No more being chained to this sucker on the recliner chair or dragging it into the bathroom with me. The brown bag one is the EVIL one. The light sensitive Dacarbazine that take 3 hours for infusion and burns like hell. Grrrrrr....
Saturday, April 10, 2010
Mr. IV Cart
No more being chained to this sucker on the recliner chair or dragging it into the bathroom with me. The brown bag one is the EVIL one. The light sensitive Dacarbazine that take 3 hours for infusion and burns like hell. Grrrrrr....
Day 148 3/8/10 Monday
Doesn’t quite feel like week 2 yet. I still feel like week 1 of chemo, with the achiness, weak stomach and listlessness. This is probably why I’m not quite celebrating the end of chemo yet. I’m still being slapped around by its effects.
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 144 3/4/10 Thursday
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.
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.
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 138 2/26/10 Friday
Today marks the one year anniversary of NOT being a part of the work force. My how time flies… and who knew how much insanity would occur the minute I stepped away from the job. All I can say is thank god our finance manager convinced me to go with COBRA health insurance. Best decision EVER.
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.
Day 135 2/23/10 Tuesday
Hot flashes! How awesomely annoying. It’s as if I were going through menopause.
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
Day 130 2/18/10 Thursday
Wow, the wave of nausea hit me today like a giant slap in the face. Or maybe a punch in the gut? Because my stomach is killing me too. And I no longer want to eat or move or watch tv or do anything. Time slows to a crawl. All I can do is wait for it to pass.
Day 129 2/17/10 Wednesday
Not as nauseous as last time so far, but my stomach keeps bothering me. I’m a bit spoiled by all the food my mom makes me. Without it this week, I’m just eating whatever’s around. Not only do I feel groggy but it’s as if my brain has slowed down too. Handling anything harder than watching tv or reading magazines is tough. Again, I didn’t make it outside the house at all, which is par for the course those first two days after chemo.
Day 128 2/16/10 Tuesday
Back to feeling blah again. Mainly in my stomach. But my god! Only one left! I managed to eat lots of delicious foods thanks to my brother’s company today. Though my arm ached the whole time during chemo (and dammit, it still does even now at night), the nausea hasn’t completely kicked in. So I pigged out as usual.
At least there are Olympics to veg out to all week.
At least there are Olympics to veg out to all week.
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.
Tuesday, February 16, 2010
Day 123 2/11/10 Thursday
After a couple of pretty heavy group meetings, today’s was somewhat light and fun. I really love the women in the group. Everyone seems so humble and kind and not just by virtue of this disease either. Everyone has at least a couple of things in common with each other despite age, ethnicity or upbringing.
I brought up my bout of weeping from the past weekend and A encouraged us to talk about how each of our situations stacked up to each other – whether it made us appreciate what we had more or guilty of what we did have compared to someone who had it worse. It felt good to get it off my chest but what helped the most today was the laughter.
I brought up my bout of weeping from the past weekend and A encouraged us to talk about how each of our situations stacked up to each other – whether it made us appreciate what we had more or guilty of what we did have compared to someone who had it worse. It felt good to get it off my chest but what helped the most today was the laughter.
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.
Day 107 1/26/10 Tuesday
I have eczema! Stupid chemo and incessant handwashing… The dermatologist noticed that none of my current medications or cancer status was in the computer. Strange. Anyway, she told me I looked good, gained some weight (pooh) and we caught up on our personal lives. Yes, THIS is why I love all my doctors in this network and will drive 20 miles out there. Sigh.
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.
Day 100 1/19/10 Tuesday
Wow, it’s my 100th day of living with this and I’ve spent it like a grumpy Rip Van Winkle. Slept in till nearly 1pm, took a nap from 5-7 and cranky about see-sawing between hunger and nausea/too-fullness. Haven’t done much today other than open all the exciting mail. Yup, that was the highlight of the day. I should pack, I should read, I should write more, and I should file. But whatever.
Day 99 1/18/10 Monday
Chemo is now more than half over! Whoo hoo! It was the fastest chemo treatment yet. It took just under 4 ½ hours instead of the usual 5+ hours. The bf came with me, once again, under pouring rain conditions. We both slept through a chunk of it, read magazines, and chatted a bit. The best part was that for the first time, the dacabarzine didn’t burn like hell. I don’t know whether they found a tougher vein or if it was more saline, but yay for the nurses!
The downfall, since nothing can be all that perfect, is that the nausea started especially early. It started today right after our afternoon nap. Bleh.
The downfall, since nothing can be all that perfect, is that the nausea started especially early. It started today right after our afternoon nap. Bleh.
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 94 1/13/10 Wednesday
PET/CT scan day! The PET scan is no fun, on account of wanting to throw up when you first go in the machine, but I survived.
It reaffirmed to me how much I love like 95% of my health care team. Joe, the tech, not only remembered me, he also remembered that my veins were tough to get an IV in on the first try. He also got my thank you card, saying other than his immediate family, mine was the only other card he got.
I have to admit, though I’m good with thank you cards, I never thought to thank my doctors or techs until all of this happened. And now that I think of it, why don’t we all do that more? I know they’re doing their job, but I imagine like every other job, a little appreciation goes a long way and hey, helps the patient too!
It reaffirmed to me how much I love like 95% of my health care team. Joe, the tech, not only remembered me, he also remembered that my veins were tough to get an IV in on the first try. He also got my thank you card, saying other than his immediate family, mine was the only other card he got.
I have to admit, though I’m good with thank you cards, I never thought to thank my doctors or techs until all of this happened. And now that I think of it, why don’t we all do that more? I know they’re doing their job, but I imagine like every other job, a little appreciation goes a long way and hey, helps the patient too!
Day 92 1/11/10 Monday
I am restless but may have overbooked myself for the rest of the week in overcompensating for the past week of inactivity. My right arm inexplicably aches. Hopefully the chiropractor will be able to help me out with all the bizarre aches and pains I’ve been getting.
The PET/CT scan is happening Wednesday. That should tell us a lot about my progress. Otherwise what I feel is drudgery toward more of the chemo. It’s not a fun schedule. And yet it’s the only sense of schedule I have these days. I imagine I might even miss the attentiveness of the nurses, the attention and leeway from friends and family, and having to keep to this rigorous treatment once I’m done. Kind of like Stockholm syndrome but with a disease. It’s a wary dance.
To top it off, my flaky shedding head, it’s like Ally Sheedy’s character in The Breakfast Club, where she shakes her head vigorously and dandruff and crap fall to the desk. I’m gross.
The PET/CT scan is happening Wednesday. That should tell us a lot about my progress. Otherwise what I feel is drudgery toward more of the chemo. It’s not a fun schedule. And yet it’s the only sense of schedule I have these days. I imagine I might even miss the attentiveness of the nurses, the attention and leeway from friends and family, and having to keep to this rigorous treatment once I’m done. Kind of like Stockholm syndrome but with a disease. It’s a wary dance.
To top it off, my flaky shedding head, it’s like Ally Sheedy’s character in The Breakfast Club, where she shakes her head vigorously and dandruff and crap fall to the desk. I’m gross.
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 89 1/7/10 Thursday
Everything tastes blah again except for sweets. Some of the ladies from the support group say you can taste spicy and sour too, but I don’t like either of those flavors.
I have a hard time keeping track of what pills to take and consequently always late on taking them or actually forgetting for a whole day. That’s probably not good. Let me see, I have two to take nightly, one to take three times a day, one to take twice a day but only for this week, and another to take once in the morning but also for just half this week. Seriously, how does one keep track or space them out correctly?
Today’s support group was lovely as usual but also a little scary. The ladies’ stories of chemo’s cumulative effects, suffering radiation burns or the recurrence of cancer after thinking you’ve beat it - it’s all sobering. I’m trying to stay positive as it’s a new year and hey, no fights with the bf this week!
I’d really like to move to a bigger place even if it’s fiscally somewhat impractical. I was nearly led on by a scam for a beautiful place in Santa Monica. Thank goodness for my savvy brother. And damn those scammers all to hell. That pisses me off. Hopefully we can still move one street over and get a good deal. It would be something to look forward to in the near future. Other things to look forward to this year – being done with chemo and radiation, a fun new job, traveling again, possibly getting engaged, attending some close friends’ wedding, and eating whatever I want again – you know, within reason so that I can still wear all my clothes and not become a fat cow.
I have a hard time keeping track of what pills to take and consequently always late on taking them or actually forgetting for a whole day. That’s probably not good. Let me see, I have two to take nightly, one to take three times a day, one to take twice a day but only for this week, and another to take once in the morning but also for just half this week. Seriously, how does one keep track or space them out correctly?
Today’s support group was lovely as usual but also a little scary. The ladies’ stories of chemo’s cumulative effects, suffering radiation burns or the recurrence of cancer after thinking you’ve beat it - it’s all sobering. I’m trying to stay positive as it’s a new year and hey, no fights with the bf this week!
I’d really like to move to a bigger place even if it’s fiscally somewhat impractical. I was nearly led on by a scam for a beautiful place in Santa Monica. Thank goodness for my savvy brother. And damn those scammers all to hell. That pisses me off. Hopefully we can still move one street over and get a good deal. It would be something to look forward to in the near future. Other things to look forward to this year – being done with chemo and radiation, a fun new job, traveling again, possibly getting engaged, attending some close friends’ wedding, and eating whatever I want again – you know, within reason so that I can still wear all my clothes and not become a fat cow.
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.
Day 87 1/5/10 Tuesday
This morning I blew my nose and hair fell off my head. That is so annoying. My hair thins more and more each day. Yet, it’s not quite so bad where I have a bald spot yet, forcing my hand to shave it all off. This in between stage is the pits, but maybe when I’m bald I’ll be singing another tune. For now, I shed more than my cat!
On a bright note, the doctor said four more cycles (or months) should likely do the trick for kicking the cancer’s ass. Of course, we still have to battle the ever retarded Blue Shield and get my PET/CT scans approved for next week. That way, she can check the progress to confirm her guestimate.
I also got a slew of errands done today in preparation for the next couple days of staring at the wall time. I’ve actually been waiting for the nausea and metal spoon taste to set in today, but it’s nearly 8pm and it hasn’t hit me yet. It usually hits by late afternoon but maybe I lucked out today.
On a bright note, the doctor said four more cycles (or months) should likely do the trick for kicking the cancer’s ass. Of course, we still have to battle the ever retarded Blue Shield and get my PET/CT scans approved for next week. That way, she can check the progress to confirm her guestimate.
I also got a slew of errands done today in preparation for the next couple days of staring at the wall time. I’ve actually been waiting for the nausea and metal spoon taste to set in today, but it’s nearly 8pm and it hasn’t hit me yet. It usually hits by late afternoon but maybe I lucked out today.
Day 86 1/4/10 Monday
Round 4 (or end of cycle 2) for chemo. Pigged out on McDonalds AND sushi today, bracing myself for the next few days of eating blahness and nausea. I probably should take this opportunity to eat healthier. One of the worst news I’ve gotten from the doctor during this debacle (other than “you have cancer”) has been “if you thought this was a weight loss plan, it’s not… the (anti-nausea) meds have gotten so good, most patient tend to gain weight.”
Well great. Not trying to be all ungrateful or anything, but since I was all prepared to be puking my guts out or never wanting to eat, I figured I’d look at it on the bright side as an opportunity to lose weight. Now, the joy of eating on my good weeks, as if the apocalypse is about to rein about us at any minute, is lessened. I’m gonna be bald AND fat. Sexy.
Other than being cared for by awesome nurses, the whole chemo IV drip part is uncomfortable. The nurses have to come by every 10-15 minutes with hot towels on my arm to dilate the vein. Otherwise, it’s this unpleasant pressure on the vein akin to an awful burning sensation. Yeah, sounds horrifying to me too.
Well great. Not trying to be all ungrateful or anything, but since I was all prepared to be puking my guts out or never wanting to eat, I figured I’d look at it on the bright side as an opportunity to lose weight. Now, the joy of eating on my good weeks, as if the apocalypse is about to rein about us at any minute, is lessened. I’m gonna be bald AND fat. Sexy.
Other than being cared for by awesome nurses, the whole chemo IV drip part is uncomfortable. The nurses have to come by every 10-15 minutes with hot towels on my arm to dilate the vein. Otherwise, it’s this unpleasant pressure on the vein akin to an awful burning sensation. Yeah, sounds horrifying to me too.
Day 83 1/1/10 Friday
Well, first day of the new year and it’s the same ole crap.. The bf is depressing the hell out of me and I have chemo on Monday. I feel like I really need to make the most of the “good” weekends and I do – I try to see friends and do low key things out of the house. However, I’d like to do more fun things with the bf without him worrying or not being in the mood that particular time. More than ever, I have a freakin schedule now and he really needs to understand that.
The support group yesterday is always good. The two ladies who run it are very smooth at keeping things running along lightly and filling in the awkward spaces when a particular member is down or in the middle of an emotional breakdown.
I unloaded a list of new symptoms on the doctor yesterday and she gave me various meds for nearly each of them. One of them seems to be the early stages of neuropathy. My fingertips are mildly desensitized and my thumb joints are aching. I’m staring to lack the strength to open caps or do anything that requires pressure on my poor little opposable thumbs.. However, now I’m yearning to play the piano!
The support group yesterday is always good. The two ladies who run it are very smooth at keeping things running along lightly and filling in the awkward spaces when a particular member is down or in the middle of an emotional breakdown.
I unloaded a list of new symptoms on the doctor yesterday and she gave me various meds for nearly each of them. One of them seems to be the early stages of neuropathy. My fingertips are mildly desensitized and my thumb joints are aching. I’m staring to lack the strength to open caps or do anything that requires pressure on my poor little opposable thumbs.. However, now I’m yearning to play the piano!
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 77 12/26/09 Saturday
Luckily, Christmas was a blast with family. My stomach was cooperative and I enjoyed some DELICIOUS food for lunch and dinner. Ahhh, that makes me so happy. I even scored some leftovers from my aunt.
I see that I’m getting sparser with my writing again like the other blog, but there are days, especially like this week when I feel so lackluster and depleted of energy and motivation. Someone, (I forget who since I’m losing my memory) told me to try to at least write one line each day, even if it’s something like “I feel crappy today.”
In some ways, chemo is getting tougher. I guess the side effects are just cumulative. My hair thins more and more each day though I guess I still look fine. Shedding so much and losing clumps of hair in the shower everyday is driving me mad. It’s only a matter of time. Everyone is always so surprised so see that I still have hair and not all pale and sickly.
The nausea seems to get worse and last longer though I have yet to actually vomit. Whew. Came kinda close at 4am last night.
My stomach has so much trouble digesting food now and man that constipation sucks. The appetite part though does have a pattern. Which could be good or bad if I can’t actually eat certain foods since my stomach has veto power.
For this past chemo session, I had the misfortune of accidentally moving the IV needle when lugging the IV rack with me to the bathroom multiple times. This resulted in the chemo not going in correctly for a minute which BURNED. I had to get restuck on my other arm and now my left arm aches. The nurse said this would last up to 3 weeks and as long as my arm didn’t change color or swell up, I’d be fine. Holy crap!
The nurses suggested a port as did my aunt who had breast cancer. Ugh. We’ll see after those PET scans in January.
I also have a weird skin thing on my stomach. About a diameter of half an inch. I think it was a rash that I scratched and now won’t heal. The bf is so worried about it, but I figure it’s just a bad scar. Will have to remember to bring it up on Thursday for the follow up visit. Man, only 3 chemo sessions down and I’m already so sick of this. At least the blood tests have lessened. AND the doctors and nurses seem very positive about how I’m reacting to the chemo in terms of not having any serious side effects and losing all the swelling. I’ll try to focus on that for now.
I see that I’m getting sparser with my writing again like the other blog, but there are days, especially like this week when I feel so lackluster and depleted of energy and motivation. Someone, (I forget who since I’m losing my memory) told me to try to at least write one line each day, even if it’s something like “I feel crappy today.”
In some ways, chemo is getting tougher. I guess the side effects are just cumulative. My hair thins more and more each day though I guess I still look fine. Shedding so much and losing clumps of hair in the shower everyday is driving me mad. It’s only a matter of time. Everyone is always so surprised so see that I still have hair and not all pale and sickly.
The nausea seems to get worse and last longer though I have yet to actually vomit. Whew. Came kinda close at 4am last night.
My stomach has so much trouble digesting food now and man that constipation sucks. The appetite part though does have a pattern. Which could be good or bad if I can’t actually eat certain foods since my stomach has veto power.
For this past chemo session, I had the misfortune of accidentally moving the IV needle when lugging the IV rack with me to the bathroom multiple times. This resulted in the chemo not going in correctly for a minute which BURNED. I had to get restuck on my other arm and now my left arm aches. The nurse said this would last up to 3 weeks and as long as my arm didn’t change color or swell up, I’d be fine. Holy crap!
The nurses suggested a port as did my aunt who had breast cancer. Ugh. We’ll see after those PET scans in January.
I also have a weird skin thing on my stomach. About a diameter of half an inch. I think it was a rash that I scratched and now won’t heal. The bf is so worried about it, but I figure it’s just a bad scar. Will have to remember to bring it up on Thursday for the follow up visit. Man, only 3 chemo sessions down and I’m already so sick of this. At least the blood tests have lessened. AND the doctors and nurses seem very positive about how I’m reacting to the chemo in terms of not having any serious side effects and losing all the swelling. I’ll try to focus on that for now.
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.
Day 69 12/17/09 Thursday
I completely unloaded at the support group today. I had been waiting all week and boy did it help.
Basically I’ve been kinda down. I think for the most part, I’ve tried to stay positive outwardly and inwardly but I’m getting worn down. The “off” week for the 2nd round of chemo wasn’t as pleasant as the first time. My stomach has been unhappy. And to top it off, I stumbled upon the clinic’s website, which was very informative but also depressing.
Apparently, stage 2B and bulky disease is considered advanced stages of Hodgkins Lymphoma. Imagine my surprise. Here I was thinking, whew, thank goodness I’m only at stage 2. God damn it all to hell.
What really pisses me off is that when I first got diagnoses, I didn’t have all those B symptoms. I was still ok. But by the time, I saw the oncologist, and got my staging, I was getting to be a hot mess and all those symptoms developed. In a matter of weeks, I went from early stages to advanced stages! ARGH!!!!
As I shared this news with the women of Helen’s Room, they allowed me to take up the bulk of the hour with my venting. “A”, our social worker of the group correctly explained to me that not only was it anger I was feeling, it was trauma. Finding out all this new information and constantly undergoing all these new things as I do chemo is traumatizing.
It also doesn’t help that I feel lonely in a different way. I have wonderful family and friends supporting me, but they can’t understand or empathize with this journey. I also spend the majority of time alone at home, now that I haven’t worked in nearly a year. The bf keeps having mini meltdowns and my dad refuses to let my mom tell her side of the family about me for fear of unnecessary worrying and misinformation. (You know, one family member tells another like the game of telephone, and next thing you know, all my relatives think I’m dying.)
Anyway, unloading all of this helped. I have no solutions for it, but at least I’m not cooping it all up inside for now.
Basically I’ve been kinda down. I think for the most part, I’ve tried to stay positive outwardly and inwardly but I’m getting worn down. The “off” week for the 2nd round of chemo wasn’t as pleasant as the first time. My stomach has been unhappy. And to top it off, I stumbled upon the clinic’s website, which was very informative but also depressing.
Apparently, stage 2B and bulky disease is considered advanced stages of Hodgkins Lymphoma. Imagine my surprise. Here I was thinking, whew, thank goodness I’m only at stage 2. God damn it all to hell.
What really pisses me off is that when I first got diagnoses, I didn’t have all those B symptoms. I was still ok. But by the time, I saw the oncologist, and got my staging, I was getting to be a hot mess and all those symptoms developed. In a matter of weeks, I went from early stages to advanced stages! ARGH!!!!
As I shared this news with the women of Helen’s Room, they allowed me to take up the bulk of the hour with my venting. “A”, our social worker of the group correctly explained to me that not only was it anger I was feeling, it was trauma. Finding out all this new information and constantly undergoing all these new things as I do chemo is traumatizing.
It also doesn’t help that I feel lonely in a different way. I have wonderful family and friends supporting me, but they can’t understand or empathize with this journey. I also spend the majority of time alone at home, now that I haven’t worked in nearly a year. The bf keeps having mini meltdowns and my dad refuses to let my mom tell her side of the family about me for fear of unnecessary worrying and misinformation. (You know, one family member tells another like the game of telephone, and next thing you know, all my relatives think I’m dying.)
Anyway, unloading all of this helped. I have no solutions for it, but at least I’m not cooping it all up inside for now.
Saturday, January 9, 2010
Day 65 12/13/09 Sunday
Got through the week with on/off nausea like last time, but my stomach still feels uneasy and a bit weak. Which is such a shame because my brain and taste buds seem to have recovered enough to crave all sorts of things. I’m still tired easily and need lots of sleep. The nurses and women in the support group tell me there’s no pattern to this – that every time will be different. Sigh.
Oh yeah, I love the support group at Helen’s Room. I’m the youngest and the only non-breast cancer person, but the women are hilarious and so supportive. I also attended the orientation at the Wellness Center LA and going to the Look Good, Feel Better program tomorrow. All these support groups and programs out there for cancer patients are phenomenal. It’s not like you WANT to be a part of this club, but since you’re in it, it’s pretty special to be a part of it with all these other patients and survivors.
Oh yeah, I love the support group at Helen’s Room. I’m the youngest and the only non-breast cancer person, but the women are hilarious and so supportive. I also attended the orientation at the Wellness Center LA and going to the Look Good, Feel Better program tomorrow. All these support groups and programs out there for cancer patients are phenomenal. It’s not like you WANT to be a part of this club, but since you’re in it, it’s pretty special to be a part of it with all these other patients and survivors.
Day 61 12/9/09 Wednesday
Everything tastes metallic, like I’m sucking on a metal spoon. My tummy feels weird and I just don’t want to move or do anything. This day, I can tell, is just gonna be a wash. Just have to wait it out…
Day 60 12/8/09 Tuesday
Slowly losing my appetite again. Not quite nauseous but more of that weird suppressed nausea feeling in my tummy. I guess it could be worse. Don’t feel like doing much even though I’ve forced myself to do some chores. Blah kinda day.
Day 59 12/7/09 Monday
Round 2 of chemo. It still took 5 hours because the Dacarbazine burns like hell if it goes faster than the speed of a 3 hour drip. Even then, the nurses had to keep heat pads on my arm to dilate the vein. Annie said this time this must have hit a bigger more tender vein. Sigh.
Bf kept me company today though I’m sure it was a little boring for him. Packed room today. I still took the longest and was the last one there. Pooh.
Bf kept me company today though I’m sure it was a little boring for him. Packed room today. I still took the longest and was the last one there. Pooh.
Day 56 12/4/09 Friday
Today I got some of the best news I’ve gotten in awhile, especially from a doctor! After telling the Dr I was getting cabin fever and a bit depressed being trapped at home so much, she told me to go out! She ordered me to see a movie this weekend, go to the mall, go out and enjoy myself!
Apparently, the weekend before chemo will be the time I’m at my best, in terms of immune system. No masks needed, just be careful with washing hands and all that good stuff. YES!!!! I’m going to see New Moon and and indulge my inner teenager.
Apparently, the weekend before chemo will be the time I’m at my best, in terms of immune system. No masks needed, just be careful with washing hands and all that good stuff. YES!!!! I’m going to see New Moon and and indulge my inner teenager.
Day 55 12/3/09 Thursday
Attended my first cancer support group today. Claudia only had a brunette wig for me and I couldn’t quite get used to the look of it on me. Or it could also be the idea of a wig is still new. She referred me to Helen’s Room, which is run by a guardian angel named Monica.
Monica runs a completely nonprofit group that provides free wigs, hats, scarves, every possible kind of head covering… She spent an hour with me and gave me so much stuff, I felt greedy. She also invited me to stay afterwards for their weekly women’s support group
Monica runs a completely nonprofit group that provides free wigs, hats, scarves, every possible kind of head covering… She spent an hour with me and gave me so much stuff, I felt greedy. She also invited me to stay afterwards for their weekly women’s support group
Day 54 12/2/09 Wednesday
Still crampy but I had made an appointment with Claudia at the American Cancer Society to look into a free wig and ask about support groups. I had been debating about joining a support group but maybe I need it more than I thought.
Claudia was great! I can’t believe how sincerely nice everyone involved with cancer support is. I feel like today was the first step into this whole world of cancer networking.
Claudia was great! I can’t believe how sincerely nice everyone involved with cancer support is. I feel like today was the first step into this whole world of cancer networking.
Day 53 12/1/09 Tuesday
Completely incapacitated today due to (of all things) horrible debilitating cramps. I was in so much pain last night that I couldn’t sleep. Tylenol is a joke.
The IVF treatment messed up my cycle and it’s as if my cramps and period came back with a vengeance of being suppressed for the last few years by the pill. I can’t wait to get back on the pill this weekend.
Can’t take ibuprofen because it’s a blood thinner, Tylenol is not strong enough, and Darvoset only seems to help a bit but make me all sweaty like I’m breaking a fever. This is going to be a looooong week if my period goes all week like it used to.
Hey to top it off, I’m extra emotional too. Whoopeeee! Can’t stop crying and I think I’m driving the bf away since emotions scare the crap out of him.
On a bright note, as I sat bawling on the couch this afternoon, Wavy IMed me just in the nick of time. AND a FedEx guy ran the doorbell with a get well gift from two of friends. Thank goodness for great friends.
The IVF treatment messed up my cycle and it’s as if my cramps and period came back with a vengeance of being suppressed for the last few years by the pill. I can’t wait to get back on the pill this weekend.
Can’t take ibuprofen because it’s a blood thinner, Tylenol is not strong enough, and Darvoset only seems to help a bit but make me all sweaty like I’m breaking a fever. This is going to be a looooong week if my period goes all week like it used to.
Hey to top it off, I’m extra emotional too. Whoopeeee! Can’t stop crying and I think I’m driving the bf away since emotions scare the crap out of him.
On a bright note, as I sat bawling on the couch this afternoon, Wavy IMed me just in the nick of time. AND a FedEx guy ran the doorbell with a get well gift from two of friends. Thank goodness for great friends.
Thursday, January 7, 2010
Day 52 11/30/09 Monday
It’s been a good day. I couldn’t sleep all night due to anxiety from the blood test this morning, but I had THE BEST phlebotomist ever who managed to calm me down by chatting about cheeseburgers, found a vein, and drew blood in 20 seconds flat. Ed. How I love thee. I told him I’m going back to him every time.
(I was completely traumatized by Wednesday’s encounter at the Santa Monica Labcorp – nearly 3 hours and five painful sticks that left my poor arms black and blue. I HATE them. I was in tears when I got home.)
After the morning nausea and anxiety, I was so relieved the rest of the day that I managed to be more productive than I have been in a long time. I actually went out to lunch and ate out with a good friend. Delicious!!! Of course, we sat outside far away from other people, but it felt good to have a normal lunch with a friend and a normal appetite while enjoying some Hawaiian food and another milkshake.
I ran errands and finally wrote thank you cards to all the wonderful techs and healthcare folks I’ve encountered along the way. I resisted napping to take care of all the little things online, like finances... I’m sure I’ll crash early tonight, but it’s been such a good day of feeling normal. Hooray for these kinds of days!
(I was completely traumatized by Wednesday’s encounter at the Santa Monica Labcorp – nearly 3 hours and five painful sticks that left my poor arms black and blue. I HATE them. I was in tears when I got home.)
After the morning nausea and anxiety, I was so relieved the rest of the day that I managed to be more productive than I have been in a long time. I actually went out to lunch and ate out with a good friend. Delicious!!! Of course, we sat outside far away from other people, but it felt good to have a normal lunch with a friend and a normal appetite while enjoying some Hawaiian food and another milkshake.
I ran errands and finally wrote thank you cards to all the wonderful techs and healthcare folks I’ve encountered along the way. I resisted napping to take care of all the little things online, like finances... I’m sure I’ll crash early tonight, but it’s been such a good day of feeling normal. Hooray for these kinds of days!
Day 51 11/29/09 Sunday
The nausea has been manageable this week. I even enjoyed Thanksgiving dinner with the family though I couldn’t gorge on all the yumminess like I usually do.
The bf and I went sofa shopping as my sofa suddenly seems too soft to support my constantly aching body. Perhaps I’m sitting too much? Who knows. The nice thing is afterwards, my appetite was in good spirits and an organic, no nitrates, no hormones, no antibiotics hot dog truck sat outside the furniture store. Fate? Then we washed it down with a mango milkshake. ☺ Because you know what? The food outline says I can have milkshakes since I should stock up on foods high in calories when I do have the appetite. Whoo hoo!
Most days, it doesn’t quite hit me that I have actual Cancer – feels more like I’ve just been sick with something bad for a long time. Maybe when my hair falls out it’ll hit me? I’ve been waiting with bated breath to see when that happens. I think I’m mentally prepared at this point but we’ll see. The weird thing will be losing my eyebrows. How do I make expressions? Odd.
The bf says he has the opposite experience. He can’t ever forget I have cancer and it’s all that ever occupies his mind. He just tries to maintain a positive outlook about it. Yikes.
I’m also beginning to feel the cabin fever. I miss going out to movies, concerts, special events, holiday parties…
I feel like Christmas will pass me by this year in a way because I can’t participate as much in the giving part. Money is tight and I can’t enjoy shopping in person.
I’m thankful the bf seems to be content with being a homebody and watching tv/movies every night. He’s just been more and more outstanding in terms of patience and care with me, even when I do have an irrational fit about the sofa we want not fitting into our tiny apartment.
The bf and I went sofa shopping as my sofa suddenly seems too soft to support my constantly aching body. Perhaps I’m sitting too much? Who knows. The nice thing is afterwards, my appetite was in good spirits and an organic, no nitrates, no hormones, no antibiotics hot dog truck sat outside the furniture store. Fate? Then we washed it down with a mango milkshake. ☺ Because you know what? The food outline says I can have milkshakes since I should stock up on foods high in calories when I do have the appetite. Whoo hoo!
Most days, it doesn’t quite hit me that I have actual Cancer – feels more like I’ve just been sick with something bad for a long time. Maybe when my hair falls out it’ll hit me? I’ve been waiting with bated breath to see when that happens. I think I’m mentally prepared at this point but we’ll see. The weird thing will be losing my eyebrows. How do I make expressions? Odd.
The bf says he has the opposite experience. He can’t ever forget I have cancer and it’s all that ever occupies his mind. He just tries to maintain a positive outlook about it. Yikes.
I’m also beginning to feel the cabin fever. I miss going out to movies, concerts, special events, holiday parties…
I feel like Christmas will pass me by this year in a way because I can’t participate as much in the giving part. Money is tight and I can’t enjoy shopping in person.
I’m thankful the bf seems to be content with being a homebody and watching tv/movies every night. He’s just been more and more outstanding in terms of patience and care with me, even when I do have an irrational fit about the sofa we want not fitting into our tiny apartment.
Day 50, 11/28/09 Saturday
I finally had a moment of normalcy this afternoon when I met up with a friend for coffee. It was like old times and cancer talk didn’t necessarily take up the whole conversation. It was just part of the conversation as it’s part of my life. I don’t know how often I’ll be able to go out and just have coffee at a coffeehouse with friends later on, but I cherish this moment for now.
On a separate tangent, I notice that coffee makes my lymph nodes ache, probably because it’s dehydrating. Luckily I don’t crave coffee too much anymore. I drank it more for the social aspect and because, ahem, it helps with the constipation. The nurses tell me that those darn chemo drugs just completely slow your gut down so whatever helps! Choose your evil.
On a separate tangent, I notice that coffee makes my lymph nodes ache, probably because it’s dehydrating. Luckily I don’t crave coffee too much anymore. I drank it more for the social aspect and because, ahem, it helps with the constipation. The nurses tell me that those darn chemo drugs just completely slow your gut down so whatever helps! Choose your evil.
Day 46 11/24/09 Tuesday
1st day after chemo. So far so good. My lymph nodes immediately stopped aching. What a miracle! No signs of nausea so far…
Scratch that. It’s 5pm. I woke up from a nap because the anti-nausea pills make me all drowsy and now I’m nauseous. Took another pill and waiting for it to kick in. Sigh. Guess I couldn’t go scott-free for long. Drowsy and nauseous. Bleh. And trying to keep fluids going in so as not to go into toxic shock for tumorlisis or whatever they call it as the chemo flushes all this lymph node crap and dead cancer cells out of my system. I can barely keep my eyes open. Sheesh. Now I’m not sure I want to eat either. Except that I have enough food in the fridge from mom and my cousin to last 2 weeks.
Scratch that. It’s 5pm. I woke up from a nap because the anti-nausea pills make me all drowsy and now I’m nauseous. Took another pill and waiting for it to kick in. Sigh. Guess I couldn’t go scott-free for long. Drowsy and nauseous. Bleh. And trying to keep fluids going in so as not to go into toxic shock for tumorlisis or whatever they call it as the chemo flushes all this lymph node crap and dead cancer cells out of my system. I can barely keep my eyes open. Sheesh. Now I’m not sure I want to eat either. Except that I have enough food in the fridge from mom and my cousin to last 2 weeks.
Day 45 11/23/09 Monday
1st day of chemo. It went better than I expected. Even the IV part was too bad. Was just super groggy from the Benadryl they put in the IV. Thank goodness I had Sarah there to keep me company. She’s so low key and I didn’t have to worry too much about her being bored. I think the bf would have been bored out of his mind and restless for 5 hours. Right now I just feel so waterlogged but trying really hard to keep drinking as much as possible like they advised. So far so good with the nausea… crossing my fingers that it’ll stay that way. I even took a preemptive pill just in case.
I have tons of texts and emails from friends and I feel so loved.
I have tons of texts and emails from friends and I feel so loved.
Wednesday, January 6, 2010
Day 43 – 11/21/09 Saturday
Those crazy lymph nodes are getting out of hand. They’re starting to swell up on my throat, under my jaw and just continue to balloon up around my neck, making breathing, swallowing and all around mobility of my head kind of difficult. Yeah I’m ready to shrink these suckers down on Monday.
Last night was awful. The nodes on my neck were actually in pain. I think I might have been dehydrated from the coffee and tea since I have read that alcohol makes them ache. I wonder what happens to people who just don’t get this treated. Do they just swell up until they die? It’s so uncomfortable!
On a plus note, I’m no longer constipated from all those damn hormones and now feel like I could conquer the world. Well maybe.
Last night was awful. The nodes on my neck were actually in pain. I think I might have been dehydrated from the coffee and tea since I have read that alcohol makes them ache. I wonder what happens to people who just don’t get this treated. Do they just swell up until they die? It’s so uncomfortable!
On a plus note, I’m no longer constipated from all those damn hormones and now feel like I could conquer the world. Well maybe.
Day 42 – 11/20/09 Friday
The bf and I are now the proud owners? Parents? Of half a dozen frozen embryos. Wheeeeee!!!!
Ugh, still painfully constipated. Still coughing up a lung.
Ugh, still painfully constipated. Still coughing up a lung.
Day 41 – 11/19/09 Thursday
Bwak Bwak! Egg harvesting done! I feel so much better now that I’m off all those hormones. I mean I still feel run down from the usual lymphoma symptoms but I feel a good 80% better. Well, except that I’m super constipated thanks to those drugs. And slightly crampy and lightheaded.
Day 38 – 11/16/09 Monday
Stage 2B!!! Thank god it didn’t spread. Yes, radiation on the chest will probably not be fun either, but at least no bone marrow issues. Surgery is on Thursday and chemo is on Monday. It’s finally real. And I’m still mainly just scared by the damn needles. And stressed by the bf’s fragile state of mind and health.
I ache so much. But at least the anti-nausea medicine is doing its job and I’m keeping down food. I’m so sick of feeling this way and I can see how this could mentally wear me down eventually. I need to know that it’s going to get better but I don’t think it will. I think some things might be better (no more stupid swollen lymph nodes) but I can’t even imagine what I might end up facing. I don’t want to use the bf’s downer scenario because I don’t think it will be like that. What I should do is talk to other patients and join a support group but I’m too run down.
I ache so much. But at least the anti-nausea medicine is doing its job and I’m keeping down food. I’m so sick of feeling this way and I can see how this could mentally wear me down eventually. I need to know that it’s going to get better but I don’t think it will. I think some things might be better (no more stupid swollen lymph nodes) but I can’t even imagine what I might end up facing. I don’t want to use the bf’s downer scenario because I don’t think it will be like that. What I should do is talk to other patients and join a support group but I’m too run down.
Day 35 – 11/13/09 Friday
I’m falling behind with these journal entries. It’s been a rough week. Not only are the fevers and chills getting worse from the cancer, but now I have nausea and cramps from the hormones. This whole IVF treatment started out ok, but with each shot, every night, I feel worse and worse. Probably because I’m being pumped so full of estrogen, the doctor told me today that I’m equivalent to a pregnant lady. That explains the loss of appetite and throwing up of last night’s dinner. I sipped Gatorade and ginger ale all day, along with munching on Hawaiian bread. When I finally decided to have some dinner of chicken pho, it felt so good to eat it… now I feel slightly nauseous again. Sigh. My digestive system is completely out of whack.
I’ll be so happy when then this IVF treatment is over. Of course that means the beginning of chemo, which is beginning to really dawn on me. I’m slightly freaked out by it now that’s nearing. I was looking forward to it so I could start getting better, but I know it won’t be that easy.
What I am thankful for lately are my wonderful friends who have brought me food, helped me to get food, and just kept me company at home, especially since the bf has been working late all week. I thought I would really need them when treatment started, but I can’t believe how run down I’ve already become. Getting up and moving around is an effort. It is so frustrating to feel so crappy all the time.
I’ll be so happy when then this IVF treatment is over. Of course that means the beginning of chemo, which is beginning to really dawn on me. I’m slightly freaked out by it now that’s nearing. I was looking forward to it so I could start getting better, but I know it won’t be that easy.
What I am thankful for lately are my wonderful friends who have brought me food, helped me to get food, and just kept me company at home, especially since the bf has been working late all week. I thought I would really need them when treatment started, but I can’t believe how run down I’ve already become. Getting up and moving around is an effort. It is so frustrating to feel so crappy all the time.
Tuesday, January 5, 2010
Day 27 – 11/5/09 Thursday
This morning, I had a sonogram of my heart taken and PET and CT scans of my entire upper body. It was a long morning and not the most enjoyable thing, but I’m crossing my fingers that nothing is lighting up where it’s not supposed to. I’m really hoping the cancer hasn’t spread but sometimes I worry since I feel so crappy most of the time. I feel myself deteriorating each day – the sweating and fevers are getting worse, getting more fatigued, and everything aches.
I know chemo will start in possibly 2 weeks and we just have to get through this egg harvesting thing, but 2 weeks of feeling this crappy or getting worse than I already am, is a bit frightening.
I can’t even remember the last time I felt good anymore. Everything aches. My back aches from the biopsy, my neck aches from all the swollen lymph nodes, and my head just randomly aches from time to time.
I was thinking today how difficult this must be for the bf. Being the caretaker for someone who is sick is much worse because you’re kind of helpless to do anything and have to cater to the sick person. I was thinking if the roles were reversed, I’d be so stressed and miserable.
I know chemo will start in possibly 2 weeks and we just have to get through this egg harvesting thing, but 2 weeks of feeling this crappy or getting worse than I already am, is a bit frightening.
I can’t even remember the last time I felt good anymore. Everything aches. My back aches from the biopsy, my neck aches from all the swollen lymph nodes, and my head just randomly aches from time to time.
I was thinking today how difficult this must be for the bf. Being the caretaker for someone who is sick is much worse because you’re kind of helpless to do anything and have to cater to the sick person. I was thinking if the roles were reversed, I’d be so stressed and miserable.
Day 26 – 11/4/09 Wednesday
Nights and mornings are getting so hard for me. I get extremely fatigued, but then I can’t sleep well thanks to those f’in night sweats. Except they’re not just night sweats. They’re afternoon, morning, and whenever I try to sleep sweats.
I also chopped off my hair today and I actually really like it. Having that weight off of me will help me not exhaust myself blow drying and brushing my damn mane. AND hopefully it will help with the massive sweating.
I’m almost looking forward to chemo now as I’m so sick of sweating and being so achy from these ginormously swollen lymph nodes. It’s like popcorn erupted around my neck.
I also chopped off my hair today and I actually really like it. Having that weight off of me will help me not exhaust myself blow drying and brushing my damn mane. AND hopefully it will help with the massive sweating.
I’m almost looking forward to chemo now as I’m so sick of sweating and being so achy from these ginormously swollen lymph nodes. It’s like popcorn erupted around my neck.
Day 24 – 11/2/09 Monday
Today I got a bone marrow biopsy, which if possible, no one should get twice in their life. It wasn’t the sharp pain I was expecting, but it’s a different kind of uncomfortable down to the core type of pain. Let’s just say I could feel it through my leg when she went through the bone marrow.
I’m still loving the oncologist, who seems more like a stylish fashion designer than a doctor. She has a great bedside manner and was very chatty to distract me from the biopsy. She also wants me to start chemo as soon as possible, as soon as the fertility doctor clears me. This means chemo is happening in possibly less than 3 weeks, right before Thanksgiving. NO giant feast for me!
I’m still loving the oncologist, who seems more like a stylish fashion designer than a doctor. She has a great bedside manner and was very chatty to distract me from the biopsy. She also wants me to start chemo as soon as possible, as soon as the fertility doctor clears me. This means chemo is happening in possibly less than 3 weeks, right before Thanksgiving. NO giant feast for me!
Day 22 – 10/31/09 Saturday
We told my parents today. It wasn’t how I planned but it probably turned out better than I thought. I ended up telling my dad first during the afternoon. He looked so sad but took it in and wanted to read up on it as much as possible.
The bf and I ended up meeting our friends for lunch and some shopping and car racing for the afternoon. When we got home, my dad whispered to me that he hadn’t said anything to mom. He also advised holding off till after dinner so that she wouldn’t lose her appetite. When we finally told her after dinner, she also took it much better than I thought she would. No freaking out, no getting angry… She also just wanted to know as much as she could.
After the initial questions, my parents just kept telling stories and chatting with the bf and me. I think it made them feel better to just talk about other things. The bf has just been a champ throughout the whole process. So patient and accommodating… I really lucked out.
The bf and I ended up meeting our friends for lunch and some shopping and car racing for the afternoon. When we got home, my dad whispered to me that he hadn’t said anything to mom. He also advised holding off till after dinner so that she wouldn’t lose her appetite. When we finally told her after dinner, she also took it much better than I thought she would. No freaking out, no getting angry… She also just wanted to know as much as she could.
After the initial questions, my parents just kept telling stories and chatting with the bf and me. I think it made them feel better to just talk about other things. The bf has just been a champ throughout the whole process. So patient and accommodating… I really lucked out.
Day 21 – 10/30/09 Friday
The IVF coordinator called at the crack of dawn to go over the timeline and treatments. I was barely coherent but managed to write everything down and become more overwhelmed about the additional costs and how often I’ll have to go up to HRC to get checked on. My car is going to increase in mileage just from cancer!
Anyway, the bf and I headed up there at noon for our blood tests (he also needed to provide an ahem…semen analysis) and to go over the thirty page consent form. Everything was going well until we had a meltdown in the car over intimacy issues. I’m sure this is a common thing, but he’s worried about making things worse or hurting me in my state. Obviously, that’s not our only issues but in my state of feeling so ugly and unattractive, and him telling me that the excitement is not there anymore, I couldn’t stop crying. The main problem is still with his own physical issues, but everything combined together, along with knowing that soon I won’t even want to have sex is making me filled with despair. It’s been one time in the past two months. And I don’t see that improving any time soon. ☹
Anyway, the bf and I headed up there at noon for our blood tests (he also needed to provide an ahem…semen analysis) and to go over the thirty page consent form. Everything was going well until we had a meltdown in the car over intimacy issues. I’m sure this is a common thing, but he’s worried about making things worse or hurting me in my state. Obviously, that’s not our only issues but in my state of feeling so ugly and unattractive, and him telling me that the excitement is not there anymore, I couldn’t stop crying. The main problem is still with his own physical issues, but everything combined together, along with knowing that soon I won’t even want to have sex is making me filled with despair. It’s been one time in the past two months. And I don’t see that improving any time soon. ☹
Friday, January 1, 2010
Day 18 – 10/27/09 Tuesday
Today we met with the fertility doctor. Can we say SOOOOO SURREAL? The bf and I have barely been together two years, not married yet and now we are planning our freezing our future children.
Day 17 – 10/26/09 Monday
Met with the oncologist today. She seems so young but super knowledgeable. It was an overwhelming amount of information to take in. The good news is I won’t have to be sequestered away to a sterile environment and move home. The bad news is that it’s going to last a LONG time. Six to eight months. I was thinking three to four. The hair loss will be a certainty. I won’t be able to eat fresh fruit and veggies. Need to avoid crowded places and sick people. Mainly the bf needs to take care of himself and not get sick.
I started telling more people tonight. First it was my brother, who responded with a very loud “WHAT?!!!!!” and then made me well up with tears with how concerned and tender he was. Since he was leaving on a business trip for the week, he offered to be on speakerphone when I told our parents this weekend.
I started telling more people tonight. First it was my brother, who responded with a very loud “WHAT?!!!!!” and then made me well up with tears with how concerned and tender he was. Since he was leaving on a business trip for the week, he offered to be on speakerphone when I told our parents this weekend.
Day 16 – 10/25/09 Sunday
Heading back home today. I don’t want to get back too late for fear that my parents will see how ravaged I get late at night in the car after a few hours. After a week of nature, fresh air, little people, Vegas and its smoke and people was a horrible assault on the senses. (Not to mention scaring us hypochondriacs about germs and colds!) We just holed up in the room the rest of the night and morning, ordering room service instead of going downstairs. Ugh.
Day 15 – 10/24/09 Saturday
We’re both a little sad since the trip is coming to an end and all the fun national park stuff is behind us. Back to facing the harsh reality of diagnosis and treatment on Monday.
The mood is also sad because after visiting Bf’s childhood friend and her family, it made him want a family more. It’s not that it’s impossible for us, but it’s definitely going to be harder, even before having to face toxic chemicals ravaging my body.
BF is also worried about the H1N1 outbreak and how it’s the worst time for my immunity system to be compromised. It makes me wonder if I should move home since it will be farther away from people, more space and definitely cleaner and more sterile, not to mention 24/7 mom care. However it means living at home, not getting to see BF and just plain stuck out there. Sigh. I guess we should hold off on any decisions until Monday.
The mood is also sad because after visiting Bf’s childhood friend and her family, it made him want a family more. It’s not that it’s impossible for us, but it’s definitely going to be harder, even before having to face toxic chemicals ravaging my body.
BF is also worried about the H1N1 outbreak and how it’s the worst time for my immunity system to be compromised. It makes me wonder if I should move home since it will be farther away from people, more space and definitely cleaner and more sterile, not to mention 24/7 mom care. However it means living at home, not getting to see BF and just plain stuck out there. Sigh. I guess we should hold off on any decisions until Monday.
Day 14 – 10/23/09 Friday
Oh stupid lymph nodes why do you ache so much so? I did most of the driving from Yellowstone to Salt Lake City since BF drove all day for over 6 hours inside the park yesterday. However that exhausted me so much I had to pass out at the hotel. Well, actually the BF insisted I take a nap while he got me some food and took care of the laundry. I don’t know why I put up an argument… I think it’s hard for me to realize that I can’t take care of everything anymore and that that’s the way it’s gonna be for a little while.
Day 13 - 10/22/09 Thursday
We spent nearly 12 hours in the park and it was tough today. Not only because I got so easily winded from walking around the sites but because it was so freakin cold. At one point, I was so thoroughly chilled I HAD to have a hot beverage before I shut down. I know I’m worrying the boyfriend since I’m so easily fatigued and have extreme temperature changes myself.
The lymph nodes under my arm are the size of small kumquats. It’s disgustingly frightening and really uncomfortably tender. I can barely put my arms down by my side. I feel like a freak.
I had a dream last night that I was at the hospital and the technician told me I was at stage 3. When I told him the chronology of my illness, he started getting upset and tearing up. Then the doctor came over and told me that actually I was at stage 4 and that it had spread all through a few of my organs. I was so scared, sad and angry.
This likely stemmed from the discussion I had with the bf right before I passed out to sleep. (I’ve been so exhausted by this trip and in general.) I asked him point blank if it felt like I had been deteriorating the past couple of weeks physically, even before the trip or the diagnosis. And he said yes. It scared him and he tried not to think about it too much.
I felt like the deterioration coincided with the diagnosis. Maybe it’s psychological? Maybe it’s the tapering down of prednisone? Maybe it’s the exhaustion of being in different climates and extreme weathers? Or maybe it’s the exhaustion of all the driving and hiking around? Bf said no, you have slowly been getting worse.
The lymph nodes under my arm are the size of small kumquats. It’s disgustingly frightening and really uncomfortably tender. I can barely put my arms down by my side. I feel like a freak.
I had a dream last night that I was at the hospital and the technician told me I was at stage 3. When I told him the chronology of my illness, he started getting upset and tearing up. Then the doctor came over and told me that actually I was at stage 4 and that it had spread all through a few of my organs. I was so scared, sad and angry.
This likely stemmed from the discussion I had with the bf right before I passed out to sleep. (I’ve been so exhausted by this trip and in general.) I asked him point blank if it felt like I had been deteriorating the past couple of weeks physically, even before the trip or the diagnosis. And he said yes. It scared him and he tried not to think about it too much.
I felt like the deterioration coincided with the diagnosis. Maybe it’s psychological? Maybe it’s the tapering down of prednisone? Maybe it’s the exhaustion of being in different climates and extreme weathers? Or maybe it’s the exhaustion of all the driving and hiking around? Bf said no, you have slowly been getting worse.
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