Bites from the past

     Above, granola and the newspaper make a nice start to 

         the day. Below, Margaret gathers some of the ingredients.

When I moved to Western Massachusetts for a job at the former Transcript-Telegram in 1979, I lived in a funky apartment in Northampton. The paper, in Holyoke, Mass., was a good little daily. The place was lively, filled with smart, mostly young reporters and editors who worked (and played) hard. This was in the days of typewriters, and at deadline, there was a cacophony of reporters banging on keys and ripping out pieces of paper. There was a rush for the one OCR (optical character reader) where you had to feed in your stories and then a rush for the couple of computer terminals where you needed to read your story before passing it on to an editor. 

But the reason for this post is not to wax nostalgic about the good old days of journalism – we did have our fun – but to talk about a connection to this era: granola.

The funky apartment fit my tastes nicely. The landlord had never gotten around to putting doors on the kitchen cabinets, but I kind of liked that unfinished look. It was in that kitchen that I grew bean sprouts in a  jar on the windowsill and made my own granola. I can't remember where the recipe came from.

I met my friend Margaret at the paper, and we formed a lifelong friendship even though we didn't work together very long. We were both there for only a couple of years before going to bigger newspapers, but it was so intense it seemed like much longer.

This winter, when I was in the hospital waiting for my transplant, Margaret was going through some recipes when she found the one for granola (recipe below). She hadn't made it in over 30 years, but she made a batch and brought me a jar. It was delicious! (Ah, and yes, it brought remembrances of things past.) Not too long ago, I called her house and got her husband, Nick, who said Margaret was busy "making Ronni's Granola." I got all excited and thought she was making me another jar, but really he was just using the name of the recipe. When I told her my misunderstanding, she did, of course, make me a jar which she brought to the infusion room one day when I was getting platelets. (She lives and works in the Boston area.)

Now that I have a little energy back, I've made it myself a couple of times. There was a gap in between both times, and after the second batch came out at around 11 p.m., I devoured a bedtime snack of granola and blueberries. 

On the health front, I went to the clinic Friday instead of my usual Monday, due to availability of platelets. My platelet count was 10. Well, at least it wasn't in the single digits. White count was stable, but hematocrit had dropped to a borderline 25-ish, after I was so happy it was 31 on Monday. I could have gotten blood Friday, but I actually feel OK, so I'm going to wait until next week. Katie drove home while I slept off the Benadryl. 

Here's the recipe for what we now call Ronni's and Margaret's Granola

6 cups old fashioned oats (not quick cook)

1 cup shredded coconut

1 cup wheat germ

1/4 cup shelled sunflower seeds

1/4 cup shelled pumpkin seeds

3/4 cup halved cashews or slivered almonds

1/2 cup sesame seeds

1/2 cup sesame cooking oil

1/2 cup honey or maple syrup

1/3 cup water

1 1/2 tsp. salt

1 1/2 tsp. vanilla

Mix liquids and salt over heat

Pour over dry stuff and stir thoroughly until coated

Spread out on two greased cookie sheets

Bake at 350 degrees for 1/2 hour; check frequently and turn at least once

Add 1 cup raisins or cranberries

Running errands, chasing dogs

Errands can be a real pain. But when you have to ask everyone else to do them for you, you want to run errands yourself because it will make you feel more normal.

Not too long ago, I could hardly walk to the corner. Now I have increased my walking distance; I go a mile around the lake but instead of driving there, I walk, which probably adds another half-mile or so. At the lake, the joggers run past me. I have tried running a couple of steps, but my legs have no spring, so obviously I am not ready.

But yesterday I was ready to do some errands. I leashed up the dog and walked down the street to the fire station, where I put my water bill payment in the slot. Then I went to the mailboxes outside the post office and mailed a couple of bills. Finally, I walked down to the street to the optometrist's, hooked the dog up outside, and went in and got my glasses adjusted.

Woo hoo! These felt like really big accomplishments.

Then I walked the dog around the lake. She had been swimming a lot and smelled awful, so we had her groomed last week. I hate to keep her on the leash, because she needs the exercise, but I didn't want her to go in and get all smelly. So we made a compromise: I let her off in a spot away from the swampy areas, so she got her swim in and a little romp and didn't get stinky.

I had a couple of mishaps, too, but they were kind of funny so I didn't mind.

We have a little wooded area in the back of our house where we sometimes let Maddie run and pee. She usually just runs back in the door for her treat. Yesterday she decided to dash through the trees into our neighbors Eugene and Susan's yard. This involved me pushing my way through the trees to go get her. Eugene and their son David were reading in the yard. Maddie ran over and started licking David's feet, then ran around in circles, at one point grabbing Eugene's sneaker and running with it. I used my sternest DROP IT and she finally did.

They didn't seem to mind, but it was a little embarrassing. In any case we used it as an opportunity to chat for a minute. I couldn't get the dog to come back with me, so Eugene tied a rope around her collar and I got her back.

Later in the day, I opened the cabinet to take out a box of fettucini. By accident I held it upside down and the contents fell out. Pick-up-sticks all over the place. Actually it was near Maddie's bowl, and when I said "leave it" she thankfully did. So I cleaned it up in peace and found a new box of pasta.

Kind of annoying. Kind of normal.

Lost and found department

I went crazy over losing a certain necklace.

I bought it with Diane at one of our favorite stores, Limited Editions, in Newton Highlands near her house. It was right after the presidential election. She bought a necklace also. Feeling slightly goofy, we called them our Obama necklaces. They were a little bit expensive, but we were in a celebratory mood. Instead of a chain, mine has tiny stones and a pendant made of two stones, a smaller on top of a larger. I forgot what they are, but one is clear and the other is a cloudy grey.

When I left Diane's house to come back home, I left some jewelry on a dresser, figuring I'd pack it up next time. I remember thinking I had left two necklaces, one of them the "Obama" necklace. But when my brother-in-law packed it all up and gave it to me in a baggie, the Obama necklace wasn't there.

I got that feeling you get when you can't find something (like car keys) and you are SURE you left them in one spot but they are not there. I really wanted to find that necklace, although I did know that I have probably too many necklaces already and only one neck. I asked Diane over and over again to search areas of her house where in might have gotten lost. She said repeatedly that she just couldn't find it, and it would turn up in a bag or a pouch somewhere.

Last week, I went to the store to see if they had another. They said they weren't even sure what it was, and that they had only had one for sale anyway.

A while ago, I wrote about a similar problem with a "missing" bracelet that I found in my room. I was doing some yoga and stretching when it popped into my mind where it might be.

Well, yesterday I was doing the same yoga and stretching when an idea popped into my mind. I wondered if the bracelet was in a dresser drawer where I hadn't looked. I got up, opened the drawer, and put my hand on a red jewelry pouch. The "lost" necklace was in it.

Naturally, I called Diane and apologized. I also have to draw the same moral that I did with the bracelet: If you let something go a little, as happened when I was doing yoga, answers will come more easily than if you search too hard.

Speaking of losing things, my friend Vytas sent me a funny e-mail called "Questions and Answers from an AARP Forum." Here's one that I related to. Q: Where should 60-plus year olds look for eyeglasses? A: On their foreheads.

I'm not 60 yet, but I constantly lose my glasses. In the hospital I was always looking for them after I took them off for one test or another. Diane bought me one of those beaded necklace things that attach to the glasses so they're always around your neck when not in use, but I kind of forgot to wear it.

Without the glasses, I can't see well enough to find them, so I often walk around patting areas or getting one of the kids to find them for me. I told Vytas I just came up with a system. I put the dark-rimmed ones down on something light, and I put the ones with the thinner wire rims down on something dark, so the contrast helps me see them. Of course it didn't help today when  I put the glasses down on the bed and then took off the dress I wore to the clinic and laid it on top of them.

Today's clinic visit was relatively short. My platelets were 15, hematocrit 31 (up one from last time all on its own) and my white count was 5.7 (normal). I got a bag of platelets that Diane had donated. Dr. Alyea came by and said he was pleased that I had held on to a good amount of platelets over the weekend, and that my counts looked pretty good. I'm not sure if I have to go back this week or if I can wait until next week; I'll talk to Melissa about it tomorrow. 

Travels on the Pike, busy week at home

First of all, thanks to everyone who gave advice and support about my work and insurance situation. (Explained at the bottom of this post.) I did fill out the COBRA paperwork, which I got a few days later. I have questions about the ways, unfair I believe, that they are treating me differently from the other laid-off employees, but I don't think I should go into that now. Sigh.

My friend Barry drove me to and from my appointment yesterday. At 5, my platelets were low again. On Monday, they didn't have the matched platelets I usually get, so they gave me the freshest available from the general pool. I haven't gotten much of what they call a "bump" from the general platelets, but I had to have something because they were so low. In the meantime Diane donated the platelets that more closely match my typing, and so I went back yesterday to get them.

I didn't need blood (WBC was 30), and my white count was good, too, at 5.8. Diane had actually produced two bags of platelets, but Dr. Alyea ordered one. (Usually if two are available, they give me both and say to come back in a week.) Barry was sitting with me when my infusion room nurse said that Dr. Alyea wanted me to come back Monday and have my counts rechecked and get the other bag if I need it.

Barry must have seen that look come into my eyes. "Don't make anything of it," he said.

Later, back home, I mumbled, "Why would he want me to come back so soon? Maybe he found something in my blood work and he wants to see if it's still there on Monday and he'll tell me then." Katie was the voice of reason. "Mom, we've been through this before," she said. "If he had something to tell you, he'd tell you right then." Oh, OK. New thoughts: He wants to recheck the platelets earlier than usual so he can get an idea of when they start to fall, or, he was doing something else and the nurse asked him over the phone what he wanted to do and he said, "Oh, just tell her to come back Monday," without it meaning anything.

Gotta love that Masspike (formally known as Massachusetts Turnpike, the highway that we take to Boston.)

Well at least I'm not spending all of my time driving back and forth. Erin, my yoga teacher and now friend, came over for tea Tuesday morning. She brought a delicious pineapple which she cut up in no time. (My habit is to wait until I think they're ripe, then realize they're overripe, then put them in the fridge and then throw them out...well, not all of the time.) I told Erin that I was trying some standing poses, such as triangle pose, but having trouble keeping my balance. She showed me how to do some of these poses using a chair so I don't have to worry about toppling over.

On Tuesday night, Deb, Charlotte and their black lab puppy, Mary Margaret, came over for our annual Fourth of July cookout, three days late, but who cares. Joe cooked hamburgers, chicken and kielbasa on the grill, and we had salad, fruit salad and potato chips (delicious and nutritious) plus chocolate sour cream cake for dessert. 

The puppy is now four months old and quite feisty. She and Maddie ran around and around, tumbling over each other and at times playing tug-of-war with Maddie's new rope toy. I think Maddie had enough – sometimes she pinned the puppy and held her down – but she doesn't really know how to put her in her place. I'm not sure she wanted to.

Today my neighbor, Susan, and I (with dog) went to Deb's for four-o'clock tea. It wasn't really tea because we all drank Deb's good strong coffee, but it was fun to call it that. Deb arranged a platefull of goodies, and we ate and talked while the dogs played in the fenced-in yard. Maddie has been zonked since we came home. Meanwhile I'm trying to walk a little farther, maybe a mile and a half or so, which I did before going to "tea." So I should sleep well too.

This is what I do for fun

Katie drove me back and forth to Boston yesterday. It worked out well for both of us. Diane came and took her for a walk in Brookline, then she came back and took her own walks, popping in and out of the infusion room to check in with me.

She's been playing a song from the opera "Hansel and Gretel" that has gotten stuck in our heads. Various translations give it different names; in hers it is called "Brother Come and Dance With Me." As we approached Dana-Farber, I began singing my own lyrics to the catchiest part of the song: "This is what I do for fun, this is what I do for fun, fun fun fun, fun fun fun, this is what I do for fun."

When I went to get my blood drawn, the nurse opened my files and said something about "antecubital fossa." For a brief moment I panicked at this new word. "What are they looking for now?" I wondered. The nurse explained that it was just the term for where they usually draw my blood – the depression at the bend of the elbow. Oh.

I knew my platelets would be low, because I was counting petechiae (tiny burst blood vessels) again, and I was right: They were a pathetic 4. I was surprised to learn that I also needed blood because I had just gotten it a week ago and I felt OK. My hematocrit was a borderline 25. My white count, at least, was stable.

I saw Melissa before I went into the infusion room and she said that she and Dr. Alyea would come in to see me. "He has some ideas about why all of this is happening," she said, referring to the low platelets and rbc. Panic time again: "What KIND of ideas? Bad ideas?" I said to myself. I kept it in, though, and went off to get transfused.

When they came in, Alyea said my body was obviously chewing up platelets and red blood cells. He said it will probably help when they take me off of one of my drugs, Prograf, but it's too early to do that now. He said he was putting me on a low dose of steroids for the GVHD found in my esophagus, and that this might help with my platelets and rbcs.

Neither of my scary projections came true. I wish my mind would leave me alone.

I closed the place down again at 7:30 p.m. Katie drove back with no problem. All in all it was fun fun fun.

Lured out of bed for a good cause

The sound of the phone ringing woke me in the middle of the night.

Well, it wasn't actually the middle of the night. It was a little after 8 a.m, and it was my friend Joe Smith telling me that he and our friend Ken Ross were coming over soon for "breakfast at Wimbledon."

I groaned. I had gone to bed at my customary time – around 12:30 a.m. – and so it really felt like the middle of the night. I've been setting my alarm for 10 a.m. just so that I don't continue to lie in bed until 11 or sometimes noon. But 8 a.m.? Ken had said the other day that they might come over, but since he never confirmed, I figured it wasn't happening.

I said to come on over. I put on my traditional outfit, starting with my running pants. Then I lay back in bed – always a bad choice – and of course fell quickly back asleep. I woke up to the sound of their cheerful voices at the door. So I ran down, still wearing the T-shirt I wore to bed, and looking as disheveled as a person with nearly no hair can. I let them in and ran back upstairs to put on a better T-shirt and splash water in my face.

Ken had brought strawberries, one of the ingredients for "breakfast at Wimbledon." (The other is cream, which we didn't have.) Joe brought coffee, and I supplied banana bread and zucchini bread. 

We watched the better of the two women's semifinals – Serena Williams defeating Elena Dementieva of Russia 6-7, 7-5, 8-6. As you can see from the scores, it was a close match, and it had a lot of great points. Serena will play her sister Venus in the women's final. It was a good morning.

I got my taste for coffee back, which makes me feel closer to my normal self. Joe's strong coffee really hit the spot. Still, I'm trying to not get re-hooked on caffeine, so I'm drinking decaf or half-decaf.

Meanwhile, on Tuesday, I learned that I was among the latest group of people being laid off from the newspaper. There were about 12, including reporters, copy editors and photographers. It doesn't affect my income, because they weren't paying me any money, but of course it does affect my insurance. I will have to pay into COBRA for 18 months, and then I will be cut off and will have to find my own insurance. I think they are trying to deal unfairly with me, because the human resources director, who called me, said the company was cutting me off from insurance the next day.

I said that's impossible because I go to the clinic every week and I haven't even received the COBRA paperwork. They said OK, July 13. Later I learned that it's illegal to cut you off abruptly and that they need to give you 30 days. They gave everyone else 30 days, and me half that.

Unfortunately, they are treating me differently, and unfairly, in a range of other ways. These are things that I am working on. 

I wish people would read newspapers. It is so sad that such a wonderful industry seems to be dying. All I can say is we had a good run. As for me, I'll deal with the job thing later. It's not really at the top of my list right now.

Things that make sense

"Finally, something that makes sense!"

That was Joe talking earlier today while getting ready to cook two hot dogs on the grill. He was talking about packaging of hot dog rolls: They now come in packs of six, which makes sense because

hot dogs come in sixes. The rolls used to come eight to a package, which, he explained to me, meant that you had to cook 24 of each to make it all even out.

I love the idea of finding something that makes sense. Sometimes I still get stuck trying to figure out the "why me?" question. Why are people playing tennis, going to plays, eating dinner out, traveling, going to work and generally doing "normal" things and why did I get hit with a serious disease that keeps me from doing those things? If you go there, then of course you have to ask why are so many people worse off than I am – starving, abused, dying in senseless wars, dying from diseases and in general beaten down by any one of life's many misfortunes.

The reason things happen, or don't, is of course fodder for long philosophical discussions. There really aren't any clear answers.

So sometimes we have to find small things that make sense, like hot dog rolls that match up with hot dog packages.

Yesterday, after I had gotten nine vials of blood drawn in the Dana-Farber clinic, the technician asked the usual question: "Do you want coflex or a bandaid?" I chose the coflex, a self-adhesive wrap that comes in many bright colors. She carefully studied the rolls on the countertop and picked a beautiful purple.

"This matches your scarf," she said with a smile.

That made sense. Purple to match purple. I walked away smiling. I guess it doesn't take much.

As for the rest of my visit, the final results of my endoscopy came back. (Nurse practitioner) Melissa said it looked mostly normal, but there was evidence that I might have some mild Graft Versus Host Disease (GVHD). This is not always a bad thing when it's a mild case, but if it's super-serious, it can make you very sick or kill you. She said it could explain my stomach problems and nausea. Anyway, they don't want to give me steroids, the treatment if it gets serious, so they'll just watch it for now.

Platelets were 7, not great but not as bad as last week when they were 3. I was surprised that my hematocrit was down to 22, because I felt OK. White count was up to 5.2.

I got two bags of platelets and two bags of blood, basically closing the place down at 7:30. My driver Joe had to leave earlier, so my brother-in-law, David, kindly drove me back to Western Massachusetts.

I got home late, but at least I got to sleep in my own bed.

Now that's also something that makes sense.