Being somewhere you've never been before, you're not sure how it's supposed to look, so it's hard to settle into a routine until you sense it's there. That's kind of what all this medical stuff with Steve is like for me (and for him, too, I'm sure).
Steve had a follow-up visit for his small toe on Monday, May 13, then stopped by the lab to get his blood drawn. We got back home about 2:30 in the afternoon and got a call from his primary care physician: Get back to the ER, your platelet count is almost nonexistent. So we schlep back to the ER in Long Beach and Steve gets admitted for transfusions. Three transfusions of whole blood and one of platelets later (on Wednesday morning), they discharge him.
The next day we have appointments with Dr. House (the psychologist) and Dr. Klein (the oncologist). We stop at the lab again, and Dr. Klein says the platelets are low again and has Steve go into the infusion clinic for a transfusion of platelets on Friday. Since I already have a dentist's appointment on Friday, Bob (a friend of ours), takes Steve to the hospital. He's home by the time I get back from the dentist, and even though I/we are supposed to be asking people for help, I still feel guilty about not taking Steve myself.
He will get to return the favor next week: On Wednesday I'm going in for oral surgery to remove a couple of residual roots prior to getting fitted for my partial. They'll use full anesthesia, so I need someone to drive me home. I'm hoping it will feel good for Steve to be the caregiver and me be the patient.
Things are kind of whirling quietly on the business front. I have started the website for Ray and Tony and their antiques/art gallery. We're starting out simple, but I'm designing it with a mind to putting all of their inventory online (which will be quite a chore, believe me; they have loads of great stuff). I think the job is going to carry on long after the site is up. I think we will have to have some lessons in good photography and photographing flat images (like paintings) for best reproduction. Ray wants to set up a photo booth capable of shooting everything from jewelry to large-scale furniture and sculpture. Should be a challenging and enjoyable client.
Yesterday we went to an orientation meeting for the Cancer Support Community here in Pasadena (formerly known as the Wellness Community). We both signed up for support groups, the first of which is tomorrow evening. We arrived about 11 a.m. and got out of the intake interview around 1:15. We stopped for lunch on the way back home and, soon after arriving, the doorbell rang and UPS dropped off a box.
You'll recall Steve signed up with the Neptune Society earlier this month. Well, the box we received had his urn in it, as well as other "momento" articles. It was super creepy. Neither of us opened it, and it went into the upstairs closet, to be dealt with at some point down the road. I know it was a blow for Steve, right after the visit to the support center. Even in our everyday life, death is slowly enfolding an ever-smaller space around us, and while the world remains mundane, an ultimate and irrefutable change is on the horizon: maybe months, maybe years, but inevitably there.
This, too, will become a familiar part of this new way of living.
Wednesday, May 22, 2013
Friday, May 10, 2013
The New Normal
Things are insane in the new normal; they are bipolar at times, delusional at others, and downright psychotic just a smidgen here and there. It certainly is busier than the old normal.
I'm looking over the calendar for the last week here, and I've got an appointment for me with the oral surgeon, a meeting with the dog rescue group, a meeting with a cleaning service, a meeting with the Neptune Society, a board meeting for the dog group, half-day house cleaning, and appointments with primary care, pulmonary clinic and the nutrition clinic. What's not on the calendar is the bizarre response from the doggie group and more tracking down insurance company mistakes.
Ted, the guy I've been working with, is a board member in this rescue group that specializes in golden retrievers. We've both been on the same page as far as the redesign for the group: they are doing their first major upscale fundraiser and a facelift in their graphic design—group logo as well as fundraiser logo—to raise their graphics and branding to a professional level of sophistication. (They are currently printing out their own business cards on their inkjet printers).
So I spend several hours working on a logo concept that seemed really flexible and workable to me. I went out to Somis to the board meeting on Sunday with Ted and gave my presentation. Dead. The meeting went on for another three and a half hours, and we stopped at the fancy restaurant which was partnering with the group on the fundraiser and providing all the food.
To make a long story short, e-mails between myself and the president of the group went back and forth, and by10 a.m. the next morning, she was giving me the big brush-off: We don't need your services. Of course, by then I was in total concurrence in not wanting to work with her in particular, as she had been quite venomous in her objections to the concept of any redesign (even though their current logo has no viable image file from which to work: There's the jpg for the web that is also used to print out the business cards. Haven't talked to Ted about all this yet, but I think he's just as floored as I am.
Anyway, enough wasting energy on the negative. I'm now working with Ray and Anthony at Cable International, launching a website for them in the next few weeks. I also have a site redesign for Joy on deck and a couple of other folks in the organizing phase right now, so I'm hoping to see stuff happening down the line.
Wednesday, I got a call from the oral surgeon saying they can't schedule my surgery because Delta Dental has my birthdate year as 1954 and the surgeon has it as 1953, which is correct. This surfaced back in October with my current dentist when she tried to submit a claim. It took several days to get things right, but obviously the old date is still floating around in their system. I called them and, after going back and forth a coupla times, got everything right as rain. I really want to get this dental work over and the partial in my head so I don't look like Cletus the Slack-Jawed Yokel from The Simpsons.
Wednesday, I got a call from the oral surgeon saying they can't schedule my surgery because Delta Dental has my birthdate year as 1954 and the surgeon has it as 1953, which is correct. This surfaced back in October with my current dentist when she tried to submit a claim. It took several days to get things right, but obviously the old date is still floating around in their system. I called them and, after going back and forth a coupla times, got everything right as rain. I really want to get this dental work over and the partial in my head so I don't look like Cletus the Slack-Jawed Yokel from The Simpsons.
As for Steve, his biggest challenge right now is being a healthy sick person, which is not an easy construct to fabricate. On his last chest draining (which was today), we actually tapped him out and under 800 milliliters, so that's slowly clearing up. His toe is improving, dead skin peeling off, healthy tissue growing back. The "little stuff" is beginning to resolve itself.
The second round of chemotherapy last week was a little stronger than the first, and Steve was wiped out for a couple days afterward. And the side effects are fairly minimal at this point. We'll be seeing the oncologist next Thursday to get an update on how treatment so far, then the third infusion is scheduled the week after that.
The second round of chemotherapy last week was a little stronger than the first, and Steve was wiped out for a couple days afterward. And the side effects are fairly minimal at this point. We'll be seeing the oncologist next Thursday to get an update on how treatment so far, then the third infusion is scheduled the week after that.
So I'm finding it realistic to plan just about seven days in advance and no further. One nice thing I'm finding out about the new normal, dizzy and disruptive as it is: there seems to be time for everything that needs getting done. That's a special kind of blessing.
Thursday, May 2, 2013
Spring Thaw Piggie
Well, Steve has most of his littlest left toe with him still.
After he was admitted that evening, I came home, got really drunk (which for me is two and a half drinks) and fell a apart. Special and specific people were phoned, and I wrote the previous blog (which I've updated so it makes just a bit more sense) in the in-between times.
Steve was on the 8th Floor this time around, which is not as insane nor crowded and disorienting as on the 10th Floor: the people seem less beholden to the medical data grid but still adhere to the machine built into it all.
The upshot is, they cut out the tiny icky part of the wee-wee toe, loaded him up on antibiotics and I picked him up two days later. The toe's healing nicely and I'm starting to ride him again about building stamina.
To his credit, he's jumped into it when he could have passed, like doing the shopping with me today, which really pushed him, but he recovered quickly. I tossed out the idea of going to Disneyland for a day, shooting for that as a comfortable stamina goal. He didn't seem to balk at the idea, so Cinderella's Castle may be in our near future; more likely: Cars Land.
On the studio front, I sealed the deal with one of the two clients I interviewed with last week (the antiques and artwork collector), and I'm meeting with the second one (a Golden Retriever rescue organization) again this Friday (right after my dental consult in the morning).
And suddenly all of this regurgitation of information seems terribly vulgar, like describing bowel movements to the uncomfortable observer.
But that's kind of the threshold of senior citizenship in our society; that point where health becomes more of a declining concern and less of a gift. You're thinking about diapers and walkers to get through the day once again. But now you're not a baby; you have your own thoughts and prejudices and apprehensions to deal with as well as everyone else's.
The first time you admit at the grocery store that, yes, you do need help out to your car with your groceries, it happens: a bumper sticker on your forehead, adhered for life, which simply says "elderly," and labels you until death.
I saw a woman, probably in her 90s, using two canes to drag herself from the car to the grocery cart at the front of the store. It might have taken her forever, but she's going to the store to get the things she needs to stay alive. If she can't get the help, she'll get there on her own. Or maybe she just doesn't need the help.
I haven't had any kind of nicotine for about 24 days, by my reckoning. I've had urges to smoke, but I just can't give up being nicotine free. I've decided that's part of the rest of my life.
After he was admitted that evening, I came home, got really drunk (which for me is two and a half drinks) and fell a apart. Special and specific people were phoned, and I wrote the previous blog (which I've updated so it makes just a bit more sense) in the in-between times.
Steve was on the 8th Floor this time around, which is not as insane nor crowded and disorienting as on the 10th Floor: the people seem less beholden to the medical data grid but still adhere to the machine built into it all.
The upshot is, they cut out the tiny icky part of the wee-wee toe, loaded him up on antibiotics and I picked him up two days later. The toe's healing nicely and I'm starting to ride him again about building stamina.
To his credit, he's jumped into it when he could have passed, like doing the shopping with me today, which really pushed him, but he recovered quickly. I tossed out the idea of going to Disneyland for a day, shooting for that as a comfortable stamina goal. He didn't seem to balk at the idea, so Cinderella's Castle may be in our near future; more likely: Cars Land.
On the studio front, I sealed the deal with one of the two clients I interviewed with last week (the antiques and artwork collector), and I'm meeting with the second one (a Golden Retriever rescue organization) again this Friday (right after my dental consult in the morning).
And suddenly all of this regurgitation of information seems terribly vulgar, like describing bowel movements to the uncomfortable observer.
But that's kind of the threshold of senior citizenship in our society; that point where health becomes more of a declining concern and less of a gift. You're thinking about diapers and walkers to get through the day once again. But now you're not a baby; you have your own thoughts and prejudices and apprehensions to deal with as well as everyone else's.
The first time you admit at the grocery store that, yes, you do need help out to your car with your groceries, it happens: a bumper sticker on your forehead, adhered for life, which simply says "elderly," and labels you until death.
I saw a woman, probably in her 90s, using two canes to drag herself from the car to the grocery cart at the front of the store. It might have taken her forever, but she's going to the store to get the things she needs to stay alive. If she can't get the help, she'll get there on her own. Or maybe she just doesn't need the help.
I haven't had any kind of nicotine for about 24 days, by my reckoning. I've had urges to smoke, but I just can't give up being nicotine free. I've decided that's part of the rest of my life.
Monday, April 22, 2013
Frostbite Without the Freeze
Hospitals are evil things. Doctors are forces of blackness and evil: The higher their learning, the more profound their dark intent. For, the higher their learning, the farther from humanity they fly: the patient becomes mere man-meat, with no humanity attached it him or her at all.
Take a toe. A little toe. The tiniest toe: the "wee-wee-wee all the way home" toe. Give it the tiniest of infections and place it on an inpatient ward of a hospital: Everyone will ignore it. Everyone will assume its benign nature. And, in a week or two, it will be rotting into its own hell; making life intolerable for its owner, and buckling under the immunosuppressant chemotherapy it is subjected to until it looks like frostbite.
I remember frostbite: I had seen it in Alaska in the dead of winter: Folks subjected to long hours of winter's cold; their extremities with flesh turning black from lack of fluid nutrients.
That's the color flesh I saw in Steve's small toe ("wee-wee-wee") on Monday morning, before I went to my chiropractor's appointment. It was the color we saw after me appointment with a new client at 2 p.m. It was the color the ER physicians saw when we drove to Long Beach to have his foot checked because, having seen frostbite before, I knew that if we didn't get him to a physician, he might lose his foot.
I hate hospitals. They cure but they make their patients insane. I hate leaving the husband I love at the mercy of those hellish healers. My last words to him upon leaving: Be an asshole. Complain about everything. Ring them 10 times an hour. Be such a pain in the ass that they will want nothing more than to cure you and get you the hell out of their sight.
On an outpatient basis, they are my heroes. On an inpatient basis, they are the medicinal incubi and succubi of The Test and Numbers and Values: as for their inpatients' souls, the data say the word is spelled incorrectly, and they are located on the bottom of the foot. It's a pity they paid so little attention to these extremities the last time they had him in their clutches.
Thank God for the spiritual healers we have on our side for this fight, or all would be lost: Joy, meet Robin; Robin, meet Joy.
Take a toe. A little toe. The tiniest toe: the "wee-wee-wee all the way home" toe. Give it the tiniest of infections and place it on an inpatient ward of a hospital: Everyone will ignore it. Everyone will assume its benign nature. And, in a week or two, it will be rotting into its own hell; making life intolerable for its owner, and buckling under the immunosuppressant chemotherapy it is subjected to until it looks like frostbite.
I remember frostbite: I had seen it in Alaska in the dead of winter: Folks subjected to long hours of winter's cold; their extremities with flesh turning black from lack of fluid nutrients.
That's the color flesh I saw in Steve's small toe ("wee-wee-wee") on Monday morning, before I went to my chiropractor's appointment. It was the color we saw after me appointment with a new client at 2 p.m. It was the color the ER physicians saw when we drove to Long Beach to have his foot checked because, having seen frostbite before, I knew that if we didn't get him to a physician, he might lose his foot.
I hate hospitals. They cure but they make their patients insane. I hate leaving the husband I love at the mercy of those hellish healers. My last words to him upon leaving: Be an asshole. Complain about everything. Ring them 10 times an hour. Be such a pain in the ass that they will want nothing more than to cure you and get you the hell out of their sight.
On an outpatient basis, they are my heroes. On an inpatient basis, they are the medicinal incubi and succubi of The Test and Numbers and Values: as for their inpatients' souls, the data say the word is spelled incorrectly, and they are located on the bottom of the foot. It's a pity they paid so little attention to these extremities the last time they had him in their clutches.
Thank God for the spiritual healers we have on our side for this fight, or all would be lost: Joy, meet Robin; Robin, meet Joy.
Sunday, April 21, 2013
Drain-Train Back-Crack Tooth-Uncouth Web-Celeb
Steve’s been home and out of the hospital for 10 days now, so things are starting to revert to the new normal, which is a Godsend for us both.
The biggest beat to the new routine is pleural draining. This sounds really creepy and quasi-surgical, but it’s really quick, painless and tidy, if done correctly: Just removing the old dressing, hooking up the chest catheter (a small plastic tube with a one-way valve and a clamp) to the drainage bag, initiating the syphon (with a small bulb on the bag’s tube) and drawing off about a liter of fluid: Clamp the line, sterilize the catheter end, slap on a new dressing and you’re done. We repeat this every three to five days, and the pressure has been lessening each time, so we’re getting a handle on the condition and Steve’s lung capacity is stabilizing.
The only other real health problem is the small toe on his left foot: Since he has the catheter, he’s taking sponge baths at the sink rather than showering, so his feet haven’t been getting washed regularly, and a nasty fungal infection has taken over between the last two toes on his left foot. It’s also drying out and cracking the callouses, and the whole foot is getting involved. On advice from his primary physician’s nurse practitioner, we’ve started twice-daily foot baths with gauze between the toes to dry them out.
This last Thursday we went down to the VA on Long Beach and Steve had appointments with his psychologist, primary care physician, oncologist and pulmonary care technician. We got gauze, saline and pain relievers from the primary care physician for the foot, and about a dozen of the draining kits from the pulmonology department. By the time we left the pharmacy department on our way to the car, Steve had a BIG box on his lap full of all this stuff. I told the pharmacist, “We’re opening our own hospital.” She thought that was pretty funny.
We’re also getting back to routine activities other than just watching the television. I’m trying to get Steve out and walking around at least twice a week, and walking up and down the stairs at home at least a half dozen times a day. Even with the cancer, his health is really good, so keeping his stamina up is important. Every time he wears out and he flops down, I say, “Time yourself and see how long it takes to get back your breath.” That way, he can see his stamina is improving.
As for me, I’m going in several directions, healthwise.
One of my fellow chamber of commerce members, Dennis Buckley, is a chiropractor who has written a couple of books, and I’ve done two book covers for him so far. After doing the last one, I asked him if he would be willing to trade out some treatments, and he agreed. It was the best decision I could have made.
Sitting at the computer for hours a day, my back and neck were a mess. After my first treatment with him, I was able to turn my neck around and really look behind me when changing lanes on the freeway. I’ve also noticed that my shoulders don’t droop like they used to, and my posture is getting better without even thinking about it. His associate, Harrison Darling, has given me a couple simple neck exercises that have helped keep my back loose and supple.
On the health downside, I had a damaged front tooth that broke off last week. There’s no pain, and it was in need of attention, but I had run out of money and was waiting for my dental insurance to renew before proceeding. When Steve’s health issues emerged, the dentist was put on the back burner, but no longer: with the tooth missing, my smile doesn’t exactly charm.
I’ve got an appointment with my dentist on Tuesday, and I’m going to propose taking the plunge: remove the six remaining maxillary teeth and fit me with an upper denture. (I would prefer this to a series of root canals and caps, partial dentures and their concurrent costs.) Also, it is a procedure I can afford with my present insurance coverage.
On the upside for both of us, we stopped smoking in early March (the 4th for Steve, the 6th for me). I have been nicotine-free for two weeks now (no patches or gum). I don’t have the urge to smoke, but I do have the urge to do “something” in those periods when what I would do was smoke: after a meal, getting into the car, taking a break from work, with the first cup of coffee in the morning. I’m not sure whether it’s worth my time to come up with substitute things, or whether I should just let those behaviors drop away over the next couple of weeks.
On the design studio front, I finally got my remaining 1500 brochures labeled, stamped and into the mail. The mailing list I purchased was a good one, because it’s been almost a week and I haven’t gotten and returns in the mail. I’m finally down to a couple hundred of the brochures, which means I’ll need to design something new soon for the next mail campaign.
As a result of the mailing, I have three appointments next week with potential clients (an antiques dealer wanting a website, a Realtor wanting a website redesign and a golden retriever rescue organization gearing up for an upscale fundraiser in September and needing graphic coordination). This of course is on top of a few ongoing clients I presently have, plus several clients planning projects in the next few months.
Also, Paul Little, the CEO of the Pasadena Chamber of Commerce, let me know that they want me to head up not only the design but also the production of their directory next year, so that is another major project slated for the second half of the year. Now, if I can just get Martha over at ASC to hire me to design those two biographies they’re planning on publishing, things will be golden. And I really love working with her.
As a business person, I have to say that it looks like the recession is finally moving into the past, and people are more confident about planning for the future without feeling the need of an economic safety net in case the whole thing collapses again.
The biggest beat to the new routine is pleural draining. This sounds really creepy and quasi-surgical, but it’s really quick, painless and tidy, if done correctly: Just removing the old dressing, hooking up the chest catheter (a small plastic tube with a one-way valve and a clamp) to the drainage bag, initiating the syphon (with a small bulb on the bag’s tube) and drawing off about a liter of fluid: Clamp the line, sterilize the catheter end, slap on a new dressing and you’re done. We repeat this every three to five days, and the pressure has been lessening each time, so we’re getting a handle on the condition and Steve’s lung capacity is stabilizing.
The only other real health problem is the small toe on his left foot: Since he has the catheter, he’s taking sponge baths at the sink rather than showering, so his feet haven’t been getting washed regularly, and a nasty fungal infection has taken over between the last two toes on his left foot. It’s also drying out and cracking the callouses, and the whole foot is getting involved. On advice from his primary physician’s nurse practitioner, we’ve started twice-daily foot baths with gauze between the toes to dry them out.
This last Thursday we went down to the VA on Long Beach and Steve had appointments with his psychologist, primary care physician, oncologist and pulmonary care technician. We got gauze, saline and pain relievers from the primary care physician for the foot, and about a dozen of the draining kits from the pulmonology department. By the time we left the pharmacy department on our way to the car, Steve had a BIG box on his lap full of all this stuff. I told the pharmacist, “We’re opening our own hospital.” She thought that was pretty funny.
We’re also getting back to routine activities other than just watching the television. I’m trying to get Steve out and walking around at least twice a week, and walking up and down the stairs at home at least a half dozen times a day. Even with the cancer, his health is really good, so keeping his stamina up is important. Every time he wears out and he flops down, I say, “Time yourself and see how long it takes to get back your breath.” That way, he can see his stamina is improving.
As for me, I’m going in several directions, healthwise.
One of my fellow chamber of commerce members, Dennis Buckley, is a chiropractor who has written a couple of books, and I’ve done two book covers for him so far. After doing the last one, I asked him if he would be willing to trade out some treatments, and he agreed. It was the best decision I could have made.
Sitting at the computer for hours a day, my back and neck were a mess. After my first treatment with him, I was able to turn my neck around and really look behind me when changing lanes on the freeway. I’ve also noticed that my shoulders don’t droop like they used to, and my posture is getting better without even thinking about it. His associate, Harrison Darling, has given me a couple simple neck exercises that have helped keep my back loose and supple.
On the health downside, I had a damaged front tooth that broke off last week. There’s no pain, and it was in need of attention, but I had run out of money and was waiting for my dental insurance to renew before proceeding. When Steve’s health issues emerged, the dentist was put on the back burner, but no longer: with the tooth missing, my smile doesn’t exactly charm.
I’ve got an appointment with my dentist on Tuesday, and I’m going to propose taking the plunge: remove the six remaining maxillary teeth and fit me with an upper denture. (I would prefer this to a series of root canals and caps, partial dentures and their concurrent costs.) Also, it is a procedure I can afford with my present insurance coverage.
On the upside for both of us, we stopped smoking in early March (the 4th for Steve, the 6th for me). I have been nicotine-free for two weeks now (no patches or gum). I don’t have the urge to smoke, but I do have the urge to do “something” in those periods when what I would do was smoke: after a meal, getting into the car, taking a break from work, with the first cup of coffee in the morning. I’m not sure whether it’s worth my time to come up with substitute things, or whether I should just let those behaviors drop away over the next couple of weeks.
On the design studio front, I finally got my remaining 1500 brochures labeled, stamped and into the mail. The mailing list I purchased was a good one, because it’s been almost a week and I haven’t gotten and returns in the mail. I’m finally down to a couple hundred of the brochures, which means I’ll need to design something new soon for the next mail campaign.
As a result of the mailing, I have three appointments next week with potential clients (an antiques dealer wanting a website, a Realtor wanting a website redesign and a golden retriever rescue organization gearing up for an upscale fundraiser in September and needing graphic coordination). This of course is on top of a few ongoing clients I presently have, plus several clients planning projects in the next few months.
Also, Paul Little, the CEO of the Pasadena Chamber of Commerce, let me know that they want me to head up not only the design but also the production of their directory next year, so that is another major project slated for the second half of the year. Now, if I can just get Martha over at ASC to hire me to design those two biographies they’re planning on publishing, things will be golden. And I really love working with her.
As a business person, I have to say that it looks like the recession is finally moving into the past, and people are more confident about planning for the future without feeling the need of an economic safety net in case the whole thing collapses again.
Thursday, April 11, 2013
These Two Dancers Walk Into a Barre…
Steve had his first chemotherapy infusion session today. It took about 2-1/2 hours, and he doesn't seem to have suffered any immediate side effects from the procedure. It is finally the beginning of his outpatient treatment, which we have both been wanting to start for weeks now.
At the oncology consultation with Dr. Klein (which occurred right after the last blog entry), Steve was having trouble getting breath, so she ordered a chest X-ray and a blood panel: We could stop at Radiology and then at the Phlebotomy Lab for those tests, then go to the Emergency Room, where they would take care of the breathing problem.
The "solution" at ER was Steve readmitted to the hospital (something neither of us wanted). It took the pulmonologists, cardiothoracic surgeons and attending physicians a full week of tests and prodding and poking to all agree that it was wise and safe to place a chest tube into Steve to draw off the excess pleural fluid to help improve his breathing.
So, after being admitted on March 27, the procedure was done on April 2. He was released on the 3rd, and on the 4th we got to drive back down to Long Beach for a pulmonary consult so the doctor could show us how to drain the fluid and rebandage the site afterwards. All very straightforward and far preferable to having Steve trot down to Long Beach for a weekly procedure.
Hospitals are great places of curing, but not for healing. Home is where you heal. By the time Steve got home on the 3rd, his health, both physical and mental, was adversely affected by the hospital stay. It took a week at home to get back to normal and regain some of his physical stamina. He's now back to going up and down stairs, going out and picking up the mail, helping with the dishes, and I keep pushing him to keep expanding on that stamina: Spending four of the last six weeks in hospital beds can do horrible things to a person's body and spirit.
On the business front, I have taken some of this time to finish folding up the remaining 2,000 brochures from the printing I did last year when I started the business. They've been sitting in boxes under the dining room chairs, so I decided I should do something positive with them and do a little promotion: I bit the bullet and purchased a business-to-business mailing list online, then used it to set up a 1,500-name mailer list.
Last year, I sent out the brochure (a square) with a 6"x9" Post-It pad with the company logo. I had to put them in an envelope, since you cannot send out a square piece as a bulk mail item, only as first class.
I sat down and did the math, and realized that sending the square brochures as first-class mail was actually cheaper than going the envelope route with bulk mail charges. And, besides, the shape of the brochure emphasizes the shape of my logo, so it makes sense to send them that way. And how many square pieces of mail do you get?
So, we now have nearly 500 mailers ready to go into the post this week, and 1,000 more ready for stamps and mailing labels. I figure if I send them out in three batches of 500, it won't be too overwhelming. Hopefully, that will kick start the business, which is not stagnant now, but I don't have any really big projects ongoing at the moment, so income dribbles in here and there.
Whatever business does come down the pike will have to be worked into Steve's treatment program and retirement plans; that's a given. He's filed online for his Social Security and SDI and handicapped parking placard, so we'll be up and running in a couple weeks. And he already belongs to AARP, so we're all set.
On the personal front, I stopped smoking on March 7 (Steve stopped on the 5th) and I stopped the patches on April 5. I tried the gum for a day or two, but it really doesn't do anything for me, so I quit using it on Sunday. This means that I have been nicotine-free for nearly four days straight (the first time in 44 years).
There was one point, while Steve was in the hospital, that I went off the patches and smoked a pack over a two-day period. The upshot of the experience was actually positive, since I got no real pleasure out of the act of smoking; it was just another nicotine delivery system, so I was back on the patches the next day.
I'm getting "the urge" three or four times a day, but it doesn't translate into a desire to obtain cigarettes and smoke them; it's an abstract urge to "do something" (which is how 1,500 brochures got folded!). And if the cravings get bad enough, I can revert to the gum. I don't think that will happen, though: I just want the nicotine out of my system and out of my life.
On the health front, my blood pressure, both systolic and diastolic counts, have dropped 10-20 points, (now about 124/68 and my resting pulse is down from 86 to 64. I have gained back five or six of the 27 pounds I lost last year, but I can keep an eye on that: With everything else that's going on right now, I'm not going to throw dietary constraints on myself while trying to cook properly for Steve.
So here's hoping that the chemo will be effective as hell and that Steve will tolerate the regimen well and we can get really aggressive in managing this disease. As they say: So far, so good.
Because, to be honest, I want to get to some of that fun retirement stuff.
At the oncology consultation with Dr. Klein (which occurred right after the last blog entry), Steve was having trouble getting breath, so she ordered a chest X-ray and a blood panel: We could stop at Radiology and then at the Phlebotomy Lab for those tests, then go to the Emergency Room, where they would take care of the breathing problem.
The "solution" at ER was Steve readmitted to the hospital (something neither of us wanted). It took the pulmonologists, cardiothoracic surgeons and attending physicians a full week of tests and prodding and poking to all agree that it was wise and safe to place a chest tube into Steve to draw off the excess pleural fluid to help improve his breathing.
So, after being admitted on March 27, the procedure was done on April 2. He was released on the 3rd, and on the 4th we got to drive back down to Long Beach for a pulmonary consult so the doctor could show us how to drain the fluid and rebandage the site afterwards. All very straightforward and far preferable to having Steve trot down to Long Beach for a weekly procedure.
Hospitals are great places of curing, but not for healing. Home is where you heal. By the time Steve got home on the 3rd, his health, both physical and mental, was adversely affected by the hospital stay. It took a week at home to get back to normal and regain some of his physical stamina. He's now back to going up and down stairs, going out and picking up the mail, helping with the dishes, and I keep pushing him to keep expanding on that stamina: Spending four of the last six weeks in hospital beds can do horrible things to a person's body and spirit.
On the business front, I have taken some of this time to finish folding up the remaining 2,000 brochures from the printing I did last year when I started the business. They've been sitting in boxes under the dining room chairs, so I decided I should do something positive with them and do a little promotion: I bit the bullet and purchased a business-to-business mailing list online, then used it to set up a 1,500-name mailer list.
Last year, I sent out the brochure (a square) with a 6"x9" Post-It pad with the company logo. I had to put them in an envelope, since you cannot send out a square piece as a bulk mail item, only as first class.
I sat down and did the math, and realized that sending the square brochures as first-class mail was actually cheaper than going the envelope route with bulk mail charges. And, besides, the shape of the brochure emphasizes the shape of my logo, so it makes sense to send them that way. And how many square pieces of mail do you get?
So, we now have nearly 500 mailers ready to go into the post this week, and 1,000 more ready for stamps and mailing labels. I figure if I send them out in three batches of 500, it won't be too overwhelming. Hopefully, that will kick start the business, which is not stagnant now, but I don't have any really big projects ongoing at the moment, so income dribbles in here and there.
Whatever business does come down the pike will have to be worked into Steve's treatment program and retirement plans; that's a given. He's filed online for his Social Security and SDI and handicapped parking placard, so we'll be up and running in a couple weeks. And he already belongs to AARP, so we're all set.
On the personal front, I stopped smoking on March 7 (Steve stopped on the 5th) and I stopped the patches on April 5. I tried the gum for a day or two, but it really doesn't do anything for me, so I quit using it on Sunday. This means that I have been nicotine-free for nearly four days straight (the first time in 44 years).
There was one point, while Steve was in the hospital, that I went off the patches and smoked a pack over a two-day period. The upshot of the experience was actually positive, since I got no real pleasure out of the act of smoking; it was just another nicotine delivery system, so I was back on the patches the next day.
I'm getting "the urge" three or four times a day, but it doesn't translate into a desire to obtain cigarettes and smoke them; it's an abstract urge to "do something" (which is how 1,500 brochures got folded!). And if the cravings get bad enough, I can revert to the gum. I don't think that will happen, though: I just want the nicotine out of my system and out of my life.
On the health front, my blood pressure, both systolic and diastolic counts, have dropped 10-20 points, (now about 124/68 and my resting pulse is down from 86 to 64. I have gained back five or six of the 27 pounds I lost last year, but I can keep an eye on that: With everything else that's going on right now, I'm not going to throw dietary constraints on myself while trying to cook properly for Steve.
So here's hoping that the chemo will be effective as hell and that Steve will tolerate the regimen well and we can get really aggressive in managing this disease. As they say: So far, so good.
Because, to be honest, I want to get to some of that fun retirement stuff.
Wednesday, March 27, 2013
Life Changes Like That
The last post was about the trip to Eureka. It was about looking hopefully at the future, seeing a place of green and peaceful retirement. I didn’t mention it in the blog entry, but Steve was dealing with dripping sinuses and a winter cough. This is not unusual; he’s had “holiday colds” many times in the years we’ve been together.
When the cough persisted into January, I urged him to go to his doctor at the VA clinic in downtown L.A. He did, and the doctor gave him some antibiotics and sent him home. But the cough persisted after the regimen of pills was completed, and Steve was feeling short of breath, so he returned to the clinic, put himself on a waiting list and, luckily, was seen by another doctor. They took an X-ray of his chest and found fluid in his right lung, so he was shipped off to the Long Beach VA Medical Center via ambulance, since the emergency room at the West L.A. VA facility was having sewer problems and was temporarily closed.
They kept him overnight in Long Beach; walking pneumonia was the diagnosis. He was given an IV drip of antibiotics, then sent home the next day with another course of pills. I picked him up in Long Beach and drove him to his car, which was still parked at the downtown clinic. The doctors at Long Beach had told him to return to the emergency room there if things didn’t improve.
Oddly enough, I had been broaching the subject of quitting smoking with Steve since January. It wasn’t a New Year’s-resolution kind of thing: I had just counted up the amount of money we had spent on cigarettes over the course of the year and come up with a rough estimate of $3600. We had been looking for simple ways to economize, and that seemed like a good place to start. After all, nicotine patches are now about 30% cheaper than cigarettes, and the gum even more so.
After a week of antibiotics at home, Steve hadn’t improved and was still short of breath. On Tuesday, as he was getting ready for work, he barely had enough wind to take a shower and get dressed. After 90 minutes at work, he returned home and asked me to drive him down to the emergency room in Long Beach.
After a second X-ray there, it was determined that the level of fluid in the lung had increased, and he was admitted into the hospital for treatment. The next morning, they drew off almost two liters of fluid from the lung. A biopsy of the fluid revealed adenocarcinoma cells, and the initial diagnosis was lung cancer.
Steve remained in Long Beach on Wednesday, undergoing a battery of X-rays and CT scans, while I stayed at home working on several business projects. A bronchoscopy and several biopsies were scheduled for Thursday morning, so I went down to visit him that afternoon. The doctors said they were holding him over until the lab results returned on Friday. I asked them to wait until I arrived on Friday to give their final consultation on the case, so I could be there for the prognosis and recommendations of treatment.
I got there a little after noon on Friday, and around 2 o’clock two of the attending physicians arrived with more specific information: There was a mass in the right lung, a small mass on one vertebra and also on the bottom of the sternum; lesions were apparent on the liver and pancreas. I asked if this was a case where complete remission was likely and they were doubtful. The doctors suggested that we wait until the consultation with the oncologist to get more specific information, since she would have reviewed the test results from the week and have a better understanding of the case. So Steve was discharged that evening and came home for the weekend.
Of course, the weekend was spent simply wrapping our heads around the bad news, telling ourselves that our generation had a bleak view to the word “cancer,” and that treatment plans were far more sophisticated nowadays; survival rates, even without complete remission, are counted in years now, not weeks or months. The biggest anxiety, however, was in simply not knowing what was next on the agenda; the biggest epiphany, realizing that life had changed in the course of a few short days.
Monday was the appointment with the radiologist, and he was very helpful in describing the general approach to treatment: chemotherapy was the way to go to start with, then radiation might very well be prescribed in between courses to deal with specific problem areas. His tone was far from dire, and his attitude seemed to be serious but not remorseful or maudlin.
Since December, Steve has pulled just about every muscle in his back, sides and stomach during his coughing fits, and coming back from Long Beach, he pulled another. He spent the day on the heating pad and slept that night in the recliner in our bedroom. Yesterday he spent the same way. I kept busy with errands and chores, stocking up on food and household supplies for the next two weeks, emptying trash, cleaning the cat box, doing the dishes.
Steve has his oncology consultation today (Thursday), and we should learn what the plans and schedule are for his course of therapy. We’ll also have a chance to talk with the other members of his treatment team, including a social worker who can give us all the information we need about disability benefits, support groups, on-site living arrangements and the like. I really feel blessed that we landed in Long Beach, because I don’t think better or more attentive care could be had anywhere in Southern California.
Long Beach is a wonderful, sprawling facility and the staff is attentive and responsive. They even have free valet parking. Visiting hours are “always,” and when I identify myself as Steve’s husband, I am afforded all the respect and privileges a spouse should receive. While filling out a form that listed next of kin, Steve said, “What should I put down under ‘relationship’?” I replied “Husband; it’s the truth.” Several nurses have even congratulated us on being married. At least at the VA, “don't ask, don't tell” is something it seems everyone was ready to put in the past. It’s uncanny that the Supreme Court is hearing these two cases on same-sex marriage at this time when our marriage is so vitally important to us.
The most reassuring thing is that hospitalization and treatment are completely covered, with no insurance company approving anything. We can focus our concern on Steve and his recovery, and not some catastrophic financial impact of this life-changing event: Steve was planning on retiring in June, in any case.
Friends and family have been wonderfully supportive since he posted the news on Facebook (what a 21st-century way to make the announcement). Tales have poured in from cancer survivors and folks who had loved ones who lived with the disease for 10 and 15 years beyond diagnosis and treatment. But, as one survivor said, “Each case is so unique, so different.”
As for me, I’m glad that I don’t have a 9-to-5 job that demands my attention, and that my work can go with me anywhere I can set up my laptop and access the Internet (I’ve already asked about wifi spots near the hospital in Long Beach). My schedule is totally flexible and, as long as my clients can reach me by phone and I can retrieve my e-mails and graphics files, I can continue getting my work done.
So life has changed, turned on a dime. This first week seems a horrific and terror-filled one, but I know that we will settle into the adventure ahead (dubious though it might be) and ride it out to its conclusion.
Death always has been at the end of life. When one hits 60, it’s hard to avoid the realization that there is far less left of living than has already passed. Steve has knowledge now of what probably will end his life, but when that will occur is still as uncertain as it always was. And with that knowledge, hope arises that it will be a good long while, and that the days between now and then can be filled with meaningful things.
I told Steve, first priority is treating his disease and getting control of it. Next to that, the most important thing is deciding what will bring him joy, and that’s what we'll do. Because, after all, enjoying yourself and having a good time is what retirement’s all about.
When the cough persisted into January, I urged him to go to his doctor at the VA clinic in downtown L.A. He did, and the doctor gave him some antibiotics and sent him home. But the cough persisted after the regimen of pills was completed, and Steve was feeling short of breath, so he returned to the clinic, put himself on a waiting list and, luckily, was seen by another doctor. They took an X-ray of his chest and found fluid in his right lung, so he was shipped off to the Long Beach VA Medical Center via ambulance, since the emergency room at the West L.A. VA facility was having sewer problems and was temporarily closed.
They kept him overnight in Long Beach; walking pneumonia was the diagnosis. He was given an IV drip of antibiotics, then sent home the next day with another course of pills. I picked him up in Long Beach and drove him to his car, which was still parked at the downtown clinic. The doctors at Long Beach had told him to return to the emergency room there if things didn’t improve.
Oddly enough, I had been broaching the subject of quitting smoking with Steve since January. It wasn’t a New Year’s-resolution kind of thing: I had just counted up the amount of money we had spent on cigarettes over the course of the year and come up with a rough estimate of $3600. We had been looking for simple ways to economize, and that seemed like a good place to start. After all, nicotine patches are now about 30% cheaper than cigarettes, and the gum even more so.
After a week of antibiotics at home, Steve hadn’t improved and was still short of breath. On Tuesday, as he was getting ready for work, he barely had enough wind to take a shower and get dressed. After 90 minutes at work, he returned home and asked me to drive him down to the emergency room in Long Beach.
After a second X-ray there, it was determined that the level of fluid in the lung had increased, and he was admitted into the hospital for treatment. The next morning, they drew off almost two liters of fluid from the lung. A biopsy of the fluid revealed adenocarcinoma cells, and the initial diagnosis was lung cancer.
Steve remained in Long Beach on Wednesday, undergoing a battery of X-rays and CT scans, while I stayed at home working on several business projects. A bronchoscopy and several biopsies were scheduled for Thursday morning, so I went down to visit him that afternoon. The doctors said they were holding him over until the lab results returned on Friday. I asked them to wait until I arrived on Friday to give their final consultation on the case, so I could be there for the prognosis and recommendations of treatment.
I got there a little after noon on Friday, and around 2 o’clock two of the attending physicians arrived with more specific information: There was a mass in the right lung, a small mass on one vertebra and also on the bottom of the sternum; lesions were apparent on the liver and pancreas. I asked if this was a case where complete remission was likely and they were doubtful. The doctors suggested that we wait until the consultation with the oncologist to get more specific information, since she would have reviewed the test results from the week and have a better understanding of the case. So Steve was discharged that evening and came home for the weekend.
Of course, the weekend was spent simply wrapping our heads around the bad news, telling ourselves that our generation had a bleak view to the word “cancer,” and that treatment plans were far more sophisticated nowadays; survival rates, even without complete remission, are counted in years now, not weeks or months. The biggest anxiety, however, was in simply not knowing what was next on the agenda; the biggest epiphany, realizing that life had changed in the course of a few short days.
Monday was the appointment with the radiologist, and he was very helpful in describing the general approach to treatment: chemotherapy was the way to go to start with, then radiation might very well be prescribed in between courses to deal with specific problem areas. His tone was far from dire, and his attitude seemed to be serious but not remorseful or maudlin.
Since December, Steve has pulled just about every muscle in his back, sides and stomach during his coughing fits, and coming back from Long Beach, he pulled another. He spent the day on the heating pad and slept that night in the recliner in our bedroom. Yesterday he spent the same way. I kept busy with errands and chores, stocking up on food and household supplies for the next two weeks, emptying trash, cleaning the cat box, doing the dishes.
Steve has his oncology consultation today (Thursday), and we should learn what the plans and schedule are for his course of therapy. We’ll also have a chance to talk with the other members of his treatment team, including a social worker who can give us all the information we need about disability benefits, support groups, on-site living arrangements and the like. I really feel blessed that we landed in Long Beach, because I don’t think better or more attentive care could be had anywhere in Southern California.
Long Beach is a wonderful, sprawling facility and the staff is attentive and responsive. They even have free valet parking. Visiting hours are “always,” and when I identify myself as Steve’s husband, I am afforded all the respect and privileges a spouse should receive. While filling out a form that listed next of kin, Steve said, “What should I put down under ‘relationship’?” I replied “Husband; it’s the truth.” Several nurses have even congratulated us on being married. At least at the VA, “don't ask, don't tell” is something it seems everyone was ready to put in the past. It’s uncanny that the Supreme Court is hearing these two cases on same-sex marriage at this time when our marriage is so vitally important to us.
The most reassuring thing is that hospitalization and treatment are completely covered, with no insurance company approving anything. We can focus our concern on Steve and his recovery, and not some catastrophic financial impact of this life-changing event: Steve was planning on retiring in June, in any case.
Friends and family have been wonderfully supportive since he posted the news on Facebook (what a 21st-century way to make the announcement). Tales have poured in from cancer survivors and folks who had loved ones who lived with the disease for 10 and 15 years beyond diagnosis and treatment. But, as one survivor said, “Each case is so unique, so different.”
As for me, I’m glad that I don’t have a 9-to-5 job that demands my attention, and that my work can go with me anywhere I can set up my laptop and access the Internet (I’ve already asked about wifi spots near the hospital in Long Beach). My schedule is totally flexible and, as long as my clients can reach me by phone and I can retrieve my e-mails and graphics files, I can continue getting my work done.
So life has changed, turned on a dime. This first week seems a horrific and terror-filled one, but I know that we will settle into the adventure ahead (dubious though it might be) and ride it out to its conclusion.
Death always has been at the end of life. When one hits 60, it’s hard to avoid the realization that there is far less left of living than has already passed. Steve has knowledge now of what probably will end his life, but when that will occur is still as uncertain as it always was. And with that knowledge, hope arises that it will be a good long while, and that the days between now and then can be filled with meaningful things.
I told Steve, first priority is treating his disease and getting control of it. Next to that, the most important thing is deciding what will bring him joy, and that’s what we'll do. Because, after all, enjoying yourself and having a good time is what retirement’s all about.
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