November 21st, 2013 §
“Why do you have to have surgery tomorrow?” seven year-old Tristan asks from the back seat after we drop off his 11 and 15 year old siblings this morning.
“Because I need to have something put in my body called a port. It’s a little container made of something cool called titanium that lets the doctors put some of my medicines into my body in an easier way.”
“Can you see it?”
“Yes, you will be able to see that there is a lump under my skin, about the size of a quarter. But you will only see the lump. You won’t see the actual thing because that will be inside my body. You know how I have the scar on the front of my neck? It will be like that, here, off to the side, same size scar but with a bump under it.”
“Is it like the bubble I had on my neck when I was a baby?”
“Well, that was a skin tag, so that was a lot smaller. And they were taking that away. This is something they are putting in to help make it easier to get some of my medicines. And you know when you go with me and I have blood taken from my hand? Well now sometimes they will be able to just take it from there instead. So it helps with a few jobs.”
“Will you have it forever or do they take it out when your cancer goes away?”
(Driving the car, trying to keep tears in check, knowing this is a vitally important conversation. I’ve explained this to him before but I know it’s hard for him to understand.)
“Well, honey, remember I had cancer when you were a baby? Well, this time the cancer is different. A lot of the time you can have cancer and the medicines and surgeries make it go away and it stays away for a long, long time. Maybe even forever. Sometimes any cancer cells that might be left go to sleep and just stay that way. Sometimes you have bad luck and they wake up. Mine woke up after six years. And now the cancer cells are in places that I won’t be able to get rid of them all for good. I am always going to have cancer. This time my cancer is the kind that is always going to be here.”
“You’ll always need medicine. And the thing they are putting in?”
“Yes, honey, I will always need medicine for my cancer. And I will probably need to have the port in forever too.”
“I am glad you are asking me questions about it. I want you to always ask me anything. I will try to explain everything to you. I know it’s complicated. It’s complicated even for grownups to understand.”
“Mom, did you know people whose eyes can’t see use the ridges on the sides of coins to tell which one they are holding? So if you have a big coin with ridges that person would know it is a quarter?”
“That makes sense. How did you learn that?”
“At school. And so if it’s smooth you know it’s a nickel or penny. It’s important that they know what coin it is.”
“I think you’re right. That is very clever.”
( I stay quiet waiting to see where he will take the conversation next.)
“Remember when my ear tube fell out and was trapped in my ear and the doctor pulled it out and I got to see it? It was smaller than I thought it would be.”
“Yes, I thought the same thing.”
“I really wanted to see it. I wanted to see what it looked like.”
“Can you show me a picture of it?”
“The thing for tomorrow.”
“Yes. Or don’t you know what it will look like?”
“I know what it will look like. Sure, I will show you on the computer after school.”
“It’s time for school but I am glad we talked about this. I want you to keep asking questions when you don’t understand something. I love you, Tristan. I hope you know how much. I know this is hard for all of us. I wish it were different. But we are going to keep helping each other. And talking about all of this is good. We can do that whenever you want.”
October 10th, 2013 §
I am waiting for test and scan results, laying low after a busy and stressful week. Wednesday was a marathon of bloodwork, EKG, CT scans, and bone scan, followed today by more bloodwork. Friday is another oncology appointment. And I still made it to the dentist on Thursday for a cleaning!
I promise to report back once I know more about where things stand.
For now I would like to share two links: the first is a wonderful fundraiser that author Erika Robuck has organized to raise money for a metastatic breast cancer research fund at Sloan Kettering that I’ve established. Dozens and dozens of authors donated signed copies of their books and you can bid on a box of books (grouped by genre, you know exactly what you are getting)
The auction (only eligible to US residents, sorry) will end on Saturday night at 10 PM EST and you can find out more on the Facebook page. If you can’t bid on a box because the prices are too steep you can still donate in any amount to the fund here: http://mskcc.convio.net/site/TR?fr_id=1590&pg=fund&pxfid=27471
I have also announced that I will match the donation that the highest individual book box brings. This allows you to double the impact of your donation!
The second announcement is that I will be appearing on live TV on Friday night on Al Jazeera America’s show The Stream from 7:30-8:00 PM EST discussing pinkwashing and breast cancer awareness. Other guests will be Dr. Susan Love and Dr. Gayle Sulik.
You can join in via Twitter (@AJAMStream or #ajamstream), Google Hangout and other platforms.
Thanks for the support during a hard week.
September 10th, 2013 § Comments Off
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June 19th, 2013 §
Hi all, I’ve been sick with a nasty virus for the last five days, using my energy for some special end of year events with the kids.
I should be back on track soon, but everything just takes longer for me to recover from now.
I’ll hopefully have an update in the next few days.
I appreciate all of the help that friends have been giving during the busy end-of-school time.
April 20th, 2012 §
The other night, in 140 character tweets, I made some comments about my past few days on vacation in Jamaica. I noticed that two tweets especially received lots of replies and lots of “favorited” status.
Two simple sentences that captured so much of what I’ve been thinking about this week.
The tweets read:
Folks, these were the days I fought for during chemo. This time is my reward. These days with my family are priceless.
It doesn’t mean I don’t complain, or have bad days, or get frustrated with my kids. Life isn’t perfect. But I try to appreciate all I can.
the simple geometry of a beach umbrella
open door policy
I took many photos this week which you can see now on Instagram (my username there is AdamsLisa). I’ll be posting my favorites here occasionally in the weeks ahead, and probably next winter when we all are craving some views of sunshine and palm trees.
I am grateful to Clarke for working hard each day to pay for the trip, to my children for being the individuals they are who make me smile, laugh, and go to the computer to Google answers to endless questions. I always appreciate their hugs and kisses and sense of wonder and enthusiasm for life. I know these days with them are fleeting.
Life is fragile. I know it.
I am treasuring these last hours here in Paradise.
August 26th, 2011 §
Uncertainty is my enemy. Preparedness is my talisman.
The nervous anticipation I have for unwelcome events is astounding. I sit, waiting for Hurricane Irene, asking myself repeatedly if I’ve done everything I can to minimize damage and inconvenience.
The unease is the same feeling I had waiting for chemo to start; knowing something is coming but not knowing precisely what to expect worries me. If I were told exactly what the hardship would be and its duration it would be easier. Blind movement forward can be a challenge.
My family will be together and I am sure we will stay safe.
I’ve done all I can. The eye is projected to pass within 5 miles of our house.
Hope you all stay safe and dry and out of harm’s way wherever you are.
February 5th, 2011 §
I’m not a t-shirt kind of girl. If you know me in real life you know I don’t wear shirts with graphics on them. I don’t even wear prints often. A t-shirt with a slogan on it? Well, that’s just not me.
There is ONE slogan that I have seen — and a cancer one at that — that would get through my sartorial roadblocks.
I’ve seen this as a t-shirt phrase, and it’s my favorite one yet:
Of course they’re fake; the real ones tried to kill me!
I wouldn’t design it like this one with the pink ribbon and goofy letters.
It would just be plain, all lowercase, very subdued. Not whimsical or cutesy.
I just may design a custom one… if I do, I’ll share it with you.
December 23rd, 2010 §
So many people on Twitter asked about these pecans… here is the story:
My friend Inga gave me a bag of these a few nights ago. I devoured them.
I have since made my own batch and I just can’t stop eating them. They are delicious, very easy to make, and delectable. They make a great gift too — in a Mason jar or cello bag.
You will need:
1 pound halved pecans
1 cup sugar
1.5 tsp cinnamon
1 tsp salt (if the pecans are salted I would omit additional salt)
1 Tbsp water
1 egg white
Preheat oven to 250 degrees
In a large Ziploc bag combine sugar, cinnamon, and salt. Mix. Set aside.
In a small bowl, combine egg white and water. Mix.
Add water/egg mixture to the dry ingredients in the Ziploc bag. Add pecans. Close the bag and mix all around until the pecans are evenly coated (you want the moisture evenly distributed, the sugar may clump a bit on some pecans more than others).
Once the pecans are coated, spread evenly onto a cookie sheet.
Bake in oven for one hour.
When you remove from the oven, let the mixture cool on the sheet; the mixture still may be a bit wet and this will allow it to firm up. Use spatula to scrape them off the cookie sheet, they will some off in small clumps. (the cookie sheet is easily cleaned by soaking in hot water for a few minutes).
Your end result will look like this:
December 21st, 2010 §
1. The phone will ring while I am in the bathroom.
2. I will never be able to get my clothing just right so that I am neither too hot nor too cold for longer than 10 minutes.
3. The line I am standing on will move slower than any other line.
4. My husband will leave the lights on every single time he goes into the garage.
5. I will find one more item of dirty clothing the moment the “add garment” light goes off on the washing machine.
6. I will spend my entire vacation worrying about whether I will make the connecting flight for the return trip home.
7. One of my children will add one more item to his/her Christmas list immediately after I declare I am DONE shopping for the year.
8. I will never be able to read all of the books I want to read.
9. The only sizes left in the pants I will fall in love with will be sizes 00 and 20.
10. Carbohydrates are the key to happiness in life.
What is your list?
August 27th, 2010 §
My mother and I discuss psychology often. We’ve had a few conversations lately about the shows Hoarders and Obsessed (both appear on A&E, a second show Hoarders: Buried Alive airs on TLC). I used to like and watch both, but lately Hoarders has started to bore me. It seems like such a script in terms of the show; it’s like a Mad Libs where the only variables are name, sex, and age of the hoarder. The rest of the situations seems strikingly familiar each time.
The thing that frustrates us with the show Hoarders is that there’s no real therapy. There’s no discussion of treatment, no display of a change of thinking for the hoarder. Instead, over the course of 4-5 days (often it’s only 2 days) the hoarder is expected to suddenly “be ready to change” and start throwing things away with some prompting from a therapist and team of cleaners.
Why the therapists or family members seem surprised when initial enthusiasm wanes and the hoarders are reticent to part with their cherished belongings (often, literally, trash) is beyond me. Hoarding is a manifestation of a mental illness, and needs to be treated with counseling over a period of time. Like that of an addict, the pattern of behavior will not shift overnight, without education and a true desire to change.
Obsessed, on the other hand, shows the power of both a good therapist and a patient who is really ready to change. The process that they use takes about three months. With slow immersion into situations that are anxiety-provoking to the person with OCD, therapists use increasingly challenging situations to “untrain” the person. It may mean having an agoraphobic drive for a distance beyond his/her comfort zone or preventing a person with washing compulsions to wash his hands after doing a task that gets him dirty. Slowly building up to more traumatic and anxiety-provoking situations allows the patient to feel a sense of accomplishment and pride at making progress toward undoing these compulsions. At the end, the patient performs the task that they stated was their “dream goal” to achieve. This goal might be getting on an airplane to visit a relative or risking a dirty, germy home by inviting guests over for a party.
For me, a key takeaway from the show is that the body cannot stay in a period of highest anxiety for a long period of time. Even during all-out panic attacks that patients may have, if they can ride it out, focus on breathing and realize that they are okay, eventually their anxiety level will diminish. It may take minutes or hours, but eventually patients report that their self-rated anxiety levels revert to tolerable amounts. Individuals will see that they confronted their fear and remained safe. Therapists use cognitive behavioral therapy as their guide to teach patients that their particular fears are unfounded (if you don’t flip the light switch a certain number of times, no harm actually does come to your loved one, for example).
My point with this discussion is to say that not all OCD reality shows are the same. It’s unrealistic to expect a condition that’s been in place for years, perhaps decades, to be undone in a few days while cameras are watching. There’s a reason so many people relapse after going to rehab — it’s hard work. To me, showing the arc of recovery with cognitive behavioral therapy is a more realistic and appealing process, and ultimately a more beneficial one to the patient.