Arrived early this a.m. to have missed the surgical team (of course) and overnight nurse tells me that James slept great! She leaves and he writes that she let him sleep through 2 a.m. pain meds last night so he work up full on pain, way over due, early a.m. He wrote that everyone else seems to be fine waking him up (respiratory, vitals, blood draw, etc) but not the nurse for pain meds. I received a slight reprimand when I asked that they give him the meds overnight whether he's sleeping or not. No, he has to ask for it. I said I'm asking now and she said you're not the patient. Doesn't take much these days to flip the switch and piss me off. I have the note James had written to me with a few descriptive expletives and am thinking of handing it to the same nurse when she comes back on shift tonight at 7 p.m., probably shouldn't. We'll see.
On the other hand our day nurse is nice and kind and gentle and for the most part keeping up with the schedule. I was, however, reprimanded by her for suctioning around the stoma when James coughs. Respiratory Therapy (RT) had shown me how to do it but she's not happy about it. A bit of conflict. Always something. James backed me up with a long written explanation to her about my impromptu training. We'll see if I can keep assisting or not.
Circling back to the surgical team (maybe skip this part if you have a queasy stomach) James told them about "tasting" the saline solution when RT cleaned stoma/trachea yesterday. When RT visits every 4 hours they put saline solution into the stoma to loosen things up and cause him to cough. Most comes out the stoma which they suction but there was quite a bit last night that he had to clear from his mouth. Dr Vaezi had mentioned at his last visit concern about leakage/breach between trachea and esophagus. They took him for a test this morning where he had to swallow a contrast liquid for imaging, a little stressful since he hadn't swallowed anything since before surgery, all food/liquid goes through the feeding tube straight into stomach. He hasn't even had a sip of water. Anyhow he did well with the test even though he was (once again) overdue for pain meds and RT. He's a strong guy and the nurse quickly caught up with meds etc when back in the room. The trip through the hospital with the gurney was exciting. The nurse didn't want to wait for patient transport so she and I pushed the bed through ourselves.
Now we're waiting on some other unknown imaging test that's been scheduled. When inpatient you never have any idea when it'll happen. At their whim. So we're sitting and relaxing back in the room. I'm sitting in the sunshine. James is working on the crossword. We're both breathing easy. Things are currently A-ok.
Thanks for thinking of us. Sending love!
Wednesday, January 31, 2018
Tuesday, January 30, 2018
Day 7 yet again
The afternoon/evening has been a bit better than the morning. James is settled in pretty well for the night although his "night" is being woken every couple hours for this that the other. No rest for the wicked or weary, I can never remember how that goes.
A question for Dr. Vaezi next time we see him is why does he feel like "stuff" is coming out his mouth when he's trying to cough it up from his stoma during the respiratory therapy sessions. Bizarre if the two tracks (mouth to stomach, stoma to lungs) are supposed to be completely separate now. Need to ask the surgical team in the a.m. and hope it gets back to Vaezi.
Tomorrow will be one week from surgery. I don't think they'll be releasing him from the hospital yet, no clear sign of when that'll happen. After hospital he'll go to the rehab clinic for give-or-take-a-week where he'll improve, get stronger, and we'll learn our new way of living breathing through the neck and caring for the stoma.
I have no idea when Vaezi will try to place the prosthesis again. Need to ask that as well but feel as though it's most important to heal and eliminate infection first! We'll get there.... if not? He's actually quite adept at carrying on conversation as written word. Eventually maybe I'll be better at reading lips too.
We've gotten through another day. Hope yours was decent too. Hugs from us both.
A question for Dr. Vaezi next time we see him is why does he feel like "stuff" is coming out his mouth when he's trying to cough it up from his stoma during the respiratory therapy sessions. Bizarre if the two tracks (mouth to stomach, stoma to lungs) are supposed to be completely separate now. Need to ask the surgical team in the a.m. and hope it gets back to Vaezi.
Tomorrow will be one week from surgery. I don't think they'll be releasing him from the hospital yet, no clear sign of when that'll happen. After hospital he'll go to the rehab clinic for give-or-take-a-week where he'll improve, get stronger, and we'll learn our new way of living breathing through the neck and caring for the stoma.
I have no idea when Vaezi will try to place the prosthesis again. Need to ask that as well but feel as though it's most important to heal and eliminate infection first! We'll get there.... if not? He's actually quite adept at carrying on conversation as written word. Eventually maybe I'll be better at reading lips too.
We've gotten through another day. Hope yours was decent too. Hugs from us both.
Day 7 footnote
Yesterday I felt comfortable leaving midday for a few hours knowing James was in good hands. Today, not so much..... Can we nurse swop?
Day 7 still kicking
Dr. Vaezi, our surgeon, just stopped by. He's concerned with the redness around James' neck so will be starting him on antibiotics today. Looks like we're in hospital for a bit longer. He mentioned a possible swallow test tomorrow which is exciting!
Overall this morning James seems sick and tired of being sick and tired. Closing his eyes for a little zzzz... Maybe me too.
Monday, January 29, 2018
Day 6 UMass '80s Boy Band
I came in nice and early today and caught the surgical rounds. James told the nurses after they'd left that the '80s Boy Band had stopped by, too funny. The young surgeons surrounded the bed, poked pushed and pulled. They noted his neck is very red (not a huge change from over the weekend) I commented on the swelling (although it's a bit better) They said drains will stay in (bummer) Not quite ready to test swallowing fluids and want to keep watching things. They'll confer wth Vaezi. I'm curious if he pops in today and if anything changes. Time will tell.
The nurses stayed on top of pain meds overnight which is awesome. I don't think he slept much, fits and spurts, but who does in the hospital? The day nurse, Nicole again (love Nicole) has done all she needs to do for the moment and I may test drive going home to do some work and coming back in the afternoon through early evening. James seems pretty comfortable and I feel ok leaving him in Nicole's hands.
I was hoping to be here if Dr. Vaezi pops in but they say there is no way to time a visit. He swings by when he can, maybe in the afternoon. Hope I can catch him! If not James will need to catch me up.
The nurses stayed on top of pain meds overnight which is awesome. I don't think he slept much, fits and spurts, but who does in the hospital? The day nurse, Nicole again (love Nicole) has done all she needs to do for the moment and I may test drive going home to do some work and coming back in the afternoon through early evening. James seems pretty comfortable and I feel ok leaving him in Nicole's hands.
I was hoping to be here if Dr. Vaezi pops in but they say there is no way to time a visit. He swings by when he can, maybe in the afternoon. Hope I can catch him! If not James will need to catch me up.
Sunday, January 28, 2018
Sunday Day 5 v2
James is all cleaned up. Linens are changed. He's wearing PANTS, hurrah! Somehow you feel a little more human in pants in hospital. They're comfy blue scrub pants perfect for walking the halls if it comes to that. Also perfect for sitting in the chair by the window perusing the Sunday paper.
We had a family friend swing by this a.m. to check in on her Uncle James. Andrea is a respiratory therapist for the hospital. She's working the ER today but squeezed in a little therapy for James as timing was perfect to clear the stoma, his breathing is impacted when things build up. He is wearing a small "mask" at the stoma for a constant supply of humidified oxygen as we need to keep everything moist and problems occur if it gets too dry. Thank you Andrea for taking such great care of us!!
Andrea also nudged the nurse to pop in sooner rather than later with pain meds. Good to have caring connections. Our nurse, Nicole (who is fabulous) straightened out lidocaine patch glitch (wasn't in the system so we had to keep asking for it) and also the bacitracin ointment (yes should be applied to incision/stitches 3x day). All is good.
We had a family friend swing by this a.m. to check in on her Uncle James. Andrea is a respiratory therapist for the hospital. She's working the ER today but squeezed in a little therapy for James as timing was perfect to clear the stoma, his breathing is impacted when things build up. He is wearing a small "mask" at the stoma for a constant supply of humidified oxygen as we need to keep everything moist and problems occur if it gets too dry. Thank you Andrea for taking such great care of us!!
Andrea also nudged the nurse to pop in sooner rather than later with pain meds. Good to have caring connections. Our nurse, Nicole (who is fabulous) straightened out lidocaine patch glitch (wasn't in the system so we had to keep asking for it) and also the bacitracin ointment (yes should be applied to incision/stitches 3x day). All is good.
Sunday Day 5 v1
James is good. He slept on/off last night woken sporadically by med staff and is closing his eyes again now. Today may be uneventful, it's a Sunday and inpatient weekends can be quiet.
Swelling looks to be down the tiniest bit at the jawline, nice.
They removed two IV lines and put in 1 fresh, also nice.
When using the feeding tube last night James said they "pushed" the food in rather than waiting for the slow drip. He said when they do that it can come back up a bit so he "tastes" the food. I asked if it was yummy? No. I said it looks like it should taste like vanilla pudding. No. Too bad.
I need to ask why we have a prescription tube of bacitracin ointment which is unopened sitting here looking at me. I feel as though the surgeon perhaps wanted the stitches to be lubed but when I ask med staff they don't know. I missed the surgical team again this morning (of course, running late, couldn't find my glasses, needed to add coolant to the "other" car, see previous post) so I think I'll send a message to try to get an answer.
Waiting to meet the nurse du jour, Nicole. I see that she's a 7-7 shift, yikes. Must be exhausting to work 12 hours straight in the wards. Will need to be extra kind as the day goes on.
Swelling looks to be down the tiniest bit at the jawline, nice.
They removed two IV lines and put in 1 fresh, also nice.
When using the feeding tube last night James said they "pushed" the food in rather than waiting for the slow drip. He said when they do that it can come back up a bit so he "tastes" the food. I asked if it was yummy? No. I said it looks like it should taste like vanilla pudding. No. Too bad.
I need to ask why we have a prescription tube of bacitracin ointment which is unopened sitting here looking at me. I feel as though the surgeon perhaps wanted the stitches to be lubed but when I ask med staff they don't know. I missed the surgical team again this morning (of course, running late, couldn't find my glasses, needed to add coolant to the "other" car, see previous post) so I think I'll send a message to try to get an answer.
Waiting to meet the nurse du jour, Nicole. I see that she's a 7-7 shift, yikes. Must be exhausting to work 12 hours straight in the wards. Will need to be extra kind as the day goes on.
Saturday, January 27, 2018
Not all wine and roses....
James was napping midday today and he needed to sleep, so the nurse let him, pain meds were missed. You have to stay on top of the pain. No pain meds = pain. James wakes up. I call nurse saying he's in pain. Just then the respiratory medicine person swoops in to clean out the stoma. And the nurse shows up to give the meds. So everything happens at once and the pain is not managed. Not at all. Full on pain. James likens the cleansing of the stoma under the best conditions to waterboarding. Add on top of that jabbing a white hot poker in your eye or rather in your neck. We certainly don't need to do THAT again. Tonight the nurse made sure all meds were in place before the respiratory med tech returned for the early evening cleanse. He gave him both the regular pain med plus the booster. Loved our nurse John tonight. Thank you John.
Footnote... I left the hospital and noticed a tire was low. Stopped to fill the gas tank and used the station air hose to fill the tire and somehow managed to do the reverse. Tire is now completely flat. Sander to the rescue to help change tire for wee donut and we'll figure out air issue at home in the a.m....... or use alternate car. I have options. Shhhh don't tell James.
Footnote... I left the hospital and noticed a tire was low. Stopped to fill the gas tank and used the station air hose to fill the tire and somehow managed to do the reverse. Tire is now completely flat. Sander to the rescue to help change tire for wee donut and we'll figure out air issue at home in the a.m....... or use alternate car. I have options. Shhhh don't tell James.
Day 4 room 526B window side
Sitting with James reading dueling papers. I picked up the Telegram on my way in and found him already reading it. Good to know they're taking care of mind and body!We're currently practicing the art of patience. The nursing staff on the floor is stretched much thinner than the ICU and when you're the patient waiting in the bed for the lidocaine and nicotine patches it can feel like forever! Hurrah, the nurse just rolled in. Pausing to chat....
The nurse is gone and we're all set except for the lidocaine patch for James' back. It's something we found was super effective for his lower back issues (blown disks, spinal stenosis, osteo arthritis) first used in ICU last month and I'd been buying them for home ever since. 12 hours on and 12 hours off. If you have any kind of back pain I'd recommend it highly. We buy icy hot lidocaine highest dose but there are others out there. James never wanted to take opiates for his back so just suffered through the pain. Love having a solution for relief.
The nurse unhooked him from the feeding tube drip. Still feeding through the nose but now it's "food" every 6 hours (I think he said) through a funnel-ish-tube they'll attach to the wee yellow feeding tube still stitched in place. It's one more slight disconnect for mobility. Hurrah!
He still has quite a bit of swelling around his neck and chin, not surprising given what he's gone through. The respiratory therapist comes every 4 hours to make sure all is ok although I haven't seen anyone yet this morning. Hmmm....
He hasn't asked for pain meds yet, for as long as I've been here at least. That's a good sign!
All for now, I'll post again if anything exciting happens. Til then be assured all is well and he's hanging in thanks to the good kind patient care and nursing staff at UMass Memorial. Adding a pic of his room with a view while he works on the crossword. Hope your day is beautiful wherever you may be. Take a walk in the sunshine for James! xxoo Beth
Friday, January 26, 2018
Day 3 surgical update at sunset
A young surgeon stopped by to check in then Dr. Vaezi, our surgeon. Swelling around James' chin is ok, only bad if it inhibits breathing. Ears numbing out isn't anything to be concerned about. Drains stay in for a bit longer. All looks/sounds ok. We need to relax.
I was helping James readjust things and caught/yanked on the feeding tube that's stitched into his nose. Ouch. I said he's officially allowed to say he doesn't feel safe with me in the room the next time they ask. He told me that our favorite other Beth also did it up in ICU and yanked harder than me so I don't feel so bad.
He's still not sleeping.
I was helping James readjust things and caught/yanked on the feeding tube that's stitched into his nose. Ouch. I said he's officially allowed to say he doesn't feel safe with me in the room the next time they ask. He told me that our favorite other Beth also did it up in ICU and yanked harder than me so I don't feel so bad.
He's still not sleeping.
Day 3 shift to regular room p.m.
James has been shifted out of ICU to a regular room. As much as I was worried about losing all the 1:1 care and worry about the regular ward being noisy it's seems nice and quiet and for now he has no roommate and is by the window, nice.
He hadn't been sleeping well at all. They tried Melatonin on top of the Ativan without much luck. Always difficult in the hospital but compounded by the lack of sleep before the surgery (breathing issues, stress and anxiety) being poked prodded and sponge bathed (at 5 a.m., really?) it's even worse. I'm really hoping he'll catch up with the much needed sleep in the new room.
The med staff in the ICU went rogue before moving us out by cutting long tab off the blue pen cap sticking out of the tube in his neck. It's slightly less insane looking now.
We had a fun trip from 3rd to 5th floors. Our favorite nurse, Beth, was driving the hospital bed with a little help and after waiting forever for the patient elevator found out that only one was working so she hopped us on the down even though we needed to go up as soon as she saw it open. We rode to the basement then back up with it stopping at almost every floor down and up for staff (without patients) who had called the elevator. Beth gave everyone of them grief for using/abusing the patient side ride and wouldn't let them on. Too funny. We'll miss Beth.
He hadn't been sleeping well at all. They tried Melatonin on top of the Ativan without much luck. Always difficult in the hospital but compounded by the lack of sleep before the surgery (breathing issues, stress and anxiety) being poked prodded and sponge bathed (at 5 a.m., really?) it's even worse. I'm really hoping he'll catch up with the much needed sleep in the new room.
The med staff in the ICU went rogue before moving us out by cutting long tab off the blue pen cap sticking out of the tube in his neck. It's slightly less insane looking now.We had a fun trip from 3rd to 5th floors. Our favorite nurse, Beth, was driving the hospital bed with a little help and after waiting forever for the patient elevator found out that only one was working so she hopped us on the down even though we needed to go up as soon as she saw it open. We rode to the basement then back up with it stopping at almost every floor down and up for staff (without patients) who had called the elevator. Beth gave everyone of them grief for using/abusing the patient side ride and wouldn't let them on. Too funny. We'll miss Beth.
Day 3 ICU a.m.
I arrived a wee bit late and missed the surgical team visit. James said they're thinking he may move out of ICU today for a couple days then to rehab for a week. We'll see what the day brings....
Respiratory therapy was here overnight and cleaned out the stoma so his breathing is nice and clear.
He has a numb sensation in his ear lobes which is a bit odd.
We have our favorite nurse, Beth, today. Yay!
Hoping the surgeon stops by today so we can ask about the pen cap sticking out of his neck. Really pretty crazy. To re-cap (ha!) the voice prosthesis would not stay in place during the surgery so they rigged a placeholder using a small piece of catheter line with a sterile pen cap as a stopper. Update that Beth said surgery would stop by to discuss pen cap and ear tingling. Excellent. Will update you after they update us.
James still didn't get much sleep last night. He's closing his eyes now. Hopefully he'll be able to cat nap on/off today in amongst the med stuff.
Respiratory therapy was here overnight and cleaned out the stoma so his breathing is nice and clear.
He has a numb sensation in his ear lobes which is a bit odd.
We have our favorite nurse, Beth, today. Yay!
Hoping the surgeon stops by today so we can ask about the pen cap sticking out of his neck. Really pretty crazy. To re-cap (ha!) the voice prosthesis would not stay in place during the surgery so they rigged a placeholder using a small piece of catheter line with a sterile pen cap as a stopper. Update that Beth said surgery would stop by to discuss pen cap and ear tingling. Excellent. Will update you after they update us.
James still didn't get much sleep last night. He's closing his eyes now. Hopefully he'll be able to cat nap on/off today in amongst the med stuff.
Thursday, January 25, 2018
Surgical Team Visit
The surgical residents stopped by and all looks good. They tweaked and pulled the various lines/drains and admired their handiwork. Goal for the day is to remove a couple lines (yay) sit up in a chair and maybe walk around a tiny bit. Amongst other things they're keeping an eye on calcium levels as removal of thyroid lobe may have impacted the parathyroid.
They've found and returned his clothes from the surgical locker. It's the little things in life...
The nurse of the day was just in for morning rounds. Patches have been switched and meds have been given. We've all asked James multiple times whether he's warm enough (me last night, nurse last night, me this morning, nurse this morning, aides) because he's sitting in half a hospital gown and we're all freezing. He's good.
They've found and returned his clothes from the surgical locker. It's the little things in life...
The nurse of the day was just in for morning rounds. Patches have been switched and meds have been given. We've all asked James multiple times whether he's warm enough (me last night, nurse last night, me this morning, nurse this morning, aides) because he's sitting in half a hospital gown and we're all freezing. He's good.
The Morning After
I'm sitting with James in the ICU. He's doing so much better than last night. He's not ready for visitors yet but sends love to all.
He has tubes flowing from everywhere and a little MacGyver thing going on at the stoma, temporary tube has a pen cap tucked in to keep it open, modern medicine at it's finest!! Yikes! They've put him on insulin as the surgery shocked his body and levels are off. He's on a pain med that's keeping him comfortable without over doing it. He's said that his neck hurts all over, not surprising given the extremity of the surgery and the round the world stitches. Last night it sounded as though they were going to try to get him up and moving fairly quickly here. Not sure how that'll happen with current hook-ups but we'll see how the day progresses. Breathing is still nice and easy. Ahhhh.....
The plastic surgery team is supposed to swing by this a.m., in his words to "admire their handiwork". Communication is written pen to paper, old school and honestly perfect. I brought the white board in but he seems more comfortable with the clipboard/pen the nursing staff provided overnight.
I'll update again once the doctors stop by. xxoo Beth
He has tubes flowing from everywhere and a little MacGyver thing going on at the stoma, temporary tube has a pen cap tucked in to keep it open, modern medicine at it's finest!! Yikes! They've put him on insulin as the surgery shocked his body and levels are off. He's on a pain med that's keeping him comfortable without over doing it. He's said that his neck hurts all over, not surprising given the extremity of the surgery and the round the world stitches. Last night it sounded as though they were going to try to get him up and moving fairly quickly here. Not sure how that'll happen with current hook-ups but we'll see how the day progresses. Breathing is still nice and easy. Ahhhh.....
The plastic surgery team is supposed to swing by this a.m., in his words to "admire their handiwork". Communication is written pen to paper, old school and honestly perfect. I brought the white board in but he seems more comfortable with the clipboard/pen the nursing staff provided overnight.
I'll update again once the doctors stop by. xxoo Beth
Wednesday, January 24, 2018
Surgery v2
It was an extensive surgery, 8 hours and a million stitches later James is in ICU with the tumor and larynx removed. The surgeon believes that margins are clean and he took a few lymph nodes to biopsy. The voice prosthesis did not maintain placement so James has a temporary catheter in place at the stoma and the prosthesis will be inserted in 2-3 weeks. His breathing is nice and even.
The size of the incision was unexpected. It's horizontal across his throat where stoma is located then angles up diagonally on both sides towards his ears. When Phoebe and I visited him in the ICU after the surgery the nursing staff was still working to get him comfortable so we didn't stay long. I'm hoping that he'll sleep well tonight and I'll be back early tomorrow to catch the surgical rounds. The nurse promised she would keep him comfortable overnight.
I've packed a bag for tomorrow with a white board for communication (thanks Sheryl) amongst other things. They recommended that I not leave his cell phone tonight as they wanted him to rest but I'll bring it back tomorrow if you'd like to text any well wishes. I'll update again in the morning!
The size of the incision was unexpected. It's horizontal across his throat where stoma is located then angles up diagonally on both sides towards his ears. When Phoebe and I visited him in the ICU after the surgery the nursing staff was still working to get him comfortable so we didn't stay long. I'm hoping that he'll sleep well tonight and I'll be back early tomorrow to catch the surgical rounds. The nurse promised she would keep him comfortable overnight.
I've packed a bag for tomorrow with a white board for communication (thanks Sheryl) amongst other things. They recommended that I not leave his cell phone tonight as they wanted him to rest but I'll bring it back tomorrow if you'd like to text any well wishes. I'll update again in the morning!
Back story
A little back story to why we're at where we're at.... please note this is all based on my memory which may be fuzzy at times.
James has been a smoker for 30+ years, a pack a day. He talks about it starting in the military and how they could buy a carton of Camels for $2, crazy.
In 2010 his voice was becoming rough/gruff. His primary care physician (PCP) referred him to an ear nose and throat specialist (ENT) who scoped his throat and found Leukoplakia which they removed during a day surgery scraping procedure.
Note that James has never been one for going to the doctor. I'll schedule appointments for myself at the drop of a pin or twinge of pain but James will put it off and off and off forever.... In this instance the rough/gruff voice started back up again a year or two ago. He was assuming it was the Leukoplakia again, he had been previously stressed by the scraping procedure, he didn't have a great rapport with the ENT physician and so he avoided going back.
Flash forward to this fall/winter. When he was finally ready to make the appointment because he was in distress with throat etc there was a huge delay. James hadn't gone to his PCP for 3-4 years so he had been dropped as a patient. We do have health insurance through the Mass Health Connector (thank goodness for that) but the hospital clinic where his PCP is located had dropped him as a patient and were no longer accepting new. We had to jump through hoops to get him back into the system.
James' voice had been getting worse and worse, his breathing was impacted and he had an ear ache that wouldn't go away. Our daughter had been sick all fall and tested positive for the flu so James assumed he also had the flu. He suffered through a month or two of not getting better with rest fluids etc before he saw his PCP. James was put on an antibiotic for the ear and prior authorization was submitted to insurance for a chest MRI due to breathing issues. They schedule a follow-up with the ENT and follow-up with PCP both a month out.
The antibiotic does nothing to alleviate the ear pain. The "flu symptoms" are still there. No MRI has been scheduled due to an insurance issue.
A month later James sees the PCP again who resubmits for MRI. He's scheduled with the ENT a couple days later who scopes his throat and finds a large mass at the larynx. The ENT schedules an urgent throat MRI and also an urgent follow-up with an ENT surgeon who specializes in Oncology, both are booked for the following week.
The MRI shows a mass localized to the larynx. The ENT surgeon initially says it looked like it could be addressed with radiation/chemo prior to surgery to avoid full laryngectomy but after consult with radiologist they pushed for full laryngectomy straight away. We were not ready at this point to agree to laryngectomy. James wanted to know first if the cancer had metastasized, if yes he would not want to do the radical surgical procedure.
We left the ENT appointment on a Friday afternoon and that night James' breathing was so increasingly distressed that we drove to ER and he was admitted to ICU. In the ICU they started steroids which began to relieve the swelling/stress on the airway. After discussion with the PCP who had suggested a second opinion prior to full laryngectomy we agreed to have the surgeon biopsy and de-bulk the tumor to open the airway. We also wanted a PET scan to check that the cancer hadn't metastasized which could only be done on an outpatient basis. James was in ICU for 6 days, the surgery was successful, he could breathe again and the biopsy was positive for cancer.
James was released from the hospital on Dec 21. The following month was taken up with testing and phone calls to insurance trying to push for second opinion as suggested by PCP. The second opinion would never happen after a complete nightmare of run-around by ins co (a story for another time).
The PET scan was done and results are that the tumor extends above/below the larynx and involves the cartilage. Our options were to go forward with the total laryngectomy followed by radiation/chemo or start with radiation/chemo and most likely total laryngectomy afterward anyways. The radiation/chemo would further reduce function of the larynx which was already impacted by tumor. James was struggling eating/drinking and after much consideration opted to go ahead with full laryngectomy.
We do not regret the initial decision when in ICU to hold for further testing as we needed time to process the decision and James needed to know via PET scan that the tumor had not metastasized. He based the laryngectomy decision on survival rate and quality of life.
In hindsite and for anyone else questioning laryngeal cancer the symptoms for James it began with the gruff/rough voice and then ear pain, difficulty breathing. If you are a smoker I would recommend seeing an ENT at the first sign of voice change. Please don't wait until the other symptoms arise and please try to quit smoking.
James has been a smoker for 30+ years, a pack a day. He talks about it starting in the military and how they could buy a carton of Camels for $2, crazy.
In 2010 his voice was becoming rough/gruff. His primary care physician (PCP) referred him to an ear nose and throat specialist (ENT) who scoped his throat and found Leukoplakia which they removed during a day surgery scraping procedure.
Note that James has never been one for going to the doctor. I'll schedule appointments for myself at the drop of a pin or twinge of pain but James will put it off and off and off forever.... In this instance the rough/gruff voice started back up again a year or two ago. He was assuming it was the Leukoplakia again, he had been previously stressed by the scraping procedure, he didn't have a great rapport with the ENT physician and so he avoided going back.
Flash forward to this fall/winter. When he was finally ready to make the appointment because he was in distress with throat etc there was a huge delay. James hadn't gone to his PCP for 3-4 years so he had been dropped as a patient. We do have health insurance through the Mass Health Connector (thank goodness for that) but the hospital clinic where his PCP is located had dropped him as a patient and were no longer accepting new. We had to jump through hoops to get him back into the system.
James' voice had been getting worse and worse, his breathing was impacted and he had an ear ache that wouldn't go away. Our daughter had been sick all fall and tested positive for the flu so James assumed he also had the flu. He suffered through a month or two of not getting better with rest fluids etc before he saw his PCP. James was put on an antibiotic for the ear and prior authorization was submitted to insurance for a chest MRI due to breathing issues. They schedule a follow-up with the ENT and follow-up with PCP both a month out.
The antibiotic does nothing to alleviate the ear pain. The "flu symptoms" are still there. No MRI has been scheduled due to an insurance issue.
A month later James sees the PCP again who resubmits for MRI. He's scheduled with the ENT a couple days later who scopes his throat and finds a large mass at the larynx. The ENT schedules an urgent throat MRI and also an urgent follow-up with an ENT surgeon who specializes in Oncology, both are booked for the following week.
The MRI shows a mass localized to the larynx. The ENT surgeon initially says it looked like it could be addressed with radiation/chemo prior to surgery to avoid full laryngectomy but after consult with radiologist they pushed for full laryngectomy straight away. We were not ready at this point to agree to laryngectomy. James wanted to know first if the cancer had metastasized, if yes he would not want to do the radical surgical procedure.
We left the ENT appointment on a Friday afternoon and that night James' breathing was so increasingly distressed that we drove to ER and he was admitted to ICU. In the ICU they started steroids which began to relieve the swelling/stress on the airway. After discussion with the PCP who had suggested a second opinion prior to full laryngectomy we agreed to have the surgeon biopsy and de-bulk the tumor to open the airway. We also wanted a PET scan to check that the cancer hadn't metastasized which could only be done on an outpatient basis. James was in ICU for 6 days, the surgery was successful, he could breathe again and the biopsy was positive for cancer.
James was released from the hospital on Dec 21. The following month was taken up with testing and phone calls to insurance trying to push for second opinion as suggested by PCP. The second opinion would never happen after a complete nightmare of run-around by ins co (a story for another time).
The PET scan was done and results are that the tumor extends above/below the larynx and involves the cartilage. Our options were to go forward with the total laryngectomy followed by radiation/chemo or start with radiation/chemo and most likely total laryngectomy afterward anyways. The radiation/chemo would further reduce function of the larynx which was already impacted by tumor. James was struggling eating/drinking and after much consideration opted to go ahead with full laryngectomy.
We do not regret the initial decision when in ICU to hold for further testing as we needed time to process the decision and James needed to know via PET scan that the tumor had not metastasized. He based the laryngectomy decision on survival rate and quality of life.
In hindsite and for anyone else questioning laryngeal cancer the symptoms for James it began with the gruff/rough voice and then ear pain, difficulty breathing. If you are a smoker I would recommend seeing an ENT at the first sign of voice change. Please don't wait until the other symptoms arise and please try to quit smoking.
Surgery v1
James has gone in to surgery. We had a 6 a.m. arrival for an 8:30-9 a.m. surgery start and they rolled him in to surgery at 9 a.m. The surgeon is estimating 6-8 hours if he doesn't have complications so we may not know anything until late afternoon to early evening.
As previously noted Dr. Vaezi will be performing the full laryngectomy with permanent stoma and voice prosthesis. He'll try to remove the lymph node that's hot if he can reach it but not if it would cause other problems. He's also doing a partial thyroidectomy removing an affected lobe of the thyroid, assuming left lobe as cancer localized to left portion/area of the larynx.
James slept poorly last night. His breathing was troubled again, excessive coughing causing swelling which inhibited the airway. The nursing/anesthesia staff in pre-op gave him a "peace pipe" inhaler/atomizer to try to open up the airway so they wouldn't have to do an awake intubation which is not fun. He was dozing a tiny bit in pre-op while waiting and seemed in ok spirits when they took him away for the surgery. The anesthesiologist was a nice young guy with a positive upbeat demeanor which helps!
Phoebe and Sander were here with us, nice that we could all be in with James while he was being prepped. Sander has gone to work and Phoebe and I are hanging out in the surgical waiting room for the duration. I'll post again as soon as I know anything! xxoo Beth
Tuesday, January 23, 2018
Tiny note...
Tiny added note that James is actually very strong and doing well. Since making the decision to move forward with the full laryngectomy I think he's just ready to do it and move on. The cancer was caused by 30+ years smoking, starting in the military. He's a tough cookie and will get through this, I have faith. If anyone out there is still smoking now is the time to quit. xxoo from us both!
The start of James' Cancer Blog
My husband James has been diagnosed with Stage IV Laryngeal Cancer. I am going to repurpose this blog to keep friends/family updated as we navigate treatment (surgery, chemo/radiation combo).
Stage IV Laryngeal (we have been told) is not staged in the same was as other cancers in that it tends not to metastasize and there are good odds for survival in the advanced stage with full laryngectomy (removal of the larynx) followed by 7 weeks of combined chemo/radiation. The high staging is due to advanced tumor growth, the tumor is located within the left side of larynx extending vertically above/below and also infiltrating the cartilage.
During diagnosis and testing James had a PET scan to confirm that the cancer is localized. The surgeon has high hopes of removing everything affected although at least one lymph node was found to be "hot" which is in a difficult spot to remove surgically. If the affected lymph node can't be removed they will address it with aggressive radiation treatment.
James is scheduled for surgery tomorrow morning (1/24/18) with a 6 a.m. arrival at UMass Memorial Medical Center, University Campus. His surgeon is Dr. Vaezi. Assuming all goes as planned with the surgery he'll go to ICU and may be in hospital for up to a week. Chemo/radiation would start 6-weeks post-op depending on surgical outcome and recovery.
Removing the larynx entails a permanent stoma for breathing through the neck separating the breathing/eating pathways. The surgeon is planning on placing a voice prosthesis which will eventually allow James to speak with a light touch to the device located at the stoma. We have been told some people pick speech up quickly with the prosthesis while other have more trouble. Crossing fingers that James is the former!
We're envisioning a difficult and not pain free surgery but James is a strong person, he can do this. Post op as I'd mentioned he'll be in-patient in ICU at UMass with a feeding tube in place and instructed to rest no speech no swallowing to let his throat heal.
I'll add updates here throughout surgery and on to let you all know how he's doing! Thanks for sending love and healing vibes his way. xxoo Beth
Stage IV Laryngeal (we have been told) is not staged in the same was as other cancers in that it tends not to metastasize and there are good odds for survival in the advanced stage with full laryngectomy (removal of the larynx) followed by 7 weeks of combined chemo/radiation. The high staging is due to advanced tumor growth, the tumor is located within the left side of larynx extending vertically above/below and also infiltrating the cartilage.
During diagnosis and testing James had a PET scan to confirm that the cancer is localized. The surgeon has high hopes of removing everything affected although at least one lymph node was found to be "hot" which is in a difficult spot to remove surgically. If the affected lymph node can't be removed they will address it with aggressive radiation treatment.
James is scheduled for surgery tomorrow morning (1/24/18) with a 6 a.m. arrival at UMass Memorial Medical Center, University Campus. His surgeon is Dr. Vaezi. Assuming all goes as planned with the surgery he'll go to ICU and may be in hospital for up to a week. Chemo/radiation would start 6-weeks post-op depending on surgical outcome and recovery.
Removing the larynx entails a permanent stoma for breathing through the neck separating the breathing/eating pathways. The surgeon is planning on placing a voice prosthesis which will eventually allow James to speak with a light touch to the device located at the stoma. We have been told some people pick speech up quickly with the prosthesis while other have more trouble. Crossing fingers that James is the former!
We're envisioning a difficult and not pain free surgery but James is a strong person, he can do this. Post op as I'd mentioned he'll be in-patient in ICU at UMass with a feeding tube in place and instructed to rest no speech no swallowing to let his throat heal.
I'll add updates here throughout surgery and on to let you all know how he's doing! Thanks for sending love and healing vibes his way. xxoo Beth
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