When it rains...

I don't really know how to start this, I suppose nobody really does given the subject, so I guess I'll start by saying that I now truly understand the depth and meaning of the phrase "I need a drink". Those of short attention spans who somehow survive here at TFP should ctrl+f and skip to the TLDR.

You guys probably recall the hernia thread.... 45 minute patch job on a small tear turns out to be a three hour "lucky you're still here" worse than we expected reconstruction job. The thing is nothing exists in a vacuum. So while I was unable to do anything starting in february my mother had to handle most of the physical work around the house, and then after the surgery shove me around to class in a wheelchair and do even more while I healed up. The thing is my mother is disabled, has an inflammatory genetic disorder (FMF), and at the time weighed about 90lbs. That was actually her wheelchair from when I was younger that I was riding in.

The sheer physical strain of all of this more or less destroyed her physically even though she hardly showed it because she wanted to see my graduation so badly. All we thought was that she'd really hurt her shoulder dislocating it briefly, just a bad sprain. Until the night after my commencement she winds up unable to hold her fork and knife and just about collapses in agony because she's not hiding it anymore. We take her to the emergency room right across the street from the restaurant and they decide to splint&sling her and do some X-rays which come up with some cracks and possible broken bones. Cue orthopedist who says it doesn't actually look like that except for one miniscule crack not worthy of a cast, but thinks the pain is odd and wants a CT scan and MRI to check the soft tissue and why her lymph nodes are swollen in that area.

The problem is that by this point my mother's been steadily getting sicker and sicker from what we thought was nothing but a stomach bug... after two weeks of eating maybe 1/5th of a cup of oatmeal a day and not even holding on to that from the runs I can't pour pedialyte down her to keep her hydrated so after enough pestering she finally agrees it's beyond our ability to handle at home and to check in to the hospital. Being the ever-optimizing nerd I am, I suggest as long as she's likely to be in the hospital for a week or so we go ahead and get the MRI/CT scans done. This brings back mixed news and here's where our readers with a bad case of TLDR can join in:

The bad news is that even with the motion artifacting from the pain spasms her scans came back clear. No torn rotator cuff, and no real shoulder injury at all... probably just an ugly sprain.

The worse news is that while they were looking at the pictures someone saw something else towards the edge of the frame and had to ask "Hey what's that in her lung?"

I think we all know the answer to that question... that was about two weeks ago and I still have trouble wrapping my head around it. The good news in all this is that after 23 years of fighting a hospital has finally seen my mother have a full on FMF flareup AND they've seen enough to agree that "just eat more" is not a viable answer. So for three weeks she's been getting Total Parenteral Nutrition in addition to whatever she can eat normally and we're making long term plans with a nutritionist to use both nasogastric feeding and non-dairy weightgain shakes to help her really boost her calorie and nutrition intake. This should really help fight the side effects of both FMF and colchicine.

And that according to everyone but one tosser that's going against all of the previous as well we caught cancer, which is not small-cell, so ridiculously early that it's practically an act of god.

We're looking at the possibility of radiation and chemo and an almost certainty of having a chunk of her lung removed... i know the medical facts but I've really got no idea what to expect or how this could play out. I know this was a bit of a wall of text, and that at TFP there's supposed to be a point of discussion, so I guess here what I'm asking is for advice on what to expect and thoughts on my situation from the general knowledge and in a lot of case far greater life experience of TFP.

 

I am sorry to hear of all that you are going through right now. I am sure you do have a lot of questions but there are so many factors related to staging of cancer and how it relates to the treatments, what kind of treatments, how long, how it is determined they should be continued or discontinued that I am not sure what information anyone is going to be able to provide. I know this particular website was quite appreciated by one of my coworkers as she was journeying through her breast cancer treatments. I could have some insight from the outside of the box but I think you may do better hearing from someone who is or has actually gone through these therapies.

You have a complicated situation with the frail condition your mother is in now. Weight loss will be a concern during chemo but not all patients experience much of that. There are far better anti-nausea medications these days which can curb that to some degree. Be thankful for being in touch with a nutritionist and be sure to ask a lot of questions about how to deal with chemo related side effects and try to keep her weight up. It can be hard to get insurance to cover nutritionists outside of a very small demographic of patient conditions, so take well advantage.

I work in Internal Medicine and Pediatrics (weird combination, I know) It has been over 10 years since I have worked directly in surgery or hematology/oncology and I would consider my knowledge now related to how things have changed to be quite low. My experience with these things now is more related to following up on the other conditions while a patient is undergoing therapy. I am also a nurse, not a physician. I just want to make it clear that I am by no means expert.

After your mother has the tumor removed, they will know better at how they are going to proceed. They will look at the lymph nodes and the cell changes outside of the margins of the actual tumor and that is how they come to stage the actual cancer. A person can have a relatively small tumor that can be stage higher than one would suspect based on how the cancer has affected adjacent tissues and lymph nodes. At that point the physicians will often meet in a group called a tumor board, discuss her condition and come up with a plan, along with other alternatives for the patient if they don't want to proceed with the recommendations.

Inquire about any studies she may be entered in. This dramatically reduces costs of treatment and the patient in return generally receives a really thorough level of care as well if they get this opportunity. Obviously not everyone qualifies but keep an open mind to it.

Everyone reacts differently, some people don't lose their hair, some do. Women generally do better when they see their hair loss in a short bob rather than long hair. Send her to a hair stylist, tell the stylist what's up. I know this seems a silly recommendation but it is a horrifying experience to find huge clumps on long hair falling out of one's head. Chemo varies, some people take a cocktail of different drugs, some people are on a therapy with just one medication. My cousins son at age 4 endured chemo with a triple cocktail of medications and would tell me that one made everything taste like pennies, one made his hair fall out and one made him throw up. It is favored to put in a direct line for chemo so that the patient doesn't have the problem of having to deal with deterioration of the vessels needed to deliver the treatment.

A round of chemo can vary, could be 3 days on 11 days off etc.. you will know more after speaking with an oncologist. Sometimes health providers also have other support services for chemo patients like transportation. I know at my place of work we offer transportation to and from our health facilities for our disabled and elderly patients at a very low cost. (it's like a maximum of $5 per day where I work, and we just use a taxi service for this)

Usually there is a little bit of a break between chemotherapy and radiation. Time to recoup a little and rest. Before radiation therapy is started often they give a small tattoo to mark the area to be treated. This consists of a couple of dots of ink, barely noticeable. In general radiation therapy is a daily ritual excluding weekends and holidays until it is completed. Most people just feel more tired, the skin tightens in the area of treatment, patients use aloe and moisturizers to keep the skin in good shape.

I don't know exactly what sort of information you were seeking, not sure if this is helpful. I can tell you from my personal history that I had a grandfather with a lung cancer who lived a long and full life after treatment. He has passed away now but of complications of dementia. I do not know what type of cancer that he had. Come to think of it, I know more cancer survivors than victims. I do think that nutritionist is really going to be key in helping her through this. Listen well, and usually they accept family members attendance as they know not only the patient prepares food.

 

The willing Donkey is the first to die.

 

Thanks guys, that's actually exactly the kind of advice I was hoping for. Just thoughts from an outside perspective or similar experiences on how I can better help her fight this and what I might expect.

Ayashe: We know it's squamous cell carcinoma, which from what I understand is in and of itself good news since small cell is supposed to be a lot more vicious. The major issue is that it's right up at the top of her lung, combined with the relentless agony her arm and shoulder are in she's basically a textbook case for a pancoast tumor which I'm praying isn't the case because they have a much lower 5 year rate. The bright side to that though is that it's proven her doctors are thinking, the surgeon actually hit the brakes and changed gears to radiation/chemo before surgery on his own because he said her symptoms didn't add up right.

She's also already got a PICC line which they'll likely use if they decide to do chemo, especially since her genetic condition (FMF) will violently attack anything more invasive they try to stick in her.

Rogue: Actually she's started booting me out with orders to go do things and take lots of pictures for her on the grounds that if I keep up cycling through working until exhaustion forces me to sleep it off for 12+ hours I'm going to wind up her roommate.

Crested: The first day we found out she told me her plan was to kill the cancer or take it down with her.

 

I am happy to hear that you found some good news in all of this. Really, be supportive. Listen to her cues. Sometimes she may want company, sometimes she just want to be alone. Let her decide things unless they are really illogical, then discuss your concerns with her providers. I hope she can gain some of her strength back here, it sounds like she has truly been put through the mill. It sounds like you have earned the honorary title of caregiver but don't hesitate to ask favors of helpful friends, retired family members, people that can help with even the smallest tasks such as shopping, giving her a ride somewhere etc. When you are physically tasked even the smallest things can really give a person a boost.

Another great resource: First Call for help

 

Determined. Its a fucking parasite isnt it. Cancer. Make her put her bloody feet up on occasion - and don't burn yourself out either. Easier said than done I should imagine. Celebrate small victories - its good for morale. I think a lot depends on determination.

://www.thetfp.com/threads/when-it-rains.3888/#ixzz1wwCGksCo​

 

Speaking of small victories she weighed in at 102lbs today, which is the highest she's been for quite some time. We're hoping continuing the TPN through the chemo/radiation regimen she's starting (carboplatin+paclitaxel) will at least hold her somewhat steady even if she stops gaining.

She's pretty out of it with the pain but kept mentioning multiple cancer types or locations but insisting they said she was stage 1 so I'm going to try and catch the oncologists to find out what exactly is going on in there.

 

Identify the beastie you need to fight - good idea. My grandad had lung cancer - so long ago now that the treatments would doubtless be considered barbaric as using leeches. He survived three months longer than they said he would. I think his diagnosis was late, and he was not a young man. There is so much more now to help. Your mum obviously has fight in her going by the first post. Good luck for today.

 

Well I spoke with her oncologist, one of them at least, and they're dead certain it's just the one 3x3.5cm tumor in the pancoast area invading that nerve up there (hence the relentless pain), which puts her at Stage 3 officially. From what I gather that means that best case scenario we're looking at around a 50% chance of her surviving.

The problem is convincing her to quit smoking, because also from what I gather she may as well just come home and die here if she's going to keep at it.

 

I can't give you any advice as I haven't had any experience with cancer in my family. But sending you some ((((((hugs))))))

 

Nicotine addiction has been compared to heroin and cocaine, many say that it is equally if not more addictive than either. If she is of the mindset that things are so bad at this point there is no point in bothering then you probably don't have much of a chance in changing her mind. If you can convince her to give it a try, I would recommend Chantix. I know a number of patients who have used it successfully but there are potential side effects as well. The patients that I know of who had to discontinue the drug did so because of irritability/behavior changes, vivid/disturbing dreams and constipation. Some of these patients were determined to continue despite the side effects, some reduced their doses by half and found enough benefit and some had to discontinue it completely. I don't know if this is an option for her with her current drug cocktail and other physical conditions but most patients I know who have used it have stated that it was a very painless and easy way to get off of tobacco.

Wellbutrin is another choice for some patients, I haven't found it to be nearly as effective for patients but some do find it helps take the edge off of their withdrawl symptoms. If she does attempt a trial with wellbutrin make sure she knows that any sudden discontinuation of the drug would very likely cause a severe but temporary depression. Many people make the mistake of cutting it out cold turkey without a good tapering regimen to find themselves in tears and not knowing why.

Quitplan is another option, they do have some free resources available to patients as well. Convincing her is probably your biggest battle. Try to keep it in mind that she isn't smoking out of selfishness, addiction is a medical/mental condition. I have no doubt that it is somewhat a source of anger for you, but try to maintain a healthy level of support for her regardless.

 

Chantix made her just about totally lose it. The thing is she insists she doesn't want to smoke, has no remaining call for the nicotine, and that it's emotional because all she does is "puff". Constantly. The problem is she's about as good at mind games and manipulation as a person can get, and has done the entire quitting song and dance before multiple times. She insists she is and all she needs is time, and just doesn't seem willing to accept that she has no more time.

 

I forgot to mention it earlier but there is a possible hope: She seems willing to give electronic cigarettes a try as long as it physically feels close enough for her.

 

I don't know for certain they are any more healthy but it seems reasonable to think that it would be healthier. She is losing control of a lot of things right now, even if it doesn't make sense to you, it is something you can't really force her into. If she really doesn't want/need to smoke, maybe she needs another activity to keep her busy? Of course she may just need the whole oral gratification thing, I knew a lady who quit smoking by exchanging them for plastic straws. She looked a little silly chewing on her straws but it got her through.

 

liquorice root. Shaped like a fag, she can chew on it - get the hand to mouth bit - plus it is good for the chest.

 

I'm sorry to hear what you're going through. Best of luck to you and your family. x

 

No thoughts or advise from me.
My apologies for giving you a bad time the other night.
I'm new here. I'm sorry. This whole situation sucks.
The bright side I can see... sounds like she's a fighter, having fought until after your graduation. That's always a good thing.

 

I just wanted to check on you. I hope that all is well with you and your Mother.

 

Well it got a little hectic. After about two months a case manager showed up and told her she was being sent off to Melbourne for a Long Term Care Facility and then disappeared, never spoke to either of us or any of her doctors. Took me another 40 hour day to sort it all out, and then right after that with pretty much no warning they discharged her. I had to take her home in a hospital gown we had such short notice, they took out her central line because we'd been told the wrong information and thought there was no way we could care for it at home, and basically the whole thing was a total cockup that took a week or two to sort out. At least since then things have stabilized. We've made headway on pain control and she's actually quite fond of E-Ciggarettes (apollo's are great)... but she's still scaring the hell out of me with the regulars.

The pain, the pill schedules, even the multi-hour chemo stays I can deal with. I've been responsible for her care in varying degrees literally my entire life... what nobody warned me about were the mood swings. It's just beyond exhausting to deal with the emotional side of things.