Monthly Archives: October 2016

Winding Roads

 

winding-roadThis is post 2 regarding my journey with breast cancer. I share it in hopes that others as new to this experience as I am now,  can read it and know they aren’t alone, and maybe realize what to expect if they are a little newer to this journey than I am.

The MRI was scheduled for Tuesday, October 18th The biopsy was scheduled for Friday, October 21st.

No one could tell me what to expect to be done on that Friday, financially speaking or medically speaking.

So I waited.  Cancer is a lot of hurry up to wait.

The MRI

I was sent to a wonderful center for women that was set up by a former breast cancer patient, who happens to also be a medical doctor.  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 – I have no clue what the MRI results are.

My MRI was late in the afternoon on a Tuesday. The MRI was meant to provide more info to my surgeon before my biopsy that was scheduled for the first thing Friday morning. However, 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’d get them to rush the reading.

Thursday I got a call that 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. 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?! I never got an answer to the what.

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 still didn’t know if they meant to do a biopsy and lumpectomy or just a needle biopsy or what.

Financial Plan for Friday
When I asked how much money I needed for Friday I heard, “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.”

My family had helped me with the first round of expenses on this journey, and my daughter set up a GoFundMe campaign to help pay for more of it. People were kind and generous, and amazing, and wonderful, but it takes days to transfer money around, and we didn’t know if it would make it into the accounts by Friday or not.  So, our family plan of action was, if they asked for more up front than we had Friday 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 MRI 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.

The Biopsy Itself

My surgeon is very professional, but also very charming, and he carefully explained every step of the process as he prepared for each step, 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 a little 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 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 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.”

My daughter scooted me off to the lady’s room and we discovered I was trailing blood all over the lady’s room, and looked like I had bathed in cranberry juice.  I was perfectly dressed for a Halloween horror film.

There was no pain, but 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.

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 of the reaching to start it going 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 also 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.

 

 

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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 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 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 on Tuesday, and confessed to the panic attack. She 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 cracker, so I decided to swing by the store during my lunch hour to grab lunch. The call came while I was standing in the middle of the cracker aisle at United Market Street at 19th and Quaker Ave.

My doctor 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 reports 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 be in the final biopsy report.

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. 

A Long Road Ahead

Hilly Road

In August 1979 I lost my mother to a highly aggressive breast cancer.  She had been diagnosed in July 1974, with many promises, over and over, that they had it all.  I’d also lost a grandparent to pancreatic cancer.  I saw what the disease and the 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, I discovered a very large lump in my right breast.  I know that the reality is that it was there and I didn’t notice, but I check often, and it certainly wasn’t noticeable just a week earlier.  I’d recently fallen while riding my bike, and the handle bar had caught me in the same general area, so I assumed I had some under-the-skin bruising and swelling going on.  When it didn’t go away, I decided to look into. On October 10, 2016, the doctor said he was concerned, and sent me for tests to be run the very next day.

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, “Your radiologist is really worried, it looks like a large tumor, 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:
I was told by my doctor that 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.

I was told that according to the mammogram and sonogram it was 2 cm.
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 swollen lymph, but only one node.

Plan 1
I let my family and my employer know what was going on so everyone could take off Monday.

I started some prayer chains.

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, 2 cm tumor, today 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.

Shattered Confidence
The surgeon  looked at their 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, but they didn’t exam the left well enough to know if it is or isn’t.
It could be attached to the chest wall.
The lymph itself is 2 cm now.

The only thing they all agree on is, it looks like a cancer, and while no one can confirm cancer until they biopsy it, they can confirm it meets all the other criteria. 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?” He said, “No, not 4. Possible 3. Definitely higher level 2 at least, 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.”

Plan 2

The surgeon wanted an MRI to confirm it hadn’t moved to the left breast or lung.
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.

First Pot Hole in the Road

I learned from him that many insurance companies will not 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.

We also weren’t sure I could have one. I had shunts put into my eyes to release pressure as part of treatment for an eye disease a few years ago. It comes with, “if anyone starts talking MRI, hand them this card,” warning.

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 can do the MRI they would scheduled it before Friday.

Sink Hole in the Road – Paying for all of it

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 co-payments.  They add up fast when you see your own doctor twice, a radiologist once and a surgeon once.

People hear that and think, “pfft, it is just $100.”  However, on my budget, $100 is a lot of money. I’m sure it is for many people.  I had a lot of surgery on my eyes the previous year and was still paying off those.

So I asked about what kind of money I was expected to have up front, and was told, “Oh, just the copay.”  Well, the copay for an MRi is $100, plus 20% of the cost of the MRI.  So when they called to say, yes, I could have the MRI with my eye shunts, I asked, “what is the cost?”

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. If your insurance doesn’t cover it, we only charge $1,000, but you have to pay $500 up front.”

Five calls back and forth between them and my insurance company and I managed to come up with a figure of $279.00 due on Tuesday afternoon.

What about Friday?

Friday, I have  the biopsy.

I might have a lumpectomy on Friday or a radical on Friday as well. I don’t know.
I won’t even have a “probably” plan until the MRI on Tuesday.
But the procedure there is also $100 plus 20% of whatever.

I have no idea what that might add to up, and no way of finding out, so no way of planning for it.

The doctor has told me, flat out, I will do chemo.  Chemo medication averages anywhere from $1,000 to $6,500 a month.  So, more phone calls to the insurance company.  The news there, for me, is good. I’ve met most of my pharmaceutical deductible, so I’ll have to pay about $38 for the first month, then $10 a month until January. In January, the new insurance year starts, and I’ll be paying $50 a month.  I have a few months to plan for that though.

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.