Edema - swelling of the extremities and abdomen. I've been feeling kind of puffy in my arms and legs over the past few weeks. It's effecting walking, standing, dancing, etc. Last night, I could barely fit my feet into my jazz shoes. I'm working on getting past this too.
- Elisa, my acupuncturist, says my spleen isn't processing things right so she is focusing on that.
- Sarah, my personal pharmacist, recommended Diurex to alleviate water weight.
- Angela suggested that the fatigue, weight gain and ankle swelling could mean special 'gift from God'....
Yes, I will be getting a new set of 'twin girls' next week, thank you!!
Showing posts with label Chemo. Show all posts
Showing posts with label Chemo. Show all posts
Wednesday, April 13, 2011
Monday, March 28, 2011
Flick a switch
We finally all pile into the car and head down to Manhattan. I'm already wiped out, but have every intention of going through with my master plan - rest, show, sleep.
We pull up to the Marquis for what we thought would be valet parking and the lot is full!! Disappointing when trying to fulfill my master plan. I haven't used it much, but when I trudged and waddled my way up to the desk to talk to the gentleman sitting there, I played the Cancer card. Yup, I did. And, lo and behold, there was a space available! (It won't be the last time I use it!)
If you've never stayed at the Marquis, let's just say it's an enormous hotel in the middle of Time Square. It felt like I had to walk a mile to get to the huge bank of elevators that seem to take forever to appear to just to take us to the 8th floor to check in. Still more walking and waiting before we can make it to our room and I'm SOOOOO ready for the 'rest' portion of our night. It certainly was not enough.
Before we knew it, we had to head down to Juniors to meet Laura and Halley for dinner. I chose Juniors for 2 reasons - it was right next door and it has great Matzoh Ball Soup. It was a long wait for dinner but it was worth it.
I forgot to mention that it was also Night of 1000 Gowns in the ballroom that night. What's that you ask?? It's a drag charity event that will be televised on Bravo. Here's Bob and I going down the elevator with a 7 foot tall 'woman' with fabulous heels and 3 inch long eyelashes! Bob just couldn't resist....
Off to the show. Wonderland. A modern day take on the classic story. It was very well done with some great characters and songs. I think both Halley and I liked Maddie Hatter the most - the bad girl with legs a mile long and a voice that would knock you out. Or maybe it was the 8 girls that served as the caterpillar's legs - so cool and sexy. No wait! I nearly forgot the 'boy band' that backed up the White Night!!! I DID NOT STOP LAUGHING!! Overall a great show! Even though I sat in my seat all night just trying to hold it together, I was able to flick my switch and stand for the cast as they took their bows!! Worth the effort!
I escaped to my room to prepare for a not-so-good night sleep and had Bob, Laura and Halley head to Time Square. We needed to get a picture for posterity!
Breakfast and we were out .... I had acupuncture and didn't want to miss. It was the last effort of my day... I burned the candle at both ends and now was shot for the night. I took all the meds (new and old) and settled down to rest. I even took a long bath late at night and it seemed to help me sleep soundly. A good solid 5 hours - I'll take it!
We pull up to the Marquis for what we thought would be valet parking and the lot is full!! Disappointing when trying to fulfill my master plan. I haven't used it much, but when I trudged and waddled my way up to the desk to talk to the gentleman sitting there, I played the Cancer card. Yup, I did. And, lo and behold, there was a space available! (It won't be the last time I use it!)
If you've never stayed at the Marquis, let's just say it's an enormous hotel in the middle of Time Square. It felt like I had to walk a mile to get to the huge bank of elevators that seem to take forever to appear to just to take us to the 8th floor to check in. Still more walking and waiting before we can make it to our room and I'm SOOOOO ready for the 'rest' portion of our night. It certainly was not enough.
Before we knew it, we had to head down to Juniors to meet Laura and Halley for dinner. I chose Juniors for 2 reasons - it was right next door and it has great Matzoh Ball Soup. It was a long wait for dinner but it was worth it.
I forgot to mention that it was also Night of 1000 Gowns in the ballroom that night. What's that you ask?? It's a drag charity event that will be televised on Bravo. Here's Bob and I going down the elevator with a 7 foot tall 'woman' with fabulous heels and 3 inch long eyelashes! Bob just couldn't resist....
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| Bob and the Girls!!! |
I escaped to my room to prepare for a not-so-good night sleep and had Bob, Laura and Halley head to Time Square. We needed to get a picture for posterity!
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| Laura, Bob and Halley on the Red Steps |
Breakfast and we were out .... I had acupuncture and didn't want to miss. It was the last effort of my day... I burned the candle at both ends and now was shot for the night. I took all the meds (new and old) and settled down to rest. I even took a long bath late at night and it seemed to help me sleep soundly. A good solid 5 hours - I'll take it!
Thursday, March 24, 2011
Last, but not least!
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| 'No More Chemo' Cake!!!! |
Strangely excited for today! Today is my last chemotherapy treatment. It is hard to believe it's been 4 months since this started. It felt like such a long road and now I'm onto the last leg! My family is calling it my 'other marathon'. As Sarah said to me today -
You just hit the last leg of the marathon! That's a big deal :)
we're the losers on the side lines ringing the cowbells
The end is near and then it's recovery time... Just like Chicago
But with less snacks on route
I love those losers with the cowbells! Talk about a support system - I have the absolute best!! I think Sarah is also forgetting all the snacks I've indulged in along the way... therefore I've gained 10 pounds that I can't wait to get rid of!
I walked into the Dyson Center this morning and all my staff were high fiving me and celebrating my last treatment! What a special day... Barbara brought in a cake to share:
'No More Chemo' Cake!!!!
Great day.... getting tired.... more later....
Love to all my family and friends!!!! Thanks for making my day so special!
Thursday, March 10, 2011
My top 10 reasons to dislike 3am
1 - looking at the lovely milky color of my patchwork tongue
2 - the roof of my mouth feels like I just ate dry Captain Crunch
3 - thinking you have stuff stuck in your teeth but you can't feel it
4 - the taste of anything just makes you mad because you know what it SHOULD taste like
5 - feeling like I did tongue pushups
6 - swallowing and swallowing and swallowing
7 - brushing my teeth for the 15th time today
8 - wiping my mouth after eating and not feeling it - I'll call it the 'botox effect'
9 - worried I'll bite the inside of my mouth or lip and not know it
10 - clenching my teeth - I used to reserve this only for when I was stressed or during a run, now I can attribute the pain in my jaw to this too!
2 - the roof of my mouth feels like I just ate dry Captain Crunch
3 - thinking you have stuff stuck in your teeth but you can't feel it
4 - the taste of anything just makes you mad because you know what it SHOULD taste like
5 - feeling like I did tongue pushups
6 - swallowing and swallowing and swallowing
7 - brushing my teeth for the 15th time today
8 - wiping my mouth after eating and not feeling it - I'll call it the 'botox effect'
9 - worried I'll bite the inside of my mouth or lip and not know it
10 - clenching my teeth - I used to reserve this only for when I was stressed or during a run, now I can attribute the pain in my jaw to this too!
Tuesday, March 8, 2011
Pinky Toes
Another lousy night's sleep.... sleep for 30 minutes, bathroom break, toss, turn, sweat, open the door, check the heat, freeze, toes hurt, etc.
I understand the sweat/freeze thing - with chemotherapy I'm thrown into menopause. I've had those bouts off and on over the past few years. The severity of it last night was a change for me, but to be expected. It's hard to realize I'm past that phase of my life. I've gone over the 'mountain' from being more like my daughter to being more like my mother. I have all these boxes of 'feminine products' floating around the house, in my dance/gym bags, purses - how do you say to someone "Hey, by the way, I have a lot extra tampons that I don't need any more. Are you interested?" Not exactly dinner conversation.... lol
The surprise was my pinky toes! Just leaning on them or having the sheet touch them during the night was painful!! This morning, I got to thinking about it and just yesterday I clipped my toe nails for no apparent reason. I thought it might have been the shoes or even the socks I wore. I generally keep the nails very short because of dance and running. The shoes I wear for those activities are very tight and any kind of length to the nail just bothers me. I'm not a favorite in the pedicure chair, that's for sure! Anyway, the toes were bothering me yesterday, so I guess it started yesterday.
Now that I think about it, it must have really started with the last treatment!!! I was complaining to my friend Shelly that I must be texting/tweeting too much because my thumb nails are hurting me! That statement alone puts me into another stratosphere - the thought that it was the action of hitting the phone keypad could be causing pain is a true sign of this day and age we live in, that's for sure. Feeling my fingernails ache today was what convinced me there was something else going on.
Pinky toes and thumb nails made me google it - peripheral neuropathy. That's the name for it. My Onc had asked me if I was feeling numbness, but I hadn't been. I now can say yes, but I wouldn't call it numb, just slightly painful, like an ache. My toes feel like I wore tight shoes and my fingernails feel like I closed a drawer on them. Nothing all that drastic - yet. There are all kinds of other nasty things that accompany this - I'll keep you posted if I get the really gross stuff. Aren't you excited??
How ridiculous is it that I am complaining about my pinky toes!!??!! Pretty ridiculous in the whole scheme of things!
I understand the sweat/freeze thing - with chemotherapy I'm thrown into menopause. I've had those bouts off and on over the past few years. The severity of it last night was a change for me, but to be expected. It's hard to realize I'm past that phase of my life. I've gone over the 'mountain' from being more like my daughter to being more like my mother. I have all these boxes of 'feminine products' floating around the house, in my dance/gym bags, purses - how do you say to someone "Hey, by the way, I have a lot extra tampons that I don't need any more. Are you interested?" Not exactly dinner conversation.... lol
The surprise was my pinky toes! Just leaning on them or having the sheet touch them during the night was painful!! This morning, I got to thinking about it and just yesterday I clipped my toe nails for no apparent reason. I thought it might have been the shoes or even the socks I wore. I generally keep the nails very short because of dance and running. The shoes I wear for those activities are very tight and any kind of length to the nail just bothers me. I'm not a favorite in the pedicure chair, that's for sure! Anyway, the toes were bothering me yesterday, so I guess it started yesterday.
Now that I think about it, it must have really started with the last treatment!!! I was complaining to my friend Shelly that I must be texting/tweeting too much because my thumb nails are hurting me! That statement alone puts me into another stratosphere - the thought that it was the action of hitting the phone keypad could be causing pain is a true sign of this day and age we live in, that's for sure. Feeling my fingernails ache today was what convinced me there was something else going on.
Pinky toes and thumb nails made me google it - peripheral neuropathy. That's the name for it. My Onc had asked me if I was feeling numbness, but I hadn't been. I now can say yes, but I wouldn't call it numb, just slightly painful, like an ache. My toes feel like I wore tight shoes and my fingernails feel like I closed a drawer on them. Nothing all that drastic - yet. There are all kinds of other nasty things that accompany this - I'll keep you posted if I get the really gross stuff. Aren't you excited??
How ridiculous is it that I am complaining about my pinky toes!!??!! Pretty ridiculous in the whole scheme of things!
Monday, March 7, 2011
Here I am writing of my tales for all to see.
As predicted, it was an easier weekend than usual... the problem with that is I pushed myself to do too much!
Alex and Sarah were home and I wanted to spend every minute I could with them. I cooked a fantastic batch of sauce for dinner that night, if I do say so myself! We had friends join us for it and a hot game of Mexican Train. Katie came too and she brought along the good stuff - Whipped Vodka - pretty good stuff! We had a fun night for sure.
We all split up the next day - kids went to their respective homes, Bob went off to the car show with his dad and I went to see Elisa for my acupuncture treatment.
The muscles from my hips up through my spine all the way to the base of my scull were sore due to the neulasta shot I had gotten on Friday. I wasn't as dry as usual and the chest tightness was less which made me feel better overall. I took a short nap on Saturday afternoon to prepare for the night ahead, but it wasn't enough. I was really wiped out on Sunday and shouldn't have driven myself to Acu. but I did. I headed straight home afterward and spent the rest of the day sofa-bound worrying about Sarah and her 10 hour drive back to Pittsburgh... thank god she got back safely!
I finally got to bed and slept off and on during the night - this was the night that everything flushed out from the last few days - EVERY 2 HOURS!!! I was more exhausted when I woke up! I prepped for the day and immediately layed down for 2 hours before I had my massage. The magical massage that made me human again! I was able to get home and back to work for a few hours ...
and here I am writing of my tales for all to see.
Alex and Sarah were home and I wanted to spend every minute I could with them. I cooked a fantastic batch of sauce for dinner that night, if I do say so myself! We had friends join us for it and a hot game of Mexican Train. Katie came too and she brought along the good stuff - Whipped Vodka - pretty good stuff! We had a fun night for sure.
We all split up the next day - kids went to their respective homes, Bob went off to the car show with his dad and I went to see Elisa for my acupuncture treatment.
The muscles from my hips up through my spine all the way to the base of my scull were sore due to the neulasta shot I had gotten on Friday. I wasn't as dry as usual and the chest tightness was less which made me feel better overall. I took a short nap on Saturday afternoon to prepare for the night ahead, but it wasn't enough. I was really wiped out on Sunday and shouldn't have driven myself to Acu. but I did. I headed straight home afterward and spent the rest of the day sofa-bound worrying about Sarah and her 10 hour drive back to Pittsburgh... thank god she got back safely!
I finally got to bed and slept off and on during the night - this was the night that everything flushed out from the last few days - EVERY 2 HOURS!!! I was more exhausted when I woke up! I prepped for the day and immediately layed down for 2 hours before I had my massage. The magical massage that made me human again! I was able to get home and back to work for a few hours ...
and here I am writing of my tales for all to see.
Friday, March 4, 2011
#5
Things went a little smoother this time. Without the Adriamycin, it seemed to cut off 30 minutes or so. It seems all meds that I take have an effect on me even down to the saline. I can feel each and every one of them pulse through my veins. The nurses say I'm sensitive - sure, I'm sensitive alright!
I was quite tired through the infusion, but didn't seem to sleep much. Couldn't really open my eyes either. Just listened to what was going on around me. If I did open my eyes, I couldn't talk because nothing that made any sense came out so I just kept my mouth shut and smiled from time to time. My drug induced alter-ego.
The rest of the day was a day of rest. Nothing more than sleeping, eating and tv. My knees were feeling very stiff and invisibly swollen. But when I woke up, I they felt much better probably because I was laying flat. On top of that, I was pretty functional for the entire morning. I was able to check into work and do a little for my clients. Sarah made me one of my all-time favorite breakfasts - Eggs Benedict - it was great and this was her first try!!! She went off to go shopping with Phyllis and Alex came home to take me to my Nuelasta shot.
Alex and Bob waited outside while I ran in to have my shot which usually takes just a few minutes. It was pretty crowded in there so it definitely took longer. When I was leaving, the receptionist asked me to wait because someone was headed down to meet me. She referred to her as a 'breast navigator'! I have never heard of that in my life!! A few minutes later Linda appeared and nicely introduced herself and asked if I needed anything. She is available to help me with anything I may have needed to get me through the end. My friend Barbara asked her to come to see me - friends in high places! I explained where I was in the process and if I needed anything I would be sure to contact her. So many nice people out there caring about me. Thank you all.
I was beat when I got home. I knew I needed to lay down as my chest was hurting and I was tired. I slept longer than I expected and I didn't do anything tonight as planned. Bob and Sarah went to services and Alex and I stayed home and watched a movie. Plans are always flexible these days.
I was quite tired through the infusion, but didn't seem to sleep much. Couldn't really open my eyes either. Just listened to what was going on around me. If I did open my eyes, I couldn't talk because nothing that made any sense came out so I just kept my mouth shut and smiled from time to time. My drug induced alter-ego.
The rest of the day was a day of rest. Nothing more than sleeping, eating and tv. My knees were feeling very stiff and invisibly swollen. But when I woke up, I they felt much better probably because I was laying flat. On top of that, I was pretty functional for the entire morning. I was able to check into work and do a little for my clients. Sarah made me one of my all-time favorite breakfasts - Eggs Benedict - it was great and this was her first try!!! She went off to go shopping with Phyllis and Alex came home to take me to my Nuelasta shot.
Alex and Bob waited outside while I ran in to have my shot which usually takes just a few minutes. It was pretty crowded in there so it definitely took longer. When I was leaving, the receptionist asked me to wait because someone was headed down to meet me. She referred to her as a 'breast navigator'! I have never heard of that in my life!! A few minutes later Linda appeared and nicely introduced herself and asked if I needed anything. She is available to help me with anything I may have needed to get me through the end. My friend Barbara asked her to come to see me - friends in high places! I explained where I was in the process and if I needed anything I would be sure to contact her. So many nice people out there caring about me. Thank you all.
I was beat when I got home. I knew I needed to lay down as my chest was hurting and I was tired. I slept longer than I expected and I didn't do anything tonight as planned. Bob and Sarah went to services and Alex and I stayed home and watched a movie. Plans are always flexible these days.
Wednesday, March 2, 2011
Today is my Friday!
Tried to finish up all my work for the week today... that didn't happen the way I wanted it to, but I'll figure it out. We decided to go to a movie and hit one of our favorite restaurants (Bonsai) before with Sarah. We met our friends Barbara and Allen their too - it was good to be out especially knowing I'll be home for a week or so.
Dinner and movie tonight - drugs and sleep tomorrow.
I am doing a little prep work today - Oatmeal, prunes, colace, 'Smooth Move' tea - I'm trying anything to not feel like I did last time. I even went to Elisa to get stuck with some needles in all the right places to keep things moving!!!
We'll see how it goes.... hahahahahahaha!!!
Dinner and movie tonight - drugs and sleep tomorrow.
I am doing a little prep work today - Oatmeal, prunes, colace, 'Smooth Move' tea - I'm trying anything to not feel like I did last time. I even went to Elisa to get stuck with some needles in all the right places to keep things moving!!!
We'll see how it goes.... hahahahahahaha!!!
Sunday, February 27, 2011
The Coffee is TERRIBLE!!!
I've got a lot to write about after my last post on Wednesday....
I went to work with Bob on Thursday. I had been fighting a little head cold during the week but felt like I was improving. Even with that I was quite tired all day and really wanted to leave on time. We had planned to go to DeCicco's (our new favorite grocery store) that night to pick up some things for the freezer. Treatment cycle #5 is planned for this coming Thursday (3/3) so I need to have everything set in the house for the following week and a half. Also, Sarah and Alex will both be coming home for a few days - the best news of the week!!! Anyway, DeCicco's also has lots of prepared food with tables and we decided we would eat dinner there too. I felt so tired that Bob offered to just go home instead but I insisted we go anyway.
As usual, it was a great trip to the DeCicco's!! Yes, this has become a highlight of life and would suggest a stop there to anyone... think of it as Adam's on steroids. Exit 19 off of 84 --- end of commercial!!!
By the time we got the bags in the house and put away, my heart was racing and pounding in my chest. I got up the stairs to our bedroom and sat in my favorite This End Up chair to calm down. Yeah, I still have one. I usually only feel this way during the week after my treatment - but not even this way. During that week I would feel a heaviness in my chest, a sign of fatigue, as I've described in the past. This was different. Once my heart stopped racing, it was continually pounding in my chest. Palpitations. Then the racing would pick up again and then slow down. I figured I was just really tired and needed a good night sleep.
I did sleep some, waking occasionally, as usual. Each time I noted the feeling in my chest hadn't gone away. When I woke for the day at 6am, I layed there feeling the fluttering of my heart. Another feeling to add to the fast racing, the slow pounding and now the fluttering palpitations. Not sure what to do, I decided to try to ignore it and get ready for work. I already told Bob I wanted to take my own car because I felt so tired the day before that I might want to come home early to rest and then pick things up from there. I did my 'thang' - shower, breakfast, animals, etc.
I thought about working from home but knew I had Lynn coming in and needed to see her, not just for business reasons, but because she's just one of the best people I know and wanted to share our lives of the past few weeks. I got to the car and when I finally sat down I finally realized the pounding and racing in my chest had not gotten any better. I could say worse and almost continuous. Call the doctor, I finally said to myself. I sat at the bottom of my driveway trying to get through to the Poughkeepsie office. At least 3 people tried to patch me through, but I ended up nowhere. I finally gave up trying and headed into the office to a 10am meeting I had with a client. I slept through our meeting on Monday and had to make it up to her.
Sandy, my client, is very nice. She knows my situation and has sent me a lovely note of encouragement already. She opens our conversation with 'how are you feeling?' and I'm speechless. I knew I had something going on that day, but was it really necessary to share it with my client? I simply said 'Ugh - it's always something! Let's not talk about it...' She was very understanding and just talked business for 2 hours. While it was distracting for me, I did pay attention to the feelings in my chest and that they were not going away.
When I finished, I stood up and went to talk to Lynn. As I stood there, I had several waves of palpitations and added dizziness to the mix now.... yeah, I was getting a little nervous. We ordered lunch and it seemed to make me feel better. Dr. Rubin and Tammy take lunch at noon too and I knew I wouldn't be able to reach them anyway so I waited until after. Palpitations were back. It was approx. 1:30 when I spoke with Tammy describing my feelings of the past 18 hours and she was truly concerned. She quickly hung up with me to contact Dr. Rubin and by 2 I was talking to him myself. After quizzing me about everything, he convinced me to head to the ER for precautionary reasons. He closed with 'I wouldn't want you have a heart attack or anything' - I think I'm close to the exact quote. That sentence scared the crap out of me....
I had every intention of closing up shop for myself and heading to the ER since I had my own car. Bob was incredibly busy Friday - he had told me so that morning and I didn't want to add any more to his stress. My last trip to the bathroom before putting my coat on and my cell is ringing from Vassar. This time it's Dr. Keleher - breast surgeon. She's kindly calling me to offer a speak to a fellow survivor who's willing to share her experience with the surgery and after. During our last meeting, she mentioned this option knowing she has a list of people and described the woman she wanted to connect me to as 'not crazy like you' - I really appreciated that comment!!!
I tell her what's going on and she agrees I should head to the ER quickly. Then comes "You are not driving yourself, are you?" Of course I am, but she convinces me to tell Bob and have him drive me. I get to Bob and try to underplay it all but it's fruitless. At this point, I'm pretty worried and he immediately is too. He drops all afternoon appointments and before I know it we are in the car headed up to Poughkeepsie. Bob is calmly talking to me trying to ease my fear of having a heart attack. A heart attack seemed more real to me that this thing growing, or formerly-growing in my breast. I could actually feel something going on with this situation where my tumor was silent. Sitting in the car with my heart visibly pounding through my chest, I was emotional. Scared. It hasn't happened often.
The ER at Vassar has come a long way. While I haven't been there for myself EVER, I've delivered my family and friends there many times. It has much improved and I'm taken in immediately. One nurse is asking me questions and at the same time I'm getting an EKG from another in triage. I look up at my nurse and realize she looks familiar. I ask 'Did you ever dance?' and sure enough she has. It was Christine. I had been her teacher at least 15 years ago and knew her mother Lucy from running around Beacon all my life. My dancing connection never fails...
I'm whisked into a room alone because they don't want my immunity to be compromised. I really felt confident with my 'team' of Dr. John and Sarah. They evaluated me and ordered a bunch of other tests - CT scan, ultrasound, blood work, chest xray, I think that's it. They are looking for some sign of heart distress or blood clot. Everything comes back negative except for the blood... I can't remember what the name of the thing is they were looking for, but it came back positive. This doesn't mean the 'worst' just that it was a 50/50 chance I had something floating around. After all these come back, Dr. John (who's last name is some god awful long Dutch thing that he is tired of trying to pronounce for people so he just goes by 'John') talks to Dr. Rubin and they agree I should be admitted for observation.
By now, Barbara knows about my visit to the hospital. We were to have dinner with she and Allen and we had to cancel. In the conversation, Bob has to tell why.... let's just say Barbara is on the phone getting me a room ASAP. Unbelievable. Someone from administration comes down to greet me and ask if I need anything. At first I say no, but I realize I'm sleeping there now and I came straight from work. I know they'll supply soap and a toothbrush. What is really bothering me is my wig!!! I ask if they have some sort of hat I could wear during the night since I will take it off to sleep. Not only do I not want to scare the crap out of my nurse, my noggin gets pretty cold from time to time!! Before I know it, she's back with a cotton adjustable hat with pink bc ribbons all over it... perfect and so appreciated!
I'm put on the cardiac floor instead of the cancer floor because of the heart monitoring. I'm pretty tired so I encouraged Bob to leave and Barbara to stay home. I was in the right place if anything happened and there was nothing they could do besides watch me sleep. I'm in a private room with a tv, the heart monitor and the dreaded saline drip and high hopes of sleeping... yeah right. I slept a little, but nothing like usual. Somewhere in the middle of the night, they decide I should have the calf massaging things that expand at intervals to promote blood flow. Even my nurse Maria didn't understand why since I was mobile and walking myself to the bathroom with no sign of edema. Either way, they weren't too bad after all and I did sleep a bit more after.
All night, I am still feeling the palpitations - more fluttering while laying in the bed and pounding when I get up to make my way to the bathroom or even shift to get at drink of water. They continue in the morning while I wait to be seen by the doctor. Now it's 2 doctors I'm waiting for - Dr. Rubin and a cardiologist. In the meantime, I'm brought breakfast. I'm served a 'regular' diet... non-descript omelet, bagel, cereal and coffee. Too much food, too much really lousy flavorless food. Have I mentioned the coffee was terrible??? The worst I ever had? I drank what I could. Why? Because it was there... but within minutes of swallowing my KiSA (Knight in Shining Armor) Bob brings me McDonald's large coffee - what a relief!!!
I finally see Dr. Rubin at 1pm. It's Saturday, so there is no big rush for them to get through their rounds. I'm so happy to see him, but he's not so happy to see me in this situation. We talk all about what's going on and he's very concerned with the effects of the Adriamycin on my system - specifically my heart. It is known to have cardiotoxic effects and I've felt those early on as I've described the heaviness I would feel in my chest after chemo. But this episode was very alarming to him. He spoke with colleagues about lowering my dosage to achieve the result we wanted and they agreed. I've made it through 4 cycles of it and it would be eliminated from the next 2. Dr. R talked all numbers - mg. per meter squared, etc. The dosage I've received is close enough and more than most can tolerate. This cycle I will not receive all 3 chemo drugs only 2 - Taxotere and Cytoxcin. In a way, I'm relieved.
In the meantime, the cardiologist has come in. He's reviewed all tests and talks to me about everything going on with me. He and Dr. R are discussing my case and they've come to an agreement - no more tests and I can go home. The tests indicate its a bigeminy arrhythmia - normal sinus rhythm followed by an extra beat. People live with this all the time and I can too. It more than likely will go away when I'm done with chemo. Even with this diagnosis, Dr. R wants to stop the Adriamycin for fear of anything more effecting my heart.
After waiting for 2.5 hours, I'm finally discharged at almost 4pm. A couple of gripes - first, there is only one doctor in the hospital on Saturdays that handle all admissions and discharges!!! That to me is way WAY understaffed!!! Second, the nurse I had on Saturday. Once she realized I was not the wife of Dr. Ritter and not in physical distress, so was not to be found. I stayed connected to a heart monitor and an intravenous drip even though I was being discharged. All I wanted to do was get dressed and I waited and waited finally alerting a technician a few times to get the nurse there. Again, doing the same thing to get myself out the door before nightfall. I really hate to complain since I know I'm not the only one needing care, but it did cause undue stress. Even a visit to my room to discuss it would have been helpful, but nothing. Water under the bridge...
We went for a burger and headed home. Yesterday, the walk to the door of the restaurant caused palpitations. Stayed home last night and relaxed with a bath and a movie. Perfect prescription because today I haven't had one!!! Walking around the house, up and down the stairs and not feeling anything like I did before. I'm a little tired and plan on taking it easy the rest of today hoping that experience is behind me.
I went to work with Bob on Thursday. I had been fighting a little head cold during the week but felt like I was improving. Even with that I was quite tired all day and really wanted to leave on time. We had planned to go to DeCicco's (our new favorite grocery store) that night to pick up some things for the freezer. Treatment cycle #5 is planned for this coming Thursday (3/3) so I need to have everything set in the house for the following week and a half. Also, Sarah and Alex will both be coming home for a few days - the best news of the week!!! Anyway, DeCicco's also has lots of prepared food with tables and we decided we would eat dinner there too. I felt so tired that Bob offered to just go home instead but I insisted we go anyway.
As usual, it was a great trip to the DeCicco's!! Yes, this has become a highlight of life and would suggest a stop there to anyone... think of it as Adam's on steroids. Exit 19 off of 84 --- end of commercial!!!
By the time we got the bags in the house and put away, my heart was racing and pounding in my chest. I got up the stairs to our bedroom and sat in my favorite This End Up chair to calm down. Yeah, I still have one. I usually only feel this way during the week after my treatment - but not even this way. During that week I would feel a heaviness in my chest, a sign of fatigue, as I've described in the past. This was different. Once my heart stopped racing, it was continually pounding in my chest. Palpitations. Then the racing would pick up again and then slow down. I figured I was just really tired and needed a good night sleep.
I did sleep some, waking occasionally, as usual. Each time I noted the feeling in my chest hadn't gone away. When I woke for the day at 6am, I layed there feeling the fluttering of my heart. Another feeling to add to the fast racing, the slow pounding and now the fluttering palpitations. Not sure what to do, I decided to try to ignore it and get ready for work. I already told Bob I wanted to take my own car because I felt so tired the day before that I might want to come home early to rest and then pick things up from there. I did my 'thang' - shower, breakfast, animals, etc.
I thought about working from home but knew I had Lynn coming in and needed to see her, not just for business reasons, but because she's just one of the best people I know and wanted to share our lives of the past few weeks. I got to the car and when I finally sat down I finally realized the pounding and racing in my chest had not gotten any better. I could say worse and almost continuous. Call the doctor, I finally said to myself. I sat at the bottom of my driveway trying to get through to the Poughkeepsie office. At least 3 people tried to patch me through, but I ended up nowhere. I finally gave up trying and headed into the office to a 10am meeting I had with a client. I slept through our meeting on Monday and had to make it up to her.
Sandy, my client, is very nice. She knows my situation and has sent me a lovely note of encouragement already. She opens our conversation with 'how are you feeling?' and I'm speechless. I knew I had something going on that day, but was it really necessary to share it with my client? I simply said 'Ugh - it's always something! Let's not talk about it...' She was very understanding and just talked business for 2 hours. While it was distracting for me, I did pay attention to the feelings in my chest and that they were not going away.
When I finished, I stood up and went to talk to Lynn. As I stood there, I had several waves of palpitations and added dizziness to the mix now.... yeah, I was getting a little nervous. We ordered lunch and it seemed to make me feel better. Dr. Rubin and Tammy take lunch at noon too and I knew I wouldn't be able to reach them anyway so I waited until after. Palpitations were back. It was approx. 1:30 when I spoke with Tammy describing my feelings of the past 18 hours and she was truly concerned. She quickly hung up with me to contact Dr. Rubin and by 2 I was talking to him myself. After quizzing me about everything, he convinced me to head to the ER for precautionary reasons. He closed with 'I wouldn't want you have a heart attack or anything' - I think I'm close to the exact quote. That sentence scared the crap out of me....
I had every intention of closing up shop for myself and heading to the ER since I had my own car. Bob was incredibly busy Friday - he had told me so that morning and I didn't want to add any more to his stress. My last trip to the bathroom before putting my coat on and my cell is ringing from Vassar. This time it's Dr. Keleher - breast surgeon. She's kindly calling me to offer a speak to a fellow survivor who's willing to share her experience with the surgery and after. During our last meeting, she mentioned this option knowing she has a list of people and described the woman she wanted to connect me to as 'not crazy like you' - I really appreciated that comment!!!
I tell her what's going on and she agrees I should head to the ER quickly. Then comes "You are not driving yourself, are you?" Of course I am, but she convinces me to tell Bob and have him drive me. I get to Bob and try to underplay it all but it's fruitless. At this point, I'm pretty worried and he immediately is too. He drops all afternoon appointments and before I know it we are in the car headed up to Poughkeepsie. Bob is calmly talking to me trying to ease my fear of having a heart attack. A heart attack seemed more real to me that this thing growing, or formerly-growing in my breast. I could actually feel something going on with this situation where my tumor was silent. Sitting in the car with my heart visibly pounding through my chest, I was emotional. Scared. It hasn't happened often.
The ER at Vassar has come a long way. While I haven't been there for myself EVER, I've delivered my family and friends there many times. It has much improved and I'm taken in immediately. One nurse is asking me questions and at the same time I'm getting an EKG from another in triage. I look up at my nurse and realize she looks familiar. I ask 'Did you ever dance?' and sure enough she has. It was Christine. I had been her teacher at least 15 years ago and knew her mother Lucy from running around Beacon all my life. My dancing connection never fails...
I'm whisked into a room alone because they don't want my immunity to be compromised. I really felt confident with my 'team' of Dr. John and Sarah. They evaluated me and ordered a bunch of other tests - CT scan, ultrasound, blood work, chest xray, I think that's it. They are looking for some sign of heart distress or blood clot. Everything comes back negative except for the blood... I can't remember what the name of the thing is they were looking for, but it came back positive. This doesn't mean the 'worst' just that it was a 50/50 chance I had something floating around. After all these come back, Dr. John (who's last name is some god awful long Dutch thing that he is tired of trying to pronounce for people so he just goes by 'John') talks to Dr. Rubin and they agree I should be admitted for observation.
By now, Barbara knows about my visit to the hospital. We were to have dinner with she and Allen and we had to cancel. In the conversation, Bob has to tell why.... let's just say Barbara is on the phone getting me a room ASAP. Unbelievable. Someone from administration comes down to greet me and ask if I need anything. At first I say no, but I realize I'm sleeping there now and I came straight from work. I know they'll supply soap and a toothbrush. What is really bothering me is my wig!!! I ask if they have some sort of hat I could wear during the night since I will take it off to sleep. Not only do I not want to scare the crap out of my nurse, my noggin gets pretty cold from time to time!! Before I know it, she's back with a cotton adjustable hat with pink bc ribbons all over it... perfect and so appreciated!
I'm put on the cardiac floor instead of the cancer floor because of the heart monitoring. I'm pretty tired so I encouraged Bob to leave and Barbara to stay home. I was in the right place if anything happened and there was nothing they could do besides watch me sleep. I'm in a private room with a tv, the heart monitor and the dreaded saline drip and high hopes of sleeping... yeah right. I slept a little, but nothing like usual. Somewhere in the middle of the night, they decide I should have the calf massaging things that expand at intervals to promote blood flow. Even my nurse Maria didn't understand why since I was mobile and walking myself to the bathroom with no sign of edema. Either way, they weren't too bad after all and I did sleep a bit more after.
All night, I am still feeling the palpitations - more fluttering while laying in the bed and pounding when I get up to make my way to the bathroom or even shift to get at drink of water. They continue in the morning while I wait to be seen by the doctor. Now it's 2 doctors I'm waiting for - Dr. Rubin and a cardiologist. In the meantime, I'm brought breakfast. I'm served a 'regular' diet... non-descript omelet, bagel, cereal and coffee. Too much food, too much really lousy flavorless food. Have I mentioned the coffee was terrible??? The worst I ever had? I drank what I could. Why? Because it was there... but within minutes of swallowing my KiSA (Knight in Shining Armor) Bob brings me McDonald's large coffee - what a relief!!!
I finally see Dr. Rubin at 1pm. It's Saturday, so there is no big rush for them to get through their rounds. I'm so happy to see him, but he's not so happy to see me in this situation. We talk all about what's going on and he's very concerned with the effects of the Adriamycin on my system - specifically my heart. It is known to have cardiotoxic effects and I've felt those early on as I've described the heaviness I would feel in my chest after chemo. But this episode was very alarming to him. He spoke with colleagues about lowering my dosage to achieve the result we wanted and they agreed. I've made it through 4 cycles of it and it would be eliminated from the next 2. Dr. R talked all numbers - mg. per meter squared, etc. The dosage I've received is close enough and more than most can tolerate. This cycle I will not receive all 3 chemo drugs only 2 - Taxotere and Cytoxcin. In a way, I'm relieved.
In the meantime, the cardiologist has come in. He's reviewed all tests and talks to me about everything going on with me. He and Dr. R are discussing my case and they've come to an agreement - no more tests and I can go home. The tests indicate its a bigeminy arrhythmia - normal sinus rhythm followed by an extra beat. People live with this all the time and I can too. It more than likely will go away when I'm done with chemo. Even with this diagnosis, Dr. R wants to stop the Adriamycin for fear of anything more effecting my heart.
After waiting for 2.5 hours, I'm finally discharged at almost 4pm. A couple of gripes - first, there is only one doctor in the hospital on Saturdays that handle all admissions and discharges!!! That to me is way WAY understaffed!!! Second, the nurse I had on Saturday. Once she realized I was not the wife of Dr. Ritter and not in physical distress, so was not to be found. I stayed connected to a heart monitor and an intravenous drip even though I was being discharged. All I wanted to do was get dressed and I waited and waited finally alerting a technician a few times to get the nurse there. Again, doing the same thing to get myself out the door before nightfall. I really hate to complain since I know I'm not the only one needing care, but it did cause undue stress. Even a visit to my room to discuss it would have been helpful, but nothing. Water under the bridge...
We went for a burger and headed home. Yesterday, the walk to the door of the restaurant caused palpitations. Stayed home last night and relaxed with a bath and a movie. Perfect prescription because today I haven't had one!!! Walking around the house, up and down the stairs and not feeling anything like I did before. I'm a little tired and plan on taking it easy the rest of today hoping that experience is behind me.
Wednesday, February 16, 2011
Delicate Situation...
I've shared and shared so much of myself through this blog, but I have not told all because, honestly, some things are a little too embarrassing to just put out there - even for me. This has bothered me so much this time, I'm compelled to write about it to help the rest of those that follow my blog and are inflicted with this disease in hopes it keeps things moving... in some way makes the ultimate outcome smoother. Ok - I'll stop.
Chemotherapy is that mixture of drugs whose job it is to kill the cancer cells. It also does lots of other things like make your hair fall out, dry up your skin, cause nausea, mouth sores, etc. Not pretty - you get the picture. I tried to heed the warnings of feeling thirsty by drinking more, but when you are totally overloaded with saline during the infusion, it's really difficult. Your mouth is so dry that even a little water can help. But, a little water is not going to help the bigger problem. Elisa, my acupucturist, put it the best. Chemo is like heat... it sucks the water right out of me - from my mouth, my skin and, yes, my intestines.
Dr. Rubin warned I might get diarrhea as a side effect of the drugs. I didn't think that would be too bad for me since I'm prone to constipation anyway and maybe it would balance it out. BUT - I was beyond constipated with each treatment and after this time is was unbearable. I complained of being so uncomfortable this time because of the bloated feeling caused by the saline, but instead I now believe its the effects of being totally constipated. TOTALLY!
I understand if you stop reading now...
Chemotherapy is that mixture of drugs whose job it is to kill the cancer cells. It also does lots of other things like make your hair fall out, dry up your skin, cause nausea, mouth sores, etc. Not pretty - you get the picture. I tried to heed the warnings of feeling thirsty by drinking more, but when you are totally overloaded with saline during the infusion, it's really difficult. Your mouth is so dry that even a little water can help. But, a little water is not going to help the bigger problem. Elisa, my acupucturist, put it the best. Chemo is like heat... it sucks the water right out of me - from my mouth, my skin and, yes, my intestines.
Dr. Rubin warned I might get diarrhea as a side effect of the drugs. I didn't think that would be too bad for me since I'm prone to constipation anyway and maybe it would balance it out. BUT - I was beyond constipated with each treatment and after this time is was unbearable. I complained of being so uncomfortable this time because of the bloated feeling caused by the saline, but instead I now believe its the effects of being totally constipated. TOTALLY!
I understand if you stop reading now...
Tuesday, February 15, 2011
Difficult
I've had some difficulty keeping up with this blog this week. As I've experienced as I've gone along, things are not getting easier but harder. Longer to recoup, but recoup I will!
A good part of Sunday night was spent being hungry and hitting the bathroom. I continue to expel water every 2 hours because of the saline, I think. Hunger? The only thing I can figure to cause this is the extra Zofran I took on Saturday to curb the nausea. I won't be doing that again!
Yesterday, I desperately tried to work some in the morning, but couldn't keep my mind on anything. I was pretty well rested because of my 'sleep' Sunday, but I had a terrible taste in my mouth and felt 'hungry' in some weird sort of way. I would eat one mouthful and it would taste good, then immediately not be able to taste it again. I went through my day like this. I think I actually overcompensated by eating literally one or two bites of a dozen different things.
I went to see Heather, my massage therapist, to try to alleviate some of the back pain associated with the neulasta. She spent time working out my kinks and pains. I felt entirely renewed when I left. It is amazing
A good part of Sunday night was spent being hungry and hitting the bathroom. I continue to expel water every 2 hours because of the saline, I think. Hunger? The only thing I can figure to cause this is the extra Zofran I took on Saturday to curb the nausea. I won't be doing that again!
Yesterday, I desperately tried to work some in the morning, but couldn't keep my mind on anything. I was pretty well rested because of my 'sleep' Sunday, but I had a terrible taste in my mouth and felt 'hungry' in some weird sort of way. I would eat one mouthful and it would taste good, then immediately not be able to taste it again. I went through my day like this. I think I actually overcompensated by eating literally one or two bites of a dozen different things.
I went to see Heather, my massage therapist, to try to alleviate some of the back pain associated with the neulasta. She spent time working out my kinks and pains. I felt entirely renewed when I left. It is amazing
Saturday, February 12, 2011
#4
It seems now every treatment experience is a little different.
Thursday, we arrived a little early hoping to get started early. I had an appointment with my geneticist at 4pm and I wanted to be sure to make it. I made the decision to have the gene testing done to determine if I'm carrying it or not for 2 reasons - for me and Sarah (and Alex too). If I am carrying it, I'll have a double mastectomy immediately and get it over with. For Sarah, she now has the knowledge that she is likely to be carrying it too and it will help her to make her own decisions in the future.
But that didn't happen. I had my blood work done on Tuesday in anticipation of this day so we could start immediately, but the results were not at Dyson, so Kathy, my nurse, had to hunt them down. This delayed us almost an hour. When I saw Dr. Rubin during the off week, I complained that I had too much saline (2 bags instead of 1) and it made me very uncomfortable for several days afterward. He said many of the drugs do not need to be administered with the saline. I made sure I discussed this with Kathy ahead of time. She has a different methodology than the other nurses. She adminsitered 3/4 of saline bag first then followed it with the pre-meds, etc. This in itself slowed us down more. When 3:45pm hit, I had Bob go up to Kelli the Geneticist and reschedule. It wasn't until 5:30 that we left.
Sure some parts of my day were the same. Needles and drugs, Barbara and Bob. Shelly couldn't make it in this time - she had enough going on in her own life, that's for sure! But she was definitely there in spirit as she texted and im'd me throughout the day. What was different for me was the lack of sleep. Usually I go to sleep when I'm hit with the benedryl but not this time. I felt what would be described as restless leg syndrom, but I felt it all over my body. Although I was tired, I couldn't settle down to sleep and relax. I would be jolted up feeling jittery and uncomfortable. I had sent Bob out for a bit after Barbara had left. He was feeling anxious about the slowdown and it wasn't helping me. It was very crowded in the infusion room too. When we got there, there were no 'corner' chairs available, so there was a shortage of power for all our electronics. I had wanted to try to use Alex's Brain Scan pieces to try to help me sleep and did... but even that didn't help. I did manage a short nap when Bob came back, but not enough. I went home and settled in to rest and read for the night.
Friday wasn't much better. I managed a little work but then I had to lay down for a while. Shelly stopped by with fries with lots of salt - she knows that I can't taste anything for the next few days and the salt helps! After she left, I had to drive myself back to Dyson to get my neulasta shot. Barbara had called me to see if I could go out last night and at the moment I thought I could make it. I made what I thought was a 'quick' stop at the Walgreens but that was enough to wipe me out. Alex came home for the weekend but I wasn't much good with dinner for the night, so he and Bob finished off some leftovers and I layed down once again. I had a strange night sleep of feeling hot and cold all night.
So it's Saturday.... slow slow Saturday. Not alot gonna happen for me again today. I made some eggs for breakfast for all of us and had to rest. It's just the way it's gonna have to be... again looking forward to the upswing.
That's my update for now.
Thursday, we arrived a little early hoping to get started early. I had an appointment with my geneticist at 4pm and I wanted to be sure to make it. I made the decision to have the gene testing done to determine if I'm carrying it or not for 2 reasons - for me and Sarah (and Alex too). If I am carrying it, I'll have a double mastectomy immediately and get it over with. For Sarah, she now has the knowledge that she is likely to be carrying it too and it will help her to make her own decisions in the future.
But that didn't happen. I had my blood work done on Tuesday in anticipation of this day so we could start immediately, but the results were not at Dyson, so Kathy, my nurse, had to hunt them down. This delayed us almost an hour. When I saw Dr. Rubin during the off week, I complained that I had too much saline (2 bags instead of 1) and it made me very uncomfortable for several days afterward. He said many of the drugs do not need to be administered with the saline. I made sure I discussed this with Kathy ahead of time. She has a different methodology than the other nurses. She adminsitered 3/4 of saline bag first then followed it with the pre-meds, etc. This in itself slowed us down more. When 3:45pm hit, I had Bob go up to Kelli the Geneticist and reschedule. It wasn't until 5:30 that we left.
Sure some parts of my day were the same. Needles and drugs, Barbara and Bob. Shelly couldn't make it in this time - she had enough going on in her own life, that's for sure! But she was definitely there in spirit as she texted and im'd me throughout the day. What was different for me was the lack of sleep. Usually I go to sleep when I'm hit with the benedryl but not this time. I felt what would be described as restless leg syndrom, but I felt it all over my body. Although I was tired, I couldn't settle down to sleep and relax. I would be jolted up feeling jittery and uncomfortable. I had sent Bob out for a bit after Barbara had left. He was feeling anxious about the slowdown and it wasn't helping me. It was very crowded in the infusion room too. When we got there, there were no 'corner' chairs available, so there was a shortage of power for all our electronics. I had wanted to try to use Alex's Brain Scan pieces to try to help me sleep and did... but even that didn't help. I did manage a short nap when Bob came back, but not enough. I went home and settled in to rest and read for the night.
Friday wasn't much better. I managed a little work but then I had to lay down for a while. Shelly stopped by with fries with lots of salt - she knows that I can't taste anything for the next few days and the salt helps! After she left, I had to drive myself back to Dyson to get my neulasta shot. Barbara had called me to see if I could go out last night and at the moment I thought I could make it. I made what I thought was a 'quick' stop at the Walgreens but that was enough to wipe me out. Alex came home for the weekend but I wasn't much good with dinner for the night, so he and Bob finished off some leftovers and I layed down once again. I had a strange night sleep of feeling hot and cold all night.
So it's Saturday.... slow slow Saturday. Not alot gonna happen for me again today. I made some eggs for breakfast for all of us and had to rest. It's just the way it's gonna have to be... again looking forward to the upswing.
That's my update for now.
Thursday, February 3, 2011
MugA
I had an unexpected test today to check how my heart is withstanding the Adriamycin . Earlier in the week, I was describing the feeling in my chest for the week or so after the chemo treatment and Dr. Rubin just wanted to check that my heart wasn't being compromised.
Adriamycin is the dangerous drug that is administered from 2 vials into my IV on the day of chemotherapy. The general practice is a body can withstand 350 mg/m of the drug before it causes permanent heart damage. Based on my treatment plan, I will be below that at 300 mg/m by the time I go in for surgery and any damage that's happened is reversible over time.
Not used to feeling 'chest' pain or anything like that in my otherwise healthy body, it alerts me each time I feel it. And, in the week after the treatment, it happens quite often. Dr. Rubin listens to everything and encourages me to talk about anything unusual that is going on and this feels unusual for me.
I've actually had this test before I started the treatments also to test for my ability to withstand the Adriamycin back then. I was a different person then - just 2 months ago.
Usha is the technician who administers both the Nuclear and the MugA tests. For the MugA, you have to be connected to electrodes after being injected with a radioactive isotope. The first time, Usha thought there was something wrong with the machine because my heart rate was not registering. She complained that the machine had just been fixed and still it wasn't working. She did a good job of trying to troubleshoot it just as I would a computer for a customer. She would turn it off and on, try again, remove and replace the electrodes, swap out for a different set, unplug and replug them in, etc. I layed on the machine for nearly 30 minutes while she did all this. Finally she called her boss - a big burly but very nice man. I don't remember his name, but he did rush in and thank her for pulling him out from a meeting with the CEO!! I was beginning to feel a little guilty... truthfully I found it quite funny! Anyway, this man starts to run through all the tests again. After about 10 minutes, he asks me about my heart rate and blood pressure. I tell him both are unusually low - heart rate is around 58 bpm and my blood pressure runs around 90/60. He starts to unbutton his shirt and says to Usha "Hook me up". Three electrodes later and the machine is registering no problem! We all start laughing for a bit while he buttons up his shirt, gives Usha a few instructions and heads back to his meeting. With all that I finally register on the machine and with no surprise, my heart is in fine shape to start the treatments.
This time, Usha starts right away with the new procedure, but I suspect she doesn't need to. I can tell my body and my heart are different than they were just 2 months ago. As soon as the electrodes go on, I register and my heart rate is 74. Normal for most, but high for me. I'm a little disappointed. I'm able to take the test and hopefully find out the results tomorrow.
MugA test 2 is just not as good as story as the first time!
Adriamycin is the dangerous drug that is administered from 2 vials into my IV on the day of chemotherapy. The general practice is a body can withstand 350 mg/m of the drug before it causes permanent heart damage. Based on my treatment plan, I will be below that at 300 mg/m by the time I go in for surgery and any damage that's happened is reversible over time.
Not used to feeling 'chest' pain or anything like that in my otherwise healthy body, it alerts me each time I feel it. And, in the week after the treatment, it happens quite often. Dr. Rubin listens to everything and encourages me to talk about anything unusual that is going on and this feels unusual for me.
I've actually had this test before I started the treatments also to test for my ability to withstand the Adriamycin back then. I was a different person then - just 2 months ago.
Usha is the technician who administers both the Nuclear and the MugA tests. For the MugA, you have to be connected to electrodes after being injected with a radioactive isotope. The first time, Usha thought there was something wrong with the machine because my heart rate was not registering. She complained that the machine had just been fixed and still it wasn't working. She did a good job of trying to troubleshoot it just as I would a computer for a customer. She would turn it off and on, try again, remove and replace the electrodes, swap out for a different set, unplug and replug them in, etc. I layed on the machine for nearly 30 minutes while she did all this. Finally she called her boss - a big burly but very nice man. I don't remember his name, but he did rush in and thank her for pulling him out from a meeting with the CEO!! I was beginning to feel a little guilty... truthfully I found it quite funny! Anyway, this man starts to run through all the tests again. After about 10 minutes, he asks me about my heart rate and blood pressure. I tell him both are unusually low - heart rate is around 58 bpm and my blood pressure runs around 90/60. He starts to unbutton his shirt and says to Usha "Hook me up". Three electrodes later and the machine is registering no problem! We all start laughing for a bit while he buttons up his shirt, gives Usha a few instructions and heads back to his meeting. With all that I finally register on the machine and with no surprise, my heart is in fine shape to start the treatments.
This time, Usha starts right away with the new procedure, but I suspect she doesn't need to. I can tell my body and my heart are different than they were just 2 months ago. As soon as the electrodes go on, I register and my heart rate is 74. Normal for most, but high for me. I'm a little disappointed. I'm able to take the test and hopefully find out the results tomorrow.
MugA test 2 is just not as good as story as the first time!
Wednesday, February 2, 2011
"That's the funniest thing you've said yet!"
It's another snowy, icy day here. I'm home trying to work some and cook some. No need to shower first thing in the morning, so I waited until mid afternoon. I do still always wash my 'hair' - ok, my head. But this time I really felt more of the stubble than usual and got pretty excited! So much so, that I started to think about gelling it for more volume - maybe color it. Whatever it may be, it would be my hair and something to look forward too!
I rush down stairs to show my findings to Bob. I say, "Look! My hair is growing!" I bend down so he can see it and put his hand on my head to rub it so he can feel it. When I look up with a big smile, Bob doesn't know how to react or what to do... he starts laughing. "That's the funniest thing you've said yet!"
Admittedly, my hair is just a bit longer than hair I've ever had on my legs and very sparse. Try as he could to see what I saw, it just isn't there! I started laughing at my vision of me with a chic gelled hairdo. He was right - very funny!
Just a dream for awhile... back to the wig.
I rush down stairs to show my findings to Bob. I say, "Look! My hair is growing!" I bend down so he can see it and put his hand on my head to rub it so he can feel it. When I look up with a big smile, Bob doesn't know how to react or what to do... he starts laughing. "That's the funniest thing you've said yet!"
Admittedly, my hair is just a bit longer than hair I've ever had on my legs and very sparse. Try as he could to see what I saw, it just isn't there! I started laughing at my vision of me with a chic gelled hairdo. He was right - very funny!
Just a dream for awhile... back to the wig.
Saturday, January 22, 2011
Oh boy
Sarah made dinner last night and Alex pitched in! Barbecued Pork with homemade Porcini Gnocchi and Butter bean soup to start. And, as usual, the best compliment I can give is that I can taste it and it's delicious!!
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| Butter Bean Soup |
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| Porcini Gnocchi |
Me? I did alot of nothing but sleep. This time, my energy level is very low. I'm told the effects are cumulative and I should expect it. I hope it passes over the next few days.
We watched a good movie from my netflix shipment - The Illusionist - then I was off for a strange night of sleep. Followed by a morning full of more sleep.... I'm hoping that's it for the day.
Heading to Vassar Temple After Hours tonight, so the rest I'm doing today will help me stay longer tonight I hope. The kids are coming along. Another big night for Bob - he's playing again! I'll post pictures and video later. I'm excited for him!!!
---------------- Well after that last little paragraph, I had a huge wave of nausea come over me. Forced me back to lay on the sofa the rest of the day. I'm just hoping I make it to the event tonight at all. We'll see.
Friday, January 21, 2011
Rough and Tough
Rough night last night, tough day today...
Had a hard time getting back to sleep last night after my 'nap' of 4 hours. But even when I did get back to sleep, it wasn't a solid sleep. I was woken up quite a bit to go to the bathroom... I had gone through 2 bags of saline yesterday instead of the usual one so I was getting rid of a lot of that. I am feeling very bloated still today.
I did a little work today. Returned some emails, etc. It's the best I could do. Right now, I have a head ache and feeling some chest pain and the general tingling over my body. This is usually my cue to lay down... which I am going to do before the kids bring me back to Dyson for my Neulasta shot.
Did I mention the kids are home??? That's the good part...
Had a hard time getting back to sleep last night after my 'nap' of 4 hours. But even when I did get back to sleep, it wasn't a solid sleep. I was woken up quite a bit to go to the bathroom... I had gone through 2 bags of saline yesterday instead of the usual one so I was getting rid of a lot of that. I am feeling very bloated still today.
I did a little work today. Returned some emails, etc. It's the best I could do. Right now, I have a head ache and feeling some chest pain and the general tingling over my body. This is usually my cue to lay down... which I am going to do before the kids bring me back to Dyson for my Neulasta shot.
Did I mention the kids are home??? That's the good part...
Thursday, January 20, 2011
Chemo Day 3
Started the day with coffee and downloading my bookclub book to my kindle. Took the eMend and it's making me hungry and a little lightheaded.
Dyson Center -
Because of the snow on Tuesday, I didn't get my blood drawn ahead of time. I'm waiting on the results of my blood work to find out if my wbc's are good to go. I think they are!! I sent Bob to get me food.... starving. I want to eat before I fall asleep and can still taste it! Stephanie is my nurse today. She's also affiliated with Dr. Keleher, so I've met her before and she's very nice. A massage therapist, Maureen, has stopped by to see me and did a little work on my back and neck. Her service here is supplied by the Miles of Hope organization. It's so wonderful that there are people and services available to not only help you survive, but thrive!!!
Internet here is really a problem! They must have changed things since the last time I was here. The time out of the connection is very fast - you have to constantly relog in. Very very annoying when you lose your updates and you don't even know it.
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Just got home from the infusion center... 9:30-5. Long day. Slept a lot thru it all. My coloring was off for most of the day. Shelly described is as yellowish. I usually get pale at some point during but I rebound and my rosy cheeks reappear, but not this time. I also 'felt' the drugs alot more. Meaning, I could feel them circulate through my body - looping through my heart, around the lining of my stomach, up and down my legs and across my shoulders. Strange. Barbara stopped in on her way to a lunch meeting - my friends are fantabulous.
Shelly made a pan of lasagna for us for dinner... really nice thing to do. I'm pretty much out of it tonight, so it comes at a really good time. Big plus - one of my favorite foods!!
Yesterday and today I'm feeling the effects of the steroids... my knees and my muscles feel swollen. It should only last a few days. Speaking of last, I'll get my neulasta shot tomorrow.
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I went down for the count immediately after this post... I hit the sofa for 4 hours and now I'm resting upstairs. I'll be in bed soon. I think this was a combination of my once a week sleep day and the chemo effects all in one. Different than last 2 times. My stomach is feeling a little strange too - slightly queasy, a little pain. Throat feels scratchy, but that's been a single to lay down and rest.
Looks like different is a way of life these days!
Dyson Center -
Because of the snow on Tuesday, I didn't get my blood drawn ahead of time. I'm waiting on the results of my blood work to find out if my wbc's are good to go. I think they are!! I sent Bob to get me food.... starving. I want to eat before I fall asleep and can still taste it! Stephanie is my nurse today. She's also affiliated with Dr. Keleher, so I've met her before and she's very nice. A massage therapist, Maureen, has stopped by to see me and did a little work on my back and neck. Her service here is supplied by the Miles of Hope organization. It's so wonderful that there are people and services available to not only help you survive, but thrive!!!
Internet here is really a problem! They must have changed things since the last time I was here. The time out of the connection is very fast - you have to constantly relog in. Very very annoying when you lose your updates and you don't even know it.
-------------------------------------------------------------------------------------------------------------
Just got home from the infusion center... 9:30-5. Long day. Slept a lot thru it all. My coloring was off for most of the day. Shelly described is as yellowish. I usually get pale at some point during but I rebound and my rosy cheeks reappear, but not this time. I also 'felt' the drugs alot more. Meaning, I could feel them circulate through my body - looping through my heart, around the lining of my stomach, up and down my legs and across my shoulders. Strange. Barbara stopped in on her way to a lunch meeting - my friends are fantabulous.
Shelly made a pan of lasagna for us for dinner... really nice thing to do. I'm pretty much out of it tonight, so it comes at a really good time. Big plus - one of my favorite foods!!
Yesterday and today I'm feeling the effects of the steroids... my knees and my muscles feel swollen. It should only last a few days. Speaking of last, I'll get my neulasta shot tomorrow.
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I went down for the count immediately after this post... I hit the sofa for 4 hours and now I'm resting upstairs. I'll be in bed soon. I think this was a combination of my once a week sleep day and the chemo effects all in one. Different than last 2 times. My stomach is feeling a little strange too - slightly queasy, a little pain. Throat feels scratchy, but that's been a single to lay down and rest.
Looks like different is a way of life these days!
Sunday, January 9, 2011
Greasy Italian
As most of my friends know, this is how I refer to myself. I cannot go a full day without washing my hair... if I do, you can use the result to fry an egg. True but gross, I know.
Unconsciously, I headed to the shower again this morning for my usual ritual even though I showered late last night. Couldn't not wash my hair before going out... Got in the shower and started to wash my hair and realized - whoa! Not necessary!!! It's not the white peach fuzz on my head I should be washing, but the red wig I've been wearing all week!! It made me laugh how much things have changed in 2 months. The chemo has totally dried out my skin, so no threat of a greasy bald head!
Now - my red wig is drip drying on a rack in the kitchen sink - oh my!
Unconsciously, I headed to the shower again this morning for my usual ritual even though I showered late last night. Couldn't not wash my hair before going out... Got in the shower and started to wash my hair and realized - whoa! Not necessary!!! It's not the white peach fuzz on my head I should be washing, but the red wig I've been wearing all week!! It made me laugh how much things have changed in 2 months. The chemo has totally dried out my skin, so no threat of a greasy bald head!
Now - my red wig is drip drying on a rack in the kitchen sink - oh my!
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| My Sunday drive attire. My alter ego is drying... |
Thursday, December 30, 2010
Lather, Rinse, Repeat
Today was my 2nd Chemotherapy treatment at the Dyson Center. It was very much like the last one, except all my blood work was done a day before and my scheduled time was moved to the morning. They are closing early tomorrow for the Holiday and I have to get my neulasta shot in before then.
Sarah and Bob drove me in. I was mentally ready for it and the day started out pretty good. As I signed in, Sarah got a text from Meg that Steph was in the ER!!! We were just with them last night! Sarah went to see them while I got setup in the Infusion Room. I was hungry so, they gave me box breakfast - why not???
Anyway, Wanda checked my vitals and pulled in the infusion pump. The implanted port worked perfectly with no adjustments. Nice to not get stuck in the arm for a change. She started off with the usual mix - Saline, Pepcid, Benedryl, Decadron & Zofran. Fluids, stomach, reaction, nausea & nausea. With each bag, I felt more and more woozy and lightheaded. Finally, giving in and closing my eyes sooner than the first time. Done with the premeds and onto the biggie - Adriamycin. The 2 damn syringes that made my hair fall out!!! But, this time, with Wanda by my side pushing and returning, it seemed to go much quicker. Onto the Taxitere for an hour and another hour for the Cytoxin. I slept or drifted off thru most of it. I was done by 2pm.
During the time I was there, Barbara flew in for a few hours to join Bob & Sarah - followed by Alex and Melissa. Then, Meg & Sara came over from the ER. It was a big relief to hear my friend Steph's problem was not as severe as first reported and she was being sent home .... at points I was incoherent and non-responsive to them, to everyone!!! Not a very good host - but they all understood. Its nice to have such caring friends and family! I don't know how to express my gratitude for all they say and do.
Afterward, Bob, Sarah and I went down to Wappingers to see Mark. For some reason this time, I was starving!! Chowed down a pizza slice in 15 seconds... done. Within 10 minutes, I said to Bob 'let's go' - I was beginning to crash. So home we went and I immediately layed down for a couple of hours. I needed it. I awoke hungry again! More pizza and Sarah made her infamous crepes - I could even taste them a little! Sarah also made some chicken wings using the fryer Bob got... yum!
I think the best part of my day was going to the boutique at Dyson. I had sent Sarah upstairs to pick up some more of the eyebrow gel to try to save my brow and lashes. It's not a guarantee, but I'm gonna try. While she was up there, she saw a red wig and liked it. She took me up there and I tried it on and I have to say it is as close to my color as I'll ever get!!! It's the style I wore in 1984 - we have engagement pictures to prove it. Called Bob up and now had confirmation from him and all the rest. It was a go! It was much more comfortable for me too. I walked in as a blonde and left as a redhead!!
One complaint today and yesterday - my scalp hurts! Even though Bob shaved my head, all the hair left on my scalp is just small little pieces - stubble. Sarah and I are plucking them out - nice kid that will do that for her Mom!!! Ok, now she's using a lint roller!!! And it's working too!! How funny is that????
Finished my night hanging with my family, surfing, blogging and chatting with the girls... just as I do every night. Lather, rinse, repeat!
Sarah and Bob drove me in. I was mentally ready for it and the day started out pretty good. As I signed in, Sarah got a text from Meg that Steph was in the ER!!! We were just with them last night! Sarah went to see them while I got setup in the Infusion Room. I was hungry so, they gave me box breakfast - why not???
Anyway, Wanda checked my vitals and pulled in the infusion pump. The implanted port worked perfectly with no adjustments. Nice to not get stuck in the arm for a change. She started off with the usual mix - Saline, Pepcid, Benedryl, Decadron & Zofran. Fluids, stomach, reaction, nausea & nausea. With each bag, I felt more and more woozy and lightheaded. Finally, giving in and closing my eyes sooner than the first time. Done with the premeds and onto the biggie - Adriamycin. The 2 damn syringes that made my hair fall out!!! But, this time, with Wanda by my side pushing and returning, it seemed to go much quicker. Onto the Taxitere for an hour and another hour for the Cytoxin. I slept or drifted off thru most of it. I was done by 2pm.
During the time I was there, Barbara flew in for a few hours to join Bob & Sarah - followed by Alex and Melissa. Then, Meg & Sara came over from the ER. It was a big relief to hear my friend Steph's problem was not as severe as first reported and she was being sent home .... at points I was incoherent and non-responsive to them, to everyone!!! Not a very good host - but they all understood. Its nice to have such caring friends and family! I don't know how to express my gratitude for all they say and do.
Afterward, Bob, Sarah and I went down to Wappingers to see Mark. For some reason this time, I was starving!! Chowed down a pizza slice in 15 seconds... done. Within 10 minutes, I said to Bob 'let's go' - I was beginning to crash. So home we went and I immediately layed down for a couple of hours. I needed it. I awoke hungry again! More pizza and Sarah made her infamous crepes - I could even taste them a little! Sarah also made some chicken wings using the fryer Bob got... yum!
I think the best part of my day was going to the boutique at Dyson. I had sent Sarah upstairs to pick up some more of the eyebrow gel to try to save my brow and lashes. It's not a guarantee, but I'm gonna try. While she was up there, she saw a red wig and liked it. She took me up there and I tried it on and I have to say it is as close to my color as I'll ever get!!! It's the style I wore in 1984 - we have engagement pictures to prove it. Called Bob up and now had confirmation from him and all the rest. It was a go! It was much more comfortable for me too. I walked in as a blonde and left as a redhead!!
 |
| Redheaded Mary |
One complaint today and yesterday - my scalp hurts! Even though Bob shaved my head, all the hair left on my scalp is just small little pieces - stubble. Sarah and I are plucking them out - nice kid that will do that for her Mom!!! Ok, now she's using a lint roller!!! And it's working too!! How funny is that????
Finished my night hanging with my family, surfing, blogging and chatting with the girls... just as I do every night. Lather, rinse, repeat!
Saturday, December 18, 2010
Gotta do
Took a shower today kind of on the late side. While washing my hair, I realized my scalp is feeling almost numb. Wondering if that's a sign.
Feeling very tired this afternoon. My body is tingling, lightheaded and the inside of my mouth also feels numb. Gotta lay down.
Feeling very tired this afternoon. My body is tingling, lightheaded and the inside of my mouth also feels numb. Gotta lay down.
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