Tumor markers down

I saw Dr G last week and after repeat scanning of my liver and brain, it appears that my mets are stable and my tumor markers have dropped another 50 points.

The potential infection in my port line may or may not exist. Last week I saw an infectious disease specialist who is not convinced that I have an infection. He wants me to stop using my port for blood draws a few days before using it for chemo, to give anything that might be brewing a chance to heal. So I will go early to chemo, have my blood drawn for labs, and spend an extra hour in Ballard waiting for results, instead of having a phlebotomist stick me in the arm, and then run out of usable veins in a matter of weeks. That's why I got a port in the first place. Lymphedema in one arm means no needle sticks; crappy small veins in the other arm means I prefer to use the port. And no one wants to have to stick me in the feet or in the neck, the best other options. Uggh….

Back for more chemo tomorrow!

Lots going on

We have been very busy lately!

Last week we visited Rik's parents and enjoyed some Florida sunshine at the same time. Although the temperature was in the 80s, thankfully my lymphedema arm did not swell from either the long flights or the heat.

On Sunday we re-stocked our fridge at Costco and ended up leasing a new 2013 Nissan Leaf. It was a very busy day…

On Monday I had the second cataract surgery. All went well, and I didn't ask for more Versed, so I remember many details of the surgery. Remembering doesn't seem to bother me. We went out for breakfast at Skillet Diner, which continues to not quite live up to expectations, although breakfast was better than any other meal I've eaten there. The biscuit I ordered with my eggs was enormous and fluffy.

Tuesday was a lay-low day since I was "resting" for a PET/CT scan. No exercise and I was supposed to eat a high fat, low carbohydrate diet starting 24 hours before the scan. The scan was the next day at 11 AM, so I could eat a regular breakfast. I ate some leftover chicken for lunch. After my post-op check with the opthalmologist surgeon, we went to the grocery store and bought lamb chops for dinner, with which I sautéed some greens.

What I always seem to forget about this diet is that not eating carbohydrates (no bread, potatoes, etc.) leaves me feeling hungry. I ate some peanut butter at 11 PM and then fasted until the exam was over today at 2 PM. Believe me, eating breakfast after fasting for 15 hours was delicious no matter where you go!

I get the PET/CT results next week from Dr G. He's told me not to start another round of  Xeloda until after I see him and we speak about next steps in treatment.

Feeling pretty good

I'm ending week four of six on Femara as part of this clinical trial and have felt pretty good throughout. I have enough energy to get through a regular day consisting of walking the dog; at least one trip outside the house, sometimes two; preparing dinner;  heading out again some nights for an evening meeting or choir rehearsal.

Over Seattle's recent couple of sunny days, I've also been able to pull weeds in the garden for an hour or so at a time. This has an effect of increasing my lymphedema, but I've been able to keep it under some control with tight bandaging at night.

The neuropathy in my feet continues to bother me although it too is somewhat improved. My toes and the ball of my left foot are still numb and painful. Walking and standing are uncomfortable but as they're also necessary parts of life, I walk and stand as needed and sit when I can.

My hair has grown enough that I actually need a second haircut. My hair was trimmed nine weeks ago for the first time as it grew in post-chemo. It didn't grow back curly, but wavy enough (my usual) to need a whacking back. No bangs yet -- my hair in front is still very short. But this is much better than being bald!

All in all, I am enjoying a very reasonable quality of life on this clinical trial. In two weeks I will have the third round of scans, tumor markers taken, a brain scan (required follow up after last year's brain metastases treatment with gamma knife radiotherapy), and visits with both Dr G and Dr Gadi. Let's hope that all results indicate that the trial is a success and I should continue on this protocol.

Throwing the frogs (part of the ten plagues at our seder)

Chemo Monday

Today's chemo went smoothly from start to end. My lab orders were awaiting me at the desk; the nurses were on top of everything. On;y one problem -- there was a nurses' meeting at 8 AM and so the one poor woman at the lab, accessing ports, was overwhelmed from the get-go. Then the lab took more than two hours to get all my results up to the infusion center. All in all, we were there about four and a half hours. At least I had good company. A friend from my dancing days in Radost had been in contact and came for a visit on her one day off. We talked nonstop and passed the time beautifully. So despite the long day, I wasn't frustrated.

After another stupendous lunch at Cafe Presse (me: zucchini curry soup garnished with fresh dill and green olive tapenade followed by chocolat chaud with freshly whipped cream; Rik: one egg sunny side up and spinach salad with frites; both of us sharing a baguette), we came home to a little sunshine. I sat outdoors with a blanket over my legs and caught up on Sunday's newspaper and a good book, then went indoors to take a late afternoon nap.

We were both so full from lunch that we could nosh only a little dinner at 8 PM. Now I plan to relax for the rest of the evening.

Quick update on side effects: My eyelashes are mostly still hanging in there, but some have vanished and I don't know how long the rest will last. And I haven't written about lymphedema in a long time. Big Blue, my nighttime arm wrap, continues to do the trick and keep my lymphedema under control.

Lymphedema update

I realized that i haven't blogged about lymphedema recently. I am pleased to report that it has hardly bothered me at all since getting the big blue Jovi Pak arm sleeve. My last post on lymphedema issues appears to have been in October 2010.

I wear the sleeve every night, adding extra foam pieces to break up edema as needed or to improve the sleeve's fit. Because this sleeve was made to measure, and I bought it when I was in the middle of a flare up, it is just a tad larger than I need now that my arm is stable, particularly in the hand.

I wash it weekly, and so on Sunday nights it fits beautifully, having shrunk the tiniest bit in the dryer. In the next day or so I begin to add extra padding on the back of my hand. By the end of the week I am wrapping some bandaging around the hand, wrist and forearm to provide extra compression, and then I wash it again and start the whole process over.

It was very easy to put on at the airport for our recent flight to Toronto. That meant I could go through security with a naked arm; give myself the injected lovenox an hour before flying; and put on the gizmo and wrap my arm at the end of all these precautions. When flying, I wore it with a glove to provide enough compression in my hand. That was a little too tight, but it did prevent me from having any issues when we landed.

All in all it's been a good purchase, and I am delighted to have full use of my arm during the day when I'm active, in exchange for compression at night when I am sleeping.

Now if only I could get some better sleep. But that's a story for another day.

Another article

A few months ago I was interviewed for an article on lingering effects on life after (or in my case, with) cancer for Health To You magazine (h2u). h2u is a membership organization providing "benefits and resources that support your health and well-being." The article came out recently and I received a copy of the magazine from the author.


The article is called "A lifelong journey: How cancer survivors pick up the pieces." Although I was not featured on the cover, the table of contents on page two shows a picture of Bobka and I (he's nosing my face) as the draw for the article on page six. There is also a cute photo of me with both dogs at my section of the article. In this one, Pumpkin is licking my face.


The article itself features four people: a man with advanced melanoma that has spread into his bones and liver; a woman with advanced, squamous cell carcinoma on her tongue; a woman who developed lymphedema after her breast cancer surgery; and me. The man and I are the only people interviewed who have metastatic disease -- cancer that has spread outside the original area of diagnosis.


I was happy to talk with the author and she did a great job of listening to me and telling part of my story in this article. 

Busy week

I have been so busy this week as I feel better and better on this chemo break.

On Tuesday I had my regular weekly meeting with the synagogue's senior staff.

Wednesday was the funeral of one of our shul's past presidents and longtime members. I also made sesame cold noodles for the meal of consolation. The family has one vegan and that mourner needed to eat as well.

Thursday was my monthly treatment with zometa, the bone-strengthening drug that I've been on for years. I went to Swedish's Ambulatory Infusion Center at the Cherry Hill campus this time and was happy to see two of the nurses who have been taking care of me for many years. Then I went to my support group, and last night there was a synagogue board meeting.

Today I will be interviewed by Q13 Fox as part of a group of young women with breast cancer. The same reporter did a story on us a few years ago and wanted to follow up now. I will post when I know the program will air.

My lymphedema is acting up again, and I have begun to wear my sleeve and glove during the day and my (new-ish) JoviPak arm sleeve at night. This may be a side effect of the Faslodex, or I may have increased edema for other reasons, but clearly my season of no garment during the day/compression at night is over for now.

Rebound insomnia

Last night I had a little queasy tummy before bedtime, and eating a dry cracker didn't quite do the trick. I pulled out the Zofran (anti-nausea med) and re-read the label. Sure enough, "may cause drowsiness" is right there in the tiny print. I took one and got into bed thinking I would fall straight asleep. NOT.

Three hours later, I'd been tossing and turning regularly. I was too stubborn to take Ambien or Ativan, and wasn't sure how the meds would mix with each other anyway. At 3 AM Rik got up. At 6 AM the alarm clock went off. I really don't think I slept for more than 30 minutes at a time all night long.

This rebound insomnia comes whenever I've taken a sleep aid for too many nights in a row. I'd been taking Ativan since I've been bandaging my arm at night and it's hard for me to sleep that way. A few nights ago I decided to switch to Ambien when I felt the Ativan wasn't working as well.

Perhaps I should have combined the Decadron high from Monday's chemo with coming off sleep aids. This makes three nights in a row of not-best-quality sleep. I will try to take a nap this afternoon to keep my head on for a meeting tonight.

Oh, and I finally got my made-to-measure JoviPak arm sleeve. It's big and blue, with quilted channels to provide compression, has a special extra pad to control swelling in the back of my hand, and fits perfectly. It should help me sleep better while providing lymphedema compression.

Lymphedema

I was so worried that my lymphedema would flare up with the hand-foot syndrome and thankfully that has not been the case. I have been continuing to wear nothing during the day and to bandage at night.

A few weeks ago I ordered (through a medical garment provider) a Caresia bandage liner to wear at night instead of wrapping. It's a big blue padded garment, very soft, with foam and stitched channels like quilting that break up edema. Unfortunately, when it arrived it was too big in the upper arm and perhaps a tad too tight in the hand. So the provider, Donna Martin of Martin Medical, will return the Caresia liner and recommended I get a similar but custom made-to-measure garment from another manufacturer.

It's too bad. I was sleeping really well with the Caresia garment, and it was very easy to put on and take off. But because it provided no compression above the elbow, it's not a good choice for me. I hope Donna will be able to return the unusable garment, negotiate successfully with the insurance company to pay for the custom garment, and get a new one to me quickly.

More pain

My pain from the hand-foot syndrome increased a lot over the weekend and so has the discomfort in my mouth and throat. After spending most of Saturday and Sunday on the sofa and taking close to the maximum daily dose of Vicodin, my plan is to try to get in to see the onc tomorrow if possible. Plus I will call the naturopath. Someone ought to take a throat culture and treat whatever is going on in my mouth, and I'm hoping to get moved onto different pain meds. My left hand is also puffy from lymphedema and the hand-foot thing and I am reluctant to bandage for fear of making the H-F syndrome worse. It's a vicious circle.

Of course my fear is that if I can't manage the side effects after only two rounds of Doxil, how will I handle four more treatments? Maybe I can persuade Dr G to reduce the dose or maybe he has other ideas.

Hand-foot syndrome

The hand-foot syndrome seems to have stopped with stingy pain on the tips of the thumb and first two fingers of my left (dominant) hand, which is also the lymphedema hand. Vicodin is taking care of the pain and reducing it to manageable levels, but it still feels weird and tingly. I notice it when trying to open a jar, tear a piece of masking tape, or use other small motor skills.

The soles of my feet feel less red and painful. I actually walked the dog and stood for an hour yesterday at the Gilda's Club Dog Walk in Magnuson Park. There were many booths from vets, groomers, and other dog-oriented businesses, as well as an agility demonstration area and 1K and 3K walks. (We just wandered around the tent area.) N came with their dog and the five of us had a jolly time meeting other dogs and their people. Bobber was not particularly enthusiastic about other dogs but extremely well behaved at the $5 dog nail trim tent. He jumped straight into the arms of the groomer and made friends.

I am hoping that the B6 complex and glutamine powder are working to reduce or at least halt the hand-foot side effects. Last night I bandaged my hand for the first time in a week and it was not especially red in the morning despite the tight wrappings. I will go for more tonight and hope in this way to manage my lymphedema despite the hand-foot syndrome.

Much better

After a night and a day, the nausea has calmed down quite a bit. Although I spent most of Friday lying on the couch, I feel much better today. The anti-nausea meds made me very sleepy, so one three hour nap turned into a second one after I took a break to eat lunch.

We had been invited to have Shabbat dinner with friends and I felt well enough to go. It was a large crowd of about 12 people, with much laughter and telling of jokes and stories. Not to mention plenty of delicious food, including home-made vanilla ice cream. It was good for my soul to be with people only a few days after chemo.

The hand/foot syndrome is bugging me now. The sole of my right foot and the thumb of my left hand are tingly and just at the edge of painful. At the naturopath's and oncologist's suggestion, I started taking vitamin B6 supplements and have increased the amount of glutamine powder. (I was measuring inaccurately. One of my teaspoons holds two actual teaspoons.) I hope this is as bad as it gets, because I really need to address the lymphedema issue again. After almost a week of doing nothing, my left hand and arm are okay but would benefit from bandaging at night.

Today is supposed to be warm and sunny and I look forward to catching up on a good book and taking it easy!

Doxil day 3

Although I really overdid it yesterday, I am satisfied with the way I feel so far on Doxil. The Emend has successfully prevented any nausea. (I took the last pill today.) I'm experiencing a little tingling in my right palm, a possible early warning of hand-foot syndrome, and have called the naturopath to ask about taking vitamin B6 pyridoxine to treat and/or prevent this from worsening. I am a touch paranoid about getting hand-foot syndrome in my left arm due to the potential impact on my lymphedema.

The orthopedist said yesterday that I had increased extension in my left arm from 50 degrees to 35 degrees, a significant improvement. We don't know if this is due to sleeping with the plastic brace gizmo for the past three weeks; NOT wearing it on Monday night with the lymphedema bandaging as part of hand-foot syndrome prevention; or the 8 mg of Decadron steroids I received on Monday as a chemo pre-med. Evidently steroids have some positive affect on joint issues. At any rate, Dr W is allowing me to stay out of the brace for two weeks to see if I continue to improve.

I wish I could say I slept better without it, but at least I wasn't forced by the gizmo to extend my arm as straight as possible all night long. I still awoke several times with severe hot flashes, the kind that leave sweat standing on my head and neck. And having Bobka's furry dog butt pressed up against my back may not have helped. But he is so cuddly.

First Doxil

Today I received my first treatment of Doxil (doxorubicin). First they gave me a new anti-nausea drug called Emend (given by IV), then i took Decadron (a steroid) and Ativan (for anxiety) orally. Then they finally set up the Doxil. Two chemo nurses sat with me to monitor how well I reacted and to make sure there were no problems. They gave it very slowly at first, then began increasing the speed. It took about 90 minutes - two hours for the whole infusion.

Doxil is a bright peach color, or as one nurse put it, exactly the shade of peach Jello. I don't eat too much Jello but I liked her softer imagery.

I felt quite chatty, especially compared with my morose behavior of the past few days. Either the Zoloft (anti-depressant( is kicking in quickly, or the steroids gave me just enough lift. D and C came to visit and I was able to have good interactive conversations with them both. D called me "perky." Either way, I rose to the occasion and provided the nurses with information they needed.

One bit was about the interaction of lymphedema with hand-foot syndrome. Evidently, if you get this, it comes on for a few days immediately after treatment and then eases. You can help prevent it by taking tepid showers; not using knives or tools; not kneeling or leaning on your arms. So far none of the providers recalls treating anyone with hand-foot syndrome who also has lymphedema. I have left a message with my physical therapist asking about her experience and I'm sure she will call back if she has a solution to offer.

Meanwhile we have decided that for these first three or so days post-Doxil, I will cease all lymphedema management to avoid putting undue pressure on my palms, and then return to night-time bandaging more loosely (if I can do this). At least I have a plan.

We came home with two prescriptions: Emend is given via IV on treatment day, and then via oral pill on each of the next two days. I have oral Zofran to manage additional nausea, should I experience any. And despite his not wanting to order me additional Ativan last week, Dr G wrote a new scrip for Ativan today, so I am covered for both anxiety and nausea.

It all went very smoothly. I was surprised that my counts were high enough to permit starting this treatment, but Dr G thinks it's best to start asap and he's the boss of my cancer. And last Thursday he said in plain words, "Your cancer is going to get better."

What's new

I was reminded today by a good friend that I haven't posted here in a few days. Things are generally okay but when piled together, I find I am in need of professional support.

1. Treatment with Abraxane continues to be very tolerable with minimal side effects. I have a CT scan tomorrow (and get the results on Thursday) which should indicate any response so far. Dr. G's plan is to treat me until he sees a response, then add two more months. I think that puts us at re-scanning in three months, getting the hoped-for response, and maybe ending treatment in November. You can see how so many months of chemo appears daunting to me.

2. Lymphedema continues to bug me in the same way -- too much edema in the hand, which is exacerbated by wearing the sleeve and glove. I've been taking a psychological break by not wearing anything during the day, and wrapping at night. This has gone on for about a week. I was measured for new custom sleeves last week. This new brand is supposed to be worn with a glove of the same brand; together they presumably put less compression on the wrist. A regular sleeve and glove, when worn together as appropriate, put MORE pressure on the wrist, thus giving the potential to increase edema in the hand by forcing more fluid there. More stress from this.

3. The left elbow continues to be stuck at about 40 degrees of extension. Even after wearing the black plastic brace every night for two weeks, over my lymphedema bandaging, I still have only 40 degrees of extension. My therapist worked with me to position the brace in a more effective spot on my arm, which may result in additional extension. Or not. I see the orthopedist next week. I do not sleep well at night while I wear this gizmo and yet it seems to be the only thing that will return full extension to my elbow joint. Again, more stress.

4. Pumpkin's death continues to hit both of us hard. He pops into mind at odd moments. It's hard to close my eyes and not visualize him looking back over his shoulder to see where I am. Having Bobka helps a lot but still...

5. Eating the low carb/low sugar diet that Dr. G recommended is very fatiguing. I am tired of having to think about every bite, having to plan my carbs each day. Yesterday after my low carb breakfast of cottage cheese, fruit and a latte, I was hungry again at 10 AM. A coffee and half a piroshky helped, as did the (rather dry) tuna sandwich later supplied by the Cancer Institute. I didn't eat dinner last night (read on). Today I ate bread at breakfast, which pretty much consumes my carbs for the rest of the day. But at least I felt full.

I feel so overwhelmed by all that I am managing that last week I decided to seek professional help. I had lined up an appointment with one of the two psychiatrists associated with Swedish's Cancer Institute only to discover that neither of them is part of my mental health benefit network. I found this out yesterday, after spending six hours at the Cancer Institute, and was given one name, in all of Seattle, of a psychiatrist who specializes in treating people with chronic illnesses. He has yet to return my phone message from yesterday. I feel I am in serious need of anti-depressants but would prefer this kind of drug to be managed by a mental health professional rather than my oncologist or even my primary care doc, who is not in this week anyway.

When things are too much for me, my preferred method of coping is to go to sleep. I got into bed at 3 PM, with instructions to Rik to wake me if the one shrink called. I did get up a couple of times, but basically I self-medicated and spent 18 hours in bed. I woke up this morning, not exactly refreshed, but feeling more ready to take on a new day. That lasted until now, when I started writing this post.

Long story short, if you don't see a new post from me, it doesn't necessarily mean all is bad. In the past week I also chaired my first meeting of the synagogue board as president; went shopping for makeup with a friend; and laughed through an animated movie. In coming weeks we may go out of town. I appreciate that you all care and I promise will keep up on my blogging as much as my energy permits.

Down and up and down and up and down

The past few days have felt like being on an out-of-control elevator: down and up and down and up and down again.

Thursday
The lymphedema therapist listend to me kvetch about my continued frustration with lack of elbow response and edema issues and recommended I choose not wearing compression garments either for a couple of days or nights. I chose daytime and went without a sleeve and glove for the remainder of Thursday, Friday and Saturday. This was an UP.

Friday
Because I had a naked arm (one of only a few occasions in the past eleven years), I overdid things. I took the dog to the vet, had a morning meeting, went to my yoga class, ate a quick lunch, bought groceries, picked up Rik and got the dry-cleaning. By the time we came home I was prostrated with exhaustion from running around for more than six hours straight. I immediately went to the sofa but was unable to sleep. I also couldn't move, so there I lay until evening. We ate a bad frozen pizza from Trader Joe's for dinner, and Rik went back to school for a meeting. DOWN DOWN DOWN.

Saturday
I woke up feeling refreshed enough to go to synagogue. (I am also constitutionally incapable of being in the house for 24 hours.) I cam home and despite the bright, sunny, warm day, again had to lie down but was unable to nap. My arm began to show not having been in a daytime compression garment for two days. DOWN.

Sunday
I put on the compression sleeve without the glove in hopes that the sleeve alone would be enough. Went to the grocery store to pick up a pie for Rik's 50th birthday. UP. Tried to pull some weeds from the yard -- couldn't. Stupid elbow! DOWN. Decided to accomplish something within my capabilities and did some ironing. Definitely UP. Put out pie, bubbly and freshly made lemonade for our friends. UP.

Not five minutes after the first people arrived, Pumpkin came down on his bad left rear leg and yelped. HUGE DOWN. We called the vet, they told us about the nearby emergency clinic. In the meantime more people are arriving and everyone has to know what's happened. In this barely controlled chaos, N intervened, suggested we celebrate Rik's birthday by toasting him and eating the pie; we could always go to the emergency clinic later if Pumpkin didn't improve. N sat on the chaise outdoors with Pumpkin on her lap, where he relaxed and we began to as well. After toasting Rik, eating strawberry-rhubarb pie and vanilla ice cream, we all felt better. More UP.

Later, after everyone had left, N came back with some doggy anti-inflammatories and Pumpkin ate one with his dinner. He finally relaxed enough to sleep. I wrapped my arm (my hand was very puffy from being in the sleeve but no glove all day) and was very cranky from all the stress. DOWN. Tried to nap, again couldn't sleep but couldn't move from the sofa. DOWN.

Rik ordered Chinese food for dinner but didn't realize the restaurant had given us someone else's order. Instead of tea-smoked duck and steamed vegetables with rice cakes. we received two containers of unidentifiable fried food which were covered in chili peppers, noodles (but no vegetables) and white rice. Is this how the rest of America eats? DOWN. One container appeared to hold pork, the other perhaps fish. I was tired and hungry and disappointed but not energetic enough to insist Rik return and get our correct order. He ate the noodles and fish. Since I'm eating a low carb diet and had already had pie and ice cream, noodles were out for me and the "fish" was inedibly spicy, even for me. Rik offered to make me something, but I had already eaten eggs that morning. I tried but could not summon the energy to even open the jar of peanut butter. DOWN DOWN DOWN DOWN.

I gave up and went to bed. After dropping the pills on the floor twice and roaring with rage and frustration, I took a sleeping pill and some ativan and pulled the covers over my head at 7 PM. DOWN.

Monday - Rik's 50th birthday
I slept until 5 AM with brief lucid periods when I heard Rik bring Pumpkin in the bedroom and talk on the phone. I never did hear him come to bed.

Chemo went fine today. UP. I again tried to nap afterwards but couldn't sleep. Maybe I need to try a different location.

At 3:00 we took Pumpkin to the vet. He is still there, being sedated for an xray and given IV pain meds for an examination by the doctor to determine what's wrong. Apparently his knee is injured but that's all we know now. DOWN. More later.

Haopy birthday, Rik. What a way to celebrate.

A small fall

Yesterday after eating lunch with a friend I tried to get up from the bench I was sitting on. My left hand (in the glove) slipped out from under me and then my legs went flying. I landed on my left hip, may have knocked my left elbow, but didn't appear to do any damage to it. My friend helped me up and a waiter came to make sure I was okay.

For weeks now, in the back of my mind, I have worried what would happen if I fell again. Now I know. There's something satisfying about facing your fears.

After my original cancer and lymphedema diagnosis, I was petrified that I would have an emergency admission to the hospital and not be able to tell anyone about the lymphedema. Then I fell and broke my leg and the first thing I said to Rik (after "Call 911!") was, "Go get my bandages."

Now I have faced the fear of falling and it wasn't as bad as I expected. My hip is pretty bruised, but some arnica gel will help that heal. My elbow seems to be fine. Thank God for the Zometa, which has strengthened my bones so that I can take two falls in nine weeks and not break anything.

Too much stress

Today started out as a nightmare -- literally. I was dreaming and realized that in the dream I was wearing the wig. Uggh. Not the way I want to see myself.

This was followed by Bobka the dog needing to go out to pee at 5 AM, and my inability to fall back asleep after getting up to let him do so. Even taking half a vicodin didn't relax me enough to sleep again, possibly because I knew I had to get up at 7:00.

Rik woke me before he left the house and I struggled to get started, including a walking the dogs only up the block and back. I had to leave the house at 8:45 for a 9:20 appointment with the orthopedist.

I sat in bumper-to-bumper traffic in the I-5 express lane (!). There must have been something at the Seattle Center, because the traffic cleared up just after the Mercer Street exit. By this time I was already 10 minutes late to the doc and had made an (illegal) cell phone call from the car to let them know. Well, since I used the speaker phone I guess it was legal, but I still had to dial. No worries though; the traffic was completely stopped. It took me an hour to drive about five miles.

By the time I arrived at the office I was out of breath, experiencing high blood pressure and rapid heartbeat. A little ativan calmed me a bit, but I was seriously stressed.

Dr. Wagner the orthopod wants me to try wearing a plastic splint over my lymphedema bandaging at night. I had to approximate the bandaging by wrapping my arm with the cotton-like padding they use under casts. (It took five rolls.) The splint is a piece of black plastic, warmed in 150 degree water to make it pliable, and molded to the shape of my arm. It extends from just below my shoulder to halfway down my forearm. The intent is to relax my arm over the course of eight hours in bed.

Now I have yet another gizmo to deal with. At least I only have to wear it at night. After yesterday's tumble, I told Dr. Wagner that I was seriously maxed out with everything medical in my life and could not promise to be compliant in the daytime. He actually understood, part of what makes him such a great doctor.

I got home eventually and am about to crash on the sofa. Hopefully some extra sleep, followed by cooking a nice dinner for friends, will help me recover my equilibrium. Right now my perpetually half-full glass feels more empty than usual.

Lymphedema legislation

I just learned about House of Representatives legislation in the works to provide Medicare coverage of lymphedema diagnosis and treatment. Here's what I wrote to my Congressman, Jim McDermott. I hope you will consider taking action also.

To find and contact your Congressional representative, click here.

As an 11 year breast cancer survivor living with lymphedema, I sincerely hope that Rep. McDermott will support H.R. 4662: Lymphedema Diagnosis and Treatment Cost Saving Act of 2010.

Medicare and Medicaid do not currently pay for treatment of lymphedema, a life-long condition related to surgery for removal of lymph nodes. It is also congenital. HR 4662 would cover diagnosis, compression garments, and special physical therapy that people living with lymphedema require to maintain good health.

I've had metastatic breast cancer for 7 years, am now age 50 and hope to live long enough for my lymphedema treatment and garments to be covered by Medicare.

Given the large numbers of women diagnosed with breast cancer every year in our country, who will have a lifelong risk of developing lymphedema, this is an enormous hole in our health system. I hope Rep. McDermott will help rectify this lack.

To read more about the mom whose son was born with primary lymphedema, and who started this bill, read this article.

Cleared to drive!

On Thursday I called Dr. W the orthopod with the question I forgot to ask when I saw him earlier in the week: when can I start driving again? On Friday his assistant called back with the good word that as long as I could grip the steering wheel safely, he thinks it is okay to drive while wearing the brace.

As it happens, a few months ago my physical therapist gave me a sheet of blue sticky stuff to wrap around items in order to make them easier to grip. I was concerned that I didn't have a good handle on the steering wheel while bandaged, and this stuff was supposed to do the trick. Rik and I attached a strip around the 10 AM and 2 PM points on the steering wheel this morning and off I went!

I sat behind the wheel and heaved a great sigh of relief to feel more independent after 5+ weeks of having to be driven everywhere. The drive to shul is short and familiar. I got the last parking spot in the lot. If one hadn't been available, I would have turned around to go home and Rik could have taken me back and dropped me off. I didn't feel quite ready to parallel park on my first outing.

I plan to continue to ask for rides to medical appointments this week, since I really don't want to parallel park, or park far away and have to walk unescorted for a distance. I am still nervous about falling, even though I have not begun to develop the peripheral neuropathy that can be associated with the abraxane. And of course I am holding my chemo mantra in mind: well tolerated, minimal side effects, very effective.