My Husband, My Life, My Love, My Family, My Cancer
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Wow thank you all for your very kind words and support.
Gumdoctor
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How is Grannax~~~ how is the power port. How are you feeling ??
GumDoctor~you are loved!!!
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Tuesday remove port , add new port, Wednesday, Day 1 cycle 2, Gem/Carb. Next Wednesday Day 2 cycle 1. Except for having three incisions in my chest, they do smart a little during first infusion. But, I'm not sick, I'm not hyper from reduced dose of Dexamethasone. Yay. So I'd say all its going well. Liver monsters Die. Gumdoctor's liver monsters DIE. 💞
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Candy, sorry to hear about your frustrating experience with your MO. The important part is your chemistry and relationship. If you don't feel comfortable or gel with the MO's communication style, then that is a problem. However, candidly, I agree with your MO on the seeing the specialist for the autoimmune issue. My DH is an MD/surgeon. I have learned there can be a large difference in quality of care between being treated for a certain ailment by a specialist versus someone who has treated/could treat that ailment but doesn't focus on it or do it often. You want the specialist treating your autoimmune disorder. Don't mess around with that. MO is not adequate to treat that. Also, I have had issues in my own MO experience with a non-specialist. I had DVT a year before early stage dx. As a result, my surgical oncologist referred me to the head of the cancer center - apparently, he had more experience in hematology issues. He was/is a world reknowned lung cancer doctor who treated a lot of BC. It was a nightmare. I really liked him personally but was not happy with my BC care. I noticed that he would never go off of the standard of care or conservative protocol. Never think outside the box. He was not experienced enough in BC to do that even though he treated many BC patients every year. It takes someone researching, treating and thinking about BC every day to do that. However, he was very much outside the box with lung cancer, his speciality, always trying cutting edge and/or novel treatments. When he left my cancer center to move onward and upward in his career, I was reassigned to one of the MOs who was a breast specialist. Huge difference. My new MO is less defensive when I push and question him because he is confident in his knowledge of BC. I feel like I have a partner in my care and we each bring ideas to the table. It is a great relationship but not a perfect one. I do push back and do not agree with everything he says. Sometimes we go with his recommendation and sometimes we go with mine. I have been annoyed by him and he has been annoyed by me. He rejected my idea of Y90 for 6 months before he came around and is now a big proponent. We had a disagreement about scans the first year or so of my mets dx. He wanted me to have CT plus bone scan while I wanted PET-CT scans. He told me they were hard to get through insurance and would not be approved. I said "Humor me. Let's give it a try to get it approved. If it is rejected, we can reconsider". I have never had a PET-CT denied. Every time I was due for a scan, he would try to convert me over to CT scans due to the insurance issue. Eventually, he came around. My point is - I don't think that what your MO said is necessarily the problem (from a substantive perspective looking at the MO's competency as an MO). However, if you don't feel comfortable engaging in back and forth or if your MO doesn't receive you well when you try to push a bit, then that disconnect is a problem and you may want to try another MO. Although I love my MO, I have a friend who sees him who doesn't gel well. He is an introvert and doesn't talk much but puts a ton of thought into one's treatment plan behind the scenes and bounces ideas off the other breast MOs (beyond just the weekly meetings where the MOs discuss the cases) and looks for novel treatments for me. I am okay with that. If I have questions, he will stay however long it takes and answer all of them. He also takes my DH's calls when my DH is worried about me on his cell phone on a regular basis. However, if I don't ask a lot of questions, the appointments are pretty short. I "get" introverts and have had a chance to see all the stuff he does behind the scenes. Other patients may not have the same experience/opportunity and may work better with a different MO.
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Candy, I hear your frustration and disappointment. IT sounds and feels like your care falls under no single umbrella but is parcelled out here and there and it leaves one feeling a little like no one is in charge. My personal belief is that often no one IS in charge and it comes down to the patient being their own advocate, their own squeaky wheel to mention things that you think ought to be mentioned, just so everyone is on the same page.
Aside from that, as JFL alluded to, there are doctor patient relationships that are uncomfortable and there are doctors you think are incompetent. These are not the same thing! I left a doctor because I truly felt the man was utterly uninterested in anything I was going through, to the point I would have called him negligent. This was not a difference in style, this was bad medical practices (in my opinion). I do realize that doctors are revolving doors for sick people and few of us get the time and in depth attention we need when the waiting room is full of people. So I would suggest to you what I suggest to my husband. Write a list. If your doc is brusk and on point then meet him where he lives and you yourself be brusk and on point. Come at it like a business transaction. Do this as a way to respect that he has limited time, is not a mind reader and is not naturally warm and fuzzy. In those circumstances your need to be warm and fuzzy and come at topics in a sideways manner goes right out the door. You have 15 minutes to get your point across - make it count!
Unfurl your list. And say something like. "I appreciate that you are a busy man with much to do. In which case I am not happy with the current state of my medication and I want it changed to way more valium and marijuana with a side of laughing gas and much less stuff that makes me puke. I also want a scan and I will not take no for an answer so whatever you have to do to make that happen I suggest you get on it and tell me right now what steps you are going to take to get this on the go. As well, these beige walls are really dull and if you don't get rid of those sad eyed clown paintings in the lobby I will report you to the board of surgeons and bad art critics. Do we understand each other?"
At least this gives your doc something solid to respond to rather than voicing concerns that are not clearly stated. It goes against the personal style of some people to be out there and to the point but sometimes, for the sake of your own health, you gotta go all business executive. I hope you and onc get it worked out because feeling that no one is watching out for you is very unsettling and leaves one bewildered and wondering what to do. Write a list! Hugs.
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Good Morning ladies~Lets face it. Doctors are a business plain and simple. We are our own managers. Sometimes I find within myself my mind goes blank and I just hear. You’re doing great. Keep it up. And that is all my mind registers. Everything else is noise. So I agree the list would be a good tool for everyone.
Good to see you JFL& Runor my beautiful friends.
Blueshine. Lynnwood?
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JFL and runor--- I appreciate you both and your thoughts, insight, and advise to me!!!!!!
Yes I agree that the specialist for the issue should be the one to handle it --BC with MO, autoimmune issues with rheumatologist. But when you research this autoimmune condition the research says that the specialist that handles it would be a rheumy, or a neurologist, or a hematologist. My MO is also a hematologist and she commented she has treated this syndrome in the past, but wanted the doc that initiated the blood work for diagnosing the condition to handle the treatment. She was upset that they ordered the tests and then said the MO would handle the treatment. I think it is a situation of hurt pride and attitudes between colleagues, not that she cannot handle the health issue. And it puts me- the patient- in the middle of their petty fight. And on the topic of time, I have been stable with the cancer thus far, thank God. But with the TIA in May and now this autoimmune thing I do have questions during my appt and my MO seems impatient with me asking questions. Maybe because they are not specifically about the cancer.
runor---YES. I feel parceled out. And I think that my body as a whole works as a whole. The autoimmune issue can affect the cancer and visa versa. That the rheumy can deliver treatment to his specialty and the MO can deliver treatment to her specialty but what if the treatments don't work well together and worsens the situation - worsens the cancer or the autoimmune issues. And I do worry about the competency of the rheumy. I have seen his notes of my office visits with him and there is inaccurate information In the notes. I have not seen the MO notes from those visits but I trust her more. ( I hope my assessment of her is accurate) I am a list person also. I write a list of things I want to cover on a post it note and have it in hand at my MO visits. She will glance at my note I am holding. I have thought before she is saying in her mind " Oh boy she has her list with her". My list is 1. __ 2.__ etc. Then I explain further about 1. 2. etc. I wonder if my explaining is where I am failing. That I don't communicate effectively what I am trying to say. And at yesterdays appt she shooed me out the door before I finished my list ( I had 4 items on the list ). So the last item was not even discussed. Oh well.
My main concern is how will the MO act when I progress with the cancer (her specialty). Will we have a good discussion on next treatment options and get all my questions answered or will I be shooed out at the end of the 15 minute appt. I posted on the Ibrance Thread specifically about this concern.
JFL I know you have had several treatment changes over the years. How is your MO when it is time to discuss changes in treatments.
And do I wait for that time to come and see how the MO reacts at that time.
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Candy, when I was first diagnosed and researched all the time, I brought several questions and ideas to my MO. She was polite but stressed that my first line treatment was proven to offer the most benefit. I’ve been stable and have grown comfortable trusting her to let me know if anything better becomes available and in return I keep most of our conversations relative to current treatment and test results. Since MDA is a very busy teaching hospital, I don’t spend much time in our appointments unless we need to. Trust wasn’t easy at first but I’ve found the balance between being proactive and being an easy patient.
No time to catch up now, enjoying a brew & view.
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illimae- I don't drink but the view with a cola would be nice. LOL. If there was nothing going on since last visit, I would totally understand. But I have been having health problems the last couple of months- TIA and this autoimmune issue, both of which is new. Hopefully the next couple of months will be quiet and my next MO visit can be a HI, Bye visit. Short and sweet.
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Since I'm a doc and treated patients for 31 years...I walk in with all my doctor questions with the likely answers penciled in. I know periodontics is not the same as oncolgy. But the process of evaluating, diagnosing and treating patients is the same in both fields.
This is a blessing and a curse all at the same time.
I function all the time with lists, even cleaning my house or working on my garden.
My current MO, Dr Angel, loves my lists because it guides our discussions.
Gumdoctor
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Gumdoctor- How ya doin girl. I have lists for everything too- what I need to get done at home, daily tasks, etc. I am extremely organized.
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Gumdoctor- Did you hear from your MO today?
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Candy - MO out of town. Her nurse called around 9am. We had a l-o-n-g talk. After yelling and crying and finally listening she convinced me this is the best decision. I don't necessarily agree...but I have to calm down and trust someone somewhere....
Dr Angel out of town...so who decided this yesterday...her Nurse Practitioner. I was even more livid than yesterday. Nurse today I love and trust. She assured Me MO would have made the same decision. We will discuss next Thursday and do treatment even if at reduced dose.
In the mean time I need to enjoy my off week without any side effects except this neuropathy...mild neuropathy by the way...
Additional NEWS THIS TIME GOOD NEWS FOR SURE....
THE ARMY FINALLY APPROVED MY EXTENSION FOR 90 DAYS.
...supposed to be 180 days but I will take this and run with it. Ok walk with it.
Someone messed up and my attorney is now "on the case." A modern Perry Mason, he called me with the news today. He called me from his own chemo infusion appt...Non-Hodgkin's lymphoma for the past 25 years. He is extremely dedicated and finally I have someone on my team who gives a darn.
Gumdoctor
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Gumdoctor, just WOW! What a story.
We saw my cancer agency pain doctor today and it is looking like surgical intervention sooner than later. My surgical pain doctor returns from his whole clinic's 2 week break on Tuesday and there be team discussion.
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Candy, sounds like the MO-rheumy situation is even more complicated with egos and emotions and politics of the various doctors! Awkward for you. Awful. My MO is good with new treatment discussions. I try to have a few treatment options lined up in my head while I am still on a treatment that is working and I have convos with him at this point as well. Unfortunately, my treatment options are growing more creative as I am running out of options. I want to give him some time to simmer on my thoughts and do additional research if needed and for us to get on the same page. Some treatments require advanced planning so I feel better being on top of that to avoid delays if possible. He does well when he has a chance to think and look into things first. He did stay a good 40 minutes one time when there were tons of questions from my DH and me and tough decisions to be made.
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Gumdoctor,
You are beautiful without Hair! I am not...funky shaped head...but I wore (and will wear again) my head covers because I am proud of what we have all done. We are fighters....each and every one of us. And I am not going down without a good fight! I know you aren’t either. So wear your wig, headcover, or nothing, and we stand proudly in support of you. May God send a special blessing your way today
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You are all lovely lovely friends and women. I adore you all. The support and love here cannot be matched. Each and every one of you!! Have a special day. My back is out again. Ugh! Doesn’t take much to irritate that area.. so in bed I’ll be!! Love to all ! ~M~
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booboo my sister actually said, "between the two of us, its lucky you're the one with cancer as you will look so much better bald"
(she is a good sister... it made us both laugh at the time)
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Gumdoctor- Woohoo on the Army issue !!!!!! Finally some good news. Try to "enjoy" this time away from the chemo.
JFL- How do patients do it that do not 'research' the next treatment??? I guess the doc says we are going to use ___ and they say ok. Scary.
Micmel- Sorry for the back issue. Not a fun way to spend the weekend.
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Hi everyone.
Gumdocter,
Yeah! You finally got some good news.
Micmel,
Sorry to hear your back went out. I hope you feel better. Have you tried CB D lotion? It helps with the inflammation.
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Marianelizabeth, I hope you get the pain under control. My thoughts are with you xx
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Santa,
I have a sister like that. We laugh about everything. Laughter really is a big key to not letting this disease get to us. I try to find something to laugh about every day.
Thanks for reminding me how lucky I am to have a sister like that
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Mel,
I have a really bad back too. Lower spine has tumors that press on the nerves. I’ve been feeling more pain than usual, so pretty sure Madam X is no longer working...we’ll see.
I hope you put your feet up and watch a good movie or one of your other shows.
Take care, my dear
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Hello friends, went swimming with the fishes today! The first pic is me in the background trying out my new flippers and we saw a turtle, so fun 😀
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Mae,
Wow. Awesome pics. I don’t know where this is, but the water sure looks clean. What a fun time that must be swimming with turtles! Enjoy
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Mae - this looks so gorgeous and peaceful. So happy you got to do this!!!
Gumdoctor
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Jealous...jealous... but awesome sooo awesome. Thanks for sharing the beauty.
💗Gumdoctor! Hello beautiful Minnie~ what's your weather like Hope your hip is treating you ok? You got that scooter still?? Candy~Hi there How are you this evening my back is toast am in muscle relaxer land!!! Howdeeee do!! Lo
Simone!!💗...welcome back grab a chair, let's have a cold one and live vicariously through Mae our reporting correspondent!
BooBoo! My girl. Yeah the back area where my little spot of cancer is. Geeze doesn't feel little at all. Feels big and painful honestly. Whine whine. Poor DH. Still downstairs in the kitchen. He made me short bread cookies for the week. While he's gone. His son is staying here with me until Wednesday. So that's special. Helps me not go bonkers. Hope all Is ok in your world!
Bigbhome~ where are you sweet woman! ???
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Hi Ladies, Micmel, we have over 90 every day. The heat bugs me so lie low apart from beach or boat. Had family visiting so just been dipping in and out here. Hope you are ok! Mae, love your swimming, I managed to do a bit of snorkelling with the grandsons. We saw little 🐟 but not a lot more 😂. My best to everyone, especially those changing treatments due to progression. My next CT is next week, so,not thinking about that until the day before xx
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Mel,
Any chance you’d loan out your DH? He sounds like an awesome guy. My DH doesn’t bake, but he’s pretty good on the grill and making his famous spaghetti sauce!
So glad your step-son is staying for a few days. I am much less focused on this crappy disease when I have people around. I hope he makes it a little easier on you when your DH leaves for the week.
Happy Sunday to all!
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