Seriously, today is the first day I’ve even managed to put on a bra and not wear the same sweatpants and shirt from the past three days. The support group provides me a reason to leave the house since the bf seems perfectly comfortable working from home and not leaving for days.
It was a small group today, but always worthwhile and helpful. I even got some tea with one of the ladies and gave her a lift back to Santa Monica. During our car ride, she told me her story – how her boyfriend of 17 years left her when she got breast cancer, how he turned their son against her, cheated her out of all the money they ever earned together in their landscaping business, lost her home and got her possessions stolen by her landlord during treatment…
There are just no words to say to a story like that. I can not relate or grasp the magnitude of such loss. And yet, we still bonded over our mutual frustration at weight gain and loss of independence in being able to physically do the things we once did. I echoed the same sentiment I’ve been told many times. “It’ll take time but we’ll slowly lose the weight and get back in shape. We’ll get back to the things we used to do.” But we both chuckled once the words lazily rolled off my tongue. “At least that’s what they say,” I added.
Showing posts with label Reactions. Show all posts
Showing posts with label Reactions. Show all posts
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.
Saturday, March 6, 2010
Day 141 3/1/10 Monday
Last chemo!!!!!!! Though I’m just tired and my hands are all weirdly tingly. I think it’ll hit me more when I’m over this cycle and realize I don’t have to go back after 2 weeks anymore. Hallelujah. It feels a bit anticlimactic because there’s still much to do.
Echocardiogram, pulmonary function test, PET scan, CT scan, more blood tests… And of course I’ll be back at the oncologist’s in 3 weeks anyway
Echocardiogram, pulmonary function test, PET scan, CT scan, more blood tests… And of course I’ll be back at the oncologist’s in 3 weeks anyway
Day 137 2/25/10 Thursday
Three things occurred today at the support group.
1) One of the ladies shared her story of having a bad day, when nothing was going right. She simply could not find the address to attend a cancer related seminar, the GPS was out of batteries, and her cigarette lighter in the car was broken so that she was unable to plug the GPS in. She couldn't even call the hospital to let them know why she wouldn’t make it and it frustrated her so much.
It sounds so silly yet so relatable for all of us at the group. We have days when doing a simple thing like that is such an effort and not being able to do it seems like an epic failure.
2) I realized I may end up growing a mullet. I’ll have my remaining wispy lengths of hair, but new hair will begin growing in at the crown of my head while all the hair on the back of my neck will fall out thanks to the radiation. I’m going to have this multi-layer hair thing going on. Will definitely need to shave it so that it all grows in together.
3) Two of the ladies assured me that COBRA had been extended from 15 months to 18 months to 3 years and that I should look into it. They also mentioned that legally, I would be able to get help in maintaining my health care. As one of the ladies put it, “I am a cancer patient and I am one of the most important people!”
1) One of the ladies shared her story of having a bad day, when nothing was going right. She simply could not find the address to attend a cancer related seminar, the GPS was out of batteries, and her cigarette lighter in the car was broken so that she was unable to plug the GPS in. She couldn't even call the hospital to let them know why she wouldn’t make it and it frustrated her so much.
It sounds so silly yet so relatable for all of us at the group. We have days when doing a simple thing like that is such an effort and not being able to do it seems like an epic failure.
2) I realized I may end up growing a mullet. I’ll have my remaining wispy lengths of hair, but new hair will begin growing in at the crown of my head while all the hair on the back of my neck will fall out thanks to the radiation. I’m going to have this multi-layer hair thing going on. Will definitely need to shave it so that it all grows in together.
3) Two of the ladies assured me that COBRA had been extended from 15 months to 18 months to 3 years and that I should look into it. They also mentioned that legally, I would be able to get help in maintaining my health care. As one of the ladies put it, “I am a cancer patient and I am one of the most important people!”
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…
Sunday, February 21, 2010
Day 127 2/15/10 Monday
I can’t stop shopping the past week and a half. A little bit of retail therapy and a little bit, hey none of my clothes (especially pants!) fit very well anymore thanks to the weight gain. Oh the fun of being a sedentary person. So today I bought four things – all black. I’m going for the goth/slimming look until I feel better about my body again.
Now, onto my hair. I’ve always been grateful for the strong hair genes from my dad. Now more than ever, I’m grateful I had so much hair to start with. The amount I shed, especially when I have to wash my hair, is honestly horrifying. Every time I think, “Alright this is it. THIS is when I’ll have to shave my head because there’s gonna be a big ole bald spot on the back of my head.” But no. It just gradually thins more and more. And I shed more and more, which is driving me crazy. I keep wondering if it’ll last through two more chemos… if I have to shave my head after the last chemo, I’m gonna be a little pissed. Most of all, I wish I could just know.
A, our counselor, put it best. It’s such an “undignified” disease. Back to the chair tomorrow.
Now, onto my hair. I’ve always been grateful for the strong hair genes from my dad. Now more than ever, I’m grateful I had so much hair to start with. The amount I shed, especially when I have to wash my hair, is honestly horrifying. Every time I think, “Alright this is it. THIS is when I’ll have to shave my head because there’s gonna be a big ole bald spot on the back of my head.” But no. It just gradually thins more and more. And I shed more and more, which is driving me crazy. I keep wondering if it’ll last through two more chemos… if I have to shave my head after the last chemo, I’m gonna be a little pissed. Most of all, I wish I could just know.
A, our counselor, put it best. It’s such an “undignified” disease. Back to the chair tomorrow.
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.
Day 119 2/7/10
I realized that by titling each entry “Day #whatever,” it seems much like the way prisoners keep track of their jail terms, with hash marks on the wall. (They probably have much more sophisticated ways of keeping track now…) And I guess you can say that in a way, I do feel like I’m imprisoned by my own body.
Day 118 2/6/10 Saturday
I woke up sobbing today. And I’m sure I scared the bejeezus out of the bf. In the end, Wavy talked me out of my tree and I feel better. Nothing like a great friend to talk some sense into you and make you laugh.
It’s as if a wave of weariness and realization hit me this morning. How did I get here? I miss my old life when I could feel pretty, dress up (in clothes that still felt comfortable!), work out when frustrated, and go out with friends whenever I wanted and not by some chemo/nausea schedule. I miss being wanted by my bf and complimented by coworkers.
My hands don’t even look like mine. They’re darker and dry, the nail beds are purpley and they look like a sick person’s hands.
I think a lot of the things I touched upon yesterday, including the most recent counseling session and the heavy mood of the support group lately are all accumulating in my head. I just felt terribly alone for a moment.
It’s as if a wave of weariness and realization hit me this morning. How did I get here? I miss my old life when I could feel pretty, dress up (in clothes that still felt comfortable!), work out when frustrated, and go out with friends whenever I wanted and not by some chemo/nausea schedule. I miss being wanted by my bf and complimented by coworkers.
My hands don’t even look like mine. They’re darker and dry, the nail beds are purpley and they look like a sick person’s hands.
I think a lot of the things I touched upon yesterday, including the most recent counseling session and the heavy mood of the support group lately are all accumulating in my head. I just felt terribly alone for a moment.
Thursday, February 11, 2010
Day 117 2/5/10 Friday
I didn’t feel like speaking much yesterday at the support group as I was extremely nauseous and it was a small group with new people. So today, I hogged up most of the counseling time with the bf. I know the bf and I still need to work on better communication issues. However, it was a relief to talk about how I feel about things lately.
Mainly I’ve been feeling guilt. Guilt over looking able-bodied, and yet being completely useless from the constant fatigue. Guilt over hating chemo though I know it’s working extremely well on me. Guilt over complaining about anything at the support group, when a lot of the ladies have it so much worse than me.
Also stress and worry. What if the cancer comes back? What is really the difference between “cure” and “remission” in my case? What if I don’t lose all this weight? What if I’m never back to “me” again? How will I be able to have the stamina to exercise, work in the demanding animation industry, or do all the things I used to do again?
I keep reminding myself that it’s normal to have the fatigue and that it will take at least 3 months to even a year or so regain my strength. But when you add all that time up with the treatment duration, the diagnosis timeline, and all those months before that when I was just mysteriously ailing, it’s a daunting amount of time. And it kinda pisses me off.
Mainly I’ve been feeling guilt. Guilt over looking able-bodied, and yet being completely useless from the constant fatigue. Guilt over hating chemo though I know it’s working extremely well on me. Guilt over complaining about anything at the support group, when a lot of the ladies have it so much worse than me.
Also stress and worry. What if the cancer comes back? What is really the difference between “cure” and “remission” in my case? What if I don’t lose all this weight? What if I’m never back to “me” again? How will I be able to have the stamina to exercise, work in the demanding animation industry, or do all the things I used to do again?
I keep reminding myself that it’s normal to have the fatigue and that it will take at least 3 months to even a year or so regain my strength. But when you add all that time up with the treatment duration, the diagnosis timeline, and all those months before that when I was just mysteriously ailing, it’s a daunting amount of time. And it kinda pisses me off.
Day 116 2/4/10 Thursday
Proof that my taste buds/sense of smell are completely f’ed up. I walked out of the support group today and into the street smelling onion rings. I was momentarily excited until I realized it was car exhaust. Or was it? Because then it smelled like onion rings again. Then car exhaust. Could have been both but I saw no evidence of fast food anywhere. I’m going insane.
Later that night as I devoured the egg custard my parents made me, the bf loudly exclaimed that it smelled like rotten eggs. Say what??? I stuck my nose into the bowl and barely smelled a thing. And you know what? It tasted damm good. So I'm gonna chalk that one up to him being crazy and prejudiced against custard. (Too allay any fears, I called my parents to make sure it was still good and that they had some that day too.. Whew…)
Later that night as I devoured the egg custard my parents made me, the bf loudly exclaimed that it smelled like rotten eggs. Say what??? I stuck my nose into the bowl and barely smelled a thing. And you know what? It tasted damm good. So I'm gonna chalk that one up to him being crazy and prejudiced against custard. (Too allay any fears, I called my parents to make sure it was still good and that they had some that day too.. Whew…)
Day 115 2/3/10 Wed
Completely useless today. Nauseous, tired, and frustrated from not being able to unpack or clean up the place. I’m almost embarrassed when the cable guy or maintenance guys come in to do their work. Everything is in shambles and I have to remain patient with myself and the bf for not doing everything at once. It will take time but I just want to be settled in and comfortable. At least I finally have TV and internet!
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.
Day 112 1/31/10 Sunday
Wow. My entire body is tired to the bone. And I’ve only unpacked a little. This is stressing.
Day 111 1/30/10 Saturday
Move day! And I am almost useless in this move. Thank goodness for my parents and friends. What was I thinking again? Oh yeah, more space so I have less cabin fever and the bf and I don’t kill each other.
Friday, February 5, 2010
Day 109 1/28/10 Thursday
This sounds terrible, but one of the things I worried about in joining this support group was becoming attached to any of the members and dealing with her death. One of the ladies who used to go to Helen’s Room decided to stop chemo and spend the rest of her days under hospice care at home.
Again, I sound awful, but I’m relieved that I never met her. Most of the ladies who had known her were understandably upset – including one especially cheerful one who broke into tears. To make matters tougher, one of the ladies there with likely terminal breast cancer, whom I have know for a few sessions, started sobbing. It turns out that she had also been leaning toward stopping chemo and enjoying a better quality of life for the rest of her days.
I realize I’m lucky because death has rarely crossed my mind. From the get-go the doctor was so positive about Hodgkins Lymphoma being a curable disease, that I chose to take my cue from her than believe all those statistics and articles I’d read. As awful as chemo side effects are, I’m still better off than before I was treated. I was extremely swollen, in pain, and feeling terrible in general.
I’m not sure who has more to live for – me because I’m young and have yet to go through many life experiences like marriage, kids, house, etc. Or the ladies who have decided to stop fighting since they have loving spouses and kids who depend on and love them.
I do understand that statistically, chances are that my life span may be shorter. And I imagine if I had a recurrence it would devastate me. I see how a recurrence, much less a multiple one could task your fighting spirit but I’ll just have to (cliche!) cross that bridge when I come to it.
Again, I sound awful, but I’m relieved that I never met her. Most of the ladies who had known her were understandably upset – including one especially cheerful one who broke into tears. To make matters tougher, one of the ladies there with likely terminal breast cancer, whom I have know for a few sessions, started sobbing. It turns out that she had also been leaning toward stopping chemo and enjoying a better quality of life for the rest of her days.
I realize I’m lucky because death has rarely crossed my mind. From the get-go the doctor was so positive about Hodgkins Lymphoma being a curable disease, that I chose to take my cue from her than believe all those statistics and articles I’d read. As awful as chemo side effects are, I’m still better off than before I was treated. I was extremely swollen, in pain, and feeling terrible in general.
I’m not sure who has more to live for – me because I’m young and have yet to go through many life experiences like marriage, kids, house, etc. Or the ladies who have decided to stop fighting since they have loving spouses and kids who depend on and love them.
I do understand that statistically, chances are that my life span may be shorter. And I imagine if I had a recurrence it would devastate me. I see how a recurrence, much less a multiple one could task your fighting spirit but I’ll just have to (cliche!) cross that bridge when I come to it.
Day 108 1/27/10 Wednesday
I have been delinquent on the entries again on account of moving matters and feeling good enough to go out and get stuff done this week. That being said, I still am easily fatigued and the nausea lingers here and there. The effects are definitely cumulative. Thank god it’s only three more sessions. The inside of my mouth already starts tasting funny just thinking of upcoming chemo next week. Often, I feel actual dread even if it’s a week away.
The fatigue makes packing and moving stuff around pretty difficult. However, true to his word, the bf has been doing most of the work and only balked once when I had to open up a box and retrieve something for my brother.
I’m wondering if the new place will help. On one hand, I have more space! On the other, I am more isolated from the outside world since our apartment will no longer open up directly onto the street like the current one. I also won’t get to see my neighbor and their dog as often.
I’m excited that I’m more than half done with chemo, but the exhilaration subsides when I realize I still have about 3 more months before I might be completely done. Still, it’s better than 5-7 months! Somehow, you just always want more.
The fatigue makes packing and moving stuff around pretty difficult. However, true to his word, the bf has been doing most of the work and only balked once when I had to open up a box and retrieve something for my brother.
I’m wondering if the new place will help. On one hand, I have more space! On the other, I am more isolated from the outside world since our apartment will no longer open up directly onto the street like the current one. I also won’t get to see my neighbor and their dog as often.
I’m excited that I’m more than half done with chemo, but the exhilaration subsides when I realize I still have about 3 more months before I might be completely done. Still, it’s better than 5-7 months! Somehow, you just always want more.
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