So Many Tigers

I originally learned of this Zen story from a friend who shared it in her blog. I now think about it all the time. Nothing speaks truer to how I am feeling right now, so I will let the tale give a little insight. A few unexpected new tigers have emerged in my life – tigers that I once thought were strawberries I could grasp onto for hope and support. Each new tiger brings a pack as everything in my life and my treatment plan is so interdependent. I see a lot of yellow eyes and baring teeth focused on me right now while I dangle here on a vine awaiting answers. 

Tomorrow, I will be sucking strawberries when I finish my PET Scan and await my meeting with my doctor, ignoring the ridiculous amount of tigers and gnawing mice around me at the moment. Because what the hell else can I do?

“There is a story of a woman running away from tigers. She runs and runs and the tigers are getting closer and closer. When she comes to the edge of a cliff, she sees some vines there, so she climbs down and holds on to the vines. Looking down, she sees that there are tigers below her as well. She then notices that a mouse is gnawing away at the vine to which she is clinging. She also sees a beautiful little bunch of strawberries close to her, growing out of a clump of grass. She looks up and she looks down. She looks at the mouse. Then she just takes a strawberry, puts it in her mouth, and enjoys it thoroughly. Tigers above, tigers below. This is actually the predicament that we are always in, in terms of our birth and death. Each moment is just what it is. It might be the only moment of our life; it might be the only strawberry we’ll ever eat. We could get depressed about it, or we could finally appreciate it and delight in the preciousness of every single moment of our life.” ― Pema Chödrön

(c) takumy.deviantart.com

Exsnausted

Yawn. 

I am so tired. I'm sleeping 11 hours a night and still feel like I need a nap. Any little bit of exertion is enough to totally exhaust me and usually make me nauseous. I went to the gym and did five minutes on the elliptical. I thought I was going to have a simultaneous heart attack and vomit session. I played it cool, slinking off the machine and pretending like I was just doing short intervals and heading to the activity room, but instead ducked out down the back stairs.

Come to find out after bloodwork yesterday, I'm pretty anemic. A normal woman's hematocrit is supposed to be in the 37 to 51 percent range. I am at 29%. Not enough for a red blood cell transfusion, but enough to make me feel lousy. This means that oxygen isn't being efficiently carried around my body, hence the heavy eyelids and tired heart.

Tonight, we're going out with friends for delicioso 100% verified humane burgers. My hope is to get an iron kick to get me through the weekend. I have lots of writing to do and ornaments to put away.

Adding to the exhaustion is my PET Scan Wednesday. Thinking about that naturally makes me want to curl up in a ball anyway; it's just too much. To stop thinking about it, Sam Dog and I went for a walk at the park. The snow we had to trudge through made it doubly exhausting. I got home a sweaty mess, but it felt good to be a little active.

There is a lot of work going on in my body - hopefully it's on the winning side of the battle this time. Fatigue can last for years and years for cancer patients after they complete treatment. Chronic fatigue is common for post-allo patients. Fatigue is a side effect of the Revlimid. I understand why I'm tired.

Now it's time for a nap until Craig homes home. Sweet daydreams.

Pain, Puppy, and Phlegmy Tissues

Annual Christmas tree hunt on the farm. 

The pain got to be very severe, setting in seethingly Thanksgiving Day night and increasing through that weekend. I talked with my Columbia team, and it was decided to put me on a little pop dose of 50mg Prednisone for a couple of days. If the pain responded to the steroid, it was safe to assume that it was being caused by a tumor flare (a good sign). If the pain did not respond to the increased steroid, it may be lymphoma growth (a bad sign).

With one dose, the seething pain in my back and left side completely dissipated. I’ve  been off the 50mg for a week now and the pain has remained gone. It was likely my body once again getting used to the Revlimid ramping things up after being off of it for a week while my rash cleared.

The perfect tree.

I am pain-free and nearly ache-free as well. However, I have the glassy-eyed, manly voice, and piles of full tissues that are tell-tale signs of a full-blown winter cold. I blame my husband who was sick the week prior for passing it along to me – we share everything, cute, huh? It started with a raging sore throat Sunday morning, moved to head fullness and pressure to crazy sneeze attacks and constant nasal dripping and nose blowing. This morning a rumbly chest cough has joined the scene. ‘Tis the season.

Revlimid Rash Out

Baldwin Hills Scenic Overlook, Culver City

This week will be a one-blog-entry week due to a variety of reasons, not the least of which are jet lag and a raging red rash.

Steve’s memorial was beautiful, respectful, and inspiring. The positive, loving energy among the nearly 300 people that filled the LA studio where it took place was palpable. So many good people that he had attracted in his life and it’s no surprise that they were all there to pay tribute to such an incredible person that had impacted their lives as he has mine. The day was full of laughter, shared stories, touching moments and positivity among Steve’s favorite breakfast foods and drinks.

It was an honor to get to meet his family and to be able to tell them how much their son meant to me. In and of itself, it was worth the cross-country flight to be able to hug his wife, Jen, in person and to hear her speak so eloquently about the loss of her soul mate.

Sunset in Santa Monica

Though I wish he was still here, I left having learned more about his life and the way that he lived it giving me such a dose of positive inspiration and an acceptance of the natural rhythms of life and death that I needed at this time. The lessons that he taught through his witty and thoughtful ways did not die with him; they will always live on inside all of us who were fortunate enough to have had him in our lives.

Revlimid 3-Week Update

I have been taking the Revlimid immunotherapy treatment pills for just about three weeks. I think it’s safe to say that overall I have been feeling well and that the side effects are not much at all. The initial few days on the medication were tough, but that is always the case when shocking my body with a new set of chemicals. Everything seems to have synced up nicely. I no longer have the pain I was having in my bones when I first started (remember, this was a good thing indicating that my natural killer cells were zeroing in on the cancer cells and causing a flare, we hope). The fatigue is still pretty intense, but my head is clear and I’m able to live like a non-cancer patient, so for that I am grateful.

However, I can’t say that things have gone so smoothly during my continued adventures with Prednisone steroids. As I mentioned in my latest medical blog update, I had tapered down to zero after three months of use and my body went haywire with immense body aches, fatigue and high fevers. The Columbia team put me back on 10mg along with the start of the Revlimid 10mg to get things stabilized again.

After a week, I was having muscle vibrations and loss of strength in my quads – a common side effect of prolonged steroid use. To combat this, the team agreed to wean me off again as I was no longer having fevers. I started to taper off of the 10mg by 2.5mg at a time, dropping every five days. Apparently that wasn’t slow enough.

The Buts

I want to sleep in late, but Sammy dog has to go out and get fed and so do I, so I get up.

I want to be productive and wildly incredible every single day, but then I get tired and those plans unravel quickly.

I want to roll back over under the covers, but the morning sun shines brightly in my window coaxing me awake, and I can’t deny that.

I want to ignore the dishes and the laundry, but Craig and I have to eat and we have to wear clothes, so eventually I stop ignoring them, and I wash them.

I want to wallow in my pain, but then I remember that everything is still in tact – I have 10 fingers and 10 toes, I can walk, I can talk, and I’m still breathing, so I get up and utilize them.

I want to hop a flight to Paris – or maybe Fiji – and never look back, but I stay because I have a husband and a dog and a home that I love more than anything.

I get angry, but then I smell the crunched-leaf scent of fall, see the tree colors getting impossibly more vibrant, have a calming visit with a friend, hit my stride on a writing project, or see a video of my nephew singing in his underwear, and I can't be angry anymore. 

I want to pretend the toppling stack of medical and household bills isn’t there and just count it as part of our kitchen décor, but I stop pretending, and I go through them because homelessness and collection agencies don’t sound like any fun.

I sometimes complain that I got dealt a bad deck, but then I realize how damn good I’ve got it.

I’m unsure of my body’s capabilities, but then I test them and I’m always surprised that it can still take me where I want to go.

Sammy at our look-out spot above the valley.

I want to cry when I see a pregnant woman and know that’ll never be me, but usually I can hold my composure, at least until I get back in my car.

I get frustrated that I’m exhausted all the time again, but then I think of the alternative and frustration turns to gratitude.

I want to punch people in the face when I see a cigarette in their mouth, but I don’t because I have some sense of self-control still (though I’m not making any guarantees on that one).

I want it all to stop: the decisions, the confusion, the side effects, the questioning, the fear, but then I don’t want it to, because that would mean it’s over, and I don’t want it to be over.

I want to give up sometimes, but I love life too much, so I don’t.