Seven Years by Mary Beth

April 29, 2013

Shortly after midnight on Saturday my daughter and her friend gave me this beautiful card case to hold my business cards.

042813-1_B

Sunday was my seven year anniversary as a Breast Cancer Survivor. On Friday, I ordered a cake for myself to celebrate this day.  I don’t really drink, I don’t do drugs and I have never smoked and I still got cancer… so yes I eat sugar.

042813-7_B

I asked my closest friend in California, (who was literally the first person to hear the news as the Doctor called me at work) to come over and celebrate with me.

The day started out a little later than I had planned, I was running late for church and the chapel that I attend is very small and difficult to sneak in late. I decided to go to the church that we belonged to when we first moved here (and during my treatment) as their mass starts 15 minutes later. This parish had been talking and planning and raising money to build a new church when we became members. I do believe things happen for a reason and as I sat in the church I became very reflective on the past 7 years. I sat in the old church and prayed to heal and survive when I was sick. Now 7 years later I sat in this new church and so thankful that I am still here.
Cancer changed my life forever, not all bad, but changed nonetheless. I am healed on the outside, but sometimes the emotional side still creeps up on me. A few months back I had a “touch-up” procedure done. Before I left work for the appointment I looked at myself in the mirror and thought outwardly, most people that I meet now, have no idea that I am a cancer survivor. My hair has grown in and they can’t tell that it is much thinner than before. My eyebrows and my eyelashes have grown back and my eyelashes hold mascara again. My scars are not visible when I am dressed. People cannot see the effects of the aromatase inhibitors. But as I lay on the table with the greatest leopard hospital gown on… the tears started streaming down my face. I was back 7 years ago as they wheeled me into the operating room to remove a part of my body. I have learned we must allow ourselves to honor these moments as part of the healing process too.

042813-4_B

Today the tears streamed down my face again, so many emotions. Happiness that I am still here, gratefulness for all of the people that supported, prayed and helped me. Sadness for many of the people that I met because of the cancer that are not here anymore. I wrote and delivered a note to another close friend at that time, who had helped me with the kids. Our lives have now taken us in different directions. I sent a thank you text to Lou for supporting me during my treatment. We were close to divorcing in 2006 and then I was diagnosed. We decided to stay together. We tried for another 5 years, but it just was not meant to be.
After honoring those few moments of tears and emotions I was off to enjoy my day. I walked my favorite island and visited my friend who is still recovering from a freak illness. He congratulated me and then asked “did you think you would be sitting here 7 years later?” “Honestly, I was not sure, but my Doctors were.” was my response. They told me it would be 12-18 months of hell and then I would have a greater risk driving on the freeways.

042813-6_B

I treated myself to one of my favorite childhood candies while relaxing for a pedicure.

042813-3_B

My friend and her daughter came over and we celebrated our friendship… and the girls ate CAKE!

042813-2_B

The only part missing in the day was seeing my Dante. This was his weekend with his Dad and his future Step-Mother. Other than that…
I am a survivor.
I am alive.
I have so many amazing people in my life that care about me.
It was a great day.

cross-posted at marybethvolpini


N.E.D. – THE BAND

December 29, 2009

I have heard that having a guinecological surgeon and oncologist in one is a good find.  I was lucky in that even though I didn’t have a guinecological cancer, there was one of the best of them in the building when my oncologist suggested a hysterectomy along with my mastectomies.  Not only is his picture on the brochure for The Da Vinci machine which shows he knows his stuff, his picture is also on the cover of a new CD his band N.E.D. No Evidence of Disease has just put out.  Every member of the band is a guinecology oncologist or guinecology medical person of some sort.  Here is what I picked up at his office about their mission:

N.E.D. is made up of six gynecologic oncologists who always hope to deliver the sweetest message their patients can ever hear: “NO EVIDENCE OF DISEASE”.  Their mission is to enhance knowledge about gynecologic cancer, to save lives, as well as to bring hope through music to those undergoing treatment, and to the world at large.  Proceeds from every CD sold will be donated to N.E.D. Fund at Gynecologic Cancer Foundation (GCF), which promotes awareness and early detection, and research of gynecologic cancers.

Order the CD at:  www.marjiesfund.org, www.amazon.com, www.borders.com, www.barnesandnoble.com, www.itunes.com    

I wouldn’t normally promote one thing over another, but I know Dr. Winter personally and he’s a good guy who believes in their mission.  He never once said anything to me about his band, or their projects, I only learned of it through other doctors and a small flyer at NW Cancer Specialists.  I haven’t heard the music myself yet, but I am going to pick up a cd soon because I know the proceeds are going to a good cause.


I’m home (by Lyn)

October 12, 2009

I have more day to day info at my personal blog, but I wanted to post here that I’m home from the hospital after surgery and give an update.  I had a modified radical on my left breast, a bi-lateral on my right breast, and a full hysterectomy all at the same time on Oct. 2nd.  I wish I could say it went smoothly, and is going smoothly at home recovering, but it was tougher than we expected.  The hyster surgeon ended up spending an extra hour operating on me due to scar tissue from my c-sections that had somehow glued my uterus and bladder to each other or my insides, or something.  My bladder took the blunt force of that part of the surgery and had to leave the catheter in for 4 days to let it rest.  I was supposed to go home after 2.  Then I ended up getting a nasty bowel infection while in the hospital.  I was released on Weds. the 7th, and in the ER on Friday the 9th due to the infection getting worse.  Then Friday night my bladder started leaking (this was just this weekend) so here I am trying not to move my arms too much yet unable to use my tummy because of the bowel infection, and now my bladder LOL.  I was a sight!!!  At one point Saturday I was laughing so hysterically at how pathetic the situation was.  But lo and behold, Sunday brought some relief and I did feel a little better yesterday from all of it.  My infection is still not gone, but it is improving and I just called the doc about my bladder and he sees me tomorrow.  He told me at the appointment in a little joking matter ‘if I break it I fix it’, so I fully intend for him to fix it!  I get my right drain out this afternoon, my left is still not ready and will probably be at my appt. this Friday.  I don’t have alot to say on the emotional aspect of what I’m feeling about not having my breasts, I’ve been so consumed with all the unexpected pains to think on it much.  I’ll get there I’m sure.  I’m still in alot of pain, I heard that the mastectomy doesn’t hurt that much because they cut alot of nerves with it, but my left side does hurt the most out of all of it. When the pain ebbs, the infections are gone and my bladder is fixed, maybe I’ll be able to say it was worth having it all done together but for now I’m undecided.  My advice to anyone contemplating having such a radical surgery is this:  don’t do it the week after you finish 5 months of chemotherapy.  Give yourself a few weeks to recover from chemo first.  I’m convinced that my compromised immune system is what has made this so much harder.

On a brighter note, my pathology reports came in.  4 lymph nodes positive out of 15 and only trace ‘miniscule’ is the word the surgeon used of cancer left in the breast itself.  I have Inflammatory Breast Cancer, so it’s a little different in that it was spread all over the place as opposed to being 1 tumor.  She said there was no live cancer visible to the eye, and only under the microscope did they find the little bit they did.  It was all dead cancer/scar tissue.  She was very confident that she got it all (one plus side to having chemo the week before) and had definite clear margins.  She was thrilled as was my oncologist, and said that now I can consider myself cancer free.  Hmm… that sounds too weird yet.  Maybe after radiation and my next scan…

I will start radiation in about 3 weeks, and instead of the 6 weeks of once a day daily rads originally planned, my oncologist is suggesting a regime of twice a day rads for 3 and a half weeks.  Apparently studies are showing that it has excellent results with IBC patients.  I haven’t met with a plastic surgeon yet, nor the radiologist, I’m just trying to get through the next 2 weeks without any further setbacks.  Wish me luck.


Halfway done

September 5, 2009

I was standing in the check-out line at a clothing store this morning buying a new shirt and it hit me that this could possibly be the last time I get to shop for this body as I know it, in this size and shape.  My surgery of radical mastectomy/bi-lateral mastectomy/hysterectomy has been scheduled for October 2nd, 2009 which is less than a month away and I think I am just beginning to realize what this means.  Since my diagnosis in April ’09 I have been consumed with staying positive in the midst of all the IBC negativity, having chemotherapy and a mirage of new drugs along with it, trying to be a normal mom to my 2 year old and now 4 year old and a decently normal wife to my husband.  I thought I was doing a good job of it all, including truly facing what I’m dealing with, except I don’t think I really knew what the surgery meant.  I think most women on this site have had a mastectomy, so I know it is fairly common and that’s what I focused on.  But the new reality of not having my breasts anymore is surreal and terrifying.   My body is going to change.  I don’t know that I am mentally or emotionally prepared for that change yet.  I admit it.  I know that I need to focus on the purpose of the surgery- to make me cancer free- and I will do that but I can’t help but be saddened at the forced changes.  I do take comfort in knowing I will have reconstruction at some point, for IBCers it isn’t right away usually and I am expecting it to be about a year out from what my doctors tell me.  I have read most of the stories on here about ‘foobs’ and the different choices everyone has made with fascination, but I realize also with distance.  I didn’t relate to it so it was easy to read.  I am blessed to have ‘met’ amazingly strong women on this site and in person who have done it before me, and it’s your stories that give me strength to at least try not to focus on my fears and instead think about the future.  I want other newbies to know that it’s OK to acknowledge our fears-and this surgery is just as scary as IBC istelf to me- but we have to try not to let them take over.  I keep picturing this time next year when reconstruction is done, when I will hopefully be finished with Herceptin every 3 weeks, and my son will be starting kindergarten.  My daughter will be 3 and a half and it will be just us at home for the first time- now that’s exciting stuff I want to be around for, and thinking of these things makes the surgery worth it.  I have 3 more chemos to go, I was supposed to have it this week but the kids got me sick and I was unable to.  Then I consider myself halfway done with treatment, which sounds pretty awesome when taking it one day at a time. 

(ps I don’t know if this post makes any sense, my brain is so weird from the new drug doc put me on last week to help with the hysterectomy hormone issues but I tried:)


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.