I know I am a few days late from 3 weeks out. But I've had people ask so I thought I would provide an update. I've continued to make baby progress steps each day towards healing. I've also made progress with the sleeping. I have decided to let my stomach breathe when I am home. It does tend to get uncomfortable after while. But I realized the stomach binder was very constrictive and I sleep better without it even if it is tender. I have become able to sleep the entire night on my stomach! This is huge to me. I still wake up part way through the night feeling like a beached whale stuck on it's back. Luckily, I have an iron bed so I can use my arms to help me turn over or switch positions to give my squished stomach rest a minute. But I admit after the last week, even flipping myself has become easier. Thank god.
The entire week, I've been dreading my return to work next week. I can't believe how quickly that 4 weeks has flown by. I am not 100% sure I am ready. I still get really really tired every day requiring a few hour nap. I also struggle to set up for long periods of time. But I decided to make the commitment and do my best considering I work from home. So I return to work on April 2. The good news is I will go back for 2 days and then have a weekend again to recuperate. Also I figure I can work laying down or stretching out if necessary. And if it is simply too much, I believe I can go out again although I'm very motivated to get back within the 30 days. I hope it isn't too crazy and I get a little grace period to get back up to speed. I know I'm not ready to pick up my 50+ hour work weeks.
Philip had continued to help me so much. He is still at the ready to help me in any way I need. He has still been doing the dishes and fetching things for me. I'm still not able to lift so he has been doing all that for me. He is always happy to run to the grocery store for me or pick up food to go. I am totally impressed with how helpful he has been.
I've been working hard on pushing myself to do more. I spent a few hours at Starbucks while Trudy cleaned on Wednesday. I also joined my ladies group to craft last night. Today I went and got my hair done. I was very happy he was quick today....only 2 hours. And I met Philip for lunch today. But then I came home for my regular routine of a 2.5 hour nap. I'm still very tired this evening so I will make sure the couch (and my Sissy kitty) don't get lonely.
I think the hard part of this recovery is behind me. I am guessing it will take more time before I feel 100% but overall, I'm doing pretty good. The only time I am uncomfortable is sitting up for long periods of time or the occasional "pinching/burning" where the parts used to be. I see my doctor for my follow up appointment in a few weeks so I won't know more from a medical standpoint until then.
Saturday, March 28, 2015
Tuesday, March 24, 2015
"The End of Your Life Book Club"
When Nola came out, she had just started reading a book she was fascinated with. It was called "The End of Your Life Book Club" by Will Schwalbe. It is a true story. It is a book about a grown man and his Mother's journey with pancreatic cancer. The Mom is a vibrant woman that was very involved in international charity. Very well traveled and educated. Clearly they have money too which would be very nice.
When Nola got settled in, she started talking about the book with me. Tough questions like "What would you do if you had terminal cancer?" Would you treat even though you know you can't cure it? When do you decide you are done treating and it is time to let it go? How do you prepare to come to terms with the idea of your own death? Sounds like a gooley discussion but those are things that go through my mind. And it really opened the door for Nola and I to have a very candid discussion about these tough questions.
Nola also shared some interesting tidbits on things she learned when communicating with someone about their cancer. Instead of asking "How do you feel today?" you can ask "Do you want to talk about how you feel today?" That way, if the cancer patient doesn't feel like talking about it, they have that choice. Interesting.
I decided to start reading the book while Nola was visiting. I really appreciated the way the characters in the book approach the cancer. It is always an obvious issue through the book but they go on with life. The Mom continues to plan for her future. She travels and continues working for her charities. And the Son and Mom are avid readers. They decided to use her chemo infusion times to talk about books they read together. The book gives a long list of recommended books to read. It was interesting how they used the books to grow close together and find something else to focus on while she was fighting for more time. You can really appreciate how much more time she got and how she made it as full as possible. Spoiler alert - she does die. But her grace and bravery as she goes through the journey is amazing. She lived significantly longer then the original prognosis. I didn't finish the book before Nola left. I had about 100 pages left. I ordered it from Amazon but I just couldn't wait for it so I picked it up at the library.
What are my thoughts on the tough questions Nola and I talked about? Well for me, I think finding an oncologist you trust and have the same established agreement about the issues is key. Early on, I asked Dr. L to fight with me. Give me quality of life. Be hopeful. And when and if it is time to give up hope, be honest and let me know it is time to stop fighting. The great news is my cancer has a great prognosis. And over the last 12 years, I've had great success in fighting it. Dr. L and I agree that my cancer probably isn't going to be the thing that kills me. That is good to know!
I really enjoyed the book although it was sad in the end but I appreciated them sharing the personal journey in such a positive way. Cancer really sucks. When faced with it, I really do believe it is all about the journey.
When Nola got settled in, she started talking about the book with me. Tough questions like "What would you do if you had terminal cancer?" Would you treat even though you know you can't cure it? When do you decide you are done treating and it is time to let it go? How do you prepare to come to terms with the idea of your own death? Sounds like a gooley discussion but those are things that go through my mind. And it really opened the door for Nola and I to have a very candid discussion about these tough questions.
Nola also shared some interesting tidbits on things she learned when communicating with someone about their cancer. Instead of asking "How do you feel today?" you can ask "Do you want to talk about how you feel today?" That way, if the cancer patient doesn't feel like talking about it, they have that choice. Interesting.
I decided to start reading the book while Nola was visiting. I really appreciated the way the characters in the book approach the cancer. It is always an obvious issue through the book but they go on with life. The Mom continues to plan for her future. She travels and continues working for her charities. And the Son and Mom are avid readers. They decided to use her chemo infusion times to talk about books they read together. The book gives a long list of recommended books to read. It was interesting how they used the books to grow close together and find something else to focus on while she was fighting for more time. You can really appreciate how much more time she got and how she made it as full as possible. Spoiler alert - she does die. But her grace and bravery as she goes through the journey is amazing. She lived significantly longer then the original prognosis. I didn't finish the book before Nola left. I had about 100 pages left. I ordered it from Amazon but I just couldn't wait for it so I picked it up at the library.
What are my thoughts on the tough questions Nola and I talked about? Well for me, I think finding an oncologist you trust and have the same established agreement about the issues is key. Early on, I asked Dr. L to fight with me. Give me quality of life. Be hopeful. And when and if it is time to give up hope, be honest and let me know it is time to stop fighting. The great news is my cancer has a great prognosis. And over the last 12 years, I've had great success in fighting it. Dr. L and I agree that my cancer probably isn't going to be the thing that kills me. That is good to know!
I really enjoyed the book although it was sad in the end but I appreciated them sharing the personal journey in such a positive way. Cancer really sucks. When faced with it, I really do believe it is all about the journey.
Thursday, March 19, 2015
Two weeks out - an update
Yesterday was 2 weeks out from surgery. I continue feel better and making progress. Nola and I had a great visit. Mom and Marsha also came to visit. Dad and Cindy visited. And Aunt DeOna came and brought lunch one day. We kept pretty busy and I admit I didn't rest like I should have. Yes I still napped every day and I visited while stretched out on the couch. But there was lots of up and down and that was hard to do.
Nola worked her butt off doing dishes and laundry and grocery shopping. She was great at corralling the social activities and making sure I took care of myself. Her visit flew by so fast and before I knew it, she was flying home.
I'm always sad when our visits end. I will see her in June when we go to DC so that is good.
My work disability carrier has approved my leave until 4/1. That is a relief to get taken care of. Hopefully I won't have a break in my paycheck.
I have had trouble sleeping..even with sleeping pills. I think it is the stomach sleeping thing. I have been able to flip over for about 2 hours but then I wake up really sore. So it is a catch 22 if I take the 2 hours to sleep well but hurt or not sleep more than 30-45 minutes at a time but not hurt after flipping over. So far, I've taken the 2 hours of sleep. I actually have a routine I do. 2 hours tummy, 1 hour left side, 1 hour right side, 2 hours tummy, 1 hour each side, etc. I cannot sleep on my back!
One thing I didn't really count on came last week. That was gas pains. When you have laproscopic surgery, they puff you full of CO2. Sooner or later, you have to pass that gas. Let's just say it is not pleasant at all. But I finally worked it out and am past the gas pains for the most part.
This week has been much more quiet which is probably good. Philip continues to help me daily. He stops by after school. I have people checking in on me which is really sweet. It has been good for me to establish a routine and work on being independent. I am able to sit up a little longer and getting up is easier this week.
So all is good here. I appreciate everyone's love and support. It means so much to me.
Nola worked her butt off doing dishes and laundry and grocery shopping. She was great at corralling the social activities and making sure I took care of myself. Her visit flew by so fast and before I knew it, she was flying home.
I'm always sad when our visits end. I will see her in June when we go to DC so that is good.
My work disability carrier has approved my leave until 4/1. That is a relief to get taken care of. Hopefully I won't have a break in my paycheck.
I have had trouble sleeping..even with sleeping pills. I think it is the stomach sleeping thing. I have been able to flip over for about 2 hours but then I wake up really sore. So it is a catch 22 if I take the 2 hours to sleep well but hurt or not sleep more than 30-45 minutes at a time but not hurt after flipping over. So far, I've taken the 2 hours of sleep. I actually have a routine I do. 2 hours tummy, 1 hour left side, 1 hour right side, 2 hours tummy, 1 hour each side, etc. I cannot sleep on my back!
One thing I didn't really count on came last week. That was gas pains. When you have laproscopic surgery, they puff you full of CO2. Sooner or later, you have to pass that gas. Let's just say it is not pleasant at all. But I finally worked it out and am past the gas pains for the most part.
This week has been much more quiet which is probably good. Philip continues to help me daily. He stops by after school. I have people checking in on me which is really sweet. It has been good for me to establish a routine and work on being independent. I am able to sit up a little longer and getting up is easier this week.
So all is good here. I appreciate everyone's love and support. It means so much to me.
Wednesday, March 11, 2015
One week out - update
It is tough to believe a week ago I was trying to adjust to post surgery and not the happiest camper. I have made many great strides over the past week. By Sunday, I was cutting way back on the pain medications and my primary goal for the day was to poop (Sorry TMI). If you have ever taken narcotics and/or had abdominal surgery, your bowels come to a screeching stop. There comes a point that it is so uncomfortable. Luckily by Sunday night, I was able to "get things fixed".
Monday morning, the nurse called and said the pathology all came back negative for cancer which is what we expected but it is a relief to confirm. She was impressed I had cut back the pain pills and said they prefer I get off as quickly as possible. We switched over to Ibuprophen 800s to help with the discomfort. I found even with the Oxy, I hurt when I moved but with or without it, I was fine at rest. So I took my last one on Sunday night. This is great because now I can think more clearly and I'm not as dizzy. I can also resume my sleeping pills which means I can get through the night with good sleep again. All this together has done great things for me and how I feel overall.
I have less discomfort through the day. Night can be tough to find a comfortable sleeping position. I'm a stomach sleeper and that is just not ideal right now. Yesterday, I was able to shower myself without having Philip close by. I even drove the car today and got some lunch. It was nice to get out but I think that was a little aggressive of activity. I'm still taking long naps every day and making sure the couch and TV don't get lonely.
I've had a steady stream of love and support from my friends and family. My friends hooked me up with dinners through the weekend and start of the week. They each tried really hard to accommodate my new eating plan which I really appreciate. And they are great cooks!! Today Trudy, my house cleaner came and gave the house a cleaning 1...2. It is nice to have it all clean again. She had a hysterectomy a few years ago...unfortunately due to cancer so we chatted about that which is nice to talk to someone on the other side of it all.
Nola is coming into town late tonight. I can't wait to see her and she is going to continue to help me while I heal. Such a loving thing to do. So I am looking forward to that and more family visits through the weekend. Mom and Marsha are coming into town again this weekend. Dad and Cindy are coming over for dinner. I will see Mars and John too. So the love continues!
It has been really weird for me to not work. But I've done a great job staying away from it and letting it take care of itself. I really do need the time to heal and recover. I do anticipate going back to work after 4 weeks but if I am not ready, I can take more time.
I'm still wearing my beautiful white tummy binder. I can't imagine life without it honestly. My stomach is still really bloated and this thing isn't helping me feel trimmer but it is supporting my healing tummy and keeping it all together which I appreciate. Not sure how much longer I will feel I need it but I'm happy to have it for now.
So all is good here. I'm much better than a week ago and glad it is all in the past.
Monday morning, the nurse called and said the pathology all came back negative for cancer which is what we expected but it is a relief to confirm. She was impressed I had cut back the pain pills and said they prefer I get off as quickly as possible. We switched over to Ibuprophen 800s to help with the discomfort. I found even with the Oxy, I hurt when I moved but with or without it, I was fine at rest. So I took my last one on Sunday night. This is great because now I can think more clearly and I'm not as dizzy. I can also resume my sleeping pills which means I can get through the night with good sleep again. All this together has done great things for me and how I feel overall.
I have less discomfort through the day. Night can be tough to find a comfortable sleeping position. I'm a stomach sleeper and that is just not ideal right now. Yesterday, I was able to shower myself without having Philip close by. I even drove the car today and got some lunch. It was nice to get out but I think that was a little aggressive of activity. I'm still taking long naps every day and making sure the couch and TV don't get lonely.
I've had a steady stream of love and support from my friends and family. My friends hooked me up with dinners through the weekend and start of the week. They each tried really hard to accommodate my new eating plan which I really appreciate. And they are great cooks!! Today Trudy, my house cleaner came and gave the house a cleaning 1...2. It is nice to have it all clean again. She had a hysterectomy a few years ago...unfortunately due to cancer so we chatted about that which is nice to talk to someone on the other side of it all.
Nola is coming into town late tonight. I can't wait to see her and she is going to continue to help me while I heal. Such a loving thing to do. So I am looking forward to that and more family visits through the weekend. Mom and Marsha are coming into town again this weekend. Dad and Cindy are coming over for dinner. I will see Mars and John too. So the love continues!
It has been really weird for me to not work. But I've done a great job staying away from it and letting it take care of itself. I really do need the time to heal and recover. I do anticipate going back to work after 4 weeks but if I am not ready, I can take more time.
I'm still wearing my beautiful white tummy binder. I can't imagine life without it honestly. My stomach is still really bloated and this thing isn't helping me feel trimmer but it is supporting my healing tummy and keeping it all together which I appreciate. Not sure how much longer I will feel I need it but I'm happy to have it for now.
So all is good here. I'm much better than a week ago and glad it is all in the past.
Saturday, March 7, 2015
Post Surgery update
I'm a little foggy but wanted to try to give an update. Hopefully it makes sense! So Wednesday was the surgery. They did it "outpatient" which gives me 23 hours to get out of the hospital. Nothing like feeling the ticking of a clock!
I remember going into the operating room and looking around a bit but I was already given something to make me drowsy so I didn't get much time. They put the oxygen mask on my nose and then next thing I knew, I was in recover. I know I went in at 12:08 and when I could make out the clock in the recovery room it was 3:00. That is a long surgery! I woke up and didn't hurt but it wasn't long before I was nauseated....really nauseated. They started giving me something for that. As I was dry heaving, I really started feeling the pull in my abdomen. A little Dulotin helped with that but it I only lasts 30 minutes or so. I was brought up to my room throwing up the whole way but was relieved to see Mom and Dad there waiting for me.
They helped move quickly to cool off the room (it was hot as hell) and cool me down. After some drama of trying to figure out if the catheter was working properly, we settled in with some Morphine and I was feeling a little better. What I learned is pain makes me swear like a sailor. I'm pretty sure I tried to maintain a level of respect but there is no reason to be in $(#$*) pain and I let them know. Luckily at 7:00, there was a change in nursing staff and my night staff was very helpful. They explained what was going on and helped me get some food in me so I could switch off the Morphine and over to Percocet. They helped me deal with the catheter (I don't know that I've ever had one) and got me a belt for my stomach to help hold it together. They even got me out of bed to try walking because that helps pain too. Things settled down over night and I loved the nurses, Danalle and Tina. Tina and I shared out need for a straightened bed and she took good care of that. Danalle helped me with meds and crackers and helping me get on top of my care. By 7:00 am, I had a new daytime nurse and Becky that was the aid the night before. Becky was the sweetest woman ever. She came in and wanted to know what they figured out to help me. She really showed concern and caring for me. The other Nurse was excellent too but was quite busy. I spent a good part of the morning Thursday trying to get set up to go home. I had to make sure I could get out of bed and walk. I had to use the toilet and hopefully fart (which I didn't). I had some breakfast and lunch which both stayed down okay so I took a nap and left about 2:30 in the afternoon.
After coming home, it all seems a blur. They gave me Oxycodone to manage the pain but it makes me dizzy and sick so we tried Lortab but that wasn't doing much to help the pain. So I am back on a 1/2 dose of Oxycodone and seem to be managing better with that. I sleep spontaneously. I can't seem to keep my mind on a TV show. In fact, I'm pretty sure I could just keep watching the same ones over and over. I've been really hurting since yesterday. I'm having a tough time getting off the couch or out of bed. In fact, Philip has been picking me up off the couch each time. I woke up wise yesterday morning and logged into Amazon and express shipped some couch risers to use. They came this afternoon and it has been night and day difference. I can get off the couch now with minimal problems.
This afternoon, my friend Lesley brought be a big pan of Olive Garden soup and fresh bread. She brought me magazines and a very pretty flowering plant. Mom, Marsha, and Dad have been helping me through yesterday but Philip took over today. Philip has been great about keeping track of my medication times, cleaning up messes I make, feeding me, doing dishes, running errands, and keeping track of everything. He really has stepped up to help.
I have a bunch of beautiful flowers people have given me. I am surrounded by love and support. I think I can expect to hurt for a few more days. I'm working on managing that the best I can. I hope it will keep getting better each day.
One of these days, I will spring off this lovely white girdle and be able to stand upright without hurting. But for now, I'm making it through day by day.
I'm doing good. The surgery went well from what I understand. Mom talked to the doctor after. He said I had fibroids both internally and on the outside. I also still had the ovarian cyst and my uterus was huge. Not sure what that means. I should have pathology reports next week. I'm glad I had the surgery and feel very positive it was the right thing to do.
Thanks everyone for your love and support.
I remember going into the operating room and looking around a bit but I was already given something to make me drowsy so I didn't get much time. They put the oxygen mask on my nose and then next thing I knew, I was in recover. I know I went in at 12:08 and when I could make out the clock in the recovery room it was 3:00. That is a long surgery! I woke up and didn't hurt but it wasn't long before I was nauseated....really nauseated. They started giving me something for that. As I was dry heaving, I really started feeling the pull in my abdomen. A little Dulotin helped with that but it I only lasts 30 minutes or so. I was brought up to my room throwing up the whole way but was relieved to see Mom and Dad there waiting for me.
They helped move quickly to cool off the room (it was hot as hell) and cool me down. After some drama of trying to figure out if the catheter was working properly, we settled in with some Morphine and I was feeling a little better. What I learned is pain makes me swear like a sailor. I'm pretty sure I tried to maintain a level of respect but there is no reason to be in $(#$*) pain and I let them know. Luckily at 7:00, there was a change in nursing staff and my night staff was very helpful. They explained what was going on and helped me get some food in me so I could switch off the Morphine and over to Percocet. They helped me deal with the catheter (I don't know that I've ever had one) and got me a belt for my stomach to help hold it together. They even got me out of bed to try walking because that helps pain too. Things settled down over night and I loved the nurses, Danalle and Tina. Tina and I shared out need for a straightened bed and she took good care of that. Danalle helped me with meds and crackers and helping me get on top of my care. By 7:00 am, I had a new daytime nurse and Becky that was the aid the night before. Becky was the sweetest woman ever. She came in and wanted to know what they figured out to help me. She really showed concern and caring for me. The other Nurse was excellent too but was quite busy. I spent a good part of the morning Thursday trying to get set up to go home. I had to make sure I could get out of bed and walk. I had to use the toilet and hopefully fart (which I didn't). I had some breakfast and lunch which both stayed down okay so I took a nap and left about 2:30 in the afternoon.
After coming home, it all seems a blur. They gave me Oxycodone to manage the pain but it makes me dizzy and sick so we tried Lortab but that wasn't doing much to help the pain. So I am back on a 1/2 dose of Oxycodone and seem to be managing better with that. I sleep spontaneously. I can't seem to keep my mind on a TV show. In fact, I'm pretty sure I could just keep watching the same ones over and over. I've been really hurting since yesterday. I'm having a tough time getting off the couch or out of bed. In fact, Philip has been picking me up off the couch each time. I woke up wise yesterday morning and logged into Amazon and express shipped some couch risers to use. They came this afternoon and it has been night and day difference. I can get off the couch now with minimal problems.
This afternoon, my friend Lesley brought be a big pan of Olive Garden soup and fresh bread. She brought me magazines and a very pretty flowering plant. Mom, Marsha, and Dad have been helping me through yesterday but Philip took over today. Philip has been great about keeping track of my medication times, cleaning up messes I make, feeding me, doing dishes, running errands, and keeping track of everything. He really has stepped up to help.
I have a bunch of beautiful flowers people have given me. I am surrounded by love and support. I think I can expect to hurt for a few more days. I'm working on managing that the best I can. I hope it will keep getting better each day.
One of these days, I will spring off this lovely white girdle and be able to stand upright without hurting. But for now, I'm making it through day by day.
I'm doing good. The surgery went well from what I understand. Mom talked to the doctor after. He said I had fibroids both internally and on the outside. I also still had the ovarian cyst and my uterus was huge. Not sure what that means. I should have pathology reports next week. I'm glad I had the surgery and feel very positive it was the right thing to do.
Thanks everyone for your love and support.
Monday, March 2, 2015
What's new?
I know many of you are curious how I am doing. So this is a quickie post to let you know I am doing okay. Last week, my arms quit hurting so bad which was very welcome. I had my CK (measures my muscle injury) today and it has gone down 110 points to 340. It is still above normal but I think that means the Methotrexate is starting to work. Probably why my arms aren't hurting so much.
I think I am all ready for surgery. Mom came up today because it is supposed to snow tomorrow. I'm glad she is here and we are set to go. I called the insurance and that is all set. My paperwork is into HR for my leave. Tomorrow I will wrap up my tasks at work the best I can and hand them off to my boss.
I haven't finished laundry. I haven't stocked the freezer. I haven't cleaned the pantry so my family doesn't see my huge food messes. But it is okay. It is times like this that I need to start working by priorities. And my top priority is to get my mind straight and enter surgery relaxed and positive. I know I am in good hands and it will all work out. I have an entire circle of close friends and family who are praying for me and are there to help me as needed. And I totally appreciate each of you.
I'm not sure how quickly I will blog again but I will drop a note as soon as I can. See you on the uterus free flip side!
I think I am all ready for surgery. Mom came up today because it is supposed to snow tomorrow. I'm glad she is here and we are set to go. I called the insurance and that is all set. My paperwork is into HR for my leave. Tomorrow I will wrap up my tasks at work the best I can and hand them off to my boss.
I haven't finished laundry. I haven't stocked the freezer. I haven't cleaned the pantry so my family doesn't see my huge food messes. But it is okay. It is times like this that I need to start working by priorities. And my top priority is to get my mind straight and enter surgery relaxed and positive. I know I am in good hands and it will all work out. I have an entire circle of close friends and family who are praying for me and are there to help me as needed. And I totally appreciate each of you.
I'm not sure how quickly I will blog again but I will drop a note as soon as I can. See you on the uterus free flip side!
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