Saying Goodbye to Someone I Didn't Know

Sea Glass -- Sherri Fillipo collected it.

First, I'm sure you'd like an update. My status is unchanged. I still plan one more surgery and hopefully walk away from treatment for a time, but I've been hampered by a much more mundane issue: my knee seems to have big problems. I've been trying to recover from a torn menicus and root, and a bad tendon, per my MRI. All I know is, it's nice to get on the plane first when the walk down the jetway is such a challenge. I put over 3000 miles under my belt hobbling with a brace and a cane, but I seem to be on the mend.

I'm posting today because we lost another reluctant warrior, and I feel she deserves a salute. You've noted that I put Sherri Fillipo and her blog, Living and Dying with Metastatic Breast Cancer, on my blog roll. Her honest and compelling blog described her journey with metastatic breast cancer.  Her words had impact; she helped me understand the concept that cancer that never leaves the breast never kills anyone; that the true survivors are those who have metastatic cancer.  (In that respect, *I* am not survivor. I am in limbo, and content to be there.)

I learned to share her unhappiness that so little is being said or done for the metastatic cancer survivors. Her grace and gentle spirit came shining through, despite her race with the inevitable. I knew what her outcome would be, and I like to think that I walked behind her on the path for awhile, supporting her spirit, even though she did not really know I was there.

She passed on April 10, 2016.  May she and her dear family be blessed with peace.  Thank you, Sherri.

When I began this journey decades ago, I knew I would make friends I would eventually lose, at least, here and now. The first person I met through a chat forum died just a few months later, and I began to wonder why her and not me? I was clearly on a different path than she; I was getting better and she was growing worse and worse. When she shuffled off the mortal coil, I wept for her, even though I don't now remember her name -- only that she loved to walk her dog on the beach in Oregon, and she had a friend who posted when she was too sick. Technology, as primitive as it was back then, allowed me to connect with someone states away, and I was touched by her life.

Sherri is another such soul. I'd never met the woman. I found her blog in an article listing best blogs for breast cancer warriors. I followed her for more than a year. I saw her farewell post, then an update. And she, too, has moved on.

I will keep my eye out; I will look for another nice blog where you and I can learn we are not alone in our journey. In the meantime, let's take a moment to remember a profound soul:

"The cure for anything is salt water -- tears, sweat, or the sea." - Isak Dinesen
Let me know your thoughts.

What's it like, you ask?

What's a mastectomy and an oophrectomy like?

It occurs to me that you might like to know how mastectomy and oophrectomy (ovary removal) procedures go. I thought I'd go ahead and share my experience with you, in case you ever need to walk this path.

The day of surgery, they gave me a little Versed to help calm the anxiety (which I rarely feel in any surgery) but that really releases the endorphines. I start talking every time. Hubby tells me I started firing off a list of things to do after my surgery during the first mastectomy. I honestly don't remember this time at all. They started the drugs, and wheeled me away, and I woke up five hours later -- but it seemed like only a few.

I was on Delaudet, and nice opiate that they give to manage the pain, but it made me sleepy. I was awake long enough for them to tell me everything went well and that everyone thought I looked great. They were all very positive.

You squeeze this into your fist, then
close the valve, creating negative pressure.
The other end is placed near the
surgery site well under your skin.

I remember expanding my chest with air, and feeling relieved. It was gone. Another two sources of worry, out of my life.

So, you ask, what about the incisions?

I awoke with large surgical pads over the incisions for my breast. I couldn't see anything under it all, but I really didn't care this time. I knew I had a large incision, all stitched up, starting from about my breastbone to under my armpit, pretty much along the axis of my former breast. I could feel the JP drain under my armpit. The drain collects lymph fluid and blood from the incision site, and prevents seromas, with are big, painful swellings that can't drain because of the injury done to the lymph system.  If a drain isn't installed, the fluid has to be removed with a needle. The drain doesn't hurt if you can avoid moving it suddenly.

To keep it from tangling, we pinned it to my lovely hospital gown.  Meanwhile, my GYN surgeon explained that I had three holes in my belly that were superglued together, no fuss no muss.  I had also had quite a few samples removed, so I was bleeding mildly. I was a mass of tubes (including the IV pole) and wires.

The gynecological surgeon would have sent me home, but the mastectomy surgeon likes his patients to stay overnight. That harkens back to the protests over drive-through mastectomies. As American healthcare started to move in the direction of outpatient surgery unless absolutely necessary, women complained that they were being sent home from mastectomies far too quickly and callously...they called them "drive-throughs." Insurance companies were pressured, and laws passed in the late 90s: no more drivc-throughs. So, I spent the night.

I slept quite a bit, but I had to wake frequently. Now, I could have asked the nurse to help me to the restroom, but I couldn't wait. So, two or three times, I awoke, unplugged the IV pole from the wall and untangled the phone cord, wrapped my JP drain to avoid tangling and pulling, and headed to the nice bathroom. It was quite an effort.

This hospital stay, I couldn't eat anything but a liquid diet, though, so I didn't get to enjoy the hospital's great food until the next morning.

I headed home the next day, and I was glad to go. I started eating -- soft foods the first day -- and I have a few restrictions, like not lifting more than 10 pounds. I soon realized: that means no shopping cart, and right before Christmas. In fact, I overdid one day doing just that. I have to take it easy, rest more frequently.

I am recovering slowly, but my sleep was impaired for a while, I'm pretty emotional and I have that jangly feeling all over the incision. I'll get better, and I will be ready for work when I go back next week...I just can't lift anything.  I'm really anxious to have the jangly nerves settle down. My abdomen already feels better.

I've come to realize that I go through a few weeks of emotionality, a sort of PTSD, after each surgery, so I'll have to reconnect with my therapist.

Surgery: easy peasy. Well, ok, not really, but it's fine. Really.

How was your experience? Feel free to comment here, on Inspire or Facebook.

New Year, New Normal

Keep Walking

Thank God it is 2016.  I am so glad last year is done.  It has been 17 days since surgery, and I'm making some progress:

• They removed the drain after the first week. 
• The stitches were removed the second.
• I feel fewer tears and pulls in my abdomen.
• All of my pathologies are in.

They were interesting. All of the tissues sampled were benign, including breast, ovaries, tubes, and the polyp on my colon -- all except for the endometrium strips. The report indicated that the sample was too small, but that one tumor marker (p53) was overexpressed, but another tumor marker wasn't present. The pathologist suggested that it be tracked.

No, no, no.

I don't want to track anything else. I want it out. So, I'm not happy. We should have taken the uterus when indicators started to go negative. I will be discussing this with my surgeon next week. The uterus has got to go. If he doesn't agree, I'll be getting a second opinion.

I'm going through all of this new drama because of the Tamoxifen. Effin Tamoxifen.

My recovery is going well, I'm happy to report. I'm ready to be all healed, but I still have jangly nerves under my arm and around the incision. I can't push a shopping cart, lift or do things with my abdomen. I can walk, but I can't dance yet. (Did I mention I love to dance?)

I also have to figure out what to do about oncology. My trust is low to zero that there is another treatment solution for me. My bones are too brittle for the other hormonal treatments like Arimidex, and my heart probably won't stand the assault, either.

I think I may be done with everything for a while. I may have to just wait and see what shows up. I just don't think I have any reasonable options left.

My only other dilemma: to bra and breast form or not? Right now, my little flat chest is fine.

Update: The GYN Surgeon does not know what to make of the data from my endometrium samples; they fit no category so they have no protocol. The tumor board will review it.

Yeah, it is coming out.

Let me know what you think, either here, on Inspire.com or Facebook.

2016: A Really New Year.

Thank God it is 2016.  I am so glad last year is done.  It has been 15 days since surgery, and I'm making some progress:

• They removed the drain after the first week. 
• The stitches were removed the second.
• I feel fewer tears and pulls in my abdomen.
• All of my paths are in.

They were interesting. All of the tissues sampled were benign, including breast, ovaries, tubes, and the polyp on my colon -- all except for the endometrium strips. The report indicated that the sample was too small, but that one tumor marker (p53) was overexpressed, but another tumor marker wasn't present. The pathologist suggested that it be tracked.

No, no, no.

I don't want to track anything else. I want it out. So, I'm not happy. We should have taken the uterus when indicators started to go negative. I will be discussing this with my surgeon next week. The uterus has got to go. If he doesn't agree, I'll be getting a second opinion.

I'm going through all of this new drama because of the Tamoxifen. Effin Tamoxifen.

My recovery is going well, I'm happy to report. I'm ready to be all healed, but I still have jangly nerves under my arm and around the incision. I can't push a shopping cart, lift or do things with my abdomen. I can walk, but I can't dance yet. (Did I mention I love to dance?)

I also have to figure out what to do about oncology. My trust is low to zero that there is another treatment solution for me. My bones are too brittle for the other hormonal treatments like Arimidex, and my heart probably won't stand the assault, either.

I think I may be done with everything for a while. I may have to just wait and see what shows up. I just don't think I have any reasonable options left.  My only other choice: to bra and breast form or not?

Let me know what you think, either here, on Inspire.com or Facebook.

There, it's done!

There, it's done.

I had the mastectomy. I had the salpingo-oophrectomy.  I'm out of the hospital and on the mend.

I keep saying, surgery is my jam. I handle surgery, no issues. I just do. I've had zero pain meds. I know! But it's just a little sore, not a big deal. Not like chemo, not like so many things. It all went like clockwork and now all I have to do is recover. I did all of this because of my bad genes, but there was nothing that said "cancer." So, this went easily.

I took my medication the night before. I was worried about it, but my doctor told me to keep a positive attitude: guess what? She was right. It was a little crampy, the misoprostol. Not a biggie.

Oh, my IV pole is my friend.

I went into the hospital with the wonderful hubby, who himself is still recovering from his surgery. They prepped me, gave me happy drugs and wheeled me away. Actually, I don't remember getting wheeled away. I was on drugs.

I woke up five hours later. I was told one of the doctors was delayed, so it took longer, not that I noticed. From there, I slept and wrestled with the IV so I could get to the bathroom. That was a pain, but it went fine too. I managed all by myself all night. I ate a liquid diet. I slept and posted on Facebook and slept some more.

I have three stitches in my belly, including my belly button, and a big bandage across my chest. I have a drain I get to tend. All of this is fine. I'm relieved to have the weight off my chest.  I now have a boy chest.

I have a long list of pathology findings coming:

• My breast tissued will be examined
• My ovaries and tubes, the same
• There were samples taken during the hysteroscopy (they used a scope to examine my uterus)
• There was a little glioma on my colon

So, I will have interesting findings coming. More cancer concern, but not a scare. Not yet. Let's just relax and recover for a few days. I do have pain meds, if I need it, but...I'm good for now.

Thank God.

No One Pays Attention

How long have I been telling you I'm heading for surgery? Two months? Three? Why is everyone surprised then?

Everyone I've mentioned this to this week, even people I know I told personally, not just through this blog, seem to have forgotten. Apparently, they don't read this, and they must be tired of hearing me talk about myself. (Lord, I am!)

A single-breasted Amazon woman -- not going to be her anymore!

As a refresher: next week, I'll have that second mastectomy, along with a "salpingo oophrectomy", tubes and ovaries, both coming out. (You gotta love Greek -- Oo is the Greek word for "egg" and an oophor is an egg bearer. Salpingo means tubes or trumpets, but I'm sure they meant tubes this time. The "ectomy" part literally means to cut out.)  If you also remember, I will have my uterus looked at, because it's showing signs of a toxic reaction to my Tamoxifen regimen. I would not be surprised if I wake up without it as well, but that's not what the doctor is saying.

Yep, more fun over the holidays with stitches and drains and wound care. I'm ten days out from the anniversary of my first chemo, and I'm heading to the hospital again.  At least the food is really, really good there.

To add to it, my company separated officially from it's former parent, so our insurance changed just about a week ago. I've had to scramble to make sure that I'm covered, that the deductibles and out-of-pocket costs (over $5k) will still apply -- they nearly didn't.

I had to hit the ground running on this, because my dear hubby needed surgery, too, this time for his shoulder. He'd had a rotator cuff repair three years ago, and the recovery was long and difficult for him. Fortunately, this time it went more smoothly. He's going to recover quickly.

Fortunately, because our HR was on it, things went well with the insurance,. Thanks, HR Leader Lori. You saved much in the way of drama for me. I am most grateful.  Fighting hospital bills while recovering should be considered unconstitutional...cruel and unusual punishment!

I took a lot of encouragement from hubby's surgery going smoothly; maybe mine will as well. Maybe I'll recover very quickly, too and I'll find that certain issues, like that cyst that caused and infection, are gone.

One thing right out of the gate: I'll be balanced again! Right now I look like an Amazon warrior, who cut off her left breast to use a bow and arrow more effectively. (You may have heard me joke about being Wonder Woman, an Amazon, because my car is invisible to other drivers -- well, I even look the part now!)

I've had another challenge as well: my blood pressure is just spiking. High. I have no idea why; I've been losing weight, I walk a great deal, I have a decent diet, just a bit high in sugar, but not bad...so what's going on? And remember those heart palps? There's a correlation as well. And I have to grapple this now: they won't perform that surgery if I don't get it down. It doesn't rain...

So, you ask, am I upset about losing body parts again?  Yes and no. I will miss things a bit, but my looks are shot anyway. My once lovely shape (I had a great figure before all of this) is pretty misshapen now, so I'm concentrating on just keeping healthy. I *welcome* the possibility of losing that still troublesome cyst on my ovary.  So, I might be a bit sad that this has to be, but, really, it was ready to go anyway.

Docs, I'm ready. Make the drugs good.

How's your health adventure going? Feel free to comment here, or Facebook or Inspire.com.

Another Cancer? Say It Ain't So! Ok, Probably.

My lucky MSU socks -
I have to wear them or the
Spartans lose against U of M.

When I go for a long period of time without posting, I want you to know it's against my nature. I am sometimes amazed that the training as a journalist I received at MSU (Go Green!) remains with me, always. That means I love language; I love to write and post and create conversation. When I started this blog, I made the commitment to keep that up. 

The cancer journey has lots of twists and turns, and it is difficult to see all ends. Or, really, any end. I don't post sometimes because I don't want to worry, say, my family and friends. This time, I didn't post because the outcome was not at all clear, and I didn't want to worry you, my friends online.

Oh, I had another elephant dance, for sure. This one was pretty intricate, too. Here's the story.

You remember that I have the BrCA2 gene deletion. If you remember, that makes me vulnerable to a host of cancers, most notably breast cancer. It also gives me a strong run at ovarian cancer. So I rallied my surgeons and arranged to have the other mastectomy and a salpingo oophrectomy -- both the tubes and the ovaries go. I can have them done on the same day, same anesthesia. I want to do this for the holidays, so I can just blip out like everyone else does around that time of year, and be back before people notice I'm out. 

Every day is a winding road, right?

That was the plan, anyway.

More Findings

The GYN surgeon wanted an ultrasound of the pelvic area to ensure that I'm good to go. The findings suggested -- not so much. Again. Among the findings:

Uterus > Endometrium

--------------------

A hypoechoic area is seen within the endometrium measuring 3 x 4 x 4 mm.

Remember that word, hypoechoic? That means the ultrasound echoes are weaker, it is harder to see. It is associated with cancers. Uh-oh!

The latest Newsweek cover.
No, elephants don't get cancer, we do.

IMPRESSION:

1. The endometrial stripe is thickened measuring 9 mm, with cystic areas noted. The differential includes endometrial hyperplasia, tamoxifen related endometrial changes (although patient states non-usage over last several months), and endometrial malignancy is not excluded.

2. Small amount of fluid in the cervical canal which is a nonspecific finding.

3. Neither ovary is sonographically visualized.

So, they found something suspicious, just not my ovaries. I’d had previous ultrasounds where they didn’t find my ovaries. So, I was only mildly annoyed when the US tech describe my ultrasound as “difficult.” Hey! She practically stuck that probe right into my bladder – it hurt! Transvaginal ultrasounds aren’t a spa service, that’s clear.

I had this done in early October, just before my highly anticipated (by me) fall color tour. We went to Pennsylvania (so I could combine it with a work trip) where the colorful panoramas were stunning. I was sure that I would have no problem with the findings, so I made a mistake: I checked my electronic medical record chart Saturday morning. I should know better.

Miles and miles of color -- off of US 6 in the Sweden Valley

Let me tell you about the crisis that brought about in me. I was furious, then resigned, then teary, angry -- just a rollercoaster of emotion. For about five seconds, I thought about not telling my husband, but that’s not how I work. I share everything with him. I apologized to him even for looking. It took hours for me to pick myself up and function: I had a big presentation coming up; I had to look sharp and act normal. Criminy!

At least I had the grace to snap out of it to get some beautiful shots, and to facilitate that event a few days later. That counts for something, right?

I called my surgeon, who is kind enough (or crazy enough) to leave me his cellular number. He showed great empathy, but I would not be assuaged with “I’m sure it’s just normal…let’s have a closer look during surgery.” Nope, because if it is cancer, it grew up with less than 90 days of Tamoxifen. If it is cancer, it’s very, very aggressive. And I’ve had this stitch in my side that got a lot worse on Tamoxifen. It was possible that I had yet another CANCER. Ok, it’s endometrial, which usually responds well to having those parts removed, but that wasn’t the plan!

My plans are now completely askew! I had no idea what to expect!

More Procedures

So, we did an endometrial biopsy. Another fun procedure! Actually, things were worse back in my earlier days, so recovery really was quick. But suddenly that stitch in my side became an infection. I actually don’t think the biopsy caused the infection, wrong place, but no one knows what did. What got stirred up? What didn't like all this fussing?

What I know is that my lower left abdomen/groin area was stiff and hugely painful, and I developed a fever, even after the doctor prescribed big antibiotics. I still don’t know what caused it, I just know that the antibiotics have it under control. I will have an ultrasound next week, but if they didn’t see it before…

Meanwhile, I am trying to act normally at work. We are in an intense period, and I am navigating some major challenges. I was working from home to manage pain and medication side effects. (What is the major side effect of ridiculous amounts of antibiotics? Hint: it pays to be near the restroom.)

The biopsy results came back normal. The bloodwork showed I’m responding to the antibiotic. I’ll have another ultrasound next week, but right now, the plan is unchanged except for the addition of an hysteroscope – they will dilate me (misoprostol, anyone?) and have a look-see, complete with light and camera. It is still possible that something is there, but who knows what?

Update: The second ultrasound found the ovary, and it has the same cyst that has been there, giving me trouble, my entire life. Doctors should learn to listen to me. It also shows some possible progression of my uterine findings, but not the tumor. 

What fun! I am so glad I’ll be out of it. The day is nearing, and I find that my courage is not stuck in the sticking place, but "There is nothing either good or bad, but thinking makes it so."  Thanks, Hamlet.

I'm thinking this sucks.  How's it going for you?

Another magnificent vista off of US 220 in Pennsylvania