Monday, November 2, 2009
... hitting the wall
..... wether it is the abrupt change in direction for the hormones or the excruciating sinus headache that kept me awake all Friday night with no relief....
I kept checking my temperature throughout the night on Friday checking to see if I was running a high enough one to warrant a trip to the hospital. We called the on-call Oncologist on Saturday morning but my temperature was .5 of a Celsius degree off which meant it was not a Febrile Neutropenia (FN) which occurs with temps over 38 degrees C. Max had purchased an easy to use and quick Vics oral thermometer which shows in color where your temp is making it easy to read in the middle of the night. A temperature that exceeds 38 degrees when a person is in Chemo treatment can easily lead to morbidity or mortality. The cancer unit here in London will immediately admit and administer antibiotics once they determine the type of infection that is causing the sudden decrease in an already compromised immune system.... FN is a direct result of a white cell count that is dangerously low. That would explain the Neulasta shot after 24 hours when the chemicals have washed through the system, it speeds and assists the production of white cells to avoid FN from occurring in the first place. It is never recommended to take fever medication while in Chemo which explains why I put up with the pain which started late Thursday night and progressed into Saturday morning. When I could ascertain that it was not FN then I took a cold and sinus pill and emailed my doctor who promptly returned an email with confirmation of a prescription antibiotic that she called in. It is dangerous for me to go to an ER or a clinic - even though I would be put at the front of the line - I would still be in a waiting room with flu and cold patients.
I was lucky enough to go out with Susan H on Friday morning for a quick jaunt for coffee, library books and enough supplies to make the job chart for the pantry door. She carefully wiped things down like tables and shopping cart handles so that I could feel safe that I wasn't going to pick up any germs. I am not paranoid but now deeply aware of my predicament through the flu season. We went at a time where very few people would be in the places we needed to go. There was one person that unsettled Susan though.... we were in the Library with possibly ten people sitting in various areas at the tables provided for studying. We rounded the end of one aisle only to been stared down at by an older man sitting at one of these tables. I bid him good morning as we passed and he grumped something which I couldn't make out so I turned to face him and said 'pardon me' at which point he grumbled something and glared at me and I again indicated that I had not heard him. His response was short and nasty.... this is a Library blah blah blah..... I bid him a good day and turned to look at a very shocked Susan. His nastiness had unsettled her and she mentioned that perhaps that was why he was sitting alone. Never know where someone is in their life's journey... It's not personal just a snapshot in someone's day. Thank you Susan for taking time out of your day to spend it with me and for looking out for me. xo
Saturday was spent in bed trying to recuperate and I really wanted to partake in Halloween which is one of my favorite yearly events - it really should be a national holiday.... ahhhh the token of the mid-fall season that ushers in shorter hours of daylight. I remember the excitement of my youth..... my parents emigrated from Germany in August of 1965 and were quite perplexed when decorations, costumes and candy boxes started showing up in the local grocers..... my parents spent a few nights making our very first costumes - my mom was pregnant with number 4 and I was too little to go but my older brother and sister went out. The first one I remember, my parents made witches costumes complete with authentic looking cardboard cones with wide brims and sporting a bunch of stars....it was 1969 and we lived on the outskirts of Old South. I waited anxiously at the window where my mother had lit a candle in the jack-o-lantern. for my father to come home and for night to fall before we could go out and it was magic!! They used to sort out our candy and put them in tins to be dispersed over a period of time and in a fair manner.... that only lasted until I was about 7 and then it was a swap meet of who would get traded the historically crappy molasses chews which were wrapped in orange sporting cats and jack-o-lanterns. I have not seen them in about 5 years now and I miss them in a really nostalgic way.... I actually acquired a taste for them and minded less and less when my brother would swap for the good stuff. Now it is my children's turn and I am so proud of Mitchel who really wants to take Lydia trick-or-treating by himself.... it seemed like yesterday when I was pulling him around in the wagon jammed in a costume and fussing every time we stopped and William running pell mell down the street - a three year old who clearly understood what to do!! Every year I would stand farther back from the front doors while they ventured forth in their own independence and gently reminded them to say please and thank you. I take the traditional pics and Lydia hams it up for the camera. I smile and kiss her as she spots the first children coming up the road and she tears off waving bye Mom!!! Mitchel is right behind her and Will heads out in the opposite direction - he is dressed up but will not be knocking on doors this year..... he is too old now :(. Tucked away in the dress up trunk are 12 years worth of costumes.... this will be my first time in 13 years that I will not be accompanying my children because I am too sick today. It is a Saturday night... full moon, spooky trees which earlier in the day bore leaves until the relentless wind and rain ripped them away. It is crisp but dry and you can see the dark wisps of clouds skirt across the moon.... pure MAGIC!!! Lynn T. has brought over a pot roast in the afternoon and it hit the spot after a long afternoon nap. Thank you so much!!!
Sunday I am still sick but managing the sinuses. I find myself out of habit now early Sunday morning before anyone is up to go online with facebook. Rebecca IM's me to see how I am. Over a few minutes time, we make plans for breakfast and she hits up the grocery store and Tim's on the way over. After cooking a huge breakfast she gathers her things and heads to the door. She is the boys paternal aunt and has 'adopted' Lydia as her own and with lots of hugs later she is off to church. Thank you so much Beck for your company and the great breakfast choices!! Love you!! I am tired but feeling better and I don't want to spend another day in the house. A quick call from Mandi and we have made plans to visit her in the afternoon. Paul M catches me on my way out the door to Mandi's... climbs down the ladder he is using to do his bi-annual eaves cleaning and hands me the still warm dish of Shepherds Pie. Thank you so much for the dinners you have provided us with and the home baked chocolate cake that Shelly's friend has given to us. We are off for the first drive I have done since before chemo and I feel liberated and excited to be out!!!! Lydia is excited to have a playmate and spends the afternoon playing dress up and stuffies. She is inspired to making her own house with homemade crafts for her stuffies. It is my third outing since my chemo 10 days ago and I cozy into the couch with a tea and great conversation. I am eternally grateful for our friendship. We get home and Lydia ropes Max and I into drawing and coloring pictures that will adorn the walls of her stuffie house. Thanks Ava for inspiring us, you are so much like your Mom!!
Monday... I am doing phone calls trying to get signed up for a program sponsored by Pharmaceutical Amgen Oncology called the Victory Program. They can assist with prescriptions related to oncology medicines. My benefits will change in January and as far as my insurance company is aware of - I am currently covered for 100%.... Victory Program will offset the costs that the insurance will not cover in the new year. What a relief... it's the time at which my pay will drop fairly significantly as I move into the long-term disability portion of my journey. I have a file number which the pharmacist will use when my script is filled and will pay for it using the Visa card that the Victory Program supplies them with. They can cover emergency cases when insurance is delayed for any reason and will cover up to 100% for those that cannot afford these life saving medications.... without the Neulasta.... the sinus infection would have been significant. Lydia has returned from her dental appointment and she is woozy from the gravol and is uncomfortably numb. It turns into a day of arts and crafts and we spend some cuddle time... I am happy for these moments that come more and more. She tells me how much she loves me and how wonderful her day is. Montea comes with tonight's supper- a wonderful legume chili which we pour over the meatloaf that Kelli M dropped off on Saturday afternoon. Thank you for your visit Min and to our friends at Bob who have kindly offered to put money towards the groceries used to make future dinners. I am truly a very very lucky woman to have such incredible friends who just amaze me. I will see you soon Min!!
I would like to add a special note to Ann from Bob FM and her daughter Mariah (love that name!!) who put together an amazing lasagna for us this week and for the little card that we found!! xoxoxo
The calls over the week end from family and friends who are thinking of me are so wonderful. I may not have been able to fully enjoy Halloween this year but have made a vow to pull together a party for all our friends next year complete with decorations, scary treats, bobbing apples and I will see if I can find the nostalgic candy of years gone by. I hope you all had a wonderful time and rediscovered the magic for yourself..... to Celine and Melissa who are expecting your first.... may your next Halloween bring back your best memories when you dress them up!! Sending out love and laughter to everyone. xoxo