Thursday, May 26, 2016

Appreciating smell of freshly mown grass

Breathing in the smell of fresh-cut grass, which I did just now, makes me appreciate the smell that I had to avoid for so much time after transplant. I might have overdone it but when taking a walk I would keep a mask handy and put it on or even hold my breath when walking where someone was mowing.

I also took a wide berth around any construction sites or areas where dirt was turned up. Gardening was especially bad, and although nobody knows for sure where I got the aspergillosis that required lung surgery before my first transplant, it could have been from pulling a weed out of the garden without giving it much thought.

The Cleveland Clinic explains, Avoid gardening, mulching, raking, mowing, farming, or direct contact with soil and plants. Creating plant or soil aerosols increases exposure to potential pathogens (substances that can cause disease) including aspergillus and cryptococcus. This does not mean you should avoid the outdoors. Walking, biking, and many other outdoor activities are not only enjoyable, but will promote good health.

Some of the restrictions listed are for 30 days post transplant, but I remember this being a rule for much longer, especially on subsequent transplants

My doctor told me during my first rounds of chemotherapy in preparing for transplant, "If you get sick it will really set us back." Well, it did set us back, so I was super careful after that.

I'm not one of those people who says that cancer makes them appreciate every day so much more than before. IT IS NOT A GIFT. I'm still my same old self. But I'm grateful for the many times like this when I'm reminded of all the things I can do that I couldn't do before.

I wish I hadn't looked this up but I did and now I have to tell you that the smell is actually a distress signal that the grass sends out after being wounded.

Still, it is reminiscent of spring and summer and so we can embrace that part of it.

Wednesday, May 25, 2016

Back from writers conference, head full of ideas

With my mentor, Theresa Sullivan Barger
Back from my first time at the American Association of Journalists and Authors writers conference in New York, I realize that I'm as bad at unpacking as I am at packing.

It's an extenuating circumstance because my kitchen table is a mess of business cards and papers and my head is brimming with ideas. I went to three sessions and wish I could have been two places at the same time but since I couldn't, I'm ordering a recording. As a freelancer I miss the camaraderie of the newspaper, and being around all these interesting editors and writers had the same feel.

I attended three sessions: "Conference Success Stories: Making Great Connections Here," "Freelance Forever: Keeping Secure and Prosperous Later in Your Career," and "Pitch Slam: Women's Magazines," where writers took turns pitching to the editors of Women's Health, Family Circle and Manifest (and having our ideas critiqued). Everyone is on Twitter and I'm just catching up but I had fun Tweeting my impressions. Like so:

With Randy Dotinga, ASJA president
Advice from at : "Don't lose your sense of wonder."

Ronni Gordon ‏@ronni_gordon May 22 Manhattan, NY 
Told younger person at #ASJA2016 that I was sad I lost my newspaper job & she said be glad you got to do it.

Meanwhile I also did some great networking. Interestingly, the first person I sat next to was a former reporter from the Hartford Courant who credited my former husband with teaching her how to be a business writer. I said that back at the old Transcript-Telegram,  he also taught me how to be a good reporter.  Longtime freelancers had volunteered to be mentors, and she ended up mentoring me and giving me some great advice. Two degrees of separation!

Somehow over informal dinners I ended up in the memoir writing group. I just landed there because I found an extra chair. I said I actually had written a memoir and even had an agent but it didn't go very far. I had thought it was relevant to the stem cell debate and that I had a pretty good story to tell. They asked if I would revisit it and I said no because after reading some memoirs I realized that mine was lacking in the detail that brought others to life. This was because for a lot of the time I was out of it.

I was hanging out at the bar (not drinking but eating an orange that the bartender gave me because the pizza that I had for dinner made me so thirsty) when a woman came over and asked me for my card. She wanted to thank me for asking so many good questions in the sessions because she had been reluctant to do it herself.

I told her that I had been shy growing up and then chose a career that made me extend myself. It's because all I wanted to do was write, and to write the stories I had to ask questions. I also said that my daughter finds it hard to believe I was ever an introvert. I told them that she says, "Now you never stop talking."

Via Twitter I learned that I needed to prepare my "elevator pitch," summarizing what I do. I came up with, "from being at a daily newspaper I would say I'm a generalist but I specialize in arts and health and fitness."

Being so "on" and not sleeping much took its toll at the other end. Between Sunday and yesterday, I had several mini meltdowns where I started to cry over something that happened, and in repeating the story, cried again. Twice. In my mindfulness course at The Cancer Connection, the instructor said that it's good to cry and that pushing our feelings down is not a good thing. Still I would rather have not had it happen.

In addition to the mess of cards and other things, the chi of my kitchen, one of my favorite rooms, has been disrupted by bursts of dive bombing pantry moths. I took everything out of the pantry closet and either put it in the fridge, threw it out, or piled it on the counter. I have done everything that is recommended. An exterminator came over and said I should empty out every cabinet and he would charge me $300 to use a pesticide to get rid of all the eggs that I can't see. Which I'm not going to do. I can't see their eyes but I feel like they are just gloating at me.

One mistake I made was to put the pherome trap on the counter. I have now placed it in the cabinet and closed the door. A friend said that's what his father did and they finally died and stopped reproducing.

I'm going to my second outdoor clinic at the Canoe Club and I'm sure it will at least temporarily wash everything out of my mind. Last week I had a brief talk with one of the other players where we both agreed that there is nothing like it for getting all your anxiety to go away at least for the period while you're there.

Then it's off to Boston and back to every other week instead of every three weeks of ECP, or light therapy on my blood.

Thursday, May 19, 2016

Mourning loss of another friend made through social media

In today's world where you make friends through social media based on your interests and, as is the case with some of us, on your illness, you're going to lose people to disease and feel like you knew the person even though you never met.

Such was the case with Ann Gregory. It was slightly different with PJ because although I met her through our blogs, we became friends in real life.

We shared a disease, but you don't have to have the same cancer to have a connection.

I bring this up because of Jody Schoger, the breast cancer advocate who died yesterday. I knew she had gone into hospice after her last treatment failed, and I realized we hadn't heard from her on Facebook in a while. But still I was surprised, and incredibly saddened, when I saw the first tribute yesterday. Since then they have been flowing in.

RIP, Jody Schoger. You made this world a better place. Thank you for sharing your cancer journey with others.
We're so sad to hear of the passing of Jody Schoger, , who united so many affected by thru the community.
Healthcare social media pioneer Jody Schoger has died but she continues to inspire so many

She described her metastatic breast cancer recurrence on Oct 23, 2013 after 15 years of remission in this post that she wrote for Houston's MD Anderson Cancer Center, where she was treated.

"Cancer is wily. Invasive lobular breast cancer is especially so. It doesn't always cause lumps and can be difficult to image. The cancer skipped my remaining breast for better territory, landing in the opposite lymph nodes under my arm, then traveling up into my neck before traveling into my abdomen. For me, acceptance comes in moments. It isn't a steady state, but a series of overlapping realizations where each one is deeper than the last. I've yet to find a workable metaphor for incurable cancer. Cancer isn't my last stand, nor is it a battle with a winner and a loser."

Along with breast cancer survivor Alicia Staley, she formed the Breast Cancer Social Media Community (#BSCM), which included advocacy, education, a blog, and a tweet chat. Alicia wrote a beautiful blog post, Good Night, Jody, that explains it all.  Jody was optimistic, determined, funny wise, a wonderful writer, beautiful, and, where needed, combative.

In early November, she tweeted: BC/BS of Texas to M.D. Anderson patients: Drop dead. This was because the insurer was eliminating coverage for some 2,000 patients like herself as of the end of the year. I thought it was a developing national story which seemed like an effort to cut off patients with pre-existing conditions, and I emailed back and forth with her when trying (unsuccessfully) through a connection to get the Boston Globe's new Stat team interested.

At the time she was also having heart problems. "The dismay is like a big rock in my stomach," she wrote me. She ended up getting other coverage but what a thing to go through at a time like that. We exchanged quite a few emails so I felt like I had a personal connection with her. As did many others.

Sunday, May 15, 2016

Riding in cars, tracking down doctors

When we left off, I was frustrated and annoyed. I had finally secured a dermatology appointment but the car service that was going to take me canceled and I was unsure whether I could even get to Boston. Well the driver who came was one of the more interesting ones in a good sort of way. Proof that it doesn't pay to get worked up because you never know what the outcome will be. Easy to say in hindsight, though.

He had lived in Florida but moved to Springfield at his brother's urging and was sorry he did. He couldn't find work as a heating and cooling technician so that's why he is driving. When we started chatting about how we ended up where we each were, I said I had moved here for a job at an old paper in Holyoke.

"Oh, the Transcript-Telegram," he said. Turns out his brother had been a delivery boy and sent him copies of stories from my old paper. When I said I grew up in Manhattan, he said, "Oh the Flower Garden." That was strange because it is right across the street from our apartment and is a place that my mother loved to paint. You can make connections in some of the most unexpected places.

I told him how nice he was and that I had not had many like him. He said he knows all about some of the drivers and also said the dispatchers and owners can be the worst, not caring how long they make patients wait.

I don't think he realized that he was philosophizing, but when we got close to Boston and he saw that there was traffic along the route, he did some maneuver that I couldn't replicate because he did it so fast. I thought what he said applied to life in general and to anyone in a tight spot, or to me on the way to Dana-Farber, so I tweeted what he said.


On the way back the driver was also interesting – a UMass history graduate who couldn't find a good teaching job and was driving instead. But I think I'll have to report the company, which kept me waiting for two hours. The driver said he had told them that he couldn't get me on time because a truck had caught on fire in the O'Neill Tunnel and traffic was backed up for miles. He even sent them a picture.

They had enough drivers but basically didn't care. They are supposed to call with updates about delays, but they never did. Every time I called, the dispatcher said he would be there in 5 or 10 minutes. My appointment with the dermatologist was only about half an hour, but the day was draining due to all that waiting around.

I had recently noticed that Francisco Marty, the infectious disease doctor who always made me smile no matter how sick I was, had started a Twitter account. So when I walked in the door, I sent this:

I'm , checkup w/Melissa after blood draw & internal sunburn at 3!

The first time he asked me how the internal sunburn was going, I didn't know what that meant, but I came to understand he was referring to the light therapy, or the ECP, that is treating my GVHD of the skin.

Melissa Cochran, moi, & Francisco Marty
When I went up to the eighth floor for my appointment, he was there with a big grin on his face. He held the camera for this selfie. Then I went in for my appointment. Everything was fine except that I pointed out that my hands had gotten swollen again and my skin on my thighs and my stomach was funky again with a dimply appearance and hardening of the skin.

It seems like I wasn't ready to go to every three weeks. So I'm going back to two. I pre-medicated again with oxycodone on Wednesday, but I'm not going to make a habit of it. I'll tell Ellen or take it myself if it starts to hurt at the 4th cycle (out of 6).

On Thursday I woke up with a bad headache. The same thing happened the last time I took it.  I looked it up and this narcotic headache  commonly occurs when people take opiods too frequently. Actually when I took them frequently in the hospital I don't remember getting a headache but now when I hardly ever take them I do.

The spot on my face that I was worrying about turned out to be not much of anything But it is a good thing that I went because the doctor, Stephanie Liu, is the one who originally recommended the ECP. She confirmed that I need to return to every other week. She froze the spot on my face and as usual, zapped away at other spots on my neck and my hands

Wednesday, May 11, 2016

Frustrated and annoyed

Sometimes you can be chugging along dealing with the larger things and then a little thing can get to you.

For example, yesterday I was frustrated to the point of tears in trying to get a dermatology appointment tomorrow after my checkup and ECP today. I started working on it Friday and by yesterday had still not heard back from the nurse who was going to see if someone could look at a spot that worries me. The practice manager who always took care of me had left and there didn't seem to be anyone in charge.

It was a microcosm of the confusion that can result when you hear different things from different doctors. It was REALLY upsetting when it happened in the hospital when something serious was going on. Not so much now, but still.

Ellen, the PA at ECP,  said she didn't like the look of a spot on my face.
The dermatologist who did my most recent Mohs surgery said not to worry, it would come off in the PDT that I got a few weeks ago. It did not come off, although the rest of my skin peeled.

 I called the office and learned there were no openings. Then the nurse called back and said a doctor would see me Friday. Then I wrote Dr. Linn and said I was incredibly frustrated and she said she was so sorry and got me an appointment for tomorrow.

I arranged to stay over at Diane and David's and called MART (transportation) this morning to say I would only be going one way today and would be coming back tomorrow.

The vendor then canceled the trip. Apparently they have the right to do that because it is not worth their while to go one way. The call taker said I might not be able to get to my appointment on time but she would put me on the "same day" list and try.

Then I looked up what Dr. Lin said she thinks it is – a seborrheic keratosis – which she said would not be expected to come off with the PDT. It looks like it's not even harmful. But she still got me the appointment, just in case, I guess, and now I have changed everything around and am not even sure I can get there. Unless I drive, which I really don't want to do.

Monday, May 9, 2016

Mother's Day musings on good things, bad endings

I had a great Mother's Day with Ben and Joe here and Katie who Facetimed just as we were finishing our walk with Maddie around the lake when the sun finally came out.

I had told them about my encounter with that horrible George the goose the other day and wanted to show them but he was for a change placidly hanging out on the lower lake. I haven't mapped my run in a long time because I haven't been running enough but just out of curiosity I did it and saw that I went 2.86 miles without any pain in my toe.

I did it Saturday because I had been sitting almost the whole day in the second day of the professional development course I took on the art of teaching adults. I am on the substitute lists of several organizations and would like to have background on what I'm doing when I'm called, which has only been a few times because these teachers hardly ever take time off.

I thought back to what I would have done in the past after sitting for a while and it was always go for a run. Since the training was in Holyoke I thought of going straight to the Y to go for a swim but it is my least favorite thing to do. So I put on my new Hoka Ones and was happy with the outcome. Though yesterday I felt pretty stiff.

My Mother's Day came to a sad end with the "Good Wife" finale. It is only a TV series of course but when you have watched something for seven years the characters do seem real, as fans can attest when we grieved over Will's death. Thanks to Joe teaching me I discovered how to follow an event on Twitter and discussed it in real time with people who were getting as upset as I was. That and texting with "real life" friends who were watching it. Then as I tend to do I stayed up late and read the postmortems. We were all glad to see Josh Charles come back but we wanted a better ending. Someone tweeted couldn't it have been a little more like the "Downton Abbey" finale and someone else asked which was worse, the ending to "The Sopranos" or this. The creators, Michelle and Robert King, said the ending was in keeping with the series: ambiguous. Boo.

A beautiful photo that Katie shared yesterday of the two of us in the apartment where I grew up made me smile but also made me miss my parents and that place so much.

I had an instructive dream about it, though.

I was at a rally where the speaker was a young woman who held up a smiley face. She held it upside down to show a frown. Then she held it the other way to show a smile and said all you have to do is change your frown to a smile and you'll feel better.

Then I was in a therapy session and told the therapist that I was so sad that I couldn't go back in time and have my parents. He said to just change the frown into a smile and you'll feel better. So I did.

Saturday, May 7, 2016

What, me stress?

How many of you have a good side and a bad side of your mouth?

Probably not that many. I haven't talked about my teeth for a while, so, to recap (ouch, a pun), I will remind you that I lost 12 teeth, which obviously leaves me with 20. I don't have good contact on my right side, where I did not get a bridge, but I do have it on my left side. Getting the bridge there was a happy day because before I got it I could basically only eat mush.

Last week a piece chipped off a tooth on my left side, making it hard to chew, so now I am back to having two bad sides. I made an an appointment for Tuesday, which is as soon as I can get it, at which point my dentist is going to chastise me because I did not make the mouth guard he recommended getting from CVS.

He said the tops of my teeth are jagged because I have been grinding them.  I looked up the reasons for bruxism and they can include stress and anxiety. I don't know what I have to stress about. He wants me to wear the store-bought one to get in the habit and then he'll make me the expensive kind. But they're not covered by insurance and he doesn't want me to waste my money if I'm not going to wear it. I think I'll do it tomorrow.

Another small but bothersome thing is the spot on my face that the face burn from a few weeks ago did not get. Ellen, the physician's assistant, said she didn't like the look of it: raised and flakey like the squamous cell cancers I have had had. Dr. Lin said not to worry because the PDT would take care of it. My skin has peeled nicely but the spot is still there. It needs to be looked at.

Since I'm going this Wednesday for my blood thing and a checkup with Melissa, I called the dermatology office to see if I could pop in on Thursday. I called too late on Friday to get the message to Dr. Lin.The nurse said she would probably not get back to me until Tuesday. I said I needed to arrange for rides and asked if I could find out on Monday. She said probably not.

Jennifer (Dr. Lin) had given me her personal email a while back and told me to use it if I have a question. She likes to see photos, so with some difficulty I took a picture of the spot, which is on my left jawline near my ear. I emailed her and asked if someone could look at it next week.

In the subject line I wrote, Sorry to bother you at home....

She hasn't written back.

Hopefully it just needs to be frozen. It would be nice to know by Monday whether I can see someone so that I can arrange my rides accordingly. But mostly I hope it is not another squamous cell just sitting there.