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!