treatment

A fine line between educating yourself and making yourself crazy.

Posted on by mainelyhopeful

When I first found a lump, before I even saw my GP, I became a googling fool.  With each progressive test and referral it became a near obsession.  I’m sure I’m not unique in this. In fact, although I never mentioned my nocturnal forays into the darkest reaches of the internet to my doctors, they all said something to the effect of  “don’t spend all your time on the internet” “try to stick with sites that give accurate information” (I was given a pre approved list at this point) and later on.. “don’t listen to well meaning friends who have been through chemo. Their experience won’t necessarily be your’s” (and hasn’t that been the truth?!). But just like when a woman becomes pregnant for the first time and wants to immerse herself in stories of pregnancy, labor and motherhood.. you can’t always filter the information so all  you hear about  are the great experiences, perfect patient/doctor relationships, spouses and family that support without fail and happy endings.  Even while inwardly cringing and wondering at the motives of a person who will share tales of 36 hour labors, nurse Cratchets that took glee in their misery, babies who cried 24 hours a day for 2 years straight.. you still can’t help listening.  And researching. And comparing.  Since my diagnosis, surgery, chemotherapy, and impending radiation I have clocked plenty of google time. I’m not sure why I continue to and what I expect to find today that I didn’t find last Thursday.  

This isn’t new behavior for me.  Even before I had access to the internet.   There was a time that I worked as a medical transcriptionist out of my home. I worked for many different disciplines, including cardiology, family medicine, obstetrics, ENT and later psychology and psychiatry.  When I started out I would recognize myself in the patient’s list of symptoms.  The more unusual and obscure the more likely I was to be experiencing the same thing.  I didn’t bother to see a physician regularly during this time.. I had the power to diagnose myself!  I would type along, anxious to get to the diagnostic part of the report and find out exactly what was wrong with me.  Of course nothing was wrong with me and I knew that, but it was easy at times to “go there”.  Compare yourself to someone else based on a handful of similarities.   If have the same diagnosis and treatment plan as another patient and she terribly sick with the chemo, will I be?  If I’m not does that mean the chemo isn’t working? What if it’s the wrong dose?   If someone with my exact diagnosis who did the same treatment has a recurrence 3 years down the road, is that my future?  Why is my hair coming back while still on chemo while someone else’s has made no appearance 3 months after stopping? I’m sure that means mine is going to fall out again, right?  

It’s honestly crazy making, but on the other hand, comforting in some way or we wouldn’t do it.  Btw.. I stopped trying to diagnose myself about the time I switched from medical to psychiatry.  Now I only diagnose friends and family.

I’ve been doing things without my consent.

Posted on by mainelyhopeful

I do a lot of online shopping for my business so getting packages delivered is nothing new, but every day is an adventure lately when mysterious boxes arrive and I have no idea what they could be. Apparently within the last week someone decided I needed two boxes of business cards.  I do actually need them but one box usually does me for the better part of a year.   It  was probably the same someone who joined two book clubs within a weeks time and managed to order several duplicate books.  Someone has also been misplacing things around the house lately.  At least that isn’t costing me any money, but it is very annoying. I have it on good authority that chemo brain isn’t “real” because there is no treatment for it.  So.   

Nothing too terrible or dangerous has resulted from this non side effect that doesn’t exist. I continue to lose words and at lunch wanted badly to order killer bees but managed to find something on the menu.    I did try to remove my makeup with Biotene instead of witch hazel  the other day and thankfully realized it before reaching my eyes. This morning I put saline nasal spray in my eyes instead of eye drops.  So far I haven’t become lost, which anyone who knows me must consider a minor miracle. I have zero sense of direction.  Turning me loose pretty much anywhere and telling me I had to find my own way back would be hilarious albeit kind of cruel.  I’m sure my family has considered it.  Especially when I accuse them of hiding things just to mess with me.  

I don’t mean to cause  anyone worry.  As long as I am kept away from hazardous chemicals, anything hot, sharp or requiring a major credit card I should be okay.   

I should offer a disclaimer for my oncologist. She did not suggest I was making up the symptoms, just letting me know there was nothing to be done since there is no medical evidence, just a lot of anecdotal evidence of brain fog.  I’ve decided to embrace it and enjoy this time in my life when I cannot be held responsible for anything.  I promise not to take advantage.

 

Vivid dreams or acid flashbacks?

Posted on by mainelyhopeful

Okay, I’ve never actually dropped acid so I’m going to have to go with blaming the AC for my nightly forays into the most bizarre mind twisters that you can imagine. I blogged about this phenomenon after my 2nd treatment but at that time it was not a daily occurrence. Though I have always dreamt, most days I wake up with only a vague memory of the dream and by the time I have had my first cup of coffee I’ve already forgotten it. Once in a blue moon    the dream will stay with me for part of the day if it was disturbing in some way or very pleasant and I want to hold onto it. I rarely have nightmares.  This is different. Since my final AC on 2/28 I have woken up every morning between 4 and 4:30 a.m. I fall asleep between 10 and 11 every night and sleep soundly until that time. Once awake it will take me as long as an hour to fall back to sleep and I will sleep until 7 or so, but I will have vivid and such detail oriented dreams that I can remember all of them.  Some feature Disneyesque animals, family members, locations that are all recognizable but morph from place to place so that it feels like I am in several places at once.  One had me in the hospital. I was in room 407 and could clearly read that on my wrist band, along with my name, dob and medical record number, which sadly I have memorized.  I was wandering around, sick and confused and begging for help.  I could not get back to my room and no one would help me. Stairways would turn in to fun house slides and elevators were actually large rooms revealing hospital personnel doing God knows what behind the scenes.   Turning a corner brought me to Downtown Disney (the Disney theme is recurring for some reason.. I guess I need some Magic). The dream went on forever and I never did make it back to room 407.  I have had dreams about babies and dreams that caused me to wake up laughing.  Dreams that were so real I could smell flowers and grass and taste things.  One dream was about a 4 year old girl (that to my knowledge does not exist) an old family house and some mysterious family secrets. I woke up worried about her.  

Clearly the dream about the hospital doesn’t take a genius to figure out.  Being a cancer patient (or I imagine any patient with a life threatening or life altering disease) leaves you feeling at the mercy of people who don’t know you and don’t have an emotional interest in you, only a clinical one.  That’s not a bad thing, except it can sometimes make you reluctant to ask for more.  I do find myself sometimes minimizing the effects of my treatments. After all, I’ve memorized all the possible side effects, taken measures to treat them as they occur and know which ones require medical attention, so they hardly seem worthy of a mention at my visits if they’ve  already resolved.  It’s like I wouldn’t  dream of bothering anyone. Especially after my thwarted nocturnal wanderings back to room 407! 

It’s gotten so I am alternately curious about my next dream and dreading it.  When my eyes snap open in the wee hours I know the next few will be interesting. I also know I will likely be exhausted all day. 

  

If you have nothing good to say ….and other lessons

Posted on by mainelyhopeful

So life lesson this week was no one wants to hear a cancer patient complain.  Even a tiny little complaint will be met with a panicked “STAY POSITIVE”. I think I am fairly positive most of the time. I try to focus on the fact that I have had very few of the really horrific side effects that so many others in my boat suffer from and for that I am grateful. Doing a quick mental inventory of the people who I interact with daily, both in person and otherwise, I probably complain far less than most, especially about health issues.  When I commented to a relative that I was struggling with my concentration and fatigue, the response made me feel like I should keep those kinds of things to myself unless I am sitting in my physician’s office and since I always have a family member with me during oncology visits, I now feel like I should temper the complaints even then, lest I upset someone.  When I vented to some friends about how that response made me feel I was given a laundry list of excuses for the relative, again making me feel as though I should have kept my feelings to myself.  One lesson I am taking from this is to be a good listener and not try to minimize other people’s feelings or, worse yet… tell them how they should be feeling. The second lesson is to stay positive. Even if you have to lie 🙂

 

Yesterday was the relay for chemo

Posted on by mainelyhopeful

And I was the baton. My mom brings me for my treatments every 3 weeks and soon that will increase to every week.  The cancer center is 30 minutes from my house but only 15 from hers. My house is also 15 minutes from her’s, but in the opposite direction. Normally she picks me up making it a 45 minute trip for her. She’s happy to do it but I feel kind of bad, especially in bad weather.  Yesterday my dad collected me, dropped me at mom’s and she took me to the center. Later we went back to her place where my husband picked me up after work. I’m happy to report no one dropped the baton and we were even fed and got to visit with my sister and her significant other!  It was a nice day in spite of the reason for it.

Chemotherapy went well, blood work looked good and as usual the nurses were great.  I had a new one this round. She was very efficient but joked around and the time flew right by. Though this was my 3rd treatment it was the first time I was actually in a chemo bay. I had a nice corner unit that was warm and sunny, a comfortable recliner and television. I had my “chemo bag” with a few comforts from home and a novel. Oh I should mention, not everyone was comfortable. My mom kept sliding off the poorly designed couch and was finally given a straight chair to prop her legs on.  I was teasing her it’s because she’s so short, but that couch did look pretty uncomfortable. I offered her the recliner, but for some reason no one ever takes me up on that.    Though the bays have a little privacy in the way of curtains you can hear what’s going on around you. One lady started walking from bay to bay, wheeling her infusion pump along, asking people about their diagnoses and treatment plans and going into great detail about hers. Mercifully she ran out of steam before reaching me.  There was a bit of moaning and complaining going on and you didn’t have to look around to know it was coming from the men.  My nurse said that’s usually the case and we started chatting how men generally do not take illness and pain quite as..umm.. stoicly as women do, which prompted this little joke from her:

A husband and wife presented to the hospital in labor. Once settled in they were told about a new experimental option where a percentage of labor pain could be transferred to the father of the baby allowing him to share in the experience while making it a bit easier on the mother. They both agreed. With the next big contraction he got 25% of the pain and exclaimed “That was nothing”, so they upped it to 50% for the next one.  He still insisted it wasn’t bad at all and was starting to wonder what all the fuss was about. Finally it was upped to 75%.  The baby was born, mother was happy with the small amount of pain and her husband was still amazed at how easy it was.  Later when he returned home he found the mailman dead on the porch.  HA!

I did end up fessing up to only taking half the prescribed dosage of the steroid following my last infusion. It wasn’t deliberate and I’m still not sure how I managed to mess it up, but I didn’t have that big steroid crash that left me feeling so bad the first time around, nor did I have the terrible acne that was attributed to the steroid. My appetite didn’t rage out of control and I slept well. I was prepared for a lecture and a list of reasons I had to take the higher dose, but am happy to report I can remain on the smaller one.  Any time I can take less of any medication, I’m all over it, but especially this.  I like to call it Forrest Gumping when someone in the family does something kind of boneheaded but it works out to their advantage.  So this week I am proud to say I Forrest Gumped my way into less medication and less side effects. Chocolate anyone?