When people talk about having been through cancer they talk about the war they have been through. While I cannot relate to our troops I can relate to a war on my body and I have the battle scars to prove it. It is one week since the end of my radiation and my skin still continues to peel. Some in new spots, some in old spots. Under my armpit it has peeled down to what looks like the dermis layer -very gross- and was all weepy and not pretty smelling after the day.
I am back to having showers and find the water running down the front is soothing. I am also soaking the skin at night aka taking a bath and find that each day that my skin is not as painful as the day before. I can wear a bra for the day but have developed an appeal for the freedom of not wearing one. I think I might have been a nudist in a former life...although I am sure my neighbours appreciate my clothed self...not to mention my family and friends.
I think I am close to the end of the peeling stage and still slap a mixture of flamazine, hydro cortisone and lubriderm on various areas as my chest and armpit as they are all at various stages.
As I look at my hands, I wonder where my pretty nails have gone. Instead I am left with `tiger lines`` and what looks like I have slammed several of my fingers in a car door. It looks like my nails are going to peel off in layers as they grow out but at least it doesn`t look like they are going to fall off...my toes are another story.
I have been watching my toes, as a chemo side effect is loosing nails...as opposed to being THAT bored. I am sad to say that one of my big toes is not going to win. While the other one might not look so pretty it is nothing that some nail polish cannot disguise. I am just hoping the other one will hang on until after my pedicure and trip..else my sandal days may cause some unusual foot staring.
My ``root`` vein is still hanging around like an unwanted friend but it is not as apparent as it use to be and the blown out vein lines are fading each day. They now look the colour of a week old bruise.
In all of this it is sometimes hard to see the silver lining but there are some: my real hair is growing in...even in the bald patches. Mind you some of it looks like pubic hair but I guess beggars can`t be choosers. I now have one eyelash on its way in and if you look reallllly close you can see some eyebrows too. But the biggest news is that the hot flashes have started to decrease...whoot whoot! I have gone from having 15-20 a day -so basically soaked the whole day and feeling like I peed myself- to 6-10 a day and only slightly damp!
I went out last night and had a glass of wine with dinner, only had one hot flash during the concert and came home with energy to spare...watch out world...I`M COMING BACK!
Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts
Friday, April 6, 2012
Sunday, March 18, 2012
Hair Envy
In life I have not wanted for much. Nor have I been the kind of person to covet what others have...until now. I find myself sitting in the hospital waiting room and staring at other people's hair. Yup you guessed it <I am sure the title helped> I have "hair envy".
Each day I look closely at my eyelashes and eyebrows for any sight of growth. My head still has the fuzzies but no sign of "real" hair. Unfortunately, each day I have been disappointed. I haven't spent much time googling things throughout my journey but the other day I did google how long before my hair grows. The common consensus is that it starts growing 6 weeks after your last chemo and within two months you will have 1 inch of growth. Which means that I should have almost an inch of hair growth...and obviously I am going to be the exception to the rule.
I am sure my hair follicles are still dizzy with the chemo drugs that coursed through my veins as I still have "war wounds" visible from the chemo injections. So in the meantime, I decided it was time to switch things up and get a new wig. I have decided to call her Cindy. It may not be real hair but it is kind of fun to be able to switch up the styles so easily without having to wait during the growing out stage. Now if I could only find a way to encourage my real hair to grow...maybe it needs fertilizer...you would think that with all of the shit I have been through, it would be growing out of control.
Each day I look closely at my eyelashes and eyebrows for any sight of growth. My head still has the fuzzies but no sign of "real" hair. Unfortunately, each day I have been disappointed. I haven't spent much time googling things throughout my journey but the other day I did google how long before my hair grows. The common consensus is that it starts growing 6 weeks after your last chemo and within two months you will have 1 inch of growth. Which means that I should have almost an inch of hair growth...and obviously I am going to be the exception to the rule.
I am sure my hair follicles are still dizzy with the chemo drugs that coursed through my veins as I still have "war wounds" visible from the chemo injections. So in the meantime, I decided it was time to switch things up and get a new wig. I have decided to call her Cindy. It may not be real hair but it is kind of fun to be able to switch up the styles so easily without having to wait during the growing out stage. Now if I could only find a way to encourage my real hair to grow...maybe it needs fertilizer...you would think that with all of the shit I have been through, it would be growing out of control.
Sunday, January 22, 2012
Holy Hot Flash Batman
I have always know what hot flashes were. As early as I can remember I can picture my mother standing outside in her nightgown in the middle of winter. Thinking my mother was fortunate to have periods where she was warm was apparently a grave misunderstanding on my part.
I am one of "those people" who in the middle of summer will have a blanket over me just to take the chill off; while others around me are in shorts and a tank top. So when I was told that a possible side effect was hot flashes I thought "bring them on"...finally I will be warm. What I was not anticipating was the degree in which they occur.
When you go to a Thai restaurant they forewarn you that dishes are one chili hot (mild) up to four chilies hot (bum burner)...well hot flashes kind of work the same way. Sometimes I just get a mild wave..just to warm you and other times I feel like I need to strip off and dance naked in the snow. I wonder what the neighbours would say?
I also wish there was a way to gauge when they came on and to what "chili" level they would be. I have discovered dressing in layers is probably the way to go and I am glad it is winter as the 4 chili ones would be brutal in the summer.
Here is my hot flash guide:
One Chili- This is just a mild wave of heat. It causes a slight perspiration line on the top of your lip and only warms your face. These tend to come in waves of three or four and are just enough to annoy you as opposed to warm you.
Two Chilies- I tend to get these after eating spicy food or while all bundled up waiting for my husband to still put on his shoes. Not only does the perspiration line occur but you feel like to want to lift your wig up a bit just to let some of the steam out. This one often causes sweat along your brow and lip line..sometimes extending to the back of your neck. These can be cooled down quickly with a couple of quick pulls to your shirt acting as a body fan or a cool cloth to the back of your neck.
Three Chilies- When I first started getting these it was usually the day or so after chemo but "oh lucky me" <sarcasm> kept having them. These usually occur when I am cuddled up with the hot water bottle, cat and dog in bed. This requires a quick pull down of the covers, flipping the cat off the bed and sending the dog into a barking fit. My face gets flushed as though I have drank one too many bottles of wine and my back is sweating. After flinging the hot water bottle off the bed and flapping the sheets like I am trying to take off, some relief of cool air usually sets in and all goes back to normal.
Four Chilies- This one is red hot and I feel sorry for anyone with in a 50' radius of me. These are brutal and I normally experience these day 3 and 4 after chemo and always in the middle of the night when I am/was sound asleep. This is full out war! To conquer this battle..flip all sheets off the bed...sorry to my poor husband..turn the ceiling fan onto high.
As you know animals usually sense a natural disaster and are gone way before the sheets go flying. Once Arctic temperatures are sufficiently felt, you realize you are soaked completely through your pajamas and then you begin to freeze. You cannot get the fan off and sheets up fast enough. You think about changing the wet pajamas but begin to shiver and try to curl into your husband to steal any heat that maybe remaining on him. Only he moves away as your are ice cold and wet and not to mention ...trying to sleep. You find the semi-warm hot water bottle and sheepishly look at your husband only to have him grab the bottle, grumble and go refresh it. This one takes a good half hour until the rest of the night to recover as does all things surrounding. The cat comes back after an hour or so but treads lightly...the dog decides that his bed is a safer, and a less disturbing option and the husband, as wonderful as he is...is probably thinking about the spare room bed.
I am one of "those people" who in the middle of summer will have a blanket over me just to take the chill off; while others around me are in shorts and a tank top. So when I was told that a possible side effect was hot flashes I thought "bring them on"...finally I will be warm. What I was not anticipating was the degree in which they occur.
When you go to a Thai restaurant they forewarn you that dishes are one chili hot (mild) up to four chilies hot (bum burner)...well hot flashes kind of work the same way. Sometimes I just get a mild wave..just to warm you and other times I feel like I need to strip off and dance naked in the snow. I wonder what the neighbours would say?
I also wish there was a way to gauge when they came on and to what "chili" level they would be. I have discovered dressing in layers is probably the way to go and I am glad it is winter as the 4 chili ones would be brutal in the summer.
Here is my hot flash guide:
One Chili- This is just a mild wave of heat. It causes a slight perspiration line on the top of your lip and only warms your face. These tend to come in waves of three or four and are just enough to annoy you as opposed to warm you.
Two Chilies- I tend to get these after eating spicy food or while all bundled up waiting for my husband to still put on his shoes. Not only does the perspiration line occur but you feel like to want to lift your wig up a bit just to let some of the steam out. This one often causes sweat along your brow and lip line..sometimes extending to the back of your neck. These can be cooled down quickly with a couple of quick pulls to your shirt acting as a body fan or a cool cloth to the back of your neck.
Three Chilies- When I first started getting these it was usually the day or so after chemo but "oh lucky me" <sarcasm> kept having them. These usually occur when I am cuddled up with the hot water bottle, cat and dog in bed. This requires a quick pull down of the covers, flipping the cat off the bed and sending the dog into a barking fit. My face gets flushed as though I have drank one too many bottles of wine and my back is sweating. After flinging the hot water bottle off the bed and flapping the sheets like I am trying to take off, some relief of cool air usually sets in and all goes back to normal.
Four Chilies- This one is red hot and I feel sorry for anyone with in a 50' radius of me. These are brutal and I normally experience these day 3 and 4 after chemo and always in the middle of the night when I am/was sound asleep. This is full out war! To conquer this battle..flip all sheets off the bed...sorry to my poor husband..turn the ceiling fan onto high.
As you know animals usually sense a natural disaster and are gone way before the sheets go flying. Once Arctic temperatures are sufficiently felt, you realize you are soaked completely through your pajamas and then you begin to freeze. You cannot get the fan off and sheets up fast enough. You think about changing the wet pajamas but begin to shiver and try to curl into your husband to steal any heat that maybe remaining on him. Only he moves away as your are ice cold and wet and not to mention ...trying to sleep. You find the semi-warm hot water bottle and sheepishly look at your husband only to have him grab the bottle, grumble and go refresh it. This one takes a good half hour until the rest of the night to recover as does all things surrounding. The cat comes back after an hour or so but treads lightly...the dog decides that his bed is a safer, and a less disturbing option and the husband, as wonderful as he is...is probably thinking about the spare room bed.
Wednesday, January 4, 2012
The Thunder Rolls
My family has never shied away from any conversation, least of all the topic of poop. It never seems to fail that at every dinner someone brings up the topic of poop in some manner. Just once I wish this wasn't the case but I can't control it...which leads me to today's blog.
During this time I felt like my bowels were being controlled by someone else. I was beginning to think an army had taken over my internal workings and were directing the flow. There must have been a renegade General in there as he was pushing everything through..I could just imagine him yelling "Everybody out..move it move it"...'cause that is what was going on. Literally. I would eat and then that was it...to the bathroom I would run. As for the drug running through my system I am sure the General had the lower ranks scrubbing every part of me as half my face was numb. From below my right eye to the bottom of my chin had no feeling. I had sharp pains in my lower abdomen which I wish were from too many sit ups but sooooo not the case.
To add insult to injury I developed a red irritation on a 2" spot on my right hand and a couple of spots on my left which had small blisters on them. My right hand was swollen so I took a couple of ibuprofen to try to get the swelling down and watched as the skin dried out and began to peel...did I mention my face beginning to peel?
After a couple of days my taste buds started to return as I was getting pretty tired of grapes, smoothies, watermelon and tomatoes...but at least I could taste those. It felt like I had pieces of oatmeal in my mouth which I can only imagine were pieces of skin cells sloughing off...yeah me!
The bright side? If I must come up with something I guess I can look at the skin peeling as exfoliation and the fact that I could taste some things was better than not tasting anything. Plus I was able to get in for several massages and have already booked some for after the next chemo....but really....I would rather wallow in my own self pity, bitch about the "guess what happened today" and crawl under the covers and not come out until mid February when this chemo shit <see there I go talking about it> is over...come on February!
During this time I felt like my bowels were being controlled by someone else. I was beginning to think an army had taken over my internal workings and were directing the flow. There must have been a renegade General in there as he was pushing everything through..I could just imagine him yelling "Everybody out..move it move it"...'cause that is what was going on. Literally. I would eat and then that was it...to the bathroom I would run. As for the drug running through my system I am sure the General had the lower ranks scrubbing every part of me as half my face was numb. From below my right eye to the bottom of my chin had no feeling. I had sharp pains in my lower abdomen which I wish were from too many sit ups but sooooo not the case.
To add insult to injury I developed a red irritation on a 2" spot on my right hand and a couple of spots on my left which had small blisters on them. My right hand was swollen so I took a couple of ibuprofen to try to get the swelling down and watched as the skin dried out and began to peel...did I mention my face beginning to peel?
After a couple of days my taste buds started to return as I was getting pretty tired of grapes, smoothies, watermelon and tomatoes...but at least I could taste those. It felt like I had pieces of oatmeal in my mouth which I can only imagine were pieces of skin cells sloughing off...yeah me!
The bright side? If I must come up with something I guess I can look at the skin peeling as exfoliation and the fact that I could taste some things was better than not tasting anything. Plus I was able to get in for several massages and have already booked some for after the next chemo....but really....I would rather wallow in my own self pity, bitch about the "guess what happened today" and crawl under the covers and not come out until mid February when this chemo shit <see there I go talking about it> is over...come on February!
Wednesday, December 28, 2011
D is for DAMN!
Docetaxel is my latest drug in the cocktail elixir of round 4. It is the only drip for the next three rounds. I had been prepared for the many side effects of this one but thought I would hold off judgement as I had gone through the first ones without many side effects. Chemo takes place on a Wednesday and then within 24-36 hours after the fact I was to get an injection of Neulasta. It is meant to help increase your immune system but can also cause muscle and joint pain.
So in I go for chemo with my "tree root" vein which they are unable to use. They heat up my hand with a warm blanket and then go searching for another vein source. Nurse K thinks she has one, but doesn't get in...then tries again on the underside of my arm...ok THAT hurts...but does not succeed. She calls over Nurse W <as they only poke you 2x before getting someone else...they are kind like that>. Nurse W searches all over, heats me up again and then goes in...nope...sigh..but the 4th time is a charm and we're off. Sometimes this drug can cause an allergic reaction when then inject it so they sit with you for a bit to ensure everything is all good. And for once I am doing well..no coughing fits, no numbness in fingers and toes all good. I sit quietly observing all around me while my husband is up observing a gentlemen next to us get injected through a port. Sick husband!
After an hour they do the flush and off I go. Well that was nothing! The next morning I wake up a little tired but I am pleased that I am not hitting the 1/2 hour wall like the first three rounds. I am a bit tired but I can push through this one. Then comes the injection, you have the option of having VON come into do this but my husband is a trained professional so I gave him the benefit of the doubt and let him inject me. I have never used any type of illegal drug in my life and now I am being injected with a $2000 legal drug...kind of seems off..maybe I should have tried some cheaper stuff first..but I am a girl with expensive taste. The needle was like a skin scratch and I felt some fluid move but within a minute you would never have known it was done. <Injected into my side stomach...lots of fat layers to hide the pain> Unlike my arm, which now looked like a pin cushion full of bruises and injection sites. Good job hunny!
I did start taking the ibuprofen and got the prescription done up for the Tylenol 3s but wasn't sure I needed them as this chemo seemed to be going well. Then I woke up the next morning and felt like I was getting the flu. Every muscle in my body felt like it was seizing and it felt like my cough was coming back. Although it was hard to tell as the acid reflux came back with a vengeance during the night and felt like it had burned my throat. Maybe I was getting the flu...I took a shower and massaged my muscles and felt good..I then got out of the shower and all things seized again..oh..ooh..did I mention this was Christmas Eve.
I went out and did some errands which turned out to be faster than anticipated, given the day, and came home. I started feeling really tired and decided to lay down..the only problem with this was that everywhere ached, so after an hour of fighting with positions I got up, took a bath and wrapped some presents. I tried to have a drink but it burnt my throat even more and I just gave up. Damn it ...it was Christmas and I was going to suck it up. We went out a friends house but after an hour of trying to move around to get comfortable and drinking water I thought..maybe we should go home...I walked through the door and went to bed with a hot water bottle. Not that this did any good as I flip flopped the whole night trying to find one place that was comfortable, only to discover there were none to be found. Although my husband did roll over to me and said..I'm a little cold...do you think you could have a hot flash right about now...seriously? Do you want the Christmas tree shoved up your ass? Actually I was a little chilled too but did not wish for the hot flashes.
The next day between the pill popping, a couple of baths massaging the pain, the acid reflux continuation and the hot flashes I was thinking MERRY F%^KING CHRISTMAS! I did manage to move around the house as small step walking seem to help..avoid stairs though..they hurt...got dressed..occasionally found myself staring at walls ...I made it to Christmas dinner. I was lucky as I only had to show up...not that I was much fun...two large hot flashes and tunnel vision later, my taste bud seem to have gone out of whack as well...I was only too happy to get home to bed....I think I got about an hours sleep as I had constant hot flashes that lasted almost 3 hours.
At one point I thought I should take my temperature but decided that would not get an accurate reading..then I thought..should I go to emergency as this is cannot be normal...but did I ...no...I laid there soaking through my pajamas, occasionally getting up to walk around but got cold...and went back to bed. The next two days I laid as low as I could. I was ready to have a full mental breakdown but kept thinking..this has to change at some point right? It can't last for three weeks..can it? I was due to go to a family function but decided this was not my best decision and family understands.
Also on day 5-6 my taste buds flared up to 3x their normal size and everything I ate had no flavour and tasted like sawdust...oh did I mention the insane diarrhea..yup...keeps getting better and better. I am one attractive lady!
On day 6 I decided I should get a massage. Someone rubbing me with heat and oil for an hour was a good thing. I was lucky to get in on such short notice and I took it as a good sign. The moment I got on the table and the large heating pad was put on was the first moment of relief I felt in 6 days. I have not gone for a massage since before my surgery as I wasn't sure how to approach the situation, but being in constant pain for 6 days makes you get over any inhibitions or embarrassment you have. I just flat out told L that I was going to take off my wig, I am in chemo, I only have one breast and please help me. L was great and she wasn't phased at all. She got the extra big heating pad, extra pillows to help prop me up so I laid flat and we laughed and giggled for an hour about our crazy dog stories. <She wins those ones>, Afterwards I got up and for the first time in many days I walked without pain. Why had I waited so long? How long will this last? When is the next available appointment?
And the good news is that I have found McDonald's banana-strawberry fruit smoothies are a relief to my mouth. I don't care if they have sugar in them...being able to "eat" something with flavour overrides this. I will try to make another massage appointment with in the next two days as L is booked, need to buy smoothie supplies...oh and did I mention that a hemroid has decided to flare up and the sides of my mouth have cracked...fun times....I think I should buy a pharamcy as I seem to be there often enough!
So in I go for chemo with my "tree root" vein which they are unable to use. They heat up my hand with a warm blanket and then go searching for another vein source. Nurse K thinks she has one, but doesn't get in...then tries again on the underside of my arm...ok THAT hurts...but does not succeed. She calls over Nurse W <as they only poke you 2x before getting someone else...they are kind like that>. Nurse W searches all over, heats me up again and then goes in...nope...sigh..but the 4th time is a charm and we're off. Sometimes this drug can cause an allergic reaction when then inject it so they sit with you for a bit to ensure everything is all good. And for once I am doing well..no coughing fits, no numbness in fingers and toes all good. I sit quietly observing all around me while my husband is up observing a gentlemen next to us get injected through a port. Sick husband!
After an hour they do the flush and off I go. Well that was nothing! The next morning I wake up a little tired but I am pleased that I am not hitting the 1/2 hour wall like the first three rounds. I am a bit tired but I can push through this one. Then comes the injection, you have the option of having VON come into do this but my husband is a trained professional so I gave him the benefit of the doubt and let him inject me. I have never used any type of illegal drug in my life and now I am being injected with a $2000 legal drug...kind of seems off..maybe I should have tried some cheaper stuff first..but I am a girl with expensive taste. The needle was like a skin scratch and I felt some fluid move but within a minute you would never have known it was done. <Injected into my side stomach...lots of fat layers to hide the pain> Unlike my arm, which now looked like a pin cushion full of bruises and injection sites. Good job hunny!
I did start taking the ibuprofen and got the prescription done up for the Tylenol 3s but wasn't sure I needed them as this chemo seemed to be going well. Then I woke up the next morning and felt like I was getting the flu. Every muscle in my body felt like it was seizing and it felt like my cough was coming back. Although it was hard to tell as the acid reflux came back with a vengeance during the night and felt like it had burned my throat. Maybe I was getting the flu...I took a shower and massaged my muscles and felt good..I then got out of the shower and all things seized again..oh..ooh..did I mention this was Christmas Eve.
I went out and did some errands which turned out to be faster than anticipated, given the day, and came home. I started feeling really tired and decided to lay down..the only problem with this was that everywhere ached, so after an hour of fighting with positions I got up, took a bath and wrapped some presents. I tried to have a drink but it burnt my throat even more and I just gave up. Damn it ...it was Christmas and I was going to suck it up. We went out a friends house but after an hour of trying to move around to get comfortable and drinking water I thought..maybe we should go home...I walked through the door and went to bed with a hot water bottle. Not that this did any good as I flip flopped the whole night trying to find one place that was comfortable, only to discover there were none to be found. Although my husband did roll over to me and said..I'm a little cold...do you think you could have a hot flash right about now...seriously? Do you want the Christmas tree shoved up your ass? Actually I was a little chilled too but did not wish for the hot flashes.
The next day between the pill popping, a couple of baths massaging the pain, the acid reflux continuation and the hot flashes I was thinking MERRY F%^KING CHRISTMAS! I did manage to move around the house as small step walking seem to help..avoid stairs though..they hurt...got dressed..occasionally found myself staring at walls ...I made it to Christmas dinner. I was lucky as I only had to show up...not that I was much fun...two large hot flashes and tunnel vision later, my taste bud seem to have gone out of whack as well...I was only too happy to get home to bed....I think I got about an hours sleep as I had constant hot flashes that lasted almost 3 hours.
At one point I thought I should take my temperature but decided that would not get an accurate reading..then I thought..should I go to emergency as this is cannot be normal...but did I ...no...I laid there soaking through my pajamas, occasionally getting up to walk around but got cold...and went back to bed. The next two days I laid as low as I could. I was ready to have a full mental breakdown but kept thinking..this has to change at some point right? It can't last for three weeks..can it? I was due to go to a family function but decided this was not my best decision and family understands.
Also on day 5-6 my taste buds flared up to 3x their normal size and everything I ate had no flavour and tasted like sawdust...oh did I mention the insane diarrhea..yup...keeps getting better and better. I am one attractive lady!
On day 6 I decided I should get a massage. Someone rubbing me with heat and oil for an hour was a good thing. I was lucky to get in on such short notice and I took it as a good sign. The moment I got on the table and the large heating pad was put on was the first moment of relief I felt in 6 days. I have not gone for a massage since before my surgery as I wasn't sure how to approach the situation, but being in constant pain for 6 days makes you get over any inhibitions or embarrassment you have. I just flat out told L that I was going to take off my wig, I am in chemo, I only have one breast and please help me. L was great and she wasn't phased at all. She got the extra big heating pad, extra pillows to help prop me up so I laid flat and we laughed and giggled for an hour about our crazy dog stories. <She wins those ones>, Afterwards I got up and for the first time in many days I walked without pain. Why had I waited so long? How long will this last? When is the next available appointment?
And the good news is that I have found McDonald's banana-strawberry fruit smoothies are a relief to my mouth. I don't care if they have sugar in them...being able to "eat" something with flavour overrides this. I will try to make another massage appointment with in the next two days as L is booked, need to buy smoothie supplies...oh and did I mention that a hemroid has decided to flare up and the sides of my mouth have cracked...fun times....I think I should buy a pharamcy as I seem to be there often enough!
Saturday, December 24, 2011
Who's the boss of you
Ok so I was all cocky thinking these first rounds were no big deal. Then chemo stuck me in the ass and made me realize whose boss in all of this ...and it is not me. After my third round the vein they had been using for the three rounds decided to become irritated. It all of a sudden got hard and felt like a "tree root". I couldn't straighten my arm or carry any weight in it. I could feel the vein from the point of where the injected me all the way to my armpit and it HURT to touch it. I called the cancer centre and they said this is common and to apply heat on a regular basis, take Tylenol <checking temp first> for 48 to 72 hrs. Well this was a bit difficult to do as we were on the road visiting family, but I did get a hold of a hot water bottle and attempt this as often as possible.
And to top it off the Saturday before my last chemo I did not follow my own chemo rules by keeping up with my snacking every two hours and staying away from grocery stores on the busiest day. I got a bit run down and a cold found its way into my system. So here I am visiting family with a constant running nose, a cough that sounded like I had emphysema and should be taken to emergency. Fun times.
Normally a cold for me takes about 3-5 days to get over but 4 weeks later I still have the occasional cough and the running nose took almost 3 weeks to go away. As for the vein, I can still feel it but at least I can only feel it in my lower arm portion as opposed to from my wrist to my armpit. I still put the occasional hot water bottle on it..but it just goes to show that I am not the boss of me! Who knew? Apparently everyone but me..lol.
And to top it off the Saturday before my last chemo I did not follow my own chemo rules by keeping up with my snacking every two hours and staying away from grocery stores on the busiest day. I got a bit run down and a cold found its way into my system. So here I am visiting family with a constant running nose, a cough that sounded like I had emphysema and should be taken to emergency. Fun times.
Normally a cold for me takes about 3-5 days to get over but 4 weeks later I still have the occasional cough and the running nose took almost 3 weeks to go away. As for the vein, I can still feel it but at least I can only feel it in my lower arm portion as opposed to from my wrist to my armpit. I still put the occasional hot water bottle on it..but it just goes to show that I am not the boss of me! Who knew? Apparently everyone but me..lol.
Thursday, December 1, 2011
2 for 1
I have been a little neglectful in filling you in on the last two rounds of chemo. I have just had #3 of 6 so I am half way through the chemo portion. Can I get a whoot whoot! Luckily these three rounds have been pretty much the same...lots of pee breaks, constant eating to control the awful acid reflux, chemo fog aka large mental blocks, and limiting activity in the first week to 1/2 hour stints.
In the grand scheme of things and compared to others stories...I blew right through these. I have heard other people talk about not being able to handle the downward elevator...which sucks because chemo is on the 11th floor! Others are having dramatic mood swings, I just call that me! Some have talked about extreme fatigue and severe nausea...thankful I have not had either.....NOW....having said that, my first three rounds were the same drug. The next three rounds will be different. Only one injection of Docetaxil. They mix things up a bit but having me take a steroid the day before and after. Currently I am only taking them for three days after...and so far no weight gain from them but I do swell up a bit..wearing rings or should I say getting them off has become challenging at times.
I am still had the coughing fits during the injection of the epirubicin which is apparently the first in the history of this hospital. Oh well..there is my claim to fame...although this round I drank 1.5L of water during the 1/2 hour it took to inject it and it still wasn't enough and needed more water...crazy really. If you told me I had to drink that much water in a short amount of time I would have said you were nuts but as it turns out it was easy and I didn't even notice that it was gone until I coughed...and coughed...and coughed. Where is that Popsicle for injection 2 when you need it.
Mind you, there are a couple guidelines I do recommend as I was a bit of a bad girl and went out after the 3rd round of chemo instead of going home to rest. The nurses were not worried so why should I be...but if you decide to do this, I do advise:
1. Not wearing so many layers...hot flashes came in plenty of waves..this might have something to do with the tank top, shirt, sweater and down jacket I decided to wear in +14 weather
2. Do not walk up hills, this is hard to avoid where I live but by the time we hit the top of the hill, I thought my heart was going to come out of my chest. this went away shortly but did not help with the hot flashes
3. Do not drink caffeine...it will not help with the heat
4. Do not dance for 2 hrs in a venue full of 10k ppl...sit occasionally
5. BUT I wouldn't have done any differently as it was a great way to say bye bye chemo round number 3
In the grand scheme of things and compared to others stories...I blew right through these. I have heard other people talk about not being able to handle the downward elevator...which sucks because chemo is on the 11th floor! Others are having dramatic mood swings, I just call that me! Some have talked about extreme fatigue and severe nausea...thankful I have not had either.....NOW....having said that, my first three rounds were the same drug. The next three rounds will be different. Only one injection of Docetaxil. They mix things up a bit but having me take a steroid the day before and after. Currently I am only taking them for three days after...and so far no weight gain from them but I do swell up a bit..wearing rings or should I say getting them off has become challenging at times.
I am still had the coughing fits during the injection of the epirubicin which is apparently the first in the history of this hospital. Oh well..there is my claim to fame...although this round I drank 1.5L of water during the 1/2 hour it took to inject it and it still wasn't enough and needed more water...crazy really. If you told me I had to drink that much water in a short amount of time I would have said you were nuts but as it turns out it was easy and I didn't even notice that it was gone until I coughed...and coughed...and coughed. Where is that Popsicle for injection 2 when you need it.
Mind you, there are a couple guidelines I do recommend as I was a bit of a bad girl and went out after the 3rd round of chemo instead of going home to rest. The nurses were not worried so why should I be...but if you decide to do this, I do advise:
1. Not wearing so many layers...hot flashes came in plenty of waves..this might have something to do with the tank top, shirt, sweater and down jacket I decided to wear in +14 weather
2. Do not walk up hills, this is hard to avoid where I live but by the time we hit the top of the hill, I thought my heart was going to come out of my chest. this went away shortly but did not help with the hot flashes
3. Do not drink caffeine...it will not help with the heat
4. Do not dance for 2 hrs in a venue full of 10k ppl...sit occasionally
5. BUT I wouldn't have done any differently as it was a great way to say bye bye chemo round number 3
Thursday, November 17, 2011
Wigging Out
The loss of my hair has not only been emotionally painful but physically as well. I knew the day was inevitable but still shed many tears over what I would look like bald. Each day after chemo I pulled my fingers through my hair to see if today was the day. I was always overwhelmed with relief when I realized I was "safe" for another day.
I think <no expert here> that the hair loss portion of chemotherapy is more traumatic for women than men. Women make a ritual out of their hair and I am no exception. I love going to my hairdresser, curling up reading magazines by the fire in the winter with the best hot chocolate and a glass of wine in the summer. L and I would laugh and giggle for the whole two hours. When it came time for what both of us assumed would be my last appointment for awhile we were an emotional wreck. We even started with a glass of wine to get our emotions under control. I had decided to cut my hair short in anticipation of my future. My hair had not been long in a long time but I went from shoulder length to a pixie cut. I did love my new do but it was a constant reminder of what was to come.
After my first round of chemo I went to a wig consultant as I had heard it could take 7-10 days to get one in and you lose your hair approx 14 days after chemo so there was no time to waste. I called around and discovered there was a huge difference in what services were provided with the wig as well as the price. I choose a place that was more expensive but it offered a full consultation, the wig, stand, shampoo and conditioner and styling.
Now the real vs synthetic. I opted for synthetic only due to cost. I could not justify $1000-2000 for a real hair wig which I was hoping to have for only 6 months. There are different types of caps and this is where the wigs are separated, get what is most comfortable and you feel will not come off. I went for the "Cadillac" version of the cap. It is full mesh cap with rubber pads and tightens in the back. It fit my head and there was no chance that thing was coming off. Overall choosing a wig is pretty basic. Pick the cap, pick the length and pick the colour. Hence the reason choosing someone who can style it makes all the difference.
The chemo school did forewarn me that when hair loss was about to occur it would feel like a too tight pony tail. What they didn't tell me is that it would feel like 500 too tight pony tails. On day 10 after chemo my head was really sensitive to the point where it hurt to wash it. Laying my head on a pillow was by no means soothing and I was thinking at this point a geisha pillow would come in handy.
I think this is your body's way of coming to terms with hair loss. By day 12, I was thinking we were going to need new plumbing. My hair, even as short as it was, was coming out in droves. Everywhere I looked there was hair on the floor around me. I took the dog for a walk and there were streams of hair coming out from my head. So much so that I checked my head a lot during this time to ensure no bald spots were occurring.
I called D to find out where my wig was and made an appointment for day 14. I have always had fine hair but a ton of it. You have over 100,000 hairs on your head and I was losing about 10 at a time. If I ran my fingers through my hair it looked like I had cut a chunk out. I figured at this rate I would be bald by day 14.
On day 13 I did not run my fingers through my hair as I was in conserve my hair mode. I didn't go anywhere but I did wash it but admittedly did not brush it. I started to, but I was brushing out more hair than I think was on my head. I then decided I was ready for my hair to be gone. I had come to terms with it and knew that <unfortunately> thousands of other woman had been in this same place before me.
Now I might talk the talk, but getting in the car to go to my wig appointment was a whole other ballgame. It was like going to meet my maker and the 50 steps from the car to the front door took many long deep breaths. B had come with me and I had already decided he would be the first to see my head shaved. I couldn't see it happen. D was awesome and when I told her I couldn't watch she understood.
She spun me around and began cutting <she cuts your hair to 1/8" long as the wig and a newly bald head would be too sensitive together>. She even took the effort to move any cut hair away from falling on the cape. When she was done B looked at me and said...you have good shaped head. D massaged my head with a tingly product which felt great and soothing. It was the least painful my head had been in days. It was a relief.
She left the room and B said..it doesn't look bad. I turned my head slightly to the mirror and did a quick peek...was he crazy! Quick, turn my head back. Won't be doing that again for awhile. Bravery is not my forte.
Once the wig was on D spun me back..well that looked pretty good. She parted it, shaped and styled it. Wow this thing actually looks like hair!
That night I took off "Molly" and stared in the mirror. I was more than hair. I had gone through so much in a short period of time and come through it in what I term as easily. This was one more hurdle that I had crossed over. It was <in my mind> the high jump of hurdles. From now on I am on the healing side of this crazy cancer thing. Now quick put a hat on because my head is freezing!
I think <no expert here> that the hair loss portion of chemotherapy is more traumatic for women than men. Women make a ritual out of their hair and I am no exception. I love going to my hairdresser, curling up reading magazines by the fire in the winter with the best hot chocolate and a glass of wine in the summer. L and I would laugh and giggle for the whole two hours. When it came time for what both of us assumed would be my last appointment for awhile we were an emotional wreck. We even started with a glass of wine to get our emotions under control. I had decided to cut my hair short in anticipation of my future. My hair had not been long in a long time but I went from shoulder length to a pixie cut. I did love my new do but it was a constant reminder of what was to come.
After my first round of chemo I went to a wig consultant as I had heard it could take 7-10 days to get one in and you lose your hair approx 14 days after chemo so there was no time to waste. I called around and discovered there was a huge difference in what services were provided with the wig as well as the price. I choose a place that was more expensive but it offered a full consultation, the wig, stand, shampoo and conditioner and styling.
Now the real vs synthetic. I opted for synthetic only due to cost. I could not justify $1000-2000 for a real hair wig which I was hoping to have for only 6 months. There are different types of caps and this is where the wigs are separated, get what is most comfortable and you feel will not come off. I went for the "Cadillac" version of the cap. It is full mesh cap with rubber pads and tightens in the back. It fit my head and there was no chance that thing was coming off. Overall choosing a wig is pretty basic. Pick the cap, pick the length and pick the colour. Hence the reason choosing someone who can style it makes all the difference.
The chemo school did forewarn me that when hair loss was about to occur it would feel like a too tight pony tail. What they didn't tell me is that it would feel like 500 too tight pony tails. On day 10 after chemo my head was really sensitive to the point where it hurt to wash it. Laying my head on a pillow was by no means soothing and I was thinking at this point a geisha pillow would come in handy.
I think this is your body's way of coming to terms with hair loss. By day 12, I was thinking we were going to need new plumbing. My hair, even as short as it was, was coming out in droves. Everywhere I looked there was hair on the floor around me. I took the dog for a walk and there were streams of hair coming out from my head. So much so that I checked my head a lot during this time to ensure no bald spots were occurring.
I called D to find out where my wig was and made an appointment for day 14. I have always had fine hair but a ton of it. You have over 100,000 hairs on your head and I was losing about 10 at a time. If I ran my fingers through my hair it looked like I had cut a chunk out. I figured at this rate I would be bald by day 14.
On day 13 I did not run my fingers through my hair as I was in conserve my hair mode. I didn't go anywhere but I did wash it but admittedly did not brush it. I started to, but I was brushing out more hair than I think was on my head. I then decided I was ready for my hair to be gone. I had come to terms with it and knew that <unfortunately> thousands of other woman had been in this same place before me.
Now I might talk the talk, but getting in the car to go to my wig appointment was a whole other ballgame. It was like going to meet my maker and the 50 steps from the car to the front door took many long deep breaths. B had come with me and I had already decided he would be the first to see my head shaved. I couldn't see it happen. D was awesome and when I told her I couldn't watch she understood.
She spun me around and began cutting <she cuts your hair to 1/8" long as the wig and a newly bald head would be too sensitive together>. She even took the effort to move any cut hair away from falling on the cape. When she was done B looked at me and said...you have good shaped head. D massaged my head with a tingly product which felt great and soothing. It was the least painful my head had been in days. It was a relief.
She left the room and B said..it doesn't look bad. I turned my head slightly to the mirror and did a quick peek...was he crazy! Quick, turn my head back. Won't be doing that again for awhile. Bravery is not my forte.
Once the wig was on D spun me back..well that looked pretty good. She parted it, shaped and styled it. Wow this thing actually looks like hair!
That night I took off "Molly" and stared in the mirror. I was more than hair. I had gone through so much in a short period of time and come through it in what I term as easily. This was one more hurdle that I had crossed over. It was <in my mind> the high jump of hurdles. From now on I am on the healing side of this crazy cancer thing. Now quick put a hat on because my head is freezing!
Sunday, November 13, 2011
The days following
Believe me when I say the "chemo fog" they talk about is true. The week following my first round of chemo, I could not put full sentences together. It was as if all the neurons were misfiring and making any life changing decisions during this period is not recommended. I got half way through making dinner and forgot what I was making...not good when dealing with open flames.
Napping is also recommended. Don't get me wrong I am a girl who has always loved her naps but things are different now. I felt like Wile. E. Coyote when he hits the wall, slides down it and decides...this is a good place to nap. I was good in half hour stints. Then I would hit the wall and have to sit down...I was good to go in about 10 minutes and this is when you realize...I guess something is definitely going on and my body is trying to cope.
To top it off, acid reflux has found its way to my body. I have never had any heartburn or acid reflux in my life...yes this keeps getting better. I have found that I am able to keep this under control with a slight amount of food..literally a couple pieces of carrot or a piece of cheese and it goes away. Although a piece of cheese is not overly appealing at 2am so I have opted for animal crackers during this time. Gotta keep the kid in me going after all. Plus water is your best friend....keep drinking it...the constant bathroom breaks suck but at least it keeps away the dryness in your mouth.
Then there are the drugs. I only have to take them for a couple of days which is good because one of the steroids makes me looked sunburned and alcohol during this time is meant to be eliminated...and this is probably when you want it the most. After the first week was over, my body, mind and spirit started coming back. The fog lifted and my energy level came back and for the next two weeks it was like nothing was going on.
I didn't get any mouth sores, but did find myself in the first week biting the inside of my mouth..but I blame that on the fog. I also didn't get the aching joints or some of the other side effects so all in all one week out of three to be down isn't so bad..right...?
I did check my hair each day to see if it was falling out. On the 12th day after chemo I started noticing strands of hair coming out...but that is another story for another day.
Stay tuned.
Napping is also recommended. Don't get me wrong I am a girl who has always loved her naps but things are different now. I felt like Wile. E. Coyote when he hits the wall, slides down it and decides...this is a good place to nap. I was good in half hour stints. Then I would hit the wall and have to sit down...I was good to go in about 10 minutes and this is when you realize...I guess something is definitely going on and my body is trying to cope.
To top it off, acid reflux has found its way to my body. I have never had any heartburn or acid reflux in my life...yes this keeps getting better. I have found that I am able to keep this under control with a slight amount of food..literally a couple pieces of carrot or a piece of cheese and it goes away. Although a piece of cheese is not overly appealing at 2am so I have opted for animal crackers during this time. Gotta keep the kid in me going after all. Plus water is your best friend....keep drinking it...the constant bathroom breaks suck but at least it keeps away the dryness in your mouth.
Then there are the drugs. I only have to take them for a couple of days which is good because one of the steroids makes me looked sunburned and alcohol during this time is meant to be eliminated...and this is probably when you want it the most. After the first week was over, my body, mind and spirit started coming back. The fog lifted and my energy level came back and for the next two weeks it was like nothing was going on.
I didn't get any mouth sores, but did find myself in the first week biting the inside of my mouth..but I blame that on the fog. I also didn't get the aching joints or some of the other side effects so all in all one week out of three to be down isn't so bad..right...?
I did check my hair each day to see if it was falling out. On the 12th day after chemo I started noticing strands of hair coming out...but that is another story for another day.
Stay tuned.
Friday, November 4, 2011
The New Kid in Town
I wasn't sure what to expect on chemo injection day. I had tried not to read anything about this as I realize everyone reacts differently to it. As previously forewarned I had planned a fairly bland menu for the next couple of days...aka things that if I did throw up wouldn't be so bad the second time around. Plus I had a basic lunch...just in case.
My husband, knowing the hospital a little too well, took us up the back elevators. We arrived outside of the surgery room and I thought...ahhh...been there, done that. But then noticed a small 'this way" sign to chemotherapy. After wandering through a series of hallways, past a great city view <for those who are not scared of heights> we arrived at the registration desk and then hung out in the waiting room.
Today it was filled with people with hair- no baldies today...hmmm..we must all be new or they are on a different chemo path. The room was filled with a mixture of men and women and the long term room was full, making the fact that I live in a province where 47% of people will develop cancer more prevalent.
My name was called and we were led down a hallway to one of the short term rooms where there were three recliner chairs. Don't think we are looking at la-zy boys..but more like typical hospital version recliners...but comfortable. My chair was all ready for me with a heated blanket already on it. Nurse V went over what was going to happen and what the injections consisted of. She would administer the first two and the third would happen by drip. She also explained that she would be watching for any signs of allergic reaction and I was to tell her if I felt anything off.
Nurse V then looked at my veins and sighed. Yes my veins are disappointing as they shrivel from fear and do not often make an appearance, she was not to take it personally as they are not always cooperative. She got a hot towel and "hot" water to soak my hand in to try to make my veins less shy. Well the towel was more luke warm than hot and I think my saliva was warmer than the "hot" water. But being a good patient, I did as I was told and she was able to get me on the first poke. Mind you she did hang my arm down and she sat on the floor to do the injection...but she got it. She did recommend a port being put in and I agreed to this.
She injected the first medication (Fluorouracil) which is red in colour. So red going in means red coming out. Shortly after she began, I started feeling a little flemmy <nothing out of the ordinary for me> so I got out my bottle of water and began drinking it. Nurse V looked a little concern and asked how I was feeling...I'm good. I felt like my nose was getting stuffy so I drank more water, only this time I swallowed it wrong and began a coughing fit. B was quite calm as this is a normal occurrence for me but Nurse V was looking very concerned and said "I have never seen this reaction before". Then B explained ..nah this is normal for her...and I nodded in agreement as I was still to busy coughing. The injection continued and before I knew it Nurse V was onto the second injection.(Epirubicin)
Nurse K came in a checked everything as well before the injection began and it was explained that everything is double checked from the nurses end and it was also checked against my chart as well. Good to know that they are very careful before injecting poision into me. Nurse V then checked everything as well, and by this point my coughing was under control. I did feel a bit of a flutter up in the top of my arm which is normal, but again this went smoothly with no issues and so far I didn't feel any different. So onto injection three. (Cyclophosphamide)
This was done by drip, and again the checking of medication <and me> happened. There was one other gentlemen in the room and when I was almost finished the drip, so was he....it was a race to the end. I know competitive, even in chemo. It turned out we were done at the same time and the machines started beeping like we were lottery winners. Nurse V called for Nurse K and we were unhooked and free to go. I was originally told to expect between 2.5 hrs -3hrs given it was my first go, but we were done in just over 2 hrs.
I did have to pee before I left to ensure the drugs were working..in other words they wanted to ensure I was peeing red. I walked into the washroom and there was a hose next to the toilet....I was thinking "do they have to spray this place down often enough to need a hose?". But then I thought it was better not to think about this fact. I did my business and when I got up..no red...but it was the colour of beep juice. I guess that is close enough. It was not as "pretty" as the turquoise pee from before though.
That night I did eat a bland diet and took the one pill that was prescribed. I felt a little tired but other than that I was all good. I went to bed a little early and had no problems sleeping. So first round of chemo down...only 5 more to go.
My husband, knowing the hospital a little too well, took us up the back elevators. We arrived outside of the surgery room and I thought...ahhh...been there, done that. But then noticed a small 'this way" sign to chemotherapy. After wandering through a series of hallways, past a great city view <for those who are not scared of heights> we arrived at the registration desk and then hung out in the waiting room.
Today it was filled with people with hair- no baldies today...hmmm..we must all be new or they are on a different chemo path. The room was filled with a mixture of men and women and the long term room was full, making the fact that I live in a province where 47% of people will develop cancer more prevalent.
My name was called and we were led down a hallway to one of the short term rooms where there were three recliner chairs. Don't think we are looking at la-zy boys..but more like typical hospital version recliners...but comfortable. My chair was all ready for me with a heated blanket already on it. Nurse V went over what was going to happen and what the injections consisted of. She would administer the first two and the third would happen by drip. She also explained that she would be watching for any signs of allergic reaction and I was to tell her if I felt anything off.
Nurse V then looked at my veins and sighed. Yes my veins are disappointing as they shrivel from fear and do not often make an appearance, she was not to take it personally as they are not always cooperative. She got a hot towel and "hot" water to soak my hand in to try to make my veins less shy. Well the towel was more luke warm than hot and I think my saliva was warmer than the "hot" water. But being a good patient, I did as I was told and she was able to get me on the first poke. Mind you she did hang my arm down and she sat on the floor to do the injection...but she got it. She did recommend a port being put in and I agreed to this.
She injected the first medication (Fluorouracil) which is red in colour. So red going in means red coming out. Shortly after she began, I started feeling a little flemmy <nothing out of the ordinary for me> so I got out my bottle of water and began drinking it. Nurse V looked a little concern and asked how I was feeling...I'm good. I felt like my nose was getting stuffy so I drank more water, only this time I swallowed it wrong and began a coughing fit. B was quite calm as this is a normal occurrence for me but Nurse V was looking very concerned and said "I have never seen this reaction before". Then B explained ..nah this is normal for her...and I nodded in agreement as I was still to busy coughing. The injection continued and before I knew it Nurse V was onto the second injection.(Epirubicin)
Nurse K came in a checked everything as well before the injection began and it was explained that everything is double checked from the nurses end and it was also checked against my chart as well. Good to know that they are very careful before injecting poision into me. Nurse V then checked everything as well, and by this point my coughing was under control. I did feel a bit of a flutter up in the top of my arm which is normal, but again this went smoothly with no issues and so far I didn't feel any different. So onto injection three. (Cyclophosphamide)
This was done by drip, and again the checking of medication <and me> happened. There was one other gentlemen in the room and when I was almost finished the drip, so was he....it was a race to the end. I know competitive, even in chemo. It turned out we were done at the same time and the machines started beeping like we were lottery winners. Nurse V called for Nurse K and we were unhooked and free to go. I was originally told to expect between 2.5 hrs -3hrs given it was my first go, but we were done in just over 2 hrs.
I did have to pee before I left to ensure the drugs were working..in other words they wanted to ensure I was peeing red. I walked into the washroom and there was a hose next to the toilet....I was thinking "do they have to spray this place down often enough to need a hose?". But then I thought it was better not to think about this fact. I did my business and when I got up..no red...but it was the colour of beep juice. I guess that is close enough. It was not as "pretty" as the turquoise pee from before though.
That night I did eat a bland diet and took the one pill that was prescribed. I felt a little tired but other than that I was all good. I went to bed a little early and had no problems sleeping. So first round of chemo down...only 5 more to go.
Tuesday, November 1, 2011
Chemo School.101
Yup you heard it hear first. You need to go to chemo training before getting chemotherapy. You are probably wondering why would you need to do this? Trust me, no one fails. They are not going to say "oh no you didn't pay enough attention to the slide show so we cant inject you with several doses of poison". Can you imagine the drop out rate.
We had heard about the "chemo suite" before<sick sense of humor alert: or as B like to term it "sweet, chemo..".> on the top floor but could not imagine what it looked like. I pictured marble bathrooms, leather seating that reclined with massage functions built in. Flowers every where and freshly pressed linens...well not so much.
It was like any other floor, only it was dedicated to cancer patients. The waiting room is like all the others, no fancy chairs but at least on this floor you do not have to take a number. And the bathrooms...well they do not have marble ...B confirmed this..and I have yet to venture there as I already have a public washroom phobia.
They do have a lounge area on this floor called the "Sunshine Room". It is a bright yellow colour <go figure> where they have it decorated likegrandma's your living room. It also has wigs and scarves available for you and a couple times a week students come in to do massage, reiki, etc free of charge...so it kind of is the "sweet, chemo" room.
As we waited in our common chairs to be called to class I noticed several bald women in the waiting room and thought...where are the bald men. Plus I was surprised to see so many with their heads bare as opposed to covered in a hat, scarf or wig. This was a good sign of this being a comfortable environment.
My name was called and off we went down the hall passed all of the people getting chemo in what they term "short term rooms" . ie 3 hrs and under. Else you are in a big room behind the reception desk for longer periods. I am glad that it is the short term rooms for me. BTW that is where the bald men were:)
Chemo school lasted just under two hours and talked about precautions should you throw up...basically B is going to need a hazmat suit for the first 48hours. They talked about what to expect, myths ...and the nurse knew our individual situations so she was able to comment on whether or not we could anticipate different things. I was told I could get mouth sores, aching joints and when I lose my hair it will start feeling like a too tight ponytail...great something to look forward to.
Overall it was informative. It was a small group <three of us and our partners> so asking questions was easy and it was kept fairly light giving the topic at hand. I did not receive a certificate of graduation but instead given a date for my next two rounds of chemo and given the low down. Blood work followed by a doctor's appt the day before to ensure your blood levels are good. Then the next day will be chemo.
Ok chemo training done...next up poison injections...I know the fun never stops!
We had heard about the "chemo suite" before<sick sense of humor alert: or as B like to term it "sweet, chemo..".> on the top floor but could not imagine what it looked like. I pictured marble bathrooms, leather seating that reclined with massage functions built in. Flowers every where and freshly pressed linens...well not so much.
It was like any other floor, only it was dedicated to cancer patients. The waiting room is like all the others, no fancy chairs but at least on this floor you do not have to take a number. And the bathrooms...well they do not have marble ...B confirmed this..and I have yet to venture there as I already have a public washroom phobia.
They do have a lounge area on this floor called the "Sunshine Room". It is a bright yellow colour <go figure> where they have it decorated like
As we waited in our common chairs to be called to class I noticed several bald women in the waiting room and thought...where are the bald men. Plus I was surprised to see so many with their heads bare as opposed to covered in a hat, scarf or wig. This was a good sign of this being a comfortable environment.
My name was called and off we went down the hall passed all of the people getting chemo in what they term "short term rooms" . ie 3 hrs and under. Else you are in a big room behind the reception desk for longer periods. I am glad that it is the short term rooms for me. BTW that is where the bald men were:)
Chemo school lasted just under two hours and talked about precautions should you throw up...basically B is going to need a hazmat suit for the first 48hours. They talked about what to expect, myths ...and the nurse knew our individual situations so she was able to comment on whether or not we could anticipate different things. I was told I could get mouth sores, aching joints and when I lose my hair it will start feeling like a too tight ponytail...great something to look forward to.
Overall it was informative. It was a small group <three of us and our partners> so asking questions was easy and it was kept fairly light giving the topic at hand. I did not receive a certificate of graduation but instead given a date for my next two rounds of chemo and given the low down. Blood work followed by a doctor's appt the day before to ensure your blood levels are good. Then the next day will be chemo.
Ok chemo training done...next up poison injections...I know the fun never stops!
Friday, October 7, 2011
The Path Ahead
So the next big day in our adventure was hearing what the pathology report had to say. I was actually looking forward to what the report might NOT say. I know I am backwards but trust me.. this side of the fence is just as crowded.
Today the waiting room was not a ghost town, but I was put in a room quickly and did the change into the Johnny shirt <ties facing forward>. A new Dr came in....and explained that sometimes he and Dr. T help each other out and that way they get to learn each others areas as well. I guess he dealt more with the bottom half of woman than the top half.
He did an examination on me to see how I was healing and then flipped open the report. I felt like I was in a drama show and had to keep waiting past the commercial break to see the next segment. He reviewed the results:
Tumor size: 7.5 cm ...holy shit!
Margin around tumor: they want 5 mm as a clear zone and I had 8...ok lets keep the good news going
Lymph nodes: in 1 of 9 ...yeahhh only thing better would have been 0
Grade: 3 ..well kind of expected that one considering the size
CAT scan: all clear..meaning nothing else anywhere in my body
Wall Motion study: strong heart
That was the basic story of it. There were other parts such as my tumor was negative for estrogen cells which means drugs like Tamoxofin won't work, but really the news was great. It meant that from a cellular level technically I was cancer free.BUT he explained this did not get me out of chemo...damn!
He went out of the room and discussed my report with Dr T and in comes Dr T who did a quick check and was thoroughly disappointed that he had to take all the lymph nodes when only one was positive... I was ok with this scenario. If they had a chance of being infected...take them, I don't want them. Then he basically signed my release form and said...see you in a year! Wow....but then again this is not a department you want to be a repeat visitor in.
I did ask if he had any idea what my chemo rounds would be. He didn't want to guess at all as he said...because of the size of your tumor you will have chemo probably followed by radiation but as for anything else...I have not idea. Well that makes two of us.
At this moment the reality of my original appointment hits me. If I hadn't pushed for an earlier mammogram I cannot image the size my tumor would have been. Dr T was bang on when he said "if you had waited until October there would be nothing I could do for you". He was right as the tumor has grown .5 cm just in the week and a half from the core biopsy to my surgery. Again I say BE YOUR OWN ADVOCATE. My story could be very different had I not been. I shudder at this thought.
As we wave good buy to Dr T and Dr. ? ..enter Nurse L. Who asks how I am feeling...this becomes a very common question asked by everyone..and has nothing to do with my physical health but rather my emotional stability.
I was great. As far as things that could have been in that report I had come out well. She did admit that she was very surprised I didn't have to come back in after I got the drains out. She took them out only because of my persistence but she did say to the other nurse "I really expect her to be back for drainage". Oh no...you see, once you let me get out the door....I am not so good at coming back....until you make me....I guess that means I would be a bad psych patient.
Today the waiting room was not a ghost town, but I was put in a room quickly and did the change into the Johnny shirt <ties facing forward>. A new Dr came in....and explained that sometimes he and Dr. T help each other out and that way they get to learn each others areas as well. I guess he dealt more with the bottom half of woman than the top half.
He did an examination on me to see how I was healing and then flipped open the report. I felt like I was in a drama show and had to keep waiting past the commercial break to see the next segment. He reviewed the results:
Tumor size: 7.5 cm ...holy shit!
Margin around tumor: they want 5 mm as a clear zone and I had 8...ok lets keep the good news going
Lymph nodes: in 1 of 9 ...yeahhh only thing better would have been 0
Grade: 3 ..well kind of expected that one considering the size
CAT scan: all clear..meaning nothing else anywhere in my body
Wall Motion study: strong heart
That was the basic story of it. There were other parts such as my tumor was negative for estrogen cells which means drugs like Tamoxofin won't work, but really the news was great. It meant that from a cellular level technically I was cancer free.BUT he explained this did not get me out of chemo...damn!
He went out of the room and discussed my report with Dr T and in comes Dr T who did a quick check and was thoroughly disappointed that he had to take all the lymph nodes when only one was positive... I was ok with this scenario. If they had a chance of being infected...take them, I don't want them. Then he basically signed my release form and said...see you in a year! Wow....but then again this is not a department you want to be a repeat visitor in.
I did ask if he had any idea what my chemo rounds would be. He didn't want to guess at all as he said...because of the size of your tumor you will have chemo probably followed by radiation but as for anything else...I have not idea. Well that makes two of us.
At this moment the reality of my original appointment hits me. If I hadn't pushed for an earlier mammogram I cannot image the size my tumor would have been. Dr T was bang on when he said "if you had waited until October there would be nothing I could do for you". He was right as the tumor has grown .5 cm just in the week and a half from the core biopsy to my surgery. Again I say BE YOUR OWN ADVOCATE. My story could be very different had I not been. I shudder at this thought.
As we wave good buy to Dr T and Dr. ? ..enter Nurse L. Who asks how I am feeling...this becomes a very common question asked by everyone..and has nothing to do with my physical health but rather my emotional stability.
I was great. As far as things that could have been in that report I had come out well. She did admit that she was very surprised I didn't have to come back in after I got the drains out. She took them out only because of my persistence but she did say to the other nurse "I really expect her to be back for drainage". Oh no...you see, once you let me get out the door....I am not so good at coming back....until you make me....I guess that means I would be a bad psych patient.
Monday, August 22, 2011
The doctor awaits
I have been "lucky" in the sense that my appointments have been quickly followed by another appointment. Thus, not allowing me much time to think. My appointment with the surgeon was scheduled for the week after my diagnoses. Of course I spent some time researching him and discovered that he specializes in breast cancer...so in my mind a good guy to have.
Unlike other parts of the hospital, where it is hurry up and wait, we arrive to a newly organized section. At least I hope it is newly organized as they were still debating about how to work the numbering system....not giving me a lot of confidence here ladies. Once their debate was over, a new file was created for me, where they continued to put more and more papers into...I don't think my record was this big from birth onward. They know it's just one boob right...how big is your file if it is two.
My husband was not missing this appointment due to the results of the last one. Plus I needed someone to help remember/understand some of the possible information I was about to be given. We were directed into a room that was a fair size. I disrobed and put on the johnny shirt.
Side note: The Johnny shirt is a cruel piece of material. Different departments want you to put it on different ways. This so called shirt doesn't look good either way...one size does not fit all. Plus shirts don't go to mid-calf. If you put it on with the top tie facing forward it wants to choke you. If the tie goes in the back you have to be a contortionist to tie the bottom tie. I think "Johnny" was in an insane asylum...just saying I need to design something better.
Knock knock. <don't you always want to say ...come back in 5 minutes> A woman peeks her head around the corner and sees my husband. A shock look goes over he face <did I get the wrong room> then her gaze falls on me and she enters. She explains how the process will work.
- She is a resident <as in student>
-She will ask a series of questions
-She will do an examination
-She will report her findings to the doctor outside
-The doctor will come in, do an exam himself
-He will have a discussion with us about our next steps
Seems straight forward....
Step 1:Question Period
Dr J: So you know you have Invasive ductal carcinoma
Me: I do now <this is good in the scheme of things as from my neurotic googling I know this is the most common type>. You have to realize my doctor technically never told me I had cancer.
Dr. J <puzzled look>
Dr J: Do you have a family history of BC
Me: Not that I am aware of. My mother was adopted.
Dr: J: Do you smoke
Me: No
Dr J: How much do you drink
Me: Maybe 1 glass a week
Dr J: Have you noticed an increase in tiredness
Me: No
Dr J: Have you lost any weight
Me:sigh ...No
Dr J: Have you had a decrease in appetite
B:<belly laughter> NO!
<evil sideways glance from wife>
Step 2: Examination
I hop up on the table. I get groped on my right side then my left
Dr. J: Wow that tumor is quite large and you can feel the definition of the two
Now I probably should have responded with "why thank you" but thought this may be inappropriate.
A little more touch touch, poke poke and we were done. Then she left the room. <this sounds like some of my past relationships>
Step 3: dun dun dun..the Doctor enters
Again he does the touch touch, poke poke. Only he does a little extra and circles my breast around saying, "I don't think it has attached to the chest wall" <ok this is good> but it has attached to the skin. He then turns to Dr. J ..Do you know how I know it has attached. She has a blank look, I await with curiosity...how Dr. T..how? You can see the puckering when you press it inward.....oh yeah you can.
Dr. T: Ok that's it you can get up....wait...<how come I have all of this touching and no one has yet bought me dinner. >
I get up..contort myself with the shirt and sit back down. Dr. T turns to me and looks me straight in the eye.
"You have to have a mastectomy. The tumor is too large to have a lumpectomy. You will have chemo. It will be Tuesday and I will confirm the time"
GULP ..Today is Thursday. That is only 4 days away. He went on to explain some details but my mind had glazed over...all I heard was you are young <wait did he call me young> and therefore the cancers tend to be aggressive. You probably have noticed it growing rapidly....yes. Any questions? <Questions? No my mind is drawing a blank....might have something to do with the "system overload" sign blinking in front of me"
As he was writing a bunch of stuff on my chart he is questioning Dr J on some items. If I need to take out the sentinel nodes, which nerve can I cut?Pause..answer: incorrect. Questions 2: What nerve do I want to stay away from: Pause..answer: incorrect. <jokingly..but not really> I look him in the eye...You're doing the surgery ..right? Yes..Pause...answer. CORRECT!
They leave the room, I get dressed and try to take in the information but it is too much. Then Nurse L walks in..sees my face and proceeds with caution. Ok so your surgery is at 7:30am Tuesday morning...you have to be here for 6:30am.
WAIT>>>Dr. T just walked out the door how did it get scheduled so quickly? She hands me a folder and a series of books and ask if my family Dr gave me "THE" book.<Intelligent Patient Guide on Breast Cancer> Nope. I am thinking at this point I should switch doctors. Armed with an array of "light" reading she begins to explain each of the items she has given me along with what the drain I will need to take care of looks like. I am once again overwhelmed by the information I have been given and need to digest it. Did I hear the word drain?
She writes down my next appointment which is the next day for training??? Then directs us to the bowels of the hospital for blood work. My knees wobble. It will be less than a month from the time of my very first mammogram to having surgery. I am pretty sure this is the fast track!
I had planned to go back to work after this but after getting into my car I realized..."who am I kidding, I am not even sure I know how to get out of the parking lot at his moment" Breathe In. Breathe Out. You can do this!
Unlike other parts of the hospital, where it is hurry up and wait, we arrive to a newly organized section. At least I hope it is newly organized as they were still debating about how to work the numbering system....not giving me a lot of confidence here ladies. Once their debate was over, a new file was created for me, where they continued to put more and more papers into...I don't think my record was this big from birth onward. They know it's just one boob right...how big is your file if it is two.
My husband was not missing this appointment due to the results of the last one. Plus I needed someone to help remember/understand some of the possible information I was about to be given. We were directed into a room that was a fair size. I disrobed and put on the johnny shirt.
Side note: The Johnny shirt is a cruel piece of material. Different departments want you to put it on different ways. This so called shirt doesn't look good either way...one size does not fit all. Plus shirts don't go to mid-calf. If you put it on with the top tie facing forward it wants to choke you. If the tie goes in the back you have to be a contortionist to tie the bottom tie. I think "Johnny" was in an insane asylum...just saying I need to design something better.
Knock knock. <don't you always want to say ...come back in 5 minutes> A woman peeks her head around the corner and sees my husband. A shock look goes over he face <did I get the wrong room> then her gaze falls on me and she enters. She explains how the process will work.
- She is a resident <as in student>
-She will ask a series of questions
-She will do an examination
-She will report her findings to the doctor outside
-The doctor will come in, do an exam himself
-He will have a discussion with us about our next steps
Seems straight forward....
Step 1:Question Period
Dr J: So you know you have Invasive ductal carcinoma
Me: I do now <this is good in the scheme of things as from my neurotic googling I know this is the most common type>. You have to realize my doctor technically never told me I had cancer.
Dr. J <puzzled look>
Dr J: Do you have a family history of BC
Me: Not that I am aware of. My mother was adopted.
Dr: J: Do you smoke
Me: No
Dr J: How much do you drink
Me: Maybe 1 glass a week
Dr J: Have you noticed an increase in tiredness
Me: No
Dr J: Have you lost any weight
Me:sigh ...No
Dr J: Have you had a decrease in appetite
B:<belly laughter> NO!
<evil sideways glance from wife>
Step 2: Examination
I hop up on the table. I get groped on my right side then my left
Dr. J: Wow that tumor is quite large and you can feel the definition of the two
Now I probably should have responded with "why thank you" but thought this may be inappropriate.
A little more touch touch, poke poke and we were done. Then she left the room. <this sounds like some of my past relationships>
Step 3: dun dun dun..the Doctor enters
Again he does the touch touch, poke poke. Only he does a little extra and circles my breast around saying, "I don't think it has attached to the chest wall" <ok this is good> but it has attached to the skin. He then turns to Dr. J ..Do you know how I know it has attached. She has a blank look, I await with curiosity...how Dr. T..how? You can see the puckering when you press it inward.....oh yeah you can.
Dr. T: Ok that's it you can get up....wait...<how come I have all of this touching and no one has yet bought me dinner. >
I get up..contort myself with the shirt and sit back down. Dr. T turns to me and looks me straight in the eye.
"You have to have a mastectomy. The tumor is too large to have a lumpectomy. You will have chemo. It will be Tuesday and I will confirm the time"
GULP ..Today is Thursday. That is only 4 days away. He went on to explain some details but my mind had glazed over...all I heard was you are young <wait did he call me young> and therefore the cancers tend to be aggressive. You probably have noticed it growing rapidly....yes. Any questions? <Questions? No my mind is drawing a blank....might have something to do with the "system overload" sign blinking in front of me"
As he was writing a bunch of stuff on my chart he is questioning Dr J on some items. If I need to take out the sentinel nodes, which nerve can I cut?Pause..answer: incorrect. Questions 2: What nerve do I want to stay away from: Pause..answer: incorrect. <jokingly..but not really> I look him in the eye...You're doing the surgery ..right? Yes..Pause...answer. CORRECT!
They leave the room, I get dressed and try to take in the information but it is too much. Then Nurse L walks in..sees my face and proceeds with caution. Ok so your surgery is at 7:30am Tuesday morning...you have to be here for 6:30am.
WAIT>>>Dr. T just walked out the door how did it get scheduled so quickly? She hands me a folder and a series of books and ask if my family Dr gave me "THE" book.<Intelligent Patient Guide on Breast Cancer> Nope. I am thinking at this point I should switch doctors. Armed with an array of "light" reading she begins to explain each of the items she has given me along with what the drain I will need to take care of looks like. I am once again overwhelmed by the information I have been given and need to digest it. Did I hear the word drain?
She writes down my next appointment which is the next day for training??? Then directs us to the bowels of the hospital for blood work. My knees wobble. It will be less than a month from the time of my very first mammogram to having surgery. I am pretty sure this is the fast track!
I had planned to go back to work after this but after getting into my car I realized..."who am I kidding, I am not even sure I know how to get out of the parking lot at his moment" Breathe In. Breathe Out. You can do this!
Subscribe to:
Comments (Atom)