Saturday, August 31, 2013

Tons of tennis, all around

Me with Donna and Deb at the U.S. Open
We had a great time but an exhausting one at the U.S. Open yesterday, Day 5 of the tournament, going by bus with a group from the Enfield Tennis Club.

With so many matches occurring, it was a little overwhelming, but it was fun to see all the scores updated like so many trains arriving and leaving from Penn Station. Our seats in Arthur Ashe Stadium were way up in the nosebleed section, giving us an aerial view of Novak Djokovic's easy match against   Benjamin Becker. It was so hot up there that I couldn't make it through the third set. I'd like to get the tickets earlier next year and sit closer.

We did, however, sit at courtside for a singles match between number 8 Angelique Kerber and Kaia Kanepi; sitting so close, you really get a sense of how hard they hit. We also saw a women's doubles match, which was good for us doubles players.

And at USTA member appreciation day, we paid homage to the trophies. ("No touching!" we were warned.) It was a little hokey, but we got into the spirit.

While we were there, I got a call from the dermatologist's office with the results of the biopsy of the spot on my lip. It turns out to be another squamous cell, and I will need to set up an appointment with a surgeon in Boston to get another Mohs procedure. A spot on my wrist was also squamous cell, but the biopsy itself took care of it. I need to return Tuesday to get the stitches out, and then I will get a call from a surgeon's office about scheduling the appointment.

The call was disappointing because when I saw my dentist Thursday to fix a chipped filling, he said he was almost sure it was herpes, not cancer. I am not too happy about this, but I tried to keep it from ruining my day.

Not being 100 percent, the running back and forth and up and down stairs wore me out. It might be tiring if you didn't just have major surgery a little more than a month ago. I fell asleep as soon as I got on the bus.

There is plenty of tennis to watch in the next week, and now I have a different perspective because I've been there.

Tomorrow, I might go hit a few with Donna.

Wednesday, August 28, 2013

Back in Boston for another biopsy

Well, I've made my last college dorm bed.

Any mother who's completed the ritual knows how important it is. Wasn't it just yesterday, you wonder, when you packed their Barbie or Teenage Mutant Ninja Turtles lunchbox and put them on the kindergarten bus?

I'm past crying, but it still tugs at my heart.

The past few days have been very busy. My birthday Saturday in Wellfleet couldn't have been nicer. The day started, as usual, with me getting up early and going down to the Flying Fish for blueberry muffins and a cup of special Flying Fish coffee which I drank on the way home. Ben and Meagan went to the flea market and then later they went with Joe shopping downtown. Katie and I swam and walked, and Katie got in a run. We had a cookout and then – surprise! – a cake. I got a really nice pair of earrings and a little cutout of a dog on a plaque that read, "When all else fails, hug the dog."

While I have nightmares after watching "Breaking Bad," I had pleasant dreams after my little party.

Moving out the next morning went seamlessly, minus my notorious lollygagging and the usual subsequent nagging by Joe or Katie followed by digging in on my part. Maybe my birthday brought me some wisdom about the need to sometimes move along more quickly...or maybe it was just a good day.

We drove home Sunday and then Katie and I turned around Monday to move her back into school. It took most of the day Monday to get her stuff into her room. At night, we ate at Veggie Galaxy, which serves traditional diner food made with vegetarian and vegan ingredients. Since it was a diner, we felt like we needed to top off our meal with delicious Boston Creme Pie.

Yesterday I saw Dr. Lin, my dermatologist. She did a punch biopsy on my lip; she also did one on a spot on my wrist.

"You're like a garden," she said. "Of delights."

She thinks the spot on my lip is either Herpes or another squamous cell carcinoma. The results may be back by Friday, but in any case she wants to see me next Tuesday.

She said  I could drive back home, but as the novocaine wore off, I quickly realized that would not be possible. It hurt so much that tears sprang to my eyes as I sat in traffic on Route 9. I went straight to Diane and David's, took some pain pills, and soon felt better.

It's Wednesday morning now. I'm filling up on coffee and am about to try going home. If I get tired, all my favorite rest stops await me.

Friday, August 23, 2013

All's well in Wellfleet

Hello from beautiful Wellfleet.

Katie and I got here around 3 on Wednesday and did a lot. We went swimming in Great Pond, which we have nicknamed "the pond with the stairs" because of the long descent. There is no beach at the bottom of the stairs, so you have to just jump in. Once in, I was careful to stay where I could stand because I still don't totally trust my strenght, but as I floated on my back and looked up at the clear blue sky, I couldn't have been happier.

I made it up and down with no mishaps. Going up was actually easier then going down. Then we went out to dinner downtown at a fun place called The Juice, and from there to the harbor for ice cream at Mac's.

Ben and Meghan arrived late, and then Joe got here Thursday morning. Poor guy was stuck in traffic for an hour on Route 6 about 10 miles from here.

I've been doing my morning thing, going to the Wellfleet Market for bagels and the paper, then on to the Flying Fish for muffins and croissants. Yesterday I had to go down near the dock to get the sticker for our car, and since it was early I stayed down there watching the boats, reading the paper and having a croissant and a coffee. It was so pleasant.

Yesterday we all piled in and went to the bay beach for a while and then on to one of our favorite places, The Beachcomber, for dinner. The parking lot is smaller due to the damage from Hurricane Sandy, but the wait was no longer than usual, about an hour. It doesn't matter because it's fun to look down at the beach. You can see a lot of seals, which is not great because the seals are coming closer and closer to the beach, bringing sharks. All the beaches have "beware of sharks" signs, and one (Marconi) was even closed for a while. I went for a long walk with a tiny bit of jogging but only got my feet wet.

Helping hands are all around. Not only my kids', but also other people who notice me looking tentative. For example, today I was just about all the way up the path from the beach to the top of the dunes when I paused to consider the easiest last step to the parking lot. A man reached down and pulling me up the rest of the way.

The spot on my lip is still painful. Actually, it's not just one spot anymore but rather my whole mouth that is burning. It's hard for me to eat; last night, when I would usually order a hamburger or fish and chips, I considered a grilled American cheese from the kids' menu. Then I saw cheese quesadillas, so I had those, chased down by a strong Planter's Punch.

Dr. Lin wants to do a biopsy, so after I drop Katie off at Brandeis Monday, I'm going to spend the night in Newton and then go to Brigham and Women's for my appointment at 10 on Tuesday.

As much as try avoid worrying about something before you even know what it is (and for that matter worrying about it afterwards), it's hard to do. Plus there's just the hassle of having another biopsy.

When Dr. Alyea looked at it last week, he said he was unimpressed. I have to assume that if he thought it was serious, he wouldn't have joked about it. In any case, I hope they figure it out soon so that I can eat without pain.

Monday, August 19, 2013

The trouble with my tongue

It turns out that the problem with my tongue is thrush, a yeast infection brought on by all the antibiotics I have taken recently, both to treat my pneumonia and given routinely with the kidney surgery.

Dr. Goguen prescribed lozenges and a mouthwash. If it isn't gone in a month she will have to do a biopsy, but she seemed pretty certain that won't be necessary. This is a big relief because the surgeon who removed my tooth on Thursday wrote down that he saw signs of dysplasia: abnormal cells. Naturally that made me suspect that I might need more surgery on my tongue.

After that I went across the street to the Kraft Blood Donor Center for my "therapeutic phlebotomy," withdrawal of a bag of blood to help lower the amount of excess ferritin being stored in my liver due to all the transfusions I had. I am trying to schedule this once a month instead of taking a daily dose of the nauseating Exjade, which also lowers ferritin over a long time period.

So far, so good. The only problem left to address was the painful sores on my lips. Katie, who had driven me to Boston, went with me back to Dana-Farber so that Dr. Alyea and Melissa could take a look. The viral culture came back negative, so it is a mystery. I am going to try increasing my dosage of Valtrex, the anti-viral I already take. I tried this a couple of weeks ago to no avail, but they want me to try it again. In the meantime Melissa is scheduling me with one of their dentists who deals with this kind of thing.

So, another specialist. Sigh.

Meanwhile, Dr. Alyea said he might consider a topical steroid if it comes to that.

Back home, I could barely eat my dinner...again. I open my mouth wide enough to get food in without touching my lips, and then I nibble with my front teeth like a little rabbit. Last week's extraction makes it difficult to chew on the right side, which is sore, and the left side is already missing three teeth.

In a mother-child role reversal, Katie said I had to eat something. She pulled the applesauce out of the refrigerator, brought a bowl and spoon over and asked me how much. Washing the applesauce down with ice cream, I am feeling better now.

Sunday, August 18, 2013

Boston bound again

Katie is going to drive me to Dana-Farber tomorrow to have my tongue examined. I am glad I got an appointment so soon. Melissa said the area that seems to have dysplasia, or abnormal cells, is so small that she didn't make much of it when she saw it at an earlier appointment. She said not to worry, so I am trying to go with that.

I still have major tooth pain. If I went by myself I wouldn't be able to take anything, so that is out of the question.

I also tried to schedule an appointment for therapeutic phlebotomy to get some more of the excess ferritin out of my system. Nobody called me back, so I'm unsure if it will happen.

Just another summer day.

Friday, August 16, 2013

One more thing

The tooth came out fine, with one big yank, but then I had a feeling of dejá vu when the surgeon looked at my tongue and said he saw some dysplasia on the left border where I already had a piece removed.

The dejá vu is from another dental surgeon two years ago who was removing two teeth and saw signs of what he thought was cancer on my tongue. (Picture me, zonked on Benedryl and Ativan, jumping out of the chair...or wanting to.) I later had surgery to remove a scoop of my tongue; it turned out to be precancerous but something that needed to come out anyway.

Is that going to happen again? Luckily I won't have too much time to gnaw on this (SORRY, I just needed to amuse myself with this awful pun) because Melissa scheduled me for an appointment Monday to see the doctor who is responsible for my tongue. Up to the head and neck oncology department I will go, feeling once again very strange to be there.

I told Margaret about this while she was pruning her garden. I tend to think of all these intrusions on my body as one doctor after another chipping away at me.

Margaret said to think of myself as a plant being pruned so that new healthy flowers or foliage can grow. As I sit here at my kitchen table looking at my garden, I am comforted by that image.

If I am a plant, then I need to be fertilized, and this morning I am having the perfect thing, being sure to chew on the side that doesn't hurt: A piece of Evelyn's freshly-baked blueberry crumb cake, with a side order of fresh blueberries that are melting in my mouth.

Wednesday, August 14, 2013

Good news day

It was a busy day in Boston as usual, with running back and forth between Dana-Farber and "The Brigham" and fitting in two appointments, my post-op with Dr. Steele at the hospital and my check-up with Melissa at Dana-Farber.

Both went very well. Dr. Steele said that my incision was healing nicely and that I'd be able to wear a bikini next summer. So kidney surgery will end up miraculously giving me a bikini-body? That's nice.

He did a quick ultrasound, which looked fine, and said I should come back in six months for a follow-up ultrasound. I was glad to hear him say that this incident was a fluke as opposed to being connected to everything that was done to my immune system. That kind of frees me up from looking over my shoulder.

I was also glad to hear that I can return to my activities. He said, however, that I should expect to be tired, not only because of the trauma to my body but also because it takes at least six weeks for the anesthesia to get out of your system. (It's been three weeks since my surgery.)

As for my check up with Melissa, she did another viral culture on my lip because the last one was inconclusive and the blisters still hurt a lot. My counts are good, especially my platelets, which are a whopping 140.

I'm grateful that my friend Claudia gave up her day to take me. It was a good opportunity to catch up, because we don't see each other that often. We met Katie for lunch and then got back in the car, where I immediately conked out.

Tomorrow is tooth-pull day. Can't wait.

Monday, August 12, 2013


As most people who have had a serious toothache know, it can really drive you crazy.

We had chicken grilled to perfection last night, but I had to give part of my piece to Joe because it hurt so much to chew. I am glad that I have leftover hydromorphone, the narcotic that was prescribed for the pain from my kidney surgery. Pain is pain, and I felt much better this morning after taking some. Tylenol just doesn't do it, plus I am not supposed to take too much of it because it's bad for the liver.

I am counting down the days to Thursday, when I can get the damn thing pulled. Everyone reacts to these things differently; I predict I will hunker down and take more pain meds.

I also hope that at my post-op on Wednesday, I will be cleared to return to yoga. When I first get out of bed in the morning, I limp to the bathroom like an elderly person. I am feeling very uncomfortable in my body. Some of the steri-strips are peeling off my incision and it looks totally healed, so I think it's OK to do a little yoga on my own without fear of having the thing pop open.

It doesn't help that after watching "Breaking Bad" last night I had terrible nightmares.

Sunday, August 11, 2013

A walk around the lake

I took my longest post-surgery walk this morning, going around the smaller lower lake and back through campus with Mary and Jerry.

We were about two minutes from my house when I said I couldn't make it anymore. Mary asked if I wanted Jerry to pull the car out to come get me. It was a joke, but I really was tired.

As I write this, my legs hurt. I drove to Best Buy this afternoon, and the only purchase I could think of was rechargeable AAA batteries for my land line. Last time Ben was home and the land line rang, he said, "I can't believe that you people still use land lines." Well, what can I say, I don't want to give it up.

When I got to Best Buy, I parked my car and took a power nap in the middle of the busy parking lot. I really needed to do it in order to get home safely.

I feel like I need to push it a little to build back up. After all, my legs hurt from lack of use. I'm going for my post-op Wednesday and will ask about it.

In any case, I have to stay awake for "Breaking Bad."

Friday, August 9, 2013

Feeling tired

The pain has subsided, except for my blistery lips. No word on that.

Yesterday I went all day without taking a pain pill, although I am tempted to take something for my lips. And if I do? So what. That is what they are there for. There is no award for toughing it out.

Last night I made stir fry and could hardly eat it. Finally, when I saw Joe eating it after hockey, I powered some down.

Yesterday was hot and humid. I could barely stay awake. I even slept through "Hardball." Usually all the yelling would have kept me awake.

I asked nurse Joe if he thought I was relapsing.

"Mom, you're old and you had major surgery two weeks ago," he said.

Well, not that old, but yes, I did just have major surgery, and at the time they also did plenty of blood work.

The fear of relapse has definitely taken a back seat, but I wonder if it ever goes away.

Wednesday, August 7, 2013

It it's not one thing...Part Two

Yesterday I had a toothache, so I went to the dentist.

He said the tooth in question is decayed beyond repair. This happened quickly due to the same reason that four other teeth needed to be removed: Immune suppression during chemotherapy and from prednisone use now.

I am not a candidate for implants. "How am I going to chew?" I asked my dentist. "You'll be able to chew a steak, as long as it's a good one," he said.

He said it should come out as soon as possible, but the first available slot it Sept. 30.

I was talking to a friend about this and I asked her if we'll still be friends when I am toothless and homeless. OK, so I'm prone to exaggeration.

I am also wondering if a certain friend is slinking down in his chair when he reads this. When he took me the last time, I had taken two Ativan as instructed. Afterwards, my mouth stuffed with cotton, I insisted that we go out for coffee and visit his mother. He got me home only be promising to get me coffee when we got there. It was a moot point, because I conked out.

Removal of the other two teeth was an adventure also. I got those pulled in Boston at Brigham and Women's because my platelets were too low for comfort and I needed to first get a transfusion at Dana-Farber. I always take Benadryl with platelets to head off an allergic reaction. On top of that, I took two Ativan. I was so loopy that my sister practically had to drag me over to the Brigham.

During the extraction, I could barely keep my mouth open. The surgeon said I was a hoot.

Luckily, my platelets are over 100 now.

Monday, August 5, 2013

If it's not one thing...

Well, the other thing this time is that I have spots that look like canker sores all around my lips, and some on my tongue.

They began to pop up in the middle of last week. As per Melissa's instructions, I increased my usual dosage of the anti-viral Valtrex from the usual prophylactic dose of 2,000 milligrams a day to 3,000 milligrams daily. This hasn't helped, and last night I could barely open my mouth to eat dinner. Lucky Maddie had part of my hamburger. This morning's blueberry pancakes went down well. Yesterday I even had to drink a Coke through a straw, and this morning's coffee, which I usually like very hot, burned my lips.

Melissa said to get a viral culture, which Dr. Berger's nurse said he could try in Springfield this afternoon. Joe is using my car because his car has been deemed unsafe to drive unless he gets costly repairs which don't make sense given the age and mileage on it. He is picking up a new one over the weekend. So he is leaving work early to pick me up at 3:30-ish for a 4 p.m. appointment in Springfield.

Meanwhile even if I had my car, I wouldn't be driving it. Eleven in the morning is about as far as I can go without taking pain medicine. This is progress over last week. There is no sense in toughing it out, but still I did want to see how far I could go this morning before my incision started to hurt. When I noticed that I wasn't breathing in fully, I realized that it was time to take the pills.

The weather is so beautiful that Maddie and I sat outside while I read the paper and had breakfast. I am understandably paranoid about the road after she nearly got killed a few years ago. I didn't want to leash her up because that limited where she could lie. I called out every time I lost sight of her, and each time she was either under a bush right near me or resting the shade where I couldn't see her.

Good dog.

Saturday, August 3, 2013

A better beginning

I woke up this morning with the strangest sensation: the near-absence of pain.

I did have to take Tylenol in the middle of the night, but that said, I still think there is an improvement. Even making it through breakfast is an accomplishment. I expect I'll have to take something as the day moves on, but this little bit of progress is making me very happy.

Nothing like a week of intense pain to make a small bit of pain feel like a gift.

I think I'll go jog around the block.

Only kidding!

Well, actually, a couple of hours later...

I thought I should add that around 11 I had to take some pain pills, but still, it's progress to make it half-way through the morning when just yesterday I had piercing pain as soon as I woke up.

It probably didn't help that I fell asleep on the couch and then tripped on my sandals when I got up, landing on my rear end with a thud.

Joe came and picked me up by pulling on both hands. It felt kind of like water skiing.

Thursday, August 1, 2013

Pain problem persisting

Flower power

OUCH! No, I'm not talking about how much I am hurting, but rather how much it hurts to write a headline with such awful alliteration. But with laughter being the best medicine and all, I'm letting this go through (go through where? the copy desk?) to show that I still have a smidgeon of a sense of humor.

So as for the blog post:

I've been pretty stoical through much of what life has thrown me over the past 10 years, but the post-surgical pain after removal of the lesion on my kidney a week ago has really sent me through the roof.

Specifically I am talking about finding the right dosage of Dilaudid to manage the pain at home. I came home Monday with the dosage that was fine in the hospital: six milligrams of Dilaudid every three hours and two Extra Strength Tylenol every four hours. Yesterday it wasn't working. I stood in the middle of the kitchen floor crying, the phone in hand. I could hardly breathe. I called the urologist's office in Boston and a receptionist said she would mark my message URGENT. When an hour passed and nobody called, I paged Melissa. Bless her soul, as Joe Biden would say, She called back immediately. Just hearing her voice was comforting. She said she would have someone from Dr. Steele's office call this morning and I did, indeed, get a call from someone who explained that a pain spike after getting home is common.

You feel pretty good, like I did, so you overextend and then get set back. I knew to watch out for doing too much, but I didn't quite understand that just walking around the house requires effort.

They want me to walk, but the rest of the time I should do nothing. Yesterday I did empty the dishwasher and fold some clothes. I also stood up and sat 10 times to test my quads and did a little stretching. I thought I wasn't doing anything that would affect my incision but hey, genius, I should remember:

The toe bone's connected to the foot bone,
The foot bone's connected to the leg bone,
The leg bone's connected to the knee bone...

By the way, a nurse did finally call me back yesterday from Dr. Steele's office...around 5:30 after business hours. I missed the call and was told upon paging her that she was off-page. Joe wasn't home from work, so I was basically on my own until Melissa called. Just wondering, if a message labeled URGENT doesn't earn a call back in a reasonable amount of time, if it ever happens again should I say SUPER URGENT?

I passed the time yesterday before the extra Dilaudid took effect by clipping some flowers from the garden. This is probably off-limits. I stumbled a couple of times, looking over my shoulder to see if Joe had returned and caught me in the act. The flowers are such good medicine (to look at, not to eat, look at, although we do have nasturtiums, which my mother liked to put in salads.) I'm sure my mother would approve.

Today after having a muffin with Meryl, I took a mini-walk and lay on the couch talking on the phone. I had a deliciously nutritious lunch: two hotdogs with yellow mustard, wavy potato chips and a Coke. I also re-watched a great movie, "Crazy, Stupid, Love." Anyone have suggestions about other good movies to watch?