It is always something!
I met with my surgeon yesterday, and I have 2 things going on that are delaying scheduling surgery - my cold and the burn on my right arm.
What burn? Here is what happened. I haven't cooked at all since I began chemo treatments. I didn't have a lot of energy and the thought of food really wasn't pleasant. We have been very fortunate in support from friends here at the Lake and at BSE (the boys' school) who have brought meals by twice a week since I got my diagnosis. Jim and Amelia have been filling in the slack. So last Saturday I was feeling pretty good, and I actuallly planned a meal and helped in its preparation. Jim smoked a pork shoulder on the grill and I made coleslaw for Bar B Que pulled pork. Before I got sick, I'd been experimenting with making baked potato chips. I've got the flavor down, now I'm just working on the right amount of crispness. Anyway, I decided to try again on Saturday. I successfully got the potatoes sliced without slicing my finger(which is a major accomplishmment for me), but I wasn't so successful in getting the cookie sheet out of the oven.
I burned my right forearm. I thought it was nothing and hadn't even put anything on it. Although I didn't think it was a big deal, I showed the surgeon my burn, just so he wouldn't think it was some kind of cancerous lesion. He got very concerned due to the risk of infection and lymphedea. As part of the surgery, he will remove all of the lymph nodes in my right arm. This means that from now on any kind of wound to my right arm becomes dangerous because without the lymph nodes my ability to fight infections on my right arm becomes very difficult. I'll also run the risk of Lymphedema which can cause your arm to swell. As neither would be much fun for me, he doesn't want to start right off the bat with me having a wound on my arm. So it will have to heal before we can go ahead. He has given me a prescription for topical antibiotic cream which I have to put on 3 times a day. Hopefully, this will speed the healing process.
And he wants me to be totally over my cold. I'm actually feeling pretty good, but still have some congestion and a little cough. Just so nothing else comes up, I'm going to be very paranoid for the next week and avoid going out as little as possible. I've been fairly careful during chemo to avoid germ situations. I've avoided shaking hands and hugging and have tried to limit visiting places like hospitals and schools. Jim has been taking Michael to physical therapy, so I haven't had to go to Children's Mercy, and I've only gone to one school event where Miles had a reading part. I've not even been to watch the boys' swim practice, and I really miss seeing them swim. I had hoped to get out this week and do a few things including finally getting together with friends I've been missing, but I guess I won't do that either. I guess if I want to look on the bright side, it has turned bitter cold here for the next couple of days, so being forced to stay in won't be too big a deal.
I'll go meet with Dr. Sclar again next Tuesday and hopefully I'll be cleared for the surgery. If so, he said we would then schedule it sometime that week. I hope it is sooner because we'll really be pushing into Christmas. The good news about the surgery is it is a pretty easy one because its not like they have to open my chest or abdomen. Dr. Sclar said I'd have to stay in the hospital for 2 nights and once home I should be able to move around.
The yoga thing is STILL hanging over me! Ugh!
Stay warm and enjoy the Christmas weather.
Late breaking news: I was just getting ready to post this when I received a call from Dr. Sclar's office. They are going to go ahead and put me on the surgery schedule. If for some reason, I'm not better we'll just move it. She is going to try for Wednesday, December 16.
Monique
Wednesday, December 9, 2009
Thursday, December 3, 2009
Headed in the Right Direction
Good News! Looks like everything is on track. I saw my Oncologist this morning and he is very pleased with my progress from chemo and felt I can go ahead with surgery. I have called the surgeon and will meet with him next Tuesday. Now I just need to hope he feels the same as Dr. Neubauer and can get me scheduled before Christmas. Dr. Neubauer thought I'd need about 4 weeks to recover from the surgery and then we could start my second round of chemo. The next round will be a different drug which I'll get 4 times. There is a chance we'll do it once a week instead of every two weeks. Dr. Neubauer also said this drug should not be as bad as the last ones. It will not mess with my white blood cells, so I will not have to take the Nulasta shot.
Now that I've shared the good news, I'll tell you my chemo break isn't going quite as well I'd expected. Last week I thought the effects from chemo should be wearing off and I'd start feeling pretty darn good. Then on Tuesday or Wednesday, I started having horrible problems with my eyes. There were constant tears - even when I'd wake up in the middle of the night, tears would be streaming down my face. Jim and the kids kept asking why I was crying and I'd have to explain I wasn't crying but that my eyes just keep watering. After several days of this my eyes were puffy and swollen and I was stuffy, just like you'd feel if you'd cried for 3 days straight. I did discover for some reason that wearing my contacts actually helped. I had read that dry eye could be one of the side affects and had also had people warn me this could happen. But I thought dry eye would mean my eyes would be dry and that especially wearing my contacts would be difficult. Now I know it should really be called "crying eye" instead of "dry eye". I finally figured this out on Friday and got drops to help with the dryness and this has helped some.
Then Jim caught a cold on Friday and I had it by Sunday. Sore throat, headache, cough, achey - ugh! I think by now my cold has developed into a sinus infection and Dr. Neubauer agreed that a round of antibiotics wouldn't hurt, especially since we're trying to get surgery in the next couple of weeks. So, hopefully just a day or two more and I'll feel somewhat back to normal. In the mean time, Amelia came down it with it yesterday. The joke around here is that Miles and Michael are the only healthy ones left, which is similar to the lunatics running the asylum. I asked Michael what was for dinner last night and his response was "does everyone like M&M's?" We did manage to get everything together to celebrate Miles' 11th birthday on December 1st. No, he did not get a cell phone and therefore, remains "the only one at school" without a phone. I think the suffering and humiliation will make him stronger!
And no, I haven't started Yoga yet!
I hope you are all doing well and getting into that Holiday Spirit!
Monique
Now that I've shared the good news, I'll tell you my chemo break isn't going quite as well I'd expected. Last week I thought the effects from chemo should be wearing off and I'd start feeling pretty darn good. Then on Tuesday or Wednesday, I started having horrible problems with my eyes. There were constant tears - even when I'd wake up in the middle of the night, tears would be streaming down my face. Jim and the kids kept asking why I was crying and I'd have to explain I wasn't crying but that my eyes just keep watering. After several days of this my eyes were puffy and swollen and I was stuffy, just like you'd feel if you'd cried for 3 days straight. I did discover for some reason that wearing my contacts actually helped. I had read that dry eye could be one of the side affects and had also had people warn me this could happen. But I thought dry eye would mean my eyes would be dry and that especially wearing my contacts would be difficult. Now I know it should really be called "crying eye" instead of "dry eye". I finally figured this out on Friday and got drops to help with the dryness and this has helped some.
Then Jim caught a cold on Friday and I had it by Sunday. Sore throat, headache, cough, achey - ugh! I think by now my cold has developed into a sinus infection and Dr. Neubauer agreed that a round of antibiotics wouldn't hurt, especially since we're trying to get surgery in the next couple of weeks. So, hopefully just a day or two more and I'll feel somewhat back to normal. In the mean time, Amelia came down it with it yesterday. The joke around here is that Miles and Michael are the only healthy ones left, which is similar to the lunatics running the asylum. I asked Michael what was for dinner last night and his response was "does everyone like M&M's?" We did manage to get everything together to celebrate Miles' 11th birthday on December 1st. No, he did not get a cell phone and therefore, remains "the only one at school" without a phone. I think the suffering and humiliation will make him stronger!
And no, I haven't started Yoga yet!
I hope you are all doing well and getting into that Holiday Spirit!
Monique
Friday, November 20, 2009
And finally Sunshine
Rainy
Damp
Cold
Sleepy
Lousy
Snowy
Dark
These are some adjectives that describe my last couple of days. Some of them were caused by my post chemo funk and others were caused by our truly first winter weather (well, winter for Kansas). I will admit the 2 are not a good combo for cheery good health!
I thought it would never stop raining. As usual, once I finished my Emends pills I fell into the post chemo funk, but finally started coming out of that on Wednesday. It seems to take longer each time. So far today, I’m feeling pretty good. I’m still having trouble with sleeping. I wake up about 1:30 am and can usually go back to sleep, but then I wake up again at 4:00 with my eyes wide open. Sometimes I go ahead and get up and then go back to bed about 5:30. The kids and Jim start getting up about 6 or 6:30, and I really like to be up to see them off to school – so little good deep sleep. Oh well, sleep is probably way over rated anyway.
Now that I’m starting to feel better, I hope to get to the list I made of things to do when I don’t have to lie down. One of these is yoga. This has actually been on my list since last spring (when I actually did a little yoga), but I’ve thought it would be perfect to do now. We even have yoga classes On Demand right in the family room, so I don’t have to get out or worry about fighting germs at the Y. No excuse, right? So, I’m letting this be known and hopefully will not keep finding a way not to start. I figure a few times of reporting here on my lack of motivation will get me going!
One last thought - I’m sure everyone has seen the controversial recommendation on breast cancer screening. I thought Livestrong had a good response.
I hope everyone has a wonderful weekend!
Monique
Damp
Cold
Sleepy
Lousy
Snowy
Dark
These are some adjectives that describe my last couple of days. Some of them were caused by my post chemo funk and others were caused by our truly first winter weather (well, winter for Kansas). I will admit the 2 are not a good combo for cheery good health!
I thought it would never stop raining. As usual, once I finished my Emends pills I fell into the post chemo funk, but finally started coming out of that on Wednesday. It seems to take longer each time. So far today, I’m feeling pretty good. I’m still having trouble with sleeping. I wake up about 1:30 am and can usually go back to sleep, but then I wake up again at 4:00 with my eyes wide open. Sometimes I go ahead and get up and then go back to bed about 5:30. The kids and Jim start getting up about 6 or 6:30, and I really like to be up to see them off to school – so little good deep sleep. Oh well, sleep is probably way over rated anyway.
Now that I’m starting to feel better, I hope to get to the list I made of things to do when I don’t have to lie down. One of these is yoga. This has actually been on my list since last spring (when I actually did a little yoga), but I’ve thought it would be perfect to do now. We even have yoga classes On Demand right in the family room, so I don’t have to get out or worry about fighting germs at the Y. No excuse, right? So, I’m letting this be known and hopefully will not keep finding a way not to start. I figure a few times of reporting here on my lack of motivation will get me going!
One last thought - I’m sure everyone has seen the controversial recommendation on breast cancer screening. I thought Livestrong had a good response.
I hope everyone has a wonderful weekend!
Monique
Friday, November 13, 2009
Post Chemo High
Round 1 Chemo – DONE!
This feels like a wonderful accomplishment, but in looking back, except for my little visit to the ER, it has really been bearable. Although I’m looking forward to a break for surgery, if that gives you any idea on just how fun this has been!
Thank god for Emends! These are 3 pills I get to take the 1st days of my chemo treatment. They are so good, I wish I could get them for a week. Evidently these 3 little darlings cost about $400, which might be why I don't get a better supply. Also, I think they are just for getting you over the hump of the initial dumping of the chemicals into your body. But boy do they work!
I felt great after my treatment Thursday and spent the rest of the day snoozing away and was out for good by 9:30. Very unusual for me, cause I hate going to bed early. I also got my new sleeping pill, but the verdict is still out on that one. Jim had to get up at 3:00 am to talk to someone first thing in the morning in England. So I woke up when his alarm went off and then again at 4:00 am. But I was able to go back to sleep which is an improvement.
Friday, I went to get my Nulasta shot. I'm sure I've slaughtered the spelling on this, but it is to boost my white blood cell count and thus minimize infections. This shot must really work because my WBC is always high - right where they want it. As far as the rest of my labs, my Red Blood Count is always low. This is normal and explains my total lack of energy even on days when I feel good. The rest of my “counts” are always in the normal range.
I talked to Carrie a little about what the next steps are. I can’t meet with Dr. Neubauer again until December 3. Part of the reason is Dr. Sklar my surgeon won’t do anything until I fully recover from this chemo treatment, plus they have to give this treatment time to work (which makes sense). Then we run into the Thanksgiving Holidays. Evidently even cancer treatment stops for Turkey Day! Hopefully, the tumor will now be small enough so I can have my mastectomy and I can still get this done before Christmas. Other than me being ready for surgery, the timing will also be dependent on Dr. Sklar’s schedule. He has been fantastic so far about scheduling, so I’m hoping this won’t be an issue.
And finally a hair update. I actually still have a little hair left on my head, though who knows if this last go round will finally get rid of it. Martha ( my favorite nurse) told me it will actually start to grow back while I’m on my chemo break. I think I’ll really look like a freak! Luckily I still have I brows and lashes, so lets hope those don’t suddenly fall out at the end. My next chemo round will be a different drug, but will also cause hair loss, so I’m not through with the wigs and hats yet!
I’m off to see if the squirrels are awake.
I hope everyone has a great weekend!
Monique
This feels like a wonderful accomplishment, but in looking back, except for my little visit to the ER, it has really been bearable. Although I’m looking forward to a break for surgery, if that gives you any idea on just how fun this has been!
Thank god for Emends! These are 3 pills I get to take the 1st days of my chemo treatment. They are so good, I wish I could get them for a week. Evidently these 3 little darlings cost about $400, which might be why I don't get a better supply. Also, I think they are just for getting you over the hump of the initial dumping of the chemicals into your body. But boy do they work!
I felt great after my treatment Thursday and spent the rest of the day snoozing away and was out for good by 9:30. Very unusual for me, cause I hate going to bed early. I also got my new sleeping pill, but the verdict is still out on that one. Jim had to get up at 3:00 am to talk to someone first thing in the morning in England. So I woke up when his alarm went off and then again at 4:00 am. But I was able to go back to sleep which is an improvement.
Friday, I went to get my Nulasta shot. I'm sure I've slaughtered the spelling on this, but it is to boost my white blood cell count and thus minimize infections. This shot must really work because my WBC is always high - right where they want it. As far as the rest of my labs, my Red Blood Count is always low. This is normal and explains my total lack of energy even on days when I feel good. The rest of my “counts” are always in the normal range.
I talked to Carrie a little about what the next steps are. I can’t meet with Dr. Neubauer again until December 3. Part of the reason is Dr. Sklar my surgeon won’t do anything until I fully recover from this chemo treatment, plus they have to give this treatment time to work (which makes sense). Then we run into the Thanksgiving Holidays. Evidently even cancer treatment stops for Turkey Day! Hopefully, the tumor will now be small enough so I can have my mastectomy and I can still get this done before Christmas. Other than me being ready for surgery, the timing will also be dependent on Dr. Sklar’s schedule. He has been fantastic so far about scheduling, so I’m hoping this won’t be an issue.
And finally a hair update. I actually still have a little hair left on my head, though who knows if this last go round will finally get rid of it. Martha ( my favorite nurse) told me it will actually start to grow back while I’m on my chemo break. I think I’ll really look like a freak! Luckily I still have I brows and lashes, so lets hope those don’t suddenly fall out at the end. My next chemo round will be a different drug, but will also cause hair loss, so I’m not through with the wigs and hats yet!
I’m off to see if the squirrels are awake.
I hope everyone has a great weekend!
Monique
Wednesday, November 11, 2009
Last One for Now!
I am gearing up for my last chemo treatment in this round tomorrow. Well, actually I'm kind of dreading it, but it is the last and I've made it through 3, so I'll get through this one too. And then a break! I'm hoping I'll have my surgery before Christmas. I'll be able to check on what the schedule is tomorrow when I see Carrie, Dr. Neubauer's assistant.
Of course because it is the day before chemo, I'm feeling good. I'm still really tired and have also been having trouble sleeping, but no nausea and I can read again. I'm going to ask for a different sleeping pill tomorrow, so hopefully that will help with the sleep. I wake up several times a night and then wake up at 4 and frequently can't go back to sleep. I'm sure it is the drugs because my mind just starts racing and can't relax and I can't get back to sleep. Luckily, its not your typical lying awake worrying, it is just whatever my mind seems to latch onto - even a book or article I've read. Its kind of hard to explain, but very annoying.
The only other thing that has been happening to me this week is my face has been very sensitive. My nose frequently feels kind of numb, sort of like I've had Novocain and it is wearing off. Then my skin feels windburned. Evidently, this is kind of normal because just like any chemical you put in your body, part of it evaporates out through your skin. I think I would prefer if it was alcohol from a night of drinking good wine rather than chemo chemicals though!
I hope you're having a spectacular day and if you are in KC, enjoying the weather!
Monique
Of course because it is the day before chemo, I'm feeling good. I'm still really tired and have also been having trouble sleeping, but no nausea and I can read again. I'm going to ask for a different sleeping pill tomorrow, so hopefully that will help with the sleep. I wake up several times a night and then wake up at 4 and frequently can't go back to sleep. I'm sure it is the drugs because my mind just starts racing and can't relax and I can't get back to sleep. Luckily, its not your typical lying awake worrying, it is just whatever my mind seems to latch onto - even a book or article I've read. Its kind of hard to explain, but very annoying.
The only other thing that has been happening to me this week is my face has been very sensitive. My nose frequently feels kind of numb, sort of like I've had Novocain and it is wearing off. Then my skin feels windburned. Evidently, this is kind of normal because just like any chemical you put in your body, part of it evaporates out through your skin. I think I would prefer if it was alcohol from a night of drinking good wine rather than chemo chemicals though!
I hope you're having a spectacular day and if you are in KC, enjoying the weather!
Monique
Saturday, November 7, 2009
Squirrel Monitor - New Career?
I was up with the squirrels this morning. Our neighbors to the north live in a large 2 story nest perched at the top of the tallest tree in the woods. I ‘d never actually seen them enter and exit their home as they are usually already running all over the trees by the time I notice them. I had thought they were a fairly dysfunctional family because they spend their day chasing and yelling at each other, but they looked pretty happy together this morning. I just hope they are gathering a few nuts for winter along the way.
Then the boys and I took the dogs for a walk and let Jim sleep in. A peaceful morning to be out and about at the lake.
Since I feel pretty good this morning, I’m trying to embrace the new me, which for now appears to be an early morning person. Once I get through the post chemo funk days, I feel great when I wake up in the morning. In fact its kind of weird, I’ve never been a morning person and now I start out wide awake and ready to get jump out of bed by 6:00 am or so. I’m even up before Miles who is our early riser. I’ll just have to see where this goes.
We got some good news this week on our second medical front – Michael’s broken arm. He has nearly regained all flexibility in his elbow. And even better is making huge progress in regaining the use of his fingers. The docs had said all along that the nerves would come back and sure enough it is finally happening. He is now able to make a fist and move his thumb quite a bit. The coldness in his fingers is now only above the top knuckle on his pointer finger. He has been on high blood pressure and anti seizure medicine for several months now to manage the pain for the nerve damage. This pill cocktail kind of scares me, so I’m really anxious to get him well and off of this medicine. He is down to one PT session a week, so hopefully we can get this wrapped up by Christmas.
Well, I’m gonna go back and monitor the squirrels. I hope everyone has a spectacular weekend!
Monique
Then the boys and I took the dogs for a walk and let Jim sleep in. A peaceful morning to be out and about at the lake.
Since I feel pretty good this morning, I’m trying to embrace the new me, which for now appears to be an early morning person. Once I get through the post chemo funk days, I feel great when I wake up in the morning. In fact its kind of weird, I’ve never been a morning person and now I start out wide awake and ready to get jump out of bed by 6:00 am or so. I’m even up before Miles who is our early riser. I’ll just have to see where this goes.
We got some good news this week on our second medical front – Michael’s broken arm. He has nearly regained all flexibility in his elbow. And even better is making huge progress in regaining the use of his fingers. The docs had said all along that the nerves would come back and sure enough it is finally happening. He is now able to make a fist and move his thumb quite a bit. The coldness in his fingers is now only above the top knuckle on his pointer finger. He has been on high blood pressure and anti seizure medicine for several months now to manage the pain for the nerve damage. This pill cocktail kind of scares me, so I’m really anxious to get him well and off of this medicine. He is down to one PT session a week, so hopefully we can get this wrapped up by Christmas.
Well, I’m gonna go back and monitor the squirrels. I hope everyone has a spectacular weekend!
Monique
Tuesday, November 3, 2009
I feel like . . . .?
You know the funny thing about all of this chemo stuff is I’m never sure what I feel like. I’ll be rolling along feeling great and then have to go lie down and sleep for a couple of hours. It really makes it hard to plan things!
After last Thursday’s treatment went pretty well, I thought I was doing ok. Friday night I even went to the Halloween Party at the Clubhouse and really enjoyed seeing and talking to everyone. Saturday morning I woke up and felt super and full of energy. I got some things done around the house and ran an errand. I thought this is wonderful! I’m really getting a hold of this treatment thing. Then I slept the rest of the day, and it kind of went down hill from there. I thought I felt ok when it came time to go trick or treating and so I went to a friend’s house for dinner while Jim took the boys around to all of the houses. I was able to talk and hang out for about 2 hours and then I hit a wall. I got so sleepy I was worried Jim wouldn’t get back in time before I fell asleep at the table.
On Sunday, I felt so so and then yesterday I didn’t feel very good at all. When I don’t feel good, it’s a drag. I can either sleep or stare at the TV. Reading is hard - I can’t seem to concentrate and can only kind of scan headlines or read a few sentences. It feels like motion sickness. And I hate to complain, but it gets very boring. Its like I’m sitting there and really want to do something, but anything I do makes me sick. I keep thinking if I ate something or drank something or took a walk – there has to be just the right thing and I’ll feel ok. However, it seems that only patience is what I need to just work through this thing.
But I'm back this morning, feel’n pretty darn good!
Whoo Hoo!
After last Thursday’s treatment went pretty well, I thought I was doing ok. Friday night I even went to the Halloween Party at the Clubhouse and really enjoyed seeing and talking to everyone. Saturday morning I woke up and felt super and full of energy. I got some things done around the house and ran an errand. I thought this is wonderful! I’m really getting a hold of this treatment thing. Then I slept the rest of the day, and it kind of went down hill from there. I thought I felt ok when it came time to go trick or treating and so I went to a friend’s house for dinner while Jim took the boys around to all of the houses. I was able to talk and hang out for about 2 hours and then I hit a wall. I got so sleepy I was worried Jim wouldn’t get back in time before I fell asleep at the table.
On Sunday, I felt so so and then yesterday I didn’t feel very good at all. When I don’t feel good, it’s a drag. I can either sleep or stare at the TV. Reading is hard - I can’t seem to concentrate and can only kind of scan headlines or read a few sentences. It feels like motion sickness. And I hate to complain, but it gets very boring. Its like I’m sitting there and really want to do something, but anything I do makes me sick. I keep thinking if I ate something or drank something or took a walk – there has to be just the right thing and I’ll feel ok. However, it seems that only patience is what I need to just work through this thing.
But I'm back this morning, feel’n pretty darn good!
Whoo Hoo!
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