Life Changing Decisions and Emotions

Sheila and I just arrived back home from the hospital again. 

We spent much of the day at the hospital yesterday with a visit to Sheila's Oncologist and we had to go back first thing this morning for a bone density scan. We're both exhausted but I thought I would add a few updates about Sheila's treatment before taking a nap.

For the past couple of weeks, we had been waiting on test results which would classify the risks of Sheila's specific cancer (in both the tumor in the breast and the lymph nodes). This classification would help us (including the medical team) make the decisions about specific treatment plans. Actually, the wait for these test results seemed like a couple of months and this unexpectedly long wait has definitely affected Sheila emotionally. 

Although few people see it or realize it, all chronically ill patients go through a series of emotions which is a bit like being strapped to an emotional rollercoaster. Most times, these patients will carry on with their "normal" lives and appear strong in public. On the other hand, sometimes what appears to be strength may actually be a very fragile and thinly veiled front being held in place only by a bit of stubbornness and anger at the failing health and loss of their "normal" life. Other times, usually only in private, there are some rather dark moments of grief. This is all normal and it is an ongoing process which needs to evolve in order to get beyond it. The true courageousness and strength comes from adeptly managing this emotional rollercoaster without falling off. If you fight it, rather than willingly manage and navigate through it, you never get beyond it and beyond it is a much easier and a much more peaceful place to be.

Additionally, fighting this emotional rollercoaster is utterly exhausting... and... let's be honest... it is impossible to win this fight. It's a wild rollercoaster!

The more time and effort you expend in putting up a front built on stubbornness and anger, the more precious energy you are wasting which could be used more wisely. The more energy you waste, the more exhausted you are and the more susceptible you are to worsening health as well as susceptible even to outbursts of uncontrollable grief. You need to save as much energy for healing your health so willingly processing and getting beyond this grief needs to be as natural and fluid a process as possible. Anything less and you are burning much needed energy.

At this point, this emotional rollercoaster has Sheila overwhelmingly fatigued and exhausted. Unfortunately, treatment has yet to even begin which is when even more energy will be needed to compensate for the energy that will be sapped from her body in treatment.

Sheila has been silently anxious and fighting her emotions while waiting for these latest test results. This particular wait has really gotten to her and increased her anxiety level significantly. Subsequently, she hasn't been sleeping and she's been very "teary" through this waiting period. Her lack of sleep is affecting everything at this point... her health, her ability to effectively communicate, her ability to easily accomplish the usual things at home as well as at work. Sheila is so exhausted that I suspect she is even having difficulty seeing all these obstacles created by her fatigue. 

In the elevator...

This anxiety and lack of sleep has also caused some embarrassing situations at work because little things which normally would mean nothing are setting her off emotionally. 

Watching all of this unfold in front me has been a little frustrating and definitely heartbreaking because I've been trying to coax her into willingly process these emotions so she can get beyond them. Naturally, I'd like for her to be happy, carefree and full of energy! I know I'm doing a pretty good job at getting her to laugh and smile most times because I see it on her face but I could clearly see that she was still holding back a cascading waterfall of grief and building some sort of protective emotional wall around her emotions. This has not been something which is easy to watch because I can see how much it is draining her of much needed energy... energy needed for today and energy needed for tomorrow and energy needed throughout treatment and recovery. Fortunately, the oncologist quickly noticed this behavior yesterday and immediately added some grief counseling into Sheila's treatment plan.

This counselor is someone I know and I highly recommend for any type of grief counseling. Actually, Sheila and I even discussed this exact option pertaining to this particular counselor before the Oncologist even mentioned it. This counselor, herself, has survived Stage 4 breast cancer so she is intimately knowledgeable in the grief, obstacles and difficulties every chronically ill patient faces. Both Sheila and I are very excited that she's been referred to this particular counselor.

The fact is, just getting another hospital visit behind us and discussing the rest of the treatment options with the Oncologist was very therapeutic for Sheila too.

That was the first bit of good news from our latest hospital visits this week.

The next bit of good news is that the test we had been anxiously awaiting over these past couple of weeks shows that Sheila's cancer is in the "low risk" category as we had hoped. It is still cancer and it is now the second time around but this really is great news. 

There are some additional factors which also play into whether or not chemotherapy is advised but the Oncologist recommended no chemotherapy this time around based on all of these factors as well as statistics. That was good news, but...

Emotionally, Sheila is experiencing a bit of mixed emotions with this news. She is certainly excited by the prospect of not needing to experience chemo again but she was also afraid of making a mistake in turning down the option of chemo. 

What if cancer popped up again in the near future? 

Would she feel terrible and be filled with regret after choosing to forego chemo this time around? 

Would a chemo treatment have avoided a third occurrence? 

We (me and the Oncologist) could clearly see that this was gnawing at her through her puffy eyes, tears and choked up voice so we discussed this at great length with the Oncologist. 

In the end, we were reminded that Sheila went through chemo the last time around with breast cancer 11 years ago and another tumor has now grown and spread to lymph nodes. Actually, this latest cancer grew and spread between scheduled mammograms. So, even with the chemo last time, the cancer grew again.

The statistics since Sheila's last experience with breast cancer currently show that chemo is virtually irrelevant the second time around for Sheila's type of breast cancer and particular risk factors so why should she suffer through the treatment, the side-effects during treatment and the side-effects which linger for more than a decade after treatment? The rate of re-occurrence is the same regardless of whether the patient endured chemo or skipped chemo. Surprisingly, the patients who opted for chemo and the patients who opted for no chemo fared the same (those who meet Sheila's criteria). Considering these circumstances, the doctors are recommending a milder and less aggressive treatment plan without chemotherapy because the statistics support that treatment.

A bit of a teary appointment with the Oncologist.

Sheila definitely prefers to avoid all the nasty side-effects of chemo so she quickly accepted that this is the right decision... no chemo this time around. Over the next few months, she may intermittently worry about whether this was the right decision but the specialists and statistics show it is the right decision for Sheila's particular risk factors and her specific type of cancer.

Shortly after arriving home from the hospital last night, the new counselor called Sheila to chat and schedule an appointment. Sheila will be jumping into therapy with her early next week.

Also next week, we have a gruelingly long day at the hospital with the radiation specialists. They will be creating a mold of Sheila's torso and head that she will wear at each of her radiation therapy treatments so she remains perfectly still during the radiation treatment. Radiation will be a daily thing for a solid seven weeks... eek, and ouch... mostly for the cancer growing in her breast but also for the cancer that found its way to Sheila's lymph nodes.

We do not have a firm start date for the radiation treatment yet but we expect to start either the first or second week of October. 

Our house is in those mountains along the horizon.

There was also a bit of bad news yesterday, although not completely unexpected, which shook Sheila up considerably. 

Following radiation therapy, Sheila will begin ten years of what is considered a cancer hormone therapy. 

Sheila's type of cancer feeds off of estrogen so, in order to minimize the chances of regrowth or new cancer growth, she needs to be active in this exceptionally long hormone therapy... well... sort of an anti-hormone therapy.

If I remember correctly, there are four different drugs available for Sheila's type of cancer. We'll start with one... if she can live with the side-effects, great. If she cannot live with these particular side-effects for this first drug, then she'll move on to the next drug option... and so on... for ten years... but, ten years is a looonnnngggg time for treatment! This news was a bit brutal to take without getting visibly shaken.

After Sheila's first bout with breast cancer, this therapy was only required for five years but Sheila found it to be much more debilitating, intrusive and life-altering than her chemotherapy. The idea of enduring ten years of this therapy this time around was a bit overwhelming for Sheila. On the positive side, at least we can work through four different options over the course of ten years, if necessary.

This morning we were back at the hospital for a bone density scan. There are many lingering side-effects (decades or life long) of cancer and cancer treatment (chemo, radiation, hormone, etc). One of these side-effects is a loss of bone density so we need to keep a close eye on this as well. On the positive side, this scan is a piece of cake... fast and easy. We were in and out of the hospital relatively quickly.

We've been so busy at the hospital over the past month that whenever we are leaving the hospital on a relatively easy day, we are always feeling as though we forgot to do something there. We always look at each other, then look around, before asking, "Did we forget something?" 

I know from my own chronic health issues that, before long, the hospital sort of feels like a second home and you seem to know everyone at the hospital far too well. Although, I must say that even though the hospital is very familiar to both of us now, neither of us will ever get used to that nasty "hospital smell". It still turns my stomach just thinking about that smell!

Heading in for the bone density scan.

Hopefully we'll both get a bit more sleep in the next few days now that these latest test results are available and most of the treatment decisions have been made. Sheila now has a couple more appointments crossed off her long list of medical appointments and I know that is a big relief for her. Her appointment with the Oncologist yesterday was a fairly significant one concerning some tough and emotional topics so I know that it is a tremendous relief to put that appointment behind us.

I really hope that Sheila will now get some much needed rest and recovery before we jump into the long, grueling radiation treatment...