A Visit to Oncology: The Good, The Bad, and the Ugly

We met with the medical oncologist today. It was okay. It was SUPER frustrating. It was sad. There is much to report, but also much that remains unknown. I am trying to process everything and writing it all down seems as cathartic a response as any. So, without further ado - my Wednesday in evaluative thirds:

Good:
My current cancer is strongly responsive to estrogen (97%) and moderately to progesterone (64%).

Good:
I'm post-menopausal, thanks to the hysterectomy and oophorectomy of 2010. Therefore, I'm eligible for a course of Arimidex. Depending on if you prefer scientific or generalized internet writing, Arimidex can either be considered an aromatase inhibitor or hormonal chemotherapy. It's an oral medication to prevent the cancer from spreading and I'll take it for 5 years as an initial treatment and then a possible 5 years more after that. 

Bad:
The Arimidex won't make me lose my hair, but the main side effect is joint and bone pain. It can cause bone loss, which I learned is called osteopenia. Disappointingly, it's not the result of the spell that Gilderoy Lockhart casts to mend Harry Potter's broken forearm after a particularly nasty quidditch spill. That's something else entirely and it requires a medication called Skele-gro which no one even offered to me. 

I'm scheduled for a DEXA Scan, which stands for dual-energy X-ray absorptiometry. It will give us a base line for how strong my bones are or aren't so that we can monitor their porosity. Bones are supposed to look like honeycomb under the microscope. If mine look more like nerve synapses then we become concerned (or kind of impressed)? If I start breaking bones from sneezing or sitting down too aggressively, then I guess we have a problem.

Ugly:
My oncologist told me that I should institute a low carb diet for the next five years, as Arimidex has a tendency to make women gain weight. 

"How much?" I asked. 
"Do you really want to know?" he answered with a grimace.
"Yes."
"10% is the average. It could be less ... but it could be 20%." 

Come on! I don't want to tell you my weight, but I will say that 10% is not a negligible 5 pounds. It's significant. I told the doctor that I wasn't interested in gaining 10% of my body weight. He didn't seem to think that my objection would make a difference to the medication. 

Good: 
The invasive ductal carcinoma is grade 1. That is the slowest growing type of cancer.

Bad/Good:
There was also some DCIS (ductal carcinoma in situ) in the sample. DCIS is considered a grade 0 and is sometimes called pre-cancer. If left untreated, it will become invasive cancer. Some of that was found and was removed during the surgery. Is there more still hanging out in there? Unknown. 

Ugly:
The pathology report says that the "gross description" of the sample is "4 Fibrofatty core biopsies." That's just mean. I like French fries. I can't help it. Don't pick on me.

Ugly:
I don't want to be rude, but the lab report says that my case was "seen in consultation with Dr. Lundberg." I didn't meet Lundberg, but her/his name sounds suspiciously like Lumberg, who is the villain from the movie Office Space. I'm concerned. 

Bad:
The oncologist I saw today is not the doctor that I had in 2010. I loved that doctor, but he moved out of MN, I think back to his native country of Germany. For the last several years I have been seeing this other oncologist who is fine, but not the same as the guy who held my hand through the misery of Cancer 1. I see him once a year for follow-up and have always considered him to be acceptable. Today, he was notably sub-par. 

He asked me if I just had a mastectomy. "No. I had that 12 years ago."

He asked me about the lymphadenopathy and lymph surgery that I had in 2014. "That's when Dr. Petryk thought I had lymphoma, but it was later determined to be lupus."

He asked me if I am post menopausal. This was the killer.
"I had a mastectomy in 2010." (I pointed to the medical-gibberish on the computer that I have learned to decode.)
"A mastectomy doesn't mean that you are post-menopausal."
"An oophorectomy does. I had an oophorectomy in March of 2010. It's right here on the screen."
"Ooh. You're right. That's exactly what it's called when they take out your ovaries."
Me (in my head): "I KNOW! I'M NOT AN IDIOT. SHOW ME THAT YOU ARE NOT AN IDIOT OR WE ARE GOING TO SEE IF I STILL KNOW HOW TO DO TAE KWON DO."

I do, by the way. I have nun chucks and am not afraid to use them on anyone ... or on cancer.

Good:
Because I have had cancer twice and am young (medically speaking), it is concerning. My oncologist wants to do genetic testing on my healthy cells to see if there are any answers hidden in my DNA. The tests will tell us if there is possibly a genetic mutation with which I was born or some other reason that this is happening. His exact words were: "You're too young to have already had a cancer and a recurrence. Something is not right."
I agree.

Good:
The oncologist also ordered oncotype DX testing. This is a detailed look at the cells of the cancer tumor to determine several things, most importantly among them is the benefit that chemotherapy would offer to my specific cancer. I had this done in 2010 and the result fell into the intermediate category.  In 2010, it was determined that chemo wouldn't be beneficial. This time, we will see. I won't learn that until early June when I go for a follow-up appointment.

What else? Oh, right. Laila and Owen got hit by a semi truck this morning on their way to school. It was a low speed impact. They are both okay. The car is likely totaled. 

I guess that's it. I'm going to finish the trashy reality tv show I'm half-watching and go to bed. Tomorrow is a regular work day and then Friday is 2 hours with radiology. So, more to come I guess. 

Thanks for your support.

Liz

Conversations with Liz - The Paparazzi Version

When I started this blog in 2010, the main objective was to share the details of my cancer while I was home recovering. Friends, co-workers, and geographically distant family said that they wanted to be able to keep tabs on my progress without calling all the time and interrupting my naps. This was a wise plan, as a nap-deprived Liz is a cantankerous Liz. It's best to be avoided.

I had the initial surgery and was out for five weeks. Then I went back to work for a week of feeling human before I went back under the knife and was out for another six. During all of that time, it was really helpful to employ this digital format for medical information dissemination. 

In 2022, things are different. We all text more than we talk in person. Texting provides an easy, unobtrusive way to check in on each other and allows the recipient the ability to respond whenever it's convenient. (Although, to most of us "convenient" had better mean within 42 seconds ... or else a subsequent, slightly more irritable message will be deployed). 

Texting is great for me as a patient, because I can see all of the love that you are sending without having to pause my Netflix binge to answer the phone or the doorbell. P.S. Ozark finale is being released tomorrow, so don't even bother trying to call. I'll send you right to voicemail. 

2022 is also different because my surgery was much easier and the recuperation much faster. As a result, I went back to work yesterday. I'm only managing half-days, but that is enough to get my mind focused on fundraising and communication for a few hours before I come home to nap and think about cancer some more. Half-days are also enough time for lots of people to come to my office to offer support and ask questions. So, I thought I'd use this archaic blog forum to answer some of the most popular for you.

Friend, "How are you feeling?"
Me, "I feel okay."

This is true. I do feel okay. But things are all relative. I like to think of the surgery I just had as a bee sting and the one from 2010 as a shark bite. Bee stings are annoying. They don't feel good and you wish they didn't happen. But, you take some Advil, ice the site, maybe have a glass of wine and then move on with your life. Shark bites, though, involve hundreds of stitches, blood loss, skin grafting, and muscle atrophy. That's basically what I went through when I was 34. In comparison, this is okay.

Friend, "How did the surgery go?"
Me, "It went well."

This is true, too. The wound is small and seems to be healing perfectly. The anesthesia was manageable and I don't think I threw up on anyone when I woke. I don't really remember, but I assume that I asked clever and medically appropriate questions about the details of the procedure and the cellular structure of a cancer tumor, but right now all I remember is that they told me I wouldn't be able shower for two days. Incidentally, this is why I now have a sizable collection of surgical hair nets in my possession. Apparently, I was concerned about how I would look - to my family and dogs - going without a shower. My semi-lucid brain thought that wearing a hair net around the house would be less conspicuous than bed-head. I was incorrect, for the record.

Scott and I went to see the oncology surgeon on Tuesday. I was prepared for the worst, which doesn't mean I'm a pessimist. It just means I have a memory. My minimal Google research told me that 25% of lumpectomies result in the need for a secondary surgery and my first bout with cancer was within that stupid quartile. So, I expected it would be again. Not so! The dissected part of Liz that made a trip to pathology was rolled around in some dye and shockingly - to me at least - the tumor cells were within the obligatory 1mm margin from the dye. So, that is what we call a success. It is also what I call suspicious, because my history doesn't involve a lot of success, but I'm trying to be cheerful about it. 

Friend, "What is the next step?"
Me, "I go to see the medical oncologist on Wednesday and then the radiology oncologist on Friday."

Accurate. I do have those appointments. I also don't know much more than that. The Wednesday appointment will address medications, hormone blockers, and chemotherapy (which I don't expect to need, but am bracing for). The Friday appointment will address radiation treatment (which I have been told is the standard of care for a breast cancer recurrence and I do expect).

How much? How long? How often? I don't know. Will I feel okay or need to take time away from work? I don't know. Will there be more scans or will I start treatment right away? I don't know. Will I be well enough to go to Laila's graduation? I had better be or else I would advise everyone in the vicinity invest in ear muffs to drown out my incessant swearing. 

Friend, "How are you doing?"
Me, "I'm fine."

Nope. This one is pretty much a lie. Sure, I'm technically fine in the literal sense of the word. I'm not inconsolable and unable to get out of bed. I'm not so weak and enfeebled that I can't care for myself. I haven't come down with a post-surgical infection necessitating a hospital stay. But, I'm really sad. I don't know what is coming and I do much better when I can plan. I don't understand how one wayward cell could have the power to make this happen again and what could possibly prevent me from feeling like it's just going to keep happening forever. Cancer blows.  

I Don't Even Know What to Say

 

I can't believe I'm doing this. It's been so long since I've posted on here that I've completely forgotten how to do it. I wish that I didn't need to re-learn. I wish that I didn't have anything to report. I wish that I wasn't sitting here reliving the nightmare that I survived 12 years ago, but I'm clearly not in charge. I have had a recurrence. It's the same cancer in the same spot. It's still stage 1. It's still estrogen-receptor positive. And apparently, it's completely and totally resistant to a bi-lateral mastectomy, a hysterectomy, and five years of Tamoxifen. What a stubborn, tenacious, cellular jerk. 

Things have moved faster this time. In 2010, I found the lump myself and then it took six months, 3 ultrasounds, 2 mammograms, 2 gamma scans, 1 MRI, and 1 biopsy for the doctors to confirm what I already knew. It was a lot of waiting, a lot of confusion, and a lot of inconclusive results. My 2022 cancer experience has been markedly different. Here is a run-down:

March 26 - I noticed a lump in my left breast that felt like it maybe had aspirations to kill me.

March 28 - I called my oncologist (because I have one on speed dial. Doesn't everyone?) It was determined that the lump was likely scar tissue and the best course of action was to see my plastic surgeon.

March 29 - I went to see my plastic surgeon (because I also have one of those on speed dial). He felt the lump and right away agreed that we should treat it seriously and swiftly. He is one of my favorite physicians in the history of healthcare, by the way. If you need a referral, do let me know.

April 1 - I went to have an ultrasound, during which the radiologist recommended a biopsy that could go one of three ways:

1. Needle in, biopsy out. Easy-peasy. Lemon squeasy

2. Needle in, implant punctured. Oopsies all around.

3. Needle in, tumor is at an angle that is too hard to reach. Mission aborted.

I decided to go ahead with the procedure, hoping for scenario 1, but knowing that we could easily encounter 2 or 3. Six biopsies each the size of a grain of rice were taken. The implant was not damaged.

April 4 - I waited ALL DAY for results and finally decided that I didn't want to relive the 2010 diagnosis experience that occurred in my office cubicle. So, I went home. That evening, I got the call that it was not scar tissue and was, instead, a recurrence. SHIT. I screamed that into phone to my doctor. I swore ... out loud ... to a medical professional who was trying to help me. Then I apologized. Then he said, "it's okay. I swore, too."

April 5 - We went to see the oncology surgeon and learned that the best-case scenario was that I would have surgery and 4-6 weeks of radiation. Awesome. Super. I'm so glad to be here again. Worst-case scenario was that the cancer had spread to other parts of my body and was now incurable. Oh. That's less awesome. I see the difference, now.

April 8 - I went in for a PET scan. It showed that the cancer is contained to my breast which is news that caused waves of jubilation from all of those around me but I just kept thinking ... so what? I still have cancer.

April 20 - Surgery. My surgical oncologist took out the 6 mm tumor encased in 14 mm of my tissue that was not supposed to be inhabitable to cancer. And now you're up to date. I'm waiting for the appointment with my surgeon to tell me if we have clean margins. I'm waiting for the appointment with my medical oncologist to tell me if I will have radiation or chemo or both. I have cancer again. I did EVERYTHING I could to punch it in it's stupid little cancer face the first time and now ... I HAVE IT AGAIN. 

It's unfair. It's infuriating. It's demoralizing. I am consumed with sadness and anxiety and guilt and fear. How many times am I going to be expected to do this? I took it the first time, understanding that statistically 1 in 8 women will have breast cancer in their lifetimes. Me having cancer means that 7 women in my family and friend circles won't. So, I took it. I shouldered it. I attacked it and did everything in my power to eradicate it. And, now, I'm sitting on the couch with an ice pack in my bra again. 

What the hell? I mean, seriously. WHAT THE ACTUAL HELL?

It's Not a Vampire Bite

On Monday, Scott and I went to see a head and neck surgeon at the University of Minnesota.  We were referred to him (and squished into his busy schedule as a result of ) our good friend Bill, who also works as an ENT at the U.

At our request, Dr. Khariwala removed two more lymph nodes for a second biopsy.  His idea was to perform a needle biopsy, which is much less invasive than the surgery, of course.  On the downside, if a needle biopsy comes back negative, then you are unsure if the lymph node is negative or if the needle missed the cancer cells.  As a result of our history, we opted to have the whole thing taken out right away.

So, on Tuesday, I went in for another surgery.  It went very well, considering that the goal was to slice out part of my neck.  It was a general anesthetic surgery, so yesterday was spent dealing with the after effects of having a breathing tube down my throat.  Today is much better.

Now I'm recovering from the biopsy in my armpit and a new one by my left collarbone.  It's not terrible.  I've certainly dealt with much worse.  Plus, it gives me a chance to take a bunch of Vicodin induced naps and catch up on my trashy reality shows.

Plus, this week is a totally different waiting game from last week.  With the first biopsy, we were trying to confirm lymphoma.  It was a terrible, heartbreaking and anxiety filled several days.

This time, though, Scott and I feel like we are trying to rule out cancer.  Two negative biopsies would be a pretty clear indication that this isn't lymphoma.  So, maybe next week's results will bring us that.  We also hope to find out more about why I have symptoms, if they aren't associated with cancer; which is why the pathologists at the U are looking for EVERYTHING.

Half of the sample went to the pathology lab and the other half went to the microbiology lab.  With luck, they will find something like a bacterial infection or an autoimmune disease.  And if all of that doesn't solve the mystery, then I also have a rheumatologist reviewing my case and an appointment with the infectious disease department in two weeks.

So, we are confident that an answer is on the way.

Go science!

Sorry That You Have Cancer ... Or Maybe Not

As you perhaps have heard, my biopsy results came back negative.  For those of you not well versed in the lingo of medicine, this is good.  Negative means that nothing of note or terror was found in the sample.  So, YAY, right?

Not so much.  Or maybe yes.  Oh, damn.  I can't say.

I'm glad that I don't have any detected cancer.  That's good, of course.  But, why then do I have swollen lymph nodes, a low white blood count, hair loss, changes in my vision and a PET scan that shows abnormal amounts of intake in the lymph nodes of my neck, abdomen, armpits and groin?  Am I just supposed to ignore these symptoms and findings, because the biopsy was clean?

Maybe a normal person would.  But I'm not a normal person.  No, no.  Don't argue.  We both know it's true.  I am quite abnormal in most instances, but especially in my medical history.

I had breast cancer when neither my mother nor grandmothers had it.

I had cancer when I was only 32, way below the age during which mammograms are recommended.

It took 6 months to diagnose my breast cancer.

While performing the mastectomy, my surgeon sliced a hole through my flesh - FROM THE INSIDE!

I did not heal as expected from the surgery, necessitating a blood transfusion.

As a result of morphine, I developed a tortuous amount of itching all over my body.

One week after the initial surgery, I got a call from the surgeon letting me know that it was possible that they missed the tumor entirely and took out a second one that they didn't know wast there.  I had to go back in for another surgery, even though I was too weak to open my own car door.

My hysterectomy scar came open, thus causing my ob/gyn to report that while the one incision was "an A, the other was a C plus."  Mm hmm, mm hmm.  Very comforting.

I had a nipple reconstruction that resulted in necrotic tissue and eventual loss of the nipples.

Although my results of the nipple reconstruction were far from ideal and the bedside manner of Dr. Dreyfus was abhorrant, there was nothing I could do about it.  My litigiousness was thwarted by a well respected attorney ... who happens to be the father of one of my old boyfriends.  Incisidentally, I had to provide him with photos of the nipples and the failure that ensued.  This is not at all an embarrassing endeavor.  Oh, wait.  I misspoke.  Yes, yes.  It is embarrassing ... and humbling ... and mortifying.  

When I told my oncologist that I was experiencing bone pain, he had to leave the room to look it up.  It turns out that only .02 % of cancer patients report the kind of symptoms I had.

Based on lab work and symptoms of clawdom, I  was diagnosed with Sjogren's syndrome.  (This is a disease that is often found in conjuncture with arthritis.  It was found when I complained of my being able to hold my toothbrush or walk down the stairs.)

I contracted Lyme's disease, without traipsing through the woods.

I developed an allergic reaction to bacitracin.

My implants were so close to the surface of the skin that they caused visible rippling of the tissue.

A simple surgery to remove and biopsy a mole on my neck turned more difficult, due to the fact that the incision popped open as I ran through a deluge of rain in the parking lot.  I had to go back in and get it  re-stitched.

Two weeks ago, when I called my optomitrist to complain that I couldn't see far away things (like whether or not my daughter was in the room) he said: "that can't happen.  The dilation drops don't do that.  It's impossible."  Oh, not possible?  I see.  (Or rather, I don't see.  I can't see anything.  There inlies the conflict.)


So, based on my history, it makes sense that I would have a scan that shows numerous areas of concern, but that the biopsy shows nothing, doesn't it?

Do we cheer?  No cancer!

Do we cry?  We got the wrong lymph node and have to do another biopsy!

Who knows?

Maybe someone, but I'll tell you who doesn't: my surgeon and my oncologist.  Their responses to the clean results were, respectively,

• "Don't worry.  If you have cancer, it would have been in the node I removed.  It was the biggest one.  I don't know why your PET  was positive, though."
• "Good news!  The scan showed no cancer.  I was sure that it was lymphoma, but it came back clean, so that's good news.  I can only be as certain as the test results, though.  You could have cancer in another part of your body."

Right.  Well, thanks for that.  I feel absolutely out to sea, now.  

And what does a Minnesotan do when they feel that their medical conundrums are not being solved?  They call the Mayo Clinic, of course.

Want to know how that went?  I'll tell you.  Aftter approximately 57 minutes (or maybe 8) of questioning and data input in the great Mayo database, my registration associate (who sounded about 12, if you want to know) told me that he would try to get me in to see neurology, as soon as possible.  WHAT?

Me: "Why would I see neurology?"

Pre-pubescent phone kid: "Well, that's the department that comes up in the computer for lymphoma."

Me: "Yes, but lymphoma is cancer.  I should see someone in oncology."

Pre-pubescent phone kid: "The computer doesn't show that as an option.  It says that the departments that see patients for your condition are: neurology, dermatology and hematology."

Me: "Well, I'd like to see someone in oncology."

Pre-pubescent phone kid: "Hmm.  Do you want me to check with them to see if this is something they would do?"

Me: "Yes.  That sounds like a good idea."

SERIOUSLY?

Dermatology?  

What if I was an idiot?  There are several in our world, you know.  What if I didn't know anything about anything and was a passive follower/patient.  Then I would make an appointment with a dermatologist only to learn that lymphoma is, in fact, an internal disease.  And, because it's Mayo, I would have travelled to the appointment to meet with the "Pimple Popper MD."  

If you didn't catch that reference, then you aren't a very good Seinfeld follower ... and I pity you.

So, now I'm at a crossroads.  And those closest to me are loitering there along side of me.  Should we rejoice in the negative?  Should we be scared that the biopsy missed what is obviously there?

It's confusing.  It's disheartening.  It's suffocating and bewildering and nauseating.  

We don't know what to think, and (although I realize this is a totally stupid thing to say) it would have been nicer if they had just found lymphoma this time around.  Then, I could start with chemo and start kicking this crap in the ass.  (Plus, I was really looking forward to cutting my hair, which continues to fall out at an alarming rate)

I don't like waiting.  

I don't like the unknown.  

I don't like hanging out on the steps between death row and freedom, without knowledge of how I got where I am or where I will next go.  

It's infuriating ... and calming ... and then frightening ... and then relieving ... and then maddening.  

Nothing Yet

We can't believe that we're taking this photo again.

Two years ago, it looked like this:

        Remember?

Anyway, the lymph node biopsy went well today.  The surgeon was able to remove one from my armpit, instead of his original plan to take one from my neck.  So, that's nice.  I didn't really want a scar on my neck.

And now, it's just a waiting game.

We should have some results Wednesday or Thursday.  Today is only Monday, if you hadn't noticed.

I've already got my next shirt picked out.  It says "I beat cancer" on the front and "twice" on the back.  Stupid lymphoma.

Waiting is hard. :(

I Quit

I thank all of you for reading this blog, but, frankly, I'm tired of writing it.  I'm tired of having diseases to report and illnesses to detail.  So, I would like to propose this to be my last post.  Of course, if I have a cancer recurrence, then all blogs and other forums for complaint are up for renewal, but for now they are cancelled.  

Before I leave you, though, I would like to let everyone know that God has seemingly struck me down again.   This time the weapon of choice was a deer tick, which I found and removed on last Saturday.  On Thursday night, I had trouble sleeping, due to the fact that my house was apparently 42 degrees.  It turns out that my internal thermostat gauge was l little off, due to my 102+ degree fever.  When I woke on Friday, the tiny bite mark from the tick, who has aspirations to grow to be the size of a sesame seed, was red and angry looking.  

So, I went in to the doctor ... although, in retrospect should a person with a high grade fever be driving a motorized vehicle?  Probably not.

My doctor told me that I probably had Lyme Disease, but that the blood work would most likely come back negative, as it takes 4to 6 weeks for the body to process a positive result to the titer.  So, by the time I am ready to show a positive result, I will have been on antibiotics for several weeks, thus interfering with the test, anyway.  So, now I'm on a strong and long dose of antibiotics.  I'm also on a crapload of pain meds to reduce the fever that makes me alternately feel the need to sleep under a down blanket with a sweatsuit on and the need to put my head in the freezer to stop the sweating.  

Also, I have a growing "bullseye rash" at the site of the tick bite.

I'm not happy about any of this.

Most specifically, I find it ridiculous that I still have things to report on this blog.  When it started, I was receiving pressure from people at work to create a caring bridge site.  Liz has cancer ... Ooohh!  I thought that everyone could be well served by a cancer blog.  But, I never guessed that my cancer blog would turn into a failed surgery blog ... and then another failed surgery blog ... and then a lupus/arthritis blog ... and then a Lyme Disease blog.

Is it difficult to even believe me?

I'm not making this crap up.  I wish I were.

But, I'm done.  It's time for someone else to take on these fights.

I'm out.