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Candi

Occasional Relief

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Fantastic news.  Hope you feel better!!  I’m a physical therapist of all professions and hope to get back to my patients soon!!!  

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Hi Everyone,

I have a question that I just thought of that I don’t know who else I could ask but you all here.

Last night the pulmonologist on shift came in and all in all, said my CT scan showed improvement in all areas and explained some things to me, all positive and left me feeling pretty good overall.

Today, another oncologist from my oncologists office came in, said everything looked pretty good but she felt the steroids, antibiotics and chemo the other oncologist has me on was too much causing more harm than good, creating the reason I’m back in the hospital again but she assured me she would make changes and get me back on my feet and home. (I mentioned the going back to work discussion I had with the pulmonologist last night but she didn’t have an opinion on that).

Also today, the day shift pulmonologist came in and he completely bypassed my condition, got on one knee next to my bed and asked if I was prepared to let him and all others know my wishes for intubation should this hospital visit not go well. What???!!! This is a large, notable hospital with Dr’s on many levels with outstanding credentials. Why the conflicting messages and who do I listen to and answer? Of course I understand cancer doesn’t promise a future in all cases, I lost my dad 5 years ago, but how can these Dr’s from the same institution vary so much in their objectives and approach? I appreciate any feedback any of you may have if you’ve experienced this. I feel like a yo-yo. 😕 

Candi

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Hi Candi-

Been there done that!  I was inpatient with pneumonia when the biopsy was ordered. Next thing I know the hospital social worker was up with an advance directive form!   

I wonder if you are at a facility that is a National Cancer Institute?  A second opinion sounds like a good idea.  From my own experience, I felt so much better after the steroids were discontinued. 

I just finished reading Love, Medicine & Miracles by  Bernie Siegel MD.  It has some great tips on how to deal with your very experience.  The best news here is that you are large and in charge & get to decide what you are capable of.  

Hold on to hope!

Michelle

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Hi Michelle,

Thank you for validating my experience, I was beginning to think I was going crazy??

I am at a Cancer Institute, I’m gathering they are notorious for this? I would love to get a second opinion if I knew exactly how to do that? I will find out, you can bet that. I had thought about the steroids too because I have been on them so long but when they are even tapered I begin struggling to breathe because of the pneumonitis, so that part I’m not sure about? I’m also going to look into the book you mentioned, I’m not a good information seeker-outer but I need all of the information I can get. Thank you so much Michelle!! God Bless.

Candi

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P.S.

I did express my frustration to my nurse and she asked for details so I told her and she was appalled and said that was not acceptable and would be reporting them. She said they need to be consistent and on the same page with their patients so that made me feel a little better.

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It’s good you’re in a NCI.  You were smart to speak to the nurses.  They know how to manage feedback about the doctors. 

As for a second opinion, I’m sure this group might have a way to go about it.   I found out my employer had an Employee Assistance Program which had a Health Advocate to do the research for me.  I haven’t pulled the trigger yet & I’m glad the information is available if I need it.  

Hope you’re able to get some rest tonight.  

 

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So after the nurse brought the confusion of information to light, 2 of the drs have been back in apologizing for any confusion and basically saying to never give up but to be realistic and get my end of life care finalized, my condition (not cancer but scarring) has worsened.

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I’m not completely sure what they are trying to tell you Candi. I just wish you could get this figured out. 

Thinking of you and praying you get answers. 

Paula

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Good Morning Michelle,

Today is a new day and outside of allergy congestion I feel really good! Dr. said highly unlikely I will get to go home for Thanksgiving which made my son and I sad but I wanna be well so it’s a reasonable trade off. Thank you so much for asking, have a great day! :)

Candi

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Hi Michelle,

Good Morning! Well I’m still feeling fine, but unable to sit or stand without destating so I’m on my back in the hospital for over a week now. Frustrating. They tell me they believe it’s the scarring at the bottom of my lungs preventing the oxygen exchange so I’m not sure meds will ever resolve that? My big question now I suppose is now what? I understand the expected progression of the disease, but so far all else is completely normal with me, the cancer is even shrunk and stable. I’m finding it hard to believe I’m to just lay here but not sure what else is left to try. 

How are you doing? Where are you in your diagnosis and therapy? I’d love to hear about some or all of the applications you’ve used during this time. I found a pretty cool podcast I’ve been listening to https://itunes.apple.com/us/podcast/health-hope-inspiration-w-rev-percy-mccray/id1184981898?mt=2 

A lot of great testimonials on there. I hope you’re doing well and really appreciate hearing from you Michelle, take care.

Candi

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Just want to make a statement about the Advanced Directive.  They want you to have that in place, while you are healthy and well, so that they don't have to ask you about it when you are not healthy and well. From the time they discovered the nodule in my lung, at all of the tests, and every doctor's appointment that I went to, someone in the offices ask me about an Advanced Directive. I kept putting it off, and while they were prepping me for surgery they were asking me about it. I agree it is upsetting to think about it just before you are rolled into surgery. I should have done it way before all that. So that there aren't any misunderstandings, they want it done ahead of time. I am a month out from surgery and still not getting out and about, like I would like to, but as soon as I am functioning better and back to work, I am going to take care of this and have it in place for the future.

I went into surgery without one, thinking my son was next of kin and he knew what I wanted and didn't want.  But I have now decided that, that is a terrible burden to place on him and I need to have this taken care of. So I will do it. 

Good luck,  Candi, some things are just simply in God hands.  

My eldest son was in a car accident, I was told in the emergency room that it was very likely that he would not make it.  They were moving him to ICU and the doctor pulled my other son aside and told him to prepare for his expiring on the way up there.  For 30 days everything bad that could happen, happened, pneumonia, blood clots hitting his heart, kidneys shutting down, not producing healthy blood, on and on. The doctors always had factual news that was not good. Everyday it seemed there was something else that might kill him.  He was in hospital for 3 months, and when he left, the doctor said, " all I can say, is that we didn't do this, his survival was something way beyond what we did, or didn't do". It is 3 years later and he is asleep in the other room, and has been caring for me after my surgery.  So, I have seen God's miracles up close. 

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Hi Candi, 

I'm glad to hear the cancer is under control and I'm sure it's frustrating to be wondering when you'll be able to get out of bed.  Keep at it. I'm hoping the docs can come up with something! 

I'm doing okay.  I had an appointment with the onc today- he's pleased with my progress to date on alectinib.  My liver enzymes are a little wonky and we're working on dialing in to find the right dose.   I start acupuncture on Thursday and on Friday the meditation.  Will see how it goes.  

Hang in there and hold on to your hope!  

Michelle 

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Hi Candi, Do you have to be absolutely flat on your back? There are wheelchairs with an adjustible recline, to near flat and legs up. I had a client who had one  of them. It allows for easier breathing and for some mobility.

Bridget 

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Hello Pip,

Hallelujah what a testimony of your son!! I imagined however all of the emotions as a parent watching him cling to life.....it would definitely be one of the biggest challenges for me if it were my son. You made really great points about the Advanced Directive, I completed mine a couple of months ago. Similar to you, I wanted (I thought) to have my son more involved in the decision making as he may very well be present at the time of my passing, but soon realized I was asking far too much from him. He is accepting of the choices I have made so I am at peace with that. I pray your recovery is quick and you are back out in the work world in no time. Thank you again so very much for sharing here, yours was the encouragement I needed today! God Bless.

 

Hello Michelle,

I am hoping the docs can find a way to get me up also however, at this moment all they are telling me is that we need to wait. Waiting has never been one of my strengths so you can imagine my dilemma lol. I’ll be ok, just putting my thoughts out there in case there was something someone knew that I hadn’t heard yet. :) I’m happy to hear your oncologist appointment went well, my liver enzymes went crazy once and I guess it was because I had taken Tylenol. Hopefully the additional therapies work well for you,  they sound much more subtle than many of the treatments. Good luck and be sure to let us know how those work for you. God Bless.

 

Hello Bridget,

Yes I am pretty much flat with the exception of a slight incline to eat. Docs say they cannot do anything more so we are waiting and hoping the steroids will clear a little better path for breathing. I haven’t seen any wheel chairs like you speak of, I will definitely ask but am on high-flow oxygen 24/7 which isn’t mobile so I’m not sure how far it will get me but can’t hurt to ask! :) Thank you for the suggestion, I hope you’re doing well. God Bless 

Candi

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Hi Candi!

Checking in to see how you are feeling?  Any news on your end?  

This week my husband drove me to acupuncture for the first visit.  The Integrative Oncologist performs the service.  He asked me what I wanted to tell my body to do.  Naturally I responded, kill those cancer cells!  Well I am from NJ & I live in KS.  The onc said acupuncture is holistic and I needed to ask my body to heal.  Evidently my version was too violent.  It really felt great after the first session. It’s supposed to release endorphins to amp up your immune system.  I fell sound asleep.

I also went to mindful yoga where the ladies were all breast cancer survivors.  Now I know why there weren’t any LCs in the room.  The breathing excerises were tough for me to do.  I had sweat rolling down my forehead.  Ick!  Maybe next week I’ll try the plain old meditation.   

Hang in there!  

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Hi Michelle,

So nice to find your message waiting today, the last few days have been a little rough emotionally. I know we all have our crosses to bear with cancer so I try to keep any negativity to myself as to not squelch the hopes of others. 

The doc here states my lungs are worsening pretty fast. Not from the cancer remember but the pneumonitis caused by radiation/chemo is their deduction. It just makes me so sad that the scarring from the treatments in ways is more harsh than the actual disease as it will take me also as it has begun to.

I am still in the hospital, 3 weeks today and cannot get out of bed due to severe destating. I apologize for not having happier news to share, however I am so thankful for you and covet your prayers, thank you so much Michelle. I pray all is well for you at this time. God Bless.

Candi

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Candi,

I have the same feelings that the chemo and radiation was tougher on my body than the cancer. The surgery was most effective. I am not as battered as you are feeling. Are they teaching you deep belly breathing (youtube.com has short videos) or giving you anything to work on your breathing? My sister encourages me to do this daily to get the most out of my lungs. Sending prayers and hugs.

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Hi Laurel,

They have shown me breathing techniques more so to try to help to keep me from destating. I have 3 additional issues going on with my lungs so if one isn’t attacking me the others are. Thank you so much for your input and sharing your wisdom...I appreciate you Laurel, God Bless.

Candi

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Thank you Michelle, this morning something didn’t feel right. Not sure what, I was scared but it seems to have passed for now. I pray for peace the rest of the day. Xoxo

Candi

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