It is late Sunday night and I have been thinking. The last few evenings I have experienced moderate anxiety; pretty much at the same interval each night. The thinker that I am, I am trying to figure out why. My circumstances haven't changed from a week ago. Well, I get to work again. But that's a good thing. At least to me it is. I did change my meds taking time. I used to take my daily meds in the morning. Lately, I've been taking them in the evening. Right around the time I am feeling this anxiety. Now one of the meds I am on is Prozac. I am not ashamed to acknowledge it. I take it not for depression, but rather for anxiety. It is a med provided by doctors for women who experience moderate to severe PMDD - or at least it was when it was first prescribed to me. And though I've tried a few other meds, I find that Prozac really does keep me from going overboard on the stress train.
It being Sunday, I have also been reading my Bible. I was brought up in a religiously mixed home, so I am not sure that I would call myself really religious. However, I am Christian. When I am stressed or something heavy is sitting on my heart I find comfort in the Bible. It really is a handbook for living.
So, why do I get this pervasive sense of stress lately right around 7 PM? The only way I can describe is is that I feel as though I should be doing something and I feel lazy because I am not. And when I read the sentence I just wrote I realize this is how I've been living my life for the past 19 years. Needing to be busy, to do something, so I can say I am contributing to the family, to society, to something. And I think. Maybe my brain and body don't know how to cope with this forced hiatus. Yes, the first few weeks were ok. But now that I am feeling better - though I am not mobile and have not yet started radiation - my brain thinks I need to 'do something'.
But do I? I mean. Do I need to be so busy I have no time for me? It seems that is all I've had time for these last few weeks. Yes, I've been bored, but that is because it has been so long since I've had time for me that I don't know what to do for me. And perhaps my body is guilting me into getting busy again. But I don't know. I don't really want to be so busy I'm constantly tired, sleep-deprived, stressed about the lack of time to do anything, etc. What I really need to do is to figure out what I can and would like to do for me and then to actually do it.
It sounds strange doesn't it. I have to learn how to enjoy having time for myself again. I just wish the anxiety would settle down for a bit.
Monday, August 29, 2011
Wednesday, August 24, 2011
Questions, Questions, Questions!
I do not enjoy being house-bound. I miss my coworkers. I miss being busy at work. I miss going to the store. I miss fast food. I miss just going into the kitchen, cooking something and carrying it to the living room!
I've been exercising my leg, flexing and stretching to get that scar tissue moving. I get the knee moving easily for about 15 minutes, then an hour later I have to start all over again. And I mean start all over again. It's like I never even stretched it at the first. I am sure the flexibility is much improved from when I first flexed it, but it's all relative to me. I only know it is stiff once again and I get to stretch it once more.
The STD (Short-Term Disability) provider called yesterday and they are anxious for me to get back to work. Oh, I know. They want to spend as little of their money as necessary. But geez! They have already bumped my 'back to work' date up by a week. I'm a bit frazzled. That's next Monday! I called and talked to the PA (Physician's Assistant) who is working with me and talked to her about all this. If I were out having another baby I would know what to expect and when I'd be able to go back to work and how my body would be feeling, but this is all new. I certainly don't want to experience a leave of absence due to this, or any other, cancer more than once.
Naturally, the PA was a bit miffed; not with me but with the STD provider. The doctors determine when I can return, not the STD providers. And I'm good with that! But I do know working would help me not only financially but also mentally. The surgeon's office is good with me going back to work part-time. They - and I - want to be sure this leg heals properly and the radiation and physical affects are handled properly. Granted, I won't have to suffer the side effects of Chemotherapy, but dayum! We're talking about my leg here! And I want to be as mobile as I can be after all this is said and done! And from what I understand, there is more, lots more, scar tissue to come.
So, it looks like I'll be heading back to work part-time on Monday - from home. I already talked to my boss and I'll be provided with a company laptop so I can work 4 hours a day at home. That works for me! I can't drive. My place of employment is 20 miles/40 minutes from home. My husband works about 15 miles from home, and to get him to cart me around for work - and then to add daily radiation on top of that - is a lot. When I say a lot, I mean a lot in respect to his time away from work, gas, impact on the truck, etc. etc. But before it's official, we have to get the paperwork lined up, signed and submitted. And I'll be doing that tomorrow.
I have to admit that I am a bit apprehensive. I am afraid that working from home will hinder my ability to contribute to the workload. I mean, I'm a lead developer on a current project. There's a lot of research and design to get done. Will I be as productive at home as I am in the workplace? I hope so! I have to be! Not only that, but when radiation begins, will I need more time off to handle any ill effects?
As for the radiation, I found out Tuesday that my simulation (otherwise called 'fitting') is scheduled for September 6; week after next. I will be getting an IV contrast CT scan which will pinpoint where the radiation will be applied. Another IV. Ugh. But once that's done, I can start the radiation. And the sooner the better! But then that leads to more questions. How do I pay for this? Will I have a copay every day? Do I have to pre-pay? What if I don't have the funds? Can I still get the radiation?
This all bites. But it's all in the present. Ten years from now I'll look back and understand how much of this didnt need all the stress I'm creating for myself. But for now, since I don't know, and I don't know what or how to ask my questions, this is where I am.
So, today, I am a bit pensive. I hope my mood improves with the coming weekend - as long as I don't go stir-crazy from cabin fever!
I've been exercising my leg, flexing and stretching to get that scar tissue moving. I get the knee moving easily for about 15 minutes, then an hour later I have to start all over again. And I mean start all over again. It's like I never even stretched it at the first. I am sure the flexibility is much improved from when I first flexed it, but it's all relative to me. I only know it is stiff once again and I get to stretch it once more.
The STD (Short-Term Disability) provider called yesterday and they are anxious for me to get back to work. Oh, I know. They want to spend as little of their money as necessary. But geez! They have already bumped my 'back to work' date up by a week. I'm a bit frazzled. That's next Monday! I called and talked to the PA (Physician's Assistant) who is working with me and talked to her about all this. If I were out having another baby I would know what to expect and when I'd be able to go back to work and how my body would be feeling, but this is all new. I certainly don't want to experience a leave of absence due to this, or any other, cancer more than once.
Naturally, the PA was a bit miffed; not with me but with the STD provider. The doctors determine when I can return, not the STD providers. And I'm good with that! But I do know working would help me not only financially but also mentally. The surgeon's office is good with me going back to work part-time. They - and I - want to be sure this leg heals properly and the radiation and physical affects are handled properly. Granted, I won't have to suffer the side effects of Chemotherapy, but dayum! We're talking about my leg here! And I want to be as mobile as I can be after all this is said and done! And from what I understand, there is more, lots more, scar tissue to come.
So, it looks like I'll be heading back to work part-time on Monday - from home. I already talked to my boss and I'll be provided with a company laptop so I can work 4 hours a day at home. That works for me! I can't drive. My place of employment is 20 miles/40 minutes from home. My husband works about 15 miles from home, and to get him to cart me around for work - and then to add daily radiation on top of that - is a lot. When I say a lot, I mean a lot in respect to his time away from work, gas, impact on the truck, etc. etc. But before it's official, we have to get the paperwork lined up, signed and submitted. And I'll be doing that tomorrow.
I have to admit that I am a bit apprehensive. I am afraid that working from home will hinder my ability to contribute to the workload. I mean, I'm a lead developer on a current project. There's a lot of research and design to get done. Will I be as productive at home as I am in the workplace? I hope so! I have to be! Not only that, but when radiation begins, will I need more time off to handle any ill effects?
As for the radiation, I found out Tuesday that my simulation (otherwise called 'fitting') is scheduled for September 6; week after next. I will be getting an IV contrast CT scan which will pinpoint where the radiation will be applied. Another IV. Ugh. But once that's done, I can start the radiation. And the sooner the better! But then that leads to more questions. How do I pay for this? Will I have a copay every day? Do I have to pre-pay? What if I don't have the funds? Can I still get the radiation?
This all bites. But it's all in the present. Ten years from now I'll look back and understand how much of this didnt need all the stress I'm creating for myself. But for now, since I don't know, and I don't know what or how to ask my questions, this is where I am.
So, today, I am a bit pensive. I hope my mood improves with the coming weekend - as long as I don't go stir-crazy from cabin fever!
Monday, August 22, 2011
More of the Above
School starts tomorrow. Ad for the first time in my childrens' lives I could not take them shopping. Instead I sat at home while DH and Chris did some abbreviated shopping today. Gabriel's bookbag is packed and his bus driver finally called to let us know what time to expect them.
Other than that, the weekend has been quiet. I've been flexing the leg periodically and the pain is slowly receding. The flexibility is even more slowly coming back. What I'm battling now is the so very dry skin surrounding the sutures. My leg is dry! I oil it up with excema lotion and 30 minutes later the skin is flaking off. But I get the impression is is just the tip of the iceberg and that I have more of this to look forward to.
I talked to a couple friends this weekend about their experiences with radiation. Both of them are breast cancer survivors and both had radiation. They both shared the same experiences; that radiation therapy compounded the scar tissue incurring lumps and bumps. What this leads me to understand is that radiation will, as the doctors indicated, add more scar tissue to my knee. But it will be more significant or substantial than I probably already anticipate.
And then there was the unpleasant surprise that the mortgage check was returned for NSF. Ugh. The added expenses this month for doctor appointments, tests, and so on are already putting a strain on the purse strings. And my short-term disability does not bring in near as much as my regular paycheck. So, for the next month, things are looking a little bleak. This is encouraging me to get back to work as soon as I can; cancer or no.
In the meantime, I am keeping my days busy with beading, book reading, TV watching...
Other than that, the weekend has been quiet. I've been flexing the leg periodically and the pain is slowly receding. The flexibility is even more slowly coming back. What I'm battling now is the so very dry skin surrounding the sutures. My leg is dry! I oil it up with excema lotion and 30 minutes later the skin is flaking off. But I get the impression is is just the tip of the iceberg and that I have more of this to look forward to.
I talked to a couple friends this weekend about their experiences with radiation. Both of them are breast cancer survivors and both had radiation. They both shared the same experiences; that radiation therapy compounded the scar tissue incurring lumps and bumps. What this leads me to understand is that radiation will, as the doctors indicated, add more scar tissue to my knee. But it will be more significant or substantial than I probably already anticipate.
And then there was the unpleasant surprise that the mortgage check was returned for NSF. Ugh. The added expenses this month for doctor appointments, tests, and so on are already putting a strain on the purse strings. And my short-term disability does not bring in near as much as my regular paycheck. So, for the next month, things are looking a little bleak. This is encouraging me to get back to work as soon as I can; cancer or no.
In the meantime, I am keeping my days busy with beading, book reading, TV watching...
Thursday, August 18, 2011
Three Cheers For Healing!
Woo hoo! I may be a bit naughty by nature, but I certainly do my best to be a stellar patient. And it has certainly paid off! Today was my two week post-op appointment, and Dr. Berrey was very pleased with the healing process. So pleased, in fact, that I am now out of the leg immobilizer; earlier than anticipated! But now comes the really hard part - regaining flexibility/mobility. Periodically, thoughout the day, I have to flex my leg. Bend it to 90 degrees, then push it a little bit more. Hold it, then straighten it - and do that a little bit more. Hold it, then bend it. And repeat. And I also get to start the (drumrole please) sliding squats! Granted, my squat will not be anywhere close to perfect, but it is the mobility that is important.
And that is what was impressed upon me at the appointment. Mobility is critical at this point. Strength will come in time. In Dr. Berrey's words, "radiation is not your friend." When I asked why I learned that radiation will build additional scar tissue over the already existing scar tissue attained from the surgery. And any new scar tissue reduces mobility. So, I need to have as much mobility as possible before radiation so the impact from radiation is minimal.
I tell you, though. Bending a knee that a) has been straight for 15 days, b) is missing a significant chunk, and c) has a lovely vertical seven inch scar is not easy. Dr. Berry gently assisted my leg in coming to a 100 degree bend three times. O.M.G. Sweat beads were popping all overy my head. My stomach, which was thankfully empty, roiled. The scar tissue resisted and popped when resistence was futile. And I couldn't help but groan - part from pain and part from fear. I am told it will get easier. And I have no choice but to believe it. But when I bend it, as I have done in the last 30 minutes, it is still very rough. I am thankful to have a fair bit of painkillers left.
An upgrade in the healing process also means I am that much closer to going back to work. And I am not opposed to that. Being home sounds nice and relaxing. But it is so not the case when you can't get around and have to rely on others to even carry a glass of water from the kitchen to the couch. I am hoping that in a week or so I may be able to use the leg enough so I can drive myself. My next doctor appointment is in two weeks, but if I am up to it I'll be asking for at least a partial release before then.
On a not so great note, DD is going in for some tests for fatigue and malaise. So, the doctor bills continue. I anticipate a good three to five years to pay off the medical bills. And I hope that is an overestimate. I still don't know the cost of radiation and I am a bit nervous. My change in insurance at the new year has been working in my favor so far. I only hope it continues to hold up.
(Several hours later...) Healing from surgery is child's play compared to regaining mobility!!!! Swelling and pain are to be expected, and are in fact present and accounted for!
And that is what was impressed upon me at the appointment. Mobility is critical at this point. Strength will come in time. In Dr. Berrey's words, "radiation is not your friend." When I asked why I learned that radiation will build additional scar tissue over the already existing scar tissue attained from the surgery. And any new scar tissue reduces mobility. So, I need to have as much mobility as possible before radiation so the impact from radiation is minimal.
I tell you, though. Bending a knee that a) has been straight for 15 days, b) is missing a significant chunk, and c) has a lovely vertical seven inch scar is not easy. Dr. Berry gently assisted my leg in coming to a 100 degree bend three times. O.M.G. Sweat beads were popping all overy my head. My stomach, which was thankfully empty, roiled. The scar tissue resisted and popped when resistence was futile. And I couldn't help but groan - part from pain and part from fear. I am told it will get easier. And I have no choice but to believe it. But when I bend it, as I have done in the last 30 minutes, it is still very rough. I am thankful to have a fair bit of painkillers left.
An upgrade in the healing process also means I am that much closer to going back to work. And I am not opposed to that. Being home sounds nice and relaxing. But it is so not the case when you can't get around and have to rely on others to even carry a glass of water from the kitchen to the couch. I am hoping that in a week or so I may be able to use the leg enough so I can drive myself. My next doctor appointment is in two weeks, but if I am up to it I'll be asking for at least a partial release before then.
On a not so great note, DD is going in for some tests for fatigue and malaise. So, the doctor bills continue. I anticipate a good three to five years to pay off the medical bills. And I hope that is an overestimate. I still don't know the cost of radiation and I am a bit nervous. My change in insurance at the new year has been working in my favor so far. I only hope it continues to hold up.
(Several hours later...) Healing from surgery is child's play compared to regaining mobility!!!! Swelling and pain are to be expected, and are in fact present and accounted for!
Tuesday, August 16, 2011
Family Dynamics
Chris is going culinary! Now that Mom and Dad are back in Texas it is up to Chris and Rufus to provide meals. To that effect, this is Chris's chance to exercise his culinary chops. He loves reading cookbooks but up to now has lacked the self-assurance to actually cook without assistance. Last night he made penne pasta with a bell pepper/tomato sauce and turkey sausage. Yum! It was delicious! And he made grilled asparagus with orange sauce tonight. Double yum! So, my physical limitations have forced Chris into the kitchen. Who knows. We may have the next Master Chef in the kitchen!
DD (Dear Daughter, Cassie) is home tonight. She's been complaining of light-headedness and dizziness lately. When she went into Solantic her BP kept skyrocketing when she sat up (as opposed to laying down). The doctor there wanted her to go to the ER, but Cassie refused. So, she'll be going to her GP tomorrow. Thank God Rufus has FMLA. He will be able to take her during the day. I just hope it isn't anything too serious. One serious illness at a time is more than enough for this family.
Cassie will likely also be moving back home the first of the month. Methinks her primary motivation is that she will have wheels - my wheels - for the price of insurance and gas. Me hopes some of the motivating factors include the stability of home and nearness of her family. Cassie knows her presence in the house will be very helpful. If she lives at home she will be able to take me to appointments, run errands, and the like. DH and I just don't want our relationship with her to degrade to the point it did before she moved out; constant push-back fraught with heated words and a pervading tenseness. In other words, we need for her to understand that we rule the roost and she can go anytime she, or we, please. The hope is that Cassie moves in so she can go to school and get her head on straight surrounded by people who only want her happiness. Yes, she will have to abide by our rules, but is it no different from how she lives now? No transportation, no friends, people only wanting money and a 'party atmosphere'. I am sure she sees it a bit differently, but as I keep reminding her, friends come and go but family is forever. We will always have her back.
Not much more to report tonight. Next appointment is Thursday. What a learning experience!
Signing off...
DD (Dear Daughter, Cassie) is home tonight. She's been complaining of light-headedness and dizziness lately. When she went into Solantic her BP kept skyrocketing when she sat up (as opposed to laying down). The doctor there wanted her to go to the ER, but Cassie refused. So, she'll be going to her GP tomorrow. Thank God Rufus has FMLA. He will be able to take her during the day. I just hope it isn't anything too serious. One serious illness at a time is more than enough for this family.
Cassie will likely also be moving back home the first of the month. Methinks her primary motivation is that she will have wheels - my wheels - for the price of insurance and gas. Me hopes some of the motivating factors include the stability of home and nearness of her family. Cassie knows her presence in the house will be very helpful. If she lives at home she will be able to take me to appointments, run errands, and the like. DH and I just don't want our relationship with her to degrade to the point it did before she moved out; constant push-back fraught with heated words and a pervading tenseness. In other words, we need for her to understand that we rule the roost and she can go anytime she, or we, please. The hope is that Cassie moves in so she can go to school and get her head on straight surrounded by people who only want her happiness. Yes, she will have to abide by our rules, but is it no different from how she lives now? No transportation, no friends, people only wanting money and a 'party atmosphere'. I am sure she sees it a bit differently, but as I keep reminding her, friends come and go but family is forever. We will always have her back.
Not much more to report tonight. Next appointment is Thursday. What a learning experience!
Sunday, August 14, 2011
Humdrum Sunday
It's Sunday night. Another quiet day. I am glad to say that when DH changed the bandages today the bruising that was apparent Friday was almost all gone. So, taking it easy for two days really did pay off.
Weekends are tough when you can't get around. There's no structure. During the week we have work, school, and the like. And we have to be up at a certain time and go to bed too. But on the weekend, the weekday guidelines don't necessarily apply and it can get slow, almost boring. What I'd like to do is some needlework or beadwork. But it's difficult doing beadwork on your lap. So, I play on my iPod, read, watch T.V. and nap.
Tomorrow is my first day alone with the boys and while Chris is 17 and can help, I'm afraid it may not be enough. I'm afraid Gabriel won't get the redirection and attention he needs. And I worry that he won't eat properly even with me at home - because I can't get up or get around much.
My next appt is Thursday and while one part of me hopes I will be given the green light to start flexing my leg, another part of me hopes it is still too soon. That scare that I may have popped some of the internal stitches is still very real, and I fear having to get more stitches. Not fun. So, we'll see.
I am coming up with the grocery list for the week, and I am finding I having to be very specific about what I want the boys to buy. For example, we need a loaf of bread. So, I have to stipulate that it is to be Nature's Own Honey Wheat bread. That way we don't get whole grain which the boys won't touch. The same with the toaster waffles - Eggo Homestyle. And I am also finding it difficult to keep asking Chris for help. I don't want to keep him from what it is he's doing, but at the same time I really need the help. It is so difficult being bed-bound and dependent on others. I know this is God's way of slowing me down. So, I will accept it.
Anyhoo. Tired tonight. Signing off.
Weekends are tough when you can't get around. There's no structure. During the week we have work, school, and the like. And we have to be up at a certain time and go to bed too. But on the weekend, the weekday guidelines don't necessarily apply and it can get slow, almost boring. What I'd like to do is some needlework or beadwork. But it's difficult doing beadwork on your lap. So, I play on my iPod, read, watch T.V. and nap.
Tomorrow is my first day alone with the boys and while Chris is 17 and can help, I'm afraid it may not be enough. I'm afraid Gabriel won't get the redirection and attention he needs. And I worry that he won't eat properly even with me at home - because I can't get up or get around much.
My next appt is Thursday and while one part of me hopes I will be given the green light to start flexing my leg, another part of me hopes it is still too soon. That scare that I may have popped some of the internal stitches is still very real, and I fear having to get more stitches. Not fun. So, we'll see.
I am coming up with the grocery list for the week, and I am finding I having to be very specific about what I want the boys to buy. For example, we need a loaf of bread. So, I have to stipulate that it is to be Nature's Own Honey Wheat bread. That way we don't get whole grain which the boys won't touch. The same with the toaster waffles - Eggo Homestyle. And I am also finding it difficult to keep asking Chris for help. I don't want to keep him from what it is he's doing, but at the same time I really need the help. It is so difficult being bed-bound and dependent on others. I know this is God's way of slowing me down. So, I will accept it.
Anyhoo. Tired tonight. Signing off.
A Downer of a Day
Mom and Dad left this morning. I was really sad to see them go but I know they need to go home. It is a downer because I miss them already and I know DH won't be able to give me the level of care I need right now and that my parents provided.
It is amazing how quickly everything has gone back to 'pre-mom-and-dad'. DH slept all day as did I. Gabriel watched a lot of TV, and there's not much in the house that can be pulled off the shelf and eaten. I am committed to staying in bed and on the couch, which means no cooking. So, the poor guy was eating cereal all day. Both DH and Chris work tomorrow and I am hoping they work it out so I'm not alone with Gabriel. I won't be able to do much of anything and he can be demanding.
So, the plan for tomorrow is hope for the best and hope to handle less than the best.
Signing off.
It is amazing how quickly everything has gone back to 'pre-mom-and-dad'. DH slept all day as did I. Gabriel watched a lot of TV, and there's not much in the house that can be pulled off the shelf and eaten. I am committed to staying in bed and on the couch, which means no cooking. So, the poor guy was eating cereal all day. Both DH and Chris work tomorrow and I am hoping they work it out so I'm not alone with Gabriel. I won't be able to do much of anything and he can be demanding.
So, the plan for tomorrow is hope for the best and hope to handle less than the best.
Signing off.
Friday, August 12, 2011
Slow Down
Yesterday was a busy day, relatively speaking. And today my body told me in no uncertain terms to s-l-o-w- d-o-w-n. The only thing I did today was take a shower. Yes, a shower. I sat on the bathing chair and let the water stream over me. And while it should have been a wonderful feeling, I had no idea how difficult it would be keeping my leg stiff while bathing. Without the immobilizer, it is bloody hard keeping one's leg straight! I anchored my leg using my toes on the shower wall, but my good leg was shaking from the strain of hold the brunt of the weight while I was twisting and turning getting rid of 10 days of accumulated grime. When I got out Mom had to help me with my robe and I went straight to the bed.
I needed to change the bandage, but when I went to take it off, it stuck to the steri-strips that criss-cross the sutures. After a call to the doctor, DH went over and picked up some more steri-strips. Taking the bandage then should have been easy. But the bandage also stuck to my not so short leg hair. Ouch! The sutures were also ozzing a bit. Poor Rufus was so afraid of hurting me. I just lay back and shut my eyes. I didn't feel a thing while he ever so slowly took the steri-strips off. He was stressed! Putting the new steri-strips was no walk in the park for him either. He was very aware that any contact with anything other than my skin could contaminate the wound. We then covered the strips with gauze pads - no sticky stuff please - and on went the ace bandage.
One thing I did notice was the dent in my leg was bruised. When I got out of the car yesterday my bad knee popped. So, I'm not sure if I broke any of the internal sutures. So, for the remainder of the weekend I am either on the bed or on the couch. I am so not going anywhere or doing anything! It was funny. Yesterday at the doctor's office, the last thing Dr. Berrey said to me was 'Be a good girl. But for you, I think that isn't so easy!' LOL - He has me pegged! So, no activity. I want the leg to heal properly so I can start radiation. The sooner the better.
On a sad note, Mom and Dad are leaving in the morning. It has been 10 days, and they need to get back. While I totally understand that on a logical and practical level, emotionally....
I am so glad they took time to come. They've been such a help with the family, most especially helping me. Especially since the news was good, now is a choice time for them to go. And we need to learn to get along without their assistance. I will miss them immensely. It has been so wonderful having them here. There is nothing like being under your parents' care. It's like being a little girl again.
So, tomorrow, after Mom and Dad leave, I must must must keep off my foot. Gotta heal heal heal so I can start treatment. And no better time to start than to get to bed. So, good night and sweet dreams.
I needed to change the bandage, but when I went to take it off, it stuck to the steri-strips that criss-cross the sutures. After a call to the doctor, DH went over and picked up some more steri-strips. Taking the bandage then should have been easy. But the bandage also stuck to my not so short leg hair. Ouch! The sutures were also ozzing a bit. Poor Rufus was so afraid of hurting me. I just lay back and shut my eyes. I didn't feel a thing while he ever so slowly took the steri-strips off. He was stressed! Putting the new steri-strips was no walk in the park for him either. He was very aware that any contact with anything other than my skin could contaminate the wound. We then covered the strips with gauze pads - no sticky stuff please - and on went the ace bandage.
One thing I did notice was the dent in my leg was bruised. When I got out of the car yesterday my bad knee popped. So, I'm not sure if I broke any of the internal sutures. So, for the remainder of the weekend I am either on the bed or on the couch. I am so not going anywhere or doing anything! It was funny. Yesterday at the doctor's office, the last thing Dr. Berrey said to me was 'Be a good girl. But for you, I think that isn't so easy!' LOL - He has me pegged! So, no activity. I want the leg to heal properly so I can start radiation. The sooner the better.
On a sad note, Mom and Dad are leaving in the morning. It has been 10 days, and they need to get back. While I totally understand that on a logical and practical level, emotionally....
I am so glad they took time to come. They've been such a help with the family, most especially helping me. Especially since the news was good, now is a choice time for them to go. And we need to learn to get along without their assistance. I will miss them immensely. It has been so wonderful having them here. There is nothing like being under your parents' care. It's like being a little girl again.
So, tomorrow, after Mom and Dad leave, I must must must keep off my foot. Gotta heal heal heal so I can start treatment. And no better time to start than to get to bed. So, good night and sweet dreams.
Little C
Today I want to open by remembering a good man, co-worker, husband and father. Gary Schriver, a man I worked with for 18 years, died August 5th from bone cancer. He fought a hard a valiant fight for two years. He now watches over his wife and three daughters from Heaven.
My friend Kim is a Godsend! She took Gabriel yesterday for the afternoon which stretched into an overnight stay through the afternoon. He so needed the break as did my parents. And Kim's family kept him so busy he was almost sleep-walking when he came home. Thank you Kim and family!
Today was 1) the post-operative appointment with Dr. Berrey (surgeon) and 2) the consultation with Dr. Indelicato (Radiologist). The consult appt was first, but I'll start with the post-op appt.
The knee, she is healing well. I can now take a shower! Meaning I can now get my leg wet. Oh, what joy! The knee must still stay in the immobilizer. It appeared there might be a slight infection at one point on the suture line, so I am on antibiotics for the week. Final diagnosis? Malignant Giant Cell Tumor of the Tendon Sheath. The tumor was removed, and the margins are good (relatively speaking given where it was located). Dr. Berrey's recommendation? Radiation. Why? To ensure that any residual cancer cells are eradicated. Here's the deal. When a soft tissue tumor is removed it is good practice to remove at least 1-3 cm of the surrounding soft tissue. This is to be sure all the tumor cells are removed. The problem is that there isn't much soft tissue in the knee. Even 1 cm is hard to find in the knee. So, while the margins, what could be managed in the knee, are good, it is possible some of the tumor cells were left behind. So, better safe than sorry.
When we met with Dr. Indelicato regarding radiation, he said there are two approaches; a) Observation with MRI/CT scans every 3 months, and b) Radiation. The pro about observation is that it is possible all the cancer was removed and no additional action is necessary - no radiation, etc. The con is that if the cancer returns it means radiation and possibly additional surgery. The pro about radiation is that we minimize the likelihood of the cancer returning. The con is that there are risks - skin issues during and after radiation, more fragile femur and tibia (leading to breaks), arthritis, additional scar tissue limiting mobility. Mom asked a very good question; what is the likelihood of the cancer returning with and without radiation. Dr. Indelicato's response pretty much made my decision. Without radiation, there is a 50% chance the cancer will return in the same or a different place. With radiation, that goes down to 5-10%.
I had already been leaning towards radiation, but that pretty much sealed it. Then when Dr. Berrey also recommended radiation, there was no doubt in my mind. I'll take the risks, none of which are guaranteed, to minimize the risk of the cancer coming back, which is also not guaranteed. What do I have to lose? Time and money. What do I have to gain? A longer, cancer-free life.
So, I'll be getting an appt in about two weeks for my set-up appt. This is when I get a CT scan which will determine the radiation boundaries, establish the exact positioning of my body for radiation, and determine the radiation course that is best for me. My radiation will begin mid-September and continue for five weeks, five days a week, roughly one hour a day. I likely will not be getting the more desirable Proton Therapy treatment. The treatment runs into the six digits in cost. And in the words of Dr. Indelicato, Proton Therapy is reserved for folks with 'big C'. Meaning, my cancer is 'little C'.
'Little C'. Does anyone have any idea how heavenly those two small words are? I have 'little C'. I have cancer. But it's not life-threatening. It is more of an expensive side trip. It is incredible what an impact the words 'little C' had not only on me but also my parents and DH. You could literally see the little stress bubbles above everyone's head popping out of existence. 'Little C'. How nice to only have 'little C'. I have a long life ahead of me and though I was hopeful that was indeed the case, it is wonderful that by putting me in the 'little C' column, the doctors have confirmed that indeed I do have a long life to look forward to.
My friend Kim is a Godsend! She took Gabriel yesterday for the afternoon which stretched into an overnight stay through the afternoon. He so needed the break as did my parents. And Kim's family kept him so busy he was almost sleep-walking when he came home. Thank you Kim and family!
Today was 1) the post-operative appointment with Dr. Berrey (surgeon) and 2) the consultation with Dr. Indelicato (Radiologist). The consult appt was first, but I'll start with the post-op appt.
The knee, she is healing well. I can now take a shower! Meaning I can now get my leg wet. Oh, what joy! The knee must still stay in the immobilizer. It appeared there might be a slight infection at one point on the suture line, so I am on antibiotics for the week. Final diagnosis? Malignant Giant Cell Tumor of the Tendon Sheath. The tumor was removed, and the margins are good (relatively speaking given where it was located). Dr. Berrey's recommendation? Radiation. Why? To ensure that any residual cancer cells are eradicated. Here's the deal. When a soft tissue tumor is removed it is good practice to remove at least 1-3 cm of the surrounding soft tissue. This is to be sure all the tumor cells are removed. The problem is that there isn't much soft tissue in the knee. Even 1 cm is hard to find in the knee. So, while the margins, what could be managed in the knee, are good, it is possible some of the tumor cells were left behind. So, better safe than sorry.
When we met with Dr. Indelicato regarding radiation, he said there are two approaches; a) Observation with MRI/CT scans every 3 months, and b) Radiation. The pro about observation is that it is possible all the cancer was removed and no additional action is necessary - no radiation, etc. The con is that if the cancer returns it means radiation and possibly additional surgery. The pro about radiation is that we minimize the likelihood of the cancer returning. The con is that there are risks - skin issues during and after radiation, more fragile femur and tibia (leading to breaks), arthritis, additional scar tissue limiting mobility. Mom asked a very good question; what is the likelihood of the cancer returning with and without radiation. Dr. Indelicato's response pretty much made my decision. Without radiation, there is a 50% chance the cancer will return in the same or a different place. With radiation, that goes down to 5-10%.
I had already been leaning towards radiation, but that pretty much sealed it. Then when Dr. Berrey also recommended radiation, there was no doubt in my mind. I'll take the risks, none of which are guaranteed, to minimize the risk of the cancer coming back, which is also not guaranteed. What do I have to lose? Time and money. What do I have to gain? A longer, cancer-free life.
So, I'll be getting an appt in about two weeks for my set-up appt. This is when I get a CT scan which will determine the radiation boundaries, establish the exact positioning of my body for radiation, and determine the radiation course that is best for me. My radiation will begin mid-September and continue for five weeks, five days a week, roughly one hour a day. I likely will not be getting the more desirable Proton Therapy treatment. The treatment runs into the six digits in cost. And in the words of Dr. Indelicato, Proton Therapy is reserved for folks with 'big C'. Meaning, my cancer is 'little C'.
'Little C'. Does anyone have any idea how heavenly those two small words are? I have 'little C'. I have cancer. But it's not life-threatening. It is more of an expensive side trip. It is incredible what an impact the words 'little C' had not only on me but also my parents and DH. You could literally see the little stress bubbles above everyone's head popping out of existence. 'Little C'. How nice to only have 'little C'. I have a long life ahead of me and though I was hopeful that was indeed the case, it is wonderful that by putting me in the 'little C' column, the doctors have confirmed that indeed I do have a long life to look forward to.
Wednesday, August 10, 2011
Radiation Consult To Come!
The Radiation Therapy consult is scheduled for 8:30 tomorrow morning. I am a bit nervous only because all this is new. I am including a link to the facility I'm scheduled for (http://www.floridaproton.org/). There is a good introduction to the treatment of sarcoma in there (http://www.floridaproton.org/about-cancer/sarcoma-introduction.html). I will be meeting with the surgeon afterwards so he can see how his handiwork is healing. I was a little distressed when, while Rufus was replacing the bandaging, I discovered I have no sensation on the lateral side of my knee. This is where the tumor was removed. And while I don't know whether I'll regain full sensation, it is better than losing part of my leg.
So, I am getting ready for the two appointments. I have my list of meds and a list of questions for each facility. I don't want to forget any questions I may have tomorrow. I think the hardest part will be to get up around 7:15 in the morning. I am so not a morning person. And it's gotten worse since the surgery. I can't seem to get good sleep until the wee hours of the morning. But I don't want to take my Lunesta because I don't want it to interfere with anything. So, that will be one of my questions tomorrow - can I take my sleeping pill when I can't sleep?
Gabriel is spending the night at a friend's house tonight. He has been surrounded by adults all week, and he needs to be around other children around his age (though he is the youngest of the bunch). It is a break for both him and us grown-ups. That will also make getting up and going to the appointments that much easier.
I am sure there will be more to report tomorrow after two very important appointments. I am sure there will be many more appointments. So, let's 'git 'er done'!
So, I am getting ready for the two appointments. I have my list of meds and a list of questions for each facility. I don't want to forget any questions I may have tomorrow. I think the hardest part will be to get up around 7:15 in the morning. I am so not a morning person. And it's gotten worse since the surgery. I can't seem to get good sleep until the wee hours of the morning. But I don't want to take my Lunesta because I don't want it to interfere with anything. So, that will be one of my questions tomorrow - can I take my sleeping pill when I can't sleep?
Gabriel is spending the night at a friend's house tonight. He has been surrounded by adults all week, and he needs to be around other children around his age (though he is the youngest of the bunch). It is a break for both him and us grown-ups. That will also make getting up and going to the appointments that much easier.
I am sure there will be more to report tomorrow after two very important appointments. I am sure there will be many more appointments. So, let's 'git 'er done'!
Same Day, Second Post
Yes, I writing two posts tonight. When I was just about done with my first post, I realized, I that I also wanted to share some insight about Gabriel. But rather than write one extra long post, I thought I'd write a second post. So, here it is.
Gabriel has been having a week. First mommy goes to the hospital for four days. Then Coco and Papa come to visit. Then mommy comes home but can't do any of the things she usually does for Gabe. And then, Coco and Papa make him do all sorts of things he is not used to doing! Good for Coco and Papa I say!
Yes, I have to hang my head. Gabriel is spoiled, spoiled, spoiled. He's the baby. He's had developmental issues. He's the baby. He was diagnosed as Autistic. He's the baby. So, naturally, Gabriel, in large part, rules the roost. From birth to about 6 years of age, Gabriel was severely to moderately developmentally disabled. But the strides he's made a school and in therapy have been phenomenal. And now, he could probably be diagnosed as high-functioning Asperger's.
Gabriel, as with all children, is a picky eater. Fort the most part, we have put it down as a symptom of his Autism. Now, though, we can put it down to picky eating. Since Coco has been his primary caretaker, Gabriel has been learning to sit through dinner until he's eaten everything on his plate. The biggest item to note is that the 'everything on his plate' is the same thing everyone else is eating. Up to now it's been what he's felt like eating. So, I've been listening to Gabriel's crocodile tears, and while it has been difficult, it has also been illuminating. I am seriously spoiling Gabriel! And that needs to stop.
The other learning experience for Gabriel is that when he goes to bed he needs to sleep all night in his own bed. Up to now, yet again, Gabriel has been getting his way. He starts in his bed and somewhere in the wee hours of the night he sneaks into mommy's bed for the rest of sleepy time. Along comes Coco and Papa and now Gabriel must spend the entire night in his own bed. The first night I was home, he did well. When I woke up after the second night, there was Gabriel, sound asleep. Coco was none too happy with him. So, that night (the third night), Gabriel is in tears as he comes to kiss mommy good night. Mommy reads the requisite two stories (one of which is overly long Wacky Wednesday). Afterwards, Coco reads him The Giving Tree and sternly reminds Gabriel that he must stay in his bed all night. Gabriel did good!
Tonight Mom and I were talking. She first apologized and then went on to simply state that Gabriel is very spoiled. And I have to admit he is. I told her that for me the difficult part will be to continue these new patterns after she and Dad leave. It won't be difficult the first few nights. But as it continues, that will be difficult. But then, Gabriel should already be learning these new traits, and if I'm consistent, neither one of us will 'fall off the wagon'.
I love having my parents around. I just wish I could live in the same city as them. All this would be so much easier, and I would know that Gabriel has consistency and firm hands to guide him when I am not able to.
Gabriel has been having a week. First mommy goes to the hospital for four days. Then Coco and Papa come to visit. Then mommy comes home but can't do any of the things she usually does for Gabe. And then, Coco and Papa make him do all sorts of things he is not used to doing! Good for Coco and Papa I say!
Yes, I have to hang my head. Gabriel is spoiled, spoiled, spoiled. He's the baby. He's had developmental issues. He's the baby. He was diagnosed as Autistic. He's the baby. So, naturally, Gabriel, in large part, rules the roost. From birth to about 6 years of age, Gabriel was severely to moderately developmentally disabled. But the strides he's made a school and in therapy have been phenomenal. And now, he could probably be diagnosed as high-functioning Asperger's.
Gabriel, as with all children, is a picky eater. Fort the most part, we have put it down as a symptom of his Autism. Now, though, we can put it down to picky eating. Since Coco has been his primary caretaker, Gabriel has been learning to sit through dinner until he's eaten everything on his plate. The biggest item to note is that the 'everything on his plate' is the same thing everyone else is eating. Up to now it's been what he's felt like eating. So, I've been listening to Gabriel's crocodile tears, and while it has been difficult, it has also been illuminating. I am seriously spoiling Gabriel! And that needs to stop.
The other learning experience for Gabriel is that when he goes to bed he needs to sleep all night in his own bed. Up to now, yet again, Gabriel has been getting his way. He starts in his bed and somewhere in the wee hours of the night he sneaks into mommy's bed for the rest of sleepy time. Along comes Coco and Papa and now Gabriel must spend the entire night in his own bed. The first night I was home, he did well. When I woke up after the second night, there was Gabriel, sound asleep. Coco was none too happy with him. So, that night (the third night), Gabriel is in tears as he comes to kiss mommy good night. Mommy reads the requisite two stories (one of which is overly long Wacky Wednesday). Afterwards, Coco reads him The Giving Tree and sternly reminds Gabriel that he must stay in his bed all night. Gabriel did good!
Tonight Mom and I were talking. She first apologized and then went on to simply state that Gabriel is very spoiled. And I have to admit he is. I told her that for me the difficult part will be to continue these new patterns after she and Dad leave. It won't be difficult the first few nights. But as it continues, that will be difficult. But then, Gabriel should already be learning these new traits, and if I'm consistent, neither one of us will 'fall off the wagon'.
I love having my parents around. I just wish I could live in the same city as them. All this would be so much easier, and I would know that Gabriel has consistency and firm hands to guide him when I am not able to.
Tuesday, August 9, 2011
Famly Pet, Family Member
It's Tuesday. Nothing new happened, so I thought I'd share some observations.
Our dog, Max, is a Welsh Pembroke Corgi, while our cat, Jerry, is a mix. They are right about the same age. We got Max first and two months later came Jerry. They're both male, and since Max was first introduced to the home, he's more of the alpha animal. But at 3 feet and above, Jerry has the clear advantage.
I am a cat person. Always have been; always will be. I like dogs. I'm just not as enamored of them. But for some reason, dogs are far more enamored of me. It's more likely they are just far more enamored of their humans, but I like to think they sense something more in me.
Anyway! The night before surgery, Max and Jerry knew something was up. They observed the extra activity and sensed the heightened stress. So, they were a lot more skittish than on our typical Tuesday night. Mom and Dad were at the house for two days before I came home. So, Max and Jerry had ample opportunity to acquaint themselves with the new house guests. And then when I came home, oooh something new! Both Max and Jerry were very interested in the crutches. And they really wanted to check out the thingamajig on mommy's leg. But naturally, they get shoo'ed away every time they get near.
I've been home for three days now and it is like I have two additional caretakers. Max rarely leaves my side. And when he can't get up close and personal, he's laying down right next to me, licking the crutches, and very carefully sniffing my foot. When I get up, he leads the way. Then he watches over me until I settle back down. Another thing, Max generally rarely barks. But since I've been home, he barks when I call someone's name, when there is a loud noise, when a door closes - just about everything. It is as though as Alpha Dog, he is ensuring his pack member, me, is getting enough attention. What is most endearing but also annoying is he sits next to the toilet when I'm going to the bathroom. I keep fearing I'll trip over him.
Then there's Jerry. He too follows me everywhere. But whereas Max is watching over me, Jerry is constantly wanting to be in my lap, wanting to be petted, wanting to be in the same room with me. Jerry is a 16 pound scaredy cat who doesn't like being held. If you pick him up he squeaks and does what he can to jump down. If you put him outside, he sits by the door until you let him in. So, having Jerry jumping into my lap 12 times a day and kneading my stomach is very out of character. As I write this he is laying next to me, nuzzling my hand with his head, trying to keep all the attention on him.
So, what I find interesting, is when a family member is ill or in some way incapacitated, the pets sense this and as part of the pack do what they can to protect, defend, and assist that pack member. This same thing occurred after Baby Rufus's death and during my pregnancy with Gabriel. The dog we had then, a German Shepherd named Woody, was my shadow. He followed me everywhere in and around the house. And if he could have, he would have gone with me on my errands. As it was, he got very car sick.
I find it endearing, and even rehabilitative, that our pets actively participate in our well-being. They are part of the family, so it only makes sense. Too, I find it comforting that in addition to the people around me, the animals are also intent on my well-being.
Our dog, Max, is a Welsh Pembroke Corgi, while our cat, Jerry, is a mix. They are right about the same age. We got Max first and two months later came Jerry. They're both male, and since Max was first introduced to the home, he's more of the alpha animal. But at 3 feet and above, Jerry has the clear advantage.
I am a cat person. Always have been; always will be. I like dogs. I'm just not as enamored of them. But for some reason, dogs are far more enamored of me. It's more likely they are just far more enamored of their humans, but I like to think they sense something more in me.
Anyway! The night before surgery, Max and Jerry knew something was up. They observed the extra activity and sensed the heightened stress. So, they were a lot more skittish than on our typical Tuesday night. Mom and Dad were at the house for two days before I came home. So, Max and Jerry had ample opportunity to acquaint themselves with the new house guests. And then when I came home, oooh something new! Both Max and Jerry were very interested in the crutches. And they really wanted to check out the thingamajig on mommy's leg. But naturally, they get shoo'ed away every time they get near.
I've been home for three days now and it is like I have two additional caretakers. Max rarely leaves my side. And when he can't get up close and personal, he's laying down right next to me, licking the crutches, and very carefully sniffing my foot. When I get up, he leads the way. Then he watches over me until I settle back down. Another thing, Max generally rarely barks. But since I've been home, he barks when I call someone's name, when there is a loud noise, when a door closes - just about everything. It is as though as Alpha Dog, he is ensuring his pack member, me, is getting enough attention. What is most endearing but also annoying is he sits next to the toilet when I'm going to the bathroom. I keep fearing I'll trip over him.
Then there's Jerry. He too follows me everywhere. But whereas Max is watching over me, Jerry is constantly wanting to be in my lap, wanting to be petted, wanting to be in the same room with me. Jerry is a 16 pound scaredy cat who doesn't like being held. If you pick him up he squeaks and does what he can to jump down. If you put him outside, he sits by the door until you let him in. So, having Jerry jumping into my lap 12 times a day and kneading my stomach is very out of character. As I write this he is laying next to me, nuzzling my hand with his head, trying to keep all the attention on him.
So, what I find interesting, is when a family member is ill or in some way incapacitated, the pets sense this and as part of the pack do what they can to protect, defend, and assist that pack member. This same thing occurred after Baby Rufus's death and during my pregnancy with Gabriel. The dog we had then, a German Shepherd named Woody, was my shadow. He followed me everywhere in and around the house. And if he could have, he would have gone with me on my errands. As it was, he got very car sick.
I find it endearing, and even rehabilitative, that our pets actively participate in our well-being. They are part of the family, so it only makes sense. Too, I find it comforting that in addition to the people around me, the animals are also intent on my well-being.
Monday, August 8, 2011
Clean Hair and Grace
Whoo! The last day I truly had clean hair was last Wednesday when I went in for surgery. The hospital had these shower caps that had liquid soap so you could wash your hair - sort of. I used one in the hospital and one at home. They helped, but my hair was still so greasy. So, Mom and Dad treated me to a wash, cut and blow-dry today at Hair Cuttery. It was HEAVEN! My hair is now in a bob and I love it! The girl who took care of me was wonderful. She's broken her tibia, wrist, and all sorts of other bones, and she knows first-hand how hard it is to wash your hair and not get wet. I loved her hair too. She had temporary hair dyes layered in a rainbow. I know it sounds, um, loud, but it was actually very pretty. Now I wonder if I'm still young enough for purple hair!
Since today was Monday, I also had to schedule some appointments. First I tried Radiology. But they were missing some paperwork from the surgeon. The surgeon's office called and said it would be tomorrow before it would be straightened out. Then, I called for a follow-up appointment with the surgeon. That is Thursday. Naturally, he'll be looking at my leg making sure it is healing properly. The sutures are dissolvable, so thankfully I don't have to get anything else cut away from my leg. I am also assuming he will have the pathology results from the second lab. See, pathology couldn't determine what the tumor was during surgery, so they had to send it to the lab for a more extensive study. That took 2-3 days. Then, I guess because the tumor is rare, they sent it to another lab for a follow-up. And I am assuming that will confirm what the first lab determined. What I hope and pray is that the secondary findings are just a good as the primary findings.
You may be asking why I use 'good' to describe the findings. Well, research has found that a positive attitude is very important, almost critical, to a swift and healthy recovery with fewer relapses. So, though some may choose to view the findings in a less than positive light, I choose to accept them as a new learning experience in my life. The findings could have been worse. Much worse. But they weren't. And I want it to continue to be that way. Yes, I get nervous thinking Dr. Berrey will say their initial findings were incorrect. But they may in fact be - to my benefit. And that is how I must approach this. God has given me a swift kick in the bloomers and I am making sure I get back on the path He has chosen for me. Though I can't see the path (other than a few days ahead), I know it is ok.
I can only convey my trust with a story. Back in 2002 I was 3 days from giving birth to my third child. I went to the last appointment before the scheduled C-Section full of hope and joy. I left bereft. My, Rufus's and my, son had died in utero, at term. At 7:30 PM that night I gave birth to Rufus Hamons Jenkins III. He was 5.75 lbs, 19" long, beautiful, and stillborn. Honestly, I don't remember much of how I made it through the next week - in the hospital, consoling friends and family - my two older children, my husband, planning a memorial service. But I know how I made it through the heartwrenching body-wracking grief, the ocean of tears. It was Grace. God's Grace. I never truly understood the definition or meaning of grace until Baby Rufus died. The only way I can describe it is it was as if I was enveloped in God's hands and the love and sorrow flowed in between His fingers and mingled with the grief to form a protective blanket through which nothing hurtful or petty penetrated. And at the end of the evening of Baby Rufus's memorial service, when I could smile and thank those who had come, I knew Grace had seen me through.
And again, in my time of great need, I feel the presence of God's Grace. And I am so thankful that I have a belief system that permits me hope in that which I cannot see. It, the Trinity, is my Rock.
Since today was Monday, I also had to schedule some appointments. First I tried Radiology. But they were missing some paperwork from the surgeon. The surgeon's office called and said it would be tomorrow before it would be straightened out. Then, I called for a follow-up appointment with the surgeon. That is Thursday. Naturally, he'll be looking at my leg making sure it is healing properly. The sutures are dissolvable, so thankfully I don't have to get anything else cut away from my leg. I am also assuming he will have the pathology results from the second lab. See, pathology couldn't determine what the tumor was during surgery, so they had to send it to the lab for a more extensive study. That took 2-3 days. Then, I guess because the tumor is rare, they sent it to another lab for a follow-up. And I am assuming that will confirm what the first lab determined. What I hope and pray is that the secondary findings are just a good as the primary findings.
You may be asking why I use 'good' to describe the findings. Well, research has found that a positive attitude is very important, almost critical, to a swift and healthy recovery with fewer relapses. So, though some may choose to view the findings in a less than positive light, I choose to accept them as a new learning experience in my life. The findings could have been worse. Much worse. But they weren't. And I want it to continue to be that way. Yes, I get nervous thinking Dr. Berrey will say their initial findings were incorrect. But they may in fact be - to my benefit. And that is how I must approach this. God has given me a swift kick in the bloomers and I am making sure I get back on the path He has chosen for me. Though I can't see the path (other than a few days ahead), I know it is ok.
I can only convey my trust with a story. Back in 2002 I was 3 days from giving birth to my third child. I went to the last appointment before the scheduled C-Section full of hope and joy. I left bereft. My, Rufus's and my, son had died in utero, at term. At 7:30 PM that night I gave birth to Rufus Hamons Jenkins III. He was 5.75 lbs, 19" long, beautiful, and stillborn. Honestly, I don't remember much of how I made it through the next week - in the hospital, consoling friends and family - my two older children, my husband, planning a memorial service. But I know how I made it through the heartwrenching body-wracking grief, the ocean of tears. It was Grace. God's Grace. I never truly understood the definition or meaning of grace until Baby Rufus died. The only way I can describe it is it was as if I was enveloped in God's hands and the love and sorrow flowed in between His fingers and mingled with the grief to form a protective blanket through which nothing hurtful or petty penetrated. And at the end of the evening of Baby Rufus's memorial service, when I could smile and thank those who had come, I knew Grace had seen me through.
And again, in my time of great need, I feel the presence of God's Grace. And I am so thankful that I have a belief system that permits me hope in that which I cannot see. It, the Trinity, is my Rock.
Sunday, August 7, 2011
Home At Last!
(Warning: Photos are included in this post. They may not be suitable for all viewers.)
How nice it was to sleep in my own bed! Better yet, I now know the agony of needing to scratch but being unable. OMG. If I could, I would spend the better part of the day rubbing my body against a very rough and knobbly tree trunk! Sitting all day, while it sounds relaxing, is also sweaty. My butt, my back - they get warm. Ugh, ugh, ugh. While I am permitted to open the leg brace and keep it open (as long as my leg stays on the brace), I really don't want to. It's too tempting to scratch the back of my leg!
Chris (my older son) and DH (Dear Husband, Rufus) are my official bandage changers. And today was their first opportunity to view "the leg". While they were circumspect about it, when I later asked my mom what they said, she told me they said it looked bad. So, I'm posting a couple photos. Yes, it does look bad. It looks like I have a great big chunk/dent in my leg. But it could be worse. I could have lost my leg from the knee down.
I call tomorrow to schedule my first appointment with the radiologist. I am assuming the first appointment will be a meet-and-greet to go over what to expect, the schedule, etc. Since this is my first time going through Radiology, it will be a new experience. I don't know what to expect. I know I don't anticipate getting radiology in my first appointment. I will also schedule my follow-up with Dr. Berrey for the following week. I am assuming I will also need Physical Therapy (PT) for a while, too. Though, I don't expect that will be for a while. It may even be after I complete Radiation Therapy. And while I expect almost full use of my leg after all this, I wondering if I won't be needing some form of assistance here on out. Something like crutches, a cane, walker, etc. I mean, doesn't Radiation Therapy weaken the bones? If so, I expect I'll need assistance for a while until my leg recovers enough function.
But now that I read all of this, is it too early to think this far ahead? I mean, I really need to take it slow. Get my leg to heal. Go to RT and get that started, and allow each new experience to envelope me and to learn from them.
Really, that is what all of this is. One giant learning experience. And I thank God for permitting me the opportunity to learn more. I truly do love learning though some learning it better learned in books.
How nice it was to sleep in my own bed! Better yet, I now know the agony of needing to scratch but being unable. OMG. If I could, I would spend the better part of the day rubbing my body against a very rough and knobbly tree trunk! Sitting all day, while it sounds relaxing, is also sweaty. My butt, my back - they get warm. Ugh, ugh, ugh. While I am permitted to open the leg brace and keep it open (as long as my leg stays on the brace), I really don't want to. It's too tempting to scratch the back of my leg!
Chris (my older son) and DH (Dear Husband, Rufus) are my official bandage changers. And today was their first opportunity to view "the leg". While they were circumspect about it, when I later asked my mom what they said, she told me they said it looked bad. So, I'm posting a couple photos. Yes, it does look bad. It looks like I have a great big chunk/dent in my leg. But it could be worse. I could have lost my leg from the knee down.
I call tomorrow to schedule my first appointment with the radiologist. I am assuming the first appointment will be a meet-and-greet to go over what to expect, the schedule, etc. Since this is my first time going through Radiology, it will be a new experience. I don't know what to expect. I know I don't anticipate getting radiology in my first appointment. I will also schedule my follow-up with Dr. Berrey for the following week. I am assuming I will also need Physical Therapy (PT) for a while, too. Though, I don't expect that will be for a while. It may even be after I complete Radiation Therapy. And while I expect almost full use of my leg after all this, I wondering if I won't be needing some form of assistance here on out. Something like crutches, a cane, walker, etc. I mean, doesn't Radiation Therapy weaken the bones? If so, I expect I'll need assistance for a while until my leg recovers enough function.
But now that I read all of this, is it too early to think this far ahead? I mean, I really need to take it slow. Get my leg to heal. Go to RT and get that started, and allow each new experience to envelope me and to learn from them.
Really, that is what all of this is. One giant learning experience. And I thank God for permitting me the opportunity to learn more. I truly do love learning though some learning it better learned in books.
Saturday, August 6, 2011
Home From the Hospital!
The hospital wifi didn't work too well, so it's been four days since my last post. A lot has happened since then. I'll try to fit it all in.
In a nutshell,
My family keeps asking me, how long for this, how many treatments for that. When I ask Dr. Berrey, he says "as long as it takes." And that should be the proper approach. I need however many treatments as are needed. What is important is that I approach this new event in my life in a positive manner and that I put God in His proper place in my life.
So much has been crazy in my life the last four years. I have not been happy. And now it is time to stop the pity party. It is time to accept my life as it is and to enjoy it. Warts and all.
And now for the more humorous parts of the last four days.
So, I go into pre-op and the nurse is trying to find a vein for the IV while the Anesthesiologist is talking to me, asking questions, etc. The contrast MRI the week before was given in my left hand, but not before the tech blew a vein. The pre-op nurse? Trying to get an IV in the same hand! Naturally, she fails...after she hits the nerve the tech hit last week. So, now she's looking at the right hand. Aaand she starts poking, while the Anesth. is getting my BP and asking me questions. I'm getting a bit light-headed and clammy and whiten up, so they get my head down STAT. The Anesth looks at the BP and nearly chokes. In a voice half an octave higher than before, she asks me if I want to know my BP. I'm like - no way. And just then, the pre-op nurse gets the IV in. Finally!!! Fifteen minutes later, the Anesth tells me that while they were getting the IV in and taking my BP it was 173/123. WHOA!!! But then everyone says - "That's when they were sticking you!"
And later that night, my night nurse, Tony, tells me I've got to pee by 11:00 PM (12 hours after surgery began). So I drink. And drink. And drink. And drink. But nothing. Not one drop comes out. 10:00. 10:30. 10:45. 11:00. 11:15. 11:30. And Tony puts a saline drip on me. Around 1:00 AM Niagara Falls comes a-knocking. And 2:00 AM. And 3:30 AM. And 5:30 AM. Tony and I were best buds that night!
Mom and Dad are in town now. They'll be staying for a couple weeks, and I really appreciate that. I need them to help me and Rufus and the kids and to be there when I visit Radiology.
Many thanks for the prayers, positive thoughts, everything. More to come tomorrow!
In a nutshell,
- The surgery went well. According to Dr. Berrey, "the margins looked good."
- I have a HUGE dent in my leg - picture to come later.
- The mass is malignant. The tumor is Giant Cell Tumor of the Tendon Sheaths (GCTTS). Benign masses of this type are extremely common, whereas malignant masses of this type are extremely rare.
- The mass is in lab being confirmed. It appears to be Stage 2.
- Radiology is definite. Chemo is not useful for this cancer.
- If it metastasizes, it typically goes to the lungs first.
- Chest xrays and CT scans will be a regular part of my life from here on out.
- Clean hair and bod are very difficult when you absolutely cannot get an entire leg wet.
- Shands Hospital is tops in my book. Ortho took very good care of me.
My family keeps asking me, how long for this, how many treatments for that. When I ask Dr. Berrey, he says "as long as it takes." And that should be the proper approach. I need however many treatments as are needed. What is important is that I approach this new event in my life in a positive manner and that I put God in His proper place in my life.
So much has been crazy in my life the last four years. I have not been happy. And now it is time to stop the pity party. It is time to accept my life as it is and to enjoy it. Warts and all.
And now for the more humorous parts of the last four days.
So, I go into pre-op and the nurse is trying to find a vein for the IV while the Anesthesiologist is talking to me, asking questions, etc. The contrast MRI the week before was given in my left hand, but not before the tech blew a vein. The pre-op nurse? Trying to get an IV in the same hand! Naturally, she fails...after she hits the nerve the tech hit last week. So, now she's looking at the right hand. Aaand she starts poking, while the Anesth. is getting my BP and asking me questions. I'm getting a bit light-headed and clammy and whiten up, so they get my head down STAT. The Anesth looks at the BP and nearly chokes. In a voice half an octave higher than before, she asks me if I want to know my BP. I'm like - no way. And just then, the pre-op nurse gets the IV in. Finally!!! Fifteen minutes later, the Anesth tells me that while they were getting the IV in and taking my BP it was 173/123. WHOA!!! But then everyone says - "That's when they were sticking you!"
And later that night, my night nurse, Tony, tells me I've got to pee by 11:00 PM (12 hours after surgery began). So I drink. And drink. And drink. And drink. But nothing. Not one drop comes out. 10:00. 10:30. 10:45. 11:00. 11:15. 11:30. And Tony puts a saline drip on me. Around 1:00 AM Niagara Falls comes a-knocking. And 2:00 AM. And 3:30 AM. And 5:30 AM. Tony and I were best buds that night!
Mom and Dad are in town now. They'll be staying for a couple weeks, and I really appreciate that. I need them to help me and Rufus and the kids and to be there when I visit Radiology.
Many thanks for the prayers, positive thoughts, everything. More to come tomorrow!
Wednesday, August 3, 2011
T minus 1 (Sorta)
I realized I'd forgotten to post when I went to bed. I thought I'd be too tired. Three hours later, and I'm still up...Okay. Guess I'm not too tired!
Tuesday at work was strange. I've been picking and choosing who to tell beforehand that I'd be going on leave. So, when I had to hand off part of a project to a coworker he was a bit stunned when he found out. I think my main reason for not being so forward about it is I am horrible with tears. I used to make fun of my mom telling her she'd cry at Little House on the Prairie. Now I'm just about as bad. I mean, my tear ducts start salivating at the mention of 'wedding' or 'sad'.
After being stunned by the GP's phone call that I may have cancer, I was in tears for two or three days. Every time I opened my mouth to tell someone the waterworks would start up. But these past three days have been much better. I've been praying, thinking affirmatively, and realizing that many, many other people go through the same thing and don't break down all the time.
Before finding out I had to have surgery, I signed up to bring dinner to a co-worker and her family who'd recently lost their only child. I realized that my little life experience doesn't have anything to do with theirs. And, in fact, theirs is far more devastating than 'a possibility'. So, I made them dinner, and Tuesday after work I took that dinner to their house. They weren't there, but that had been arranged and I took the meal to someone who would make sure they received it. It made me feel better. Doing something for someone else.
So, Tuesday night comes. DH (Dear Husband) and older son start frantically cleaning the house - the in-laws (my parents) will be here in two days and the house is not at all ready for them. Funny! I don't know why. It just is.
Right now it is 1:22 AM. In 8 and one-half hours I will be at the hospital getting admitted and prepped for surgery. In 10 and one-half hours I will go under the knife. I pray the surgeon and his team are sure, swift and get all of the mass out. I pray the mass is benign. And I pray for a swift and hassle-free recovery. Oh, and really good pain meds. Or very little pain. Whichever works.
TTFN and I'll write as soon as I am able! (I hope they have wifi in hospital!)
Tuesday at work was strange. I've been picking and choosing who to tell beforehand that I'd be going on leave. So, when I had to hand off part of a project to a coworker he was a bit stunned when he found out. I think my main reason for not being so forward about it is I am horrible with tears. I used to make fun of my mom telling her she'd cry at Little House on the Prairie. Now I'm just about as bad. I mean, my tear ducts start salivating at the mention of 'wedding' or 'sad'.
After being stunned by the GP's phone call that I may have cancer, I was in tears for two or three days. Every time I opened my mouth to tell someone the waterworks would start up. But these past three days have been much better. I've been praying, thinking affirmatively, and realizing that many, many other people go through the same thing and don't break down all the time.
Before finding out I had to have surgery, I signed up to bring dinner to a co-worker and her family who'd recently lost their only child. I realized that my little life experience doesn't have anything to do with theirs. And, in fact, theirs is far more devastating than 'a possibility'. So, I made them dinner, and Tuesday after work I took that dinner to their house. They weren't there, but that had been arranged and I took the meal to someone who would make sure they received it. It made me feel better. Doing something for someone else.
So, Tuesday night comes. DH (Dear Husband) and older son start frantically cleaning the house - the in-laws (my parents) will be here in two days and the house is not at all ready for them. Funny! I don't know why. It just is.
Right now it is 1:22 AM. In 8 and one-half hours I will be at the hospital getting admitted and prepped for surgery. In 10 and one-half hours I will go under the knife. I pray the surgeon and his team are sure, swift and get all of the mass out. I pray the mass is benign. And I pray for a swift and hassle-free recovery. Oh, and really good pain meds. Or very little pain. Whichever works.
TTFN and I'll write as soon as I am able! (I hope they have wifi in hospital!)
Monday, August 1, 2011
T minus 2 days
It's late Monday night. Just finished watching Battle: Los Angeles. LOVED IT! Michelle Rodriguez is one kick ass action chick. She's fun! My boss was back in to work today. He was in a bicycling accident a little over a week ago. The concussion is what kept him out last week. So, I met with him. Gave him a status of my projects so anyone could come and pick up where I leave off.
I've been testing one of my projects and getting ready to move my code to the standard programs. It was funny today. My Analyst asked me why I wasn't going to incorporate one bit of code. I looked at her and said, "I'm going for surgery in two days. My mind is on a few things right now, and I don't want to make any unnecessary mistakes." It must have been the way I looked when I said that. She just looked at me and said okay. One of the very few times I've gotten my way at the 10th hour.
But at the same time, it was illuminating. She shared a story where she was in a similar situation - surgery not knowing what the end result would be. And the end result was GOOD! So, that is what I keep focusing on. Dr. Berrey said the majority of what he extracts is not cancer. And that is what I'm praying for. This is my swift kick in the pants. A taste of my mortality to get my butt in gear and whip my life into shape. For myself and for those around me. I've been wallowing in a pool of self-pity and now it's time to get out.
So, c'mon whatever you are - the pearl in my oyster of a knee. You're irritating me and I'm gonna get you out!
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