Staying A Breast with DCIS - Bellevue, WA

You get the call from the pathologist and you hear...

You get the call from the pathologist and you hear the words, "The test was positive for cancer in your right breast." You can't breathe. Everything stops. The words echo in your head, but you still can't seem to grasp them. It seems as though you're looking through a lens, as if watching a TV show or movie as it simply can't be happening to you.

I was diagnosed with DCIS or ductal carcinoma in situ. Even though the pathologist tried to smooth the news with "If you're to have cancer, this is the best one to get" didn't seem to soften the impact. Learning that 1 of 6 diagnoses of cancer are breast cancer did little to calm me. Apparently, I had just joined a new group or club I never knew existed.

After consulting with a surgeon and plastic surgeon, I opted for the complete mastectomy. If only my right breast were removed then I would need reconstruction on one, but to match my left, which wasn't any lightweight in the tata hierarchy, I would need a reduction and some reconstruction so they would match. Even with that, the chances of matching were not 100%. Plus the fact that I was warned that my chances of a cancer diagnosis in the left was 5 times greater and I would require an annual MRI and mammogram was just too much maintenance for me. So I decided to have the left removed as well.

When you tell people you have cancer, they grapple for something to say. I could feel the icy awkwardness and decided that a joke, even about something serious, would ease the silence.

"Yep, decided to just get them both removed since trying to reshape the left would be tough," I joked. "I'd have one perky boob pointing towards the horizon and one pointing south. Really, I'd just look confused so it's better if they point in the same direction." My friends would laugh and the situation would ease.

I joked about having bobs like Barbie, perky with no nipples, and entering wet t-shirt contests. "And look how much money I will save on lingerie!"

"Yep, going to find about about a tummy tuck, as I have enough landscaping to turn my stomach into a pair of C-cups. Maybe pull my belly button in line with my new breasts and convert it to a credit card holder or coin purse," I'd laugh. "I'm definitely turning lemons to lemonade."

The fact was, I was scared to death, but I didn't want anyone to know. Having something inside you like cancer, and not being able to fix it, cut it out and make it go away is frustrating and frightening, especially for a career woman who has never let an obstacle stop her. Suddenly you're helpless and making others feel better while your mind continues to swirl with thoughts of surgery, reconstruction, scars, pain...and it's safer to keep it to yourself as sharing just makes others feel more awkward and distant. The last thing I wanted was pity.

Two weeks later I had a mastectomy. I arrived at the hospital at 5:30am Thursday and was released the next day at 11:30am. I was bound and determine to go home even though I felt like I had been hit by a truck. Now I understand what road kill must feel like moments before going to the light. Exhaling hurt. Inhaling hurt more. I couldn't raise my arms to put on my t-shirt. I felt like the Robot on Lost in Space series, only able to rotate my arms from the elbows. Bending over was excruciating, but getting up from the bed was worse as you can't use your arms as leverage -- no pushing or pulling. "Danger Will Robinson, this totally sucks."

When I got home I raised my shirt and took a look at my chest. Yes, the "girls" were gone and all they left was scars, tucks and bumps and some bruising. I also saw my stomach really for the first time. Now I know why God gives women breasts: it's a visual barrier to our stomach. Yikes. I decided that was enough of an adventure for one day.

The four drains, two on each side, hurt and I have to drain them 3 times each day. Not only drain them, but measure the fluid as well. This is not for the squeamish, but you do what you have to do. You cannot take a shower or get yourself wet from the waist north. I wash my hair in the kitchen sink and then take a half "bath" each day.

I have had to sleep on my back like a mummy. If mummy's do rise, I can tell you it's not for revenge, but from back pain from lying flat for longer than an hour. It's tough to get comfortable, but a pillow in the small of your back does help. Getting any real rest is iffy. I stopped taking the Percoset less than a week after the surgery.

After two weeks, I can get out of bed with no pain. My chest feels tight and looks like a patchwork quilt sewn together by crack heads. I have two extenders, which are about a B-cup. The extenders feel strange inside you. You know they are foreign and when you lie down, they don't slosh to the side like your real tatas. They stay put, pointing upward. Always saluting the world.

I'm getting around great. Got two of the drains out this week so I am thrilled. That's two weeks ahead of schedule! It hurts less when I try to get comfortable to sleep. And it's easier getting dressed since I'm not hiding two sets of drains beneath my clothes. I'm bringing Grunge back into vogue.

I know everything will be fine. I have a long road ahead, but it's a better road than what I could've traveled. And, I am paving my road, cancer isn't. I'm cancer-free and looking forward to the next Relay for Life and to do that brisk walk up the survivors lane. I may get a new pair of tennis shoes just for the walk!

If it wasn't for me remembering to finally get a mammogram (which I rarely did) and a great breast imaging clinic, the road could have been much different. I now tell every woman I meet to get a mammogram. Period. I bring my own soapbox.

And if by chance, you ever have to deal with a diagnosis that turns your world upside down, you can cry, get depressed and be the ultimate "Debbie Downer." Black clouds can fill your world. Or you can turn lemons to lemonade, take your fear and convert it to humor, and meet your diagnosis head-on, knowing you don't have to jump every obstacle, but simply walk around them.

There is nothing you cannot do if you believe. Take no prisoners. There's a silent army behind you.

One Step Forward, Two Steps Back

After two weeks, I was able to have to drains removed. What a relief. The drains are bulbs attached to long transparent hoses sewn into your skin beneath your armpit. They must be emptied three times a day and the fluid measured and recorded. They are uncomfortable and difficult to hide. The fluid is the color of rosé wine to a white wine. It's nasty and is a continual reminder that you are not 100%.

Two of the four drains were removed and I was ecstatic. Progress was being made. Unfortunately one week later, fluid had collected in my lower right "former breast" and it was determined that it had to be removed. Not only that, but removing some of the tape revealed an area where the tissue was not healing properly. My surgeon decided it should be removed and then we could remove the fluid as well.

I arrived the next day and she performed the procedure, removing the "rotted" skin and sucking out the fluid. She was surprised I had accumulated 20cc's of fluid, but was hopeful that it wouldn't collect again. She stitched me back up. I felt nothing. Although I could see her sew me back together, I felt nothing but a tug and pull. It was like I was watching someone else being sewn back together.

I arrived at my next appointment, feeling pretty good that my healing seemed to be going pretty well. I undressed, put on my gown and waited for the examination. My surgeon poked, pushed and thumped my lumpy former right breast. I could see she wasn't pleased.

"You're collecting fluid again. I can push here and it bulges there. We have to put the drain back in." She handed me a mirror and pushed a lumpy area. It bulged to the upper right. Nice. My chest is like a waterbed.

I was crushed. Defeated. No, it really couldn't be. This was such a set back. I wanted to cry, but didn't dare.

"This will set you back a couple of weeks," she said. "I'm sorry. But we have learned that you make a lot of fluid and we need to be patient."

"What about the left? It's still going ok, right?" I asked.

"Yes. It's healing really well."

Ok, one bright spot. At least I could maintain my bragging rights on the left drain removal. That was a step forward even though the situation on the right was devastating...two steps back and a bit of a pause, a long pause.

I drove home, forcing back tears. I don't cry. I crack jokes. That's how I relieve stress, but this time, I was out of jokes. I found no humor in this situation. I was scheduled to have the drain replaced the next day.

FAST FORWARD

The procedure took about 30 to 40 minutes. I barely felt a thing as my chest is numb. I now have to large bulbs poking out of my right side collecting fluid. The area around the new drain is numb from the procedure, but I know later today it's going to be painful.

It's hard to crack jokes right now. Give me a day and I'll be back. I know there has to be a bright side to this. I just need to dig a little deeper to find it. A lot deeper.

Feeling sorry for myself....

The drains stopped working late Friday, with fluid leaking from my side onto my nightgown as I slept. I woke up damp and knew I had a problem.

Alone in the bathroom, I struggled to get the drains to work again. Opening and closing the bulbs as if the other 50 times I had done it were just trials for the next time it would finally work. Each time I opened and closed the bulb, it would again refill with air. This meant that the drain inside me wasn't sealed and no fluid would collect in the bulb. I started to cry. All I could think was going back into the hospital and having them reinserted.

One drain finally started to work and some fluid collected in the collapsed bulb. But it was the second, the newly reinstalled drain that continued to worry me.

Off and on during the weekend it would work, then stop, then work. I never felt so low. The area around the drains was growing more red and irritated, and every time I added another stick of medical tape, my skin seemed to scream.

I tried pushing the drains more inside me, but the stitches to my skin only went so far. And it continued to hurt like crazy.

By the time my noon appointment arrived on Monday, I was close to tears. I couldn't move freely as the drains caused me pain. The nurse/receptionist could see I was not my typical chipper self. I walked as it I wore a full diaper.

Fortunately, my doctor retaped the drains in place and they did work for awhile. They didn't hurt quite so badly after she readjusted them. As she spoke, I sobbed into a wadded up Kleenex.

I did get the last of the drains removed from my left side. Woo hoo. I think my doctor felt sorry for me and took it out so I had at least one thing to be happy about. The other two drains would stay and most likely be out at my next appointment.

Ok, not so bad. I sniffed, patted my eyes with the clumpy Kleenex and smiled. So just one more week? I don't have to get these reinserted?

She nodded "no."

Awesomeness. Lemons to lemonade. I have seven more days of drains and then good-bye. All of that worry and misery was for nothing....well, maybe not completely a waste. I did get a good cry -- a cry I probably needed to do a month or so ago when I got my diagnosis and didn't.

Well, maybe better late than never. It felt good.

Drain, drain, go away

After updating this post and reading all of your kind words, I left to run an errand. As I plopped myself in the front seat of my car, I looked down and noticed what looked like a string lying on my little black poodle mix dog sitting in the passenger seat. The lighting in the garage isn't the best so I didn't realize that the larger drain had just fallen out.

Yes. It just fell out. Apparently, the drain had surrendered, trying to escape by freeing itself from my armpit. The drain was giving up after my nearly obsessive threading and emptying, worrying that it would clog and I'd end up looking like a puffer fish -- poke me and I'd burst.

The drain wasn't working that morning and now it was out, lying on my car seat like some sort of awful reminder. I quickly snatched it and set it on the car floor. My dog look puzzled, obviously sniffing something odd, but after a pat on the head her attention was back again to our ride. "Squirrel!"

I started the engine and realized I was smiling. It felt good. The drain was out. I checked to see if I was damp from any residual fluid. Nope. All good. It no longer pinched. The other drain seemed to be in place, undisturbed. I sighed, feeling almost gleeful that only one remained. I really was having a happy moment! We ran our errand and to celebrate, my trusty best friend and I hit the Burger King drive-thru for lunch. I felt so good. Yes, of course, super size it. I'm celebrating!

When I returned home, I rechecked the last drain, the one that was replaced a week earlier. It still was not working. Both drains had stopped working and no matter how much I had struggled earlier that morning, nothing seemed to help. No fluid was collecting and the bulb would just fill with air. No matter how often I threaded the tube and opened and closed the bulb, it would not suction. I could feel the drain inside me, pinching if I moved and the area around the wound was red and itchy. It felt like a thorn in my side, a dull ache that just wouldn't go away.

I'd had enough.

Since Monday night, the drains had effectively stopped working. One had even fallen out and was held captive in my car. It was time. I grabbed my makeup mirror and scissors. I removed my shirt and carefully snipped the stitches from the drain that had fallen out. Snipping the sutures wasn't easy, but I finally removed that last of the black line.

Next, the last drain. I gently snipped the black stitches that bound me to that nasty plastic bulb. Using tweezers, I removed the last of the stitches. They felt like fishing line, sharp and stiff. Next was the tube...

I began slowly pulling the tubing. I could hear myself making grunting noises, but I couldn't stop. It hurt a little, but felt so good as the tube slowly revealed itself. I sounded like Tim Allen doing his "man" grunt, but this was the female version. "Ooh, ahh, ooh!"

Oh, I cannot tell you how good it felt to pull the tube out. I was finally free. I even did a little dance, waving the bulb in the air. A topless middle aged chubby woman dancing with a tube and drain in her bathroom. Oh, it felt to good to be free. I had pulled at least 6 inches of tube from within my side.

Ok, maybe I shouldn't have done it. I accept that and I will face any consequences that may result. But inspecting the tube showed it was clogged and no fluid would pass through the tube to the bulb. It wasn't working. Even if I had left it inside me, it would not function. The clog was significant, about 4 inches long at the beginning of the tube deep inside me. No amount of threading, tugging and pumping of the bulb would move that clog along. It was effectively glued shut. The only thing I would miss by leaving it in is a few night's sleep and the joy I felt by having it out.

Last night I had the best night's sleep since the surgery. Even though I still can't roll on my side as both are still very tender from the wounds, I relish the thought that it is possible. Funny, how something so small can mean so much! Sleeping on my side is a huge goal right now and I'm giddy thinking about it. I know. I sound crazy. But it is a step towards normalcy. I know I need to walk, but I really want to run. I'm trying to pace myself, but it's tough. I want to be whole again. I want my life back.

I know my doctor may not be too happy with me, but I can't stuff the drains back in. It seems to be fine today and my skin is less red. I think it will all be good when I see her next week. I'll stay on the antibiotics just in case. I may keep the last drain with the clog as evidence so she understands that it was futile to leave it in. I had no choice. At least I am comfortable, mostly pain free and I have something new to look forward to -- a decent night's sleep.

I may go take a nap just to try it out! :)

Shower Nirvana

I waited a day before taking the plunge...yes, you know what I mean. I took a shower. For a month, I had been moving dirt around with a warm wash cloth and bar soap, careful not to get my bandages wet. Now, drain-free, I could take a shower.

Seriously, it was Nirvana. The warm water beating against my scalp and pouring down across every part of my disfigured body. It felt so good. Who would've thought something we take for granted would be so incredibly important! I stood in the warm shower, steam tinting the glass doors like fog. Oh my God was this awesome.

I stayed in longer than usual and cleaned parts of me I knew were in dire need or at least I felt like they were. It felt so good to be fresh. I dried off with a towel and stood in front of the mirror.

Not a pretty sight. Odd looking bulges of skin with folds like pinched crust appeared where my breasts use to be. The bulges protruded under my arms, where a dimple appeared on both sides. I put my finger in it. This is where back fat meets breast, I assumed. I could see the half moon scar where my lymph nodes were removed. It was still pink.

Looked like a war zone.

I touched my new breasts, which were really extenders and it was a strange softness. It felt much like one of those heavy duty air mattresses, mooshy, but with some substance. I poked gently and released. It refilled. Yes, just like an air mattress.

I scanned my stomach. Not a pretty site. Hills, valleys...the only thing I didn't have was the amber waves of grain. Looked more like the Midwest from Google Earth.

Yes, it is true. God made boobs as a visual barrier to our stomach. With that removed, I was forced to see what a serous lack of self control of sweets had done to my waistline. Well, the waistline I used to have. I looked more like a lumpy telephone pole. Combine that with the poorly stitched breast area, I was ready for my photo shoot for Sports Illustrated....June, July and August. Not!

I dried off and decided that there was another thing God gave us aging divas...she gave us the gift of poor eyesight. As I have graduated from readers to full time eyewear, I realized that without my glasses, my stomach and breasts didn't look half bad. Yes, that means they looked half good, blurry, but half good. Mind you, I said half and that was with glasses off, squinting a little.

Thank you God for poor eyesight as we age. Surely God must be a woman as a man wouldn't have thought of that gift.

I smiled and got dressed. I was clean, half blind and half deluded.

Yes, I was getting back to being me again.

Reconstruction Under Construction

So I got my last fill a week or so ago and am somewhere between a C and D cup. My extenders are rock hard and feel like an over filled waterbed mattress. They are also right under my chin (or they feel like they are) as I never realized how saggy my former breasts truly were. A bit like two long rolls of dough pointing at my shoes. Yes, not a pretty picture.

I still have the two tufts, one on each side where the surgeon stopped removing tissue. Looks like I am missing a button as if I were pillow or couch cushion with the button missing from the tuft. The plastic surgeon said she would liposuction the extra out so I won't look so deformed with bulges here and there and then there's the two round mounds that are my breasts. Honestly, they are ugly with scars criss-crossing, but I tell myself they will heal better the next time and won't be so noticeable. Right...

So my new boobs will be installed on December 20. Last year I had a colonoscopy on Christmas Eve and this year it will be a new set of ta-tas. Makes me nervous about next Christmas.

I still try to make jokes to make others laugh. When my long time friend called me to tell me her mother had the same diagnosis, I made her laugh about my situation. It made her feel better. Her mom is luckier than I as she can have a lumpectomy and doesn't need to go through this radical of a procedure. Her road will be hard, but if I can it less frightening so be it.

Making her laugh made me feel good. Perhaps that's my real end game in all of this--to let others know it's ok. You'll be all right. Keep smiling and nothing can tear you down. Make lemonade. Hell, plant a lemon grove.

I'm looking forward to the pain going away, being able to get out of bed and not feel the ice pick in my side from what I suspect is nerve damage. Raising my left arm with any pressure creates stabbing pain that truly debilitates me. I want it gone.

Patience.

Until then, there are a pair of round saline boobs with my name on them. I'm looking forward to meeting my new set of twins in December.

All Over, Sorta

It's been awhile since I've written. Byt he time, November had rolled around, I had pretty much had it up to here (my hand is over my head) with my mastectomy and my loss of the twins. I figured no one really wanted to hear about it anymore even though it was cathartic to write, I didn't want to drag it on any longer.

I was reconstructed right be fore Christmas and had the encore performance of the drains for 10 days. Love looking like a Slurpee with crazy straws attached to my sides (I say sarcastically). Before the surgery, my chubby surgeon reminded me that I was no slim Lizzy and would require liposuction under my arms. She reminded me every week as if I didn't realize by looking in the mirror each day that I was indeed, a bit robust.

I was in for one of my weekly appointments when she reminded me again that I was "fat" and would need lipsuction. I finally had enough. "Maybe we can both go on a diet ." She was silent. I think it may have dawned on her that she was no slim Lizzy either. Anyway, I think her tongue has bruises from biting it the next time I was in.

I was reconstructed and now I have round, dough-like breasts with no "nipplies." I decided tattooing nipples was really a waste of time and besides, I can weird people out if I am a contestant in a wet t-shirt contest. (Get it?) And really, who cares? My days of being a swimsuit model are over and I seriously doubt nipples are an issue in the dark.

It is pretty strange getting used to though. The scars that criss-cross your chest. They slowly go away, but they are stiff, rope like and some parts don't fade. The saline implants don't feel like they are mine, but rather more like a heavy, lumpy garment attached to my chest. It's hard to explain. Parts of you are numb. Parts have little sensation. No matter how much I try to joke about them (which is my release), they aren't me, but more like something foreign under my skin.

I do joke. It's what keeps me going. I know that it makes it easier for others, too. But really, what is there to say? I'm sorry? Pity is thoughtful and quick to the lips, but not needed. We are survivors and being strong is all you have when parts of you are invaded and dying. Strength is from within and how you create and cope and manufacture that strength is all that matters. It's what keeps you going.

I've had some time now to reflect. I know I am changed forever, but to those I love, I appear the same. I'm stronger now. I know not cancer or anything else will get the best of me. It was a speed bump in my life, nothing more. I won't give it any more credence than that as it does not deserve it. I won't be defined by something tragic. I will though be defined by being there to support other women facing the same ordeal and hopefully, be of some inspiration and if needed, a shoulder for tears or as support to rise above.
Overlake Hospital

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Comments (29)

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Seattle Goddess, thank you for your update. I must ask, have you written a book by any chance? If not, I think there's one with your name on it calling you!

Glad you got the twins but sorry they don't quite feel like a part of you. Hoping you feel some improvement over time. Did you end up getting lipo on your arms? Pardon my ignorance, but what do your arms have to do with your healing chest? 

I'm so grateful you have your sense of humor to help you and others cope. It's truly a gift!

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It wasn't y arms, but my sides from the breast beneath the armpit to the back....it's also called "back fat" -- the stuff that bulges out when you wear a bra. She sucked mine out and frankly, she could've kept going -- stomach, toukas, thighs, and the waddle under my chin!
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No, I haven't written a book, but I have thought of it....if laughter can help someone else get through this then awesome. :)
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I think you should seriously consider a book SG. I haven't heard of many women that can carry themselves and others through breast cancer and reconstruction. ;)
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I just might. Thank you.
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Another great update, again putting into words just how I feel. That must be a sign of your ability as a writer, the way your reader can connect to you. I haven't updated my story, but am also finished to where I am happy to stop messing with my body - no nipples, but like you, still finished. I find that the silicone, having only a thin layer of skin over, often feels very cold. This is the main reason they feel so foreign to me, being a different temperature from the rest of my body is just a reminder they are not made from my own flesh. But still, I feel better with the pretence...
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I know what you mean. It's hard to express how it feels. I suppose with time the oddity of them being beneath your skin slowly goes away, but the numbness is more difficult to get used to. My husband will poke me and I don't even feel it. It's become somewhat of a game. Thanks for sharing with me, Auntie-shop. I really value your messages.
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Did you get your new set of twins in December? We'd love an update. Hoping you are well!
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Waiting on the result of your twins!!!
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Hi, I was diagnosed with DCIS October, 2013. I am having a bi-lateral mastectomy with reconstructive surgery. I had a PS consult in November, and he will not do the surgery because of my depression. I will be seeing a 2nd PS this month. This is really, really worrisome. I am grateful to have read your journey. I like to joke also, but end up crying too.
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I had a mastectomy the 22 nd of May and am doing well. There is a lot of pain involved in this and reconstruction, but loving yourself for who you are, what you stand for and the support of family and friends make things come full circle . Instead of asking yourself "Why me?, ". Well, why not. Good luck and wear your scares as badges of honor, that's what mine are. Love to a fellow warrior!!!
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Sorry about the spell check!! I guess that's part of my humor. 6/10/14
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Hey Beachmaddy, your supportive comment in the community here is greatly appreciated by many. We would love to follow your journey and hope you'll start your own review soon. It would be great to see how you're progressing. Wishing you the best!
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You rock! My scars are more like a patchwork quilt....I figure I'm a human cabbage patch doll! Sorta. The best thing about a mastectomy is that you get to buy all new lingerie. Not having Nipples is a bit wierd getting used to, but I figure I can use a Sharpee and draw happy faces, stars or even buttons that say "Start" and "Finish." Gotta have a sense of humor or life it too tough. BeachMaddy, take special care of yourself...you're part of an elite army of survivors!
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I hope you are all right. Your doctor said you were depressed? I wonder if he got his bedside manner where my doc did--out of a cereal box? Geesh, you get diagnosed with breast cancer and you aren't supposed to get depressed? That's like getting a cut and expecting NOT to bleed! Great surgeon! I hope you found someone with empathy and are well now. Prayers are with you, my friend!
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We'd love to hear more about your story @Chartruce. Hoping you've had a successful reconstruction surgery.
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I just want to give you a great big hug!!! You are so brave, and wonderful... my gosh, I would have been crying a long time ago, so glad you released some tears, as it really does help. Aunti-shop nailed it, you are an amazing writer, you can just feel your words, I look forward to your updates, what an inspiration you are!

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OK, strange comment but you are a brilliant writer! I loved your story because it was just so funny and sad and familiar, you put into words a lot of what I feel. I had it a bit easier than you, my drains were out quickly and I've really had no problems in the 9 weeks since I had the mastectomy. I started out just being very positive and joking about 'whipping off my boobies, no sweat - had my babies, finished with them anyway!'. Now, after all the big bits are out of the way, I'm left just shocked that really, REALLY, I have no nipples, no feeling and basically no boobs. They look kind of ok, and they will improve, but looking ok and feeling ok is a bit different. Gosh, how did that happen?
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I just finished reading her update and you took the words right out of my mouth! She is brilliant writer :) 

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I know. My chest looks like a quilt sewn by a crack head. It will get better so they say, but the best part is you're alive. I remembering telling my husband that he really never played with my girls that much so he won't miss them. But when I get my Barbie boobs (sans nipplies), he may want to meet me in the playground again! I know they won't be better or that he will pay more attention to them as I really will have no feeling, but it's something to look forward to. It's a way to smile. We just laugh. It's really so much better than crying. Hang in there, Auntie-shop. I'm cheering for you. :)
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But most important, they may have no nipples, they also have no cancer and are healthy!! Congrats!!!
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You go girl!! Another warrior!!!
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Please keep us updated & let us know how it all turns out. Thanks so much for sharing your trials! I'm here rooting for you. Hang in there!!
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I just read your story, thank you so much for sharing something so intimate to you. You took this on like a champ, what an inspiration you are, we are so proud of you! Wish you lots of happiness.

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Thanks, Eva. It's not over, but hanging in there. Seems like I'm in a "Lifetime" series. Have taken a couple steps back which I'll share after a procedure today. Still making lemonade... :) Thank you for your kind words.
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