Please let me tell you about my feet

From Our Neuropathy Friends Facebook page

First of all, I'll say straight out that nobody wants to hear about your feet (or mine) unless they suffer from the same condition.

For example, if someone asks how you are, and you say, "My feet are killing me!" you're probably not going to get a good response if their feet are fine. If you say that your plantar fasciitis is acting up, and they've had the same infuriating ailment, you could probably talk for a long time. Similarly, if you say your neuropathy is driving you crazy and you're talking to a fellow sufferer, you'll be good to go. If not it is just not going to sound that interesting, or that believable for that matter, to try to explain to someone that your feet can be numb and painful at the same time, that you feel like you're walking on rough sand, or on little nails, or that your feet have an electric current in them. Or that, tantalizingly, it will get better but then it will sneak up on you again. 

The 4,325 members of the Facebook group Our Neuropathy Friends know what it's all about. I don't post much, but I did the other day, and I got some helpful advice, and support, which is also important. Of course the remedies are all over the place because each person's experience is individual. Some have found relief from CBD. I've also checked in to a group called CBD Oil Users, with 161,860 members. 

I take1,500 milligrams of gabapentin (Neurontin) daily. It takes the edge off, but the results are not great, because there always is, at minimum, a buzz. I get acupuncture and have been using some CBD. (Short for Cannabidiol, CBD is the non-psychoactive component of the cannabis plant, not the part that gets you high, tetrahydrocannabinol (THC). 

Sometimes I think it's helping, other times, I think not. I'm encouraged, though, because studies have shown that cannabinoids can alleviate neuropathic pain. I recently met some people who are happy with its benefits for themselves and for their dogs. In case you haven't noticed, you can get CBD all over the place, even in the mall. Where I'm getting it, and how I'm using it, is material for another post.

With the latest flareups, I decided it was time to check in Dr. Ugonma  Chukwueke, (pronounced Chew-kwe-kee) the Dana-Farber neurologist I saw a couple of years ago. I left a message and was supposed to get a call back but didn't. Melissa nudged. I got a call back from a scheduler who said Dr. Chukwueke is not the person for me. Neuropathy like mine, resulting from chemotherapy, is not her expertise. She specializes in neuro-oncology, or neurologic complications of cancer, for people who have cancer, not people who have chronic conditions resulting from treatment. I wondered then, why I got sent to her in the first place. (Picture eye roll.)

In any case, I now have an appointment for next Friday. It's at 9:30 a.m., which is not so great. But the doctor, David Pilgrim, sounds great. He has excellent patient reviews and the impressive title of chief, clinical neurology, Brigham and Women's Faulkner Hospital, and instructor, Harvard Medical School.

 In addition to discussing alternative treatments, I'll bring up the possibility of switching to Lyrica (pregabalin.) As I wrote in this story, both gapabentin and pregabalin have side effects. I don't think I'm taking the highest dose of gabapentin, but I've been afraid to take too much more, for the reasons the patients discuss in the story.

Fingernails, toenails, have stories to tell

This morning, when doing my nails, I thought about how my fingernails have stayed strong while the rest of me was falling apart. People have noticed. One of my healthcare providers pointed it out during cancer treatment.

I don't know why they're strong. I don't mess with them much...except when I occasionally go crazy and pull the skin off the side of a fingernail or tug on a dangling cuticle. As for the nails themselves, maybe, like a plant that is not overwatered, they are happy with benign neglect. I let them get a little too long, notice they don't look so great, cut off the tops, and file them into a curved shape.

When I did them, I had a flashback to when I was so weak that I couldn't do them. That was during my three and a half month residence in Brigham and Women's Hospital after my fourth bone marrow transplant. Diane did them for me. She knew that I liked them curved. She knew a lot of things.

Only occasionally do I get a manicure. The longer lasting gels don't seem to me to be good for your nails, plus you have to return to get the gel off, and the regular polish wears off so quickly.

When I go out to the garden with gloves on, I somehow end up with them off. The underside of my fingernails looks gross. The late Jean O'Connell, who when I knew her was the food writer at the Union-News, had a thing or two to say about dirty nails. They showed the type of person a person was. Also, their shoes.

I'll never be a hand model. I'm not happy about the way that little skin cancers and pre-cancers have messed my hands up. But my nails have not let me down.

Pedicures are welcome but not a regular indulgence. At one of our local places, they said that if you run around a lot, like I do, you should get them as part of good foot care. Maybe. Sometimes I do my own toes. I'm not bad at it. And I can even reach.  I do this more often than not, because of the money, or I keep the nail polish on so long that it is a half moon on the top of the nail.

But the whole pedicure experience is pretty relaxing. I'm half proud and half embarrassed about my partially blackened right big toenail. It definitely looks better when covered up. It got damaged during the 10-mile run I did in preparation for the Hartford half marathon. That was in October 2002, so, five months before my AML diagnosis.

Pulling the toenail off when it was loose enough, I felt like I was collecting my runner's badge of honor. (No, I didn't keep it.) A strip along the toe bed seems to be permanently damaged. As in, black. So if I'm going to wear sandals, I really need to cover that toe up. The rest look OK, but doing one would look silly.

It also is affected by the remnants of a toenail fungus. One time, a podiatrist gave me a medication for it. I had to have my liver checked. Looking back, I realized that probably wasn't a necessary drug to take.

At a recent pedicure, the woman cutting my toenails noticed from the shape that I had had ingrown toenails surgically removed. This was no fun, but it fixed the painful problem. They never grew back. She said I was lucky, because that's not always the case.

I liked the dark blue-gray color I got in Costa Rica. It stayed on for a long time.

When I was in Boston this week, Diane had the fun idea to get a pedicure together. I would have gotten the Costa Rica color, but the salon had a lighter version for spring. We both got the same color. Kind of when we used to wear the same outfits, only this time it was just our toenails dressed up.

The time I went way down & came back up

My home away from home for more than 3 months

Consider these blog entries, written by my sister when I was in the hospital after my fourth bone marrow transplant.

They are tucked into a March, 2009, post headlined I'm still here, in which I wrote, 

This is the first time I've been able to look at my computer for a month. Sorry I kind of disappeared; I was pretty much out of it although I'm starting to come back. I'm going to let Diane do the talking. She fished around and found some e-mail addresses where she sent updates. 

Diane said: Thank you for your calls to Ronni’s room and cell phone, and for the many emails you have sent to her recently. I have retrieved some of the messages and I wanted to send this message to let you know her status. At the moment, she is not answering either her cell phone or room phone, and is not able to check emails. She has suffered some complications due to various factors and is not alert to talk. However, since yesterday, there are some signs of improvement. The doctor told me this morning that ‘we are not out of the woods’ but there are some encouraging signs – better blood counts, stable heart rate and blood pressure, and some indications of better kidney functioning. The 3 kids and Jim were there today even though I know she didn’t want them to see her as she looks right now, but I felt it was important, as did they, for them to come.

2/15/09
Many of you have called or sent messages for information about Ronni so I am sending this as an update.

As I said before, she has had many complications, the most pressing of which is kidney failure that has led to a number of other problems including fluid build up in her lungs and as well, she is now in a form of a coma. Last night they moved her to the ICU where she is being closely monitored, awaiting a special bag of platelets (which were supposed to arrive yesterday at 4:30 but are being held up at the Red Cross and won’t get there until 4pm today.) At that time, they will begin dialysis with the hope that it will take off sufficient fluid to help regain consciousness.

On the positive note, her white count doubled since yesterday, which shows some signs of hope that the transplant is proceeding well. Her vital signs are stable. She is a real fighter. Her children saw her on Friday when she still had some level of consciousness, and she knew they were there for which I am very grateful.

2/18/09
Ronni was moved yesterday from the ICU back to the 6th floor – pod 6A and is in better condition. Her vital signs are stable, her white count and platelets are up, and the doctors are pleased with her progress overall. She has now had 2 rounds of dialysis and they see some improvement from this process, particularly in the fact that she is more alert. She opens her eyes occasionally and can follow some commands, but is still not talking and not fully conscious, yet it is progress.

On the other hand, she continues to have multiple complications – infections, fevers, problems with blood pressure, kidney failure, and GI bleeding… some of which is under control or being treated through dialysis or medications, and some that is being tested further.

2/23/09

The team of doctors are superb as are the nurses on her floor which are close to being in an ICU type setting. She does have periods of being alert and wants her phone, books, and computer back – all of which is a good sign but I’m sorry to say she is a long way from being able to access them. I don’t think she is in any pain, but is very weak and asleep most of the time.

We (Ben, Joe, Katie, Jim, and me) had a long meeting with the oncologist today. I wanted her children in particular to hear directly from the doctor what we are dealing with and what the treatment plans are. There are many elements that are being addressed individually and collectively. We are taking each day as it comes while being fully aware that things can turn for the worse at any moment. The kids will come back tomorrow for a visit as well.

3/2/09
Hi All,

After 3 very difficult weeks, Ronni is finally showing some signs of recovery. I don’t want to get too far ahead of myself here, but there are several good things, and yet of course a few challenging ones as well.

On the positive side, her white count has been stable and normal for a few days. She is engrafted, which means the transplant part of this ordeal has worked, for now. They have an interesting method of figuring out how much of her cells are from the donor and how much are her original ones – called a chimerism study (sp?). She is now 100% donor which is fabulous. I don’t think she ever got to 100% in the prior transplants. Other good news – after multiple studies of her gut and liver and other things, they have not found any new signs of problems.

There are some issues they are still following and treating, namely her kidneys are still not working. She continues to have dialysis every other day and that is definitely helping, but they are hoping after another 2-3 weeks, they will see signs of kidney recovery. Her heart rate has fluctuated as well, but it is being treated. And the damn CMV (a virus she has battled off and on for a while even before this transplant) is back, but also being treated.

All together though, she is making progress. Tonight for the first time in about 3 weeks she had something to eat – pureed fruit and yogurt – and not much of it, but nevertheless, it was food.

I wouldn't have delved back into past blog posts had not Joe sent a text marking the significance of the Feb. 22 date and his associations with it. It was the date that Diane called the family back to the hospital to say they weren't sure I would make it through the night. 

It's not like I can forget what happened, but nine years is enough time for me not to remember every significant date. It's interesting to be reminded and to compare and contrast.

This Feb. 22 was that crazy hot day. I played tennis, had coffee and a treat with Donna, then worked on some writing projects and walked the dog. I had dinner with Katie at Iya Sushi and Noodles , and then, because it felt like summer, topped the day off with an ice cream Sunday.

Back in the same time period nine years ago, I couldn't even turn myself over in the bed, let alone think of eating an ice cream sundae. 

Coming in for a landing

Blowing in the wind, Wellfleet

Dissonance: One day running around New York and seeing two shows, another on the beach with my hair blowing in the wind, and then back in the chair with a needle in my arm.

This all happened in a short period of time. The Cape Cod mini vacation ended Wednesday morning, when Katie and I drove to Logan Airport for her flight back to Minneapolis and I went straight to Dana-Farber for the light therapy treating my graft vs. host disease of the skin. But it was wonderful and restorative so I can't complain. Well, maybe a little because it was so short and when the planning and the thing itself is over, the inevitable letdown occurs. Think, First World Problem-itis.

I got to Dana-Farber early enough to go up to my old hang-out, 6A, one of the bone marrow transplant units at Brigham and Women's Hospital. Two of my favorite nurses were there. We gave each other big hugs. One got tears in her eyes when I showed her the photos of me and Nell. The aide who bathed me when I could barely move came over and talked to me about how sick I was. My tough-love nurse, Myra, wasn't there, and I said to send her my regards. We talked about how she had made me sit in my chair when all I wanted to do was get back to bed, and she had said, "You'll sit up and eat your lunch like a normal person." We talked about how when I relapsed the second time, I went straight to the sixth floor and asked Myra how I could go through it again, and she said, "You can have your pity party for an hour and then you'll put your boxing gloves on."

Race Point sunset

I also dropped in on a patient who had just had her bone marrow transplant. I am happy to be getting more patients to talk to through the One-to-One program in which patients who've been there talk to those going through it.

I'm more useful for people who are having a hard time or who have relapsed, and I guess that's not what patients were looking for. But recently I got three.

 If they ask directly for my story, I tell it to them, but if they don't, I gloss it over by saying a lot of stuff happened to me including relapse but Dana-Farber figured it out. I don't like to get into too many specifics because I understand the tendency for someone to think it might happen to them. On the positive side, of course, I'm alive and well so that is what I focus on.

I gave two tips to the patient the other day: During your year of dietary prohibitions, you can still eat fruit by cooking it up with lemon and cinnamon; technically called fruit compote but named fruit mush by my mother and me. I also told her that if she wanted eyebrows, she could order stencils on line.

I was pretty tired by the time I got to the Kraft Family Blood Donor Center, and I fell asleep almost as soon as the needle went in. A problem with going on vacation with my kids is that I always want to do one more thing on the day that we're leaving, while they consider it packing up day only.
So I got up super early Wednesday and did my one more thing, going to the Flying Fish for coffee and a muffin and then walking over Uncle Tim's Bridge and looking at the water.

When I woke up from my nap, on Wednesday, my nurse told me I was almost done. It was only 5 p.m. and not the usual 6:30, so I asked if she had done five cycles instead of the usual six. No, she said, it was the faster new machine. Some people are doing it even faster by getting a needle in each arm, but I couldn't tolerate it because my veins have been used so much that I need to alternate and rest one arm.

I didn't have to deal with any crazy drivers because the crazy driver was me. I didn't want to do any more driving in the same day so I stayed over at Margaret and Nick's for a nice dinner and got a fresh start the next day.

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.

Back to Boston for another procedure

It is impossible for me to stay away from Boston for too long.

Tomorrow I am heading back for an endoscopy to try to pinpoint and treat the cause of the stomach problems that I have had for more than two weeks. Melissa suspects it is a flareup of GVHD.

When I talked to a woman at the endoscopy center at Brigham and Women's Hospital today, she said that because it is a brief procedure, I would not be getting anesthesia. I thought but did not say, "You have got to be kidding." I said, "I'm sure that I got it the last time because I don't remember a thing."

She checked and said I was right. So, no eating after midnight.

The good news is that Joe is driving me and I do not have to depend on the whims of an unknown driver.

In other good news, I went closet shopping and found a pair of shoes I can wear to the Great Futures Gala on Thursday. I wore black lace-up Granny boots with a black skirt over the weekend in New York, and my friends said that although they looked cute, I should get some real shoes to go with the same skirt when I wear it to the Ludlow Country Club this week.

My mother's memorial service in 2006 marked the last and only time I wore the shoes. I never felt like wearing them again. Nor did I feel like giving them away. I guess it's time to give them a try.

Thursday's dinner event is a fundraiser for Springfield's Boys and Girls Club Family Center. The keynote speaker, Ruth E. Carter, is an alumna of the center and a Hollywood costumer designer who I interviewed on set at Mystic Seaport when she designed the costumes for Steven Spielberg's 1997 movie "Amistad."

I would like to say hello to her and also see several people from work who are going. It is a good chance to get dressed up and go out for a good cause.

I hope I feel up to it.

To Boston and back in a day

I couldn't complain about the musical taste of the driver who took me to Boston yesterday because,

1) It wasn't my car
2) He wasn't my kid
3) It would have sounded old-ladyish to ask him to turn the radio down, and,
4) I knew he wouldn't have received it well if I had asked, "Could we listen to NPR instead of to rap?"

But he seemed to understand when I asked if he would change the station when a singer wailed, over and over, "I miss my dog, I miss my dog, I miss my dog!"

I told him I loved my own dog very much and it upset me to hear those words.

Of course I also can't complain because the ride was covered by insurance and I got to doze on the way there and back. It was a one-day excursion to Brigham and Women's Hospital for me to check in with one of my slew of doctors, a gastroenterologist, who I see now and again for follow-ups on my graft vs. host of the digestive tract. I wondered if stomach problems that I have had for the last two weeks were related to a flare-up; he said that it was hard to tell and that it might just be a virus that is taking its time. If I am not better in a week I will probably be facing another endoscopy. I wonder if it is from stress.

He is one of the rare doctors who runs on time.

As usual, I brought enough reading material to last for hours.

When I was called on time, I was careful not to say, as I did at my last visit in a similar circumstance, "I think I might faint!" As you can imagine, the nurse at that time looked at me in alarm. Not a good thing to say in a doctor's office.

I was tired when I got home, even though I had slept in the car. Not a good kind of tired. I put on my running clothes because in the not-to-distant past even a short jog would have perked me up. But then I remembered that I had decided the running gods were telling me to stop because I have been unable to find a new version of the neutral trail-running shoes that are the only ones Ken Holt likes for me.

The peanut gallery and even Dr. Berger, an avid runner who until recently asked me when I was going to run the Saint Patrick's Race again, have said that especially with the graft. vs. host, my body might not be able to handle it any more without injury. Actually Dr. Berger said I probably couldn't run the same distances as before, which is not the same thing as totally stopping. I think I would be happy with just a couple of miles a few times a week, starting with a walk-run instead of just running like last time when I re-injured my toe.

I called the Northampton Running Store, where the real runners work, including Northampton's own Nancy Conz, and explained my dilemma, which is that Ken Holt hates most of the shoes that I buy.

She said she knew of his reputation for toughness and added, "Ken Holt needs to come into the store to see what we have."

What they have sounds promising, so tomorrow I might just go up there to take a look. Perks me up to think about it.

'Fun' at Dana-Farber

This week's double-header at Dana-Farber was an about face from last week's, with transportation running smoothly and some socializing to be had.

A different driver from a different service took me both ways. He was courteous and on time and even called me when he was getting close. And he came into the driveway! He told me he is from Russia – Siberia – and he has lived in Boston for six years. His Americanized name is C.J., but his real name is Sergei.

I showed him the back way to Boston through Ludlow, and he was taken by the beautiful scenery. He remarked on the farms with cows and the lush trees, not the kind of scenery he saw in Serbia or Boston. Sometimes we take it for granted, and it's good to see it through new eyes.

The photopheresis was uneventful. I had dozed in the car (a luxury to be a passenger and not fighting to stay awake), so I wasn't sure if I would sleep, but I dozed some in the chair and also read the paper and watched the penultimate episode of The Unbreakable Kimmy Schmidt, which made me laugh out loud.

The cab taking me to Margaret's was on time too, and although I was not pleased that my pickup time the next morning was 5:50 a.m. for a 7 a.m. appointment less than half an hour away, I was glad that I got to spend a little time in Dana-Farber's beautiful Stoneman Healing Garden.

The rest of the day was nearly a social event.

I saw Melissa for a brief exam but mostly to check in. And who should walk in but one of my favorite doctors, Francisco Marty, whose beautiful photos I sometimes share on Facebook. We shared a hug and a laugh after he asked, "How's the internal sunburn going?"

It took me a minute to realize that he was talking about the ECP.

Since I wasn't sure how long I would wait for Melissa, I had left some leeway when scheduling my ride home. I ended up having extra time, so I walked over to The Brigham and went up to my old transplant unit, 6A. It was wonderful to see a couple of nurses and the aide who had bathed me in bed when I could barely sit up.

Going over the bridge from the Yawkey Center to the hospital provided the opportunity for me to pay it back for the many times people had shown me the way.

Two women were who were going to the Brigham were asking for directions, and since I was going that way I said to follow me.

I played tour guide along the way, gesturing to the birds carrying medicinal herbs on The Bridge of Hope and showing them the Emily Dickinson poem Hope is the thing with feathers that served as inspiration for the motif.

They were amazed by it all and said they looked forward to stopping on the way back to take a closer look.  I hope that wherever they were going, I was able to show them something that might make their trip easier just as other people have done for me.

The "in between" cancer anniversaries

Cancer anniversaries – some call them cancerversaries – can be good, bad and in between.

Bad, of course, is date of diagnosis, and good is date of finishing treatment that recedes in time. I am four years, two months and one week out, but who's counting. God willing and the creeks don't rise, I will get to five years and call it a day.

This time of year being ten years after my diagnosis, I am thinking more about the in between than I usually do. I am in between two of those dates, April 4 and April 9.

These dates are not in my head. They're in the little blue book that Diane gave me 10 years ago to keep track of everything. Nowadays many people mark important dates in their phones or computers, but I like having this spiral notebook as a visual reminder of my cancer journey. It's coffee- and ink-stained, and during bad periods, my handwriting is almost illegible.

I wrote, "Last day of work: Friday, April 4."

And underneath that, "Admission, 4/9/03 (Wednesday)."

I can see both of those days clearly.

On Friday, thinking for some reason that I'd get something done, I went to work. I figured I would be treated locally at Baystate Medical Center. But the phone rang constantly. It was friends and family insisting that I go to Dana-Farber, one of the top cancer institutes in the country and about 90 miles from me in Boston. I finally gave in, and that Monday I left for Boston, saying goodbye to my children and my life as I knew it.

After my initial appointment with my new doctor, Daniel J. Angelo, Diane and I enjoyed a couple of days of retail therapy in Boston while waiting for a time to have surgery to implant the Hickman Catheter through which I would receive chemotherapy. We saw a movie, went to a jewelry store and picked up books and soft clothes to wear in the hospital – yoga pants and T-shirts so I wouldn't have to lie around in those awful hospital johnnies. That Wednesday, we went to Brigham and Women's Hospital loaded with stuff such as posters to put on the wall, videos, books, my quilt that I had brought from home and a lamp to serve as an alternative to harsh hospital lighting.

After the surgery, we set up the room, and it was finally time for Diane to leave. It was just me and my fears.

Then a bubbly nurse brought me Oreos. She chatted about this and that as she sat with me for a chemotherapy "push" going directly into my veins. The fear on that date was worse than the reality. Later, of course, as the chemotherapy did its work, I became extremely sick. But that night turned out to be OK.

Judy became one of my many nurse friends, and I still seek her out when I return to visit from time to time.

A little something extra

I find it kind of embarrassing to say I have a hernia. Maybe because it's an odd word that sounds a little like hemorrhoid. Who knows, I might be the only person to think this.

In any case, that's what I have. (A hernia, not hemorrhoids.) I am having it fixed the Monday after Thanksgiving at Brigham and Women's Hospital in Boston.

On Wednesday, I go to Boston for pre-op instructions and will then probably be stuck in traffic for eight hours on my way back to Western Massachusetts.

I have an umbilical hernia, a fairly common problem and one that can be attributed to pregnancy, obviously a delayed reaction on my part.

Thanks, kids.

It's a day surgery to be followed by some pain and no running, tennis or yoga for at least a month. I should be able to walk the dog. Maddie will be happy.

Just a little something extra to keep life interesting.

'Coma Day,' revisited

While many people observed Valentine's Day yesterday with hearts and flowers, I kept thinking of it as "Coma Day."

Two years ago Feb. 14, I slipped into a coma while hospitalized at Brigham and Women's Hospital in Boston. It was two weeks after my bone marrow transplant, and while in the days right after the transplant I seemed to be doing well, things quickly took a turn for the worse.

Diane said I began having trouble holding onto things, dropping a milkshake I was trying to drink. I started acting less aware. She told one doctor she thought I might be having a stroke. Then I began to lose consciousness.

Naturally, I can't recreate it or imagine it. Here's what Diane wrote in a group e-mail dated Feb. 15, 2009:

"Many of you have called or sent messages for information about Ronni so I am sending this as an update.

As I said before, she has had many complications, the most pressing of which is kidney failure that has led to a number of other problems including fluid build up in her lungs and as well, she is now in a form of a coma. Last night they moved her to the ICU where she is being closely monitored, awaiting a special bag of platelets (which were supposed to arrive yesterday at 4:30 but are being held up at the Red Cross and won’t get there until 4pm today.) At that time, they will begin dialysis with the hope that it will take off sufficient fluid to help regain consciousness.

On the positive note, her white count doubled since yesterday, which shows some signs of hope that the transplant is proceeding well. Her vital signs are stable. She is a real fighter. Her children saw her on Friday when she still had some level of consciousness, and she knew they were there for which I am very grateful."

A week later I had woken up, but I continued to have problems with fever, GI bleeding, blood pressure, kidney failure and infections. At a family meeting Feb. 22, Dr. Alyea outlined the situation, saying that although I could recover, I had many serious problems. It seemed I might not make it through the night.

Well, here I am. I don't like reliving it, but it is hard to avoid. Hopefully as time passes I will feel less compelled to delve back in.

I observed the day by spending 45 minutes on hold while trying to resolve an insurance question, walking Maddie with my friend Ellen and then going to the Y, where I ran a little more than two miles on the dreadmill and then water jogged. I haven't done that in a while. It was pretty tiring, but I felt good when I was done. And my knees and feet felt OK. It was a good way to keep my mind off "coma day."

"You couldn't be in a further place from that now," Margaret said when I talked to her last night on the phone, a little weirded out from reliving it. "Just keep thinking about how utterly different things are now."

As my father would have said, "Good clear thinking."

My connection to Ted Kennedy, and other thoughts

Many people are talking about their connection to Ted Kennedy.

Here's mine. Well, it's not exactly mine. It's my mother's, but it has become part of the family lore and therefore feels like my connection.

I was at Brigham and Women's Hospital in Boston in 2003, during my first round of treatment for leukemia. It was early fall, around the time of my stem cell transplant (Sept. 18).

My mother came up to my room, all smiles. "I just bumped into Ted Kennedy!" she said. He had apparently been visiting someone at the hospital and was going out as she was coming in. She stopped him in the lobby. My mother asked if she could shake his hand, and he said, of course, yes.

The Democrats were in disarray, doing a lot of soul-searching after their losses in the 2002 midterm elections.

Mom said to the Senator: "I love you very much. But can't you tell those Democrats to get their act together?"

Kennedy chuckled.

"I'm trying, I'm trying," he said.

I got a chuckle out of it too.

Meanwhile, here are some observations based on things that happened to me in the past few days:

Ways not to unpack a bag after vacation: Pull clothing out of overstuffed bag one piece at a time. Move bag from one side of the room to the other so as not to trip on it. Take remaining clothing out of bag and put it on the floor, hoping that it will fly into your dresser drawers when you are sleeping. Realize that actually putting everything away is less painful and probably quicker than what you're doing. Procrastinate a little more.

How not to fill out forms and gather documents: Put it off until late in the day. Start printing papers and answering questions when you are bleary-eyed. Print two copies of one thing and none of another. Attempt a remedy, then get confused about which pile is which. Accidently delete something and reach for hard copy. Search for hard copy for more than an hour. In an instant, realize that it is two chairs down from you, in pile #2 rather than pile #1, which is in chair next to you.

How to quickly subvert a resolution: Start the day by vowing to cut down on sugar. Immediately add brown sugar to your oatmeal and follow with coffee cake.

How to get rich quick: Realize your wallet has $1 in it when you are just back from a vacation in which the twenties seem to have flown out the window. Son having left for college earlier that morning, check the top of his dresser for change. Find it scattered there. (Never look in drawers, only surfaces.) Pick out bunch of quarters and remember to return for small change. Go into bedroom sporadically occupied by older son. Jackpot! Help self to quarters strewn on dresser. Remember to return for small change if the going gets tough.

How to lose track of your limitations: Having lost the taste for coffee and then happily regained it, go about regular routine of taking coffee cup around with you all morning. Feeling like a big shot, go up stairs carrying laptop in one hand and coffee cup in the other. Lose balance and start to fall backwards. Make correction leaning forwards, stumble and almost splash coffee on stairs. Luckily, make it upstairs without big spill, vowing not to try that again for a while.

How to eat dinner alone and at a crazy hour: Do who-knows-what all day and go to store around 6 p.m. for missing ingredients needed to make lasagna that you vowed to make last night but never did. Start cooking around 7. Figure daughter will have to wait for dinner after returning from concert, but figure it's better than nothing. Stand there when daughter comes home with friend and says she's just grabbing some stuff and heading to another friend's house for a sleep-over. Look shocked, then realize she already told you she might do this. Eat while reading a book, at table still strewn with papers from above-mentioned project, around 9:30.

Realize that, after a period when you had to force food down, you are thankful you have an appetite for the lasagna, it turned out well, and there are leftovers to share with daughter tomorrow.

Monday clinic report

After having my blood drawn today, I went across the street to visit PJ at Brigham and Women's Hospital, where she is having her second transplant. I met her through her blog, on which she is, with eloquence and humor, telling her story. We discovered that we have some amazing similarities and have, with a group of other friends from the blogosphere, been supporting each other ever since.

It was good to see her and meet her husband and two sons. She seems comfortably situated on 6A, my home-away-from-home for much of this past winter. Her room is next to my old one. I can clearly remember lying in bed staring out at the pod, watching patients walk around and wondering when I could do that again. It's been a long haul since I took my first faltering steps with a walker, got half-way down the pod and had to pause to catch my breath before moving with difficulty to the end of the pod, and then turning around and looking longingly back at my room and my bed, which seemed pretty far away.

Naturally you go back to a place like that with mixed emotions.

I was glad to check in with PJ's nurse today, Christina, who happened to be my nurse on one of my darkest days when they weren't sure I would make it. I appreciated that I was standing up talking to her instead of lying in bed. None of my other regular nurses were there, but I was happy to see other old friends, including nutritionist Paula, who helped find me things to eat when I could barely tolerate anything, and personal care assistant Donna, who buzzed my hair for me when it was falling out in tufts.

After that, I returned to the clinic and met with Melissa and Dr. Alyea. My counts were: platelets, 10 (at least not in single digits); hematocrit, 23; and white, 4.9. This is lower than last week, but they said it was fine. Dr. Alyea lowered my Prograf from .5 mg twice a day to the same dose once a day. He said he hoped that would help my body stop chewing up platelets and red blood cells. Next, I got a bag of platelets and two bags of blood, almost closing the place down..again.

Oh, by the way, Melissa also said not to worry about the two spots on more forehead. They are already fading and were probably a reaction to bug bites, as my rational mind tried to tell me.