A friend of mine was diagnosed with breast cancer. I wrote this list to help her and thought it might help others too. This is a list of tips that helped me get through the trying days of treatment and recovery.
• Always make sure you feel confident about your main care provider. If not, change to someone else immediately.
• When choosing a care facility, don’t fall for advertising you’ve seen. Check for reviews including their rate of cure. I never thought to look for reviews when choosing my facility. Reading them opened my eyes to many things.
• Take a spouse, relative, or friend with you to caregiving visits so that you always have someone who can offer support, help you remember what was said, what to ask, and to be an advocate for your care. Sometimes they see things going on with you that you don’t recognize and this can be helpful to your care providers as well as to you.
• Get a handy calendar (or use an electronic one) as you will have lots of dates to keep track of. When you are tired or suffer from brain fog (or chemo brain) it’s hard to remember where to be when. Your calendar can be your friend.
• Keep paper and pencil near all your phones (or carry some in your purse). When you are called with procedure dates or other information, write them down. Include the location and directions (if needed). Ask how you need to prepare for the procedure and/or anything you need to bring (if not already advised). Don’t hesitate to ask the caller to slow down repeat information so you can write everything down.
• Ask about free resources available to you. Sometimes you don’t know what to ask for until you need it. Our local area provided many free services such as massages, reiki treatments, support groups, even a crochet group. There were also free, educational classes. I received a beautiful, free wig.
Last night I had a dream I was in a packed restaurant. It seemed like every time I thought I had found a place to sit and order, something would happen and I would lose my seat. I couldn’t even get a seat with my mom and cousin.
I woke up feeling kind of dejected. It's weird to not really know where you belong or where you fit. It's crazy because I remember when my oldest was in middle school they told him he HAD to know what he was going to be when he grew up. How else would he know what courses to take? He became upset because he didn't have a clue. I kept telling him he didn't have to know. "You can make changes throughout your life,” I told him.
And here I am in my late fifties finding myself in the same position. Where do I fit? What should I be doing now? Where do I belong? I feel lonely, yet I am not alone. I have a good support team. I think it's more a bit of impatience, wanting to be wholly well and not, wanting to be free to be, and not. I know all these things take time, and I am getting there, I'm just not there yet.
I have a feeling that in a few months I will look back on this and laugh. I’ll have found whatever my “thing” is for this life’s era. I will be happy. I will feel fulfilled. I know this because that’s what happens in the void. It comes. It brings darkness, and then, like the eclipse, the light returns.
(The following was originally posted on my Carepages blog for family and friends during my treatment.)
As of August 29. . .
It’s been 10 weeks since my last chemo.
Over 7 weeks since my surgery.
My hair is about 1/4” long on the top of my head—a little shorter on the sides, but filling in nicely. (Yes it is dark! A few stray strands of gray—as before). My eye lashes are growing back and my eye brows are about 2/3 back. (YES!)
Nevertheless, I still have numbness in my fingers and toes, still have days of no energy, and grumble about a few other lingering side-effects. It’s to be expected, I suppose, but I am not settling and tell my body daily to "get better."
I have started exercising. . . with one-pound dumbbells. I do five or six lifts, then I’m done, but will keep working. Tim and I are talking about joining a gym for the winter where we can start slowly and build up our stamina. I have now walked around the block on two separate occasions. That is a huge step in the right direction.
Tim’s surgery went well. He’s at that “a little bit crabby” stage, which means he’s healing fine and frustrated for not being back to perfect. (I will be two weeks on Wednesday.) The new nerve stimulator is working fine and he is, so far, very happy with it. He has learned no golfing for 4 weeks. He's sad about that, but it is a small price to pay for years of relief.
READ MORE from my most recent blogs.
(The following was originally posted on my Carepages blog for family and friends during my treatment.)
I had written the piece below when I received news from my doctor. I hope both will bring a smile to your day.
After three visits and three weeks after my surgery, my surgeon shared the results of my pathology report. He said they had sent the tissue from my radical mastectomy to a specialist “just to be sure.” The results came back that no cancer was found in any of the samples.
The Cancer Center has told me no further treatment is needed at this time. I am not a candidate for any hormonal therapy as my type of cancer does not respond to it. I am not a good candidate for radiation as, apparently, I had more than my share in the 80s when I had Hodgkins (which may have even been the cause of this bout). My oncologist says I am in “complete remission.” My radiologist said, while they can’t guarantee I am cancer free and should be checked every three months, he was delegating me to “follow-up land.”
My mother-in-law asked if I “cried happy tears.” I said I didn’t think it has really hit me yet, or maybe I had never really accepted the fact that I had cancer to begin with. I think it also makes a difference that despite having this great news, I am still dealing with some chemo after effects which cause lethargy, loss of appetite, numbness in my extremities, and other side effects (like the loss of my hair). I’m told to expect several months before these things subside. So being told I am in remission is great, but I wish I could say I feel great as well. Each new tiny step forward is a giant leap for me. Little things, like being able to climb a flight of stairs without sitting down at the top, mean a lot.
So about three weeks after my last chemo, all my eye brows and eye lashes fell out. I had seen online an eye brow stamping kit which promised to make perfect eye brows for all women, not just those who were browless. The kit was less than ten dollars, so I happily purchased it, hoping to restore my eye brows with ease.
Let me explain what this kit is like. There are two plastic handles that each holds a piece of foam rubber in the supposed shape of the perfect eye brow (one left curved, one right curved). These sit in a case that also holds some powder—brown, in my case. You rub these pieces of foam rubber into the powder, then press them into place. In theory, you then have perfect eye brows. However, the result was more like having taken a Chinese calligraphy brush and splayed it above each eye. I looked more like Groucho Marx. Very comical. Apparently, my eye brows have been so thin for so long, having natural, thick eye brows did not look right at all. I resorted back to drawing them on with tiny pencil strokes. My neighbor seems to think that is way too much trouble, but I find it only takes a minute or two and no one is the wiser unless they look really close.
One morning, I grabbed by famed “Better Than Sex” mascara, pulled the applicator out to apply it, and discovered there was suddenly nothing to apply it to. I’m not sure where all my eye lashes went over night, but they were gone. I purchased a kit of falsies. I am aware that some women wear these every day. I can’t imagine that. Apparently, the user spurts a little glue on these tiny, almost bug-like things, then sticks them on to their eye lids. I haven’t yet been able to bring myself to do this. I feel almost certain that I won’t be able to keep my fingers off of them and will end up with them half stuck on or crooked, one on and one off, or some other conundrum. I’ve recently learned there are magnetized ones (thus no glue). Unfortunately, you need to HAVE eye lashes to magnet them to, so that won’t work. I can’t draw those on, so I’ve been going without. Maybe one of these days, I’ll get brave enough to glue some on.
There’s another kind of falsies I’ve explored. I knew I would need one after surgery. Trusting the write up I read online, I purchased a fiberfill one. “Soft to the skin for after surgery” it proclaimed. Perfect. Or maybe not. Ladies, think of a 1980s shoulder pad, except more pointy. This is what I stuck in my bra a few weeks after surgery. The problem, I discovered, and later learned from reading more appropriate information, is that they are firm (very firm), unlike the real thing. It also turned out to be slightly larger than its real twin, which bothered me, even though I’m sure no one was measuring. Lastly, which I also could have learned had I read more before hand, was that they don’t stay in place. One time I looked down and had one on the right and one in the center (none on the left). I must say, having to push it back into place is not the kind of thing you want to do in public. It takes some, um, real finagling.
I went back to the online store and purchased a silicone one. You might find this hard to believe, but I was absolutely giddy about it. The silicone feels and looks more natural, is closer in size, and seems to stay in place better. (I now know they make special bras for that sort of thing, but I haven’t purchased one yet. It’s not something you can go down to Victoria Secret to try on.) I haven’t decided yet if I want to do reconstruction, which I could do in a few months. It doesn’t appear to be a pleasant surgery. The only thing I want right at the moment is to feel well. Having more surgery is not very appealing.
The last falsie I have is my wig. Everyone loves it and tells me it looks very natural. I don’t like wearing it. It isn’t how I would typically wear my hair. Sometimes I think I'd rather walk around ah-naturale (think G.I.Jane). I'm afraid I would scare some people. I look forward to having real hair again, which right now is about 1/16” long. (Better than nothing.) I promise not to complain about fly-aways, split ends, and other hair frustrations. From the fuzz growing on my head, it looks like it will be the same color it was with a few gray hairs thrown in. They tell me it may come in curly. I really don’t care as long as it grows. I spend a lot of time thinking of the Playdoh hair stylist set where you squeeze to get Playdoh hair. I close my eyes and pretend to squeeze and say "grow-grow-grow!"
So that’s where I am at. I return to the surgeon’s on Tuesday to have my drain (finally) removed after four weeks. As I work toward my whole healing, Tim will head into his back surgery. About six weeks ago, his back stimulator unexpectedly quit. This little device deferred about 50% of his back pain, so he’s been struggling through without it. He is slated to have a new one installed in two weeks. We surely have had an interesting year.