Showing posts with label Caregivers. Show all posts
Showing posts with label Caregivers. Show all posts
Friday, March 19, 2010
Day 147 3/7/10 Sunday
I’m losing my marbles. Tonight I left a candle burning in the bathroom and the thing dissolved and melted all over the toilet cover, bathroom floor and my bath rug. The bf was sweet enough to clean up the mess while I stood there and stared in disbelief, but not until he took a picture of it.
Day 146 3/6/10 Saturday
I’ve officially lost enough brain cells to be dangerous. Last night, I turned on the oven to bake some sweet potato fries, found the sweet potatoes to be moldy and threw them out, then promptly forgot about the oven until half an hour later when the bf asked why the oven was on. I have never ever EVER done that before.
Day 145 3/5/10 Friday
Slowly getting better again. Coffee milkshake time!
Today in counseling, A mentioned that chemo induces depression in a lot of people. Oooooohhhhh… well that totally explains the extra amount of bursting into tears at the drop of a hat. I think that also provided much needed explanation and an extra dose of patience to the bf over my extreme mood swings, aside from the obvious reasons of feeling crappy 75% of the time.
Oooh on Grey’s Anatomy last night, one of the patients survived leukemia AND lymphoma, only to have pulmonary fibrosis (scarring of the lung tissue) as a side effect from the radiation. Of course, he ended up surviving this crazy lung transplant thing.
The bf turned to me and asked, “could that happen to you?” And I replied “Well, I’m having my heart and lungs tested next week for damage from chemo! But I’m sure everything is fine.” Hmmm, he wasn’t reassured by that. I am simply refusing to believe that there will be much if any damage!
Today in counseling, A mentioned that chemo induces depression in a lot of people. Oooooohhhhh… well that totally explains the extra amount of bursting into tears at the drop of a hat. I think that also provided much needed explanation and an extra dose of patience to the bf over my extreme mood swings, aside from the obvious reasons of feeling crappy 75% of the time.
Oooh on Grey’s Anatomy last night, one of the patients survived leukemia AND lymphoma, only to have pulmonary fibrosis (scarring of the lung tissue) as a side effect from the radiation. Of course, he ended up surviving this crazy lung transplant thing.
The bf turned to me and asked, “could that happen to you?” And I replied “Well, I’m having my heart and lungs tested next week for damage from chemo! But I’m sure everything is fine.” Hmmm, he wasn’t reassured by that. I am simply refusing to believe that there will be much if any damage!
Tuesday, March 9, 2010
Day 143 3/3/10 Wednesday
Yesterday and today, I’ve felt like I have half a brain. I feel like I’m moving slowly as if underwater. Most of the time, my appetite and nausea have been ok, but the nausea will suddenly slap me in the face out of the blue. Usually because I forgot to take my anti-nausea medicine in a timely manner.
Since I haven’t left the house since Monday, I’ve neglected to brush my hair. Why bother? It just falls out anyway. Until I looked in the mirror and realized I looked like a crazy person, like the Professor in Back to the Future but with much less hair. I turned to the bf and asked, “why have you let me walk around like a crazy person all morning?!” And he just smiled humorously and said “you do kinda look like a frazzled housewife who just had a baby.” Hooray. Just the look I was going for.
Since I haven’t left the house since Monday, I’ve neglected to brush my hair. Why bother? It just falls out anyway. Until I looked in the mirror and realized I looked like a crazy person, like the Professor in Back to the Future but with much less hair. I turned to the bf and asked, “why have you let me walk around like a crazy person all morning?!” And he just smiled humorously and said “you do kinda look like a frazzled housewife who just had a baby.” Hooray. Just the look I was going for.
Friday, March 5, 2010
Day 136 2/24/10 Wednesday
Freaking out about health insurance today. I am thinking COBRA only lasts 15 months, which is rapidly approaching. Which means with our “pre-existing conditions”, the bf and I will both be denied health insurance on our own, unless one of us scrambles to find a staff job with benefits and marries the other!!!
Of course, when I mentioned this to the bf in my panicked hysteria, he just happily replied, “So, you wanna get married?” ARGHHHHHHH! That is so not the way I envisioned it. Do over!!! It totally doesn't count.
Of course, when I mentioned this to the bf in my panicked hysteria, he just happily replied, “So, you wanna get married?” ARGHHHHHHH! That is so not the way I envisioned it. Do over!!! It totally doesn't count.
Friday, February 26, 2010
Day 133 2/21/10 Sunday
Like I mentioned before, the days have passed by somewhat monotonously and though I’m no longer sick as I was Thursday, fatigue and a lovely hot flash hit me this morning. All of a sudden I have little energy except to sit around. I want to move around! I want to go out! I would not do well in prison.
It’s strange to have the bf working from home. On one hand, I need to respect his work time boundaries and pretend he’s not here, as if he were working on site. But on the other hand, he’s welcomed me to sit in the office with him and has insisted if I need anything to interrupt him. I assume that only means food service and health related issues. Haha…
It’s strange to have the bf working from home. On one hand, I need to respect his work time boundaries and pretend he’s not here, as if he were working on site. But on the other hand, he’s welcomed me to sit in the office with him and has insisted if I need anything to interrupt him. I assume that only means food service and health related issues. Haha…
Day 132 2/20/10 Saturday
After being homebound the last couple of days, the bf took me out for a drive as promised. We headed toward Palos Verdes coast but ending up stopping at the beach on the border of Torrance and PV. It felt soooo good to walk down to the sand and stand at the ocean, playing chicken with the tides and taking in the spray of the crashing waves.
There weren’t too many people out there, and no one within thirty feet of us on each side of the beach. Other than the slight chill, I felt safe being out there.
Alas, it all ended too quickly and back home we went. My parents drove out with some home cooked food delivery and then back on the couch I sat with my the Olympics. A brief but memorable respite from the week of blahness.
There weren’t too many people out there, and no one within thirty feet of us on each side of the beach. Other than the slight chill, I felt safe being out there.
Alas, it all ended too quic
Publish Post
Sunday, February 21, 2010
Day 126 2/14/10 Sunday
I debated over just how much to share in regards to my relationship with the bf while going through this. I worry about permanently painting him in a horrible light, hanging out there for the world to see, especially when he doesn’t even know I’m publishing a blog about everything or will ever be able to share his perspective. However I’m also hoping that in not censoring my feelings through this ordeal, it’ll remind me of the best and worst of this time.
Today, in a total 180 from Friday, I feel almost as energetic as my old self, positive, somewhat cute in my new skirt and tights, and not so heartbroken anymore. Why? Maybe it’s the beautiful sunny day outside. Maybe it’s because the bf did some adequate damage control in his apologies, his reassurances, his affection, and his minimal complaining in spending the day with my family all day Saturday for Chinese new year’s eve. Or maybe it’s because I feel my best right before the chemo and I gained an extra day of freedom and feeling well with the chemo delayed a day for the President’s day holiday.
Knowing that I’d be cooped up again for the upcoming week, I was restless to be out getting stuff done on this wonderful day. Amazingly, I managed to meet a friend for lunch, do a little unpacking, run some errands on my own and go out for dinner and dessert – all without feeling like I wanted to crawl under the covers and pass out. It’s amazing how being able to do these simple things, even for a day, brings me so much joy again.
Today, in a total 180 from Friday, I feel almost as energetic as my old self, positive, somewhat cute in my new skirt and tights, and not so heartbroken anymore. Why? Maybe it’s the beautiful sunny day outside. Maybe it’s because the bf did some adequate damage control in his apologies, his reassurances, his affection, and his minimal complaining in spending the day with my family all day Saturday for Chinese new year’s eve. Or maybe it’s because I feel my best right before the chemo and I gained an extra day of freedom and feeling well with the chemo delayed a day for the President’s day holiday.
Knowing that I’d be cooped up again for the upcoming week, I was restless to be out getting stuff done on this wonderful day. Amazingly, I managed to meet a friend for lunch, do a little unpacking, run some errands on my own and go out for dinner and dessert – all without feeling like I wanted to crawl under the covers and pass out. It’s amazing how being able to do these simple things, even for a day, brings me so much joy again.
Day 124 2/12/10 Friday
I’m a little heartbroken today.
In counseling, the bf confirmed one of my worst fears. Remember
Here’s the kicker. I know he loves me and will stand by me. But how do we get past this or know if things will be better once I’m done with treatment? I’ll have check ups every 3 months for years. And I’ll have more doctors’ visits than most people for the rest of my life. How do I get past that “sick” label? How do I become that happy positive person again? What if I can’t lose the weight and become fit in a timely manner? I won’t even delve into all the past psychological trauma in regards to my own body issues or experiences with guys in this matter.
Anyway, the bf feels that this is temporary. I feel it is contingent on me getting better physically, mentally, and emotionally. And that, though inevitable, is a lot of pressure. Did I mention that I have more itchy red “stress” bumps all over my hands? SEXY.
In counseling, the bf confirmed one of my worst fears. Remember
Here’s the kicker. I know he loves me and will stand by me. But how do we get past this or know if things will be better once I’m done with treatment? I’ll have check ups every 3 months for years. And I’ll have more doctors’ visits than most people for the rest of my life. How do I get past that “sick” label? How do I become that happy positive person again? What if I can’t lose the weight and become fit in a timely manner? I won’t even delve into all the past psychological trauma in regards to my own body issues or experiences with guys in this matter.
Anyway, the bf feels that this is temporary. I feel it is contingent on me getting better physically, mentally, and emotionally. And that, though inevitable, is a lot of pressure. Did I mention that I have more itchy red “stress” bumps all over my hands? SEXY.
Monday, February 15, 2010
Day 120 2/8/10 Monday
Again, I lost it today out of frustration on my own limitations. The bf has been great at going everywhere with me – we do all our errands together. However, I grew impatient with him today after another late start of getting out of the house, three days in a row.
Normally, I’d just run these errands by myself. No need to wait for each other. And actually I still can. However, it is monumentally more tiring and more of an effort to drive all over the place and lug things around. In that moment, my frustration with his slowness and my own new found dependence on him reached a breaking point.
Normally, I’d just run these errands by myself. No need to wait for each other. And actually I still can. However, it is monumentally more tiring and more of an effort to drive all over the place and lug things around. In that moment, my frustration with his slowness and my own new found dependence on him reached a breaking point.
Thursday, February 11, 2010
Day 113 2/1/10 Monday
Sixth session of chemo done! Two more to go! Maybe today was a bad vein, but today was definitely one of the tougher chemo sessions. The vein hurt again when I was infused with dacabarzine. I also started getting nauseous and experiencing that metal spoon taste in my mouth before I was even done with chemo. It must be that cumulative effect. I’m soooooo glad it’s almost over.
Tired and stressed as he was, the bf picked up dinner and surprised me with some Pinkberry. ☺ He also managed to coordinate with my dad and meet up in the afternoon so that my dad could drop off more of mom’s food for us. It’s time like these I have to stop and make sure I don’t take any of these efforts from my loved ones for granted.
My childhood friend, R, took a day off to take me to chemo and we caught up on the past year’s events. We hadn’t seen each other in a year and unfortunately (or fortunately!) the first time we’re meeting up again is for her to drive me to a chemo session. She cracked me up – to get everyone off her back at work and allow her to come with me, she used the whole “I’m taking my friend to chemo” to make everyone feel bad and leave her alone. Hey, glad to be of service! Whatever works.
Tired and stressed as he was, the bf picked up dinner and surprised me with some Pinkberry. ☺ He also managed to coordinate with my dad and meet up in the afternoon so that my dad could drop off more of mom’s food for us. It’s time like these I have to stop and make sure I don’t take any of these efforts from my loved ones for granted.
My childhood friend, R, took a day off to take me to chemo and we caught up on the past year’s events. We hadn’t seen each other in a year and unfortunately (or fortunately!) the first time we’re meeting up again is for her to drive me to a chemo session. She cracked me up – to get everyone off her back at work and allow her to come with me, she used the whole “I’m taking my friend to chemo” to make everyone feel bad and leave her alone. Hey, glad to be of service! Whatever works.
Wednesday, January 27, 2010
Day 103 1/22/10 Friday
In counseling today, A brought up the C word and how it’s affected the bf and me. It allowed the bf to open up about his father in a way I hadn’t heard before. I started tearing up at his explanations of awkwardness with his dying father toward the end. It also showed me that in a way, I’m bringing up this grieving process in him that he never dealt with. It’s all so sad.
On a good note, counseling between us is still going really well in terms of no actual tears or hurt feelings shed yet! It’s still early, but I guess I was expecting some kind of battlefield at a certain point.
The indigestion and nausea still linger per usual but I’m looking forward to possibly going out for tea with a friend, after being a shut-in all week.
On a good note, counseling between us is still going really well in terms of no actual tears or hurt feelings shed yet! It’s still early, but I guess I was expecting some kind of battlefield at a certain point.
The indigestion and nausea still linger per usual but I’m looking forward to possibly going out for tea with a friend, after being a shut-in all week.
Day 102 1/21/10 Thursday
Everything still tastes disgusting and I still don’t feel too great. Thank you constipation and nausea. I haven’t left the house since Monday’s chemo session but will attempt to go to the support group. It’s funny how comfortable I’ve gotten in discussing how coffee will help my digestion and constipation or how when I sneeze hair falls off my head… with just about anyone who will listen. It’s like I’ve let go my inhibitions on certain topics or maybe I don’t care as much if I make other people uncomfortable?
At the support group last week, one lady said she didn’t want to tell anyone at all about her diagnosis while one of my favorite gals, M, said she “told anyone who had ears.” I was probably somewhere in the middle though closer to M. Might as well get it out there instead of hiding it right?
I also noticed that I’m getting more daring with the eating again. Like sushi (cooked stuff of course!) and sometimes seared stuff on my good weeks. Technically I only need to be careful when my white blood cell count is low, but it’s never been an issue yet.
While everyone was extremely happy for me about the chemo update, the bf seemed cautiously happy and wary. In fact, he felt that more than ever, we should be careful about me getting sick or in contact with germs so as to not derail the treatment schedule in any way. I guess I need someone like that looking out for me, but I hope this means he feels better overall about the severity of my condition.
At the support group last week, one lady said she didn’t want to tell anyone at all about her diagnosis while one of my favorite gals, M, said she “told anyone who had ears.” I was probably somewhere in the middle though closer to M. Might as well get it out there instead of hiding it right?
I also noticed that I’m getting more daring with the eating again. Like sushi (cooked stuff of course!) and sometimes seared stuff on my good weeks. Technically I only need to be careful when my white blood cell count is low, but it’s never been an issue yet.
While everyone was extremely happy for me about the chemo update, the bf seemed cautiously happy and wary. In fact, he felt that more than ever, we should be careful about me getting sick or in contact with germs so as to not derail the treatment schedule in any way. I guess I need someone like that looking out for me, but I hope this means he feels better overall about the severity of my condition.
Friday, January 22, 2010
Day 96 1/15/10 Friday
What an eventful day! First the bf and I FINALLY started counseling together. The original purpose was to help him with the caregiver support type grief counseling. But now I think it’ll also help us with all of our stupid little problems and become more of a couples counseling too.
After the counseling, I trekked back out to Pasadena again for the doctor’s visit and the results of my PET scan. I got the BEST NEWS EVER! Apparently most of the lymph nodes have shrunk back down to normal and the metabolic rate of the cancer is near negative! That means, she’s reducing the amount of chemo to 4 more sessions. Then a month of radiation. I nearly started crying at the office when she told me. Instead of 4-6 more months of chemo, it’s only two!!!
Of course there will be scans and blood tests every 3 months for the next three to five years or so, but I’m half way done! I’m almost in shock that I might not get to be taken care of by these wonderful nurses so soon.
After the counseling, I trekked back out to Pasadena again for the doctor’s visit and the results of my PET scan. I got the BEST NEWS EVER! Apparently most of the lymph nodes have shrunk back down to normal and the metabolic rate of the cancer is near negative! That means, she’s reducing the amount of chemo to 4 more sessions. Then a month of radiation. I nearly started crying at the office when she told me. Instead of 4-6 more months of chemo, it’s only two!!!
Of course there will be scans and blood tests every 3 months for the next three to five years or so, but I’m half way done! I’m almost in shock that I might not get to be taken care of by these wonderful nurses so soon.
Day 91 1/9/10 Saturday
Woke up on the wrong side of the bed today. The bf decided to stay up late and sleep in for the hell of it. Unfortunately he woke me up coming to bed, and I couldn’t fall back asleep the rest of the night despite sleeping pills. I need so much sleep and rest all the time. Like fourteen hours worth some days. 12 hours at night and a two hour nap in the afternoon. I’m like a bear. No wait, an old cat.
Feeling a bit cabin fevery today since I’m not supposed to be out amongst people this weekend. I have no where to crash at today since most people have plans. That means I’m stuck at home for today. It’s not going to stop me from picking up an assortment of food. I wonder if a bigger place will help with some of the cabin feverness but not sure…
Feeling a bit cabin fevery today since I’m not supposed to be out amongst people this weekend. I have no where to crash at today since most people have plans. That means I’m stuck at home for today. It’s not going to stop me from picking up an assortment of food. I wonder if a bigger place will help with some of the cabin feverness but not sure…
Day 90 1/8/10 Friday
Finally, after five days… relief. That’s four days of Miralax and a day of coffee thrown in for good measure. Stupid chemo.
Hair is barely hanging on. The bf thinks it’s hilarious to pet my head and see how much hair falls out. He seems to have made more peace with my possible/eventual baldness than I have. I’ve taken to baring my teeth and attempting to bite his hand when it comes near my head. Because I’m all mature about it that way.
On a bright note, looks like we’re the front runners for the new apartment one street over. I’m so excited though the prospect of packing and moving seem extremely daunting at the moment. I will celebrate and worry on Monday when the management company confirms whether we get the apartment for a good price or not.
Hair is barely hanging on. The bf thinks it’s hilarious to pet my head and see how much hair falls out. He seems to have made more peace with my possible/eventual baldness than I have. I’ve taken to baring my teeth and attempting to bite his hand when it comes near my head. Because I’m all mature about it that way.
On a bright note, looks like we’re the front runners for the new apartment one street over. I’m so excited though the prospect of packing and moving seem extremely daunting at the moment. I will celebrate and worry on Monday when the management company confirms whether we get the apartment for a good price or not.
Thursday, January 21, 2010
Day 88 1/6/10 Wednesday
The number 88 is supposed to be lucky in Chinese, but I really just feel kind of blah today. I guess you could say I’m lucky in that I don’t feel as bad as I did last time? Apparently, I snored like an old man ALL night. Poor bf. Well, at least I slept very well and all through the night. Yay for pills! Even though I was still tired this morning trying to get up before noon.
Also, yay for Trader Joe’s triple ginger thins.! They are the only things that taste good to me right now. That and my homemade iced tea and the Ghiradelli’s peanut butter chocolate squares that bf’s mother sent us. I’m so gonna be fat.
I’m in this strange cleaning phase, where I want to put away all the Xmas decorations, declutter, vacuum, etc. Except that I don’t have the energy to do it all and have to delegate vacuuming, dishwashing, and trash to the bf. This is not his day.
Also, yay for Trader Joe’s triple ginger thins.! They are the only things that taste good to me right now. That and my homemade iced tea and the Ghiradelli’s peanut butter chocolate squares that bf’s mother sent us. I’m so gonna be fat.
I’m in this strange cleaning phase, where I want to put away all the Xmas decorations, declutter, vacuum, etc. Except that I don’t have the energy to do it all and have to delegate vacuuming, dishwashing, and trash to the bf. This is not his day.
Monday, January 11, 2010
Day 78 12/27/09 Sunday
Hallelujah I don’t feel like dying when I have to go to the bathroom. TMI, I know. But you grow to cherish these little basic things. It’s a gloomy kinda day and I have a touch of cabin fever as the bf and I are both stuck at home. Him, by choice and me because this is the weekend I’m not supposed to go out and play. Yet, I have no one’s house to go to as everyone else is out and playing.
The bf needs a break from me and I’m trying not to take it personally. Doctor friend and her husband assured it’s normal even if ill-timed. I also really really really wish we could go to a support group or counseling NOW. Unfortunately the one week he has off, so do all the counselors and support groups. Sigh.
The bf needs a break from me and I’m trying not to take it personally. Doctor friend and her husband assured it’s normal even if ill-timed. I also really really really wish we could go to a support group or counseling NOW. Unfortunately the one week he has off, so do all the counselors and support groups. Sigh.
Day 75 12/24/09 Thursday
Christmas eve! And I could barely catch up with the spirit of it thanks to the nausea and painful constipation this week. Fun fun… I mean painful, like I thought I was going to die embarrassingly on the toilet. Sigh. I haven’t had the energy or motivation to write much. I actually haven’t the energy or motivation to do barely anything, like take care of financial loose ends and be on top of things better.
The depression and the bickering with the bf are definitely better now. Or just replaced with sickness and lack of energy. I missed the support group today because I was feeling so gross. Hopefully tomorrow my body will cooperate with the Christmas spirit!
The depression and the bickering with the bf are definitely better now. Or just replaced with sickness and lack of energy. I missed the support group today because I was feeling so gross. Hopefully tomorrow my body will cooperate with the Christmas spirit!
Day 71 12/19/09 Saturday
The bf asked me what was wrong and why I looked so sad. I proceeded to explain that I felt lonely this week. Not only am I physically lonely from being at home by myself most days, but mentally lonely in this crap predicament. I still see friends all the time, but it’s been nearly 10 months since I’ve been working and having day to day interactions with people.
The bf stepped away to take a shower and came back out all depressed looking. Then he proceeded to ask me “Do you have someone who can come take care of you for a week?” Wha???? He explained that he needed to get away for a week, away from the negativity, and get refreshed. I was livid.
“I tell you I’m lonely and THIS is how you respond?
He explained that he needed to get away in order to come back and be the positive person that I needed. Still tactless in how he initially presented it and I am not happy. It was an awful, hurt filled day.
I ran errands and sat in the car to call my doctor friend and her husband for advice, since they’re likely going through the same thing. Doctor friend, of course agreed with me and understood my hurt feelings, but deferred to her husband since he was the patient and also a guy. Her husband explained “what’s one week out of 52? If he can get away for a week, he’ll come back a better person for you.” Oooook. I’ll buy it, but I’m still not happy. Plus, his way of coping is to go to sleep at like 8:30pm and hibernate. Bastard.
The bf stepped away to take a shower and came back out all depressed looking. Then he proceeded to ask me “Do you have someone who can come take care of you for a week?” Wha???? He explained that he needed to get away for a week, away from the negativity, and get refreshed. I was livid.
“I tell you I’m lonely and THIS is how you respond?
He explained that he needed to get away in order to come back and be the positive person that I needed. Still tactless in how he initially presented it and I am not happy. It was an awful, hurt filled day.
I ran errands and sat in the car to call my doctor friend and her husband for advice, since they’re likely going through the same thing. Doctor friend, of course agreed with me and understood my hurt feelings, but deferred to her husband since he was the patient and also a guy. Her husband explained “what’s one week out of 52? If he can get away for a week, he’ll come back a better person for you.” Oooook. I’ll buy it, but I’m still not happy. Plus, his way of coping is to go to sleep at like 8:30pm and hibernate. Bastard.
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