Shannon’s Journey 6


Shannon 601


Shannon’s looking pretty gosh darned okay in this photo which was taken only twelve days after her surgery. Here she’s in Dr. Janiga’s office, waiting with Shelby, Vesta and me to get the plastic surgeon’s opinion about how everything came out.

But we’re all confident everything went just fine and that Shannon’s recovery is gonna be as smooth as possible.

We all hope so anyway.


Shannon 602


Shannon 603


Shelby’s confident too. Me, I got my fingers crossed. Toe’s too. How could I not?


Shannon 604


This is a chart of how much blood, puss and yuck drained into those plastic balls.


Shannon 605


And here you can see where the drains are sutured into Shannon. And when I saw these, I right away thought back to Shannon in pink, in the waiting room, wearing that smile like everything was peachy keen okay.

No, when you got drains sewed into you, everything is not honky dory. It’s not.


Shannon 606

Here is another view of the drains.

Shannon 609


Here she’s just learned those drains are coming out. Yeah!

And this is a small first step toward victory in a journey that’s gonna be long and hard. And as for hard, one would think the surgery would be the hardest part. But not so, it’s only the beginning of the road to recovery, with the hardest part yet to come.


Shannon 611


And here she’s being wrapped up to keep the pressure on her breasts to help keep the swelling down. She has to wear this ace bandage for a couple weeks. Then Dr. Janiga will start gradually filling the expanders.

I asked could she go Dolly Parton, but both Shannon and Dr. Janiga said that wasn’t gonna happen.

I was only kidding, but you know, it’d be different.


Shannon 612


And now she’s just about ready to go home, with a confident smile. She almost looks like she can fly.


At the turn on the millenium, when Vesta and I lived in the Caribbean, my cousin Johanna learned she had breast cancer and after she’d gone a good way into her journey, a girl named Rosa, who was doing a science fair project on breast cancer, emailed her with questions.

I wanted to know what Johanna had gone thru, maybe for a character for one of my stories and she sent me copies of the messages between herself and Rosa. I saved them all these years and I asked Johanna and Shannon if I could use them here and they said yes.

I wanted to use them, because Johanna story and Shannon’s story are different versions of the journey so many women have to face.


Messages between Johanna and Rosa.

From: Rosa

To: Johanna

Sent: Sunday, January 07, 2001 4:02 PM

Subject: Breast cancer

Hello! My name is Rosa. I am a really good friend of the Murphy's. They told me you would probably be okay with me asking you some questions on breast cancer. I am doing my science fair project on the newest drugs out. But I thought it would be nice if I had the point of view from a victim. If this is okay please write back.

Thank you so much,

Rosa


From: Johanna

To: Rosa

Sent: Monday, January 08, 2001 7:06 AM

Subject: Re: Breast cancer

Yes, Rosa. I'd love to help you with your science fair project. My doctor's are in portland (about a 6 hour drive from Baker City, where I live), and I will be gone Thursday and Friday of this week. So, it makes it a busy week. iIll try to do more this weekend. Hope that's not too late.

I didn't realize until i got breast cancer, how many women have survived. I had only heard of the women who died.....Erma Bombeck, Paul McCartney's wife and local women. It was such a joy for me to see all these women "come and of the closet" and reveal to me that they too had had a mastectomy. I think it's something women have kept to themselves too long. the Mayor of Portland, Vera Katz is a breast cancer survivor and she now has a web page out for women about breast cancer. I thought that was great, but my oncologist (cancer doctor) was afraid it might be disheartening to women who weren't so lucky and had to have a mastectomy  (she just had a lumpectomy and radiation therapy). Interesting to see the different points of view.

I'm not too sure what you want. I'm thinking it may be my experience from start to finish? I'll try to write more tomorrow with that in mind.  

I have lots of web pages about breast cancer if you're interested.

Have a great day, Rosa!

Johanna


From: Rosa

To: Johanna

Sent: Monday, January 08, 2001 5:16 PM

Subject: Re: Breast cancer

This is so nice of you to do! I really appreciate it. Yes, I am looking for what you went through from start to finish. emotions physical and mental, and if you don't mind, I also want to know what treatments you under went.

Thanks!

Rosa

ps. We have about a week till our paper part of the project is due. Plenty of time



From: Johanna 

To: Rosa

Sent: Tuesday, January 09, 2001 7:06 AM

Subject: Re: Breast cancer

Okay....here we go!  Might have to do it in segments, but we'll get it done.

I had my yearly mammogram in August. a week later I got the usual letter from the hospital telling me my results. I didn't even open it until I'd read all my other mail, because I knew it would be the usual normal. I was somewhat surprised that I had an abnormal result and was to make an appointment to go have further testing. I called the x-ray department at the hospital and set up an appointment for a few weeks later. At this time I wasn't worried at all. A little annoyed by having to be inconvenienced.

When I went for my "further testing" the radiologist came in and explained to me that I had some microcalcifications on my mammogram and that in 10% of these cases they found ductal carcinoma along with it. He emphasized the 10% and he took more mammograms to pin point the spot. He said I would need a biopsy (done as a day surgery in the hospital). He was wonderful, spent lots of time with me and explained everything. At this point I was mildly concerned...but 10%....really, why worry.  Another bother.

I talked to the surgeon who would do the biopsy a week later and we set up the appointment for October 11th. Everything went well. Came home, rested and went to the gym the very next day and ran three miles on the treadmill.  

I saw the surgeon on October 17th (the day before my 51st birthday) to get the results, which I knew would be normal. The poor surgeon. He was beside himself. He, too, expected normal and was shocked that not only did I have cancer, but it wasn't even the type that is associated with the microcalcifications. It was lobular carcinoma (the lobes at the end of the milk ducts). It was very small....6mm. we were all shocked as not only did it not show up on any of the mammograms, including the ones I had for "further testing", but the ones I had the morning of the surgery, so they could mark the spot with a needle to show the surgeon where to go. Also, it was never felt on any of my breast exams. Scary! He told me my options. Lumpectomy (which i'd just had with the biopsy), radiation OR a modified radical mastectomy (where they take the breast and some of the lymph nodes to check for abnormalities in them) and tamoxifen.

He told me there was a 40% chance of this same type of cancer (but not a metastasis, or spreading of the same cancer) showing up in my other breast. He then said, i shouldn't tell you this (I believe because doctors nowadays never tell their patients what they should do, but just give you the options and let you decide), but i strongly suggest you have both breasts removed. He said, you'll come in for your breast exam and mammogram and they'll be normal and I'll say to myself, "I don't know if she has cancer", as they never found it on my left breast, except by accident.

He said that it may not be found until it had metastasized to the brain and by then...too late. He told me that I was young and healthy and had many good years ahead of me. Why take that chance. I was AGHAST that I should have to have a perfectly good breast removed. Told him i'd talk it over with my husband and he said... "you're husband isn't going to know what to do" (which of course, he was right!). 

And then I said, “Well, let me think about it.”

And he said, "While you're thinking about it, let me set up appointments to see a thoracic surgeon and a plastic surgeon who I trained with in Portland. They're excellent. You can talk to them and that will help you make your decision." He also mentioned that they were both female. As I left I thanked him for not letting me leave the office until we'd come to a conclusion.

My first instinct was to bolt and get OUT of there. If he hadn't persevered, I would have. I had to drive back to Baker City (45miles) by myself.  That was hard. I thought...WHY did i come here alone!  (Well, because it was suppose to be normal!)  Funny thing is, I was very upset when I left the office, but had to return something to Wal-Mart in La Grande (where the surgeon was) before I went home. I went to Wal-Mart, returned the phone and shopped for about 30 minutes...I was fine. Oh, the healing powers of shopping!

My poor husband, he was shocked when I told him. He felt badly for not coming with me. He'd also nursed his sister, who died of ovarian cancer (two years ago) the last four weeks of her life and that's all he could think about, was me in that condition. The next day was my birthday...gloomy day.

I should tell you that I work for an ophthalmologist (eye doctor...M.D.) and I stopped to tell him the results. He was so helpful. And I also talked to his wife. They were and have been wonderful. They've given me unbiased opinions on what to do. I really appreciate it. He went home and read everything he could on lobular carcinoma and came back and agreed.... drastic as it was, that I should let them remove the right (normal...well, that was the other thing, how did we know it didn't already have a tumor?) breast.  

Well, i've got to run. now, Rosa. We have a big day at work today and i'm trying to get everything reviewed and the surgical suite ready to do some refractive surgery...big procedure to do in our office and  not at the hospital. I'll write more tomorrow.

iIm not going to check for spelling or grammatical errors, as i’d NEVER get this out! so, please forgive me. also, I'm just writing all of it and you can pick and choose what you want. 

Oh, by the way....when i had the biopsy I was more afraid of the darn needle (or guide wire) they were to stick in my breast to mark the spot (otherwise, with no lump, they could feel, the surgeon wouldn't know where to go). I knew it would be uncomfortable. But, as it turned out, it was too close to the surface to do and they marked it with a BB! what a relief. the surgery took about 30 minutes. I felt fine afterwards, we went out to eat and to Walmart again! (we bought a robe for me, as we knew i'd be lounging around....but, i didn't!)

Now, I really have to go. The best part is to come. I’m having reconstruction and I'm absolutely amazed at what they can do. I've seen pictures of women with reconstructed breasts and you can't tell them from the real ones. It's truly amazing. Right now I look like frankenstein, but, it just takes time.

I'm really worried I went on and on too much....sorry. But, you can chose what you need and ignore the rest.

You have a wonderful day, Rosa!

Johanna


From: Johanna

To: Rosa

Sent: Wednesday, January 10, 2001 6:52 AM

Subject: Saga Continued

Well, lets see. Where was i?

I saw the two surgeons in Portland the first week in November. iI's funny, because if Dr. Hamre (the surgeon that did the biopsy in La Grande) hadn't brought up seeing a plastic surgeon for reconstruction, I never would have done it. Everything was in a blur. I just wanted to be cancer-free, I didn't care what iIlooked like afterwards.

Dr. Kathleen Waldorf is my plastic surgeon. I saw her first and visited about an hour. she agreed with Dr. hamre's suggestion of having both breasts removed. She said the added benefit was that it was easier to match the two breasts, if they were both "reconstructed" ones. As far has having reconstruction, she said that a lot of women find the prosthesis uncomfortable and unnatural looking and that women that don't have it done have a constant reminder of what happened to them every time they look in the mirror.

I think that reconstruction would have been a much higher priority for me if I were to have just one breast removed, but with both gone, I'd at least be bilaterally symmetrical and not lopsided. Have heard of several women who had only had one breast removed wish they'd have both. The prostheses are just too much trouble. I, too, would opt to not wear prostheses, if i weren't having reconstruction.

In fact, if anything should go wrong with my implants, that's exactly what I plan todo. Dr. Waldorf assures me that I won't look any worse than if I hadn't had reconstruction and probably better as there would now be more skin to work with.

There are several types of reconstruction. One way is to use the abdominis muscle (TRAM) flap procedure they leave the skin with muscles, fat and blood vessels still attached to the abdomen and pull them through a tunnel under the skin between your abdomen and chest. Another "flap" procedure is to use the latissimus dorsi muscle from the back to make the breasts.

These are usually first choices, as they don't require any artificial implants. The TRAM flap, actually narrows a woman's waist...nice benefit! The downside is that you're damaging good muscle and tissue and recovery is longer. You have to have enough fat to build a breast, too. I didn't qualify for these, as i didn't have enough fat and i have a vascular problem "Raynaud's Disease" with vasculitis, that would compromise the blood flow to the transplanted tissue. Increasing my failure rate. I'm kind of glad I didn't qualify. The surgery for both breasts would have been ten hours! And  recovery much longer.

I am having implants. What the surgeon does is after the thoracic surgeon (in my case, Dr. Mitzi Miller) removes the breasts and lymph nodes, the plastic surgeon takes over and cleans everything up a bit and puts tissue expanders underneath the muscles in the chest. Reconstruction is done at the same time as the mastectomy, saving the patient another surgery and also has the psychological benefit of having "something" there after the breasts are removed.

In my case, Dr. Waldorf put 100cc's of saline in the expanders at the time of surgery. This started stretching the skin and muscle, making room for the future implants. I go every 2-3 weeks and have 60 cc's of saline added through a "port" in my expanders. They can feel where the port is and then use a magnet to mark the exact spot for the needle to enter for the injection.

I had small breasts to begin with and didn't want any more than mother nature gave me to begin with, so i've only needed a few expansions. When they put the saline in, you can immediately see the results. Your chest muscles feel really tight for about a week and then it's fine. I get my last expansion Friday the 12th. Then i go February 7th to have the implant surgery. It'll take about two and a half hours and I will be under a general anesthetic at the hospital in La Grande. Unlike after the mastectomy, I won't have to spend the night at the hospital.

As they have to remove the nipple when they do mastectomies (it's a milk duct), they make a new one for you six weeks after the implants are put in. this is done under a local anesthetic at the doctor's office. Then after it heals they tattoo on an aereola. My....they think of everything!

Well, how do I feel about all this? I really didn't think about it at all until the expanders were done. I just did what i was told. After surgery when I first looked at myself, there was a slight bulge where my breast should be. I think that helped my recover quicker psychologically. 

I really don't feel like I've had them removed, just rebuilt. I'm sure I'd have been able to adapt to not having breasts if I'd opted to not having reconstruction, but for now this is nice.

After mastectomy, you don't have any feeling in your chest or underarms. The nerves have been cut and damaged. So, I have to be very careful and not hurt myself when i shave my underarms. They recommend using an electric shaver, but that makes my skin raw. I was beginning to think i'd never be able to shave again, when i tried Nair. that works well. I was afraid it would be too irritating. but it isn't.

I had lymph nodes removed on my left side (because it was the breast with the cancer, they wanted to see if it had spread and was in the lymph nodes...mine hadn't). I now can't have my blood pressure taken on that side or blood drawn from that arm, either. I always forget! I’ve got to be careful. I also have to be very careful about cuts, as your lymph nodes filter out the bacteria, etc and i don't have all of mine.

I could hardly raise my arms right after surgery. But, I've stretched and stretched and now I have full range of motion in both arms. It's painful at first, but not now. I do have these long stretches of scar tissue and ligaments that run from under my arm to the upper part of my arm. I've been stretching these, too, but they're still there. If they don't go away, I wouldn't be able to shave with a blade or electric razor, as i'd slice them.

Glad i found Nair. Even though i was in college during the hippie era, I  just can't seem to let my underarm hair grow...how funny. Dr. Miller also told me to use deodorant and not antiperspirant. I've been doing this for years, as a friend had mention the aluminum chloride in the antiperspirant not being a good thing to put on your skin, so close to your lymph nodes and breasts. Also, the sweat glands are there for a purpose....to sweat! I use the deodorant, so i don't have an odor, but i hardly sweated anyway.

 Well, I've got to run again. Off to work! Have a great day!

 Johanna


From: Johanna

To: Rosa

Sent: Sunday, January 14, 2001 9:30 AM

Subject: Sorry I'm so late in writing

Sorry I haven't written for awhile. We were in Portland Thursday and Friday. My son and his girlfriend came Friday and will be here visiting until Monday, so I'm very busy.

I got 60 more cc's (ml's) of saline injected in my ports on Friday. That's my last expansion. Now we wait four weeks and then I have the implants.I think I said the surgery was in La Grande in my last e-mail, but it's in Portland...oops!

I'm going to have silicone implants. They've gotten a lot of bad press lately, but are perfectly safe. The companies did not do trials before they released them and that left them open for all these law suits. Everyone and their lawyer can't wait to get in on it. My plastic surgeon says they're very safe, my oncologist (cancer doctor) says they're safe and so does the FDA (you could see their web sit on them, if you wanted, too.) They all say that in a year or so, with all the studies they'll be back on the market. To get them, I have to be part of the study. No problem. I figure, I'll get even BETTER care if Im in the study for five years. We use silicon intraocular lenses in cataract surgery in the ophthalmologist's office I work for.  Good material, that silicone.

Saw the oncologist on January 2nd. 94% + 5 year survival rate. Can increase it 1% by taking a mild chemotherapy mix, methotrexate and 5 Fu (fluorouracil). Opted out for it. ( 1% isn't a big advantage for all the disadvantage of chemo. Even though it's mild, it's chemo and it wouldn't be fun). She said one thing I didn't like. She used the "I" word. NEVER use the "I" word in front of me....NEVER, you can use the "F" word all you want, but NOT the "I" word. Guess I knew mine was invasive cancer, as it wasn't "insitu" (now there's an "I" word i like!), but it upset me.

But, I'm fine now. Just have these little setbacks and then I bury my head in the sand again and carry on like there's nothing wrong. And really, Johanna, 94% + 5 year survival rate.....that's great! As the doctor I work for said, I'm cured. He's sure they got it all. Hedge my bets by taking the tamoxifen for five years and forget the chemo.....greater odds of being killed in a car wreck on the way to chemo than the 1% is worth. Amen to that.  

What new drug are you doing your project on? What stage of cancer will they use it for?   

My experience with the oncologist is typical of how i've handled this whole cancer thing. I put up a big denial defense and went on with my business. Amazing, but it works. I truly don't worry about it.. but, now that I know my odds are so good, I don't need to. I've handled it all pretty well, after the initial shock of finding out it was cancer. I have setbacks every once in awhile when the doctors tell me something I wasn't aware of. It usually takes me overnight to get used to whatever they've told me and off I go....head in the sand, again. Good defense mechanism.   :-)  Wonder if other women do the same thing?

I've been hesitant to talk to too many women about it. as, I don't won't to hear horror stories and get upset. I've been doing that since I first heard it was cancer and my oncologist two months later suggested I not listen to a lot of what other people have to say, as each individual's case is different. A woman from my church did suggest I talk to a gal that had a bilateral mastectomy, such as mine and reconstruction. She was great and really helped me through a lot.  

Well, I've got to run to church. More tomorrow, I hope. any questions? 

have a great day, rosa!

Johanna 


From: Rosa

To: Johanna

Sent: Sunday, January 21, 2001 5:33 PM

Subject: Re: Breast Reconstruction

Hey again! well, i have to write my paper this weekend! Thanks for all of the information! I really appreciate you taking time out of your busy day for me. You are so nice, you have made my science project so much more interesting for me (and hopefully my teacher.) Well, I hope the rest of your recovery and surgery process works well! Thanks soo much. If you don't mind, I might write to you again as I am not all of the way done with my whole experience.

I do have one more question, which is kind of personal. If you don't MIND telling me, I was wondering what you eat daily. Not quantities but what you are actually eating. And if it is different from what you ate before you were diagnosed.

Thanks,

Rosa


From: Johanna

To: Rosa

Sent: Monday, January 22, 2001 6:46 AM

Subject: Re: Breast Reconstruction

Good question Rosa. (by, the way, no question is too personal.....just ask.)

I really haven't changed my diet. I changed my lifestyle about 5 years ago and have kept with that.  Jog 3 miles 3 days a week. Weights, 2 days. And long walks on weekends.  

I have a high cholesterol with high LDL, so don't hardly eat meats. eat lots of fruits, vegetables salads and soups. It’s's a good thing I love them! I do drink coffee...it's instant and i have it really weak, with milk and brown sugar. Don't drink pop. I eat some sweets, but not much.  (Kate's mom sent me some Whopper's for christmas...malted milk balls were a favorite of ours in junior high and I've been eating a handful of those a day. but, normally have a cookie or something sweet once or twice a week). One thing I do that is different is that I take a better quality vitamin. I was using centrum silver. Then I went to the health food store and got a very good one that you take 3 times/day.

Hope that helps.

Good luck on your paper, I know you'll do well. Please keep in touch, love to hear from you. I should be around until about the 6th of February, then off to Portland for a few days for my implant surgery.

Did I tell you i was on tamoxifen? No real side effects for me. Had a headache at first. And have vaginal dryness as one would assume, when you don't have any estrogen. There are some over the counter things you can take for that. They seem to help. (Hope that's not too personal for you, Rosa. It's one of the side effects and I debated on whether or not to tell you. I'm comfortable with it. I hope i haven't offended you.)

A friend sent me some info from the New York Times online. Very interesting! Women who suffer from depression are four times more likely to get breast cancer...interesting. Also, hormone replacement therapy makes your breasts denser and they become less dense when you quit it. That was my problem, my breasts were so dense, The tumor never showed. The specialist a woman chooses and the surgeon's preference for the type of surgery to be done for breast cancer, may determine the woman's course of treatment. That's certainly true in my case. I don't regret at all having both breast removed. For many reasons. One of which i never thought of is that I'm now bilaterally symmetrical and that really helps. To have one normal breast and no breast or one normal and one reconstructed would be a constant reminder.

Is your study on the new drug Femara for advanced breast cancer?  Read a little on it in the NY Times article.

Have a great day, Rosa!

Johanna


From: Rosa

To: Johanna

Sent: Monday, January 22, 2001 12:41 PM

Subject: Re: Breast Reconstruction

WOW! thanks for getting personal. I have no problem with learning anything about breast cancer. If it will help my project let's learn it! Well, I was going to do some research on tamoxifen and one other new drug, but I decided that I probably wouldn't have the time or connections to go very deep into the experiment I wanted to do, so I am going to try out some surveys about diets and heredity. I will send you one, when I figure out all of the questions.

Thanks for being so open!

Rosa


From: Johanna

To: Rosa

Sent: Tuesday, January 23, 2001 6:23 AM

Subject: Re: Breast Reconstruction

Can't wait to see the survey. After I wrote to you yesterday, I realized that I am changing my diet slightly. Eating more broccoli, cabbage...etc. and green tea, citrus fruits. Things I love and ate before, but now putting more of an emphasis on them. A friend sent me Dr. Andrew Weil's SPONTANEOUS HEALING. His suggestions on diet are pretty common sense. Just made me rethink a few things. might try a few more "organically grown" foods. 

I lost about forty pounds six years ago (took me several years) and I wonder if the chemicals that are stored in fat...like DDT and estrogen that are released, when you loose weight, had any bearing on my cancer?  

On the other hand, I think that my diet, exercise and good health are the reasons my cancer hadn't spread.  Hard to say.

Well, rosa, you have a zippity do-dah day!

Johanna


From: Rosa

To: Johanna

Sent: Tuesday, January 23, 2001 6:53 PM

Subject: Re: Breast Reconstruction

Wow! I am really glad that you are eating all of those healthy food, because it really ties into what I have studied! I don't think I will be doing my survey for a couple of days or so. So, sit tight. hahah

Well, have a really good day!!’

Rosa


From: Johanna

To: Rosa

Sent: Wednesday, January 24, 2001 6:16 AM

Subject: survey

Waiting with baited breath!


That was a decade and a half ago. Johanna is doing fine. Well, physically. Her husband passed away and that was tragic and sad. Life deals us curveballs, but we go on. Johanna is a survivor.

 Shannon is too. She survived this once, she will again.


Shannon 614


Shannon 616
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