My support network

As the year winds down, I am preparing to return to work on January 3. I am so incredibly lucky to have had over 3 months to recover from my surgery. Here is a starter list of everything I am grateful for:

• Washington State Paid Family and Medical Leave program, which allowed me to have a paycheck but not use up my sick leave.
• My boss who has been incredibly supportive and understanding.
• The co-workers who have shouldered my work while I am gone.
• My employer who provides excellent insurance.
• The opt-in cancer insurance I luckily signed up for only six months before my first cancer diagnosis in 2015.
• My husband who did double-duty on housework, child-raising, etc., especially during the weeks immediately after the surgery.
• My brother who changed his travel plans to help me after my hospital stay.
• All my wonderful friends and family members who brought us delicious, healthy food through the meal train.
• A medical care team who is talented and attentive.
• Everyone who has reached out and kindly wished me well.

What’s next for me:

I’m going to continue to have monthly injections of Sandostatin. I’ve had four so far. They hurt and I’m sore for several days afterwards, but it’s worth it! I’ll get blood work done each time too. My Cromogranin A (CgA) was a little elevated this month (the chart below shows how dramatically it dropped after the surgery), but since my IBS could also be affecting it, take those numbers with a grain of salt.

My next CT scan will take place in the fall, one year after my surgery. Since neuroendocrine is a very slow-growing cancer that’s the only scan I need for now. However, it’s worth keeping in mind that my cancer didn’t show up great on the CT scans I had before, so at some point my oncologist will probably want to do another DOTATATE-PET scan, but I should have some time (hopefully years) before they decide that’s necessary.

I’ve started working with an online therapist and I like the person I’m seeing, although their schedule might be a challenge after I return to work. I’ve found our sessions really helpful as we talk through things.

I will continue to get used to my new, menopause life. I sure don’t miss PMS or my period, but the hot flashes, hair thinning, etc. aren’t a lot of fun. I have an appointment with my new gyno in March, and we’ll see what they say in regards to hormone replacement therapy and my Factor V Leiden.

I’ve joined several online groups that are specific for neuroendocrine cancer and menopause, and this one, this one, and this one are my favorites. It really does make a difference knowing there are other people out there who are going through the same struggles that I am.

In the end…

I have cancer. I will always have cancer. There is no “cure” for neuroendocrine cancer; surgery is the first and best line of defense. My Big Surgery removed a lot of tumors, but not all of them (due to their location on my diaphragm and risk of nerve damage), and there are probably new microscopic tumors growing in me right now. My goal is to slow down tumor growth and manage symptoms so I can have a fulfilling life.

I have good days and bad days, but at this point I’m happy to report there are more good than bad. My energy levels are slowly but steadily rising, and I’m looking forward to returning to work. My scar is looking healthy. My physical therapist is happy with my progress. I’m good at being an advocate for my own health, and I have an incredible support network.

I am lucky!