Back to work!

Marty returned to work at the hardware store for a brief shift yesterday. He did well in terms of his energy, and his customers and fellow kindly employees were happy for his return. He hopes to return full time very soon.

Although Marty does have some minor continuing intestinal discomfort, it is nothing like the extremes of discomfort that he experienced prior to surgery. He is eating a wider variety of foods without consequence, sleeping better, and in general feeling more like his old healthy self. I would like his color to improve from grey to pink, but given time and better nutrition, we are hopeful.

We wish all the best for the New Year of 2012. Thank you for your support and interest!

More on kidney stone removal

Marty spoke with his urology surgeon this morning to clarify the procedure for kidney stone removal. Dr. Zink wants Marty to recover fully from his recent surgery prior to any further intervention. Marty will see him later this week to schedule the procedure outlined below.

Basically, this will be a day surgery. Marty will be put under anesthesia. Then, a scope device will be inserted into his ureter. The stones (there are a group of them) will be broken into smaller bits and removed back out the same way the scope came in. Kind of kidney stone spelunking.

His recovery is described as straightforward with no major considerations except obvious discomfort from having incoming devices in the channel designed to be outgoing only. He should be able to return to work easily.

Marty and I look forward to this like we welcome holes in our heads, but also realize that the procedure is necessary. Leaving stones wandering in the kidneys is, to say the least, a terrible idea from which no good can result.

I think we need a surgery punch card in our household. Once the card is fully punched, then a free surgery! With Marty's two surgeries, my hernia and two knee surgeries, and his upcoming kidney stone procedure, we should be well on our way to a lobotomy for me!

Urologist report: more surgery

Marty's urology doctor viewed the x-rays taken yesterday. He emailed Marty today to indicate that Marty will have to have yet another surgery, this one laparoscopic, to remove the kidney stone that is sitting on top of his ureter.

Ok, excuse me now while I go scream.

A word from the narrator..

Greetings all!

Just in case you believe my sanity is intact, this photograph should set you straight. Coping skills over many years with family illness do exact a cost, and my sanity was unreliable anyway.

I appreciate concern expressed for my well-being. Thanks to local friends (Lindsey, Delia, Magali, Jean) and far-away friends (Robert, Jay, Deborah, Yeti, Pam, Tully), I have what I need for humor, support and grace.

Perfectly prepared Americanos plus intelligent and witty conversation with Chris begins every day with a smile. Canine friends both at Lighthouse Coffee and throughout the neighborhood and in my office raise endorphin levels significantly.

My health care team is taking excellent care of me. Some stress related physical symptoms have emerged quite annoyingly. Thankfully, I am well supported and finding relief.

It has been a very lengthy journey since Marty was diagnosed with a pelvic sarcoma in January 2004. Just a note that I fractured my patella in February 2009, an injury that required two surgeries, extensive rehabilitation, and over two years recovery. There was a significant period where I couldn't walk and Marty couldn't eat. This might provide context and historical perspective......

Hopefully (all digits crossed) relief is in sight! I may soon enjoy a life with Marty without overwhelming health concerns, dietary limitations, sleep disruptions, and staggering health care costs.

Then, I will be able to enjoy insanity for its own sake rather than as a response to life.

The latest

Post surgery recovery continues for Marty. Although he does experience some intestinal cramping, this is nothing like the severity of discomfort prior to surgery, and resolves fairly quickly. His color and stamina improve daily.

The kidney stone poised pre-painfully on his ureter has not budged. Since we don't want any unpleasant surprises, Marty will have x-rays tomorrow for his urologist to review.

Although portions of his right thigh remain numb to the touch due to surgical nerve damage, the function of his leg is fine. We are hoping that some nerve regeneration may occur in time.

Marty, Carmella and I wish everyone ease and joy for the Holidays!

Onward by increments

Marty continues to improve in stamina and strength day by day, bit by bit. He plans to return to work in the week after Christmas.

He sleeps reasonably well, has been eating a medium range of foods, and has been active during waking hours with gently increased daily demands. He reports that his incision area often aches and pulls, so he is understandably reluctant to press activity beyond levels of comfort.

We will spend the holidays with local family, see some films, relax at home with Carmella.

We send our best wishes for peaceful holidays to one and all!

The spiral of recovery

As in recovery from any injury, surgery, habit, trauma, loss, or just plain life, progress is rarely linear. Instead, it is typically a wavering uneven spiral of reversals, progressions, perceptions and shifts. The expectation to return to some sort of "normal" is usually based upon faulty sensory perception and a dose of wishful thinking.

Marty experienced cramps and digestive distress yesterday afternoon and evening for no specific reason that we can identify except readjustment of his gut post- surgery. The small bowel was quite distended with scar tissue. About 18 inches of small intestine was removed. These factors alone would spell an interior struggle to return to elasticity and function that could result in discomfort.

Marty has not regained any appetite whatsoever. This actually also makes sense when we consider his dramatically limited diet of recent months and years. His olfactory and digestive systems have had a narrow experiential range, and thus a limited response. I have unwittingly added to this scenario by simplifying my own food preparations. Now, I will attempt an indirect effect by resuming the savory vegetarian cooking I have enjoyed for myself in the past. Hopefully, scents and sights will provide an expanded range of signals, and thus stimulation for his appetite. Plus, I need to eat more.

Now, a word about phone calls and timing: we go to bed early because we get up early. Also, we are tired. Since we have 3 elderly parents between us, we leave the phone ringer turned on, despite our early sleep mode. Calls after 9pm wake and startle us. If you are considering calling us in the evening, check the time. If it is after 9pm, send an email instead, or just call tomorrow. Thank you!

Increased activity levels

Marty today walked about 1/4 mile to meet with his friend Roger this morning, then another mile up to the hardware store. And, incredibly enough, he then walked all the way home! Although he was a little weary, he was not exhausted. Great evidence if his recovery in stamina!

While I was at work, Marty washed the laundry and prepped the food for dinner. This to indicate not only his thoughtfulness and participation in household tasks, but also his increased energy.

We ate a simple dinner together this evening. Although we are not challenging his digestion too quickly, he is able to eat more food without dire consequences. This is a huge relief for both of us!

Onward and upward!

Post surgery meeting with doctor

As previously stated in this blog, Marty has an excellent and very attentive group of doctors caring for him. His primary care physician, general surgeon, urologist and oncologist are all smart, personable and deeply committed to Marty's health and well being. We are grateful for the skill and dedication all of them bring to Marty's care.

We met with his surgeon today for a post-surgery discussion and examination. Marty's incision looks good and is healing well. The nerve damage (affecting his leg) that occurred during surgical removal of extensive scar tissue should resolve in time, according to Dr. Froines, and Marty's digestion is also likely to have continued improvement. Dr. Froines encouraged daily activities within limits of comfort, but no weight bearing for at least a couple weeks.

We came home for a celebratory lunch time snack. We celebrate 21 years together today, and will cook an appropriately festive dinner to share this evening. The best part is that Marty will be able to eat a tasty meal without painful consequences!

And further progress...

Very happily for Marty's comfort and mobility, the Foley catheter was removed yesterday. And, he took the bus on his own to the doctor's office, which is evidence of his steadily increasing stamina.

Although he still can't lift any more than very minimal weight due to his impressive incision, he was able to drive me to grocery shopping this late afternoon. I am taking this opportunity for bone density weight bearing activities via groceries. If he can drive, I can schlepp.

Marty has far less intestinal discomfort than he did previous to surgery, for the obvious reason that a huge amount of scar tissue in the intestinal tract was removed. However, we have not overly challenged his system with very fibrous or dense foods (e.g. cabbage family, red meats, whole grains). We are going along carefully and gradually in dietary choices for him. Thus, his diet remains rather bland, low residue and light. Before surgery, even plain pasta potentially caused discomfort, as the scar tissue wound more tightly with even the most bland food. Now, at least he can dare baked potato (not the skins), salad, cooked vegetables, and fish, without serious consequences. He has far less cramping, no nausea, no vomiting, and less gurgling and rumbling. He can sleep through the night (as, thus, can I!) without incident. This is nearly miraculous after many years of disrupted sleep and awful discomfort.

Tomorrow, we will see his surgeon for a post-surgery discussion. Of course, I will report on any significant details!

And a further Sunday report

Marty managed to go downstairs and outside to repair the windshield wipers on our ancient Saab (pictured here from last Spring). He also took out the recycling and garbage and helped me clean the apartment. Although these may not sound like hugely demanding activities, they all required stamina and strength for someone in early stages of recovery from major surgery.

After our very kind and thoughtful friend Jean drove me to the grocery store and home again, I took myself out to the movies by bus. While I was out, our dear friend Kenny brought Marty a pile of books! Kenny is our best source for reliable book recommendations, as well as my excellent haircutter and all around great person. Thank you Kenny and Jean for your kindness today!!

Marty unfortunately experienced some cramping and digestive distress this afternoon, for no reason that we can figure. This puts us on alert that all may not be predictably smooth sailing. as we had hoped.

He will go to the urologist tomorrow and, fingers, toes and legs crossed, have the catheter removed, which would increase his level of comfort enormously. Everybody, cross your legs for Marty!

Back by popular demand...

Hi everybody!

Isn' this a cute picture of me? Thanks, I think so too. Jeanne and Marty call this my "cute-ing" move. Then, I can get them to do pretty much anything I want! Ha!

But enough about me, let's get back to me and Marty. I am in charge while Jeanne is at work or out doing errands. Actually, I am in charge when she is home also. The point being that I can tell Marty feels a bit better every day, with more energy and stamina. He doesn't nap as much, talks on the phone more, and has reorganized his desk area. He hasn't yet left the apartment building since he came home from the hospital, but will do so to see his doctor tomorrow.

Jeanne sleeps long and deeply for the first time in ages. She still has that worried and weary edge; more cute-ing by me will surely help!

Got my work to do, must roll over and bask in their adoration!

Thanks everyone for attending so well to Jeanne and Marty!

Yours truly,

H.R.H. Carmella

The Gratitude List

I am deeply grateful for folks who have tweeted, texted, sent thoughtfully brief emails, and even sent cards wishing Marty and I well before surgery, during his hospital stay and after his release to home.

Thank you also to the good kind people who provided car rides to and from the hospital, made cookies for nurses, thoughtfully provided books and magazines for hours of medical wait time, made me laugh or allowed me to blather. Thank you to people who kept in touch daily, by various means, so that I would have a touchstone of normalcy and humor.

Thank you to my dedicated students who patiently endured re-scheduling as well as my rather exhausted demeanor.

I will thank surgeons and nurses in other formats, but I am grateful for their skilled work and compassionate care.

Marty gets a little stronger every day. He can eat, sleep and move about with increased range. His Foley catheter will be removed on Monday, thus vastly improving his comfort. He is in good spirits and enjoying Carmella's company during the day. We all treasure each other's company in the evening. We sleep well and awake grateful for life, health and the kindness of friends.

Further progress evidence

Recovery continues at home on many levels. Of course, Marty sleeps much more deeply at home than in the hospital. And since the surgery removed the gnarly mess that had caused him so much discomfort, he sleeps even better than previous to surgery. Intestinal cramping and continuous vomiting are no longer issues. This is a huge relief!

Although he takes lengthy naps, he is up doing non-weight bearing projects for much of the day while I am at work. Marty can go up and down our 3 flights of stairs, slowly and carefully, several times daily. He is also understandably tired, and runs out of steam quickly. Then he wisely rests.

The best news is that he can eat just a bit more widely than his formerly very boringly restricted diet without ill effect. As his intestinal tract heals and recovers, we are hopeful that he can enjoy a normal, healthy diet much like we ate before all this distress began years ago,

Many fond and deep thanks to Jay who so very thoughtfully and kindly sent a package of classic films on DVD! What a great recovery gift!!

Thank you also to Delia for magazines for Marty and chocolate for me!

A word from Carmella..

Hi everybody,

You have likely heard about me, as I run Marty and Jeanne's household with a velvet paw.

It is such a relief to have my full staff available once again! I missed Marty not only for myself but for Jeanne. It takes a village to see to me, and I am attentive to the village!

Anyway, Marty seems much better after he bathed and ate today. He sleeps a lot, which presents me with many opportunities for warmth. Jeanne is much more calm and at ease now that he is home. And everyone can play with me, hurray!

Thanks to all the people and animals who have cheered and supported Jeanne during this time!

Love,

Dame Carmella Marie Barrett Spiegel

the home report

Although it was a little dicey last evening to get Marty in and out of a vehicle and then up 3 flights of stairs, we made it, he is home now, and healing thus continues.

He slept well in our own comfy bed without hospital noises, lights or interference. Carmella and I successfully kept him warm.

Given that this is his first day at home after major surgery and an extended hospital stay, his activity level was impressive. He collected the mail (3 flights down and then back up), cooked his own lunch while I was out to appointments, sat at his computer to check email, and reorganized his desk. That is a lot of stamina and strength for a person just out of an abdominal surgery! Don't worry, people, I am not letting him wear himself out, just happy that he is coming along so well.

We are taking this very step by step, moment by moment. As the landscape changes with his continuing recovery, I will request anything we need directly by email, text or phone.

Our thanks to you very dear people who have sent thoughtfully brief emails, texts or voice mails to express support!

Home at last!

After I finished teaching today (I had returned to full working hours yesterday), our friend Matt picked me up and drove me to the hospital to bring Marty home. Marty was all dressed and ready to roll. We said farewell and thank you to his nurses, all of whom deserve medals and an increase in pay, and good bye and good luck to his roommate, then onward to our home!

Marty walks slowly and carefully, and looks understandably weary and worn. Once he can eat, rest and unwind at home for some days, under Carmella's fine supervision, I am hoping some measure of his strength and stamina will return.

Many thanks to Matt for braving rush hour traffic on Marty's behalf!

Fewer tubes, more food....

Marty was "upgraded" to soft foods today, such as custard, yogurt, sherbert today. He had a little hot cereal and a few bites of orange sherbert. He proceeds cautiously with food intake.

His epidural for pain med delivery was removed, as was his I.V. morphine drip. All pain meds (he is currently only taking industrial strength Tylenol) now taken orally. He retains an I.V. hydration drip until tomorrow afternoon, when he is scheduled to come home!

Transitioning from hospital to home is a mixed blessing after an extended hospital stay. He will enjoy privacy, quiet and comfort, as well as Carmella's company. He will also have less skilled care and nursing attention and more challenges in caring for himself. It will be a readjustment for both of us as we figure out what he needs for continued recovery on a daily basis.

Please give Marty the time he needs to adjust to home life and continue to heal; allow him to call you. Also, the "no visitors" request remains. Thank you for putting Marty's recovery and our serenity first!

Thank you to all the dear people who emailed, texted and sent messages in other formats to cheer and support me and Marty while he has been in the hospital! You're the best!

We have gas!

Celebrating flatulence here in hospital land!

Marty's gut has woken up enough for him to cautiously proceed with clear liquids. He requested vegetable broth, and enjoyed some teeny sips without event.

His surgical team believes he is doing well, but they don't want him to rush intake of fluids so that his digestive system can be gently eased into further activity. He is more tired today, which the surgical team explained as the wearing off of both surgery drugs and necessary adrenaline. Despite his more weary state, he went for two extended walkabouts with me in his fashionable hospital get-up, and with his I.V. pole as trusty company. His bladder evidences healing to the extent that he may be freed of the catheter before he returns home, which is great news indeed.

His excellent nurses and PCT's are deeply kind and skilled, and have extended their warmth to me as well. I am very grateful for their great care of him, and touched by their kindness to me.

We are hoping for release either Tuesday or Wednesday so that he can continue his recovery in the comfort and quiet of his own home, with Carmella in charge of both of us rather than only boring tired me.

Walkabout as escape method...

In the surreal hospital environment, lighting, noise and lack of privacy are all challenges to serenity. When I arrived to see Marty this morning, he was sitting in his chair looking quite well for a person with major surgery just a few days behind him. His surgical team arrived, and declared his progress quite good. However, after listening to his gut, they advised going slowly on liquids by mouth, so no popsicles or broth for him yet.

His roommate had a huge crowd of visitors and Fox News on full volume. So, with his nurse's permission, I took Marty and his I.V. pole companion out for a lengthy walkabout escape. Nothing like loud discussions of football and Fox News to get him moving quickly and with purpose! I am, of course, providing Alexander direction to keep him from pulling down as he walks.

After our hallway walking tour, I gave him a sponge bath and dressed him in clean gowns and socks. He's some sort of fashion statement in green striped snap-on flowing garments with I.V. lines as accent and hospital non-slip yellow socks.

We are hoping for a Tuesday release if gas production goes well. No this is not fracking support, but farting enthusiasm.

Oh, and Marty was able to sing on the phone to my sister for her birthday, which is evidence of improved abdominal engagement.

Here's to singing and farting!

One less tube, hurray!

Marty was sitting up in his bedside chair when I arrived at the hospital today. He had already been out for two lengthy hallway jaunts, and went out for a third walkabout shortly after my arrival.

He has reduced morphine drip use significantly in hopes of healthy gut activity. As you all likely know, opiates suppress intestinal actions dramatically. The delicate balance of controlling excessive pain and recovering interior functions thus proceeds.

The nasal vacuum tube had been disconnected for some hours as most of the yucky gunk (technical term) from his stomach had been effectively removed. This was important as any remaining gunk would make him very nauseated. Vomiting after extensive abdominal surgery is not an experience anyone wants for Marty! A member of his surgical team removed the nasal tube (a distinctly uncomfortable but thankfully swift procedure). Much relief for Marty to be free of the invasive and noisy nose tube!

He will attempt clear liquids tomorrow, meaning broth, apple juice and a popsicle. He is especially looking forward to the popsicle as he has a well developed sweet tooth. If the clear liquids go well, he can slowly proceed to more solid food. Once he passes gas and can take pain meds by mouth, and thus relinquish epidural and drip pain meds, we can consider the wonderful prospect of his return home! No sure date for that happy outcome yet.

In addition to above considerations, Marty has to have the strength to walk up stairs, as we live in a 3rd floor walkup apartment. Given Marty's determination and spirit, I am confident he will make steady progress in this regard.

His nurses and PCT's are kind, skilled and very smart. Marty is humorous with them, and they all not only enjoy him, but are also deeply interested in his progression to full healing.

Carmella prefers her full staff available, of course, and is eager for his return. She is keeping me company in her amusing and delightfully demanding fashion. We are both looking forward to our family being reunited at home.

Thanks to Lissa for her kind ride to the hospital today, which gave me more time with Marty.

Further Progress:remarkable Marty!

When I arrived at the hospital today, Marty was sitting up in a chair, and had already been for a hallway walk with his lovely PCT (patient care technician). The oxygen tube in his nose has been deemed unnecessary, so he is a little freer to move. Pain is well under control.

Once I was there, his PT arrived and took him for another hallway walk. He was really cruising along with his I.V. pole! She also gave him a series of chair exercises to keep his legs strong and to stimulate both breathing and bowel activity. I added my Alexander 2 cents, of course..

No intestinal activity yet, so he still has the very uncomfortable and restricting nasal vacuum tube which draws gunk from his stomach. Given that he is able to walk more, intestinal rumbles will hopefully follow relatively soon. Then, he can get rid of the nasal tube, take in clear liquids by mouth, then actual food, and, when he passes gas, come home!

The bandage on his incision was removed this morning so I could view his 8 inch incision. Very Frankenstein! Maybe Young Frankenstein!

His nurses are terrific, and of course he is a charming and delightful patient. His spirits are good!

Thanks again to Delia for cookies for the nurses (a big hit!) and for all who have expressed concern and support via email and text. We are blessed with wonderful family and friends!

Carmella and I are doing well. We are eager for his return home, but sleeping and eating and playing in the meantime.

Please: No Visitors

Local people, please have consideration for Marty and do not visit with him in the hospital. Once he is home and rested and does not have to wear a flimsy hospital gown with tubes connected all over his weary self, then visits and phone calls will be possible. Now he needs sleep and privacy, or as much sleep and privacy as one gets in a hospital. If you care for Marty, please do not visit.

Those who disregard this request will have to deal with me in ways you really wouldn't like very much. Enough said!