CANCER STORY

Lent of 2015 seemed like an appropriate time to withdraw from the blogosphere in order to spend more time drawing closer to God. Little did I know that He was drawing me closer for a specific reason.

It was early June when I found the lump, and a week later when the breast cancer diagnosis was official. The summer was a blur of useless anxiety and stressful medical procedures. Definitely a time of intense battle. The battle, however, wasn't actually against cancer per se. It was a very specific spiritual warfare against the fear and anxiety that riddled my mind for the months that followed. At my husband's suggestion, I will share some of those experiences with you. My hope is to prevent someone else from floundering around in the fearful fog that accompanies such a diagnosis. Lord knows that everyday I hear of another family member, friend, or friend of a friend, with some sort of cancer diagnosis. The prayer intention page of my journal is overflowing with names, including those of children. Prayerful solidarity is, no doubt, the best I can offer. But I have also picked up some information along the way that might also be of benefit. Some are open to it, others are not. So I will leave it in writing over the next few posts, so that those who are interested can access it at leisure. Those who are not interested can skip the posts and not waste their time with my ramblings.

But first, for those who have walked with me, prayed with me, and encouraged me over the past year-- know that I trust your love, prayers, and friendship more than I trust the doctors. You are the reason I was able to shake the enemy from my back and start thinking clearly.

Today I will simply leave you with this: There are many treatments for cancer that should be considered before you consent to the traditional regime promoted by surgeons, radiologists, and oncologist. Your cancer didn't evolve overnight. You have time to investigate all of your options before proceeding. Even the biopsy should be delayed until you have had time to do your homework. Don't let the enemy steal your peace of mind and rush you into making uninformed decisions out of fear. Here is just one of many places you can visit to  gather information: Breastcancerchoices.org


For those who have been asking about the fairly recent turn around in my attitude and my physical appearance, here it is in a nutshell:
  • Yes, I had the surgery. 
  • No, I would NOT do it over again if given the opportunity. 
  • Yes, I dropped a good bit of weight. 
  • No, it was not on purpose. 
  • Yes, it is a healthier weight (same that I weighed at age 24- if it was a healthy weight then, it is certainly a healthy weight for me now). 
  • No, it was not due to the treatment protocol (which, by the way, I declined). 
  • Yes, I am eating a plant based diet (85-95%).
  • No, I haven't totally given up animal protein. (You could call me a "flexitarian")
  • Yes, I am working out more often.
  • No, still not as often as I should.
  • Yes, Medishare paid for everything once I met the deducible. 
  • No, I am not seeing an oncologist anymore. 
  • Yes, I am planning to have a doctor monitor my health. *I finally found a fabulous Catholic physician willing to order the tests I need, without trying to coerce me into a treatment that is more life threatening than the original cancer. 
  • No, I am actually not particularly worried about recurrence.
  • Yes, I am now using Bio-identical Hormones (They are like magic!)
  • And finally--Yes, Yes, Yes, I feel fantastic!
After surgery I had plenty of time to sit on the sofa and research.  What I would have given to go back in time TO DO THE RESEARCH FIRST.  Maybe I would have gotten a second opinion from Dr. Laura Esserman. She seems like my kind of surgeon. Bit of a maverick. Definitely thinks for herself. There are some out there- look for them. There are a variety of resources listed at the bottom of this page, in case you would rather skip the story and go straight for the recommendations.

Lesson Learned: Research- Talk to People- Read Survivor Stories.

The following are a series of blogposts chronicling my experiences with Breast Cancer- Year 1(aka  the ridiculous series of events that stole the joy from my family during the summer of 2015).

The Nightmare Begins
Once my OB/GYN confirmed that the mass needed to be investigated, the mammogram was scheduled.  I could tell by the number of x-rays and the subsequent ultrasound that it wasn't looking good.  The radiologist minced no words, "Your results confirm classic breast cancer. You need to see a surgeon and have several areas biopsied within the next couple of days." I remember giving my husband a quick call to confirm what we had already discussed. Then I sat in the parking lot for  a good 15 minutes trying to compose my thoughts and steady my hands before driving home. The rest of the day was spent deciding how and when to tell my kids. Most of them were working summer camp in the Blue Ridge Mountains. This wasn't exactly the sort of info I wanted to deliver over the phone. I don't think I had any peace until I called a trusted priest.  After a good confession and the anointing of the sick, I felt ready to face cancer (which in my mind, at the time, meant facing death); but still not ready to face cancer treatment. Death seemed like a better option. The enemy was in my ear, stealing every opportunity to shake my confidence. What a roller coaster ride; prayers and spiritual highs, followed by great desolation and panic attacks. I was a hot mess for sure. My poor husband had the worst of it, since I wouldn't let him very far into my schizoid  little world. We were there together, each feeling very much alone. It was not a good place for either of us. I hope to never go there, again.

Lesson Learned: Get behind me, Satan!

The Nightmare Continues
After the horrid mammogram experience, I was in a panic to follow up with a surgeon. I could think of nothing else until that tumor could be excised. Since July kicked off with a holiday weekend, and the recommended surgeon was on vacation, appointments were difficult to schedule. I was given the grace of time and squandered it on useless anxiety. I made the decision NOT to Google "Breast Cancer," because I "already knew" what my choices were. I couldn't see making myself even more nervous by researching survival rates. "Miss Know It All" had a lot to lose by making such a foolish decision.

Lesson Learned:
Do your research. There are alternatives to the conventional "Cut, Burn, and Poison" treatment for cancer. Pray about it. Educate yourself. It is called "informed" consent for a reason. And don't expect the doctors to provide the information. You'd be surprised how limited their knowledge can be, in many cases.


'Bout To Get Real
Nothing makes a cancer diagnosis hit home faster than the talk you need to have with your kids. So many different personalities- each needing their own approach. I was fortunate to have most of these talks in person- one on one. It is so much easier to gauge the conversation when you can see facial expressions.  Not so easy with the out-of-towners, when the conversation happens over the phone. Reactions ranged from blank faced shock to full-fledged tears, from empathetic hugs to distant "I-can't-handle-this" silence. Everyone dealing in their own way. So much love poured out of my heart in an effort to console each child. But, unfortunately, that maternal instinct didn't do much for my poor husband. He was fighting his own battle. He wanted desperately to protect us all from the foreseeable pain- but felt helpless. He needed me, and I wasn't mentally accessible. He needed another man to help him wrap his mind around the events to come. Someone who had already experienced dealing with a basket-case of a wife. Dr. Google wasn't cutting it for him. 

Lesson Learned: Love intentionally, everyday. It's important to fill everyone's emotional tank for those days when you can do nothing more than make withdrawals.

First Visit To Tansey Center
Finally, the day came to visit the team who would manage my case. I thought it would be a relief to formulate a battle plan and move forward with treatment. Instead, my blood pressure shot through the roof and I could barely fill out the intake forms because my hands were shaking. I was escorted into an interior "lobby" lined with lockers and changing rooms. Women in luxurious, white spa robes were seated on row after row of sofas. They chatted or read magazines, matter-of-factly, until the attending nurse called them in. It was surreal. My first instinct was to run the other direction. The hair on the back of my neck stood on end. Something was not right. 

I  remembered having just such an uneasy feeling years before, when my husband and I prayed outside of an abortion clinic. I was distinctly aware of an intense spiritual battle going on behind the scenes. On another occasion, during the birth of my 4th son, that creepy sensation recurred. We had moved from Louisiana to Maryland during the last trimester of pregnancy, so I went to the doctor and hospital "assigned" by my insurance company. The childbirth experience was unlike any other. Nurses were bickering with each other, instruments were dropped on the ground- then returned to the tray in spite of the violated sterile field. Everything seemed to be going wrong; and I knew there was something seriously off.  It wasn't until we settled in to our new home that we found out the hospital also performed abortions on site. Again, a spiritual battle of epic proportions was surrounding labor and delivery. How could there not be, if they bring new life into one room, and end new life across the hall?

This Cancer Center felt like death. Not a holy, well prepared death. But a very unholy, evil manifestation of the culture of death.  I couldn't breathe.

Lesson Learned: Follow your gut instincts.

To Biopsy Or Not?
There was a quiet little voice inside my head warning me against having a biopsy.  When the day came to sign the consent, I asked the radiologist if it wouldn't be more prudent to have the surgeon excise the entire mass rather than breaching an otherwise encapsulated tumor. Wouldn't the procedure potentially turn a non-invasive carcinoma into one that is invasive? She gave me a nasty look and a terse response, "That is bad medicine. You don't want a surgeon mucking around in there without knowing what he is dealing with. Besides, your tumor is already invasive."

Already invasive?  That isn't what I was previously told. Really?

Back into the fog. I couldn't think. I could barely breathe. Heart rate increased. Blood pressure shot through the roof. And the clock was ticking. She wasn't about to let me keep her waiting any longer. So she performed the first biopsy. Anesthetic didn't work, so she reprimanded me for not holding perfectly still. She never got the second biopsy. When the third and largest mass was biopsied, the tumor was essentially split in half by the procedure. Tension was released like the snap of a thick rubber band. Half of the tissue actually shifted toward my underarm. My fears were actualized. An intact tumor was ruptured by the core biopsy and cancer cells were likely released into the surrounding tissue.  I broke my own resolution and went home to see what Dr. Google had to say about it. Sure enough, the research I found confirmed my suspicions. The John Wayne Cancer Institute offered this bit of information for my consideration.

Now I felt that there was no turning back from surgery.

Lesson learned: Again, follow your gut instincts. Don't be bullied by condescending doctors.

Leaning On The Body Of Christ
What a mess I was. And what a roller coaster of emotions!  A group of friends from daily mass sat me down and prayed, as so much love and grace filled my soul to overflowing. It overflowed as tears down my face. It overflowed into every area of my life. Fear and anxiety fled the scene and peace was restored (for a little while, anyway).

Lesson Learned: Perfect Love Casts Out Fear.

Shortly afterwards I called my mom. The boys would be at VBS for the morning, so we could drive into the city to visit the Blessed Seelos Shrine. I didn't know much about Francis Xavier Seelos, except that he had spent time in Baltimore at St. Alphonsus Church with St John Neumann. During the 10 years that my husband and I livied in Maryland, the kids and I would occasionally meet Dear Husband for Latin Mass at that particular shrine.  I heard that Blessed Seelos left Maryland for a warmer climate, and eventually ended up in New Orleans. I could totally identify! Instant connection.

Lesson Learned: Don't forget, we are not in this alone.
What I Heard
The surgeon was kind, gentle, respectful, and willing to spend as much time as I needed.  I was totally unprepared, nervous, and definitely not on my game.  I *heard* that there was only a small chance of this cancer killing me if I followed all of his recommendations. He *said* that there was only a small chance of this cancer killing me. Period. However, there was a 30% chance of recurrence in the opposite breast since there were areas of lobular hyperplasia found there as well. The initial examination indicated a mass size of approximately 2.5 cm. He insisted that it would all be well with no need for chemo or radiation. Surgery would take care of it. Oh and by the way, there is a clinical trial that I could participate in, if I wanted extra tests done to calm my fears about recurrence. WEll, YES, bring it on. Finally, I could look forward to being done with it all. I asked if there was time to take off for a week to clear my head. He said "Of course." So I did.

Lesson Learned: Know what to ask; and have someone else help you listen. Get your free guide to the right questions for your oncologist (adapt it for your surgeon).

*Turns out, in my case there is no statistical difference in survival rates between women who had a lumpectomy, a complete mastectomy, or - get this- no surgery at all. ARE YOU KIDDING ME????? What a bit of information to find out AFTER surgery.

So It's All Good Now?
After a series of mammograms and biopsies were performed, I agreed to participate in the clinical trial which included an MRI and extra lab tests to verify that a simple lumpectomy would be sufficient. Apparently, sometime between the initial exam and the MRI, the tumor became a 6 cm area of extreme concern. Instead of the original lumpectomy, the Doc recommended mastectomy at least on the right, with the opportunity to have the same on the left as a precaution if I wanted to be done with it. What a game changer!  I asked what he would do if it was his daughter or wife on the hot seat. Complete mastectomy- no question. He would also perform a simple excisional biopsy on the left to remove the hyperplasia detected earlier. 
Then it'll be over- done- finito!
No radiation, no chemo, no worries. 
So I swallow hard and go for it.

Fr. Stephen comes over for a second anointing and prayer support. He tells me that if this is what God is asking of me, then I can confidently give it to Him, as I have with so many other things in the past. I know he is right. How many younger women have undergone mastectomy without having had the opportunity to nurse all of their babies first? How many haven't lived to see their children's first steps, much less watch 11 children "grow in wisdom, love, strength and age?"  I'm beyond blessed. After a good confession and anointing, I am good to go. Feeling pretty invincible spiritually, so what have I to fear physically?

Lesson Learned: Maybe not a lesson learned, but a question to consider. Did the tumor grow because it was fast growing cancer, or did it grow because we smashed it, radiated it, poked holes in it, and basically pissed it off? I guess I will never know the answer to that one. But my gut feeling is that it was barely noticeable until the procedures began. And every procedure (action) seemed to cause a reaction. I could literally feel the changes.

Finally- Surgery!

So I purposely schedule surgery on a day that the surgeon can take me at 7 am.
I arrive at the appointed time, and wait. And wait. And wait.
The surgeon  finally comes in to prep at 7 pm. Turns out, there were a couple of emergency surgeries that he needed to perform BEFORE getting to his scheduled patients. (Seriously, a bus driver couldn't legally drive for that many hours without relief!)
Longest.Day.Ever.
I ask if he has eaten or rested all day. I know I hadn't, and I didn't want his blood sugar as out of whack as my own. So he took a few minutes to grab a bite. 

Surgery prep is a nightmare. They can't find the vein to start the IV. Wonder if dehydration could be the issue? It's only been 21 hours since my last sip of water. Duh!  Then they blew 2 veins. Next, the shoulder block doesn't take. Painful jab into a nerve- but apparently a little too low to get the desired numbing affect across my chest. My hands and fingers are numb instead.

Now for the radioactive injection into the most sensitive part of my body- What? No mention of that in the pre-op appointment!

Maybe it's time to change my mind and get the heck out of here.
That's when the sedative hit.

I wake up to my dear husband crying at my side.
The attending nurse tries to chase him out of the room.
I just want to go home and put this behind me.
Tubes, drains, and pain. So much pain.


But at least it's all good now. Right?
I mean, after a few weeks of recuperation this nightmare is over.

Lesson learned: It ain't over till it's over. And with cancer diagnosis, it is never over.

Trust
Post-op is a game changer.
Pain is lessened by removal of drains. Finally!
Stress is elevated as surgeon discusses the pathology report and all the commotion it caused at the tumor conference.
Apparently the margins were deep, but clean. They had to remove the chest wall muscle fascia (that explains all the extra pain that the shoulder block was supposed to take care of).  But in spite of clean margins, they didn't get it all; and they don't really know what to do about it. There is no way to know where the rest is located. A small piece of fatty tissue, trimmed off of one of the specimens sent in for biopsy, contained cancerous cells. It was included with the specimens. No way to tell exactly where it came from. Could be anywhere in the chest or axillary area. He didn't think it was anything until the path report said otherwise.
Mr. Kind and Gentle Surgeon says he can go back in to remove more underarm tissue and lymph nodes, but that probably isn't going to help. He recommended looking into radiation and tamoxifen therapy. Maybe I could have an MRI in a few months. But honestly, there really is no good way to monitor the situation. 

An entire room full of "experts" at the tumor conference couldn't agree at all on the best course of treatment.

Ok, so it ain't over. It's only just begun.

Lesson learned: God is in control. Not the doctors, and certainly not me. I know this in my heart, but can't seem to get it through my thick head. Once this lesson is learned, I might begin to figure out what this ordeal is really about.
Now What?
Time to meet with the Hematology Oncologist. I have my list of questions ready, and he has no answers. He says I have several options: Active Surveillance, Radiation, Tamoxifen Therapy, Another Surgery, or any combination of those choices. All are equally valid options. He cannot say one is better than the other. In addition to Active Surveillance, Radiation would make sure that any possible cancer cells left behind would be eradicated. Tamoxifen would improve my chances of preventing recurrence by 5%. I could always talk to the surgeon if I had questions about going that route.

I asked a silly question. What about eating an Anti-cancer diet and getting plenty of exercise? I've been reading that those two things can reduce the chance of recurrence by more than 50%.  As a matter of fact, exercise alone can reduce it by 50%.

He said, and I quote, "While it is true that people who eat healthier and exercise regularly do much better than those who do not, we don't really know why."

Seriously?  He doesn't know why?

OK- let's see what the Radiation Oncologist has to say.
He recommends radiating my entire chest and underarm area, daily for a period of 12 weeks. Since they don't really know where the suspicious cells are located, it is best to blast the whole right side of my upper body.

Perfectly safe, except for the damage it will cause to 20% of my lungs, the probability of lymphedema, and extensive radiation burns to the entire area (all of which he very reluctantly admitted would occur).
Yes, well, no. I am not even going to consider this option.
So he gives me this threatening speech about how I have to do this, or at minimum take Tamoxifen for the next 5 years.

Really, I should do both, He says.

Silly Question #2- If Tamoxifen causes blood clots, possible stroke, mood swings, difficulty with concentration, pelvic pain, cataracts and other eye disorders, weight gain, and among other things (it is a very long list), a 30% CHANCE OF CAUSING A DEADLY FORM OF UTERINE CANCER, WHY would I take it for a 5% chance that it will prevent the recurrence of something that might only have a small chance of killing me in the first place?

Well that "small chance" might have been a little off. There is a 30% chance the hyperplasia on the left side could actually develop into something more serious also.

30% chance of breast cancer recurrence, traded for a 30% chance of uterine cancer, with a chance the breast cancer could recur anyway after the 5 years of therapy, and/or a host of other very serious side effects. Hmmmm. Still doesn't sound like a good plan to me.

Uhmmmm- No.

Ok guys, so I am going with Active Surveillance and preventative diet/exercise.  See ya.

I cannot tell you the peace that flooded my entire being once I decided to walk out of the cancer center for good. Was it the fruit of all the time spent in Eucharistic Adoration? Was this the answer to all of those prayers for discernment? Sure felt like it. My head stopped spinning in confusion, my blood pressure dropped to normal, and a smile replaced an anxious grimace on my face. It was a "get behind me, Satan" kinda moment.

Lesson learned: "Experts often possess more data than judgment." Colin Powell

*Side note- A week or so later, the surgeon gave me a call. Guess he was elected to follow up with the crazy lady who walked away from her treatment options. 

At the end of the conversation I asked Silly Question #3: "Are you calling me because you think these options are what's best for me, or because they are best for the legal interests of the hospital?"  His response, "Well you have a nice day. Don't worry, we won't bother you again."

A Few Recommended Resources:

What Your Doctor May Not Tell You About Breast Cancer
How Hormone Balance Can Help Save Your Life
by John R. Lee, M.D., David Zava, Ph.D. and Virginia Hopkins

Natural Strategies for Cancer Patients
by Russell Blaylock M.D. 

Cancer Free, Are You Sure?
by Jenny Hrbacek RN

Chris Beat Cancer

Breastcancerchoices.org




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