With changing situations, adapting goals

With tennis friends at Hot Chocolate Run

I've decided that since 60 is the new 40, the 5K is my new 10K. At least for now.

It was great to be in a crowd of runners again — 6,500 of them — at Sunday's Hot Chocolate Run in Northampton. It was great to go with tennis friends and to support Safe Passage and to be in such a spirited scene at a time when the national news is so depressing.

As for the run itself, well...

Due to the problem with my toes, I hadn't run very much. And when I did run a little, it was on mostly flat ground around the Mount Holyoke lakes. But when it appeared that my new chiropractor had fixed my toes by working on (OK, killing) my calves, I decided I try it. But I didn't realize that the run through Smith College and Northampton had HILLS. They wouldn't have been hills to someone who has been running, but they were hills to me.

I leaned into them and did my best. I was so slow that I wasn't even sure if I was walking or running. At one point near the end as I passed two spectators, I asked, "Am I running?"

"Yes, you look good!"

They were nice.

Coming into the chute, I wasn't dying or anything, but I couldn't straighten up. During the walk through, I mentioned that to some women I thought I recognized. One of them asked if I wanted to go to the first aid station. No I didn't; I didn't go to first aid when I nearly fainted at the end of my infamous/famous Saint Patrick's 10K when I had leukemia in 2003 and didn't know it, so I wasn't going to do it on Sunday.

I picked up my purple hot chocolate mug and leaned against a tree. I wanted to see how the chip reader worked when you stand in front of it with your bib on, so I went over and tried it. It was a little over 50 minutes for three miles. About the time that at one point I could have run twice that much.

I shrugged it off because the point was to see if I could run without pain. I did, and that was the victory. Now maybe I can run more and get in shape for some other 5Ks. A friend from the tennis group said she would do it with me. I have to admit that the thought of another St. Pat's race did flash through my mind...

I went home and lay on the floor and stretched. Then I took a shower and went down to Bev Bloomberg's "Brunch and Buy," where I joked to people that I was eating as much food as though I had run a 10K.

In my dream that night, a group of us took turns lying on the ground and trying to catch the string of a pink balloon that someone down the field was shooting into the air. My turn came and I caught the string. It was a little difficult to see but I got it. I looked up into the sky and saw another pink balloon floating, then another and another. They were all disintegrating and falling down in little pieces. At first I thought that they were going to hurt me, but then I realized that they were light and wouldn't bother me and I would be OK.

I looked all this up but it is too complicated for me to put together.

Today and tomorrow I got to Boston for maintenance.

Today is photopheresis and tomorrow a checkup with Dr. Alyea at Dana-Farber.

A friend asked me if I ever went a whole week without a doctor's appointment. I said probably not.

Stranded... in my own house

I couldn't complain about the person driving me to Boston for my appointment yesterday because I never saw him. I waited in my usual spot looking out the window at my driveway and checked my phone to see if I had missed a call.

I called the company, Sonic Velocity (one of the good ones) but it went straight to voicemail. I called MART, which arranges these in-state rides for patients, and got put on hold while the call taker checked. She said the driver had left because he didn't see me. I said I never saw him. She said he was waiting at the foot of the driveway. I said we've been through this before. The first time this happened more than a year ago when a driver left without me I said it's a state highway and the door is on the driveway side. I said this company has been taking me for more than a year and they know that. She said it is a curb-to-curb pickup and they don't have to call me. It is only a courtesy and if I want it I have to request it. I said I did request it. She said there was nothing she could do but put me on standby, in which case I would need to wait an hour.

What would you like me to do, she asked. I started crying. If you can label a type of cry, I guess it was a combination anger and frustration. I hung up on her. I missed my appointment. Still crying, I called the Kraft Family Blood Donor Center. Diane, who books the ECP -- or photopheresis -- appointments, was very nice. I rebooked for today. I am going to drive myself.

So, OK, it's not life or death. I can do it today. I had arranged things so I could do it yesterday as planned and then had to rearrange them. But what if someone REALLY needed to go to an appointment the same day? They would be screwed.

I'm stoic (for the most part ) about the big things, but the annoyances like this get me all worked up.

People have asked why I don't just drive myself. Because it's a lot to do in one day, and you lose a little blood in the process, and I get tired. Depending on how I feel afterwards, I'm going to either sleep at Margaret's or come home. I have things to do tonight and tomorrow so I would rather come home.

I put a half humorous post on Facebook saying what had happened and asking if anyone wants to drive me to Boston and hang around for three hours while I get my blood sunburned.

My childhood friend from Atlantic Beach, Mike Kass, was the only one who responded. A new social worker said she didn't understand why I was hesitant to ask people for rides. I said because people are busy and it takes up a whole day and they have other things to to. I think it is probably like this for anyone who has been seriously ill: You are lucky to have friends to help you in the serious stage, and you have to understand that they are less likely to do it in the maintenance stage.

I think Mike would have driven me. But it's a long way from California.

When the needle hits a nerve

Yesterday started out on a good note with the tennis round robin but did not end up so well.

The ride in to Boston for photopheresis was fine. I had the Turkish owner of Sonic Velocity who dispatched loudly from his phone and watched the monitor in his car but I didn't care because he is polite (unlike Kenny) and efficient and gets me there on time.

It was downhill from there.

The needle started hurting almost from the beginning. I asked for a heat pad, which usually helps, but it didn't. I gave it a little time but at about the fourth cycle of pulling my blood out (there are six) I asked Ellen, the PA, if I could have an xycodone. She doesn't like to give it to me. I have been through this with her before and ended up in tears because I only ask for it when the pain is intense.  I try to explain that Melissa and Dr. Alyea prefer it for me, of course when used judiciously, as opposed to Tylenol (bad for my liver) and ibuprofin. I'm not sure exactly why they don't want me to take Advil and such but I just know that they don't.

Sometimes it doesn't hurt at all and I breeze right through it, watch a movie, talk to the nurses, read the paper, or fall asleep. Yesterday was not one of those good days.

Ellen said she would give me two extra strength Tylenol and come back in 20 minutes. In that period of time it started to hurt more. I said I needed something stronger and by this point I was writhing in pain and crying and thinking I might throw up. She said that there wasn't much time left (actually there was at least 45 minutes of hell) so it wouldn't make sense to give me the oxycodone because it wouldn't take effect until it was over.

 She agreed to give me some Ativan under my tongue to calm me down. Rosalie held my arm higher. It took the pressure off somewhat. They said it must have hit a nerve. I was never so relieved to have that needle out.

I fell asleep in the car and could barely keep my head up at home because they had given me a whole milligram of Ativan. This morning when I woke up and wrote Melissa I was crying.

Ellen is going to talk to her about going every three weeks instead of two because my veins might be getting tired. I said to please talk to Ellen and explain that I know what I'm doing when I ask for the stronger medicine. One of the nurses said to just bring my own and pop it without asking but another said that is going against protocol. I don't like to take it for no reason but I might just take it before the procedure next time to avoid the pain and suffering of yesterday.

Melissa said she was fine with either talking to Ellen or having me take my own prescription beforehand or during. I'm leaning towards just taking it before so I don't have to worry about it.

Adding and subtracting

Only at a dinner party where you've known the guests for a long time could you hold up your plate and exclaim, "I'm eating spinach salad!"

This happened last week when I ate spinach for the first time in six years. Not that I was craving spinach. I had to eliminate as many other iron rich foods as possible because of the ferritin overload that was sitting on my liver due all those blood transfusions I had.

I knew all the bad consequences of  high ferritin, which I believe was 7,000 or more (micrograms per liter), compared to a normal level of 11-307. I chipped away at this by getting therapeutic phlebotomies (having a pint of blood removed every couple of months) and dissolving five nauseating Exjade tablets in water most mornings, downing, and waiting half an hour to eat. The tablets bind to iron and remove it from the bloodstream. I took periodic breaks because it was so hard on my stomach. It was a big day a few months ago when I learned that I was "normal" and did not need to renew my prescription.

So, bring on the spinach!

Now, for the subtracting.

I have decreased from three Budesonide tablets a day to two because the glucosteroid has gotten my collagenous colitis under control. In a month, I will check back in with my GI doctor in a month and hopefully continue to taper.

Any day I take fewer pills is a good day.

Finally, I am now going only every other Wednesday to Boston for ECP, or extracorporeal photopheresis, the light treatment that has worked wonders on my skin...and improved my overall movement and tennis game. This is my week off.

I never thought I would say this when I learned in May that I had to do this, but in a (small) way I will miss it. Not the transportation or the big needle in my arm for three hours, but the cheerful, funny nurses and the friendly, always smiling, physician's assistant and doctor.

My nurse practitioner, Melissa, had told me that she sometimes goes over to the Kraft Family Blood Donor for a feel-good visit, and while at first I didn't understand why, now I totally get it.

That blood thing that I have been getting

When one of my friends approached me at our fun gathering last night and said she had a complaint about my blog, I thought I had done something wrong along the lines of libeling someone, maybe one of those crazy drivers.

But it turns out she had a constructive criticism: While sometimes I remember to link to the explanation of a medical procedure, such as the photopheresis, or ECP, that I have been getting at Dana-Farber since May, I also sometimes write the post quickly and neglect to do it. This website provides a good explanation:

Light treatment (ECP)

This is also known as extracorporeal photopheresis or light therapy. Photopheresis can improve skin, liver and mouth GVHD. 

Doctors normally give photopheresis after other treatment hasn’t worked or has stopped working. Photopheresis is a complicated process and it may take up to 6 months before you see any real improvement in symptoms.

To have the treatment your nurse will connect you to a machine by a drip. Your blood then goes through the machine, which separates off some of your white blood cells. You then have your blood, minus the white blood cells, given back into your vein. The separated white blood cells are treated with a special drug and then exposed to ultraviolet light. This light activates the drug so that it is able to destroy the abnormal white blood cells. After this process your nurse gives back the treated white blood cells into your vein.

Each treatment takes between 3 and 4 hours. Having this procedure does not hurt, but some people may feel a bit weak or dizzy during or after the treatment. After the treatment your skin and eyes may be more sensitive to sunlight for about 24 hours, so you need to protect yourself from the sun and wear sunglasses.

The Kraft Blood Donor Center (where I get the procedure done) is technically at Brigham and Women's Hospital, but I usually say Dana-Farber because I come through that building and it is halfway down the corridor connecting the two. Ellen, the PA, was not happy with all of the outdoor tennis I played this summer, and neither was Dr. Alyea, but I applied a ton of sunscreen, and, even on the hottest days, sometimes wore long sleeves. 

In the department of "learning more than I never wanted to know," I learned the the procedure was originally developed to give lymphoma patients radiation only to their blood without having to do it to their whole body, and then some genius researcher realized it works for graft vs. host disease of the skin. If you click on the link, you can read about how GVHD is a common side effect of an allogenic bone marrow transplant (a transplant using a donor's stem cells). It caused areas of my skin the thicken and harden, and my hands to swell, constricting my movement in a way that I did not totally realize until the procedure began to work, meaning the swelling went away and my skin softened, with the net benefit of helping me move better on the tennis court!

I hope to cut back in the near future to every other week. For some four months, I have been going every week, and for the three months before, twice a week. You don't get to ever totally stop because if you don't get the procedure periodically, the problem is likely to return.

During the times when I was dehydrated from diarrhea or from extreme sweating over the summer, my veins flattened out and they had trouble getting the big needle in. A few times I even got fluids before. I am going today and I hope I do OK in light of two factors that might cause some dehydration: the wine that I drank last night at our dinner, and the coffee that I plan to drink today at the tennis tea following the round robin.

I'll have to drink a lot (of water) on the way to Boston. I was going to drive myself straight from Longmeadow, but I decided to only spend a short time at the tea so I can come back and get a ride. Fingers crossed that the ride will be non eventful.

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.

When bad things lead to good outcomes

I had a lovely brunch yesterday with my friend Bev Bloomberg at Jake's in Northampton, where I reminisced about how Jim and I, when living in Florence, used to bring our newspapers down there.

When the conversation turned to seemingly bad events that had led to positive outcomes, I realized I had a new medical adventure that was turning out differently than I expected, namely the ECP, or photopheresis to treat my graft vs. host of the skin.

I was dismayed when I learned in May that I had to do this for two consecutive days for three hours at a time for 12 weeks and then one day a week for another three months (where I am now) and then  after that with decreasing frequency.

But in addition to improving my overall movement and my tennis game, it has led to meeting a new group of warm, funny, caring nurses and another great doctor, William Savage, medical director of the Kraft Family Blood Donor Center. He is so easy-going and friendly. The first time I was in there I was squirming in my chair with that big needle in my arm and couldn't believe I could last for three hours, but he said, "Just make yourself as bored as you can get, and the time will pass."

Actually (except for the matter of the big needle and keeping my arm straight), I can now say, although it is hard to believe, that it is pleasant to be there. The nurses fuss around, arranging your pillows, bringing a warm blanket, joking and sharing their stories. I mostly read the New York Times on my computer, or watch a little something on Netflix, or read a bit of a New Yorker or a few pages of a book. It's hard to turn pages with one hand. Most often, I fall asleep.

Dr. Savage is especially interested in the changes in my tennis game. First thing he says when he walks by is, "How is your tennis game"? I'm the only tennis player who has passed through there. I said maybe they'll do a study on me. I also told him that I'm moving better in yoga because my skin is less tight.

The other things that came up with Bev were:

#1 Bad thing: losing 12 teeth due to being immunosupressed for so long, with the positive outcome of one of the surgeons seeing a suspicious spot on my tongue and that spot turning out to be precancerous cells. I'm not saying it was fun to have a piece of my tongue scooped out – it hurt like hell for a long time afterwards – but that was the end of it, and I was saved from a worse outcome. I thought about this when beautiful Ann Gregory survived a blood cancer and a bone marrow transplant but succumbed to a squamous cell cancer that started undetected on her tongue.

#2 Bad thing: missing my cousin Nancy's 60th birthday bash in California due to double pneumonia that landed me at Brigham and Women's Hospital instead of on a plane going west. Positive outcome: a scan to find out the extent of the pneumonia led to the discovery of a small kidney lesion (euphemism for cancer) that otherwise would have gone undetected and most likely led to full-blown kidney cancer. A surgeon was able to remove a small section of my kidney. Not that it was fun to have that kidney resection surgery on Katie's birthday two years ago – and again, I remember standing in my kitchen crying hysterically because the pain medicine wasn't working and the doctor's office hadn't returned my calls – but now all I have is the scar and the memory of another narrow escape.

As I write this I can hardly believe this all happened to me.

But it did, and I just want to say, you just never know how things will turn out.

A funny thing happened on the tennis court

George and I were partners when we played doubles at the end of our clinic yesterday, and it was set point (us) with me on the ad side, and the ball floated a little out of my reach onto his side, and he said in his monotone (he never gets excited), "mine," but the ball called to me and I flew into the air and smashed it for a cross-court winner! Game, set, match. George seemed surprised.

Well, I didn't actually fly. Basically, it seemed like that because my feet left the ground a tiny tiny bit. George always tells me I should jump because I am tall and can get more balls than I think, but it's hard for me to do. In any case it was a good morning. The black tennis skirt that Ben, Meghan and Nell gave me for my birthday improved my game. Also, as I have said before, the photoperesis is helping my movement. I feel better in my own skin. Who knew?

People say I look better. I don't know exactly how to take that because it makes me wonder what I looked like before. But I'll take the compliment.

I behaved myself all week, just taking walks but chomping at the bit (an odd thing to say since I am not a horse but it works for the situation) and wanting do more. I did go to a "body sculpt" exercise class at the Y Tuesday night so I could get some exercise in my arms, being careful to modify.

I figured tennis was OK yesterday because the stitches were due out that afternoon. Char, our resident doctor, excellent tennis player and funny man (retired from Holyoke Medical Center), said, "Just run around, they'll fall out!"

I had brought nectarines to share at our break time; I didn't cut them before because that would have made them mushy. When I offered them to George he said, "Just spear it with your knife." I was careful not to stab myself.

Today I am driving myself into Boston. I canceled my ride and am going to spend the night in Newton and drive home tomorrow so as to not do the whole thing in one day (which would mean arriving home at 9 p.m. or so). Yes, the rides with MART save money. But they were also supposed to save on energy but have done the opposite in energy expended dealing with horrible drivers and passengers. I will probably try it again next week, though.

Of waterworks, Gatorade spills and a Cape escape

You may or may not have noticed that the blog has taken a break.

This is due to a series of technical and emotional difficulties that began last week when I watched Joe pack up to move out after four years of living at home.

It is ALL GOOD, and he is not going far, just to Fairfield County, and I knew it would come shortly after his master's graduation from UMass, but still watching it happen underlined what I already knew – that he has taken care of me as much as I have taken care of him, literally picking me up off the ground and going with me to the emergency room on multiple occasions.

The waterworks started with something that I can laugh about and cry about at the same time.

Me: "I just bought you your last bag of baby carrots," accompanied by tears.

Joe: "Mom, you can buy them for me again."

But once I started, it was hard to stop, and I didn't want him to see me, but he did, and we had a good conversation where we brought up the theme from the movie we had both just seen, "Inside Out," in which sadness must be accepted as a part of life.

It was well into the afternoon on this moving out day last week when I got a call from a man with an Indian accent who said that he was from Microsoft and he had information about my computer being hacked. He he said he could show me that it was being hacked in Australia and Morocco and I would need to buy a something from him to protect against these hackers. So I asked him his name and his telephone number and said I would call him back. I forget the whole number, but it was area code 302 something, and as soon as I put it in google I saw that it was a scam from various numbers in the 302 area code offering debt relief, anti-virus protection, and all sorts of other things...for a price.

(The comments that came up after I put the number in provided comic relief, such as one person reporting that he said to the caller, "Your mother would be ashamed of you," and another saying, "Maybe Donald Trump can stop these calls, because nobody else can.'")

Absorbed by this, and not paying attention to anything else, I knocked a bottle of Gatorade mixed with water onto my Macbook Air, ruining basically everything but the keyboard and frame.

Sunset on the bay

In a panic I called Apple and learned that the genius bar takes walk-ins on a first come, first served basis, so the next day I was the first one there at 10 a.m. The geniuses must also be trained in counseling, because the one who helped me said he sees it frequently, with people watering their plants over their computer or spilling coffee.

I left it there and signed off on paying an arm and a leg to get a new hard drive. Luckily I had all my important work on a flash drive.

The same day I met Katie in Boston after my photopheresis, and just seeing her brightened my mood.  From there we took off for four nights at the Cape, staying in a cute bed and breakfast in Eastham. The sun- and fun-filled days included the ocean and the bay, the pond and the bike path (three successful rides!), Provincetown dinner and stroll, and sunset at Sunken Meadow Beach, where the small group of spectators applaud as the globe sinks behind the horizon.

Then, alas, it was back home Monday to deal with the mess that I left behind in my whirlwind departure and to unpack the bags that I had accumulated over the mini-vacation and to get used to the Joe-less house.

That night I played in a match in Holyoke with the summer team I am on, the Paper Dolls. Despite the heat and humidity, it was great tennis.

You can't be sad all the time.

Cockamamie

The transportation stories get weirder and weirder while the photopheresis gets easier.

So the thing that would seem simpler – getting from one place to another – is more difficult than a complicated medical procedure.

Let's start with my ride from South Hadley to Boston yesterday. They scheduled the pickup at 1. The previous rides were at noon, which made more sense for getting through traffic to Dana-Farber by 3, but it wasn't up to me.

I went to George's clinic at 9: a great way to head into the two days of ECP because it made me tired and happy. I left early at 11:30 and stopped at the store to get a few things. About 12:15 I got a call from the driver saying he was 20 minutes away from my house. When I told him the ride wasn't scheduled until 1, he practically shouted at me: "I want to go to Boston! You mean I have to wait around?" I told him I would move as quickly as possible, and, remembering the first fiasco, I said, "You can't leave without me."

I got home before him, took a shower, and was ready at the originally scheduled time. When I went out to the driveway I saw the car but no driver. The other ones had helped me with my bags, but when I located this one I saw that he was smoking at the edge of my driveway. He didn't budge until I had gotten everything into the car myself. He went the slower way into Boston, through traffic on Route 9, complaining on the phone to someone saying he couldn't believe he had to take someone to Boston at this hour. Lovely.

Lovely, on the other hand, (I can hear Jim as my editor at the T-T making fun of that phrase: "On the other hand, I have five fingers," but it's my blog and I'm gonna use it) is a good word to describe my nurse. She made me as comfortable as could be, situating a pillow on my lap so I could rest my computer and my book on it, and getting me snacks that have become a routine: a package of mini Chips-Ahoy during the first part and Cheesitz and an apple juice towards the end. I thought I would read, but I fell asleep quickly and slept through almost the whole three hours. I told her I was surprised, and she said the machine does that to people.

Now we come to another little fiasco. When I had called The Ride on my way to Boston to confirm my cab ride to Margaret's, the operator said it wasn't scheduled. I was pretty sure I had scheduled it, but in any case I asked if he could put me in for a pickup at Dana-Farber at 6:30. With the same rationale as the last ride I had booked, he asked me what time I needed to be in Needham because he could only work backwards. I said I didn't care, it was just for going to a friend's house. This was unacceptable. I suppose I should have estimated the time it would take to get there, say, 45 minutes, so then he would be able to put me down for a pickup at the correct time. In any case it took a few go-rounds for him to get it. "You mean you want to be in Needham at 6:30?" No, and no, and no.

We finally settled on a pickup time at 6:30, but when I got outside there was no cab. So I called the dispatch number and the same man as before said that I was on standby because it was a same-day reservation. He said he couldn't guarantee a ride and I would have to sit there for an hour and someone might show up or not.

"You have to be kidding me! You didn't tell me that before!" I said. Too bad for me. These rides are often for people who are old or disabled. What if they were just left sitting?

Luckily Joe had put the Uber app on my phone. I put in for a ride, and a nice driver in a spotless Toyota arrived in six minutes. He took my bag and put it in the trunk. There is no meter, and I had no idea how much it would cost. I guessed $30, so I was pleasantly surprised when I got the receipt in my email and it was $24.05. The average cost of a cab ride would have been $45.

As I sat at the kitchen table telling Nick about this experience, I noticed the front page of The Globe had a story saying that Uber and Lyft drivers face $500 fines for driving without a license from the city. This is part of an ongoing battle with taxi cab drivers and cities against the popular ride-hailing services. Well, my ride certainly got me out of a bind.

With one more round to go today, I wonder what adventures await me.

Brain teasers

Due to long hold times for getting through to an operator with The Ride, I used the automated system to set up my "mini-rides" next week from Dana-Farber (450 Brookline Ave.), to Margaret's (945 South St. in Needham), not to be confused with the longer ride from South Hadley,  the troublemaker last time.

At first I was told that 945 South St. was an invalid address. So I tried again and got a message saying you cannot go to and from the same place.

I pressed zero and walked around with the phone on speaker while waiting to get a real person who didn't think two different addresses were the same. As often happens when you are on hold for a while, I was surprised when someone answered.

I asked to be picked up at 6:30 p.m. Monday at Dana-Farber after my photopheresis, driven to Margaret's, and then picked up at Margaret's at 6:15 a.m. to get back to Dana-Farber for the second round starting at 7.

"We can't schedule a ride before 7," the woman said.

I replied that it had been done last week, although then canceled because I had my own car.

"The earliest we can get you there is 7:15," she said.

She reconsidered, then put me on hole and came back with a different answer.

They could schedule me to be there at 7.

Question: "What time would they pick me up?"

Answer: "We can't tell you that because we can't schedule before 7. The driver will call you the night before to let you know the time."

This does not breed confidence.

However, I was happy to get through immediately to a real person when I called to confirm Monday's ride from South Hadley to Boston and book others. She was super nice and scheduled them through the first week of July. She then had to go for the day, but she said that she would call me back on Monday to finish up so that I would not have to be on hold forever.

Her name is Ramona. I need to follow up and put in a good word for her. Nobody has offered anything like that before.

I have stories to write, and I will get them done, but all of this scheduling is gobbling up chunks of time and energy.

This extends to figuring out when and where to see doctors, too. For example, I have gotten bounced around when trying to schedule an appointment with Dr. Liu, the dermatologist who is overseeing the ECP. She works out of three offices; one person tells me to call another person who tells me to call another person who asks me why I am calling.

I have had success in contacting my main dermatologist (yes, I have two) through email.

I just wrote her and Melissa asking for Dr. Liu's email so I can hopefully avoid all these phone calls.

The last line of that email was: Stress level rising.