Chemo Round Two

It's been awhile since my last post! I intended to update this blog much more often, and hope to do that going forward. My medications have proven to be a big hurdle to writing, or doing almost anything productive, as I fall asleep within a few minutes of sitting down at the computer.

First, I owe a huge debt of gratitude to every person that has reached out to us and supported us in some way. We are totally overwhelmed (in a good way) by all the kind words, good thoughts, prayers, and offers of help we have received. We are so fortunate to have such an amazing network of friends and family, and are so grateful for your support!

The short version of this update is that, while my first two-week round of chemotherapy brought numerous side effects that involved stints in the hospital to get me stabilized, the second round (currently coming to an end) has been less problematic.  Progress of sorts.

Please read on if you're in the mood for a longer update.

A lot has happened since my last post. We'll start with my trip to Boston. I traveled up to Boston to visit the Dana Farber Cancer Institute in early April, and had a wonderful trip. My Aunt Rebecca came with me, while Mehrtash and my parents held down the fort at home. We were totally impressed with the facilities and people we met at Dana Farber. They even have volunteers that show you around, a guided audio art tour (some of my favorite works are posted to the right), and awesome backpacks filled with all kinds of goodies for children whose parents have cancer.   Most importantly the doctors, nurses, and other medical personnel were incredibly kind, compassionate, and accessible. I couldn't recommend them more highly!  I also got to see some lovely friends, which alone would have made the trip worth it (thanks for the visit, Babak and Ashley!).

The oncologist at Dana Farber agreed that the treatment plan proposed by my UNC oncologist was a good place to start. He also confirmed some of the unpleasant realities of neuroendocrine cancer. Because it's a rare cancer, there aren't a lot of good data on what the best treatment plan is.  His exact words were "we really don't have a standard of care". The doctors go with what they hope will be an effective treatment, and then we keep our fingers crossed that it will work! 

The chemotherapy plan that we settled on is an oral regimen referred to as CAPTEM. It's not at all what one would imagine when thinking of chemo. I receive a shipment of (very toxic and very expensive) pills, and take them in the comfort of my own home. It's convenient, but a little scary and lonely at times. I take the pills for 14 days, and then get a 14 day break. If it helps shrink the cancer, and my body can tolerate it, I may continue with this pattern for the rest of my life (gulp).

My first round of chemo was rather unpleasant. The day I was scheduled to start chemo, I got up, took my anti-nausea medications (along with a few other pills), and promptly threw them all up. This was before I even got to the chemo! I was able to get through the first few days without too much difficulty, but by day five or so, I was so nauseous that I couldn't hold anything down. One of the downsides of oral chemotherapy is that if you vomit, you lose the medication, so controlling nausea and vomiting is absolutely essential. I was admitted to the hospital to get the nausea under control, but my pain quickly escalated (no one knows why), and it took about a week to get my medications sorted out. Part of the problem was the sheer number of pills I had to swallow, so the doctors switched me to other means of administration when possible (patches that attach to the skin, dissolving tablets, suppositories, etc.). I went home after about a week, but was readmitted for severe pain after just a few days. It turned out that the doctors had failed to put me on a sufficient bowel regimen to combat the horribly constipating effects of the narcotics, and my colon was completely backed up, causing extreme pain and cramping (TMI?).  Figuring out how to control my primary triad of symptoms (pain, nausea, and constipation) has proven to be quite complicated!  I spent a few more days in the hospital clearing out my bowel, finishing my first chemo regimen, and trying to find the right combination of medications to control my symptoms.  Between the two visits, I was in the hospital for 12 days.

I spent most of the first week that I was back home in bed -- I was very weak, and struggled to make it through the day without a very long nap. And then one day, without explanation, I hit a turning point, and my energy returned. (I'll attribute it to a wonderful visit that morning from Nazaneen and Jon.) We decided to go out to the mall to buy some much-need shoes for newly walking Ruhi, and I was amazed by how good it felt to simply leave the house with the family to go on an errand! I've had a bad day here and there since then, but for the most part have been feeling good, and am so grateful to feel a bit like myself again!

I'm approaching the end of my second round of chemo, and, aside from incredible sugar cravings and a failed experiment to see if I could drop one of my anti-nausea medications, everything is going well. My oncologist has scheduled me for a CT scan after I finish this round of chemo to see if there has been any change in the size of my lymph nodes. There is some uncertainty about how fast this cancer is growing (my biopsy showed conflicting information), and since we don't have a good sense of how my cancer will respond to this treatment, we need to keep a careful watch.

In addition to my conventional treatment, I've been exploring various complementary therapies. I've been seeing a (rather unconventional) chiropractor and acupuncturist on a regular basis, and am working with a naturopath in Maryland that specializes in helping cancer patients. We are very grateful for all the suggestions that have been sent our way, although have found it difficult to find the time and energy to research them as much as we would like. Hopefully we will find more time to explore our options in the coming weeks and months.

We have had so many generous offers of help, and are eternally grateful.  Just knowing that my family is in the thoughts and hearts of people near and far is a tremendous solace, and truly humbling.  The incredible financial support we have received has enabled us to pay some big medical bills, travel to Boston for a second opinion at a top neuroendocrine cancer institute, hire a babysitter to help with the children several days a week (I can't be alone with the baby, as I don't know when an unexpected bout of nausea/vomiting will come on, or when I might just not be able to get out of bed), seek complementary care that is not covered by insurance, and hire people to help with cooking and cleaning. These things have been a tremendous help to our family and my healing process.  I am unable to drive more than a short distance, because I get very tired and have trouble focusing, so transportation to and from appointments and help with errands has also been a huge help.  I'm also very grateful to everyone that has supported my Beautycounter business.  It's hard for me to do a lot of outreach and follow up right now, so I appreciate you helping me keep my business going (and am glad that you are making safer choices to protect your health!).  But perhaps the greatest thanks is due to my parents, who have basically sacrificed their own lives and priorities to help us and be with us almost every day, and to the many friends and family that have helped with our girls in a variety of ways (playdates, babysitting, carpooling), provided food, mowed our yard, provided a listening ear (and sometimes a shoulder to cry on), or supported us with thoughts and prayers from afar.  Thank you!

We are approaching the end of the school year, and are looking forward to spending time together this summer and hopefully getting in a little travel. My 20th high school reunion is coming up, and we are keeping our fingers crossed that we will be able to go. I miss Blacksburg, and love every chance I get to go back!

In the midst of everything else that has happened, we've had some great times as a family. We celebrated Ruhi's first birthday, attended Mona's school's spring festival and piano recital, took some family photos, and are preparing for Nura's upcoming school assembly performance and dance recital.  See some photos below, and I'll be back another time for another update.

Playing on the back porch.

The five of us.

Mona and Granny.

Ruhi's first taste of Mac and Cheese!