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.

T Cells On the Offense

Among the many things I am grateful for this Thanksgiving weekend is something I no longer have: my rash. I was able to enjoy the three Thanksgiving celebrations with three familial sets and cheer on Craig in a turkey day road race sans the itchy red spots that had been haunting me.

As of Wednesday, the red brail faded into a vague purpleness, no longer raised and angry. With this good report, I got the go-ahead to start back on the Revlimid treatment pills back at the original 10mg. This is half the dosage I was on when the rash set in.

I was eager to get back on the treatment, worried that I would lose any momentum I had gained against the disease. However, getting back on hasn’t been easy. It seems my body easily forgot the semblance of balance it had found once it got used to the drug. It’s again been a shock to the system.

Tumor flare seems to be again well, flaring. Ouch. My mid-back hurts tremendously. It hurts for a couple of days before I went back on the treatment pill and now that I’m taking it again, the pain has increased. I take the medication before bed so I don’t have to deal with its ramifications during the day. For these first few days back on the Revlimid wagon, this has meant waking up throughout the night with pretty tremendous pain in my hips and back, the areas where lymphoma lies/laid.

I’m not surprised, and I guess this is good. Pain means that the Revlimid is jacking up my immune system and flooding those diseased areas with natural killer cells. The process causes a lot of internal inflammation in my bones where there’s not a lot of room for extra cells. It feels at times as if my hipbones will just give out. I’ll check in with my Columbia team on Monday, but I’m pretty confident that they’ll say: yup, this is likely tumor flare; it’s the drug doing its job.

I ride it out with Aleve, breathing, microwaveable heating pad and stretching. The nighttime pain keeps sleep elusive and the first hours of the morning extra creaky. It’s manageable most of the time through the day, though I’m certainly hoping things calm down a little. In this case, pain is proof positive. With that in mind, I can endure it.

Getting to play with my niece and nephew and now frolicking in full-swing Christmas season and everything that brings is a beautiful distraction. Best painkillers out there. 

This is an incredible microscopic look at what we hope is happening in my body. The Revlimid is working to ramp up those receptors on the natural killer cells (the red dots) so that they will latch onto the cancer cells and eat them for dinner just like this video demonstrates: 

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.

Poetic Therapy

This isn't the first time I've posted this poem by the poet we met in Old San Juan, Puerto Rico, but its sentiment is again very appropriate. It's what I strive for – to let go of the expectations and let things go unanswered.

When I was very sick in the hospital recovering from my transplant, I'd have whoever was with me the latest read me a poem to put me to sleep. I had several books of poetry in the room with me and I'd let them choose which to read from. It was soothing and calming and digestible at a time when weighty prose was too much. Poetry helped me to envision beautiful places or just get transported by the words and rhythm. With my mind quite overwhelmed right now, little by little sounds just about right.

Little by Little

I'm letting go little by little, but I am
It sometimes hurts. I sometimes cry.
I sometimes erase it all
And sometimes I try and I can't.
But I'm letting go. I am.
That's just the way I am.
I can't help it anymore.

My mind races.
Unlike the hare
Who had patience to compete.
I'm racing to defeat myself.
It's torture in a shell
My heart has been to hell
I'm letting go.
Little by little, but I am.
I learned that now I can.

Sometimes it's good.
Sometimes it's ssweet.
There are times too
That I never meet a standard.
Where questions flow unanswered
And it's okay in itself.
I'm taking down the shelf of expectations
Crowded by imitations
I learned that now I can.

I'm letting to. Little by little.
But I am.

-Lady Lee Andrews

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. 

Painful Signals

“You are extremely anemic,” Dr. Moskowitz said as she pulled up my bloodwork results on her computer. She looked at me with great concern and it seemed that all the symptoms I had been describing since the beginning of our Dec. 13 appointment came together and made sense. 

My pain had gotten to be extreme, waking me up writhing in the morning, preventing me from sleeping, or worse, the gravity of it waking me up in the middle of the night. It would throb and seethe mostly in my right hip – a pain that emanated from deep in my bones yet would spasm through my pelvis and upper leg. It brought me to tears and it forced me to take some of the pain medication from the bottle I had from my transplant procedure. I called my parents the night before this regular check-up at Sloan-Kettering. I knew that I wouldn’t be able to handle the train and I needed a ride in. My parents were happy to oblige – my father’s first time driving into Manhattan – and I was able to stretch across the back seat with a blanket and pillow alleviating the pressure on my painful sitting bones.

Not As Easy As It Looks

I haven't been able to write. I still don't know if I am able to write, but I'm going to give it a try. I'm not certain why it's been so difficult. I think it's a combination of not wanting to dole out difficult news to those that read this and of the memories that flood in every time I open this blog page. But this is my outlet and this is my honesty. I haven't been feeling "inspirational" or "heroic" or "positive." For really the first time, everything has caught up with me.

I have been living with focused blinders on and now am suddenly feeling all the punches from nearly three years all at once. I've gone at this with sheer determination and I know that what I am writing here will come as a surprise to many, but I am asking for your understanding and support. I know that this is not what always appears on the outside. But I believe that it is important for everyone dealing with their own medical issues and for those watching a loved one go through it to understand that we can't be smiling all the time and that it gets very tiring to hold it all together. I think that that's okay. But I don't think that it's easy to admit.

Life has been very difficult over the past month. Things have been more difficult for me to handle than they have ever been. I've been dealing with a lot of anger, frustration, and feelings of defeat and helplessness. I'm uncertain and uncomfortable. I'm unfocused and unstable. I get very sad and very mad and very frustrated. I'm finding it much harder to pull out of the low places. I'm finding many less places of elation. I resent other people and get wildly jealous of their happiness and wish desperately to find my own again. I feel like I cry all the time, but at the wrong times.

I hate being on treatment again. I hate that I have no idea if it's working. I hate the feelings that the Hodgkin's disease is flaring up. I hate the fear of GvHD. The Revlimid has been primarily well tolerated except for tremendous fatigue; I am so tired all of the time but so anxiety ridden that I can't sleep in the way I need to be sleeping. My eyelashes have thinned again, nearly all of them that I worked so hard to re-grow after transplant have been showing up on cotton balls and on my pillow. I again have the eyes of a cancer patient and it's incredibly unnerving.

Biopsy #4 and Revlimid Start

It's been a while and much has happened. I had the biopsy procedure of my right sacrum performed at Sloan-Kettering. The pathologists have read the sample and confirmed that yes, there are the telltale Hodgkin Lymphoma Reed Sternberg cells present. It's the same disease trying to flare again, now most certainly in my bones. This wasn't a surprise to anyone, but it does help the situation to know we have some hard pathology evidence of the disease we're trying to go after. 

The biopsy procedure was not fun, this is certain, but it’s over, and I was fine after just a couple of days of swelling and soreness in the area. There were many hours – way too many hours – spent waiting and fasting before the procedure. I had to fast from midnight the night before until after 4 p.m. when I came to from the twilight sedation. It was a long day in the city. The surgeon went in with a needle and bone hammer and extracted a piece of the bone and marrow where disease looked to be involved, pinpointing the area with live CT Scan technology. The surgical team gave me medication to relax me, but I was by no means asleep. I played Bob Marley through my headphones and welcomed the anesthesia nurse’s hand that rubbed my arm throughout the most painful moments.

Then came more days of waiting: for results and a plan. Then came more traveling to NYC to solidify that plan, including a solo trip by car and train – liberating! I’ve done an incredible amount of thinking and contemplating and talking out options with my family and medical team, but mostly with myself. I had to ask the really difficult questions to my doctors to be able to get things into perspective here. They’ve been realistic and gracious and I could not be more appreciative to have the individuals that I have in my corner.

It took me a few weeks to get to this point, but right now, that CT Lottery tagline: “You can’t win if you don’t play” keeps coming to mind. So does the Wayne Gretzky quote: “You miss 100% of the shots you don’t take.” There are still shots for me to take and I can still win, but I have to play in order to do so. Playing will not be easy and the idea of more treatment is deflating, but it beats the alternative. To be very blunt, if I don’t play, I will die. This lymphoma will begin to become very painful and it will kill me.

In black and white, the risky treatment might kill me; the cancer will kill me. I’ve decided to hedge my bets. Because there are areas of cancer on my vertebrate, it eliminates my hope to be able to ride this out for a while longer, to “wait and see”. If I want to maximize the effectiveness of my current options, I need to act now. There is still hope for this donor transplant process to work – we just have to poke it a little bit. 

I am reluctant to have more toxic, traditional chemotherapy and have exhausted most of those options anyway having been so heavily treated. I do not want to send my body into tremendous trauma again, and because of constant scientific developments I hopefully will not have to.

Gratefully, there is a promising option and I have decided to embrace it. I’ve started a targeted therapy drug, Revlimid (also known as Lenalidomide). It is an FDA approved drug used primarily against Multiple Myeloma. However, there have been recent and ongoing studies of its efficacy against refractory Hodgkin Lymphoma – even after donor transplant. It has shown some promise in these studies, and I’ve connected with a couple of other refractory HD patients who have had great disease reduction results with it. The best part is that because it is a targeted therapy, the side effects are said to be minimal. So far, this has been true. I’m a little more tired and more easily winded, but that seems to be all.

The drugs were delivered via FedEx to my door. It is an oral pill that I have been taking once a day and will continue to for the 21 day cycle, one week off, then a second cycle. After two cycles we will check a PET Scan to see the progress that the therapy is making against the disease. Because this pill is such a "light," targeted treatment I can be on it for a very long time if needed. It's not like toxic chemo that a body can't handle for prolonged periods.  

In some post-allogeneic transplant patients, Revlimid has actually pushed them into some mild Graft vs. Host Disease proving that the drug may actually have a stimulating affect on the immune system/donor lymphocytes. This possibility makes the therapy even more ideal because not only will it be going after the small amount of lymphoma I currently have, but it may also ramp up my newly donated disease fighting cells: a win-win.

The hope is that the Revlimid will reduce the disease tremendously and will allow me to go forward with the Donor Lymphocyte Infusion with a super blast of my sister’s disease fighting cells. That procedure of course comes with the risk of mild to severe Graft vs. Host Disease, but also the only promise for long-term remission. I’ll revisit that decision when we get to that point. Right now, we’re working on getting the lymphoma under control while keeping my quality of life as high as possible.

Life has been very emotional in many respects – tough moments but also beautiful moments. I am feeling mostly well and I can do most everything again. I’ve had nearly five months without chemotherapy treatment and much healing has happened during that time. The freedom and confidence that allowed has done wonders for my spirit. My limitations will increase some again once this new drug begins to affect my blood counts, but it shouldn’t be anything extreme. I’ll continue to see my lymphoma doctor at Sloan-Kettering once every other week and will have blood work drawn locally at Hartford Hospital’s nearby cancer center every week.

Yes, treatment continues, but my life does too. Living is my focus now more than ever. No more being a full-time, incapacitated patient. I am taking full advantage of my renewed strength and mental capacity. I am still going back to work full-time from home as planned. I start tomorrow and I can’t wait to delve into the projects at hand. I'm working out with the LIVESTRONG at the YMCA program. I am also flying to visit my sister in Las Vegas for a few days and very much look forward to seeing the desert and mountain landscape out there: one night we’ll be camping in the Valley of Fire, another we’ll be taking in the Vegas strip. Maybe I’ll just put it all on red?