Scanxiety. noun. 1 a state of uneasiness and worry about the results of a future scan or test. 2 a feeling of being powerless and unable to cope with threatening events, like scans and blood tests scanxious adj.
This is my state of being this fine weekend. It crept up on me slowly and I did not recognize it at first. I have been vaguely unsettled. I am unable to focus and struggle to comprehend what I read. I find television annoying. (Now, some of you will say "duh" but I heart my shows) I have taken to starting to watch a show, cannot settle, so I pick up my crochet hook and start working on a project, any project. The noise from the tv soon interferes with my concentration, so I eventually mute the sound. I work for hours, often until 2am or so. When I sleep, I dream my recurring pharmacy dream. In this dream, people keep dropping off fistfuls of prescriptions to be filled until I am overwhelmed. I wake up stressed and tired. This morning, I got the automated phone call to remind me of my appointment with my oncologist next week. Ah, there it is. I am scanxious about next week.
Scanxiety is common among cancer survivors. These scans and blood tests hold the key to our futures. Will we get a good result and a free pass for living for a few months? Or will we get a result that requires action, like more surgery or more chemo? These results define our futures. My cancer surveillance requires check-ins every 3 months, so my scanxiety peaks every 3 months or so.
So....I will have my blood drawn on Monday for my CA-125 level. I will try to forget about it on Tuesday. I will have my power port flushed on Wednesday morning and visit with my doctor in the afternoon. He will examine me (read poke and palpate) and tell me the results of my blood test. And then I will know what to do for the next 3 months. Until then, I hold my breath.........
Saturday, October 26, 2013
Monday, September 30, 2013
Setback, again
Today, many thoughts and feelings are swirling around in this head o'mine. Heck, not just today but the last few weeks. One will circle and land for awhile, almost long enough for me to get a handle on it, then its gone, only to be replaced by the next. One theme, that seems to be revisiting again and again, is "how do I live with this thing called cancer in my body?"
I nicknamed my cancer Clive. That made it easier to talk about. I could say Clive when my mouth stumbled around the word cancer. I garnered strength when my friend said "kick Clive to the curb". We celebrated when Clive apparently was kicked to the curb. We told him he wasn't welcome. We thought he was gone. But Clive isn't gone. We may have kicked him to the curb, but he just moved down the street a little bit. After treating this first recurrence for several months, my doctor said that he doesn't think he can cure my cancer. Because Clive has shrunk to a very small hard little nugget and the side effects of the chemo treatments were piling up, we stopped treatment. I was happy about this, elated to not be subjected to those drugs, and accepting of Clive's inert presence. That was the way I felt that day and many other days. Some other days, I am panicked by this setback. Other days I am angry. Some days I am struck by the grief all over again. On a good day, I go about my life.
One day, I was going about my life when I read about a promising new drug in development for recurrent ovarian cancer. I had a burst of excitement and hope. As I eagerly read further, I see that the trial is not for ovarian cancer. This drug is for someone else, not for me. My hopes were dashed, which subsequently ignited a little fuse of anger. Why do I get the advanced metastatic incurable cancer? Each time my hopes are raised then crashed again, it reopens the wound of grief, of loss. It's an emotional setback every time. I read ahead to the end of the article and saw that this promising new drug adds 2.3 months to survival time. 2.3 months?!?!? All this hubbub over 2 months? It's only 2 months, someone else can have those 2 months. That's how I rationalized and closed up my grief so I can live my life.
One day, I was going about my life when I felt the familiar gurgle of angry bowels. The artifacts from my cancer treatments affect my everyday life and it will always be so. I have had most of my small bowel and a large portion on large bowel removed over several surgeries for my cancer. My guts are precariously balanced and any little unknown thing can wreak havoc. On this day, I was with my friends enjoying the autumn sunshine, good food and live music. I had forgotten about Clive. Until I was reminded by the gurgle. I made it home without any unfortunate events, but awoke later that night in a cold wet mess. I was afraid to go back to sleep. The renewed grief that my body will never be the same was overwhelming. I angrily ripped the sheets from the bed, found the package of Depends in the closet, and cried myself back to sleep. In the morning. I finished the laundry, remade the bed and went back to living my life.
One week, I was going about my life when I met some other women who share my diagnosis. This is rare, because ovarian cancer is relatively rare, about 1 in 70. I met a whole gaggle of women in Goldcreek, Montana at Camp Mak-a-Dream for a weekend retreat for ovarian cancer survivors. I met women at every stage of treatment. These women all have setbacks. And yet, they do amazing things. They travel, they start foundations, they volunteer, they raise families, they live life. I benefited greatly from seeing these things. I saw survivors with 5+, 12 and 20 years experience. I stared with admiration. They shared their wisdom with me and I collected it up with both arms. I saw what I could be. I saw that setbacks are temporary. We agreed that yes, cancer sucks. I saw how they lived their lives and realized that I could do that too. I saw that I am not alone. That's why I share my own experiences. Someone, somewhere, someday may need to hear the sometimes unsavory details of my life to feel better about her own life, to see that she is not alone. In the meantime, I'll go back to living my life.
I nicknamed my cancer Clive. That made it easier to talk about. I could say Clive when my mouth stumbled around the word cancer. I garnered strength when my friend said "kick Clive to the curb". We celebrated when Clive apparently was kicked to the curb. We told him he wasn't welcome. We thought he was gone. But Clive isn't gone. We may have kicked him to the curb, but he just moved down the street a little bit. After treating this first recurrence for several months, my doctor said that he doesn't think he can cure my cancer. Because Clive has shrunk to a very small hard little nugget and the side effects of the chemo treatments were piling up, we stopped treatment. I was happy about this, elated to not be subjected to those drugs, and accepting of Clive's inert presence. That was the way I felt that day and many other days. Some other days, I am panicked by this setback. Other days I am angry. Some days I am struck by the grief all over again. On a good day, I go about my life.
One day, I was going about my life when I read about a promising new drug in development for recurrent ovarian cancer. I had a burst of excitement and hope. As I eagerly read further, I see that the trial is not for ovarian cancer. This drug is for someone else, not for me. My hopes were dashed, which subsequently ignited a little fuse of anger. Why do I get the advanced metastatic incurable cancer? Each time my hopes are raised then crashed again, it reopens the wound of grief, of loss. It's an emotional setback every time. I read ahead to the end of the article and saw that this promising new drug adds 2.3 months to survival time. 2.3 months?!?!? All this hubbub over 2 months? It's only 2 months, someone else can have those 2 months. That's how I rationalized and closed up my grief so I can live my life.
One day, I was going about my life when I felt the familiar gurgle of angry bowels. The artifacts from my cancer treatments affect my everyday life and it will always be so. I have had most of my small bowel and a large portion on large bowel removed over several surgeries for my cancer. My guts are precariously balanced and any little unknown thing can wreak havoc. On this day, I was with my friends enjoying the autumn sunshine, good food and live music. I had forgotten about Clive. Until I was reminded by the gurgle. I made it home without any unfortunate events, but awoke later that night in a cold wet mess. I was afraid to go back to sleep. The renewed grief that my body will never be the same was overwhelming. I angrily ripped the sheets from the bed, found the package of Depends in the closet, and cried myself back to sleep. In the morning. I finished the laundry, remade the bed and went back to living my life.
One week, I was going about my life when I met some other women who share my diagnosis. This is rare, because ovarian cancer is relatively rare, about 1 in 70. I met a whole gaggle of women in Goldcreek, Montana at Camp Mak-a-Dream for a weekend retreat for ovarian cancer survivors. I met women at every stage of treatment. These women all have setbacks. And yet, they do amazing things. They travel, they start foundations, they volunteer, they raise families, they live life. I benefited greatly from seeing these things. I saw survivors with 5+, 12 and 20 years experience. I stared with admiration. They shared their wisdom with me and I collected it up with both arms. I saw what I could be. I saw that setbacks are temporary. We agreed that yes, cancer sucks. I saw how they lived their lives and realized that I could do that too. I saw that I am not alone. That's why I share my own experiences. Someone, somewhere, someday may need to hear the sometimes unsavory details of my life to feel better about her own life, to see that she is not alone. In the meantime, I'll go back to living my life.
Sunday, September 1, 2013
September
September is my birthday month! Yay! I'm going to be 50! Yay! A friend asked me how I felt about being 50. Now, I know that many people are upset over being half-a-century old, mainly because 50 is, well, old. I know that nobody wants to be old. That is nobody except me, I want to be old. I have always wanted to be that kooky, funky, yet hip, old lady. I am starting early because my time frame has shifted. I always thought I would live to be 88 and planned my life as such. However, as you know, things have changed a little bit. I get to be kooky, funky, yet hip, now. I remember a time when I didn't know if I would live this long. I did! I am 50! Let the kooky, funky, yet hip begin....
But before all that begins, I feel the need to share this....
Ovarian cancer is relatively rare. About 1 in 70 will develop ovarian cancer. In comparison, about 1 in 8 women will develop breast cancer. Despite it's rarity, ovarian cancer is deadly. Of those diagnosed, about 30% will be alive 5 years later. In comparison, of those diagnosed with breast cancer, about 85-90% will survive those 5 years. Ovarian cancer has a high fatality rate probably because the majority of cases are not found until the disease has spread throughout the abdomen. This is Stage 3 cancer and most of us, about 80%, are diagnosed at this stage or later, Stage 4. There is no Stage 5. The answer seems simple, find the cancer earlier.
Ovarian cancer has long been called the "silent killer", presumably because it has no symptoms until its too late. There is no current screening test. I am here to tell you that there are symptoms and signs. Ovarian cancer is not silent, but it whispers, so you have to pay attention. Pay attention to these things:
1. Bloating
2. Pelvic or abdominal pain
3. Difficulty eating, feeling full quickly
4. Urinary changes, urgency and/or pressure in the absence of infection.
5. Fatigue
These symptoms could happen to any of us on a bad day. The key is frequency. If you have these symptoms almost daily for more than 14 days each month, please see your doctor. Ask your doctor to tell you why you do not have ovarian cancer. Ask for a pelvic/rectal exam, a blood test called CA-125, and a trans vaginal ultrasound if warranted.
Be your own advocate. This disease can be curable if found early. Most of us living with ovarian cancer would tell you that our own conditions worsened as we slogged our way through the medical system looking for a diagnosis. Most of us did not push for tests or answers. We did not know that we were dealing with ovarian cancer. We did not know the symptoms. This is the real reason why ovarian cancer is a silent killer, nobody talks about it. I'm talking about it. I'm telling you my experiences so that you don't have to repeat those same experiences. I did not know. Now you know. Use your knowledge. Tell a sister, tell a friend, tell a daughter, tell a mother, tell every woman!
For further information, please visit ovarian.org
Friday, July 12, 2013
Get Busy Living
LATEST NEWS: You might remember that I was looking forward to the end of chemo. Well, doctor called on Wednesday night and said he was cancelling my chemo. That was easy! Why now? He emphasized some key points with me.
1. This cancer cannot be cured.
2. This cancer has been beaten down. I have had an excellent clinical response to treatment, my scan is good and my CA-125 marker is as low as ever.
3. Myelodysplasia is bad. You might remember all the delays and house arrests I had during these last cycles. That's because the side effects of chemo are cumulative and pretty much don't go away. My bone marrow is suffering and cannot keep up with the demands for RBCs, WBCs and platelets. Doctor wants to preserve as much function as possible while also giving me options for the future. If my bone marrow is blasted, I will not have the same treatment options in the future. I will need treatment in the future at some point.
4. So, if we stop now when I have good response and good test results, I can restore my health and my life and also maintain future options.
So, Yay! chemo is over for now. I am giddy! So, pardon me while I get busy living. Stay tuned....
1. This cancer cannot be cured.
2. This cancer has been beaten down. I have had an excellent clinical response to treatment, my scan is good and my CA-125 marker is as low as ever.
3. Myelodysplasia is bad. You might remember all the delays and house arrests I had during these last cycles. That's because the side effects of chemo are cumulative and pretty much don't go away. My bone marrow is suffering and cannot keep up with the demands for RBCs, WBCs and platelets. Doctor wants to preserve as much function as possible while also giving me options for the future. If my bone marrow is blasted, I will not have the same treatment options in the future. I will need treatment in the future at some point.
4. So, if we stop now when I have good response and good test results, I can restore my health and my life and also maintain future options.
So, Yay! chemo is over for now. I am giddy! So, pardon me while I get busy living. Stay tuned....
Tuesday, July 9, 2013
Hope through Reiki
My health center, the Institute for Cancer and Center of Hope, offers Reiki sessions at no charge for those in cancer treatment. Reiki is a Japanese spiritual practice of hands-on healing that transfers universal energy, known as chi, through the palms of the practitioner to the body of the patient in the belief that such energy can promote healing and equilibrium. (Don't be distracted by the terminology, which in this case is eastern Buddhist. If you want western Christian terminology, Reiki is where a healer lays his hands on a believer and heals him through the power and spirit of God. Same thing.) I have had 2 sessions and have an appointment this afternoon for my third.
At the least, my sessions have provided an hour of relaxation and distraction from my disease. At the most, my sessions have given me moments of inspiration, flashes of understanding, where the meaning of the whole is suddenly clear. These moments are fleeting, but unforgettable. My written words will do little justice to the power of the moment, in the same way a photograph cannot wholly convey an experience. I will try, none the less.
I seek healing. Notice I do not say "cure". Healing is about my body and my spirit. The body and spirit are complexly intertwined and feed each other. Physical pain can damage your spirit and spiritual pain can damage your body. Think about the last time you had a toothache and how grumpy you were because of the pain. It's that simple. Just as I would seek to treat the pain in my body with analgesics, I seek to treat the pain in my spirit, to heal my spirit in order to bring balance into my body (and heal my body) simultaneously. It's simple, but not easy.
My sessions have helped me realize that I have some anger hiding in there. Anger at being sick, anger at my setback, anger at myself for letting myself slip back. How silly, I am mad at myself for letting me get cancer, again. Now that I can see that, I can acknowledge it and let go of anger's damaging effects. I have been depressed, sulky, ungracious and miserable these past few months. These are all outward expressions of my anger, I am acting out. My belly has been miserable too. I have painful cramping, sudden diarrhea, excess acid, general indigestion. I now chose to let go of my anger. When I notice my angry behavior, I can stop. I can change my focus to my target and find some compassion. My selfish anger can go. I can be done with that and I can heal. I can heal. Imagine that.
P.S. Imagining healing restores my hope. I didn't recognize that my hope was lost until this moment. Wow. My heart just might burst open. Um, thanks for listening to my breakthrough.
At the least, my sessions have provided an hour of relaxation and distraction from my disease. At the most, my sessions have given me moments of inspiration, flashes of understanding, where the meaning of the whole is suddenly clear. These moments are fleeting, but unforgettable. My written words will do little justice to the power of the moment, in the same way a photograph cannot wholly convey an experience. I will try, none the less.
I seek healing. Notice I do not say "cure". Healing is about my body and my spirit. The body and spirit are complexly intertwined and feed each other. Physical pain can damage your spirit and spiritual pain can damage your body. Think about the last time you had a toothache and how grumpy you were because of the pain. It's that simple. Just as I would seek to treat the pain in my body with analgesics, I seek to treat the pain in my spirit, to heal my spirit in order to bring balance into my body (and heal my body) simultaneously. It's simple, but not easy.
My sessions have helped me realize that I have some anger hiding in there. Anger at being sick, anger at my setback, anger at myself for letting myself slip back. How silly, I am mad at myself for letting me get cancer, again. Now that I can see that, I can acknowledge it and let go of anger's damaging effects. I have been depressed, sulky, ungracious and miserable these past few months. These are all outward expressions of my anger, I am acting out. My belly has been miserable too. I have painful cramping, sudden diarrhea, excess acid, general indigestion. I now chose to let go of my anger. When I notice my angry behavior, I can stop. I can change my focus to my target and find some compassion. My selfish anger can go. I can be done with that and I can heal. I can heal. Imagine that.
P.S. Imagining healing restores my hope. I didn't recognize that my hope was lost until this moment. Wow. My heart just might burst open. Um, thanks for listening to my breakthrough.
Sunday, June 30, 2013
Done, But Not Yet Finished.....
I am done with treatment.
I am not finished, according to my doctor and the plan, but I am just done. I want to be finished. I am bored with the details of treatment, like labwork. I am done, so I forget my labwork each week. The idle chit chat with the lab tech each week is just boring. I am so tired of smiling each week and making up something interesting to talk about. I can usually come up with a good lunch story, as in "I think I will go to lunch today at _________." Maybe I will go to lunch but probably not. I am too wiped out and will probably go home and sit on the couch with the laptop. Like I said, boring.
I am wiped out because I have had so much chemotherapy. This is my third series of treatment. I started again in February because of my first recurrence of ovarian cancer. I am getting the same drugs I used the first time. This is good because that means I have a response to these drugs, I am platinum-sensitive. This is a good thing for my prognosis. This is a bad thing for my body and the side effects of these drugs, paclitaxel and carboplatin. The taxane drug, the paclitaxel, causes neuropathy, numbness and pain in my fingers and toes. The platinum drug, the carboplatin, messes with my blood chemistry and bone marrow. I have constant electrolyte issues that require buckets of anti-diarrhea medicines and infusions. I have constant blood counts issues, low white blood cells, then low platelets, and always anemia from low red blood cells. This affects the activities I am allowed to participate in. I have to avoid other people (germs), knives (I might cut myself), bikes (I might fall and injure myself), fresh fruit (germs), uncooked food (germs), flossing (bleeding)....and the list goes on. It is no longer interesting to me to even explain this. I hear blah, blah, blah when I talk. The topic never changes.
I am tired of being bald in public. I really like when I can wear a big hat and sunglasses and hide. If I cannot hide, I see the looks at my head. I ignore the looks. I walk the other way. I am tired of answering the questions.
I am done with cancer. I want to be able to tell you about the fun things I am doing. I am not doing fun things. I am housebound with low white blood cells this week. I could go out, if I wear a mask. Great, a bald girl wearing a mask. How fun is that?
I am done with cancer, but cancer is not yet done with me. I will keep my appointments and wait impatiently until this series of treatments is finished. I can't wait.
I am not finished, according to my doctor and the plan, but I am just done. I want to be finished. I am bored with the details of treatment, like labwork. I am done, so I forget my labwork each week. The idle chit chat with the lab tech each week is just boring. I am so tired of smiling each week and making up something interesting to talk about. I can usually come up with a good lunch story, as in "I think I will go to lunch today at _________." Maybe I will go to lunch but probably not. I am too wiped out and will probably go home and sit on the couch with the laptop. Like I said, boring.
I am wiped out because I have had so much chemotherapy. This is my third series of treatment. I started again in February because of my first recurrence of ovarian cancer. I am getting the same drugs I used the first time. This is good because that means I have a response to these drugs, I am platinum-sensitive. This is a good thing for my prognosis. This is a bad thing for my body and the side effects of these drugs, paclitaxel and carboplatin. The taxane drug, the paclitaxel, causes neuropathy, numbness and pain in my fingers and toes. The platinum drug, the carboplatin, messes with my blood chemistry and bone marrow. I have constant electrolyte issues that require buckets of anti-diarrhea medicines and infusions. I have constant blood counts issues, low white blood cells, then low platelets, and always anemia from low red blood cells. This affects the activities I am allowed to participate in. I have to avoid other people (germs), knives (I might cut myself), bikes (I might fall and injure myself), fresh fruit (germs), uncooked food (germs), flossing (bleeding)....and the list goes on. It is no longer interesting to me to even explain this. I hear blah, blah, blah when I talk. The topic never changes.
I am tired of being bald in public. I really like when I can wear a big hat and sunglasses and hide. If I cannot hide, I see the looks at my head. I ignore the looks. I walk the other way. I am tired of answering the questions.
I am done with cancer. I want to be able to tell you about the fun things I am doing. I am not doing fun things. I am housebound with low white blood cells this week. I could go out, if I wear a mask. Great, a bald girl wearing a mask. How fun is that?
I am done with cancer, but cancer is not yet done with me. I will keep my appointments and wait impatiently until this series of treatments is finished. I can't wait.
Thursday, March 14, 2013
Slash-n-Burn
I can't shake the waking remnants of the dream from a few days ago. The sleep was drug fueled and sporadic, hardly restful sleep. I drifted to awareness with a vague dread, a cautious hopefulness that maybe today I would be myself, not the steroid-raging shell of exhausted alertness that stared me down in the mirror. I can't look at that woman in the mirror. Her eyes are spent, yet intense, boring into my own eyes, demanding something, anything other than the status quo.
I woke with the absolute surety that my midsection was a pile of embers, a pile of charred bits of black. A deep pile that would stick to my fingers if I touched my belly. It smelled. I so wanted to touch it and verify that my belly had indeed been incinerated. I did not touch it. It was just a dream, after all.
But it is not just a dream. I yearn to have the landscape of my belly be laid clean. I believe that the way to healing is through treatment. I spend hours visualizing my belly as a pink happy place, with shiny healthy cells. This a step further down the path. I have to push forward through the tangled undergrowth and clean it out. I can visualize the pink healthfulness there, made possible by the passing devastation of chemotherapy.
I woke with the absolute surety that my midsection was a pile of embers, a pile of charred bits of black. A deep pile that would stick to my fingers if I touched my belly. It smelled. I so wanted to touch it and verify that my belly had indeed been incinerated. I did not touch it. It was just a dream, after all.
But it is not just a dream. I yearn to have the landscape of my belly be laid clean. I believe that the way to healing is through treatment. I spend hours visualizing my belly as a pink happy place, with shiny healthy cells. This a step further down the path. I have to push forward through the tangled undergrowth and clean it out. I can visualize the pink healthfulness there, made possible by the passing devastation of chemotherapy.
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