Thank you for reading, commenting and emailing me. I am deeply touched by your compassionate messages of support. You have helped me more than you can know.
These writings have been therapeutic for me. Here's how I benefit. When I'm anxious or emotional I write down the thought that is persisting. The act of writing forces me to stop everyting else and focus. It feels good then to flesh out the thought. It might take 15 minutes or as long as a couple of hours to finish. When I'm done with a blog entry I'm no longer preoccupied with the feeling and can usually let it go.
Hearing from people who can relate to what I've said helps me in another way. It alleviates my fear that my thoughts are abnormal or even worse, hysterical.
Friday, February 29, 2008
Thursday, February 28, 2008
Picture Perfect
For so long the goal was picture perfect because I believed doing less would be a disappointment. I didn’t deserve full credit if things weren’t done correctly. I needed to work hard and not be lazy. Admitting to slacking off or selfishly spending money on myself, for something I did not need, would diminish other’s opinions of me. Many times I lied, to cover for doing such self-serving things. It wasn’t okay to disappoint people.
In turn, the opposite was also true. If I worked hard and excelled, was responsible and didn’t complain or disappoint, then awful things would not happen. I was protecting myself, those I love and my future. The formula had worked all through my childhood and adulthood. It was insurance to keep everyone safe.
Hearing the words ‘you have cancer’ shattered the façade in a heartless way. The destruction of my false sense of security was swift and cruel. I didn’t experience denial or sadness. Only overwhelming fear. Fear of not being able to protect Tanner from the pain of losing a parent too young. Fear of suffering and losing my health. I was forced to accept that my assumption I would live to an old age was also a façade. Cancer was relentless in reminding me that I could not prevent bad things through self control. Each day since hearing the words I have given up more control. I have given up more assumptions and the false security.
After submitting to the terror and grieving for my long-held dreams, I began the process of rebuilding courage, one frightening experience at a time. I still have days where fatigue and anxiety draw me back into darkness and doubt, but they happen less frequently as time goes on. These days I don’t think very often of the future and am less burdened because I no longer follow my safe rituals as before. I can see and feel things with innocence again, as I did as a child. I am grateful for this second chance to feel contentedness.
In turn, the opposite was also true. If I worked hard and excelled, was responsible and didn’t complain or disappoint, then awful things would not happen. I was protecting myself, those I love and my future. The formula had worked all through my childhood and adulthood. It was insurance to keep everyone safe.
Hearing the words ‘you have cancer’ shattered the façade in a heartless way. The destruction of my false sense of security was swift and cruel. I didn’t experience denial or sadness. Only overwhelming fear. Fear of not being able to protect Tanner from the pain of losing a parent too young. Fear of suffering and losing my health. I was forced to accept that my assumption I would live to an old age was also a façade. Cancer was relentless in reminding me that I could not prevent bad things through self control. Each day since hearing the words I have given up more control. I have given up more assumptions and the false security.
After submitting to the terror and grieving for my long-held dreams, I began the process of rebuilding courage, one frightening experience at a time. I still have days where fatigue and anxiety draw me back into darkness and doubt, but they happen less frequently as time goes on. These days I don’t think very often of the future and am less burdened because I no longer follow my safe rituals as before. I can see and feel things with innocence again, as I did as a child. I am grateful for this second chance to feel contentedness.
Tuesday, February 26, 2008
Back to Work
Good news. I passed my Pharmacy Tech certification test and will be starting a part time job at the new Target pharmacy here in Missoula soon. Its an ideal job for right now. It will allow me to gain experience and get some structure back in my days. The limited hours (4 hour shifts) will be doable when I'm dragging. I called off an interview yesterday with Community Medical Center for a ten hour shift position. I was overzealous applying for that one.
Also got a call from Christine, my chemo nurse, who said vitamin levels in my blood are low so they are prescribing higher doses of supplements. Could be part of why my mojo is low.
After a good night of rest my spirit is up. I've got to learn how to ride out the slumps. I was going to add, and not fret and overanalyze, but I'm not sure I can do that. It just happens. It sucks me in.
Also got a call from Christine, my chemo nurse, who said vitamin levels in my blood are low so they are prescribing higher doses of supplements. Could be part of why my mojo is low.
After a good night of rest my spirit is up. I've got to learn how to ride out the slumps. I was going to add, and not fret and overanalyze, but I'm not sure I can do that. It just happens. It sucks me in.
Monday, February 25, 2008
Thoughts and Doubts
Recovery from the 4th chemo treatment has been going well. I hesitate to use the word well though. It doesn't ring true. I will restate. Recovery is going as well as can be expected.
How do I feel? Unwell.
When you evaluate how you feel while undergoing chemo, the definitions of the rating levels change.
pretty good means I am not overtly suffering right now and I'm feeling relief at this moment
I'm ok means I am feeling wretched but I don't want to complain anymore
I'm tired means I am likely both emotionally and physically drained
I need to lay down means I can't cope and need the relief and escape of sleep
I am feeling ok. But I am feeling unwell. The best way to describe how I feel is poisoned. Ailing, broken down, weak and so unlike my old self. I'm considering changing my chemo plan and not doing the last two treatments. I'm distressed about the long term harm of the chemo treatments. I am concerned that I may be being overtreated and that more chemo will make me weaker to fight cancer in the future.
I recognize that chemo fatigue may be influencing my thought process. I won't make an irrational decision. I will talk with Dr. Schmidt and we together will come to a decision. Right now I am wishing for an absolute. A guarantee. No one can give me that.
How do I feel? Unwell.
When you evaluate how you feel while undergoing chemo, the definitions of the rating levels change.
pretty good means I am not overtly suffering right now and I'm feeling relief at this moment
I'm ok means I am feeling wretched but I don't want to complain anymore
I'm tired means I am likely both emotionally and physically drained
I need to lay down means I can't cope and need the relief and escape of sleep
I am feeling ok. But I am feeling unwell. The best way to describe how I feel is poisoned. Ailing, broken down, weak and so unlike my old self. I'm considering changing my chemo plan and not doing the last two treatments. I'm distressed about the long term harm of the chemo treatments. I am concerned that I may be being overtreated and that more chemo will make me weaker to fight cancer in the future.
I recognize that chemo fatigue may be influencing my thought process. I won't make an irrational decision. I will talk with Dr. Schmidt and we together will come to a decision. Right now I am wishing for an absolute. A guarantee. No one can give me that.
Saturday, February 23, 2008
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Thursday, February 21, 2008
If You Gotta Get Chemo This Is a Good Place
Chemo #4 was uneventful. John and Mom attended this triumphant event. I'm officially over halfway done with chemo. Its midnight now and I'm still buzzing from the Decadron steroid.
I was so happy that the IV went in on the first try that I told Christine that I love her.
Something else happened. Early this month I posted about a young mother whose breast cancer has metastisized to her liver (See Toxic Makeover). I cried with her at my second treatment and was sorrowful that I might not see her again.
I was happy to see her walk in the treatment room today. She looked okay. A liver/spleen MRI and bone and brain scans were ordered for her for tomorrow. How does a person prepare themselves to hear the results? She's been on the receiving end of many test results before, but can it become any less difficult? Especially now. I cannot make any sense of her grave situation and I am deeply saddened for her.
Wednesday, February 20, 2008
Chemo #4
My mom is coming this afternoon. She's going to treatment with me tomorrow. It will be fun to show her off to Dr. Schmidt, Christine (my chemo nurse) and the other patients I know. People who meet my mom comment that she is such a cheerful, sweet and unselfish person. And she is. She takes genuine interest in what people are saying. She empathizes. She is the hardest working person I know. Hardest working person I'll ever know. And I get her for 2 or 3 days! As soon as she arrives she'll scope out our house, looking for things that need attention. Last time she was here she did laundry, cleaned out our fridge, gas stove and all horizontal surfaces in the house. She grocery shops and cooks healthy satisfying meals that entice me to eat when I'd just as soon not. I'm prepared to be run over by a Mack truck upon waking Friday morning. Just hope he doesn't back up and hit me again, for fun. Tomorrow, following the blood draw and IV placement, will be a relative walk in the park. In fact because of the pre-treatment steroids I'll be feeling fine, energetic even. I'll stop by and clean out your basement or chop some wood.
Heres to killing rapidly dividing cells. Go Taxotere! Go Cytoxan! Thank you Neulasta, couldn't do it without you.
Tuesday, February 19, 2008
It
It had been a traumatic ordeal and on the final night at the hospital I lost my composure. I felt utterly defeated. My lack of control over the suffering the doctors, nurses and technicians were inflicting on me had reduced me to a terrified shell of myself. When my surgeon finally released me to go home I was elated. I knew I had a few days before I would be prodded again by him and I was relieved. What I wouldn’t learn until later was that I would need to return to him every few days to have blood aspirated from the left side of my chest which continued to bleed for a few weeks. Then the surgical drains that hung from my sides, which we emptied several times a day, would need to be pulled out. I was trembling each time I visited his office for another procedure. I was still traumatized and could not control the fear. Meanwhile I was weak and dizzy and I couldn’t identify with my former self. It was too painful to wear my mastectomy bra with the prosthetics. I was still losing weight, mostly muscle tone now, from lack of exercise.
I was very fearful of chemotherapy, which of course is natural. I kept visualizing the Russian spy who had been poisoned by radiation the year before. I thought of the horror stories everyone hears about severe suffering for days on end. I knew I was a few weeks away from losing my hair, eyelashes and eyebrows. I did not recognize my body in the mirror after I removed the steri-strip tape over the incisions on either side of my chest and abdomen. The red ugly scars were difficult to look at. So I didn’t very often.
I had only been remarried a few months and now I was becoming an It. Feeling vulnerable, I asked John to remember how I used to be. After I lost my hair, what would be left of me that could be considered feminine? When looking at my chest you could have be looking at a pre-teen girl. I could see all of my ribs, not just the bottom few. How could John not be repelled at the sight of me? At the very least, it would be understandable for him to avoid looking at me.
I was wrong. So very wrong. And I feel okay about myself now. John never flinched. In fact the way he looks at me has not changed at all. I only see love in his eyes.
Love conquers all.
I was very fearful of chemotherapy, which of course is natural. I kept visualizing the Russian spy who had been poisoned by radiation the year before. I thought of the horror stories everyone hears about severe suffering for days on end. I knew I was a few weeks away from losing my hair, eyelashes and eyebrows. I did not recognize my body in the mirror after I removed the steri-strip tape over the incisions on either side of my chest and abdomen. The red ugly scars were difficult to look at. So I didn’t very often.
I had only been remarried a few months and now I was becoming an It. Feeling vulnerable, I asked John to remember how I used to be. After I lost my hair, what would be left of me that could be considered feminine? When looking at my chest you could have be looking at a pre-teen girl. I could see all of my ribs, not just the bottom few. How could John not be repelled at the sight of me? At the very least, it would be understandable for him to avoid looking at me.
I was wrong. So very wrong. And I feel okay about myself now. John never flinched. In fact the way he looks at me has not changed at all. I only see love in his eyes.
Love conquers all.
Sunday, February 17, 2008
Side Effects
The fatigue is getting old. During the first six weeks after starting chemo I had fatigue in short bursts during the first few days after a treatment. The accumulation of chemo seems to be taking its toll however. I haven't been able to overcome fatigue the past two and a half weeks. After sleeping seven hours I can sleep another two a few hours later. Its obvious the additional rest is necessary because insomnia is now a thing of the past.
Last week I got a job offer for twenty hours a week as a pharmacy technician, starting early March. I think that is doable and it will in fact be a nice way to get some normalcy back. A few days ago I was notified of another job opening, at Community Medical Center for 4 ten hour shifts a week. The pay is much better at CMC so I have applied. I wonder though, if I get an offer for that job how I will be able to keep myself going for 10 hours at a time. I am also concerned about keeping mental clarity when fatigue sets in. No need to worry at this point however because I have not been offered the job.
Last week I got a job offer for twenty hours a week as a pharmacy technician, starting early March. I think that is doable and it will in fact be a nice way to get some normalcy back. A few days ago I was notified of another job opening, at Community Medical Center for 4 ten hour shifts a week. The pay is much better at CMC so I have applied. I wonder though, if I get an offer for that job how I will be able to keep myself going for 10 hours at a time. I am also concerned about keeping mental clarity when fatigue sets in. No need to worry at this point however because I have not been offered the job.
Friday, February 15, 2008
All Clear
I was at the hospital yesterday dropping off a job application and I decided to sneak in a week early for my 3 month chest x-ray. All clear! The swelling is finally subsiding from the left hand side of my chest and I had been a little concerned about a lump I was feeling. Now I know its likely just my rib. Heh Heh
I got a little taste of what it will be like in the future when I finish chemo and am not under constant care of my oncologist. I feel relatively safe now because I am continuously being questioned about any physical weirdness by a doctor. How will I quiet that little voice of worry when I am freed of the weekly consults?
Finding a new lump would be cause for having it checked out immediately. More ominous would be lasting aches in joints or bones which could signal a bone metastasis. Bloating or pain in the stomach could be a liver metastisis. A cough that won't go away or trouble breathing could be a lung metastisis. Or heaven forbid, a headache could be a brain metastasis. Any of these symptoms could be nothing at all or normal aging.
Recurrance happens most frequently during the first two years after treatment. After two years the recurrance rate drops. If you go ten years without recurrance the rate drops even more dramatically. A local recurrance is usually as treatable as the first occurance and could still produce a cure. A distant metastasis usually means a low chance of a cure with the purpose of treatment being an attempt to slow down the growth of the new tumor(s).
I am learning how to meditate now in hopes of controlling my fear of recurrance. The method I am trying is basically this. When thoughts are cycling over and over I try to step back and recognize that I am not my thoughts. I view the thoughts as if they are the antics of a small child. The brain is in the habit of repeatedly analyzing things that happened in the past and things that could happen in the future. If a person can focus purely on what is happening in the present moment it interrupts the cycle of useless worry. I am able to do this for a few seconds at a time now and feel a sense of peace. It feels very relaxing. Over time the peaceful periods will be longer.
Has anyone reading this been successful doing this sort of meditation? I would love to hear of your experience.
I got a little taste of what it will be like in the future when I finish chemo and am not under constant care of my oncologist. I feel relatively safe now because I am continuously being questioned about any physical weirdness by a doctor. How will I quiet that little voice of worry when I am freed of the weekly consults?
Finding a new lump would be cause for having it checked out immediately. More ominous would be lasting aches in joints or bones which could signal a bone metastasis. Bloating or pain in the stomach could be a liver metastisis. A cough that won't go away or trouble breathing could be a lung metastisis. Or heaven forbid, a headache could be a brain metastasis. Any of these symptoms could be nothing at all or normal aging.
Recurrance happens most frequently during the first two years after treatment. After two years the recurrance rate drops. If you go ten years without recurrance the rate drops even more dramatically. A local recurrance is usually as treatable as the first occurance and could still produce a cure. A distant metastasis usually means a low chance of a cure with the purpose of treatment being an attempt to slow down the growth of the new tumor(s).
I am learning how to meditate now in hopes of controlling my fear of recurrance. The method I am trying is basically this. When thoughts are cycling over and over I try to step back and recognize that I am not my thoughts. I view the thoughts as if they are the antics of a small child. The brain is in the habit of repeatedly analyzing things that happened in the past and things that could happen in the future. If a person can focus purely on what is happening in the present moment it interrupts the cycle of useless worry. I am able to do this for a few seconds at a time now and feel a sense of peace. It feels very relaxing. Over time the peaceful periods will be longer.
Has anyone reading this been successful doing this sort of meditation? I would love to hear of your experience.
Thursday, February 14, 2008
Fortunate
Before cancer I was deluding myself. For 20 years I found self worth in working and earning money. I never considered staying home to raise Tanner because I thought it was a luxury I was not deserving of. I rarely turned down more responsibility at work. Being viewed as competent and pleasing customers gave me brief feelings of worthiness. My assumption was that all of the hard work would pay off some day and then, finally then, I could relax and find peace and happiness. I would come home from work preoccupied, analyzing my failures. I needed a glass or two of wine to stop punishing myself. I was successful in building a career but as I look back now it had its cost. I shunned the people I love. Didn’t return phone calls. Let friendships whither while I self-medicated with wine, reading, tv, and mind-numbing exercise.
I had just quit my two decade career in IT, returning to school to study pharmacy 6 months ago. I couldn’t stifle the guilt of not being an earner. I was obsessed with guilt. But I would have a couple hours each day free of guilt. I would douse the guilt with wine.
Then bam, in the middle of fall semester, the shock of cancer. A funny thing happened when I heard the diagnosis. Something I have not admitted to anyone, including John. Sure, I was horrified and fearful, but I also felt relief. This overwhelming disease had given me the ultimate excuse for being a quitter. The guilt was gone and that felt good, very good.
Fast forward to today, my 3 month cancer anniversary. I don’t want to go back and change anything. I feel a freedom now to live doing the things I feel are important. Taking interest in my son Tanner’s video games. I never had the patience to do that before. When he asks me to come out and build a snow fort, I do it. Happily. I love Listening, really listening to my step son Quinn.
He is 7, at such a wonderful age and full of exciting imaginative stories. He feels things deeply and I love him for that. He cries when he is disappointed, fearful or scared. He leaps for joy in a funny Broadway dancer sort of way. We as adults do not permit ourselves to express these things very often and we suffer for it.
I can watch my husband John be an incredible father to Quinn, and a wonderful light-hearted influence on Tanner. Before John came into my life, I had a fear that Tanner would grow up as a frustrated perfectionist. But in the last 2 years Tanner has become light-hearted, with a great sense of humor and is becoming a confident outgoing young man.
John has brought true, lasting happiness into my life. He is the most honest, giving, humorous, talented, loving man. He writes songs for me. He sings for me. He takes care of me and I've learned how to love being taken care of.
I feel closer now to my parents, sister and brother, and their families. They are my history, the foundation of my life. I look forward to this summer, spending time at the lake, enjoying every minute with them. I feel so blessed to be part of the Brownell family. They have shown me heart-felt support and love. I delight in spending time with them.
I am the fortunate one.
I had just quit my two decade career in IT, returning to school to study pharmacy 6 months ago. I couldn’t stifle the guilt of not being an earner. I was obsessed with guilt. But I would have a couple hours each day free of guilt. I would douse the guilt with wine.Then bam, in the middle of fall semester, the shock of cancer. A funny thing happened when I heard the diagnosis. Something I have not admitted to anyone, including John. Sure, I was horrified and fearful, but I also felt relief. This overwhelming disease had given me the ultimate excuse for being a quitter. The guilt was gone and that felt good, very good.
Fast forward to today, my 3 month cancer anniversary. I don’t want to go back and change anything. I feel a freedom now to live doing the things I feel are important. Taking interest in my son Tanner’s video games. I never had the patience to do that before. When he asks me to come out and build a snow fort, I do it. Happily. I love Listening, really listening to my step son Quinn.
He is 7, at such a wonderful age and full of exciting imaginative stories. He feels things deeply and I love him for that. He cries when he is disappointed, fearful or scared. He leaps for joy in a funny Broadway dancer sort of way. We as adults do not permit ourselves to express these things very often and we suffer for it.
I can watch my husband John be an incredible father to Quinn, and a wonderful light-hearted influence on Tanner. Before John came into my life, I had a fear that Tanner would grow up as a frustrated perfectionist. But in the last 2 years Tanner has become light-hearted, with a great sense of humor and is becoming a confident outgoing young man.
John has brought true, lasting happiness into my life. He is the most honest, giving, humorous, talented, loving man. He writes songs for me. He sings for me. He takes care of me and I've learned how to love being taken care of.I feel closer now to my parents, sister and brother, and their families. They are my history, the foundation of my life. I look forward to this summer, spending time at the lake, enjoying every minute with them. I feel so blessed to be part of the Brownell family. They have shown me heart-felt support and love. I delight in spending time with them.
I am the fortunate one.
Tuesday, February 12, 2008
False Alarm
Christine called today with blood test results. No Diabetes for me. I am so happy! They are chalking high blood sugar readings up to the effect of steroids. Since I no longer have to premedicate with a steroid prior to chemo treatments my blood sugar levels should stay in a healthy range. They also did a test for arthritis which came back negative. Another side effect I don't remember hearing about. I don't doubt they warned me about it, but I don't remember.
Next chemo is a week from thursday. Ick, yuck, pbbbbbtttt! I'll have a chest x-ray done that morning prior to treatment to check for local recurrance. I won't have to wait days to find out, they'll be able to check out the x-ray and let me know that day. My Mom is coming for this treatment. It will be so nice to have her there and I hope she has the opportunity to meet Dr. Schmidt.
I'm preparing myself just in case. I'm not particularily worried about it but I take this cancer seriously because the mass grew from 1.6 cm to 1.9 cm between the ultrasound on Nov 8th and surgery on Nov 21st. Its impossible to remove all breast tissue with a mastectomy so these 3 month x-rays are my best defense. Find any recurrance early and remove it or radiate it.
Next chemo is a week from thursday. Ick, yuck, pbbbbbtttt! I'll have a chest x-ray done that morning prior to treatment to check for local recurrance. I won't have to wait days to find out, they'll be able to check out the x-ray and let me know that day. My Mom is coming for this treatment. It will be so nice to have her there and I hope she has the opportunity to meet Dr. Schmidt.
I'm preparing myself just in case. I'm not particularily worried about it but I take this cancer seriously because the mass grew from 1.6 cm to 1.9 cm between the ultrasound on Nov 8th and surgery on Nov 21st. Its impossible to remove all breast tissue with a mastectomy so these 3 month x-rays are my best defense. Find any recurrance early and remove it or radiate it.
Song That Picks Me Up
I can't take credit for finding incredible music like this. Thats my husband's job. He introduces me to music I'm sure I would otherwise never hear. I think this may be his favorite Bright Eyes song.
Bowl of Oranges
Bowl of Oranges
Sunday, February 10, 2008
Surgical Menopause
The day before my surgery I received the results from a genetic test stating that I have the BRCA2 gene mutation. Women who have this mutation have up to an 85% chance of having breast cancer in their lifetime. They also have an elevated chance of ovarian cancer. I had already decided to do the bi-lateral mastectomy because my left breast had cancer in two places and was aggressive. It made sense to me to get rid of all the tissue that might bring cancer in the future. My cancer is highly estrogen driven. That coupled with being BRCA2 meant that removing my ovaries was necessary now too.
I had a few hours to get my OB-Gyn on board to do the oophorectomy the next day during the 4 hours my surgeon had the operating room reserved for me. She agreed after taking me in her office for a sit-down to make sure I understood fully what was going to happen. She said that removing my ovaries meant instant menopause. I would feel menopausal side effects immediately after surgery and they would be more pronounced than typical side effects, which normally appear gradually over a period of years while your body gets used to lowering estrogen levels. She was not kidding when she said I would turn into a “raving bitch”. Whoa, I was already overwhelmed with what I would be dealing with after surgery. Now my personality was going to change too? Would I end up alienating the people I needed to help get me through recovery and then chemo? This new worry really got to me and kept me from sleeping much that night. I felt so bad for my new husband, John. Didn’t he have enough to deal with already? I felt bad for me, I did not want to change into someone I was not.
Here’s where I lucked out. I’ve had perhaps 5 hot flashes in the past 10 weeks since surgery. Big deal, sweating is just sweating. Its strange but it dosent hurt. And no, I don’t believe I have sprouted a new personality. Well maybe you should ask John, perhaps I just don’t realize and he’s too nice to tell me just yet. To anyone debating about whether to do an oophorectomy to lessen their chance of a recurrance, I am happy I went through with it and am comforted by the thought that I reduced my estrogen load down to almost nil.
The one downside that I am concerned about is osteoporosis. It’s pretty common for post-menopausal women to get it and the drug I'll be taking for 5 years called Femara causes accelerated bone loss. Darn it. I want to keep my bones strong so I can continue to be active. I take my calcium supplements daily and run when I can to hopefully hold osteoporosis at bay.
I had a few hours to get my OB-Gyn on board to do the oophorectomy the next day during the 4 hours my surgeon had the operating room reserved for me. She agreed after taking me in her office for a sit-down to make sure I understood fully what was going to happen. She said that removing my ovaries meant instant menopause. I would feel menopausal side effects immediately after surgery and they would be more pronounced than typical side effects, which normally appear gradually over a period of years while your body gets used to lowering estrogen levels. She was not kidding when she said I would turn into a “raving bitch”. Whoa, I was already overwhelmed with what I would be dealing with after surgery. Now my personality was going to change too? Would I end up alienating the people I needed to help get me through recovery and then chemo? This new worry really got to me and kept me from sleeping much that night. I felt so bad for my new husband, John. Didn’t he have enough to deal with already? I felt bad for me, I did not want to change into someone I was not.
Here’s where I lucked out. I’ve had perhaps 5 hot flashes in the past 10 weeks since surgery. Big deal, sweating is just sweating. Its strange but it dosent hurt. And no, I don’t believe I have sprouted a new personality. Well maybe you should ask John, perhaps I just don’t realize and he’s too nice to tell me just yet. To anyone debating about whether to do an oophorectomy to lessen their chance of a recurrance, I am happy I went through with it and am comforted by the thought that I reduced my estrogen load down to almost nil.
The one downside that I am concerned about is osteoporosis. It’s pretty common for post-menopausal women to get it and the drug I'll be taking for 5 years called Femara causes accelerated bone loss. Darn it. I want to keep my bones strong so I can continue to be active. I take my calcium supplements daily and run when I can to hopefully hold osteoporosis at bay.
Saturday, February 9, 2008
Tough Enough?
Nine days out from my third chemo treatment and I’m still feeling fatigued. After the first two I sprang back to life inside of a week.
The third treatment was different in another way also. I experienced the most searing headache I’ve ever had. It happened three days after chemo. The ache started building in the morning at the back of my neck. By mid-day I was taking extra strength Tylenol and getting relief. Went to bed with a new dose of Tylenol however it wasn’t completely dulling the pain. I woke at 4 am with a pulsing headache. I managed to get up and take more Tylenol but walking made my heart beat faster which caused more pain. I layed in bed afraid to move or talk. Nausea had set in. I woke John because I was frightened and did not know what else to do. I was afraid that it would not go away. He massaged my neck but unfortunately the touch was too much and made me feel worse. Finally, at five, I was able to turn on my side and fall asleep.
I was concerned enough to talk to Dr. Schmidt about it when I went in for blood counts a couple days ago. A side effect of Zofran (my primary anti-nausea drug) is headache. She has prescribed an alternative anti-nausea med for me to take next chemo.
I also asked Dr. Schmidt if there have been any studies that show the benefit of having six Cytoxan/Taxotere (C/T) treatments versus four. I have been reading and posting with other women undergoing C/T treatment on a breastcancer.org message board. Of all the women on the board there is only one other who is getting six treatments, like myself. The rest are receiving only four. Her doctor is giving her six because she has had her cancer recur. Unfortunately there are no statistics available to answer my question. Dr. Schmidt is erring on the side of caution and listening to her intuition with my treatment plan of six.
I have to admit, I am worried about how difficult the next three treatments will be.
The third treatment was different in another way also. I experienced the most searing headache I’ve ever had. It happened three days after chemo. The ache started building in the morning at the back of my neck. By mid-day I was taking extra strength Tylenol and getting relief. Went to bed with a new dose of Tylenol however it wasn’t completely dulling the pain. I woke at 4 am with a pulsing headache. I managed to get up and take more Tylenol but walking made my heart beat faster which caused more pain. I layed in bed afraid to move or talk. Nausea had set in. I woke John because I was frightened and did not know what else to do. I was afraid that it would not go away. He massaged my neck but unfortunately the touch was too much and made me feel worse. Finally, at five, I was able to turn on my side and fall asleep.
I was concerned enough to talk to Dr. Schmidt about it when I went in for blood counts a couple days ago. A side effect of Zofran (my primary anti-nausea drug) is headache. She has prescribed an alternative anti-nausea med for me to take next chemo.
I also asked Dr. Schmidt if there have been any studies that show the benefit of having six Cytoxan/Taxotere (C/T) treatments versus four. I have been reading and posting with other women undergoing C/T treatment on a breastcancer.org message board. Of all the women on the board there is only one other who is getting six treatments, like myself. The rest are receiving only four. Her doctor is giving her six because she has had her cancer recur. Unfortunately there are no statistics available to answer my question. Dr. Schmidt is erring on the side of caution and listening to her intuition with my treatment plan of six.
I have to admit, I am worried about how difficult the next three treatments will be.
Friday, February 8, 2008
My Biker Chick Oncologist
Meet Dr. Judy Schmidt
She is a remarkable person with a riveting zest for life. Her philosophy in treating cancer patients is centered around educating the patient in their disease and including them in treatment decisions. When John and I first met Judy the night before surgery we spent 3 hours with her reviewing research studies pertaining to my type of cancer. She intently listed to us and answered our questions directly yet with compassion. Because I tested positive for the gene mutation called BRCA2 which disables tumor suppression she whole-heartedly agreed with my decision to have an oophorectomy and bi-lateral mastectomy (rather than lumpectomies). She expressed her concern with jumping right into breast reconstruction because we needed to see if there were sufficient cancer free margins around the cancerous areas before thinking about implants. Implants might have had to be removed if the margins were not clean and I needed radiation. I appreciated her caution about the unnecessary surgery and chose not to go forward with that part of the surgery.
When you enter Guardian Oncology you are greeted by genuine caring people. It feels like visiting a favorite relative’s home. Not the stark bright clinical setting which we have all become accustomed to. You know you will be invited to sit down in a comfy chair where you can invite a cute little dog to jump up in your lap. The two sweet little dogs are not at all bothersome, in fact they have turned me in to a lap dog lover.
Judy believes in an integrated approach in healing patients. She employs full time massage, Reiki and Guided Imagery therapists. These services are free to patients and their families to use as often as desired. When I was at a low point during my hospital stay she sent Sue over to my room to give me and my mother massages. I’ll write more later about a break-through I had with handling my fears during a Guided Imagery session.
The biker chick reference comes from a fund raiser for the Guardian Angels, a foundation she started, which raises money for cancer patients who cannot afford treatment. She gathers a group of sponsored bikers for a ride each summer. John is currently working on a new website for Guardian Oncology which has some video of Judy talking about her practice and the Guardian Angel ride. She is compelling to watch. I’ll include a link when the site goes live.
She is a remarkable person with a riveting zest for life. Her philosophy in treating cancer patients is centered around educating the patient in their disease and including them in treatment decisions. When John and I first met Judy the night before surgery we spent 3 hours with her reviewing research studies pertaining to my type of cancer. She intently listed to us and answered our questions directly yet with compassion. Because I tested positive for the gene mutation called BRCA2 which disables tumor suppression she whole-heartedly agreed with my decision to have an oophorectomy and bi-lateral mastectomy (rather than lumpectomies). She expressed her concern with jumping right into breast reconstruction because we needed to see if there were sufficient cancer free margins around the cancerous areas before thinking about implants. Implants might have had to be removed if the margins were not clean and I needed radiation. I appreciated her caution about the unnecessary surgery and chose not to go forward with that part of the surgery.
When you enter Guardian Oncology you are greeted by genuine caring people. It feels like visiting a favorite relative’s home. Not the stark bright clinical setting which we have all become accustomed to. You know you will be invited to sit down in a comfy chair where you can invite a cute little dog to jump up in your lap. The two sweet little dogs are not at all bothersome, in fact they have turned me in to a lap dog lover.
Judy believes in an integrated approach in healing patients. She employs full time massage, Reiki and Guided Imagery therapists. These services are free to patients and their families to use as often as desired. When I was at a low point during my hospital stay she sent Sue over to my room to give me and my mother massages. I’ll write more later about a break-through I had with handling my fears during a Guided Imagery session.
The biker chick reference comes from a fund raiser for the Guardian Angels, a foundation she started, which raises money for cancer patients who cannot afford treatment. She gathers a group of sponsored bikers for a ride each summer. John is currently working on a new website for Guardian Oncology which has some video of Judy talking about her practice and the Guardian Angel ride. She is compelling to watch. I’ll include a link when the site goes live.
Wednesday, February 6, 2008
Toxic Makeover
Try to relax, this won't hurt a bit. It’s going to hurt me more than it hurts you. It’s also going to help me more than it helps you.
Nothing is normal anymore. I've put my trust in an oncologist to infuse me with the maximum dose my shrinking body can handle of toxic drugs every three weeks. After the IV goes in and I’ve had the pre-med bags containing powerful anti-nausea and steroid drugs, the first bag of chemo drugs is hung and begins to drip. My fears creep up and interrupt the soothing music in my headphones. What if they made a mistake in calculating the dose this time? Will my chest tighten up and inflammation within my nasal passages make it difficult to breathe like last time the cytoxin went in? Can I again suppress the foreboding that my brain invokes, desperately trying to motivate me to stop whatever is allowing my bloodstream to be infiltrated with caustic chemicals?
Who will sit down next to me this time? Will it be cheery Pat? I just love her and her spunky attitude. She’s on her third recurrence and has integrated her infusions into her life as if she’s in for her 3 month perm. Will I see Toni again? I met her the first and only time at chemo number two. The young, bald, 31 year old walked in and John gave up the lazy boy recliner next to me so Toni could settle in for her infusion. She was quieter than most chemo patients. I tried to make eye contact and smile at her but she stared straight ahead. A nurse drew blood from the port near her collar bone. Then Joni, my oncologist’s partner came and sat with her. The typical “head to toe” interview began. During the interview we are asked questions about new side effects we’re suffering from and about every bodily function we have. Vitamin and drug doses are reviewed. When Toni explained about the abdominal pain she experienced over the past weekend, Joni calmly explained that when the liver has been overtaken by tumor it expands. The liver is encased (much like a sausage) and the massive growth was stretching the casing causing Toni’s excruciating pain. Toni was warned to do the best she could not to overdose on the Percocet that only took the edge off of her pain in typical doses. I turned the sound off in my headphones. Joni held Toni’s hand and said “It’s time to talk to your daughter. I know it will be difficult but it’s important to give her the chance to take care of you and to have the conversations with you that sometimes only happen at this time”. Toni nodded. Her eyes were brimmed in red but she was holding in her voice and tears. Joni continued to sit and hold Toni’s hand for several minutes and then quietly got up and went to the next patient on her schedule. My heart was broken for the stranger next to me. I moved my left hand over to her and held her hand. Then the tears came down, hard, for both of us.
Before
After
Nothing is normal anymore. I've put my trust in an oncologist to infuse me with the maximum dose my shrinking body can handle of toxic drugs every three weeks. After the IV goes in and I’ve had the pre-med bags containing powerful anti-nausea and steroid drugs, the first bag of chemo drugs is hung and begins to drip. My fears creep up and interrupt the soothing music in my headphones. What if they made a mistake in calculating the dose this time? Will my chest tighten up and inflammation within my nasal passages make it difficult to breathe like last time the cytoxin went in? Can I again suppress the foreboding that my brain invokes, desperately trying to motivate me to stop whatever is allowing my bloodstream to be infiltrated with caustic chemicals?
Who will sit down next to me this time? Will it be cheery Pat? I just love her and her spunky attitude. She’s on her third recurrence and has integrated her infusions into her life as if she’s in for her 3 month perm. Will I see Toni again? I met her the first and only time at chemo number two. The young, bald, 31 year old walked in and John gave up the lazy boy recliner next to me so Toni could settle in for her infusion. She was quieter than most chemo patients. I tried to make eye contact and smile at her but she stared straight ahead. A nurse drew blood from the port near her collar bone. Then Joni, my oncologist’s partner came and sat with her. The typical “head to toe” interview began. During the interview we are asked questions about new side effects we’re suffering from and about every bodily function we have. Vitamin and drug doses are reviewed. When Toni explained about the abdominal pain she experienced over the past weekend, Joni calmly explained that when the liver has been overtaken by tumor it expands. The liver is encased (much like a sausage) and the massive growth was stretching the casing causing Toni’s excruciating pain. Toni was warned to do the best she could not to overdose on the Percocet that only took the edge off of her pain in typical doses. I turned the sound off in my headphones. Joni held Toni’s hand and said “It’s time to talk to your daughter. I know it will be difficult but it’s important to give her the chance to take care of you and to have the conversations with you that sometimes only happen at this time”. Toni nodded. Her eyes were brimmed in red but she was holding in her voice and tears. Joni continued to sit and hold Toni’s hand for several minutes and then quietly got up and went to the next patient on her schedule. My heart was broken for the stranger next to me. I moved my left hand over to her and held her hand. Then the tears came down, hard, for both of us.
Before
After
Tuesday, February 5, 2008
All Together Now People, What Doesn’t Kill You Makes You Stronger
For me it’s What Scares The Shit Out Of You Will Eventually Become Boring, Even To You . My irrational fear of someone shoving a needle into one of my veins used to give me palpitations. The shaking, sweating, “I’d escape you if I weren’t so light-headed” response. At my second chemo the RN trying to start my IV asked me to take a Xanax before the next appointment. I was mentally relaxing as best I could but my veins were reacting to the Fight or Flight response I was having. The body constricts blood flow to the extremities giving your vital internal organs the power to make you run fast away from the equivalent of a charging cybertooth. My veins were flattening because of this vasoconstriction, each time she’d insert the catheter. I get bored with repetition however. When Christine started my IV for the third chemo I did not feel fear and I’m not very concerned about the next one.
Lets Go Ahead and Add Diabetes While We're At It
Got a call from the warmest person I know, my chemo nurse Christine. Some test results were in. She started with the good news. Results show that it doesn't appear as if any damage has been done to my heart from the chemo. My kidney and liver function is good. Right on! Happy to get this news. A worrysome issue is that my white blood cell count is low. She reminded me to avoid sick people and wash my hands alot, avoid cutting myself or touching my eyes etc etc etc because a cold can easily turn into pneumonia when your body does not have enough white blood cells to fight infection. Then she dropped the not-so-good news. Looks like Diabetes. I hadn't realized that chemo can cause Diabetes. Another side-effect I don't remember hearing about.
I'll take it. I have no problem with insulin injections and testing my blood and have already mostly cut white flour and sugar from my diet. I will miss fruit though.
I'll take it. I have no problem with insulin injections and testing my blood and have already mostly cut white flour and sugar from my diet. I will miss fruit though.
Hair Everywhere
I prepared for losing my hair. Bought a wig and loads of cool winter hats which are plentiful in Missoula. What I wasn’t prepared for was the process and my reaction when it happened. A week before my second chemo treatment my skull began to ache. Strangely, I had not been warned about the pain involved when your body is shutting down its hair follicles. It felt like the sensation you feel after releasing a tight ponytail, times 10.
It was a week long process. Each day the amount of hair that would come out in my hands after running my fingers through my hair would increase. Watching T.V. one evening noticibly bigger swatches came out when I tugged. I was entranced and could not stop tugging. I made trips to our bathroom mirror to continue my engrossing new addiction, gathering handfulls. I started wearing a hat to hide my thinning hair. By midmorning of each day-long pharmacy lab I would have a headache.
I came out of the trance and my feelings changed. I was humiliated by my appearance without a hat. I’ll try to explain. After diagnosis, everything that had happened to me was with my consent. I choose to do everything I could with surgery to give me the best chance of avoiding recurrance. I chose to do chemotherapy after tests showed my cancer to be aggressive. I had up to this point felt brave and proud of myself. I did not choose to look like a cancer victim.
As with every other step along the way, with time my feelings lost their intensity. Going to campus every day and being open with my fellow students about chemo therapy side-effects, I found that people did not look at me with pity. My courageous and supportive sister offered to shave her head on the spot to make me feel more comfortable and I knew she meant it. She doesn’t bluff. So did John. I am just too vain to go without a hat or wig.
It was a week long process. Each day the amount of hair that would come out in my hands after running my fingers through my hair would increase. Watching T.V. one evening noticibly bigger swatches came out when I tugged. I was entranced and could not stop tugging. I made trips to our bathroom mirror to continue my engrossing new addiction, gathering handfulls. I started wearing a hat to hide my thinning hair. By midmorning of each day-long pharmacy lab I would have a headache.
I came out of the trance and my feelings changed. I was humiliated by my appearance without a hat. I’ll try to explain. After diagnosis, everything that had happened to me was with my consent. I choose to do everything I could with surgery to give me the best chance of avoiding recurrance. I chose to do chemotherapy after tests showed my cancer to be aggressive. I had up to this point felt brave and proud of myself. I did not choose to look like a cancer victim.
As with every other step along the way, with time my feelings lost their intensity. Going to campus every day and being open with my fellow students about chemo therapy side-effects, I found that people did not look at me with pity. My courageous and supportive sister offered to shave her head on the spot to make me feel more comfortable and I knew she meant it. She doesn’t bluff. So did John. I am just too vain to go without a hat or wig.
Monday, February 4, 2008
The Meaning Came Back
The day after coming home from the hospital, my parents and my sister came to our house with a 14 foot tree and supplies in hand to deck out our new house with decorations for Christmas. I remember that weekend as a wonderful time, appreciating each caring word and gesture, my mom working non-stop shopping, cleaning and cooking, my dad working from sun up to sun down helping out with tasks only a dad knows how to do and my sweet sister Anne making me laugh while she turned our house into a beautiful Christmas spectacle. 
My son Tanner got into the act putting lights up outside in the cold and made my happiness complete. John, the ever diligent worker was stuck in the office trying to catch up on the work that had piled up while he stayed with me in the hospital.
I revelled in our Christmas wonderland, watching the snow fall on the pine trees outside our living room window, for the next couple of weeks while recovering. Granted, the pain meds and Xanax helped keep my euphoria going. I was looking forward to all of my immediate family, including my brother Mark, his wife Renell and 3 kids, and Carol's arrival at our house for Christmas day.
The weather was dicey on Christmas, yet everyone came regardless of the time and trouble it took. Mark's family had to travel 3 hours each way that day, on snowy roads.
I don’t remember a happier Christmas. A few from my childhood come close. I had had my first Chemo treatment 5 days prior and was bone tired after any sort of exertion, like for instance, standing up. On Christmas Eve, I was overcome with emotion when my husband John played a recording of a song he had composed for me. The lyrics that get me every time are
And in the middle of the darkest days
When the light in your eyes starts to fade
and "hope" is just a word people say
When you feel like you have gone astray
I hope that I can take it all away
And do for you what you have done for me
I had moments during that time period where I would succomb to underlying sadness and despair. But during the days around Christmas, looking around the room at all the people I love so much, who have given me enough good memories to fill a lifetime, my mourning for what I'd lost and fear of what the future would bring were erased.
Not So Happy Patient
I had surgery to lop off my ovaries and breasts a few weeks before Christmas 2007. We checked in at 6 am for a Sentinel Node location procedure in radiology. This is where they inject blue radioactive material around your tumor and then give it time to find its way through your lymph system to a node which is called the sentinel one. You have up to 40 nodes under each arm did you know that? I had a very caring radiologist who did a wonderful job of numbing me up before the injections, which others had warned me would be a painful deal. Later, using imaging he located the node and marked an X on my skin so the surgeon would know where to dig. Then John and I waited in a curtained pre-surgical area for 5 hours for the surgery. I had not had surgery before and was frightened even after they infused the Versed (which is supposed to relax you and then makes you forget what happens prior to putting you under) and I remember being wheeled into the freezing cold operating room. Next I remember waking up to a nurse saying everything is fine and that I would be getting a private room. Wow, I thought, that is really cool. Then, after having two fantasic nurses the first 24 hours, who went about their tasks of caring for me with efficient skill, my expectations that the excellent care would continue were high.
My surgeon disturbed me when he visited. Each time he blew into the room, the day after surgery, he’d complain of his long day, how he wanted to go home, and talk of love of his alma mater’s football team. He also lamented my low blood counts stating that his surgery had gone beautifully and that the surgeon who removed my ovaries must have left a bleeder. His examinations were brusk and John and I couldn’t get a word in edgewise. He also stated for the ump-teenth time that I should have gone forward with breast reconstruction during the surgery because it was not a big deal, and I was young, and the plastic surgeon was the best. I had cancelled the insertion of the implants at the last minute just prior to surgery, after my oncologist who we met with until late in the night the night before, said it was just too much surgery and we needed to see if I had cancer-free margins. My surgeon does not like my oncologist, Dr. Judy Schmidt because she is not part of the conventional Montana Cancer Center machine here in Missoula. I found out the next day that he was not forwarding his doctors notes to her even though I told him that I had chosen Dr. Schmidt over the oncologist that he favored at the Montana Cancer Center.
Early afternoon the second day, just after John had left the hospital for a few hours and my sister went back to work from her lunch hour visit, my surgeon came into my room. He pointed to the TV and said "turn that off I have to tell you something". I did and he came right out with it. “We found cancer in your lymph nodes blah blah blah blah” - I honestly don’t remember what else came after that other than – “and we need to go back in and do a full axillary disection to remove and test the other nodes”. He quoted a study from the Netherlands that said the isolated tumor cells that were found predicted a 30% chance of cancer in other nodes. I sat and listened and thanked him as he left. I immediately called John and Anne and asked them to come back and started to cry. While waiting for them to come back I called my oncologist and cried to her about my surgeon’s blunt bedside manner, telling her I did not want anything more to do with him and to please recommend another surgeon to do the lymph node surgery. Hours of dismay followed. I was hitting a low point as we passed the news on to family. During dinner while I was visiting with my sister and her family who had come to visit, John took a call from my oncologist’s partner. She and Judy had gone to work after my phone call, requesting the pathology report, calling the pathologist for clarification, researching my particular situation and calling experts from around the country. She reported that I was in fact considered lymph node NEGATIVE because the cancer cells that they found were isolated tumor cells, not metastises. The surgery was not recommended by the experts. This was wonderful news! The best news I could have gotten at this point. It also added to my mistrust of my surgeon.
John and I were awaken abruptly at 5 am on day three to a new bumbling nurse and her nursing student brashly telling me "you have been put on NPO, we need to type your blood for a blood transfusion and prepare for surgery". John and I were confused, I had not consented to the lymph node surgery the day before. The nurse did not know anything more, I was to wait until the surgeon came in on his rounds. I felt like a helpless victim, emotionally suffering from low blood counts and anemia caused by the bleed on the left hand side. When my surgeon appeared a few hours later, I was worse off having not been given anything to eat or drink. He said he needed to go back in and try to find where the blood was coming from. It would be no big deal, and in fact easier on him, because my incisions would not have had a chance to close. I begged him to hold off and give me the ordered two units of blood to see if my body could take care of the problem itself. He then made the mistake of quipping "I probably couldn't have found the bleed anyway". This infuriated me. His cavalier attitude and lighthearted banter might work with other patients, but not me.
The bumbling nurse returned a few hours later with blood and began to set up the IV system. She began to have problems with the machinery, and she complained outwardly her frustration with the machine and not knowing what to do about it, for some time. I knew just enough from my pharmacy classes that giving blood to a person is not a low risk deal. Any mismatch in typing, air bubbles in the tubing or exposure to free floating bacteria has dire consequences for the patient. Each curse from her made me more fearful. When she spilled the blood on my arm and tray table while swtiching to a new machine I wanted to cry. My eyes pleaded to my mom what I couldn't say in words. I wanted scream "Get her away from me! Get someone else. Please let me go home.". Instead, I closed my eyes and cried inside. The transfusion ended up fine and I was revived by the fresh blood and avoided additional surgery. But the frazzled nerves remained and I mistrusted her for the rest of my stay.
Late that night I hit bottom. I was to have a second bag of IV antibiotics. My IV site was very painful. A new male nurse said he would need to put in a new IV, the vein was about to blow from all that had been pushed through it. I lost it and balled and pleaded with him to call the doctor to ask if I could have antibiotics in pill form. My request was granted and I was able to leave the hospital the next day.
My surgeon disturbed me when he visited. Each time he blew into the room, the day after surgery, he’d complain of his long day, how he wanted to go home, and talk of love of his alma mater’s football team. He also lamented my low blood counts stating that his surgery had gone beautifully and that the surgeon who removed my ovaries must have left a bleeder. His examinations were brusk and John and I couldn’t get a word in edgewise. He also stated for the ump-teenth time that I should have gone forward with breast reconstruction during the surgery because it was not a big deal, and I was young, and the plastic surgeon was the best. I had cancelled the insertion of the implants at the last minute just prior to surgery, after my oncologist who we met with until late in the night the night before, said it was just too much surgery and we needed to see if I had cancer-free margins. My surgeon does not like my oncologist, Dr. Judy Schmidt because she is not part of the conventional Montana Cancer Center machine here in Missoula. I found out the next day that he was not forwarding his doctors notes to her even though I told him that I had chosen Dr. Schmidt over the oncologist that he favored at the Montana Cancer Center.
Early afternoon the second day, just after John had left the hospital for a few hours and my sister went back to work from her lunch hour visit, my surgeon came into my room. He pointed to the TV and said "turn that off I have to tell you something". I did and he came right out with it. “We found cancer in your lymph nodes blah blah blah blah” - I honestly don’t remember what else came after that other than – “and we need to go back in and do a full axillary disection to remove and test the other nodes”. He quoted a study from the Netherlands that said the isolated tumor cells that were found predicted a 30% chance of cancer in other nodes. I sat and listened and thanked him as he left. I immediately called John and Anne and asked them to come back and started to cry. While waiting for them to come back I called my oncologist and cried to her about my surgeon’s blunt bedside manner, telling her I did not want anything more to do with him and to please recommend another surgeon to do the lymph node surgery. Hours of dismay followed. I was hitting a low point as we passed the news on to family. During dinner while I was visiting with my sister and her family who had come to visit, John took a call from my oncologist’s partner. She and Judy had gone to work after my phone call, requesting the pathology report, calling the pathologist for clarification, researching my particular situation and calling experts from around the country. She reported that I was in fact considered lymph node NEGATIVE because the cancer cells that they found were isolated tumor cells, not metastises. The surgery was not recommended by the experts. This was wonderful news! The best news I could have gotten at this point. It also added to my mistrust of my surgeon.
John and I were awaken abruptly at 5 am on day three to a new bumbling nurse and her nursing student brashly telling me "you have been put on NPO, we need to type your blood for a blood transfusion and prepare for surgery". John and I were confused, I had not consented to the lymph node surgery the day before. The nurse did not know anything more, I was to wait until the surgeon came in on his rounds. I felt like a helpless victim, emotionally suffering from low blood counts and anemia caused by the bleed on the left hand side. When my surgeon appeared a few hours later, I was worse off having not been given anything to eat or drink. He said he needed to go back in and try to find where the blood was coming from. It would be no big deal, and in fact easier on him, because my incisions would not have had a chance to close. I begged him to hold off and give me the ordered two units of blood to see if my body could take care of the problem itself. He then made the mistake of quipping "I probably couldn't have found the bleed anyway". This infuriated me. His cavalier attitude and lighthearted banter might work with other patients, but not me.
The bumbling nurse returned a few hours later with blood and began to set up the IV system. She began to have problems with the machinery, and she complained outwardly her frustration with the machine and not knowing what to do about it, for some time. I knew just enough from my pharmacy classes that giving blood to a person is not a low risk deal. Any mismatch in typing, air bubbles in the tubing or exposure to free floating bacteria has dire consequences for the patient. Each curse from her made me more fearful. When she spilled the blood on my arm and tray table while swtiching to a new machine I wanted to cry. My eyes pleaded to my mom what I couldn't say in words. I wanted scream "Get her away from me! Get someone else. Please let me go home.". Instead, I closed my eyes and cried inside. The transfusion ended up fine and I was revived by the fresh blood and avoided additional surgery. But the frazzled nerves remained and I mistrusted her for the rest of my stay.
Late that night I hit bottom. I was to have a second bag of IV antibiotics. My IV site was very painful. A new male nurse said he would need to put in a new IV, the vein was about to blow from all that had been pushed through it. I lost it and balled and pleaded with him to call the doctor to ask if I could have antibiotics in pill form. My request was granted and I was able to leave the hospital the next day.
The Other Reason
When I was told that I had cancer, I went into information-gathering mode. I was sure that I would find a book, a doctor, or a source on the internet that would put my fears to rest, and give me the guarantee that I was not going to have to leave the people I love. I was also so very fearful of each unavoidable step along the way: biopsies, diagnosis, receiving pathology reports, IV's, surgery, chemotherapy, hormone therapy, the seemingly never-ending fear of recurrance. The other reason I am writing is that I want people who are dealing with these fears to find my blog. I can honestly say that what I've experienced so far has been easier to cope with than my fears.
There were terrifying days between diagnosis day and conquering each step. The only relief I found was to cry myself to sleep, along side John who listened compassionately to every word. If I didn't have John to console me, I don't know, I can't fathom how I would have coped.
Conversation Coward
I feel comfortable conversing with close family because I am not fearful of their impression of me on that particular day and know they really don’t mind listening to me repeat myself. I avoid, however, talking with people outside of my inner circle. Its not that I don’t want to talk about what is happening, I do. Its when the conversation flows to something other than cancer that I struggle. Simply put, since beginning chemo, I often cannot find words. It would be nice to see people, invite them to the house and enjoy them, but I would only feel truly comfortable doing so if I could warn them, thus giving me an excuse to blankly look at them like an old cow staring at a new gate. Now, don't get me wrong, I have wonderful friends who would blow off or maybe not even notice my inability to find words. I just happen be friends with intelligently funny hipsters who are engaging conversationalists. You may be reading this thinking, 'Laurie is paranoid', this online converstation is not troubling. Well, its taken me 40 mins to write this entry and 4 trips to thesaurus.com searching for words that communicate what I want to say. Maybe it would be better if I were dumbed down enough by chemo to not realize that I'm a dullard! |
Why
The thoughts, prayers, cards, packages, flowers and well wishes have been overwhelming. I am blessed that so many people care about me and my tussle with cancer. But I cannot say thank you enough for everything that so many people have done. I am doing pretty well and am happy to report that I am officially 1/2 done with chemo! I started this online convo because it will be cathartic for me to get my daily thoughts out of my head that otherwise bounce around in perpetuity until they are released. Also, it’s a way for me to communicate with friends and family without interrupting their busy day, or crowding their inbox.
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