensified, I have had to go back up to the dose that I left the hospital taking. I only started doing that last night. I have been holding out, increasing the break through pain medicine by 5 mg. here and there to help. I came to the realization that it just wasn't working. I am still in too much pain.
When I visited the surgeon several weeks ago, he reminded me that I was to take the pain medicine to relieve the pain. That my concern of becoming addicted to the medicine shouldn't be a focus now. The pain medicine was there to relieve the pain. The pain guides my day, making it so hard to do anything because of the level of discomfort. It also guides my emotions. I feel so discouraged because of not feeling well.
Last night, for my 12:00 am dose, I increased it to what I left the hospital taking. I had a better night sleep. I woke up able to do small projects this morning already. I'm still hurting....but NOT to the degree that I was. I will continue to follow this path for a little while, hoping to enjoy a few days of feeling better.
Tomorrow I go to the oncologist for lab work and to schedule chemo, which makes me think that next week will be the beginning of my 6 months of treatment. I'll go one day a week for an hour treatment for 3 weeks in a row. I'll have a week off before beginning the cycle for the next month over again.
Today I met another major milestone. When the nurse was here for my wound care, we were able to go from a wet and dry gauze to just a dry one now. I no longer need to "pack" the wound. The nurse said by next week, the wound should be completely healed over. WOW, it's been a long time coming but is finally here! They've reduced their visits to one time a week and project that I'll be discharged from their care in 2 weeks.
Here's hoping for a few days filled with a little more energy, happiness, and piddling before chemo begins and fatigue/fever set in.
Thursday, September 20, 2012
A Day with a Purpose
Each day I give myself a "project" to complete. The projects are small, but they still give me a purpose for the day.
With the hospital bed gone, we have been working on getting the rec room back to normal. My husband and sons obviously took care of all of the furniture moving. My job has been putting the finishing touches to the room.
Yesterday I put all of my crafts back in their homes. They were stored in a large laundry basket to give us room for the other things we needed while I was "living" in that room. It was so much fun putting all my beautiful decorations around the room. I was so proud when I emptied the basket...my day with a purpose complete.
With the hospital bed gone, we have been working on getting the rec room back to normal. My husband and sons obviously took care of all of the furniture moving. My job has been putting the finishing touches to the room.
Yesterday I put all of my crafts back in their homes. They were stored in a large laundry basket to give us room for the other things we needed while I was "living" in that room. It was so much fun putting all my beautiful decorations around the room. I was so proud when I emptied the basket...my day with a purpose complete.
Wednesday, September 19, 2012
Where to Find Comfort?
You would think that the pain medicine that I'm taking for my incision would take away ALL the pain. It doesn't. My whole back is just killing me. It's a combination of pain and numbness from sitting and laying on it for even short periods of time. I have found some very clever ways of sleeping. I sit on our computer chair next to the bed with a stack of pillows on the edge of the bed. I lean over and fall asleep so that my back doesn't have to lean against the bed. Last night I wondered the house trying to find a place to sleep. The bed just wasn't working and I couldn't take the pain anymore. I wound up sleeping on the living room couch, propping the pillows up behind me as to find some relief. I would kill to lay on my side in my own bed. One of these days soon, I pray, that my stomach muscles are strong enough to do this again.
Sunday, September 16, 2012
Physical Therapy
I've been receiving physical therapy 2 times a week since my first week home. We've worked on building muscles to make walking safe. I've gone from using the walker to walking around my backyard unassisted. When I walk around the backyard, I take my time with slow and easy steps. I feel that I have to stop often, not because of the walking process, but because I run out of air. The physical therapist said that I'm using my lungs to breath but not my diaphragm. It's something that I really need to build and consciously work on.
On Friday, when the PT came, she had me complete some more timed tests. I completed them all with good numbers. Based on where I was to where I am now and my numbers on the tests, she dismissed me from physical therapy. I have to work on endurance, which is something that does not qualify continuation of therapy.
One more part of my life is back to normal!
On Friday, when the PT came, she had me complete some more timed tests. I completed them all with good numbers. Based on where I was to where I am now and my numbers on the tests, she dismissed me from physical therapy. I have to work on endurance, which is something that does not qualify continuation of therapy.
One more part of my life is back to normal!
Friday, September 14, 2012
Getting the House Back to Normal
Our rec room on the first level of our house has been my substitute bedroom since I've come home from the hospital. We rented a hospital bed, which has been a lifesaver. I'm still unable to lay flat because of my stomach muscles so the hospital bed has enabled me to stay at an angle and still get some sleep. The whole room was transpired into everything that I needed (thanks to some very talented and thoughtful friends/family).
It was time, however, to take the next step to make my life one step closer to the way it was before surgery. On Monday, the company came and took the hospital bed away. My make-shift bedroom is slowly becoming a rec room again.
In order for my husband have a good night sleep, I made our computer room, which has a queen size bed, into my bedroom. It's comforting because our rooms are right beside each other now rather than being on different levels of the house. Now I don't have to use the house phone to call my husband on his cell phone during the night if I need him. After several nights of trial and error and bad nights of sleep, I have made a substitute slanting "hospital bed" headboard. When we were in Charlottesville on Tuesday, my husband ran into Bed, Bath & Beyond and bought one of those college "husband" pillows. I turned it upside down to make it a sloping wedge. It's really helped to have a better night sleep. Thanks Alesia for the idea...it has really made a difference.
It was time, however, to take the next step to make my life one step closer to the way it was before surgery. On Monday, the company came and took the hospital bed away. My make-shift bedroom is slowly becoming a rec room again.
In order for my husband have a good night sleep, I made our computer room, which has a queen size bed, into my bedroom. It's comforting because our rooms are right beside each other now rather than being on different levels of the house. Now I don't have to use the house phone to call my husband on his cell phone during the night if I need him. After several nights of trial and error and bad nights of sleep, I have made a substitute slanting "hospital bed" headboard. When we were in Charlottesville on Tuesday, my husband ran into Bed, Bath & Beyond and bought one of those college "husband" pillows. I turned it upside down to make it a sloping wedge. It's really helped to have a better night sleep. Thanks Alesia for the idea...it has really made a difference.
Thursday, September 13, 2012
Lots of Updates
I know it's been a week since I've posted. It's not that I haven't wanted to. I just don't have the energy. But Sharon, how can writing a couple of sentences on a computer be draining? It takes more physical and emotional energy than I have been able to scrape up. When Kelli T. said she didn't have any fingernails left, I knew that I had to dig deep to update today!
On Monday, I went to the oncologist to find out about the last leg of my journey. Bottom line is that in a few weeks, I will begin chemotherapy again. This time I will go into the Virginia Cancer Center in Winchester for the treatment one time a week for an hour IV treatment. I'll go for 3 weeks in a row and then take a 1 week break. I will do this for ...... 6 months. I can't believe the length of this treatment. 6 months feels like an eternity to me. The number one side effect from the drug is fatigue. I can count on having a fever on the day of treatment. Other side effects, such as liver and lung toxicity, are rare.
On Tuesday, I went to UVA for another follow-up with the surgeon. We had to wait over an hour to get in to a room. It's a sad thing to see a doctor's office that specializes in what my surgeon's office does so busy. Another doctor came in to take the wound vac off and see what was what. Right away, she made the decision that I was FINISHED with the wound vac!. Everything looked wonderful and would continue healing with just a wet to dry dressing over the wound. Good bye suction machine stuck to my stomach for 24 hours a day, 7 days a week for over 5 weeks! Thank you for making such a major difference in healing my wound. Then Dr. Adam's nurse came in and took care of calling home health for the new wound care orders. I was so worried that I was once again not going to be able to see Dr. Adams. I really needed to see HIM. I think that the professionals that were with me saw how fragile my emotional state was. Perhaps the crying gave it away...I'm not sure. Within a few minutes, the most important person came in. For the next 15-20 minutes, Dr. Adams made the biggest difference in my world. We had a few heart to heart talks while I was in the hospital. During that time, I feel that he really got to know me. He ALWAYS listens to what I'm saying. On Tuesday, he did all those things again. I told him about the odds for cancer recurrence that I got when I went to the oncologists the day before. As he's done before, he helped me to put everything into perspective. He told me about living each day for that day because we don't know what tomorrow will bring. I grabbed hold of each and every word that he had to say. When I realized that this was the last time I would see him, he said that it would be professionally but that any time I needed to see him, we could meet on a social level. What kind of man does this? Only the most wonderful surgeon in the world. He has given so much to Butch and I.
On Wednesday morning, with the wound vac off for the first time, I took my first REAL shower. I don't need to say any more than OMG!
On Wednesday after my shower, I got a spurt of energy. It's amazing what hot water does for you. I dusted the rec room and cleaned my bathroom. I watered my inside plants, giving some a boost of life that they desperately needed.
On Wednesday afternoon, the home health care nurse came to finish up with the wound vac and change the dressing. A few minutes later, physical therapy came to have me do some exercises and walk.
On Wednesday evening, I crashed. After being gone for 2 days back to back for doctor appointments and then doing some "fall cleaning", I was exhausted. I usually don't need an excuse to be exhausted...just am. Yesterday I had my reasons.
Although it's true that I haven't had the physical energy to blog, the biggest reason has been that I haven't had the emotional strength. I've been struggling for me. One that I know that I'm going through. All I can say is that I'm trying hard to climb out from the dark hole that I found that I was in. Slow and steady, I'm inching forward.
On Monday, I went to the oncologist to find out about the last leg of my journey. Bottom line is that in a few weeks, I will begin chemotherapy again. This time I will go into the Virginia Cancer Center in Winchester for the treatment one time a week for an hour IV treatment. I'll go for 3 weeks in a row and then take a 1 week break. I will do this for ...... 6 months. I can't believe the length of this treatment. 6 months feels like an eternity to me. The number one side effect from the drug is fatigue. I can count on having a fever on the day of treatment. Other side effects, such as liver and lung toxicity, are rare.
On Tuesday, I went to UVA for another follow-up with the surgeon. We had to wait over an hour to get in to a room. It's a sad thing to see a doctor's office that specializes in what my surgeon's office does so busy. Another doctor came in to take the wound vac off and see what was what. Right away, she made the decision that I was FINISHED with the wound vac!. Everything looked wonderful and would continue healing with just a wet to dry dressing over the wound. Good bye suction machine stuck to my stomach for 24 hours a day, 7 days a week for over 5 weeks! Thank you for making such a major difference in healing my wound. Then Dr. Adam's nurse came in and took care of calling home health for the new wound care orders. I was so worried that I was once again not going to be able to see Dr. Adams. I really needed to see HIM. I think that the professionals that were with me saw how fragile my emotional state was. Perhaps the crying gave it away...I'm not sure. Within a few minutes, the most important person came in. For the next 15-20 minutes, Dr. Adams made the biggest difference in my world. We had a few heart to heart talks while I was in the hospital. During that time, I feel that he really got to know me. He ALWAYS listens to what I'm saying. On Tuesday, he did all those things again. I told him about the odds for cancer recurrence that I got when I went to the oncologists the day before. As he's done before, he helped me to put everything into perspective. He told me about living each day for that day because we don't know what tomorrow will bring. I grabbed hold of each and every word that he had to say. When I realized that this was the last time I would see him, he said that it would be professionally but that any time I needed to see him, we could meet on a social level. What kind of man does this? Only the most wonderful surgeon in the world. He has given so much to Butch and I.
On Wednesday morning, with the wound vac off for the first time, I took my first REAL shower. I don't need to say any more than OMG!
On Wednesday after my shower, I got a spurt of energy. It's amazing what hot water does for you. I dusted the rec room and cleaned my bathroom. I watered my inside plants, giving some a boost of life that they desperately needed.
On Wednesday afternoon, the home health care nurse came to finish up with the wound vac and change the dressing. A few minutes later, physical therapy came to have me do some exercises and walk.
On Wednesday evening, I crashed. After being gone for 2 days back to back for doctor appointments and then doing some "fall cleaning", I was exhausted. I usually don't need an excuse to be exhausted...just am. Yesterday I had my reasons.
Although it's true that I haven't had the physical energy to blog, the biggest reason has been that I haven't had the emotional strength. I've been struggling for me. One that I know that I'm going through. All I can say is that I'm trying hard to climb out from the dark hole that I found that I was in. Slow and steady, I'm inching forward.
Friday, September 7, 2012
Rough Week
It's been a very rough week.
*Adjusting medicine to take care of my pain has been a challenge.
*Feeling sick and throwing up for the first time was a fear that I've had. Luckily one of the RN's had told me to hold a pillow or towel on my stomach to give it support helped immensely. I have to use the pillow trick even when I yawn because that hurts my incision.
*Extreme fatigue.
*Very little appetite but knowing that I need to eat.
It's been a very rough week.
*Adjusting medicine to take care of my pain has been a challenge.
*Feeling sick and throwing up for the first time was a fear that I've had. Luckily one of the RN's had told me to hold a pillow or towel on my stomach to give it support helped immensely. I have to use the pillow trick even when I yawn because that hurts my incision.
*Extreme fatigue.
*Very little appetite but knowing that I need to eat.
It's been a very rough week.
Sunday, September 2, 2012
Wedding Pictures
Gregory and Loren's wedding pictures are starting to come back. They are simply beautiful and signify the occasion in the most memorable way.
Smaller and Smaller
There are 5 nurses that circulate in seeing patients. Some have been on vacation and others have been filling in for others at different parts of the county. I was scheduled to have my wound vac changed tomorrow but one of the nurses called earlier this morning to see if she could change it today. I always say "yes" to their schedule. Whatever works for them, works for me.
The nurse today hasn't been here for 2 weeks due to scheduling. She was absolutely blown away with how much the wound has healed in that 2 week period of time. Butch even commented on how much it healed since being at Dr. Adam's office on Thursday. That's the news I want to hear. I need this wound to be completely healed so that I can deal with any of the side effects that this new chemo drug will give me.
Although this is absolutely fantastic news, I'm feeling frustrated.
I don't see an end in sight.
I'm struggling with feeling that I'm moving forward.
I KNOW I am....I just don't FEEL that I am.
The nurse today hasn't been here for 2 weeks due to scheduling. She was absolutely blown away with how much the wound has healed in that 2 week period of time. Butch even commented on how much it healed since being at Dr. Adam's office on Thursday. That's the news I want to hear. I need this wound to be completely healed so that I can deal with any of the side effects that this new chemo drug will give me.
Although this is absolutely fantastic news, I'm feeling frustrated.
I don't see an end in sight.
I'm struggling with feeling that I'm moving forward.
I KNOW I am....I just don't FEEL that I am.
Saturday, September 1, 2012
Sleep
I am so tired.
All I want to do is sleep.
All I do is sleep.
Since coming home from my doctor's appointment on Thursday, I reduced the amount of oxycodone that I'm taking by 1 pill so I should have more energy.
I don't......I am so tired.
All I want to do is sleep.
All I do is sleep.
Since coming home from my doctor's appointment on Thursday, I reduced the amount of oxycodone that I'm taking by 1 pill so I should have more energy.
I don't......I am so tired.
Thursday, August 30, 2012
Post-Op Visit
Today I had my 1 month post-op visit at UVA at 11:30. My surgeon was in surgery so I saw his personal nurse. She took out the wound vac and was VERY pleased with how the wound looked. She sent me home in a gauze dressing. The nurse will put the wound vac back on in the morning when she comes.
It felt odd walking (well really riding in the wheelchair) out of the doctor's office today without the wound vac hooked up. Butch decided to try a little experiment. I was feeling okay and we were both hungry with having been in the doctor's office for over 2 hours.Butch is trying to get my life back to as close as normal as he can. Soooooo, he took me on a mini date. We went to Panerera Bread for our first outing since surgery. I walked in on his arm, very slow and belabored, but walking none-the-less. I sat down while he ordered a sandwich that we split and a smoothie. I ate about 1/4 of the sandwich. Ohhh, it was so good. We reversed our trip back to the car for a smooth ride home. I slept the entire trip home. I was so tired from the trip but it was a good tired. After we got home, Butch actually folded the walker up and moved it to another room. He thinks I'm good without it. I agree with him. In fact yesterday for PT, I actually walked out to my back yard in the grass without the walker (and as they say it in their goal...over varying terrains). I'm still a slow turtle but getting better strength wise!
With having been sent home with a gauze dressing, that meant that Butch had to change it tonight for a fresh packing. The nurse sent him home with everything he needed and they went over the process several times in the office. I am absolutely amazed at my husband. He followed the procedure to the "t" and did it so efficiently. I am so very lucky to have him be able to do this for me. I can't even look down at my stomach when this is being done. I don't know what I would do if he had a hard time changing the dressing. My roommate Nancy and I did it out of dire necessity several weeks ago prior to getting the wound vac. I have 2 very strong people that follow through with anything they have to because they know it's what I need. I am so lucky.
We devised a plan today to cut back on my pain medicine a little. It's here if I need to increase it to what I currently take if the pain dictates that I need it, but by decreasing it a little, I should be able to not be as tired as I currently am. Tonight will be the first test. Wish me luck.
It felt odd walking (well really riding in the wheelchair) out of the doctor's office today without the wound vac hooked up. Butch decided to try a little experiment. I was feeling okay and we were both hungry with having been in the doctor's office for over 2 hours.Butch is trying to get my life back to as close as normal as he can. Soooooo, he took me on a mini date. We went to Panerera Bread for our first outing since surgery. I walked in on his arm, very slow and belabored, but walking none-the-less. I sat down while he ordered a sandwich that we split and a smoothie. I ate about 1/4 of the sandwich. Ohhh, it was so good. We reversed our trip back to the car for a smooth ride home. I slept the entire trip home. I was so tired from the trip but it was a good tired. After we got home, Butch actually folded the walker up and moved it to another room. He thinks I'm good without it. I agree with him. In fact yesterday for PT, I actually walked out to my back yard in the grass without the walker (and as they say it in their goal...over varying terrains). I'm still a slow turtle but getting better strength wise!
With having been sent home with a gauze dressing, that meant that Butch had to change it tonight for a fresh packing. The nurse sent him home with everything he needed and they went over the process several times in the office. I am absolutely amazed at my husband. He followed the procedure to the "t" and did it so efficiently. I am so very lucky to have him be able to do this for me. I can't even look down at my stomach when this is being done. I don't know what I would do if he had a hard time changing the dressing. My roommate Nancy and I did it out of dire necessity several weeks ago prior to getting the wound vac. I have 2 very strong people that follow through with anything they have to because they know it's what I need. I am so lucky.
We devised a plan today to cut back on my pain medicine a little. It's here if I need to increase it to what I currently take if the pain dictates that I need it, but by decreasing it a little, I should be able to not be as tired as I currently am. Tonight will be the first test. Wish me luck.
Sunday, August 26, 2012
Where's My Walker?
For the last several days, I have been very tired. The best medicine for that is sleep, so that's what I've been doing in between my phone alarm going off to let me know that it's time for pain medicine.
I met all of the short term goals that the PT assistant set for me. I made a personal goal for myself that I am very happy to say that I have also met. When I get out of bed, I have the walker at the foot of the bed only IF I need it. I am getting out of bed, walking to the bathroom and getting back into bed or my chair WITHOUT using the walker! This afternoon, I even walked to the front door without using the walker! I have a large desk in the entryway that I used as a "crutch" to hold onto. As I've always said about some of my students...we sometimes make them more disabled by giving them tools that they don't need. For my own body, I know that it's time to take the walker away for short distances. I KNOW I can do this!
I'm sitting in my chair in the rec room looking out into our back yard. Within the last 15 minutes, I've seen 3 hummingbirds all enjoying the butterfly bush. They flutter here and there, up and down, back and forth. The hummingbird is my inspiration to wean myself from the walker! I too will be "fluttering" here and there, up and down, back and forth very soon! I will be fluttering with a huge smile on my face because I am so grateful to be getting back some of the skills that have been taken away from me the last several weeks. I promise myself that I will not ever take life for granted. I will always appreciate the little things that we do automatically without thing twice about doing it.
I met all of the short term goals that the PT assistant set for me. I made a personal goal for myself that I am very happy to say that I have also met. When I get out of bed, I have the walker at the foot of the bed only IF I need it. I am getting out of bed, walking to the bathroom and getting back into bed or my chair WITHOUT using the walker! This afternoon, I even walked to the front door without using the walker! I have a large desk in the entryway that I used as a "crutch" to hold onto. As I've always said about some of my students...we sometimes make them more disabled by giving them tools that they don't need. For my own body, I know that it's time to take the walker away for short distances. I KNOW I can do this!
I'm sitting in my chair in the rec room looking out into our back yard. Within the last 15 minutes, I've seen 3 hummingbirds all enjoying the butterfly bush. They flutter here and there, up and down, back and forth. The hummingbird is my inspiration to wean myself from the walker! I too will be "fluttering" here and there, up and down, back and forth very soon! I will be fluttering with a huge smile on my face because I am so grateful to be getting back some of the skills that have been taken away from me the last several weeks. I promise myself that I will not ever take life for granted. I will always appreciate the little things that we do automatically without thing twice about doing it.
Wednesday, August 22, 2012
Hello to My Kitchen
When the PT assistant came yesterday, she put me through quite an exercise regiment. She had me take several trips from my back to front door using the walker. I do that several times a day by myself so I'm used to that workout. She gave me more exercises to do with my feet to build up strength and endurance. It's very evident that I have significantly decreased strength in my right leg from the sciatica. After I heal from surgery, I hope to pursue physical therapy to build the nerves back in that leg.
The most exciting thing the PT assistant had me do was to climb the 7 or 8 steps from my entryway to my living room. She was right by my side and had me use my stronger leg first to start up the steps. When I reached the top, I started to cry. I hadn't seen my kitchen for 3 weeks! I actually sat at the kitchen table for a little bit to get my energy back for the climb back downstairs. It was so awesome to touch my kitchen counters, look outside from the kitchen window, and see what a wonderful job my husband has done keeping the 2nd level of our house clean.
Going back down was a little scary but definitely do-able. She was again right by my side. I was so proud of myself!!!!
Check off of list---Major obstacle---Climb to 2nd floor---Chaaaaaching!
The most exciting thing the PT assistant had me do was to climb the 7 or 8 steps from my entryway to my living room. She was right by my side and had me use my stronger leg first to start up the steps. When I reached the top, I started to cry. I hadn't seen my kitchen for 3 weeks! I actually sat at the kitchen table for a little bit to get my energy back for the climb back downstairs. It was so awesome to touch my kitchen counters, look outside from the kitchen window, and see what a wonderful job my husband has done keeping the 2nd level of our house clean.
Going back down was a little scary but definitely do-able. She was again right by my side. I was so proud of myself!!!!
Check off of list---Major obstacle---Climb to 2nd floor---Chaaaaaching!
Tuesday, August 21, 2012
Happy Birthday Butch
Today is my husband's birthday! Although I can't make this year's birthday special for him, I will make up for it next year. The best gift I can give him is the gift that surgery is over and I'm on the road to recovery. Happy Birthday my dear, dear husband!!!
I have seen 2 different RN's during the time I have been on home care. The nurses come 3 days a week. Yesterday, the nurse that initially put the wound vac on came to change the dressing. I was overjoyed when she said that in the 4 days since the wound vac has been on, the wound has really closed! She said that it has a significant amount to go but that the tissue looks great! I was so happy!
It turns out that the RN that put my wound vac on remembers me from when I taught at Sandy Hook for 20 years. She said that I was her speech therapist when she was in elementary school! It's such a small world. I am so grateful that this young nurse can help me now at such a critical time in my life.
I think for the first time that the fluid in my legs are decreasing a little. I'm going from the size of an elephant to an old box turtle.
The OT came for an evaluation today. She made some recommendations for a shower chair when that time comes.
Butch said that he thinks that we'll venture outside next week when I feel like I have a little more upper body strength. I get short winded from walking short distances at this point. I'm sure another week will make a big difference in my strength.
I washed my own hair again this morning in the bathroom sink. I've got it down to a science. You just can't keep a girl away from clean hair! It does a world of good for how I feel inside!
Although I'm not often "hungry", I am making myself eat. I drink 2 Ensure's a day to "ensure" that I get the necessary vitamins that I need. I've been eating scrambled eggs several times a week for the protein. Although my diet is anything that I want to eat, I find that I stick to very tiny meals.
I have seen 2 different RN's during the time I have been on home care. The nurses come 3 days a week. Yesterday, the nurse that initially put the wound vac on came to change the dressing. I was overjoyed when she said that in the 4 days since the wound vac has been on, the wound has really closed! She said that it has a significant amount to go but that the tissue looks great! I was so happy!
It turns out that the RN that put my wound vac on remembers me from when I taught at Sandy Hook for 20 years. She said that I was her speech therapist when she was in elementary school! It's such a small world. I am so grateful that this young nurse can help me now at such a critical time in my life.
I think for the first time that the fluid in my legs are decreasing a little. I'm going from the size of an elephant to an old box turtle.
The OT came for an evaluation today. She made some recommendations for a shower chair when that time comes.
Butch said that he thinks that we'll venture outside next week when I feel like I have a little more upper body strength. I get short winded from walking short distances at this point. I'm sure another week will make a big difference in my strength.
I washed my own hair again this morning in the bathroom sink. I've got it down to a science. You just can't keep a girl away from clean hair! It does a world of good for how I feel inside!
Although I'm not often "hungry", I am making myself eat. I drink 2 Ensure's a day to "ensure" that I get the necessary vitamins that I need. I've been eating scrambled eggs several times a week for the protein. Although my diet is anything that I want to eat, I find that I stick to very tiny meals.
Saturday, August 18, 2012
Let's Take a Trip!
We had to take another trip to the ER today but luckily it was to our local hospital and not to UVA.
Over the last few days, my right leg has developed a large red patch on the area between my knee and ankle (at least where an ankle would normally be located if it weren't that my legs were the size of elephants). Each day the patch has been getting redder and larger. It's warm to the touch. The home health care nurse who put on my wound vac and the PT assistant both said to keep an eye on it. The calf on that leg has become very sore as well. Today when my regular nurse came to change my stomach dressing, she said that she didn't like the look of my leg and that we really needed to be safe than sorry. Things would be very serious if it was a blood clot and we needed to find that out.
Before the nurse even had things packed up, Butch had the car pulled around to the front and my shoes ready to take me to the ER. We weren't going to let a blood clot be what gets me in the end after all I've been through.
At the ER, they did a sonogram. There were no blood clots found on either leg. They determined that it's phlebitis. I'm on 2 regular aspirin every 4 hours, however I'm starting out with 1 aspirin to see if it affects my stomach at all. If all is okay, I will increase it to 2 aspirin every 4 hours.
Leaving the house is not easy. Being away from a bathroom is not easy. I realize that this wound healing process is going to take quite a large chunk of time. I know that I'll gather more and more strength each and every day. I hope that after I get all this strength back, the new chemo that I be put on doesn't take it all away again. Time will tell. I go back to Dr. Adams for a post op visit on August 30th and then to Dr. Major, the oncologist, on September 10th. He'll discuss chemo with us then.
Here's hoping that the rest of the evening will be quiet an uneventful!
Over the last few days, my right leg has developed a large red patch on the area between my knee and ankle (at least where an ankle would normally be located if it weren't that my legs were the size of elephants). Each day the patch has been getting redder and larger. It's warm to the touch. The home health care nurse who put on my wound vac and the PT assistant both said to keep an eye on it. The calf on that leg has become very sore as well. Today when my regular nurse came to change my stomach dressing, she said that she didn't like the look of my leg and that we really needed to be safe than sorry. Things would be very serious if it was a blood clot and we needed to find that out.
Before the nurse even had things packed up, Butch had the car pulled around to the front and my shoes ready to take me to the ER. We weren't going to let a blood clot be what gets me in the end after all I've been through.
At the ER, they did a sonogram. There were no blood clots found on either leg. They determined that it's phlebitis. I'm on 2 regular aspirin every 4 hours, however I'm starting out with 1 aspirin to see if it affects my stomach at all. If all is okay, I will increase it to 2 aspirin every 4 hours.
Leaving the house is not easy. Being away from a bathroom is not easy. I realize that this wound healing process is going to take quite a large chunk of time. I know that I'll gather more and more strength each and every day. I hope that after I get all this strength back, the new chemo that I be put on doesn't take it all away again. Time will tell. I go back to Dr. Adams for a post op visit on August 30th and then to Dr. Major, the oncologist, on September 10th. He'll discuss chemo with us then.
Here's hoping that the rest of the evening will be quiet an uneventful!
Wednesday, August 15, 2012
Out of Town Trip
It's been a challenge to post for so many reasons. First and foremost is the limited energy level that I have. When I am awake, it's hard for me to keep my eyes open for any length of time. Forming complete sentences and spelling words correctly in my blog takes a lot of effort. I truly know what "word finding" issues are all about for my students. I have a hard time getting the words out of what I want to say. Patience Grasshopper...Patience.
Monday was the first day that Beth, the RN from home health came out. I really like her! She is such an advocate for me. When she changed my incision, she realized that there was a problem. Beth called Dr. Adam's nurse Liz right away and explained about the excessive drainage from the incision. She said they wanted to see me at UVA right away. So off Nancy and I went. I should have gone to the "beauty salon" (head under sink for a shampoo) earlier in the day had I know that we were going to be taking an "out of town" trip.
I can't even begin to put into words what Nancy (my roommate from college) did for me/us while she was here. She helped me in every conceivable way. She made sure that she had a vegetable with every meal that she made me. For her, I ate my spinach! As Nancy and I close our eyes, there are memories that only we can share while she was helping to take care of my wound. I love her from every fiber of my body.....
At UVA, Dr. Adams cleaned the now very open wound. It's still together on the top and bottom of the incision. The middle is quite deep. I won't go into those details because it's even hard for me to visualize. I don't want you to have to think about it. The great news is that there is NO INFECTION! Because my needs have significantly changed, they are having the RN come in daily. We are in charge of cleaning the incision the 2nd time each day. A "wound vac" has been ordered and should arrive Thursday or Friday. The nurse will install that when it arrives. She will cut foam to fit the inside of the incision. The pump plugs in and continually suctions the drainage from the incision. I may have to have this on for 30 to 60 days but from what I understand, will greatly increase the wound healing.
PT has been out for an evaluation. OT will be coming on Monday for their evaluation. Once I start feeling stronger, we will work on climbing steps. I am definitely willing to wait. It takes all the energy I have to walk to the bathroom in our rec room, let alone lift my feet from one step to the other.
The hospital bed is my salvation. The PT at UVA said that I didn't need one, but she was definitely wrong. There is NO WAY that I can lay all the way flat....no way. I know things will change at the end of the month but until then, I NEED THE HOSPITAL BED!
I'm going to end now because I'm pretty well tapped out. I hope to update again soon. Until then, thank you everyone for your thoughts and prayers. I need them every hour of the day. I was told from one of the nurse's that my most important job right now is to recover from surgery. That has to be my priority. Nutrition goes hand and hand with recovery.
Monday was the first day that Beth, the RN from home health came out. I really like her! She is such an advocate for me. When she changed my incision, she realized that there was a problem. Beth called Dr. Adam's nurse Liz right away and explained about the excessive drainage from the incision. She said they wanted to see me at UVA right away. So off Nancy and I went. I should have gone to the "beauty salon" (head under sink for a shampoo) earlier in the day had I know that we were going to be taking an "out of town" trip.
I can't even begin to put into words what Nancy (my roommate from college) did for me/us while she was here. She helped me in every conceivable way. She made sure that she had a vegetable with every meal that she made me. For her, I ate my spinach! As Nancy and I close our eyes, there are memories that only we can share while she was helping to take care of my wound. I love her from every fiber of my body.....
At UVA, Dr. Adams cleaned the now very open wound. It's still together on the top and bottom of the incision. The middle is quite deep. I won't go into those details because it's even hard for me to visualize. I don't want you to have to think about it. The great news is that there is NO INFECTION! Because my needs have significantly changed, they are having the RN come in daily. We are in charge of cleaning the incision the 2nd time each day. A "wound vac" has been ordered and should arrive Thursday or Friday. The nurse will install that when it arrives. She will cut foam to fit the inside of the incision. The pump plugs in and continually suctions the drainage from the incision. I may have to have this on for 30 to 60 days but from what I understand, will greatly increase the wound healing.
PT has been out for an evaluation. OT will be coming on Monday for their evaluation. Once I start feeling stronger, we will work on climbing steps. I am definitely willing to wait. It takes all the energy I have to walk to the bathroom in our rec room, let alone lift my feet from one step to the other.
The hospital bed is my salvation. The PT at UVA said that I didn't need one, but she was definitely wrong. There is NO WAY that I can lay all the way flat....no way. I know things will change at the end of the month but until then, I NEED THE HOSPITAL BED!
I'm going to end now because I'm pretty well tapped out. I hope to update again soon. Until then, thank you everyone for your thoughts and prayers. I need them every hour of the day. I was told from one of the nurse's that my most important job right now is to recover from surgery. That has to be my priority. Nutrition goes hand and hand with recovery.
One Small Setback...
Sharon is continuing to do well at home and is continuing to get stronger each day. On Monday, the RN came to check on Sharon's incision and found that some of the stitches were coming loose. So, Sharon and Nancy were off to UVA to have that problem fixed. She met with the doctor who was able to fix the stitches and clean up the incision. They sent her right home afterwards. I talked with Butch this morning and Sharon was up walking. The RN is to return this morning around 10 to change the gauze and discuss a 'wound pack' with Sharon and Butch. I don't have too much more to report for now, sorry for the short updates!
Sunday, August 12, 2012
It's Me!
I'm sitting in my hospital bed with Val's iPad in my lap. Our computer is down and will continue to be so until I have the energy to reboot the system. Val has the front and back doors open on this beautiful summer morning. My Casey dog and kitty cat Emily are right by my side. My roommate Nancy is coming this afternoon to stay with me until Butch breaks from his shift on Tuesday evening.
Ohhhh it has been quite a week. I am overwhelmed by what Dr. Adams has done to save my life. Each time he would come in to see me, I held his hand in mine, feeling the immense power that his fingers had in them. Grateful doesn't even begin to describe how I feel.
The pain regiment that they have me on is working. I'm on 30 mg of ocycontin every 12 hours and 10 mg of oxycodone every 4 hours. My biggest challenge is getting in and out of bed. Thank goodness we paid for a hospital bed out of pocket. Lying flat is impossible because of the 44 incisions. Even getting out of bed from a sitting position is very, very hard. I know that I will be getting stronger each day.
Everyone has been so fantastic to us. I can truly say that I would not have been able to make it to this point without all of the incredible help we have been given! Thank you from the bottom of my heart!
Ohhhh it has been quite a week. I am overwhelmed by what Dr. Adams has done to save my life. Each time he would come in to see me, I held his hand in mine, feeling the immense power that his fingers had in them. Grateful doesn't even begin to describe how I feel.
The pain regiment that they have me on is working. I'm on 30 mg of ocycontin every 12 hours and 10 mg of oxycodone every 4 hours. My biggest challenge is getting in and out of bed. Thank goodness we paid for a hospital bed out of pocket. Lying flat is impossible because of the 44 incisions. Even getting out of bed from a sitting position is very, very hard. I know that I will be getting stronger each day.
Everyone has been so fantastic to us. I can truly say that I would not have been able to make it to this point without all of the incredible help we have been given! Thank you from the bottom of my heart!
Thursday, August 9, 2012
Sharon Made it Home!
Sharon is back in Woodstock and she seems very content. Loren, Sharon's good friend Alisa and I spent the day making preparations for Sharon to come home. We transformed Sharon's downstairs living room into, as Loren said, 'Hotel de Sharon'. We have every thing within easy reach that we could possibly think of and tried to make the room as welcoming and comfortable as possible. We moved her recliner into the room, made up her bed with fresh linens and soft blankets, set up a mini fridge and stocked it with lots of nourishment. We organized the bathroom with any thing that she may need and set up a basket with all of the cards she has received to read. I think that we did an outstanding job and I think Sharon was surprised and happy with the outcomes.
Sharon and Butch got home a little after 6 o'clock. Brad, Gregory, Loren and I were all waiting and welcomed them home. Casey even came down to welcome Sharon. Sharon crawled into her bed, got under her covers and seemed to relax. We sat and visited with her for awhile and she mentioned many times how happy she was to be home. It was a wonderful evening. We left Sharon in her bed, relaxing, and happy.
Sharon and Butch got home a little after 6 o'clock. Brad, Gregory, Loren and I were all waiting and welcomed them home. Casey even came down to welcome Sharon. Sharon crawled into her bed, got under her covers and seemed to relax. We sat and visited with her for awhile and she mentioned many times how happy she was to be home. It was a wonderful evening. We left Sharon in her bed, relaxing, and happy.
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