Category Archives: cancer

Same Chapter…

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The Same Chapter…Different Take

This past Wednesday was just another routine oncology appointment. Into the exam room walked a very dapper White Russian. I’ve only ever seen him in his white coat, but the other day he sported a yellow v-neck sweater, a navy and white checked shirt and a yellow tie with stripes in various shades of blue, all wrapped up in a natty tweed blazer. I commented on his Soviet swag, to which he replied he had lost weight and his coats were too big. He was waiting for his order of new coats to come in, but had gotten so many compliments that he was thinking of cancelling the order.

Once the fashion discussion was over we got down to business. And he started the real conversation with, “There was a study…”

I really hate those words. They usually don’t bode well for me. Which is ridiculous because the reason I and my mother and countless other cancer survivors are healthy and/or alive is because there was a study. But the last few times I was told there was a study it meant something I had been working for, something that was at my fingertips, something I was happily looking forward to was yanked from my grasp.

Here is the opening paragraph of a press release regarding this study from the San Antonio Symposium held in December:

SAN ANTONIO — Ten years of adjuvant treatment with Tamoxifen provided women with estrogen receptor-positive breast cancer greater protection against late recurrence and death from breast cancer compared with the current standard of five years of Tamoxifen, according to the international ATLAS (Adjuvant Tamoxifen — Longer Against Shorter) study.

You can read the whole press release HERE.

Basically it says that there was a decrease in recurrence and/or death rates in the second decade (10 to 14 years) after diagnosis for women with estrogen receptor positive cancer who remained on Tamoxifen for ten years instead of five years.

The White Russian went on to tell me that his daughter is a fellow at Sloan Kettering in New York and their team determined (as is also mentioned in the press release) that this practice should extend to all adjuvant hormone therapies, i.e., Arimidex.

I’m not sure if it was my expression (I am happy to report I was not about to burst into tears, however I bet there was a “you can’t make me” look on my face) or if he really wasn’t sure this was the right course for me, but we talked about it at length. When I told him I often wondered if my issues were side effects or just a matter of my age he told me that I’m too young to have these issues. He also said that quality of life is sometimes more important than reducing a recurrence by a couple of percentage points.

This is a great example of why I am so fond of this doctor. Where I tend to downplay my discomfort and fatigue and myriad other annoyances, he justified them as real and life-altering problems that I shouldn’t be forced to deal with if I don’t have to. Well, that and when he said I was “too young”. I liked that part, too.

So we came up with a plan. I am no longer on the Arimidex and we’ll revisit this in six months. I wasn’t even disappointed that I have to go back in six months again, even though this was supposed to be my last six month appointment. It takes about three months for the Arimidex to be completely removed from the body. Hopefully I will notice a difference in the second half of these six months. If so then I will not go back on the medication. If there is no change I will resume the Arimidex for another three years.

Not entirely what I was hoping for, but I’ll take it. Now I’m just praying there will be a change. Not because I don’t want to go back on the drug – if these problems aren’t drug related then it doesn’t really matter – but because I don’t want these problems.

Once we satisfactorily concluded that whole discussion we went on with the rest of the exam. Which consisted mostly of us talking about our children and college and degrees and the like. He was very exuberant about Katie’s choice of Music Therapy for a degree and field, which I found interesting. This medical doctor – a hard science, bio-chemical type medical doctor – is all atwitter about this up and coming field. To quote him, “It’s been around for a while, but just in the past few years there has been so much literature about its benefits. It’s a really great field.”

The rest of the appointment was pretty routine, including the run through Starbucks for the obligatory White Chocolate Mocha for the ride home in rush hour traffic. I didn’t really want the drink, but there was no choice. The car automatically turns out of the cancer center’s parking lot and drives straight to the ‘bux without any concern for my own will. Really. I was glad for it, too, because it took me forever to get home. Never, ever drive from the general direction of Philadelphia at 4:00pm during the work week. Ever.

***

The second unexpected twist in this chapter came the following day when I spoke to a genetic counselor on the phone to get Katie set up for genetic testing. After a fairly lengthy conversation she told me that I was the one who needed the testing since I was the one who had the cancer. This seemed so contradictory to everything I thought I had been told, but her explanation made perfect sense. If I test negative for the BRCA gene we will know my cancer was not genetic, which means there is no reason to test anybody else. If I test positive, however, then others in my family may wish to be tested as well, i.e., Katie, Taylor, my sisters, etc.

My thought (though obviously my thoughts are not to be trusted) is that this is not a genetic cancer. My mother’s breast cancer was protein positive/ hormone negative and mine was the exact opposite. Most likely if it was a genetic thing we would have had the same tumor make up. The counselor confirmed my thought process, though it’s still not a sure thing.

So in a week and a half I will be meeting with her at 8:00 in the morning -I should have asked if I could bring coffee because, well, you know. It’s me we’re talking about and 8:00 in the morning is early when you have to be clean and presentable. – to go over an in-depth family history and all the fine details about my cancer, my mom’s cancer, etc.

***

To close out this post I want to tell you about an event I went to the night after I wrote The Next Chapter. It was a community night of prayer for some of our local families. One family in particular is a preschool and church family and they were given a devastating blow this past September. Their third child, Eli, was diagnosed with Metachromatic Leukodystrophy (MLD) – a horrific degenerative disease with no cure. MLD is genetic and it was passed on to him by his unsuspecting parents. They then had the other three children tested and while the two older boys are carriers and don’t have the disease, their preschooler, Ella, does have the disease.

As I sat there listening to their mother, Becky, I thought how petty my gripes of the previous day had been. I would take Arimidex, or chemotherapy, or anything every day of my life if it meant my children wouldn’t have to suffer. The heartaches I have been through have no comparison to what this family has been through and will continue to endure. But what faith and strength Becky has. You can read about it at her blog, Fear Not. 

***

As for this chapter, maybe I should stop trying to figure it out before I’ve finished reading it and just let God do his thing.

The Next Chapter

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The-Next-Chapter-1-470x264

I am staring at a new chapter of the cancer chronicles. It’s not a bad chapter, precisely, but it has me feeling a little uncomfortable. Or maybe restless. Or maybe I just don’t know what it is I’m feeling.

Next week I see my oncologist for my last biannual appointment. That is a great thing. I am nearly 8 years out from diagnosis and over 7 years since my first No Evidence of Disease report. That is a survivor’s dream.

There are only a few days left of my Arimidex and I won’t be refilling the prescription. Two years of Tamoxifen followed by five years of Arimidex and I’m finally done. The original plan was to be on post-chemo drugs for a total of five years, but somewhere around year four a study indicated that it was best to stay on the Arimidex for five years regardless of how long Tamoxifen had been taken. That was a huge disappointment at the time (worthy of a few tears), but the extra two years are done and I can finally stop the Arimidex.

Earlier this evening I was reading stories from women who had gotten off the Arimidex and how their lives were improved. More energy, weight loss, decreased stiffness and pain, slight reversal of some menopausal symptoms… all things that I deal with to some extent.  I want to be excited about the prospect of a better quality of life, but I’m afraid to. I am 47, after all. I’m not supposed to have as much energy, weight loss is supposed to be more difficult, stiffness and pain are just a part of growing older and menopausal symptoms are what you get when you’ve had your ovaries removed, right?

So what if I don’t notice any difference in any of those areas after I stop the medication? What if all my “symptoms” are just a result of my age?  I can tell you right now that if there is no improvement I will be just short of devastated. And incredibly furious. Again. The injustice of cancer has a way of causing righteous anger even still.

I was talking with two of my co-workers today and I told them that I don’t want to be a “new” me. I just want to be the old me. The me that I was at 39. Or more specifically, the me that I would be today if I hadn’t been derailed by the monster. Of course, I have no idea what that me would be. I just know it wouldn’t be the me I am. But maybe I’ll be much closer to that me after I stop the Arimidex. I guess time will tell.

There’s more to this chapter than this, though, and it goes beyond my own personal battle. This afternoon I started the process to get Katie genetically tested. When she was about 13 my oncologist told me that I would want her to be screened when she was 18 because some of her life choices would depend on whether or not she was genetically disposed to breast cancer. At the time 18 seemed so far away.

It hurts my heart that I’ve done this to her and Taylor. We don’t even know if this is genetic, but just the fact that Katie (and possibly Taylor) has to go through the testing is more than I think either of them should have to go through. I feel responsible and guilty and I’ve never been one to feel guilt over much of anything.  But this? I want to heap burning coals upon my head. Even though I know it’s not my fault. And yet…

I know I’ve said this time and time again over the past 7 years, but I really thought once I was through with treatment and reconstruction everything would be normal again. What I have found is that cancer has a ripple effect and I will never be completely free from it.  And sometimes that’s exhausting.

But then I remind myself that I don’t have cancer and I am healthy, quirky aging and/or side-effects aside. Even more important is that my children don’t have cancer and they are healthy. I have a husband who adores me, kids who love me, great family and friends and I am happy.

So next week I’ll go see the White Russian and he’ll say how great I’m doing and he’ll send me for a dexascan to see where my osteopenia is (that will hopefully eventually be reversed since I’m stopping the Arimidex) and then he’ll tell me that I don’t need to come back for another year (which will make me happy and sad all at the same time). And sometime soon Katie will go get tested to see if she has the BRCA gene (which I don’t think she does) and she can then make the educated choices that a young woman needs to make.

And then I can move on to the next chapter.

 

Just Another Oncology Appointment

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This coming Wednesday I’m going to see my wonderful oncologist, otherwise known as The White Russian, for my 6 month check up. I’m pretty sure I know how it will pan out. I’ll sit in the waiting room happily reading until the nurse calls my name. She and I will walk back to the nurse’s station while she blames me for the weight she’s gained because I happened to tell her about Hope’s Cookies and now she can’t ever drive by there without stopping. Then, just to be spiteful I’m sure, she’ll make ME stand on the scale (at which time I’ll tell her again that I’ll be a good 30 pounds less the next time she sees me) and drain a couple vials of blood from my arm.

Once I get to the examination room I’ll be depressed about the weight she just recorded for all of eternity and The White Russian will walk in, disturbing my lamentations, and say how great it is to see a healthy person. Then I’ll feel bad about my whining when I would take every single ounce and then some if it meant not having cancer anymore.

He will ask how my summer was and what my family did. I’ll tell him we drove to Arkansas for a week to visit friends and family and how we didn’t get to see half the people we would have liked to. Then I’ll tell him how I flew to Seattle the following week to spend some time in a beach house with four other women. We’ll also talk about the tight, tingling, almost painful pressure my left arm feels whenever I fly or even ride in the car for any length of time without any support and he’ll look for signs of lymphedema. Thankfully he won’t find any unusual swelling and I’ll be told to keep wearing the compression sleeve when I fly and hopefully we’ll dodge this particular bullet.

After that we’ll discuss the stiffness in my joints and other bodily aches and we’ll decide that since it’s not debilitating pain I’ll just remain on the Arimidex for another 15 months. This is when I’ll realize I’m only little more than a year out from my 5-year goal and that will make me happy.

Most likely The White Russian will order a bone density scan because the combination of no ovaries and the Arimidex make for early onset osteoporosis. He’ll also probably decide I should have a colonoscopy because I haven’t had one yet and colon cancer is somehow closely related to breast cancer. Not only that, but there is a history of colon cancer in my family.

We will also look at my blood work which will no doubt look good except for my white count and other immune system related values. They might be within normal limits, but I can tell you right now they’re going to be low. How do I know this? Well for one thing they’re always on the low side of normal. In the nearly four years I’ve been finished with chemo they have never gotten very far above the line. But I’ve also managed to wear myself down which always results in a thick and swollen tongue, my own personal telltale sign of a low WBC. When it’s really bad, like it was after my trip to Seattle, minor cuts and blisters won’t heal and I’ll get a funky feeling that I just can’t describe so I’m not even going to try.

Thrown in between all this clinical stuff he’ll ask about my kids. When I tell him Taylor is now a senior in high school he’ll ask about his desired major and college. He’ll also ask how Katie likes high school and what do I think about being on this end of parenting. The White Russian will tell me a little about his family and their summer and before I know it my visit will be over.

I’ll then get to Peggy’s desk and we’ll chat for a moment and schedule my next appointment for sometime around March or so. And while I’m so happy I don’t have to make weekly or even monthly visits to the oncologist anymore, I’ll be just the teensiest bit sad that I don’t get to see these people for another six months. But then I’ll stop at Starbuck’s on my way home for a Venti White Chocolate Mocha with whip (Weight Watcher’s points don’t count on oncology days) and all will be right with the world.

I do wish I hadn’t gained all this weight (which I blame all on the various treatments I’ve been through since diagnosis) and I would love it if my body would be more cooperative and less stiff and achy. I’m very conscious about the possibility of lymphedema and I’m a little angry about the whole osteoporosis thing. The thing that bothers me the most right now is the white counts and the swollen tongue. How weird is that? It’s always swollen, but it gets worse when I’m feeling bad or overly tired and it gets in the way when I’m trying to talk and I’m always biting the sides with my sharp carnivorous molars.

Nobody ever tells you about all the stuff you have to deal with AFTER treatment, even if you don’t have any more cancer. But I’ll take all of it just to get to my 5-year goal and hear those magic words, “No Evidence of Disease”. And as I’m driving home I’ll start relaxing, even though I didn’t realize just how tense I was. I always expect a good report, but somewhere in the far reaches of my mind I suppose I fear the worst.

Finally, I’ll start thinking about those I know who don’t get to hear those words that I’m sure to. The women who are dealing with a recurrence or a metastasis, those who seem to be losing their fight, and especially those we’ve had to say goodbye to. My joy at another good report will be dimmed by the sadness for those who are not as fortunate and I’ll be reminded just how horrific cancer is.

And in six months I’ll do it all again.

Cross-posted at Mothers With Cancer

I’m Still Around

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My poor mother had to call me today because I haven’t been keeping up with my blog so she didn’t know what was going on with me. Sadder words have never been typed! So I’m going to give you a bit of random…

* * *

We had Chinese food the other day and check out my fortune:

Todd was pretty smug when I read it to him because every time I complain about my weight or any other cruddy side effect of having cancer he says pretty much the same thing. This is the part where I usually say something flippant and roll my eyes, but Mothers with Cancer lost one of our own last night so I’m going to embrace these simple words and be grateful for what I have.

* * *

This upcoming Friday I am going to the spa with my friends; Kris, Laura and Sheri. Last year for each birthday we chipped in and bought a gift card for a one hour massage and we’re finally getting around to cashing in on them. It’s going to be exactly like Sex in the City, except there will be no sex going on and the spa is actually in a pretty rural, yet quaint, little town. But there will be four exceptionally beautiful and fashion savvy women. Really.

Laura made the reservations for us, but we each had to call in and give them our GC number. So I called and gave my number to the receptionist and then I took a deep breath and said, “I have a rather embarrassing question to ask you.” She was very nice as I told her I had breast reconstruction a couple of years ago and am unable to lay on my stomach. My obvious concern was that I wouldn’t be able to get the massage. After relaying the information to the massage therapist she came back and told me it wouldn’t be a problem.

Here again I would like to complain about the inconvenience of cancer, but I remember Lisa and my fortune so I won’t.

* * *

Sookie is much better. Poor, neglected dog.


* * *

Todd, on the other hand, is still sick. His fever broke a week ago and his doctor put him on a steroid dose pack to clear the chest congestion so he could breathe, but he’s still under the weather. He’s going back to the doctor on Monday and I just hope he doesn’t have pneumonia because: A) He has another business trip next week and he gets to visit his brother’s family; B) He’s tired of feeling miserable; and C) I don’t do well with sick people in my house.

* * *

We had a little taste of spring yesterday. It was delightful. First of all, I have instituted a new “below freezing” rule which says if it’s not below freezing I’m not driving the kids to the bus stop. Now the bus stop is only a half a block away and it’s not the walking in the cold weather I’m opposed to. It’s them standing there for 20 minutes in the below freezing temps that I don’t like. Let’s face it – I’ll always be a Southern California beach girl at heart. But yesterday morning it was around 38 – well above freezing.

And when I opened the back door to let Sookie out it smelled wondermus. I don’t remember this smell in California, but you Southerners know exactly what I’m talking about. The smell of early spring. It’s in my top ten favorite smells ever, maybe top five.

It was just nice to leave the house for some Homie Hang time and not have to bundle up like Randy in A Christmas Story. But guess what. We are now expected snow. Not just a little, either. Depending on who you listen to we could get up to 10 inches of snow between tomorrow night and Monday morning. Of course, I’ll believe it when I see it.

I have mixed emotions here. On one hand, we’ve had a lot of snow events this year, but no measurable snow to speak of. It would be nice to have one good sledding snow. On the other hand I’m ready for spring. I’m ready to have the windows open and take the dog for walks without freezing.

* * *

There is much more random in my life, but this is all you get today. Who knows? Maybe I’ll write more tomorrow!!

SU2C

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Todd and I watched Stand Up 2 Cancer last night and I found it emotionally draining. Cancer statistics are staggering. Mind blowing. Unreal. In the United States alone 1500 people die from the disease each day. One person each minute. And yet the means to end this insidious illness are within our grasp. For the very first time I’ve started thinking I may see the cure in my lifetime.

Before I was diagnosed I wasn’t afraid of cancer. It was something that happened to other people. I was young and healthy and there was no reason to think I would end up with it. But I did get it and a year later my mom got it. It changed the way I think and not necessarily for the better. My rose colored glasses shattered and no amount of duct tape will ever fix them.

If only we could find the cure. If we could stop cancer before it starts. If we could obliterate the disease and talk about it past tense like polio and yellow fever. Maybe then I wouldn’t have this niggle of fear in the recesses of my heart. The fear that my daughter or my son or my husband or my sisters or my father, ad infinitum, will hear those same words I heard a little over three years ago.

The program last night was a lot of things – sad, moving, inspiring, exciting. The individual stories tugged on my heart, the stories of children with cancer tore at my soul. How incredible it would be to have a cure and make these stories a thing of the past.

I want a cure. I want it now. I don’t want to have the nagging questions in the back of my mind. Will I get cancer again? Will my daughter or sisters end up with breast cancer? Has my family paid their cancer dues or will we have to ante up again? Geesh. Imagine a world where we don’t have those kinds of worries. How awesome would that be?

Just like everything else, research isn’t free. Which is the point of this particular organization. They talked about how the March of Dimes was started to fund polio research and find the cure. At that time the plea was for every person in the U.S. to send in one dime and that would be enough money for the research. And look what happened. Polio in America is a distant nightmare. This is the same thing.

Last night 100% of the donations went directly to cancer research. I’m not sure if that was just during that hour or if it continues even still, but if you’d like to make a donation you can click on the link above.

***

Some of you also read Michelle at My Semblance of Sanity. She has blogged a lot about a very special little boy named Julian Avery. Julian lost his fight with cancer in January. There was a part last night where Halle Berry, Casey Affleck, Jennifer Garner and Forrest Whitaker read a short piece about different cancer patients and their picture was shown on the screen behind them. All of a sudden there was Julian on the screen and Forrest Whitaker read a piece his mother, Mimi, had written. If it hadn’t already been personal, it sure was after that. Not that I ever knew Julian or his family, but I’d been reading about him and everything he was going through and mourned the day I learned he passed away.

As sad as pediatric cancer is – and it’s the saddest of all forms – there is hope. Hope for a cure. If you can’t pay for a cure, you can at least pray for a cure.

Crossposted at Mothers With Cancer

Hashimoto!! Gesundheit

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Today was yet another doctor’s appointment. This time it was with my new endocrinologist. Well, fairly new. This was my second appointment with her.

The reason I need an endocrinologist is because I have half a thyroid. When Todd and I had been married two years (I was 24) I saw the gynecologist for my annual checkup and he noticed a lump in my throat. (This is the part where people always say, “didn’t you tell him he was looking at the wrong end?”) He mentioned a few things it could be, but the word that stuck out was “cancer”.

Todd’s parents were in town at the time because his grandfather had just passed away. Of cancer. His grandmother was dying. Of cancer. When the doctor mentioned the possibility of cancer it was all I heard. He set me up for some tests to determine whether the growth was benign or malignant.

I drove back to my house only to find Todd and his parents were at his grandparents’ house with the rest of the family. I tried to call him, but the line was busy. So I called my mom. My parents still lived in California at the time and were visiting my sister and her family in Oregon. I called my sister’s house and talked to my nephew when he answered the phone like there was nothing wrong. But as soon as I heard my mom’s voice I broke down. I couldn’t talk.

She asked several questions to which I managed a sobbing “no” in reply. Had Betty died, did something happen to Todd, were Todd and I in a fight. Finally I took a deep breath and told her I had a growth on my thyroid and the doctor mentioned it may be cancer.

Being the good mom she is my nerves were calmed in no time. So I hung up and tried calling out to the grandparents’ house again. This time I made it through and told Todd what the doctor had said. The family was so immersed in cancer at the time that it made him physically ill.

His mother called my doctor to get more information. Poor guy. He felt horrible when he heard what all we were going through at the time and how the mention of cancer – however remote the possibility – had frazzled me.

So began the myriad of tests to determine whether it was a benign goiter or a malignancy or something else. Each test came back inconclusive which meant another test and then another. I think I had at least four different tests. The morning we were getting ready for the last of them my father-in-law called to let us know his mother had passed away. I believe it was 11 days after her husband.

It was finally decided that I needed to have the right side of my thyroid removed and a biopsy performed. Thankfully the results were negative. It was just a plain old, run of the mill goiter.

For years I didn’t have to take any medicine as the left side seemed to function just fine. Then one day while sitting at the counter at my folks’ house (they had since moved to Arkansas) my mom commented on my swollen neck. I hadn’t even noticed, but after she said that I realized I did have a bump to the left of center where my thyroid is.

My family quack doctor at that time said I’d have to have the other half removed without even running any tests and scheduled me to meet with a surgeon. Todd called my gynecologist and told him what was going on and he was not happy with my doctor. He sent me to his surgeon who ran some blood work and performed a sonogram. He decided I didn’t need surgery, I needed an endocrinologist.

So we were referred to the Nutty Professor – the best endocrinologist to ever have walked the face of the earth (though I know Radioactive Girl will disagree with me). He diagnosed me with Hashimoto’s Syndrome. My thyroid levels were all within normal limits, but my half a thyroid was working so hard to keep it that way it had become swollen. So now I take synthetic thyroid to keep my levels up without taxing the left side.

In addition to the Hashimoto’s Syndrome I also have nodules, the largest of which is 1 cm. Some of them have a bit of calcification, but they’ve been that way for the last ten years. Still, given my history and the fact that breast cancer can spread to the thyroid, the doctor and I decided it would be a good idea to have a biopsy.

Is it just me, or does the thought of somebody jabbing a long needle into my neck sound icky?

Every time I have my thyroid levels checked I wish against wish and hope against hope they will be low, giving me a great excuse for not losing weight. Never, ever, ever has my wish or hope been granted. In an effort to combat my fatigue, however, she did increase my medication up to the next dosage today. Now I have visions of having all kinds of energy, living in a perfectly clean house, losing weight and realizing my dream of looking great in my swimsuit this coming summer.

Just Hangin’ Out

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It’s Sunday afternoon and the family is at church. They went to the late service; stayed for a VBS meeting and will just end up staying for youth group. I don’t mind and am enjoying the solitude.

I flipped open my bible to wherever it would go this morning and it took me to Nehemiah. When I think of Old Testament books I like I usually come up with Psalms, Esther, Song of Solomon (I’m guessing this is where my love of romance novels came from), Jeremiah — but not Nehemiah. I think I may add it to my list.

Now before you non-religious people run away screaming for fear of a sermon, don’t worry. I don’t preach. I just found this interesting.

Nehemiah goes to Jerusalem to rebuild the great wall and all the gates after it had been destroyed 100 years earlier. Chapter three is a listing of who did what and I found it fascinating. I mean, think about it. This happened somewhere around 2500 years ago and we have a complete list of who did what to the wall.

It lists which family worked on which gate and what they did and for some reason it just really impressed me. My favorite thing about this chapter, though, is that it only mentions so and so and his sons, so and so and his sons, etc. But verse 12 says Shallum and his daughters repaired their section. GIRL POWER!! LOL

This isn’t the first or second or probably third time I’ve read Nehemiah, but it’s the first time it really caught my attention. And that’s my “Interesting Bible Facts” for the day. Or week. Possibly month. Maybe even year.

***

Yesterday Todd took me for my first outing to Target. It was nice. I made off with new jammie bottoms, a book, toenail polish and some great exercise. We walked around the perimeter once and had to stop in the garden department so I could sit for a little bit. When we got home I hit the hay and slept like a rock for about two hours. It was great!

***

When we walked past the maternity section I looked at the clothes and had the same thought I always do. If only they’d put the belly panel on the back of the jeans to accommodate my large rear. I’m thinking with the current fashions of tunics and baby dolls, etc., the shirt would come down past the comfy stretchy part anyway. I may have to look into this. It could be the next big thing. Pun intended!!

***

My recovery still continues to move along nicely. I am totally stunned at how little pain there is and how well I’m getting around. All without the aid of my adored Percocet. (I’m sure you all think I’m a prescription drug addict by now, but I promise I’m not. I haven’t had a Percocet since Friday!) Bending down to pick stuff up is a bit much and I have weight restrictions so I can’t be doing laundry or vacuuming. Darn. But I really don’t feel like I just had surgery a week ago. This one was so much easier than the reconstruction!

I am being plagued with thrush again, however. That has got to be one of the nastiest things of all times. I’m lucky in that I don’t have pain with mine, but it is aggravating. And gross. It took me a good six months or so after my last chemo treatment before it was completely gone. Or so I thought. Now it looks as though it’s back again and it’s a bugger to get rid of all the way. But seeing as how this is my last real medical issue (power of positive thinking) I should start rebuilding the immune system that’s been trying to get strong for the last year and a half. Then I’ll be able to fight off this disgusting yeast infection and I won’t have a fuzzy swollen tongue ever again. At least that’s my plan.

***

My last musing for the day is my diet. Or nutritious eating. I’m continuing on Weight Watchers and even declined offers for food while I’m recuperating because I NEED TO LOSE WEIGHT! When Katie and I were in New York City we ate dinner at the Hard Rock Cafe and they took our picture. I bought it so we’d have a picture together for our trip, but I hate it. I’m huge!

So instead of making excuses like I always do — you know the kind. I’ve just had major surgery and I deserve to eat three scoops of ice cream or That shot hurt so I think I’ll get the biggest White Chocolate Mocha with as much fat as possible to make me feel better. — I’m counting my points. I was sort of hoping the combination of ovaries, cervix and uterus would be about 10 pounds, but apparently it wasn’t. So tomorrow I’ll see if I’ve managed to lose any weight, even though my exercise has been curtailed again.

Surgery Went Swimmingly…

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…and I didn’t say anything embarrassing on drugs or off. A first for me, I’m pretty sure.

The trip to the hospital was a bit ominous in that we followed a hearse nearly all the way there. I didn’t say anything about it, but when we turned into the parking lot and the hearse went straight Todd said, “Whew!” For some reason that totally cracked me up.

Everything leading up to surgery was totally unblogworthy so I won’t bore you with the details. The operation went well, everything came out as it was supposed to, nothing looked suspicious. I spent more time in recovery than I did in surgery simply because the hospital was crowded and there wasn’t an available bed. Seems like poor planning to me, but what do I know?

I did appreciate their narcotic protocol. A steady stream through my IV AND a pump for a little extra dose when I felt the need.

It’s funny what you notice when you’re medicated. Before being taken into the operating room I had a great view of the pre-op nurse’s office. There were medical books upon medical books and in the midst of those was an InStyle Weddings coffee table book. When I was settled in my room after surgery I kept thinking of Sunsilk (hair products) commercials. That baffled me because I don’t use Sunsilk and I couldn’t imagine why those ads should be stuck in my head. It finally hit me. The white board on the wall in front of my bed had a list of care providers: Nurse, Tech, Assistant, etc. After these the name of the person on shift would be written in so we would always know who was who. There was a frame around the white board and covered the “T” in the word “Therapy”, leaving only “Herapy”. So yeah. That’s where the Sunsilk commercial came in.

Because the hospital was so crowded I ended up sharing a room with another patient. As I mentioned in the previous post, I’ve had several surgeries. I think this is the first time I ever had a roommate.

Very sadly, she was an elderly lady who suffered from vertigo, delusions, disorientation and pain in her legs and arm. She cried and moaned and called out and wept. It was very agitating and very sad. I felt so helpless. She finally fell asleep at night and I very soon followed suit, only to be shocked awake by her hollering for her mommy to help her. She was falling. “Please help me, mommy! I’m going to fall!” I hit the call button so they could come wake her up. It was so sad. She did that a couple times and then one time she woke up, crying, clearly distressed and wanting to know where she was. “You’re in the hospital, Honey. You’re okay. The nurse is coming,” I told her as I was pushing the button again.

I was totally conflicted. I felt so bad for her and wished I could do something for her, but there was nothing I could do. I did spend a lot of time praying for her. I was also a bit angry that they put me in with her. I was a surgical patient and should not have been in with such a distressing patient. On the other hand, I think there were a couple times when my voice calmed her until the nurses could get there. They told her countless times how to press the button if she needed them. I could hear her on the other side of the curtain clicking something, but the nurse light never would come on. So I spent half my time hitting my button for her. The nurses would come in and ask me what I needed and I’d just point to the curtain.

It was one of the saddest things I’ve ever seen. I suppose one benefit to it was that it forced me to take a lot more walks yesterday than I would have otherwise. Since I did so well – getting up so much and with a minimum of pain – I was given the option of staying one more night or being released after only one night. Seeing as how my one night was less than restful I opted to come home.

One of the more pleasing aspects of the stay was in the middle of the night – when things were quiet next door – I heard Brahms’ Lullaby. I was a little, um, what’s the word… oh yeah. Drugged. But I remember hearing it, smiling and thinking, Isn’t it nice that they play such sweet music so we’ll be lulled to sleep? After it stopped it started up again. So nice…

Yesterday I found out I was on the same floor as the maternity ward and every time a baby is born they play Lullaby and Goodnight. Twins had been born in the middle of the night – delivered by my very own doctor. Labor and Delivery was pretty busy yesterday as Todd and I counted at least three lullabies. And everyone would stop, smile and say, “Awwww.”

Because of the busy business of babies, I wasn’t discharged until a little after 6:00. We got home around 7:00 and I ensconced myself in Todd’s chair. Though he’s now saying it’s no longer his chair. I spilt coffee on the arm the other day and he thinks that was me christening it like a yacht. In fact, at some point in the near future you all may be treated to a guest blog – no doubt about the injustice of how I’ve weaseled my way into his chair and taken over.

I’m amazed at the little amount of pain I’ve had. As much as I like to talk about my admiration and esteem of controlled substances, I haven’t had to take a pill since this morning. I’m really stunned. Pleased, but stunned.

I am having some skin issues, however. I blistered from the tape – something I’d never done before until these past six months. The seams from my gown and now underwear seem to be causing some hefty irritations as well. Though they seem to be a little better even today so I wonder if it doesn’t have something to do with the anesthesia. I see the dermatology specialist in two weeks so if I’m still dealing with this stuff we’ll see what he recommends.

I do want to thank you all for the overwhelming comments on my last post. I should clarify that right now I’m okay with not jumping. At this moment I’m perfectly happy sitting on the side and watching. Not so much the other day, obviously.

Most of the time I’m okay with my lot. I still know all this is temporary. It’s just taking a lot longer than I thought it would. I’m pretty laid back and it usually takes a lot to ruffle my feathers. But sometimes I find myself full of frustration and sadness and all kinds of emotions. I let them out (as in the case of Sunday’s post) and then I’m good to go for a while.

I know what you’re thinking. It’s the Percocet talking. Not so. Maybe I’ll write my next post under the influence. That might be kind of fun!

Gypped

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I know I was supposed to post pictures and tell you all about the trip to New York City, but that’s going to have to wait. Tomorrow is my surgery and I feel compelled to write what’s on my mind.

Maybe I’ve just forgotten the emotions and anxiety before surgery – and I’ve had plenty to be considered a veteran. The listing of my past surgical history always takes up more room then the medical forms allow for. But for some reason I am much more agitated today than I think I’ve ever been before a surgery. Except for maybe my mastectomy while there was still a chance I didn’t have cancer.

I’m fairly certain one of the reasons for my apprehension is the skin issues I still have. My rashes seem to be fairly well under control, but a new one popped up just yesterday. And as for the blisters, I don’t know what to think. Every time I think they’re going away I find another one or two and we still don’t have a definitive diagnosis.

And all this started with my reconstruction surgery in December. So I can’t help but worry this surgery will just start something new. Then again maybe all my skin issues are strangely related to my ovaries and once they’re removed from my body my rashes and blisters will miraculously disappear. A girl can hope.

Another emotion I’m feeling right now is anger. I’m furious that I’ve been put in this position because of a stupid mass of mutant cells that decided to take up residence in my left breast. Those cells have turned the lives of myself and my family upside down. Even after all this time we’re still “suffering” the effects. Breast cancer has become an epidemic so I’m hardly alone. It makes me mad for all the women and men who have to deal with this disease.

I also feel as though I’ve been gypped. Like the little girl I was who would let most everyone have their way while I stood back and waited patiently for my turn. I’ve been waiting for my turn for two years now.

When I had surgery and then went through chemo I knew my “baggage” was temporary. The hair was going to grow back. The blood counts would come back up. My energy would be restored. I’d lose the weight I’d gained. My family would be reunited. My breast would be reconstructed.

Once the house in Arkansas sold and the kids and I made our move to Pennsylvania I thought reconstruction would be the end of my road. Before my diagnosis I liked taking a bath in fragrant bubbles and slathering delicious smelling lotion all over. I liked wearing something special for Todd and I liked what happened when I did. That was just one aspect I wanted back after the reconstruction.

Between surgery and treatment, the effort of gussying up alone was too much. Then when I was feeling better I still had the image issues. A woman can feel only so sexy when she has only one breast. That is to say not at all – at least in my case.

So I thought once the reconstruction was over I’d have a better self image. I’d lose the weight I’d gained and I’d get back my regular life. Todd and I would get back the intimacy we’d been forced to forfeit. I was looking forward to buying new clothes. Clothes that would flatter my new figure. Maybe a couple new nightgowns and a sexy, but modest sun dress to wear on our date in Hawaii.

Instead I ended up with at least three different skin issues and severe bleeding problems. Tomorrow I’ll go in and get the bleeding problems taken care of. Then I’ll have several more weeks of recovery, but I do know I’ll feel better when all is said and done.

That leaves me with the skin problems. I know that they will eventually go away as well and maybe THEN I can get back to the business of being normal. Well, my new normal. But normal nonetheless.

So I’m still the kid holding the rope while everyone else gets a turn to jump. I want to jump so badly, but I’m trying to be patient and wait my turn. Even though it seems to me a couple of the kids have had two turns already.

It sounds so silly as I read it, but that’s the truth of it. What probably sounds even sillier is that, while I hate what we’ve been through, I don’t think I would change it. I’ve seen God work in my life and the lives of my husband and children in ways I never would have imagined. And honestly, if any of this has brought even a little bit of glory to God, then it’s worth it. When I put it that way, it all doesn’t seem so very bad.

I’ll be back in a few days to tell you surgery went swimmingly and I didn’t say anything embarrassing while on drugs. Or off drugs. I hope it won’t be a lie.

Dreams and a White Russian

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Last night I dreamt Will Farrell was dressed up as Elton John at a costume party and when I showed up without a costume I said I was Kiki Dee so I wouldn’t get in trouble. Unfortunately Will Farrell heard me and said I had to come sing “Don’t Go Breaking My Heart” with him. I agreed, but kept finding things I had to do first to avoid getting on the stage in front of all the people. Thankfully I woke up before I had to sing.

Why? This dream is more insane than the Oprah dream. Or at least as insane. Zeek – would you like to interpret this one??

****

I had my regular checkup with the White Russian today. It was nice to go in for something other than a problem. Their computers were down and it had the entire office in turmoil. I usually go straight to an exam room, but today I had to go back to the chemo room. It’s the first time I’ve been to the chemo room at this oncologist’s office and it gave me a moment’s pause.

I don’t know how well I can explain this, but I’ll give it the old college try. It’s been my experience that oncology doctors and technicians and nurses are among the nicest people on the planet. When I was going through chemotherapy I had to go in to the office every week for blood work and received chemo every three weeks. While I wasn’t thrilled to have several gallons of what was comparable to fertilizer pumped through my veins, I did enjoy the people there. They were cheerful and compassionate and a fun group. Today I remembered just how much I enjoyed them and it made me a little melancholy.

But I got over it quick. I was given a great report and don’t have to show up for another three months. My blood counts were all great. Both my rashes and blisters are clearing and I’m starting to feel almost normal again. I think, anyway. I’m not sure. It’s been so long since I’ve felt normal I could be far from it. But whatever. I feel way better than I have for a long time.

Father’s Day was the day we were to leave for Hawaii. Instead we’ll be in the Poconos. Tomorrow we’re taking the trailer up to the mountains for a much needed family get away. Even though I’m feeling much better and my skin seems to be clearing up, I’m glad we postponed Hawaii. I still don’t know how my skin is going to react to suntan lotion, sunshine and bug spray. Guess we’ll find out this weekend.

After the last six months we’ve had we’re all looking forward to this weekend. We need some time away from phones and T.V.s (though we have a small one – lol) and just connect as a family. I’m planning on getting a book or two read, also.

This will probably be my last post until next week. At that time I’ll have glorious pictures to share. Or at least a story or two. And I apologize for not being a very good bloggerfriend. I sort of freak out when things don’t go according to my “schedule” and nothing’s gone according to my schedule these last two weeks. So I’ve been to visit all of you, but I haven’t been leaving comments because I’ve been too frazzled. I’m sure you’ll be sorry when I come back from camping all refreshed and revived and have lots to say to your posts.