First, let me say that chemo saved my life. It has also changed my life, and the adjustment is harder than I thought it would be.
My "chemo brain" seems to be very slowly but at least improving. My husband tells me my memory is getting better, but I hate that I can't even tell one way or another. I can no longer trust my already less-than-stellar memory and I must rely on notes and alerts. Heaven help us all if I lose my iPhone.
I have mild neuropathy in my feet that apparently is not going to go away. The numbness is not a big deal, but I'm trying different strategies to minimize the burning feeling. Apparently this is what happens to people with advanced diabetes too. My sympathies to them.
I was adjusting to my new reality until today. I was just told I have "significant" osteoporosis. An acquaintance of mine, who went through the same therapy at the same time I did, broke her foot by pushing up to get in bed. That sent me to the imaging clinic to get a bone scan, and I'm in the same boat. This means medication, changing my diet and starting weight-bearing exercise, and I've been told "Don't fall!" Okay then.
A few months ago I joked with my friends that my body is 80 years old. Turns out I was right. I'm sure this will eventually become a part of everyday life and just be a kind of background noise. But thanks for letting me vent.
Showing posts with label breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts
April 10, 2013
May 20, 2012
Balanced
Three days ago, my breast prosthesis arrived. It’s not a perfect match, but it’s close enough. I have a balanced appearance now. Honestly, I really didn’t care, but others were uncomfortable seeing me with one flat side. And my clothes do fit better. It seems I did all my mourning before I lost my breast. And I truly did mourn, especially as time came to a close. Once done, it was time to move on.
It will be at least a year of healing before I can consider reconstruction. I am not eligible for an implant, but that’s okay—I am uncomfortable with that option. I must have a delicate procedure called a DIEP that calls for transplanting skin and fat from my abdomen to my chest. Microsurgery techniques will connect blood vessels to keep the transplant viable.
While I was introduced to a breast surgeon here, I’ve been considering a hospital in Texas, MD Anderson, which has a clinic dedicated to inflammatory breast cancer. When I mentioned that to someone here, she strongly encouraged me to go there for reconstruction. This is a relatively new and difficult procedure; I want to have a doctor who’s done it a lot and well. MD Anderson has that reputation. Bonus: I get a tummy tuck, something I have wanted since I had an 11½-pound baby 20 years ago. ☺ I consider that my reward for going through all this.
The undercurrent that you don’t hear much about is the uncertainty of how much time is left. The everyday-ness of life eventually overshadows it, but there it is. Of course, no one knows how much time is left. This wake-up call helps me to live each moment to its fullest and leave no wish untried. Next stop: NYC!
It will be at least a year of healing before I can consider reconstruction. I am not eligible for an implant, but that’s okay—I am uncomfortable with that option. I must have a delicate procedure called a DIEP that calls for transplanting skin and fat from my abdomen to my chest. Microsurgery techniques will connect blood vessels to keep the transplant viable.
While I was introduced to a breast surgeon here, I’ve been considering a hospital in Texas, MD Anderson, which has a clinic dedicated to inflammatory breast cancer. When I mentioned that to someone here, she strongly encouraged me to go there for reconstruction. This is a relatively new and difficult procedure; I want to have a doctor who’s done it a lot and well. MD Anderson has that reputation. Bonus: I get a tummy tuck, something I have wanted since I had an 11½-pound baby 20 years ago. ☺ I consider that my reward for going through all this.
The undercurrent that you don’t hear much about is the uncertainty of how much time is left. The everyday-ness of life eventually overshadows it, but there it is. Of course, no one knows how much time is left. This wake-up call helps me to live each moment to its fullest and leave no wish untried. Next stop: NYC!
April 22, 2012
Ordinary Time
Treatment is over. I had the last radiation appointment on Wednesday. Now it's just healing from the effects of radiation—pretty strong in my case—and then follow-up visits here and there.
This is "ordinary" time, but it feels anything but ordinary. It's surprisingly somewhat melancholy, I suppose because there is nothing left to do but wait and hope. It will be at least a year before I can consider reconstruction because IBC has a real bad habit of coming back, most often in the scar tissue. My prognosis is good and I am very hopeful.
I have a lopsided appearance: DD on one side, slightly concave on the other. I can't wear a prosthesis until all the effects of radiation are gone. I honestly don't care. I forget about it much of the time. I will deal with the prosthesis when the time comes.
I have finally been given permission to lose the 20 pounds I gained from steroids while on chemo. Well, the steroid weight has gone—about five pounds—and the rest is from the insatiable appetite those miserable steroids gave me. This is my new "treatment," to regain my fitness and shape.
I'm going to NYC in June, and I need to be fit enough to walk the streets of Manhattan for three days. I'm SO looking forward to that! I will also manage a too-brief meeting in Connecticut with a delightful woman who was diagnosed a month after me. She and I have talked frequently (and written real snail-mail letters during my enforced silence) and we are both excited to finally meet. I'm so grateful to her son-in-law for introducing us.
This community of "survivors" is a wonderful network of support. There are 34 women and one man at my church—where I work—who are survivors of breast cancer. We reach out to each other to ask for help and to offer it. That is a hidden blessing of this terrible disease.
So now it is time to put it behind me. Let's see how long it takes for me to truly do that. Thank you all for coming along with me and supporting me so kindly through all of this journey. I'm so lucky to have you here with me.
This is "ordinary" time, but it feels anything but ordinary. It's surprisingly somewhat melancholy, I suppose because there is nothing left to do but wait and hope. It will be at least a year before I can consider reconstruction because IBC has a real bad habit of coming back, most often in the scar tissue. My prognosis is good and I am very hopeful.
I have a lopsided appearance: DD on one side, slightly concave on the other. I can't wear a prosthesis until all the effects of radiation are gone. I honestly don't care. I forget about it much of the time. I will deal with the prosthesis when the time comes.
I have finally been given permission to lose the 20 pounds I gained from steroids while on chemo. Well, the steroid weight has gone—about five pounds—and the rest is from the insatiable appetite those miserable steroids gave me. This is my new "treatment," to regain my fitness and shape.
I'm going to NYC in June, and I need to be fit enough to walk the streets of Manhattan for three days. I'm SO looking forward to that! I will also manage a too-brief meeting in Connecticut with a delightful woman who was diagnosed a month after me. She and I have talked frequently (and written real snail-mail letters during my enforced silence) and we are both excited to finally meet. I'm so grateful to her son-in-law for introducing us.
This community of "survivors" is a wonderful network of support. There are 34 women and one man at my church—where I work—who are survivors of breast cancer. We reach out to each other to ask for help and to offer it. That is a hidden blessing of this terrible disease.
So now it is time to put it behind me. Let's see how long it takes for me to truly do that. Thank you all for coming along with me and supporting me so kindly through all of this journey. I'm so lucky to have you here with me.
April 14, 2012
The Titles I've Inherited
A few months ago, while I was in the midst of chemotherapy, I was driving home with the convertible roof down. I wore a scarf to cover my bald head. As I waited for the light to change, I heard someone shout “Excuse me!” to my right. I turned to see a man a little older than I behind the wheel of a huge one-ton pickup truck. He called to me.
“Are you a survivor?”
I thought for a split second. “Still fighting!”
“You’ll beat it. I did, and you will too.” He smiled and gave me a thumbs-up.
I thanked him as the light turned green, and we both went on our way.
I hear constantly that I am a cancer “fighter.” What a picture: strong, defiant, in control. I don’t feel especially strong, just lucky at how I’m getting through this with so few problems. I am certainly not in control, but I learned some time ago that control is an illusion anyway. Defiant? You bet. I’ll own that one. I am not going gently into that good night. I visualize and pray about healing completely, and I’m making long-term plans.
To be a cancer fighter is actually a passive role: one simply walks from one appointment to the next, waiting only for what the next test reveals, and undergoing treatment as best one can. I can’t say that I’m fighting. Fighting entails facing one’s fears by making choices that entail risk. Cancer treatment certainly has its risks, but it’s not like I have much choice. I’m just walking a path so many have walked before me, many who say “me too” from further down the trail. We have in common the experience of treatment and emotional setbacks and fatigue. Some are fighters, I suppose, but I feel less like a soldier than simply one who soldiers on.
When will I take the title of “survivor?” I’m still in treatment, so I don’t feel I’ve earned it. Technically, as long as I’m alive I’m a survivor. But the term puts everything else in past tense, and I can’t do that yet. I’m not sure when that will happen. As my appearance approaches “normal” again, people will forget I’m in treatment or recovery. They won’t mean to, but it will happen. Normal is good. I can’t wait to feel the same way.
While life continues in its natural rhythms, my cadence follows the beat of cancer. Everything I see, do and feel is experienced through the filter of cancer. Only after my positive prognosis did I begin to hear other music, and it’s lovely. It’s the music of living.
“Are you a survivor?”
I thought for a split second. “Still fighting!”
“You’ll beat it. I did, and you will too.” He smiled and gave me a thumbs-up.
I thanked him as the light turned green, and we both went on our way.
I hear constantly that I am a cancer “fighter.” What a picture: strong, defiant, in control. I don’t feel especially strong, just lucky at how I’m getting through this with so few problems. I am certainly not in control, but I learned some time ago that control is an illusion anyway. Defiant? You bet. I’ll own that one. I am not going gently into that good night. I visualize and pray about healing completely, and I’m making long-term plans.
To be a cancer fighter is actually a passive role: one simply walks from one appointment to the next, waiting only for what the next test reveals, and undergoing treatment as best one can. I can’t say that I’m fighting. Fighting entails facing one’s fears by making choices that entail risk. Cancer treatment certainly has its risks, but it’s not like I have much choice. I’m just walking a path so many have walked before me, many who say “me too” from further down the trail. We have in common the experience of treatment and emotional setbacks and fatigue. Some are fighters, I suppose, but I feel less like a soldier than simply one who soldiers on.
When will I take the title of “survivor?” I’m still in treatment, so I don’t feel I’ve earned it. Technically, as long as I’m alive I’m a survivor. But the term puts everything else in past tense, and I can’t do that yet. I’m not sure when that will happen. As my appearance approaches “normal” again, people will forget I’m in treatment or recovery. They won’t mean to, but it will happen. Normal is good. I can’t wait to feel the same way.
While life continues in its natural rhythms, my cadence follows the beat of cancer. Everything I see, do and feel is experienced through the filter of cancer. Only after my positive prognosis did I begin to hear other music, and it’s lovely. It’s the music of living.
April 9, 2012
Spectator
Has it really been that long since I've updated? I'm sorry to keep you in the dark about my progress.
When I had to have the throat surgery, I didn't realize what a hit I would take with that news. It took me a while to realize that I was expecting a constant move upward toward healing, and this was a sudden drop. I was angry too that this could have been avoided.
I had a very brief taste of life with a disability. People were kind and helpful everywhere, without exception, but just about everything that called for discussion was more difficult. When I motioned I could not speak, people universally went mute and started gesturing or writing. Even after I would motion clearly that I could hear, they would nod and continue to gesture or write. I would have laughed out loud if I could have. I used a lot of notes.
My speech therapist recommended a $2.00 app called Speakit! for the iPad, and it was very helpful. I was able to type and have my words spoken by a voice of my choosing. Most of the time it was great; occasionally it mangled a word to something unrecognizable. I was able to store text on the iPad so that I could plan ahead for meetings and long conversations. I was even able to use the app on my iPhone, which was handy in restaurants or close conversations. I highly recommend it. (You can purchase voices for other languages and have them speak for you. Write in English, they speak in whatever language you select. Great for traveling!)
Even so, it was awkward for people to wait while I typed or texted. Often the conversation sped ahead and what I wanted to say became moot. It became easier to remain silent. It sure made me crystallize what I really wanted to say. I became more a spectator and less a participant.
What I missed most was being able to laugh, and I only realized that yesterday when I laughed for the first time. (I'm not allowed to whisper or yell, and my laugh is pretty loud.) I'm allowed ten minutes of speech per hour this week. It feels so good to speak again!
Now that my throat is getting better, the effects of radiation are starting to show. It's not good: some get pink skin, some get a rash; I get red skin and a very angry rash. It really hurts, and I have four more weeks to go. (That's two weeks of radiation and two weeks of delayed reaction.) However, I see this treatment prolonging my life, and four weeks of discomfort is something I can handle. Carefully. I have fashioned a one-cup bra that gives me support and won't rub on the affected area, so I'm very pleased with that.
When I had to have the throat surgery, I didn't realize what a hit I would take with that news. It took me a while to realize that I was expecting a constant move upward toward healing, and this was a sudden drop. I was angry too that this could have been avoided.
I had a very brief taste of life with a disability. People were kind and helpful everywhere, without exception, but just about everything that called for discussion was more difficult. When I motioned I could not speak, people universally went mute and started gesturing or writing. Even after I would motion clearly that I could hear, they would nod and continue to gesture or write. I would have laughed out loud if I could have. I used a lot of notes.
My speech therapist recommended a $2.00 app called Speakit! for the iPad, and it was very helpful. I was able to type and have my words spoken by a voice of my choosing. Most of the time it was great; occasionally it mangled a word to something unrecognizable. I was able to store text on the iPad so that I could plan ahead for meetings and long conversations. I was even able to use the app on my iPhone, which was handy in restaurants or close conversations. I highly recommend it. (You can purchase voices for other languages and have them speak for you. Write in English, they speak in whatever language you select. Great for traveling!)
Even so, it was awkward for people to wait while I typed or texted. Often the conversation sped ahead and what I wanted to say became moot. It became easier to remain silent. It sure made me crystallize what I really wanted to say. I became more a spectator and less a participant.
What I missed most was being able to laugh, and I only realized that yesterday when I laughed for the first time. (I'm not allowed to whisper or yell, and my laugh is pretty loud.) I'm allowed ten minutes of speech per hour this week. It feels so good to speak again!
Now that my throat is getting better, the effects of radiation are starting to show. It's not good: some get pink skin, some get a rash; I get red skin and a very angry rash. It really hurts, and I have four more weeks to go. (That's two weeks of radiation and two weeks of delayed reaction.) However, I see this treatment prolonging my life, and four weeks of discomfort is something I can handle. Carefully. I have fashioned a one-cup bra that gives me support and won't rub on the affected area, so I'm very pleased with that.
None of this has stopped me from working, although I continue to rest at home. My colleagues have always been cheerfully supportive and helpful.
Abe continues to wait on me hand and foot. He's been the best husband ever through all of this, and I love him dearly for his patience, strength, and tenderness. He has been an anchor for the whole family, all while working about ten hours a day, six days a week. There is no way I can repay him for all that he does except to love him with all my heart. I'm so lucky to have him at my side.
Cross-posted on CaringBridge.org
Abe continues to wait on me hand and foot. He's been the best husband ever through all of this, and I love him dearly for his patience, strength, and tenderness. He has been an anchor for the whole family, all while working about ten hours a day, six days a week. There is no way I can repay him for all that he does except to love him with all my heart. I'm so lucky to have him at my side.
Cross-posted on CaringBridge.org
March 7, 2012
The Last Word
Monday I saw my speech therapist. Wait: let me back up and explain WHY I have a speech therapist.
Apparently during mastectomy surgery four weeks ago, the anesthesiologist scarred my right vocal cord when intubating me. (He also left me with a fat lip and a displaced jaw that hurt when eating for a couple of weeks. Yes, I will be addressing this.) Anyway, my vocal cord is getting worse, not better.
A few days ago I stopped talking because my throat hurt and my voice was almost a whisper. I wrote on a card: “Injured throat—I shouldn’t talk. Sorry!” I got some interesting responses. Some spoke louder, but a number of people started gesturing or writing. I would have laughed if I could have, but I’ve since added “But YOU can talk—my hearing is fine.” That has worked much better and earned a lot of smiles. A few people still want to whisper for some reason, though. *sigh*
So now I have a speech therapist. He told me he wants me to continue my silence (“vocal rest”) for six to eight weeks. Six to eight weeks of my husband getting the last word every single time. Abe would be ecstatic if it weren’t for the reason this happened. He’s waited for this opportunity for years. (He continues to be wonderful to me and for me, by the way. Everyone should be this lucky.) I told him to enjoy it while he can.
I’ve been assigned three exercises to do several times a day. I call them “breathe, hum and purr.” I just purred and Sophie jumped up and ran to my side. I think I’ve found a way to call her!
My radiation therapy started today and runs for six weeks (33 daily treatments Monday through Friday), so I will be silent for the duration. The treatment itself is something of a non-event: lie on the table and wait while the machine moves and hums around you. The reactions—if any—usually start two weeks later.
While I continue to scribble short notes everywhere, I await the arrival of my New iPad (yes, that’s what it’s called) on March 16. I type much faster than I write, so I will use it for communication for these two months of silence. I will be presenting the bill for this and all related charges to my anesthesiologist.
Since I can’t talk, I cannot answer the phone down at the Damien Center each Wednesday. I’ve decided to use these Wednesdays to work on my book. I need to think about something besides cancer. This will do my heart good.
February 20, 2012
Pathology And Prognosis
I saw my oncologist this morning, and here's what you and I have been waiting to hear: she gives me a 75% chance of NO recurrence. Here's why:
I have been hit with both barrels of the shotgun with inflammatory breast cancer (everything I read says "rare, aggressive, deadly") that is also triple negative. Each of these is considered pretty lethal on its own. The pathology report showed that the sheet-like tumor in my breast tissue had left cancer cells throughout the tissue—BUT the margins of the tissue were clear by 1 cm. all around. It was contained within the tissue that was extracted. The report showed "significant" size tumors in two of my lymph nodes—BUT they had not pierced the outer walls of the nodes and were thus contained. The best news and a surprise to all was the excellent response to chemo. Triple negative normally does not respond well at all. So "contained" and "responsive" lowered the odds of recurrence considerably.
Radiation should begin in early March, if I can get my right arm to stretch properly. I started a strenuous regimen of physical therapy today. With only two weeks until the start of radiation, my physical therapist said it's a good thing I got a refill on my pain meds. Ow.
To be honest, I wasn't expecting quite this good a prognosis. I knew what good things I had going for me—catching it early, good response to chemo—but until they saw the tissue, no one would know just how good those things were. It was either sheer and incredible dumb luck or God's grace that led me to catch this stuff so early. Five weeks! Five weeks and look how far it had spread. If I had gone to my mammogram when I was supposed to we would have missed it altogether, since IBC is invisible to mammography; and it might not even have been present then. When the pink skin didn't improve after a few weeks, I decided to go and asked for "diagnostic" instead of "screening." I had no idea what IBC was or that I had classic symptoms. Thus began the whirlwind that hasn't stopped yet.
My hair is coming back in! After a couple of false starts, it appears to mean it this time. At one quarter inch it looks really dark, and I still have one spot of short bunny fur, but I’m going to let it all grow and see what happens.
I am so grateful to hear this good news. Damocles' sword still hangs overhead, but the thread holding it just became a strong cord.
I have been hit with both barrels of the shotgun with inflammatory breast cancer (everything I read says "rare, aggressive, deadly") that is also triple negative. Each of these is considered pretty lethal on its own. The pathology report showed that the sheet-like tumor in my breast tissue had left cancer cells throughout the tissue—BUT the margins of the tissue were clear by 1 cm. all around. It was contained within the tissue that was extracted. The report showed "significant" size tumors in two of my lymph nodes—BUT they had not pierced the outer walls of the nodes and were thus contained. The best news and a surprise to all was the excellent response to chemo. Triple negative normally does not respond well at all. So "contained" and "responsive" lowered the odds of recurrence considerably.
Radiation should begin in early March, if I can get my right arm to stretch properly. I started a strenuous regimen of physical therapy today. With only two weeks until the start of radiation, my physical therapist said it's a good thing I got a refill on my pain meds. Ow.
To be honest, I wasn't expecting quite this good a prognosis. I knew what good things I had going for me—catching it early, good response to chemo—but until they saw the tissue, no one would know just how good those things were. It was either sheer and incredible dumb luck or God's grace that led me to catch this stuff so early. Five weeks! Five weeks and look how far it had spread. If I had gone to my mammogram when I was supposed to we would have missed it altogether, since IBC is invisible to mammography; and it might not even have been present then. When the pink skin didn't improve after a few weeks, I decided to go and asked for "diagnostic" instead of "screening." I had no idea what IBC was or that I had classic symptoms. Thus began the whirlwind that hasn't stopped yet.
My hair is coming back in! After a couple of false starts, it appears to mean it this time. At one quarter inch it looks really dark, and I still have one spot of short bunny fur, but I’m going to let it all grow and see what happens.
I am so grateful to hear this good news. Damocles' sword still hangs overhead, but the thread holding it just became a strong cord.
February 5, 2012
Beach, Bingo, Bishop, Book, and Bald
I had my annual visit to Florida in late January. It’s always good to go home to Sarasota every year, but this trip was especially restorative. While Abe has been just wonderful to me and for me, seeing my family and good friends in a relaxing time was just what I needed.
My sister took me to see Drag Queen Bingo, a weekly show at the local dinner theatre. My cheeks hurt from smiling that night. It was an absolute blast. And get this: I won a bingo game! My prize: hair care products. The hostess—Beneva Fruitville, named for two main streets in Sarasota—was hilarious and kind in her remarks about my obvious condition. I even ended up getting a standing ovation. What a hoot.
The following week I spent a couple of nights in Ft. Lauderdale. My friend Tony twisted some arms to get his actor friends together just for me, to rehearse a reading of his new play, "A Letter From the Bishop." It is a powerful play about marriage equality from the view of gay priests, and I was thrilled to be witness to its inception. I was able to meet for the first time an online friend Tony and I had in common. David, Tony and I had a great time together, and it was all too brief.
On my way home I stopped in Ft. Myers to see my old friend Jack, who always offers supportive wisdom and the occasional swift kick. Interestingly, Jack and Tony independently pushed me to consider that the time has come for me to write a book. Talking with them about this pushed me past the subject of my cancer for the first time in a long time.
The past six months has robbed me of my effectiveness in my advocacy for people who are LGBT. I’ve had to suspend meetings of a supportive group at my church, and I had to cancel the presentation I was to make at a national convention of church educators. It has been truly disheartening to let these go, at least for now. But I don’t have to wait to start thinking about writing a book about Christian acceptance and support for LGBT people. I can work on that in my free time, some of which is coming up after surgery.
Having a renewed sense of purpose has really lifted my spirit. I continue to hear from people whose lives have been changed for the better because of what I’ve written. I am amazed and humbled whenever I hear that, and it reminds me each time how important it is to share the truth of God’s love as I see it. I know I’m not alone, but not many are speaking out. I have the privilege of being heard, so I must continue to speak. And maybe it is time for that book.
Just before I left for vacation, I could see that my hair was starting to come in, just as my eyebrows and lashes had fallen out. My new hair felt like bunny fur, but there was an occasional black wire poking up too. Well, they did say it would be different. This week it became clear that my hair was not coming in at the same rate: the back was getting long—in a relative way—and I had a hair line that was beginning to show, but it was not coming in by my forehead. I had male pattern baldness! No way I was keeping that look, so yesterday I shaved it all off again. (Note: bunny fur is especially difficult to shave.) Back to Bald Birdie until it’s all coming in. I really don’t care all that much any more.
My surgery is tomorrow (Monday) at 1:30 PM. I have no worries about that part; it’s a pretty standard procedure. I know I will struggle with my appearance afterward, but it is something I must face and move through. The day will come when it is no longer an issue.
My dear friend since forever is coming from Florida to baby me and reassure Abe. I’m not sure which job will be harder. Her presence here will be so comforting to us both, as are your continued good wishes and prayers. Thank you all for your encouragement, and keep the laughter coming!
January 9, 2012
A Fond Farewell
I had a visit with my oncologist today. Due to mild neuropathy but otherwise good results from chemo, this week’s treatment will be my last. Any further treatment besides radiation will be determined by the pathology report from February’s surgery. I will see her again about three weeks afterward. If there is the need, we will discuss current clinical trials for IBC at that time. She remains optimistic.
I will be glad to say goodbye to mood swings and, eventually, the corpulence from the steroids. The neuropathy—numbness on the soles of my feet—will fade away in upcoming months. It will be great to close the door on all the side effects of chemotherapy.
Meanwhile, surgery becomes more real to me as it approaches. Perhaps not every woman feels this way, but I am mourning the upcoming loss of my breast. Some breast cancer patients are so eager to remove the life-threatening tissue that nothing else matters. I am eager too, certainly, but there is an emotional cost to me I didn’t fully anticipate. Of course, who really thinks about it unless faced with the inevitability?
I’ve seen the pictures and they are jarring. Is it possible to be ready? I don’t know. You see, for all my ups and downs with weight and aging and childbirth and surgeries, the one thing I’ve always liked about my body is my breasts. Quite frankly, when I was young my “girls” were pretty spectacular. And they’re not so bad now either. Forgive me, but they are my vanity. That will change.
I fully understand that this is small potatoes compared to the big picture of survival and quality of life. Allow me this brief moment to grieve. I have a few more weeks of feeling whole and then it will be time to get over it and move on.
Girls, it’s been great. Wish you both could come along for the rest of the ride, but that’s life. Literally.
Posted in part to CaringBridge.org
I will be glad to say goodbye to mood swings and, eventually, the corpulence from the steroids. The neuropathy—numbness on the soles of my feet—will fade away in upcoming months. It will be great to close the door on all the side effects of chemotherapy.
Meanwhile, surgery becomes more real to me as it approaches. Perhaps not every woman feels this way, but I am mourning the upcoming loss of my breast. Some breast cancer patients are so eager to remove the life-threatening tissue that nothing else matters. I am eager too, certainly, but there is an emotional cost to me I didn’t fully anticipate. Of course, who really thinks about it unless faced with the inevitability?
I’ve seen the pictures and they are jarring. Is it possible to be ready? I don’t know. You see, for all my ups and downs with weight and aging and childbirth and surgeries, the one thing I’ve always liked about my body is my breasts. Quite frankly, when I was young my “girls” were pretty spectacular. And they’re not so bad now either. Forgive me, but they are my vanity. That will change.
I fully understand that this is small potatoes compared to the big picture of survival and quality of life. Allow me this brief moment to grieve. I have a few more weeks of feeling whole and then it will be time to get over it and move on.
Girls, it’s been great. Wish you both could come along for the rest of the ride, but that’s life. Literally.
Posted in part to CaringBridge.org
December 25, 2011
Holiday Update
It’s Christmas morning, and the house is quiet. This is the beginning of the downslide to the church’s “quiet season” of winter, having worked basically full time hours for the past several weeks.
We opened presents last night because I will be working this morning at the one service our church is offering. Then we’ll pedal off to St. Louis for three days of fun and chaos with my brother’s family. My two sisters from Florida and Alaska will also be there. This makes the first time all four siblings and eight cousins have been together in one place. It’s going to be great.
Everyone will be seeing me without hair for the first time. I’m also round as a beach ball from the steroids. Not my finest moment for family pictures, but it will pass. It will be so great to see everyone!
I’m sorry for my prolonged silence. I’ve been especially moody, and they tell me I can blame the weekly steroid infusions. Some people get really mean; I get weepy. But only three more chemo appointments!
I will be going down to Florida for a couple of weeks in January. This is an annual trip, but this one has special meaning: it will be my last hurrah before surgery. Upon my return, I will have a single modified radical mastectomy on my right side in early February. My best friend since forever is coming up from Florida to baby me for a week. It’s only a two-week recovery since no muscle is involved.
I had originally wanted both breasts removed. But the odds of cancer occurring in the other breast is less than one percent for this kind of cancer; it most often recurs in scar tissue or in a distant site. And the fact that I had lymph nodes removed on the left side years ago from melanoma makes extensive reconstruction surgery very risky. So I will wear a prosthesis until I can have reconstruction on the right side and simple surgery to “match” on the left side.
After about six weeks of recovery from surgery I will begin radiation treatments. It will be daily (Monday through Friday) for about eight weeks. Then the waiting begins for reconstruction. That will be determined by what they find in the tissue from surgery; it could be as early as six months or as long as three years, waiting to see if the cancer recurs. I may be retired by the time I get the look I had when I was younger. But hey, if I’m going through this, I’m going to have something to look forward to.
When I went to my plastic surgeon for consultation about my options, he commented that I had to have caught this cancer early. He apparently expected to see me disfigured. Early?! It was stage 3C! I was aware of pink skin for five weeks by the time I had the mammogram and biopsy. Damn, this stuff moves fast. Many doctors treat the symptoms as an infection (as I had originally thought) for months before thinking about a mammogram. No wonder it’s so deadly. And all the literature tells you to look for lumps, when IBC grows in smooth firm sheets in the skin. I was just plain lucky to have caught this when I did. I know IBC is very rare, but still we should be informed.
Well, this wasn’t much of a Christmas post, but honestly, Christmas hasn’t been much on my mind in spite of the hours I’ve put in at church. Helping others make Christmas memories has been fulfilling, but it seems like I missed it this year. That’s just the way it is; I knew it would be different and I had no expectations. I’ve just lived day to day, but I’ve had a lot of happy moments, too. And in spite of the general tone of this post, I do continue to have hope.
It will be merry at my brother’s house this evening. I can’t wait! I hope today brings laughter, joy and hope to all of you, whether you celebrate Christmas, Hanukkah, Solstice, or sales.
We opened presents last night because I will be working this morning at the one service our church is offering. Then we’ll pedal off to St. Louis for three days of fun and chaos with my brother’s family. My two sisters from Florida and Alaska will also be there. This makes the first time all four siblings and eight cousins have been together in one place. It’s going to be great.
Everyone will be seeing me without hair for the first time. I’m also round as a beach ball from the steroids. Not my finest moment for family pictures, but it will pass. It will be so great to see everyone!
I’m sorry for my prolonged silence. I’ve been especially moody, and they tell me I can blame the weekly steroid infusions. Some people get really mean; I get weepy. But only three more chemo appointments!
I will be going down to Florida for a couple of weeks in January. This is an annual trip, but this one has special meaning: it will be my last hurrah before surgery. Upon my return, I will have a single modified radical mastectomy on my right side in early February. My best friend since forever is coming up from Florida to baby me for a week. It’s only a two-week recovery since no muscle is involved.
I had originally wanted both breasts removed. But the odds of cancer occurring in the other breast is less than one percent for this kind of cancer; it most often recurs in scar tissue or in a distant site. And the fact that I had lymph nodes removed on the left side years ago from melanoma makes extensive reconstruction surgery very risky. So I will wear a prosthesis until I can have reconstruction on the right side and simple surgery to “match” on the left side.
After about six weeks of recovery from surgery I will begin radiation treatments. It will be daily (Monday through Friday) for about eight weeks. Then the waiting begins for reconstruction. That will be determined by what they find in the tissue from surgery; it could be as early as six months or as long as three years, waiting to see if the cancer recurs. I may be retired by the time I get the look I had when I was younger. But hey, if I’m going through this, I’m going to have something to look forward to.
When I went to my plastic surgeon for consultation about my options, he commented that I had to have caught this cancer early. He apparently expected to see me disfigured. Early?! It was stage 3C! I was aware of pink skin for five weeks by the time I had the mammogram and biopsy. Damn, this stuff moves fast. Many doctors treat the symptoms as an infection (as I had originally thought) for months before thinking about a mammogram. No wonder it’s so deadly. And all the literature tells you to look for lumps, when IBC grows in smooth firm sheets in the skin. I was just plain lucky to have caught this when I did. I know IBC is very rare, but still we should be informed.
Well, this wasn’t much of a Christmas post, but honestly, Christmas hasn’t been much on my mind in spite of the hours I’ve put in at church. Helping others make Christmas memories has been fulfilling, but it seems like I missed it this year. That’s just the way it is; I knew it would be different and I had no expectations. I’ve just lived day to day, but I’ve had a lot of happy moments, too. And in spite of the general tone of this post, I do continue to have hope.
It will be merry at my brother’s house this evening. I can’t wait! I hope today brings laughter, joy and hope to all of you, whether you celebrate Christmas, Hanukkah, Solstice, or sales.
November 15, 2011
Living With Uncertainty
We all live with uncertainty. We wake up each morning not knowing for sure what the day will bring; and yet we act as though it will go as planned. Most often, it does.
Every one of us hungers for certainty. It allays the fear of the unknown. We can quiet our thoughts when we know what lies ahead. That knowledge doesn’t have to be true for it to be an effective balm. How often have we been hit with the truth that belies the certainty we held for so long? And it sends us reeling until we can find our way once again.
That is what it’s like to live with cancer: no guarantees, not knowing what the future brings. I know what I hope for, and I vacillate between the highs of hope and depths of fear.
Will God answer my prayers and the prayers of so many dear friends? Yes. But will it be the answer we want to hear? We’ll see. I’ve been thinking about God’s will for me. If His plans for me include an early death, don’t expect me to like it. I have things left to do, not least of which is to watch my children grow into their adult lives and be by my husband’s side well into old age.
While living with uncertainty is sometimes frightening, most often it is enlightening. I have come to accept ambiguity as a path to knowledge. Not knowing keeps me open to new information and growth. This is especially true in my faith journey. The mystery of God unfolds continuously and my faith continues to change and mature.
In between hope and fear is the middle ground of acceptance. It brings peace because it limits expectations, the source of so much disappointment and pain.
I await that sense of acceptance about my future. I’m probably on some well-defined stage of emotional progress as I deal with my diagnosis. It is important to be allowed whatever feelings are part of my journey, even if they cause discomfort. I’m okay with all these feelings as I process them. I’m okay with being angry, sad, hopeful, enormously grateful, and uncertain—often all at once.
It’s all part of life, and I cherish every minute of it.
Every one of us hungers for certainty. It allays the fear of the unknown. We can quiet our thoughts when we know what lies ahead. That knowledge doesn’t have to be true for it to be an effective balm. How often have we been hit with the truth that belies the certainty we held for so long? And it sends us reeling until we can find our way once again.
That is what it’s like to live with cancer: no guarantees, not knowing what the future brings. I know what I hope for, and I vacillate between the highs of hope and depths of fear.
Will God answer my prayers and the prayers of so many dear friends? Yes. But will it be the answer we want to hear? We’ll see. I’ve been thinking about God’s will for me. If His plans for me include an early death, don’t expect me to like it. I have things left to do, not least of which is to watch my children grow into their adult lives and be by my husband’s side well into old age.
While living with uncertainty is sometimes frightening, most often it is enlightening. I have come to accept ambiguity as a path to knowledge. Not knowing keeps me open to new information and growth. This is especially true in my faith journey. The mystery of God unfolds continuously and my faith continues to change and mature.
In between hope and fear is the middle ground of acceptance. It brings peace because it limits expectations, the source of so much disappointment and pain.
I await that sense of acceptance about my future. I’m probably on some well-defined stage of emotional progress as I deal with my diagnosis. It is important to be allowed whatever feelings are part of my journey, even if they cause discomfort. I’m okay with all these feelings as I process them. I’m okay with being angry, sad, hopeful, enormously grateful, and uncertain—often all at once.
It’s all part of life, and I cherish every minute of it.
Cross-posted to CaringBridge.org.
November 7, 2011
Damocles' Sword
I have started the new round of weekly chemo infusions, this time with only one drug, Taxol. It’s much easier to handle than the other drugs: so far the worst side effect is double vision from dry eyes, easily fixed with eye drops. I still get sleepy, but not until 6:00 or so. I’ve been introduced by a common friend to someone with a similar diagnosis and the same treatment, and she’s having a much harder time with side effects than I am. We chat by email after each treatment. She has been decked with repeated fevers and antibiotics. She had to skip her last chemo due to low blood numbers, caused by the effect of the chemo drugs. I’ve been borderline but never so bad I had to postpone treatment.
I still suffer from brain fog but not as bad as before. My thought processes have picked up speed, but I still totally space obvious things. This is not good at work, as it burdens my colleagues to pick up the slack. I’m beginning to feel like a lead weight, so I’m programming my iPhone to remind me of tasks. It’s a lifesaver. I even lost my iPhone for a few hours. I searched and searched that house, and I had to go to work without it. I found it when I got home and immediately downloaded the Find My iPhone app.
My sister came up from Florida to visit for three days. It was so great to see her. I couldn’t join her and Sheba for a walking tour of downtown, but I did join them for the State Museum—where I saw clothes I wore in college in an exhibit about 70’s culture. Talk about culture shock.
Whenever you go to a new city, you need to visit places you can’t elsewhere, so I made sure my sister went to the Slippery Noodle Inn, a blues bar that is 150 years old—the oldest bar in the state. Later we went to Bub’s for their famous hamburger. It was featured on Man Vs. Food on some cable channel. We did NOT get the Big Ugly Burger (22 oz.)—we ate the MiniBub. Yum.
At one point I sat my sister down to talk about my diagnosis and prognosis. Triple negative breast cancer has a 70% survival rate of five years, compared to 93% of other types that are positive for at least one receptor (and therefore treatable with targeted drugs). That’s still not so bad, and I’ve beat cancer before.
When I was first diagnosed, the doctor sat down with me and Abe and carefully explained what they had learned. She wrote down notes as she talked, drawing pictures where necessary to explain growth, etc. At the end of the meeting she handed me the notes.
I went online to research the profile from the doctor’s notes: stage 3c, grade 2, triple negative. I was overwhelmed with the speed of diagnosis and treatment, and I didn’t do any more research after that. It was enough for now. But after my sister left, I finally opened a book that had been recommended by several people: Dr. Susan Love’s Breast Book. It offers as much current information about the disease and its treatment as you’re willing to read, and I felt ready to explore the intricacies of surgery.
There was a word that popped up a few times in my reading that triggered my memory, and I pulled out the doctor’s notes again. Yeah, there it was: “inflammatory.” I flipped through the book to read more about that. What I read there sent me online.
Inflammatory breast cancer (IBC) is the most aggressive type there is. It’s why I was rushed through to treatment so fast. And the five-year survival rate is 40%. The median life-span after diagnosis is three years. Only 28% make it to fifteen years. I understand that statistics are not a prognosis. While I will plan to be in that 28%, I live with the awareness that I most likely am on limited time.
This certainly strips away the trivial. Perhaps it’s just the newness of this information, but I wonder if the day will come when I do not feel Damocles’ sword hanging over my head. Every event is filtered through my new awareness, and so much does not matter.
I need to repair my relationship with my son, who is still angry over perceived shortcomings in his parents. I want my family to know they are loved. All else falls away.
I continue my advocacy for gay rights, knowing someone else is going to have to finish that battle for me. It pains me that the very time I reached my greatest effectiveness—starting a gay-straight alliance in my church, booking a presentation at a national conference—my power to be effective is being stripped from me. The GSA is on hold, and I will most likely not present at the conference.
It is not in my power to change what happens from here forward in regard to my health. So my energy will be focused on making time count. God help me do that well.
I still suffer from brain fog but not as bad as before. My thought processes have picked up speed, but I still totally space obvious things. This is not good at work, as it burdens my colleagues to pick up the slack. I’m beginning to feel like a lead weight, so I’m programming my iPhone to remind me of tasks. It’s a lifesaver. I even lost my iPhone for a few hours. I searched and searched that house, and I had to go to work without it. I found it when I got home and immediately downloaded the Find My iPhone app.
My sister came up from Florida to visit for three days. It was so great to see her. I couldn’t join her and Sheba for a walking tour of downtown, but I did join them for the State Museum—where I saw clothes I wore in college in an exhibit about 70’s culture. Talk about culture shock.
Whenever you go to a new city, you need to visit places you can’t elsewhere, so I made sure my sister went to the Slippery Noodle Inn, a blues bar that is 150 years old—the oldest bar in the state. Later we went to Bub’s for their famous hamburger. It was featured on Man Vs. Food on some cable channel. We did NOT get the Big Ugly Burger (22 oz.)—we ate the MiniBub. Yum.
At one point I sat my sister down to talk about my diagnosis and prognosis. Triple negative breast cancer has a 70% survival rate of five years, compared to 93% of other types that are positive for at least one receptor (and therefore treatable with targeted drugs). That’s still not so bad, and I’ve beat cancer before.
When I was first diagnosed, the doctor sat down with me and Abe and carefully explained what they had learned. She wrote down notes as she talked, drawing pictures where necessary to explain growth, etc. At the end of the meeting she handed me the notes.
I went online to research the profile from the doctor’s notes: stage 3c, grade 2, triple negative. I was overwhelmed with the speed of diagnosis and treatment, and I didn’t do any more research after that. It was enough for now. But after my sister left, I finally opened a book that had been recommended by several people: Dr. Susan Love’s Breast Book. It offers as much current information about the disease and its treatment as you’re willing to read, and I felt ready to explore the intricacies of surgery.
There was a word that popped up a few times in my reading that triggered my memory, and I pulled out the doctor’s notes again. Yeah, there it was: “inflammatory.” I flipped through the book to read more about that. What I read there sent me online.
Inflammatory breast cancer (IBC) is the most aggressive type there is. It’s why I was rushed through to treatment so fast. And the five-year survival rate is 40%. The median life-span after diagnosis is three years. Only 28% make it to fifteen years. I understand that statistics are not a prognosis. While I will plan to be in that 28%, I live with the awareness that I most likely am on limited time.
This certainly strips away the trivial. Perhaps it’s just the newness of this information, but I wonder if the day will come when I do not feel Damocles’ sword hanging over my head. Every event is filtered through my new awareness, and so much does not matter.
I need to repair my relationship with my son, who is still angry over perceived shortcomings in his parents. I want my family to know they are loved. All else falls away.
I continue my advocacy for gay rights, knowing someone else is going to have to finish that battle for me. It pains me that the very time I reached my greatest effectiveness—starting a gay-straight alliance in my church, booking a presentation at a national conference—my power to be effective is being stripped from me. The GSA is on hold, and I will most likely not present at the conference.
It is not in my power to change what happens from here forward in regard to my health. So my energy will be focused on making time count. God help me do that well.
October 12, 2011
Overheard: Survivor
It was warm and sunny the other day, and I was driving my convertible with the roof down. (Sophie was enjoying the ride harnessed in the back seat.) I had on a simple scarf as I waited with other cars at a red light. Somewhere to my right, I heard someone speak out.
"Excuse me!"
I looked around and saw a man about my age at the wheel of a huge six-wheel pickup truck, looking at me.
"Are you a survivor?"
It took me a second. "I'm still fighting!"
"You'll make it. I'm a survivor." He smiled and gave me a thumbs up.
"Thank you!" I smiled. The light changed and we moved onward on our separate ways.
October 10, 2011
Great Update!
I am finishing my fourth course of chemo, which will bring a new wave of cluelessness. But that's okay, because today's exam showed NO MEASURABLE TUMOR in my breast—and the last exam said the same about the node tumor. The large tumor measured six by seven centimeters at the start of chemotherapy, and the node was three centimeters. The kind of cancer I have (triple negative) is not always responsive to chemo, so we didn't know what to expect.
Ladies and gentlemen, it's working. I am so thankful and full of hope for my future. Hope is the stuff of life.
October 8, 2011
Tabula Rasa
It’s three days before my fourth and last A/C chemo. (After that I will start a 12-week regimen of weekly Taxol infusions.) As I reported briefly on Facebook, the chemo and your prayers are continuing to work! The node tumor is undetectable and the large tumor continues to shrink about a centimeter per infusion. Can’t wait to see the progress in Monday’s exam.
I’m feeling okay today. My energy came back yesterday and will last until Monday afternoon. The energy drain is due to my very low hemoglobin: I’m quite anemic. It’s like climbing at 10,000 feet every day with no acclimation. That was no surprise, but I didn’t think about the cost of low oxygen on the brain. I’m slower but okay in the moment, and today’s energy is giving me enough brain cells to string some sentences together. But when I try to look back to the past or forward to the future—anything in the “not now”—it’s difficult. Here’s a picture to show you what I see:
Yeah, I don’t see anything either. And I’m not kidding. If I don’t have a picture to wrap around an idea, it’s just not there right now. And I get another dose on Monday of the stuff that takes it away. As long as it’s taking away the cancer with it, I can certainly live with that. I’m spending long stretches of time with literally nothing on my mind. So this is what it’s like to be a guy. ;)
My colleagues and volunteers continue to be wonderfully patient. I have instantly forgotten a question just asked and had to have it repeated. At least I could answer—although now I could not tell you what that question was for the life of me. I am thankful that pretty much all of my responsibilities are for events I’ve done for years, so my mental faculties aren’t being tested too much.
My greatest concern—after my health—is for the presentation I’m supposed to make in February at the national convention for Presbyterian educators. It’s a big deal, the first of its kind, addressing children and sexual orientation and gender identity. I need to be there. But this month was supposed to be the time I spent writing an elementary curriculum to be used in November at my church—with my bosses’ blessing. And today was the first day in weeks I could think long enough to put two sentences together. It all fades away in three days with my next dose.
I’m so afraid it’s not going to happen. I won’t cancel yet, and I might still get a slot for 2013; but this is the year for this subject in our denomination! Dammit, I need to do this, and I will be upset if I can’t. Yeah, I know I have a good reason. I don’t care. This is important. Someone needs to be talking to our church’s educators on this issue, and this year it was to have been me.
Cancer sucks.
September 22, 2011
What Day Is This Again?
When I haven’t been working, I’ve been sleeping. More than a week has passed by, and I’ve slept it away. A friend pointed out that actually I’ve been fighting cancer. So yeah, I’ll own that.
I have been waiting to post something that doesn’t sound like a whinefest. Waiting hasn’t worked, so here it is.
I lost most of my hair on Friday, so on Saturday Abe lovingly and gently shaved my head, cleaned it up with his electric razor and finished it off with a Three Stooges buffing. I thought I would look like Mrs. Potato Head, but really I look like Elmer Fudd.
Now I have to fuss with scarves and hats. Do you know you have to iron those scarves every time you use them?! I’m getting advice from a number of my gay buds to ramp it up with operatic eyebrows and saturated lip colors. Me? I’m a beach bum! My eyebrows are disappearing, though, so I’m using brown shadow to fill them in. At least you can see them now. I do have two fedoras and a bunch of scarves to mess with when I have to go out in public.
I can’t get rid of this fool cold. In a coughing fit that scared my colleagues, I apparently cracked or broke a rib. (The sixteen-year-old physician’s assistant wasn’t sure.) Now I have codeine to stop the cough—and put me back to sleep. I’ve got a brand new batch of white blood cells, courtesy of a booster shot, that just might take care of this cold before next Monday’s chemo.
I still have cards, emails and meals on a regular basis that make me laugh, cry and be grateful for such good friends. (Wait. The meals do not make me cry.) With my colleagues’ and volunteers’ patience and help, I have been able to maintain my duties at work. Two big annual events this weekend will continue the busy “season” of the year at church, and they’re coming together well.
So in spite of all my whining, I’m still coming out way ahead. I remain so grateful for all of your wonderful wishes, prayers, and acts of kindness. It is the stuff of dreams.
Cross-posted on CaringBridge.org.
September 15, 2011
Hope And Expectations
I’ve learned to distinguish between hope and expectations. While both feelings anticipate an outcome, hope is the one to which I must cling because it embodies faith in a desirable conclusion. Hope is amorphous and resilient, adapting to moments, emotions and setbacks with renewing energy; it is the essence of God’s grace made present in everyday events. Expectations have definitive boundaries, and if they are not met, they shatter. Expectations at best offer satisfaction but more often can lead to sorrow, while hope remains uplifting even in the hardest of times. Keep those good wishes, prayers and laughter coming! They bring hope.
Cross-posted on CaringBridge.org
September 13, 2011
Genuinely Good News
I had my second chemo yesterday; two down, two to go of this particular regimen. (Then more of a different kind.) Before I sat for my infusion, I went through all the status tests: blood, weight, tumor check.
Everything looked good, so in spite of my cold and very low fever (99.2°), I was given the go-ahead. But the GREAT news is that my tumors were significantly smaller than when I had my first chemo two weeks ago. It's working! Good news too, that they gave me a different anti-nausea drug that really works. I'm somewhat flaky—two martinis—and tired, but this is such an improvement that I feel almost like dancing. It's those martinis.
Last night I checked the shower drain as I have every night this week. Uh oh. Lots of extra hair. It won't be long—literally. So I went online and ordered a hoodie that reads "I fight like a girl."
Damn straight.
Everything looked good, so in spite of my cold and very low fever (99.2°), I was given the go-ahead. But the GREAT news is that my tumors were significantly smaller than when I had my first chemo two weeks ago. It's working! Good news too, that they gave me a different anti-nausea drug that really works. I'm somewhat flaky—two martinis—and tired, but this is such an improvement that I feel almost like dancing. It's those martinis.
Last night I checked the shower drain as I have every night this week. Uh oh. Lots of extra hair. It won't be long—literally. So I went online and ordered a hoodie that reads "I fight like a girl."
Damn straight.
September 8, 2011
Almost Normal
I have a cold. No big deal; every fall the germs filter down like leaves. Except THIS cold sent me to the emergency room last night. My immune system is compromised, and whenever I have a temperature of 100.4° or higher, I must go to the ER and get IV antibiotics.
I spent three hours getting poked, infused and tested. I am thrilled to report my white blood cell count was very high, enough that I could go back home with my new antibiotics. Now that I’m home, it’s an almost normal treatment.
I am feeling less flaky these past few days, more like having had one martini than three. This is a good thing since I have few enough filters anyway. A little off-balance: almost normal.
My house is coming together after being ignored for a long time. I was talking to a longtime friend about my sudden unease with circumstances that didn’t bother me so much a month ago.
“It’s control,” she said. “Your life is out of control, and you want to have something you can manage. You’re aiming in on your house.” She nailed it. Fixing up the house seems like such a mundane thing; but it is bringing me a sort of peace amid the chaos. It feels almost normal.
Do you have any idea how wonderful “normal” is? The commonplace, tedious details of everyday living are beautiful markers of normalcy when the usual becomes unusual. To know what to anticipate, to be able to take things for granted, to have expectations met in an ordinary, typical way: ignorant bliss.
But there’s another side to this unusual situation: the outpouring of simple acts of kindness is an overwhelming balance on the scale against chaos. It is my privilege to be in a position of service, helping others. Now it is my turn to allow that privilege to others, that they may express the grace that awaits circumstances such as these. There is no true balancing of the scale when it comes to grace; it simply is. And the glorious part of it with these remarkable people stepping up in my life: it’s almost normal.
Cross-posted on CaringBridge.org
I spent three hours getting poked, infused and tested. I am thrilled to report my white blood cell count was very high, enough that I could go back home with my new antibiotics. Now that I’m home, it’s an almost normal treatment.
I am feeling less flaky these past few days, more like having had one martini than three. This is a good thing since I have few enough filters anyway. A little off-balance: almost normal.
My house is coming together after being ignored for a long time. I was talking to a longtime friend about my sudden unease with circumstances that didn’t bother me so much a month ago.
“It’s control,” she said. “Your life is out of control, and you want to have something you can manage. You’re aiming in on your house.” She nailed it. Fixing up the house seems like such a mundane thing; but it is bringing me a sort of peace amid the chaos. It feels almost normal.
Do you have any idea how wonderful “normal” is? The commonplace, tedious details of everyday living are beautiful markers of normalcy when the usual becomes unusual. To know what to anticipate, to be able to take things for granted, to have expectations met in an ordinary, typical way: ignorant bliss.
But there’s another side to this unusual situation: the outpouring of simple acts of kindness is an overwhelming balance on the scale against chaos. It is my privilege to be in a position of service, helping others. Now it is my turn to allow that privilege to others, that they may express the grace that awaits circumstances such as these. There is no true balancing of the scale when it comes to grace; it simply is. And the glorious part of it with these remarkable people stepping up in my life: it’s almost normal.
Cross-posted on CaringBridge.org
September 2, 2011
The Music Is Back
Thanks to the urging of kind friends, I took your advice to try the music again, and it's working. My choices are more low-key, but then that's always been my bent anyway.
I'm feeling better, thank you.
Monday afternoon, the chemo infusion was relatively benign, and I had my "chemo buddy" there to chat about possible reactions and how she dealt with them. Ben was working that evening, so my next-door neighbor Dee came to babysit and grade her math papers. She was wonderful. My reactions changed hourly, and it was very strange. Ultimately I had to hit the vomitorium, but she didn't blink—she had the cold cloth ready before I was. It was a rough night, but I've had worse with food poisoning; so while it was unpleasant it wasn't too scary. Dee didn't leave until after I had gone to sleep.
Things calmed down as the hours passed, and I was able to eat on Wednesday. I've had five meals in a row now—all from loving friends who cooked up some wonderful food—and I'm feeling SO much better now. I'm told the flaky feeling that lingers only gets worse, but who's going to notice? I was pretty flaky before this started, so I don't think I can count this as a side effect.
I had my hair cut very, very short yesterday. I can expect to lose it all within a week or two, and experienced friends tell me it's less traumatic to lose short hair. Now I'll be sharing a fashion look similar to many of my gay buds. Just call me "sir." :) As I experiment with headgear, I might share some of the dressing room delights.
I write more freely here, but I do have a CaringBridge.org web page that has been set up by a loving and very organized friend of mine. If you want access to those posts, please email me at birdoparadise AT sbcglobal DOT net and I'll give you the details. It has more of the day-to-day info that isn't as revealing but gives the ongoing process.
The music is back, dear friends, and you never left. I continue to receive life-giving messages of love, concern and support—and laughter. Keeps those laughs coming! I love every one of them.
Big hugs to all of you.
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