Today we were busy but nothing outstanding was accomplished.

John had to re-do his welding on the pipes for the master shower.

I tried to get our Christmas tunes ready for our dulcimer club’s October 16th practice. In the spring, when we came home from Florida, I intentionally left our Christmas tune book and all my autoharp chord cards down there because I figured that’s where we’d need them. So today John borrowed a copy of the tune book we play from, and I started re-creating what I’d left at the condo. It took the afternoon, but that’s cheaper than a trip to Florida.

John went to Home Depot and did a little shopping. When he got home he was exhausted.

He tires so easily. I am so worried about him!

My sexy husband, John, played today with George’s pick-up bank at a St. Charles, MI, community event. John was on banjo and he was reallllllllly good. He kept his beat and played the correct melody so when everyone else got lost, he was their beacon.

But that’s not why I adore him. He’s a genuinely nice guy. He is in a weakened state, so he let me “carry” much of the sound equipment but he was reluctant. I insisted, and we got him all packed up.

They started playing at noon. I showed up about 1:30 and he glowed when I walked in (that’s why I love him). He winked at me. He let me know he was glad I came, and he made me proud.

What more could an old lady like me ask for?

I’m 67. I’m no babe. I’m waaaaay over the hill, but he makes me feel that I’m a sexy, young hot lady. I sure love that guy!

Our master bath shower has been dripping for some time. It’s really become annoying because there’s no way to stop the drip and it’s close to our bedroom. When the house was quiet, the loud drip – drip – drip was enough to drive you crazy. (The only way not to hear it was to close the door, but when the bathroom door was closed it was hard to see your way to the bathroom without turning on a light.) John determined that the shower needed a new washer or something like that in the “handle” part of the shower, but we also wanted a new shower head (one of those disk types). We bought the shower head a couple of days ago in preparation. (The literature with the shower head said it would be a 15 minute job.)

So this morning, armed with determination and the new shower head, John started what we both felt would be a tiny job: the washer first and then the shower head install.

Unfortunately over the 24 years since it was installed, the handle action had frozed up and there was no way to replace the washer. In the process of cranking on it, a pipe broke, making it necessary to replace the whole handle assembly.

And since the shower didn’t have a shut-off of its own, all the water in the house was shut off for the duration of the project.

A hole had to be cut through the wall of the front hall closet (which shares a wall with the shower) so we could work on the problem.

John drove to Home Depot and got the parts he needed.

He had to weld the parts with a welding torch. The fire alarm kept going off because the torch would put out sooty smoke. It was therefore a very loud, dirty job. The oily soot got all over everything. (I’ll be cleaning it up for a long while.)

But we were making head-way when the acetalene ran out. The only supplier was about 15 miles away (30 round-trip). John had already over-done it, so I insisted on going after the stuff and he stayed home to rest.

When I got back, he looked a little better and we completed the job. It took from about 10:00 a.m. until 5:00 p.m.

Never say something is a “tiny” project.

John’s diagnoisis of idiopathic pulmonary fibrosis (usual interstitial pneumonitis) doesn’t have a lot of treatment options, but Dr. Indira, John’s pulmonary specialist, has him on a steriod (Prednisone). Apparently it has lots of side effects that mess up ones digestive system, so he’s taking a second pill to combat that effect.

Dr. Indira sounds optimistic that she can stop the deterioration of his lungs for a while. If she can halt the problem at this stage, he said he can live with the lung volume he has left. We’re hoping that such a remission would be long-lasting but you just don’t know.

He’ll return to her office in two weeks to see if there’s any improvement.

She also uses a second medication. She’ll wean him off Prednisone and onto the other med at the end of the two weeks. I guess the Prednisone is more powerful, but once the lungs become stabilized, she’ll switch him over to the other to avoid the side-effects of Prednisone.

I’ve joined a couple email lists that are support of people with idiopathic pulmonary fibrosis (usual interstitial pneumonitis) or their caregivers.

It sounds like we have a real fight against this disease on our hands.

John doesn’t want to talk about the possibile outcomes because he’s very hopeful that he can lead a long, productive life. I think that attitude is the only one which will help him at this point. We will NOT discuss it at this point, and there’ll be no hint that the prognosis is not good.

So if you know John, and if you have read scary stuff on line which would indicate otherwise, please DO NOT share it with him. Please be optimistic and realize that’s what will help him the most. If you wish to understand more, there is an article which describes his form of I.P.F. fairly concisely. http://netwellness.org.

I can’t believe that as many people die each year of pulmonary fibrosis as die from breast disease but no one knows about it.

I was so anxious to get back to Florida, but my whole attitude has changed. (Isn’t it funny how your priorities change when faced with a crisis.)

We have put our Florida plans on the back-burner. At this time, we are thinking that we’ll head down there sometime between December 14th and the 19th. I’d like to have time to decorate and make our condo feel Christmas-y. I’d hope we can make it for Dale and Trudy’s Christmas Eve party and I’d like to be sure to buy New Years Eve tickets.

But if those plans fall through, we’ll adjust. At this point, none of that feels important.

I’m sure we both suffer from seasonal affective disorder (S.A.D.) when we winter in Michigan, but we will make any situation work!

He was released this afternoon. He looks great!

After talking with the physician assistant, John is feeling very optimistic. His diagnosis is Pulmonary Fibrosis, but she told him it’s a chronic condition he can live with. It’ll require some changes in how he does things, but he’s upbeat because of things she said.

And I’m feeling much more hopeful. I had read numerous reports on line (including some by the Univ. of Mi.) that scared me to death. But the PA said that he has a good chance of responding to treatment (not being cured, but slowing the progression of the disease.) I believe believe that. It sure doesn’t do any good to think the worst. I want him around for a long while.

We have a friend, Nan Boody, who has survived over-whelming odds with Type 1 diabetes. She’s in her 70’s and is still healthy and well.

John figures he can learn to “live with” pulmonary fibrosis, and I believe that if anyone can, he can.

John told the P.A. about his father who was still going strong at 91. She said, “You’ll beat him.” I believe it too. No matter what obsticles are in John’s way, he will make it. I’ve never met anyone who could make me believe in anyone like I believe in John. We just all have to pray for him and he’ll do the rest! I figure we’re good together for at least 30 more years! (John’s 71.)

John’s return home has been postponed until tomorrow (Monday). He’s been in the hospital for a full week. He was disappointed by some of the care and the room was tiny tiny especially since two patients occupied it. The fellow in the next bed’s wife was there all day each day so there were three of them in the room most of the time. (Of course I was there a lot too, but only stayed a couple hours at a time.) Finally about 5:00 his roommate was discharged. He thought he’d have the room to himself but they moved someone else in this evening.

He finally got his diagnosis which we don’t totally understand so we’re waiting to have it interpreted by a physician.

I miss him! Tomorrow morning he’s hoping to leave. He is anxious to see the doctors. I’ll see if I can get him in tomorrow.

Tomorrow John is scheduled to have the tube removed which is in his lung. If it goes well, he was told he can probably “get outta there.”

He’s ready. But today he enjoyed lots of football games since the hospital has full cable access. Had he been home, he would have missed the Michigan game because it was only on cable and we only have through the air reception.

I have been having good luck finding sports games on line, but it’s definitely NOT guaranteed.

I kidded him that I was sure he’d want to stay through the football season, so he wouldn’t miss any games. See, there are perks to being in the hospital.

Here it is Friday, five days since John had his procedure, and he’s still in the hospital. His lung hasn’t healed sufficiently and is still “leaking air.” A LPN took time to show us the indicator on “the pump” which shows if there’s still a “leak.” We could clearly see the bubbles that indicate that air is escaping. At least now John won’t get his hopes up because he can see for himself that it’s still “bubbling.”

I visited him for awhile this afternoon. After I left, Dr. Genco, his surgeon, stopped in and said that except for the leak, he looks fine. He said he can’t explain why the surgical site on the lung closes up faster on some folks than on other. He shut off the “suction” on the pump which has been pulling fluid from his lung. It’ll continue to collect the fluid, but it’s just being gravity fed into the discharge container. Dr. Genco seemed to think the “pull” could be delaying the healing process.

John wasn’t as up-beat as yesterday. He is ansy and uncomfortable. He just wants to go home and feel better. I know he has to be as frightened as I am of the possible diagnosis.

==========================

On a more light-hearted topic:
Last night, I spoke on the phone with two of our Florida neighbors (Linda and Geri), very nice ladies.

Geri mentioned that another nearby neighbor, had a pipe burst in their condo while they were “up north.” There was a lot of damage since no one had checked the condo for some time so the problem went unnoticed. She volunteered to look in on our place today. I called her this evening and everything is just fine. It’s reassuring.

Johnn will probably come home tomorrow. (He is optimist that he will.) He needs an x-ray tomorrow to confirm that his lung isn’t “leaking” and they’ll discharge him.

He was talking about heading to Florida on schedule – leaving next Saturday. I am befuddled. It’ll depend on what the doctor says, but he really sounds like he’d like to take off tomorrow. He seems to think he’ll get the go-ahead.

I’m not pessimistic, but I don’t want to plan on anything until the doctor gives him an all-clear. Waiting until December would be easier on both of us. There’s no reason to rush and risk his health. Going to Florida now seems totally unimportant. There’s only one concern, getting him the best care possible.

But his optimism is wonderful. He sounds so up-beat. I’m sure we won’t make any firm decision until after he gets input from his physicians, but I do love his attitude! Everything has been so hard on him lately but he’s bouncing back. I sure have one heck of a great guy! (Either that, or the meds they had given him put him in a really happy state.)

Without John here, I’m feeling overwhelmed by the stuff that is required to keep up the house. John usually does more than his share of the work around here. I’m guilty of letting him.

John’s complains about the time I spend “on line” and he’s correct that I spend hours every day on my computer but a lot of that time is taking care of my web-based business and maintaining the household accounts. Those jobs can’t be ignored and he appreciates that they are done flawlessly.

Because of the economy, my dulcimers.biz business has been slow this year. For some reason, this week it’s changed. I’ve had more inquiries for sales in the past week than I’ve had since the holiday season. Folks seem to be “buying” again, or at least thinking about it. Yeah! But responding to those inquiries takes time.

I’m finding it challenging to get all the stuff done that needs to be done and run back and forth to the hospital.

Sharing the chores sure makes life easier.

I don’t know how much of his old routine he’ll be able to assume when he gets back home. I have a feeling that life is changing for both of us.

I’m certain that John and I should and will wait to go to Florida until December. We had originally planned to leave on September 12th, but when we realized that wasn’t possible because of John’s surgery the 14th, we decided, as long as we could leave by October 1st, it would still work. The trip would merely be delayed a couple of weeks.

Now I can see that there’s no way that John will be ready by October 1. In fact, he may not even be able to drive for SIX WEEKS!

It really don’t feel it’s an option. I wouldn’t want to do anything else. John’s my only priority. He’s what’s important.

I had justified wanting to go by convincing myself that he’d do better in the sun down there; he would relax and heal. Here he over-does it every day. He works too hard. I can’t slow him down. But maybe, when he gets out of the hospital, he will be forced to move at a slower pace.

I have been making lists of things I need to do to put our trip on hold until December. At this point, it looks like we could leave for Florida on December 14th.

His Saginaw doctor needs time to set up a treatment plan. I can see that pushing us to leave is absurd. In fact, if we’re not ready in December, we’ll adjust to that too.

Yesterday John had his lung biopsy. I just spoke with him on the phone and although it hurts like !@#* when he coughs (which they’re asking him to do), he said he’s doing ok. He’s had his breakfast and was pleased that he was able to get his must-have banana. (He feels he con’t survive without a daily banana.)

Willow, our tiny old dog, is miserable without him. I was able to get her to take her heart medicine, but she’s not eating her main meal. She’s John’s shadow and his absence is really bothering her.

She usually wakes John up, and this morning she stood by the side of the bed barking, even after I was up, (She’s too small to see into the bed and I think she figures he’s hiding there.)

But Willow’s not the only one missing John. He does so much around here. I need to increase my share of the load. Of course his condition now will require that I do more.

Driving home last night seemed strange. It’s been years since I’ve done any night-time driving.

But we’ll get by until he is released from the hospital, and then I’ll baby him and feel fortunate that I share my life with him!

Spent most of the day today answering emails, revising my http://dulcimers.biz, “sales” website and trying to figure out why John’s computer wouldn’t connect to the internet. (I was successful fixing things.) I also changed our motel reservations to the weekend of September 26-28. It all took more time than I had imagined, but nothing of substance was accomplished.

Yesterday was more of the same. Lots of sales inquiries to answer and other non-productive time-consuming chores.

I did sell a hammered dulcimer to one of my customers because of the stuff I wrote yesterday and today.

I’m hoping we can leave for Florida two weeks from yesterday. If we can’t, I will try not to be disappointed. That will give us seven weeks before we head back home for Christmas performance preparation.

Monday John is scheduled again (for the third or fourth time). If he’s cancelled this time, our plan is to go to the Emergency Room and get action. We won’t leave the hospital until he has the procedure.

But at least he’s scheduled. It’s only taken two weeks of being “on-call”.

I spent the afternoon dealing with the accountant who is doing the final IRS report for my mother (who died last year). I also had to submit a couple of reports to the ODPC. It was one of those work-on-the-computer days.

Tomorrow is the huge garage sale held in our sub-division at about 1/2 of the homes. We’ve participated in the past, but it takes time and energy which we don’t have. This year it will intrude on us, since we have no vested interest and there’ll be thousands of folks invading our space. But we realize it’s fun for other neighbors.

My dear husband, John, is so discouraged.

It wasn’t easy convincing him that he had to go with the doctor’s suggestion and have this lung biopsy. Now he’s been stalled TWO WEEKS. Each day he gets more discouraged and flustered. It seems to him that everyone else is more important. No one returns calls, he waits hours for some word. They set him up with promises of “tomorrow” and then it falls through. Last Tuesday he was supposed to have had the procedure. Then it was Tuesday of this week, then Thursday, then Friday, and now.. who knows?

He’s lost another five pounds.

I spoke with the surgeon’s scheduler this morning. (She isn’t the one to blame.) I told her we were supposed to have left for Florida today. And now we’re on hold with our plans and we don’t know what’s happening. She said she’ll try to get John on the schedule, but we doubt that it’ll happen. Maybe next week, she said. Maybe? This is absurd.

So I called the surgeon’s nurse. I spoke with her at length about my concerns and fears. I explained that we are willing to pick up John’s CTs, test results, and blood work, and head to Florida or somewhere… Mayo, Johns Hopkins, etc.

The results have been the same… even to get his tests, we need to wait until Monday.

Today’s our 24th anniversary.

Although we had hoped John would have had his procedure by now and he’d be in the hospital, he’s still home. (Maybe tomorrow? Maybe Monday? Who knows?) We’ll probably go out for a nice dinner.

We will probably go to Heatherfield’s at Bay Valley. I’m all for a filet mignon (probably petite) with a nice salad.

Hopefully we’ll hear from the doctor today we we’ll know what’s happening with John’s procedure. Yesterday the word was that it’ll be either tomorrow or Monday. Hopefully it’s tomorrow. We’ve been stalled for nearly two weeks of re-scheduled dates. That’s inexcuseable!

Open heart surgeries trumped John’s lung biopsy, so he didn’t have his procedure done today as we’d hoped. We were called last night and warned that the doctor was over-booked. They had us wait at home and at noon decided to cancel it for today. The doctor was tied up with emergency open heart operations. Tomorrow it probably won’t happen (he needs to fast for 12 hours) and he hasn’t been scheduled yet, but hopefully Thursday or Friday we’ll get back on the surgical schedule.

He played the “We’re-waiting-to-leave-for-Florida” card today and that seemed to get folks moving. At least they’re saying they’ll really try to get him in this week. (Of course that’s what they said about having it done before Labor Day which didn’t happen.)

Today I discovered that we’ll lose a free night at our favorite Red Roof, if we don’t use our free coupon before November 13yh. So that’s a little extra incentive to go down there.

And tonight John admitted that if he was in Florida, he’d probably feel lots better. He’d be living the “good life” and relaxing more.

So we hope he’ll have the procedure by Friday. We’d definitely like to get outta here by the end of September. If he goes in this week, he’ll be out about Monday. That would give him almost three weeks to finish up here, and hopefully get on a treatment plan with his pulmonary specialist.

But nothings in stone. We might have to wait until December.

We just received an invitation to go over to our friend George’s house this afternoon for a cook-out.

Eating together seems to be all that our social life consists of in Michigan.

By contrast, in Florida, we go to dances, house parties and socialize at the Club House, walk the beach and go places (like Busch Gardens) I do miss Florida!

When John gets out of the hospital with the results from his biopsy, we’ll make the decision about when we’ll head South. Right now weather here is so perfect, that there’s not much incentive. I predict when the temps drop 50 degrees, the lure of Florida will be much greater!

We have options. If we can get away by the end of the month, I’m all for heading to Florida. That would give us six weeks before we have to drive back to be with our club for their holiday performances. But if we are still here into October, we might as well stay in Michigan until our last holiday gig which will be mid-December.

We haven’t been in Michigan during the fall since 2004. We have obligations here that we can fulfill (the ODPC board meeting and our music club practices, lawn clean-up, and working on the house) but the stuff we do in Florida is tons more fun.

John’s daughter, Audra, came over this afternoon with her “significant other” Dave. He’s quiet but seems like a very nice guy. I can see why they’re a couple.

We talked and talked. Early evening John fired up the grill for burgers, corn on the cob, lots of chips of various types, fresh tomatoes, and homemade apple pie. Everything was great.

I know John was pleased to have such a nice visit. Hope she comes more often. She’s lovely.

We finally got word that John will be admitted Tuesday, September 8th. (That’s the day after Labor Day.) He’ll have to check in at about 9:00 for a 12:45 surgery.

He couldn’t get into St. Mary’s (where I’d have had pull) but instead he’ll be at Covenant Medical. They’re a good facility but we’d have preferred going to St. Mary’s.

Last Wednesday John went to the surgeon who evaluated all the tests that have been run since May when he realized he had a health problem. His two CTs and blood work were taken into consideration as well as his computer lung function tests. It was definitely decided that John needs a lung biopsy.

We suggested that it be anytime after Tuesday of this week. With John’s commitment to the festival from Thursday through Sunday and a day to rest up, we felt that would be best.

We expected to hear from the doctor’s scheduler Monday. It’s now Wednesday and we have yet to find out when it will happen.

I’ve called them three times – the last time was this morning. Most of the time I only got voice mail, but this time I guess I showed that our patience is wearing thin. The office person did call back and said she hoped to get back to me this afternoon with a date. She said the surgeon who will be doing the procedure has been out of town. She still hoped that it would be before Labor Day.

But now another day as passed. It’s nearly 6:00 p.m. so we won’t hear until tomorrow at the earliest. That means it’ll be Friday before he can go into the hospital. After the procedure, he’ll be staying four days.

I’m worried. I’ve been reading the statistics. If it proves to be pulmonary fibrosis, that’s a life-threatening disease. I am so scared!!

We also have a scheduling problem. A couple months ago, we promised to do a luncheon performance at the Castle Museum Tuesday (the 8th) at noon – the day after Labor Day.

It’ll be an easy play. I’ll do most of the talking – describing the history of hammered dulcimers. But John is necessary. He does the playing. If we don’t hear by tomorrow, I’ll call and cancel out. I have warned the lady who invited us that we may have back out. We’ve never missed a performance before. At least this one is only for a handful of folks (probably under a dozen), but we still feel badly. There’s still a faint chance because maybe, with the holiday, he won’t be scheduled until mid week.

So we’re waiting…. and waiting….