Newly diagnosed - NSCLC - questions about surgical options

[ChiMama]

11 hours ago, Tom Galli said:

ChiMama,

OK it sounds like your hospital experience sucks. We ARE your advocates. Lets deal with the congestion first. You need to get up, out of bed, to get things opened up. Are you lapping the ward? Ensure your bed is elevated to make it easier to cough and do keep working the spirometer. Elevating, walking and using the spirometer will get productive coughing started and clear things up.

You've just had a major surgery. You are not a drama queen; you've been hit by medical trauma! I've been there and I know what it feels like. But, I've also gone through the recovery process. Let's get the gunk out, then try and walk the ward as much as you can. It is so important to be out of bed, even if it is to go to a chair and sit up.

Stay the course.

Tom

Thank you Tom, I'm home and a little better now. The gunk is better too. I've been resting elevated since the biopsy, practicing for after the surgery. 🙂  Been trying to do the spirometer but can't get much higher than 1000, I just keep at it as best I can. Is there a line or goal it should be at?

I'm walking as much as I can... at the hospital there was rarely anyone who could escort me so I didn't do as much as I intended to.  Maybe 3 times a day 2 or 3 laps is all they would do.  When I had my colon surgery I was relentless in my walking!  Last night and today, when there wasn't anyone available, I walked back and forth in my room, and sat in the chair the rest of the time. The main nurse today was very nice, as nice and kind as the rest of them put together, so she was a good one to have on the last day. Was discharged about 1:00.  It's better to be home where I can walk around the house and feel good about where I am.

Now I have some heart palpitations, intermittently.  I called the doctor's office and left a message about it not realizing it's Friday so they may not pick up messages until Monday.  If it gets bad I'll go to the ER but so far it's relatively minor and random.  I filled the tramadol prescription but declined the oxycodone... and probably won't take the tramadol either.  So far today ibuprofen has been enough.  My left side under the breast where the chest tube was is numb - I think that may be normal?

My family is super supportive but since they couldn't be there it was very challenging for them too. It would be so much better if they allowed a family member to come in to sit with you, help you walk, speak up when you need something.  They could test them at the same time as the patient, then require they self-isolate at all times they're not at the hospital.

Thanks for letting me share here.

[Mamma Om]

Hello again, ChiMama. Try to be easier on yourself. You've been through a real trauma, and you are doing very well. I also had a surgery during this pandemic craziness and it was awful. I will note here that I have had 26 surgeries, most within the last 20 years, and I had my lung cancer surgery 2 years ago. This one in May was so different! I was alone, too. They only let my daughter come with me as far as the registration desk. I only stayed overnight but I was alone in the room, and there was very little traffic in and out, of nurses, doctors, cleaners, dietary. or anyone. I also found the nurses to be cranky, short-tempered, and overworked, a total change from my usual experience at this hospital. If this had been my lung cancer surgery I don't know if I would have made it. At the very least I would have been weepy, discouraged, and disappointed. So, go easy on yourself. Now that you're home, you and your family can take better care of you. Don't worry about a certain number on the spirometer, just keep doing it and your lungs will get better. Keep moving and walking, but also let your body rest and heal in between. I had the right lower lobe removed, was already diagnosed with COPD, and asthma. I was 75 years old and in the hospital for 5 days. Two years later, I walk two miles a day with my dog, morning and evening. I climbed 2 flights of stairs yesterday at the medical clinic to avoid crowded elevators. I live alone and take care of myself, house, car, and dog. Take care and you will see improvement day to day. 

[Tom Galli]

ChiMama,

I recall "heart palpitations" after each of my thoracic surgeries and reported the condition to my surgeon. He said give it a week to 10 days. Explained my pre-op EKG showed nothing of concern and categorized the palpitations as something that would stop as I got further into recovery.  He was right.

Numbness at the chest tube site; yes I recall that problem. It cleared about 3 weeks after my surgery. I had oxycontin and tramadol. Oxycontin gave me an itching sensation so I only took one. I did use tramadol after my third surgery because the resection of my right pictorial muscle and removal of two ribs really caused a great deal of pain. My doctor told me that I should have no concern about taking narcotic pain medications as long as I was experiencing break through pain. The addictive problem happens when the meds are taken when you don't have pain. While in surgical recovery (recoveries) I had muscle cramps and when in the abdominal area, it would really amp up the pain in my incision site. That is when I used the tramadol.

Keep active and walking around. There is no target number on the spirometer. What level you move the ball to doesn't matter as much as moving the ball and trying to keep it elevated for a couple of seconds.

Stay the course.

Tom

[ChiMama]

On 7/17/2020 at 8:29 AM, Scruboak said:

Chi Mama, you’ll be home soon and you will be more grounded. I had a lower left lobectomy via VATS a couple of months ago - most of my care providers were awesome but there was that ONE nurse who had little compassion or validation. We are such at their mercy while hospitalized.  Give yourself some healing time.

Thank you for this, I do feel much better now that I'm home. I miss my dog but I feel safer and calmer here. (My dog is staying with my mom while I recover - she's a great emotional help but she's too enthusiastic & tends to jump on me and she's too heavy for me to pick up right now.

[ChiMama]

4 hours ago, Mamma Om said:

Hello again, ChiMama. Try to be easier on yourself. You've been through a real trauma, and you are doing very well. I also had a surgery during this pandemic craziness and it was awful. I will note here that I have had 26 surgeries, most within the last 20 years, and I had my lung cancer surgery 2 years ago. This one in May was so different! I was alone, too. They only let my daughter come with me as far as the registration desk. I only stayed overnight but I was alone in the room, and there was very little traffic in and out, of nurses, doctors, cleaners, dietary. or anyone. I also found the nurses to be cranky, short-tempered, and overworked, a total change from my usual experience at this hospital. If this had been my lung cancer surgery I don't know if I would have made it. At the very least I would have been weepy, discouraged, and disappointed. So, go easy on yourself. Now that you're home, you and your family can take better care of you. Don't worry about a certain number on the spirometer, just keep doing it and your lungs will get better. Keep moving and walking, but also let your body rest and heal in between. I had the right lower lobe removed, was already diagnosed with COPD, and asthma. I was 75 years old and in the hospital for 5 days. Two years later, I walk two miles a day with my dog, morning and evening. I climbed 2 flights of stairs yesterday at the medical clinic to avoid crowded elevators. I live alone and take care of myself, house, car, and dog. Take care and you will see improvement day to day. 

Thank you. My previous surgery was at a different hospital, different system entirely. I had the biopsy at the other system at a small boutique hospital, spent the night because of the collapsed lung, and my experience was great.  It was shocking how inattentive and dismissive these people were. I asked if they were busier than usual and they said they weren't, so... I can only hope they aren't always like this. The last RN I had was super nice and kind, though - when I commented on how nice she was she said it's important to be nice when people aren't feeling well, as the staff attitude makes a big difference, and especially now with all the other things going on and COVID fears, etc.

My mother and sister picked me up and brought me home yesterday. They stayed for a little while but I'm so paranoid about germs right now that I really don't want anyone in the house with their outside clothes on, knowing they've been to stores etc. They wear masks all the time when out but still...

Thanks for the encouragement and hope, I was feeling so down yesterday! Still wobbly but getting more even after a decent night's rest and being home.

[ChiMama]

1 hour ago, Tom Galli said:

ChiMama,

I recall "heart palpitations" after each of my thoracic surgeries and reported the condition to my surgeon. He said give it a week to 10 days. Explained my pre-op EKG showed nothing of concern and categorized the palpitations as something that would stop as I got further into recovery.  He was right.

Numbness at the chest tube site; yes I recall that problem. It cleared about 3 weeks after my surgery. I had oxycontin and tramadol. Oxycontin gave me an itching sensation so I only took one. I did use tramadol after my third surgery because the resection of my right pictorial muscle and removal of two ribs really caused a great deal of pain. My doctor told me that I should have no concern about taking narcotic pain medications as long as I was experiencing break through pain. The addictive problem happens when the meds are taken when you don't have pain. While in surgical recovery (recoveries) I had muscle cramps and when in the abdominal area, it would really amp up the pain in my incision site. That is when I used the tramadol.

Keep active and walking around. There is no target number on the spirometer. What level you move the ball to doesn't matter as much as moving the ball and trying to keep it elevated for a couple of seconds.

Stay the course.

Tom

OK Thanks. I made the mistake of googling "heart palpitations after lobectomy" and found a bunch of info that scared the heck out of me!  (I know I know, stay away from Dr Google!)  It's still relatively minor and random.

Yesterday, the doctor said I am doing really well, even though I told him I felt like I wasn't. He said there were no complications, the incisions look good, I'm basically healthy so he has high expectations for my complete recovery.

I only took tylenol last night, and again at 4AM when the pain came back. No tramadol or oxy. I've had itchy skin the past few days, maybe it was from the meds? Had no idea that was a side effect!

I've been walking around the house, counting my steps.

[BridgetO]

hi ChiMama,

It sounds like you're doing OK. I was sorry to hear about your unpleasant hospital experiences. Have you considered complaining to the hospital administration?  . Surgery is traumatic under even good circumstances.Hang in there!  I'll wager that things will get better for you by the day, but don't be surprised if you have a down day from time to time.

Bridget O

[LouT]

ChiMama,

I'm so sorry I haven't been around, I had a family situation and couldn't get on the forum.  I'm glad your surgery is over and that you are home.  Tom is giving you good counsel.  I had palpitations after my surgery and an elevated heart rate.  My normal resting pulse was about 65, but after surgery it was 80 or even more.  Some of that (and the palpitations) are your body's reaction to the pain from the surgery.  It will diminish over time as your parasympathetic system calms down again (major surgery is tough on the body).  Don't worry about what goal to set for your spirometer, just do what you can and then every few days increase it a little at a time.  You'll see that you will improve over time so take your time, no pressure, just do it many times a day.  

Regarding pain, I would recommend that you use the Tramadol when you have pain.  If you don't like that you can ask your doctor for a combination of Tylenol and Advil it worked wonders for me.  I was taking 600mg of Advil and 1000 Tylenol three times a day and it was more effective than hydrocodone and without the addictive potential.  But DO NOT TAKE IT UNTIL YOU SPEAK WITH YOUR DOCTOR.  The doctor can best determine what dosages you can use safely (remember, I'm 6'2" and 185 lbs).  Having less pain will help you to exercise more, breathe more deeply and let you rest more completely.  Don't be a "pain hero".  Speak with your doctor and find the combination you are both comfortable with.

Keep moving...just walk around, slowly at first, breathing deeply and exhaling completely...you can always increase speed and intensity over time, but the moving and breathing is what you need right now.

Continue to eat well and drink plenty of water, your body needs that to continue to heal faster.  Find some time to relax as well.  For my part I watched comedies so that I could get my mood lifted and it worked well for me, but whatever you enjoy will be right for you.  When you're not exercising try to breathe deeply, slowly and then exhale slowly (don't hyperventilate).  It's actually a very healthy way to breathe and will do a lot to help you keep your O2 levels high, which is good for your health.

You've got this my friend.  Ask any other questions and as Tom said, "we're your advocates".  Contact your doctor about the meds (you need to stay as pain-free as possible) and anything else you have questions on.  BTW, there is something call a Surgical Physician's Assistant and they do support the surgeon, but I'm of the firm belief that your doctor was overseeing the surgical team.  Stay elevated, rest often, exercise often, eat well, laugh often, enjoy anything you can...and please keep us updated on your progress.  Your in my prayers.

Lou

[ChiMama]

15 hours ago, LouT said:

You've got this my friend.

Lou

Thanks Lou

I'm hanging in there. This is harder than I expected. Last night and today have been very challenging... I'm lethargic and have no energy. Try to do my walks but only make it around the house once or twice before I feel like I just can't anymore. The palpitations have gotten a little better. When I recline I have a weird clicking sound in my chest. Doing the spirometer maybe 5 times until I can't do it again, then have another go in maybe 15 minutes. I feel like I've regressed instead of progressed.

My digestive system is slowed to nothing from the anesthetic. In the hospital they gave me MiraLax every day (which didn't work) and when I got home I started Magnesium Citrate and Vitamin C. So last night I was still all bloated but some tiny amounts started coming out, same with today. (Sorry for the TMI!!!) So I've had basically no movement there since a week ago...  It's more painful than the incision area! And of course I have no appetite & have to force myself to even drink water.

Only taking the tylenol so far.

 

[LouT]

ChiMama,

When I first came home I would walk a few minutes then lay down and sleep for a half hour.  Over time that walks were longer and the naps shorter.  Give yourself some grace, you're doing a great job.  You don't need to push yourself so hard.  Doing the Spirometer 5 times is excellent...I used to do it 4 times about 5 or 6 times an hour...later I moved it to every 15 minutes so, you're also doing well there.  I can understand the constipation...that is not an uncommon situation.  If you're having trouble eating right now why not buy some Ensure.  Get a flavor you like; my favorite is chocolate.  That can help you with nutrition and give you fluids at the same time...and it can be tasty.  

Rest as much as your body needs, it's okay as you are healing and that uses energy.  You are going to get through this and look back on it as a distant memory.  Stay strong.

Lou

[ChiMama]

2 hours ago, LouT said:

ChiMama,

When I first came home I would walk a few minutes then lay down and sleep for a half hour.  Over time that walks were longer and the naps shorter.  Give yourself some grace, you're doing a great job.  You don't need to push yourself so hard.  Doing the Spirometer 5 times is excellent...I used to do it 4 times about 5 or 6 times an hour...later I moved it to every 15 minutes so, you're also doing well there.  I can understand the constipation...that is not an uncommon situation.  If you're having trouble eating right now why not buy some Ensure.  Get a flavor you like; my favorite is chocolate.  That can help you with nutrition and give you fluids at the same time...and it can be tasty.  

Rest as much as your body needs, it's okay as you are healing and that uses energy.  You are going to get through this and look back on it as a distant memory.  Stay strong.

Lou

Thank you 💜

[ChiMama]

Update: Sunday I was super Tired & a little dizzy, and about 5:30pm the heart palpitations started full force and nonstop, avg 155-175 BPM, lowest 112, heart flipping around so much I felt my whole body jittering like a bumpy car ride.  Plus some crackling/popping when I breathed a certain way.  So after 2 hours of this non stop I decided to go to ER to get checked.  They did Xray, ct, bloodwork showed hypopneumothorax & a d-dimer count of .86 (high) so they were concerned about blood clot.

They consulted with the on call thoracic with my doctor’s group and decided to transport me to the hospital where I had the surgery... next morning (Yesterday) they put in a chest tube and now I’m here. There was a little fluid leak and air leak.

Dr just came by checked & said no leak now so they’re going to pull the tube and send me home.

[LUNGevityKristin]

Glad you are doing better and headed home!  Keep us updated on how you are feeling.

[ChiMama]

Still in hospital, going home later though. This chest tube was placed up high in front and when she removed it I’m sure my screaming could be heard in the next state.  The removals of the previous 3 tubes was a very weird & uncomfortable sensation but not super painful like this one!!!  The dr staff was pushing to get me out ASAP but I haven’t felt well enough yet

Vitals are good, minimal palpitations (that aren’t registering on their monitors). Having some lightheadedness and they’re worried I’m still constipated in spite of multiple interventions in that area. 
 

I just did 3 laps walking (shuffling) around the halls. Waiting for nurse to give suppository 😳 then that waiting process then probably home in the early evening.

Yikes What a ride!
 

 

[LouT]

ChiMama,

Wow, you've really had a rough time of it, haven't you.  Right now it seems that doctors are trying to get patients out of the hospital as quickly as possible to reduce any liabilities they may incur regarding Covid19.  I'm assuming they won't discharge you until they know your digestive system is working (BM), but I can't be sure of what they may do.  Please update once you get home or if they keep you overnight.  It's good that the palpitations are reduced and that you did the "hospital gown shuffle" that so many of us have done as well.  Your in my prayers and I'm looking for you to come out this well.  Stay strong.

Lou

[ChiMama]

Thanks again 💜  I came home last night, was there a night and a half the second round.  I actually got some decent sleep the second night.  The digestion issue and lightheadedness got like 75% better, enough they wanted me gone so I checked out about 6:00PM.

Last night my temperature went up throughout the evening to about 100, then it came back down to 98.8. This morning it was 99.2 and has been between 99.2 and 99.7 all day.  I called the doctor's office to ask about it but they haven't called me back.  And it's 5:21PM now so they probably won't.  I don't feel feverish and my incision sites look OK.

I've been doing unstructured walks around the house today, "puttering," and doing spirometer a couple times an hour as much as I can do.  Feeling OK more or less.  Not pushing it.  Have some gunk coming up when I can get a good cough in, but it's mostly those little half-coughs and thoat-clearing things that don't do much.

Friends are checking in... I'm trying to be brave and positive in my replies but I really want to say "this sucks, it's really hard!"  Emotionally drained & trying not to think too much.

Thanks again for listening and your wisdom.  🐾💜🐾

[Tom Galli]

ChiMama.

It sucks and it is really hard! But, you are still here! So...

Stay the course.

Tom

[ChiMama]

Better today! I woke up feeling a little more "normal" emotionally/mentally" and less tired.  Still uncomfortable of course but not nearly like it was even yesterday.  Also I still have a temperature of 99.1-ish and the weird coughy things but maybe that's not unusual?

I'm not doing "goals" with the walking and spirometer anymore, it was making me feel like I wasn't doing enough, not getting the ball high enough... so I just do what I can when I can and I feel better this way. I just do a little extra every time.

And I miss my dog! I need to get better quick so she can come home!!!  Thanks again for the support and wise words! 💜

[Tom Galli]

Baby steps before bold steps.....

Stay the course.

Tom

[LouT]

ChiMama,

Just catching up on the forum and so glad to hear that you are beginning to feel better.  Tom is right; take your own pace and just keep going and you'll continue to improve.  Please keep us updated as you continue to heal.  

Lou

[ChiMama]

Update: Improving every day, slowly. I try to go outside in the morning to water the plants and move around, look at the birds & rabbits & lizards in the yard and feel a sense of normalcy.

Still have massive pain on my side where the chest tubes were. Almost any movement hurts. I tried the tramadol at night to help the pain so I can sleep but it doesn't work. So I find a pain free position and stay there!

Pathology came back "1.2cm minimally invasive adenocarcinoma, non-mucinous; G1 well differentiated. pT1mi, pN0"  Stage 1a.  No further treatment needed, just the usual scans.  Yay!

Hopefully my dog can come home Friday!

[LexieCat]

Good news!! The pain will continue to improve until it's virtually gone. 

Just remember to stay on top of those scans!

[LouT]

ChiMama

1a is great news and you sound like you’re well on the road to recovery.  The pain will diminish, so stay as comfortable as you can.  I’m thrilled with this update.  You stuck with it.  You’ve had a tough time but it sounds like you’re in the other side of the hill.   Keep us updated and enjoy every day.  
Lou

[Tom Galli]

ChiMama,

Great news on your IA stage but as Lexie says, keep the post surgical scan schedule!  Our disease has a devious characteristic of recurring, sometimes years after first encounter. So glad to hear you are recovering. Stay in contact. We worry when folks drop off the radar screen and...

Stay the course.

Tom

[Steff]

Great news! And I am sure you will feel better once your dog is with you - pet therapy is the best therapy!