I also went to my follow-up today. The therapist measured my arm again and the swelling has gone down a bit. She's very glad to see this. It means I am 'responding well' to compression.
I am now wearing a more permanent sleeve, made out of that heavy-duty panty hose one sees advertised in coupon additions to the newspaper.
Overall, I'm very hopeful, too, that this lymphedema will reverse. I have plenty more to tell you about, and I know you're all dying to know how one "drains" one's own arm. All in due time.
Monday, January 18, 2010
Live from the Chemo Barn!: Down the Road I Go
(Written while there this morning, but posted after getting home.)
I’m not here for chemo, of course. Just an early morning zap, and then a visit with Dr. Science, and then my Herceptin.
About the zap: Today was the last day for treatment to the larger area. I did 28 of these, consisting of 3 zaps each, resulting in a rectangle-shaped 2nd-3rd degree burn on my chest wall, with a few trailing burns over my shoulder. The other result, I say with great hope, is that any remaining cancer cells hovering near the tumor were burned crispy.
My last 5 treatments will be an electron treatment focused closely along my scar. “So far it’s been photons,” Dr. Tanner said.
I’m glad someone bothered to study physics.
They’ve rearranged the chemo barn since last I stopped by. They took apart those rows of 3 chairs and turned the whole room into pairs only, each chair tilted towards its partner. I’m not going to call it cozy, but it is much improved.
Other improvements: the pharmacist. He is a tall guy, 30-something, and he works in the room behind the nurses’ desk, preparing our various bags of drugs. Before, he had a hairy neck, scruffy face, and he wore sweatpants and t-shirts. After, he is clean-shaven—even the neck!—and he’s wearing a crisp set of scrubs.
Before and after what?
Before and after I commented to one of the nurses about “that guy” seeming a little creepy, and why didn’t he have to follow the same dress code as everyone else who works here?
It wasn’t a complaint. It was a comment. Delivered with a smile. I think.
Lest we give into the fallacy of the false cause, I should emphasize that the nurse didn’t say to me right then, “You’ve got a point: I’ll mention it to management.”
Am I going to follow up to learn what really happened? No.
Ah, I’m back now from my appointment with Dr. Science. Only, he was on call today at Penrose hospital, so I instead saw Rose Gates, the nurse practitioner. Remember her? When she walked in the door, I thought, “Doh! We never reached consensus on what to call her!”
I had some questions about future treatment that only my treating physician could answer, like when would I do a routine scan? And when would I start taking Tomaxacin? And what is that drug, exactly?
Rose Gates asked me when I would see Dr. Markus next. I said, “It’s not that I’m not pleased to see you, Nurse Practioner Gates, but I was actually scheduled to see Dr. Markus today.”
And so it is settled. This is what I have called her. This is what I will continue to call her. You all can go ahead and call your nurse practitioners whatever you like.
Did I tell you before about Nurse Nicole in the Chemo Barn who is a Canadian married to a USAF officer? They were stationed in Alabama for 3 years before moving here and when I first met her, she spoke with a Southern accent.
A heavy one.
“It’s so embarrassing,” she told me. That would probably be a rude thing for her to say, or rude, perhaps, that she’d find it embarrassing, or rude for me—though she both felt it and said it—for me to report. But there it is.
Maybe if it had been felt and said by an American and not a Canadian, I’d be slower to share it. Instead, I'm slow to blame a Canadian for feeling embarrassed about picking up an American southern accent. Eh?
Today, she is my nurse and I noted that she had lost her accent all together. She smiled broadly and told me that she’d just had a visit from her family for 3 weeks. The traces of Alabama have been flushed away!
“But you don’t sound Canadian, either,” I said. “You are now Every-woman!”
What else can I tell you?
I look around at the place I’d seen every Monday morning for 18 weeks in a row and it’s different: The patients are all new—no Kathy from my first day who was also here on my last; no British lady whose breast cancer turned up stage IV 12 years after her diagnosis; no young guy with his father who though Courtney the med tech was cute; no middle age businessman who worked on his laptop the whole time and fiddled with the cell phone clipped to his belt and hustled off at the end of treatment as though being here was just one more appointment to knock out in his day.
The whole crew is new. And the start of their sojourn reminds me that I’m so near the end of mine. You’d think I’d be all smiles about that, about the sheer prospect of moving on. But when I consider it, I start crying. Another layer of grief I didn’t see coming. A layer that will fade away as the others have, I’m sure.
I’m not here for chemo, of course. Just an early morning zap, and then a visit with Dr. Science, and then my Herceptin.
About the zap: Today was the last day for treatment to the larger area. I did 28 of these, consisting of 3 zaps each, resulting in a rectangle-shaped 2nd-3rd degree burn on my chest wall, with a few trailing burns over my shoulder. The other result, I say with great hope, is that any remaining cancer cells hovering near the tumor were burned crispy.
My last 5 treatments will be an electron treatment focused closely along my scar. “So far it’s been photons,” Dr. Tanner said.
I’m glad someone bothered to study physics.
They’ve rearranged the chemo barn since last I stopped by. They took apart those rows of 3 chairs and turned the whole room into pairs only, each chair tilted towards its partner. I’m not going to call it cozy, but it is much improved.
Other improvements: the pharmacist. He is a tall guy, 30-something, and he works in the room behind the nurses’ desk, preparing our various bags of drugs. Before, he had a hairy neck, scruffy face, and he wore sweatpants and t-shirts. After, he is clean-shaven—even the neck!—and he’s wearing a crisp set of scrubs.
Before and after what?
Before and after I commented to one of the nurses about “that guy” seeming a little creepy, and why didn’t he have to follow the same dress code as everyone else who works here?
It wasn’t a complaint. It was a comment. Delivered with a smile. I think.
Lest we give into the fallacy of the false cause, I should emphasize that the nurse didn’t say to me right then, “You’ve got a point: I’ll mention it to management.”
Am I going to follow up to learn what really happened? No.
Ah, I’m back now from my appointment with Dr. Science. Only, he was on call today at Penrose hospital, so I instead saw Rose Gates, the nurse practitioner. Remember her? When she walked in the door, I thought, “Doh! We never reached consensus on what to call her!”
I had some questions about future treatment that only my treating physician could answer, like when would I do a routine scan? And when would I start taking Tomaxacin? And what is that drug, exactly?
Rose Gates asked me when I would see Dr. Markus next. I said, “It’s not that I’m not pleased to see you, Nurse Practioner Gates, but I was actually scheduled to see Dr. Markus today.”
And so it is settled. This is what I have called her. This is what I will continue to call her. You all can go ahead and call your nurse practitioners whatever you like.
Did I tell you before about Nurse Nicole in the Chemo Barn who is a Canadian married to a USAF officer? They were stationed in Alabama for 3 years before moving here and when I first met her, she spoke with a Southern accent.
A heavy one.
“It’s so embarrassing,” she told me. That would probably be a rude thing for her to say, or rude, perhaps, that she’d find it embarrassing, or rude for me—though she both felt it and said it—for me to report. But there it is.
Maybe if it had been felt and said by an American and not a Canadian, I’d be slower to share it. Instead, I'm slow to blame a Canadian for feeling embarrassed about picking up an American southern accent. Eh?
Today, she is my nurse and I noted that she had lost her accent all together. She smiled broadly and told me that she’d just had a visit from her family for 3 weeks. The traces of Alabama have been flushed away!
“But you don’t sound Canadian, either,” I said. “You are now Every-woman!”
What else can I tell you?
I look around at the place I’d seen every Monday morning for 18 weeks in a row and it’s different: The patients are all new—no Kathy from my first day who was also here on my last; no British lady whose breast cancer turned up stage IV 12 years after her diagnosis; no young guy with his father who though Courtney the med tech was cute; no middle age businessman who worked on his laptop the whole time and fiddled with the cell phone clipped to his belt and hustled off at the end of treatment as though being here was just one more appointment to knock out in his day.
The whole crew is new. And the start of their sojourn reminds me that I’m so near the end of mine. You’d think I’d be all smiles about that, about the sheer prospect of moving on. But when I consider it, I start crying. Another layer of grief I didn’t see coming. A layer that will fade away as the others have, I’m sure.
Sunday, January 17, 2010
Haiti Update
Salvation Army has reached the orphanage, and they now have water and food to last a few more days. Praise God for this.
But there are several babies there who need special medication and other urgent attention, so their need is still very dire.
The amazing news is that all the official "boxes" have been checked to evacuate all of these orphans--recall that they had already been matched to adopting families in the US.
Only 2 boxes remain: The Secretary of State needs to approve this evacuation, and so does the President of Haiti.
I do not know what would go into Clinton's calculus for deciding, but on the Haiti end, we recall that this President is not a very good man, and that he doesn't care much about the welfare of his people and that part of the reason the adoption process takes so long is that his government milks thousands upon thousands of dollars out of the adopting families under the guise of 'paper work.'
Whether he will let these children--and the cash they represent--go without another cent spent is a matter for prayer.
Please pray that both leaders will sign off on this and that these children will join their "forever families" in just a few days.
But there are several babies there who need special medication and other urgent attention, so their need is still very dire.
The amazing news is that all the official "boxes" have been checked to evacuate all of these orphans--recall that they had already been matched to adopting families in the US.
Only 2 boxes remain: The Secretary of State needs to approve this evacuation, and so does the President of Haiti.
I do not know what would go into Clinton's calculus for deciding, but on the Haiti end, we recall that this President is not a very good man, and that he doesn't care much about the welfare of his people and that part of the reason the adoption process takes so long is that his government milks thousands upon thousands of dollars out of the adopting families under the guise of 'paper work.'
Whether he will let these children--and the cash they represent--go without another cent spent is a matter for prayer.
Please pray that both leaders will sign off on this and that these children will join their "forever families" in just a few days.
Saturday, January 16, 2010
Prayer Request
You all know of the devastation in Haiti. Bryan and I particularly attuned to the welfare of an orphanage there called For His Glory. It is home to about 120 children, many of whom are already part of a family in the US, but who are waiting there for the 2 - 3 years it takes for their paperwork to be processed.
We are friends with 4 different couples in our church who are pursuing adoptions from this orphanage. My heart aches for them as they are helpless to protect their children right now. Helpless, that is, if it were not for prayer and a Mighty God.
The following is a copied post from their web site:
URGENT CALL FOR PRAYER
We received word from Pierre this morning that the situation in the orphanage is becoming dire.
We would like to ask EVERYONE that receives this to use this information to get on your knees before our Lord and ask Him to provide.
We have one nanny that is deceased and the orphanage needs her body to be removed.
The orphanage has no drinkable water.
In addition they need:
formula for babies
medicines
IV fluids (one child is currently on an IV)
charcoal to cook
diesel
cash to buy supplies if they find them.
They are running out of cash and there are no banks open to get cash, so it needs to be delivered by someone already on the ground or by helicopter.
Others are beginning to rob them of what supplies they do have.
There are helicopters flying over the orphanage and they have made a sign on the roof that says they are an orphanage and need help.
The staff is also working to get together all the paperwork for each child that has an adoptive family in a way that it can be attached to their body if there is an opportunity to evacuate.
For His Glory is doing everything we can on this end to contact people who may be able to help. Please pray. Currently, that is the best thing you can do to help.
Trusting in Him,
For His Glory
We are friends with 4 different couples in our church who are pursuing adoptions from this orphanage. My heart aches for them as they are helpless to protect their children right now. Helpless, that is, if it were not for prayer and a Mighty God.
The following is a copied post from their web site:
URGENT CALL FOR PRAYER
We received word from Pierre this morning that the situation in the orphanage is becoming dire.
We would like to ask EVERYONE that receives this to use this information to get on your knees before our Lord and ask Him to provide.
We have one nanny that is deceased and the orphanage needs her body to be removed.
The orphanage has no drinkable water.
In addition they need:
formula for babies
medicines
IV fluids (one child is currently on an IV)
charcoal to cook
diesel
cash to buy supplies if they find them.
They are running out of cash and there are no banks open to get cash, so it needs to be delivered by someone already on the ground or by helicopter.
Others are beginning to rob them of what supplies they do have.
There are helicopters flying over the orphanage and they have made a sign on the roof that says they are an orphanage and need help.
The staff is also working to get together all the paperwork for each child that has an adoptive family in a way that it can be attached to their body if there is an opportunity to evacuate.
For His Glory is doing everything we can on this end to contact people who may be able to help. Please pray. Currently, that is the best thing you can do to help.
Trusting in Him,
For His Glory
Friday, January 15, 2010
Wellness Update
I'm wearing a pressure sleeve and a pressure glove, so typing is not all that easy.
Or, I could say that typing is easy, and making typo's, even moreso. All this makes me given to brevity.
My follow-up with the lymphedema therapist is on Monday, whence we'll see whether I'm responding to the pressure-sleeve-therapy. I also "manually drain" my lymphatic system. Who even knows anything about the lymphatic system let alone that one could "manually drain" it?
I have 7 radiations left to go, and my skin, this week, has finally screamed in protest. I'm glad I don't have a nerve connected to that chest wall, because it's now covered in a 2nd degree--bordering on 3rd degree--burn.
After the 3:30 treatment, it's pretty uncomfortable (from the bit that I can feel). But by morning, it's converted to mostly a tan. In all, I'm pretty thankful the skin has been responding so well. I'm thankful, too, for the lydocaine-aloe gel that I can apply liberally.
On the other hand, the rest of my body is pretty aware that a chunk of it is having the cancer burned out of it. And it's working really hard to restore the damage. I'm so exhausted. All the time. I'm sleeping about 10 hours a day, and still feel like I could take a nap at any given moment.
Ah, well. Only 7 more treatments.
Or, I could say that typing is easy, and making typo's, even moreso. All this makes me given to brevity.
My follow-up with the lymphedema therapist is on Monday, whence we'll see whether I'm responding to the pressure-sleeve-therapy. I also "manually drain" my lymphatic system. Who even knows anything about the lymphatic system let alone that one could "manually drain" it?
I have 7 radiations left to go, and my skin, this week, has finally screamed in protest. I'm glad I don't have a nerve connected to that chest wall, because it's now covered in a 2nd degree--bordering on 3rd degree--burn.
After the 3:30 treatment, it's pretty uncomfortable (from the bit that I can feel). But by morning, it's converted to mostly a tan. In all, I'm pretty thankful the skin has been responding so well. I'm thankful, too, for the lydocaine-aloe gel that I can apply liberally.
On the other hand, the rest of my body is pretty aware that a chunk of it is having the cancer burned out of it. And it's working really hard to restore the damage. I'm so exhausted. All the time. I'm sleeping about 10 hours a day, and still feel like I could take a nap at any given moment.
Ah, well. Only 7 more treatments.
Tuesday, January 12, 2010
Happy Birthday
To Sister #4!
Today's lymphedema appointment went very well. I was really pleased with the therapist's knowledge and experience. She says the chances are good that we can reverse this. More details to come. . . In the meantime, thank you for your prayers.
As for Bryan's fabulous shirt: One of his colleagues in Korea--whose call sign is "Rude Boy,"--had a shirt like this. To his great credit, Bryan couldn't resist having one made for himself.
Today's lymphedema appointment went very well. I was really pleased with the therapist's knowledge and experience. She says the chances are good that we can reverse this. More details to come. . . In the meantime, thank you for your prayers.
As for Bryan's fabulous shirt: One of his colleagues in Korea--whose call sign is "Rude Boy,"--had a shirt like this. To his great credit, Bryan couldn't resist having one made for himself.
Sunday, January 10, 2010
A Rhinestone Studded Evening
Bryan and I went to the JFCC-IMD inaugural awards dinner on Friday night. 2 months ago, this evening was to be the General's retirement party, and I told Bryan I wouldn't plan on it. I had no way of knowing what I'd be feeling like 5 weeks into radiation, right? And at 30 bucks a ticket, it wasn't the kind of thing I wanted to have to decline at the last minute.
1 month ago, it became both the General's retirement party, and the Christmas party for the command. Same price. I had the same answer.
2 weeks ago, it stopped being the General's retirement party, because he's no longer retiring. It continued to be the Christmas party and now it was also to be an awards dinner. And Bryan had been nominated for field grade Officer of the Year.
And I was feeling pretty good with the radiation.
So then:
The evening was a delight. They held it at a hall on the Air Force Academy campus and the meal was actually really delicious. The people seated at our table were very talkative, a few of them were very funny. I had a great time.
Bryan won the award. As he went to the front to receive it, I told James, who sat next to me, "Shout out for him to take his jacket off." And James did.
Everyone in the hall laughed. Then silence. Then I called out, "No, seriously, take it off!" and everyone laughed again. But it was a less confident laugh. A "What the heck are they talking about?" laugh.
What were we talking about?
1 month ago, it became both the General's retirement party, and the Christmas party for the command. Same price. I had the same answer.
2 weeks ago, it stopped being the General's retirement party, because he's no longer retiring. It continued to be the Christmas party and now it was also to be an awards dinner. And Bryan had been nominated for field grade Officer of the Year.
And I was feeling pretty good with the radiation.
So then:
The evening was a delight. They held it at a hall on the Air Force Academy campus and the meal was actually really delicious. The people seated at our table were very talkative, a few of them were very funny. I had a great time.
Bryan won the award. As he went to the front to receive it, I told James, who sat next to me, "Shout out for him to take his jacket off." And James did.
Everyone in the hall laughed. Then silence. Then I called out, "No, seriously, take it off!" and everyone laughed again. But it was a less confident laugh. A "What the heck are they talking about?" laugh.
What were we talking about?
Bryan's way-fab shirt, that's what. He had it tailored while in Korea. But he wouldn't take his jacket off up front. This is one way Bryan and I are different from each other.
He did remove it after returning to our table, and so James and I were vindicated for shouting out in the first place. If you ask me, Bryan may have won the award, but he missed his moment for fame.
But here was the highlight of my evening:
That Friday afternoon, I was talking with my friend, Mike, who mentioned that he'd seen a made-for-TV movie recently about the man who invented/developed Herceptin. This is the protein therapy, you may recall, that has single-drug-edly raised the survival rate of patients with this particular breast cancer from 23% to 83%.
We talked for a bit about medical research, and how humbled I am by it, especially by all the women who participated in the clinical trials that led to Herceptin becoming standard treatment. What a gift to me. From people I don't even know and can't even thank. Then our conversation moved along to the business at hand.
A few hours later, there I was, at the Air Force Academy, chatting with a couple during the
He did remove it after returning to our table, and so James and I were vindicated for shouting out in the first place. If you ask me, Bryan may have won the award, but he missed his moment for fame.
But here was the highlight of my evening:
That Friday afternoon, I was talking with my friend, Mike, who mentioned that he'd seen a made-for-TV movie recently about the man who invented/developed Herceptin. This is the protein therapy, you may recall, that has single-drug-edly raised the survival rate of patients with this particular breast cancer from 23% to 83%.
We talked for a bit about medical research, and how humbled I am by it, especially by all the women who participated in the clinical trials that led to Herceptin becoming standard treatment. What a gift to me. From people I don't even know and can't even thank. Then our conversation moved along to the business at hand.
A few hours later, there I was, at the Air Force Academy, chatting with a couple during the
mingle time. They were Filipino Americans, and I mention this because, to my knowledge, only a Filipino woman would think to wear the following piece of jewelry at a formal military awards dinner: A giant, pink rhinestone studded ribbon pendant on a multi-colored rhinestone chain.
I said to her, "I notice your pendant."
She said back to me, "I am a survivor!"
I said, "I am on my way to becoming one myself." And with that, she launched into her war story, which focused mostly on her reconstruction surgery.
Then her husband mentioned, "She was part of the Herceptin trial, and now it is standard treatment."
The tears welled up. I couldn't believe it. Just couldn't. I hugged her and said, "Thank you, thank you for being part of that trial, I've always wanted to be able to thank the women who helped me this way."
What a gift to have met her. And the timing of it! God just doesn't stop.
And, hey, let's also hear it for giant, rhinestone studded pink ribbon pendants.
I said to her, "I notice your pendant."
She said back to me, "I am a survivor!"
I said, "I am on my way to becoming one myself." And with that, she launched into her war story, which focused mostly on her reconstruction surgery.
Then her husband mentioned, "She was part of the Herceptin trial, and now it is standard treatment."
The tears welled up. I couldn't believe it. Just couldn't. I hugged her and said, "Thank you, thank you for being part of that trial, I've always wanted to be able to thank the women who helped me this way."
What a gift to have met her. And the timing of it! God just doesn't stop.
And, hey, let's also hear it for giant, rhinestone studded pink ribbon pendants.
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