Healing Journeys

I’m sorry to say that I’ve decided not to continue writing this blog. 

I’m having some issues that I need to address and I just don’t want to write any more.  

I find myself less and less at the computer these days.  I have a pile of unread emails.  Also, my daughter has been sick with her fifth bronchial infection this year and since it’s her last year in elementary school, I’ve been busy trying to get her into a good middle school. I’m trying very hard to return to my normal, everyday life and writing a blog is not something I would normally do. However, I am glad that I shared my story and hope that the women who read it were inspired or comforted.

All of my life I’ve been a worrier and now I find that I’m worrying about a cancer recurrence. I think what I need right now is to get into a good support group and to reconnect with the breast cancer mentor that I was assigned through the program, A Buddy for You . I’m sure that I’m not the only cancer survivor to be worried about a recurrence.  I’m also hoping to find some women to connect with online. I want to talk to other women going through the same thing 

It’s not easy being a breast cancer survivor.  People look at me and say “Wow, you look wonderful” and “Wow, look at that cleavage”.  What they don’t see is the scared person behind the mask of smiles.  They don’t see the person that’s just 6 months past a double mastectomy and one month past breast reconstruction surgery.  They don’t know that so far, I’m not real happy with my breast reconstruction.  They don’t know how difficult it was to decide to get breast implants.  I hesitated and now I understand why——The reconstructed breasts remind me too much of my own breasts that were removed.  And my breasts remind me of breast cancer.   I’m not sure if other women feel this way.  They may just see the positive side of reconstruction and are pleased to have new, perky breasts. 

I hope you continue to use this blog.  I was honored that Baptist Health South Florida selected me to write about my breast cancer journey. Even though another blogger will soon take over, I hope that I can still share news with you in the future.  I pray that all of my future news is good news.   God willing, that will be the case.

Thank you again for allowing me to share my story because I enjoyed doing so.  And, thank you for your comments.  But now I must move on and I hope that you understand my need to step away at this time.

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A week after my breast reconstruction surgery, when I saw my new nipples for the first time, I was shocked.  They appeared too large, were oozing and ugly.  The left one had been oozing yellowish-greenish fluid for a while. 

I visited my surgeon’s nurse who told me that everything looked good and that my breasts would drop into their final position in a few months.  She said that I could use panty liners to soak up the fluid, but I used non-stick bandages instead. She said the nipple grafting looked great and that I could e-mail her with her any questions or problems.  I’m not scheduled to see the doctor until late April and that concerns me a bit.  

A week later, I e-mailed the nurse to let her know that my right nipple appeared to have lost some of the stitching and was quite loose on one side.  I asked to see the doctor, but was told that I needed to heal completely before that could happen.  She said that at this point, the new nipple couldn’t be re-stitched.  I was disappointed and went to some online forums to see what other women had experienced.  Apparently, from what I read, this happens sometimes.   Right now, almost a month after surgery, the right nipple has shrunk some and still seems somewhat detached. The left one has not shrunk as much; is turning black /scabbing, which I was told is normal.  The tattoo portion on the right is fading some on the top.  Apparently when nipples get reconstructed, the part that protrudes can shrink a lot and may have to be redone. And, from what I’ve read, the tattoo can fade and may need to be reapplied.  I think most of these fixes can be done with local anesthesia at the doctor’s office. 

So bottom line is that I’m not thrilled with the results so far. I think I’ll need some touching up.  The scars are still pretty visible and I was hoping they would be less so.  I’m sad if one of my grafted nipples is coming off, but who knows, maybe it’ll hold enough to be repaired. 

When I do see the plastic surgeon, I’m going to ask a lot of questions. If this whole nipple thing turns out to be too much trouble, I might just get them removed and leave only the tattooed portion.  I read online that some women have done this.  They go without nipple reconstruction altogether so they can go braless.  I read somewhere that a good tattoo artist can create the look of a nipple and areola that has a sense of depth.  Maybe that’s what I’ll end up doing.

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I had my breast reconstruction surgery and did pretty well.  I was much more concerned about this surgery than the mastectomy, because I kept thinking about the “what if’s”.  

On the day of the surgery, there were some delays with another patient that caused my surgery to be delayed until 2 p.m. and the waiting made me nervous. The actual surgery took about 21/2 to 3 hours and was followed by a stay in recovery room.  I left the hospital at about 7 p.m.  Yes, breast reconstruction is an outpatient procedure; in and out all in one day!

The first night, the pain medication from the surgery was still working, so I was OK, except for the bandages feeling really tight and a very uncomfortable feeling in my abdominal area.  The next day is when the pain really got bad.  The meds I was prescribed were not helping and my neck was killing me; my eyes were shaky; and my entire abdomen felt like it had been used as a punching bag.  I saw a scab in my belly button and bruises beginning to form where they had suctioned out fat to use as filler.  I knew they were going to take some fat, but I never imagined a liposuction-type procedure or this type of pain.   Except for the bandages being uncomfortable, my chest area was actually the least painful part.   

The following day, I decided that I needed a hot bath to ease the abdominal pain and, in fact, that did the trick. Unfortunately, my bandages got wetter than I intended.  A day later, I was peeling off most of the bandages, but called my surgeon’s nurse first to let her know what was going on.  I only left on the ones over the newly reconstructed nipples because I was afraid to see what was under there.  I developed a yellow/green leakage from the left nipple for a few days, but that stopped before I saw the nurse the following week.  Thank goodness, because it was gross!!! 

It’s now two weeks since the surgery and I feel very well, but can no longer sleep on my sides.  Just when I was getting used to those pesky tissue expanders, I’m back to square one.   I’ll tell you about my reaction to seeing my new nipples in the next blog.  

I really thank God for making me strong because I have had two operations in a short period of time and have recovered from both very quickly. I know women who have done their breasts for cosmetic reasons that have been laid up longer than I was.  So thank you Lord and thank you friends and family for the prayers that once again helped me through.

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I finally got up enough courage to shop for Playboy as my plastic surgeon had recommended.  I discovered that the local bookstore carried them and went with my daughter after school to purchase one.  My daughter knows that her mom doesn’t read porn, but she understood that I needed some idea of what I wanted my surgeon to try to emulate during my reconstruction surgery.  Both of us were embarrassed, but even at 10 she’s great moral support for me. 

When we got to the store, I went to the magazine section and looked under “Men’s Interests,” but couldn’t find it.   In my lowest voice, I very discreetly asked a clerk for Playboy.  Unfortunately, this store must not train their clerks in the use of discretion, because the clerk immediately went to another clerk and said loudly, “This lady is looking for Playboy. Where are they?” Then, as if that wasn’t bad enough, the second clerk proceeded to loudly ask a third clerk.  Who knows, maybe they thought it was funny, but my daughter and I were mortified. I was directed back to the “Men’s Interest” section.  But again I had no luck finding it and had to approach the clerk again.  This time I cornered him and told him that there were no Playboys in the section to which I had been directed.  He responded that they must be sold out.  Sold out!!!!!    No, I was not going to accept that after all of this embarrassment.  I explained my situation to him and asked him to help me find similar magazines.  After some searching, he found a magazine that I knew would definitely be more graphic, but it was my only option.  I purchased it without even opening it.

Here’s’ what I learned from purchasing this magazine:  Porn magazines are very expensive. This one was close to $8.  And, they’re not hidden under jackets. If your children read magazines at the bookstore, be careful.  An explicit magazine could be looked at by any kid.  That should not be allowed and neither should clerks yell out the names of these magazines when a customer asks for help locating them.  I plan to write the bookstore’s management a letter about these issues.   

Fortunately, even though this was an ordeal, I did manage to find a couple of not-so-explicit photos that I’ll show Dr. Marshall to give her an idea of what I want my breasts to look like.  My appointment with her is tomorrow.  Wish me luck and keep me in your prayers.  My surgery is next week.

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I’m trying to put breast cancer behind me, but I keep seeing cars with the Florida “End Breast Cancer” license plates.  I never knew there were so many people who supported breast cancer by purchasing these plates. I guess I’m going to have to get one too.  It’s funny, I’m sure these plates were around long before I got cancer, but I never paid any attention to them.  Now, everywhere I look, there they are staring back at me and reminding me of the ordeal that started six months ago.  

January 20th marked the six month anniversary of the day I got the mammogram that changed my life.  Strangely, even though I want to put all of that behind me, I sometimes feel the desire to step out of my car and thank the owner of a vehicle with a breast cancer license plate. I wonder if they were affected by breast cancer or know someone who has been affected.  I’ve never had the courage to actually get out of my car and ask them, but the thought has crossed my mind. 

I also feel compelled to share my breast cancer story and hear other’s stories.  I don’t think I’ve connected with enough breast cancer survivors and hope to change that.  I’m thinking about going to a Your Bosom Buddies Breast Cancer Support Group meeting at Baptist Hospital and hope to join other groups after my next surgery.

By the way, my boob shopping is a bust. (No pun intended.)  I don’t know where they sell Playboy and I’m not sure that I have the courage to buy one anyway.  Maybe I’ll do some internet shopping.  Wish me luck.

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Last Friday, I accompanied my daughter on her 5th grade trip to Universal Studios in Orlando.  It was a one-day bus trip that had us departing from Miami at 5:30 a.m. and returning at 11 p.m.   It was exhausting to say the least, but we had a great time and the weather cooperated.  

Physically, I felt great, despite 8 hours of sitting on a noisy bus filled with pre-pubescent kids, 6 hours of walking and going on every ride except the newest and scariest roller-coaster. (To my daughter’s dismay.)  I was so proud of myself for being able to keep up with the kids and even seemed to do better than them in the sore foot department.  

I was also proud that I was able to just let go and have fun.  I tried not to think about my breast cancer surgery and the reconstructive surgery that’s coming up.  There was one thing, however, that I did worry about:

The medication that I’m taking, tamoxifen.  When it was time to take my pill, I briefly wondered if going on those roller-coasters and thrill-rides was a bad idea.  Tamoxifen is known to increase the risk of developing blood clots and stroke, so I worried about that.  Fortunately, I was able to brush those thoughts away and remind myself that “you only live once”.  I know I have to live to the fullest and enjoy every minute, and that’s exactly what I did.  I lived. I enjoyed. I realized that my life can be pretty much what it used to be. I felt joy and am hoping for more trips like this in the future.   But next time, I might skip the noisy bus full of kids and go to a quiet spa instead.

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I never thought that my first experience with plastic (cosmetic) surgery would be to cover up the scars and reconstruct the breasts that I lost to cancer.  I always imagined that it would be surgery on my nose with its deviated septum.   Since surgery and general anesthesia scare the heck out of me, I didn’t anticipate getting any kind of work done at all.  My fears, as well as the expense, made plastic surgery a very distant thought in my mind.  Yet here I am. 

The good news is that reconstructive surgery is covered by insurance at any time during the life of a breast cancer patient who has had a mastectomy.  You can even get touch-ups; get your implants replaced, etc.  The bad news is that even with insurance, you still have to come up with some money for deductibles and co-insurance.  In my case, I was asked for $4000 for this next breast implant surgery. I negotiated with the doctor’s office and was able to give them less and be billed for the rest.  I’m not in great financial shape right now, and like many people, my husband and I are just getting by.  We don’t have extra cash for piling medical bills, vacations, or even the dental work that we so desperately need. 

I’m thankful that God answered my prayers and that I did not need chemotherapy.  I’ve heard of people nearly going bankrupt just to pay for treatment, and these are people with insurance!  It’s times like these that I start doubting my decision to stop working in order to be a stay-at-home mom.  But when I look at how well my daughter is doing, and that she’s home with me rather than being in an after school program, I think my decision was worth it.   I wish that all women could stay at home with their kids if they want to, but sadly many can’t. 

What does being a stay-at-home mom have to do with breast cancer?  Well, having breast cancer makes you want to enjoy each day, but many women don’t get to do that. They don’t even get to fully recover from their treatment because they have to get right back to work.  We live in tough times and indeed our healthcare system needs reform.

I wish that women who wanted to, could stay home and raise their kids, tend to their families and take care of themselves.  In my opinion, many women can’t do that because their families need two incomes in order to survive or because they’re single moms. Maybe we’d see a decline in health issues affecting women if they had less stress.

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As if getting breast cancer isn’t bad enough, I now have to deal with an extremely high triglyceride level in my blood.   It gets worse.  Apparently, tamoxifen, the medication that I take to prevent a breast cancer recurrence, can increase triglycerides in the blood.  So now I have to be concerned about a heart attack or stroke down the line.  Thank goodness I’ve already been taking a baby aspirin every night to help prevent this from happening. 

My primary care physician has given me three months to lose 15 pounds, though I actually could lose 25. I have to start getting my triglyceride level down or my doctor will have to put me on medication to do so.   I want to avoid that, so I started my diet and will soon be on a regular walking routine. 

I was told that I have to stop taking tamoxifen one week prior and one week after my implant surgery because it may increase the risk of my getting blood clots.  Even though I doubt that the tamoxifen is causing my elevated triglyceride level, because I’ve been on it for only a few months, I’m anxious to see how I’ll feel when I’m off it.  I can’t say that I’ve had any side effects specifically from this medication, but I haven’t been feeling like myself either.   As I feared, last month I skipped my monthly menstrual cycle and instead had only some discharge.  I’ve also been feeling rather exhausted.  So it’ll be interesting to see how I feel when I’m off this medication. Of course, I’ll be on other medications after the surgery… for pain and antibiotics to prevent infection. 

Keep me in your thoughts and prayers as I get closer to the big day that happens in about three weeks.    Reconstruction here I come!

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The surgery to replace my tissue expanders with real breast implants happens in a month and I was told by my plastic surgeon to shop around for the right-sized boobs.  What? She suggested that I look through the pages of Playboy and the Victoria’s Secret catalogue to do this. But I really don’t want to look at other women’s healthy, beautiful breasts while I’m still missing my own. Sure, my old boobs were way too large and were further south than they needed to be, but they were mine.

People try to cheer you up by telling you that one of the perks of breast cancer is getting new boobs, but this only partly true. Yes, getting new boobs means that the old ones, you know, the ones that tried to kill you, are no longer threatening your life and that you might get a better-sized and better-located pair.  But, the loss of sensation can never be recovered and I will miss that.  That may explain why many women get implants but don’t bother to have the nipple and areola created.

I am excited to get my new implants, which will be more comfortable than the tissue expanders that I’ve had to put up with.  I can’t even sleep on my side with them, but it’s another surgery, another recovery period and even if they look beautiful, which I’m sure they will, I will always miss my old, imperfect breasts.

I’m worried how this surgery will affect the sensation I do have in my chest area.  Many women report not having any feeling over their entire chest after bilateral mastectomy, but except for my underarm, I still have feeling.  Occasionally, I even get strange, “phantom” sensations; sensations like my nipples are still there. I could be doing something around the house and all of a sudden, I feel exactly like I used to feel when my nipples rubbed against my T-shirt.  I guess it’s akin to the phantom pain that people who lose limbs feel.  I didn’t appreciate those sensations before my surgery and almost always wore a bra to avoid them.

Even if these phantom sensations don’t last forever, I now welcome them.

Gotta go look at some “porn”. I’ll let you know how my shopping goes.

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It’s a brand new year and I wish everyone the best.  Though I ended last year a bit depressed, I’m hoping to make a fresh start this year and do whatever it takes to keep a positive attitude and stay healthy. 

I’ve ordered lots of self-help books from the library; some are religious and others have messages about visualizing what you want to achieve. 

I know positive thinking is common sense.  Of course it’s better to focus on the positive rather than the negative!  However, I’m a real person with real feelings.  I’m also a woman with ever-changing hormones and staying upbeat all the time remains “iffy” at best.  As for visualizing things into happening, I’ll give it a shot.  Ultimately, however, I know my faith must lie in God.  But even God expects me to do my part. 

My part includes doing certain things that are necessary for my healing. Eating well and exercising are two things that I must start paying more attention to.  Finding time to relax and enjoy my family are also things I must do.  I’m a pretty simple person, so that shouldn’t be too hard.  I don’t need a spa or a fancy vacation; I can just watch the travel channel or take a walk and look at the beautiful trees.  The food and exercise thing will be a bit trickier.  This is where I wish I had the resources to afford a personal chef and an exercise room in my home.   Well, maybe for my first visualization exercise I’ll try focusing on getting my own personal chef and moving into a larger home with space for an exercise room.  Until then, it’ll be Mama Mia’s Cafeteria (which means me in an apron cooking for myself) and my exercise stepper can do double-duty as a serving tray or very low coffee table.

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