Best laid plans gone awry . . .

Something about the best laid plans of mice and men . . . and for us, the best laid plans have gone so wrong! But, this Pollyanna keeps on plodding away thinking positive thoughts . . . as we all should!

That being said, here is the update . . .

I arrived home, at last and reluctantly, yesterday afternoon after a full week in the hospital with John. . . at the prodding of the doctors, friends, family, and my kids – who finally drove me home, made me some food and put a big glass of wine in my hand . . . hey, it was 5 o’clock somewhere! Andrew took over for me. I had been in the hospital with John 24 hours a day, sleeping in reclining chairs that got progressively less comfortable as each nite wore on . . . do you remember being young and agile and being able to sleep anywhere?!?!

The week we spent in Progressive Coronary Care Unit seemed to start out okay, but began declining rapidly . . . by Thursday John was having tremendous difficulty breathing and his heart became irregular all made worse by the amount of fluid he was retaining due to being on 24 hour a day IV drips of everything . . . he sometimes had 3 different drips going in (and not much coming out). Scared the hell out of both of us!! By Friday we were all pretty sure we were going to lose him within hours.

But, the good docs came along and after plenty of consulting back and forth, it was decided on Friday afternoon to transfer him to ICU. In an hour all of his vital signs showed big improvement, his breathing was MUCH improved, and he (and I) finally had a fairly peaceful sleep. He has calmed down, the muscle tremors have stopped and he is so much more lucid . . .

Andrew reported last evening that he was finally shaved and bathed, reading the newspaper, watching some football, had eaten a little (after 2+ weeks of not eating), and even had a bite of his favorite cream donut!! The edema that was visually apparent in his legs and feet and showed up on X-ray in his lungs, is finally beginning to abate . . . let’s keep those fingeres crossed for that to continue! Andrew assured us that he was doing much much better.

I am anxious to go see him . . . but first I will enjoy a bit of peace and quiet this early AM . . .

I want to once again thank all of you who have been so supportive to all of us as we go thru this . . . many have brought food and gifts . . . I have gotten some lovely hospital “survival kits” (peanuts, cookies, candy), a beautiful pair of sivler earrings that have been blessed by a priest especially for me, a hot pink sleeping shirt that is sure to keep the staff and patients chuckling as I breeze down the hospital corridor finding ice, soda, blankets, etc for our boy! There have been so many kindnesses shown me that I can’t begin to name them all here (especially at 5 AM), but I thank you all!

So, I must run and try to get myself back to my old self . . . it has been so long since I had any makeup on or fixed my hair, and while my dear husband thinks I look beautiful anyway, I do think it is time to make an attempt to look like my former self . . . right now I look like I just returned from the beach!!!

So until next time, keep those prayers coming in and be sure to keep positive! Hug your spouse or partner and tell them how much you love them, enjoy your children, be thankful for your blessing, and cherish your friends! And remember, that while John and I have been going thru a terrible terrible time and fear our loss, we are also thankful for all of the blessings in our life . . . we still count ourselves lucky in the grand scheme of things! We have had nearly 30 years of love, laughter, tears and joy, and the benefits of John’s hard work that have allowed us to have so many of the good things in life! John and I have worked hard together to be able to enjoy our life together. We are blessed with 5 beautiful children, their spouses and partners, 7 fabulous grandchildren, a large network of cousins and aunts and uncles, and many many dear and loving friends. So, while this is certainly NOT what we had planned for our 60s, we are thankful for all we have had in life . . . and we hope for at least a little more time together – a MIRACLE would be especially wonderful, but that might not be what the Powers that Be have in store for us. . .

Love, laughter, tears, hopes, positive thinking, and prayers . . . Linda

Not ready to quit!!!

Dear Friends and Family: I know I said we would have the results of John’s biopsy in 24 – 48 hours and that I would let you know those results reight away. Well, we got the results and it is taking me some time to “wrap my head around” the results . . . and that’s why you haven’t heard from me.

The results were not good . . . the hope was to achieve under 5% blasts and he only got to 20% . . . not good results at all. More distressing is that his health is so precarious now that he can’t have another chemo treatment.

Now, I refuse to give up hope that something can change . . . but right now the goal is to just get him somewhat healthier . . . he is retaining fluids (almost 20 pounds worth) and they can’t seem to find a way to get rid of the fluid . . . he isn’t eating – hasn’t in about a week . . .

He is now in the Progressive Coronary Care Unit because he has had shortness of breath and needs to be on oxygen all the time. I was also told that he would get more personalized care in this unit . . . but that wasn’t the case so I had a “little chat” with the doctor and nurses (any on you who know me also know what “little chat” means) . . . they are more attentive now, but I stayed overnight in a reclining chair last night and made sure all was right. THe plan is to get him back to 7C ASAP! And, the nurses on 7C are anxiously awaiting his return . . . I went upstairs yesterday and talked to them about what was going on down on floor 3 and they were kind and loving AND managed to calm me down. They also came down to see John before they left for the day. That gave him a real boost and I am so thankful for them. Can’t wait to get back. (Jeez, who would have thought I would ever be happy to return to a long term care unit?!?! But I will feel safer there.

SO, that is the bad news . . . but we all really need to stay as positive as we can! John is pretty depressed about this whold thing, and Thursday night after we talked to the oncologist about the results he looked very defeated . . . I think we were all feeling very defeated. But we just can’t quit.

So, I’m gonna send this out . . . I haven’t really checked it for spelling or syntax or any of that as I am using a very old laptop, sitting outside his hospital room, and just want to get this posted. I will keep you all posted as we go on with this.

Thanks for all the cards . . . they are here in the hospital with us!

Love, laughter, tears, positive thinking, and prayers . . Linda

Keep your fingers crossed!!!

Good morning, one and all!  Sorry I have been a little negligent this past couple of weeks . . . it’s been a bit hectic!  But here’s the latest . . .

Our poor boy has had a pretty rough couple of weeks . . . he finished the 7 day course of 24 hour a day chemo with no problems at all (other than the residual cough and runny nose and cold sores from the flu and influenza that landed him in the hospital for a week over Thanksgiving).  He was feeling pretty damn cocky about this until It hit!  No nausea, fortunately, but low grade fevers, fever blisters have taken over his entire top lip almost to his nose and down thru his throat, and general malaise (that’s a gentler way of saying he feels – and looks – like his got hit by a steam roller!)  He has no energy and no appetite and doesn’t even want to watch TV.  Now, to those of you who know John well, he is addicted to TV, so this is a serious side effect.  But, I know this, too will pass.

He had another bone marrow biopsy this morning – under anesthesia this time, thank goodness!  This was planned and is nothing to be concerned about.  It is, however, something for which we need our fingers crossed and prayers said, as this will determine how well this chemo has done its job or if we need another round.  We will have the results in 24 to 48 hours and I will let you all know the results as soon as I know!

Other than that, there is nothing else to report.  I spend most days in the hospital with John, usually for about 8 hours, mostly watching him sleep . . . but sleep is good and he is rebuilding his strength, so that is good!  Now, if we could get him to eat, his strength would come back faster . . . but let’s not rush success. Unfortunately, he has been very cranky recently (gee, do you wonder why?!?!) and that has been quite difficult for both of us . . . the Sunshine in my life has turned into a reincarnation of that damned Hurricane Sandy . . . but as he feels better the Sunshine will return!

The rest of my days are pretty uneventful . . . it takes me forever to get ready in the morning . . . change clothes 20 times to make sure I am not wearing anything he won’t like or that I know he thinks accentuates my expanding girth . . . take the dogs for a walk – and these two pups are not interested in going for a walk or doing their “business” until after 11AM, thank-you very much . . . taking care of just a bit of business stuff . . . laundry when I can remember; evenings are absolutely NON-productive as I do what I call “Sit-and-Stare” . . . after 8 hours in the hospital I am in no shape for anything other than a glass of wine, a little romp with the puppies, and then a couple of hours of HGTV.  Yikes!  Could I get any more boring?!?!  Oh well, whatever gets me thru the night!

Thanks to all of you who have sent cards and pictures to us!  The cards are up on the wall in his room along with some pictures the grandchildren have drawn and a few family photos.  He wears his Superman hat, a big red and blue furry thing, when he shuffles down the hall way (which hasn’t been too often this week!) and I will take him a Santa hat one of these days . . . as he loses his hair (which seems to have started a bit) I will take him his funny baseball cap with the attached ponytail!

So, until later this week when I have results, that’s all for today!  I hope you are close to being ready for the holidays (I haven’t bought a single gift and don’t know if/when I will).  I will be spending the Holiday at Lehigh Valley Hospital with our patient, and that’s okay with me . . . John has always loved Christmas and I have so many happy memories of him hauling out bag after bag of presents for the kids, family, and friends . . . I think there was a part of me that actually thought he might me the real Santa!!! 

Now I must run . . . Mr. Sunshine just called wondering where I am, but mostly to tell me he wants more chocolate chip cookies!!!  When I told him he had to decide if he wanted me with him in the hospital or at home making him more cookies he had to give it some serious thought . . . hmmmm . . . do you think he just loves me for my cookies?!?

Love, laughter, postive thinkings, and prayers!

Linda

Holiday Request to my Blog Buddies

Many of you have gotten an email from me with this request, but, as promised, I am putting it on the Blog Site . . .

Sara and Laurie have started a digital album for John for Christmas and have suggested that I request digital pictures from friends and family. I thought I might also ask our “Blog Buddies”, those who follow our blog but may not recieve personal emails from us, to also add a picture to cheer John up a bit!

And, as to how John is feeling right now, he has gone from “hot steaming camel dung” to huge pile of elephant poop! Poor boy now has chemo brain, feels like he was run over by a steam roller, sore throat, cold sores, and his aches and pains have aches and pains. THIS, TOO, WILL PASS!!! although he doesn’t think it will ever end. He is tired of feeling like crap, tired of being in the hospital, misses his puppies, and generally feeling pretty awful.

Gotta run for now . . . my boy needs a hug, some love, and some strength!

Love, laughter (well, not much laughter right now), positive thinking, and prayers!

Hope your Holiday Season is a joyous one!

Linda

You are my sunshine!

You are my sunshine – John has always been the sunshine in my life!  he walks into a quiet room and you can feel the sunshine in his joy and laughter!  He doesn’t just walk into a room – he bounds into a room and just makes you feel the sunshine of his personality!  One of the songs I sing (okay, caterwaul) to our little grandson is “You are My Sunshine, My Only Sunshine” . . . I don’t know if he likes it but it always makes me feel good!

Our boy is feeling pretty crappy, still/again. He is also very tired of being in the hospital and a bit cranky (gee, I wonder why?!).  He ran a fever of 101.1 last nite and is now on 2 antibiotics til the results of the blood culture get back . . . the blood culture is to see what kind of infection he may have so that they can treat that specific infection . . . maybe it will be nothing, but they are keeping a close eye on him. 

And, by “keeping a close eye on him” I mean they are constantly waking him to check his vitals, ask him his name (and Oliver Shagnasty is NOT an acceptable response, but they have come to expect it), etc . . . those of you who know John well, know that he does NOT like being awakened and is NOT shy about telling you so . . . fortunately his nursing staff is great and always jolly AND used to grumpy old men!  I do love these women . . . they are always so cheerful!

I am home right now doing laundry, baking some chocolate chip cookies (since all he did yesterday was whine about not having any homemade cookies – and Liz and Emily and Grace are making him MORE – so this should keep him happy for quite awhile!), taking care of business stuff (last minute Applications for Continuances, client calls, etc), paying those dreaded bills that don’t go away just because he is in the hospital, etc.  I am learning to mostly ignore the ever growing dust-bunnies (when I get my cataracts repaired I won’t be able to take off my glasses to ignore those little dust-bunnies!  Good reason NOT to get that surgery – but being able to drive at night without fear will outweigh the sight of those little buggers!).   I will head over to the hospital shortly and curl up with him to try to take away some of his pain and frustration.  It sure is lonely in our king-size bed without him! 

The work on our beautiful house at the shore continues!  All of the floors and sub-flooring are being pulled up, all of the kitchen cabinets and 3 of the 4 bathroom vanities are now gone, the jacuzzi tub is on the curb, and the walls are down . . . what a sight!!!  I guess it’s good that I don’t have the time to go down there!  Still await the adjuster’s final report (a/k/a, how much money we will have to work with). 

The big old pine tree is off the roof of the house in the country and many of the 18 fallen trees have been cut up . . . thank-you brother Bill . . . the insurance adjuster was finally here this week to work up the numbers.  It looks brighter in here without those 2 huge trees blocking the sun!  But a 270 year house surrounded by so many trees will always be a bit dark and gloomy. 

So, that is all the news for right now.  I will be glad when my Sunshine returns – these cloudy skies are not much fun.  But I know the sun will come out again soon and we will be laughing and enjoying life again soon . . . so, Sunshine, get better soon – we need your sunny smile and hearty laugh! 

Love, laughter, positive thinking, and prayers!

Linda

Brief update

This is just going to be a quick up-date ( yeh, I know, famous last words and all… in my defense, writing is the ONLY time I can go on and on and on …you can stop reading, but you can’t shut me up! ).

This is gonna be a rough couple of weeks. He has about 8 more hours of this intense chemo (24 hours per day for 7 days). Of course, the goal is to kill the leukemia cells but the peripheral damage is that ALL bone marrow components also die. All of his blood components are plummeting … Red blood cells take oxygen to all parts of the body, white blood cells fight infection, platelets contain the clotting factor, etc. of course, the leukemia cells are those little buggers that just make a mess of everything. So he is being closely monitored! VERY closely monitored.

He had a CT scan this AM because he has had headaches . . . Negative for any problems! Yay!

Most likely he will be very ill for the next several days and we are requesting no visitors. We just can’t take any chance of him catching some strange bug. Thank you for respecting his wishes in this. I will let you all know when he is out of danger.

Thank you for your wonderful cards and notes. They are taped to the wall of his room and bring him lots of smiles.

More later! Linda

Superman in sandals!

OMG!!!!!!!!!! They shaved his whole chest to put in the Hickman catheter on Monday night!  LOL!  I’m told that the expression on my face when I saw that was priceless.  Of course, things are only gonna get MORE hairless over the next week or so . . . he has been told that all of his hair will fall out, including his beloved eyebrows.  No more Andy Rooney look for him . . . . thank you for that!  In anticipation of that, however, he asked me to give him a haircut and to buy him a new shaver (since the good one he just got last year is MIA) . . . money well spent, for sure!  Oh well, whatever it takes to make him happy!  (BTW, electric shavers are VERY expensive!!)

Our brave boy started chemo on Monday nite . . .he is tolerating it very well . . . the first 3 days he gets 2 kinds of chemo and days 4 thru 7 only 1 kind, and has steroids, platelet and blood transfusions, anti-nauseau medication . . . he feels pretty good, especially for someone being poisoned! We have been told that this first week is the easy part . . . he will start to go downhill by the end of the weekend when his bone marrow is depleted of everything – good and bad stuff – but he will be closely monitored for any complications. The combination of steroids and the chemo has thrown his sugar levels completely out of kilter so he is getting insulin by injection and has to watch what he eats . . . I guess I shouldn’t have bought those cookies and donuts . . . but that should right itself over the next few days as the steroids get out of his system.

His spirits are very good . . . amazingly good! But then, he IS an amazing man! He keeps the nurses laughing and is always asking them trivia questions – they now go home from work and study for the next trivia questions! He is the sunshine of my life and it gives me such joy to see him bring sunshine into other lives!

He has gotten used to walking around while tethered to his IV pole . . . here’s a visual for you: John walking down the hallway of the hospital in a hospital gown (hopefully tied in the back!), in his Superman hat, black socks (I have to remember to take him his Christmas socks) and sandals, face mask, tethered to the IV pole, whistling away and cracking jokes with everyone . . . a real sight!!! That’s our boy!

Oh, someone asked for our mailing address . . . here it is:

7790 Tumblebrook Road
Coopersburg, PA 18036

I hope you are all ready for the holidays!! I, of course, am NOT! But that should come as no surprise to those of you who know me! John always does our shopping and it is something he loves to do (I am too tight with money and just cry as I try to decide what to buy or whom .. . I appear to be a bit indecisive) . . . I am going to try to squeeze in some shopping for the grandchildren but don’t think the adult kids will be getting much, although the good news is that nobody will be getting coal in their stocking this year (that will make Jimmy very happy – he is still traumatized about the year we actually did put coal in his stocking . . . scarred for life) . . .

So, we wish you all Merry Christmas, Happy Hanukkah, Kwanza, or whatever is your holiday of choice (our family is a veritable United Nations of cultures, religions, etc) . . . hug your family close to you and be of good cheer! And try to remember to include any holiday orphans you may know in your holiday plans! And may the New Year bring you health, happiness, and prosperity!

I will keep you all posted as to John’s progress in this journey and as he becomes the bald wonder! I have to keep in mind that the BALD eagle is a majestic and proud synbol of our wonderful nation (although it certainly doesn’t appear to be bald) . . . if a bald bird can be a proud symbol, then certainly a bald (completely bald!) man can be a proud symbol of perseverence, persistence, and the will to live!! I love you, my darling brave man!

Love, laughter, positive thoughts, and prayer!

Linda

Freight trains in the night . . .

Well, as I mentioned before, this isn’t gonna be easy and it isn’t gonna be pretty!  As I wrote my last blog, John was in the hospital with some sort of flu . . . he had bronchitis, flu, and was pretty sick but no pneumonia!  After a week in the hospital and numerous blood and platelet transfusions he came home on Wednesday . . . he called me at 6 AM and told me to come get him NOW!  Unfortunately (for him) I didn’t answer the phone – you may wonder what I could possibly have been doing at 6 AM that I couldn’t answer his phone call . . . and believe me, he certainly asked that question!  And the answer is that I was trying to do laundry so he would have clean sheets on the bed when he arrived AND cleaning up “hershey squirts” left all over by a very upset puppy AND washing all of the bedding from the doggie crates (also decorated with “hershey squirts”) AND shampooing both dogs . . . isn’t that what most of us are doing that early in the morning?!  Yikes!  The only time I see 6 AM is . . . oh, who am I kidding?!  I NEVER see 6 AM! But the day was saved when Andrew went to get John from the hospital while I finished laundry and Valerie sanitized everything in sight!!  Mr. Grumpy was much happier to be home than we were to see him at 8 AM.  But he was happy to be in our bed and was very pleased to get a steak for dinner.

Thursday was spent at the doctor for consult and CBC (now, that’s no surprise) and ultimately a platelet transfusion.  It took the entire afternoon of me running around “putting out fires” to get everything coordinated but I finally had an oxygenator and nebulizer delivered at midnight (poor boy was in bed well before that).

Now, somehow in the wee hours of the morning a freight train managed to sneak into our bedroom and  run over me several times before sneaking out again. . . when I tried to get up and function it was quite clear that the freight train had done a very good job!  So, off to the doctor for me . . . lovely test for strep throat (negative!), chat about taking care of myself and why I hadn’t gotten the flu vaccine, and then – the crowning moment – a 6 foot long q-tip rammed up my nose until it was reduced to a 6 inch long accordian shaped thing to test for the flu!  The brain cells they picked up along the way were negative for anything including life.  I was put on two prescriptions and sent home to rest, as in STAY IN BED til I felt better.  And that is exactly what I did!  I didn’t get out of bed until Monday morning.  Damned freight train!  Oh, and I never did get a call back about whether I have the flu or not . . .

Back to our boy . . . I took him back to the hospital yesterday, Monday, at 8:30 AM, as per instructions.  However, he needn’t have gone so early as no one had actually scheduled him for the Hickman catheter surgery . . . it was finally done at 8:30 last nite – no food, no drink, nothing by mouth since the night before!  He was NOT happy with that!  He has been kind enough to explain proper procedure to all who will listen. 

But, that is all behind us now and he has the catheter in place and is getting chemo as I write this.  He seems very mellow today . . . who took my husband?!? . . . and is writing me loving text messages from his pile of pillows and loving nursing care from the hospital while I try to dig thru a couple of weeks of unopened mail and unpaid bills, etc.  I think I will take a nap and then go over to see him . . . I am still no where near full working capacity and think it best to take it easy for a bit. 

The plan of attack is that he will receive these 2 forms of chemo over the next week via IV; his health and wellness will decline rapidly by the end of this week and he will be monitored closely for any and all complications . . . he will receive a lot of transfusions and probably some antibiotics . . . and then at Day 14 will have a bone marrow biopsy to determine the percentage of blasts in the marrow.  If the blasts are under 5% he will be done with chemo for then, will stay in the hospital for 2 more weeks to be monitored and then home to recuperate; if more than 5% blasts it’s more chemo, another BMB, and another month in the hospital. 

But, I will keep you posted as we go along . . . .

I am taking all of the Christmas and Holiday cards we receive to him in the hospital . . . so keep them coming!

Thank-you all for your continuing love and support as we trek thru this . . .

Love, laughter, positive thinking, and prayers . . . . Linda