No News is No News

 

After 3 Taxol infusions, I’m grateful to not be feeling the physical side effects that worried me.  Physically, I’m doing very well.  There’s some fatigue and a general lack of energy.

The worst part is Chemo Brain.  Lack of interest. In anything.  Fuzzy brain. Inability to concentrate. 

After a break for Thanksgiving, my taste buds began coming back, but that was short lived.  Oh, well.

I should be working on the spreadsheet where I track the financial aspects of this little adventure.  There are some interesting aspects of medical insurance, Medicare in my case, and medical providers that aren’t obvious until you get involved in the process.  I plan to write about that, but I’m afraid it’ll be a while before I can put together anything coherent.

In the meantime, I’m doing well.  Considering.

 

 

 

Starting a New Routine

 

Had my first Taxol treatment on Thursday.  I’m scheduled for once a week for 11 more weeks.  This is supposed to be easier than the previous drug cocktail, but a couple of the possible side effects concern me: bone pain, and hand and foot neuropathy.  It’s too soon to be feeling any effects yet, so it’s a matter of wait and see. 

It was nice to have a week off chemo because of Thanksgiving.  A tiny bit of my ability to taste has returned, but eating is still mostly a chore.  The fatigue has lifted a little, too.  I don’t have a lot of energy, but at least I’m not napping as often.  

But the combination of fatigue and chemo brain is still keeping me pretty lethargic.  I’m usually pretty upbeat about Christmas but I haven’t even watched Christmas Vacation or the Grinch yet.  The tree isn’t up, and  we haven’t even bought Christmas cards yet.  I’ll be so happy when this is done and I can get back to being me again.

 

 

 

In a Funk

 

I’ve been in a real funk for the past couple of weeks. Hope it lifts soon. There are plenty of things I need/want to do but I just can’t seem to get around to any of them – even answering emails. 

On the other hand, I have a week off of chemo because of Thanksgiving.  One more thing to be thankful for. 

My taste buds are beginning to come back a little. With any luck the Taxol treatments won’t make them all disappear again.

I’ll post again when I feel less like a slug.

 

 

 

Sadness ...... and guilt

 

Sadness because Neal’s sister-in-law is about to enter hospice care.  She’s spent the last year battling cancer. What a rotten turn of events. 

Guilt because while she’s been suffering through multiple surgeries and other horrible physical indignities, I’ve been sailing along through my chemo with nothing more than a few annoying side effects.  I’d accept a heavier load if it would ease hers just a little. 

I know that life is not fair.  But wouldn’t it be great if it was just a little more fair than it is.

 

 

 

 

I Don't Care

That's it.  I just don't care.  I'm hopeful that this is just the post-steroid crash, but for right now, I simply don't give a rat's patoot.  About anything.

On to chemo Phase 2

 

I’m in my fourth and last cycle of the Adriamycin/Cytoxin   cocktail. In December I begin a new one featuring Taxol. 

Side effects are still mild but annoying. Chemo Brain is more noticeable – general fuzziness and inability to concentrate for very long. Takes me a lot longer to finish a book these days. 

Fatigue is frustrating. I take a lot of naps. 

I’d estimate that I’ve lost about 70% of all hair.  I still have patches where stubble grows on my scalp so I shave it off weekly.  I cannot imagine what it would be like to have only patches of hair here and there if I didn’t shave. Have not worn either of my wigs yet. 

 White Blood Cell count is still an issue but I don’t go out much these days so I’m hoping that will be enough to minimize the opportunities for infection. 

My biggest complaint is still my non-functioning taste buds. Eating is more of a chore than anything.  I could whine about this for days.  My chemo treatments are on Thursdays so the Thanksgiving holiday gives me an extra week off before I start the next drug.  Maybe the extra time will give me a chance to taste Thanksgiving dinner. 

I’ve been concerned about possible Taxol side effects – mostly neuropathy and bone pain.  But my concerns have eased after reading an article stating that the protocol I’ll be on should minimize those.  I’m scheduled for 12 weeks of once a week infusions as opposed to the protocol calling for four or six weeks of Dense Dose infusion. I’m hoping that the lower dose over a longer time will be relatively easy.  My oncologist says it will be.   

Trying to decipher the insurance paperwork is an interesting challenge. I’ve learned that just because a hospital is part of the insurance network, doesn’t mean that its contract staff is also part of the network.  I’ve incurred more “out of network” costs than expected.  But that’s another post. 

All in all, things are going well.

 

 

 

The Cost of Cancer Part 2

 

Here are links to two articles that address the high cost of cancer treatment. But costs like this are not limited to cancer. Twenty-five years ago I had a friend who was dealing with kidney damage resulting from diabetes and who was being charged $4,000.00 per month for one of her meds.  The most common reason cited for these prices is that the manufacturers must be able to recover their costs of research and development.  But I don’t think that it is quite that simple. 

In this short article from Medline Plus, the author points out that nearly two-thirds of all personal bankruptcy filings are due to medical debt. That’s astounding!  We’re not talking about a bunch of spendthrift deadbeats here.  These are people who are doing their best to cope with a serious, perhaps deadly, disease.  It is a also a call for physicians to begin to tackle the sensitive topic of cost with their patients.  Between physician reluctance, and a patient’s possible embarrassment, that won’t happen overnight. 

This longer article from New York Magazine takes a deeper look into the cost issues and it really blew my mind.  It begins by discussing a newly approved cancer drug that can increase life expectancy by 42 days. 42 days! Six weeks! This new drug provides exactly the same results as another drug that’s been available for some time but is twice as expensive as the older equally effective drug.  Using the new drug, the cost of an additional 42 days of life could be as much as $75,000.00. 

Oncologists were initially aghast at the idea that they consider cost when prescribing treatment.   

This whole thing has raised so many questions in my mind that I’m not sure where to begin. 

I guess the most important one to me is quality of life.  Knowing what my Dad went through during the last 6 weeks of his life, I suspect that adding another 6 weeks would have been a hideous punishment. How do we make these decisions?  Are our physicians capable of dealing with these issues?  Everyone’s situation is different, but I’d like to think that I’d opt for quality over quantity.   

What about oncologists and other medical specialists? Are they too focused on the disease to consider the whole patient?  Is it a matter of ego?  “My treatment was successful.  The fact that the patient is now bankrupt and/or homeless does not detract from the results of treatment.”  Yeah, I know that’s probably an exaggeration, but I’m ticked off.  There seems to be a grandiose Ivory Tower mind-set that deems only the technical details of treatment worthy of discussion. Will that ever change? 

Ok, I’m off this soapbox for now.  Sorry if this was rambling and incoherent but I wanted to get it off my chest.

 

 

 

 

 

 

 

General Update

 

Things are still going well in my third chemo cycle.  White Blood Cell count 0 again at last blood work.  Moderate fatigue mostly, but I expect to crash again for a couple of days this week.  Low energy. 

I’ve been going “commando” as far as my head is concerned..  Neal comfortable going out with a baldy so I’m just letting it all hang out. 

The worst part is not being able to taste anything.  Meal time is pretty much just fuel intake.  I really miss being able to appreciate good food.  Neal is doing a beef stew today and it smells wonderful but I’ll never know how it tastes.  Bummer.

 

 

 

 

A Real Fake Boob!!!

 

My surgeon finally gave me the OK to get a breast prosthesis.  This is a big deal. 

The mastectomy “training bra” I’d been wearing has only a very lightweight cotton puff to try to fill the empty space.  It’s better than nothing for going out in public, but it has no real support so it still gives a pretty lopsided effect when paired with a droopy 70 year old boob.  I’m still wearing mostly the t-shirts and knit shirts I wore living on the boat and they highlight the mismatch.  So I’ve been borrowing a few of Neal’s shirts which are big enough and hang loose enough to sort of camouflage the disparity between right and left sides. 

But now I have a “real” fake boob. 

Breast prostheses are silicone forms that have both shape and weight to simulate a natural breast. 

Mastectomy bras are pretty much like regular bras except that each cup has an extra layer of fabric to provide a pocket to hold a prosthesis.  

So now I go out looking like the old me  again  – except, of course, for the bald head.

 

 

 

Hair loss (lost)

 

I’m officially in cue-ball mode for the next several months. 

I’d thought that I’d wait until the hair loss became obvious, but it became a big nuisance right away.  First noticed it in the shower and then, overnight, every time I turned my head on my pillow I’d get hair in my mouth and/or nose. Hair brush took more out. Just running my fingers through my hair took more out.  

So I had it all shaved off.

 

 

Just think of the money I’ll save on shampoo and conditioner! 

Sometimes hair comes back with a different texture than before. Sometimes it comes back curly and stays that way but sometimes it eventually goes straight again.

I wonder what I’ll look like at this time next year.

 

 

 

 

Side Effects (will be updated from time to time)

10/25/2013

Crash

Thursday, October 17 was my second chemo treatment – day 1 of the second cycle.  No problems.  Until Monday, day 5. Everything was great until late afternoon. Then CRASH.  I was in bed by 7:00 p.m. Monday night. Tuesday and Wednesday I probably slept almost 20 hours each day. I was completely useless. By Thursday afternoon it was back to normal.  Very weird.  Thursday’s blood work showed a White Blood Cell count of 0.  No surprise there. 

So far the most annoying side effect is not being able to taste anything. Neal asks what I’d like him to cook, but it doesn’t really much matter as long as it isn’t crunchy.  Crunchy stuff hurts.  

 

All in all, I’m very lucky so far to still have mild side effects













10/19/2013

Shaved my head.  There's a separate post called "hair loss (lost) with before and after pics

10/17/2013

Side effects are setting in but they are still mild. 

My taste buds have pretty much stopped working.  If you’ve ever had that numb feeling after burning your tongue with hot coffee, etc. that’s more or less what it’s like but all over.  Bland stuff has no taste at all.  Aromatic foods like onion, garlic, and some herbs stimulate my sense of smell and a sense of flavor.  Neal made Rosemary Chicken the other night and I savored every bite. 

My mouth is getting quite tender but I haven’t developed any sores yet, thank God.  It’s bad news because I love crunchy things, but it hurts to eat them. I let my Cheerios get good and soggy. 

Last week when I had blood work done, my white cell count was 1.  It should be 14 – 16.  I got a stern warning about not ignoring any fever.  I also got a prescription for a high dose of Cipro antibiotic to try to fend off any infection.  This one scared me.  But I feel good and my temperature remains normal.

I’ve finally begun losing my hair.  I don’t think it’s very noticeable yet, but a couple of more shampoos will probably take care of much of the rest of it; and I’ll have the stragglers shaved off. The good news here is that the American Cancer Society offer free wigs, scarves and caps to cancer patients. (Also bras) They’re new and come in about every color, length and style. I got two. Photos will follow in a later post when I figure out how to style them. There's a hairdresser in town who will provide one free styling - I'll probably give him a try.

 

 

 

 

Genetic Counseling & Testing

 

Given the amount of cancer in my immediate family and on my mother’s side, my oncologist referred me to genetic counseling.  Of greatest concern are the BRCA1 and BRCA2 genes.  These genes normally help protect against breast cancer but a mutation may, in fact, increase the cancer risk.  The mutation may be inherited from either parent; or it may be spontaneously generated in an individual.  A daughter or son who inherits this mutation is at risk and may, in turn, pass it on to the following generation.

So I filled out a family history for the genetic counseling group and had a long teleconference to discuss family medical history.  The goal was to determine whether there would be a benefit to having genetic testing.  This is a topic that my daughter, Karen, and I have discussed at some length.  We are both concerned about the likelihood of breast cancer in her future.

I’ve decided not to proceed with testing from this genetic counseling/testing group.  Here’s why.

• Although there were many cancers among my mother’s siblings, only my mother and one of her sisters were diagnosed with breast cancer.  My maternal grandmother was not diagnosed with breast cancer.
• Running computerized analysis models, it seems that the probability that I carry one of these mutations is less than 5%.
• Further conversation about family health issues brought out another possibility:  Cowden Syndrome which is a problem with the PTEN gene
• The test in question looks ONLY at the BRCA1 and BRCA2 genes – I’d get no information about PTEN.
• This test costs about $4,000.00.  My insurance would pay all but $375.00 of that.  But I’d get only a small part of the answers I’m seeking.

But even if I did come up positive for the mutations, there’s no way of knowing whether my kids inherited it unless they also get tested.  There’s no way that their insurance would cover even part of the cost for either one of them.  They still wouldn’t know if they have the mutation.

So what to do?

23andMe may give the best information for a truly reasonable price - $99.00.  I sent for the test kit.  I don’t know whether they test PTEN, but they do test for other diseases which may be connected to Cowden Syndrome.  And they test BRCA.  If I have the mutation, this is something my daughter can follow up on without going broke.

And as a bonus, I’ll get some good info about my genetic ancestry.  Were my ancestors always Poles?  Just how much Neanderthal do I have in me?

Where did I really come from??? 

 

.

 

First Chemo Treatment

 

The first Chemo day went very well – once the snafu at the reception desk was resolved.  Someone had apparently crossed off my name as though I’d already been called.
 

First my Oncologist again reviewed the possible side effects, and emphasized the danger of infections.  She’s committed to reducing side effects when it is possible and dealing with them quickly when they occur.  I have 3 prescribed anti-nausea drugs in addition to the one administered by IV plus steroids, plus anti anxiety meds. My own little pharmacy.. 

Side effects range from Annoying to Dangerous. 
At the bottom of the scale,Annoying ones include hair loss and skin and nail issues.  Next up the scale are the ones that can be managed such as insomnia, headaches, and bowel issues. Then come the tolerable but unmanageable ones like mouth sores. The lining of your mouth consists of fast growing cells – the ones killed by chemo drugs. Discomfort can be eased a little, but not eliminated. The Dangerous one is infection.  Chemo drugs attack all fast growing cells and that includes bone marrow where blood cells are born.  This leaves a chemo patient susceptible to infection.  A temperature above 100.4 is deemed a medical emergency.

Then it was off to the Chemo lounge.  There are rows of recliners, each with its own IV pole. There are also chairs for drawing blood, and chairs for those who are accompanying the patient and want to be near.

First they draw blood for an analysis to make sure that administering the drugs will be safe.

I’ve got to say than having an implanted infusion port is worlds better than having a needle stuck in a vein over and over.

Once the blood test is done and is ok, it’s off to a recliner. The nurse hung 3 IV bags and hooked them up so that she simply had to turn one off and the next one on.  First is a combination anti-nausea drug and a steroid.

The steroid also has anti-nausea properties, but is primarily anti-inflammatory as well as medicine for autoimmune diseases and some skin conditions.  Skin problems are a likely side effect of the chemo drugs. 

Next is the Adriamycin, known among chemo patients as The Red Devil.  When that’s finished, the Cyclophosphamide.  This whole thing takes a couple of hours.

They taped up the needle and tube in my port because I’d be going back the next day for an infusion of fluids and a shot of Neulasta.

So on Friday, I showed up for my fluids and shot.  After filling your body with toxins one day, you’re supposed to be spending the following two days guzzling water to get them all out of your system.  My Oncologist helps ensure this by ordering a fluid infusion on day 2.  They pumped a liter of fluid through my port.

Neulasta is a drug to help rebuild the blood cells killed by the chemo drugs.  It is given as a shot in the arm.

So as of now everything is good.  No side effects have shown up yet.  I go back next week for blood work, and then the following week for the next chemo treatment.

Just waiting for the other shoe to drop.

I wonder how long it will be before I start losing my hair.

 

Next step: Chemo

 

Saw my Oncologist this afternoon and I’m ready to start Chemo on October 3.  It will take 20 weeks in total.

 

The good news is that the PET scan detected no spread of the cancer. That, taken together with the pathology report from the mastectomy means that it is highly likely that I am, at present, free of cancer. 

So why have chemo? Triple-negative breast cancer has a much higher rate of recurrence than other breast cancer.  It also has a high rate of redevelopment later as bone or liver cancer.  A recurrence is likely to be incurable.  Given the size of the tumor that was removed, my Oncologist strongly encourages chemo. . This is my second bout with cancer so I’m not going to press my luck any further. 

Chemo will keep me busy going back and forth for infusions and blood tests. I’m going to need a DayTimer again! 

I had an infusion port implanted when the mastectomy surgery was done.  I have a Bard Power Port http://www.bardaccess.com/port-powerport.php 

There will be two stages.

(Go to www.chemocare.com if you want to know more about the drugs mentioned here.)

Beginning on the 3^rd, and every other Thursday for 4 cycles (8 weeks) I’ll receive an infusion of Adriamycin and Cyclophosphamide, two cancer fighting drugs.  The next day I go back for another infusion that’s mostly just for hydration, but will also include Neulasta to help stimulate growth of white blood cells. In the non-infusion weeks, I go in for blood tests.

After that, there will be 12 weeks of weekly infusions with Taxol.

And they all have side effects.

• I’ll lose my hair
• Possibly have nausea or vomiting
• Be fatigued
• Possibly be constipated
• Possibly have diarrhea
• Possibly have both diarrhea and constipation.  One woman on a cancer forum I frequent said that she’d found herself having both.
• ???

Whooopppeeeee!!!!!

Oh well, the sooner it starts, the sooner it ends.  I’m eagerly looking forward to March, 2014.

 

 

 

 

Inquiring minds want to know: How does it feel to be missing one boob?

Mostly it doesn’t feel much different. Physically or emotionally.

It sure looks strange, though. 

If I were 20 years (or more) younger, it would probably have had a much different emotional effect.  When I was still conscious of my sexual image, this physical loss would have been more difficult to handle.  I’m very glad that I didn’t have to cope with it then.  But two months before my 71^st birthday, sexual image is a just a memory.  I’m far beyond high heels, push-up bras, short skirts, etc.  The beach will never see me in a bikini again (and hasn’t for many years now).

But I do want to present a public image of normalcy.  I got my first “training bra” last Friday.  The first post-mastectomy bra is a very soft cotton affair that has pockets on both sides for a pad.  (It also has a pocket to hold my drain). The pad is very soft so as to not irritate the incision. So I don’t look lopsided. That eliminates any self consciousness Here’s a pic from a catalog.

 

Once I’ve healed sufficiently, I’ll graduate to bras that look like “normal” bras like this one.

 

These also have pockets on both sides. Instead of just a pad, I’ll have a prosthesis that has approximately the same look, feel, and weight as a breast. The prostheses come in various sizes so I should end up looking pretty balanced.

The good news is that Medicare covers the cost of up to 6 bras and 2 prostheses per year. 

Eventually I’ll also get a bathing suit that has pockets for my fake boob, but Medicare won’t pay for that.

The bottom line is that, everything considered, it’s no big deal.

 

 

 

 

PET Scan

 

I had a PET (Positron Emission Tomography) Scan on Tuesday to try to determine whether my cancer has spread. Here’s a Wikipedia article: http://en.wikipedia.org/wiki/Positron_emission_tomography    I won’t know the results until my 9/26 meeting with my Oncologist.

Apparently a PET scan is different from other scans in that it detects changes at the cellular level.  http://my.clevelandclinic.org/imaging-institute/imaging-services/pet-scan-hic-pet-scan.aspx

And it is based on sugar.

I’d wondered at the prep instructions: a zero-carbohydrate diet the day before the scan.  And no caffeine within 12 hours before the scan. No exercise the day of the scan.  Here’s how it was explained to me.

Cancer cells are very fast growing; thus they need a lot of nourishment. At the cellular level, sugar is nourishment.   They want you to go in with relatively low blood sugar.  They also want your body to be as calm as possible, therefore no stimulants such as caffeine; and no exercise that would get your muscles active and looking for nutrients.

You get an IV injection of a sugar solution that contains a radioactive tracer. Then you rest for about an hour. Again, no stimulation: no reading, no writing – you just relax in a recliner in a dimly lit room. It takes about that long for the solution to circulate throughout your system.  

After that you are positioned on the scanning bed and the scan begins. Depending on the area being scanned, it can take from 30 to 60 minutes.  My scan was from base of the skull to my femur heads – took about 40 minutes, I guess.

I was relieved to find that the scanner itself is a relatively short tube with a large diameter so claustrophobia was not an issue.  You just lay there and let the bed carry you through the tube while it takes pictures of your insides.  Any fast growing cells needing nutrients will glom onto the sugar and its radioactive tracer and will show up in the pictures.

I’m not glad that I needed the scan but it was an interesting process.  I hope I get to see the pictures.

 

 

 

 

 

 

Post-Op exam ---- and some bureaucrat bashing

 

Saw my surgeon for the post-op exam. He says everything is looking good. The pathology report indicates no residual malignancy.  Made me very happy.

 

Your tax dollars at work:

Additionally, he told me that the pile of paper I got when I was discharged from the hospital is a Medicare requirement.  A hospital is obliged to present all of this “educational” material.  If the hospital does not comply, they risk losing payment from Medicare.  Some committee of bureaucrats has decided that I need education on quitting smoking even though I don’t smoke. 

There was a “Teaching Sheet” for each of my over-the-counter medications such as Glucosamine and multivitamins.  Each one has an opening paragraph that is nothing but a disclaimer stating that the sheet is a summary only and does not substitute for the advice of a physician.  Then the rest of the sheet is BLANK.

There should have been a top sheet explaining how to avoid getting angry over this waste of resources.  That, I could have used.

 

 

 

Staff cutbacks? Nursing shortage? Incompetence?

 

So I came out of my mastectomy with a huge horizontal incision where my right breast once was, and a Jackson-Pratt drain http://en.wikipedia.org/wiki/Jackson-Pratt_drain installed. On the left side, I had an infusion port for upcoming chemotherapy.

Although I’d expected to go home after the surgery, I was admitted to spend one night in the hospital because my surgeon expected me to have significant pain.  I even had a morphine pump.

The nursing staff got me all connected and then checked on me every couple of hours for the rest of the afternoon.  They checked my drain and emptied the collection bulb once.  By that time it was clear that I was having NO pain and my biggest problem seemed to be frustration with the lack of anything worth watching on TV.

When anyone looked at the drain again, it was empty. Knowing nothing about what to expect, I assumed that was good  - that no fluid was collecting at the surgery site.  The nurses, in retrospect, should have known better.

What really kept me from a good night’s sleep was not the occasional visit by a nurse, but by the incessant dinging of other patients calling for a nurse.  I have no idea how many RNs and LPNs were on duty, but there were certainly not enough to handle patient demand. 

I don’t know what is an acceptable nurse/patient ratio, but I’m sure it wasn’t the case here.  Why?  Pencil pushers setting standards for care?  Shortage of nurses??? 

If you read the previous post, you know that I was not discharged until mid afternoon on the day after surgery.

I was given oral instructions to empty my drain’s collection bulb twice a day.  

I was given 13 pages of discharge instructions and educational info.  12.75 pages of which were general information and thus utterly useless. 

WHAT I DID NOT GET

Someone who might have thought that it was unusual that no fluid was draining out; and who might have at least asked someone more knowledgeable if it should be looked at further.

Any discharge instructions specific to my situation – mastectomy, drain, port implant.   (After my earlier lumpectomy, the outpatient surgery center gave me very clear and specific instructions.)

WHAT HAPPENED NEXT

The surgeon had arranged for Home Health Care so on Sunday a visiting nurse came to see me.  My drain still wasn’t draining and I still had no pain.  I declined to continue with Home Health Care.

Monday morning, my favorite nurse “S” called to ask why I’d declined the nursing service.  After I’d explained, she commented that perhaps the drain was clogged. (That thought should have occurred to me, but it never did.)  She asked if the area around the drain was swollen.  It was. But I still didn’t catch a clue.

As we were getting ready to go out later that morning, I inadvertently pressed on the swollen area and released a deluge of fluid – not through the drain tube, but from where the tube was inserted. What a mess!  I called S and she called the nursing service.

Another nurse came to see me and did what should have been done before I left the hospital.

She flushed the drain which freed the clog.  Much draining ensued.

She explained that not only should I empty it twice a day, but I should measure the volume of fluid and keep a log so that the surgeon can have some information about how things are progressing. The hospital gave me a vial for emptying the fluid but said nothing about measuring and logging.

ALL’S WELL THAT ENDS WELL

The drain is working.  I know what to do.

It was a very frustrating couple of days.

At first I was upset with the hospital nursing staff because no one thought my lack of draining was unusual.  Then, considering the constant ding of nurse call bells, I came to fault the hospital for inadequate staffing.  Nurses are run ragged with too many patients to look after.  How can there not be lapses in attention and care?  It’s a very unhealthy situation for everyone.

 

 

 

Final surgery is done

Friday’s surgery went well but I didn’t get to go home immediately after.  There were two procedures: simple mastectomy on the right side and had an infusion port (for chemo) implanted on the left side.

 

My surgeon had me stay at the hospital overnight because he was expecting that I’d be in significant pain.  So they hauled me upstairs and set me up with a morphine pump through my IV.

I never used it.  The area involved in the surgery was completely numb.  In fact as I write this more than 24hours after the surgery, it is still numb so I’m still having no pain.  Be nice if it would stay that way for a few days.

So this morning I waited eagerly for the Doc to do his rounds and officially discharge me.  I waited and I waited.  My nurse said that sometimes he comes late on Saturdays.  By 2:30 this afternoon, Neal called the Doc to see what was up.  Turns out he’d had an emergency this morning that tied him up for a few hours.  So he finally gave the go-ahead for my discharge. 

Hanging around a hospital room when you don’t need to be there is not fun.

It sure is nice to be home.

 

 

A beautiful heart

 

I have a beautiful heart! So said the ultrasound technician who did my echocardiogram today.  It’s nice to hear good news from a medical person. He said I must take good care of myself. No.  But apparently my heart is in excellent condition anyway.

This test was necessary because some chemotherapy drugs can have negative effects on the heart so it is important to know the heart’s condition going into chemo.

It was fascinating to be able to see and hear my own heart at work – the steady beat, and the whoosh of blood flow.  Very nifty.

And one more thing crossed off the to-do list.

 

 

 

Radiation Oncologist on Board

 

Had a consultation this morning with my Radiation Oncologist(RO).  I like her! She seems to be really on top of things and she gave me very clear descriptions and explanations of everything. 

She uses Tomotherapy which is relatively new.  Wikipedia has a good section on it here: http://en.wikipedia.org/wiki/Tomotherapy which includes a photo of the equipment.  Radiation won’t begin until after chemotherapy is complete.

I’m a happy camper today because I feel that I have a very good team of Oncologists to get me through this process.

And the RO’s office was able to light a fire under my surgeon’s RN to get the next surgery scheduled.  This RN who I’ll just call “S” has an attitude problem – she is imperious: seems to feel that she’s the boss in that office and that includes being boss of his patients. When I spoke to S on Friday afternoon and said that I figured that the mastectomy and the port installation could be done at the same time, she told me that “we don’t do that”.  For one thing, the mastectomy will be on my right side and the port will be put on my left side.  I mentioned that my whole body will be available during the surgery.  She then told me that it would be at least Wednesday (day after tomorrow) before she could even talk to the doctor to discuss scheduling the surgery.

When I told the RO that the surgery was not yet scheduled, she got her staff deal with it. 

Surgery will be on Friday (the 13^th) and will include both procedures.

In S’s defense, however, the RO did tell me that many times insurance companies will not pay for both when two procedures are done at once. That floored me!  What kind of lame bureaucrat thinks that it is better to incur cost on two separate occasions when one could be eliminated by performing multiple procedures!!  If there’s any logic there, it escapes me.

Anyway, that’s one more item checked off the to-do list.

 

 

 

 

 

Let's get this show on the road!

Nothing has changed, but I definitely feel better today after meeting with my Medical Oncologist.   She’s very focused and seems to be very knowledgeable.  Everything I’ve learned about her has been positive.

First comes the surgery. I’ll have a mastectomy – but can’t even do the scheduling for that until next week.

Then comes the chemotherapy.  Preparation for that begins next week with an Echocardiogram.  The following week I have a PET scan to see if there’s been any detectable spread of the cancer.  The week after that I meet with the Medical Oncologist (MO) again to plan the chemo. Because my cancer is triple-negative, she needs to do some work to decide which drugs will work best.  I expect (hope) that I’ll have had the surgery before my next appointment with the MO.

I’ll also have a consultation visit with a Radiation Oncologist next week even though that therapy won’t begin until I’m done with chemo.

I’ll also be meeting with a genetic counselor because of the extensive history of cancer in my family.  At my age, I don’t expect to get any personal benefit from this counseling, but I do expect to acquire information that will be valuable to my kids.

Just getting the process started has a positive effect on my frame of mind.  I may have mentioned before that I’m not good at waiting.  In my ideal world, I’d have the surgery tomorrow and then get started on the chemo after a few days of healing.

I’m not looking forward to chemo. I expect it to be quite difficult.  But I’ve always said that I can put up with anything as long as I know it is temporary.  This will be my opportunity to see if I can really pull that off.

In the meantime, I have a schedule of appointments which means that the wheels are finally turning.  Forward progress!!!

 

 

 

 

 

More surgery is needed.

Had my post op visit with the surgeon – the news is not good.  The tumor was much larger than he expected it to be, and the margins were positive for cancer. Additionally, the surgery pathology report states that there is lymphovascular invasion.  I’d never heard that term so I did some research and found a clear explanation on Dr. Susan Love’s Research Foundation site: http://www.dslrf.org/breastcancer/content.asp?CATID=28&L2=1&L3=6&PID=&sid=132&cid=1104

The surgeon was upset that the pre-op imaging indicated a much smaller tumor – just over 1 cm; but what he found was more than 5 cm.  He doesn’t like that kind of surprise any more than his patients do.  If he’d known its true size, he’d have sent me for chemotherapy before surgery to try to shrink it.

When they do a lumpectomy, they remove the tumor and a certain amount of the tissue that surrounds it – called the margins.  This margin tissue is analyzed for traces of cancer. In my case the margins contained tumor cells.

So there’s more surgery to be scheduled.  I have two options. 

• He can go in and remove more tissue hoping that he gets it all. The down side is that if the margins are still not clear, a mastectomy will be the next step, for a total of 3 surgeries altogether.
• I can have a mastectomy and simply have all of the breast tissue removed.

Seems like a no-brainer.  Just do the mastectomy. I can handle that.

But what has me concerned today is what I read about lymphovascular invasion (LVI). This can be present even when the lymph nodes are free of cancer (as in my case).  But the implication is that the disease has begun to spread. The further implication is that the cancer has mutated in such a way that it can create its own blood vessels and thus spread itself. Not a happy thought.

So today I’m a little bummed.

Tomorrow morning I meet with a Medical Oncologist.  Originally this visit was to discuss post-op chemo and begin setting that in motion, if necessary.  Now that meeting takes on a much different aspect.  With any luck I’ll have more and better information by this time tomorrow.

I’ll post again then.

 

 

 

 

Surgery

The bottom line is that the surgery went well and there is no lymph node involvement.

The pre-surgery activities were quite a production.  Since the surgery was at Indian River Surgery Center, an outpatient facility, I had to go first to Vero Radiology to get wired.  Yep, wired.

Using ultrasound to locate the tumor, a Radiologist inserts a thin wire with a tiny hook at the end into tumor.  This makes it easier for the surgeon to precisely locate the tumor. The wire is inserted through a needle. In my case, my surgeon prefers to have the need left in place rather than removed.  The theory is that it will keep the wire in place.

With the wire inserted, the technician taped it down and sent me off for a mammogram.  Unfortunately, in manipulating the breast to get a good picture, the needle came out.

Back to ultrasound to have it re-inserted.  Then back for another mammogram. This time everything stayed in place

Then back to ultrasound to prepare for mapping.  This involves four injections of a radioactive dye. (These hurt like big bee stings.)  The dye will move to the primary lymph node.  The surgeon can then locate this node using a Geiger counter and it can be removed and sectioned for biopsy.

The wire is about 4 inches long and could be taped down easily if it were not for the base of the needle sticking out.  So I ended up with a Styrofoam coffee cup taped over it.  I’d worn one of Neal’s button front shirts, but I had to button it around the cup.  You can imagine the looks I got as I left through the Radiology waiting room.  If I’d had a cup taped to the other side I’d have looked like a aged Madonna.

Off to the surgery center.

Everything went smoothly at the surgery center. I woke up with a 3 inch incision on my breast, and another 3 inch incision under my arm where they removed 2 lymph nodes for biopsy.

No stitches.  No gauze dressings.  Both incisions were closed with N-butyl-cyanoacrylate.  Medical Superglue!  That means that I don’t have to worry about wound care (except for icing any swelling) and I can take showers.  Very nifty.

I was at home by 1:30 in the afternoon.  Spent a couple of hours sleeping off the anesthetic.   So next week I see the surgeon for a post-op exam and then have my first meeting with a Medical Oncologist.  That’s when the real “fun” begins, I guess

Karen and the Wild, Wild, Breast

This is my daughter, Karen’s, 10th year participating in the Susan G. Komen Walk for the Cure in the Twin Cities.  She alternates years walking and crewing.  This year she’s a member of the Tent & Gear crew. She gets to drive a truck this year in addition to handling everyone's gear and setting up tents.

The cowboy hat goes with the theme for this year’s crew.  Here’s the Tshirt

 

It’s a grueling event for the walkers – 60 miles in 3 days; and a lot of hard work for the crew hauling around everyone’s gear and setting up and organizing tents.

I’m proud of Karen for her 10 years of steady support for breast cancer research.  I’m proud of all of the participants for their efforts.

Biopsy Pathology Report

I got a copy of the pathology report from the biopsy.  It didn’t tell me much more than I already knew.

The triple-negative result led to additional testing which confirm a diagnosis of Basal like Breast Cancer.  After doing some online research about Basal like Breast Cancer, I don’t really know any more about it than I did before I started.

Apparently one school of thought equates TNBC (triple-negative breast cancer) and Basal like Breast Cancer.  Another set of researchers say that all TNBC is Basal like, but not all Basal like is TNBC.  These cancer subgroups have been identified only in the past several years, so there’s just not enough research yet to be definitive.  If you can explain it to me I’d be grateful.

I’m Grade 3 on the Nottingham histological score which means that it is a rapidly growing tumor.  I’d already figured that out just by feeling it over the past month or so.

The question that I’m most concerned about is whether there’s lymph node involvement; but that won’t be known until the surgery.

 

Waiting. Waiting……

The Cost of Cancer - Part I

Ok, so now I’m scared. Not about the disease – about the potential cost.

 In many cases breast cancer is treated with surgery followed by radiation therapy. Triple-negative breast cancer, however, generally calls for a cycle of chemotherapy followed by radiation.

Chemo drugs can be unbelievably expensive. I’ve read that drugs can be $3,000 to $9,000 per injection!  And in some states, insurance does NOT cover cancer drugs that are given in pill form; but covers that same drug if given by injection.

Why does chemotherapy that costs $70,000 in the US cost only $2,500 in India?

http://www.theatlantic.com/health/archive/2013/04/why-chemotherapy-that-costs-70-000-in-the-us-costs-2-500-in-india/274847/

 Why do chemotherapy drugs cost so much?

http://www.takepart.com/article/2013/05/09/cost-of-chemotherapy

From the above article on takepart.com:

“But research is not even the biggest expense. The U.S. pharmaceutical industry spent 24.4 percent of each dollar of sales on promoting the drug, as compared to 13.4 percent spent on research and development, according to a 2008 study in PLOS Medicine by York University researchers who collected data from the pharmaceutical industry and physicians.”

I don’t know about you, but I could certainly do without so many (none would be good) TV ads for Viagra and Cialis.  Given the huge revenues of the drug companies, even moving 1 or 2 percent of every dollar to R&D would make a big difference.

But I really don’t know what to expect.  I guess that’s what scares me. Until the surgery I don’t know what stage it’s in or whether there’s any lymph node involvement. 

Today’s the 20^th.  8 more days to surgery and some answers.