For as long as I can remember, my family has had the same nighttime routine. It was slightly different when my sisters and I were kids and we all lived at home, but the basic idea was the same. We eat dinner together as a family. We clean up (whoever didn’t cook dinner), and then we all troupe into the family room to watch TV. Sometimes, on the weekends, one of my sisters will make cookies. Sometimes, during the summer, we’ll take an after-dinner walk. Sometimes, if everyone is feeling particularly social, we’ll play a game. Mostly, we watch TV. Or, as the years have gone on, we multi-task with smart phones, iPads, Kindles, laptops, or crafts.
Recently, there has been a new addition to the routine. Sometime between TV show #1 and TV show #2, there’s the family activity of connecting Lindsey to her TPN bag. When I returned from Germany with my legs still swollen like tree trunks, barely able to walk, the doctors finally decided they needed to do something that would work about the 15 pounds of fluid that had been collecting in my body for months. Even the “quick fix” that was supposed to fix it didn’t make a difference.
So I was sent to get a PICC line (peripherally inserted central catheter–i’m looking more and more like a cancer patient every day). And I was sent an I.V. pole. And a bunch of boxes of gloves and alcohol pads and syringes. And a nurse to teach us how to use everything. And refrigerated I.V. bags full of a thick, white, slightly sweet-smelling liquid: TPN, or, “total parenteral nutrition.” Basically, this fluid infuses me over night with all the calories and proteins and other nutrients my body needs to function. Whatever else I can manage to eat during the day is “icing on the cake.” The protein in this bag is supposed to help my cells deal with the excess fluid in my body (which is there because there’s an imbalance of pressure in the veins in my liver due to all the tumors pressing on them). And the calories, eventually, will help me start gaining weight. Rather than legs like tree-trunks, now I have legs like saplings.
But back to the routine. It’s a fairly complicated procedure to connect the TPN, and it’s essential that everything be kept as clean as possible so as not to give me an infection. I can’t connect myself because I can’t reach the PICC on my arm, so it’s up to my family to connect me. In fact, I have moved home for the time being until I don’t need as much help anymore–more on that later. At the beginning I was stuck on “being a burden” to my family because of all the help I have been needing lately and all the time that the TPN takes (and the dedication–my sister is on permanent nighttime duty if it gets kinked or air in the line or the machine randomly starts making noise while i’m sleeping). But the more nights this has been going on, at the risk of putting words in my family’s mouth, I suspect they actually enjoy the TPN.
The other night I awoke from a nighttime TV nap to discover my family, gloved up and all wearing face masks, standing around the medical-supply table arguing animatedly about one of the steps in the TPN-insertion process. While they were arguing and I was fighting sleep, I remembered something my therapist has been telling me for years about being a burden on the people closest to me. People who care about me want to help, because they feel bad that I feel bad, but there’s not much they can do. My mother is constantly telling me, “I wish I had this instead of you.” My parents went to Germany with me to provide moral support, even though I was stuck up in the no-visitors-allowed ward most of the time we were there, and they were stuck in the hospital’s lobby. I felt bad I couldn’t see them, but they kept repeating, “We’re here to support you.”
The TPN is something tangible my parents and my sister can all do everyday to play an active roll in my recovery process. And it is already making me feel better after only two weeks. I can only hope that in two more weeks I feel even better. And two weeks after that? Maybe i’ll even have put on a few pounds. And more than that, it’s a departure from the no-interaction lifestyle that TVs and smart phones and iPads and Kindles promote nowadays. It forces everyone to talk to each other. If I could only stay awake for it.
I feel I should acknowledge here how amazing my support network is. Some people get cancer and lose their family and friends who can’t deal with it. My family is amazing. I couldn’t get through this without them.
i am a liver 
cheers to your family!
I don’t read cancer blogs as a rule. at fourth stage b/c, but seemingly healthy, i hesitate. but, i just wanted to tell you that, in the middle of all you’re going through, you’re also a writer, a good writer. clear-headed through what must be not only your illness, but jet lag! i really hope these next few weeks hold a turnaround for you. and, when you feel like it, write.
I, too, having stage IV cancer, but “seemingly healthy,” feel as you do, daleevans. But Lindsey IS an amazing writer, as you said. And I, too, am a writer and do not have the courage that she has to be as upfront with all these procedures, etc.
Lindsey,
Speaking from the caregiver’s side, I want to reassure you of how much we want to help our loved ones – friends and family alike. We feel helpless at many times as well and when we can provide even an inkling of help that provides tangible support, whether its making some “tea”, or rubbing one’s back, or going to the doctor’s and taking notes, we will jump at the opportunity because we love you.
Those who make you or anyone else out to feel like a burden are either selfish, not truly your friend/family, or are scared of their own mortality and need a therapist themselves.
So glad to hear that you have been feeling better! And you are so fortunate to have such love and support. Your family sounds wonderful! Here’s hoping you continue to feel better every day.
Hi Lindsey! Just a shout out for the PIC line experience. I’m not sure you’ll remember, but when you were my student right after Justin and I got married he had to have another surgery (because of his 1996 traumatic foot amputation in the USMC… continuing saga) and got a bone infection and ended up with a PIC line once he got out of isolation and came home. (Seriously… second honeymoon was at SD Navy Medical Center just a couple of weeks after the first honeymoon.) I won’t lie–it was a lot of work, but I never thought of it as a burden. I NEEDED to be able to help him in some way, and changing bandages and setting the alarm to wake up in the middle of the night to get the next IV bag of medicine out of the fridge drawer… doing all of that was my anchor. The more mundane things were important, too–getting something for him to read/eat/drink when he couldn’t do it himself, driving every where, doing all of the household chores… I am sure there were times when I sounded exasperated or just exhausted, and I am so sorry about that, but I’m human and what was I going to do? Just know, though, that looking back I do not regret a single time that I did something to help him instead of grading another paper, or planning another lesson, or reading another page, or doing whatever the equivalent of wasting time on Facebook was back then. (Watching Friends? Reading the newspaper on actual paper?)
I guess this is my long way of saying that your family is amazing (as I’ve always known) and that I am glad it sounds like you’re letting go of the idea of being a burden and embracing the idea of being a loving member of a loving family.
You hang in there! Much love.
Yes…you have an amazing family indeed!
Lindsey…thank you for sharing your story. I must admit that this one made me cry. I nearly did not open this one to read “on being a burden.”
As I may have shared with you, I was within hours of making sure that I never became a burden to others a year and a month ago, after my (original) doctor told me I would be dead by now. I’m glad to have found a new doctor with a different idea/approach. So, this post struck that first chord with me.
You also said something that also hit me hard: “Some people get cancer and lose their family and friends who can’t deal with it.” This has been my experience, as has been for many others before me. This has been the most difficult. But it has allowed room for others who ARE amazing, and who will step up to the plate. And it has allowed me to learn how to be gracious in acceptance of help.
Cancer sucks, pure and simple. But some amazing love and experiences can come from the walk down its path…for all of us (patient and caregiver).
I wish you strength and joy today (and every day), as we each take it one day at a time.
You are MY hero,
From your Fellow stage IV sister
First, you have a great attitude! Knowing that caring gives others something to do for you and can in a way be a gift to them is GOOD. Don Piper talks about this in his book 90 Minutes In Heaven. It’s really a fresh perspective that I appreciate. Re: TPN. I LOVE IT! Why, because it saves lives and makes us feel better. I had 3 PICC lines in 10 days due to an undiagnosed allergy to the line material (oh I got phlebitis like you wouldn’t believe!). That third line held for a good while until I got a line infection. When/if that happens they pull the line and hook you back up to peripheral IVs that run fluids and antibiotics. Then when you’re well enough, boom, another PICC. OK, so I’m assuming you’re on a CAD pump. You talked about a pole. Here’s a tip for more mobility: ask the people who mix your TPN bags to suck all the air out and give you a backpack for the bag & pump. Then you can kiss that dumb, in-the-way pole goodbye! I HATED that thing. The backpack was almost like a “teddybear” I kept in the bed with me (which was where I was most of the time, cuz I was nonambulatory). Well, OK, an annoying, wheezing teddybear with a bionic heart but still–better than a pole that falls over on shag carpet and yanks on your line. Also, you can reduce pump noise via the backpack and covering it with towels/covers. For line patency my heparin was a perk too. I don’t know about you, but I could taste it, and for me it tastes like White Chocolate Mousse frozen yogurt, so I actually looked forward to it! Hopefully you have one of those big plastic anchors stuck on your arm that keeps the line in place, and if you want to add extra protection to the site (or at least feel like you are anyway) you can cut the foot off of a man’s tube sock and pull it up your arm and over your site. I “couldn’t live” without mine. I can email you a picture if what I’m talking about isn’t entirely clear. I was on TPN for a different health situation, but it was a traumatic illness, it sucked (I was pregnant), and Christ walked me through it all. You’re in my prayers. Hang in there.
Lindsey unconditional love is an amazing gift. Allow the love and support of your beautiful family and friends to surround you and buoy you. When love is given unconditionally there is a reciprocity that uplifts all involved. May your heart sing knowing that you are loved…. and that you bring so much joy to all you touch through your words, your beautiful smile, and your spirit!
Thinking of you, Lindsey. Sending love and light to you and your family.
Sincerely,
Stephen Haney
I bet you are right about them enjoying it. So often I feel like I cannot help my friends in need. But that is a physical thing they can do to love on you. Lucky them, and lucky you to have them!
You are a wonderful person, and a great writer. Just making a blog like this gives others hope. You and others like you are a blessing, never a burden.