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.
Saturday, December 26, 2009
Day 5 – 10/14/09 Wednesday
Crazy morning. The receptionist from the PCP’s office called me to say that an appointment with the oncologist in 2 weeks is PERFECTLY FINE. Really?!! What if this shit spreads? I mean REALLY?! We don’t even know what F-ing stage this is yet! But she insisted that if the doctor had thought it was urgent she would have made the call to squeeze me in. I GUESS I’ll trust them on this. Sometimes I wonder if I need to be more of an asshole to get what I want. Probably everyone would say yes.
In one of the stupidest ways possible, I leaked the info to my first friend - my college roommate who fortunately enough is a doctor. Somehow while I had put her on hold to take the call from the dr’s office, my fat ole face managed to mash the right combination of buttons on my Iphone to conference the calls together and even dial a random person. Luckily I managed to hang up on the random person before it got through. Seriously, I don’t even know how to conference people together on purpose.
Anyway, Dr. Roommate heard the whole exchange between the unhelpful receptionist and me. She said she was going to ask me point blank if it was lymphoma or infectious in nature anyway as soon as I mentioned lymph nodes. Guess you can’t be too specific with medically savvy folks. I’m relieved to get it off my chest to one person, even if I hadn’t planned on telling her first. To top it off, her husband is having brain surgery tomorrow to remove a tumor!! She would have been one of the last people I wanted to burden my news on – she and all the friends who just had babies. But in a way, now we have our bad news together while everyone is sharing good news.
I started crying on the way home from lunch about it. We’re only 34! We’re young. Why us? Why are we like some crazy soap opera? One has a brain tumor and the other has cancer? Seriously when did life start imitating Grey’s Anatomy?
Well, I am looking forward to using this as an excuse to go on our Yellowstone trip though I know I’m not going to do any hard core hiking and activities. And I am looking forward to keeping Dr. Roommate company tomorrow at UCLA while her husband undergoes surgery. I have a feeling I might have a good cry or two.
In one of the stupidest ways possible, I leaked the info to my first friend - my college roommate who fortunately enough is a doctor. Somehow while I had put her on hold to take the call from the dr’s office, my fat ole face managed to mash the right combination of buttons on my Iphone to conference the calls together and even dial a random person. Luckily I managed to hang up on the random person before it got through. Seriously, I don’t even know how to conference people together on purpose.
Anyway, Dr. Roommate heard the whole exchange between the unhelpful receptionist and me. She said she was going to ask me point blank if it was lymphoma or infectious in nature anyway as soon as I mentioned lymph nodes. Guess you can’t be too specific with medically savvy folks. I’m relieved to get it off my chest to one person, even if I hadn’t planned on telling her first. To top it off, her husband is having brain surgery tomorrow to remove a tumor!! She would have been one of the last people I wanted to burden my news on – she and all the friends who just had babies. But in a way, now we have our bad news together while everyone is sharing good news.
I started crying on the way home from lunch about it. We’re only 34! We’re young. Why us? Why are we like some crazy soap opera? One has a brain tumor and the other has cancer? Seriously when did life start imitating Grey’s Anatomy?
Well, I am looking forward to using this as an excuse to go on our Yellowstone trip though I know I’m not going to do any hard core hiking and activities. And I am looking forward to keeping Dr. Roommate company tomorrow at UCLA while her husband undergoes surgery. I have a feeling I might have a good cry or two.
Day 4 – 10/13/09 Tuesday
The doctor called me first thing this morning at 8am and now I can kinda get the ball rolling. The bf and I drove out to Arcadia to pick up my biopsy report and slides, pick up my referral for the oncologist, and to balance it out had lunch at Din Tai Fung, got some boba, and stopped by my dad’s office to pick up my birthday galoshes from my cousin.
Unfortunately when we got home and I tried to make an appointment with the oncologist, her first appointment is two weeks from now. The receptionist suggested that I could call my PCP to see if she could pull some strings to get me an earlier appointment, but we’ll see. Now I wait some more. Which is not only highly aggravating but isn’t it life threatening as my cancer could be spreading throughout my body as I type? The only positive I can see is that we could take our trip to Yellowstone in the meantime and get away from everyone and their concerned questions, have a nice a vacation before I come back and deal with reality.
It’s getting so hard to keep up the charade with my closest friends who ask me everyday if I’ve heard anything and how I’m doing. I so want to tell them, but I have so little info at this point to share. I might succumb soon. In the meantime, I warned the bf I’m going to want to eat a lot of good foods because I know won’t be able to for awhile.
I looked up some of the crazy medical terms in my pathology report. One of them said I had a large presence of “necrotic tissue” which means dead or scarred tissue.
‘What does that mean, that you have a lot of dead tissue?” the bf asked.
“I don’t know, “ I replied. “Maybe that I’m half zombie?”
Unfortunately when we got home and I tried to make an appointment with the oncologist, her first appointment is two weeks from now. The receptionist suggested that I could call my PCP to see if she could pull some strings to get me an earlier appointment, but we’ll see. Now I wait some more. Which is not only highly aggravating but isn’t it life threatening as my cancer could be spreading throughout my body as I type? The only positive I can see is that we could take our trip to Yellowstone in the meantime and get away from everyone and their concerned questions, have a nice a vacation before I come back and deal with reality.
It’s getting so hard to keep up the charade with my closest friends who ask me everyday if I’ve heard anything and how I’m doing. I so want to tell them, but I have so little info at this point to share. I might succumb soon. In the meantime, I warned the bf I’m going to want to eat a lot of good foods because I know won’t be able to for awhile.
I looked up some of the crazy medical terms in my pathology report. One of them said I had a large presence of “necrotic tissue” which means dead or scarred tissue.
‘What does that mean, that you have a lot of dead tissue?” the bf asked.
“I don’t know, “ I replied. “Maybe that I’m half zombie?”
Day 3 – 10/12/09 Monday
Waiting.
I made all the phone calls I could make this morning – to my primary care doctor to review my pathology report so I can start my plan of action, to the lab so I can pick up my report and slides tomorrow, to other pathology labs to get second opinions, back and forth to the ENT specialist and primary care doctor to make sure faxes of my ever elusive report has gotten in to the hands of my primary care doctor….
Everyone I spoke to on the phone was so nice and considerate, yet no pity in their voices. It was the perfect pitch of being sympathetic yet helpful.
And now I wait.
I’ve looked up living will and power of attorney forms, called for cost estimates to review my biopsy slides, and reviewed my health insurance plan to see what’s covered for treatment.
I should clean up the apartment a little, but I’m sleepy. I’m worried about the random aches I have, wondering if that signifies a more advanced stage than I should be. I’m dying to ask my doctor and lawyer friends for help but can’t do so without tipping them off too early.
The bf made me lunch today. A first. I keep telling him I feel ok right now. I’m gonna need this later. But I think he feels so helpless that he needs to try in some way to take care of me now.
7pm
Still waiting for the doctor to call me back. This is really pissing me off. The longer I wait for my staging, the more I’m freaking out about what stage I could be.
Been trying to figure out how to tell my family. It’ll have to be over one of our family dinner nights and I want the bf to be there. Except that I’m afraid they’ll think it’s because we have some happy announcement like we want to get married. So I suggested that maybe the bf could also ask them for permission to marry me, you know, to kinda soften the blow before the bad news? But he nixed the idea because he doesn’t want them to always associate our marriage with bad news. Good point. Plus he said nothing will really soften the blow. All they’ll be able to focus on is the bad news and we’ll just have to rip it off like a band-aid and let them absorb the shock of it for a couple days.
The bf suggested that once I start chemo, we should just shave my head instead of losing chunks of it slowly. Ugh.
I made all the phone calls I could make this morning – to my primary care doctor to review my pathology report so I can start my plan of action, to the lab so I can pick up my report and slides tomorrow, to other pathology labs to get second opinions, back and forth to the ENT specialist and primary care doctor to make sure faxes of my ever elusive report has gotten in to the hands of my primary care doctor….
Everyone I spoke to on the phone was so nice and considerate, yet no pity in their voices. It was the perfect pitch of being sympathetic yet helpful.
And now I wait.
I’ve looked up living will and power of attorney forms, called for cost estimates to review my biopsy slides, and reviewed my health insurance plan to see what’s covered for treatment.
I should clean up the apartment a little, but I’m sleepy. I’m worried about the random aches I have, wondering if that signifies a more advanced stage than I should be. I’m dying to ask my doctor and lawyer friends for help but can’t do so without tipping them off too early.
The bf made me lunch today. A first. I keep telling him I feel ok right now. I’m gonna need this later. But I think he feels so helpless that he needs to try in some way to take care of me now.
7pm
Still waiting for the doctor to call me back. This is really pissing me off. The longer I wait for my staging, the more I’m freaking out about what stage I could be.
Been trying to figure out how to tell my family. It’ll have to be over one of our family dinner nights and I want the bf to be there. Except that I’m afraid they’ll think it’s because we have some happy announcement like we want to get married. So I suggested that maybe the bf could also ask them for permission to marry me, you know, to kinda soften the blow before the bad news? But he nixed the idea because he doesn’t want them to always associate our marriage with bad news. Good point. Plus he said nothing will really soften the blow. All they’ll be able to focus on is the bad news and we’ll just have to rip it off like a band-aid and let them absorb the shock of it for a couple days.
The bf suggested that once I start chemo, we should just shave my head instead of losing chunks of it slowly. Ugh.
Day 2 - 10/11/09 Sunday
I feel like my life is in limbo and this weekend is some surreal type of purgatory. I can’t schedule anything or make any plans for the immediate future until I know how things will unfold with the doctors. I don’t know if we’ll be able to go on our Yellowstone road trip next week or whether I’ll be able to volunteer at the Animation expo next month. I have no idea whether I’ll be able to make my friend’s November wedding or how I’ll explain why I can’t RSVP just yet.
I’m worried I’ll be at least stage 2 since my chest pains and lymph node swelling went on for over two months before they caught this. And I’m angry that both my primary doctor and the endocrinologist didn’t catch it earlier. I’ve been treated for inflammation for six months! I’m also worried about how long it will take to get the referrals from the primary care physician to see the oncologist, to make an appointment with the oncologist, to get all the scans… I’m sure I’m not the only person with cancer who needs to get these things done right away.
I’m sad that I’ll also have to put my dad through this again. He was the main caretaker for my grandpa when he had lung cancer and I know he was closest to him. But I can’t imagine how it must be for a parent to worry and face the fear of their child’s mortality.
I decide to watch the latest episode of Brothers and Sisters, especially because the character of Kitty (Calista Flockhart) coincidentally just got diagnosed with lymphoma. Last week, they showed her getting a needle biopsy (which I thought I was going to get and was already freaked out by the needle. Instead I got the scarier open biopsy which meant getting put under.)
When they foreshadowed that she had lymphoma, I remember thinking “Psssh, of course she does. It’s a soap opera. Thank goodness I don’t have it.” Turns out the joke’s on me. BUT she has the “bad kind” of lymphoma - the non Hodgkins lymphoma kind which is more spread out and needed a bone marrow biopsy. Ouch. God, I hope I don’t need to do anything with my bone marrow. I really really hope I’m at Stage 1, only need a pill version of chemotherapy and get over it quickly.
“You’re laughing,” the bf confusingly says. That’s because I can’t help but laugh at how melodramatic things are. Yet they hit so close to home. “I’m going to lose my hair,” Kitty wails. “I love my hair!” You see, it is a legitimate and immediate concern for women.
By the end of the show, when Kitty’s mother Nora (Sally Field of all the weepy melodramatic people) is crying that it should be her because Kitty is so young, I’m all teary-eyed myself. The bf was just saying that yesterday because he felt like I was a “good person” and that he’d done so many bad things in his life, he deserved it more. Too bad diseases don’t judge.
My teeth have been achy and sensitive to cold liquids lately but I don’t know if I need to see a dentist or if it’s just all related to being achy in general. Plus I’m trying to taper down from the Prednisone I’ve been taking for inflammation and every time I go down a dose, I feel a little achy for a week. It feels weird to be walking around amongst people and thinking that my body is ridden with cancer. I feel like I’m in disguise as a normal healthy person.
I’m worried I’ll be at least stage 2 since my chest pains and lymph node swelling went on for over two months before they caught this. And I’m angry that both my primary doctor and the endocrinologist didn’t catch it earlier. I’ve been treated for inflammation for six months! I’m also worried about how long it will take to get the referrals from the primary care physician to see the oncologist, to make an appointment with the oncologist, to get all the scans… I’m sure I’m not the only person with cancer who needs to get these things done right away.
I’m sad that I’ll also have to put my dad through this again. He was the main caretaker for my grandpa when he had lung cancer and I know he was closest to him. But I can’t imagine how it must be for a parent to worry and face the fear of their child’s mortality.
I decide to watch the latest episode of Brothers and Sisters, especially because the character of Kitty (Calista Flockhart) coincidentally just got diagnosed with lymphoma. Last week, they showed her getting a needle biopsy (which I thought I was going to get and was already freaked out by the needle. Instead I got the scarier open biopsy which meant getting put under.)
When they foreshadowed that she had lymphoma, I remember thinking “Psssh, of course she does. It’s a soap opera. Thank goodness I don’t have it.” Turns out the joke’s on me. BUT she has the “bad kind” of lymphoma - the non Hodgkins lymphoma kind which is more spread out and needed a bone marrow biopsy. Ouch. God, I hope I don’t need to do anything with my bone marrow. I really really hope I’m at Stage 1, only need a pill version of chemotherapy and get over it quickly.
“You’re laughing,” the bf confusingly says. That’s because I can’t help but laugh at how melodramatic things are. Yet they hit so close to home. “I’m going to lose my hair,” Kitty wails. “I love my hair!” You see, it is a legitimate and immediate concern for women.
By the end of the show, when Kitty’s mother Nora (Sally Field of all the weepy melodramatic people) is crying that it should be her because Kitty is so young, I’m all teary-eyed myself. The bf was just saying that yesterday because he felt like I was a “good person” and that he’d done so many bad things in his life, he deserved it more. Too bad diseases don’t judge.
My teeth have been achy and sensitive to cold liquids lately but I don’t know if I need to see a dentist or if it’s just all related to being achy in general. Plus I’m trying to taper down from the Prednisone I’ve been taking for inflammation and every time I go down a dose, I feel a little achy for a week. It feels weird to be walking around amongst people and thinking that my body is ridden with cancer. I feel like I’m in disguise as a normal healthy person.
Day 1 – 10/10/09 Saturday
I have cancer. I HAVE CANCER. Last night I was crying to myself about how the BF and I can’t communicate about any personal issues without getting upset or defensive, and how we’ll have to figure out how to do that or find someone who can help us. Today, a giant monster truck of destruction has been sent flying into our little world and nothing will ever be the same anymore.My first three worries:
1) How am I going to tell my family and friends? My parents will be devastated.
2) OMG, I’m going to lose my hair. I LOVE my hair. It’s one of my best physical attributes. Long, plentiful, healthy black hair inherited straight from my dad himself. Shoot, should I even bother to get a haircut this month if I’m going to lose it anyway? And I guess redying the blue stripes is a moot point now.
3) What if I can’t have kids? Never thought that choice would be taken away from me so early. I thought I might just get too old to have them by the time I was ready but now it could be a whole other legitimate reason.
Funny how the brain works. Two serious reasons with a silly vain one sandwiched in between.
I had to ask “Are you serious?” when the doctor called me this morning saying it looked like Hodgkins Lymphoma. After last week’s scare when he said it could be lymphoma and then two days later, telling me the lymph node looked benign, maybe a second diagnosis will tell me, “oops wrong diagnosis. It’s something else entirely NOT CANCEROUS.” But he told me to waste no time calling the oncologist and to treat it as the actual diagnosis, though I was more than welcome to go pick up the report and slides and get a second or third pathologist’s opinion.
The bf and I take turns reading up on everything we can about Hodgkins Lymphoma. What it is, survival rates, what famous person has had it and survived, treatment options, etc. I imagine this is his worst nightmare. Reliving what he had to go through with his dad dying of lung cancer. And I feel bad about it.
All of a sudden he’s talking about getting a stable job somewhere so he can get the insurance and that we should get married. All very sweet but not practical since it might take awhile to do that and I imagine starting Monday it will be a whirlwind of calls and setting up appointments as soon as possible.
Something has changed in him though.
We have a nice lunch at the Santa Monica library courtyard and run errands for his puppet-making. I know all through the day the word CANCER pops in our heads intermittently because really, it’s not something you can tuck away for long periods of time just yet. But there’s not much we can do till Monday. We’ve decided to stay quiet about this to everyone until I know more info – what stage, what treatment, anything…
It’s so hard to keep it quiet. I’ve always believed that happiness shared is doubled, while unhappiness/grief shared is halved. I know I’m going to need my family and friends’ support, their care and most importantly their ability to make me laugh. But there’s no point in ruining anyone’s weekend or stressing everyone out until I have some answers.
I’m going out for a friend’s birthday celebration tonight. I’m not sure Octoberfest is a thing I’m looking forward to, but I should continue to do what I’d normally do as long as I can, and be there with my girlfriends. My only worry is I’ll blurt out “I HAVE CANCER” and ruin everyone’s evening.
8pm
It’s loud and crowded and I have a raging headache. I hate all people. I feel like I have Tourette’s syndrome because I randomly want to blurt out “I have cancer!” I have to try so hard to keep it in check. But the more everyone asks how I’m doing and whether I’ve heard back from my tests yet, the weirder it is to continue telling my semi-truth – that I need to go in for more tests and that I’m still waiting for a concrete diagnosis. I’m a bad liar so it has to be a partial truth to be convincing. Plus I want so bad to tell someone and I want so bad to prep them for the impending shock.
The longer the night wears on and the more tired and cranky I get, the more I’m wondering “Does having cancer give me the right to be more selfish and just do whatever I want? Like take off from a party if I don’t feel like being there anymore?” But I guess that wouldn’t be doing what I’d normally do which is stick it out and be a good friend.
The Days Go By
The morning the doctor called me with the diagnosis, I started my latest journal. I titled it "The C Word" but that blog title was already taken. I wasn't entirely sure I'd publish my ongoing journal as an online blog but after a few earnest requests and encouragement from close friends to share my thoughts, I am tentatively posting chunks at a time so that I can edit some of the more personal information out of the entries and not overwhelm anyone with the amount of words floating around in my noggin.
I decided to just title each one with the Day and Number since the diagnosis because in a way it's like this new life started on the day I got the news. Nothing has been the same since.
I decided to just title each one with the Day and Number since the diagnosis because in a way it's like this new life started on the day I got the news. Nothing has been the same since.
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