Posts Tagged: Chemo


24
Jan 11

Inspiration

Today at the Cancer Center a familiar-looking woman sat down in the chair opposite me. I thought a minute….and remembered her, from this summer. It was July. She had shoulder-length hair and she had a breast cancer diagnosis and she was receiving her first dose of chemo. She was scared. We talked about chemo and cancer and we talked (inevitably….I find that this is such a pressing concern for women with cancer) about hair loss and what it is like to be a bald woman. I showed her some of the pictures that Adrea took of me. I told her that she was beautiful and strong and that that wouldn’t stop being the case just because she had cancer, just because she was going to be bald.

So she sat down opposite me and smiled at me and we both started talking at the same time. We talked for an hour (until my Rituxan ran out and the IV line was flushed and I was disconnected). We talked about chemo (she felt like hers really wasn’t so bad, though she wasn’t overly fond of the weight that the medications made her gain), we talked about our families, we talked about world travel. We talked about being a bald woman and we talked about fear and about how, sometimes, things just work out the way that they have to work out and, somehow, it all ends up being ok, in a strange sort of way. She told me that meeting me that very first day in the infusion room was a miracle, that she needed it. That she has been thinking about me all these months and drawing strength from our conversation. That I was her inspiration.

I don’t tell you all this so that you think that I think that I am so great. I think I am a woman who did what she had to do, when she had to do it. I tell you this so that you can know, just like my new friend and I, that sometimes things turn out a certain way–not the way that we had planned or expected or desired–and that life can seem scary and weird, but, sometimes, life can inspire you anyways. Soul-level conversations can happen anywhere, even in the midst of chemicals and lab coats and needle pokes and blood pressure readings. They can happen right when and where you need them.


10
Jan 11

Just like everyone else, except with yearly radioactive PET scans

Today I had an appointment with my oncologist which was notable in that I had a mini-physical with him (something that, to the best of my memory, has never happened). I mean, the first time I met the man I was laying in a hospital bed with several huge masses in my neck and chest (the big one on my neck was obvious from several feet away; the ones in my chest had been confirmed via CT scan). I was obviously sick. There wasn’t really a point in feeling that thing on my neck because it was JUST THAT HUGE. And then every time I came in, it was all to deal with that stuff. And then those masses went away and we talked about fatigue and nausea and hair loss and then other scans, talked about my pancreas, talked about my lack of cancer, about hope and getting stronger and mental health and parenting and life. But I didn’t have a physical until today. The physical was a prerequisite of my health insurance which suddenly went, Hey, wait. We’ve paid out for a hell of a lot of medication and yet the doctor hasn’t really touched you. Maybe that should happen first and then we’ll let you get another four rounds of Rituxan. Yippee!

So today the doctor felt all my various lymph nodes (normal) and felt for other lumps and bumps and out of place things on my body (none) and concluded that everything looks pretty darn good and that I would finish out the last of my every six months for two years Rituxan as planned and then…..get a PET scan once a year (for forever, I assume?). And be diligent, once it is time to be diligent about such things, about mammograms and colonoscopies and reporting anything unusual like enormously swollen lymph nodes. But I feel, once I’ve made it past these next four weeks, like I’ll be as close to a regular, normal, 34-almost-35-year-old life as I am capable of. Just like a normal person, except with yearly scans to check for cancer (what? You don’t do that?).

So. That’s pretty cool, right?


22
Jul 10

Just a place

To her, it is just a place. It is just a bench in front of a building, not the entryway to the place where my life started changing, bits and pieces at a time. Not the doorway to the building where the awful drugs came from, the ones both terrible and wonderful because they zapped my strength and took my hair and made me sick, but they also saved my life.

To her it is just a place, just a bench. Just a place to stand and pose for photos, sweet innocence and enthusiasm abundant.


19
Jul 10

Asking and Receiving

Reminiscent of the biblical “ask and you shall receive, seek and you shall find,” I asked and my friends came through for me in a major way. I was nervous to ask….I knew it would be okay without help but….well….I did it and I’m glad I did. Thanks so much, girls. I almost didn’t realize how much I needed company until you all started coming in and hugging me. What a blessing, each and every one. : )


18
Jul 10

Open invitation

So…Adam isn’t able to come and keep me company for tomorrow morning’s chemo. Mom is with Anna. Anyone available and willing to come and hang out with me? Even for a little bit? Or drop by and see me? Or bring me trashy magazines to peruse? Or fresh baked goods?

8:30-10:30ish, Cancer Center of Santa Barbara (540 W Pueblo).

I know that it is difficult for my girls (you KNOW who you are!) to just drop on by (NO kids allowed)…no worries. I know you all love me. Just thought I’d throw this out into the world and see what happens.

P.S. If too many people show up you’ll get turned away (supposedly only one visitor per patient, though I have seen the rules bent a bit from time to time!).


7
Jul 10

Today I have a case of the crazies

Ever have one of those days where it drags on so long and so painfully that you think that something has happened in the space/time continuum? Like, maybe somehow TWO bad days have been compressed into one day?

It might have something to do with the lack of sleep last night. No matter how sternly I scold myself for doing this, no matter how absolutely dreadfully not calming and not sleep-inducing this is, I still persist in googling cancer related facts and articles and all manner of frightening things late at night sometimes when I cannot sleep. Usually just prior to a scan. Because I am crazy, that is why.

I think that something deep inside of me is thinking that maybe if I keep searching I will come across that elusive website out there, the one devoted to explaining and predicting my entire life, including cancer status, disease progression, lifetimes of loved ones, etc. You know, the basics. For my edification. Wouldn’t that be nifty? I keep looking but I haven’t come across it yet.

I was trying to do a million things today: write, make phone calls, email, and all manner of assorted and sundry various things that kept me in my pajamas until (embarrassing!) 11 am. All the while, my tiny warlord conspired to keep my away from all my Very Important Activities by continually climbing on my lap, shouting during important phone calls and whining and requiring all manner of care. Yes, it’s my job to take care of her but I swear to you that Anna was being especially needy today. I felt….exasperated. Yes, that is exactly it. Exasperated in the way that you feel when there is the tiny bubble of laughter that forms in the back of your throat when you think about how ridiculous that it is that you are trying to call your doctor regarding your Very Important Scan while your daughter is screaming “MAMA COME WIPE ME NOW! RIGHT NOW!” and you realize that it is all faintly ridiculous, the idea that stay-at-home Moms have all this free time. Exasperated also in the sort of way that keeps your fondness for the irritating habits of your beloved child at the forefront: I could still think to myself, despite the inconvenience, that, GEEZ, is she ever cute! as she creates enormous messes requiring massive cleanup effort on my part. Really, I am not being sarcastic. I think that Anna is so adorable that I sometimes have to make myself get all stern because otherwise I melt at the perfection of her squeaky little voice.

Swimming lesson went well today. She is slowly getting used to the idea of being on her back in the water (previously a big fear for her). Despite the fact that she repeatedly told me, throughout the day, starting from breakfast time, that she did NOT want to go to swim lesson and she would NOT go, not EVER EVER EVER, she did just great when I handed her over to her teacher. Boy, was I ever glad that she did not make good on her threat to hit her teacher (no, seriously, she really told me that at lunch, that if I made her go to swim lesson she would hit Rachel. “I hope you won’t really do that,” I replied, looking her straight in the eye).

Everything feels so crazy right now. I kind of want to fastforward a little bit to the part where things are a bit more slowed down and mellow. Can I hope for that? I can also spin all sorts of fantastical maladventures regarding my in-the-air cancer status. I have refused to allow Adam to make plans regarding either (a) travel or (b) kitchen remodel, until after I get the results of these scans because I can’t go there until I get it in my head that we aren’t headed into another storm that we have to brace ourselves against.

Tomorrow: scan. Friday: blood draw and (hopefully) preliminary scan results. Then it is a whirlwind of family and activities because of Kenny’s upcoming memorial service and (gulp) oh, yeah, another few visits to the Cancer Center.


27
Jun 10

Maybe you had to be there

Fantastic conversation had by Adam and I in the car yesterday. It began with a discussion of Adam’s hobbies and the expense incurred therein. We were talking about Adam kind of wanting a new road bike and how crazy expensive they are….and that led to talking about fishing expeditions and pig hunting (? He’s crazy) and all the other stuff he likes to do.

(Me): “You know….there really isn’t anything, anything at all, that I do that is as expensive as any single one of your hobbies.”

(Adam, deadpan): “Except your chemo.”

(Me, deadpan back): “I don’t really consider that a hobby of mine.”

Maybe you had to be there. It was funny. Really funny. (And you should know that we’ve thought it over and decided that keeping me alive is a pretty good way to spend our cash. Even though we’d rather use it to buy stuff).


23
Apr 10

Really sick

We don’t have a television but I do enjoy watching some TV shows on Hulu (“with limited commercial interruption” as the announcer always says). The commercial that I’ve gotten for the last few times I’ve watched shows (it changes show to show based, I think?, on the type of show it is and what the anticipated audience is–or maybe it is particular to the viewer’s viewing patterns? I’m not sure. If so, hmmm….what does this say about me and the shows I watch?) is one to spread awareness of HPV and its connection with cervical cancer and other associated really bad things. There is a line in one of the ads (it is all about “what if” this and “what if” that) that says, “What if I got really sick?” (accompanying picture, bald woman sitting in what I think of as a “chemo chair”–sort of an imitation leather recliner–hooked up to an IV) and, to be honest, this portion of the ad freaks me the fuck out. It makes me feel sick, just watching it.

I know that they are going for the scare tactic with young women, trying to get them to be aware of the “what ifs” and all that but I have to say that from my standpoint, it can’t really work. It can’t because that is just an image to a young woman. That is just an idea of a cancer patient, of someone to pity. Of something that is, of course, bad…Bad bad, even….but not something that anyone who hasn’t been there can really connect with. You know it’s bad. You just don’t know how bad.

I have been trying to disconnect myself from that cancer patient image. I impatiently throw away all the letters from the Cancer Center (well, not bills, but informational flyers), most especially the invitations (sent every damn week, it seems) to attend the Young Adult Cancer Support Group. I just can’t go there because I don’t want to be there. I don’t want to think about that time. I don’t want to think about it, I don’t want to imagine it, I don’t want to wallow in it, I don’t want to obsess over it, I don’t even want to remember it.

But, secretly? I do. It is always with me. It is with me like the whorls on my fingertips, the breath in my lungs, the scars on my neck and my stomach. It is etched in my heart and my soul. It is the reason that I’ve lost my religion. It is within me as a fire and an anger and a deep, deep, immovable sadness. A reckoning. A counting of days since and from and to. A recollection of all manners of deep, dark times and startling beauty.

Being really sick? I don’t recommend it.


18
Jan 10

angst

Having a totally pathetic day.

It is taking major resolves to not take it out on Anna. Anna is not being particularly difficult. She’s been away from my care for half the day, in fact. She stayed in her room for almost two hours for “rest time.” But chemo day makes me want to just go into my own little burrow and hide. Be alone, totally alone.

It’s the hardest thing in the world to stay here, to do this. I don’t want to do this.

I have messages from the cancer center, from the imaging center. The insurance snafu that I spent countless hours on the phone trying to resolve last week is apparently not resolved after all. All of the people I need to speak with keep odd hours and are already home for the day today (at 3 and 4 pm! What?). I’m frustrated, I’m annoyed, I want to throw in the towel. Why in the world do I need to be the go between for the doctor’s office, the insurance office, and the imaging center? Why? Why do I need to straighten out authorization numbers? I feel like throwing things but, looking around my house, there is nothing that would be completely satisfying to throw. The large mirror over the fireplace would be dramatic and would feel good for a moment but then I’d have to deal with all of that broken glass. And then I’d have to go pick out a new mirror. Not to mention the whole bad luck thing. I need all the luck I can get. All the non-breakables are too humorous (I tried kicking Anna’s Rody but it just bounced in a way that seemed to mock me; it was slightly humorous but not enough, apparently, to turn my bad mood around).

I hate this. I really do.

Meanwhile, Anna prattles on happily, blissfully unaware of my inner emotional turmoil.


11
Jan 10

back in the (chemo) saddle again

Had my first of four chemo sessions (for this month) today. Two more of these groups of four (the next one will be six months from now, followed by one year from now).

We met with my oncologist before the Rituxan infusion and he reminded us of something that both Adam and I had (oh so conveniently) forgotten: he is recommending that we go back up to Stanford (yes, again) to get their Lymphoma specialists to weigh in on my diagnosis of Diffuse Large B Cell Non-Hodgkin’s Lymphoma. I guess we got so wrapped up in the pancreas stuff that we lost sight of this.

Just in case you’ve forgotten the minutia (how could you, it’s so fascinating…yawn) of my medical history, back in July when I had my 6 month follow-up PET scan there was some metabolically active tissue in my thymus. Metabolic activity is usually indicative of cancer, but it can also be indicative of other things (e.g., there is a chance of a false positive). In my case, my oncologist suspected that it may be thymic regeneration (which would be a fine, or even a good thing, indicating my body’s attempt to return to a state of normal immunity); however, it could be….lingering cancer, or a return of cancer. My oncologist wants to rule out a different kind of lymphoma: Primary Mediastinal B-Cell Lymphoma (a diffuse, large B-Cell lymphoma that originates in the thymus and mostly strikes younger adults).

If it is this other Lymphoma (Primary Mediastinal blah blah blah) than a likely course of treatment would be radiation.

So. We’re going to continue on with the Rituxan for this round of four doses, each a week apart, with a PET scan sometime this month. After the PET scan, it’s up to Stanford I’ll go, PET images on a disk in my hand, to consult with the Lymphoma specialists up there and see what they think.

I wrote about this last time, about feeling like maybe I’m being a bit of a drama queen about my cancer, my health in general, but DUDE. This stuff is scary. It’s kind of hard not to. It’s over, but not really. I have hair and I’m living my life and I don’t have any visible tumors but the cancer is still part of what I’m living right now. It’s dark and scary and it might very well be okay and just fine but, on the other hand, it might not be.