Sherry Ballou Hanson

When my cancer first came back, one of my sisters was simultaneously diagnosed with a stage four head/neck cancer. I hardly know what to say about that period of time, even today. She endured a horrible 15-hour surgery that included taking a small bone from her lower leg and creating a lower jaw out of it. She came out of this surgery no longer able to eat solid food and had a stomach feeding tube. We were both going through chemotherapy and she was also having radiation.

The anger over our situation threatened to overwhelm me and the grief of watching my sister lose ground was stunning. The usual questions — 

Why me? Why her? Why this family? What did we ever do to deserve this?

My gyn/onc recommended a counselor who worked only with cancer patients. The first time I saw her I sat in the chair and swore for half an hour. The next time, I cried, as the pictures of my dear sister played over and over in my mind; on my third visit, after my sister died, I was able to talk. I could finally accept the situation and try to move on.

The next time I needed to talk to someone was during my recovery from my third surgery for ovarian cancer, a year after my sister’s passing. The single cancerous lymph node was located between my aorta and vena cava, declared inoperable by my gyn/onc. My son helped me find a clinical trial that would take me if they could get one of their surgeons to operate, and then I would enter their clinical vaccine trial if I survived the operation. On a scale of one to ten in terms of difficulty, my surgeon declared afterward it was an eleven, but I survived. I came out of the surgery unable to picture a future (we were literally in the process of moving across country to live near our son), unable to raise my head or hold it normally, probably due to the positioning during surgery. I could not sit up without feeling nauseous.

This “recovery” period was totally unlike the first and second ones. I did not know who I was going to be anymore, me who had always rebounded from everything. All our possessions were in storage; we were between houses and leaving 21 years in Maine and the best friends I had ever had. Could I even continue to be a writer if I was going to start over in another state? I felt pretty crappy.

This third surgery took place at Loyola Medical Center in Maywood, Illinois, while en-route to Portland, Oregon, where I have now lived since 2013. Though I am not a Catholic, I was raised in the church and Sunday school life. The priest at Loyola came to comfort me, also a counselor, who returned daily while I was in hospital. This counselor called me twice after I was released to check and see that I was okay, which meant a great deal. With the help of the priest and counselor, I was once again able to move forward as best I could.

There is no such thing as “closure,” as we all know if we have lost someone. My sister’s death was a milestone, where I took a fork in the road. She is always in my heart and it is now seven years since her passing. As for my situation, I was pretty much a zombie for the first six months here in my new home. I had to undergo five weeks of daily abdominal radiation before entering the clinical trial and that was rough.

Why talk to someone outside friends and family? No matter how well-meaning and caring, the day-to-day help they give, and the love and grief, no one can really understand the horrible places we “go” in our heads at the dark times. At this point in my family’s continuing avalanche of cancer, I talk to my surviving sister, who is now a caregiver for a husband with cancer, and to my brother who survived AML in 2016. Outside of these close loved ones, I can always talk to a fellow volunteer at the Ovarian Cancer Research Alliance of Oregon and SW Washington, or those I volunteer with through Oregon Health Science University’s Knight Cancer Institute.

I can talk and they will listen; they can talk, and I will listen.

Articles

One cancer survivor discusses the need to talk to others during and after her treatment, and the healing ability of listening as well.
 

When I Needed to Talk

With neuropathy as a result of treatment comes a whole host of issues. The first one I can think of? Oops, there goes the wine! In more ways than one, actually, as wine is probably one of the last things you can enjoy while undergoing chemo. And not only can you not enjoy it, but when you try to lift that glass onto your kitchen counter, neuropathy will cause you to instead bash it against the edge. Hopefully this was not your special glass. If you try it again while in treatment, pick the cheap old glass you got at a yard sale. No big loss. The bashing goes on for a while but it does get better.

There is also this thing I call “the twitch”. And even 10 years out from my initial chemotherapy experience, it is very much alive. Example? I poured a cup of coffee and go to set it on the table, but at the last moment my hand twitches and the coffee slops all over. I usually swear when this happens — it’s better than heaving the damn cup at a wall – but the swearing does help, especially after ten years of this.

Grip strength is another issue. Can’t open that olive jar to get at those bleu-cheese-stuffed babies? Maybe it’s the raspberry jam for that peanut butter and jelly sandwich at lunch time. I have this old gadget called a jar opener that belonged to my mother-in-law and let’s just say that I’d starve without it. Fortunately, it adjusts small enough to open a screw-top on a bottle of wine. Again, I’m 10 years out and still dealing with this issue. So no, this effect has not improved much over time.

I am a walker, which is probably one of the things that helped me make it through three adventures with ovarian cancer. I had to give up roller blading when I passed out once, and dropped downhill skiing from my schedule after the cancer came back the first time. Running eventually went too, but then I am 75 years old. So this walking business is very helpful — but balance issues after treatment cause me to wander off track sometimes as I take my evening walks. Someone watching me from behind might think I was plastered, but really, I’m just trying to walk down the sidewalk. It is better than 10 years ago, but it will never go away.

Falling is also a problem. In fact, I’ve come close to falling on my face. How embarrassing. One time after it happened on a walk, a man yelled out his front door, “Are you alright?” I thanked him, answered I was alright, just clumsy, but the anger surged, and then the self pity, as I wondered what I would have done on that cold, dark night if I had fallen on my head. What trips me up? Lifted sidewalk slabs, curbs I fail to focus on, fallen branches, but often just my clumsy neuropathy-affected feet that don’t always register in my brain. Mind you, this hasn’t happened in two years, though I sometimes don’t lift a foot high enough and am reminded again to pay closer attention.

Then there’s the #$%^ double strikes on the keyboard! I probably take more time cleaning up my typing than I do to put together a whole blog, thanks to double strikes with my neuropathy-affected fingers. The twitch also enters the picture, causing a finger to snap sideways at the last second. But I’m a writer; that’s what I do, damn it, and I’m not giving up!

While all these issues are bothersome, I have not broken any wine glasses recently or fallen flat on my face. The jar opener remains a fixture in my life, as does the twitch. Wandering on my walks is not as much an issue unless I am tired. The typing issue is front and center and, I suspect, will remain there.

If you’ve experienced neuropathy, you know what it entails.

The Falling, Wandering and Crashing Business of Cancer Treatment Side Effects

Having lived through cancer and all the ups and downs it comes with, I’ve relied on my caregivers to help me when I cannot help myself. Here are a few ways caregivers can help:

I estimate that only 40 percent of what the oncologist says after I heard the word “cancer” actually registered in my brain. To caregivers in the room at the time of diagnosis: be there to take notes and to ask about suggested treatment protocols, scheduling, also about any possible trials, especially if the cancer is a late stage or a relapse. In my case, both my sister and my daughter-in-law were there for me.

If the patient is younger and still working, you as caregiver can help get insurance coverage information from the employer. When she goes for follow-up visits and treatments, be sure the insurance cards go along. If insurance is not going to cover all expenses, ask the patient navigator about financial help. The navigator is often in the best resource to help you find special funds that might be available.

It's also important to be aware of the time needed for treatment and recovery. If the loved one is still working after surgery, what is the allowed recovery time off from work? Many patients with cancer will be on chemotherapy or radiation, maybe both. Is there flex time for that? We all know about “cumulative effects” of these treatments, so recovery takes longer as treatments accumulate. If your loved one has young children, what will be the arrangements for their care?

Treatment details are also important for the caregiver to make note of. What will surgery involve, exactly, and how long will their loved one remain in the hospital for recovery? If chemotherapy is planned, what are the chemicals and their side effects? How many infusions and how often will they occur? What are the side effects of the specific radiation protocol? These are all critical details. Some patients want to know all of it, while others will need to shield themselves and focus on getting through it. You, as a caregiver, will need to know all of it.

If your loved one will be receiving a targeted therapy or immunotherapy, or will be in a clinical trial, find out all you can. Participation in clinical trials requires specific protocols and you want to know up front if your patient will be required to travel long distances for the treatments and/or follow-up visits. Check out 

 if you want to see what your options are. Your patient navigator can provide guidance, as there are thousands of ongoing trials.

Another important part of being a caregiver is saying yes to offers of help. Telling the family, especially young children, about what is going on is tough. This may be your initial role, helping your loved one discover how to do this. Other loved ones and close friends do want to help, but you should be specific in your requests. Rides to doctor appointments and to treatments are critical and if you can delegate some of these, you will be in better shape to keep the big picture in mind. Some helpers might be great at providing meals for the family, someone else invaluable at keeping up with paperwork and insurance forms. Depending on the longevity of the cancer battle, some help may be needed in the home to keep up with basic duties like cooking, cleaning, laundry and grocery shopping. Depending on the season, yard work or snow cleanup is a big help.

Keeping your loved one’s quality of life top of mind is always important, too. Getting your loved one to eat might be tough, but remember, it is most important to eat something rather than focusing on specific nutritional guidelines at this time. The new anti-nausea meds work well for some but not others. Always report any difficulties to the oncologist’s office right away to try and get on top of this issue. Exercise is necessary if possible, be it a walk in the park or even a few laps around the living room.

Most importantly, as a caregiver, your role is to be supportive of your loved one’s hopes and ideas, while helping them navigate day to day life with cancer.

One patient provides potential caregivers “a guide to help you help me”.

A Guide for Caregivers

On a scale of 1 to 10, the surgery on July 8, 2013 was an 11.

I made it through my third major abdominal surgery in four years for ovarian cancer, and according to my surgeon, Dr. Amy Lu, head of the liver transplant team at Loyola University Medical Center in Illinois, we made history. And then my husband and I drove on to our new home in Portland, Oregon.

When my sister in Maine died in December 2012 of cancer, my husband and I decided it was time to leave Maine and move to Oregon to be close to one of our sons. In April 2013 we flew to Oregon and found a house, sold our home in Maine, and a routine CA 125 blood test indicated that my cancer was back. This time my oncologist said it was inoperable.

My son who lived in Oregon was also a doctor, and he helped me find a clinical trial to apply to. The trial accepted me, provided Loyola could find one of their surgeons to take out the cancerous lymph node located between my aorta and vena cava, and retrieve enough tumor lysate for the trial.

It was not clear if I would make it through that surgery. If anything got nicked, it could be all over. There was a vascular surgeon on the team, but Dr. Lu did a stellar job and I lived.

After six days in hospital I traveled back to our other son’s house in Illinois and recovered six more days, during which I got bitten by a deer tick. At my final appointment with Dr. Lu, before getting clearance to drive on to Oregon, I displayed the classic bulls-eye mark of the tick bite and she had to prescribe the antibiotic for me in addition to checking me out for departure.

After I recovered from surgery in Portland, I underwent five weeks of daily abdominal radiation where the nasty tumor lay, and it was horrible. On December 10, I flew to Illinois and went through tests and lab work, then met Dr. Patrick Stiff and the trial team. They made a magic potion out of my tumor lysate cells and my killer-T cells that were taken through a process called apheresis. This vaccine was injected into me approximately every two weeks for nine sessions.

At that point, I considered my history: my grandfather died of multiple myeloma; my father died of AML at age 65; I was diagnosed with ovarian cancer at age 65; my sister was diagnosed with mouth cancer at age 65. All of these people have died, yet I live. This time, do I dare say I am cured? Time would tell.

“When learning about a second relapse, the only thing I could think was, ‘Oh no. Not again. This cannot be happening.”

Sherry Ballou Hanson

When I Needed to Talk

The Falling, Wandering and Crashing Business of Cancer Treatment Side Effects

A Guide for Caregivers

Dealing With a Second Relapse

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