Monthly Archives: October 2016

Winding Roads

 

winding-road

This is post 2 regarding my journey with breast cancer. The first post is dated October 6, 2016.  I am hope that my journey will help others as new to this experience as I am now answer some of the questions they have during this journey, and that they will find hope in my story.

Cancer is a lot of hurry up to wait.

I found a lump the weekend of October 8th.
My PCP confirmed a lump on October 10th.
The mammogram and sonogram of October 10th said probably cancer.
October 11th the surgeon had my reports, and a consultation date set.
October 17th I met the surgeon, and an MRI and a biopsy were scheduled.

I was dizzy from running from one doctor’s office to another, and still in shock that I have cancer.

The MRI was scheduled for Tuesday, Oct. 18th
The biopsy was scheduled for Friday, Oct.  21st.
No one could tell me exactly what to expect on Friday, medically or financially.

So I waited and I prayed.

The MRI

I was sent to a wonderful center for women that was set up by an amazing Radiology Oncologist who is also a former breast cancer patient.  The center founder went out of her way to make the experience as non-traumatic for patients as she could and I am grateful.  The technician was sweet and carefully explained the whole process, though it wasn’t my first MRI.

For those who may be reading this who have never had an MRI and are afraid of it. Please don’t be afraid.  There is nothing painful about it.

It involves the use of magnetic power, so remove anything metal, and if you have pacemakers or anything metal on or in your body be sure the MRI tech knows.  The machine I was placed on was built especially for breast exams.  You lay on your stomach, your breasts hang down into little cups built into a table, your legs are positioned slightly up behind you, you’re given ear plugs and ear phones (with music if you want), and told not to move.  It is open on both ends, to ease that closed in feeling. I am claustrophobic, but this didn’t bother me at all.  They didn’t strap me down.  I was only warned that moving would mean having to start over.

The machine makes a lot of funny noises, and they vary in volume and type. Some of it sounds like loud church bells, some of it sounds like a jack hammer, some of it just sounds like a motor running.  The music didn’t drown it out totally, but it did help a lot.

Some older places may still use the lay-on-your-back-and-get-moved-into-a-tube form of an MRI, but again, nothing painful to them at all.

MRI RESULTS – Going into the biopsy I had no clue what the MRI results were.

The MRI was late in the afternoon on Tuesday the 18th.   It was meant to provide more info for my surgeon before my biopsy.  The biopsy scheduled for the first thing Friday morning. When I asked for results I was told the MRI results would probably arrive on Thursday or Friday afternoon. I reminded them that the doctor wanted them before he did the biopsy, and they thanked me and said they would rush the reading.

My breast is very busy

On Thursday they called to tell me they had not received the official, full MRI results yet, but that from what they had seen my left breast looked “very busy,” and that they were concerned it looked “very busy,” and that they were going to need to do an ultrasound on the left side the same day as the biopsy.  My lump is in the right breast.

I didn’t think anything could be more frightening than hearing my lump was probably cancer, until I heard that they were worried about both breasts.  I asked, “Are you telling me the cancer is in the left?” They replied, “Well, we can’t say that of course, but it looks very busy, there is a lot of activity in there, it doesn’t look like what we would expect a normal breast to look like, so we want to do an ultrasound on the left breast on Friday, just to make sure.” Make sure of what?!  What does “busy” mean? I never got an answer to either question.

Cancer is a lot of hurry up and wait.

I was asked if I had taken any aspirin. I responded that I hadn’t. Remember that. It matters later.

Plan of Action for Friday  – Arrive at 8 AM, do a biopsy of the right breast, wait while they took in another patient, do a sonogram of the left breast.  At this point, I wasn’t sure if meant to do a biopsy and lumpectomy or just a needle biopsy .  I am sure they had told me, but when you are in shock, it doesn’t always stick.

Financial Plan for Friday
I asked again how much money I needed for Friday and just as I had been told with the MRI, I was told, “We don’t know.”   That was the official answer, though a little more wordy.  “We don’t know what the biopsy will cost up front, but you’ll have to pay $100 + 20% for the sonogram.”  To which I replied, “Well, how much is that?” To which they replied, “We don’t know.”

That “we don’t know,” is fairly standard procedure for the entire cancer journey when it comes to money.  They need to know what your insurance will or won’t pay before they know what they expect up front. This makes planning for the finances incredibly difficult.

My daughter had set up a GoFund me campaign, and my sister and other family members had helped me out with some of the expenses already incurred.  The money was coming into the GoFund Me account, but it requires transfers and those take time.  So our family plan of action was that if they demanded more up front on Friday than I we would simply reply, “You should have told us what to plan for when we asked the first four times.”  I still like that plan actually.

Friday!

Son, daughter and son-in-law meet me in the lobby, and so does the technician who is going to do the ultrasound.  She says we have a new plan. We’ll do the left sonogram that very morning, and good news, the full MRI report is in, but no one has had time to read it yet.

She does the sonogram, marks a ‘cyst’ that concerns her in the left, and says it is “just a cyst, though it looks suspicious”.  I’m not sure how to take that, but decide the surgeon will know. I pray it is nothing.

The Biopsy Itself

My surgeon is very professional, and also very charming.  He carefully explained every step of the process as he prepared for each step of the biopsy,  from the first rubbing of alcohol on the area where the local anesthetic would be applied, to the last moment.

He asked me again if I had taken any aspirin, and I told him, “No,” because I hadn’t taken any for several days.

I was prepared for incredible pain from the insertion of the needle to administer the local anesthetic, and was joyfully surprised. I’ve had shots, cat scratches, iv’s, and blood draws that really sting. I cannot bear a pain killing shot at the dentist office, but this felt like a very light, pinch.  Nothing more.

He warned me there might be a feeling of pressure.  There was, but no pain. None.

An aspirin a day might not keep the doctor away.

I was not in pain, but I was bleeding more than my doctor expected so he asked me about aspirin again, and I told him that I hadn’t taken any since Monday. He chuckled and looked at his technician with a brow lifted and she said, “I asked if she had taken any. I didn’t ask if she had taken any this week.” I had no idea that aspirin has a blood thinning capability for over a week. Now I know.

He made her redo the dressing on the biopsy sight, and asked for a pressure bandage, but she was out, so he told me to put pressure on it, watch it, not to do any reaching or lifting, or anything else I could avoid doing with that arm.

Then they sent me out to the lobby to sit and wait a bit, and as I was talking to my family my daughter noticed I had blood on my sweater. I thought she meant “a few dots of blood.” She meant, “a lot of blood.”

Daughter scooted me off to the lady’s room and we discovered I was trailing blood all over the floor, and I looked like I had bathed in cranberry juice.  I was perfectly dressed for a Halloween horror film.  There was no pain, but it looked like a lot of blood.

My daughter calmly called the nurses and they packed it off, and fetched the doctor again.  He pondered putting a stitch in, and they all decided that a better bandage, and more pressure probably would do the job.

When they had it under control the doctor joked that the good new is everyone stops bleeding… eventually, and then he joked about leaving to go make a blood donation in my name. That reassured me and let me know that he wasn’t worried.  He did tell me to call if I got home and was concerned. The nurses fussed over me longer, taped me up like a mummy and waited to see if it seemed to have stopped.

Preliminary, unofficial MRI results

While everyone was watching my little “Jason” scene, they told me that they hadn’t officially read the MRI report yet, but they did “skim read,” the results of the MRI and Sonogram, and the preliminary results looked good in that department. Whatever that means.

When they felt the bleeding was under control they sent me home.

Aspirin really is a great blood thinner. A really great one.

Apparently, handling my old truck was enough reaching to start it going the bleeding again, but I didn’t notice that until I started to wash the sweater and realized I had already bled through the new dressing.  Looking down, I  saw that the top and side of my washing machine had blood all over it. It looked like someone had committed murder in my laundry room. The blood stains below are where I bled on the washer, while I was standing beside it.

 

 

101411cancer

 

I let the kids know the situation, just in case. If I bled to death that night I didn’t want anyone arrested because I took an aspirin 4 days ago.  I also called the doctor’s office and received instructions to lay down, apply pressure, monitor and if necessary go to an ER. It wasn’t necessary.

On a side note. I’ve sworn off aspirin for awhile.

If you are wondering, I haven’t felt a single bit of pain from the biopsy procedure. I kept expecting things to hurt after the local wore off. They never hurt.

Post Biopsy

More waiting.  The biopsy was Friday morning. They told me it would be “a couple of days.”  So I tried to mentally prepare for it as late as Wednesday.  I knew weekends didn’t count.

Saturday – Fine
A little worried about what the results might show, and still wondering what “busy” meant.

Sunday –  Fine
My youngest grandson’s birthday party was at a local park on Sunday evening, and I had a wonderful time. I was relaxed. I was able to answer questions and talk about everything with full confidence that it was all going to be fine.

Monday – Full Blown Panic Attack
I have no idea what triggered it, but suddenly, on Monday, I was terrified of the results, terrified of long term survival chances, terrified of finances all over again, and convinced they were going to tell me it was a stage 4 cancer.  I have no idea why this happened that day.  Maybe I was tired, maybe I let my spiritual guard down, maybe I’d just had one too many people remind me of the doctor they knew that had been wrong. (Some very well meaning people did that, with the best of intentions over the weekend, though must were equally on board with reasons to be optimistic).

Tuesday – The results Are In
I talked to my daughter and son on Tuesday, and confessed to the panic attacks. They both eased my mind. I spent some time talking to my best friend at work about the whole situation, and she also eased my mind. I was going nuts wondering what the results were, but telling myself I’d hear Wednesday, and not to give into the urge to call and nag the doctor’s office.

I’d made my favorite stew in a crock pot and realized I was out of crackers so I decided to swing by the store during my lunch hour to grab some. The call came while I was standing in the middle of the cracker aisle at United Market Street at 19th and Quaker Ave.

My surgeon was kind as he delivered the news, having no idea that I was not in the privacy of my office or home.  He told me he had the results, and that it wasn’t good news.  I braced myself, expecting the words that followed to be stage 4, spread everywhere kind of news.  He quietly explained that the pathology report comes in 2 parts. The initial result and the detailed result.  The detailed report would come in a few days, but at this point they knew the following:

It is an aggressive, malignant cancer, that is probably estrogen based.
The lymph node is confirmed to be cancerous as well.

I asked, “Just that one, or more?”

He said, “Just one.”

I asked, “Is the left breast clear?”

He said, “Yes, it is.”

I asked, “Is it attached to the chest wall?”

He said, “No, it isn’t.”

I asked, “Do you think it has spread beyond that node and the breast itself?”

He said, “We did find a cyst in the liver, and may want to biopsy that some day to find out why it is there, but at this point, we do not believe it has spread beyond that lymph node.”

I said, “I know that you can’t really stage it until you get the full report, but based on what you know so far, from all the tests, am I looking at a stage 3 or a stage 4?”

He said, “Oh, you are definitely a stage 2.”

TWO! Not 4! Not even 3!

So, I asked him what he recommended for treatment, he told me that he wants me to see the radiologist/oncologist before I decide anything.  He feels I need input from “the man who has to fight the battle against the cancer cells themselves”, but he said generally it will probably come down to choices of doing something to shrink it first, then doing some form of surgery (lumpectomy or mastectomy) to cut out the cancer, or doing some surgery and then radiation and chemo.

I asked him, “If I was in your family, what would you tell me?” He said, “Exactly what I just told you. If you were my wife or my child or my sibling, I would tell you that you have to decide what you can bear to live with. Some women choose to try to save as much of the breast tissue as they can, some want to get rid of it all so they can avoid radiation and chemo and never have to think about this again.”

I said, “But they’re wrong aren’t they? Medically? My mother had 2 radicals, and still died of breast cancer. You don’t get to just cut them off and forget them do you?”

He said, “No, you don’t. There will always need to be some treatment post surgery, and cutting them off won’t guarantee you’re free for the rest of your life. It doesn’t work that way.”

I said, “If I opt for a lumpectomy, can you get it all?”

He said, “I have to know the margins.”

I asked, “What do you mean?”

He explained that to me. I won’t explain it here, because I might explain it incorrectly, but what he said sounded totally logical to me, and the answer to the margin question will come later.

The next part of the journey

I saw my general practitioner just an hour after the surgeon called.  This was due to an insurance requirement related to referrals.  They wouldn’t let the referral to the oncologist come from anyone other than the primary care physician, but he also wanted to make sure I understood things.

I appreciated that.  He is a wonderful Christian man, and he was very optimistic. He used the phrase that it was a good thing we caught it early. I told him I didn’t feel like we had, and that I felt like a fool for not having had a mammogram more recently than I had. He smiled and said”

“It is stage 2.  I have lost patients in their 30’s because they found what you found, and chose to try to pretend it wasn’t there. By the time they admitted it might be cancer, it was too late to help them. You are a stage 2, and your oncologist and your surgeon are not just two of the best in the entire state, they work together as a team better than any team I’ve seen.  They care about their patients. They want them to survive. They invest in making them survive, and so do I.”

So, today. I’m at peace. Impatient, but at peace.

My next doctor visit is to meet this amazing oncologist. Our appointment is next Wednesday.

On a side note. I used to work at the Health Science Center, and I still work at the university. I know a lot of brilliant scientists and brilliant doctors, and brilliant researchers.  They all love my doctors’ plan. Those who know my doctors and the centers all say I’m in great hands.

One day at a time, the road winds, but that’s okay.  I’m still traveling. 

Advertisements

A Long Road Ahead

Hilly Road

Fear of cancer has been the monster in the closet of my life for most of my life.  In August 1979, my mother died due after losing a battle with an aggressive breast cancer that was diagnosed in July of 1974.  I’d also lost a beloved grandfather to pancreatic cancer years before mother’s cancer was discovered.  I knew what the disease could do, and I knew what treatment of the disease can do.  So all of my life I’ve had a larger -than-the-average-person fear of cancer.

In October 2016, my fears became reality. I discovered a very large lump in my right breast.  I’d recently taken a fall on a bicycle and the handlebars had caught me on my right breast.  When the bruise wouldn’t go away, I started getting worried and realized that there was a large lump in the breast.  I know that it must have been there a long time, without being noticed, but I did self exams on a regular basis, and it hadn’t been  noticeable just a week earlier.  So I made an appointment with a doctor, hoping that he would just tell me I was paranoid and send me home.  Instead, on October 10, 2016, the doctor said he was concerned, and sent me for tests to be run the very next day.

October 11, 2016 – The Mammogram and Sonogram Results Are already In. 

It is never good to be told “it looks like you might have a cancer, but we won’t know until the biopsy”.  It is even worse to hear, at 4:15 PM, the day after you learn you have a suspicious lump, “The radiologist is really worried, it looks like a large tumor, it looks like it is in a lymph node, and we need to get you scheduled for surgery now! Go back to the radiologist, get him to give you a disc of his results, and take it to this address, that’s the surgeon who will take it out Monday. He’ll meet with you Friday to discuss it.”

Conflicting Medical Reports and Plans:
My doctor said the plan was for the surgeon to remove the lump, biopsy the lump, and then decide if they needed to take the whole breast. This would all take place on Monday, the 17th.

First report:
I was told it was 2 cm, based on the mammogram and sonogram.
I was told it wasn’t touching the chest wall.
I was told it wasn’t in the left breast.
I was told there was a “slightly” swollen lymph, but only one node.

I let my family and my employer know the plan for Monday. This was just a consult, so I told them not to take off work.

I requested prayers from friends and family.

Hope
My fear of cancer combines with my love of research.  If anything about a cancer diagnosis is good, this was all actually good news.  One lymph and a 2 cm tumor in this day and age is very, very beatable. It is low on the cancer rating scales.

I walked into the surgeon’s office confident it would all be fine.

Plan 1 was that this would be a surgical consultation to schedule surgery.  It was a consult with a surgeon, but he had a better plan.

Shattered Confidence
The surgeon  looked at the reports, and did his own exam.

It is not 2 cm.  It is 2 cm by 4 cm.

It might not be in the left breast also, but the original exams didn’t really explore those areas well enough to know.
It could be attached to the chest wall.
The lymph itself was 2 cm.

The only thing all the doctors agreed on was that it looked like a cancer, and that while no one can confirm cancer until they biopsy it,  it met all the other criteria indicative of cancer: rough edges, mass not fluid, swollen lymph.

Given the new size report, and the possibility it had spread and they hadn’t picked that up, I was mildly worried. Okay, I was terrified.  So I asked, “Are you thinking stage 4?” My wonderful surgeon said, “No, not 4. Possibly 3. Definitely at least 2, maybe a 3, but not 4. However, as certain as I am that it is cancer, until we get the biopsy, I cannot tell you if it really is cancer or not.  I can only say it looks enough like cancer that I expect the biopsy will confirm what I already know.”

I admire his honesty, and I admire his optimism, and his insistence on waiting on official clinical news.

Plan 2

The surgeon wanted an MRI to confirm it hadn’t moved to the left breast or lung, and to perform a needle biopsy.  Not exactly a calming suggestion, but he did tell me he didn’t expect to find that it had, he just didn’t want to miss something because it was not on the radar.

I notified family and friends, and set up an appointment.

Pothole in the Road – Can I actually have an MRI?

A few years ago I was diagnosed with eye problems and the eye-doctor had put shunts in to delay sight-loss caused by glaucoma.  Those shunts came with a warning of,  “if anyone starts talking MRI, hand them this card.”  The office doing the MRI wasn’t sure if their equipment was safe for me or not, and had to do some research.

I was sent home with notes that I was definitely having a biopsy on Friday, but it was an Ultra/Sound Guided needle biopsy.  If we could do the MRI they would scheduled it before Friday.

Sink Hole in the Road – MRI’s and Biopsies Cost Money

Many insurance companies try not to pay for diagnostic MRI’s related to cancer. They will only pay if a physician confirms the diagnosis officially, something they cannot confirm without a biopsy.  The Affordable Care Act has caused some companies to pay for them in cases like mine, but the coding has to be done correctly.  Ergo, whether I owed the full price of the MRI myself, or just the co-insurance of $100 plus 20% was the first of a long line of financial worries.

I have good insurance through my employer, but even good insurance has its pitfalls.  At this point in time, I’ve already spent $100 in primary care physician and specialist co-payments.  Even at just $40 each they add up fast when you see your own doctor several times, a radiologist, and a surgeon.

People hear that and think, “pfft, it is just $100.”  However, on my budget, $100 is a lot of money. I’m single and have no outside source of income, but the $100 didn’t bother me as much as the fear of what was to come.  On my insurance I would owe $100 plus 20% of the MRI, and then $100 plus 20% of the biopsy.   I was still paying off eye surgery and dental surgery from the last 2 years.

So I asked what kind of money I was expected to have up front.  This seems like a simple question. I shop all the time and when I ask the price, I get a number. ONE number.  That is not how the medical profession works, apparently.  I was told, “If your insurance will cover it, you only need your copay, and we bill $3,300, but if your insurance doesn’t cover it, we only charge $1,000, but you have to pay $500 up front.”  So apparently it would be either $100 + 20% of $3,300, ($660) or it would “only” be $500.

Five calls back and forth between the facility doing the MRI and my insurance company, and some negotiating and I managed to come up with a figure of $279.00 due on Tuesday with the balance of the $660 to be paid out later.

What about Friday?

Friday,  was the biopsy date.  A this point in time I didn’t know if it would just be a biopsy or if the MRI results would lead them to do surgery on the tumor immediately. (That fear was based on my mother’s experience, and is unrealistic for modern cancer treatment, but was very real to me).

I wouldn’t have a plan until the results of the MRI being done on Tuesday, but I knew that at the minimum the biopsy would cost $100 plus 20% of whatever they decided to do on Friday.

It was all adding up, expense wise, very quickly, and my paycheck was not getting any bigger.  I had no idea what it would all add up to, and no way of finding out until we had an official post MRI plan.  There was no way of planning for the expense.

Panic set in.  The doctor had already told me, flat out, I would do chemo.  Whether it was before or after surgery had not been discussed, but chemo was absolutely in the future.  Chemo medication averages anywhere from $1,000 to $6,500 a month per most of the information I could find.

So I made more phone calls to the insurance company.  The news there was good. I had met most of my pharmaceutical deductible for the year.  Insurance estimated I would only pay about $38 the first month of chemo, and then $10 a month until January.  Insurance was drastically wrong, but I’m glad they were this time.  That news eased my mind. If I had known the reality I don’t know how I would have taken it.

Conclusions at this point:
We need to advocate for simple, straight forward answers to simple straight forward questions.

And most of all, God’s got this.