Mom Is Back In the Hospital

[Linda661]

Things have changed drastically since last Friday for mom and I am just beside myself dealing with this turn of events. First, the good news is that it looks like she finally beat C-diff woes after two repeat bouts with it (3 tests show negative now so that's good).

The bad news is she continues to have uncontrolled runs, she is so weak she is now pretty much bedridden, she quit eating solids over the weekend, she is significantly "wasting" in appearance, she is more confused than ever, she is dehydrated from how bad those runs got over the weekend, she appears to have fluid in her lungs, shortness of breath,.....anyway, a lot has changed.

We saw the onc. on Monday (two days ago). He said labs showed low sodium and high potassium. He discounted the potassium because the sample was hemolyzed (yet the lab had a good draw, they told me). Anyway, he ordered two days of hydration therapy to improve the sodium numbers and get her back on her feet. He also ordered a new med. to get the runs under control (the one she was on wasn't doing the trick). Radiation was cancelled for Monday too after I insisted that crew evaluate her condition as well (I swear they would have done it without hesitation, no matter how weak she was) -- mom's blood pressures were running lower than usual.

I got a copy of the labs and noticed that for the first time, numbers indicated that her kidneys were having some trouble (onc. didn't mention that one) -- lab info. indicated that to conclude that would be premature with one number. When I get mom back to the nursing home, one of her nurses takes me aside and tells me have I ever considered hospice, that mom is going downhill.....was more to that conversation, but hospice isn't something mom has been mentally ready for so far, so I have just been following her treatment wishes.....

So, anyway, I get a call at 2:30am on Tuesday from the nursing home: they are sending her to ER as she is having trouble breathing (O2 sats dropping). She was admitted by 9:00am on Tuesday morning and that's where I caught up to her yesterday -- been through this hospital stuff 3 times now and I know to collect and take my updated information on mom as staff never seems to have everything straight, no matter how much info. travels between offices!

She's getting IV hydration, she's on a heart monitor, and she's cathetarized when I get there. She can't answer their questions and doesn't even know why she's there when the doctor asks her questions during his evaluation. Her sodium numbers have improved from the hydration therapy that was done at the cancer center on Monday. Doctor doesn't know how long this stay will be.

The doctor took me aside and told me that kidneys may indeed be in trouble and that they may have to drain the fluid from her lungs.....too early to tell at that point. Potassium is high as well on their sample. The doctor even took me behind the nurses' station counter to show me their ER CT scan -- I was impressed that this doctor actually took that kind of time with me in the hospital.

I had quite a conversation with this doctor about our treatment course, what our understandings have been along the way, and I was able to answer his questions about head CT scans, test results to date, dates of treatment everything, etc. as I think he thinks she must be further along in this disease than our info. shows.

Now, so far, mom has wanted resuscitation/intubation....efforts made to save her along the way: this doctor says that is not called for. During this stay, this doctor is going to see to it that we are properly informed for where we are at -- I don't know what that means yet, but he doesn't think she's got a lot of time left.

So, to say the least, I am a bit shaky at the moment. I have a mom who may just get hit with a ton of bricks when reality sets in any day now: she is gonna' have to decide whether to continue on or do hospice and this is gonna' hurt her bad (she's not prepared for that from what I see).

I talked to my attorney yesterday to at least be sure that the doctor's can't turn to me for something like a DNR decision to override mom's wishes....thank goodness....this is so uncomfortable right now.

At least I know from here that things can be different in a week -- that this ride has up times and down times, so I haven't lost it completely. Just hanging on, day by day.

Linda

[Treebywater]

Oh Linda... I'm so sorry that things have changed so drastically in such a difficult way. You have done a superb job of advocating for your Mom... She's so blessed to have you by her side.

I will be praying for you both as your Mom finds out the details of where she is on the journey and as you both make the tough decisions that are coming.

((((hugs))))

[Kasey]

Oh Linda, we are hanging in there with you too. What a total dilemma for you right now.............for Mom too. It appears you continue to do everything possible to honor your Mother's wishes, as well as keep everyone on track. It is a fulltime jobe and in spite of how YOU feel, from my vantage point, you are handling it all well. We continue to be here for you...........to listen...........or whatever you need. Keeping you and Mom in prayer and hoping for some light at the end of this tunnel.

Kasey

[Ann]

Linda, I am so very sorry to hear that things aren't going so well right now. It sounds as if you have a doctor that is very frank and open with you. That is good, as long as he is willing to fight to save your mom. I have read several posts on this board from caregivers with a similar dilemma. I will be saying prayers for you and your mom.

[MsC1210]

Linda,

I am so sorry that things have taken this turn. Please know you and your mom are in my thoughts and prayers..

Hugs,

Chris

[Don Wood]

Linda, so sorry. Praying for improvement soon. Don

[Don M]

Linda, You and your mom have my prayers.

Don M

[hollyanne]

Linda -

I am terribly sorry that you all are facing these rapid changes. Prayers that you will be led to make the right decisions and that both of you will have the strength and peace to accept whatever comes your way...not too mention prayers that she improves.

Holly

[tatlyn]

it is a rollercoaster ride Linda and you're right, one day at a time...it's the only thing that can keep us sane I think. Many, many prayers coming your way that your Mom can rebound from this. God Bless.

Lynda

[tkelley]

prayers for better days ahead....

[RandyW]

Sending A TON OF PRAYERS for you folks. You have been through so much and have dealt with every obstacle in your way. I know how hard this is.I did not hav ethe info or knowledge to do as much as i thought I could do for Deb. You have been a pillar of support for your Mom. mat god continue to let you do that for your mom. Saying Prayers PM If I can help somehow.

[mamasbabygirl]

Linda,

I am sorry mom is in the hospital. It seems like you are doing all you can to keep her on track despite the roller coaster cancer has you stuck on. I hope that things turn around for your mom very quickly and that you two stay close through all of this. Prayers honey..

[Mskim]

I am praying for you and your mom.

Hugs,

Kim

[karen335]

Linda,

Just know we are all praying for you and mom...You are a special daughter.

Please keep us posted...

God Bless and hugs,

Karen

[Patty]

Sending lots of thoughts and prayers your way.

Patty

[ErinC1973]

Linda,

The sad fact is that chemotherapy is hard on the kidneys and a lot of chemo patients wind up on dialysis because of it. My mom, unfortunately, was on dialysis from end stage renal disease BEFORE she was diagnosed with lung cancer (had breast cancer in 1999 but only needed rads and a lumpectomy). So her oncologist had to be ULTRA careful of what chemotherapy to give her--high platinum concentration chemos were the only option, along with Tarceva/Iressa, which she used as a first-line, and it did no good. I see your mom was on Taxol/Carbo, which is a good combo for renal disease patients. The potassium thing is indication along with other things of kidney failure; we were taught there were three "no-no's" as a dialysis patient: sodium, potassuim and phosphorus. As a dialysis patient, she had to keep a very HIGH protein diet, but when you are trying to maintain what kidney function you have, LOW protein is best.

My mom had 17% kidney function when she started on dialysis in 2004, and maintained this throughout. Her nephrologist actually told her she may be able to have a "honeymoon period," where she would not need dialysis for a while, but would wind up on it again at some point. Her numbers were great and she oculd have gone off, but chose to stay on and just have her blood cleaned, not take any fluid off with each treatment. In all honesty, my mom was very sick for years, with extremely high blood pressure left out of control by her internist for years, which put stress on her kidneys, and she gained 40lbs in a short time. My mom was 4'10" and very petite, never weighed more than 99lbs at any one time and suddenly she was 147lbs. She literally ballooned up. Once she went on dialysis she felt a LOT better, was not so tired and was healthy...had it not been for the LC diagnosis in Novemeber of the same year.

I know it's scary, but the kidney issues need to be addressed, because if they can get these under control and there hasn't been any progression of the cancer, she could very well still be able to fight this. My mom was dialyzed 3x/wk and had chemo once a month for three straight days, where she would get chemo and then dialysis, so she would spend those three days out of the month hooked up to some machine ALL DAY AND NIGHT, but it gave us some real quality time together and she always felt good. ALWAYS. The biggest problem is that there are not a lot of studies out there about nephrology patients on chemotherapy, just about oncology patients whose kidneys fail and need dialysis afterwards. But these people do exist--my mom was living proof. She certainly educated her oncologists on the subject...and proved that these people need attention also.

I do hope with everything in me that this is just a bump in the road for your mom. It seems like you have all your bases covered and are taking all the right steps. Much luck to you--my prayers are with you and your mom.

[tnmynatt]

PRAYING!! Try to prepare yourself as best you can for good and bad days. The rollercoaster is a tough ride. Take care.

[Linda661]

I have a scheduled appointment to meet with the hospital onc. in mom's room this morning (and I'll also be there for the hospitalist visit) to see where we go from here. The onc. called me yesterday evening (I just missed him at the hospital after sitting there all day waiting, watching, listening to what's going on)-- this onc. is different from our usual one, but he works at the same cancer center and has made contact with mom's regular chemo and radiation docs.

I'll see what happens today: this onc. and I had a real good discussion on the phone and both of us agree that the course mom is on is too much for her and it's doing nothing to the tumour -- scans haven't changed since March, but now I have an essentially bedridden, confused, and miserable mom with no quality of life happening and a bit of desperation building in her. We are on a course to come up with a solid exit strategy from the hospital that includes what we can do about the treatment course -- I discussed with him the idea of changing the chemo since this one isn't working (mentioned drug names as I have learned of the options in here), etc.....we'll see how today's meeting goes there.

The onc. apparently told my mom gently yesterday that he thinks she needs to consider pallative-type care rather than "curative" route. I really don't know how mom is going to actually take this kind of news -- she has never really accepted her dx from the beginning and has rather coasted on my feedback and knowledge as we've dealt with the docs. along the way. And, quite frankly, I haven't had a patient with all of her oars firmly in the water since the beginning, even before chemo effects got going (that just has made things worse) -- no one believed me in the beginning about this, but it is being noticed as others are around her more over time.

She is beginning to not want treatment from what I see recently, but it's too early for me to say that for sure -- she yelled at the staff yesterday when they offered to transport her to her standing radiation appointment yesterday afternoon. We're getting more like emotional outbursts, rather than a clear sense of what she wants right now. She's getting really mad when everyone keeps asking her how she feels (including me) and if she notices any improvements from things -- well, none of us can help much when the patient is deceptive and uninformative on what's helping or not!

A lot of what she tells the docs./staff is falsehoods (like how much she's eating, weight loss, etc.); and she has told me many, many falsehoods along the way too -- I knew that was happening and I compensated for that with the truth to the docs in spite of how mad she gets at me for that (the docs probably think I am overbearing too when I do that, but too bad....can't help my mom if they don't know the facts). This is why I have spent so much time that I don't really have watching and observing what's going on.....so we can all really help on some truths. All her denial is catching up to her now and there isn't much I can do about that, except what I am already doing.

We'll see how today goes and take it from there.

One key question that you can help me with relates to wasting: the hospitalist has told me that once the wasting gets going, things don't look good and I really don't know how true that is or not. She looks like skin over bones (anorexic in appearance), yet her weight is in the ideal range for her and she doesn't appear to be retaining fluids in her body -- she's got no muscle visibly left either. I don't know if this is recoverable or not and info. like that is going to affect my input along the way with her. Anyone know anything about this -- is wasting a tx side effect that is reversible????

Linda

[RandyW]

This is my first Find And I think it will help you out 10 Page document For adobe reader but informative and credible

http://www.supportiveoncology.net/journ ... 103159.pdf

Personally everything happened so fast we did not hav etime to react. I know Deb was losing weight but did not realize how serious when I put my hand around her wrist after she had passed away.

[Carleen]

(((LINDA)))

Praying all goes well with your meeting with the onc.

I don't know anything about wasting as far as definitive proof that it is reversable.

I do know that my Keith has lost about 60 lbs since January. To me that is a lot of weight in a short period of time. He has lost so much muscle mass too. BUt then again he hasn't been able to be very active lately. However, about 3 weeks ago we addressed his appetite and options with his onc who gave him decadron (a steroid) which has helped with his appetite. He's eating much better now, and has even put 6 lbs back on. So, it is my belief and prayer that this is reversable.

[RandyW]

Cachexia is a progressive wasting syndrome characterized by

extensive loss of adipose tissue and skeletal muscle. It occurs in about

half of all cancer patients. While anorexia also may be present, the energy

deficit alone does not explain the pathogenesis of cachexia. The presence

of an acute phase response (APR) has been linked to accelerated

weight loss and a shortened survival time. The APR is thought to be initiated

by cytokines such as interleukin (IL)-6 and IL-8, production of which

is induced by a tumor factor, proteolysis inducing factor (PIF). Cachectic

cancer patients also show an increased expression of uncoupling protein-

3 in muscle, which may act as an energy sink, increasing energy expenditure.

Loss of adipose tissue appears to be due to an increase in degradation

of triglycerides, rather than a decrease in synthesis. One candidate

for this effect is a tumor lipid mobilizing factor, which stimulates lipolysis

directly through a cyclic AMP-mediated process via interaction with a

β3-adrenergic receptor. Loss of skeletal muscle arises from both a depression

in protein synthesis and an increase in protein degradation. The

major proteolytic pathway involved in intracellular protein breakdown

in cachectic muscle is the ATP-ubiquitin-dependent proteolytic pathway.

Both PIF and tumor necrosis factor-α, but not other cytokines, can induce

expression of the key regulatory components of this pathway.

Eicosapentaenoic acid, found in oily fish, effectively attenuates protein

degradation in cachectic muscle by inhibiting the increased proteasome

expression and can stabilize body weight in cachectic cancer patients.

[karen335]

Randy, very interesting. Wish it was in laymans terms a little more.

Thank you for sharing...

Karen

[RandyW]

This may be easier to understand Sorry that was a brief synopsis.

Cachexia is loss of weight, muscle wasting, fatigue, weakness and anorexia (not anorexia nervosa) in someone who is not actively trying to lose weight. It can be a sign of various underlying disorders; when a patient presents with cachexia, a doctor will generally consider the possibility of cancer, certain infectious diseases (e.g. tuberculosis) and some autoimmune disorders. Cachexia physically weakens patients to a state of immobility stemming from anorexia, asthenia, and anemia, and response to standard treatment is usually poor.

[Linda661]

This recent info. is explaining a lot. Mom's bloodwork has showed that she has been low on protein for some time (I have a one page history of labs now that go back quite a way). Mom wasn't always not eating solids so well, in fact that's really recent and she was consuming proteins along the way so I can't say that it was anorexia that caused the wasting -- sounds more like the underlying work of the cancer as Randy's reference article explains. She was walking and as active as she could be along the way as well....she just finally got so weak that she couldn't do it anymore, but we also had C-diff woes happening and a few other things going that seemed to explain the weakness. Quite frankly, she was complaining of weakness even before her dx (and doing less and less activity), but she thought it was from her arthritis and some back pain she was having over the year prior to dx. What confuses things is that she was on Omega 3 fatty acid supplements (fish oil) for years -- maybe that helped slow things down -- at least I got from your last post, Randy, that oily fish contains that acid compound that might help....not sure there: might not be the same or even found in a supplement.

And I have been thinking this was chemo side effects too, yet I have observed many patients at the cancer center who have been on chemo for a long time that are much more robust, alert, active, etc. than mom has been through this from day 1 -- what a mixed up, complicated mess to unscramble what the symptoms really are to help the patient!!!!!

Can't help but wonder if the docs. took such an aggressive route, not so much thinking cure, as desperation to reverse what they could, hoping that mom could rebound enough right now....they told her yesterday that she has already beaten the odds of their thoughts at initial dx -- obviously I missed that connection in December and as tx got underway. And I was told yesterday that the radiation doc. was even considering double dose radiation soon (news to me)....they have been working against the clock.

Not sure what I sound like here, but what I am saying is not meant to be a downer -- I've got a difficult case on my hands and I think I should eat my words of some (not all) of my frustrations with these docs to some degree.....as I put the pieces together, they really were/are doing their best (and I say that after, of course, I had already checked out credentials and such thoroughly too along the way).

OK, here's what I am gonna do today (we are likely to be discharged today with a followup appointment scheduled about a week out with our usual onc.):

1. Ask for a second opinion on mom's case. While I don't think these docs are steering us wrong with everything they see in front of them at the moment, I have some new info. from here that might help....we need regroup time and a review of mom's case now. Probably gonna' suggest DonM's contact.

2. Got to find out about hospice -- someone said that not all hospice orgs. are created equal.....if mom can have one that allows treatment options that would be great. Mom needs that kind of extra support right now, but I don't want an organization that just assumes it's the end.....as we all know, things can change....I'd like the docs. to help me with that one, if not at hospital, then the regular onc.

3. Get a list of possibilities of future treatment from the hospital onc., if mom should rebound enough to do further treatment....bring up Tarceva and Avastin (pill form rather than IV at the center is best for mom right now) -- then I can put more research time into what he says before followup appoint.

4. Show doc. the wasting info. May be something we can do to actually help mom rebound.

Sorry so long....I actually sort of dumped my head here -- gonna' print this out to take with me today when I meet with the docs. again so I can keep my head on straight. Too many tears pop up since yesterday and I don't want to drop the ball with important questions that need addressed before discharge.

Linda

[karen335]

Linda,

Sounds like you are on top of everything. Good job!!! One thing is you need to take care of yourself too. Get some rest and make sure you are eating properly. If you let your body get run down, you are suceptable of getting sick. Then who would take care of you ???

Try and have a good Memorial Day and get some rest. Sounds like your mom is doing better.

You are in my thoughts and prayers...

God Bless and hugs from a mom,

Karen