A Journey of the Heart

This week has been a whirlwind of moments and emotions.  On Monday my Dad had bladder surgery to remove what they felt was a low grade, late stage set of tumors.  I picked him up at 5:00 a.m. and I could sense his nervousness from his stiff walk to the way he continually rubbed his hands together. As an 84 year old man this was the absolute last thing he wanted to be doing this early on a Monday. I tried the best I could to calm his nerves while trying to keep mine in check, I straightened his hair after it got mussed up while changing into his hospital gown and I looked into those big blue eyes and said "We can do this Dad, I love you and I will be right here waiting for you". He smiled back as I told him to behave himself. I tried to engrave that smile in my mind, never wanting to forget how his lips gently curved, how his eyes locked on mine and how my heart yearned to make both the bladder and lung cancer just disappear.

As I sat in the waiting room I texted family, thought a lot about my Mom and hoped, prayed and even visualized her sitting right there next to me.  I could see her beautiful white hair, how she would be twisting and playing with her wedding ring, how she would watch the door the doctor was bound to come through with news on how the surgery went. I just so needed her to be there with me.

Although the surgery was only 45 minutes...time seemed to be in slow motion.  So many thoughts running through my mind, the what if's were only surpassed by the prayers of strength, guidance, and compassion that was going to be needed to get through his recovery process. When the doctor emerged he ushered me into a conference room and explained that Dad did really well and was in recovery.  He explained that the tumors were large but he felt they were superficial and had not gone into the deeper layers of the bladder. He explained the catheter procedure and assured me they would provide training on the care and removal. As I listened to him explain the chemo they had directly injected into Dad's bladder my thoughts seem to drift to "yeah it all sounds good...but he's still fighting stage 4 lung cancer"  the elephant that is always in the room when they give me their prognosis.  I reel my attention back in to the doctor as he explains that he would like to keep Dad overnight because of his age and to monitor his vitals and the function of the catheter better. I agree with his plan and begin to breath again.  He's out, he's stable and his bladder cancer has been removed. As I head back to the waiting room, the stress and anxiety take a back seat to the tiredness I feel from not sleeping well and getting up early. I drift to sleep until I am awakened by the receptionist who let's me know what room my Dad has been moved into.

He is still groggy and on oxygen as I enter his room.  I sit next to him and watch the machines that monitor his vitals desperately trying to keep them at good levels with just my will power. He continues to rub his hands and I am mesmerized by the motion.  Those now heavily veined, wrinkled hands that once lifted me up as a child now reach for me again this time to hold on to and gather strength and reassurance that everything was alright.  Life has a way of flipping the roles. I explain to him what the doctor said and I reassure him that he is doing well.  As he comes to he begins to browse the room service menu and I am encouraged he is hungry.  The nurses get him up and walking and he is looking good.  Everyone comes to visit and he is talking and laughing, I leave the hospital reassured that he is in good hands.

I make dinner for the family, make lunches and then jump into bed early.  I find it hard to sleep wondering how he is doing but manage to drift off until I am awakened at 4:30 a.m. when my cell phone rings.  It is my Dad and I begin to worry as he sounds confused and disoriented. He is not sure where he is or what happened and how we got seperated.  I ask him to ring for the nurse but he doesn't seem to understand.  He asks me if he should remove all this stuff and I begin to panic.  I let him know I am on my way. I quickly call the nurses station and they inform me that since he has taken the Vicodin he seems confused and disoriented.  Well, sleep is no longer an option so I rush over to the hospital.  Dad is sitting in a chair playing his Nintendo DS.  He still appears somewhat confused and I notice they have alarmed his chair so that if he tries to stand the alarm sounds. The nurse and I chat and then I sit with Dad and try to see if the Vicodin is wearing off.  He attempts to get out of the chair a few times, completely forgetting that he has an IV and catheter and the nurse and I get him seated and re-situated.  To see my Dad in this state of confusion scares me. The nurses reassure me that Vicodin sometimes causes this type of reaction in older people. I wonder if this it what if feels like when your parent suffers from dementia...it's a terribly helpless feeling and all you want is for their personality and orientation to return to normal.  The nurse came in to let me know the doctor would be releasing him and my nervousness was a little elevated.  At this point I'm praying that the confusion I am seeing is just as they say, a reaction to Vicadin.

We are finally released at about 11:30 after a review of medications and a brief training on catheter care, bag changes and the problem signs to watch for.  Our return appointment is set for Thursday at 1:00 p.m.  I'm encouraged as we come through town that Dad says he is hungry and we pick up a snack pack for him from Culvers.  I am so happy to see his appetite return after the radiation last week took it away.  He is feeling good enough to want to stop and pick up new domes for his hearing aids...I was not so sure we needed to make a side trip and just really wanted to get him home but I agreed.  I'm nervously cautious of his walking, he still seems a little unsteady and when we have to wait I worry about him standing too long or how much fluid is collecting in the bag strapped to his leg but I am also encouraged to see him this strong, this quickly after surgery.

When I get him home he makes me more than a little nervous by walking around the house unassisted and teetering both when he sits and stands.  I had to catch him on more than one occasion.  He goes into the bedroom to look for a sympathy card for a friend and I nervously wait for him to return. I don't want to follow him like a stalker but I also want to keep him safe. Suddenly I hear a big boom and run down the hall to have him smile at me and say "I'm fine".  I give him the look and let him know he almost gave me a heart attack, he laughs and says "it was just the drawer, it was stuck...what did you think I fell over?"  Ummm....yeh!!!

I find myself watching him, checking his color, listening to his breathing and monitoring his ability to move independently.  As I sit in my Mom and Dad's house the memories make me both smile and choke back my tears. The hardest moments come when I hear my Dad talking to my Mom, what he says both touches and tears at my heart.  The love and emotion in his voice is so hard to hear and yet just touches on the love they both shared. I look around my childhood bedroom and I smile and cry remembering so many things and wondering how we will ever be able to let go of this house that holds so many wonderful memories and my entire childhood.

I was so worried that Dad would get up in the middle of the night like he always did and not realize he had a catheter that I barricaded the side of his bed with a chair. He laughed at me but agreed it may be needed.  Thankfully he slept well on Tuesday night, completely exhausted from his 2 nights of very little sleep. I wish I could say the same but I found myself listening for his movement, his snoring, his breathing and getting up a few times to check to make sure his catheter was draining properly.

The next morning he looked more rested than I did.  He was doing so well that I decided to head to the grocery store and possibly have the family over for dinner.  Plans changed quickly when I got back and he told me something was wrong, his catheter was leaking and he was uncomfortable.  I called the doctor and spoke to his nurse. She asked me a lot of questions and then explained that this is common and it is very important that we get his bowels to start working.  Anytime a system fails to work it sends the rest of the body into distress. He became shakier, having more difficulty standing and sitting, his bladder was spasming so much that it caused his back to spasm which cause his legs to give out. We were quickly headed downhill.  The nurse asked me to test the catheter by closely monitoring intake compared to output.  It quickly became evident that his output was not equivalent to his intake. I took him to Good Hope clinic to have his catheter flushed and as it turned out they needed to change it out.  But again Dad had to lay on a hard table and his back was much worse than when we came in.  By the time we got home his attitude began to follow the decline of his body and I began to pray.  It is so hard to watch a loved one suffer as you stand by and feel helpless.  I tried to remain positive and hopeful but he just kept saying "is all this worth it". I had him drink prune juice, he took milk of magnesia but he was quickly declining.  His doctor called and suggested a suppository. I ran to the drugstore and together we kept trying to get his systems working.  He became so weak I had to have Ben bring one of Sam's wheelchairs so I could get him back and forth to the bathroom.  Finally his bowels began to function, slowly at first and then rapidly. As weak as he was we both could still manage to laugh and smile again. I truely hoped we had turned the corner but his catheter continued to leak and he was simply exhausted. I watched him through the night and he slept fairly good. The next morning I removed the catheter as instructed and prayed this would calm the bladder spasms.

He was able to shave but when he completed his shower you could see how much that activity had fatigued him.  We went to his doctor appointment at 1:00 and found out that the doctor was wrong and the pathology showed a higher grade cancer that had gone into the second layer of the bladder but did not appear to be in the muscle around the bladder.  He said he would normally suggest more chemo but considering my Dad's other condition the lung would probably progress much faster than the bladder.  Again Dad had to lay back and his back was hurting again. We picked up a walker from his other doctor and returned home.

Today I have tried some topical pain killers to help relieve the back pain and just put pain patches on his back to help him sleep better. He seemed a little stronger today, a little more mobile and he ate okay. This weekend my siblings will take over to give me a break and allow me to get caught up at home. We are a close family and each are doing what ever they can.  Dave brought books and dinner.  Steve and Martha have checked in and will come down this weekend. Wendy has been cooking and cleaning.  I am hoping that he will be strong enough by next week to require less care but only time will tell. Right now I am enjoying our conversations, feeling humbled to step in for my Mom and feeling blessed to have this precious time to take care of him.

This journey is both hard and affirming for my heart and mind. I continue to trust in the Lord and just carry on. Loved sharing Sam's 13th birthday with Dad and watching both of their faces light up. Exhausted and feeling the need to get some good sleep.  Good night everyone and Happy Birthday Sam, my little warrior...I love you more than you will ever know or realize.