Adjusting to Revlimid

After a whole week on 10 mgs of Revlimid starting on the 11th of this month, I was sure we would be coasting on this treatment.  On the 15th, my oncology team pushed the drug dosage up to 20 mgs, and things were good for a few days...I even had enough energy to do yoga, and two physical therapy sessions and to top it off a trip to the beach.

Unfortunately, on Saturday morning I woke up with shooting pain in my chest, extending into my neck, back and throughout my left arm.  To add to it, I was having a ridiculously hard time breathing in deep -- and when I did, there was a substantial amount of pain.  Being a cancer patient, we have a higher risk of throwing  a blood clot, and these symptoms did not feel good, at all.  So off I went to the ER, and was admitted to the hospital to run tests, a VQ and a CT, which luckily resulted in positive results, my lungs were clear and there were no clots to be seen. 

The ER and hospital visit took three times as long as it should of, and many arm sticks, due to not being able to access a vein, at the end of this visit my family, my partner and I all decided it is time for a new port.  The new ports you can access and use for CT's, mine at this point you cannot, and my veins in my arms have taken quite a beating over the last six years.  If you saw me today, and didn't know I was a cancer patient, I'd swear you'd think I was using heroin.  It's not a good look.  We are hoping to schedule surgery once this treatment becomes more stable. 

The muscular pain around my chest continued, the painful deep breathing continues, and after being released, new side effects/symptoms started to arise.  So far these have been side effects I've experienced on the 20 mgs of Revlimid:

My side effects of Revlimid:

• Mouth Sores
• GI issues
• Muscular cramps/spasms (primarily in feet, legs, hands)
• Fingers/Jaw locking
• Neuropathy 
• Due to jaw spasms and locking, slurring of some words
• Thinning of Hair
• Dry Mouth
• Back Pain
• Feet/Legs falling asleep within minutes
• Full body tension/pain/aching after sitting for more than an hour, and just to note I am usually incredibly pain tolerant but my muscles are so incredibly tender, that just a soft touch sends my body into a level of pain I haven't experienced since SGN

After two days in the hospital, and these symptoms on top of it, especially the joints locking and spasming/cramping which is a side effect of Revlimid that some patients do get, I have spent the last two days in bed battling my muscles.  And I am one tired pup, that still has one more week of these drugs to finish up before the end of my cycle.  Although mentally I know this will be the roughest part of the treatment, figuring out all the kinks and letting my body adjust, I am feeling a bit drained and exhausted.

Last night it was decided that I would decrease the drug back down to 10 mgs in hopes that some of these side effects lessen.  This morning I'm grateful that my hands are no longer cramping and locking anymore; however my neuropathy is consistent in my toes, and my calves continue to spasm and cramp anytime I'm not moving.

I am, with everything I have trying to be patient.  It has been a long time since I've been on a real drug, and a part of me almost forgot what it was like.  This will take some time and adjustments with medications. I'm hoping staying on the lower dose will be more of a relief -- time will tell.  

Here's to the lower dose being the key to a hopefully, very boring week,
and of course, a sweet New Year.

Sending Love and Light,

B. 

Can we be grateful and upset? Yes and yes.

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One of the most difficult pieces of this disease is how everything can be ripped away in an instant.  Health for a twenty-eight year old woman in this body is never taken for granted, and every moment that I feel well I hope to goodness I utilize and soak up as much as possible. Everyday, every moment.

So when a set-back happens after fourteen months of wonderful health (which I never want to seem as though I'm complaining or kevetching because I am so grateful). To put it bluntly, I get pissed. I get upset. I get so frustrated. In most scenarios I look to the silver lining, I can find something beautiful in this amount of pain or look what I achieved in this amount of time... But, I've slowly (it's only taken six years right?) come to the realization that I can be grateful and still be upset.  Being upset or angry does not take away or negate how fortunate I feel.

I am so, so incredibly blessed not only with my support system, my resources, my education, my family, my intake of food and ability to access and afford physical support networks (gym, yoga studio).  I have the most amazing family one could ask for that continue to tell me to slow down, there is no rush, be where you are not where you think you should be. 

But, but, but... when all of this started in June/July I had no idea the amount of time I would be in pain, discomfort, and immobile.  I did not see this one coming -- and I usually do.  I struggle with thoughts of how angry or down am I allowed to get before I seem ungrateful or not appreciative of what I have?  So many other warriors are fighting harder battles, so many are no longer here.  A part of me fights with my inner soul about all of this.  Do I have a right as a six year veteran of cancer (who is living a semi-normal life) to be livid, grieve, and mourn the last three months?  Do I have a right after I worked extremely hard at school looking forward to a full-time job to kevetch that I may only be able to get a part-time job, and that is probably after two more months of recovery?  Do I have that right? And does that take away from understanding that I still appreciate my time here -- no matter the pain or discomfort.

These last three months, I really questioned myself.  Where should I be at twenty-eight? Where should any of us be? Why is that the question though, why are we setting ourselves up for another failure.  When I asked myself where I should be, I really should be focusing on where I am.  Today, I can get up. Today, I can do some yoga. Today, I get to see good friends. Will I get to tomorrow? eventually. But, today is today.

For all the ups and downs that have surfaced this summer I do have to say my friends are some of the outstanding, beautiful, just down right amazing people in the world.  I surround myself with people who lift me higher and along with my family, and my partner, I still say I would not be here without my pockets of friends throughout the east coast.  This weekend I had the pleasure of sitting down with one of them, an amazing young man who has his entire life in front of him and we discussed some of these issues.  Society, social media, Facebook -- the pressures of our culture. What is next? where do we go from here? What age do we need to be getting married and having kids without feeling like a failure?  Goodness the normal pressures of a twenty-something year old are sometimes too much to bare.  A part of me grieves for my own generation as well, at least I have a physical illness that puts some of these things into perspective. (Again, here I need to be grateful, because this is what I do, I am still working on it).

I've realized more and more that people should get to feel how they want to feel. So, why can't I? I feel the same pressures (at times) from our society, but mine is more focused on where I personally thought or think I should be professionally.  It's definitely not the same dynamic as a healthy twenty or thirty something year old, but this voice whispers in my ear from time to time. And this is where I found myself this summer.

Thinking:
- I need a full time job
- I need to get myself physically 100 percent in 2 weeks
- I need to move immediately now that I've completed my degree
- I need to be superwoman. I need to force my feelings and my thoughts in a direction that aren't there yet.

And truth be told, I wasn't. I am still 'working' on being here -- and not where I should be.  I took the time I needed, and still need to be heartbroken.  Here I was, jumping through another hoop, another setback, another few months of being sick and immobile.  And in my world, when I physically can't move, emotionally I feel backed up and immobile as well.  It's a horrible cycle, and eventually I come out of it stronger (like most of us) I bounce... eventually.

But this time, maybe because it took so long for this diagnosis to happen and we all struggled with what was really going on and the horrible unknown -- maybe, just maybe, I needed more time than I was willing to give myself.  Truthfully, I, and the rest of the cancer world never ever gives themselves enough time.  Somehow most of us out there have this mentality that we need to get through this fight right this second, we need to focus and be 'strong.'  That is the cancer culture, and if we aren't... some of us look inwards and see a failure.  An unfortunate attribute to this disease, especially when you don't feel it.

After months of refection and time it always seems to come back around to one major concept.  Be where you are.  Feel how you want. Can I be absolutely, incredibly grateful for the life that I have while others are struggling? Absolutely. It's definitely not the most pleasant feeling in the world, but I know when I am struggling and others are not, I am still very, very pleased and happy for those individuals.  My anger I've realized, or sadness at some times, does not take away from anyone else's pleasure.  And, it does not take away from mine.

I am not one single emotion or dimension, I am dynamic, I have depth, we all do.  So allowing this anger and frustration to surface, be dealt with, reflected upon, and felt I've realized can only help me.  I get to be where I need to be that day, pissed off at the world, or overwhelmed with the beauty of my life.  And I get to struggle and still feel loved, appreciated, and one of the luckiest woman in the world.  I get to feel however I want to feel -- It's just nice that I've started allowing myself to do it.

Here's to being where you are, today.

Sending Love and Light,

B.
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Cancer news: Started Revlimid at 10mgs this week and bumped it up to 20mgs today, no side effects to speak of just yet. I've once again finished off another set of steroids -- so now we wait to see if the fevers return, or the Revlimid will force the disease back enough so I can continue to feel physically well.