Sorry I haven't written

The last few weeks I've been struck with terrible fatigue. It's probably due to the double dose of  Keppra, the anti-seizure med. Dr G  increased it and then went  out  of town, so I  haven't been able to talk with him. Fatigue is also one of the side effects listed for Keytruda. Maybe the combination of the two drugs is causing my fatigue. Who knows? I see Dr G in two weeks and will ask him then.

At any rate, I'm tired all the time and usually have about one hour of energy before I need to crash. That's not enough time to do much more than shower and dress, or eat something, or start some laundry. I'm still not driving due to the seizure meds.

Last night I actually had three focal point seizures like the first one. We saw a play a few weeks ago and I had several  bouts of the same thing -- my right hand shakes uncontrollably, moving in and out of a fist; my thumb gets "caught" between fingers and everything freezes up for a couple of minutes; I feel panicky but it's all over in 2-3 minutes. Still, it's hard to type with only one hand, even if it's my dominant hand, and the fact that the seizures haven't stopped completely frightens me. Perhaps I should call the gamma knife doctor until I can see Dr G.

I will try to post more frequently.

Keytruda

Merck approved Keytruda for me. Just in time -- my tumor markers have risen more than 200 points in the past 2 months while I've been off treatment. And I gained 10 pounds while on steroids again. My legs are swollen - time to restart Lasix too.

Here is information about Keytruda. This is the drug that former President Jimmy Carter and many other melanoma and lung cancer patients have used with tremendous success. I'll get it once every three weeks. Of course, there's no way to know in advance how successful it will be with me. 

I start tomorrow.

My dad's army story, for this Memorial Day

Dad always said he had a "good" war. This is what he meant.

He enlisted at 18 in January 1945. His mother went with him to the ferry to NJ and waved goodbye. He spent three days at Fort Dix (?), where he was issued a uniform and dog tags. The army sent his clothes back to his parents in the Bronx. He beat them to the haircut and had already had his hair cut militarily short.

Dad then went to Florida for basic training for six weeks, where he learned to master peeling potatoes. He was given a seven day leave before shipping out, but it took 2 days to travel by troop train from Florida to New York City, so he only had 5 days of leave.

He sailed to Le Havre where he was posted to the Army Corps of Engineers. Because of his experience with his father's seltzer delivery business, he spent his service driving trucks, including a 22-wheel rig. He drove from Le Havre over the mountains and south to Rouen and Marseilles; to Belgium and Holland, where he saw the famous fields of tulips; into Germany; and went to England for a special job for Eisenhower. After that trip he was thrilled to be personally thanked by General Eisenhower. He saw the concentration camp in Strasbourg.

He once ran out of gas somewhere in France. Having learned a little bit of French, he hiked back to the closest village, where he made a telephone call. He said to the operator  “Le militaire American.” The operator didn’t understand his accent, so he repeated  “Le militaire American.” Eventually they connected him and the Army came by with more gas.

Dad attended an Army buddy’s wedding to a French girl. At the dinner after the ceremony, they ate soup, a main dish, and served the salad at the end! He was very surprised by this custom.

His cousin Eva’s daughter came to Europe on a war bride ship and looked for him in Le Havre, but he was posted to Paris at the time. So she gave his buddies all the fresh milk and fresh food she had access to, and they all got sick. They had very little fresh food and were used to eating mostly powdered, dehydrated and canned items.

The Germans had sunk a freighter in the harbor at Le Havre to prevent any more Americans from arriving. When the tide was in, you could only see a main pole. When the tide went out, you could see the whole ship.

Dad said something about being in the Army was the best two years of his life. He was a young man, he traveled to five countries. He never saw combat. He served his country. He was honorably discharged in 1947(?) because the Army needed his unit to clear the harbor at Le Havre after the war in Europe had ended.

My dad the soldier with his parents, taken some time before he shipped overseas during WWII.

The latest from Dr G

I saw Dr G yesterday and he spoke several times with my cousin Dr Rich Schilsky. They agreed I should try the immunotherapy drug pembrolizumab that reportedly works so well for former US President Jimmy Carter and other melanoma patients, so Dr G will try to get my insurance company to approve it for off label use. Dr G told me he had the first patient to use this in Seattle and has several others, both with and without melanoma, who are taking it, with mixed results. Some have fantastic responses, with no or minimal side effects. One died. It's impossible to say how it might affect me, but it's a new option.

Still slow

The anti seizure meds still make me feel slow. I hardly have energy to shower and dress so spend several days in my pajamas in a row if I don't have to go out. Dr G may have something to recommend to me re chemo. He doesn't want me to take a break although that's what that's what the past two weeks have given me (without more energy).

No more to say now.

Seizure update

Yesterday I saw Dr Vermeulen, my radiation oncologist who zaps my brain mets with gamma knife. In November she hit 23 brain mets and was happy with the results. She says the two mets which swelled and caused the recent seizure were not problematic and would likely respond to both anti-seizure meds and steroids. But I won't be  allowed to drive for at least four months until my next brain CT.  This is problematic - no running errands, must get rides or Uber/taxis to appointments, etc. It will put more pressure on Rik and our friends. Thankfully Swedish has taxi vouchers through NW Hope and Healing, a local organization for breast cancer patients.

I feel more disabled than ever before. Not having independence of movement  is really tougher than I could imagine. On the other hand, I also feel reassured by Dr V.  I see Dr G on Thursday and will get his take on the seizure. In the meantime I'll try to enjoy the sun and not freak out too much.

More downs and some ups

I had a seizure yesterday in my right arm. First time ever. Must  have something to do with brain mets and reminded me of a friend's recent experiences with TIAs (mini strokes). My right hand made a fist and I couldn't relax  it. My arm pounded against my chest. Tried to use warm water to do so and then my hand  opened and I couldn't lift my arm. The whole thing lasted about 10 minutes. A friend took me to Cherry Hill ER where the neurologist on call diagnosed a focal seizure (one limb affected). I was glad I thought to say I'd had a stroke. I had immediate access to an ER room, nurses, doc, etc. Cherry Hill is still the best.

It was a scary day but I got to go home around 4 pm. My right arm is not working as well today even though I'm left handed things are complicated. Typing for instance - back to hunt and peck with pone hand like in high school. I'm not allowed to drive.

Inpatient again

I was discharged yesterday after a week inpatient at Swedish Medical Center.  Shortness of breath brought me in on April 23 in the wee, early hours of the morning. I had a pleural effusion (fluid in the lungs), which was drained the next day, then I stayed for the rest of the week. Not lung mets, thankfully.

So now I'm trying to rest at home, cuddle with Rik and the dogs, and get some energy. More soon.

Steroids

I am hopefully tapering off the prednisone completely after this week. It's been more than a month, I've gained 14 pounds (which on my 5'4" body means I can't fit into much of my clothing) and I haven't slept well in weeks.

No matter what steroids do to make you'll better, you can't just stop them "cold turkey" and they have unpleasant side effect, namely: hungry all the time (which means weight gain) and keep you awake at night (which means crappy sleep).

I guess the weight will start to disappear as I feel less hungry at every hour of the day. Sleep is more difficult. I've alternated between Ambien and Ativan, but the Ativan no longer seems to work, which leaves me taking Ambient every night until the weekend. Then no doubt I will develop rebound insomnia and not sleep for a few days from that.

Cancer sucks.

But before I get off the steroids completely, Dr G wants me to have a Cortrosyn (cosyntropin) stimulation test (blood test) to see what my thyroid is actually doing. Apparently this test means multiple blood draws over several hours, potentially while fasting. I don't know but  I guess I'll find out more later this afternoon when I see him.

And then maybe a little shopping. It's the last day of a Macy's sale and there's a pair of sandals I want to try on.

PS No trip to Macy's, because it took forever to schedule everything with Dr G's new front desk staff, who seem seriously undertrained after my years with the staff at Minor and James.

MORE PS'S:

My tumor markers are down by 100 points!

My brain tumors appear smaller and there are no new ones!

I get to stop steroids tomorrow!

Everything is coming up roses at the moment on the cancer front. The Alimta and bicalutamide appear to be working.

Back on line

I've been off blogging for the past two weeks. Between recovering from the blood transfusion and getting ready for the Pfizer re-visit of Story Half Told, things have been really busy.

About a month ago a Pfizer representative contacted me again to say that they wanted to revisit we five women from last summer's photo shoots. So sadly, Holley Kitchen died in January at age 42, but her husband and young kids were willing to participate in a follow up on life without that amazing woman. I was willing, and I believe Carol, Jen and Khadijah were also. That makes an update on all five of us. It'll be done at a slower pace than this hectic summer when they tried to get all of us during the same month.

Timing is everything. John Frazier, the guy in charge of the PR team, was able to come to Seattle last week and so was Angelo Merendino, the photographer who will shoot all of us this time. We spent Saturday night through Tuesday evening together:

Dinner to get to know one another (at Barolo, a great Italian place downtown);

Brunch with T and S, our friends since I joined Radost Folk Ensemble, who just happen to share the same wedding anniversary date with us, which we've never celebrated together before;

A long talk into Angelo's camera to record some ideas and thoughts on these experiences, my life with metastatic cancer, etc.;

Labs drawn by the Amazing and Wonderful Nurse Jacque;

Lunch at Cafe Presse, my favorite place on Capitol Hill with the best fries ever;

A lovely tea party at J's home, with many of the friends who've taken me to chemo, brought meals, and walked dogs when Rik and I needed help;

A great visit with Rabbi Borodin, which included a review of part of the Yizkor service which we posed for the camera;

Lunch at the Ravenna's Varsity Restaurant (more eggs with hollandaise sauce);

And an appointment with Dr Goldberg, at which Angelo was like a fly on the wall. Dr G and I talked freely.

Lastly, Ang took some photos of Rik and I. First we tried to get me into my wedding gown, which would have fit if we could've unzipped the whole thing but the zipper got caught at the waist and no one could have shouldered into it. I was reminded of my parents' 25th anniversary (I was 15, Susan was 13) and their friends made Mom get into her wedding dress, the dress we used to play in, all stained and torn, for  a mock remarriage ceremony (she wore a bagel as a ring). After the party i the wee hours, we four gathered in their bedroom and my mother was shouting to my dad, "Just cut it off me!" (It must have been tight, hot and uncomfortable.) And of course my dad was trying to be patient and replying to Mom, "Wait, I've almost got it." This was with the original six inch zipper. I'm so glad K remade the bodice for me with a twelve inch zipper, but it still didn't help to have had the dress sit in a box for 21 years.

So I held the dress over my clothing, Rik took up the train, and he wore the veil. It was cute. I hope.

We went outdoors to take more photos in the back and side yards. Then we all trooped back in to warm up and Ang and I recorded more about the past few days. These two recordings will give context to the photos when the exhibit comes together.

They left Wednesday morning and both have called or texted me to see how I recovered. I spent that next day in my PJs doing nothing; went to group on Thursday; and cooked kosher paella for dinner Friday night for C and M (with chicken, halibut, and "soysage"). We had missed his birthday, so this was an impromptu celebration. My nephew was in town to visit his girlfriend and we took them to to brunch on Saturday at Portage Bay Cafe (sorry, even I can't eat eggs with hollandaise three times in the same week). Sunday I ironed all Rik's shirts and we joined G and W for a significant birthday dinner.

It's been a crazy week. I'm still on steroids but tapering off with prednisone. I've gained eight pounds in eight weeks because the steroids just make me want to eat all the time. I hope to start losing the weight in a week or so and get back into more of my clothing.

And soon I will talk about the good results of today's brain MRI.