CHeMo Brain

I feel like I am waking up after a long dream. When I was first diagnosed I was in denial. Not me. Not at 30 years old. I'm in perfect health! Then came the rage, the uncontrollable anger at the cards I was being dealt. The next emotion was fear. I think I might still be in this emotional mentality with peaks of hope. The sickness from the chemo is a distraction from the undercurrent of fear that pokes its head at times to remind me, "what if this doesn't kill it?".

What I have learned though, is that when you are diagnosed with ovarian cancer, decisions need to be made quickly. Thank god forLa, If I hadn't talked to her about all my options and the actually science behind why the different treatments, I might have more easily been swayed away from Doc Feinstein. He's a specialist in gynecological oncology; a specialist in both the female reproduction system and cancer. These specialists do a very thorough exploration and eradication of all the cancer that they see. They also rinse the body cavity in solutions that kill microscopic cells that are "free" in the abdomen. This initial surgery goes a long way toward extending life and preparing the body for the chemotherapy to follow.

The most recent research shows that the most effective treatment for advanced ovarian cancer is a combination of intravenous chemotherapy along with high doses of chemotherapy dripped directly into the abdomen. Ovarian cancer is divided into four stages. In stage 1, the cancerous growth is limited to the ovaries. If there is free abdominal fluid (ascites) containing cancer cells, then it becomes Stage Ic. Stage II (my cancer)growth is limited to the pelvic organs. This indicates spread to nearby structures. If the uterus or fallopian tubes are involved, then it is stage IIa; if other nearby tissues are involved, it is stage IIb; and again, if there is free abdominal fluid containing cancer cells, the stage becomes IIc. In stage III the growth is limited to the abdominal cavity. Here the tumor involves other organs in the abdomen. Stage IV the growth involves some distant structure. This stage indicates cancerous involvement away from the abdominal cavity, such as in the chest cavity or neck lymph nodes.

I have read a lot of depressing statistics about life expectancy with ovarian cancer but La pointed out that these are more oft than not backward-leaning statistics; they tell us how things were in the past. New drugs and therapies come out every month (it seems), and these statistics get less predictive as the days roll forward. Secondly, there is a "left over" fear from the days when a diagnosis of ovarian cancer meant death in a predictable number of months. Now, the disease is chronic. That is not such a good thing either, but it beats the alternative by a life time.

Ovarian cancer is a difficult disease to completely wipe out. Seventy percent of the time, the disease returns, even after remission and successful first treatments and surgery. What looks like a "long term battle" can better be described as "living with cancer". Modern medications control most side affects, so it is possible, no matter how many times the cancer returns, to live a normal, happy, and quality life between the treatments, The current standard of treatment (carboplatin and paclitaxel) for patients with advanced ovarian cancer has been established in light of the results from various clinical trials. After debulking surgery, a combination of carboplatin and paclitaxel is considered to be the best treatment option in terms of survival and quality of life since most patients on this chemotherapy will experience relapse, several studies have explored, and continue to do so, various modifications and alternatives to standard therapy in order to attain improved efficacy. Various modifications of dose, schedule, or route of standard regimens have shown no benefit, apart from intraperitoneal therapy, which has produced mixed results.

The side affects of carboplatin and paclitaxel differ with individual circumstances. One very common side affect is "chemobrain"; a usually temporary mental response that comes after treatment- found in other cancer regiments besides ovarian; breast cancer for example (sometimes lingering after treatments end). It is characterized by various degrees of memory problems, concentration difficulties, and occasional confusion. I know I am already suffering from this because I am experiencing clumsiness, tingling and numbness in my limbs, I struggle with positional sense - they call it experiencing peripheral neuropathy. Patients who take drugs such as Taxol, Cisplatin, Paraplatin and Hycamtin (Topotecan in my case) have a higher risk of suffering from it. The symptoms are exacerbated in those who have a longer chemotherapy treatment series or faster treatment series. Acupuncture treatments and massage therapy ease neuropathy and produce general well-being. Herbs such as ginkgo biloba and blue-green algae, and vitamins such as B-6, B-complex, B-12, B-3, and E help ease side effects. I like Anne Helman's personal comments on PET scans: "A ct/pet scan (or pet) would show you things that are less than one cubic centimeter in size, i.e. microscopic seeding. This microscopic stuff is dangerous and aggressive, and not uncommon in ovarian cancer. It can cover organs faster than one can blink an eye." So, be forewarned; you think, for example, there are only 2 lesions - if you get a pet scan it may show stuff in other areas and while you want to know what's going on, at the same time it's unnerving. The first time I saw my disease on a combined ct/pet (on the doctor's computer screen), it flipped me out because there was then no denying what was going on. And, knowing where it is, seeing it, well, it brings it crashing down around you. It took me a long time to process it. I would still ONLY have ct/pet scans though because they do give a more complete picture of what's going on.

Chemobrain.

Becca's scar

At treatment on Monday Ginger introduced me to Becca who is a younger case as well (she is 38- diagnosed at 34 and no kids). Becca showed me her scar from her most recent surgery to remove part of her intestine along with a full historectomy. Omigod. I would have freaked out if it weren't for Becca's take charge attitude. Almost a little too aggressive. But, anyway, Becca's cancer was diagnosed when it was in stage 2 but moved quickly from her ovaries into her blood stream and then her liver and stomach. Anyhow, Becca and I got to talking and like the few other people I've talked with who have or had cancer, she got personal right away. We talked about her surgeries and the chemo she is undergoing and her sex life-- nonexistant and painful. And I thought losing my fertility was worst case scenario, I can't imagine having to give up or struggle with sex. Argh. I don't even want to think about this stuff anymore. There is so much to learn and know about cancer-- each case is sooo different. While I have had both surgery and chemo, there are a lot of cancer survivors who have just had surgeries. I am glad we decided to go the less conservative route with the unilateral removal and aggressive 6cem. It sucks right now as I lay in bed squeezing my eyes shut every 10 minutes to avoid vomiting, but I know it is the right decision. I'd rather have a chance to survive intact- sans R ovary- after going through chemo.

Chemical Dreams

Toxic, weak
wrecked, wasted
Poisioned by intent
to kill, almost kill

How close can I go to the edge?
What if I peer over?
What if it is easier to go into the dark?
Nothing makes sense.

These chemicals. These chemicals.

Eva

Since you went away
the days grow long
and soon I hear old winter
but I miss you most of all .... my darling
when autumn leaves start to fall

Band-Aide

My little flexible friend
smooth and pale as the Cream of Wheat
I slipped upon, in the kitchen there;
the elastic lips of my knees gape,
I stroke you with my finger.

Rounded corners frame your plastic beauty
as if you fear the menace of an unchecked angle against my skin
You worry about my well being,
your fibers grip my open pores
as if you yearn to remove my pain.

I cannot blame my blood for its frantic flow
for it is young, frightened—far from its vessels’ familiar paths.
But I know you will soothe, embrace, rock it to sleep
in your square cotton cradle.

Oh! If only my human friends could imitate
your primitive healing arts,
and clasp my pain when I am hurting,
comfort me when I am far from home.

mesmerized

How easily the eye can become intoxicated, and miss
the heavy throb of the clarinet’s fat throat,
or the crescents of sweat beneath the ladies
arms
as they reach for the pale mortadella sausage
heaped on the buffet

Of hair and other things

I’m happy to write that this past week has probably been the best I’ve felt overall since this all started. My back pain is much better. I’m able to sleep without taking sleeping pills, (so far) my surgery general aches and pains are gone - I just felt kind of normal--I even went to a yoga class! However, the mouth and feet aches and pains started to increase along with me being able to pull out pretty large clumps of hair early this morning. My hair has also turned dark brown and feels much softer- like the down on a baby bird. While ginger said I may not lose much hair because of the Taxol, she warned that it may change texture or color- it's just different for each person. I just didn’t feel like crying about it - it’s just hair, right?! Anyway, I am going to make an appointment with Jen to get a style cut into my hair - might as well have fun with it. I've always looked nice in short hair!

Keep on keeping on

It has been almost a week since my last treatment and things have gone much better than the first time. I haven’t been as wiped out and out of it which is great, but other side effects seem to be kicking in like tingling in my feet, my eyebrows starting to come out and I’ve been STARVING!

The first 2 were expected, but I wasn’t planning on being so hungry and not being able to fill up. My oncology nurse told me that this is not the norm either, but was glad to hear I was eating versus the alternative. However, being the patient, you don’t want to be on the extreme side of anything so I have asked to see if there is something they can do for my next treatment that might balance this out.

The weird thing is is that even though this recovery is going better than the last, my spirits seemed to have dropped in the past couple of days and I’m not exactly sure why. I think it has to do with the reality that going through chemotherapy is changing me inside and out and it is impossible to mentally prepare for every little thing as you don’t know what the change/side effect might be and what you’ll have to do to manage or maintain it.

It seems that most of the internal things (ie, tingling feet) can be managed through some sort of medication which is good, but lets face it, the external part of my body is the part of my identity that I have to look at every day. It is for everyone. The scar on my abdomen, the teeth I am loosing, my tonenails, eyebrows, different shape of my body are all things I have to come to terms with throughout this process. I realize that some of these things are only temporary, but I guess I’m just hoping I will still recognize myself over the course of the coming months because right now, nothing feels the same inside or out.

And as I write this, I keep thinking about this one quote or part of a quote that a couple of you have shared with me - “Be kinder than necessary, for everyone you meet is fighting some kind of battle”. So, as you all let me drone on about my woes each week, please know that I know I’m not the only one fighting some kind of battle - we all have issues we struggle with regularly - I’m just the only one who posts it for the world to see.

Antsy

Okay, so I was given a false sense of wellness the day after my first chemo treatment. I came home last Tuesday night, I woke up Wednesday, had some breakfast with lou lou. It was great! Then, “it” kicked in – “it” being the effects of the chemo drugs. I’ve spent the past week trying to maintain some kind of a regular daily schedule which is very difficult to do when you feel sick (although – no vomiting so far!!!), you are fatigued (which is hard to make sense of because you feel like you aren’t doing anything to make you tired), you can’t sleep (but you’re tired and desperately just want to sleep through the entire experience), you take one step forward and then one back day in and out (very frustrating when you just want to get better and move on!).
I will say that yesterday was the best day yet and I made it out of the house to go to yoga. I mostly sat on the mat and focused on my breathing - just being around other people breathing gave me a little more inner strength. My litany of aches and pains (sore lips and teeth, dry skin, a rash on my arms, feeling “antsy”, chest pain, etc.) seemed to be more manageable. I honestly think that if it weren’t for the aching in my mouth, tounge and teeth that I’d feel quite normal. Yes, this is the first thing on my list to discuss with my doctor this week ☺

ugly

You've seen the ugly side of me
The livid, darkened, screwed up face
You've heard me shout some bitter words
You've watched me tear up tender roots
Of love, and hurl them to the wind

And wondered how some day I'd mend
The fences that are trampled down
And yet-your arms are always there
Your heart absorbs the fiercest blows

Your rough hands stroke my rumpled hair
You rock me 'til my inner child
Has spent her fury and her fear
And when she smiles and reaches out
She finds that you, my love, are here.

none

I hold my face in my two hands to keep the loneliness warm
two hands protecting, two hands nourishing,
two hands preventing my soul from leaving me in anger.

Do not go gentle into that good night. Rage, rage against the dying of the light.

Sleeping Bear

Fuck it. I do not have the energy nor patience to figure this out. I tried not to let my anger take me here, but it has and after 2 sleepless nights I have made the decision (as if that were the hard part), that if I need to be held, cradled, kissed, made love to, or have my hair held away from my face as I retch into the toliet in the middle of the fucking night, well, god damn, I'd much rather sleep alone than lay awake holding my breath, afraid of waking the sleeping bear. It is worrisome, if all it takes to rile the beast is a 3am text, what about when the baby cries? My heart is open but my senses are protective and closing in. Careful, don't let the mouse king rule your castle.

preparing

My bigger focus the past few days is mentally preparing myself for my second treatment tomorrow. I’m definitely becoming a little more anxious. It is difficult to be feeling good, knowing that you are about to do something that is going to make you feel like crap. The fear of the unknown is never easy and I’m just wondering what other side effects could be lurking around the corner. But, like with many things in life, we’ll cross that bridge when we get to it. And who knows, I may never get there!

Hurting

Everything is hurting. My eyes, my feet, my mouth, my stomach. Each with their own individual, specific pain. Which is really quite annoying because just when I've gotten adjusted to the blurry eyes and burning in the back of my retina, then the sores and chemical burn and taste overwhelm my mouth and I spend hours trying to figure out how to sooth that pain before the horrible nausea overtakes me and I try to lay as still as possible so that it will pass and when it doesn't and I have to get it out I fear I can't make it to the bathroom because it will take too much energy. My body is slowly deteriorating, falling apart around me and I haven't the will to stop it..... Making love is the only thing that brings me back inside myself and reminds me to fight.

Taxol

Well, we made it back and got a bed right away! Phew. It took several hours for them to get things going. They had to give me several different meds before they would administer the chemo. They gave me 2 separate doses of anti-nausea medicine, then they gave me some Benedryl which made me feel a little dizzy, I had blurred vision and it made my throat feel like it was swelling up and then some other pill to help calm your nerves. All of this actually made me a little more anxious as they were making me feel weird and we hadn’t even gotten to the hard core drugs yet! Plus, I had a horrible reaction to compazine (a commonly used anti-naseua med) about 8 years ago when I was in grad school at MI. Went to the hospital for strep and got an IV bag full of compazine - was mistake on their part. Ginger kept reminding me that drugs will work differently when they’re going straight into your blood stream - it’s almost immediate. Next drug was the Taxol and they say that usually within the first few drops, they can tell if you’re going to have a reaction…I don’t know if mine was within the first few drops but it took no time before my face/neck felt like it was getting fried by the sun! They stopped the Taxol and then just tried to slow the pace of how quickly it was entering my body and it worked. After about 2 hours or so (I was a bit groggy/sleepy during this time), they started the Carboplatin and lucky me - no side effects at all I was done by 1:25 pm and have been hanging out to see if anything is going to happen, but all is good. This is quite a relief! Right now we’re waiting to see if I can go home tonight. I will be armed with lots of anti-nausea drugs and am anticipating the fatigue to set in, but really couldn’t be more optimistic about how it went today.

Sick

a dedication

I struggle with maintaining friendships with all the wonderful people in my life. It's not necessarily a time management thing, more like a struggle to preserve the space and time I need for myself. This is a challenge because I equally crave spontinaiety and the assurance that I will get to spend time with those I care most about. While I am guilty of having "favorites" who for better or worse recieve more or less of me at a time, I do believe that I can't always give the same amount to everyone. It doesn't work that way for me. I know people who dole out their time equally, sometimes in a roation. Dinner with this one, coffee with that one. While I can disapear from my friend's lives for a week at a time, I believe, maybe falsely, that they know how much I love them and that they are always with me. I don't ever turn off my affection or belief in them. Because I have made the decision to share my struggle with cancer with my friends, I have shared special moments with many of them over the month. Moments where I show them my vulnerabilty and give to them my worry. I am so blessed. Each one of them unique in their response, yet together a support system that will by itself will the cancer away.

Going to Battle

I'm ready.
Cancer? No problem......
Healing my soul and living from my heart, not so easy.

My dogs jump on people

Tall and stiff as an oak
Piercing eyes that have occasion to lull
California Twirl?

Not so fast
Lazy feet
Dancing or defiling?

Release

Hot, thin air surrounding her body
too overwhelmed to take her next breath

the crickets come without warning
sounds, swarms

sweat drips down her nose hot, charged air surrounds her heart
fleeing through the thickets
looking for release

the pain comes with much warning
desire, need, Survival
lumps form in her throat
charged, volatile, ready
bring it, bring it, bring ......

release never comes

A New Year

Day 2 of a new year and I haven't stopped yet to think about what that means to me. I think I stopped thinking in years when I started bike racing 4 years ago. Time started to fall more evenly into seasons. Off-season and Race season. Not much else in between. A Ying and Yang. But not in balance. I was woefully out of balance during much of the last few years. By choice? By design? By sacrafice? In the absence of my own ability to live a balanced life with intention I fell into the trap of adapting and adopting the patterns and plans of others--at first as guidance, but eventually as wrote. Important life lessons usually come to me at an expensive price-- my mom always likes to remind me that I live life hard--I go after things I want with unrelenting passion, I fall in love hard and let my heart get shattered, I am brutally honest even when it means cutting someone out of my life--but this is the price I have always been willing to pay--depleting my emotional bank to zero to experience the satisfaction of filling it back up. I feel as though I've reached a point in my life where this type of living isn't necessary anymore. I owned it as a badge of courage, as a way to say, "I am strong. I am tough. I can do anything" yet in reality it was a mechanism I learned to apply to the crazed way I pursued life. Trying on and discarding things for fit. I think, in this new year, it would benefit me to avoid using my old mechanisms--just because they "worked"- and approaching my life with much more intention. Simple intention. Integrity. Open Heart. Looking in my mirror, not everyone else's. Something to think about.