Phasing out the 'Roids

Today's Starbucks nest. 

Thursday also starts with a “T” meaning that it qualifies as a Tuesday blog post, right? Really, I am trying to get back on the Tuesday/Friday posting wagon because it’s good for me and – I imagine in my head – good for readers to be able to anticipate when posts will be up. [Is it? I’d love to hear from you in the comments.] Today’s blog will serve as a Tuesday/Friday hybrid post: Tuefday.

Ultimately, I didn’t get to writing this week because I am so damn tired and most of my energy has been devoted to laying plans for next treatment steps – with a haircut, pedicure, Hartford dinner date with Craig, and a lady’s movie and lunch date thrown in there (it’s not all medical mayhem). I am tapering off of the 10mg of Prednisone that I’ve been on for months and which has been my little comfort dose. I am now taking it every other day. Today is a no steroid day. I’m trying to replace it with green juices and smoothies and shots of apple cider vinegar and it’s helping a little with the transition. I’m supposed to be doing all of this every day anyway as prescribed by my naturopath, but I’ve fallen off of that wagon lately, too. I’m transitioning better than I have in the past, but it’s still not easy. However, if I can do this, then it opens up more clinical trials, so I will make it happen.

I’m tired for a variety of reasons:

I’m still pushing past that lingering pneumonia. It’s much less, but I’m still coughing and my nose has been running incessantly from a lingering cold. I carry wadded up tissues in my fist like my Nonna used to do. She’d tuck them in her shirtsleeve so they’d always be at hand. It’s helpful because I never know when the faucet will open. 

Nighttime sleep has been a joke – still – even after being home in my own bed. I have bad nightmares and I talk in my sleep a lot so I’ll wake up sitting up in some weird position and will have to basically slap myself to make me realize that the dreams aren’t real. I’ve also been sweating again: both as an effect of the floundering steroid hormone levels and probably the disease itself. Last night I woke up in the middle of a sweat and actually witnessed the sweat beads popping out of my skin, all over, until my legs were slick with salty water and my tank top was misshapen and heavy, a huge ring of visible wetness on it from my neck to my bellybutton. As much as Craig urged me to, I was just too tired to get out of bed, dry off and change, so I fell back to sleep chilled and smelly.

Sweats don't just happen at night either. In fact, I just had one right here. That fireplace next to me suddenly feels like the fires of hell. All of the sudden I'll break into crazy hot flashes and have to strip down to as little clothes as possible. My forehead will bead up and it'll suddenly become hard to breathe. This happens from the hormone up and downs, from the disease, and probably from early menopause, though I'm in full denial surrounding dealing with that. Oh, and P.S. My left boob is still completely numb and aches most all the time. 

The disease is on the rise and my body is in high alert mode. It’s a different tired than when I’m on chemotherapy, which is more drug induced. This is more of a natural tired feeling. It’s actually preferable because when I do fall asleep – which happens best during mid-day naps – I fall asleep quickly and into a very deep sleep. This kind of tired is felt deep in my bones and in every organ. I get to a point each day when that’s. just. all. i’ve. got. No mas. It’s like watching a computer shut down. It goes through each of the open programs and closes them in succession and the screen slowly fades. My body will get tired, then my eyes will get heavy, then my words start to slur. However, with me, no one asks if “I’m sure I’d like to shut down now”. Something greater than me is in control of the power button.

Muscle and bone aches are another prominent feature of the steroid wean. My quads feel like jello and my back muscles are sucked onto the bones as tight as Saran wrap. Without the Prednisone, the awful pain is also revisiting me in my left shoulder blade. The same pain that popped up while I was in San Francisco. The steroid must have been keeping the inflammation surrounding it at bay. It’s one little, very pinpointed spot that has the power to send these electrical flares of pain through my entire body. When it’s really throbbing, which mostly happens in the middle of the night and wakes me up, I feel like I took a bullet there and the pain is reverberating from the impact. I’ve tried Icy Hot on it, I’ve tried massaging it, I’ve tried ice packs, and mostly, like they teach in yoga, I just breathe into that sucker with the utmost focus because it’s all I can do. Oh, and I’m still on the pain patch. It doesn’t touch that kind of pain though. In fact, two Aleve are what seem to be the best for it. They at least take the edge off.

Focus has also faded. Hence, lack of blog posts. It is so much work for me to get out of the house. I am at Starbucks now, but I didn’t leave the house until noon. It’s hard for me to get out of bed, if not for Sammy Dog clicking her little feet by my bedside doing the gotta-pee dance. It’s then hard for me to get out of the shower because it’s so warm and the idea of putting clothes on and making myself presentable is so daunting. Then, I make an elaborate production of morning breakfast and e-mail, Facebook checking. Gotta make an oatmeal with nuts and seeds and fruits, green tea and a lemon water and a green smoothie and get fully caught up on correspondence and take my pills before I go anywhere. Mostly, it’s because I’m too tired to get up off the chair.  Then – shit! – it’s 11:30 a.m.

In order for me to leave the house for some reason I have to prepare like it’s the Apocalypse. It takes me a while to pack everything that I might want to work on, enough things to drink, a snack pack (highly important!), Purell, tissues, as-needed meds, notebooks, red pens, charging cords, sneakers – in case I’ll go for a walk along the trail behind Starbucks, and yoga mat – in case I’ll do a drop-in gentle class at the studio one plaza over. I even do this in my own home. I create a little nest of things I might need all around me. It’s weird and I think a habit I carried over from transplant days when I’d need things at the ready and wouldn’t have the strength to necessarily get to them.

Then, I finally get to Starbucks and they rearranged all the tables in a weird configuration that almost sent me into a panic attack. My usual spot has been replaced with three resting chairs and a little side table. The other tables are right on top of each other and broken into twosomes. What the freak? It’s like my brain is so used to handling the super, super big things in life all the time with relative ease that the easy things can really throw me for a loop. 

Tell me there’s new spots of cancer filling up my lymph nodes and I’ll digest the news no problem. Let's move forward and find a way to fix it. Hide my eos lip gloss egg on me and I can literally break into a panic. I like to blame these tendencies on the steroid taper and insomnia, which I like to blame everything on. A positive is that I’ve been much more receptive to just enjoying things, relaxing, going for impromptu outings and am looking forward to a fun weekend with friends and a dinner party planned. I’m too tired to feel guilty for not being productive and have had a big mind shift lately in realizing that just “chillin” – as my younger brother and sister always call it – is productive too, just in another way. My head and body certainly do need to “chill.”

Family, friends, doctors, and cancer confidants were in agreement with my gut on the biopsy question. I’m going in next Thursday to see the Hartford Hospital surgeon who performed my first two lymph node biopsies from my underarm. He’s very kind and very skilled. I am so fortunate that my Columbia team had no problem with me getting the procedure done locally, completely understanding the extra stresses that eliminates. I’ll be comfortable in familiar territory and close to home. They’ll be able to analyze the tissue directly as well, so it doesn’t really matter who it is cutting it out.

Thursday will be an assessment of the nodes he could go after and potentially could be the biopsy itself if he determines it’s something he could do right there in his office. Otherwise, we’ll set up another appointment in an outpatient facility. I’m hoping for the former, but am up for whatever it takes. What’s another scar and surgical recovery at this point? Treatment is halted until we get these results.  


[Sidebar]: I reworked, sliced and diced my recent blog post "The Semantics of Cancer" to meet submission requirements, and it was published on The Huffington Post. Check it out here. If you like it, please give it a Facebook thumbs up, share, or tweet it out to your personal social media worlds. You can also "like" me as a HuffPo contributor and get updates anytime I'm featured there. Thanks for following! 

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.

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.



My husband's mother, Linda, passed away on November 29. Craig and his brother, Eric, were with her by her side. Letting go and watching her slip away over the course of a couple of weeks was heartbreaking, as was deeply feeling how it affected Craig, Eric, Rachel, me, and the rest of her close family. I hate that I am not at my own full capacity to be able to pick all the rest of us up. I hated that I felt I was not the wife I would have been three years ago. I spoke at her service and spoke much with her in her final days and am inspired with how at peace she seemed to have been with her life and the choices that she made in it.

It is also the first Christmas without my grandmother. There is certainly a void there and because I was so sick myself when she died, I have had no closure and no comprehension that she is gone except in the eyes of my mother and uncles. I'm almost emotionally numb to it.

My dear friend also just lost her mother to another cancer battle and I feel like more and more people are getting diagnosed. I'm also deeply affected by the loss of a fellow warrior, a woman who came to visit me when I was in transplant quarantine and who helped to decorate my room with photographs and art. She never made it through transplant and is now gone and the sadness of that is immense. It's terrible and awful and I wish that there was something that I could do to make it all go away.

I had been working out and getting back into yoga, but I've been so tired and so achey that I haven't been able to over the past two weeks. Eating is a continued struggle. I'm afraid that everything I eat will give me more cancer. I'm rarely hungry and my meals have been scattered and unbalanced. My mouth is always dry and my tongue aches and tingles all the time making it difficult to eat and sometimes even to drink.

The MFA in writing graduate program has again had to be deferred, if not completely unattainable now. My life is just too variable. It's too much money and it's too much of a commitment at this point and I don't know that it makes sense to make that investment. I also never did get out to Nevada to see my sister, the mountains, desert, and Vegas strip. The trip had to be canceled so that I could say goodbye to my mother-in-law at her memorial service.

I did move forward with my return to work full time, though primarily from home and with different job responsibilities. It's taking adjustment and a reassessment of myself and my capabilities. It's been difficult to have the faith in myself that all of my team members have in me. I'm doing my best to push through this transition period as I get past the uncomfortableness and into the realization that I'll never be the same as I was before all of this. Everything has been compromised.

I no longer have the capacity nor the energy to keep up a front or to brush things off. I am irritable and irrational most all of the time. No one can say the right thing to me and I'm building my own walls and breaking them down over and over again. This has manifested itself in my relationships with those closest to me: my husband and my parents and most troublingly, myself. No one beyond that would probably even know how much I am struggling – or maybe they do and I just don't know it. I'm only just starting to share these feelings.

My donor transplant was wildly traumatic. I've written about this before, but again, I am only seeing now how painful and scary it was because I didn't let myself get taken down by it at that time. I was in survival mode and it was exactly what I needed at that time and how I got out to the other side. Now that I am here, I have no idea what to do with myself.

I'm sorry to be so brutally honest for those who have yet to go through what I have, but transplant was an inhuman experience. I was literally vomiting on myself, shitting and pissing my pants multiple times a day. I'd get up, throw out my underwear, change it, and have no more energy left to do anything else. I spent my 29th birthday with a mouth full of blood from the severe sores in my cheeks and on my lips. But somehow what I remember fondly is smiling through it, with red stained teeth, at my dear friends who came to celebrate with me. I spent nights so weak that I had to use a commode next to my bed and sometimes I couldn't even make it to that. I woke myself up talking to clusters of balloons and would be so tired that I couldn't hold onto a cup of soup without falling asleep, losing my grip, and spilling it all over myself, too tired to even clean it up.

I came so close to death and to have risen from that – after constant treatment for two years before that – only to come back to find out that the f*&C^ing lymphoma is still growing is enough to knock me to the floor in sheer defeat. Being back in doctor's offices so much recently and having to recount with some semblance of cheeriness to my oncology teams of past that: "Yes, I had the transplant, but the journey continues ... ." or some bs line, is awful. I hate it. I wanted this to be over. I wanted to tie it in a bow and put it all away.

I'm not giving up. I just don't know what I am supposed to be doing. I don't know if I'm going to get better. I don't know how much time I have. These are tremendous unanswerable questions that I suppose we all try to answer. I just want to stop thinking about them all. the. time. I have lost a lot of my self confidence and my emotional stability has taken a big hit. I wish that it was more acceptable to be sad and scared and that there wasn't this tremendous pressure to keep myself so positive for everyone else. What I ask is for people to be real with me. Tell me it's difficult for you too. Tell me that this is normal, that it doesn't mean that I'm weak. Maybe then, I can be realistic with myself.

I have one cycle (21 days) of the Revlimid 5mg under my belt. As I mentioned, the fatigue is intense. However, my blood counts do not seem to have been affected at all. They are actually still soaring since my sister's donor cells gave me such an incredibly active new immune system. All of my counts are in normal range. My platelets are 280,000 – at stark contrast from this time last year when I had to do jumping jacks to get them up to 75,000 in order to receive treatment or the numbers as low as 16,000 this summer.

My liver function numbers are up: this could mean that maybe some Graft vs. Host/Graft vs. Lymphoma effect has been stimulated by the Revlimid. This is what we have been hoping for, sort of. My odd tongue feelings could be a part of that also. And, I've been having strange rashes, hives and welts that wax and wane out of nowhere. None of my doctors know exactly what all of this means but they are watching me very closely. There is so little data and so little precedent that it's all kind of a guess. I continue to see my transplant and lymphoma docs at Sloan every other week. I head back to NYC on Tuesday and we'll talk about starting up the second cycle of Revlimid. After that, a PET Scan to check progress.

I also am on the tail end of a rough cold virus which had me in hacking coughing fits for several days and blocked up my left ear completely. I just finished a course of antibiotics and feel improved but not fully recovered. I am so deeply hoping that it's not another "upper respiratory infection" that turns out to be the lymphoma on the rise – again.

I've also had some pretty incredible back, hip, and sacrum pain and aches. These aches are deep in my bones. I couldn't move without being brought to tears. It was so bad last night that I had to take pain medication, something that I have not done since I was an inpatient during transplant. Dr. Moskowitz ordered me an MRI of my entire spine last week and it didn't show that any tumor was pressing on nerves, which was assuring. It didn't reveal any vertebrae involvement that we didn't already know about. I am aware that much of these back issues may be related to tension. I hope?

I don't mean it to seem that things are awful all of the time. Christmas is my favorite time of year. We have a beautiful tree and have had many enjoyable moments, and I am doing my best to focus on those. I am so appreciative of my beautiful family and friends. My sister comes home for the holidays next week and Craig and I host our annual holiday bash on Saturday, which will bring so many of our favorite people into our home. I feel so much love, especially at this time of year. Maybe that's why this year, at this time, it's been so very hard for me because I want there to be many more to come. I miss my health terribly and it is the only gift I want this year.