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 quic

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kly 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.

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.

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.

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.

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.

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.

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 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.

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.