Searching

It is after midnight and I am sitting in bed listening to the crickets – one of my favorite sounds of summer. It is peaceful and maybe oddly uplifting to me. It reminds me of my gratitude.

I have been disturbed, however, by my emotions this past week in particular. I last wrote about my PET CT scan and my anxiety about it, well I got my results last Wednesday and the results were good news – no activity in the lymph nodes! My doctor did, however, say they saw something in my salivary glands – didn't know what it was and he said he wasn't worried about it. Well, how about that I'M worried about it?! There was no use of the word "remission," perhaps because I am still a big ol' question mark bandied about between oncology and rheumatology. But here's what bothers me, along with the good news tempered with this salivary gland thing and the continued "unknownness" – the fact that I didn't feel as overjoyed as I should have for this news. What's wrong with me? I'm relieved, happy, and grateful but I didn't feel that peace or elation that I expected. In January when I had a PET scan after three chemos in the midst of treatment, my oncologist at that time barely took two steps in her office before she joyfully delivered the good news – "no lymph nodes" (that's how they tell you the scan showed no activity – almost sounds like your lymph nodes have disappeared, huh?). I was so incredibly happy, I began crying – as did she and my mother. I wanted to feel that way again this time but I didn't. Granted my Boston oncologist's delivery style was different, though he was behaving in a positive way ("live your life"), but I have been grappling with my mixed emotions and, frankly, been beating myself up over it – like I need any more beating than I've already had! But there is an element of guilt where I think how dare I feel down when I got this far, when I'm lucky to be alive; when I was so, so sick less than a year ago. It feels like such a disservice to my family who stood bravely by my side and saw me through my worst days and moments, who had to endure their own personal pain through this. I feel like it's even a disservice to God for seeing me through and here I am shedding tears and having moments of depression. I think I've confused everybody... well, not God of course! But certainly myself and then I feel guilty for that and there's this silly circle of guilt. Not to mention that I'm usually the upbeat, happy, optimistic Debbie that everyone knows; or the fact that people have been telling me how strong and brave I am – I don't want anyone to think otherwise – I am still that person but you can be optimistic and strong and still have fear or worry or feel depressed. It IS ok.

Fortunately, I have some incredible close friends and family who, when I expressed these feelings to them, said some things that made me feel better – that “it’s okay to not feel joy when there are so many unanswered questions”….. “…don’t beat yourself up over how you feel – you feel how you feel and there’s no right or wrong to that!”…”….[the news] kinda robbed you a bit of the comfort you should have had. But it is a milestone and you’ve come all this way!”….”This is really your first big test after your chemo. It hasn’t been that long. You can’t be so hard on yourself. You aren’t doing or feeling anything out of the ordinary. Nothing is right or wrong how you feel. You are just being real!” All those of words from four different wonderful people helped me tremendously – so much so that I have been going back to reread those texts and had to write them here again as a reminder.

Also in an effort to help myself figure out why I have been feeling this way and crying more now than I did even during chemo, I did a little web surfing tonight and learned I'm not so abnormal after all. It's normal for people who have gone through cancer and cancer treatment to feel this way – sometimes it's depression or anxiety, even post-traumatic stress disorder in some, which makes sense because it IS traumatic. And it's common for loved ones of those with cancer to go through a depression or anxiety as well.

I think what’s common or what’s putting up that wall is that uncertainty, that worry that the cancer or sickness is going to return. Maybe one might think, "be glad your scan was ok and" as my doctor said, "live your life." Hey, I am – believe me! I know after all the rallying around and the support, prayers, cards, gifts, etc., when you are at your worst that eventually it tapers down when people learn treatment is done and you are getting physically better. Everyone has their own problems and worries and need to attend to their lives and I know my family and friends WANT to see the Debbie they knew before this – "back-to-normal Debbie" – and believe me, I want that, too, but I am learning it just doesn't happen that quickly. They say to those of us struggling with that – missing our normal and wanting to return to it – that you often never do and that you need to accept, embrace even, a "new normal." I get that, sure, I'm just not there yet.

I can say that though I have been writing here about the lack of elation, I have been fortunate enough to have many other moments of joy – being around my family, time with my nephew and nieces, my birthday this year and being able to smile and laugh with my family and enjoy the day – even having my cousin pay me a surprise visit, sitting outside and just feeling the sun and smelling the sweet aroma of summer, and then there’s always the hula-hooping – being able to hoop even just a little bit brought me joy! Oh and back to being able to open a window and hear the crickets. The little things in life. The daily sweet and sometimes simple things we take for granted but that you come to truly appreciate when you are lying in a hospital bed for a month, when you can’t speak right or eat or drink properly because your mouth is full of painful sores from chemo, when feeling hunger pains becomes something to celebrate, and being outside from the house to the car for medical appointments becomes the treat of the day because you’re outside for just a moment and can take a breath of fresh air. I don’t want to ever forget some of those hardest times because it brings me back to reminding me of my blessings and my gratitude and snaps me back to realizing that joy is there even in the most confusing and challenging of times. Yes, it’s there….within my heart. 

One of my little joys - hooping...(photo taken in the reflection of my garage window).