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Posted on 11. April 2013

Needles & Spines

by Rebecca Zook

The ambient sounds in the large tiled room suddenly cease. Everyone was listening. At first you could barely make out the whistling, but soon smiles could be seen on most of the patients sitting in the turquoise chairs. Even some toe-tapping. The tune was familiar to everyone. Someone at the far end of the room was watching The Andy Griffin Show. As the last note fades, the voices regain strength. More people arrive to fill the chairs. The smiles, however brief, are welcome and needed. Most of the people sitting in the chairs are quietly engaged in battle. Most are fighting cancer.

Often the first one here, I always sit by the window. There are roses outside in warmer months. My feet dangle in the chair, not quite reaching the floor. My shoes slip off. I feel a bit like a child here; dependent on the staff that bustles around reacting with efficiency to the beeping of the machines calling out to them. Would I like a blanket, a pillow? Something to eat? No, I’m fine. I’m here once every three weeks. It provides me with a unique perspective about people and about life. I have a treatable, but not curable blood disorder, a primary immune deficiency. Intravenous immune globulin (IVIG), an expensive blood plasma product, boosts my immune system and helps to control secondary autoimmune diseases. It’s also the only treatment available for my illness.

We are hooked up to individual machines. Mine is giving me infection-fighting antibodies. Theirs essentially pumping poison into their bodies to kill invading cells. A man comforts his wife, talking in quiet whispers. It’s only her second time here. Some patients just want to sleep during their treatment. Others are compelled to talk, desperate to make a connection with someone who understands. I’ve heard about all types of cancers here. Of people’s marriages breaking up while they are still sick. Right now, the man next to me is discussing a dog that recently came into his life. He didn’t want it. He thought he hated dogs. Now he is grateful for its affection and that it has given him something to focus on other than his cancer.

In some ways, I feel like a fraud being here. I've been asked more than once what kind of cancer I have, and I actually feel bad explaining that I don’t have it. I also envy these people. They have a shot at getting better, of never setting foot in here again. This is a life sentence for me. Every three weeks, forever, hoping that my veins hold out, but self-pity is not something to cling to.

There is another group of people who come here. I wonder at their life story, but I can’t speak with them. Hands and feet in shackles flanked in front and rear by armed guards. All heads turn as they are marched through the room and placed in their own section. For a minute, the rest of us forget about our struggles. They are the incarcerated, the prisoners, also here for treatment. I imagine the trip and time here is something they look forward to. I imagine it’s better than day after day in a cell.

A sign on the wall proclaims: “Live. Laugh. Love.” We all deal with our personal disease differently. Some are overcome with sadness or anger. Some pray. Others are stoic and practical, realistic about the odds. But we are all trying. All of us. We understand more than most that each day is a gift not to be wasted.

This blog was reposted with permission. The blog image is an original painting by Rebecca Zook titled “Prickly Pear Cactus Flower Trio.”  To see Rebecca’s art and her blogs visit: www.rebeccazook.com  or www.fineartofrebeccazook.blogspot.com/

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Comments (8) -

Linda Thornrose
5:15 PM on Thursday, April 11, 2013

Very nicely said!  Thanks for the words of perspective.  We all have so much to be thankful for...we just have to look outside of ourselves, don't we?  Never a lack of things to pray about...

Pamela Stants
8:53 AM on Friday, April 12, 2013

I absolutely love what you have written. I get my IVIG at home, but
familiar with a hematology/oncology office I can picture exactly what you are describing.

Betty m Gordon
11:08 AM on Friday, April 12, 2013

What a delightful respite on a dreary rainy day in New England to read your essay. Though I  too am now on subq, I so recall those Infusion Clinic days. I found it depressing to be there -so glad to switch to home infusions and then subq (due to vein issues). Thank you for letting us see the "beauty" in those life saving centers.

rick grosvenor
1:13 PM on Friday, April 12, 2013

I too, can relate to this blog. I also get ivig every 3 weeks at a hospital infusion center and am constantly interacting with cancer patients. I often tell the nurses that I am on a "Club Med" vacation compared to those patients.

I could also relate to the "feeling like a fraud" statement, because I too have had cancer patients assume I was one of them - especially since I lost 40lbs. my first year of treatment and an additional 10 the last two years, with malabsorption and gastric distress issues. I also wear a lot of BB caps, so I guess I look like I'm trying to disguise hair loss as well.

I'll never forget when a 30 year old woman, pregnant with her 4th child and battling stage 4 breast cancer inquired what type of cancer I had. When I informed her of my PIDD, she looked at me like she was possibly confused, possibly angry or most likely, probably envious. It was a real moment of clarity - my condition had brought on financial uncertainty, quality of life uncertainty, but at least I had every reason to believe I was going to be around in a year.

In a way, my visits to the infusion center have kept me grounded, grateful and optimistic.

denise
3:21 PM on Friday, April 12, 2013

Although I am also on subQ home self infusions, I have gone, and continue to go, to an infusion center for care. The nurses ARE all wonderful and have positively impacted my quality of life. However, one aspect of the article that I particularly related to was the uneasy feeling of not belonging (a sort of fraud as Rebecca called it). On more than one occasion a representative from our local cancer support group struck up a conversation with me and then clammed up and walked quickly away  when she asked me what type of cancer I had and I replied that I didn't have cancer. Not even an "oh, I see"...just a look of "why are you taking up space here then?". The patients are all fantastic people along with the nurses and infusion staff...but I guess support groups are pretty specific.

Rebecca Zook
7:31 AM on Monday, April 15, 2013

Thank you all for your responses! It was good to know that I'm not the only one who feels out of place at the infusion clinic and I'm happy that y'all could relate to my words. :^)

My next infusion is tomorrow and here's to hoping that it doesn't take 9 sticks like last time (which was highly unusual).

Lorene
10:06 AM on Monday, May 20, 2013

Rebecca, when I read your blog, it was like reading my story, too. It is almost exactly the same: IVIG every 3 weeks in an oncology/hematology infusion center - feeling guilty and grateful at the same time. After a year of difficult needlesticks, I had a Port-A-Cath placed. It has made a huge difference. Thank you for sharing your experiences.

Monica Johnson
11:56 AM on Sunday, July 05, 2015

Did anyone ever think that perhaps we are the ones that are the ones with the actual death sentence? Perhaps because we don't ever get to stop? Either because the chemotherapy works or it never does. We just have to keep going forever, We won't ever recover, we will only get worse or catch something, get cut or have something enter us from a cough or sneeze that makes us so ill that we can't fight it and we just die. Then it just over. I told my Internist once that I had at the age of 23 had uterine and cervical cancer and should I be told I had cancer again I would actually welcome that compared to this. This is so unpredictable and erratic that you can't even fight it, just can't really know what to fight really. Cancer we seem to know so much more about now than we do this disease and when I tell doctors what I have they look at me and cock their heads like I am speaking a language they don't know and don't want to so they just move on. Anyone else feel like they are on another planet by their selves and going to be there forever?

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