I got ahead of myself again.... "Off to Sibley, I go."
Thursday night I noticed some discomfort. By four in the morning, I was on the phone with the (one of my many) on call physician. He was debating between a trip to the ER and an early am appointment. I begged for the am appointment and promised to be vigilant and call back if my symptoms worsened.
By 8:30 Friday morning, I was at Georgetown, hoping not to be admitted for a weekend of IV antibiotics. Of course, at the time, I was pretty stressed. I didn't know if this would affect the radiation start date and a weekend at Georgetown was not in the plans. (Zaira was off for the weekend, the Kowats were in town and my folks were out of town). I spent the morning zigzagging Georgetown, between buildings and doctors. Four hours, three doctors appointments, two antibiotics later, we headed home. Like I said before, great people, funky facility. No need for a second admission in two months.
After the excitement, we had a great weekend with Jim's parents. Sweets, treats, love and laughs filled the weekend.
"Here we go" was how one of my Georgetown radiation therapist started each treatment. You change into a gown and go into the room. They line you up. You chat about the weather, your day. They adjust you a bit here, a bit there. Then "here we go" and they leave the room. Treatment begins.
Tuesday, Washington had its biggest snowfall of the season and everything was shut down. (As a local, I think appropriately.). Jim and I trekked out for a 10:00 at Georgetown. We came home for lunch and had time for a snowball fight and sledding with Miles. Then, back out for my first radiation session at Sibley.
This treatment is not for the faint-hearted. Head pressed into a mask and locked into the table. It's like a Jason hockey mask. Or the one from Silence of the Lambs. Into loud machine for twenty or thirty minutes. Today, I asked what the emergency evacuation plan was. As in, in the event of a fire or emergency and I'm locked into the table, who saves me or how do I get out. The first response 'we don't leave without you' was not fully reassuring. The second, 'here is how you can get yourself out in the event of an emergency' was better.
Anyway, I've convinced myself that the machine sounds like one of the boys' electric trains racing around the track. That helps reduce my tension. And two days in, it isn't terrible. Hair and energy, TBD.
Here we go.
Wednesday, February 18, 2015
Tuesday, February 10, 2015
Change of Scenery
Over the past year, I've had a terrible time grappling with the fact that people still die of breast cancer. It just blows my mind. How could this still be taking lives? It's too long of a battle. Where is the equivalent of the discovery of penicillin? But, at least for triple negative breast cancer, we don't have one and it is no joke aggressive.
The plan is four weeks of radiation and we hope and pray that this is an isolated incident. And as we walk this path, I need all the karma, positive thoughts, universe-provides, prayers and prayer circles we can muster. Let this be it.
I've opted for a new radiation oncologist at Sibley. Going from Georgetown to Sibley is sort of like going from the nasty basement of a school in the city to the modern new construction of a school in the exurbs. The space is beautiful. And private. And quiet. With natural sunlight. LEED certified. No dead mouse in trap in the waiting room. Don't think that made the blog, but had to report that to the receptionist during my last round of radiation.
But before we chose lattes over lead paint, we conferred with my current (former) radiation oncologist. He liked the new plan better than his. So, we all agreed and off to Sibley I go. I am nearly ecstatic about the change. I am just over Georgetown. I mean, the people there are wonderful, really wonderful, but between chemo in closets and partially partitioned spaces, radiation in the basement and the ICU, I'm ready for a new venue.
Back to the plan, the primary effects will be fatigue, comparable to last time, which wasn't too bad. And hair loss. Which, as you may recall, was way worse than too bad. For whatever reason, I am resigned and not too worried about going through it again. I've been assured the hair loss won't be painful and I get to keep my eyebrows. See, I wasn't too greedy. (I should have asked for more!!). So, it will suck, but, eh, it all sucks.
For the treatments, I have to wear a scary, insane-asylum-patient-from-the-early-1900s mask. I had that made today and it wasn't too awful. Actually the most comparable experience was the plaster cast masks we made for self-portraits in art class in high school. Minus the excitement. But the team was really strong and efficient. It just felt organized. Which I like. So, that's the plan.
Back home, the boys are good. (For real). My head is my own again (For realer everyday). Days are getting longer. Almost through February, shortest and longest month of the year.
The plan is four weeks of radiation and we hope and pray that this is an isolated incident. And as we walk this path, I need all the karma, positive thoughts, universe-provides, prayers and prayer circles we can muster. Let this be it.
I've opted for a new radiation oncologist at Sibley. Going from Georgetown to Sibley is sort of like going from the nasty basement of a school in the city to the modern new construction of a school in the exurbs. The space is beautiful. And private. And quiet. With natural sunlight. LEED certified. No dead mouse in trap in the waiting room. Don't think that made the blog, but had to report that to the receptionist during my last round of radiation.
But before we chose lattes over lead paint, we conferred with my current (former) radiation oncologist. He liked the new plan better than his. So, we all agreed and off to Sibley I go. I am nearly ecstatic about the change. I am just over Georgetown. I mean, the people there are wonderful, really wonderful, but between chemo in closets and partially partitioned spaces, radiation in the basement and the ICU, I'm ready for a new venue.
Back to the plan, the primary effects will be fatigue, comparable to last time, which wasn't too bad. And hair loss. Which, as you may recall, was way worse than too bad. For whatever reason, I am resigned and not too worried about going through it again. I've been assured the hair loss won't be painful and I get to keep my eyebrows. See, I wasn't too greedy. (I should have asked for more!!). So, it will suck, but, eh, it all sucks.
For the treatments, I have to wear a scary, insane-asylum-patient-from-the-early-1900s mask. I had that made today and it wasn't too awful. Actually the most comparable experience was the plaster cast masks we made for self-portraits in art class in high school. Minus the excitement. But the team was really strong and efficient. It just felt organized. Which I like. So, that's the plan.
Back home, the boys are good. (For real). My head is my own again (For realer everyday). Days are getting longer. Almost through February, shortest and longest month of the year.
Wednesday, February 4, 2015
A sassy lot
Yes, that's you! Seriously, I knew folks would be looking for an update. That is why I wrote a post last night. I shared what I was comfortable sharing.
I do not know what our plan is. I am meeting with another radiation oncologist this week. I do not know what she will say. I do not know who will treat me. As my current radiation oncologist said, reasonable physicians can disagree on this stuff. I do not know what the plan is.
The tension (for me) is always between my need to express myself -I literally push these words out and then my load is easier to bear - and my need to protect my family's privacy. Jim had a rough day. That wasn't the day for me to blather on about how I feel.
I appreciate and love my strong (today, frustrated) community of support. Hold tight, friends. In the meantime, I'm gathering information about how to proceed, but not sharing rough drafts.
I do not know what our plan is. I am meeting with another radiation oncologist this week. I do not know what she will say. I do not know who will treat me. As my current radiation oncologist said, reasonable physicians can disagree on this stuff. I do not know what the plan is.
The tension (for me) is always between my need to express myself -I literally push these words out and then my load is easier to bear - and my need to protect my family's privacy. Jim had a rough day. That wasn't the day for me to blather on about how I feel.
I appreciate and love my strong (today, frustrated) community of support. Hold tight, friends. In the meantime, I'm gathering information about how to proceed, but not sharing rough drafts.
Tuesday, February 3, 2015
Get through day. Repeat.
It's Tuesday night and I don't really have much to say.
It was a tough day. For better or worse, I did not really learn anything new. My radiation oncologist had visited me in the hospital before the surgery. I don't have great recall of the conversation, but I had the highlights. Jim wasn't there when he came by. I had summarized for him, but this was the first real peek around the corner. Jim says it was the hardest conversation yet. For me, last December's two weeks of hell was much worse. But then it's sortof all shit, so who cares which was worse.
We left the appointment with a lot of information and a solid understanding of the recommendations and rationale. So a good meeting. Jim generously provided comic relief by ripping an enormous and indecent hole in his pants as we got into the car. We stopped for breakfast in a sunny spot and talked and cried and lingered. Then we bought new pants for Jim.
Jim went to work. I hunkered down at home with Ian and Zaira. And then Miles too. A friend brought a delicious meal (seriously the food deliveries are amazing. As I believe I mentioned last winter withthe infamous caterwauling post, even on my best days, I am only decorative in the kitchen.). Watched the Caps beat up the Kings and we are to bed.
I thought the day was better than expected. Jim, he thought it was just about the worst. One foot in front of the other. Repeat.
It was a tough day. For better or worse, I did not really learn anything new. My radiation oncologist had visited me in the hospital before the surgery. I don't have great recall of the conversation, but I had the highlights. Jim wasn't there when he came by. I had summarized for him, but this was the first real peek around the corner. Jim says it was the hardest conversation yet. For me, last December's two weeks of hell was much worse. But then it's sortof all shit, so who cares which was worse.
We left the appointment with a lot of information and a solid understanding of the recommendations and rationale. So a good meeting. Jim generously provided comic relief by ripping an enormous and indecent hole in his pants as we got into the car. We stopped for breakfast in a sunny spot and talked and cried and lingered. Then we bought new pants for Jim.
Jim went to work. I hunkered down at home with Ian and Zaira. And then Miles too. A friend brought a delicious meal (seriously the food deliveries are amazing. As I believe I mentioned last winter withthe infamous caterwauling post, even on my best days, I am only decorative in the kitchen.). Watched the Caps beat up the Kings and we are to bed.
I thought the day was better than expected. Jim, he thought it was just about the worst. One foot in front of the other. Repeat.
Sunday, February 1, 2015
Humble and positive
I know, I know. It's too bad I was so confident about having my head back, thinking I'm writing about cognitive function and my week and then publishing this meandering, typo-filled piece with my recollections from the hospital and the impressions of the medical staff. Perhaps, I was overly confident.
Two observations here. First, positive thinking. I believe in it, so maybe my optimism makes it so. I noticed in several posts since I got home, I said the family is good. Each next time I said it, it probably meant I was wrong before. But, eventually, we got there and perhaps all my 'boys are good' helped us actually arrive at my boys are good. Miles is happy. Ian is happy. Jim is happy. So, my thinking is, maybe soon, my head will be my own again.
Second, even more optimistically, I wrote that post after a fantastic night out (but in) with some ladies from Mt P. It was so lovely, I think I can reasonably blame the champagne and call that a boozey blog.
Lets talk about thank yous for a minute. I know I'm tardy. I started writing them in December, but didn't get very far. Writing thank yous is so important to me. I want to write them and I want to write good ones. But I just do not know that I will get them done. I've written 14 thank yous. To give you a sense of the magnitude of your generosity, and not counting flowers and fruit and food deliveries (and there have been many), I've probably received thirty cards in the past two weeks. Which is amazing and fortifying and I am so grateful. So you know, I have and will keep every card, note and scrap of paper in support you send me because I love them. And also I want my boys to have them -like my hair- if they ever need them to know me or know how strong and rich our lives were during this difficult hour. All to say, I am far behind and I am not sure I will catch up and thank you.
A note about Ian. He has made it to 18 months (I think the period between 12 and 18 months is the hardest - not baby, not kid, in everything but no attention span, but anyway, we are through it). He is so fun. He plays now. He pretends. He is so different from Miles, who had dozens of words and used
them all. (And still does. We went to the Caps game today and he said, "Chimera really hustled." Ridiculous parent pride.). Ian has dozens of words and basically says happy birthday and aqua and apple and brother. I mean, happy birthday. Few words, big charm.
Next week it's the first week of February. My dread is growing. I know I just need to get in there and start to work it out. But all the sudden, I kindof want to hide under the bed. Shit week ahead. Oh right, positive thinking. Maybe not.
Two observations here. First, positive thinking. I believe in it, so maybe my optimism makes it so. I noticed in several posts since I got home, I said the family is good. Each next time I said it, it probably meant I was wrong before. But, eventually, we got there and perhaps all my 'boys are good' helped us actually arrive at my boys are good. Miles is happy. Ian is happy. Jim is happy. So, my thinking is, maybe soon, my head will be my own again.
Second, even more optimistically, I wrote that post after a fantastic night out (but in) with some ladies from Mt P. It was so lovely, I think I can reasonably blame the champagne and call that a boozey blog.
Lets talk about thank yous for a minute. I know I'm tardy. I started writing them in December, but didn't get very far. Writing thank yous is so important to me. I want to write them and I want to write good ones. But I just do not know that I will get them done. I've written 14 thank yous. To give you a sense of the magnitude of your generosity, and not counting flowers and fruit and food deliveries (and there have been many), I've probably received thirty cards in the past two weeks. Which is amazing and fortifying and I am so grateful. So you know, I have and will keep every card, note and scrap of paper in support you send me because I love them. And also I want my boys to have them -like my hair- if they ever need them to know me or know how strong and rich our lives were during this difficult hour. All to say, I am far behind and I am not sure I will catch up and thank you.
A note about Ian. He has made it to 18 months (I think the period between 12 and 18 months is the hardest - not baby, not kid, in everything but no attention span, but anyway, we are through it). He is so fun. He plays now. He pretends. He is so different from Miles, who had dozens of words and used
them all. (And still does. We went to the Caps game today and he said, "Chimera really hustled." Ridiculous parent pride.). Ian has dozens of words and basically says happy birthday and aqua and apple and brother. I mean, happy birthday. Few words, big charm.
Next week it's the first week of February. My dread is growing. I know I just need to get in there and start to work it out. But all the sudden, I kindof want to hide under the bed. Shit week ahead. Oh right, positive thinking. Maybe not.
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