Much has happened in my life since I last wrote a post here two months ago.
More quickly than you might relize I left the “a” out of “realize,” I went from noncancer patient to cancer patient. Diffuse large B-cell lymphoma, Stage 4. It is a non-Hodgkin lymphoma in which a kind of white blood cell called lymphocytes alters the usual blood cell makeup. According to the Leukemia & Lymphoma Society, it usually starts in lymph nodes in the neck or abdomen, it commonly affects middle-aged or older persons and it usually has no known cause.
As far as cancer goes, I’ve been told this is a good one to have. My oncologist says it has a 50 to 60 percent cure rate.
The pain in my back started gradually in January. It gravitated to my left shoulder blade and traveled down my left arm. The fingers of my left hand started tingling, and at times the pain seemed unbearable. After living with it for about 10 days, and noticing worsening conditions, I saw my family doctor. He referred me to an orthopoedic surgeon, who ordered X-rays. Both doctors wanted me to have an MRI, but my insurance company was unwilling to approve it just yet. The pain worsened — resulting in two trips to the hospital emergency room within five days — and I lost more feeling in my left hand and arm. Each doctor visit included a prescription for a pain killer stronger than the last.
Finally, four days after that second ER visit, I had an MRI, on a Friday. The following Monday I learned I have “a mass” growing in my neck, on the spine. It is crushing a nerve.
Because of the potentially lethal strength of my current pill regimen and the debilitation the excruciating pain caused, my 88-year-old mother, eight siblings and good friend immediately stepped in to stay with me around the clock. I resisted at first but soon realized I had little choice. If I stood for even 2 minutes, my back and arm pain flared up. I couldn’t fix myself meals. I couldn’t tend to my cats. I couldn’t even unscrew some of the bottle caps to get at the inefficient drugs I had.
More tests followed: chest X-rays, a mammogram, bloodwork, a urinalysis, a full-body bone scan, a CT scan. I was as patient as I could be, but the torturous discomfort continued 24 hours a day. I often wore my pajamas to my doctor appointments, and I went days without taking a shower or washing my hair. Before shuffling out the door, I’d ask my caretaker to throw a cape over my clothing to shield me from the cold — but also to hide that I wore no bra; even with help, I just couldn’t endure the physical suffering caused by putting one on.
I went to the ER for a third time on Friday, March 13, and at the end of the day was transferred to Indiana University Health Methodist Hospital in Indianapolis, where I spent the next week surrounded by neurosurgeons, oncologists, hospitalists and any other number of professionals.
By Tuesday, the psychiatry department showed up.
At the end of the counselor’s first visit, she asked if it would be OK for her to stop by to talk with me every day of my stay. Sure. I have been dealing with depression for more than 25 years, and I learned a long time ago that if talking helps, I should talk. Late Wednesday afternoon when the psychiatrist visited to talk about a change in anti-depression medication, I asked if his colleague would be visiting.
Another colleague was ill that day and the counselor I had spoken to was “pulling double duty,” the psychiatrist said.
But was it really “double duty” if she didn’t see me? Given the vulnerable situation and pain I was in, I simply did not have the fight needed to get the mental health care I required. Unfortunately, that is not abnormal.
Of course, as an adult, as a working professional and as a member of several mental health organizations, I perfectly understood the counselor’s/hospital’s predicament and change of plans. As a new cancer patient, and as someone who suffers depression, however, I was undone. I felt I had “clicked”with the counselor. I found her easy to talk to and empathetic. I was looking forward to telling her more of my story and talking out my feelings of anger, incredulity and physical pain.
Having that postponed a day reminded me of the long time lapse that often happens when making an initial appointment for mental health services. How deflating it is to finally decide to get help for a mental illness only to be met with a weekslong delay. For new patients, nowis when they need help and when they finally agree to get it. To a depressed person, having to wait two weeks or four or six can be like being given a shovel and told to dig your own grave: It is daunting, it is devastating and it makes you think a lot about hopelessness and death.
Three weeks ago I had a port surgically implanted under the skin on my upper left chest. The small piece of plastic attaches to a large vein by a catheter, which will deliver cancer-killing medications to my body and through which blood can be drawn when necessary. I received the first of an expected six chemotherapy treatments, which I will get every three weeks. A big goal during these first few weeks will be to avoid infection. This past weekend, my hair started to fall out — and will continue to fall out for the duration of the five-month treatment.
As I am able, I will Blog here about my journey through cancer. The journey is temporary and I have faith in what’s on the other side of this illness. I have to believe in that. I have to.
Martha Rasche is a member of the Dubois County (Indiana) Public Health Partnership Mental Health Committee and the county suicide awareness coalition as well as the National Alliance on Mental Illness. With funding from a grant from Memorial Hospital in Jasper, Indiana, she has been writing columns related to mental health. Email her at firstname.lastname@example.org.
When You Can’t Take the Pain Away, What Can You Do?
1. Don’t say, “Let me know how I can help.” Be specific. “I’d like to —— for you, if that’s OK.” One of my sisters volunteered specifically to clean the litterbox. (Another sister said she’d do anything but clean the litterbox!)
2. When you call, ask if it’s a good time to talk/if the patient feels like talking. If the answer is yes, be aware during the conversation that “yes” can turn to “no” with a flare-up of pain, a nurse walking into the patient’s room, a call on another line from a doctor or hard-to-reach family member, or a dozen other reasons.
3. When you call and leave a message, include something like, “If you are feeling up for it, give me a call back. If not, I’ll call you some other time.” My cousin Marilyn caught me at a terrible time when she called. I was in pain and didn’t feel like talking, but I wouldn’t have wanted to miss out on talking with her or to cause her to be waiting for her phone to ring. The way she (a nurse) phrased the message let me know she wasn’t sitting by the phone and that she’d take the initiative another time. (She called the next evening and she and her husband visited.)
4. Try to hold yourself together emotionally, even when the patient doesn’t. On the first morning I faced a cocktail of 10 pills and soon after taking them vomited and peed myself, I was glad that the only person in the room who cried was me. My sister-in-law, a nurse by profession, instantly turned into my personal nursemaid, and my sister put a calming hand on my shoulder. Somedays, I told them, we’ll all have a good cry together. But not that day. Not then.
5. A friend — named Martha — had a particularly wonderful way of letting me know she is there for me 24/7. Not only is she on my “available at night” list, but she said that if I call and say nothing, that’s OK. (Caller ID will tell her it’s me and not some stalker.) Sometimes, she said, we have emotions for which there are no words. How true. Martha and I were friends in high school and several years ago we resumed our friendship. I’ve always admired her outlook on life and how she seizes the day in her own. My treatment plan wouldn’t be complete without her.
6. Sure, bring soup or casserole — but not a lot of it. After my family started around-the-clock care for me a month ago, my mom and some of my sisters brought me one or two servings of various delicious food — including vegetable, chili and chicken-noodle soups. My brother provided me with a couple of heartier meals — grilled chicken and beef and noodles. My appetite is low and what sounds good on one day doesn’t sound at all tasty on another. I do like having a variety of flavors to choose from at any given mealtime, though. (I live alone. If you are preparing a dish for a patient with a family, cooking for the whole gang is the way to go.)
7. Send a card, email or Facebook message. Whether you go the funny or spiritual route, these notes are truly day-brighteners. (If you know the person texts, send a text. I happen to pay per message I receive or send, so I prefer not being contacted that way.) On the night my cousin Mary had written out a card for me she attended a home economics meeting and won the cash door prize. She sent it to me just for fun. I laughed aloud when I read about me being her door-prize intention, and I know she smiled as she slipped the bills into the envelope.