Just a little bit about my art and life in general....

Tuesday, May 4, 2010

Spring comes ...

We survived our ordeal at the hospital but not without emotional and a few very real scars. It was a place of seemingly endless torture though ironically we were so dependent upon them for daily survival.

Everything seemed to be going so well with his first round of chemotherapy. The side effects that we were so dreading were really not as bad as expected. Mark was pretty much couch-bound since learning that the pain he endured on his hip and back were due to bone metastasis. He was reluctant to leave the house much even to go to work because both the discomfort and his feeling rather fragile. Looking at the scans and seeing how the cancer had invaded his spine I couldn't help but shared his concern though worried over his lack of mobility. We had visitors during this period which included my mom and her husband and then soon followed by Mark's parents from MI and brother from LA. That visit went smoothly coming several days after his first treatment. Mark went into work for a few hours while his dad and I looked for a recliner chair to make him more comfortable at home. Mark was no longer comfortable sleeping in a bed and had moved downstairs to the couch. But the couch being a bit older wasn't quite so comfortable. The chair worked well and Mark seemed happy enough to spend the better part of the day and night there.

In the midst of this turmoil our families visited with Mark. We celebrated Isabelle's 9th birthday and even a little Chinese New Years with the cousins and my sister. On Monday February 16th the house was quiet again with everyone gone home. On Tuesday evening Mark started coughing up blood and we were off to the local emergency room. It was a terrifying experience and I was sick to my stomach as I drove. We returned home after midnight while the girls slept soundly. Wednesday we drove all the way to Beth Israel Hospital as he began coughing up more blood.

They gave him an IV and hooked him up to the heart monitors. He must of had a CT or x-ray but I don't recall this. We waited several hours wondering what was going on. Mark had stopped coughing up the blood. They administered heparin which I questioned but evidently he had small pulmonary embolisms in his lungs. Giving him heparin while he coughed up blood (hemoptysis) seemed like a bad idea to me. He was also diagnosed as having pnuemonia and put on antibiotics. Around 7 pm they were working on moving him to the east campus to a room to stay in overnight. I rode with him in the ambulance but we were delivered to the wrong room. It was no wonder we weren't visited by any nurses. I asked for pillows to make him comfortable but none arrived. I was anxious to have him situated because I planned on returning home to the girls that night. I had no idea of the seriousness of this situation or I would not have left him. Eventually in my visits to the nurses station we discovered that Mark had been misplaced (i.e. put in the wrong room by the Ambulance EMTs) . Finally someone visited us. What would have happened if I wasn't there, I wondered? And so I was off to home. Somewhere in the middle of the night I called to check on Mark. He had started coughing up more blood and was moved to the ICU.

After getting the girls situated (it was winter break week) I rushed back down to Boston again. I found Mark in the ICU and was happy to see him. He was on a lot of medications but pretty much frustrated about being hospitalized. They had stopped the heparin though, DUH!, because of the hemoptysis. I must of made arrangement for the girls or had Isabelle stay at the Hunt's because I did spend the night with him in the ICU. Mark's dad flew in from Michigan and came directly to the hospital. Mark's hemoptysis continued spaced by 12 - 18 hours of nothing. A broncoscopy was performed Thursday evening in the ICU but was really not useful since they could see nothing with the technology of the equipment. Friday morning he was moved to the West campus for a repeat broncoscopy with Dr. Michaud (and better equipment). Dr. Michaud notices that Mark has no compression boots on (to prevent blood clots when bedridden). They are put on. Broncoscopy performed and some cleaning up around the collapsed tumor was done. In the late afternoon we were visited by two sets of doctors. One wanted to perform some sort of cauterization of the tumor. The other radiation. We signed the consent forms for the cauterization procedure only to be told by the radiation doctor that we were doing radiation. I broke down at that point wondering at the lack of communication going on. Inevitably we were back in the ambulance headed for the East campus for radiation. He had his first of what what intended to be about 10 treatments.

By now they had discovered that Mark had developed blood clots in his legs. I suppose I wasn't surprised by this but frustrated that he hadn't had the "boots" sooner. The boot on the effected leg was removed. Mark's brother and mother returned from Michigan. Kent helped out staying alternating nights with the girls and with his mom. I rotated nights at the hospital with Mark with his dad and nights at home with the girls.

Due to the blood clots and the inability to administer heparin due to the hemoptyis an IVC filter was suggested. This is a filter that is inserted into the main vein in the leg and is supposed to catch blood clots and prevent them from travelling to other places in the body where they can do serious damage. Having no other option we agreed.

Saturday the girls had a brief visit in the ICU to see Mark. Sunday was Emma's birthday and she came in alone with Mark's mom and brother. We sang happy birthday and gave her a present.

After this procedure Mark's condition seemed to go downhill quite a bit. He lost blood through his urine now but had stopped coughing up blood. A low blood pressure meant he needed blood transfusions. He did loose his hair too. They did continue (changing the chemo drugs though) with his next chemo treatment on Tuesday. He did show some improvement then (less blood in urine) and was moved from the ICU to the chemotherapy floor. I guess this was good?!?!?!? But it was really touch and go.
On Thursday evening after his daily radiation treatment he developed severe irritation to his esophogus and could swallow no liquids or food. No more coughing up blood though (for quite a few days now).

Friday found him in intense pain from the radiation though none of the nurses/doctors seemed to attribute it to that. I asked them to contact the radiation doctor. But no. We saw a GI doctor but he recommended time. Somehow or other he ended up getting a barium scan which showed his esophogus was not blocked. A late visit by the radiation doctor (who had spoken to noone else) did clear things up. I described the situation and he recommended a solution for his throat. A day of pain and he could have had relief sooner. I refused to let him have another radiation treatment and the doctor reluctantly agreed to hold off until Monday.

Saturday the girls visited (after NEC) again along with my sister Robin. It was a lovely time to spend with him and he did appear improved. But after everyone had left I discovered Mark's legs to be completely swollen. The nurses hadn't noticed this. They continued with his blood transfusions and he continued to "blow up".


Daniel said...
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Kristin said...

(I purchased a beautiful ring bearer bowl from you a few months ago...the one with the three pretty ribbons)

I just want to send warm wishes and thoughts your way. I'm familiar with a lot of those complications that your husband has been experiencing, and I know how heartbreaking it is to see someone you love go through that...and the incompetence of the hospital certainly doesn't help put a person at ease. I wish you and your family all the best.

You have such an artistic gift, and I'm so amazed by the beautiful items that keep appearing in your etsy store.