Wednesday, February 13, 2013
I’m starting to see a definite link between Chemo and childbirth. What? you say! Have the drugs gone directly to her brain this time? Probably. But I think I’ve found a very supportable theory. Remember how I preach about keeping a journal during your treatments? This way you can refer back and see if you’ve had that reaction before; how you treated certain side effects and what, if anything, was successful; keeping track of when you got what type of pain and about how long before you were back to “normal.”
Might as well handle that issue right now – you will never be “normal” again. You’ll probably be better than “normal,” stronger than “normal,” tougher than “normal,” more caring than “normal,” and more resilient than “normal.” Your faith will never be “normal” again. You will never look at your family or friends the same way again. Each day that you’re able to open your eyes and take a breath will be incredibly better than “normal.” Your life has changed forever. But back to that journal!
Okay, each time I’m approaching a return to treatments, I re-read the journal. It gives me a feeling that I’ve developed some sort of control, and you all know how I feel about control. “Tuesday, not too bad but back pain came back.” “Friday, only a short walk today, but still beautiful.” “Sunday, probably shouldn’t have taken that Advil for the knee pain with a glass of wine – both came up, but I was able to eat dinner later. It’s all good!” “Monday, slept great – once the drug got out of my system.”
Having gone through a similar week this time, it should have read: “Tuesday, OH cr#%p that hurts!” “Friday, upper back pain, shortness of breath, and calf cramps. Get out of my way you seagull, I’m trying to make it to the ramp.” “Sunday, NO ADVIL, I’d rather deal with the pain. NSAIDS are supposed to help with the Neulasta pain. Yeah, right! To whomever conducted that study – it only works if it stays down. And by the way, doesn’t matter a wit about the wine. Those pills don’t stay down with or without alcohol.” That does pass. Eventually I begin tolerating NSAIDS again – just not when I need them most – after the Neulasta shot. “Monday, finally got an hour or two of sleep after spending the night in my new tiled bedroom, the one with the throne, with a trash can on my lap.”
That sounds horrible. Well, actually, it was – BUT, it’s only a few days. Then it really does go away. Until the next time. All week, I found myself saying, “Oh cr#%p, I forgot about this part – or “Wow, I forgot how that can hurt.”
Okay, that brings me to the childbirth issue. Anyone out there who has ever given birth knows that if we remembered exactly how labor felt – with great clarity and honesty – NO ONE would ever have a second child. So, for the sake of the continuity of mankind, no journaling, no scales, no gruesome details in writing. Not that I really think there’s much chance of that. Once that little bundle is placed in your arms, all thoughts of pain go away (that comes back when they’re teenagers). New Moms are much too busy to write anything down. But chemo patients need to. You really do need to know what’s coming so you can deal with it.
It finally dawned on me that what was necessary was clearer, longer, and more accurate entries. Use of the 0-10 scale would be useful. I know you’ve all heard it; “How is your pain right now on a scale of 0-10, 0 being none and 10 being the worst you’ve ever had.” It would make everything much clearer. “Tuesday, Oh cr#%p, that was a 12 – reduced later in the day to an 8. Heating pad helped.” “Friday, this walk started out as a 10 on the enjoyable scale but has slid its way down to a minus 4. Get out of my way bird.” You get the idea. Clarity and detail are what your journal needs – not quick quips.
I’m not trying to scare anyone, especially me, but honesty really is better. Most of that stuff really will come back, to varying degrees, and depending on whether you found a coping mechanism for it the last time. My new journal is a little grittier, filled with numbers on a scale, and – let’s face it- honest! Honesty really is the best policy and preparedness the best management strategy. But today is better, and each day for the next 2 weeks will get better. And, yes, then I'll start over again. I need to remind myself often that there is a long-term purpose to this - remission. A nice long remission will help me forget - see, like childbirth!
Wednesday, February 6, 2013
Well, yesterday’s treatment went very well. It was a long day, but we knew that going in. For some reason – probably for a lot of reasons – I was extremely relaxed and calm. Deep down, I really believe that this cycle will be the one that gives me a nice long remission. I hope I’m right, but I feel very positive about it. I’ve been trying to practice my yoga breathing and some stress relieving meditations as well as visualization. Trying to concentrate on all that is probably why I forgot to worry about the chemo dripping into my port.
There really was a lot of comfort and well-being about being in familiar surroundings – the lab techs, the pharmacist, the wonderful oncology nurses, the bright and cheery room, the recliner chairs, and the smiling faces. Then the topper was when half my Drs. staff came up to visit in the afternoon. Talk about feeling special and very loved. My kids were texting me, my friends were sending funny photos, and my resident Guardian Angel was right there next to me.
When we finally arrived home last night, we were welcomed by a big bowl of homemade chicken soup in the refrigerator and a warm, freshly baked loaf of bread delivered by a new friend. What a wonderful surprise!
I know that the Moffitt surroundings would have been extremely capable and, I’m sure the people would all have been friendly and caring. But this was more like home. After all, I’ve been in and out of there for four and a half years. And last night, when I climbed into my own bed – and woke up this morning without the thought of a 3 hour drive home, I knew we had made the right decision – at least for this time.
So, today I’ve been goofing off and taking it easy – even though I feel really great. When all the good meds wear off, that won’t be the case – but it’s wonderful for now! My pelican patrol boys have been hovering all around our balcony and doing all sorts of aeronautical tricks for us. Our sparrows and new resident cardinal couples have been checking in, too. I think they all know what’s going on and they’re glad we’re here, too – not in Tampa. Actually, I think the little ones are grateful because we’re here to feed them! The big ones just like to show off for an appreciative audience.
So, that’s my update for those who care – and I truly can’t believe how many of you do care. It’s unbelievable when I realize how many of you are out there rooting and praying for me. You are my support system, my band of angels, my bubble of safety! Thank you all from the bottom of my heart!
Sorry about my “for those who care” comment. But it reminds me of an old Irish proverb:
May those that love us, love us
And those who don’t, May God turn their hearts
But if He can’t turn their hearts, may He turn their anklesSo we’ll know them by their limping!
Sunday, February 3, 2013
Looks like the clinical trial will have to be put on hold for now. Moffitt is still doing pathology to see if I qualify for the test. Odds are that I will, but without me – at least for the moment. This new and decidedly more despicable version of my cancer decided to do some spreading this past week, causing the need for some immediate intervention. Both my personal guardian angel MD and the clinical trial MD in Tampa made it pretty clear that they would rather I didn’t wait for the trial paperwork to be completed. The earliest that would have been possible – with everything working exactly on time (hah!) – was February 11th. Everyone was in agreement that I should begin treatment now.
So, tomorrow morning the new regimen begins: Monday/labs – Tuesday/chemo – Wednesday/Neulasta injection. Then 3 weeks off (six times). This is a drug that I’ve taken before and it worked very well. It knocks me down for a while, but it also knocks my vile opponent for a loop, as well. Hopefully, it will work as well this time around.
I really had high hopes for the trial. As I said before, I understand clinical trials. I was looking forward to all the technical details and protocol requirements and clinical discussions. I was anxious to possibly take part in changing medical history – to participate in testing a drug that might actually make a difference. But my BIG BOSS has other plans for me and that’s just fine. I need to trust more and just go along with Him. He knows how I can best make a difference. Besides, there's a lot to be said for going home to my own bed instead of to a hotel room after chemo and resting in my recliner the next day instead of in the car for the 3-hour ride home.
So, for now, I am reading my chemotherapy journals and packing my chemo bag. I have my anti-nausea meds, my pre and post steroids (not the Lance Armstrong type), my thermometer, BP monitor, and journal next to my bed. I’ve changed my mammogram appointment and cancelled my teeth cleaning until after all the treatments are completed. I’ve put a batch of sauce in the freezer along with the makings for other easy dinners. The pantry has lots of chicken noodle (sick) soup and Ensure. I’m gathering my puzzle books, lots of yarn for my shawls, my Kindle and my biggest water bottle. Oh, and of course, my Prayer Quilt is getting a wash and dry and we’ll all be ready to go!
As I was preparing my “stuff,” I was recalling some “Chemo Etiquette” I read in a magazine a long time ago. It’s very good advice – for newbies to the chemo room and also for us old warhorses!
Don’t be quick to share your prognosis or details of your disease. And don’t ask others about theirs. Be sensitive to the fact that others in the infusion room may be at different phases of treatment and this kind of discussion could be unsettling. You never know what other people are dealing with.
Read others’ body language. Infusion rooms can be lively places, where people chat, share tips, and bond. But not everyone may be feeling talkative. If someone is immersed in a book or wearing headphones, they may prefer to enjoy quiet time. As a matter of fact, if YOU want some quiet time, wear headphones – even if you have nothing playing!
Thank you all for your many kindnesses and thoughtful notes and, of course, your invaluable prayers. You keep me strong – we keep each other strong. That’s what life’s about. I know it’s not original but – Life isn’t about waiting for the sun to come out, it’s about learning to dance in the rain! Friends are the Sunshine of Life! Thank you dear friends!