The Beginning to the End

January 21, 2015

Midnight: Spent scrambling to gather vital road trip items, such as oxygen bottles, extra hoses, medication, food supplies, warm clothing and blankets, pillows, changes of clothes and general care items.

1 o’clock: Car is packed, wheelchair lined up and ready to transport Mom.

1:30 am: Dishes are done for the day, laundry is folded, counters are sanitized. I could sit for 5 minutes finally but I opt for a quick shower instead.

1:50 am: Pill count. Morphine tends to run out too fast, the last few days before we see the doctor again are a nervous stretch. I’m scared to leave Mom in pain, but more terrified I’ll give her too much or run us out of the medicine before we receive another prescription.

2 o’clock: Gently wake Mom enough to take her long acting morphine so she can sleep awhile longer before pain wakes her.

2:10 am: My turn to nap. I climb into my make shift bed on the living room floor shared with the family dogs.

5:45 am: My alarm burst out, “I See Fire,” By Ed Sheeran. It’s time to wake and rush to work getting Mom up and going. We have to be in Grants Pass and hour South by 8 am. I get her medication lined out and into a mini-shot glass sized red solo cup. Make some quick strawberries and cream oatmeal, a guaranteed eat for my Mom. She eats her oatmeal every morning without much fuss. Next comes changing and cleaning her up while I try to help her bend her stiffening and achy limbs into warm pajamas. The drive south will be warm in the car, but the biting 34 degrees outside will do her bones no good.

5:55 am: Gram arrives to help with the trip to see the oncologist.

6:10 am. She’s finally able to sit up, though horribly tired, shaky and very dizzy.

6:20 am: We get her moved from the bed onto a sit and walk walker my dad now has to use. The wheelchair will not fit through the door jams in our old house. Improvisation. Key to anything challenging when shit hits the fan.

6:33 am: Gram and I manage to get Mom into the car without much incident. Though she can’t stand anymore, she is finally and unfortunately light enough I can move her with ease.

7:34 am: We arrive outside the Oncology Infusion Center in Grants Pass. It shares a parking lot with the hospital my mother spent 6 days in this past November.

7:50am: We unload the wheelchair and I lift Mom out of the car and into it as Gram bundles her carefully with blankets.

8:05 am: We check in and wait for the port draw. A port is a device inserted into a patients chest. It has a tube that runs from a half-dollar sized machine that connects directly into main arteries in the neck. This is used to administer the caustic chemicals and concoctions that are chemotherapy. It is also used to draw blood for lab work and administer medications and other drugs so as to preserve the integrity of other smaller veins.

8:11 am: We go see George. He’ll be doing our port draw today. We chit-chat as he works, I reassure Mom as it does hurt a little and it’s over fast. The port uses a connector that looks a lot like a phone jack to connect to the port. From this “jack” a lead is inserted and can tap into a patients vein. Quite invasive, but also very useful for long-term treatment.

8:20 am: We return to the waiting room and sit until our appointment with our doctor. I check Moms oxygen level and see it is running down. I run down to the car to retrieve a fresh bottle.

8:25 am: I switch the oxygen tap over to the new bottle in time to see the doctor. We would normally go to a side area first and Mom would be weighed. She is not strong enough to stand on the scale, so we have to skip the procedure.

8:37 am: Dr. Taylor comes into see us after a nurse aide takes Mom’s temperature and double checks her medications. Dr. Taylor appears quite concerned. She has not seen Mom in 5 weeks, her colleague saw Mom on our last visit as it was New Years Eve. Mom has clearly slid downhill since our last visit. The last time Dr. Taylor saw Mom she was walking, talking and laughing at stupid things. Now she can barely sit upright and has trouble even lifting her head to look up.

8:45am: Dr. Taylor compassionately tells us it’s time to give up the fight. There is no more that medicine can do, other than try to take away the pain. I sit in silence as the words echo around my head. I knew it was coming. I knew she could not fight forever. Her body is tired and broken. My heart aches for my grandmother who sits beside me trying her best not to give into emotion, to be strong for her daughter. I can feel every moment of the last 5 months come crashing down around me. I worry for my three sisters and I fear for my father. I know I’ll have to pass on the information soon. Messages will begin popping up in our private Facebook page.

8:50am: We begin looking at options. Denied multiple times in the past few months, hospice is finally granted and arrangements begin to be made for help in the home. I have mixed feeling about this. The home health nurse that had finally come by to check on Dad after his operation, a week later than requested, was not particularly helpful, but rather was either in my way of taking care of my mother or sitting on her butt watching TV. I suppose we will see how things go next week. Treatment is not possible as far as chemotherapy goes today. Her body is too weak to sustain the caustic infusion of a drug known as Taxal and not only the 7 hour infusion but the impact it will take on her already debilitated body would be detrimental. Accepting that it will do more harm than good, we decide to readjust at home pain medications and opt for an IV drip filled with saline, steroids, anti-nausea medication and morphine to make her more comfortable for the long ride home.

9:07 am: We go back to the infusion room to see George again. He and Tammi, his cohort for the day, get us set up with the IV after orders from Dr. Taylor are processed and we get Mom moved from the wheelchair to the recliner. The IV drip will take about an hour and forty-five minutes. In which time I spend updating family on social media with my phone and trying not to cry. Gram is particularly quiet and opts to watch our things off to the side, absently staring at a magazine I couldn’t imagine ever interesting her. Mom quickly drops into a fitful sleep moments after the IV begins. An extra shot of morphine makes her look the tiniest bit more comfortable.

11:42am: Mom’s IV is finished, we get her out of the recliner and back into the wheelchair. Bundled back up and ready to check out of the facility. It’s likely the last time we will be seen by the oncologist we chose out of the many we reviewed and the several we met with just months ago.

11:55am: We get her back into the car and strapped in. Gram, Mom and I opt to grab a quick burger at Burger King before hitting the road home. Mom is feeling pretty decent after the IV drip and ate some fries and the majority of frozen coke—the most she has eaten aside from pudding, jello and oatmeal in weeks.

12:15 pm: We hit I-5 North for the 40 mile trip home. It’s a beautiful sunny day and a nice drive back. Completely opposite from the last trip to Medford for chemotherapy which was a nightmare of ice, to say the least.

12:50pm: We roll into Canyonville to drop off the pile of prescriptions needing filled at the local pharmacy. It will take a while so I drive Mom and Gram back home. We get mom in the house and back into bed. It’s chaos of dogs running around and barking, things falling over and oxygen tubes getting tangled but we manage.

1:00pm: Dad shows me the mail and a new problem arises. We have been waiting several days for Ostemy supplies for my father to arrive from the VA. Instead what we get is a bag of every prescription my dad has ever been issued from the VA and a bill for $240 for things like aspirin at $24 a bottle. Needless to say I immediately tried to call the VA pharmacy. I then sat on hold for 20 minutes to talk to a pharmacist that had no idea what I was talking about and opted to try connecting my call to billing…where it disconnected almost immediately. I then called back, sat on hold for another 20 minutes to talk to the same person that then gave me the number for billing so I could call and tried connecting me to an advocate instead. I received a voice mailbox and left a message. We’ll see if they call back or if I sit on the phone for another stretch tomorrow.

2:14pm: I hop back in my car and head to town to get the prescriptions Mom needs after the visit today and the revisions we made.With Alice Cooper music blaring in my head I finally fall apart. I can’t seem to drive and not cry anymore. My car is my sanctuary when I am alone. I packed up all 3 dogs before leaving so they are chasing cars from the backseat and having a good old-time, normally this would make me smile, today I can’t seem to manage. 

2:25pm: I stop in at a local grocery store for a couple of items. Ran into an old friend and the former Chef I worked under years ago. Had a nice catch up chat in the milk aisle before racing through the store and picking up the prescriptions. All I can think about is when will this end and what am I going to do when it does?

2:50pm: I return home, let the dogs loose into the yard and head into the house to straighten up, change Mom, get Dad set with a snack and start looking at what needs to be accomplished by bedtime. Luckily bedtime is hours away. The house is a complete mess. It seems like I clean all the time, but much like having small children, between my Dad, 3 dogs and visitors the house is always a disaster in one way or another.

3 o’clock: I get mom settled and start in on a lotion massage to get her legs to relax enough to be comfortable after sitting up for so many hours. The phone rings about every 10 minutes and its difficult to actually get anything done.

3:20pm.: Hospice calls to set up an appointment. I still have mixed feelings about this but invite them over next Monday.

3:32pm.: The phone rings again, this time is a recording from the Douglas Country Sheriff office about an amber alert. I don’t know the boy in question but start down a whole other dark and dreary brain path revolving around childhood friend Stephanie Condon who was kidnapped in October 1998 and later found to be murdered.

4:08pm. More phone calls; some from family and a new sheriff’s office call with a recording saying the boy was found, amber alert over. I’m briefly thankful he was found and then dump it from my mind. I’m slowly making progress trying to clean up the house but it seems to just move from pile to pile more than anything. I finally give up and turn on my laptop.

5:11pm: I check my usual haunt of sites and have over 80 messages. Part of the reason I started blogging about my day. I can never seem to keep up with inquiries about my family. I write a letter to my Gram and get it emailed off and then start to tackle some of the others.

5:50 pm: I temped Mom with a doughnut for dinner and we all end up grabbing a raspberry filled powder doughnut for dinner. We eat our dessert first around here.

610pm: I get the dogs settled down with their plates of homemade chicken dog food. Spoiled beasts that they are I, bake-off chicken for them every few days. No puppy chow around here.

6:18 pm: Here I sit. Barely holding it together, tears running down my face trying to reason out my day. I hate that I seem to remember every little detail about every day. It has turned into a form of OCD. Apparently somewhere in the deep recesses of my brain, I have come to think if I forget any little detail then everything will being to slip away faster. Like the pull string on a bag of grain, the seeds of life will spill through my fingers with no way for me to catch them.

7:08 pm: I’m not editing this. I find I don’t care if there are typos. I’m not perfect and can’t expect myself to be. Tonight…is the beginning of the end. The end of months of torment, months of fighting, time to try to let go even though I know it will be one of the hardest things I ever face.