On falling down and going forward

These things happened on Wednesday, which I started to write about but forgot to finish.

I woke up thinking about when or whether I would take the Exjade, and then I remembered that I am done. I still haven't gotten around to getting rid of the pills, and it occurred to me maybe I should keep an empty bottle as a remembrance of what I used to have to do on most mornings for some six years. A normal day without having to do it would be an extra special gift.

Then, I went to the round robin in Enfield. Unfortunately, as soon as I got back on hard courts, my big toe hurt again. But I had taken a little ibuprofen, even though I am not supposed to make a habit of it due to its effects on the kidneys. The play was great. At the end, when I was chasing a backhand, I slipped and fell. As I was lying on my back, I asked if I had made the shot. I guess you could say it was a "good fall," compared to some of my others when I hit my head and got badly injured. I had a scrape on my elbow, but I prevented a bruise on my hip from getting too bad because I sat on an ice pack on the way home.

Everyone looked at the smooth bottom of my shoes and said it was time for a new pair. When Karen looked at them up at the front desk, she reminded me that she had sold me a newer pair and I was wearing old ones. It took me a few minutes to remember the cute newer ones with the blue and green accents that my foot and orthotics guru Ken Holt had frowned on when I went to see him about my toe problem. "Just looking at those shoes makes my feet hurt," he said of those and the shoes I had been running in. I donated them to the Y and totally forgot to notice how worn out the tread was on my old pair.

I bought a new pair from Karen and will pop them on when I go to the clinic on Monday.

After tennis when I got picked up for my ride to Boston, I saw that there was another passenger in the car. I think that this company, Sonic Transportation, did not get the message that I am supposed to ride alone, but I wasn't going to make a stink about it. Although not upsetting like the woman who yelled at me, this passenger was disconcerting because she turned away from me and never said a word.

The ECP went smoothly until after the fifth cycle, when the needle started to hurt. I discussed with the nurses the possibility of doing five instead of six, and they thought that was a good idea because it doesn't make a big difference and my vein starts to complain during the sixth. Melissa gave the OK, so that's what we're going to do next week.

It was pouring when I got out. It turns out that the other woman had been finished at Mass General at around 4 and had to wait in the car with the driver until I got out at 7. This seemed like a bad situation for both of them. It poured all the way back. I talked to the driver a bit and he said he had just started, having previously worked two jobs at Rite Aid and Walmart, and he liked this better. Still, a day like that didn't seem so great to me. When we got to my house, I reached into my bag and pulled out a handful of dollar bills that I gave him.

At first he didn't want to take the tip, but I told him many of the other drivers have not been so nice and I felt sorry for the day that he had and he should buy himself a beer or whatever he needed. He said thanks and see you next time.

When I got home I could only have broth and a popsicle due to preparation for my colonoscopy the next day. The less said about that, the better, except that it was nice being driven by the super cheerful Joan Vohl Hamilton, who, afterwards, took me to her house and gave me a big container of warm, freshly made applesauce that was probably the best I ever had.

Missing Ann Gregory on her birthday

Many people feel strange, as I did today, when Facebook tells us to say Happy Birthday to a deceased person.

Today it was Ann Betts Gregory on what would have been her 44th birthday. I posted this morning that I missed her and her beautiful smile, and when I went just now to look at the page, I saw that the remembrances went on and on.

I imagine that it helped her husband, Chris, and the rest of her family, to see such an outpouring of love and heartbreak. Although Facebook has many downsides, it also offers a sense of community at these times. And something useful can come out of it.

One friend wrote, "Ann survived cancer twice because of anonymous bone marrow donors before other complications hastened her death. In her honor, please register with Be the Match, (formerly the National Bone Marrow Donor Program) you could really make someone's life."

As someone who became a friend through our blogs, I know that after those transplants she enjoyed precious time with her husband, her garden, her schoolwork, her kitties, her friends and more.

Most people do not know how simple it is to get on the registry. It only takes a tongue swab, either given at a donor drive or through a kit that you get through the mail by following directions on the site.

An outpouring similar to the one on Ann's page occurred Sept. 9 on what would have been the 72nd birthday of Bill Elliott, a beloved high school teacher of ours at Friends Seminary. His page now reads, "Remembering Bill Elliott."

This topic came up today when some of us were talking about how unnerving it can be to see these birthday notifications. If you go to the Facebook page and see the remembrances, it might change your mind. We wondered how you would change the status of the page.

I looked it up and saw that the Facebook Help Center has instructions on how to memorialize a page.

What to do with unused medication

People are worried after yesterday's post that I am going to flush my unused Exjade down the toilet.

I didn't really mean it. I meant it more symbolically, if that makes sense. Like, "I'm gonna wash that man right out of my hair."

Don't worry, they are still on my dining room table.

I am going to take them to the pharmacist.

A concerned friend sent this to me:

• A recent study shows that 80 percent of US streams contain small amounts of human medicines
• Sewage systems cannot remove these medicines from water that is released into lakes, rivers or oceans.
• Fish and other aquatic animals have shown adverse effects from medicines in the water.
• And, even very small amounts of medicine have been found in drinking water.

If anyone is wondering about this, the DEA has a whole fact sheet on it.

Victory!

Next up, I was going to write a post saying that when approaching the end of a race or tennis match or some other effort, you need to stay strong and not let up. I was going to give an example of the opposite  – when Donna and I had split sets with our opponents at the Districts in Providence and were ahead in the third 5 to 2, and then let up, and lost one game and then another...until we lost.

In subsequent matches, if one of us said "5-2," it was shorthand for "don't slack off."

I was thinking about this recently when eyeing my stock of Exjade (deferasirox) and thinking, as I have done most mornings for some six years, how much I did not want to take any more. But with my ferritin in the 800's the last time we checked, it was the home stretch, and I pushed myself to take it some more.

Five pills dissolved in water every day. Drink on an empty stomach. Feel queasy. Wait 30 minutes before eating. Even the reps who called from Express Scripts were annoying, repeating the instructions s-l-o-w-l-y.

In case you missed it: Exjade binds to iron and carries it out of the body. The price that Accredo charges – $8,114.90 per 30-day supply – is thankfully covered by my insurance. When I felt like skipping, I thought of the risks of the ferritin overload that had resulted from multiple transfusions.

If you are still with me, the point is this: Yesterday I got a call from the nurse practitioner who was covering for Melissa, who was not in the office. She said the prescription had come up for renewal and Dr. Alyea said I was done! I think my ferritin level was 742, close enough to normal and low enough that the small amount of blood loss during ECP will take care of it. I believe that when I started, it was around 8,000. Normal for women is 11 to 307 (nanograms per milliliter).

I psyched myself up on this homestretch for nothing. I guess psyching myself up most mornings for the past six years was enough.

Meanwhile, I have nearly $10,000 worth of pills left. You hate to waste something so valuable, but I'm afraid they are going to go down the toilet.

Bugged by pests

My boring, bland dinner

Today, I learned some things.

I learned that the yellow jackets flying around the street-side window in Katie's room are coming from a nest under the roof.

I learned that the cabinet moths that have been flying around my kitchen have a more official name  – Indian Meal Moths – and that the worms that I found in my food  most likely came into my house from the South Hadley Big Y, causing me to think I should go tell them about the money I spent replacing the food that I threw away. Maybe they'll give me a coupon for something.

An exterminator from Terminix told me these things after he went up to get rid of the yellow jackets and extend a bee pole up to take care of the nest. I wasn't happy about calling an exterminator, so I was pleasantly surprised when he told me that Terminix has switched to  environmentally friendly products. He left me a pheromone catcher to trap the rest of the nasty moths; I have been vacuuming them up and squishing them for a couple of weeks. Sweet success: One of them wandered in there shortly after I put it on the counter.

Last night I closed Katie's door and used a towel to cover the gap at the bottom, but not before one of the yellow jackets got out, causing me to stand in my PJs in the upstairs hall, brandishing an old New Yorker. It went into hiding, so I gave up and took Maddie into my room and closed the door and put a towel at the bottom. This took until about midnight.

Another bug is in the picture, and that is the bug, probably graft vs. host and colitis, bothering my stomach for more than two weeks. Nothing I eat seems to sit well. You can see from the photo what I had for dinner: rice and homemade applesauce. This is getting me down.

You would not expect to find the words "happy coincidence" and "appointment with  gastroenterologist" in the same sentence, but those phrases paired when Melissa said them to me after I told her on the phone that I have an appointment at Western Massachusetts Gastroenterology tomorrow morning to discuss my upcoming routine colonoscopy.

It has only been three days since I started taking the new medications, cipro and flagyl, and she said she and Dr. Alyea are on board with giving them more time to work as they did last time in addition to the steroid budesinide, which I have been taking since the first time this happened in June.

I'll be interested to hear what the doctor the has to say.

There's a first time for everything

For the first time in a some 12 years of going to Dana-Farber, I totally messed up on my appointments, going to Boston today thinking I was seeing two doctors when actually I was seeing none.

I think it started when I wanted to wear a certain pair of earrings that are my recent favorites but reached for a different pair that caught my eye first, thereby messing up my mojo.

Actually, I know how it happened. I had written on today's calendar that I was seeing Laura Goguen, the tongue doctor, at 9:45 a.m. At one point that was true, but they had rescheduled it for December and I had forgotten to cross out today's appointment. Then, for some reason, in my mind I had transported next week's appointment with Melissa to today, and yes, I write things down, but I had just spoken to her about our shared belief that it was today at 1, and it never got corrected.

So when the driver today arrived 15 minutes late, and we got stuck in traffic, I thought I would be late when actually I was early...by about two months.

I realized this when I went up to the 11th floor to head and neck oncology and tried to check in and they told me my appointment was in December. I asked if Dr. Goguen could see me today instead but she was already too booked.

I had better luck getting in to see Melissa. She sent down the orders for my blood work, I went and got it, and we had our appointment. She said I shouldn't be too hard on myself because once in 13 years isn't bad.

A man in the waiting room, who had heard me standing at the check-in window sounding flustered when I explained my mix-up, said not to worry, he had taken multiple wrong turns on the way in, even though he totally knows the way. A little solidarity in confusedness is a good thing.

I asked Melissa why she thought my stomach problems had returned, and she said that although it is not totally clear, it is probably a combination of Graft-vs-Host of the gut and a reactivation of the colitis that I previously had. Meanwhile, it is still new to me to have normal platelets, so when she said they were at 162, it was magic to my ears.

But first, I had done some other odd things, such as forgetting to check in at Lab Services and going directly to the waiting room, a problem which was only remedied when I asked at the desk how much longer I would need to wait and the staffer said (nicely, though), it would help if I checked in. The time was not wasted, however, because I met a nice white Standard poodle service dog, Freddy, and bonded with a woman who was on a new immunotherapy trial for her kidney cancer and was doing very well despite having been told more than a year ago she had three months to live and who told me, "Every day is a gift."

Even odder, when I went to try to get in to see Melissa, I went to the seventh floor instead of the eighth, which is the leukemia floor. But this mistake turned out to be providential because I practically walked right into my friend John Stifler. I knew he was bringing a friend to Dana-Farber for chemotherapy, but I didn't know where they would be.

It turned out to be perfect timing for them to bring me back to Western Massachusetts. So I got to cancel my ride and go back with friends.

This is a change of pace. Instead of writing about crazy drivers, I wrote about crazy me.

Sunday morning wanderings

I usually go to Maggie's spinning class Sunday mornings at the Holyoke Y. It is quite a wake-up call and energizing and fun. But it did not happen today, so, for a total change of pace, I went to an alignment-based yoga class at the Hampshire Regional YMCA.

Sometimes people don't realize that most Y members have reciprocity at other locations. These two Y's have different personalities, each with something different to offer. I have their schedules side-by-side on my desktop. The people at the Holyoke Y know me better and have been wonderful and instrumental in helping me get back on my feet and stay there.

Whenever I have a new yoga teacher, that teacher sees that my left hand will not flatten out. As happened today, the teacher comes over and asks if I can undo my claw. Well, if I could, I would. I don't really say that; I just explain that I assume it is arthritis, which I think I also have in my wrists, because I cannot make a 90-degree angle between my hands and my wrists. It probably hurts my down dog because I don't have a good foundation. This teacher suggested, as others have done, to roll up my yoga mat at the front for more support. Also, she brought me over a chair when she saw that I had trouble balancing. I appreciated that.

I am thinking of going back at 4:30 for Pilates. Looking at the schedules, I realized that I could spend a whole day going back and forth between Y's, but then I wouldn't get anything else accomplished.

On my way home, I stopped at Breezy Acres and almost had a full lunch while Evelyn gave me samples of almost everything in her case. At one point I had four plastic forks in my hand. I came home with enough food for dinner...chicken soup, baked beans, antipasto and a new supply of my favorite apples, Macouns. I said I vowed to make some good soups this winter, but my soups always taste so bland and watery because I don't have a sense of what to add. I guess I could read a recipe.

Vanessa James, an old acquaintance who is a professor of theater at Mount Holyoke, was there, and the three of us talked about politics. Her son has an interesting job working for Joe Biden. We talked about whether or not Joe will run, and we agreed that after Hillary's performance in the #DemDebate, it seems increasingly unlikely.

When she closes for the winter, I'm going to miss going over there to our little community gathering place. I told this to Evelyn, who is always so cheerful, and she said not to worry, she's going to be open for quite a while longer. Also, there is always Tailgate Picnic.

Holy cow, I'm glad I checked

I just started taking two prescriptions for the same gastrointestinal disorder I had about four months ago: metronidazole (flagyl), and ciprofloxacin. The combination worked the last time this happened, so I am hoping for the best. If it doesn't work, I might have to up the prednisone.

I hardly ever drink, but I am going out tonight and thought I might have one beer. It says on the flagyl bottle not to drink alcohol, but I didn't know if it just reduced the efficacy or if it was something worse.

I started to look up in google,  "What happens when you drink alcohol with metronidazole," and as soon as I got to the word "with," it filled the rest in for me. Obviously this question has been asked before.

I'm glad I checked.

All sorts of horrible things will happen.

According to Healthline, combining alcohol with this medicine can cause:

abdominal pain
cramps
nausea and vomiting
face redness
headaches

And, according to the Centers for Disease Control and Prevention, drinking alcohol within 24 hours of taking metronidazole increases your risk of side effects. Potential life-threatening side effects from this combination include blood pressure changes, rapid heart rate, and liver damage.

As for the other drug, cipro, it's hard to figure out when to take it. You take one tablet twice a day, with plenty of water.

It says on the label, "Do not take antacids, iron, vitamin/mineral supplements within 6 hours before or  2 hours after this medicine. It also says, "May cause dizziness" and "avoid prolonged or excessive exposure to sunlight while taking this medicine."

The latter presents a quandary. Next week is supposed to be nice, and Wednesday will probably be the last chance to go to George's clinic at the Canoe Club.

Should I stay or should I go?

Add two appointments, take away one

On Monday, I have a 9:45 a.m. check-up with the tongue doctor (more formally known as head and neck oncologist Laura Goguen), followed by a check-in at 1 with Melissa. It was in the back of my mind to try to move my Wednesday photopheresis to the same day at 3, but by the time I got around to it they were all booked.

They are very busy. It's not that much fun, but apparently it's popular.

Melissa said I could just skip the week's ECP rather than returning on Wednesday. I asked if the cumulative benefits go from week-to-week or more over an extended period of time, and since she said the latter, I'm not going to worry about it.

I only see Dr. Goguen once a year now. At my last visit I asked Dr. Alyea if I could skip those visits and just let him and my dentist take over, but he said, no, she can see things the other people can't. Both he and the dentist haven't seen anything suspicious, but when Dr. Goguen's office canceled an appointment that I had a couple of months ago – and couldn't reschedule until next week – I got a little concerned in light of what happened to Ann almost a year ago after she developed a squamous cell carcinoma on her tongue.

But since two doctors have seen it and said it looks fine, I'm not going to worry about that either. Besides, it's too nice outside.

I'm actually relieved that they couldn't tack on the ECP on Monday. It would have been a super-long day. I'm getting picked up at 7:45 a.m. and wouldn't be back until 9. It will be long enough as it is; I didn't book the ride back until 3 p.m. because I never know how long I'll have to wait for Melissa and Dr. Alyea. And I wouldn't want them to leave without me if I said 2 and then I was late.

Getting home at 5 will be a long enough day, but at least it will be light. Hopefully I won't have any stories to tell about my ride. But I wouldn't count on that.

One day, four sticks (in the arm)

8:52 p.m. Just walked into house from Boston, wondering if I should have Ativan or wine. Go for the Ativan, find something to eat, and sit down to write before I forget what I want to say.

Dueling phone conversations on the way home, my driver nice enough but talking loudly on handheld phone, thank you Greg Pearson for the pleasant conversation almost half of the way home.

Someone called in sick so the supervisor had to drive me this morning. To his right was a computer tracking the 16 cars in this fleet, in his hand was the phone on which he was fielding calls. I said I hoped he would be able to keep his eye on the road and he said, don't worry, he would, but with so many distractions who knows what would have happened.

On the way there as I read the New York Times in the back seat, we had a brief conversation about how most of the news these days is bad. He said he doesn't even listen to the news anymore. We talked about all of the shootings, and somehow we got on the topic of gun control, and he said, "I have a gun and they want to take it away." I had a word or two with him about this.

I talked to Melissa about going to Dana-Farber to get fluids before my procedure to avert the problems relating to dehydration that I had last time. I am still having as-yet undiagnosed stomach problems and waiting for test results. I called ahead to the Kraft Blood Donor Center to say I would be in at 4 instead of 3 and would therefore only have time for five cycles. The nurse I spoke to agreed.

While I was getting the fluids (and a flu shot), Melissa walked over. It is always so nice to see her. She said the first part of my test, the one that was the most concerning, came back negative. She went back to work and I dozed off and woke up with a shock when she said something to me. It was that the people at ECP didn't want to see me at all because I wouldn't be there very long. Melissa and the nurse who was giving me fluids told me they thought that was ridiculous, I would still be there for two hours, and I hadn't come all this way just to turn around and go home. They made their point to the people at the other end, and Melissa walked me over.

Pat, my nurse for the day over there, got the big needle in my left arm, but it must have hit scar tissue because it didn't work. She switched to the right arm and I was relieved to see the blood coming out. They only did three cycles, but apparently even a little does some good.

In the morning, five of us went to tennis at the Canoe Club. It was warm for a while but then got cooler as the breeze picked up and made the ball do crazy things. We had our usual good time, but I got hit with a ball four times. George says it is your own fault for getting hit because you need to get out of the way. That was the case with three, but the fourth was a case of somebody just hitting the ball onto my court. But I made up for it by hitting the ball off two cones and catching a ball in the neck of my racquet, earning me the chance to make a wish.

Of pests in the house and pain in the arm

I wondered if it was a bad omen that on Wednesday I woke up with a stink bug in my hair. Maybe it was, maybe it wasn't, but after tennis, it was downhill all the way.

At ECP, the needle wasn't drawing well, so my nurse had to move it to another vein. While she was doing this, the other one started bleeding. The new one hurt almost immediately. At this point I saw that Melissa had just emailed me to check in, and I wrote her with my free right hand that I wondered if she could get me an oxycodone. She called over but they said they had to find the doctor on call. By the time the five milligrams appeared, tears poured down my face. It wasn't enough, and when they tracked him down again he said he was off service and he would have to page the one who was on service. By the time the next 5 mgs arrived, I was almost done, and it just started to kick in at the end.

This only happened one other time. One of the nurses said to just bring my own oxycodone, but another said I couldn't do that, so I didn't. Except for a few problems, it has mostly gone smoothly. I don't understand why with everything supposedly so streamlined with the new EPIC system, your main caregiver (Melissa) can't just give the OK to get you what you need. It is on my chart.

After the episode in which the other passenger bullied the driver into stopping at a drugstore (against the rules) and then yelled at me for protesting, my doctor put in a request for me to ride alone. But there was another passenger with me in the car going back. She had some kind of mental illness...on the spectrum I think are the words. She talked almost non-stop about her medical problems and whatever seemed to come into her head. When we got near my house I asked her to stop talking so the driver could find my house.

Arriving home around 9 p.m. with a headache, I was greeted by pantry moths dive-bombing me. I had seen them the day before and traced them to a few meal worms in my rice. Feeling bad about the waste, I threw almost everything out. I thought maybe it was because I had kept some rice too long, but then I looked it up and saw that they come in with the food that you have bought. Some people are so freaked out by this that they freeze everything before putting it away.

I put the remaining cereal and rice in the refrigerator. I saw one in the dog food and put it in the garage. As of last night, some were still flying around. I swatted at them with a dish towel and squished a few onto the wall, leaving a smudge that I then had to clean. I vacuumed the cracks of the cabinet and then sucked up a couple that were on the ceiling.

As of this morning, the coast was clear.

Have an A-1 day!

Magic in Minneapolis

Stillwater selfie

The trip to Minnesota has been fabulous, full of the expected good things (spending time with Katie) and the unexpected interesting ones, and now that Katie has gone to school and I have time to kill before my afternoon flight, I have time to write a little about it.

First of all, I am so in love with the Minneapolis area that I could stay another week. There is water, water, everywhere, and so many places to see it. We went around Lake Harriet and walked along the Mississippi near the Guthrie Theater and also along the St. Croix River in our day trip to Stillwater, the birthplace of Minnesota, where we spent a good part of the afternoon taking a trolley tour of the fantastic homes and browsing in the stores and at stalls in an arts fair while a jazz concert took place, which we would not have done if our hosts, Lonny and Andy, had not had a book called "100 Things to do in the Twin Cities Before You Die."  For exercise, we climbed up a lot of steep stairs to get this view of Stillwater.

View of Stillwater

This was my best Airbnb ever, a historic house, recently on a home tour, filled with art and antiques, with two cute little dogs, and a modern kitchen that makes me want everything in it, and a bed so comfortable that, thanks to the comfort and the cool Midwest air, allowed me to sleep past that dreaded 4 a.m. hour and sleep until the more respectable 7 a.m.

A semi-retired couple had the other room. They had driven over from Dubuque, Iowa, just to explore the area, and we became instant friends. In talking to the couple, and to Lonny, one of the hosts, we discovered a big commonality in addition to our shared political values: three of us had had cancer. We played "can you top this," and I am happy to say that I have enough distance to be able to do it with a sense of humor, as the others were able to do also.

They gave me the prize, but after hearing the other stories, I said I wasn't sure.

Last night, I stayed up until midnight talking to Lonny about his large extended modern family, and by the time we were done, I wanted to move in...or at least come back in May for the Heart of the Beast Puppet and Mask Theatre Annual May Day Parade.

But, back to my regular reality, which is a little complicated.

I fly in to Boston tonight, sleep at Diane and David's, then head out early in the morning to get to at least part of the Tuesday class at The Literacy Project in Northampton, then do some writing, then hopefully get in another outside clinic in the waning days of our Wednesdays at The Canoe Club, then go home to get picked up to go back to Boston for my ECP at the Kraft Blood Donor Center.

You might wonder, why not stay in Boston, but then I would not get to do those other things. And also, it will be nice to see my dog...if I can tear her away from Jim and Jane's.

Up, up and away

In my dream, Dr. Alyea said that although I felt fine, I was not making enough blood and would need another transplant. He said I would need chemotherapy and a hospitalization all over again. I just could not believe it.

This time I would need to go to California. I said that it would be too far for most people to come visit, although I knew that at least my California cousins would. He said not to worry because they have a gym out there, and he showed me a video of bald people playing basketball.

So although I was filled with dread, I felt better knowing that I could exercise.

In reality, I was sleeping on the third floor of Diane and David's house in Newton, in preparation for my flight from Logan Airport to Minneapolis today. I'm going to stay for four nights at what looks like another great Airbnb that we picked by looking at the map and checking out places near Katie's house.

I'm excited to see her new house, ride bikes (it's flat!), walk around a lake or two, eat out and do other fun things. I also brought some work to do and the book, The Lowland, that we are reading for bookclub.

Yesterday in the pouring rain was a wash. It was one of the only times all summer that we were rained out of our Wednesday clinic, meaning that it will be the first time all summer that I will have a week without tennis! I still hadn't finished cleaning up after having tennis friends over for brunch on Sunday; the cleanup took a while as I suffered the consequences of taking all my piles of paper and other stuff and throwing them into a closet and then having to deal with it when it all spilled out.

Also I did an interview for a story I am writing. And being the world's slowest packer, by the time I got out of the house it was getting dark. For a minute I thought of staying at home and going straight to the airport for my 11:45 a.m. flight today, but then I would have been lollygagging under pressure and that would have been worse.

Diane was so nice to drive me to the airport in my car that I told her she could use any of my stuff: dog leash, tennis balls, tennis racquet, yoga mat, books, natural energy drink, coffee nips and any of the other inventory.