Who Knew?

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.






5 Responses to Who Knew?

  1. imstell says:

    Jen – I honestly think this is one of the most well written pieces on the overall breast cancer experience I’ve seen. Great job!!!

  2. throwslikeagirl74 says:

    Isn’t that the truth. 🙂 I’m glad to hear somebody else is hobbling. Not that I’m glad you’re hobbling, but that I’m not alone. Someday I’m going to get my 30ish body back.

  3. FANTASTIC post!!

    I can’t believe your church let you post about sexual dysfunction. I could never imagine that on a religious Jewish website! I am seriously impressed!

    throwslikeagirl74 — so, I wanna know…. can a 40ish year old get her 30ish body back?

    I think it’s too late for me! 😉

  4. bcjenster says:

    Thanks, ladies. There’s a strange comfort in knowing all this isn’t just MY experience. Know what I mean? I guess that’s exactly why we’re here.

    RivkA – I wrote an entire post about the whole sex issue last year on my personal blog and the pastor asked if he could quote it AND link it on his blog. In his words – God wants us to enjoy a healthy sex life so this is a very real and important issue Which is all well and good until you walk into church and have all these people coming up to you and saying, “Oh! I read your post.” Sadly, red doesn’t look so good on me because I was crimson that day!

  5. Jen says:

    Do most tattoo artist’s do lasar hair removal. I was thinking about that too since my armpits feel so weird and numb now and I need to be careful about cutting myself there.

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