Friday, May 29, 2009

Two Days in a Row

I'm back. Two days in a row of writing. Wow.

Today is an Ember day for me, but Ron has some blood work to be done the results of which might necessitate a platelet transfusion, so I am needed here. The results of yesterday's blood work at the cancer center were not good. His white blood cell count is only 500 and his platelets are at 30,000. He's been put on an antibiotic, partly as a preventative and partly to go after any viral infection he may already have. He has to wear a mask if he goes into crowds.

He's also been given a 'script for the mouth sores that pretty much go hand in hand with chemo. He can't seem to win for losing this week.

The good news is that his leg lesions don't hurt as much. Three positive steps, inadvertently, have been taken to alleviate the condition, or at least the pain. We may never know which one is helping. The antibiotic from the oncologist may be helping. The pain med is definitely helping, and Ron has stopped taking one of his cholesterol-lowering meds, which may be a culprit in lupus, if that is indeed what he has.

Tooo much information, but I want to have a narrative for my future reference.

Today we go back up to the cancer center for more blood work. Sometimes counts dip one day and are better the next. If the counts continue to be in the toilet on Monday, he'll probably have a platelet transfusion.

Mary Jane, the new washer, was hooked up yesterday and she's working like a champ right now. I am so glad to have a working washer back in the house!!!

Weather - It's a sucky day. Rain and cold.

Random thoughts - I miss Ember and want to bring her down for an overnight but can't do it until, at the very least, Ron's skin condition is markedly improved. Ron's personality has almost returned in full because the pain is less severe in/on his legs.

Thursday, May 28, 2009

It's Been Less Than a Week!

A few minutes of time for writing. It's been less than a week since last I posted. What's wrong with this picture that I'm here so soon? LOL

In the past five days or so, Ron's skin condition has deteriorated rapidly. The prednisone is no longer effective. Whatever it did last week didn't stick. He has been in intense pain. The itching seems milder, but I suspect it's because he is overwhelmed with how much it hurts. We have used creams, cortizone, Bactine -- you name and we've tried it. The problem is that the lesions are caused by something internal. It's not like poison ivy or sunburn which would respond to topical treatments. It's like shingles, only worse. Doctors are still saying it's drug-induced lupus. He still has none of the symptoms of that but does have all the symptoms of Bullous Pemphigoid. I'd never heard of it until I got into heavy research. It's a nasty thing.

Yesterday we returned to the dermatologist so he could take yet more skin for yet another biopsy. The doctor was shocked at how much worse the "condition" is since he saw him last Thursday. He prescribed a pain pill, more prednisone and an antibiotic because Ron's skin is breaking open into wounds and we're afraid of infection. It ain't pretty.

The pain pills may be working. Frankly, Ron isn't sure. He says there is no pain when he's laying totally still, which is a new phenomenon, but there is pain when he moves around. He seems better though. He is talking more, laughing some and generally is more himself.

We picked up my new washer yesterday. Who knew that some day I'd be driving the truck that went to the GE warehouse to get my own washer. ::sigh:: So much for being a lady of retired leisure. I've named the washer Mary Jane because "she" is just that -- a simple plain white washer that will do the job. I suppose if my washer/dryer sat in the living room I'd want something fancy and colorful, but it sits in the cellar. Hmmmm, wonder if they have washing machines the color of cobwebs? The machine probably won't be installed until Friday or Saturday. Ron can't do it so has to call for help.

I had Em Tuesday. We had a good time at the playground in Green Island. There were two other kids there and Em played while I talked to the mom and dad. When it was time to go, Em willingly left without complaint. She also took a two-and-one-half-hour nap in the afternoon. What a gift!!

Tony is bringing his girlfriend, Brianna, to dinner on Sunday. I don't know what prompted his asking, but since it appears their relationship is serious, perhaps it's time. I'll have to do some major cleaning I suppose and then cook! ACK!!! LOL I've seen a couple of pictures of her. She's very pretty and looks much younger than her age, which, apparently, we don't talk about -- age that is -- being that she recently turned 30. Ha! Wait until she's pushing 60.

Tomorrow is another Ember day. It's supposed to rain. Maybe we'll go back to the Children's Museum in Saratoga. On Tuesday she asked if we could go to the "music place.. the moozam place."

Weather - It's gone down hill since the weekend. Tuesday was sunny and barely warm. Yesterday it was downright cold and rainy. It's supposed to rain today and tomorrow too.

Gas prices - They're steady at a way too much price: $2.45 a gallon at Glenmont Cumberland Farm.

Random Thoughts - Will Ron ever feel good enough to take care of the yard? Why is it that this old house never looks clean and neat no matter what I do? Mica's graduation from high school is June 26, and there is a party after at Maureen's. I hope both Ron and I can go.

Saturday, May 23, 2009

Ember Clean and Ready for Bed: Sometime in May

Ember looking somber and serious, knowing it's almost bed time


Another ready-for-bed picture, but she's happier on this evening.
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Long Days....

So it's been a while since I've written. Too many events and issues happening in the space of a week plus a couple of days.

First, Ron had his second chemo treatment yesterday. He is having no negative reaction to the chemo. Yesterday's infusion was only one bag -- Gemzar. It's the easier of the two drugs Ron gets. We would have been out of there in a short while had not the infusion nurses been f*cking around. Long story and one of my posts will be a copy/paste of the narration I'm keeping of how the medical community in general: fucks up; has lost perspective of the individual; has lost empathy; and forgets that it is in the details mistakes originate!

The worst thing that's happened to Ron, and we don't think it's cancer or chemo related, is the "rash." It's more than a rash. It is ... god.. it is a huge problem, mostly on his legs. The minor skin issue that started a year ago -- long before cancer and chemo -- progressed through the months to now being a blistery, weepy, itchy, extremely painful major skin issue that had the dermatologist stumped. To aid in a diagnosis, Ron attended dermatology grand rounds at Albany Med this past Thursday. More than two dozen dermatologist looked at him, taking pictures, poking and proding and oohing and ahhing about how it must hurt.

Do ya think it hurts, doc???? My poor husband has been in agony for 6 days. Up until today, he has been withdrawn, sleeping upwards of 16 hours a day, unable to tolerate anything on his legs unless he was completely still. I've known Ron only three years, but in those months, I have never known him to be so solitary and remote.

The consensus of the doctors from Thursday's show and tell is that Ron has drug-induced lupus. I'm not buying that diagnosis, but at least it gave the dermatologist a reason to prescribe prednisone. Of course a debacle about putting him on the medicine ensued when the oncologist's office would not speak with the dermatologist about it, but that's another post where I vent about fucked-up doctors.

So Ron, who gets prednisone at each chemo treatment, is now on prednisone to help relieve the symptoms of whatever skin problem he has. It's working somewhat. The itch is almost gone and the intense pain is now just regular pain. Pain is relative, of course, so it all still hurts a lot, but since it's less than at the worst, Ron is feeling mentally and emotionally better.

Phew.... I really did a good job of not going on and on about the madhouse our lives have been the past 10 days.

We went to PA a week ago today to visit Ron's daughter and family. Ron was itchy with his "skin issue" but wasn't in pain yet. We had a great visit. The ride down was particularly lovely because instead of going south on the Thruway to I-84, we took the scenic route down Route 30 to the PA border. It is soooooooo gorgeous!!

I had Ember Rois two days this week: Tuesday and Thursday. She was a golden girl most of the time. Her protests when leaving parks and playgrounds are minimal and though she may cry, she holds my hand and is more cooperative than not. I told her I was very proud of the way she cooperated, and she said, "But I did cry, Grandma. I wasn't a good girl." I told her she gets a "good girl" from me because she didn't cry much nor did she struggle when it was time to go.

Weather - We've had great weather this week. It was definitely sandal and short weather. Today is a bit cooler with a good breeze, but it was sunny all day.

Gas prices - They continue to rise. Cumberland Farm in Glenmont is $2.45 a gallon.

Random Thoughts - Why do doctors think it's OK to walk away from a patient in pain? When will my washing machine be fixed? Ironic that my husband sells and services GE/Hotpoint appliances but is too ill to fix our own machine.

Thursday, May 14, 2009

Chemo Treatment #1

Today Ron had his first chemo treatment. We both think it went well. It was three hours from the time of arrival at 10:45 AM for blood work until 1:40 PM when we walked out the door. There were some problems at the center: a computer crashed, and it was very busy with lots of IV alarms going off, both of which probably made the "visit" at least 30 to 45 minutes longer than it might have been.

So far Ron has had no reaction to the chemo or the other couple of drugs given, one for nausea/vomiting and the other to build up red blood cells. He is tired but I suspect that's more from being a newbie at the center and the initial rush of blood work, IV insertion, and just getting to know the routine. Of course, it is a long day when taking the commute time into consideration, which adds close to two hours to the time.

Ron's next treatment is Friday the 22nd. I hope it goes as well as today's.

Tomorrow is an Em day. She was pushing buttons Tuesday, but if I can keep things light and not lose my patience, she calms down quickly. Tomorrow I plan on going to the Children's Museum in Saratoga Springs. If the carousel is running in Congress Park, we'll take a spin.

Saturday morning, if Ron feels well, we're going to visit Beth and her family in Pennsylvaina. Each grandchild has a game on Saturday: two baseball games and one softball game. The weather is kind of iffy for both Saturday and Sunday. No need to bring sandals or crop pants. Sneaks and jeans will do just fine.

Weather - Today was not nice. It was rainy, chilly and very windy!

Gas prices - They have risen an avearge of 79 cents in a month around the Capital District. If that isn't a rip off, I don't know what is.

Random thoughts - I wonder if the woman we met today at the cancer center will make it. This is her third trip down Cancer Lane. She's had surgery and radiation. The only thing left is chemo. If it doesn't work, there are no other options. I like the nurse who tended to Ron today. I wish we could have her every time. I hope Ron listens to his body and does not overdue working at the resorts.

Wednesday, May 6, 2009

40 days or 40 years

Ron's biopsy was positive. The word is now official that the cancer has spread from his bladder via the blood stream. We expected this. He starts chemo on May 14th. The chemo cycle is three weeks, with chemo once a week for two weeks then one week off, during which time blood will be drawn for testing. There will be four of these cycles, and at the end of the 12 weeks, a CT scan will be done to determine if the chemo has deterred the spread.

As previously told to us by the doctor, this is not a cure. This cancer cannot be cured, cut out or eliminated. Chemo treatments are just that --- treatments which, with any luck at all, will keep the cancer in abeyance.

For how long in abeyance? We don't know. The doctor didn't offer his educated guess and we did not ask. It was an unspoken given that the first major round of chemo -- the four cycles of two weeks on/one week off -- will give us an idea as to the prognosis.

Ron continues to live his life as if he is 40 years old and will live another 40 years. This is how Ron always lives his life, whether he has cancer or not. He is doing exactly what he would do if he wasn't potentially on the brink of death in a few months. Tomorrow he's going to camp for four days, returning earlier than usual only because we have "chemo school" to attend Monday.

Now I don't believe that Ron is on the edge of death. I think that this cycle of chemo will be effective and probably the next cycle, whenever that is. I do think, though, that each successive cycle, whether it's one additional or two or three, will be less effective and we'll see the cancer spreading quicker each time. Of course since I don't know what I'm talking about, other than from a lay person's perspective and experience, I could be totally wrong. Whatever, today Ron is feeling great and you'd never know by looking at him that there are several hot spots of cancer in his body.

I've got a cold. Itchy sneezy nose, dry throat, and general blahs. Em has it also. I hope Ron doesn't catch it.

Tony's flu has flown away, and he's feeling much better. He went nine days without seeing Em so this week he has her every night into Saturday morning. He is such a good parent. He takes Em's attitudes and 3-year-old boldness in stride but directing it so that she doesn't go overboard. I am very proud of him.

Tomorrow night I meet "the girls" for supper at Applebee's in Glenmont. I put it out there that it would be really nice if we could do closer to my home than not, and they agreed.

Friday I have Ember. I think the rain will stop long enough for us to get some outdoor time. if not, I may take her to the Children's Museum in Saratoga Springs.

Saturday Michele and Tony have invited me to have lunch at Michele's house for Mother's Day. Each Mom's Day has been different ever since they returned from North Dakota. I'm very pleased to be spending time with them.

In between all this, I'll be cleaning, doing laundry and general puttering around. I haven't found the heart or desire to start spring cleaning. It may hit me or it may not. ::shrug:: The curtains can stay dusty until the fall if that's the way it goes. My house is cleaned regularly so spring cleaning doesn't do anything in particular that anybody would notice.

Weather - It's been chilly and damp. Of course, if we had 55 degree weather in January it would be warm, but with no sun and showers, 55 is unpleasant.

Saturday, May 2, 2009

A Weekend of Fun!!

I hope it will be fun this weekend. First we have a very casual wedding to attend. A long-time friend of Ron's, who is also a senior, is marring a woman from Denver, CO. They had a ceremony out there for her family and friends and are having one here for his friends and family. It is very casual with a casual reception of sorts in the church hall after.

We're hoping we can leave there by 3 to head over to Mystic, CT. It's close to a four-hour drive from here, but worth it to get away. Ron will attend a knife show on Sunday, and I'll wander around town and go to the aquarium.


As the pics below show, Em had a good time on her visit. I picked her up late Wednesday afternoon, after taking Tony to the doctor (he has Type B Flu and was very ill). It made sense to bring her down Wednesday to avoid me having to drive up there just 13 hours later on Thursday morning to bring her down.

Em was wonderful! She was cooperative, happy and generally a good kid. She loves tromping in the woods and loved tossing stones into the creek. This summer I'll let her go wading in the water to cool off.

Got my hair cut yesterday. Em went with me and was perfect. My hairdresser, as well as the others, said that there are very few children who come there who are as good as she was. I can't imagine taking a child to a hair salon who couldn't behave for 30 minutes. It's not fair to anybody.

Michele drove down about 3 yesterday to take Em home. Just before they left, half a dozen deer wandered through the backyard, grazing as they went. Em is so thrilled to see them and was especially thrilled to share them with her mommy.

I'm getting anxious to hear the results of Ron's biopsy. I want to know so we can do what has to be done to slow the progression. The doctor has said it can't be cured, but it can be treated.

Weather - The past couple of days have had temps in the high 60s with some sun. Em and I were able to play outside for hours Thursday, but it wasn't as nice Friday.

Exericise - I've had little time or desire to exercise. My lower intestinal problem hasn't gone completely away and it often makes me feel drained and exhausted; hence no energy for doing special exercising.

Cobwebs from the cellar and random mind thoughts - Will we be able to get out of town as early as I'd like? Will it rain in Mystic while we're there? Wonder if I'll find the perfect birthday card for Ron, whose birthday is Monday. Will his chemo treatments be on a day that works best for our weekly schedule?

Friday, May 1, 2009

Em's Visit in Late April: Riding the LawnMower


This is the lawnmower that last year sent Em SCREAMING into the house out of fear. Now she loves riding with Grandpa.





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Em's Visit in Late April: In the Woods

Em discovered she loves tromping through the woods.




Tossing stones into the creek.

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Em's Visit in Late April


On a bug-catching mission on the upper terrace.



Something taller than she is, but not by much!



On the driveway leading to the back garage and the "forest," as Em calls it. She loves the woods!



On the path beyond the back garage, in the "forest," leading to the creek. On the other side of the water is the cemetery.
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Late April in our Backyard




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