The oncologist called today and asked if I could come in Friday. I called back and told them I was in Yellowstone and had decided to take a little vacation before all the craziness started. They were able to squeeze me in next Monday instead of my original appointment Thursday. Which is great! But then I was thinking hmm, is that good or bad? The receptionist assured me it was because they had a cancellation and the doctor wanted to see me earlier.
The bf brought up shaving my head again. But now we (he) start joking about how I’m going to look like a man and I’m going to be crying every time I lose hair. He also mentioned that I look like a different person right now because of the shape of my face. Sigh.
ToughMom IMed me to check in on our trip and also told me that she and her husband had researched Hodgkins on wikipedia. She mentioned that 1) it was the most curable cancer, 2) the chemo treatment they use is the gentlest one and 3) which means there is a chance I won’t lose my hair or not be able to have kids. All on the bright side though I’m fully prepared for both. Guess we’ll find out next Monday!
Sunday, December 27, 2009
Day 11 – 10/20/09 Tuesday
I had to face my physical limitations today and say no to hiking down to the bottom of the Bryce Canyon Wall Street section. Straight down for 1.3 miles. Old people were hiking down and panting back up the 45 degree inclines. I made it ¼ way down and waited for the boyfriend. We agreed that though going down the canyon was a breeze, coming up was going to be tough for me.
I was looking in the mirror tonight and realized that I’m becoming a swollen deformed version of me. The nodes around the right side of my neck are so swollen, the distinction between face, chin and neck are gone. Taking pictures is a little tough, but luckily it’s cold and I can bundle up with scarves. Luckily the bf has been very encouraging and sweet even if we do have our silly bickerings about road trip logistics.
I was looking in the mirror tonight and realized that I’m becoming a swollen deformed version of me. The nodes around the right side of my neck are so swollen, the distinction between face, chin and neck are gone. Taking pictures is a little tough, but luckily it’s cold and I can bundle up with scarves. Luckily the bf has been very encouraging and sweet even if we do have our silly bickerings about road trip logistics.
Day 10 – 10/19/09 Monday
It really sucks to feel my body slowly deteriorating in a way. I get winded just walking around and everything tires me out. I can’t tell if it’s because of my swollen lymph nodes causing my body to ache that is wearing me out or if I’m just out of shape because I haven’t been able to exercise.
The bf loves the Grand Canyon so much, we decide to come back again and spend more time here as soon as I’m done with treatment and feel well enough to travel. It’ll be the treat to look forward to.
The bf loves the Grand Canyon so much, we decide to come back again and spend more time here as soon as I’m done with treatment and feel well enough to travel. It’ll be the treat to look forward to.
Day 9 – 10/18/09 Sunday
The road trip gets off to a very shaky start. The bf and I bicker over the fact that I got up too late, we got on the road too late (8am instead of 6:30-7) and that I freak out over his incorrect iPhone GPS directions to the motel. By the time we arrive, we’re barely talking even though we’ve managed to get here by 3:45.
I’m cranky and demand an apology from him berating me all morning. He refuses. After a little bit of time, he concedes and it comes out that he just wants everything to be perfect. He wants to build tons of happy memories on this trip before the onslaught of bad happens when we get home. He wants to me to be happy and excited about this trip because it’s the last one we can take for awhile. All kinda sweet yet morbidly frustrating.
First of all, I tell him, even at my healthiest, I will never be happy and excited about waking up at the crack of dawn for anything. Everyone who knows me knows this and it’s not laziness. My body needs a certain amount of sleep so if you want me to get up at 6, I need to sleep at 10. I need 8 hrs, healthy of not.
Secondly, I told him we are traveling next year. I don’t see why not. I should be done with treatment by March and hell if we aren’t going to Hawaii to elope or Italy for a honeymoon.
I’m cranky and demand an apology from him berating me all morning. He refuses. After a little bit of time, he concedes and it comes out that he just wants everything to be perfect. He wants to build tons of happy memories on this trip before the onslaught of bad happens when we get home. He wants to me to be happy and excited about this trip because it’s the last one we can take for awhile. All kinda sweet yet morbidly frustrating.
First of all, I tell him, even at my healthiest, I will never be happy and excited about waking up at the crack of dawn for anything. Everyone who knows me knows this and it’s not laziness. My body needs a certain amount of sleep so if you want me to get up at 6, I need to sleep at 10. I need 8 hrs, healthy of not.
Secondly, I told him we are traveling next year. I don’t see why not. I should be done with treatment by March and hell if we aren’t going to Hawaii to elope or Italy for a honeymoon.
Day 8 – 10/17/09 Saturday
So much to do before leaving tomorrow. I feel like telling my two friends Wavy and ToughMom before I leave but it’s Saturday and I’m sure they’re out and about having fun with their friends and family. Bf is still worried if this trip is a good idea with me being so easily tired and achy but what the hell are we going to do sitting around for 2 weeks waiting around right?
I ended up telling ToughMom late at night and she took it as well as Homey. Sympathetic but encouraging and helpful. The funniest thing she said was that of all the people, I really didn’t deserve it. “No one deserves this,” I replied. “I can think of a couple of people…” she retorted.
I ended up telling ToughMom late at night and she took it as well as Homey. Sympathetic but encouraging and helpful. The funniest thing she said was that of all the people, I really didn’t deserve it. “No one deserves this,” I replied. “I can think of a couple of people…” she retorted.
Day 7 – 10/16/09 Friday
The doctor’s office called with some good news and said that I could take my slides to the UCLA pathology labs instead of USC. YES! Closer and a better hospital!
We were supposed to leave for Yellowstone tomorrow but at the rate we’re going with the planning, it’s looking like Sunday. We ended up watching the movie
The bf and I also both went to the chiropractor today, where I told her about my diagnosis. Again she was very positive about it just like everyone else. Not much other C word related issues to deal with today except that I do get easily tired and achy, especially at night after we watched a movie with friends. It probably didn’t help that I hadn’t slept well or enough the last nights and I could feel my throat starting to hurt. Yikes. Last thing I need is a cold too!
The bf got upset with me for not taking better care of myself and insisted that I shower and get to bed right away. Wouldn’t let me forage for food for him or dawdle. Is it going to be like this from now on? I told him I’m not broken, just a little tired. But I see him getting increasingly worried about every little thing I have.
We were supposed to leave for Yellowstone tomorrow but at the rate we’re going with the planning, it’s looking like Sunday. We ended up watching the movie
The bf and I also both went to the chiropractor today, where I told her about my diagnosis. Again she was very positive about it just like everyone else. Not much other C word related issues to deal with today except that I do get easily tired and achy, especially at night after we watched a movie with friends. It probably didn’t help that I hadn’t slept well or enough the last nights and I could feel my throat starting to hurt. Yikes. Last thing I need is a cold too!
The bf got upset with me for not taking better care of myself and insisted that I shower and get to bed right away. Wouldn’t let me forage for food for him or dawdle. Is it going to be like this from now on? I told him I’m not broken, just a little tired. But I see him getting increasingly worried about every little thing I have.
Day 6 – 10/15/09 Thursday
A bit of an emotionally overwrought day. I spent half the day with Dr. Roommate at UCLA surgical waiting room and things were as normal as could be. There were no tears, just us casually discussing my case, how her husband handled telling people about his tumor(badly), us walking down to her Westwood with her FIL to get a bite to eat… I’m happy that we got to spend the day together even if we didn’t get as much privacy from her in-laws as we would have liked.
The neurosurgeon who handled her husband’s surgery was amazingly warm, friendly, patient and young. So atypical of everything I’ve heard and seen on TV about surgeons being clinical and cold. Dude, I want her as a doctor. But maybe not so much for neurosurgery.
At home, the bf had cleaned the whole place and it was amazing. Aaaahhhh…
Dr. Roommate had advised that I should tell a couple of close friends I trusted to ease the burden. And she also guessed that it would be Stage 2A since it’s spread to my armpit lymph nodes and didn’t have too many symptoms. The worst part is that she did confirm my fears that I probably wouldn’t be able to have kids normally after chemo and that I’d have to harvest my eggs if in vitro was an option I wanted to keep open later. Man that is heavy shit to deal with all at once. And more invasive procedures. Ugh.
I revealed the news to my second friend Homey. I was driving her to the airport and decided that the alone time would work. She didn’t seem too shocked and said she noticed that I had seemed off on Saturday. She handled it perfectly, not all emotional at all, and offered to help for anything except cooking. She also said good luck keeping our friend Hungry Monster away once she finds out since she’s so devoted to taking care of people.
Unfortunately, the bf and I had a bit of a breakdown at night before going to bed. I’m sure this is common with other patients, but he’s afraid of hurting me more with any physical intimacy. He’s can’t see me as a sexual object right now though I am the “love of his life.” It’s incredibly frustrating because even when we’re both healthy, the frequency of intimacy has always been an issue. With him working long hours for weeks until beginning of October and me being tired and achy, this is the longest stretch we’ve ever gone. Now, with the C word looming over our heads like a giant unsexy bat, it’s even worse.
All I can think of is, dude I’m still fine right now and the drive is there, but soon it won’t and it’s going to be a long stretch where either I won’t be up for it, or he’ll be even more mentally and emotionally distraught to try anything. I could only weep at the frustration and unfairness of it all. It’s beyond my control if he’s not feeling it. I know he loves me and all he wants is for me to get better. That is his priority. He’s plentiful with the hugs, kisses, declarations of love and any other woman out there would be overjoyed with having just that. He doesn’t mind if we can’t have kids and said we could adopt. I’m appreciative and love him dearly but in the meantime, I have to live like a nun until he finds that passion again. Or I could dress like a ho everyday and prance about until that works.
The neurosurgeon who handled her husband’s surgery was amazingly warm, friendly, patient and young. So atypical of everything I’ve heard and seen on TV about surgeons being clinical and cold. Dude, I want her as a doctor. But maybe not so much for neurosurgery.
At home, the bf had cleaned the whole place and it was amazing. Aaaahhhh…
Dr. Roommate had advised that I should tell a couple of close friends I trusted to ease the burden. And she also guessed that it would be Stage 2A since it’s spread to my armpit lymph nodes and didn’t have too many symptoms. The worst part is that she did confirm my fears that I probably wouldn’t be able to have kids normally after chemo and that I’d have to harvest my eggs if in vitro was an option I wanted to keep open later. Man that is heavy shit to deal with all at once. And more invasive procedures. Ugh.
I revealed the news to my second friend Homey. I was driving her to the airport and decided that the alone time would work. She didn’t seem too shocked and said she noticed that I had seemed off on Saturday. She handled it perfectly, not all emotional at all, and offered to help for anything except cooking. She also said good luck keeping our friend Hungry Monster away once she finds out since she’s so devoted to taking care of people.
Unfortunately, the bf and I had a bit of a breakdown at night before going to bed. I’m sure this is common with other patients, but he’s afraid of hurting me more with any physical intimacy. He’s can’t see me as a sexual object right now though I am the “love of his life.” It’s incredibly frustrating because even when we’re both healthy, the frequency of intimacy has always been an issue. With him working long hours for weeks until beginning of October and me being tired and achy, this is the longest stretch we’ve ever gone. Now, with the C word looming over our heads like a giant unsexy bat, it’s even worse.
All I can think of is, dude I’m still fine right now and the drive is there, but soon it won’t and it’s going to be a long stretch where either I won’t be up for it, or he’ll be even more mentally and emotionally distraught to try anything. I could only weep at the frustration and unfairness of it all. It’s beyond my control if he’s not feeling it. I know he loves me and all he wants is for me to get better. That is his priority. He’s plentiful with the hugs, kisses, declarations of love and any other woman out there would be overjoyed with having just that. He doesn’t mind if we can’t have kids and said we could adopt. I’m appreciative and love him dearly but in the meantime, I have to live like a nun until he finds that passion again. Or I could dress like a ho everyday and prance about until that works.
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