How can I describe what it feels like to be pulled from my chemo chair to be told that I have spots in my bones and masses on my liver? What can I compare that to? I can compare it to the moment when my brother and sisters and I had to remove support from my mother as she lay in a stroke-induced vegetative state, and then help her die. That would hit it. Like this, that was a long extended period of pain. Painful, horrifying, never ending.
For the last many days I've been living with a giant sword over my head. Is there cancer in my liver? Are the masses on my liver just annoying hemangiomas? What the hell is going on? Thankfully my nephew Josh and his wife Niki flew in on Thursday and stayed the weekend. That helped keep the weekend a little less hellish. But I have been breaking into tears at surprise to others moments, and at this point if a dirty homeless man offered me a hug, I would take it and hold on hard.
Soon I should know the whole story. Today I had a thoracic MRI to get further info on the bones, although the oncologist says this is less concerning than the liver. Tomorrow (Tuesday) my doctor was able to get me an appointment at Suburban Hospital for an ultrasound guided liver biopsy. When my uncle Mike asked what they would be doing to me during this procedure, I replied that I didn't know or really care. I just do what they tell me at this point. Wednesday I have an MRI of the lumbar and cervical spines (more bone stuff). And finally on Thursday, I start chemo with a cocktail of Taxol and Herceptin - thank God.
So even though I don't know what is going on with my liver, I do know I'm starting treatment. I'm actually afraid to even find out about the liver. Every call I've been getting in the last month has pretty much started with the phrase, "I've got bad news for you." Maybe they can change it up a bit and say something like, "Do you like green M&M's? I do." and then go into their cancer result patter. That would at least be a nice change.
Monday, January 30, 2012
Friday, January 27, 2012
Update from Groundhog Day from Hell
Doctor just called. They compared the two CT scans and apparently the size of the spots have changed and their are more spots so need to get a liver biopsy as soon as possible.
Groundhound Day from Hell
Yesterday was supposed to be my first day of chemo. The port was placed in me on Wednesday morning, the ultrasound echiocardiogram done right after (apparently the best output reading of a heart this tech has seen is 75 and I'm a 70 - yeah, heart). Testing done, ready to go.
I get to the chemo facility at 9am and vitals taken. My friend Lisa is with me for this first servicing, so we're then led into the private room where the nurse can go over the details of chemo with me. At that point I'm summoned to the nurse's station for a phone call. It is the nurse practictioner from my oncologist's office. She's telling me we won't be starting chemo today, that they found areas on the bone and liver in the bone scan and CT with contrast done on Tuesday -- they just got the results that morning. She's asking me to drive north to Sibley Hospital to come in an talk with the doctor (the doctor splits her time between Sibley and GWUH). I break into sobs. Sobs, I'm telling you sobs.
All through this experience I have felt angry, scared, and confused but never hopeless. At this point I felt hopeless. Through my sobs I try and ask questions. "Where are the spots? How big are they?" She tells me she doesn't have the report. What? WTF? She can't give me details but she can tell me this shit has spread.
She keeps telling me to drive up to Sibley to meet with the doctor, a 30 to 40 minutes drive on freeway that I would do while wildly upset. I refuse. I say I have no one to drive (my friend Lisa can't drive) and I can't be on a freeway in this condition. She tells me there will be more tests. I beg her to get them set up asap, I ask if there is anything I can do to get these tests scheduled. She says no. Wait. It's always waiting. She tells me to go home and the doctor will call me there.
I go back into the secluded room and sob more and more, nurses and social workers coming in to try and comfort me. In my head I'm splitting up my household and finalizing details. After I calm down enough to walk, Lisa and I head back to my house to await the doctor's call. We wait for several hours.
The minute my nephew and his wife arrive at my house, having just flown in from Wisconsin (God bless them), the doctor calls. She has a much better approach then her nurse practictioner. She tells me the spots on the bones are on the right back ribs and could be simple degeneration (old lady bones). They'll do a spine MRI to rule cancer out there and she's not so worried about those.
The mass on the liver she is concerned about. I tell her that I had just had a CT with contrast on my abdomen in September 2011 because they had seen spots on my liver when they'd done an ultrasound for possible gallstones. That test showed these to be benign hemangiomas (old lady liver). Oh, she says, can you get those films so we can compare with the latest scans? If they haven't grown, we're less concerned, but we'll still do an MRI of the liver. I tell her that she can stick me into any machine she wants for testing, I will happily go. The first nephew duty Josh performs is to drive me to pick up films and then drop them off at GWUH radiology. God bless nephew.
I also email my fabulous friend at the National Cancer Institute, Nico, and he tells me that bone metastasese tend to go to the arms, legs and pelvis, not ribs. And that comparing the CT's will tell us much. Again, I love that man. I've told several that I will marry him or give him free sex, but apparently he is gay. I then offered to find him a boyfriend. He already has a lovely partner. I'm lost with what to do for him at this point. I owe him my sanity. Perhaps I can clean their lovely house for the rest of my days. Whatever he wants, he's got it.
The good news? It sounds like I still might get to live. So if you all were thinking of what you'll get after I die, back off suckas.
I get to the chemo facility at 9am and vitals taken. My friend Lisa is with me for this first servicing, so we're then led into the private room where the nurse can go over the details of chemo with me. At that point I'm summoned to the nurse's station for a phone call. It is the nurse practictioner from my oncologist's office. She's telling me we won't be starting chemo today, that they found areas on the bone and liver in the bone scan and CT with contrast done on Tuesday -- they just got the results that morning. She's asking me to drive north to Sibley Hospital to come in an talk with the doctor (the doctor splits her time between Sibley and GWUH). I break into sobs. Sobs, I'm telling you sobs.
All through this experience I have felt angry, scared, and confused but never hopeless. At this point I felt hopeless. Through my sobs I try and ask questions. "Where are the spots? How big are they?" She tells me she doesn't have the report. What? WTF? She can't give me details but she can tell me this shit has spread.
She keeps telling me to drive up to Sibley to meet with the doctor, a 30 to 40 minutes drive on freeway that I would do while wildly upset. I refuse. I say I have no one to drive (my friend Lisa can't drive) and I can't be on a freeway in this condition. She tells me there will be more tests. I beg her to get them set up asap, I ask if there is anything I can do to get these tests scheduled. She says no. Wait. It's always waiting. She tells me to go home and the doctor will call me there.
I go back into the secluded room and sob more and more, nurses and social workers coming in to try and comfort me. In my head I'm splitting up my household and finalizing details. After I calm down enough to walk, Lisa and I head back to my house to await the doctor's call. We wait for several hours.
The minute my nephew and his wife arrive at my house, having just flown in from Wisconsin (God bless them), the doctor calls. She has a much better approach then her nurse practictioner. She tells me the spots on the bones are on the right back ribs and could be simple degeneration (old lady bones). They'll do a spine MRI to rule cancer out there and she's not so worried about those.
The mass on the liver she is concerned about. I tell her that I had just had a CT with contrast on my abdomen in September 2011 because they had seen spots on my liver when they'd done an ultrasound for possible gallstones. That test showed these to be benign hemangiomas (old lady liver). Oh, she says, can you get those films so we can compare with the latest scans? If they haven't grown, we're less concerned, but we'll still do an MRI of the liver. I tell her that she can stick me into any machine she wants for testing, I will happily go. The first nephew duty Josh performs is to drive me to pick up films and then drop them off at GWUH radiology. God bless nephew.
I also email my fabulous friend at the National Cancer Institute, Nico, and he tells me that bone metastasese tend to go to the arms, legs and pelvis, not ribs. And that comparing the CT's will tell us much. Again, I love that man. I've told several that I will marry him or give him free sex, but apparently he is gay. I then offered to find him a boyfriend. He already has a lovely partner. I'm lost with what to do for him at this point. I owe him my sanity. Perhaps I can clean their lovely house for the rest of my days. Whatever he wants, he's got it.
The good news? It sounds like I still might get to live. So if you all were thinking of what you'll get after I die, back off suckas.
Tuesday, January 24, 2012
Procedure Packing
This cancer kid packs light for procedures. An apple for when I can finally eat, topical lidocaine and bandages to numb the areas where needles go (can't feel it, focus less on it), doctor's orders, a book, and Atavan. Can't forget Atavan.
But one item I don't need to pack. Lisa just shows up and sits with me, distracting me, and occasionally telling a technician, "Believe her. She's needle phobic. You need to lay her down before you approach with those sharp objects."
I travel so light and with such speed, moving lithely through the levels of George Washington University Hospital, I wonder if they'll make a video game of me. Soozie's Super Cancerous Breasts and Their Spectacular Fall. Poor breasts.
Here's my question though, if in the game we run into an obstacle and someone needs to be ported across a stream, will I be porting Lisa or will she be porting me. Although Lisa is a lovely light thing, she is a grown woman, so I might have to start lifting weights if that's gonna happen.
Sunday, January 22, 2012
And the Panic Sets In
As long as I have something to do, I'm okay. Or at least I can act like I'm okay. Call the doctor, call the insurance company, talk to human resources, and on and on and on. But now I've got nothing to do but wait.
Wait for the bone scan and CT on Tuesday. Wait for the ultrasound echocardiogram on Wednesday. Wait for the port placement on January 31st. And then wait for my first treatment of chemo. I have time for real panic. Panic that cuts my breathing short, knots my muscles, makes me sick.
People tell me to take it one thing at a time, one procedure at a time. But panic has me seeing the next two weeks as one big block of procedures. I have no idea how to handle all of this. No idea how to break things into tinier bits. I just wish the medical offices had pieced all of this into smaller servings and meted it out to me one phone call at time.
"Hello, Susan, can you come in for your bone scan?"
"Hello, Susan, can you come in for your CT?"
I hate knowing all the next steps to come because then my mind focuses, obsesses, fills with fear. But when someone said to me after finding out I'd have to do 4 months of chemo, "Oh, my God. You have to go through chemo. How horrible." the only response I could think to say was, "Well, it's better than dying of cancer." And it is.
Wait for the bone scan and CT on Tuesday. Wait for the ultrasound echocardiogram on Wednesday. Wait for the port placement on January 31st. And then wait for my first treatment of chemo. I have time for real panic. Panic that cuts my breathing short, knots my muscles, makes me sick.
People tell me to take it one thing at a time, one procedure at a time. But panic has me seeing the next two weeks as one big block of procedures. I have no idea how to handle all of this. No idea how to break things into tinier bits. I just wish the medical offices had pieced all of this into smaller servings and meted it out to me one phone call at time.
"Hello, Susan, can you come in for your bone scan?"
"Hello, Susan, can you come in for your CT?"
I hate knowing all the next steps to come because then my mind focuses, obsesses, fills with fear. But when someone said to me after finding out I'd have to do 4 months of chemo, "Oh, my God. You have to go through chemo. How horrible." the only response I could think to say was, "Well, it's better than dying of cancer." And it is.
Wednesday, January 18, 2012
The Shit Keeps Rolling In
I met with two surgeons and a medical oncologist today. Here's the gist:
I feel like I've chosen an excellent doctor and medical oncologist. Dr. Christine Teal at George Washington University Hospital will be my breast surgeon, and thank God these places have what is called a breast care navigator to help coordinate all the tests and procedures (this duty alone can kill a patient). I also met with Dr. Hernan Vargas at Inova Fairfax and he was excellent as well. But unfortunately, the many drives I would have to make to Fairfax (about 45 minutes) for the many appointments would have only added to the frustration.
Tomorrow is the next biopsy and hopefully next week will be the various scans and a heart echocardiogram, along with blood work, to make sure my heart and body are healthy enough for chemo. Finally, they'll put a port in for easy access for chemo -- I've already told the oncologist that I am extremely needle phobic and it'd be better for everyone involved if I were under conscious sedation for this part. I often have a hard time convincing people that I really will faint if you poke me -- I've been known to faint while laying down -- but this doctor got the point right away. Thank God.
So I'm exhausted and grateful to my friend Jo Ann for coming with me for all 10 hours of this day. As promised I fed her well (Founding Farmers on Pennsylvania Avenue).
I'm just hoping this is the end of the shit rolling in. I could use a little good news for Christ sake.
- The larger tumor is in the left breast and is too close to the pectoral muscle, so chemo and herceptin comes first in order to shrink the tumor;
- After 4 months of chemo (so long to my hair), surgery, most likely a bilateral mastectomy and hopefully reconstruction, will be done at the same time.
I feel like I've chosen an excellent doctor and medical oncologist. Dr. Christine Teal at George Washington University Hospital will be my breast surgeon, and thank God these places have what is called a breast care navigator to help coordinate all the tests and procedures (this duty alone can kill a patient). I also met with Dr. Hernan Vargas at Inova Fairfax and he was excellent as well. But unfortunately, the many drives I would have to make to Fairfax (about 45 minutes) for the many appointments would have only added to the frustration.
Tomorrow is the next biopsy and hopefully next week will be the various scans and a heart echocardiogram, along with blood work, to make sure my heart and body are healthy enough for chemo. Finally, they'll put a port in for easy access for chemo -- I've already told the oncologist that I am extremely needle phobic and it'd be better for everyone involved if I were under conscious sedation for this part. I often have a hard time convincing people that I really will faint if you poke me -- I've been known to faint while laying down -- but this doctor got the point right away. Thank God.
So I'm exhausted and grateful to my friend Jo Ann for coming with me for all 10 hours of this day. As promised I fed her well (Founding Farmers on Pennsylvania Avenue).
I'm just hoping this is the end of the shit rolling in. I could use a little good news for Christ sake.
Monday, January 16, 2012
The Kindness of Strangers
My lovely friend Sheila has a friend who is an MD at the National Cancer Institute. I do not know this man, have never met him. But he has taken the time to read my test results (I scanned and emailed them to him) and discuss my prognosis. According to Nico the kindest doctor in the world, I am most likely stage II and because the lymph nodes do not show as enlarged on the MRI, my prognosis is very good.
The most I am likely to lose are my breasts. But due to the wonders of modern breast reconstruction, my breasts will be rebuilt. They will be bionic, they will be better . . . stronger . . . faster. Well, not faster. But they will look perky even when I am 90. As I told Gillian, a survivor in California who is about to start breast reconstruction, she will be the most popular girl in the nursing home and so will I.
The worst part of getting cancer is this waiting and this silence from the doctors. Silence that I can fill with fears of my inevitable death, where I can imagine that the pain on my right side is the cancer spread to my kidneys, where I don't know what I am fighting and how bad it is going to hurt me.
But thanks to the incredible kindness of a stranger, I am calmer now. As Jennifer put it, another survivor who is going through her second round of breast cancer (first time was 15 years ago, and now it's back), "The first time I got breast cancer, I was afraid I was going to die. The second time, I was just annoyed."
I'm hoping to being merely annoyed soon rather than terrified. And I'm hoping to never go through this again.
And Nico, the stranger who offered a wonderful and unexpected kindness to a frightened woman, he will be fed tasty foods and treats by me for the rest of his life. As soon as I meet him.
The most I am likely to lose are my breasts. But due to the wonders of modern breast reconstruction, my breasts will be rebuilt. They will be bionic, they will be better . . . stronger . . . faster. Well, not faster. But they will look perky even when I am 90. As I told Gillian, a survivor in California who is about to start breast reconstruction, she will be the most popular girl in the nursing home and so will I.
The worst part of getting cancer is this waiting and this silence from the doctors. Silence that I can fill with fears of my inevitable death, where I can imagine that the pain on my right side is the cancer spread to my kidneys, where I don't know what I am fighting and how bad it is going to hurt me.
But thanks to the incredible kindness of a stranger, I am calmer now. As Jennifer put it, another survivor who is going through her second round of breast cancer (first time was 15 years ago, and now it's back), "The first time I got breast cancer, I was afraid I was going to die. The second time, I was just annoyed."
I'm hoping to being merely annoyed soon rather than terrified. And I'm hoping to never go through this again.
And Nico, the stranger who offered a wonderful and unexpected kindness to a frightened woman, he will be fed tasty foods and treats by me for the rest of his life. As soon as I meet him.
Sunday, January 15, 2012
The Cancer Effect
I went to dinner with several friends on Saturday night, seven of us sitting around the table at a sushi restaurant. Our bills came at the end of the meal and everyone pulled out wallets, cash, signed credit card receipts. It took me a few moments before I noticed I didn't have a bill. My friend Thaura had absconded my check and was paying for my meal. No particular reason. She just paid for my dinner.
Well, there was a reason. It was because I have cancer. This has been happening a good amount lately. The times I've gone out to dinner with friends, I suddenly find my portion of the bill paid. I go to a friend's house and walk out with a new, lime green plush throw (thanks Jo Ann and Karin).
I am calling this the cancer effect. People in their compassion for my pain, want to help somehow so they buy me things.
I feel slightly guilty about people treating me, but then again it's fun (it's nice to have a moment of surprise in the midst of cancer hell). I've begun to take advantage of the cancer effect. On arrival at Jo Ann and Karin's house tonight for dinner, I walked into the apartment and announced. "Sorry I don't have a hostess gift. I have cancer." Why not use the cancer excuse, make it work for me.
While it is a wonderful gesture to buy me dinner, or give me small gifts, it's not necessary. I am just so grateful for the support. I had a moment last night where I thought to myself, what will happen once I'm better? Will all these people go away?
And then I thought, no, they'll still be here. They just won't buy me shit. And I'm ok with that.
Well, there was a reason. It was because I have cancer. This has been happening a good amount lately. The times I've gone out to dinner with friends, I suddenly find my portion of the bill paid. I go to a friend's house and walk out with a new, lime green plush throw (thanks Jo Ann and Karin).
I am calling this the cancer effect. People in their compassion for my pain, want to help somehow so they buy me things.
I feel slightly guilty about people treating me, but then again it's fun (it's nice to have a moment of surprise in the midst of cancer hell). I've begun to take advantage of the cancer effect. On arrival at Jo Ann and Karin's house tonight for dinner, I walked into the apartment and announced. "Sorry I don't have a hostess gift. I have cancer." Why not use the cancer excuse, make it work for me.
While it is a wonderful gesture to buy me dinner, or give me small gifts, it's not necessary. I am just so grateful for the support. I had a moment last night where I thought to myself, what will happen once I'm better? Will all these people go away?
And then I thought, no, they'll still be here. They just won't buy me shit. And I'm ok with that.
Meeting with the Surgeons
I'll be meeting with two breast surgeons on Wednesday, 1/18/2012. Both are recommended and are publishing in medical journals. So the difference will be which doctor has the best bedside manner and a system set up to help patients get throughwhat I like to call this intro into hell of cancer. Frankly, the only doctor who has actually spoken honestly to me at this point is a cancer researcher at NIH who is a good friend of my friend Sheila (God bless you, Nico).
I've also spoken to several breast cancer survivors so I am more confident that this won't kill me but merely take my breasts and make me feel like crap for a while. I'm good with that. As I've mentioned to several folks, my breasts have never done anything for me, not even buy me dinner. So tata to the tatas as my friend Joan coined the phrase.
I've never been so grateful to be a drunk (at least a recovering one). Friends in AA, and friends I have outside of AA, have swarmed forward with offers of help. As my father said to me recently, "You can't do this alone." He's right. So instead of continuing my stupidly typical pattern of doing it alone (note incident last summer where I carried two 80 pound AC units up the stairs, resulting in sciatica), I will ask people to help, take help that is offered, and swallow my pride and concerns of "being a bother." That pattern has done me more harm than good.
I will know more on Wednesday. I've been told that once I meet with the surgeons, things will move very quickly. I'm good with that. The sooner these petri dishes of cancer are gone, the better.
I've also spoken to several breast cancer survivors so I am more confident that this won't kill me but merely take my breasts and make me feel like crap for a while. I'm good with that. As I've mentioned to several folks, my breasts have never done anything for me, not even buy me dinner. So tata to the tatas as my friend Joan coined the phrase.
I've never been so grateful to be a drunk (at least a recovering one). Friends in AA, and friends I have outside of AA, have swarmed forward with offers of help. As my father said to me recently, "You can't do this alone." He's right. So instead of continuing my stupidly typical pattern of doing it alone (note incident last summer where I carried two 80 pound AC units up the stairs, resulting in sciatica), I will ask people to help, take help that is offered, and swallow my pride and concerns of "being a bother." That pattern has done me more harm than good.
I will know more on Wednesday. I've been told that once I meet with the surgeons, things will move very quickly. I'm good with that. The sooner these petri dishes of cancer are gone, the better.
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