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.
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