Yesterday, had a mini-crisis on the way home from treatment. As I was getting on the freeway, I felt a warm drip under my shirt. Looking down, I noticed that my chemo catheter had come undone and there was blood in the line. Driving and freaking out at the same time, I kept looking under my shirt to see if I was bleeding at the surgical site. Nothing, just blood on one side of the line and clear liquid on the other. I turned around on the overpass and headed back to the hospital to get it checked out. Turns out, the needle in the port got jostled somehow and caused bleeding into my catheter. It eventually clotted in the line and then backed up the chemo medicine trying to come through. Nurses cleaned it up, gave me a saline flush and new bandages, turned the pump back on and I was back in business. Not fun.
Today, in the treatment waiting room there was a big crowd. All cancer patients waiting for their turn on the radiation machine, and all appeared to be in their 60s and 70s. Two of the ladies had on colorful scarves on their heads but dull, worn-out expressions on their face. I couldn't escape the absurd sensation that everyone was staring at me like I was intruding into a sacred circle of sick people. That waiting room is a kind of home at the hospital; with its comfortable chairs, ambient lighting and a serene Japanese-style water garden outside the picture window. Could they think I was an invader or tourist there to haughtily drink their apple juice and read from their magazines in my apparent state of youth and vitality? Once they heard my name called by the radiation tech and once they noticed the chemo pump on my shoulder, they seemed to settle into some kind of acknowledgment that my membership in this club was bought and paid for just as theirs was. There was no triumph for me in this, just as there was no unkindness intended on their part. We were all there to get well, and for a brief time, to share this small but pleasant waiting room where the paths of our individual cancers converged.
Thursday, June 12, 2008
Wednesday, June 11, 2008
Spoiler Alert: Too Much Information?
Yesterday, I had my first chemo cassette switched out for the week. My good friend Daphne met me in the infusion room at the doctor's office. As the nurses are changing the bandages & tubing around the surgical site, she noticed the sizable bump in my upper chest where the port went in. She said it was like a little mountain and the nurse laughed. I chimed in that the word mountain has never been used to describe any part of my chest. No bra possible for the past week due to what amounts to a construction zone on my chest, so when they changed out the bandages, I necessarily had to flash my boobs at the older gentleman sitting across the room in his own infusion chair. After having two kids, I've kind of lost my sense of modesty in medical situations but I could see that he was doing his best to be politely discreet by trying not to get caught like a deer in the headlights, so to speak.
Today, as I climbed onto the table for treatment #6 of 28, I was thinking it would be nice to lie facing up instead of always on my belly. The treatment room ceiling is made up of hundreds of tiny, sparkling lights meant to resemble a heavenly constellation field, but I don't ever get to enjoy that view. My head has to be down on one side, the same side, every single time for "the treatment position". I have to lie perfectly still so that they can line me up with the lasers using the 3 tattoos on my hips and backside as reference points...which means that my pants have to be slightly lowered and I'm doing my best plumber's crack impression for a room full of techs and physicists. Totally glamourous, right?? But I accept that it is what it is since cancer is never a beautiful thing; so I just pretend that I am lying in a tanning bed enjoying a brief nap since I'm getting zapped with rays anyway. No one is bringing me a mai tai or pina colada, but oh, the power of imagination to overcome Too Much Information. I warned ya.
Today, as I climbed onto the table for treatment #6 of 28, I was thinking it would be nice to lie facing up instead of always on my belly. The treatment room ceiling is made up of hundreds of tiny, sparkling lights meant to resemble a heavenly constellation field, but I don't ever get to enjoy that view. My head has to be down on one side, the same side, every single time for "the treatment position". I have to lie perfectly still so that they can line me up with the lasers using the 3 tattoos on my hips and backside as reference points...which means that my pants have to be slightly lowered and I'm doing my best plumber's crack impression for a room full of techs and physicists. Totally glamourous, right?? But I accept that it is what it is since cancer is never a beautiful thing; so I just pretend that I am lying in a tanning bed enjoying a brief nap since I'm getting zapped with rays anyway. No one is bringing me a mai tai or pina colada, but oh, the power of imagination to overcome Too Much Information. I warned ya.
Monday, June 9, 2008
Hope Floats
We lost my mom after her 2-year battle with colon cancer. She passed away one month before her first granchild was born-- my nephew, Connor. His ultrasound picture was the closest she would ever come to seeing her grandchild. Connor is now 12 years old. My brother Zhivago and his wife Toni have done an incredible job raising him to become a sweet and loving kid. My mom had five kids- me, Nina, Zhivago, and twins Mike & Jeff. There is an exquisite kind of pain in knowing that my mom is not around to know that I had twins of my own. In so many ways beyond articulation, I feel that some aspects of my life have eerily re-traced her own...but somehow I'm meant to absorb a profound lesson from her life and transcend the fate prepared for me in order to write a new one. I remember thinking often over the years that one day I would surpass my mom's age at the time of her death. There is a kind of hubris in assuming that I would age past my mom, even though the sentiment was borne innocently out of grief for a parent lost too soon. And the grim realization that I had to break the news of my diagnosis to my family, especially to my dad, was oppresive to me because it re-awakened the terrible sense of shared grief which had lain dormant for so many years. But despite the gravity of the circumstances, and the difficulties that lay ahead, I can still manage to count my blessings and recognize the good fortune I have in friends, family, and my children.
On my way to treatment today, I was stopped in the hallway by a stranger who knew my name. She caught me by surprise but she introduced herself as Kathy, the hospital social worker. She introduces herself to all the cancer patients in order to assess their emotional health, advise of cancer care resources, help with living directives such as a will or power of attorney, etc. She sat me down in a conference room and I sat facing the window. Outside the wind was blustering and the rain fell sideways, but there was a distant pocket of bright grey light due west. It's June, and outside people were bundled up like it was still January. Our conversation unfolded comfortably, and I found her to be compassionate and intuitive; but I couldn't help but look beyond her to the window where her head was framed by the relentless and driving rain. She asked about my kids, my husband, my family, my mom and even my friends. She said I was remarkably calm and composed. She asked me if I ever cried over this, and the bluntness of the question inserted silence into the room. She said it's ok to be strong for everyone else, but told me that if I hold all the stress in like a balloon, then it will only grow until it finally pops. I need to let a little air out every now and then, not all at once, but just enough so that I can find a healthy release. My sister once said that you can actually retain stress at the molecular level, so find a healthy outlet before it consumes you.
I am taking all this very seriously, but I also have chosen to be cheerful and cautiously optimistic every day-- trying to find humor and laughter too. I sincerely thank the countless techs, nurses and doctors who treat me daily because they are the people who are saving my life. I find unabated joy in my children and I bask in the comfort and love that is my family. I have deep gratitude for reliable old friends who have been there for years, a phonecall away. New friends who have shown their character and mettle in a time of need. Despite this terrible diagnosis, I feel truly blessed by the amazing people I have in my life. After my treatment, the rain finally stops and the sun is blazing for a brief moment. Even when you feel like you're drowning, hope floats.
On my way to treatment today, I was stopped in the hallway by a stranger who knew my name. She caught me by surprise but she introduced herself as Kathy, the hospital social worker. She introduces herself to all the cancer patients in order to assess their emotional health, advise of cancer care resources, help with living directives such as a will or power of attorney, etc. She sat me down in a conference room and I sat facing the window. Outside the wind was blustering and the rain fell sideways, but there was a distant pocket of bright grey light due west. It's June, and outside people were bundled up like it was still January. Our conversation unfolded comfortably, and I found her to be compassionate and intuitive; but I couldn't help but look beyond her to the window where her head was framed by the relentless and driving rain. She asked about my kids, my husband, my family, my mom and even my friends. She said I was remarkably calm and composed. She asked me if I ever cried over this, and the bluntness of the question inserted silence into the room. She said it's ok to be strong for everyone else, but told me that if I hold all the stress in like a balloon, then it will only grow until it finally pops. I need to let a little air out every now and then, not all at once, but just enough so that I can find a healthy release. My sister once said that you can actually retain stress at the molecular level, so find a healthy outlet before it consumes you.
I am taking all this very seriously, but I also have chosen to be cheerful and cautiously optimistic every day-- trying to find humor and laughter too. I sincerely thank the countless techs, nurses and doctors who treat me daily because they are the people who are saving my life. I find unabated joy in my children and I bask in the comfort and love that is my family. I have deep gratitude for reliable old friends who have been there for years, a phonecall away. New friends who have shown their character and mettle in a time of need. Despite this terrible diagnosis, I feel truly blessed by the amazing people I have in my life. After my treatment, the rain finally stops and the sun is blazing for a brief moment. Even when you feel like you're drowning, hope floats.
Saturday, June 7, 2008
1 week down....5 to go
About 3 weeks before I ever found out I had cancer, I went in for a haircut because my hair was down to the small of my back and the kids were practically swinging from it. I had an upcoming business trip to San Diego so I didn't want to do anything drastic, but I was ready for a new look. I asked them if they donated hair to Locks of Love-- a charity which donates real human hair to make wigs for cancer patients. They said they needed at least 10 inches for the donation to be viable. I was anxious because it would bring my hair up just under my ears if I cut it all off. But I told the stylist to go for it; so she put my hair into two pigtails and cut both off with sweeping clips. Just like that, she took 10 inches off and now it would become a wig for someone in need. How's that for foreshadowing??
So I gave myself a break yesterday because the cloud over my senses after the portacath surgery finally lifted. The port scar is healing, but the tape around it is starting to itch and I can't even scratch it. They used medical "super glue" to close the wound instead of stitches. I still feel generally more fatigued, but my mind is clearer and I seem to be coping well with the chemo medication. I have a small needle in my chest with tape and dressings around it. From this, there is long plastic tubing (kind of like what you see with an IV) which trails down from the port all along my right side and hooks up to a chemo pump. It resembles a giant iPod and fits inside a black satchel with a strap on it. I have to wear it on my shoulder 24/7 and be careful not to tangle up the tubes when I sleep at night. Inside the pump is a "cassette" which houses the chemo medicine in a small plastic pouch. It is a 100mL reservoir and the pump automatically delivers about 14mL of chemo into my bloodstream every 24 hours. When the medicine is pumped, it makes a camera shutter sound which I've learned to become oblivious to. Every Tuesday, I go into the oncologist's office and they switch out the empty cassette for a new one for the next week. I'm not expected to lose a lot of hair since the chemo is a low continuous dose over a long period of time, and the radiation therapy is targeting my lower body instead. But I was thinking how funny it would be if I ended up getting a wig made of my own donated hair......
So I gave myself a break yesterday because the cloud over my senses after the portacath surgery finally lifted. The port scar is healing, but the tape around it is starting to itch and I can't even scratch it. They used medical "super glue" to close the wound instead of stitches. I still feel generally more fatigued, but my mind is clearer and I seem to be coping well with the chemo medication. I have a small needle in my chest with tape and dressings around it. From this, there is long plastic tubing (kind of like what you see with an IV) which trails down from the port all along my right side and hooks up to a chemo pump. It resembles a giant iPod and fits inside a black satchel with a strap on it. I have to wear it on my shoulder 24/7 and be careful not to tangle up the tubes when I sleep at night. Inside the pump is a "cassette" which houses the chemo medicine in a small plastic pouch. It is a 100mL reservoir and the pump automatically delivers about 14mL of chemo into my bloodstream every 24 hours. When the medicine is pumped, it makes a camera shutter sound which I've learned to become oblivious to. Every Tuesday, I go into the oncologist's office and they switch out the empty cassette for a new one for the next week. I'm not expected to lose a lot of hair since the chemo is a low continuous dose over a long period of time, and the radiation therapy is targeting my lower body instead. But I was thinking how funny it would be if I ended up getting a wig made of my own donated hair......
Thursday, June 5, 2008
Cancer Awareness & Survivor Stories
Dear Friends & Family,
There are many of you out there who have been touched by cancer through a family member or who are cancer survivors yourselves. Please e-mail me at dilebob@yahoo.com to share your story, and let me know if you want to share your story with a wider audience. I can keep your name anonymous if you wish. Please, remember to take good care of yourselves!
From the American Cancer Society website: http://www.cancer.org/docroot/home/index.asp
Who Gets Cancer?
Over one million people get cancer each year. Approximately one out of every two American men and one out of every three American women will have some type of cancer at some point during their lifetime. Anyone can get cancer at any age; however, about 77% of all cancers are diagnosed in people age of 55 and older. Although cancer occurs in Americans of all racial and ethnic groups, the rate of cancer occurrence (called the incidence rate) varies from group to group.
Today, millions of people are living with cancer or have been cured of the disease. The sooner a cancer is found and the sooner treatment begins, the better a patient's chances are of a cure. That's why early detection of cancer is such an important weapon in the fight against cancer.
There are many of you out there who have been touched by cancer through a family member or who are cancer survivors yourselves. Please e-mail me at dilebob@yahoo.com to share your story, and let me know if you want to share your story with a wider audience. I can keep your name anonymous if you wish. Please, remember to take good care of yourselves!
From the American Cancer Society website: http://www.cancer.org/docroot/home/index.asp
Who Gets Cancer?
Over one million people get cancer each year. Approximately one out of every two American men and one out of every three American women will have some type of cancer at some point during their lifetime. Anyone can get cancer at any age; however, about 77% of all cancers are diagnosed in people age of 55 and older. Although cancer occurs in Americans of all racial and ethnic groups, the rate of cancer occurrence (called the incidence rate) varies from group to group.
Today, millions of people are living with cancer or have been cured of the disease. The sooner a cancer is found and the sooner treatment begins, the better a patient's chances are of a cure. That's why early detection of cancer is such an important weapon in the fight against cancer.
Wednesday, June 4, 2008
The Giant Kitchen-Aid
Today's treatment was a bit of a disaster. Lucky for me, my sister Nina came with me to see the chaos unfold. She offered to drive me to my radiation appointment today since I was still a little sore & groggy from my surgery yesterday. Unfortunately, due to some "technical difficulties" with the radiation machines, we had to wait for almost 2 hours before I could get into the treatment room. Because I'm being treated for a 4cm tumor, the treatment field is very precise and the radiation machines are calibrated specifically for my body. I have 3 tiny dots that were actually tattooed on my hips and my backside so that they can line me up exactly the same way each time. Nina remarked right away that the machine looked like a giant Kitchen-Aid mixer without the bowl. Are you visualizing this? As it were, I have to lie down on a long table over a "belly board" which allows my tummy to drop into the opening so that gravity will help pull my healthy organs away from the treatment site. The idea is to minimize collateral damage to other organs from the radiation. They also told me I have to arrive with a full bladder which further helps to distend my bowels away from the radation field. So, I'm lying on my belly, with a fresh & still painful portacath surgery scar on my chest, full bladder, totally uncomfortable, but having to hold absolutely still so that the dots are lined up on the machine. After about 10 minutes, the tech comes in and says that they weren't able to take the films or start the radiation beams due to the previously mentioned technical difficulties. They switched me to another machine, same process, and still no luck because the software has a safeguard which protects the system from running duplicate treatments for the same patient profile in any given day. The techs were mortified and so apologetic, so I couldn't get upset with them. But the treatment didn't happen today. Only 2 days into my regimen and it was a total bust already. I didn't care-- I really had to pee......We'll try again tomorrow.
Tuesday, June 3, 2008
It Finally Sinks In
First day of treatment....it finally sinks in. Long day today. Had to have a portacath installed in my upper chest. The port is a small medical device that they can implant under your skin. It has a catheter that goes into your vein and a septum that can be used to inject drugs or draw blood without continuously pricking you with a needle. I had one installed for the purpose of receiving my chemo medicine, which will be hooked up through the port on a continuous pump, 24/7. A nurse came in and showed me what it was and how it works. I was amused to find that it is made of an irridescent hot pink titanium, and I told the nurse so. Her dry response was- it will be under your skin and no one will notice what color it is. But it's larger and heavier than you would think, even though I was told that I have the raciest new model available. Since I would be sedated for the semi-surgical procedure, I was not allowed to drive myself today and my awesome sister-in-law, Toni, came up in the driving rain from Lake Stevens to haul me around to my appointments in Bellevue. She's pretty much the best sister-in-law ever, and I'll be sure to remind my brother often, heh.
The doctor who performed the surgery is named Dr. Frantz Pierre-Jerome. Based on his name alone, I was expecting a tall, blond, blue-eyed man of Germanic descent, but instead he was a quite handsome African-American man with just an interesting name. The nurses referred to him as "PJ" when he wasn't in the room. He performed the surgery without a hitch and they told me that I woke up from the anesthetic and calmly announced, "I'm awake" before they had finished. The nurse asked me if I remembered saying that, and I said, "Nope!" I was a little loopy-dee-loo from the sedation and didn't quite come out of that cloud until later in the evening when it finally wore off. Dr. Pierre-Jerome told me that my oncologist, Dr. Kathryn Crossland, is the doctor of the doctors- so when doctors or their families get cancer, she's the one who treats them. Is that a ringing endorsement or what? It also turns out that my radiation oncologist, Dr. Eric Taylor, knows Winston's dad, who was the head surgeon at Virginina Mason before he retired, and he worked closely with his own dad, Dr. Willis Taylor. I have a great medical team, so I'm staying cautiously optimistic because I'm in good hands, apparently.
I heard from a few good friends today and saw some comments on the blog, so thank you for your well-wishes! I hope you can back for visits and updates. This blog kind of my cancer "diary" so that everyone can stay updated without me or my sister explaining the treatment progress ad nauseum. If I make it through, it will be a nifty little souvenir of my survivor experience. If I don't, then all of you (and Rowan & Spencer) will be able to know and understand exactly what happened to me, unlike us with our mom. Sometimes, I feel sharing this knowledge with people is strange and burdensome and I shouldn't be doing it. I don't want to make anyone uncomfortable or obligated. But I also feel that I am choosing the right people to tell. I would rather have my friends stand up for me while I'm around and while they still have an opportunity to than to have a whole room of friends at my funeral, you know? Love you all!
The doctor who performed the surgery is named Dr. Frantz Pierre-Jerome. Based on his name alone, I was expecting a tall, blond, blue-eyed man of Germanic descent, but instead he was a quite handsome African-American man with just an interesting name. The nurses referred to him as "PJ" when he wasn't in the room. He performed the surgery without a hitch and they told me that I woke up from the anesthetic and calmly announced, "I'm awake" before they had finished. The nurse asked me if I remembered saying that, and I said, "Nope!" I was a little loopy-dee-loo from the sedation and didn't quite come out of that cloud until later in the evening when it finally wore off. Dr. Pierre-Jerome told me that my oncologist, Dr. Kathryn Crossland, is the doctor of the doctors- so when doctors or their families get cancer, she's the one who treats them. Is that a ringing endorsement or what? It also turns out that my radiation oncologist, Dr. Eric Taylor, knows Winston's dad, who was the head surgeon at Virginina Mason before he retired, and he worked closely with his own dad, Dr. Willis Taylor. I have a great medical team, so I'm staying cautiously optimistic because I'm in good hands, apparently.
I heard from a few good friends today and saw some comments on the blog, so thank you for your well-wishes! I hope you can back for visits and updates. This blog kind of my cancer "diary" so that everyone can stay updated without me or my sister explaining the treatment progress ad nauseum. If I make it through, it will be a nifty little souvenir of my survivor experience. If I don't, then all of you (and Rowan & Spencer) will be able to know and understand exactly what happened to me, unlike us with our mom. Sometimes, I feel sharing this knowledge with people is strange and burdensome and I shouldn't be doing it. I don't want to make anyone uncomfortable or obligated. But I also feel that I am choosing the right people to tell. I would rather have my friends stand up for me while I'm around and while they still have an opportunity to than to have a whole room of friends at my funeral, you know? Love you all!
Subscribe to:
Posts (Atom)
