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Saturday, July 21, 2018

I Just Might Dance!

Right now, Diane is going through my discharge papers, which tell me what kinds of activities I should be doing ... most include the word REST. But others say shoulder rolls and 90-degree arm raises. You know, the hard stuff ... ;-) Really, not supposed to do anything else until given the okay by the surgeon on Monday.

Speaking of the surgeon, I was blissfully sitting with my personal comfort dog, Pepito, when the phone rang. It was my surgeon, Dr. Klade (I think this is the first time I've named her.).

She said, "I hope I didn't disturb you. I know it's Saturday, and I'll see you on Monday, but I didn't want you to worry until then. We got your pathology report back, and ...


So, I just might do my happy dance in whatever way is permissible without damaging a stitch or two.

PRAISE GOD from Whom all blessings flow!
Praise Him all creatures here below!
Praise Him above, ye heavenly hosts!
Praise Father, Son, and Holy Ghost!


Where do I Begin?

Buckle your seatbelt, this is long.

Before the residual fog of anesthesia and time blur the memories, I need to recount (to myself, if not to you) the events of my single mastectomy on Wednesday, July 18, 2018.

I drank my required 12 ounces of Gatorade at 10 PM the night before, and again at just before 7 AM, along with 1000 mg of Tylenol ... this, they say, to just start to take the edge off of upcoming tests before surgery.

Thanks to Sue Meilleur, I packed up my tiara and pink feather boa, along with all the various and sundry things the hospital said I should bring, and headed for the hospital in Naperville just before 7 AM. Pete Tammeling, our church's care pastor, called on our way to pray with us.

Sidenote and repetition: I am SO grateful for the prayers of family and friends! My goodness, I feel like the young man whose friends lowered him through the ceiling to get to the healing power of Jesus. Just that thought makes me want to weep. Thank you, thank you, thank you, for your prayers!

All parked, winding our way through the maze of hospital hallways to the one elevator that leads us to the surgical check-in, I'm remarkably calm. This is unusual for me. I don my tiara and feather boa and walk into the office to a grinning receptionist. I swear, everyone we came in contact with was comforting and welcoming. And probably a little shocked at my appearance, but I digress.

Not long after, Ingrid walked in, also all smiles. She's one of my best cheerleaders.

From here on out, I get the royal chariot ride treatment. Wheelchairs all the way, baby! First stop, vitals and gowning. They want to make sure I know who I am and why I'm there and that I will sign away my firstborn should anything go wrong. Okay, not really, but I get no drugs until I've signed the paperwork. ;-) First the nurse applies a "desensitizing" cream to the area in question. Then I get the valium. Why? Because I've got some tests coming up that might cause a little anxiety.

Wait, wait, wait, while that starts to take effect. Family goes to the waiting room, while I get the chariot ride to radiology. I'm greeted by (see, I've already forgotten her name...). Again, so friendly. I told her that a friend of mine warned me that I might want to punch out the doctor who does this test. You see, they inject a radioactive tracer to find the nearest lymph nodes to the affected area. They tell you that it "might burn" a bit. The radiologist returned, "Yes, that's why we give you the Valium. You can't hit as hard that way ... *grin*"

But what I didn't know is that there are two different types of radioactive injections. One is the tracer that just finds the sentinel nodes, and one is the blue dye that finds all the ... well, the rest of them and their pathways. Praise God, this was the former!

So, I'm on a typical exam table. The desensitizing cream has been covered up and doing its job, and the radiologist explains the procedure to me. But wait, I'm staring at the ceiling where usually you'd see a glaring light. Instead of squares of fluorescence, there is a tree branch with diffused sunlight. Great! I can count the leaves!

Next comes that freezing spray and a "pinch" (why do they always say it will feel like a pinch?) as she injects the first tracer of four. Ditto three more times. Now she turns on some soft music, dims all the rest of the lights, and those tracers find their marks. I could almost fall asleep ... almost. And no, it didn't hurt. She asked me, on a scale of 0-5, what pain level that test was. I said, maybe a 1. Bingo! Right answer. She was happy to oblige.

Now it's time for four 5-minute pictures of where those tracers ended up. For this, I get my first experience in an open MRI, of sorts. But it's not MRI, it's gamma rays, she says. "Are you claustrophobic?" We'll see, as I glide into the machine and the "ceiling" comes within an inch of my nose. Thankfully, it's open on the sides, so I turn my head and close my eyes. No problem.

All done with that and head back up to OR holding, where my surgeon and anesthesiologist will visit just prior to wheeling me off.

At this point, Mark, Diane, and Ingrid are able to come wait with me. Ingrid had the temerity to say that she really likes me on Valium ... uhhh, just what do you mean by that?

Dr. Dude (I've given him that nickname, since the first part of his name sounds like that, and he is a really funny guy) comes in and tells me that he's going to send me to lala-land so I should pick out a dream now. Then the surgeon pokes her head in to tell me that they'll be ready for me in just a bit, how am I doing, and jokes with Dr. Dude. Mark asked her how early she starts surgery in the day, and where am I in line? She said I'm the 4th of the day, and mine is scheduled for 11. Wow!

Here we go. My transport awaits and takes me through a labyrinth of secret hallways to OR #19. They assist me from the gurney to the OR table, and introduce me to everyone in the room who will be helping for the mastectomy. No, I don't remember ANY of their names!

Somewhere behind my head, Dr. Dude appears. He asks me what dream I've picked out. I said, "A Viking Riverboat cruise!" "Where are you going?" "The Grand European tour." "Great! Bon voyage! Have a great cruise!" And that's the last thing I heard ...

Until I awoke to a nurse asking me my pain level. I'm groaning. I'm crying (not afraid to admit it). And I am shaking like a 9 on the Richter scale. At one point I was sure I was having a seizure. I could not stop quaking. "Your pain level?" "Maybe 6-7. And my face is itching!" "Okay, I'll give you something." wait...wait...wait... "How about now?" Crying ... 6-7. "Okay, morphine it is." I think I quit shaking after that, and at some point my next chariot came to transport me to an overnight room.

By the time I was coherent, the nurses informed me that I had an allergic reaction to something in the anesthesiology cocktail (thanks a lot, Dr. Dude!)...most likely the Ancef anti-biotic. Who knew? I do now.

But hey, from then on out, pain level was almost nil. The nurses and techs were incredibly helpful. Numbers stabilized. Christian inspirational music piped through my "entertainment system" and I got food! Good food, actually!

My nurse navigator and surgeon visited the day after surgery, walked me through what to expect going forward, including all the goodies that the kind folks at Blue Cross/Blue Shield and the American Cancer Society have available to survivors.

Because that's what I am. A survivor!

Monday, July 16, 2018

God is in the Details

Are you a detail person? Or are you a "just give me the big picture/bottom line" kind of person?

Call it a control issue (I know you will), but I want it all. Give me the goal, and then I want all the details that will get me there.

Some say "the devil is in the details," which is true if those details go awry. However, God is a God of order, and therefore I can trust him with the details.

Here are some details I'm dealing with right now.

  • My mastectomy surgery is on Wednesday, but I still don't know what time. I'm told that the hospital will call me on Tuesday with the time I'm to arrive. Important detail.
  • Before surgery, I will first go for sentinel node mapping. (What are the details of that, you ask.)...
  • Head to Nuclear Medicine in the hospital. I'll be wheeled there, thank you very much. Mark can follow me.
  • I'll change into "the gown." 
  • I'll be given an IV.
  • Cream will cover the surgical area (they don't want to slow blood flow during this time, so no lidocaine).
  • Hop onto the exam table.
  • More numbing from topical spray (that feels like you just jumped into a bucket of ice, apparently).
  • I will receive four injections of blue dye that may burn.
  • I'll be given a warm pack for comfort after the previous jolts.
  • Wait for 15 minutes while the dye works its way to the lymph nodes.
  • Then come four 5-minute scans.
  • I'll be wheeled to OR, where I'll chat with the anesthesiologist (yeah, right) and the surgeon. 
  • Followed by possibly waiting for one hour before surgery. 

I'm told that the surgery will take 1-1½ hours. Sounds like a good nap to me.

So, please pray that ...

  • Every one of those details runs smoothly.
  • I have a bold and trusting attitude, considerate of those who are working with me.
  • The surgeon and anesthesiologist have every one of THEIR details under control.
  • I will relax into the knowledge that God has every detail under control, and me in His loving hands.
  • The final outcome is ... all clear! "Clear" to me means no cancer remaining, no infection, and no lymphedema.

Thanks to all you detail-oriented people who can pray specifically now. And thanks to all of you bottom line people who will pray for that final outcome.

The biggest God detail I want to remember is that, because of His power, I can have peace.

Thursday, July 12, 2018

Real Notes

Things got real with the call from the surgeon's office.

"What time would you like to schedule your operation?" (You mean I actually have a choice? Well, let's get this thing going!) "What is her first availability?" "Let's see ... looks like next Wednesday, the 18th." "What time?" "We won't know what time until you get a phone call the day before."

Well, okay then. Here we go. T-minus 6 and counting.

Notes from the pre-op instructions:

  • No blood thinners from now until surgery.
  • No multi-vitamins until surgery.
  • No more coQ-10.
  • Zi-cam seems to be okay.
  • Nothing to eat after 11 PM on the 17th. But wait ...
  • Drink 12 ounces of Gatorade 12 hours before surgery.
  • Drink another 12 ounces 4 hours prior to surgery.
  • Take 1000mg (if my math serves me correctly, that would equal 1 gram) 4 hours before surgery.
  • We can park on the second floor of the south parking garage that states "reserved for surgery patients."
  • Enter in the south lobby, turn left, go to elevators at end of hallway and take them to second floor.
  • Straight ahead to check in (heart palpitations...).
  • Leave all valuables at home.
  • Take off all jewelry ... rings, piercings, etc etc.
  • Wear loose clothing that buttons up the front.
  • No pathology will be given over phone.
  • Staying overnight.

MyChart is my frenemy. Timely information, and sometimes too much or too little to suit me.

My sister, Diane, has volunteered to stay with me for the first part of my recovery. I'm so grateful. She may as well be a home health aide with as much as she's done for our parents the past few years. So now she is stepping down a generation and helping me.

As we go into this next week, my prayer list goes like this:

  • Bravery
  • Trust in the LORD
  • Peace
  • Flights at a good price and time for Diane
  • Pain management without dependence
  • No infections
  • All cancer GONE!!!
  • Ministry to those with whom I'll come in contact

I purposely didn't put a link to this blog today. If you are reading it, you have determined to be a prayer warrior, and for that I am SO grateful! Thank you.


Tuesday, July 10, 2018

My Comic Relief

For Women Only! (Men, read at your own risk.)

This blog is really just an elaborate ruse to say thanks to my own private comedy company: our daughter, Ingrid. Between my husband and her, their lot in life is to make me see the bright and humorous side of everything.

And so began my day with the plastic surgeon. Ingrid agreed to accompany me to give her womanly wisdom on the subject of reconstruction.

I mean, really, should that be cause for laughter? Only when you can see that God is saving you from something far worse and, therefore, whether or not to add a stand-in for a soon-to-be-removed breast qualifies as joke fodder.

First, there's the fact that I had to weigh in ... again! Horrors. But the nurse laughed. Ingrid laughed. I removed my glasses, shoes, and anything else that I could without being indiscreet ... and laughed. At one point, I think we probably discussed how much weight I would lose by having my breast removed, but ...

I may have been raised in the 60s, but I am a bit on the reclusive, modest side. I get a tad embarrassed at the doctor's office, and this is really pushing it for me. Because next came "measurements." And I don't mean "around." Picking a focal point ("my eyes are up here!"), the reconstructive surgeon measured to the center of each breast. So no ... not twins of a gazelle. More like distant cousins. And remember when Mark had to get his eyes lifted a few weeks ago because of "ptosis"? That means "sagging to the point of falling asleep." The same term was used for those "twins."

You might guess, if you know me well, that I am risk-averse. I'm practical to a fault, usually. When I initially met with the mastectomy surgeon, she made it sound like reconstruction would be done at the same time as the mastectomy. Well, sort of. The only thing that would be done at the time of first surgery would be to install an "expander" in the space, which (much like a dental expander) would need to be tweaked each week to accommodate the next surgery for actual implant. Remember the risk-averse? Yeah. More than one surgery is not my idea of recovery.

Basically, there are three types of reconstruction open to me. Since I must have a complete mastectomy (sorry if all of this is TMI), I can either leave it as is (no reconstruction), implant a saline sack, implant one of two different types of silicone gel sacks, or opt for autologous reconstruction.

The best thing I heard all morning was when the reconstructive surgeon was discussing the autologous type of reconstruction. Frankly, it makes my knees go weak just thinking about it. Skin and underlying fatty tissue is removed from either the abdomen, buttocks, or inner thigh, and used to form the new "breast" and then inserted where an implant would go. But wait! He said I didn't have enough to work with. Hahahahaha! I guess that one  oversized love-handle wasn't enough to go on.

Then there is the saline implant. Much like implanting a water balloon. Picture that, if you will. I laugh just thinking about it. I asked him how many he did of those each year, and he said, "One." What? Well, yeah ... that mind picture. However, they are probably the more "safe" of the two types of implants, because if there is a rupture, the saline just gets reabsorbed into the body. Right after your chest deflates...

So then there is the gel implant. One is smooth, and moves around under the skin (creepy) and the other is textured and stays put. So, why wouldn't you want the one that stays put? Because all that texture tends to gather problems that the lymph system wants to war against.

Most women opt for the "gummy" type of gel. I have two friends (who will remain anonymous unless they want to out themselves) who got these gummy gel implants. One describes it as feeling like something is constantly strapped to her chest, never quite feeling natural (gee, I wonder why?). The other affectionately calls her breast "Sponge Bob Square Boob"! Go ahead and laugh ... it is hilarious. This can happen due to scar tissue build up around the implant.

Then he treated Ingrid and me to "before and after" photos, complete with tattooed nipples (why do I not like to even say that word?). This is an ingenious and excellent way for someone who has been through the reconstruction process to have a sense of normalcy.

But since when have I been entirely normal? My initial surgeon wanted to make sure I got together with the plastic surgeon to go over options. I've done that now, thank you.

To reconstruct or not is an extremely personal decision for each woman. I belong to a FB group called "Pink Sisters in Christ." All 3300 of us are somewhere in our breast cancer journey: newly diagnosed all the way to 10 years NED (No Evidence of Disease). I want to thank a friend of mine for turning me on to the group, because it is a treasure trove of encouragement, wisdom, and women praying for one another. I love it! Thank You again, Lord, for your praying people!

Every one of the women in that FB group is unique and has their own reasons for how they decided on recovery and reconstruction.
My bottom line: I'm sticking with mastectomy and no reconstruction. So now you know. Sometime in the future, if we should meet face to face, I expect you to look me in the eye, because there is nothing to see down there! Just call me "one and done." Or "One-derful" will work, too. Or, perhaps, "Padiddle" (you know ... when you see a car with one headlight out?). But whatever you do, help me keep my sense of humor.

I will keep my scar.

It will be a constant reminder of what God has saved me from. There are plenty of alternatives out there to show the outside world that I look "sort of normal." But I will never be normal again. That makes me tear-up just a bit. So ... someone tell me a joke. I would like to laugh my way through recovery.

Thanks again, Ingrid, for being my morning comic relief. I love you (and pray you never have to go through this yourself).

Tuesday, July 03, 2018

God is so Good!

If you were standing near me right now, you might hear me singing those words. Here are some things I am thankful for today:

  • Compassionate surgeon, who is thorough and has a sense of humor
  • Compassionate medical oncologist, who promises empowerment
  • Friendly medical staff
  • Reconstructive surgeon's office rearranging their schedule so I can get a consultation before their normal 30-day wait!
  • Praying friends and family
  • Culver's frozen custard ... okay, I shouldn't have eaten that, but it was delicious

I cannot imagine doing surgery or oncology for decades. Unless you have faith in the Almighty God, how do you possibly keep your empathy and patience for every single person who comes through the door with a new diagnosis? But these folks I've run into sure do. I am so grateful that God has placed them where they are.

Here's how the schedule has gone so far:

May 23 ... appointment with primary care physician. Lump was enough of a concern that she scheduled me for next available mammogram

May 31 ... mammogram immediately followed by ultrasound

First week of June ... follow up letters on My Chart give me mixed messages. First it says, "nothing to worry about." Followed by, "We have designated this as a BIRADS-5. Please schedule a biopsy." Not a happy week, for sure.

June 25 ... Stereotactic core needle biopsy guided by ultrasound. Initial response by radiology doctor was that tumor collapsed during biopsy, and she felt this was a good sign. Hopes are up that this is benign.

June 28 ... Pathology report states, "Abnormal" and I head to the report consultation with Mark at my side. The bad news/good news of cancer, but a rare form that may or may not be contained. Immediately schedule me for appointment with surgeon.

July 3 ... Met with highly recommended female surgeon at 8:30 AM. Friendly. Forthcoming. She went over all the results again with me, and all of her recommendations. From the looks of it, the lumps are far enough away from each other, even though they are in the same quadrant, that a lumpectomy would cause quite some deformity. I had already read enough that I was leaning toward complete mastectomy anyway. She agreed that would be a good choice.

But here's the thing. I erroneously thought that taking all the tissue would be a "one and done" deal, and I didn't plan on any reconstruction. No more risks for me, thanks! However, she talked me into at least speaking with the plastic surgeon for options.

Here's the other thing. I thought we would schedule surgery by the end of the appointment. But I have to meet with everyone else first, and if reconstruction is in the picture, their schedules have to line up.

And that brings me to my 3 PM appointment with the medical oncologist. If you didn't know, and I didn't, the surgeon only gets the cancer out of the location. If radiation is necessary, a radiation oncologist is called in. Not likely in my case, since it will be mastectomy rather than lumpectomy. If reconstruction is chosen, the plastic surgeon steps in, either right at the time of mastectomy, or later if there are complications.

The medical oncologist is necessary for anything that may be systemic. You know, those nasty little cancer cells that went rogue and camped out in the lymph nodes or took a ride down the bloodstream.

The medical oncologist went over my results again. Let me tell you, every time helps! She was SO encouraging! Between her and the surgeon I got the picture ... nothing is determined until pathology gets ahold of the removed tissue. BUT, her initial look (I think I'd better quit depending on those) was that unless there was a rogue cell in the sentinel lymph node, I may actually ... dare I hope it ... bypass chemotherapy! If that is the case, because my particular type of cancer feeds on estrogen, I would go on a post-menopausal estrogen blocker for five years as a protection for the non-affected side.

Please pray:

  • That the cancer is indeed contained (non-invasive)
  • That the sentinel nodes will be clear
  • That no radiation or chemotherapy would be necessary
  • That I would have peace about reconstructive surgery (the earliest they could get me in for consultation is July 10)
Praise God that everyone I've spoken to so far has assured me this is not an aggressive cancer. They want to let me know that this is a "bump in a very long road." 

Encouraging and empowering. And I know where that came from. GOD is so GOOD!

Monday, July 02, 2018

Aren't I Special?

When one takes a test, one would love to be in the top (or most unique) 1%, don't you think?

Well, then there's this ...

From Johns Hopkins:
Papillary Breast Cancer
Papillary Breast Cancer Diagnosis
Papillary breast cancer is a very rare type of invasive ductal breast cancer that accounts for fewer than 1% of all breast cancers.  The name comes from finger-like projections, or papules, which are seen when the cells are looked at under the microscope. 
Many papillary tumors are benign.  These are called papillomas.  Even when a biopsy is negative for cancer, the pathologist often needs to look at the whole tumor under the microscope to be sure about the diagnosis. This is why surgery to remove a papilloma is usually recommended, even if it is thought to be benign. 
Malignant papillary tumors are a form of breast cancer.  Like other types of invasive ductal cancer, papillary breast cancer begins in the milk duct of the breast. Most of the time, papillary breast cancers include both in situ cells (which have not yet spread outside of the duct) and invasive cells (which have begun to spread outside of the duct).
Papillary breast cancers are usually small, and positive for the estrogen and/or progesterone receptors (ER/PR+) and negative for the HER2 receptor (HER2-).  Compared to more common types of breast cancers, papillary breast cancers are less likely to involve the lymph nodes, are more responsive to treatment, and may have a better prognosis than more common types of invasive ductal cancer.
Papillary Breast Cancer Treatment
Local therapy is aimed at preventing the cancer from coming back in the breast. Local therapy includes surgery (lumpectomy or mastectomy), and may include radiation. 
Systemic therapy is used to prevent the disease from coming back or spreading to another part of the body.  This may include endocrine (hormone) therapy, chemotherapy, and therapy that targets the HER2 protein.  Often different types of treatment are used together to achieve the best result.
Your treatment plan will be based on the features of the tumor (type of cells, tumor grade, hormone receptor status, and HER2 status) and the stage of the disease (tumor size and node status). Your oncology team will recommend a treatment plan based on what is known about papillary breast cancer in general and tailored to your specific disease.
We know that it can be stressful to receive a diagnosis of breast cancer, and learning that you have a rare form of the disease can add to your anxiety.  We hope it will be reassuring to know that our team at the Center for Rare Breast Tumors is dedicated to latest research and treatment of papillary breast cancer, and is here to support patients and their families through diagnosis, treatment, and survivorship.

Like the radiology pathologist said: bad news and good news. 

So, I'd appreciate prayers for:

  • an oncology team that is prepared for this type of cancer
  • that I would submit to treatment with a positive attitude
  • that I would be a witness to the power of God in my life
  • that the tears that fall would be cleansing and not ... cannot think of the term ... in dismay

Sure, go ahead and tell me I'm special. And grin when you say it.


I got the sweetest texts from one of my granddaughters the other day. She and the family had been talking about "Nana's cancer." And like most of us with limited experience (or no experience) with the topic, she immediately went to the worst case scenario.

"Ur (sic) one of the most healthy person (sic) I know." Yes, weird, isn't it?

We seem to always hear the phrase, "What doesn't kill you makes you stronger." But what about the fact that sometimes we cannot even see what is killing us??? Or has the potential to, anyway.

It's the hidden disease that has the most potential to harm. Disease that we don't even want to admit exists. As I've written before, "I'm an idiot!" I ignored the warning signs, attributing them to experiences with which I was more acquainted, rather than having them checked for ... breast cancer.

The same holds true for spiritual disease. We don't want to admit sin and so we ignore the warning signs. But God's Word is true and right and holy. It contains the definition of sin ... and the cure.

The Creator knows me inside and out. He knows my hidden disease, physical and spiritual. I'm trusting that the Creator is also my Healer.

Can't hide from that.