Wednesday, June 11, 2014

Reconstruction and it feels so good??????

My breast cancer diagnosis came as a complete shock (as most do) and then when I finally CHOSE a lumpectomy, that choice was taken away because the cancer had already spread to another area and also to a lymph node.  I found out I would have a right-side mastectomy with just a week or two until my surgery.  And I wasn't able to consider a bilateral mastectomy because of the timing (or so I was told).  At the time I just did pretty much whatever they told me to do.  I went through the research (AKA Breast Cancer 101).  Unfortunately, because it was detected in my lymph node, I had to have another surgery, an axillary dissection, to remove all of the remaining nodes under my arm.  At the time, I was told that if I went this route, it would mean that I could do chemo and then I would get to SKIP RADIATION!  Woo hoo!

BUT I elected to seek my chemo treatment at a facility near our home.  The doctors meet there and discuss cases and then compare their recommendations for treatment.  When I completed chemo, my oncologist sent me to see a radiation oncologist.  He said that the doctors felt it was important for me to get the radiation because it reduces the chance of recurrence by 70%.  Well, I was 43 at the time and had 5 year old triplets who needed me to stick around for a while, so the choice was obvious....radiation.  What I didn't realize was that it would delay any reconstruction plans for at least one year once the radiation was complete (I finished 1/8/13).

Additionally, it meant that my reconstruction options would be limited.  I had NOT received any sort of expander during my prior surgeries.  The radiation causes quite a bit of damage in that the skin becomes much less elastic and the blood supply is restricted if not completely destroyed.  Typically expanders are placed during the mastectomy procedure.  In my case, this did not happen and so I just decided to wait to find out more once I was able to consider my options.

Fast forward to 2014. My mastectomy and radiation left me with limited options about reconstruction.  I am just approaching reconstruction time.  I am freaking out to say the least.  I have chosen to get a left-side prophylactic mastectomy (no cancer present but this reduces my risk of breast cancer on this side).  Part of this is because I want to feel more "even".  I'd like to be somewhat the same on both sides (size, appearance).  My choice is also DIEP flap reconstruction which is where they use fat, skin and blood vessels to make (two) new breast(s).  Ironically, I have "worked hard" this past year gaining weight (um...yes, I meant to do it... ) in order to help give me a better chance to get two "boobs" out of my belly fat.  I'm really kidding about how I "meant" to gain weight.  It happened and then I was hoping it would be useful.  But my plastic surgeon has indicated that I will be fortunate to get two B-cups out of it.  Seriously?!?!  Has he really LOOKED at this belly - post-triplets and post-eat-to-make-me-feel-better...???  But I am not a candidate for an implant on the right-side since I had radiation without the expander.  I could get an implant on the left-side but then it would really not look at all symmetrical, so the DIEP procedure is my choice.  I think.

Anyway, my surgery is scheduled in August.  I have elected to return to Vanderbilt because I feel good about the plastic surgeons there and this is a pretty complicated surgery.  There is a silver-lining in that I will get the tummy tuck and new breasts.  But really, it is terrifying to consider surgery (and being knocked out for 9-12 hours) and the recovery.  I'm a basket case.  I'm excited.  But then I get apprehensive too.  The idea of not being able to drive, bend over, walk comfortably, snuggle with the kids, etc for weeks really makes me sad and stressed.  But I'm ready to get this over with so that I really FEEL like I have kicked breast cancer booty and I can move on and enjoy this second chance. 

I read something elsewhere about "things were aren't supposed to say" and I want to share it.  Click on THIS LINK to read it.  I think she really put into writing what many of us are thinking and feeling after a breast cancer diagnosis/treatment/reconstruction.

There are so many days when I think about blogging and I just don't seem to get the words onto the screen, so I apologize for such a random post that came out of nowhere.

I am thankful for the love and support of family and friends during the last couple of years and I continue to feel grateful that I am still here.


Monday, October 28, 2013

Where has the time gone?????

So it is THAT time of the year where there is no avoiding pink and breast cancer information and displays of boobie-saving materials.  And somehow, I still try to avoid posting and making a big fuss. There are two friends locally who are not here this year to get out and cheer for our group of survivors.  My heart still breaks over the loss of these two women and I can't imagine the loss their families continue to feel each and every day.
And some people are just completely disgusted by the wash of pink on merchandise and the various organizations asking for support.  I am somewhere in the middle.  Pink was a color that I loved prior to my breast cancer journey, so wearing it last year was easy.  This year, though, I have found myself avoiding it most days.  Denial?  Maybe.  I don't know.  But so many organizations were really so helpful to us that I hope this is a good opportunity for them to raise some awareness and much needed funds.
I think part of me just wants to move on.  Move forward.  But I am still in the journey.  Only a month ago, I had a hysterectomy in order to deal with some cysts that had been problematic.  These issues existed before my cancer diagnosis, but seemed to be even worse after my treatment and potentially because of one of my new "anti-cancer" drugs.  And the word "cyst" just really kept freaking me out though they continued to assure me that these were probably nothing.  "Probably" just wasn't good enough and, quite frankly, I no longer needed my girlie-parts.  I have triplets.  My family is complete.  And the risks far outweighed the benefits for me so I kicked those girlie parts to the curb.
Recovery has gone relatively well, though I think my bladder is still adjusting to its new space.  And the part where I am not supposed to lift anything is just wishful thinking on my doctor's part.  Do you know how much laundry is generated in our house?!?!
Next on my "breast-cancer-to-do-list" is a left-side prophylactic mastectomy (meaning that no cancer has been found on my left side, but I want it removed).  Following that it will be time for reconstruction.  I have been told to wait until a year from the completion of my radiation treatment, so nothing can happen until at least mid-January 2014.  Now is the time to find a breast surgeon, a plastic surgeon and also make the decisions regarding what type of reconstruction I will choose.  All of these topics have been touched upon, but I paid little attention as it wasn't where I was in my journey, but now is the time.  Please feel free to send me a message if you have any suggestions or advice to offer
I find that my memories of treatment are foggy.  Maybe this is the "blessing" of chemo-brain?  I am thankful that I can tell others who are beginning treatment or even recently diagnosed that it really is a journey and about a year later you can hardly believe what you went through.  You ARE stronger than you think.  You friends, family, neighbors, co-workers and medical personnel will bless you more than you could ever imagine.  And you just may find that you want to be a part of getting someone else through their journey.  You might feel the need to BE a blessing.  That's where I am and  I continue to seek out the place where I can do the most good, but still be a good mommy, because those three kiddos are still my reason for living,

Right now, my heart is heavy over the sudden life-threatening illness of a high school friend.  She is in the fight of her life as I type this and I just want to ask anyone reading this to please keep this young woman in your prayers.  She has a 6 y/o son who needs his mommy home with him.


Thursday, May 30, 2013

In the Moment - Part I

Well, I have managed to drop off of the blogging radar for a while.  It's funny how cancer can take up so much of your life - your thoughts, time, prayers, money, energy- so that it was at times a relief to blog and at others a burden.  I decided to take a breather from blogging for a bit.  OK, I can't say that I made the conscious decision, but basically I took a break because I just haven't blogged.

What is it that I do all day?  Well, I have done a little work in order to meet our monthly cash flow needs.  And I have still managed my cancer but continuing to get to various doctor appointments, scans, tests, etc.  I also continue to receive Herceptin infusions every three weeks (more on this in another paragraph).  My kids still like to spend time with me despite the fact that I am the tired, boring mom (the one who prefers to read, snuggle, play Legos vs the one who will run around at the park and jump in the pool).  We started a small garden.  I took in a new job as an Independent Stylist with Stella & Dot (  I have cleaned out MANY tubs of clothing (the kids and mine) to donate (and many more remain).  And I continue to wake up each and every day feeling thankful that I am still here, but wondering if "IT" is back.

Every pain.  Every bump.  Every weird feeling.  Every thing that cannot be explained easily (by a fall, something I ate, etc) simply causes me anguish as I decide whether to call the doctor and then while I wait to hear what she says.  It isn't negative-thinking.  It is cancer.  It is the way your breath is just taken away when you first hear the words as part of your diagnosis.  And then you can't get the cancer out of there fast enough.  But once they tell you it is gone and they have done everything possible to prevent it from returning, you just can't help but wonder if it will be back.  And how will you find it?

The doctor doesn't do any specific scans or tests unless there is a problem.  But then there is a pain here and a weird feeling there.  And another lump here.  And the panic process starts all over again.  They order a test.  A biopsy.  An ultrasound.  And you wait.  When the news is good you finally feel like you can take a breathe again.  Like the sun is really shining at that moment.  For that moment.

(To be continued.......)

Friday, February 1, 2013

Buh bye Radiation!

Yes, it's me. I'm a little behind getting the news on here, but my radiation treatments were completed on January 8th! No more daily trips to see my radiation buddies. I sit here thinking of Jerry T who had his treatment just after mine each day, yet he was almost already in the waiting room when I would arrive. We live VERY close to the center, so I would often find myself rolling in the doors right on time or maybe just a minute or two late. Let's face it, mornings in a house with three 4 year-olds can be a little chaotic, so the fact that I made it there every day was sort of amazing.
After months of being almost home-bound, avoiding crowds, germs and people in general because my immune system was shot, I had trouble finding a new routine. Then I was forced to get dressed every single morning (I used to be a morning person until chemo...and maybe since triplets, who knows, but not anymore) and rush out for this quick little treatment that seemed to be a big interruption in my day.  But I knew that it was important. The radiation oncologist said that this course of treatment has been known to reduce the chance of recurrence by 70%. THIS WAS A BIG DEAL. And the treatments were generally really fast. I was in and out in about 20 minutes.

I was so lucky that the team of radiation techs were just simply so sweet. Two of them behaved almost like a brother and sister and they were actually a joy to be around. I would always be a little disappointed when there were other techs instead of those two, but then I realized that they were all pretty darn nice. They have tough jobs. I'm sure they meet a number of patients who don't survive.  Or they see many patients, like me, for about 7 weeks and then we are just gone. Yes. Gone. I would have trouble with that were I to be in their position. I would think that they get to know people during those 7 weeks and then they are done and, let's face it, most of them won't be back just to visit. We are all, I think though I guess I cannot say for sure, thrilled to have radiation treatments done. But you start to get attached to those wonderful radiation techs that offer up a friendly hello each morning.

All in all, it went rather smoothly. Things got a little rough during the last couple of weeks. I had to take some time off when the office was closed for the holidays and then again because I developed an infection where my skin was blistering. For the record, nope, that was definitely NOT fun at all. I had some swelling in my chest and my side (actually in the area where I had a drain after both surgeries last summer) so I also had just a little physical therapy to help with possible lymphedema. But really, it could have been much, much worse and I am so thankful that it wasn't and that it is behind me.

I will update with more VERY SOON as I have a trip coming up in a few weeks to the Seattle area for the C4YW conference. This is a conference for young women facing breast cancer and I'm excited to meet other women in a situation that is similar to mine and also to learn more about treatment options and ways of LIVING with cancer rather than just existing.

Peace and thank you for your continued prayers and support.

Wednesday, January 2, 2013

Pain, Pain Go Away! A Rant!

OK, so I just need to vent and whine.  It is my blog.  And I do intend to tell the story as truthfully as possible, though sometimes I want to put a happier spin on things for the benefit of those that just don't like bad news or who might not want to hear how cancer treatment really feels.

But there is pain.  I mean, not the excruciating pain that I know Christ suffered when He died on the cross for OUR sins.  And not terrible pain like that from an accident or from a war injury.  And not the pain like those parents and families of the children and administration from Sandy Hook Elementary are feeling.  Pain is all relative.

This is the  kind of pain that sort of starts to play tricks on you.  I feel like it is sort of similar to what you hear of "Chinese water torture".  It's this constant, nagging, sometimes just dull but other times very  strong pain that seems to just keep the Energizer bunny....on and on and on.  It started back in the summer of 2011 with this lump that was sore and always seemed to be in the way of an elbow, or a box, or a book.  And then there was a little pain as a result of a mammogram (nothing terrible so don't use it as an excuse to avoid one!).  And then six months later, the pain had come and gone and come again.  This time, a mammogram and ultrasound led to a new pain in the form of a biopsy.  Again, there is far worse pain, but it wasn't comfortable.  And then the pain of hearing the words "I'm afraid it is cancer."  Those were some of the most painful words I have heard to date.  Later more tests, biopsies all leading up to surgery.  A right-side mastectomy, the placement of my port, followed later (3 weeks) by lymph node removal.  OK, bigger pain recovering from both surgeries.  Hearing that my cancer would require chemo was painful as well.  Emotionally it was crushing me.  When the chemo began and a Neulasta injection came the following day, I began the experience of "bone pain"...something not easily described and incredibly debilitating for me at the time.  Headaches due to the medications.  Joint pain and neuropathy came along as well.  And then chemo ended and radiation began.  I tolerated it pretty well at first, but I now have sores across my chest and under my arm that blistered and are terribly uncomfortable.  I can't seem to get them to heal properly and it has delayed completing my radiation. The fact that these sores are where your skin always touches clothing and always seems to keep in motion, or get pulled, stretched or squished makes them even more painful.

But today I had the first of the last five "boost" (radiation) treatments.  And I am going to push through it.  Because I can finally see the light at the end of the tunnel.  Sure, there are more tunnels ahead, but this one is almost over.

I'm mentally exhausted because of just fighting with myself about the pain that I am experiencing.  Physically, I'm tired because I have trouble sleeping when I cannot get comfortable.  I just want my old arm back.  I don't need the missing breast.  I just need my right arm to quit being sore.  My surgery was in May and it still doesn't feel or function like it did.  And I am right-handed and do accounting work, so it is important that I can get it functioning at 100%.  My arm does not feel like my own and I want the pre-cancer, pre-surgery arm back now.  This is getting ridiculous.

There are times when I just want to throw in the towel.  I want to give up.  I just want to cry.  It gets to be too much.  I feel like a crazed monkey or something because I just want to find something to take away the pain.  But I don't want to take pain medications because they just scare me.  And people who haven't been through this don't understand.  I feel like they think I am weak.  Maybe they too have felt pain and theirs was worse.  But this is still MY pain and MY body and MY life and it hurts.  It is hard fighting from inside a body that feels so broken.  I feel betrayed by this body, this shell.  And at the same time, I need to help heal this broken body so that I can be here for many more years.

My kids will start kindergarten next Fall.  I need to be here for them.  They will lose their first tooth, have a science fair project, learn to play a sport and/or an instrument and I need to be in the crowd cheering them on.  I want to be here for their first school dance, a first love, graduation from high school and then, maybe college....weddings?  Babies?  I NEED to be here for those things.  I have to pick up these pieces of this mangled body and pickled mind and push through this stupid, annoying pain.  And try not to drive everyone around me crazy as I do so.

I hate to be a "downer" and I feel like I disappoint people when I am frustrated, angry, sad or uncomfortable with my cancer, the treatments or the process.  But it is a journey.  Start to finish.  Ups and downs.  And I have my blog to help me (and maybe help someone else) get through it.  Today might really suck.  There is no other word for it.  Some part of your cancer journey, or my cancer journey might really be pounding on you/me, but there is always tomorrow, or next week, or kindergarten, or graduation or something to keep us/me pressing on.

Saturday, December 1, 2012

Visions of Radiation Machines Dance in My Head

This week I completed my 13th of 33 radiation treatments.  I began this most recent part of my journey on November 12th.  Compared to chemo, this is a walk in the park.  But do not be fooled, it isn't really a picnic either.  My skin is already having issues and my arm is showing signs of lymphedema.  Fortunately, we were able to find a physical therapist who specializes in lymphedema therapy and I will begin that treatment in a couple of weeks.  Lymphedema has been one of my bigger fears/concerns since having the surgery and now with radiation, so I am hoping that maybe it is just temporary.

Aside from that I am just T.I.R.E.D.  I wake up tired.  I go to bed tired.  And I'm tired every moment in between.  Radiation offers up more fatigue (in addition to the fatigue still haunting me from chemo) because the body is working hard to repair the damaged cells and using up so much energy to do so.  I reminded myself of how tired I was when I was pregnant with my triplets.  I remember thinking the first trimester should be easy. They are just little teeny tiny beans (or smaller).  How much energy does that require?  And then I realized that my body was busy making cells, organs, bones, etc.  Right now, I'm in a similar situation as my body is trying to generate new cells to replace the ones damaged beyond recognition (hopefully) as a result of the toxic sludge, AKA chemotherapy, and the radiation.

My daily trek to radiation takes about 7 minutes one way (assuming mostly green lights) as it is very close to our house.  The appointment itself generally lasts about 20 minutes, though only 3-5 minutes really involves me getting radiated.  The rest of the time is just the process of undressing, getting situated,  getting me "lined-up", doing a preliminary scan and also getting dressed again.  It is generally painless though I'm starting to feel really anxious trying to stay still for those 15 minutes.  It is hard to sit completely still knowing that you cannot scratch that itch and you need to keep your foot still though it feels like it is falling asleep.  And it begins to feel like your body aches just trying to keep still.  But it really is better than chemo.

I'm also happy to report that my hair is coming in rather quickly.  I discovered today that I will have to shave my legs more than once per week again.  Dern.  There were definitely some perks to chemo. **wink-wink**  My fuzzy head is almost completely covered with what I would call a "fluffy down" kind of hair.  It seems like it is darker than it was before, but it is hard to know at this point what color it really is.  There have been a few times when I have thrown caution to the wind and have taken my hat off in public because I'm just TOO hot to leave it on right then.   Lately we have had cold weather and the heat inside buildings is just awful when combined with the chemo-pause (AKA menopause) induced hot flashes.  Ugh!  I did some grocery shopping sans hat and was a little self-conscious at first but then just plain didn't care what anyone thought.  OK, I did care, but I tried to ignore those feelings and was just thankful that I could shed a layer to find some relief from the hot flashes.

I realized that I hadn't posted anything about radiation and thought an update was in order.  My body tells me it is time to shut it all down for the night.  I'll try to be back soon with more info.


Wednesday, November 14, 2012

Utah on My Mind Thanks to Image Reborn!

Last weekend I was blessed to be a part of an incredible weekend retreat in Park City, Utah. Image Reborn Foundation offers retreats to breast cancer THRIVERS and I attended a one that was specifically for "young survivors".  While I was one of the oldest participants (I'm 43 in case you were wondering), I felt like it was where I needed to be and the women who were there were amazing.

Never mind that Park City had something like 2 feet of snowfall while we were there and it was a mere 9 degrees on Sunday morning before I had to board the plane to return to sunny, WARM Tennessee.  The snow was absolutely gorgeous and I couldn't believe views - the mountain terrain, ski slopes and unbelievable homes in the area.  We were fortunate to stay in a "cabin" that had a fireplace in just about every room.  It was about 10,000 square feet and was fabulous!

Our hostess, Shelia, made us feel pampered and loved.  She is truly a generous and precious soul and I feel grateful that I was able to meet her and her sweet daughter.  There were rules that we were required to follow: 1.) don't carry your own bags...anywhere and 2.) don't do anything (like clearing the table, cleaning up the dishes, etc).  This is a woman who works full-time elsewhere and manages to pull together about 11-13 retreats each year.  Shelia is an angel here on earth!

Image Reborn (with the help of Sheila) provided us with time to rest, time to connect and also time to be restored.  One way was by offering us each a chair massage and facial.  We were also thrilled to have almost two hours working with someone who shared the benefits of restorative yoga with us.  She generously allowed us to take video of her so that we could practice some of the poses that she taught us.  Now we can go to our  (private) Facebook group and view the video whenever we need a refresher.

During lunch on Saturday we had the opportunity to talk to a doctor who discussed some of the unique issues young breast cancer survivors (AKA thrivers)  have to face, such as chemo-pause (chemo-induced menopause) and all of the side effects it offers, as well as fertility issues, the risks of facing other gynecological cancers, etc.  He patiently answered our questions and used the word "vagina" more than I think I've ever used in my entire life.  I think he helped us find some ways to manage the unpleasant side effects many of us are experiencing as well as how to potentially reduce some of our risk factors, if at all possible, or just face them head on.  He even told us that we are free to call his office if we have questions later.

We had a chef who helped us prepare our Saturday evening meal and most of us, I think, were surprised to enjoy the chopped kale salad (I even prepared it tonight for my family).  She joined us for dinner and shared information from her website.  I was part of the prep for the Irish soda bread with caraway seeds and raisins and it was a hit.  I didn't expect to like the raisins in a baked bread (for me raisins belong in oatmeal cookies or cereal),  but it was a really good bread.

One other visitor to the cabin allowed us to discuss more private issues related to self-esteem and intimacy.  She was amazing and, again, patiently answered our (many) questions and offered as much practical advice as she could.  We were thrilled that she stayed to have dinner with us and chatted more and provided examples of simple ways to improve our lives.  It was serious and fun all at the same time and I was so thankful for the time she spent with us.

I don't know what else to say about what Image Reborn gave to all of us last weekend.  They gave me women who understood what I am dealing with right now.  They gave us incredible accommodations in a beautiful part of the country.  We learned a lot about how to live our lives despite being diagnosed with this stupid breast cancer.  Friendships were formed and I feel so fortunate to have spent just a couple of days with such strong, loving, compassionate women.

Thank you Image Reborn Foundation.  Please check out the link if you would like more information about their retreats or how to support what the foundation.