They say that bad news is easier to deal with than uncertainty. I do believe it’s true. Give me something to deal with and eventually I figure out how to cope with it. I still am figuring out how to cope with a diagnosis of stage IV breast cancer. That one may take me the rest of my life. In that way, I hope it takes me a long time to figure it out.
The evil of “waiting” is a popular topic among those with illnesses. We spend an awful lot of time waiting. We have copious amounts of time in waiting rooms, exam rooms, lab offices, hospital admissions, chemo rooms and on and on. Then there’s the other kind of waiting: test results, scan results, waiting to see if treatment is working, time elapsed to see if abnormal test results are a fluke.
I’m in one of those waiting periods right now. My blood test this week showed an increase in tumor markers. This usually signifies that chemo is not working well anymore and the amount of cancer is increasing. However, as I’ve discussed many times before, this test is not precise. There is a reason it isn’t a screening tool to see if someone has breast cancer. It’s not a great test, but it’s one of the only ones we have. I’m not going to mention particular numbers here because the variation among individuals is so great and interpretation of trends over time is important and I don’t want anyone to be comparing their numbers to mine without a doctor’s help.
The jump in number was more than what can just be dismissed as normal fluctuation. But one blip does not a chemo failure make. A few months ago I had a few rises over the course of six weeks before my oncologists decided this was picking up resistance to chemo even before my scans showed any change. We try to keep ahead of it. My choice to monitor often and closely is not the right choice for everyone. Not all doctors would even agree to such a schedule. Each person finds the balance of time and testing that works for them.
So, for now I wait. We recheck, see what the data points are. One anomaly won’t be reason for an immediate change in treatment with my team. I’ve been through this once before, watching slow rises and then needing to change chemo. I didn’t think it would come again this soon. I’m hoping it hasn’t.
I hope for the best, I prepare for the worst. That’s all I can do.
But the waiting? The waiting is a nightmare. But I do always recognize that in that wait there is hope, because waiting is time.
If hoping and wishing could make things so I’d be cancer-free, or at least with chemo working for decades.
If wanting something could make it so…
Oh… there’s a long list for me on that one.
Link to Twitter
You and I are so different that–although offline we have some mutual friends and many mutual interests–I suspect we’d rub each other the wrong way. (I’m definitely one of those alternative health junkies who would annoy the crap out of you.) Yet I deeply value your passion to keep things both honest and beautiful even in the face of some of your worst fears, your love for your friends and family, and your willingness to bring all of us on your journey through the written word. Know that, for what it is worth, I send you every good thought I have and am rooting for you in any way that may be of service to you.
Thanks for that comment, it made me laugh (always appreciated). We all do this in our own way, and I appreciate that even though we “do things differently” you can still connect to what I am writing. That means a lot. I try very hard to present my information as “right for me” but know it isn’t for everyone. Thanks for reading, and the support. And for tolerating the number of quotation marks I just put in this short reply.
Just sending extra hug here. You’re putting words to something another friend just emailed about last night (one shadow not on PET scan, what’s it mean? another MRI in five weeks). As I’ve said before and so many others too — I so appreciate your putting eloquent and clear, compassionate words to your experience. It’s illuminating — and it’s helpful. But I wish you never knew enough to do so.
Is it OK if I start a profanity square for you? It’s kinda like an un-prayer circle. With adult beverages.
I’ll join that one! Except, since I’m on chemo, I can’t have the adult beverages for a bit. But I promise to make up for the lack of colorful drink in the colorful-ness of my profanity…so, can I still join?
Everybody welcome! Tasty virgin beverages available — with and without umbrellas.
Lisa, you’re so very right about the waiting. You’re on my mind and in my heart always.
Oh the waiting is the worst…at least when you know (whether it’s test results or whatever), you can figure out how to react — the “what if?” in the meantime is so frustrating. Wishing you patience and peace of mind!
It’s not easy, and I’m sorry you need to deal with the limbo and the cancer at all. I hope those results were just a blip and you don’t need to change up anything.
We wait with you, Lisa. I hold you in my heart, and hope for good news.
The waiting is always the worst. Hopefully, this will turn out to be nothing and you can continue your treatment as is.
Waiting is a nightmare. For me, the most difficult part of a cancer diagnosis. We are expected to take part in the Emotional Olympics! From the bottom of my heart, I wish you well.
Kim
Ahhh, yes, the waiting in waiting rooms endless time spent waiting. Whole new level of time awareness. I’ve come to love the puzzle section of the newspaper for that waiting space. I quit my job and midwifery education when my healthy, beautiful grandson was diagnosed (at age 1.5 years) with aggressive neuroblastoma, now I am available on call as a support person, driver (she needs to tend to him in a car in case he throws up, which after all the chemo and radiation, is many times a day) for my daughter, have been daily for the last 7 months. And ah, the waiting rooms and hospital floors and surgical units and PICU’s and radiation waiting rooms we know so well.
Cancer blogs are kind of an obsession of mine these days, I think so I can know a little more about what my awesome, gorgeous little fellow is going through, because he has no words: and no awareness. He doesn’t know he has late stage cancer. He just knows every minute of every day is pretty awesome (except when it’s not) because we all love him so, as do the staff, nurses, doctors, janitors, families, CNA’s etc etc etc.
He has no fear and no imagination, so cancer is something entirely different for him. But if he gets anywhere near his 40’s, or even his 20’s, or his teens, our joy will know no bounds.
TS Eliot wrote about measuring out our lives with coffee spoons: “For I have known them all already, known them all: Have known the evenings, mornings, afternoons,
I have measured out my life with coffee spoons…”
My grandson’s life is lately measured by teaspoons, then individual grains of coffee…but each are so precious. I would trade places with him in an instant, at age 58, I’ve lived an eternity, and just want him to have a chance to ride a bike?
But he doesn’t worry about these things, he takes it each day, and laughs with joy when a bus or a firetruck goes by, and loves his life, every present moment of it.
All good things to you Lisa, and all of us on our journey of either grains, teaspoons, spoons, ladles, shovels or dumpster loads of time…
Beautiful post! Thoughts and prayers with your family and sweet grandson
I understand the agony of the wait. Sending my best thoughts your way.
I also understand how difficult it is to wait, Lisa.
Your writing is so meaningful and important to your readers.
Keeping you in my thoughts and prayers.
I truly identify with this post. Waiting is one of the hardest things to do. So many horrible things go through my mind during those periods of time. The fear has also held me back from testing I should be having. I try my best to overcome it and usually do, eventually.
Although, as you stated, hoping and wishing can not make cancer go away, I still hope and wish you the very best outcome with your next round of testing.
I know you have not been feeling very well since your last test and I continue to stay close, sending love and support your way daily. Please know that you are not waiting alone. There is a whole army of people right here waiting along with you.
Once again, so eloquently expressed. Thinking of you and hoping for the best.
I am new to reading your blog. I too have stage IV BC, diagnosed in Oct of 2011. I am at Sloan Kettering in Sleepy Hollow (Tarrytown,NY). Originally I was down in Manhattan and also had Dr. Dang she just thought it would be easier to get to the Sleepy Hollow facility as it was closer to my home, especially when your going for chemo, which I have been for the past two years, and your right some work for a while and others don’t work at all. So far I have been on 4 different regimens of chemo. I have a lession in my liver, that is like a roller coster, goes up and down, my lastest scans show it has gone down, however they did see two swollen lymph nodes in my abdomen area, which I knew because I felt some pressure in that area literally three weeks after my last scans which were done in April.
My appointment is tomorrow, but my Doc, Dr. Carolyn Wessherheit will call today to let me know what chemo regimen is next, whether I stay on my current one which is gemzar and add another one to the mix. We will see, but hang in there and thank you for blogging, it so helps to read what someone else is going thru and I plan I reading your blogs for many years to come.
Hi, I am also new in reading your blog and I truly agree with what you said, that waiting is the hardest! It brings many good and bad thoughts in our mind, including anxiety, fear and frustration. But it also brings hope. I hope you will continue to be hopeful and have positive thoughts on the days ahead. I’ll be keeping you in my thoughts and prayers.
I just came across your blog. I was diagnosed with Stage 4 breast cancer in April 2011. I am currently in a remission with no evidence of disease. I have read several of your posts and can really relate. You have a gift with words and expression that anyone with breast cancer can certainly benefit from. Thank you for sharing your experiences and thoughts. I think that these types of blogs are so helpful for many people, and I am praying that your wait will not be too difficult for you and that your news will be positive and hopeful.