Confusion is a state of grace

according to a friend. My visit to the oncologist was not on Monday but rather today. The end result was the same however, no more chemotherapy. I almost felt guilty as I sat in the waiting room, watching the poor souls who would receive chemo today as I went skipping out the door. But not guilty enough to stay.

My oncologist told me that she firmly believed that 'someone is trying to tell us something' with regards to continuing treatment. With the reactions I'd already had the risk was now far outweighing the benefit of further treatment and basically I should quit while I was ahead. Seemed good enough to me.

So now on to radiation oncology next week to formulate a plan. And then back to work. Starting the week of 3/8 I will be back at the desk on the med/surg unit, a place I never thought I would miss so much. I have so very much to be grateful for as I could see in the eyes of the waiting room patients this morning.

Tomorrow, tomorrow, I love you tomorrow

you always a day away!

So tomorrow is my appointment with the oncologist, the day I tell her that chemo is finished and that it's time to come up with Plan B. At my appointment with the NP last week there seemed to be great confusion about what was happening and when. Hopefully those issues will be resolved tomorrow so that I can plan the rest of treatment. Some friends are encouraging me to go back to work during the down time between chemo and radiation, others are saying to take the time to relax. Another dilemna to consider.

And that is why I shall wait until tomorrow!

Birthday Eve

Tomorrow is my birthday. Usually the day goes by with a few phone calls, some cards and little else. I take the day off from work and enjoy my time at home. This year I am home because of my breast cancer diagnosis. I'm recovering from chemo therapy and some time soon will begin radiation. Yes, somehow my birthday celebration has taken on a new meaning. I want to scream, Carol 2, Cancer 0. I beat cancer to the punch two times. And it feels good.

Reflecting on the year just passed I know the highs have far surpassed the lows. I've been able to continue work in my little cottage, making a great room out of three little rooms, new siding, new windows, lots of new plants, flowers and a white birch tree. I even have new window boxes handmade by my brother. I look around and am happy with what I see.

Work has been busy which I always count as job security. I have a new boss with whom I enjoy working. The hospital is dedicating this year's ACS Relay For Life to me, an honour I wish I didn't qualify for, yet an honour nonetheless. My knitting friends have deluged me with chemo caps, hand knit with love and soft yarns, each reflecting the personality of it's knitter. The caps are a treasure I will never part with. My friends and family have rallied around me offering their love and support. It has been an amazingly humbling feeling.

Now as I look out onto my 60th year I wonder what the year will bring. A cure for cancer. World peace. A more stable economic environment. Or perhaps, good health. Perhaps that should be my sole wish ... good health. Good bye 58 and look out 59! I'm coming your way.

The Experts

Today was the day to confront those who have up until now only confounded me. A week ago today I had my second round of chemotherapy. I literally put my life in the hands of a medical team for which I had the greatest respect. Note I said had. After today's visit I am just plain sad. Sad that I deferred to the experts on my care. Yet at the same time learned. Because it will never, ever happen to me again.

Suppose one day you, the medical professional, discover a lump in your breast. First thing you do is call your surgeon friend. She rises to the challenge, takes you lovingly under her wing and guides you through a very difficult time. For her you have the greatest amount of love and respect. You are grateful to call her friend.

Surgeon friend makes a recommendation regarding follow-up with an oncologist. You consider her advice and although her choice may be "a true genius" your personalities clash. Instead you choose a highly recommended oncologist with whom you have an established rapport and who enjoys an excellent reputation. However know this, it might not be quite that easy. You might want to look beyond the smoke and mirrors to see just who it is holding up the magic curtain. The wizard is only as good as his/her handlers. Over the past two weeks I have learned this lesson the hard way. Hopefully sharing my experience will keep you from making the same errors.

Gosh I wish I hadn't gone and done that!

Simple message today.

If the oncologist wants to stop one med and start another in the same day pull a Nancy Reagan on her and just say no.

If the new drug causes worse side effects than the one you were already taking, and that one was not so good to you, just say no.

If you wake up in the morning and feel rather well and think "why in hell would I need those anti-nausea meds", don't fight city hall. Don't argue with yourself. Just take them.

BBFN.

A Decision Has Been Made

I'm not sure why the big decisions in life are left to those who can not think straight at the time. After having two serious reactions to one of the chemo agents on Monday my oncologist presented me with treatment options, none of which I could fully wrap my arms around. The numbers, the percentages, the what-ifs and why-nots, all too much to think about at the time.

Now as the days have gone by and I've had time to reflect I realize that I am truly lucky. I am not fighting for my life but rather for the decreased risk of having another cancer sometime in the future. And I do believe my body is trying to tell me something ... something along the lines of ......

STOP!!

So when I see the oncologist on next Monday I am going to bail. She had previously assured me that the increased risk of cancer was all but nil if I stopped the chemo after these two treatments and by gum I'm going to believe her. I'll take a few weeks off, start radiation and move on. No surgery for a port a cath, no nuclear cardiac function tests, nothing but rest and taking care of me. My most important patient. I think I might have been afraid that not going forward would indicate a lack of strength and conviction. Now I know it just makes sense.

Yesterday, not so much

Another day, another round of chemo.

Yesterday was round two of chemo. As I'd had a reaction to the taxotere the first time the oncologist decided that I'd do well with a double dose of decadron before I started the meds. She'd only seen one other reaction to taxotere and that premedication had served the patient well. So we tried. And failed. Miserably. Without belaboring the point I suffered from a very severe reaction to the med and it was decided that I must indeed have an allergy. So what now?

The doctor pointed out that I'd had two of the four rounds of chemo and maybe I would just want to quit now and go straight to radiation. After all with radiation the chance of recurrance was reduced to 7%, with the taxotere 3% but if I were to continue the new med, adriamycin would only reduce the rate of recurrance to 4 - 5% and was that worth the side effects. That's a lot of numbers and a lot of questions for someone with a foggy brain. With input from my sister I decided to carry on. I have only added one more appointment to my regimen, I was already bald, I had good insurance now and could go out of work on Family Leave of Absence (thank you Bill Clinton) and if I stopped now I could never change my mind and go back. However if I went forward and decided that the side effects were not worth the extra 2 % decline in my recurrance rate I could quit.

I came out of the office feeling confident in my decision. I explained the situation to friends and family and all agreed that it made sense. Until my life long friend came by to visit today and said she thought I should stop. After all the breast cancer was gone. Surgically removed. The treatments now were to give me the best possible shot at not having a metastasis within the next ten years. How could we know what would happen? She strongly felt that the risk/benefit ratio was not in my favor. Her mother had not had chemo post lumpectomy and had done fine. Others had also. Now my mind was in a tail spin. Was I going through all of this for the drama or for the peace of mind?

Late this afternoon I spoke with another friend and came to realize I could never live with myself if I stopped now and something happened. That every time something happened, anything happened I would be wondering if only ...

So I carry on...

Saving Private Ryan

Now you know my last name. When the movie was made many years ago I became "Private Ryan" at work, when I'm not referred to as Grandma Ryan. Both are titles which have become synonymous with me.

Late yesterday afternoon I received an e-mail from a co-worker wishing me luck with today's chemo session. And oh, by the way we are going to form a Relay For Life Team on the med/surg unit for the American Cancer Society this spring. And we are naming the team in your honor. The team will be called "Saving Private Ryan". I am honored and humbled and so very excited.

Apparently having cancer is a lot like making a shocking choice of marriage partners...

people feel the need to offer their support in any way they can and they send gifts.

It's an odd thing having cancer. It kinda follows you around all day, every day but you can't waste your time turning around to see if it's still there. I gather that when it's finally gone you'll know. Someone will ask how long since you were diagnosed and you'll find yourself saying "five years". And you'll realize that you've passed the milestone. It's over. You survived. But in the meanwhile you still have to deal with some interesting situations.

Yesterday at work I was sitting at the nurses station sporting a chemo cap when one of my co-workers said, "I like your hat. It's cute. Did you knit it yourself." "Why yes I did." "Well I like it." "Thank you very much." And off she goes down the hall. Now really folks can you not tell by looking that a person is bald under a cap that hugs their head? That the merino confection they are sporting is covering a shiny dome? Apparently not all of us can. A few minutes later several RNs are gathered at the desk, including the "cute hat" nurse. A second RN is telling of her cancer experience and how I now look like she did. "Cute hat" nurse let's say she was confused. Because I am of Irish/Ukrainian descent and the person speaking is Thai. First nurse looks confusedly at second nurse, trying so hard to put the pieces together it hurt me. And then the ah ha moment arrives. She turns to me and says, "You have cancer?" And I say, "Why else would I be bald?" And yes, she says, "you're bald?" and I immediately feel bad for her patients. I hope they can all bring the obvious to light or they may go wanting this shift.

Calm before the storm

It is the end of week three post my first chemo session. And I feel rather well. I am driving, cooking and (sort of) cleaning and knitting up a storm. Since my hair loss I've knit 4 chemo caps and my shawl is coming along nicely. The dogs and I get to spend time outdoors playing catch until we are all tired. Things are good. So where is this all leading one might ask. Tomorrow officially begins session two. And I do not want to start this all over again.

The first time I received chemo I was rather excited. Finally we were doing something. After waiting for a diagnosis and then analysis of the tumor and then a date to begin, the wheels were in motion. I remember driving to the Dyson Center thinking that I could hardly wait to have the experience, to get going.

Now I know what to expect. I will be receiving even more steroids before I begin the treatments so that I don't have another reaction to the Taxatol. During the next few weeks I'll feel even more tired, I'll be nauseated again. I'll be weak, my bones and muscles will ache and I won't be able to spend much time with my dogs. It's gonna suck. Emotionally I really have no need to repeat this process.

My first visit post chemo at the oncologist's office I met with the NP. Naively I noted that at least the next time this whole post chemo thing should go better as now my body would build a tolerance to the medications. Marcie just shook her head 'no' and said, "It will be worse. Chemo is accumulative as are the side effects." Oh boy.

So I have all of my extra fluids and hard candy ready. My anti-emetics, pain meds, the house will be clean and the laundry finished. As I wait to see what happens next.

Hair .... it's vastly over rated.

I anticipated that one of the major traumas of my diagnosis was going to be the loss of my hair. People had written about their own hair falling out in clumps, waking up to find it all over their pillows or tied in a pony tail at their side. In order to avoid all of this drama I decided to beat hair loss to the punch. Several weeks ago, right before I started chemo, I had my hair cut short. And as the weeks went on it did start to thin out, little clumps were missing and I could pull out clumps as an amusing sort of parlor game. So on Monday I decided to shave my head. I stopped by work to borrow a pair of clippers, fully intending to cut my hair at home that evening. Instead I was met by a group of fellow nurses, one of whom volunteered to do the deed for me. So into one of the side nursing stations we disappeared with clippers in hand. Within minutes I was bald.

My curiosity ran high as I walked into the bathroom to see how I'd fared. Oddly enough I decided I looked pretty darned good. Rather like my father. As the week has progressed I find that being bald is rather freeing. A shower is over so much more quickly. I don't have to worry about the colour of my roots any more. So what if I forget to buy shampoo. No need to worry if my hair doesn't style correctly as I'm blowing it dry. Why I even cut my towel consumption by half. Being bald is cool ... or rather cold as one does have to wear a hat or covering of some sort to keep one's body heat in.

So far the only drama/trauma I've encountered is from fellow hospital staffers who apparently didn't realize that I have cancer. I thought one of them would walk into a wall trying to stare/not stare at me the other day, trying to figure out what was going on. And so I quickly disarmed him by stopping in the hall and telling him soto voce "It's ok. I know I'm bald."

And I like it.

Telling the family

I was always one of those kids who didn't want to disappoint anyone. I kept out of trouble, got good grades and pretty much accomplished everything I set out to do. Now I was faced with a doozy of a choice, what to tell who and when.

Early last fall my sister had a blood clot which left her hospitalized for several days. My elderly parents and her husband spent many hours at her bedside, concerned for her health. As she recovered my father told us that the squamous cell carcinoma which he'd had removed from his face numerous times over the years had metastisized into his lymph system. He faced months of radiation after having a radical neck dissection to eliminate some 54 nodes. This really seemed to me to be the limit of what my parents could handle. And now this.

So I made the emotional decision to protect them from what was happening. I would tell them after the holidays so they could enjoy that time without adding anything extra to their already full plate. The plan was for my father to start radiation in January. By then I would know just what the plan was for my treatment and I would tell my parents then. Of course my siblings and my children knew. That seemed enough to deal with at the time.

Then one day while my brother, sister and myself were working on house renovations my siblings started in, telling me I really had to let my parents know sooner than later. I so dreaded that phone call. All of the questions and concerns. I told them I'd take their advice under advisement and we all seemed to be at peace with that idea. Until the phone call from my sister Mary later that evening.

I picked up the phone, wondering why she was calling when she'd only left my house hours before. Had I thought about it I would have known immediately. "Hey, how are you doing?" "Ok.." "Well I just got off the phone with mom and dad..." "And you told them, right?" "Pretty much, yes. They're fine. Just give them a call." And I did.

My parents handled the news much better than I had expected. No drama, no questions. Perhaps they had saved that for Mary's phone call. But at least now everyone knew and we could move on. 2010 was going to be a big year in our family. A time when we would all start to heal.

Faking It

Most days I feel as though I'm faking it. Really, how can I count myself amongst the fighting women warriors and breast cancer survivors? My cancer is only a stage 1. Why I have a much better chance of dying after having been hit by a train than from this cancer. I don't have to go weekly for treatments. My chemo regimen is stronger, lasts longer than some so I'm only required to have myself poisoned every three weeks. I've been able to work, although shorter hours. Why until today I had hair. How is it I can claim to have breast cancer, the same breast cancer which claims too many after a valiant fight if I don't have to fight valiantly?

Then I realize I'm not faking it, I'm hiding from it. I'm so busy pretending that this whole thing isn't happening that I won't allow myself the time to delve into what living with a breast cancer diagnosis means. I'm too busy reassuring everyone it's all gonna be okay, don't worry. The last thing I want is my family and friends to worry.

It's difficult to stradle the line between wallowing in the diagnosis and accepting it. So I have packaged it neatly away and go out the door every morning with a smile on my face wondering when acceptance is finally going to happen, when I'm going to cry and when I'm going to stop faking it.

PS this week's labs are wonderful. WBC's are 5.4 up from 4.6 last week. Still within normal range. Yeah leukocytes!

Full speed ahead

So between Monday 0700, sneaking into the hospital to have a biopsy because my surgeon was desperate to protect my privacy and Wednesday at 0800 I ricocheted between diagnosis and surgery. Within a week I knew that my cancer had a name ... invasive ductal carcinoma (IDC) and a stage (which is somewhat different from having a stage name). I had just donated my Stage 1 IDC breast tumor to the diagnostic community in California for further analysis. Didn't seem quite fair that I couldn't go with it, the cold weather of December having set in with a vengence in the Northeast. Now all that was left to do was "enjoy Christmas" and "try not to think about it". Ok ... what I try not to think about is the fact that I'm overweight. Don't think I'm gonna do so well with ignoring that big elephant in the room.

Some two weeks later I stooped to playing emotional blackmail with Carlos in the California lab to have the results of the recurrence rate faxed to my surgeon. After patiently waiting through a holiday weekend I awaited the promised results of the tumor analysis on Monday. Not so much. But certainly by tomorrow, said the doctor's receptionist. "We expect the results Tuesday." Tuesday afternoon again yielded no results. It was at that point that the patient and Carlos collided. After explaining my plight Carlos informed me that the results would be ready in the morning, which of course is the afternoon on my side of the country. As the results were to be released to an MD in NYS an MD in California had to review the results and confirm them before the lab could fax any paperwork.

Cue the music. "I'm not just a tumor out there in California Carlos. I'm a human being." God only knows where that line came from but it worked. Carlos accepted my pleading as his challenge and promised he would do all he could to facilitate the release of the analysis that afternoon. And he did. It was because of Carlos I now knew that I had an intermediate risk of recurrence and would require both chemotherapy and radiation.

Be careful what you ask for ....

Oh yeah, the knitting stuff

So back at the ranch, while all of this is going on I am sitting smug in the knowledge that at least my Christmas knitting will be done on time this year. How could I have known? Because I was knitting one pair of mittens for my clerk at work and a sweater vest for my sister for her Christmas/birthday. I mean really, how hard could this be. I'd started the vest back in October having purchased the yarn at Seaport Yarns in Portland, Me. The back was finished, the front was darn near close to being done, just had to finish from the v-neck up. And mittens, hell I was gonna knit them flat and then seam them. No struggling with dpn's for me. Just whip those mittens out in a weekend and be done with it.

Ok, so can you see where this is going to go? Smugness just doesn't suit me. I kept thinking, "well I'm almost finished with the vest" so hello pick it up at some point and finish it. And mittens, c'mon. December is now rapidly approaching and I'm still not seeing the urgency of picking up needles to knit for anyone but moi! Poor, poor moi! I had a little case of cancer. Didn't I deserve to knit for myself?

Two weeks before Christmas I dusted off the vest and finished the front. Then I put it down because now all I had to do was the ribbing at the neckline and arm holes ... oh yeah and sew it together but how long could that take? Mittens, smittens.

One week before Christmas and it suddently occurs to me, hmm? Perhaps I should wrap those gifts. Nah, I'll wait because I really hate to wrap. And besides I won't be seeing the grandbabes until after the holidays. I should knit. Out comes the vest. And after one day of sewing it's all but finished! Yeah me. I'll put that aside and start those mittens.

Have you ever knit mittens flat and sewn them together? I have and it usually works well. I picked up needles one weekend knit along, happy as can be, proud of myself for not having to use dpn's and not smart enough to measure them for length. Somehow it was only after finishing the darn things that I noted I had ended up with mittens whose thumb hole was just a tad too close to the tops of the mittens. And when sewn together and after I had knitted the thumbs did I notice that they just were not gonna fit. Unless perhaps you had webbed hands like a duck....or a frog. Ribbit! that's what happened to the mittens. They were frogged and still remain unfinished.

The vest, well...I knit the ribbing on Christmas eve never even thinking that I might want to choose a smaller needle to do same. The ribbing came out wavy, a very feminine wavy, sort of like the edge of a lasagne noodle. Not so great because my sister is not a very feminine wavy kind of woman. On Christmas morning I gave my sister her vest without ribbing and promised to finish it asap. And I did. I still wasn't happy with the ribbing and wanted to frog-it once again. However Mary would hear none of it. She was afraid she'd never get a chance to wear her vest. So she took it home with her one afternoon. And has worn it several times since.

The grandkids gifts did get wrapped, the night before I headed North to see them for the holidays. I recognize that this means I should probably start my holiday knitting in July like Luna and I should wrap gifts as I buy them. But I'm also thinking life might just be too short to plan that far ahead.

And so it came to pass

Wednesday morning before Thanksgiving I went to work and called my faithful surgeon friend Zoe. I told her my concerns and she went into overdrive ordering tests and scans and blood work and ultrasounds all in the same day."Geez Louise", I thought. Good thing nothing is gonna come of this because Zoe's energy would wear me out before diagnosis time. Yes I was convinced that all would be well because in our family there was no history of breast cancer. Oh we had our cancers all right. Colon on the paternal side (but thankfully not the pater himself) and skin cancer. Matter of fact that was where father was presently excelling as he had skin cancer with mets. Just diagnosed, just surged. And the family didn't need any more drama. I was kind of figuring that the colon being in a whole separate part of the body and on the inside to boot there'd be no chance of my Grandmother Anastasia's cancer being related to my breast lump. A lump, by the way, which I could not feel the next morning. And darned if I wasn't correct. No corealtion at all. Not that that ended up doing me any good.

So testing complete the world shut down for the Thanksgiving holiday. I had survived the urge to clock the radiologist who'd come into the room after reading the mammograms and ultrasound that Wednesday afternoon to tell me, in all freaking seriousness .... "I found a lump." Well no idiot you didn't find a lump. Matter of fact it was me. I found it. It's mine. So there. Men.

Thursday a.m. I tottled up to the hospital and signed on to the website which posts results of patient exams. I looked mine up knowing that it would say "1 cm. benign appearing nodule at 12 o'clock in the left breast. Clinical corealtion not necessary." However someone switched reports. Mine read, "1 cm. nodule highly suspicous for malignancy at 12 o'clock in the left breast. Clinical corealtion advised.".

And time stood still. Shit. Are you kidding me?

Knitting My Way Through Chemo

aka, I have an affected side.

As a health care provider I am wise to the ways of the cancer patient. No IVs, blood pressures or blood draws from the "affected side". Which is to say if the patient has breast cancer don't use the side of the body where the cancer was removed. Easy enough I always thought. Until I caught a little case of cancer myself. Suddenly I realized that I was affected. Not just a side but the whole me. Life was no longer going to be the same. I was gonna have to try and figure this whole cancer thing out, how I was going to approach the post-operative phase, the scars, the weirdness of do I or don't I now have breast cancer and best of all chemotherapy.

All of these years I've been the smug one. I got my original cancer at a relatively young age and it was totally curable. Ha, ha! Thyroid cancer was a relative breeze. Have the thyroid out, drink some nuclear waste to get rid of any lingering cells and then milk the diagnosis to death. Yes, that's right. I've had cancer. I'm like one of you! And I was smart enough to pick the good cancer. Brilliant I tell you. I had picked the good one.

So imagine my surprise one evening some 10 years later when I'm climbing out of the shower drying off and I feel a lump. Hmm? A lump? C'mon, what's this about? Well my friend this is about the most exciting challenge life has presented me yet. An adventure I'm about to share.