chemobrain or just plain lack of ambition?

It could be laziness, too, that prevents me from getting back to wintersong, but chemobrain has a certain ring to it, don’t you think?

While my stomach and digestive system is semi-cooperating at this point, I am suffering–though not horribly–from peripheral neuropathy. The tips of my thumb, pointy and middle fingers are sort of numb and shriveled, the way fingers look when they’ve been in water too long. That makes it difficult to pick up tiny things and I’ve wracked up two broken dishes in the past month thinking I had a good hold on them but didn’t. Once I wasted a whole serving of pudding. Typing makes my fingers feel funny, but then so does nearly everything else and I can’t just do nothing. I also feel the effects in my toes, sometimes have to jump to my feet to undo the “drawing down” of my toes and resulting muscle cramps. Thankfully they don’t happen often, and mostly when I’m barefoot or move my toes “funny” so I can sort of avoid those most of the time. Hubby seems to think his job as my informant is finished at this point of my “treatment” or “cure,”  and I do stop by and read other blogs during the week ‘though I don’t always comment (the fingers!).

What I have been doing is a lot of reading, closet organizing, planning how I’ll run the rest of my life in the future, what’s important, what can be let go. The room addition, while thoroughly not necessary but something Hubby wanted to do since almost the first day we moved into this house, is coming along. We’ll gain about 4 1/2 feet of space and our oversized furniture that fit perfectly in all our houses (with big bedrooms) until this one will at least not block the view from our BR windows to the wild world outside, and very soon there should be a place for everything to go–a longtime dream of mine.

I haven’t seen the grandkids as often since we haven’t been available to take them after school every Friday since this whole thing started. In the meantime, Thomas is wearing glasses, bewitchingly green/black rectangular frames that seem perfect for his round little face (like mine). He picked them out himself. Who knew he had such good taste. Although he’s still a kid in every sense of the word, there are times when I get good glimpses of the gentle man I believe he’ll grow up to be. Vimmy (the 2nd, daughter #2 was first) is growing into quite a little dark-eyed beauty and every inch a girl who knows how to fight like a tiger if she’s pushed by all the big boys around her (brother and his friends). She has a “best friend” across the street but he’s a beautiful little boy around her age with long silky lashes and he lets her boss him around enough to keep her happy. Although she looks at me funny when I’m wearing a wig, she doesn’t seem to unduly concerned which is good.

As for hair, I can hardly wait til I begin to grow some! My head gets so cold some days I have to wear two hats at a time in the house, and wigs are “open weave” enough that I’ve taken to wearing hats over them if it’s a windy day. It could be starting to grow in a mere weeks and I can hardly wait to see what color it decides to be. Right now the fuzz looks totally white. The dark spots at the base of the skull have disappeared if that’s any indication that dark hairs are gone forever from my head.

Other than finishing up the work on the house and getting everything back in place, I find I have little ambition. Everything seems to have taken a back seat for awhile. Maybe after I have the followup CT/PT scan on the 20th, and learn the results (!), I’ll be better able to refocus. In the meantime, I believe it’s enough if I just go back to my books and look forward to a short visit from Daughter #2 in a couple of weeks. Things are going well for the Indian family reunion in Goa in June. I feel bad we won’t be there, since the whole thing was our idea, but gratified that many family members there are continuing with the plan and will meet the rest of the family who’ve joined us since our last visits as a family. People tell me, and I read in the experts’ books, that during the first year after cancer treatments, it’s normal to feel uncertain and even a little depressed about the future and what comes next. In view of all the things I’ve been through during the past months which are past now, will (barring negative CT/PT scan) pass as well. I will be back, because I have a lot to tell you.

a temporary reprieve

Don’t know rightly what to call it, but both stay of execution and reprieve both came to mind yesterday after the long anticipated telephone call. It came around 3:30 p.m. I had expected to be waiting through still another agonizing night of fitful sleep, so I was sure it couldn’t be THE call I was waiting for. Possibly THE-MOST important call of my life so far.

I was on a Skype call with my daughter in New York and she had excused herself for a moment in the kitchen while I waited. The rock that had settled into my stomach on Thursday weighed ever more heavily.  So when the phone rang I grabbed the laptop and hurried with it in hand to to pick up on the second ring. If daughter came back to see me on the phone, she would figure out what was going on and could either watch me cheer or collapse. Either way I was glad she was there and I wasn’t alone. She returned to our Skype connection to see me frozen on her monitor with phone in hand. For the rest of my life I’ll remember her folded hands under her chin when she realized who I was talking to.

Funny how addicted we are to social pleasantries while we’re getting into the real reason for the call. I just wanted it over, good or bad! How banal we both sounded. Hi, how are you? I’m feeling like shit, how would you feel? Now get on with it. But both my grandmothers and mother did a great job teaching me how to act and talk like a lady. And then the words I was waiting for finally spilled out. I have some good  news; all the samples collected have been analyzed and came up clean. Things were looking good–so far.

I’m pretty sure I gasped. I hung on and repeated in my head over and over looking good so far. Had I heard right? Y’mean, I don’t have to worry anymore? It’s gonna be okay? is pretty close, I think, to my stammered reply. There were so many thoughts crowding into my head all at the same time I wasn’t sure I was even coherent. I’m sure she makes similar calls every day, and I’m so sorry that not all of them are the good kind, but by God this was good news for me, and it’s all I could think about at the moment. She went on to remind me that the next step would be to contact a surgeon and arrange to have the lump removed. It was her duty to remind me that as good as everything looked at this point, only after the lump itself was removed and examined could we be 100% sure. A sobering reminder indeed, but a necessary one.

Actually, we were a step ahead already in that direction having contacted a staff surgeon on Monday and taking the first consultation appointment available. My appointment is February 17 in the early afternoon. After that, I’ll have a definite date for the coming out party they call lumpectomy. I never thought I’d actually look forward to having surgery scheduled. I feel a little like a kid who’s been granted a heartfelt wish–after making the most uncomplicated promises of their lives. From now on I’ll eat all my broccoli and drink my milk and carry the trash out and keep my room clean . . . brush my teeth, hell I’ll even floss and do a better job with the waterpik.

I’ve talked to a number of women who have already experienced the same sort of thing I’ve been going through the past week and it’s amazing how common the experience is so I’m pretty sure most readers understand all the feelings I’m having now. As far as the new mammogram suggestions a few months back from the American Cancer Society that most women don’t need mammograms in their 40s and should get one every two years starting at age 50–I can’t say more strongly how I feel about that suggestion, than to wonder what might have happened had I decided to follow that advice. I did begin to seriously consider–even to the point of giving myself permission, based on that new information, to relax a little with self examining since I was never really sure I was doing it right anyway. It astounds me now to contemplate what my outcome might have been had I let this thing go for another year? I don’t even like to think about it.

life interferes while I’m busy making plans

I’ve always thought it would be nice to write a daily journal but for reasons unknown, I’ve never been very successful at carrying it out. If I did keep one, however, the entries for the past few rather eventful days would be a good place to begin. If I did write a journal, then, here’s what it would say:

Wednesday, February 3: It’s the day after Punxsutawne Phil, the groundhog in Pennsylvania, saw his shadow, and the weather here in Utah is feeling amazingly like a preview of spring. I woke up this morning thinking the weather would be terrible. I have an appointment mid-afternoon and we take advantage of the good driving conditions to leave early for a few errands. We arrive at the Huntsman Center a full half hour before the appointed time and ride the elevator up to have a leisurely cup of coffee in the coffee shop. Everything goes smoothly at the radiology department. Information is verified, and I have only moments to wait until I’m swept into the changing room to disrobe. I join two ladies already waiting and another one sweeps in and we glance at each other wondering, I’m sure, which of us will be called first–in order we presume. The last lady in is the first one called surprisingly. The lady who entered just before me is called, and after a few minutes it’s my turn. When I finish, the poor girl who entered around the same time I did is still waiting. She’s the most anxious because her three kids are in the waiting room with the man who brought her, presumably her husband. I wonder why she’s still waiting after I’ve finished. I presume there are protocols to be followed.

Thursday, February 4: Another supposedly storm pattern skirts around us and leaves another good day for errands before class at 1:30. We leave the house around 12:45 and return home at the end of the day around 4:30. As is his custom, Hubby checks for messages on the answering machine. Just one. Left at 1:40. For Alice. It’s from the Huntsman Center. It’s Linda at the radiology department. She’s calling about the mammogram performed yesterday. There are some irregularities that require further exploring and could I please call back as soon as possible so we can set up a time.

Oh my! What can it mean? Maybe it’s questions about insurance. They hadn’t asked to see  my Medicare card nor supplemental insurance proof. It was all on the computer. I couldn’t remember whether they’d asked for my picture ID. Unspoken questions seem to float about the air around us as both Hubby and I ponder the implications of this completed unexpected call. All I can find room for in my head is how ironic that saying about life interfering while we’re so busy making other plans. Our thoughts have been permeated the past weeks with flight schedules and itinerary for visiting India in June. Things seemed to be about to fall into place. Of course I call Linda immediately but there’s only a machine at the other end. Apparently Linda either goes home early or is otherwise occupied. I leave a message on her voice mail and hang up hoping for it to ring back soon.

By 7 or 8 o’clock, it’s clear we’ll have to get through the night without learning anymore. Maybe it really is an insurance irregularly. But probably not. It’s exactly one year and one day since my previous mammogram at the same laboratory. After awhile I decide to self-examine. There it was! I felt it almost immediately. (How had I known to begin on the left?) It felt enormous. How had I missed it in the shower? How long had it been there? When had I done my last self-exam? Three months ago when my dentist reminded me as he does everytime I see him–the time I lost my crown in the tacky candy? That would be November 19. Regardless of the last time, I’d failed to feel anything and always wondered if I know if something was there. That means it’s a helluva fast growing thing, doesn’t it? Is that a good thing or a bad thing? I feel the familiar rock forming in my stomach–the one that lets me know not all is as it should be.

Friday, February 5 a.m.: Only moments after the clock rolls over to 8:00 a.m. Hubby is on the phone to Linda. He leaves a second message on her voice machine. We sit down at our respective computers and sip our coffee waiting for the phone to ring–which it does after 15 or 20 minutes. Linda has the kind of voice every hospital administrator must be looking for when they need someone to inform their patients of possible bad news. She explains the different scenarios, and reassures me that the Huntman center has had much success with their surgical procedures in these matters. Rather than the sharp intake of breath I expected when I tell her I can feel the lump and that it feels quite large and hard, she exclaims oh that’s good news! We’ve already settled on a 2:30 afternoon appointment THAT day, and she’s pretty sure since I could show the doctor exactly where it was, he would very probably do an ultrasound right away so that he could tell me what I was facing by the time I left the center! Strangely enough, I begin to breathe and feel much better. It’s good to know what your enemy looks like, I decided, the best decisions could then follow.

Friday, p.m.: Within moments of our arrival, I’m whisked into the same changing room as the day before. This time there’s one other lady waiting. I pick up the same magazine as the day before, and leaf to the page where I left off. The technician sticks her head in to inform me she’s just going to be a few moments getting the room set up; she’ll only be a moment or two. More pictures. Which seem to hurt more now that I know about the lump. Then I’m moved to another room where the ultrasound will be done. Dr. Morgan enters and plops warm goop on my left breast the tech has cleaned with hygienic wipes, then wields the mighty wand and voila! I see and recognize the lumps on the pictures because I’ve spent some time earlier in the day learning all I can about breast tumors and such. I watch his face to see if I can glean any information at all there. He speaks finally, saying something about me probably wanting to know the truth no matter what it was! I assured him I did. In summary, it was about 3/4 inch long and about as deep, not pliable, irregular in shape, and it looked suspicious. He would try to get a needle biopsy worked into the schedule that afternoon if possible. I lie there on the table feeling shell shocked. What happened to yesterday? When did this start? Where did the sun go?

My sister was diagnosed with breast cancer when she was in her early 50s. Breast cancer. Every year I passed another birthday, I would compare my age to hers at her death. She reached 58. I’m on my way to 68 this year. My brother was 54 when his metastasized cancer claimed him. Every birthday I passed I began to feel more triumphant. There was, at times, a certain amount of survivor’s guilt, but lately I’d begun to think maybe my one surviving brother and I would beat the odds after all. It didn’t even occur to me yesterday that this mammogram was anything other than the routine I had followed since my sister was first diagnosed in the early 1980’s. A card a week later saying my mammogram results were negative. I’d begun to feel a little smug and that smugness was about to bite me in the ass. Or more specifically the breast.

The good news after the procedure, which would require a full post to describe, would be that Dr. Morgan did not observe any abnormalities around the lymph nodes, but there aren’t any guarantees. He assured me the biopsies could very well come back negative, but in view of the percentages of sampling errors, the size of the lump, its irregular shape, etc., he would advise me to get it out anyway.

So here I sit on a sunny Monday afternoon. I have seen my enemy, though I don’t yet know its strength. The test results may be available by late tomorrow, but certainly by Wednesday. We’ve made an appointment with a surgeon for the Wednesday 17th. Numerous quick consultations with health advisers led me to keep my regular infusion treatment (for rheumatoid arthritis) today, and I should be ready to face surgery in a week to 10 days, or whenever it happens. I gather that depends on what the medical reports say tomorrow or Wednesday.

In the meantime life goes on. I have no explanation for the calm I feel. I’m usually planning my funeral in prior medical emergencies, so certain I was that vengeful god from my childhood in the fundamentalist church finally got fed up with me badmouthing him now and then and decided to call my number. This time, when the situation feels more serious than anything I’ve faced before–including the hepatitis, the diverticulitis, and the debilitating days before the RA was finally diagnosed and treatment begun–I realize there’s not a damn thing I can do to change the outcome, even worry won’t keep the plane in the air.

There is one thing that surprises me. It’s that survivor’s guilt thing. I would say these things to my brother and sister if I could. I felt terrible those years you were facing your demons; helpless, yes even guilty yet happy that my life was so going so great all the while yours was fading away. It’s my turn now it looks like. I understand better today than ever. But we’re more even now; I’m not the favored one anymore. And while I hope for the best outcome, like you Sis, I’ll fight like hell as long as I can.

I hate leaving on a such a negative note, so in spite of the length of this post I will add a bit of comic relief, which is how I’ve come to think of this particular part of an otherwise negative experience: a needle (or whatever term they choose to call it) inserted in your breast tissue isn’t the most pleasant sensation even when you’ve been given some sort of local anesthetic to dull the pain. Most of the time I lay there with my left arm lifted behind my head with my eyes closed tightly as if not seeing what was going on would make it easier. Then I felt the pressure and heard the clicks that meant little snips of tissue were being incised and collected, six all together if my count was correct. Then something caused me to open my eyes. I saw Dr. Morgan leaning over me in what must have been a very awkward position for him, one hand on the gun-like contraption he was guiding into the breast, the other on the screen to guide him. Then I noticed his nostrils. Apparently he was in the last stages of a head cold, the point where the mucous seems unending. Like any anomaly, I stared at it a full minute trying to figure it out, finally realizing it was–what else can I call it?–snot. Hanging pendulously above my chest area. With every breath, I was certain it would land any moment in a splat! Every now and then he’d suck air back upwards through his nose and it would disappear for a moment, only to spring back downwards immediately it seemed. What do doctors do in a case like this, I wondered? In a surgical procedure–at least on tv–there was a nurse standing by ready to wipe perspiration and presumably snot too except it never happens. I wondered if they failed to add that to the list for the x-ray technician that stood assisting? It went on so long, I began to feel very sorry for the poor Dr. Morgan. Hubby was sitting in a chair across the small room watching the whole thing, and later we compared notes. I decided that even under the most dire of circumstances the funniest things sometimes happen for a reason. I’m convinced it is always for good reason.  At that point in the day, both Hubby and I needed–and got–a good, shared laugh!

Postscript: Ladies, if you haven’t scheduled your mammogram this year, let this be a reminder of how important it is. And if you don’t self-exam regularly, think about starting that habit tonight! It could make a difference!