Thursday, July 26, 2012

Inch by Inch

So...I am coming up on my birthday. My 39th birthday to be exact. I used to be a little bit sad about approaching 40, but that's kind of changed. You see...over the past 10 months,  there have been times when I wasn't sure I would make it to my 39th birthday. Even now, as I write this, I think my new-found understanding of the fragility of life keeps me from even being sure that I will make it through the next 5 days. Not that I am anticipating anything happening...but that's the thing about life and can't really anticipate what only God knows.

Anyway...I think if you asked me a year ago if I was looking forward to being 39, I would have groaned dramatically and made some comment about getting old. But, today if you asked me the same question, I'd have to say "hell yeah" because I want more than anything in the world to continue getting older, to be 40 and 45 and 50, etc. A year ago, I would have said that I didn't want to celebrate birthdays anymore...they are just another day...but know what...I want to not only celebrate my birthdays as I age, I want to celebrate everyday. Each day that I wake up still breathing is a gift. Cancer taught me that much. I am sure it has plenty more to teach me, since right doesn't seem to want to go anywhere.

That being said...many of you already know that I had my scan this past Monday to see if the chemotherapy drugs from the clinical trial were working. I felt confident that I could handle any result. Alas, the results were not good. The large tumor on my liver has grown another 1.2 cm. We are now up to 9.2 cm (don't try to look back and do the math because it doesn't make sense to me either. I guess the size depends on who is measuring it). In addition to that, there were a few spots that were being "watched" (unbeknownst to me) that have become measureable in size. Much of my pelvic masses have stayed the same size, with some of them growing a little. I am pretty sure he didn't mention anything shrinking. I am also pretty sure he didn't mention anything spreading. 

I wasn't really surprised. I had felt in my heart and body that this drug probably wasn't doing what I needed it to do, but I was still disappointed and sad. Sometimes, I feel scared. Monday was one of those times. 

However, my doctor reminded me that there are still other options and that I am still in relatively good health. He said..."I don't want you to think that I am sending you home saying 'there is nothing else we can do.'" Together, we put together a plan. My husband and I were to research a few things and the doctor would be researching some others. There's movement for now on what to do next. Which is a can't imagine how many people responded to my news with a "what now?" Yeah...what now?

Now we gather our resources and go back to the drawing board. Another battle lost, but the war is nowhere near over. I may be getting used to this process. I am recovering more quickly emotionally. Though I say that now and who knows what the next hour will bring. It's a rollercoaster for sure.

Anyway...strangely enough...I got an email with the following quote just a few minutes ago and it reminded of how I need to take life right now...inch by the present moment. Nothing big is accomplished in one leap. It takes time. I may not have as much time as I once thought. But, I have this moment to fill however I want. Baby steps. Inch by inch.

Watch your way then, as a cautious traveler; and don't be gazing at that mountain or river in the distance, and saying, "How shall I ever get over them?"

Just keep to the present little inch that is before you.

The mountain and the river can only be passed in the same way; and, when you come to them, you will come to the light and strength that belong to them.

Mary Ann Kelty, 1789-1873 (Adapted)English Author and Poet

Take care, my friends, inch by inch.

Love, Vashni

Friday, July 20, 2012

...And I'm Just Not Sure How to Feel About It

Sooo...I have a CT scan on Monday morning. I can't decide if I feel anxious or not. I don't seem to be anxious, but is it because I am not anxious or is it because I am floating along on some sort of denial cloud right now? Ha ha. And, either it going to hit me like a whip in a couple of days when it's really happening? 

Part of me thinks...well, maybe I have finally really gotten this whole "worry is useless" thing down. And then, I pause for a moment, and proceed to laugh my arse off. Seriously, I try...but that's just never going to fully happen. It's too far ingrained in my bloodline and my psyche. Not worry. Hahahahahahahahahahahahahahahahaha. Hahahahahahahahahahahahaha.

Hahahahahahahahahahaha. Sigh. 

And then I think....well, maybe I am just used to and getting comfortable with the disappointment. many times now have I heard "It's not working. We need to try something else"? Maybe I am numb to those words. But, nah. Perhaps there is some small truth to that, but overall...that's just completely counter-intuitive to my hopeful nature. It can't be that. Can it?

Perhaps...I just have a good feeling about this trial. be completely honest...I don't. I don't know if that is because I have "felt good" about things in the past and been wrong or if I really just genuinely don't feel good about this one. I don't know. I want to. But, it's not there for me.

Maybe I am just too exhausted with this process to think so much about it at this point. Although, if that were true, would I be typing this post right now? LOL. 

Anyway...I have a CT scan on Monday morning. And I really don't know how to feel about it. Happy healing thoughts are always appreciated. If the scan shows that the tumors are smaller, stable, or have grown within less than 20% of the total size at my initial scan prior to cycle 1 (although this actually sounds like a lot of growth to me at this point), then we will continue chemotherapy next week. Otherwise, it will be time again to search for something else. I will, at that point, have about 2 weeks to clear my system of this drug before starting another trial. Or, I think, if I wanted to go back and try something with my regular oncologist (and battle things out with the insurance company for coverage), I could start that sooner.

That's all for now, folks. On the "cancer" front, that is. Happy Friday and weekend. Be safe. Stay away from the news. And have a good one!

Love, Vashni

Wednesday, July 11, 2012

Tick, tock, tick, tock....

It's been a little more than 3 weeks since I last blogged. Ack! I suppose I have had a little bit of a blogging dry spell. A mental vacation, if you will. On blog hiatus. Something like that. Anyway, thanks to the friends who have checked in on me and made sure I was still alive and kicking (I am) and for those who said they missed me (I miss you too)!

So, what's been happening? Eh. Not really anything to write home about, hence the dry spell, I guess. The two weeks following my first week of chemo were pretty much consumed with step-parenthood.  This is not to say that I was "parenting" 24/7, because I wasn't, but somehow these 2 weeks got away from me. And quickly. Having a kid in the house will do that. I know this because most of my friends are parents and they disappear from time to time and I totally get it. 

I was all gungho about "finding the balance" between being a good stepmom and taking care of myself. How did I do? Fail. do all you mothers and fathers do it!? Mind you, my stepdaughter is in camp during the day, so it wasn't like I was busy all day with her. I was still just with myself. Undoubtedly, there was more laundry, more cleaning, more groceries to buy, more food to cook. But, still...why couldn't I find time to rest and heal? In the evenings, we did family stuff. I wasn't forced to. I wanted to. But, at the end of two weeks, I was pretty tired and I relented to do better the rest of the summer. She is back with her mom right now (for a total of 2 weeks) and will be with us for 6 weeks straight once she returns. I must learn to allow myself to rest and not feel guilty while she is here. I MUST! I think I worry that if I go rest, it will seem like I am isolating myself and that she won't feel loved by me. Sigh. It's hard being so sensitive. LOL.

Last week was the first week of cycle 2, which means that I was at NIH everyday for treatment. It was a rough week. I started off with some pain on Monday and due to the holiday week and the area-wide power  outages, NIH was operating on limited staff. My own protocol team wasn't there on Monday to write up my orders for the week of chemo! So, it was a slow and painful start. 

When I finally DID start the chemo on Monday, I ended up having an allergic reaction to it. What?! I know. I said the same thing. Apparently, my body is building up antibodies to the drugs in the IV. After about 5 minutes of infusing, I started to feel tightness in my chest, have difficulty breathing, and my face and lips felt tingly and like they were swelling. I wasn't sure if it was all in my head, but thankfully I decided to hit that call button on the remote that I usually only use for the TV volume. Ha. I slowly said "My face feels funny" and as I was saying it, I saw a nurse rushing toward me. Apparently, my face also LOOKED funny. She hurriedly stopped the infusion and hooked me up to some monitors as my own nurse came running to assist. All was fine within a few minutes, but they now have to give me some stronger benadryl, some added pre-meds and run my drip slower. 

So far...its been fine since the "incident" on Monday, but the extra pre-meds make for a very sleepy Vashni. Monday through Friday, my schedule looked something like this: Get up and go to NIH. Get treatment. Go home. Go to bed. Repeat. I was so wiped out that the week was a complete and total loss. I even slept DURING treatment. So, yeah...not much blogging can be done while I am unconscious and drooling.

By Friday, I was feeling really depressed. If this medicine is working, I will be thrilled. But, at the same time, being out of commission for one week (plus some) out of every three weeks kinda sorta sucks. Saturday through Monday, I was still feeling exhausted....kind of like....lethargic. And not just my body, which I would hoist around from bed to couch to hammock to chair, just being miserable, but my brain also felt lethargic. Like...deep thought took way too much energy. I found myself, often, sitting in our living room staring into space, listening to the clocks (we have many) tick tock the time away. Is this what it is like to be in the brain of a man when he is at rest? Interesting. Tick, tock, tick, tock, tick, tock, tick, tock....hear that? That's my life....passing by. 

Anyway, each day since Monday has brought a little more energy into my body and brain. I will probably be fully functional just in time to start this process over again. It's like Groundhog Day, but way less amusing. 

That being said...the deeper parts of my brain are slowly starting to awaken again, so hopefully I can produce some meaningful and humourous blogs in the very near future.  Until then, thanks for being patient with my man-brain! Love you all!!!