Archive for April, 2015

days of pain don’t make for sunshine and clairity

April 28, 2015

since I last wrote, I was in the UCLA Santa Monica hospital for about a week from the April 5 to 10.  Cancer continues to progress with more ascites which I had drained at UCLA about 1.4 liters. Then, I went to Hoag Irvine to discover the continual vomiting was from a partial bowel obstruction which I had during the prior week at UCLA, so don’t get me started. Yes, UCLA was a big mess, but lucky my mom was there for the week. Unfortunately, my oncologist managed to break his mandible in 2 places he same night I was put in the hospital. Our intention was to get pain controlled and diarrhea at the time, but have treatment soon. This plan did not work and UCLA did not want to do the paperwork at the hospital, so they had me check out to get the chemo. Why didn’t they address he partial bowel issue. It just shows you if one piece is missing from your team, you suffer. Another doctor immediately covered for him, but I was added to her list of patients, I don’t know her 5 years, in fact I had never met her. Oh, yes we still have a slab leak which hasn’t been fixed, just stopped so we are without laundry machine, and one bathroom. It will be fixed eventually.

Last week, another mess on Tuesday with continual vomiting. I went to Hoag Irvine this time for what I thought was fluids.  I was told I had a bowel blockage was told to call my family so I did. It ended up to be partial and I was put on bowel rest, liquid IV food, to liquid diet. I cannot have surgery, but I did have Paracentesis and they drained 2.6 which was the most fluid I ever had taken. Every other day I need para. So then they took 2liters and 2 more liters and I’m scheduled today again. My sister, dad, and mom came on Thursday until Sunday. Much reality with the progression has happened. All I need to do is control the pain, control the fluid, and attempt to get liquid nutrition. All I want is less paras and more days.

Yesterday, I had chemo at UCLA. They added the drug to stop the fluid growth but the chemo is for the Cancer growth. I ran into a mutual Margie friend who I hadn’t seen since

December and when I saw her then, I thought it would be the last visit. She always said we are very similar never giving up hope. She is still here and living in an assisted living place, two weeks ago she was in the hospital at he same time I was. Calamity after calamity has happened with her except now her blood is broken which can happen, so she may not be able to get chemo. She still has attitude and made me smile and cry at the same time. Four months and she and the doctors haven’t given up.

Darkness continues…I lost my balance on Tuesday after the Paracentesis and hit my stoma in the wrong place. Off by ambulance to stop the bleeding to Hoag Irvine ER. Then the darkness continues, too much pain, bowel issues, I’m not present. I cannot even look at Jim or Alex because tears will just fall. With the help of palliative doc to the house, I avoid visit back to the hospital. No pain is the goal, being present is also a goal. Monday is chemo again.

I am now focused on the day, the minutes, the hours and cannot be in pain, must manage a lot like my bowel, my liquids, the swelling/need for paracentesis. I must stay present and not be a shell of a person to find my sunshine.

I got through the week with Jim’s care and palliative doc help. Avoided the hospital but in and out of pain. I have lost my voice. I have no strength to talk. Days went by and most were blurry and pain free. Focused on all what is to manage which is too much.

Back to ucla chemo and my doc is still out. A ride of pain in delirium. I started in the walker moved to the wheelchair. One appointment with radiologist was a blur. I could not communicate and all I did was cry and sob most of the day muttering incoherent words of sorrow. My nurses and staff came to hold my hand and whisper words of prayer and strength. I continued to cry and sob. Doc thought I need para yesterday. Big mess and without regular oncologist skill to manipulate the broken system I’m left with a visit to ER. This turned into a mess and ER refuses to do para, requests IR to do it but they won’t do it unless life crisis. Not sure how much more life crisis they needed. We spent 3 hours without seeing doc or nurse or anyone. Again without a doc who knows the system, I’m stuck. Control my pain and drive towards Hoag Irvine and home. I want to go home. Tomorrow or today is new and we can try para at Hoag Irvine.

This is a strange space by minute, by hour, by day. I’m not having a voice. I may glance at Facebook, your emails, your texts, but I have no strength to answer. Little by little there are good moments, but the moments come and go. I cannot dress myself or bathe with ease. In fact most things are.difficult. Hope you f I ND your sunshine and mine is a bit cloudy. I may have seconds which is ok. Please don’t sweat the small stuff. It isn’t worth it. I continue to appreciate your support for my family especially for my boys who have to see me like this while trying to find my smile which seems to be lost now.

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