‘The practice of stringing together words that have no apparent connection to one another–an extreme form of incomprehensible speech.’ (about.com)
Alice (Dr. Shaw) called me at 4:15 yesterday after consulting the urine culture from Sunday’s visit to urgent care; the only antibiotics to which the infection was not resistant were ones to which I had an allergy. With no other option aside from IV antibiotics, we decided that I would try a cephlasporin. The last time I took an antibiotic in that class was over twenty years ago and my cheeks had immediately taken on the appearance of having been slapped; I have avoided cephlasporins since. As this had been a relatively minor reaction, we decided they were now my best option. The pharmacy is a twenty minute drive from our home and snow and sleet had been forecast. Having been awake for almost 60 hours now, I was eager to get this errand out of the way.
I got to the pharmacy shortly before 5 pm. They had not received my prescription yet; I called and left a message for Alice. After 25 minutes the fax with the scrip came in, but they didn’t have any of that particular drug in stock. If I didn’t want to wait until tomorrow afternoon (not an option) they could see if it was in stock at their other pharmacies. After placing a handful of calls, they found a pharmacy in Manchester that had 10 out of the 14 pills I would need.
I have a GPS system but it wasn’t in the car. The liquid crystal screen is sensitive to freezing temperatures, and I had brought it inside several days earlier. I set off with some handwritten directions, but I quickly realized I didn’t actually know how to get to the starting point, 93 north. Having pulled onto highway 293, I pulled off at a familiar exit and stopped at an urgent care facility for directions to Elliot hospital, which was adjacent to the pharmacy. And then I stopped at Elliot hospital and asked the receptionist how to get to the pharmacy (connect the dots…). I got to the pharmacy by 6:30, but even with my additional stops I was somehow faster than the fax machine, so I called Peter and told him he would need to make his own dinner. A little before seven, drug in hand, I was on the road home.
Or so I thought. Nothing looked familiar, and with a sinking feeling, I realized I had no idea where the hell I was. Taking an exit off the highway, I pulled into the parking lot of a grocery store and sat there and cried. Not knowing what else to do, I approached the customer service window, bawling like a little kid. I explained that I hadn’t slept in days, and that I was lost. I just wanted to go home. The very compassionate young woman took a lot of time to write out directions for me. No street names, just things like ‘and then you turn left at the green sign and go to the toll road.’ What toll road, I asked? The toll road. It was like an incomprehensible story problem and I simply wasn’t up to the task of deciphering it.
After asking her if I was in fact north of where I wanted to be, I thanked her for her trouble and did the only thing that made sense to my increasingly panicked and addled mind. I took 93 south. By the time I recognized where I was, I had a choice of heading south to Boston or east to Portsmouth. Having once again overshot my destination, I was far from home. Now crying with abandon and frankly scared out of my wits, I drove east, took the first exit, and turned around again.
I eventually found the exit I needed. As I drove the last twenty minutes down what should have been a familiar road, I struggled to recognize my surroundings. I also began to wonder if this was real or if in fact it was a nightmare. I had been gone for over three hours when at last I pulled into our driveway. Peter greeted me at the door, wondering if I was okay. I hugged him to me and told him that I was having a hard time putting my thoughts together. And that if I became more confused or unresponsive, he would need to call 911.
Obviously, I had no business driving, and we need to get a plan B in place pronto. What that means, I’m not yet certain, but I am fast approaching a place where managing on my own is sometimes not only impractical, it’s impossible.
Alice called to check on me at 9 pm. I had taken the antibiotic without incident and by 10 pm, something wonderful happened. I fell asleep.
I am, again, so very sorry you had to go through this mom. Reading about it breaks my heart. I love you so much
I love you too sweet pea, and your repeated phone calls to check up on me were a godsend.
Oh my goodness. I’m sorry that sounds very traumatic. Hope you had a deep, lengthy sleep last night and the same again tonight.
I’m getting there Sally. Sleep lost is sometimes hard to find again, but I am working on paying that sleep debt down.
Driving around lost in the night in the snow–while sick–this qualifies as a genuine nightmare. You know all those good friends who tell you to call if there’s anything they can do? Most really mean it . At least, sounds like it’s time to find out.
Hope the week gets easier and that the pills do the trick.
Ellen, fortunately the weather moved in later than predicted. Had I also been in a little blizzard, I’m not sure I could have gotten through this–so I am grateful for that (and a full gas tank–had I been running low, the little red light might also have fallen under my radar).
crying. I hate this disease. I am so sorry you have to deal with this. I am so grateful that you keep writing about what is going on in your life, sharing things both good and bad, as well as the very real intensity of it all. love you dear friend, Lorraine
Lorraine, I have been a poster child for what is possible in lung cancer for sometime now, and that tale was more fun to relate. I am coming to a hard place, and I have mixed feelings about sharing this part of the journey too. However, it is what it is, and as you know, there is no glossing over the difficulties. Love you, and thanks for the email–if I can’t come to Keene, I would be great to have you visit (we are about an hour away).
Thank goodness for sleep. It can make many things feel better.
Craig–sleep is amazing. I’d put it right up there next to breathing as an essential (but thank goodness we can do without it longer than we can air!)
Linnea, that is not allowed. Get Pete a driver’s license pronto! There is such a thing–at least in TX, where a 15 year old can get a “hardship” (actually I don’t know what it’s called) license, but it would allow him to drive you!
Check into it now—–please.
Caroyln, Peter can get his learner’s permit now. The limitation is primarily time–they no longer teach driver’s ed in school, so we would have to make those arrangements. And likely that would just mean more on my plate.
Sleep is amazing. Plus, after I entered this cancer zone, I became more compassionate – prior to this, I couldn’t understand how something that normally seems simple can be so overwhelming. Now I know. My heart goes out to you; you are not alone. Take good care and I hope that today is a better one.
Thank you Marie. Under any other circumstance, being lost would not have turned me into an utter wreck. Sleep deprivation was of course the biggest problem, but on that day, it did feel as if my problems were many. Overwhelmed is an excellent description, and (hopefully without sounding patronizing) I am glad you have learned compassion. I think as human beings we first have to be in need ourselves before we can truly understand that concept. It is no coincidence that many of the most compassionate have been through great difficulties. Thank you for sharing that.
Do they have Lotsa Helping Hands by you? It is a community organization where people in your town sign up to help someone who needs assistance with anything. Sleep deprivation is just horrible! I’ve had it a couple times in my life, and I think it’s one of the worst things there is – it is really painful. (sleep deprivation on top of a UTI would be the absolute worst!!!) Now that you have slept, things will look a lot better to you! Please please please ask for help if anything like this happens again – I’m not all that far away and I could come help you. Not sure this will make you feel better, but once when I was really really tired, I got lost at Mass General when I came out of the gift shop in a different door. No kidding.
Sharon, I have bookmarked the site and we will look into it. Sounds as if it might be good tool for my husband to use, as he is the caretaker. I can imagine how you could get lost at MGH, the place is a city. And thanks for your own offer of help–you are amazing.
Linnea, Catch up with your sleep, and then contact Lotsa Helping Hands; this organization is a godsend. One of my neighbors initiated the service when I became a 24/7 caregiver. All of my friends and neighbors were tremendous when we needed them most; they in turn felt relieved that they could actually do something for us. Your confusion was no doubt due to sleep deprivation and infection, but I agree it is time to reach out. Feel better very soon!!!!
Joan, thank you too for this advice. Fortunately my confusion was temporary and definitely due to sleep deprivation. I did a little research yesterday, and the cognitive deficits from extended lack of sleep are very real, with a level of impairment comparable to someone who has been drinking. There is, however, one important difference. I was aware that I was impaired, and so very conscientious and able to over-compensate. However, I don’t want to ever be in that position again–it was frightening. So yes, I will show the link to Lotsa Helping Hands to David.
P.S. — I’d be lost without my GPS. If I forget to bring one into the car with me there’s another one in my iPhone. The older and more sleep-deprived I get, the more forgetful and disoriented I get sometimes, so rest assured it’s not just you.
Thanks Craig, they are wonderful tools, aren’t they? It has made my life so much easier, as I can get turned around and lost with ease under any circumstances. I don’t have an iPhone but have asked for one for my birthday. I think this incident underscores it’s usefulness…
Pleasant dreams…..and lots of them for many, many hours, Linnea! I will never complain again about my own insomnia. Do you have a good neighbor there that you could call for help? Hope so. Take care; you are of course always in our thoughts.
Pat, you can still complain. 🙂
The neighbor thing is an issue. I love where we live, but it is no Blueberry Hill, and it has been difficult to get to know people. I have so many dear friends, but they are scattered across the globe; the closest at least an hour away. This incident has motivated me to reach out to some very nice people I know more casually, and I’ve now got a few names on my list. And some friendships to explore further as well!
Aww, Linnea. I was feeling your confusion and overwhelmness (if there is such a word) right along with you on that drive. I give you so much credit for the strength you have shown and the inspiration that you are. I take Temazepram with my Xakori for a restful night. Wishing you many sleep-filled nights with pleasant dreams
. Take care.
Roni, if overwhelmness is not a word, it should be 🙂 Thanks for the words of compassion–I felt this was one not very well edited blog but the same can she said of that night…lots of passages I would have liked to have deleted.
Bless your heart. Ask those casual friends for help, please, no one minds giving a hand, I’m sure. And if they do, shame on them. Such a scary adventure. Hoping sleep is coming easier. Hedy
Hedy, I’m going to have to be more proactive in this sense, that’s for certain. Thank you…
OM – Linnea. If it’s any consolation, I’ve had a couple of those horrid evenings in my life as well. You, so certainly, don’t deserve anything like that. I would have bawled like you, but I would have been a bigger baby and called 9-1-1. … and asked them to rescue me. You were so brave.
May you have a comforting weekend. On the heels of a journey like that — even average shitty days are welcome! 🙂 . xoxo! You are in my thoughts… all good !
Dana, it crossed my mind (911) but I was so afraid they wouldn’t let me drive and I’d be up the creek the following morning when it was time to get Peter off to school. What I really wanted at that point was someone to just lead me home…and I have heard from a few others who have been through those sleepless nights in a row as well. General consensus is that it really sucks. Thanks for the empathy!
Linnea I have read several articles recently about the often debilitating effects sleep deprivation has on people. I have to share – Bill Clinton was quoted in one as saying all the bad decisions he has made were because of lack of sleep. I guess Hillary believed him.
Hope you are feeling better and the snow has melted.
Beryl, I read a few articles myself in the past two days, and it’s not a good thing (sleep deprivation). I have to laugh at your last comment though; I might not have been so understanding as Hilary was 🙂
You’re right. I forgot about that, and in general… even though I said I’ve had something similar, only meant in the way of being truly lost for an entire night in a couple of compromised situations. That in and of itself is a true nightmare, really…so I have wanted to apologize ever since I entered that last night. I hope you’re feeling better.
Dana, no apology is necessary! I really did consider the 911 angle and under the circumstances, it might have been the best call. However, I knew I was ‘it’ at home for Peter and certainly not up to making phone calls trying to get someone there for him, so I toughed it out. Depending on who responded, I might have ended up in an emergency room or some such thing, and what I needed was to be safe at home with Peter and in my own bed. Fortunately, I got there!
what a nightmare, will your husband be home soon? I never liked freeway driving when I was well, won’t even attempt it since I got sick. You are one tough cookie, that is certain. Prayers continue for you every day.
Thanks Melanie. David got home Friday night but leaves again the day after tomorrow. This is an ongoing challenge that hopefully we will come up with some solutions for soon.
I am in awe of all you are doing to get through a day, for yourself and for your family. If you feel there is ever anything I could help you with, I would be honored for you to ask. Please keep that in mind. Take care and hope you are sleeping soundly.
Thank you–with your permission I shall add you to my list of contacts. I am very grateful…
It would be a sincere honor to do whatever I can. So glad I’m now on the list! (I’m in southern New Hampshire, can’t remember if I’ve shared that.)
It doesn’t matter the time or the distance – if the need is there, call me – please
Amy, you’re going on the list too 🙂
top of the list I hope!
Hi, new reader here. My 57 year old (non-smoker) dad was just diagnosed with stage iv lung cancer 2 weeks ago and just finished his first round of chemo. I’m looking forward to following your story.
Melissa, I am sorry your father had to join this ‘club’ but I welcome you and wish him good luck going forward.