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!

Sit, stand, walk...

Marty was far more comfortable this morning with combination of epidural pain meds and morphine drip. His color was in the pink range rather than last evening's gray hue. Before I got the the hospital early this morning, he had already sat up and stood up (with help, of course)! Once I arrived, his very smart and attentive PT assisted him in not only sitting and standing but walking about 5 steps! All of these activities require management of his nasal vacuum tube, catheter, oxygen tube and I.V. connections.

We talked quietly for much of the day, but as the afternoon wore on in the surreal hospital environment, I noticed that he became much more spacey and his hands were like ice. His blood pressure, which is typically low anyway, dropped dramatically. The "pain team" (medical folks who manage pain meds, not an S&M cult) and his nurses adjusted his epidural to lower delivery levels, and he improved very quickly.

Pain meds are a delicate balance after major abdominal surgery. His impressive incision requires enough pain relief so he can move with some measure of comfort. It is important that he can comfortably manage sitting, standing and walking not only to keep respiratory function on a good level, but also to stimulate bowel activity. Too much medication defeats all of the above, as well as diminishing his ability to detect important changes in functioning. Having an advocate on hand (that would be me) helps especially if Marty is too medicated to know he is too medicated.

A member of his surgical team talked with us this afternoon. He described Marty's lower intestinal tract as "looking like a hand grenade went off in there". No wonder he has endured such digestive distress! His insides were a bundle of gnarly adhesions, all of which have now been removed.

Progress is literally step by step, but I am very encouraged by Marty's spirit and resilience, as well as the excellent care he is receiving.

Thank you, everyone, for your kind and thoughtfully brief emails expressing love and support!

Post surgery report

It was a long day for Marty and for me, of course, and I am hoping my weary mind can find some measure of verbal clarity for this report.

The surgery went well, in that a tremendous amount of scar tissue in Marty's small bowel was removed, along with about 16 inches of intestine. Some scar tissue was adhered to his bladder, which required a small hole being made in his bladder. Dr. Froines said this would heal fairly easily as, as he put it, "the bladder is very forgiving". Marty will have a bladder catheter for about a week until the hole in his bladder heals. Psoas nerves were injured, which will result in numbness in his leg, probably permanently.

The surgery was over 3 hours in length. Once Marty was released to recovery, the medical folks had a very hard time controlling his pain levels, which were extremely high. I had waited for him in the surgery waiting room for 4 hours, and then in his hospital room for another 4 hours. At lastI was called to the recovery area to see him, as they were still struggling to reduce pain to "acceptable" levels. Marty was extremely pale, with a huge incision on his abdomen. He was astonishingly clear thinking, despite huge discomfort, and insisted I go home, as I couldn't stay in the recovery room with him. Thus, I reluctantly left him there, in very capable hands, with kindly and skilled nurses.

The length of his hospital stay will depend on how his bowel heals and begins to function again.

My deep thanks to all who sent emails and texts wishing him well for his surgery, and for texts to check up on me while I waited all the long hours. Huge thanks to Matt for his gracious ride to the hospital today. Thanks to Delia for cookies for the nurses, which were much appreciated.

Once I see him tomorrow, I will report further. I am weary to my bones, but also relieved that the issues of concern were addressed, and the scarred tissues removed successfully. No wonder his digestive system has been so very challenged, as the amount of scar tissue was enormous!

More to follow! Thanks again and love to all who have been so supportive on Marty's behalf!

Surgery date and information

Marty and I met his general surgeon today to discuss possible intervention to improve his quality of life. Dr. Froines was calm and clear. He inspired confidence without any arrogance (unusual for a surgeon). In any case, after reviewing Marty's scans and history, he said that surgery to remove adhesions and probably resect the small bowel would most likely improve Marty's level of comfort and quality of life. There is no telling exactly how much of the bowel will need to be removed or how much scar tissue requires surgical attention until he is in surgery with live time viewing of the affected areas.

Thus, surgery has been scheduled for November 29. He will likely be in the hospital at least 4 days, and be home recovering for 2-3 weeks. Discomfort after surgery will be high, as in any abdominal surgery, but more so. Strong pain meds have been prescribed.

Marty also saw his urology surgeon. The kidney stone is not of major concern at the moment. If it hasn't moved within a few weeks, that also will potentially need to be surgically addressed.

Please, no panic or drama, everyone! Neither panic nor drama help us in the least! We will request help when needed, and plan with attention to detail, as we are both skilled at doing. Both of us are relieved that there may be a solution to Marty's continued discomforts, and we are very much hoping for easier daily life after he has recovered from surgery.

Post-hospital update

Following tests and scans and extensive IV hydration, Marty was released from the hospital yesterday afternoon. Although a hospital stay is never really pleasant, this sequence was ultimately quite productive for Marty. The excellent internist who oversaw Marty's care was impressively comprehensive in her thinking and solutions. The result is that the ongoing digestive discomforts and serious difficulties Marty has been enduring for years has been much more clearly identified in terms of cause. Simply put, the extensive surgery to remove the pelvic sarcoma in 2004, followed by 6 weeks of radiation treatment, has caused a bowel obstruction due to scar tissue in the small bowel. This has caused the recurrent cramping, nausea, vomiting, diarrhea and so very much terrible discomfort, as the obstruction basically shuts down his digestive system.

The presented solution, now that the obstruction is clearly identified, is to remove adhesions surgically. We will be discussing this with surgeons further in coming weeks. Although there are risks in this surgery (radiated tissue is more prone to bleeding as the tissue is fragile), we will consider the risks in hopes of improvement of his quality of life.

Scans also revealed a kidney stone poised pre-painfully on his ureter. This also will be addressed in coming weeks.

The internist released him with careful and thorough instructions for his trip to Chicago. She felt he was adequately stable for travel, and understood the importance for Marty to proceed with his plans to see his nearly 95 year old mother.

Marty, Carmella and I slept soundly before his early departure this morning. He arrived safely at his mother's retirement home, only to frustratingly find that the room he has reserved there was not available. Given that he needs rest, ease and quiet, this was aggravating news to say the least, and really the last thing he needs to deal with at present. Arrgh!!!

On other fronts, my mother is home with her right hand in a splint and her left foot in a boot. Thankfully, my parents are in good spirits. My siblings and I are assisting as much as my parents will allow.

Thank you to all who have assisted us with rides to and from the hospital, and for all the kind support expressed. We are coping with skills learned well over the past years, and with the loving presence of so many who are dear to us. Thank you!!!

back to the hospital

Marty had a very challenging week with severe discomforts including excessive cramping, bloating and vomiting. Last night was his worst night ever since surgery in 2004. He vomited every 5 minutes and had very terrible cramping. He went to Urgent Care this morning and was admitted to the hospital for observation and testing.

Marty is getting great care and attention, and is more comfortable now with an IV hydration drip and possible morphine for pain. The internist at the hospital was very thorough, asked great questions, and was rather appalled that we have been living with his limited quality of life for so long. The hope here is that with new thinking and new doctors we can find a cause and a solution to his condition.

Marty has travel plans to see his mother in Chicago this weekend. Although it doesn't seem likely to me that he will be able to travel, he is keen to go ahead. We will see.

Friends and family have been very supportive and helpful. Big thanks to Lindsey and Matt for arranging a ride to the hospital for me! Don't worry everybody, I am fine, and have good coping skills. I know when to ask for help and who to ask for help. We are blessed by good friends and caring family.

Of course, as life would have it, my dear mother fell and fractured her toe and finger, thus rendering her unable to care for herself without assistance beyond my father's loving care. She has been in the hospital also and was just released to home late today. When it rains, it pours.

I will keep you all updated as to Marty. Know that he is in good hands!

We hope for the best, as always.

the continuing story for Marty

Marty has been overall doing better with fewer terrible days and less horrible discomfort. That being said, he continues to often feel quite poorly, although with less frequency of extremes. He has maintained the weight gain of several months ago, which is really great news, but still cannot plan on feeling well for more than a day or two at a time. His spirits are relatively good, which is amazing, and speaks to his resilience and strength as a person with many daily challenges.

His appetite, digestive comfort and energy vary daily. Thankfully, vomiting and severe cramping has been only occasional.

Our social life is obviously limited as we can never tell when his condition will suddenly and inexplicably decline. Going out for dinner with friends is very difficult to plan. Even going out to the movies is often thwarted if Marty feels unwell. The most frustrating aspect for both of us is not only the unpredictable nature of his health, but the lack of any specific cause for his discomforts. If there was a food group to clearly avoid or a means to help him feel better, of course, we would do it! At present, his only option is a hot water bottle on his abdomen when he is feeling poorly, rest and quiet.

Marty has good support from his osteopathic doctor and his medical doctors.

We continue to enjoy our life together and our dear feline family member, Carmella, as well as time with local family members.

We hope for the best and deal as gracefully as possible with the crummy.

Good wishes to all!

Chicago trip

Marty and I flew to Chicago this past week to assist his elderly and much loved mother in various ways. We worked hard, accomplished our intentions, and had some time together to enjoy the neighborhood, as well as precious time with his mother.

The dehydrating conditions of air travel impact Marty quite dramatically. There was also a fair degree of added stress in that the place we stayed afforded very little privacy and many sleep interruptions. Food choices that are most ideal for Marty were also slim.

Marty did quite well, given the above described limitations, while we were in Chicago. Once we returned home, intestinal distress and overall exhaustion hit Marty hard. He is not as diminished in comfort as he has been previously, but still in need of naps, a hot water bottle on his abdomen to sleep, and a generally reduced activity schedule.

At this point, we manage the effects of travel and stress on Marty's condition reasonably well, which is not to suggest that travel is a breeze for him. We learn, constantly, from experience. Our next trip to Chicago will hopefully include more privacy and ease in where we stay so that the stress of travel for him can be minimized.

Marty doing well!

Apologies for long sequence between posts on Marty's behalf! And many thanks to all who have inquired about Marty's health and well-being.

Marty has been doing well for some months now, thank goodness. Although he has some not so great days, he hasn't had any really awful sequences of vomiting and intestinal discomfort. He still needs to have a hot water bottle on his abdomen at night to relieve cramping, and has lots of gurgling and sound effects from his gut during the day that indicate less than ideal digestion. On our days off, he does need a very comprehensive nap. His energy is not at all what it was once was in days before surgery and radiation treatment. But, he has not lost any weight and can eat in a reasonably normal fashion. This is very good news!

We attribute his improved condition to the excellent work of our Osteopathic doctor, and to the good effects of medical marijuana. In addition, his medical team has said that, with time, the digestive system does heal to some extent.

Whatever the helpful ingredients may be, both Marty and I are grateful for being able to live a bit more normally. We still can't plan with confidence given Marty's condition, as his comfort level shifts constantly, but we are both getting more rest, can enjoy daily life together, and are both pleased to be sharing our life without as much distress as in previous months.

Marty continues to be cheerful, optimistic, patient and sweet-natured, as is usual for him. We live a life together of much love and joy, despite all the challenges. We both are grateful for all the interest and concern expressed by family and friends. Thank you!

The ongoing up and down

Although Marty has been experiencing less frequent distressing symptoms, for which we are thankful, he continues to have some really bad days, for which we have no explanation. In other words, the predictability of his difficult times remains mysterious and challenging to fathom. His energy for daily life is somewhat improved, and his color is better, excepting the days when he looks like death warmed over and has to just go to bed with a hot water bottle. On the bad days, he can't work or really function much at all. On relatively good days, he can almost seem like his old energetic self.

This past Wednesday (our day off together every week), he was feeling a bit poorly, but since it was a glorious Spring day, I insisted we go to a local beach to soak up the light and warmth and scents from Puget Sound. We enjoyed a lovely walk on the beach there, and also visited our community P Patch to attend to our garden. These outdoor adventures, as well as an evening walk to a local park, seemed to renew him. Of course, he needed a nap mid-day to be able to manage all this "activity"!

Tomorrow, we celebrate 16 happy years of being married, with a plan for dinner at our favorite local restaurant, Stumbling Goat. Fingers crossed that Marty will feel up to a meal out, to eating good food, and to celebrating our marriage!

Oncology Radiation visit

Today, Marty and I met with his Oncology Radiation team so they could view his progress and assess his current condition. They were thrilled that he has gained 8 pounds since they saw him three months ago!! The hope when he last saw the team was that he gain a single pound. Obviously, he has far exceeded expectations.

The Oncology Radiation team was also happy to see Marty's color much improved, and his stamina a bit more steady. There was obvious relief on all sides.

His doctor recommended no further tests, scopes or scans, as these would likely be invasive, and would add nothing further in terms of understanding his condition. This was also a relief for us, as the scans and tests have been intrusive, expensive and quite time consuming.

And, after our meeting with the medical team, we actually saw a film together, a rare occurrence these days, as all plans frequently go awry with Marty's unpredictable discomfort levels.

Fingers and toes crossed for continued improvement!

Spoke too soon, darn it!

Just when we thought all was improving, Marty feels very poorly again, with several very difficult days and nights. His energy and comfort are at the low end of the spectrum all over again.
Damn! Just when it seemed we had a reprieve!

Tomorrow, we see his Radiation Oncology team. Will report!

More good news!

Marty's bouts of nausea, intestinal cramping and dreary days have decreased in frequency and intensity. He has more stamina for activity, sleeps more soundly, and is generally in better condition all around in the past few weeks. Although we are uncertain what has made the difference in an exact way, we credit both medical marijuana and also his work with our Osteopathic doctor. Whatever is working to improve his health, we are grateful.
He continues to gain some weight also!

He still has difficult days, but improvement is obvious and welcome. He is now riding his bike to and from work daily, an activity that he enjoys and relishes.

We are both cheered with his progress!

Weight gain, hurray!

Marty actually gained a few pounds for the first time in many months! This is really great news as this indicates his digestive system and appetite has benefitted from his work with our Osteopathic doctor and from medical marijuana. There is thus hope that we can begin to reverse his spiral into malnutrition and seriously depleting weight loss.
We will go to see the Radiation Oncology team in a few weeks for new insights and assessment. Since the team was hoping he could just gain a pound of weight, I am assuming they will be thrilled at his progress. I certainly am!

With hopefulness and gratitude, we carry onward!

Marty home from a great trip to NYC

Marty is now home with Carmella and I after his very enjoyable trip to NY and PA this past week. Although he was quite ill for a day there, we are both thrilled that he could manage travel and being away from home with relative ease in his health and comfort. His sisters, Rosemary and Elly, took wonderful care of him while he was in NYC. Friends Doris, Rich and Yeti also took great care of him while he was in PA.
Marty was honored at a symposium at Parsons School of Design while he was in NYC. This was meaningful for him on many levels. He is grateful that he could attend, and very happy he could travel without undue distress!

Carmella is pleased to have her full staff in attendance once again, as two people to boss is preferable to just one!

Marty in NYC

In a burst if health hopefulness, Marty flew to NYC this week to participate in a symposium at Parsons School of Design, and to see his sisters, niece and nephew, as well as many friends. Since this trip is close on the heels of his Chicago travel, he counted on feeling well enough for another long flight (sitting for long sequences is very hard for him in his current condition) as well as for a week away from the comforts of home.

He did pretty well for the flight, and was able to attend the symposium with interest and enthusiasm. Then the dreary sequence of intestinal discomfort, nausea and vomiting resumed and kept him in bed all day today. Thankfully, he is staying with his sister, Rosemary, who can provide a hot water bottle and the simple foods that he can tolerate during this sequence. Of course, it is a deep disappointment for him to be confined to bed while in the city he so enjoys experiencing. He hopes for a better day tomorrow, when he will travel to PA to see our dear friend Yeti in her retirement community.

The unpredictable aspect of his condition is so disruptive to life as he would like to live it. He continues to be appreciative of reasonably good days, and to tolerate his crummy days with good spirits. The unpredictable has become somewhat predictable, weirdly. He endures with grace, and is ever uncomplaining.

Marty in Chicago

Marty is enjoying a lovely visit with his dear mother in Chicago, and is feeling pretty well! He needs a hot water bottle on his tummy at night to diminish cramping, but this is easily accomplished. Hoping for easy travel home for him with no delays and also minimal discomforts for Marty.
Carmella and I will be eagerly awaiting his return, of course, and have home and food prepared to welcome him.

Rough week, then travel

Marty had a challenging week with return of intense intestinal cramping and nausea. This meant missing work and remaining in bed for several days. He looked and felt washed out and weary. There is very little that I or anyone can do for him when his condition deteriorates in this way. All that helps is sleep, preferably with a hot water bottle on his abdomen. Carmella the cat keeps him company in her fat feline fashion.

This morning, Marty got up at 4am to make his flight to Chicago, where he will visit with his mother. (Since my mother here in Seattle is very ill, I could not go along with him.) In any case, Marty got to the airport and found that his flight was cancelled, which meant he had to wait hours at the airport. This was very hard for him as he was not feeling in any way back to full steam. He is really frustrated with his physical limitations for any travel ease, and of course, even in good health, air travel is difficult currently.

Once he gets to Chicago, I am hoping he can rest a bit and enjoy precious time with his 94 year old dear mother. I will report as things go along!

Report on Marty's Birthday

Thank you to everyone who called and/or emailed birthday wishes to Marty!
He had a not so great day in terms of physical comfort, but he did enjoy birthday cupcakes, baked by his kind co-worker Serena, and worked the day without too much distress.

After work, I met Marty at our local favorite restaurant, Stumbling Goat, where the owners had his seasonal blood orange drink awaiting his arrival. We both enjoyed a very delicious meal, and walked home with the crescent moon watching us from the western skies.

Unfortunately, he paid for our meal by being ill much of the night. This is how life goes for us lately. Enjoyment of food is followed by cramping, nausea and vomiting. Still, he has been sick much less often since we have had the cannabis option.

Marty slept in a bit this morning, and seems weary but better today.

Marty's birthday

Marty has a birthday tomorrow, March 6. Please send him emails and voice mails and many happy wishes.
I will be taking him out for dinner at our local favorite place, Stumbling Goat, for a meal that he can hopefully enjoy to some degree.

Marty has had a run of pretty good days. We have been able to sleep at night and he has been able to work by day without excessive discomfort. As always, we hope for the best and adjust to the worst.

The Limits of Herbal Help

Lest people think that the medically prescribed cannabis is solving all of Marty's problems, I am sorry to inform you that it is not the case. The baked goods and tincture help his nausea and cramping on "good"days. Once he is having a not so good to terrible day, the cannabis products have no positive impact.

If we had any notion of what sets off his episodes, or what sort of pattern of timing was involved, we could at least take some preventative measures. The frustration of all this is that we have no clue about cause, timing, or patterns. Planning for life is rather impossible. Marty might feel relatively well for days then suddenly be too sick to get out of bed.

We had a run of functional days in the past weeks, then the hammer of nausea, vomiting, cramping hit again. Every episode of this sort depletes him further, and costs him calories, hydration, sleep and stamina. Astonishingly, he continues with some small measure of optimism.

We go day by day, hoping to sleep, trusting he can work, finding serenity in the most surprisingly small details.

Evidence of Progress

Although the medically prescribed marijuana is not making everything OK for Marty, it is making some difference in the quality of life he can enjoy.
This past week, Marty and I went out for dinner together for the first time in many months. Typically, Marty comes home from work with nausea and intestinal cramping, so we skip dinner and go to bed early. He rarely feels well enough to go out for a meal. But this past week, due to cannabis tincture and baked goods, his nausea and cramping calmed enough for us to dare a meal at our favorite local restaurant, Stumbling Goat. Although I accomplished the far greater percentage of the eating, Marty did enjoy some of the meal, and only suffered slightly with cramping afterward. Plus, of course, he was great company.

Progress toward fuller energy and health is incremental and slow, but seems to be going more in the positive direction now. Osteopathy is also assisting Marty's health. The subtle adjustments and comprehensive rebalancing that Osteopathy offers is gently urging Marty's system toward a healthier response.

As always, we hope for the best with cautious optimism, welcome the good days with appreciation, and look forward to any indications of improvement.

The Dispensary Experience

Never a dull moment around here! My mother is in the hospital with complications due to congestive heart disease, thus necessitating a shift in priorities for time, attention and energy.

Marty has been on the fair to good part of the wellness spectrum during the past week. He rarely has much appetite and deals with cramping and nausea, but not to a debilitating degree. Thus, a small but welcome reprieve!

The two of us went to the dispensary for medically prescribed marijuana today. To say that the dispensary is well hidden in a very non-descript location puts it mildly. Anyway, we found our way there, pretty much by happy accident, and we were buzzed in after displaying ID cards at the door camera.

Once inside, we found ourselves in a friendly, light-filled cheery environment. The staff were wonderfully helpful in making suggestions for products that would potentially address Marty's nausea and lack of appetite. Marty expressed a strong preference not to inhale smoke. We were then urged to consider a vaporizer (not available at this location, though they did have some huge bongs) for future consideration. Apparently, this is the most effective means for marijuana to be useful for someone in Marty's condition. Since we don't have a vaporizer (yet), we were sent home with: 2 baked confections (to be split into quarters), two lollipops, and a honey based tincture. Since Marty had some intestinal discomfort while we were in the dispensary, he tried a dose of the tincture right there and then. Within several minutes, his intestinal rumbles calmed a bit. Hurray!

Of course, we will keep close track of what works and what doesn't and how much and when etc. The tincture doesn't make him stoned, by the way, so he can still work, drive, converse and make decisions. The baked goods are recommended for evening use to encourage sleep without nausea or cramping.

And so with cautiously hopeful attitudes, we carry on!

Two Interviews

Since Marty saw Dr. B, our Osteopathic and TCM (traditional Chinese medicine) physician last week, he has been feeling a notch better, looking a bit more bright eyed and with better color, and seemed to have somewhat improved energy and appetite. Every improvement, even seemingly minor is welcomed enthusiastically! A trend for improvement is what we cautiously hope for in coming months.

Today, Marty and I went for two interviews in the interest of improving his health by whatever means possible. First, we saw the medical marijuana intake person. Primarily, this was to get Marty's ID card for medical marijuana, and to learn more about how the system works. We were advised to try a tincture form rather than smoking or eating, as this would be easier to dose accurately. Eating baked cannabis goods is not ideal for Marty as he does not absorb nutrients at all fully. We were given directions to the dispensary, which sounds like an old fashioned speakeasy, in that we ring the bell of an unmarked doorway, show our card to the camera, and then get buzzed in. Very noir! Trench coats and fedoras may come in handy.

Next, we met with the dietician at Group Health. It seemed like she was a bit overwhelmed with how much information we already had on hand. In addition, Marty is far from her typical patient, even for someone who has had cancer. He is not currently having chemo or radiation, he does not have cancer, and he is, of course, unlike most Americans, not overweight, diabetic or generally unhealthy other than being malnourished. She seemed impressed by how many nutritional directions we have already explored, and saddened by how depleted Marty is despite all our investigations. We did not fit her patient profile and she couldn't offer much help.

She came up with several ideas to explore: 1) keeping track of what sort of carbohydrates Marty is ingesting in case that spectrum is encouraging bacterial over-growth, and thus inflammation and 2) investigate diets that are recommended for IBS. Although we have done this in the past, we are willing to revisit the IBS diet scenario again. As previously stated, by any means possible. We carry on with vaguely new information.

Thanks to Delia for cookie deliveries for Marty, Lindsey for keeping me happily fed and wonderfully strong, Linda for supplying salt from Kauai, and students, friends and family for kindness, humor, consideration and concern. We appreciate you!

Osteopathic input

Today, Marty saw my Osteopathic Physician and TCM doctor here in Seattle. Dr. B had been tremendous help for me in recovering from my fractured patella, and although he does not accept new patients, he had kindly offered to see Marty.

Dr. B believes he can help Marty with underlying causes of his discomfort, and over time, improve his health to some extent. He was reassuring and encouraging, without being unrealistic. Marty looked much more bright eyed after his time with Dan, and seemed far more at ease.
Of course, any improvement from Marty's terrible distress of yesterday is welcome!

Both of us are cautiously hopeful, relieved that Marty is more comfortable today, and much in need of sleep.

Delayed Appointments

Marty and I had appointments scheduled for today for interviews with the medical marijuana pharmacy and Group Health post-cancer care dietician. Unfortunately, Marty awoke with severe intestinal cramps and overwhelming nausea and is unable to leave our apartment. Both appointments were re-scheduled until a week from today.

When cramping and nausea set in, all Marty can do is stay in bed. A hot water bottle eases the cramping to some degree. Only vomiting relieves the nausea, and cannot be forced.

He is very depleted and weak, pale and thin and exhausted. Sleep is typically restorative for him, so hopefully the discomforts will quiet enough to allow him some rest.

Historical context

For those who are reading this blog for the first time, I am clarifying Marty's medical history so you have a context for his current condition.

In February 2004, Marty had surgery to remove a large pelvic sarcoma from his lower abdomen. The surgery was long and complicated, and performed by 3 excellent surgeons. The tumor was removed intact with clean edges and minimal damage to his organs. After days in the ICU and several weeks in the hospital, Marty was sent home to regain strength before beginning radiation treatment.

In late March 2004, Marty began 6 weeks of daily radiation to make certain all cancer cells were obliterated. When he was released from Radiation Oncology, the chances of the cancer returning were termed "statistically insignificant". Tests, scans and exams have supported that prediction, thankfully. Other than his digestive issues and weight loss, he is in surprisingly good health.

Initially, Marty recovered strength and energy reasonably well. However, about a year and a half after radiation, he began to experience occasional bouts of severe digestive discomfort. Intestinal cramps and vomiting were the most distressing of the symptoms. Thinking this was a dietary issue, we made many changes to his food intake. No dietary change seemed to improve the symptoms. As months and years progressed, his discomfort increased in regularity from every now and then to nearly every day. The past two years have been particularly challenging for him. He has lost alarming amounts of weight, inches in height, much of his muscle mass, as well as his stamina and energy. Life has become quite unpredictable for us, as we never know how well or ill he will feel on any given day. Incredibly, he continues to work, although there are many days when he goes to work late or comes home early. We are beginning the daunting task of applying for disability so that we are prepared should he be unable to work.

Marty's spirits have been remarkably resilient for most of this arduous journey. Lately, however, his optimism wears thin, understandably. He remains the World's Sweetest Man, in my opinion, but sustaining good cheer in the face of frequent nausea and painful intestinal cramping has worn him down.

We continue to enjoy the details of our life together. Our cat Carmella, who came into our family just previous to radiation treatment, is a great source of daily joy and nightly company. In the warmer seasons, we garden at our community P-Patch, growing vegetables that he can eat with some degree of ease. Our local nieces and nephews provide continuing delight. We laugh when we are so inspired, and take each day as a gift.

Yes, of course, this has been very hard for me. The experience has, however, given me confidence not only in my own strength and resilience, but in the wonderful support from friends and family that has been so generously and lovingly provided. I am conscious of my limits, and will request assistance when needed.

I do emphasize that the issue is NOT a recurrence of cancer, but the cumulative effects of treatment for cancer.

I will be posting on this blog to inform everyone as to any significant news. Although we love hearing from friends, please understand that I haven't the time, energy or attention span to attend to emails or calls with any frequency. Any comments left on the blog will be seen by both of us.

And so, good wishes for health and ease to all who are reading this blog!

Some good days, some not so good days

Marty and I welcome the days and nights when he is not in terrible discomfort. These are called "good"days, relative to the other sort, which are rather torturous for him.

He had several "good" days this week. We did our errands with ease, saw local family members happily, and even went to the movies together. Marty's energy is nothing like it used to be, even on a "good" day, but we make the most of his respective ease when we can, and do our best to enjoy a normal life, even though nothing about the life we are living is really normal. Sleep is currently our favorite sport. There is never enough, but we pursue it with dedication.

Now, his days are not so good. Intestinal cramping has returned, and given recent history, nausea and vomiting will follow soon. Sleep becomes a necessity that we can barely accomplish.

We deeply hope that our meeting with a nutrition expert next week will provide some guidance for comfort, as well as for potential weight gain for Marty. The cramping and nausea deplete him further as eating becomes ever more challenging for him. The lack of nutrition only increases his discomfort, as his tissues become less and less resilient without food.

My thanks to kind friends who have provided contact information for nutrition experts, Qigong instructors and general support. Your efforts are deeply appreciated!

Thanks to all!

My thanks to all of Marty's people who have responded to my email with helpful ideas and support for Marty and I! We are so very lucky to have loving friends and family.

I am also grateful that the emails have not required a response. As stated in my email, I have plenty of tasks daily besides attending to email.

Marty has enjoyed several "good" days, which are a great gift. We will see a nutritionist at Group Health next week in hopes of some constructive guidance so that Marty can gain a bit of weight and be more comfortable. It is of course ironic that someone who formerly enjoyed eating as much as Marty did now has such a challenge in eating. Also ironic, of course, that someone like me who loves moving endured two years of recovery from a broken knee, but this isn't about me. Ironies abound in life. Our only choice is in response.

We also have an interview set up (can't wait to hear the questions!) to be able to obtain medical marijuana for Marty. Break out the lava lamps and the Pink Floyd albums!

I will post whenever there is news to report.

With gratitude,

Jeanne