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.
January 28, 2009
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.
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.
January 26, 2009
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
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
January 25, 2009
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.
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
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
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