cancer is a four letter word

SoldierNurse22, BSN, RN · Mar 30, 2014

Much more than that...I've seen cancer win on many, many occasions. It's sad but it's a fact of life. For every success story, there's a sad one to match, and for many cancers, the sad stories outweigh the success stories.

annaotis · Mar 30, 2014

Working BMTU, I saw many patients that " beat it", but many who did not. I remember one particular 13 year old boy who developed GVHD- one of the worst cases I had ever seen. He ended up on a vent and his liver, among other things,was failing. His skin had turned a green color that I have never seen before or since. His eyes were yellow. He did not look human anymore. I remember thinking there was just no way he could come back from the state he was in. Yet, everyday he plugged away, nodding his head yes or no to our questions. Keeping his sense of humor through it all. We (nurses)would of course care for him, and love on him each day, and our hearts would be breaking on the inside. He went on like this for quite a while. He was not ready to give up until his "Mama" was ready to let him go. I did not realize this until after he passed away. I was there when she told him it was okay to go. He passed that same shift. Some patients try to "beat it" for the love of others.

KelRN215, BSN, RN · Mar 30, 2014

I've seen cancer win a lot. Even if it doesn't take the patient's life, it can still win. Brain tumors, in particular, can do that. Kids walk into the hospital with a few weeks of headache and ataxia and the next thing you know, they're trach'd, vented, G-tubed, incontinent and quadriplegic. And then they live like this for a few months and then they die. Or they live like this for years until they die of pneumonia or sepsis from a UTI.

Some cancers have a pretty good winning record. There's a pediatric brain tumor- diffuse intrinsic pontine glioma- that kills nearly 100% of the lives it encounters within 2 years. Pancreatic cancer, melanoma, liver cancers and malignant gliomas are all pretty good at killing adults.

To be honest, after working in this area for nearly 7 years, there are some diagnoses that I assume the worst from the get-go. If I hear "DIPG", "GBM", "AT/RT", "stage IV high risk neuroblastoma", "stage IV hepatoblastoma", "stage IV Ewing's sarcoma" or basically anything relapsed, I assume the outcome for my patient will not be good. As SoldierNurse said, it's a fact. Cancer is the 2nd leading cause of death in the USA... for adults. For children, it is the leading cause of disease-related death. (Accidents and suicide/homicide are before, depending on how the age groups are broken up.)

gvrn13 · Mar 30, 2014

Thank you for your stories. I don't doubt that this man will die from his cancer, I guess it's more a question of when, and when he says that he is done trying (if he ever does). I'm still new, so I'm still trying to figure out how to do my job, but not "feel" too much, so that I can't do it. It's just the color of his face, I don't think I'll ever forget that..

SoldierNurse22, BSN, RN · Mar 31, 2014

It's tough. There are some things you'll simply never forget.

I had a little lady with GVHD who had come through her BMT so well. She had almost zero problems until about 6 months after her BMT was complete and she developed severe GVHD of the skin, gut and liver. She and her husband were very close and she fought valiantly for well over 2 months. We bonded over a mutual love of cats and a similarly blunt, sarcastic sense of humor.

I was so excited to see her recover, both as her GVHD resolved and she was put on an antidepressant and returned to her "old self" per her husband. The day she was slated to d/c home, she was very upset and crying. She said she didn't feel ready. I tried to help her along as best I could and she discharged later that day.

Less than 2 weeks later, she was admitted to a nearby hospital with intense, severe recurring GVHD despite the medications and died less than 5 days after she was admitted. I think she probably knew she was dying, which is why she was so upset on the day of her discharge, despite her good prognosis from our docs. There are some things that you realize in retrospect that will forever haunt you.

workingharder · Apr 1, 2014

Many times when a diagnosis of cancer is given it is also a given that this is a death sentence. When I got my diagnosis I knew that one of my lesser problems was going to be financing my retirement.

With the op's patient, I can think of nothing so frightening as O2 starvation. With a cancer diagnosis you are already so beat up, the smallest routines are now Olympic events. I'm hardly an expert in oncology but, the first thing I would want from a caregiver would be the needed equipment at hand to take care of these situations. When he has his next scheduled exam, I'd like to be sure that there is O2 on the spot with whatever adapters as are needed. Does he do his own suctioning? Can someone else clean his cannula so he can rest? Can you just have a right sized spare on hand? I know when my sats crash, something as small as sitting up in bed can drop my numbers 7 or 8 points. And trust me, when I'm down in the low 80's I get damned scared. Nothing else frightens me anymore, but suffocation does. He may be as brave as you've painted him, and if so than i'd like to shake his hand someday in this or another world. But, oxygen starvation scares the hell out of me.

Make him as comfortable as possible. Don't let him get too cool in an over air conditioned building. Help him to rest as much as possible while in your care. Since my own diagnosis I've spent 11 of the past 58 days in the hospital. Sometimes we may not act like it but, you are now caring for some of the most physically vulnerable people you will meet.

OCNRN63, RN · Apr 4, 2014

I have cancer, and while I am still living, cancer has "won" in so many ways. I can't work anymore. I can't live independently anymore; I've had to move back in with my parents. I had to sell my car because I am not safe to drive. I've watched my parents lives become filled with worry when my tumor markers are off or when I get sick for a while. They should be enjoying their retirement. I try to just live one day at a time, but the worry about recurrence is always there. It's there now, because one of my markers is continuing to increase. Finances, retirement...ha! I was in good shape retirement-wise until I got my diagnosis.

So, yeah...in my case, cancer has won on many levels.

gvrn13 · Apr 5, 2014

I am so sorry to hear that both OCRN63 and Workingharder are battling cancer… what a truly horrible, and pervasive disease. There are a thousand ways to write how awful it is, and it really sucks that the cancer is winning and testing your strength. If you don't mind my asking, how do you stay positive, and not let it get the best of you?? I know that people, like many of my patients, can put on that front so that you think they are ok, and yeah!! they're going to kick cancers butt, but how do you get yourself to believe that?? Do you?? Is that the key to winning, never believing that it has you?? Sorry if some of these are too personal, and if you don't want to answer that is fine, this just seemed like the a frank conversation.

Well, my patient, the same man, arrived yesterday, and he was in the same good spirits. Thank goodness we did not have another clogged tracheostomy episode!!! I asked him and his wife, and they do have suction at home, but according to the wife, her husband, the pt is very stubborn, and won't use the suction, he just rinses out the cannula if he is having a problem. Not sure why he wouldn't use the suction. I asked my supervisor about suction in my facility, and no we do not have suction… no we do not have a crash cart, and if there was an emergency, it's 911…. comforting right????? The ambu bag does have an adapter that would fit the tracheostomy, so there's always that. Not so sure about where I'm working anymore. When I first started, I was so new that I was only seeing the task at hand, and now that I'm better at those tasks, I'm looking around, and I'm like really??? No suction (among other things)?? I'm going to watch my pt turn blue, and hope that 911 gets there in time??

workingharder · Apr 5, 2014

1st, I would have some genuine concerns about working in a facility that handles such fragile patients that won't even spring for a half-way decent crash cart. I can handle no defibrillator on board, but no suction? Come on, drop the $300 for a suction and sleep better at night.

2nd, See if you can arrange for a respiratory therapy consult with the patient on the proper use of suction. He may just not be educated properly on the benefits of suctioning technique. Proper suctioning can eliminate his auditioning for "Blue Man Group".

3rd, If he has an extra cannula at home have him bring it with him so that a quick swap can be done if needed in the clinic.

4th, get Social Services, either in house or state, involved with this man. They may not be able to help but, when they can it can be magical.

Now, on to my own approach to my situation. I had often wondered how I would react to news such as what I've been given. I am not a strong soul. Definitely not a type "A" personality. (Oh, and just as an aside, 93.74 percent of the world's problems are caused by type"A".)

I was handed the PET scan results and it was unequivocal, stage 4 lung cancer with Mets in vertebrate and liver. I can read and I knew enough about lung cancer to know my fate. And I think "fate" is how I view it. I don't carry any unrealistic expectations of medical science nor of the message delivered by the advertising community 're: the success rate for cancer cure. I have a 50 percent chance of living to the end of the year, a 40 percent chance of living an additional 2 years, and 1 percent to make 5 years.

There are times when I let it get to me and I'll wallow in "woe-is-me" for a few minutes but, generally I can't indulge myself like.that very long. It gets tiring and I've noticed other people don't want to play along most of the time. People are funny about that kind of stuff.

There are several things that help me make it through. I have a good, solid group of friends and family. I have a son who seems to view life and death in the same realistic way I do. Most of all, I have a brother and sister-in-law who have taken me in and have taken very good cafe of me. They are essentially my family and I am thankful for them every day.

(To be continued after my bathroom break)

workingharder · Apr 5, 2014

One of the things I do is be sure, to the best of my abilities, that my obligations are taken care of. My insurance stays covered, final arrangements are made and paid for. Advanced directives are complete, end status is established. When the time comes, I want everyone to be on the same page.

I did notice that with the stated exception of O2 starvation, I have no fear of anyone or anything now. Natural progresion of the phychology of the disease.

I don't think I'm afraid of dying. But, at this time its hard to say since its still a ways out there.

This is looking like its rambling some because, I've now been trapped in this hospital bed for 7 days, I'm trying to type this on a phone and my beloved Xanax is kicking in,

gvrn13 · Apr 5, 2014

workingharder, thank you for your insight and answering hard questions!!! I know life is a circle, we're born, we live, and we pass on, theres no way around it. I guess I don't know which is worse though, knowing or not knowing how you will go. I give you a tremendous amount of credit for being on top of all your affairs, and making sure things are done the way you want them. I also hope that you enjoy the Xanax, and get to go home soon. Hospitals stink!!

My work, is a doctors office, with an outpatient infusion facility. My patients come in, get their chemo, and go home. For the most part they are "healthy", and in my 8 months there I have seen about 3 chemo reactions, and my 1 pt who was turning blue. They really for the most part do well, and there isn't a lot of problems. But I can't stop thinking what if, and I'm really hating that I'm in a position where I feel uncomfortable with what I'm doing, or lack of doing, even just by being someplace where I wouldn't have the tools that I needed if I ever did need them, which I may not. I honestly have no idea why there is not a minimum standard.

When I see this man again, I will definitely ask him if he knows how to use the suction he has at home… he really may not!! I will also ask the wife about bringing a extra kit with her so if this happens again, we can just change it, instead of him having to wash the cannula out. I will also ask what kind of services, if any is he receiving. Thank you for all your ideas, and input. I really enjoy talking to other nurses, who make me think, and question, and want to be better for myself and my patients. :)