Today is my wife’s second (of four) chemotherapy appointments. She is sitting right now at the Norris Cotton Cancer Center at the Cheshire Medical Center here in Keene, NH, with an IV of toxic drugs flowing in to her.

Many friends have contacted us/her wishing her all the best today… hoping it all goes well… relaying that they are thinking/hoping/praying all the best for her.

All of which is VERY much appreciated.

The truth, though, is that today is really not bad.

Today is really just incredibly… well… monotonous.

Boring. Tedious. Whatever word you want to pick.

This has been a fascinating revelation to me who knew nothing about chemotherapy before this all began.

Here is the snapshot of our day…

We arrived at the hospital at 9:30am. A little before 10am we were brought back into the chemo treatment area were she sat down in a comfortable recliner-type chair. A nurse drew some blood samples that were sent off to the lab and then proceeded to get some vital signs and other normal tests… and then we waited for the lab work to come back.

Once the lab results came back fine, they set up the IV with some anti-nausea medicine, some saline, etc, etc, and give that to my wife for a while. There was some other medication my wife had to take an hour before the actual chemotherapy chemicals began, so she had to take that and wait.

Sometime after noon, they administered the first of the two chemicals that make up my wife’s “cocktail”. It ran for over an hour dripping into her bloodstream through the IV line.

After that was all finished, they hooked up the second of the two chemicals… and that will run for 45 minutes. After that she may be done… I don’t quite honestly remember if they did something else. She’ll probably be ready to go home somewhere around 2:30 or 3pm.

But this is what “a day of chemotherapy” is like.

Sitting. Waiting. Sitting. Waiting. Sitting. Waiting.

For hours.

They have individual TVs there, of course. And she and I talk now and then. The anti-nausea medication makes her kind of tired, and so many of the patients, her included, take a nap for a bit… or just don’t feel overly talkative. Friends have stopped by for a visit, which is a nice distraction. You can get (or bring in) food and drinks. A volunteer came by offering Reiki massage. They have free WiFi so you can use the Internet with your computer (which is what usually I do… sitting there doing work while my wife rests).

But overall it’s just a long tedious day of sitting and waiting.

If her experience this time is like the last time – and like what we understand from others in the process – this afternoon/evening she may be a bit tired from the drugs but overall okay. Tomorrow she will probably be fine. Wednesday morning she may be fine.

And then sometime on Wednesday the hell will start.

The chemicals will be doing their deed of killing cells and the body will be reacting. And then will come the pain, the sickness, the fatigue…

… which will pretty much continue straight through the weekend and on into next week…

We’re hopeful with some new medication that this time around it won’t be quite so severe, but time will tell.

Today, though, is all about the monotony of the injection of the drugs.

Sitting. Waiting.

Sitting. Waiting.

Image credit: drhenkenstein on Flickr

No question perhaps highlights the frustration of breast cancer than the one I am frequently asked:

So how is Lori doing?

You see… physically she is doing perfectly fine.

At least… she has been doing perfectly fine up until today when they will inject her with various noxious, toxic chemicals to make her worse so that in the end she will theoretically be better.

This is the conundrum of early stage breast cancer.

There are no physical signs.

You are not “sick” in any noticeable way.

You feel perfectly fine.

In fact, my wife is probably in the best physical shape she’s ever been in. She’s walking 5-6 miles a day and just in great shape all around.

Physically.

You would have no clue that inside her MAY lurk a few random cells that can morph and evolve in such a way that they can cause other problems and even death.

It would be much easier in so many ways if she was sick in some way. With some other forms of cancer, the pain and sickness are very apparent.

You are sick… therefore you need drugs and other treatments to make you better.
Simple. Easy.

But with early stage breast cancer you have no signs.

You are dealing entirely with hypothetical situations.

The studies say that you have a 60% chance of not having cancer after 10 years if you do this.

The studies say that you have a 70% chance of not having cancer after 10 years if you do this.

The studies say that you have a 90% chance of not having cancer after 10 years if you do this.

With again the reality that

you might not have any cancer in you today…

… if only we had some way to know.

But we don’t.

And so, as a friend said to me this morning, we are “going on faith“.

Faith in the medical system. Faith in the doctors and nurses who have been treating her – and all the research and analysis they have done. Faith in the scientists who have performed all these studies and spent the long hours in their research. Faith in the accuracy of the very human people who have been administering all these fancy tests – and in the designers behind all the software and systems.

Faith in the fact that this course of treatment that will make her very sick in the short term will give her better chances in the long-term.

Going on faith.

It’s insanely frustrating, but in the end it’s all we have…

Well, at least we have an answer. We are no longer stuck in limbo.

The results of the testing I mentioned in my last post on my wife’s tumor came back… and unfortunately not with the results we’d hoped for. It turned out that her tumor was slightly more on the aggressive side… and that they best they could estimate was that if she did nothing more there is only a 60% chance she’ll be cancer-free in 10 years.

She’s only 43 years old… 10 years is not a long time.

… and 60% is not really a great percentage.

So after much discussion and research she begins a four-month round of chemotherapy tomorrow, which will then be followed by five years of a hormone therapy once the chemo is done in December.

In theory, the hell we are about to endure for the next few months plus the five years of daily Tamoxifen will together raise the chance of her remaining cancer-free to over 90% at the end of ten years.

90% vs 60% … not hard to argue with those stats.

But of course the irony continues to be that she could be cancer-free right now… and won’t need the hellacious drugs, fatigue, sickness, hair loss and other horrible side effects.

But we have no way of knowing…

And so it begins…

Image credit: M.Markus on Flickr

Waiting sucks.

There is no other way to say it. More polite phrasings simply do not convey the correct emphasis. Waiting sucks.

And now… we wait.

Two weeks ago we visited my wife’s oncologist to learn what would be the treatment options for her breast cancer now that the mastectomy was done. Naively, we thought based on what we had heard after the operation that all we would really be talking about was whether or not it made sense for her to start taking a hormone drug, Tamoxifen, for the next five years. There are some various medical history issues that raised some questions about that… so we thought our discussion would be about that.

The oncologist at our local hospital sat down with us for what turned out to be most of 2 hours. She walked us through my wife’s pathology report and started out talking about all the positive aspects of the report… but with an unspoken “BUT…” hanging out there… until the “but” was spoken… and a word we thought we’d never hear was voiced:

“Chemo”

We figured with the tumor rather drastically removed (since the entire breast is gone) and the sentinel lymph node coming back clear, we were done with any thoughts of chemotherapy.

And we may be… or chemo may be back on the table.

Unfortunately, my wife’s tumor turned out to be invasive breast cancer and as such there is a danger that it could spread into other parts of the body and morph into other forms of cancer. The “sentinel” lymph node was clear, meaning that there was no sign that cancer was regularly spreading into the rest of her body… BUT… there is always the chance that a small amount of the cancerous cells could have already spread into her body and not left any sign in the lymph nodes.

The oncologist had an interesting viewpoint:

My wife will never have as little cancer in her body as she does right now.

It took me a moment to wrap my brain around that one. The reality is that with the tumor gone and with the sentinel lymph node clear, odds are that IF any cancer made it out into the rest of the body it is only out there in a tiny amount – and has not yet started to attack other cells.

So now is the time to do everything possible to kill it.

Hence considering chemo as an option.

Of course, the insanely frustrating aspect of all of this is:

There may be ZERO cancer cells in my wife’s body!

They may in fact have been completely removed with the tumor. But there is no way to know… and it comes down to what level of risk you want to assume and how comfortable you are playing the odds that the cancer is gone.

Hence the waiting.

They are doing another round of blood tests and actual tests on my wife’s tumor, specifically an Oncotype DX test, to help provide more data to determine whether chemo would really help fight the specific cancer my wife had/has. It turns out that for a certain % of women, chemotherapy really isn’t that effective, for a certain % it is very helpful, and another % is in the middle of those two sides.

Into which category does my wife fall?

For that we wait… “7-10 business days” is how long the test takes once they get her tumor… and while you are waiting that seems like an agonizingly long time.

And so we wait.

And wait.

Stuck in an unwelcome purgatory… unable to make concrete plans for the next few months… unable to understand what our future holds… paused in a limbo where life seems to be on hold – even while the everyday life around us must continue.

Just waiting for a call that says the test results are in and we can sit down and start to understand what comes next.

Waiting sucks.

And so we wait…

Image credits: mag3737 and 25182350@N03 on Flickr.