A New Phase of Treatment

Heading back to Radiation Oncology... she looks as though
she is walking with some purpose, doesn't she?

I'm very far behind in blog entries as well as being very far behind in accomplishing things that need to be done around the house so it is time to try to put together a few blog entries in an attempt to doing some catching up. 

My health over the past couple of months has been rather poor, generally speaking. As a result, I feel as though nothing has been accomplished since before Sheila's cancer diagnosis... so, nothing really has been accomplished since around the time of our time at the lake house last summer... and that's a loonnnngggg time!

We had a short break in Sheila's treatment from Thanksgiving until the first week of January. This was a much needed break for both of us but not nearly long enough. Now we are back into hospital visits and medical appointments a couple of times each week. Unfortunately, I'm still exhausted! Sheila feels the same... tired, spent, worn out, and exhausted. I think we are both a bit frustrated too. 

The biggest problem is that any little thing we do totally wipes us out. Simply trying to keep up with the usual daily chores... cooking meals, laundry, and personal hygiene... are wiping us out even on a "good" day. I know that I feel like I can't get my head above water and I'm sinking. I have a feeling that Sheila feels very much the same. 

Back at Oncology/Hematology

About a month ago, we were back at the hospital for Sheila's followup appointments in Oncology and Radiation Oncology. More recently, Sheila has needed to start physical therapy for some relatively minor problems as a result of lymph involvement and her surgery to remove the cancer. Additionally, Sheila is still active with appointments in Oncology Acupuncture. I should point out that these acupuncture appointments have been surprisingly effective for her side-effects so we won't be stopping these anytime soon. 

First, in early January, Sheila had a followup appointment in Oncology. At this appointment, we discussed everything Sheila is experiencing and then Sheila was started on a new phase of treatment. This is the phase of treatment that Sheila has been dreading and there are very valid reasons for this dread.

This next phase of treatment will last ten years and the side-effects are rather brutal at times. Right now she is in the early phase of attempting to adapt to the first drug. Sleep is difficult to come by and the side-effects are a bit intense. The hope is that the side-effects will calm down a bit as her body adapts to the new drug. Oncology Acupuncture is addressing the side-effects as well in the hope of making the drug more tolerable.

Sheila needs to attempt this drug for at least a few months before abandoning all hope in getting relief from these side-effects. This reminds me that we need to discuss increasing her acupuncture appointments during this period as well. More acupuncture could possibly alleviate more of her side-effects. If this drug consistently proves to be unbearable, there are two other drugs we could try if the side-effects do not improve or if they are intolerable. Ten years is a long time to be on a drug that makes your life absolutely miserable!

Basically, what has been explained to us is that the cancer that was killing her has been removed and eradicated with a lot of widespread, aggressive radiation. That's the good news. She'll now need ten years of drug therapy to continue to suppress and block the known causes of her particular cancer and this groups of cancer drugs comes with some significant side-effects that affect daily life. 

In effect, she has traded a cancer death for a "new" normal which is far from "normal" life. This ten year drug therapy is a bit more aggressive than anything Sheila has experienced in even her first cancer so she'll need to adapt and get used to a new normal.

Clothes on, clothes off, clothes on, clothes off...

I guess we could honestly say that, on the positive side, we're already familiar with this "new normal" stuff. We've been living life somewhere between a normal life and death for the past ten years. We both have been living our lives somewhere in this rather dark abyss since Sheila's first cancer so it is already difficult to remember what everyone else considers normal. Personally, I am almost 20 years away from what I considered normal so I can't even remember what that was like even in my wildest dreams. 

That being said, even though we have a new normal and we are indeed adjusting, we are both very aware that Sheila is in a very trying and very frustrating period of adjustment with this new treatment plan. She is exhausted. She has constant headaches. Sleeping is difficult due to side-effects. Life is uncomfortable. Daily physical therapy has been added into the mix. And, to make matters worse, we're both trying to fight off this cold that everyone keeps passing around like a pointless, useless Christmas present nobody wants (how I despise Yankee swaps at Christmas).

We visited Sheila's Radiation Oncologist on another day in January. That went relatively well. There is some swelling from the radiation but it is not swelling that is in the "alarming" stage. This swelling is one of the reasons for Sheila's daily physical therapy now. 

She also has some pain due to cording which is a result of her surgery to remove lymph nodes. This is also being addressed and, hopefully, reversed through Sheila's daily physical therapy. 

So, after the Radiation Oncologist found that Sheila would benefit from some physical therapy, we had to schedule some appointments with a physical therapist and another new doctor. So far, that is going well. 

The down side is that we are both pretty sick and tired of hospitals at this point... we're sick of medical appointments... we're sick of adjusting to new treatments... we're sick of simply being so sick that we can't fluidly, easily and even painlessly do anything in our "life". We are tired of struggle and we are feeling as though our life is only hospitals, recovery, and exhaustion. 

They say things will get easier as we continue to adjust and find our new normal. It has been twenty years of new normals for me and I have to say that these adjustment periods are no easier today than they were twenty years ago.  The new normal becomes "acceptable" but the adjustment periods are a tough struggle... always...