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I'm Just Here to Vent after Today's Onc. Visit (3-27)


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How in the world did that onc. think my mom was sound enough to resume chemo today (and still insistent, with no hesitation, on beginning radiation within the week)?

She has been out of hospital visit #2 for about 2 weeks now and isn't even over her pneumonia, let alone her continuing bouts with overwhelming fatigue, nausea, vomiting, and the "runs" from the Keflex (which didn't get improved near enough IMO from the Lomotil). She never did regain any strength of note from that blood transfusion. She's not eating like she used to and, despite the shakes, ice cream, pudding, etc., she doesn't seem to be intaking enough from what I can tell (but no one is weighing her lately or seems concerned about dehydration....I am!).

We did labs today, and the onc. walks in assuming that chemo will resume without telling us anything. Mom tells him about her symptoms pretty well, but he says well "did you come here to convince me you want to do chemo today or not to do chemo today?". I just tried to get enough info. out of him about her stability from a medical standpoint to find out if this was feasible so she could make her own decision. She, in the end, opted to go for it and I didn't argue (this s*cks big time 'cause I wanted her not to choose to continue today by her overall condition).

This was a really hard day for me, 'cause every bone in my body says she shouldn't do that yet ..... but all I could do is pull enough info. out so she could make her own decision (mind you, all of her oars aren't totally in the water either due to several disease process/treatment factors, but not so bad that she can't make her own decisions -- she just needs extra explaining and repetition of info. to insure she fully understands what is going on and I tried my best to do that). The onc. never did answer to any degree of specificity about what would happen if she waited to recover a bit more -- his vagueness in these matters drives me up the wall!!!!! Onc. did directly say that she was medically sound enough to continue, so I guess that has to be good enough for me too.

It wasn't until she was in today's chemo session that I found out they added a new drug to combat her high calcium levels (must have been from today's labs) -- want to keep the calcium in her bones.....well, what else was in those labs? (should I request a weekly copy????? I sure don't know how to interpret those things yet). She's starting another new drug under the assumption of C-diff until they can get a sample that says otherwise. Top that off with she tells me about her seeing flashes of light in her peripherial vision that look like beings to her lately (even before today) and me floating above her head........I am not liking this AT ALL.

We'll see what happens in the days ahead -- I am just beside myself right now with this development.

Thanks for listening.

Linda

(another edit P.S.) Her temp is running real low, like 93-94 degrees today -- "they say" it's the O2 that does that, but nooooooooo....not so in her history: she has been on this O2 since the beginning of all of this and it usually rides 96-97: why don't they re-check that sort of thing? I crawl the walls with stuff like that (cellular processing of the proteins we need stops below 97 degrees [and above about 101-102 degrees in adults FYI]). BP is something like 92/52 today and that's low for her over all of this time, but has happened from time to time since all of this started. They had all this before the onc. decides why not continue chemo....ugh!

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Good gravy!

I can absolutely feel your "frustration"--if that is a strong enough word.

I guess now that the decision has been made, all you can do is support your mom and monitor her progress very carefully. It seems like he was being very flippant in his comments. It would be a shame if this is how he treats her on a regular basis!

Feel free to vent here any time--it's what we are here for! Be sure to let us know how your mom is doing.

:) Kelly

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Linda,

Personally, I would look for a second opinion as soon as possible.Although I'm not a medical expert I just feel that this doctor is not monitoring your Mom enough. I've never heard of someone having chemo when they're in your Mom's condition. Considering that and her age I seriously would look for another doctor, one who isn't so short and will take the time to explain the situation in a direct and caring way. Please keep us posted and keep your chin up.

Joanie

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Just a quickie follow-up to Joanie's comment: where am I gonna' go? Mom is happy with her onc. right now and her treatment direction ...... what am I supposed to do on pursuing a second opinion when mom isn't inclined to do that?????? That's another part of this whole thing that is driving me nuts -- how on this "green Earth" am I supposed to override her in this???? That is just one of the major moral dilemmas I am in right now.

Linda

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Holy cow!!!! What a nightmare. It is so frusterating, as caregivers, always double checking everything. They give me a printout at every chemo visit with the lab results. I had to ask the 1st couple of times and now they just print one out. The nurse will even take the time to go over each number with us. Most of the time we feel rushed at the Oncologist's visit. My mom's radialogist oncologist, would usually take the time we needed, but we haven't been there since Feb. 15th. Good luck.

Hugs and Prayers

Connie

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I went back and re-read your post to make sure I caught everything. I can see how this could drive you crazy. Your Mom has made up her mind. It is her life, but there is something you can do. You can go ahead and investigate cancer centers and oncologists in Washington State. Also, I'm pretty sure there are people here who are being treated in that area. Try a Google search for oncologists. This way if your Mom changes her mind you are prepared to go ahead with the second opinion. Your Mom may undergo this chemo round and come to the conclusion that it may not be right for her. You can then offer her your alternative.

Dealing with this disease is awful and having a doctor who doesn't dispense information or do the run of the mill things doesn't make it easier. I feel for you. If you want to,post under the "General" forum to find anyone on this board in the state of Washington. They may be able to recommend a doctor or cancer center. Lots of luck to Mom and you.

Joanie

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It is very hard Linda. I mean, considering your mom is fighting this beast, you are right to support her. The oncologist knows that to stop the beast from growing, your mom needs chemo. It is one thing if he is not listening. If not, I would absolutely explore other options. Ask around. Then you can present to your mom that you have heard great things abot another Dr. OR just cal the oncologist's office and ask why he chose to go ahead with treatment. Make yourself heard, even if not right in front of your mom. Let the Dr. know that you are leading the way. Educate youself so that you know the options before you even get there. Write down questions and do not be afraid to ask them, in all of their entirety.

My mom still tells everyone that when her oncologist sees me coming, he thinks "Oh gosh I better be prepared for question city". My mom gets a kick out of it and tells everyone I am her patient advocate. I am proud of it, not ashamed. You care, so ask away. They would ask if it were their mother!!

Hang in there. Stand up and be heard. Look around.

You are doing a great job.

XOXOXOXO to you!

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OK, at least now I probably know why I am continually being brushed off at mom's visits.....been digging around for alternative docs. and centers this morning and looked at the site where we are currently going: I must be REALLY naive!

Site says family members can arrange independent consultations with the doctor for a per minute fee, billed directly to the family member requesting the consultation. I simply can't afford to do that in my personal circumstance and find it a real eye-opener. I am very disheartened. If there has to be a dollar sign attached to every question I have (and I am POA), even for what I find to be the basics in quality care...I give up, plain and simple, and I am just crying at what the medical system has been reduced to.

Linda

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I am so sorry for the difficult times you and your mom are dealing with right now. I have been the caretaker and the patient, so I know how awful both experiences can be/are.

Every time I get blood work, I receive a copy of the results. As your mom's POA, you can get a copy of all her medical records. You may be charged for them (I think it is $1.00 per page for the first 10 pages and then .25 a page after that, but I could be wrong). If you get these copies, you will have all the information you need to get a second opinion.

I know life is not easy for you right now. You are being such a good caregiver and daughter. Keep up the good work!!!

With a gentle hug,

Pam in FL

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DON'T GIVE UP!!! YOU CAN'T!! YOUR MOM NEEDS YOU.

Why don't you call the Dr. yourself and ask him WHY he made his decision. Maybe he will give you some insight as to his decision. Again, at least you will be making sure that he knows you are on the case!!

If you speak with him and still do not like him, then call around for another Dr. I am sure others have gotten sencond opinions, but I was never aware there was a fee.

Hang tough!

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Linda,

I as a patient am entitled to copies of All my medical records at no charge, I have already paid via, my insurance, so has your mom..

When I was doing chemo, I received a copy of my blood work every week. I also knew what my chemo was each week. I would ask the chemo nurse EVERY week what she was giving me (to confirm it was right, remember there are others there receiving chemo too.)I also knew the order my meds were being given (ie.. Premeds 1st, then Taxol, then Carboplatin) anything new, I would question and NOT let them give it to me until I had answers and felt in my mind it was OK, even while in the hospital. Woke up one night in hospital to a nurse putting a needle in my IV. I said what are you doing. She said giving you meds to slow your heart rate down, Never needed that kind of med before, she also was giving me med for clots, (had none, go figure) Hubby was with me every week during chemo, he would ask too, just to confirm)

No one is perfect and mistake proof. We all make mistakes, just trying to keep from being a medical mistake, not questioning their profession (sometimes we should or have to though.)

LINDA/LORI,

Keep up the good work, being advocates for your mom's. I am sure they are very proud of you two...

P.S. Chemo nurse ONE time did not give me premeds. When asked about it, she just laughed. Then all kinds of complaints came in from others and she left shortly there after, told to all of us by the doctor.

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Thank you for "the Hutch" info., Joanie. I am aware that Seattle has a few facilities with good reputations and I had previously begun researching Seattle prospects for possible future things such as Cyberknife if we ran into that as a possibility (got an info. file started) -- hopefully folks will respond to my general post with some specific docs and resources we should consider now. Honestly, though, with the way things are, Seattle isn't a short term option if we have to run up there and back frequently on our own....needs to have living facilities nearby for mom during treatment where she is monitored (she cannot be left alone in a hotel room, for example)....I cannot be there on a routine basis with everything else I have to manage around here ...(and I don't have enough support around here that can be left to manage those other issues in my absence)..that's another part of the puzzle I have to find/work out now as well.

Dear Lori: I'm not "giving up" giving up, but I am stopping my incessant "jumping" when anything says "boo"...some things I just have to let go of, whether I like it or not...I have to just choose wisely day by day as best I can....I can no longer immediately and aggressively chase everyone down for more answers (which I never got in the first place) when I have asked repeatedly during times assigned to deal with the issues at hand -- there is so much on my plate beyond mom's current illness advocacy needs (that mom also needs me to do to support her) that I just can't be everywhere and tending to everything as the world expects me to or as I'd like to in an ideal scenario.

The medical community expects the family to be able to bend to everything they need them to: I can't bend like that all the time in a system designed so poorly with all of my other current responsibilities -- I'll break if I keep this up at this pace and it's already showing in my life and personal health.....right now I am dry heaving just writing about this: it's stress with no "out" and I have to work a balance somewhere/somehow.

The doc. has already established with me that he is aloof to my advocacy attempts with him -- he may be the "best thing since peanut butter" when all is said and done for all I know, even though I am just plain not a happy camper right now. Mom seems satisfied and isn't up for second opinions (at least openly), so I'll collect the info. on alternatives so that mom can be armed with them when she wants them. I'll continue researching what the docs are doing on my own so I at least know when to really hunker down, dig in my heels, and red-flag mom and say "you really ought to do such-and-such, NOW." The research has already helped her when she has run across her side effects and she didn't have to worry about what was being proposed to her in treatment (like the blood transfusion) when I was able to educate her on an "as-needed basis" (that's how she wants it right now).

That's the best I can offer. I go home to a house that still has all of my dad's things right where he left them (he passed last year and I haven't wanted to just start disposing of things without mom's input...and now is not the time); I now have one of mom's horses not eating well...need the vet out here for that (and when can I know I'll be home to schedule that one to the nearest half-day to accomodate the vet's scheduling); on and on it goes and that isn't even the tip of the iceberg.

I'm tired and just have to set boundaries for myself so I am all "there" when I really, really need to be.

This got long......well, now off to see how mom is today after chemo yesterday and bring her some new PJs after my shopping trip for her yesterday after chemo., plus a few other advocacy administrative details.....

Linda

P.S. TY karen. I was posting while you were posting!

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Hi Linda;

my experience so far with Western Washington Oncology has been mostly positive. I had Dr Grfiffth for a while and now have Dr. Sui. They were both willing to listen to my suggestions. I told Dr sui I wanted to get a second opionion and he was very supportive . They made copys of all my medical records for me to take to the second opinion consulation. I went to Swedish Cancer Institute in Seattle this past week. I consulted with 3 docs in 2 days. One of them, a thoracic oncologist, said he was very impressed with the shop they keep at Western Wshington Onclology, which kind of surprised me. I was uncertain that Western Wa Onc had the expertise to handle complex cases.

I am sure that both Drs. Griffith and Dr Sui would be very forthcoming with any medical info if my spouse were to attend a consultation and ask.

I suspect that your mom has Dr. Lechner.

I hope your mom does well with the chemo and radiation.

I see that Saint Peter's has a small cancer center.

Don M

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Hi Linda

Just wanted to let you know I am thinking of you. I have been reading everyones posts to you. You got a lot of good advice.

I know how tired and worried you must be. You are alone in this. At least I had the support or my sister and brother during those trying times. My hat is off to you for all you are doing.

We are always here for you 24/7, you are not alone.

I am sorry for this tremendous load you are carrying on those beautiful shoulders of yours. I wish I could do something to help lighten it for you.

Your mom may feel fine after her chemo as it takes a couple of days to kick in, then she may have some flu like symptoms. That will pass in a few days.

Hang in there honey, you are doing everything you can. You are gathering information in case you need to go there.

Take care, prayers sent

Maryanne

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