Tuesday, August 27, 2013

Rhode Island Escape and CEP Start

No energy to write a long blog, though I’ve got many story nuggets collected. Consider this an executive summary of what’s been going on with me.

We spent two weeks in Narragansett, Rhode Island. It is beautiful, especially the beaches. We rented a cottage the first week with Craig’s brother and his wife and our niece and nephew; the second week with my parents and sister. We had visitors on top of that and it was relaxed and easy – for the most part.

-Getting to play with our niece and nephew in the sand and water and be with them for their morning and evening routines. They are adorable.
-Spending time together with our brother and sister-in-law who we rarely get to see.
-The sun and ocean and sand: warm, sparkling and soft.
-Bringing our beach chairs right down into the water and reading a book while the waves rode over our feet.
-Being with my parents and sister on the beach all day bringing back so many childhood memories.
-Lobster rolls.
-Del’s frozen lemonade.
-Sunset cruise in Newport Harbor.
-Staying for a night at a special friend’s fabulous Newport ocean-side beach house – even though Craig lost the key and the debacle that followed.
-Escaping for a favorite couple’s wedding and reconnecting with many college friends from UConn.
-Watching Jaws on the beach with thousands of others on beach chairs under blankets with the ocean and a full moon behind us.
-Visits from friends and their kids and even an overnight with my parents’ longtime best friends and their son.
-Fantastic outdoor showers.
-A visit from my brother and his wife on the last night.

-Adjusting to the side effects of the difficult CEP oral chemotherapy I am currently on – incredible fatigue, lightheadedness, thrush and mouth coating, no appetite. I started it on vacation so every day brought a little surprise. 
-Difficult mornings/early energy then big crash that didn’t jive well with other’s schedules.
-Major frustration surrounding how weak I am and not being to help out much with the kids or beach packing or anything, having to be so focused on not throwing up, and on garnering the strength to get my bum from the house to the beach.
-Breakdown moments missing my old days of swimming and boogie boarding and biking and paddle boarding – all of which I couldn’t do. Tried to push resentment away but it was difficult.
-Breakdown moments surrounding people having to help me and again, not having the energy I wanted. I had to keep shifting expectations and knowing that everyone else was there for a slow, relaxing time too and all did their own thing in our own time. It was very hard to let go.
-After one week on the CEP, I had to get my blood counts checked at the local hospital. Got a call that night from Dr. O that it was unsafe for me to go through the night without a transfusion. My platelets dropped to 6,000 and my hematocrit was under 23%. I spent the night in the ER/hospital with Craig receiving both blood and platelets. My port leaked and I woke up covered in a bloody mess. Otherwise, the nurses were very kind and the facility beautiful.

Because my counts dropped too low, I have been pulled off the CEP regimen until they rise. This was not unexpected as we knew it’ll be a fluid process as we watch how my body reacts to it; that’s the only reason I signed onto the idea knowing that there were no hard and fast rules but that we would listen to my body. I have not been on treatment for about 9 days now, only remaining on the Prednisone which is the “P”. I’ve been on Prednisone for almost two years now regardless, but it still makes me crazy. I’m very emotional and still dealing with breakthrough pain, pain management and functioning on narcotics trying to find some kind of balance.

I was in the hospital again for the day yesterday needing more blood. It is obvious that we will need to reduce the dose of this regimen or move on from it. I’m worried about playing catch-up again. The longer I am off of treatment because of low counts, the more chance there is of the cancer growing. Again, seeking that magic drug that won’t knock me down and will just keep things at bay.

We’re now talking about adding in Rituxan, which has just started being used off-label for CD-20 positive Hodgkin Lymphoma. It is a targeted antibody that has proven effective in NHL and CLL. Supposedly no side effects since it is even more targeted than SGN-35, however, big risk of scary infusion reactions.  I think that it is worth a shot though.

I took a complete break from all correspondence, social media, writing, blogging, etc. so it’s been a bit of a crash landing getting back into reality. Having everything scattered and unopened does not help my anxiety level. I can’t run and hide from reality forever. I just want to be comfortable physically and emotionally again and am working day by day to get there: some days are easier than others. Ones spent on the beach with the people I love were certainly the easier ones. Now it’s back to being alone every day and trying to figure all this shit out. What do I do with this time? How do I make these decisions? What if I’m just plain tired and don’t want to deal with any of it? Why can't I just keep burying my head in the Rhode Island sand?

Wild child, Anna. 

Big boy, Jake. 

Our Bonnet Shores rental - perfect.
The ladies in the back of the Jeep. 

Fellow sailors.

Newport sunset cruise. 

Beautiful Buddha in the sand. 

Flowers bigger than my face at the Umbrella Factory - and I have a big Prednisone-swollen face. 

Perfect set-up. 

The whole gang on the last night. 


  1. I am so glad you were able to spend time on the beach, in the sand, and lounging waterside. You have been in my thoughts and prayers and I will continue my prayers. You look mah-va-les dahling.

  2. I want to go back! Such a nice time!

  3. Went away, came back, caught up on your blogs, then waited and waited for the next one! So glad you had a good time--how is it you claim to feel like crap, tired, nauseous, thrush--yet you look so good???
    Keep on truckin'.
    Thinking of you, especially with those Jewish holidays around the corner.
    The other Karin Diamond

  4. Karin, lovely to hear your voice again.
    --VIrginia from Hartford
    PS--i remember reading in your blog that you were hoping to use your blog for writing a book/memoir? You're such a wonderful writer and so many of us in the HL community are hungry for insight/info/to-not-feel-alone; Sending you positive book-writing thoughts if this is something you're working on :-)

  5. Hi Karin, I've been reading your blog for a while but haven't commented until now. Just wanted to say that I'm so glad you had good times in a beautiful place with loved ones. I check your blog often and pray for you and your family.


  6. Narragansett, my home town ~ beautiful beaches. All in all it seems like everyone enjoyed getting away. Love sitting with my chair in the water too...feels so good!
    Prayers for calm within

  7. in the tumultuous times in thoughts& tender body the care taken and given by the ocean was a needed respite. the waves ~undulating in and out, their rhythm, their fluidity - the sky and water together to view - using all ones senses to soak it in -- and the warmth of sun and loved ones. though obviously the time was pulsated by the unwelcome realities, it was obvious from your post that much joy and peace was garnered from this time.

  8. As always... holding you in our hearts, thoughts and prayers. Enjoy the late summer sunshine, mums and maybe a local fair. Fried dough and a blooming onion might be just what the doctor ordered!

  9. Hi karin.... I hope you are feeling well... sending you lots of positive energy ....Wendy