Cancer: The Ultimate Time Suck

Before I was diagnosed with breast cancer in 2011, I didn’t realize how much time cancer truly sucks out of a person’s life. Moving back to Chicago hasn’t gone quite the way I had planned and it’s because of cancer, not just mine, but my sister’s and our dog Zoey’s. I didn’t plan on my two-month summer vacation turning into a 5–going on 6–month sabbatical–or that I would feel that taking this time was so crucial and necessary. I’ve been job hunting and contemplating new ventures, but that has not been my main focus. Instead, I’ve been taking care of Zoey (who has now spent 3 months as an outlier); purging our clutter and making our household efficient and thoughtful; trying to be a supportive sister; and creating a new medical team for myself. All of these things require time.

Zoey

The Move was hard on Zoey. Her seizures ramped up in July and August which isn’t surprising considering just how insane those months were (we were home 2 out of 9 weekends). Too much was up in the air. However, things were much calmer in September and October as we settled into our new apartment and the weather got cooler. She had very few seizures and her energy was good (we’ve even been walking both Zoey and Bleu 15-30 minutes 5-6 times a day), which helped us out and in turn was good for her. Palliative care for Zoey’s brain tumor requires her getting different medicines 4 times a day. Tramadol, Gabapentin, and Kepra all need to be given 3 times a day (breakfast, afternoon and before bed), while the Prednisone (dinner) and Omeprazole (breakfast) are each once a day. Last week, we added Zonisamide which is given twice a day, roughly every twelve hours (breakfast and dinner). I counted this morning and she is getting 10 different pills at breakfast time alone!

Administering the drugs is a drama in itself since Zoey has never been one to take pills willingly. Greenies Pill Pockets, even the new hickory smoke flavor, only go so far before she is on to us. I had to create our own pill pocket of lunch meat or cheese and Crunchy Jif Peanut Butter early on and even that got boring/unappealing to her in September. It is a scary thing when she refuses her medicine, because that is what is keeping her going.  Luckily after this last bout of pickiness, we tried dipping her pill pockets in gravy (she LOVES Boston Market gravy!) and that has worked like a charm–for now.

Let’s not forget that there is time required to keep the meds in stock in our home dispensary (yes, I feel a bit like a mad pharmacist keeping track of Z’s meds!). Before we left NOLA, Zoey had to see our wonderful southern vet, Dr. Johanna, one last time and get all of her meds refilled so we wouldn’t have to find a vet immediately in Chicago. However, we couldn’t put off finding a vet once we arrived in the Windy City and had to visit our new rock star Chicago vet, Dr. Gail Henry, by late July. We have visited Dr. Henry 4 or 5 times so far and been in email contact in between visits. With July and August being so hard on Zoey, we didn’t think she would last past the summer and so her prescriptions were set at 2 week increments. This means every other week I am heading to the drugstore for refills. Time suck.

A quick aside about meds. In New Orleans, our vets restocked Zoey’s meds and when we had to refill in Chicago we went to our local chain drug store. Zoey’s meds–in particular the Kepra–was $175 for a 2 week dose in Chicago (while I got a 6 week supply for $111 at our NOLA oncology vet). With my not working, the cost became something we could not ignore. For some reason I decided to call Costco to see what they would charge: $21 for the exact same prescription of Kepra!!!! Craziness!!!!!! Needless to say, we have changed over all of her prescriptions to Costco and saved some serious money.

Think about it: she has been given drugs 4 times a day for most of the 9 months she has been in treatment. She can’t take these herself; they have to be administered by a human. Most doggy daycare facilities will give pills (but not injections) which we took full advantage of in New Orleans, but it is not cheap and so without my working we skip daycare and the majority of the caregiving responsibility falls on my shoulders. Someone has to be around to administer her medicine and keep her on a schedule. In many ways, we have scheduled our lives around Zoey’s schedule the past 9 months and have made choices around her illness. Many people would see us as crazy, but she’s our first pet, our baby, and we made a commitment to seeing this through. We love her and she is important to both Terry and I; however, her care is not easy.

Barb

Barb’s breast cancer diagnosis the week after we moved into our new place was extremely difficult for me on many levels and a time sucking experience my whole family would have loved to skip. Not only did it freak me out because she is my sister, but it also dug up all of the shock and fear that I experienced myself when I was diagnosed. There is no blueprint for ‘welcoming’ your sister to BC Land and I found that I felt ‘off’ much of the summer, trying to make sense of my no longer being ‘the sister with cancer’–now we both have it. What does that mean? I was able to be at the hospital for Barb’s bilateral mastectomy & reconstruction in late August and make sure that she got home comfortably, but September was weird. I was back in Chicago and checking in on her status by phone and Facebook, but not actually there in person for her in Detroit. We got in this weird fight on the phone one night over seeing a plastic surgeon about possible reconstruction for myself that I can only explain as being stress induced, but it took longer than usual for our relationship to get back to a good place.

The good thing is that Barb is recovering well from her surgeries. She was out of work for 6 weeks where she had lots of support from her extended network of family and friends. Her Oncotype DX test results came in finally. She scored at a 17 and so will not have chemotherapy and needless to say she is stoked! The Oncotype DX test gives each early-stage breast cancer patient that is tested a Recurrence Score between 0 and 100. Scores lower than 18 show a low risk of recurrence and so chemo is not recommended. Scores between 18 and 31 have an intermediate risk of recurrence and the benefits of chemo are unclear and greater than 31 is high risk and so chemo is recommended. I was an 18 and we opted not to do chemo, just Tamoxifen. Barb has started on Tamoxifen as well and is scheduled to get her expanders out in December.

Me

Barb’s diagnosis put a new spin on setting up a new medical team in Chicago. I planned to, but there was a new immediacy that hadn’t been there when we left New Orleans in our moving truck and trailer. I had reached a point in New Orleans where I was keeping BC Land at arms length and putting BC on the back burner of my life. It was still on the stove, just not on a front burner of importance. That changed abruptly with Barb’s diagnosis. I scheduled an appointment with my former gynecologist on Chicago’s north side and it was really good to reconnect with her after 5 years–especially since she remembered me! 🙂 She would have helped me set up a new medical team on the north side, but with my living in Hyde Park, she strongly recommended I use the University of Chicago for my BC care, advice I followed. I saw Dr. Chams in July, contacted University of Chicago in August to schedule appointments and started to see my new doctors in September.

I didn’t expect to be resistant to a new set of doctors, however, or feel my time suck meter kicking in. Granted I didn’t expect to see more doctors than when I was initially setting up my team in NOLA, but I also forgot that it takes time to build trust and connections. Anyway, we started with an ultrasound and a mammogram after Labor Day to check out my left breast cyst that we have been tracking since spring 2013 and the results were all good. I had an appointment with my new oncologist (and her resident) as well as a survivorship doctor who will be my new primary care physician. I met with a geneticist and had an appointment with a dermatologist. I had a baseline bone scan that showed I have the beginnings of osteoporosis and so will see a bone specialist later this month. I also went to my first appointment with a specialist in the PRISM (Program in Integrative Sexual Medicine) program which I will discuss in a later post. I’m confident that now that my initial resistance has passed, I have a really solid team forming and that when this initial period of skepticism is through, I will appreciate being part of a prestigious university medical system.

With my energy going elsewhere, I have not had much time to establish a new social life here in Chicago. My last post attempted to put my social life (or lack of it) into perspective, but I don’t think it succeeded. As much as I know that creating a social support system outside of my family and marriage is important, I haven’t been up to it frankly. Purging clutter and getting the apartment in order has been therapeutic in its own way and I wasn’t ready for the give and take necessary for re-establishing and creating new friendships. I haven’t been in the mood to put the blog posts swirling around in my head out into the blogosphere either. Good grief! I even skipped weighing in on Pinktober this year!

The good news is that this period of cancer sucking up so much of my energy is winding down. I’ve written this blog post, I’m headed to a breast cancer networking group meeting at Gilda’s Club tonight and my awesome friend Kelly is coming into Chicago tomorrow night. All are positive signs.

 

 

 

 

6 thoughts on “Cancer: The Ultimate Time Suck

  1. Kelly and her whole dang family! And I will not be so awesome after I attempt to slurp up some of Zoey’s Boston Market gravy (yum!) and the boys raid the crunchy peanut butter!! Seriously, COSTCO is awesome and I am thrilled to hear about your sis’ 17 !!!!! See you tomorrow night in The Windy City !!!

  2. Pingback: Fantabulous Fall | Searching for EMWA

  3. JoAnn, you’ve been through a great deal of change in addition to unexpected illnesses in loved ones. It sounds like you are moving forward, taking care of the things that needs to get taken care of, in an order that makes sense. Take care!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s