Too Moody For This

June 4, 2011

Last night my 12-year-old daughter got in trouble with her father and he just barely raised his voice at her.  Her response to this was to look at him and say, do not yell at me.  I wasn’t sure if my husband’s head was going to explode or not…it was touch and go there for a while.  My reaction, on the other hand, was to cry.  This has been happening more and more often lately.  I went to the grocery store and my husband told me I bought the wrong kind of cheese – I could feel my chin quivering and the tears forming in my eyes.

I’m turning 42 this month.  I know what menopause feels like, because I had the honor of going through it when I went through chemo.  Not only is it my birthday this month, but it’s also my 2 year cancer free anniversary – which means it’s been two years since I’ve had a hot flash or a major mood swing.  So, ok, I’m going through menopause, right?  Am I just starting menopause at the ripe old age of 42?  Is this a carry over from chemo?  Is it cancer?  Is it cancer? Is it cancer?  I get so tired of thinking that. 

 I see my oncologist every 4 months now.  It’s been 5 months since my last appointment.  Putting off going to the doctor doesn’t change what the outcome is going to be.  Intellectually I know this.  When they found the lump in my breast, they told me to trust them, because it was probably nothing.  Boy, were they wrong that time.  If I hear that again this time, I think my head will explode.

Who Knew?

October 29, 2008

My church has recently launched a Women’s Website and Blog and I’ve been thrilled to be a part of it.  I’ve written a few posts specifically for Breast Cancer Awareness month and this one seemed appropriate for repeating.  It’s not all specific to breast cancer, however.  A lot of the issues I talk about deal with chemotherapy in general.  I’m interested to know what things the rest of you “learned” about cancer and treatment.

Before I had kids I knew the proper way to raise perfect children.  I would do this and wouldn’t do that — it was so simple.  Then I became a parent and found out just how much I didn’t know.  It was the same way with cancer.  I thought I would have the surgery, go through chemo, grow my hair back, have reconstruction and then my life would be the same as it had been before.  How wrong I was.

My misconceptions about chemotherapy was my first schooling.  The comments I made to Todd about the silver lining to the diagnosis were nearly all blown to bits.

Chemotherapy as a weight loss aid:  I didn’t lose any weight.  In fact I gained 30 pounds over the six months of treatment.  I blame my oncologist and the chemo nurses for telling me to eat an ice cream sundae every day.  Oh, all right.  What they said was if the only thing I felt I could eat and keep down was an ice cream sundae then eat an ice cream sundae every day because it was better than not eating anything at all.

Chemo didn’t make me sick.  I had a few days of feeling icky after treatment, like I’d eaten something to sour my stomach; however, I wasn’t actually nauseous.  My food consumption didn’t change much, but I was suddenly living a sedentary life.  Another factor was the large amounts of steroids which accompanied each infusion and caused water retention and munchies for a couple days every three weeks. 

Loss of unwanted body hair:  This one was pretty weird.  I lost all the hair from the most personal of my parts to the top of my head.  My legs, however, didn’t cooperate.   They were as furry as ever.  To add insult to injury I wasn’t even allowed to shave.  A simple little nick could turn into a horrible infection due to my low white blood cell counts.  Thank the Lord above for the invention of Veet!

A lot of time to read:  Before all this I averaged a few books a week, about twelve books a month.  But my purchases were not in direct proportion to my reading and the bookshelves were bulging.  If my family hadn’t expected certain things from me – dinner, clean clothes, attention, etc., – I would have read a lot more.  So the thought of six months of guilt-free reading was enough to make me slightly giddy.  But it turned out to be nothing more than a thought.  The chemo made focusing nearly impossible so I read only a few books the whole time.  What’s just as sad, if not more so, is that I still haven’t gotten up to speed and my bookshelves continue to bulge.

A set of new, improved, perky boobs:  This isn’t related to chemotherapy, but my comment was blurted out without any understanding of the process.  Many women choose not to have reconstruction, but the majority of mastectomy patients, especially among younger women, do decide on some form.  There are a lot of emotions that accompany the loss of a breast and reconstruction is a way for women to feel better about their bodies.  But the plain truth is, even if reconstruction makes a woman look normal, it doesn’t feel normal.  Whether it’s implants or some type of flap procedure, the breast tissue, including nerves, is removed.  There’s little to no sensitivity and sometimes it feels like a foreign appendage on your chest.  So the boobs are new, they’re not necessarily improved and because I had a flap procedure instead of implants they’re really not all that perky.  Frankly I’d rather have the old, small, slightly saggy boobs any day.

Then there’s all the weird stuff you never know about until you or someone close to you goes through treatment.

Chemopause:  Chemotherapy shuts down the ovaries in premenopausal women causing chemically-induced menopause.  While not all women experience hot flashes and night sweats during menopause, each chemopauser I’ve ever known suffered from spontaneous combustion on a regular basis.  My family always knew when I was about to incinerate by the way I would whip off my bandana and fan my bald head.  More often than not I’d end up with two kids blowing on my noggin in an effort to cool me off.

Chemo Brain:  For a very long time this was considered the imagination of chemotherapy patients.  There have been many studies done, however, and oncologists now take it seriously.  Lack of concentration and forgetfulness are the results and it lasts much longer than treatment.  Five years used to be the magic oncological number, but now they’re finding it lasts far beyond that for some patients.  I deal with it and as frustrating as it can be at times, I can cover a multitude of forgetful sins by claiming chemo brain.

Lymphedema:  In breast cancer patients this is the result of either 1) having lymph nodes removed during lumpectomy or mastectomy to check for the spread of cancer; and/or 2) damage to the lymph system from radiation.  It causes painful and sometimes debilitating swelling of the surgical arm and there is no cure for it, only physical therapy to help reduce it.  It can occur weeks, months or even years after surgery and there is no guarantee it won’t eventually happen.  I’m thankful not to have lymphedema at this time and pray I never do.  Not all oncologists agree with this, but my doctor advises against any trauma to my left arm including shaving.  Again, praises for the invention of Veet.

It’s for this very reason that I decided to see my tattoo artist for laser hair removal of my underarms.  If you’re thinking Miami Ink, think again.  My “tattoo artist” is the medical aesthetician at my plastic surgeon’s office who tattooed my nipples after reconstruction.  Calling her a tattoo artist is misleading because all she knows how to do is circles.  I asked about flowers or Celtic knots, but she doesn’t have either in her repertoire.  As it happens, she also does laser hair removal so I decided to have that done.  It was well worth the searing pain and the money, though I have to go back for a touch up.  (Note to self: Remember the leather strip and shot of whiskey.)

Osteoporosis:  If a premenopausal woman’s cancer is caused by estrogen then it’s in that woman’s best interest to shut off the production of the hormone.  Oftentimes chemotherapy is enough to shrivel the ovaries until they die, but sometimes an oophorectomy – the surgical removal of the ovaries and a fun word to say – is required.  In my case I had to have the surgery which threw me into instant menopause.  It was like winning the lottery because I went through the symptoms of menopause three times in two years.  Not every woman is so lucky.  But yanking those puppies and cutting off the major portion of estrogen causes the deterioration of bone.  As my oncologist put it, it’s not a matter of IF I’ll get osteoporosis; it’s a matter of WHEN.  Thankfully there is a lot in the way of nutrition and exercise that can put it off.

Arthritis/Joint Pain/Stiffness:  Some chemotherapies and post-chemotherapy drugs can cause arthritic changes, joint pain and stiffness.  It’s kind of a catch 22.  The best thing for these conditions is exercise, but exercise can be difficult when you’re suffering from these conditions.  I try to walk at least 30 minutes every day yet I still hobble and wince every time I get up after sitting for 10 minutes or more.  I’m hopeful this will go away after I finish my post-chemo drug in two years, two months and a week or so.

Sexual Dysfunction:  I hate to bring this one up.  It’s just so personal, but it’s a very real fact.  There are a lucky few who never deal with this issue.  Then there are the rest of us.  This subject alone could be a whole series of posts but I’ll try to condense it into one paragraph.  There is the emotional side – self-image, fear of the disease, depression, fear of rejection.  Then there is the physical side, especially when the estrogen has been staunched.  Loss of libido, vaginal dryness, pain or discomfort.  Not every woman deals with every aspect but they are each valid problems.  It’s a hard knock when you go from a healthy sex life to no sex life seemingly overnight.  Sadly marriages have failed due to this issue.

There are also things that have no explanation, but are most likely caused by the chemical changes from chemotherapy. 

For several months after my reconstruction I had inexplicable skin problems that never were diagnosed even though I had several biopsies and saw a specialist.  I still have small breakouts which resemble hives, but only a few at a time as opposed to nearly 100 at one point last year.  The only thing my oncologist, gynecologist, dermatologist and specialist agreed on – it was most likely a latent result of the chemotherapy.

With each treatment of my second chemotherapy round I had a terrible case of thrush brought on by my dangerously low white blood count.  I would take Diflucan – typically prescribed for yeast infections – and swish and swallow a horrible tasting liquid containing nystatin and lidocaine and all would be well until the next treatment.  Ever since then my tongue has been continually swollen and I’m very susceptible to thrush.  When I haven’t gotten enough rest or I let myself get stressed my tongue, gums and interior cheeks swell up even further.  There’s no known reason for it so I just have to deal with it and hope it will eventually go away.

I didn’t know any of this when I started this unwelcomed journey.  Of course everybody is different and while some may experience low white blood counts, which suppress the immune system, others experience low red counts, which cause extreme fatigue.  Some patients may be ill through chemotherapy and lose dangerous amounts of weight while others, such as me, never get sick and actually gain weight.  You never know until you go through treatment how you will react.

The not knowing to me was always the worst part.  Not knowing what stage or grade cancer I had, not knowing my prognosis, not knowing how I would handle treatment, not knowing if my head was lumpy or if I’d look okay bald – the list is nearly endless.  There was one thing I knew from the very beginning, though.  God was with me and He was going to take care of me.  He took my fears and gave me peace; He took my uncertainties and gave me hope; and He showed me that there is humor in just about everything if I’d only look for it.  I honestly can’t imagine going through something like cancer without Him and I’m so glad I didn’t have to.






Just add water

August 31, 2008

I’m in menopause this weekend.  Instant menopause, since they took my ovaries, so there’s no gentle ramping-down of the hormones (if there ever is), and there’s no help in the form of an estrogen patch (de rigur for oopherectomies, but my cancer feeds on estrogen, so no patch for me).

Chemo put me into chemopause last fall.  Then I came out and became “regular” again soon after chemo ended.  Then the tamoxifen put me back into chemically-induced menopause.  But that one didn’t stick either.  Today, though, since my ovaries are gone, I know I’m beginning my last and final menopause.

Anyone have advice on surviving the physical and emotional tumult that this is putting me through?  Web sites, support, medical sites, anything would be greatly appreciated.  I’m having trouble putting into words what this means to me, but hopefully I’ll be back on schedule with the posting and such soon.  (But for now, could someone please turn down the heat?)

Old or New Normal

August 15, 2008

As the numbness of being newly diagnosed wore off I started trying to think of some positives of chemotherapy.  I came up with a temporary reprieve from unwanted body hair, time to read my humongous book pile, an insurance-covered boob job, and a harsh, yet effective weight loss program.  Boy was I wrong!

I never lost the hair on my legs, never had the gumption to read while I was going through treatment, I finally did get the boob job after a year and a half, and I gained weight.  I gained thirty pounds over the six months of chemotherapy.  I blame it on steroids and the medical professionals at my oncologist’s office.  “If the only thing you ever feel like eating is ice cream then just eat ice cream.  It’s more important to keep up your strength than it is to watch what you’re eating.”  Luckily for me I never had much of a problem with my appetite.  So I ate ice cream.  And everything else that struck my fancy.

A couple months after my last treatment I started counting Weight Watcher’s points and in just a few weeks I lost half of the weight I had gained.  Then the bionic ovaries my doctors assured me had shriveled up and died came back to life and I started getting monthly Zoladex injections.  Guess what they did.  They made me gain back the 15 pounds I had lost seemingly over night.

We made our move from Arkansas to Pennsylvania in the midst of those injections and really, who’s going to count points or calories during something like that?  Not me, that’s for sure.  I finished the injections, I got past the stresses of settling and getting the kids adjusted in school, and I started back at Weight Watchers.  It took a while, but it finally started to budge a little.

The problem was I just wasn’t terribly serious about it.  By this time I was getting fairly close to my reconstruction and I wanted to make sure the surgeon would have enough belly fat to make breasts I could be proud of.  That was my excuse anyway.  I had been a Barely B on a good day and, while I didn’t want to be huge, I wanted to make the surgeon earn his money.  I also figured a couple weeks of narcotics following such major surgery would help with the food cravings, making getting into the swing of dieting that much easier.

It was a great plan.  I started out pretty good, even with all the meals friends were bringing.  And then…  And then I had a horrible skin reaction to something, most likely the eight hours of anesthesia and mostly likely due to chemical changes from the chemo.  They started out as blisters or maybe hives in the area of my abdominal incision and traveled down throughout my groin and pelvic area.  Between the oncologist and dermatologist I was tentatively diagnosed with dermatitis, shingles, urticaria and fungal folliculitis, but never anything definitive.  With each diagnosis came a new medicine, more often than not including high dose steroids.  “Hello all the fat I’d lost and then some.”

But wait.  It didn’t stop there.  The skin problems went on for several months and during this time the feline ovaries with the nine lives came back again.  The gynecologist tried to convince me I was’t having periods, but that the bleeding was from changes to the uterine lining due to the Tamoxifen.  She may be the one with the medical degree, but I’m the one who has lived in this body for 40-some years.  I had felt the familiar pinch of ovulation, the “bleeding eposides” were cyclical, and most telling of all, the hot flashes and nightsweats had stopped.

I had received a Zoladex injection when the bleeding started again so my estrogen level was suppressed.  This, of course, was during one of my high dose steroid regimens.  The weight was going nowhere and frankly, I was so miserable between these horrible periods/bleeding episodes and the blisters or hives – oh, and the steroids caused a terrible rash from my neck to my toes on top of the hives, which at this point were numbering close to 100 in one concentrated area – that my weight was the least of my concerns.

The bleeding had gotten so bad that I became anemic and the gynecologist scheduled me for a D&C and uterine ablation.  We had to cancel it, however, because of all the rashes and hives, etc.  What a godsend that turned out to be.  I had seen my oncologist on a Thursday and the next day the family went camping.  I started another period and on Monday I called to see what my estrogen level was just so I could let the gynecologist know.  It should have been less than 27.  It was 92.

BINGO!  I think I did a great job of keeping my smugness under wraps as my gynecologist told me, “Well.  I guess those were periods.  You’re going to need a complete hysterectomy with oopherectomy as soon as we can get it done.”  At this point I was rash free and the hives or blisters or whatever those annoying things were had calmed down quite a bit.

So I had another abdomenal surgery to remove all my girly parts and was thrown into menopause again.  After recuperating from that I decided to try Weight Watchers yet again.  I’d do okay for a couple of days and then decide my life was too short to deny myself the yumminess of life.  And then I’d do alright and nothing would budge.  Neither my oncologist in Arkansas nor my oncologist here ever seemed to care about my weight and in fact always rationalized it for me.  Every time I see my doctor he tells me I have so many factors working against me.  That’s all I need to hear and suddenly I have permission, nay, encouragement to stop at Starbuck’s on the way home for the biggest White Chocolate Mocha with whip available.

But I’m tired of this.  I want to feel better.  I want to look better.  I just want to look like me!  I haven’t seen the real me in three years.  I don’t want my feet or my ankles to hurt anymore.  I want more energy.  I want to wear cute clothes!

This time I’m going to do it.  I started Monday and so far I’ve done well.  I realize that’s only five days, but that’s five days of eating healthy, drinking water, exercising…  Now if I can only do that for another five days and then another and then another…  I realize it might be a lot slower than it was before I was 40 and before I had my ovaries yanked from my body.  But that’s okay.  I like to think I’ve got nothing but time.

Maybe, just maybe, after I’ve lost all this weight and another 10 to 15 pounds just for good measure, maybe then my new normal will seem a little more like my old normal.

Early menopause?

August 9, 2008

Can we talk about early menopause?

I don’t have much to say (yet) but I have no idea where to start looking for information.  After 6 months of chemo, 6 months of tamoxifen, and a scheduled oopherectomy, it’s not a possibility but a probability and I’d like to know what to expect.  I saw this great post by one of my peeps over at SV Moms Blog … but where are the good resources?

Where should those of us stepping over the threshhold of chemically-induced menopause begin?