My dad has been in the hospital since last Tuesday. He is really ill this time. I have participated via telephone in a couple of family meetings and it appears that when he is discharged, it will be to a rehab facility with skilled nursing care. It's not too likely that he will come home.
We're all taken aback, but perhaps I am less surprised than my mother or sister. After all, one of the things living with advanced cancer meant was that I faced my own mortality at the relatively young age of 42. I'm reminded of how important it is to make decisions for yourself and express your wishes with regard to health care decisions while you have the energy and strength to do so. How else can your partner and family know that they're doing what you would want?
February 28, 2008
February 22, 2008
We're cookin' now!
Earlier this week Rik and I bought a new range for the kitchen. The oven on the old one was failing. In recent weeks cakes came out underbaked in the center, as though they had been baked in a tube pan -- the center just fell out! Challah was still raw inside. So I did a little research and off we trouped to Almvigs. These are the people who sold us the dishwasher last summer, a local store with terrific customer service.
The sales help listened carefully to what we wanted and steered us to a GE Cafe gas range. I had been looking at another model, but this one has everything I wanted: 5 burners with the center doubling as a griddle; convection upper oven, full lower oven (not just a warming drawer) located on the bottom; controls in the front so you don't have to reach over a hot range to adjust the temperature, and nice overall design. The large oven is on top so you don't break your back lifting the Thanksgiving turkey up from the floor. We bought it.
Today Roy the installer put in the new hood over the range so we would have ventilation through the attic and to the outdoors. Matt ran a gas line from the basement up through the kitchen floor. Bill the delivery man shlepped in the range, and Roy finished the installation. It looks great, all the burners work well, and the oven is properly calibrated. All the workers were competent and thorough as well as pleasant people.
Rik looks forward to eating many delicious meals prepared on the new range. Let's see, what shall I make first? Perhaps biscotti....
February 15, 2008
Disability review
Every year or so, Social Security checks to make sure that I am still disabled. They send a multiple page form for me and my doctor to complete. Then they decide that yes, I still have metastatic breast cancer, and yes, I am still disabled. I have been through this process at least twice, maybe three times, in the last five years.
At 8:09 AM today, I received a call from the disability case worker. The government gets up earlier than I do! Barely coherent after a middle of the night bout with insomnia, I confirmed that I had recently had a PET/CT scan and that the results were available. So I guess that after Seattle Radiologists confirms my evidence of metastases, SSD will determine that I am still eligible for benefits.
I worked full-time for 19 years and also paid into the system for part-time work while in high school and college. I am thankful that this cushion is here for me. Alevai that it should still be available when Rik is eligible for regular Social Security benefits when he reaches age 621/2 in 2022!
At 8:09 AM today, I received a call from the disability case worker. The government gets up earlier than I do! Barely coherent after a middle of the night bout with insomnia, I confirmed that I had recently had a PET/CT scan and that the results were available. So I guess that after Seattle Radiologists confirms my evidence of metastases, SSD will determine that I am still eligible for benefits.
I worked full-time for 19 years and also paid into the system for part-time work while in high school and college. I am thankful that this cushion is here for me. Alevai that it should still be available when Rik is eligible for regular Social Security benefits when he reaches age 621/2 in 2022!
February 12, 2008
PET/CT results
Today I saw my oncologist for the first time in three months. After catching up with each other, he reviewed the somewhat mixed results of last week's PET/CT scan with me.
There was improvement in the lesions that were of most concern last time, namely in the sternum and on the spine at at T12. This is particularly good news because T12 is so close to the spinal cord. More good news is that there is no other site of metastatic disease.
However, there is increased activity in the iliac bone (in the pelvis) and in the sacrum (lower back). Since these are not weight bearing bones and don't have the potential to cause spinal problems, Dr. G decided not to change my treatment at this point. I will continue on tamoxifen daily and zometa monthly to strengthen my bones.
As he says, "the trade-off in the PET scan is good! The involved bones are neither weight-bearing nor dangerous. The improvement in the spine is welcome(d)."
I'll have another bone scan in April or May, after Passover.
There was improvement in the lesions that were of most concern last time, namely in the sternum and on the spine at at T12. This is particularly good news because T12 is so close to the spinal cord. More good news is that there is no other site of metastatic disease.
However, there is increased activity in the iliac bone (in the pelvis) and in the sacrum (lower back). Since these are not weight bearing bones and don't have the potential to cause spinal problems, Dr. G decided not to change my treatment at this point. I will continue on tamoxifen daily and zometa monthly to strengthen my bones.
As he says, "the trade-off in the PET scan is good! The involved bones are neither weight-bearing nor dangerous. The improvement in the spine is welcome(d)."
I'll have another bone scan in April or May, after Passover.
February 08, 2008
Breaking up is hard to do
A couple of years ago I made a new friend. We had a lot in common: cancer, love of dogs, interest in writing. My friend taught me how to garden. We took trips together. We shared personal and family milestones.
Recently I realized I hadn't heard from this friend in a while, and so I tried to get in touch by phone and email. I asked if I had said or done something of concern. Turns out I had, several months ago, and we never discussed it. So it came as something of a surprise when this friend told me a break was needed.
At two other times in my life, a close friend has told me that they needed a break. In one case I simply never heard from that friend again, and being young and not very mature, I never pursued it. In the other case, soon after our falling out I moved across the country. (These were the days before the internet.)
I know I'm not perfect. I think I'm pretty aware of my character flaws and traits. And most of my friends love me in spite of, or even because of who I am. I'm proud to say that I have close friendships with both men and women that have lasted for many years. These friendships have deepened as we have traveled up and down life's roller coaster together.
Still, I miss the friend who broke up with me. I hope that someday we will be able to pick up the pieces.
Recently I realized I hadn't heard from this friend in a while, and so I tried to get in touch by phone and email. I asked if I had said or done something of concern. Turns out I had, several months ago, and we never discussed it. So it came as something of a surprise when this friend told me a break was needed.
At two other times in my life, a close friend has told me that they needed a break. In one case I simply never heard from that friend again, and being young and not very mature, I never pursued it. In the other case, soon after our falling out I moved across the country. (These were the days before the internet.)
I know I'm not perfect. I think I'm pretty aware of my character flaws and traits. And most of my friends love me in spite of, or even because of who I am. I'm proud to say that I have close friendships with both men and women that have lasted for many years. These friendships have deepened as we have traveled up and down life's roller coaster together.
Still, I miss the friend who broke up with me. I hope that someday we will be able to pick up the pieces.
February 06, 2008
Scan update
Yesterday I had my (annual) PET/CT scan. I had to fast from midnight the night before. I checked in and was immediately given valium to insure that I didn't move while the glucose was spreading throughout my body. There's nothing like valium on a completely empty stomach! I was woozy within moments.
Then the tech tried to insert an IV. Twice. She tried to use the veins in my elbow and in my hand. Unfortunately, neither one took. And of course, since I was fasting AND had taken valium, my vasovagal reflex kicked in and I felt very faint. Thankfully a nurse was able to access my port. I developed a huge bruise on my hand which topically applied arnica cream has reduced nicely.
I drank a lovely barium concoction, was injected with the radioactive dye, rested quietly in my valium haze for 40 minutes, and drank another large container of barium. Then they brought me to the scan machine. It's shaped in a ring form. I laid down on the sliding gurney, put my arms overhead and clasped my fingers together, and slid through the doughnut hole. The actual scan seemed to take about half an hour, and the whole process was 3 hours from start to finish.
By this time I was really hungry, so Rik and I went to Glo's for his second and my first breakfast. I felt as though I deserved an indulgent meal, so I had Eggs Florentine (poached eggs atop spinach and an English muffin, covered with hollandaise sauce) served with terrific home fries and some decaf coffee. Rik had Smoked Salmon Benedict and lovingly shared his hollandaise sauce with me.
We were home by 2 PM where I sacked out on the couch in a valium- and carb-induced haze for the next few hours. Although I wasn't actually asleep the entire time, I felt as though I could barely move. I get the scan results from my oncologist next week.
February 04, 2008
PET/CT scan tomorrow
On Tuesday I have my annual PET/CT scan. Since my bony metastases have been mostly stable for more than five years, my oncologist usually orders bone scans. But once a year he orders the (more expensive) PET/CT scan. Thankfully our health insurance covers the costs of both kinds of tests. I usually have a bone scan once every 3-4 months.
The two tests give different information. According to www.webmd.com, a bone scan "is a nuclear scanning test that identifies new areas of bone growth or breakdown". As I understand it, bone scans don't differentiate between healing fractures and metastases. The PET/CT scan gives information about how rapidly cells "take up" glucose. Since cancer cells grow quickly, they will have a faster uptake.
Either way my body gets a lot of radioactive material during the course of a year. But I don't think I glow in the dark....
The two tests give different information. According to www.webmd.com, a bone scan "is a nuclear scanning test that identifies new areas of bone growth or breakdown". As I understand it, bone scans don't differentiate between healing fractures and metastases. The PET/CT scan gives information about how rapidly cells "take up" glucose. Since cancer cells grow quickly, they will have a faster uptake.
Either way my body gets a lot of radioactive material during the course of a year. But I don't think I glow in the dark....
Lymphedema under control
My second lymphedema flare-up in two months is back under control through bandaging. Although I hate wrapping (it feels like my entire arm is encased in a huge, tight oven mitt), it really works. Bandaging for a couple of days, self-massage, and drinking some homemade oxymel seemed to do the trick.
An on-line friend who also has lymphedema told me about oxymel. It's a medieval recipe for "what ails you." Combine 4 ounces of honey with hot water and vinegar in equal parts. Add 1 ounce fresh rosemary. Steep in a coffee maker for several hours. Drink daily diluted with water or seltzer.
It works!
An on-line friend who also has lymphedema told me about oxymel. It's a medieval recipe for "what ails you." Combine 4 ounces of honey with hot water and vinegar in equal parts. Add 1 ounce fresh rosemary. Steep in a coffee maker for several hours. Drink daily diluted with water or seltzer.
It works!
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