Saw the Plastic Surgeon

Hello to all,

Okay, here's the update. I saw the plastic surgeon (PS) earlier this week. The news regarding my reconstruction was not really what I wanted to hear, but remembering back on my main goal when this horrible journey began for me, which was to STAY ALIVE, I guess I can't complain.

The PS told me that my skin is very hardened and “woody” from the effects of radiation, and that if he had to decide today whether to do the conventional implant or the flap surgery, he’d have to go with the flap. As I have mentioned before, the flap surgery is quite painful and scares me so much. I was wrong however, in how I had explained the flap surgery before. I had originally thought that there would be skin harvested from my back and fat sucked from my belly to form a new breast. Nope. It seems that with either option, I will get an implant, and my belly fat will be left alone (oh good, I LOVE that fat!). The question is, did the radiation therapy remove my skin’s elasticity to the point of it reversing the effects of all the skin stretching and expanding that the PS had done with this tissue expander? It appears so. The PS said it’s still a bit too early to tell if my skin will regain any of its suppleness, and that over the next couple of months (until my next appointment with the PS in June), I can try softening the skin by regular massage and application of creams and cocoa butters/moisturizers. If I do that, I might have a slim chance of foregoing the flap surgery and having just an implant. If the skin remains hard and leathery however, then he will stretch skin around from my back to my front, to cover an implant. Recovery time for an implant: a couple of weeks; time in the hospital: outpatient. Recovery time for flap surgery: four to five weeks; time in the hospital: a couple of days. Also with the flap surgery, pain is on par with the mastectomy, and I will once again have my “friends,” those God-awful drains for a few weeks afterward. Further, after my mastectomy, I developed a life-threatening blood clot in my lung, as a result of the surgery. I now worry that the same thing will happen to me again if I have the flap surgery. Dear Lord. What a threat, what a scare.

I asked the PS about my ongoing “stage 3” fear. He told me what every other doctor has told me. There is no way of knowing what our future holds, and I can either go through life marching forward, or go through life looking backward, waiting for the footsteps behind me to grab me in the darkness. Well you know me, the glass is always half empty and I am a pessimist. Bah. So I left there in tears, and have been crying on and off ever since. I am so, so scared even now. And I wonder if I am trying to fool myself by distracting myself with thoughts and dreams of moving out of this house I dislike so much, and into that one I love so much. Is it all for naught? Should I even be entertaining thoughts of a future of any kind?

Larry, bless his heart, has said that if I want to do nothing surgically (other than take the tissue expander out and be done with it all), that’s fine with him. He would never have me go through all this pain for HIM. God bless him for that! I am blessed by the freedom he gives me in letting this be totally my choice. But I do want to feel whole again, for me. We went to Wendy’s for a burger after my PS appointment and I looked out the window at this lovely tree that was in full bloom. I first thanked God for letting me see the beauty and wonder of His work. But then I stopped to think of what made this particular tree so pretty. It was the symmetry of it. It was shaped the same all around. Balanced. That’s what I want to be again. Balanced. With symmetry. I want to feel as normal as I can once again. But ... doesn't everyone in my situation? And once again, breast or no breast, reconstruction or no reconstruction, I AM ALIVE, for now, at least. For how long, I don't know. But then again, no one does, I guess.

So, as you can probably tell, I'm a little down. Trying to go forward and put my life back together after an experience like this is NOT easy.

My surgery, which ever kind I get, is scheduled for August 12. I hope you will all keep me in your thoughts and prayers. I will go to the plastic surgeon in June, at which time, he should be able to tell me which procedure will be best for me. In the meantime, I am applying creams and lotions like it's 1999! If I can get this skin all soft and supple again, maybe I won't have to have the flap surgery after all! Fingers crossed!

Thank you to everyone again for hanging in there with me. Please keep praying for me. I have come a long way, but still have a ways to go, and have come to depend on your prayers and support! Oh, and the consensus on the gray hair seems to be pretty positive. Thanks! Maybe I won't have to visit the Clairol aisle after all!

Love,

Deb 3333333

THE NEW ME!

Hello family and loved ones!

Well, as you can see by the new photo I posted here, a "new me" is slowly emerging. It's been a long, TOUGH road and a process I would not wish on my worst enemy. But slowly, I am getting there. I am still quite weak, still move pretty slowly, and I sometimes walk with my big, tall walking stick. But I am doing much better.

As I have mentioned before, my hair is coming back in, snow white, or, I guess more a gray color. It is still very, very short and close to my head, but it's definitely coming back. I can't say it's coming back in a different color than it was, because actually, I think this gray WAS the natural color; I just didn't know it because I kept it dyed a dark blonde all the time. Anyway, I will probably let it grow out this color and see how I like it. In the meantime, I am sporting this new wig that you see in the photo. My real hair had begun to show below my wig, so I bought a new wig that is the color of my natural hair. And as you can see, my real hair is indeed poking through around my ears under this wig too. But with the new wig being the same color as my real hair, it's a more natural look. Dunno if I'll be able to get used to the look of this new GRAY me or not; time will tell.

Feedback anyone?

The awful weight gain is "weighing" heavily on my mind. Further, my oncologist, whom I saw a couple of days ago, said that the Arimidex (hormone inhibitor) I have now started (and will take for five years) causes weight gain! Man oh man, I just can't win here. But at least I am alive!

I am so enjoying the new growth all around us here! Everything is turning green, blooms are on the trees, and the air smells SOOOO GOOD!!! I love all the new life around me, and have a whole new appreciation for EVERYTHING. Sometimes it makes me shed a tear to know that I am here to see another season begin.

Our house is now officially for sale. We have been working very, very hard to spruce this one up and get it ready to show. It has been a lot of work, and we have gotten rid of literally truck loads of things. This has really made me tired, but it has taken my mind off of the bad things, and allowed me to think of positive things, like the desire to move! No showings yet; please pray that we can sell this house before the one we would like to buy is sold to someone else.

Thank you from the bottom of my heart to all of you who keep up with my blogs and have stood by my side throughout this terrible journey. I know it sounds so cliche, but I truly have benefitted from the support of all of you, and to know I was in the thoughts and prayers of so many has really gotten me through some very tough times. Please continue to pray for me, as I have a ways to go yet. I will see the plastic surgeon on Monday. Hopefully, he will tell me when the time will be right for him to complete my reconstruction!

Love to all,
Deb

PS: Sister Dee, are you getting my emails?
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Feeling Better

Hello everyone,

Well, as you can see, I have changed out my photo from the one showing my FIVE-ALARM radiation burn, to one that shows a much more pain-free me. I got many comments on my radiation photo, and I apologize for alarming you. Yes, it was painful, but that is part of this process, this ordeal. I am using my blog not only to communicate with all of you who care so much, but also as a personal journal of this process. So I am trying to show all the ups and downs of what this journey has entailed. WHEW!

In this new photo, I am still wearing my trusty wig, which is the color my hair was pre-"Big-C." But underneath this wig is a snow-white, new crop of hair that's coming in at what Larry says is, "a pretty good clip." Groannnnnn!

So, as you can see, I am feeling a little better, and I hope this eases the minds of those of you whom I had concerned with that last photo of the radiation burn. As you can also see, and as I have mentioned a time or two, I have gained 30(!) pounds! No one told me that the chemo treatments I'd be getting were full of steroids! Doctors have only recently told me that a weight gain was expected. I just hope I can get it back off again! Now that the weather is getting nicer, and I am feeling a bit better, perhaps I can do some walking.

I still tire very easily, I'm still pretty weak, and I can't do as much as I could before all this started. But gradually, my strength is returning, and I am spending less time in bed. Thank goodness, because I am getting tired of lying in this bed, getting up only to go to doctor appointments!

Next on the docket is the completion of the reconstructive process. My plastic surgeon tells me I have to wait for three to four months after radiation is complete, to let the skin and underlying tissue heal before he performs the surgeries necessary to reconstruct the breast. So now, I have some "time off" from so many doctor appointments each week.

I did recently see two of the doctors on my team (two different appointments). One was my lymphedema doctor, and the other my medical oncologist. Both told me they expect me to "be fine," and be a long-term survivor. Praise God, because this is a bit different than I HAD been told previously. I am now on Arimidex, a hormone inhibitor, which will hopefully block the hormones that drove the cancer to begin with. I will be on the Armimdex daily for five years. If during that time the cancer does not return, I will be considered to have been cured. So keep praying! And I humbly thank all of you for the prayers you have sent my way already. PRAYER WORKS!

So until next time, Larry and I would both like to wish all of you a most blessed Easter. PRAISE GOD, THE LORD IS RISEN!

Love to all,
Deb 33333333333

Whew! Radiation is Complete Alright ...

... and now I am really "feeling the burn!" The doctor said that even though my radiation treatments are complete, my skin will probably continue to blister and burn for a few more days. I am in a lot of pain. Doc gave me soaks and "cool pads" to put on, and Vicoden to take orally, but these things don't help much. Still though, if all this pain, all the sickness, and all the surgeries keep this cancer monster from EVER returning to terrorize my body, IT IS ALL WORTH IT!!! I attached a photo of my under-arm area so that you could see why I am STILL having problems using my right arm. I thought once I got well past the surgery, my arm would be more useable. But having lost so many lymph nodes on that side made it difficult. And now, as you can see by the photo, I am still having trouble using my arm. But once I finally get this under control, you'll be hearing from me personally!

Love to all, still and always,
Deb 333333333333

YAY!! RADIATION IS COMPLETE!!

My treatments are officially done! Oh my gosh, I never thought I would get here, but here I am! Six weeks of radiation, five days a week, 30 treatments, and I am done! Yippee! Now mind you, it is not without pain. True enough, radiation didn't make me sick like chemo did, but lemme tell ya, I am BURNED pretty badly across my chest and most significantly under my arm. My skin is badly blistered and a very deep red. Under my arm, it's beyond red and is a black color. The doctor gave me ointments, soaks, cool packs and the like to put on the burned areas, and these things help. But it is still quite painful. BUT COMPLAINING, I AM NOT! I guess I am now considered to be cancer free! I hope this is true, and most of all, I hope this horrible beast never returns to threaten my life again.

In the radiology oncology office hangs a very large marine bell. On it is engraved, "THIS BELL RINGS FOR ALL WHO HAVE WALKED THIS PATH." And along the bottom of the bell is engraved: "Courage, Hope, Triumph, Strength, Faith, Love." On the last day of treatment, patients celebrate by ringing this bell, and it is LOUD. So today, I got to ring the bell! And I let it CLANG, too! There are several ladies I have shared the waiting room with over these last several weeks, and we have kind of become our own little support group (though I am still the highest of them all, at stage three; and I am the only radical mastectomy while the others are all lumpectomies). Anyway, knowing it was my last day today, one of the ladies brought me flowers. And when I rang the bell, she and another of my "buddies" were in a photo I had taken of the event. I will cherish these fellow breast cancer survivors forever. And Linda (the one who gave me flowers) and I plan to meet for dinner soon. I also plan to go back next week, when it will be the last day for many of these ladies, to watch them ring the bell too. The bond we ladies formed is very touching and meaningful to me.

So everyone, another milestone reached. Now I am "off" for a few months, other than checkups with all the various doctors on my team, one of whom is the plastic surgeon. I will see him at the beginning of April, and hopefully, he will be able to give me some idea of when the reconstructive surgery can be expected. WHEW! I can't believe how far I've come, and ..............

I WOULD NOT HAVE MADE IT THIS FAR WITHOUT THE LOVE, THE SINCERE LOVE AND SUPPORT OF ALL OF YOU OUT THERE!!!!!! Gosh, the cards, the gifts, the prayers and the good wishes sent my way throughout this process have been very instrumental in successfully getting me to this point! And the cheering me on! I don't know HOW I'd have done this without all of you! It has NOT been an easy journey. In fact, it has far and away been the most difficult physical challenge I have ever faced. It's true what they say: "Breast cancer is not for sissies." I am so blessed and so thankful for all of you who have kept me close at heart all this time. My personal thank-you's are coming soon, as promised! My right arm (my writing arm) is still very weak and difficult to use, but it is getting better every day. And I have not forgotten the importance of letting loved ones know on a more personal level than a blog, what the support of all of you has meant to me! THANK YOU!

I have taken many photos throughout this journey, and they include all the things my beloved supporters have sent me along the way. Everything from cards to flowers to gifts have been photographed, so I will forever be able to enjoy and remember the love and prayers that I have been so blessed by. There are also photos of me going through this process throughout, a couple of which you have seen (for example, that shot of me in bed, so chemo-sick, I could hardly think). I have begun a scrapbook of this painful process. It seems an odd subject matter to make a scrapbook of. Most scrapbooks contain happy memories. While my journey has not at all been a happy memory, it is, nonetheless, a year of my life that has significantly changed my life forever. One day, I hope to look back on this, look at what I went through and how far I've come. And I hope to say, "WOW! What the HECK was THAT???!!!"

I am not done blogging though, as this process is not yet over. I will still be blogging and keeping you up with checkups and the reconstructive surgeries (though I don't think I'll post photos of that!). And with this 30-pound weight gain (caused largely by the steroids in the chemo treatments), as well as my very, very SHORT, GRAY hair (still so short I continue to wear my wig), I am not exactly eager to post photos. But I WILL still be blogging! So please check in from time to time, comment if you are so inclined, cuz I LOVE reading your comments. And always, ALWAYS remember how much each and every one of you mean to both me AND my angel, Larry!

Love to all, and prayers of thanks, too!
Deb 333333333333

Hello folks,

I am trying to get better about keeping up with my blogs, but my naps seem to get in the way.

I’m doing okay, hangin’ in there. I am just now beginning the fourth week of six weeks of radiation. So far my skin seems to be holding up okay, from what I can tell as a layman. It’s a little more tanned than it was, but other than that, the skin seems to be holding up okay. I am very liberal with the creams and lotions the doctor gave me.

Compared to chemo, radiation is a breeze, though it does make me very tired. It doesn’t hurt though, I don’t have to get poked, and it is pretty fast. I am usually in and out within a half hour, start to finish. In addition, many of the women there are also breast cancer patients, and many nice acquaintances are being formed in that waiting room. We women in there have appointments every day, all 10 minutes apart. So it is the same group of women in there every single day. It’s nice to chat with others in the same mess I’m in. I am still the winner, however, in the severity of my cancer’s stage. Everyone else is Stage 2 or lower, and here’s me at (gulp) Stage 3. The level of fear amongst all of us is the same though. Everyone in there has a sobering, calm, unspeakable fear. No one is shaking and crying, just accepting and hoping for the best. We all talk quietly amongst ourselves, often in low whispers, about all the “what if’s” we experience, as if somehow should our words be too loud, the fears will come true. And we talk about how this experience has caused drastic changes in the way we all look at things, how this has impacted all of our lives forever.

We also talk about the stories we all hear of breast cancer survivors. And we note that, unless experiencing this disease firsthand, no one really knows what it took or how hard it was for those ladies to become survivors. Until now, for all of us ladies in that waiting room, seeing breast cancer survivors celebrating was wonderful. But now we all have a whole new appreciation for WHY that celebration is so important to them. This has been a difficult and profoundly frightening battle for all of us ladies there in that waiting room. The journey has been long, painful, and so challenging. We are all tired, weak, still in pain, afraid, and feel alone, as we all sit there together with caps covering our bald heads. We all have battered self images and compromised self esteem. Yet, we all look forward to the hopeful thought of joining our brave "predecessors in pink" in the celebration of survival. Of wearing that pink ribbon and giving it the same personal stature and honor as a Purple Heart, because we earned it through a very tough fight. And we all hope and pray that one day, we’ll be strong and healthy again, so that we too, can reach out to the “newbies,” and help them through what so many courageous women who have gone before us have helped us through.

~ ~ ~ ~ SIGH ~ ~ ~ ~

My hair is coming in quite quickly, considering that just a month ago, it was all skin. My hair looks to be mostly white, but darker in back. I may just let it grow all the way back in to the length it was before without coloring it, just to see what it looks like. My eyebrows are almost totally back in, so it’s back to daily tweezing (ugh). And I am getting tired of gluing on false eyelashes (what a pain!), so it’s nice to see that my own lashes are coming in too. My nails are quite another story though. They are very short and very thin, broken and peeling. I had worn acrylics for years and years, and I would start having them done again, but the doctors advise against it. Apparently one way they monitor things is by looking at the nails, so they recommend no acrylics.

I've recently developed a severe ache in my right arm, which my radiation oncologist seems to think may possibly be lymphedema, due to the surgical removal of so many (19) of my lymph nodes on the right side. So I have yet another doctor on my team, a lymphedema specialist, whom I am scheduled to see next week.

I continue to receive many, many cards and notes from well wishers, who are praying for me and letting me know I am in their thoughts. I know I say this a LOT, but honestly, I just have no way of ever expressing what those cards mean to me. I will keep them always and treasure them. They are truly uplifting and encouraging to me. I thank you all from the bottom of my heart.

So until next time, I will keep all of YOU in MY prayers too. I am so blessed in so many ways, but especially in having so many people cheering me on in this battle. Thank you one and all, and forever.

Love and God’s blessings,

Deb

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Feeling Pretty Down

Hi to all my family and friends,

Seems I am slowing down on my blogs of late. I apologize for that. I have been pretty down lately, feeling alone and scared. I don't know why. I know a positive attitude is key to recovery, and I have tried to be positive and stay upbeat. Now that chemo is behind me -- which was torture for me -- you would think I would be happy to move forward with my treatments and my life. Trust me, I am eccstatic that chemo is over with!

I have now begun radiation treatments. This is my first week. I will have 30 treatments in all, five days a week for six weeks. I have had only three radiation treatments so far, but to date, they are totally painless and not nearly as difficult as chemo was. Another reason I should be happy and positive.

Now more than ever, I increasingly find myself lacking confidence that I'll be okay. Up until now, this whole thing has been absolutely surreal to me, like a nightmare I can't wake up from. Now that the worst is behind me as far as treatments go, I think everything is FINALLY sinking in with me. Oh I always understood what was going on, of course, and the dangers and seriousness of it, but it was pretty abstract to me at the same time. Now however, the fear is really taking over, and I am so afraid I won't survive, at least not for more than 3 or 4 years. I get different stories from different doctors. My oncologist told me that with all my treatments (modified radical mastectomy, chemo and radiation), there was only a 14% chance of the cancer returning. Pretty good numbers. Then, when I moved on to radiation therapy, the radiation oncologist told me that there was a 14% chance of the cancer returning to THE ORIGINALLY AFFECTED AREA, but that because my stage was so high (stage 3), there was a higher chance that the cancer would return elsewhere in my body. Gulp. Then I got on the 'net to try to find a discussion group made up of stage 3, LONG-TERM survivors. I could find none. Further, I read on the internet that there was only a 50% survival rate for stage-3 breast cancer patients.

Soooo ... I don't exactly have the warm fuzzies here. Truth be known, I am scared out of my wits, and quite depressed.

With chemo finished, I would have thought I would have begun to perk up a bit physically, too. While I am no longer nauseous, I am still very, very tired. It takes very little to wipe me out. Even stress seems to wear me out. Yesterday, we had another upset with our insurance company (the second such upset), who is questioning whether they will cover the $130,000 cost of my radiation treatments, and whether I even need the radiation therapy at all. As it turns out, they now assure us they WILL cover it, but the stress it brought on before the approval wiped me out so much that I slept for three hours in the afternoon yesterday, and 11 hours through the night last night. IS THIS DEGREE OF FATIGUE NORMAL WHEN I'VE BEEN FINISHED WITH CHEMO FOR FIVE WEEKS NOW??

A bright spot in my week: I got a new wig. The wig I originally started with, which was not cheap, was one I was never really comfortable wearing. I felt it looked very "wiggy," seemed to be the wrong color, and the style wasn't right. I recently ordered a "cheapie" from one of the TV shopping channels. I was astonished at how much more confident it made me feel the moment I put it on. It is a short style, and I have never had short hair, so that is something I definitely have to get used to. But the quality and color of this more inexpensive wig is very impressive, and though the style is not one I am used to, I feel more confident in it because it looks so much more believable. So there are still good things happening.

Of course, I never EVER take for granted the love and support of family and friends. How I hope I am around for years and years to enjoy all of you for a long, long time, and to forever thank all of you for all of that love and support. This ALWAYS remains a bright spot for me and really keeps me going. Truly it does.

Now that I have bellyached and acted like a cry baby, I will sign off for now. I thank all of you for letting me vent, and indeed for even reading and keeping up with my blogs. There are so many out there so much worse off than I am, and I have so much to be thankful for. But often, it's easy to temporarily lose sight of that when I am so, so scared. "Stage 3." Please give me another chance at life, Lord.

My love and hugs to all of you.

Deb 3333333333