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LouiseB

Surgery done, he's officially a survivor!

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Thanks for all the pre-op¬†thoughts.¬†Husband's surgery done!¬†He came through it very well! ūüĎć

OK, that's the good news. However, what was diagnosed as Stage I-something after the scans, turned into an at-least-StageII-awaiting-confirmation-and-lymph-node-results!

Surgeon says tumor was larger than they thought. What he hoped was tumor plus inflammation turned out to be pretty much all tumor. Instead of just right upper, they removed upper, middle and a small portion of lower. So, regardless of lymph nodes, we're definitely headed to chemo, and possibly radiation. 

I will say this now, maybe mostly for those who come after me:  prior to surgery, I had avidly searched for info, forums, experiences and support, and I found all of you here. Initially, it was good (great!) to connect, and I will be forever grateful for the swift responses! Then, having read several stories of those who'd been diagnosed with Stage I but after surgery discovered it was worse, I was almost sorry I'd discovered what 'might' happen. HOWEVER, now that 'it' has happened, I find that I am very grateful for all your stories, because, although disappointing and disturbing, it's not such a shock to the system!

I should apologize now in case this brain-dump becomes disjointed, it's been a long day. 4am wake up, 5am check in, 7:30am wheeled into surgery, 1pm out, 2pm with him in ICU, 8:30pm Uber (thank you Uber!) back to hotel, and now 10pm sitting in front of my second delicious glass of Joel Gott cab in the hotel bar, listening to an awesome bar singer/guitarist doing Ed Sheeran! :)

Where was I? Well, I had already seen my dear old man through 1 neck fusion and 2 back surgeries in past years, but not one of them was like this. Those were evidently rehearsals. This is the big time!. It's the weirdest feeling, half of me feels like I'm about  to burst into floods of tears and the other half is managing to laugh and smile while I'm in the ICU with him.

Let's concentrate on the good news. Currently, we're still at Stage II-something, not more, and -¬†as he is, in his anesthetic haze,¬†telling every member of staff who dares to enter his ICU room -¬†his lung function was 107% going into surgery, even with the adenocarcinoma,; plus,¬†since surgery he's already hitting it out of the park with his breathing gadget! ūüėú So, we're¬†confident that he will eventually have no problems with usual day to day activity.

Now we just have to get through chemo and what's beyond.

Second glass empty (jeez, that was a good cab!)! Good timing, coz singer's on his last song. Time for bed! Tomorrow is another day. 

Thanks for 'listening'.

Sometimes life's a b*tch, but it beats the alternative! ūüėú

 

 

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Thanks for the update.  Louise he is blessed to have you with him on this tough journey.   Good news that he is doing well after surgery.

They  should be able to tell you soon if it is 2A or 2B.   Then  the chemo plan will be put in place when he recovers from surgery.

Best wishes to him and you.

Donna G

 

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Good morning, Louise.  So thankful surgery went well and you had a chance to relax last night.  Tell him to keep it up with that breathing contraption from hell(!) as it will make a difference.  My guess is that the docs will order a couple of additional scans just to make sure the cancer hasn't left the chest area.  Then comes the fun of treatment planning.  I remember I was just anxious to get it moving.

Sending good thoughts - 

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Louise,

Am encouraged about the successful surgery and even the discovery of additional spots.  The surgeon was thorough and that is a good thing.  Had he or she not been so, you would have had a very nasty surprise a year or so from now.

Recovery will take time and it will be incremental -- a little more every day till near normal.  But, after surgery, there never may be a "normal".  There may be movement limitations, numbness, and pain that linger.  Unknown at this time is how long they linger; hopefully all will resolve.

Chemotherapy is likely next up.  Here is a primer I wrote a while ago that should read you in and offer some tips.  His will be called adjuvant therapy and may include radiation, as you indicate.  Its purpose is to keep cancer from recurring.  Generally, the dose rates of chemotherapy are less potent and the treatment time is shorter than a normal course.

I hope your husband is discharged soon.

Stay the course.

Tom

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19 hours ago, Susan Cornett said:

Good morning, Louise.  So thankful surgery went well and you had a chance to relax last night.  Tell him to keep it up with that breathing contraption from hell(!) as it will make a difference.  My guess is that the docs will order a couple of additional scans just to make sure the cancer hasn't left the chest area.  Then comes the fun of treatment planning.  I remember I was just anxious to get it moving.

Sending good thoughts - 

Thanks Susan, he's being a trooper, did well with the contraption for most of the day, but so much more pain than yesterday. Back on it tomorrow! :)

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14 hours ago, Tom Galli said:

Louise,

Am encouraged about the successful surgery and even the discovery of additional spots.  The surgeon was thorough and that is a good thing.  Had he or she not been so, you would have had a very nasty surprise a year or so from now.

Recovery will take time and it will be incremental -- a little more every day till near normal.  But, after surgery, there never may be a "normal".  There may be movement limitations, numbness, and pain that linger.  Unknown at this time is how long they linger; hopefully all will resolve.

Chemotherapy is likely next up.  Here is a primer I wrote a while ago that should read you in and offer some tips.  His will be called adjuvant therapy and may include radiation, as you indicate.  Its purpose is to keep cancer from recurring.  Generally, the dose rates of chemotherapy are less potent and the treatment time is shorter than a normal course.

I hope your husband is discharged soon.

Stay the course.

Tom

Thanks so much Tom! I will read your primer with thanks. Knowledge is a powerful¬†thing, and I thank you all who have gone before us! ūüĎć Today's¬†update will follow.

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Aahhh, that's better! Just settled myself in front of a glass of that tasty Joel Gott cab¬†again!ūüėĚ

Well, not a great day today...only because it's the first day after surgery, yesterday's anesthetic and heavy meds had worn off, and he had to deal with some truly excruciatingly painful moments. Two steps forward, one back! ūüėé

No kidding, he has an obscenely high pain threshold, having had a number of past injuries and surgeries. He's no wimp, so I know this was truly a bad day, bless him.

He had a scare around¬†3am, which of course I knew nothing about til this morning. Turns out one of the drains in his chest had shifted and felt like a hot knife shooting right through him. I think he briefly thought his time was up. ūüėĪ¬†

I arrived about 8am but missed the surgeon's visit to ICU, since he was called in early because of the night issue. 

The truly great news is that the surgeon told him the lymph nodes taken during surgery had been confirmed clear! This is absobloominglutely awesome. I have learned that it's not unusual for lymph nodes to appear clear in the PET scan (as his were) but confirmed malignant after surgery, so I do know this really is a huge win!

Yes, he'll still have chemo after this, adjuvant therapy as Tom mentioned above, to prevent recurrences; so doses are considerably less than if they were trying to zap a tumor with it.

Jeez, I'm learning far more about this cr*p¬†than I ever wanted to know! ūüėú

We were moved out of ICU at midday, but the move itself proved very painful and exhausting. He got a couple hours rest in the afternoon, but he's got a heckuva lot of catching up to do, so I'm hoping he has a slightly better night. All the nursing staff are fabulous, and they have also all confirmed this first day after surgery is the worst.

Second glass of Joel Gott just arrived, and musician returned from his break. This could easily become my nightly post-hospital routine. No complaints...which is a good thing, as it seems that there will be more of them than first anticipated. Given the unexpected size of tumor and larger incision, plus some drainage concerns, it looks like he'll probably be here for at least a week, rather than the 3-4 days we had hoped. 

Currently the surgeon intends to keep him¬†at least through the weekend. He doesn't want to send him home to a different island with the two chest drains in him, and that's absolutely fine by me! ūüė̬†I'm certainly not my mother's daughter¬†in terms of medical experience or skills!¬†I want him all sown up and nothing, absolutely nothing, dripping out when I get him home! ūüėĚ

Tonight's summary: heading in the right direction,¬†tomorrow¬†is another day! ūüĎć

Thanks for reading another cabernet-infused brain dump.

"This Too Shall Pass!"

Aloha, Louise

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I am so sorry he is experiencing such pain. I had a white board in my hospital room and #1 was "pain control".  If you are feeling pain, you can't do the breathing exercises they want you to do or get up and walk as often.  They monitored my pain level closely. 

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Louise,

I'm glad to hear that surgery went well (even though it didn't go exactly as planned) and that lymphnodes are clear!  My mom also had an unexpected finding during her lobectomy.  Her staging went from 1A to 3A and unfortunately the doc wasn't able to removed 1 cancerous lympnode.  It was a huge punch to the gut, but we all got through it like we have everything else. I think the fact that my mom had to stay in the hospital a bit longer than expected was a good thing.  By the time she got to go home, she was strong enough to do most things herself and pain was limited.

I'm also happy to hear that you are allowing yourself to "unwind".  It's not only a long road for the survivor, it's also a long road for those of us who are caregivers.  

Take care,

Steff

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Louise,

I know the flights between islands are short but ensure you consult with the surgeon about your husband's travel in a commercial airliner so soon after discharge.  Normally, airlines pressurize the cabin for an altitude of between 6,000 and 8,000 feet.  Since the pressure at this altitude is lower than pressure at ground level, your husband's chest, now partially empty, will expand and may indeed cause a great deal of pain during the flight.

Most important of course would be suture disruption, so ensure his surgeon knows and consents to air travel home.  Alternatively, take a ferry home.

Stay the course.

Tom

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Thanks all. He's progressing very well. Every day, improving leaps and bounds. Sleeping better, getting stronger, walking further around the corridors. 

Laurel: yes, evidently pain management is the key. That is going well. With adjustments, it's now under control, and his breathing exercises are progressing well. He's already passing their desired level at this stage.

Steff: I agree, I'm happy for him to stay as long as they recommend. I had hoped the longer stay might mean we get both tubes out, but he might still be left with one if his air leak is still an issue.

Tom: thanks so much for the heads up¬†about air travel. I did talk with the surgeon, but he's confident this will be ok by the time we leave. He's sent many patients inter island without problem. We don't have an option, no¬†ferry to Kaua'i. ūüėé

For future patients and caregivers who find this post, one thing that wasn't mentioned was the type of muscle pain that he might experience. With the main incision on his back (and maybe also the drain through his diaphragm), it was not only uncomfortable with the pressure of a relatively hard bed, but any slight movement often resulted in powerful muscle spasms up the length of his back to his shoulder blade. The surgeon confirmed this was nothing unexpected. Two improvements were (a) a pillow across his back so that the pressure on the incision was softened, and (b) a lidocaine patch place on the swelling immediately above the incision. I'm sure everyone's experience and needs are slightly different, but this advice might help others.

Onwards and Upwards!ūüĎć

- Louise

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Glad to hear he's progressing so well!  I'm sorry if I missed something, but did they wind up having to do the full/open surgery, rather than the robotic?  I know my surgeon told me that if things that happened during the surgery were different from what was expected he might have to convert to the other type.  The pain and recovery from that sounds a bit more daunting.  Still, it's something plenty of folks here have come through without too much in the way of unpleasant aftereffects once they've healed.  

At least he will be recovering in gorgeous surroundings.  My folks lived in Hawaii for five years and I got to visit them twice.  Gotta get back there one of these days!

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Hi, no you didn't miss anything. ūüėé Thankfully, it did not end up being the full open thoractomy. However, the tumor was much larger than anticipated. The incision was therefore a little larger than the surgeon originally planned, in order to get the tumor out. He said he wanted to avoid opening him up further but I think it was¬†quite a struggle, so I'm thinking perhaps that¬†caused a bit more 'trauma' to the body than if it had been a smaller easily-removable tumor.

Yes, we love our island life on Kauai. You don't say which island your parents lived on, but I hope they don't have friends on Hawaii Island itself. It is heartbreaking to see the effects of the volcanic eruption on so many families right now.

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Ah, I'm glad they were able to do the robotic, even with the larger incision--it should be MUCH faster bouncing back than the open surgery would have permitted.

My folks lived on Oahu, in Kaneohe.  My mom had a WONDERFUL five years there--right after their move back to the mainland, her seven-years-previously-diagnosed-and-treated breast cancer was found to have metastasized, and she died a few months later.  I think those years there were the happiest of her life.  

I was out to visit them with my then-husband twice.  The first time we took a side trip to Kauai, and the second to the Big Island.  Loved it there, once had plans to live in Hawaii, but it never came to pass.   The Garden State's been my home since '81.  :)

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Louise - let me add that those spasms lasted for me.  I had strong spasms in the hospital - strong enough that they forced fluid into my chest tubes.  I had the occasional mild or moderate spasm for a while, but about 3 months post surgery, they started on a Friday evening and got progressively stronger.  I took my prescribed muscle relaxer and it finally calmed them down after an hour.  The spasms absolutely took my breath away.  

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Thanks Susan. Yes, that's exactly the kind of breath-stopping spasm Steve encountered.

The more I read, the more I learn that he is likely to experience various levels of discomfort, muscle and/or nerve pain, for some considerable time (some say indefinitely). Luckily, he's a self-described 'roughy-toughy steely-eyed killer' :) who has developed a pretty high pain-threshold over years of back issues and surgeries. As long as he knows this is likely and normal, he'll cope better than wondering whether something unexpected might be going wrong inside. 

That's why this site is so very helpful. Forewarned is forearmed, and I thank all of you for being there with quick responses, your own past experiences, and comforting words of wisdom.

It's been a bit of a whirlwind the past few days, so I haven't been online much. His recovery progressed quickly. The first drain was removed on Friday, and the second on Saturday morning, so we didn't have to leave with a portable drain after all, hooray! We flew home on Saturday afternoon. Obviously the travel day was exhausting for him, but he's been doing well. Getting stronger day by day, walking around the block several times a day, still doing the breathing exercises and improving. A slightly different discomfort in his chest today, but not so worrying now we know that these kinds of movable pains are to be expected.

Our first appointment with the oncologist is tomorrow morning. I was pleased to get a consult so quickly, so that we can prepare ourselves for phase 2.¬†As you can imagine, I have loads of questions!¬†ūüėé

Onwards and Upwards!¬†ūüĎć

- Louise

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Back from first oncology appointment, so now we know what's in store for us, and I've also read Tom's chemo primer! Oh Joy!ūüėĖ

We have some 'classes' to attend in the next couple of weeks...Steve hates classes! More Joy!! ūüėē¬†We'll learn about the hospital infusion center and how things work, plus a separate class to learn about the specific drugs, side effects, etc.

In about a month, after incisions and drain sites have completely healed, we'll start the course: 4 cycles, once every 3 weeks. Probably Cisplatin and Alimta. We're told Cisplatin is not as bad as some other drugs, as far as immuno-suppression¬†and nausea are concerned. Everything's relative, but that's a little ray of light I shall hang on to!¬†ūüėé

Our oncologist seems great and was already well clued up on Steve's history. Turns out our pulmonologist presented his case to the oncology team recently, because of the strange symptoms that initially alerted Steve to the problem, and which resulted in discovering the cancer earlier than many. So, we didn't have to waste time going through the past 3 month history yet again, and our meeting was all business and information. The oncologist also removed the steri-strips from the 3 incisions (2 small, 1 larger), since Steve was getting a lot of discomfort, mostly from the large incision. All three are healing well, but as expected I'm afraid he will continue to be bugged with muscle spasms for some time.

We stopped for lunch on the way home, but he became very uncomfortable. The appointment, travel time, and then lunch, meant he was late for his meds, and we hadn't taken any with us. So, we learned a big lesson today: if there's any chance we might be away from home longer than anticipated, we'll make sure at least we have meds with us, especially the Gabapentin for nerve pain.

Next stop, visit to primary care physician on Monday to have the drain stitches removed, then forward to chemo!

Onwards and Upwards!ūüĎć

- Louise

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Hey, glad to hear things are moving along.  Hope his spasms/pain subside soon.  And as much as he doesn't want the classes, it's ultimately better to know what to expect.  I get it, though, "Oh, crap, one more thing to deal with."

Glad to hear the medical team are all on the same page.  I'm sure he appreciates your being there to help navigate.

Onward, indeed!  :)

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While out in the world, I took gabepentin pills and salon pas patches for pain.  Actually, if I knew I would be out for hours I would put on one or two salon pas patches on muscle areas that had been painful to beat the onset of muscle pain.  As my surgeon and I duscussed, the painful areas were not at the incision sites, but they were at the drain site and muscle areas where video assisted robotic surgery was traveling.

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Louise,

With Steve already showing sensitivity to muscle spasms, be mindful that in a very small population of those receiving platinum-derived chemotherapy (Cisplatin), some may start showing low levels of magnesium in the blood.  This unfortunately causes muscle cramps.  At his next blood test, ask the nurse or doctor to show you his magnesium levels and record the level before the first infusion.  Then track it during the infusion process (one normally gets a post therapy blood test about 2 days after infusion and a pre-therapy blood test before each infusion). If he starts displaying low magnesium levels, he'll experience more muscle cramps.  I am prescribed a minimum daily dose of 500 mg of magnesium with an objective dose of 1000 mg to control my chemotherapy (Carboplatin) induced muscle cramps.

High levels of magnesium can cause "GI disturbances" so I take one pill in the morning and if by lunch, don't show GI irregularity, take another at bed time.  Fortunately, almonds have very high concentrations of magnesium and I can get some cramp relief munching several ounces if I'm having a problem day.

This is a rare side effect and mention it only because of Steve's sensitivity.  So don't worry.  Knowledge is power and tracking magnesium blood levels is easily done.

Stay the course.

Tom

 

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My first line treatment was Cisplatin and Alimta.  i had nausea although well controlled by meds.  i also experienced neuropathy and tinnitus.  My side effects were relatively mild compared to others.  Sounds like you have a great plan in place.  

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Thanks for the helpful comments and encouragement. Although I read your comments at the time, I apologize¬†for not replying¬†sooner. I had repeated issues logging in. Each time I tried, my password was said to be invalid, even though I had it recorded so know it was what I had used. So after several tries¬†I was¬†locked out for hours. After several repeats of that sequence, I gave up¬†and then life took over. ūüėĚ

Anyway, all is trucking along well. Magnesium levels are good (thanks, Tom), and he hasn’t had any bad muscle or nerve attacks for some time. We started chemo on June 19 (4 3-week cycles), and we head to infusion #3 tomorrow (Tues). He coped with #1 surprisingly well, with just some major loss of appetite and nausea 3 days after the infusion, and only for a couple of days at its worst, but #2 has been a bit more of a challenge. He’s had good and not so good days (nausea-wise) on and off throughout the 3 weeks, but we’re working through it.

I found a useful¬†app, Living with Cancer,¬†that‚Äôs easy to record daily stuff including meals and also his ‚Äėmood‚Äô, so I can see how¬†the cycles compare, make notes and questions for the oncologist, and also remind myself of which foods are likely¬†to work for him at different stages. The app has lots of flexible tracking features and also¬†enables users¬†to share stuff with friends and relatives If they wish, but I just use it for my own benefit.

The second cycle has definitely sapped his strength, and even going for his regular walks is an effort, but he knows he must stick with it and get some exercise. As I’ve said previously, he’s a roughy-toughy - I’m so proud of him and the way he’s coping with it all! 

In the past week, he’s begun to notice the metallic taste that we’ve read about. We also noticed that he sweats a great deal, and feels like he’s having hot flashes, which seems to be another known side effect. However, so far, I do believe his side effects are still, like you Susan, mild compared to many, and I’m so grateful for that.

Time flies, we‚Äôre half-way there already! ūüėé

Onwards and Upwards!ūüĎć

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Hi, Louise,

Good to hear things are going OK over there in paradise!  I'm sorry you had so much difficulty with the website.  I've never had a problem, but you aren't the first to have one.  If you're continuing to have difficulty, contact one of our admins to see if they can help you figure it out.  Sometimes clearing browser history or even using a different browser can make a difference.

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Louise,

So glad to hear that surgery is over and that he is moving forward with his recovery. Sending all the best for getting through the chemo and its side effects. 

 

Ro

 

 

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