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!
Showing posts with label Support. Show all posts
Showing posts with label Support. Show all posts
Friday, March 19, 2010
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.
Saturday, March 6, 2010
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!”
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 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.
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.
Wednesday, January 27, 2010
Day 103 1/22/10 Friday
In counseling today, A brought up the C word and how it’s affected the bf and me. It allowed the bf to open up about his father in a way I hadn’t heard before. I started tearing up at his explanations of awkwardness with his dying father toward the end. It also showed me that in a way, I’m bringing up this grieving process in him that he never dealt with. It’s all so sad.
On a good note, counseling between us is still going really well in terms of no actual tears or hurt feelings shed yet! It’s still early, but I guess I was expecting some kind of battlefield at a certain point.
The indigestion and nausea still linger per usual but I’m looking forward to possibly going out for tea with a friend, after being a shut-in all week.
On a good note, counseling between us is still going really well in terms of no actual tears or hurt feelings shed yet! It’s still early, but I guess I was expecting some kind of battlefield at a certain point.
The indigestion and nausea still linger per usual but I’m looking forward to possibly going out for tea with a friend, after being a shut-in all week.
Day 102 1/21/10 Thursday
Everything still tastes disgusting and I still don’t feel too great. Thank you constipation and nausea. I haven’t left the house since Monday’s chemo session but will attempt to go to the support group. It’s funny how comfortable I’ve gotten in discussing how coffee will help my digestion and constipation or how when I sneeze hair falls off my head… with just about anyone who will listen. It’s like I’ve let go my inhibitions on certain topics or maybe I don’t care as much if I make other people uncomfortable?
At the support group last week, one lady said she didn’t want to tell anyone at all about her diagnosis while one of my favorite gals, M, said she “told anyone who had ears.” I was probably somewhere in the middle though closer to M. Might as well get it out there instead of hiding it right?
I also noticed that I’m getting more daring with the eating again. Like sushi (cooked stuff of course!) and sometimes seared stuff on my good weeks. Technically I only need to be careful when my white blood cell count is low, but it’s never been an issue yet.
While everyone was extremely happy for me about the chemo update, the bf seemed cautiously happy and wary. In fact, he felt that more than ever, we should be careful about me getting sick or in contact with germs so as to not derail the treatment schedule in any way. I guess I need someone like that looking out for me, but I hope this means he feels better overall about the severity of my condition.
At the support group last week, one lady said she didn’t want to tell anyone at all about her diagnosis while one of my favorite gals, M, said she “told anyone who had ears.” I was probably somewhere in the middle though closer to M. Might as well get it out there instead of hiding it right?
I also noticed that I’m getting more daring with the eating again. Like sushi (cooked stuff of course!) and sometimes seared stuff on my good weeks. Technically I only need to be careful when my white blood cell count is low, but it’s never been an issue yet.
While everyone was extremely happy for me about the chemo update, the bf seemed cautiously happy and wary. In fact, he felt that more than ever, we should be careful about me getting sick or in contact with germs so as to not derail the treatment schedule in any way. I guess I need someone like that looking out for me, but I hope this means he feels better overall about the severity of my condition.
Friday, January 22, 2010
Day 96 1/15/10 Friday
What an eventful day! First the bf and I FINALLY started counseling together. The original purpose was to help him with the caregiver support type grief counseling. But now I think it’ll also help us with all of our stupid little problems and become more of a couples counseling too.
After the counseling, I trekked back out to Pasadena again for the doctor’s visit and the results of my PET scan. I got the BEST NEWS EVER! Apparently most of the lymph nodes have shrunk back down to normal and the metabolic rate of the cancer is near negative! That means, she’s reducing the amount of chemo to 4 more sessions. Then a month of radiation. I nearly started crying at the office when she told me. Instead of 4-6 more months of chemo, it’s only two!!!
Of course there will be scans and blood tests every 3 months for the next three to five years or so, but I’m half way done! I’m almost in shock that I might not get to be taken care of by these wonderful nurses so soon.
After the counseling, I trekked back out to Pasadena again for the doctor’s visit and the results of my PET scan. I got the BEST NEWS EVER! Apparently most of the lymph nodes have shrunk back down to normal and the metabolic rate of the cancer is near negative! That means, she’s reducing the amount of chemo to 4 more sessions. Then a month of radiation. I nearly started crying at the office when she told me. Instead of 4-6 more months of chemo, it’s only two!!!
Of course there will be scans and blood tests every 3 months for the next three to five years or so, but I’m half way done! I’m almost in shock that I might not get to be taken care of by these wonderful nurses so soon.
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 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 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 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.
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