Don Kent's Cancer Journey
The following entries are consolidated from Don Kent's Facebook posts and emails to family providing health updates during his experiences with throat cancer, specifically dealing with the results of a tracheotomy and PEG stomach feeding tube. I am publishing them here in hopes that his chronological story of the process that he went through will provide some first-hand experience details for others going through similar cancer journeys.
Don's original treatments for squamous cell cancer were in 2007, and included 35 radiation treatments and two rounds of chemotherapy followed by a left neck dissection.
“All was good until about 2014 when I developed osteoradionecrosis (ORN) in the left mandible. Two summers of hyperbaric oxygen therapy and a debridement followed with no significant improvement. It was then decided that I would have mandible reconstruction using a fibular free flap once the mandible fractured or the pain became intolerable. In the autumn of 2016, I developed a persistent sore throat, which by March 2017 had deteriorated significantly. I was having difficulty breathing, was aspirating food and drink, and sleep was constantly interrupted.” - from Don's Blog
April 26, 2017
Some of you have requested an update on my health following my appointment with my ENT oncologist. Here it is.
My general symptoms are:
Very raspy and hoarse voice...I have to yell to be heard which creates a very raw/sore throat. This has worsened significantly in just the last few days.
Choking and coughing while eating and drinking:
Eating is a very slow process since my throat is very constricted, i.e. 45 mins. to eat a slice of pizza
I frequently reach a point where I have to cease eating due to choking and coughing.
Potentially aspirating food/drink into my lungs creating difficulty in catching my breath when stressed, i.e. playing tennis
Weight loss is at about 10% - the good news is that I'm down to 194lbs but I'm trying to slow the loss now by modifying my diet (soft foods) and using supplements such as Boost etc.
The good news is that the doc scoped my throat and indicated that it is unlikely that this is being caused by a malignancy (i.e. cancer) and is most likely chronic effects of the treatment of my throat cancer from 2007. He indicated that these symptoms are becoming more common these days since cancer survivors are living significantly longer than in the past - 10 years (so far) for me.
The next step is to see a speech therapist for a barium swallow test to determine the mechanics of my swallowing and to ascertain if I am aspirating food and drink. This will be followed by therapy to improve my swallowing. Further treatment will be based on the swallow testing but I may need to have my oesophagus dilated to widen my throat (currently I can only swallow very small portions of food and often require liquid to ease the swallowing). This would likely entail a series of treatments which would be repeated periodically. Other non-specified treatments may be required based on the test results (not discussed). It would not be unexpected to require a stomach feeding tube at some point to maintain proper nutrition.
On a separate but related issue, I will see the oral surgeon on May 10th to ascertain if a debridement of the dead bone in my mandible is feasible. My ENT oncologist is not optimistic about this possibility. If not, a free bone flap will likely be required sometime in the future to resolve the osteoradionecrosis (ORN). This will be left as long as possible (until the jaw fractures or the pain becomes unbearable) since it would be a major surgery with significant risks of failure due to the previous radiation and surgery. The downsides, if unsuccessful, would have significant quality of life issues. The ENT doc mentioned that he has other "hammers" available but did not discuss the specifics until we are sure what we are dealing with.
For the last couple of years, the ORN has been my primary concern. Not so much now...I need to resolve my swallowing issues first and the ORN is a related but secondary concern.
April 26, 2017
We tried heading out to lunch with friends yesterday. It was very difficult to socialize as I couldn't make myself audible over the background noise in the restaurant. Barb had to "translate" most of my conversation for the other couple and my throat was very sore from shouting to be heard. I may try again tomorrow with my old work crew but it will be challenging. However, I am enjoying a G&T as we speak.
June 20, 2017
Another long, boring health update from Don...suffer through it cupcakes!
Well, the modified barium swallow test and preliminary results did not quite meet our expectations as to long term treatment/cure etc. Note that these are very preliminary results and have not been discussed with the ENT yet.
The test confirmed that my epiglottis is not functioning properly resulting in the trachea not being sealed properly and some aspiration into the lungs. Duh...I've been telling them that since March. This is very similar to Warren's problem (buddy in Florida who went through similar issues a year ago). Food is collecting above the epiglottis and in the oesophagus and not being swallowed properly. It is presumed that these are chronic effects of radiation from 2007. Scarring in the throat, epiglottis, oesophagus and voice box prevent the muscles from coordinating and performing the swallow properly.
Several functions are impacted:
When drinking, I tend to aspirate some fluid, usually at the end of the swallow when the flow is minimal. I tend to hack/cough as the fluid trickles down the trachea since it tickles. The aspiration will most likely result in lung infections/pneumonia which can be treated with antibiotics.
When eating, food is collecting above the epiglottis and in the oesophagus. I hack and cough while eating until I end the meal with having to spit up a mouthful. I frequently wash down the small chewed portions with water but at some point this loses it's effectiveness and I can't swallow and I have to cough up whatever is in the process of being swallowed. I then wait a couple of hours before eating again as my throat is sore by this point. This limits my portion sizes and I must eat frequently (i.e. 1/2 sandwich, 1/2 cup spaghetti etc.). I have migrated to a softer diet and use Boost or similar supplements to crank up the calories and other nutritional requirements.
My voice is very raspy and difficult to hear. They presume that this is caused by scarring on the voice box/larynx. This makes communications difficult and near impossible in all but a silent environment. Phone calls are particularly problematic...Barb is my translator when available.
The constriction in the voice box from the scarring (and likely some lung impediments due to aspiration) makes breathing challenging. I tire very quickly (i.e. climbing a flight of stairs) and have very low energy levels. It probably didn't help when losing 30 pounds, but I have ceased weight loss now. My weight has stabilized at 186/187 pounds.
Phlegm tends to accumulate in the back of my throat when horizontal, i.e. while sleeping, and my sinuses congest. Thus I tend to breath primarily through my mouth. This creates a very dry mouth (note that I had saliva glands removed during surgery back in 2007) with a wad of phlegm rattling around and impeding breathing. I frequently cease breathing and then start hacking/coughing. I awaken frequently (every 20 minutes to 2 hours) and get up to expel the accumulation. My difficulty swallowing in association with the dry mouth prevents this from being swallowed normally. I am constantly tired during the day due to sleep deprivation and I nap sporadically.
Unfortunately there does not seem that there is much that can be done to alleviate the side effects. The speech pathologist basically said that my speech/voice will not improve. It's a good thing that I took up guitar and was not relying on singing for my music career. In the long term I will likely need a tracheotomy for breathing (I think that this will effectively kill all speech without the use of a voice synthesizer) and a feeding tube (PEG) for eating and drinking.
My tennis days are done I'm sure. At least I can still golf (well what passes for golf with my limited talent - more properly termed "whack - fuck" as I shank shots all over the course).
Ah, the "big C", the gift that keeps on giving. This recounting likely sounds worse than the reality. The good news is that I won a free replay in our Lotto Max lottery this past week...woo hoo! It wasn't quite the $55M that I was anticipating but perhaps I set my expectations a tad high :)
They are still planning on the fibula free flap surgery to rebuild my mandible this summer, likely in July. I will have a tracheotomy and feeding tube for the surgery. Perhaps they will make these permanent then rather than temporary, just for the surgery. I will meet with the ENT and speech pathologist again over the next couple of weeks.
June 23, 2017
We are back from appointments with the speech pathologist and my ENT. I think that they finally heard me and are reprioritizing my issues. My swallowing and breathing issue is now first on the agenda with the mandible reconstruction taking a back seat for now. The latter will be scheduled for later in the year.
1. Speech Pathologist
During the swallow testing I tried samples of liquids and foods of various consistencies. In all cases there was evidence of aspiration with little improvement with thicker liquids. She noted that my epiglottis is very rigid and fails to protect the trachea like it should during swallowing, hence the aspiration which will inevitably lead to lung infections/pneumonia if left untreated. She recommended that a stomach feeding tube (PEG) be inserted immediately. She also noted that my larynx/voice box must be scarred (from radiation) which limits proper inhalation when breathing.
The ENT scoped my throat again and confirmed the scarring damage of the voice box, epiglottis etc. He confirmed the need for the PEG as well as a tracheotomy to improve breathing etc. He indicated that having the tracheotomy will be like flipping a switch; my sleep issues, tiredness and lethargy will all nearly instantly disappear. One correction from the previous email. Speech is possible with a tracheotomy; you simply cover the opening with your finger when speaking and the exhaled air will flow through the voice box as normal. There is also a "valve" device that can do the same for all exhalations. My voice quality will not improve though; what you hear now is what you get unless it worsens due to further scarring.
These two minor surgeries have been scheduled for July 5th and I will be hospitalized for a few days.
Recent perspective changes converted these procedures from dreaded to highly desired. With these, I should be able to return to a relatively normal life.
July 6, 2017
Hey folks - I'm finally awake long enough to provide a quick health update. I am now sporting two fine body protrusions in the form of a tracheostomy and a feeding tube. You can all have your body pircings and tats, I am upping the game and demanding utility as well.
Short interruption there to let the nurse have her way with me. The tracheotomy was first. I had to have this done while "awake" although I remember nothing. They were unable to intubate me - some nonsense about my thingy being too small. Now, those are fighting words so I offered to go toe-to-toe with her until I realized that she had cheated and plied me with happy pills and even standing would be a challenge.
They might have put me under when installing the feeding tube, at least that was the original plan. Since good things come in threes, they decided to throw in a free "scopy" of some kind since they were already in there. I am sure that this was just another contributor to my discomfort. Note to self - don't trash talk with the surgical teams - the odds are stacked with the house.
They dumped me in the post surgical unit for a few dreamy hours and then transferred me to a ward to be greeted by my new nurse, Peter. Now, hold on a second here - two things:
All these years we've paid for semi-private accomodations and yet all hospital stays have been in wards. Note to self - get a refund.
During pre-admitting I had explicitly requested hot chick nurses only. I had even provided some links to photos of acceptable candidates such as Mila Kuris, Mirranda Kerr etc. So what gives with Peter? I was just about to get this issue addressed when Barb and Mom arrived so I decided to defer this confrontation until later. They got me settled in and then split for home and dinner. Meanwhile, it is nearing 5am here and I'm still waiting for anything provided non-intraveneously. Well, that's all for now, I'll have a nap and dream of those nurses that I had requested.
July 14, 2017
Hi Folks - here's another health update, just in case you are not yet bored to tears.
I was discharged from TOH on Wednesday, a week after my surgeries. The PEG feeding tube is easily maintained although it is very time consuming to feed sufficiently to maintain the necessary nutrition and get medications in. This takes about 6 hours daily
The tracheostomy is a pain in the neck (haha) as a lot of mucous builds in the trachea which leaks out the canulla and requires frequent suctioning and cleaning. Hopefully this will diminish as the stoma and trachea heal from the surgery. Breathing is quite restrictive so I get breathless after minimal activity. I may have this checked next week since they changed to this style of trach (which facilitates speech) on the day of discharge. The previous type was much less restrictive. Or, the difficulty might be due to an infection that I picked up before being discharged.
CCAC/LIHN have provided supplies and equipment for the first few weeks but then I will need to purchase my own. I need an IV stand (for bolus feeding), and possibly a suction machine and aerosol compressor (applies humidity to the air intake). The formula (Isosource) is provided almost free by the province ($2 fee is covered by insurance).
I have tried eating a bit orally but most of it seems to be aspirated and comes out the trach - not a pretty sight, trust me. It seems that my days of eating/drinking orally are done. One of these days I'll try gin & tonic through the PEG!
Anyway, it is good to be home. I'm ready for summer to begin ?
July 16, 2017
To celebrate our 29th anniversary, Barb and I spent a romantic night in the emergency room at the Kemptville Hospital due to my extreme difficulty breathing. They were eventually able to remove a large blood/mucous plug that restored my respiration. Do I know how to show a girl a good time or what? Luv ya Barb!
Aug 2, 2017
Another fun night and day spent at the emergency room, this time at the Ottawa Hospital. Again I lost my ability to breath due to a plug in the trach. Barb called 911 but I had cleared it by the time that the ambulance arrived. They checked my vitals but would only transport me to the Kemptville Hospital so Barb and I headed into Ottawa at about 11pm. They released me about 1pm this afternoon after lots of testing (scoping, chest X-ray, CT scan etc.). I was treated by one of the ENT surgeons who had performed my tracheotomy and he gave me some advise on how to deal with the issue in case it happens again. I really like this doc as he seems to be very straight forward and discusses the various options in laymen terms and is very thorough in ordering tests to back his assessment. Needless to say, Barb is wiped after spending 12+ hours in an uncomfortable chair while I napped in bed. I'm hopeful for a more restful night tonight. Bon soir.
Aug 30, 2017
Aug 30th Meeting Summary:
Dr O changed my trach to the type used previously in hospital. Breathing does seem easier and less laborious, particularly when stressed by activity. Golfing posed no problem on Aug. 31st. Speech is more difficult and I generally use the PMV speaking valve to facilitate speech. There is too much air leakage around the cannula when being plugged with fingers only.
Dr. O is highly reticent to perform both the fibular free flap with mandibular reconstruction and the laryngectomy simultaneously. I had requested this since:
Dr O had previously indicated that my next surgery would likely preclude any further neck surgeries. He refers to my neck as a "hostile environment".
I would like to regain as much functionality as possible wrt. oral feeding/drinking and speech.
Each surgery would take 6-7 hours for a total of up to 14 hours if both were performed. Dr. O has never done both simultaneously. In fact he feels that the free flap with mandibular reconstruction alone is extremely high risk. The left side of my neck is too hard and the vascular system has been compromised by radiation and surgery. If connecting the free flap to the artery below the neck, it will likely be too compressed by tight tissue to provide good blood flow. The bone graft will likely fail (25-50% risk of failure). As well, the skin covering the wound will be extremely tight and will unlikely stay closed leaving an open wound. There are significant risks of heart attack, stroke, DVT (blood clot) and pulmonary embolism during the surgery.
Dr. O suggests performing the laryngectomy with a couple of options:
Remove the dead mandible section (mandibulectomy) and let it swing (3 of his patients currently have this but they are much older. 2 of these are fine aesthetically while the third is problematic). This would preclude chewing.
Remove the dead mandible section and install a titanium plate. This would allow minimal chewing but will last less than 5 years before it will become loose and require removal. Then the jaw will have to swing free.
These would use a chest wall flap to rebuild the hole left when the larynx is removed. BTW - without a voice box, natural speech is impossible. He has sent a referral to Collette (speech pathologist) to investigate the use of an electrolarynx (speech synthesizer) to enhance my speech capability. Note that my voice is getting progressively worse and speech more difficult.
The problem with either option is that I will, at best, be able to eat soft food only (i.e. solids must be blended) as I would have no, or very limited, bite/chewing capability.
Dr. O will provide a referral to an ENT surgeon in Toronto, Dr. G, who is less risk adverse and might consider performing both of my desired surgeries. Instead of doing a fibular free flap, he would likely use bone and tissue from the back, a scapular free flap. This could result in normal oral intake including hard food if successful. Speech would still be addressed with an electrolaynx. Dr. G is VERY busy so we can expect a lengthy delay prior to a consult. This is my preference but I recognize that there is higher risk. This will need to be assessed with Dr. G.
We subsequently investigated Dr. G a bit. His scapular free flap claims a 2% "hardware failure" in mandible reconstruction versus 16% for the fibular free flap according to one of his study papers. Toronto definitely is not convenient if the surgery is done there.
Sept 3, 2017
Hi folks. Here is my latest health update:
My ENT changed my trach to the type I had used previously while in hospital. Breathing does seem easier and less laborious, particularly when stressed by activity. Golfing posed no problem earlier this week. Speech is more difficult and I generally use the PMV speaking valve to facilitate speech.
My ENT is highly reticent to perform both the fibular free flap with mandibular reconstruction and the laryngectomy simultaneously. I had requested this since:
My ENT had previously indicated that my next surgery would likely preclude any further neck surgeries. He refers to my neck as a "hostile environment".
I would like to regain as much functionality as possible wrt. oral feeding/drinking and speech.
He indicated that the risks are excessive to perform both surgeries simultaneously, both for complications and for failure of the bone graft. He has suggested that he perform the laryngectomy to remove the larynx and a mandibulectomy to remove the necrotic portion of the mandible. He may or may not install a plate to reconnect the mandible. This option would only support a soft diet.
My ENT will provide a referral to an ENT surgeon in Toronto, who is less risk adverse and might consider performing both of my desired surgeries. Instead of doing a fibular free flap, he would likely use bone and tissue from the back, a scapular free flap. This could result in normal oral intake including hard food if successful. We await the consult with the second surgeon prior to making a decision on how to proceed.
In either case, speech would be addressed with an electrolaynx, a device that you press to your throat that provides speech synthesis. We have been referred to a speech pathologist to get this going now since my voice is deteriorating.
That's all folks - enjoy the long weekend!
Oct 19, 2017
This is my health update following the appointment with the ENT surgeon in Toronto:
Dr. G and a couple of residents had a pretty good look through a scope, read the clinical notes and reviewed a couple of CT scans. They have concluded that more investigation is required before they can determine the best course of action.
Dr. G did say that both the surgeries that I was requesting can be done although he hasn't done them together for my specific situation. He has done them in the past for patients who have had cancer in both the mandible and larynx. He did say that even if he did both the mandible reconstruction and the laryngectomy that it would be unlikely that I could return to solid food. He indicated that it is near impossible to get the teeth properly aligned following the surgery which would prevent proper chewing. This may be complicated by the fact that my jaw is already fractured. He pointed out the fracture on the CT scan as well as noted that the bone erosion has already proceeded completely through the mandible. He said that the fracture isn't particularly noticeable since I don't currently chew so it has remained in place - No more cheek pats thanks Mom!
He has suggested that the investigation phase be handled in Ottawa and once the information is available that the surgery options be revisited. He will contact Dr. O in the next couple of days to plan this.
Oct 27, 2017
We met with the local ENT today. He will perform a flexible endoscopy likely on Nov. 7th to try to locate any possible tumour. If located they will biopsy it. We will then meet again to discuss treatment options. My mandible is definitely fractured and it has now slipped a bit and juts out into my cheek. This leaves me looking a bit strange; a swollen jowl on the left side and a swollen neck (edema) on the right side.
Nov 15, 2017
We met with my ENT this morning and reviewed my options and the plan for my surgeries.
I went for an endoscopy last week to search for a tumour that might be causing my throat problems. No tumour was located. However, the docs were only able to get very limited visibility as my larynx is so fixated/fused that they were unable to penetrate it. They tried several different methods but all failed. We spoke briefly with my ENT following the procedure about the next steps.
Have another CT scan to see if there have been any significant changes since August.
Plan to perform the two surgeries (mandible reconstruction via free fibular flap and laryngectomy). They will proceed with the surgeries assuming that no tumour is found. If a tumour is found when the throat is opened, they will then decide how to proceed. If operable, they would take it out. If not, they would simply close the wound (biopsy it presumably). Further treatment options would then need to be assessed and discussed.
There will be three surgical teams; my ENT, a plastic surgeon (who I have already met) and another ENT has been added. The second ENT has been added due to the complexity and lengthy durations of the surgeries (12-14 hours). I will likely have to meet with the second ENT prior to the surgery which is tentatively scheduled for early January but is dependent on getting their three schedules aligned and the availability of the OR. The OR's get busy in January following the Christmas slow down. I will also have another CT scan prior to the surgeries.
They will start with the laryngectomy since this will quickly reveal if there is a tumour present (note that although CT imaging suggests the possibility of a tumour my ENT feels that I am far too healthy to have a cancer that is causing such severe problems without other noticeable side effects). If resectable, they will remove it; otherwise they will just close me up and send me home. Assuming no tumour, they will do the laryngectomy and then do the fibular free flap and mandible reconstruction. They may also have to do a pectoral flap to get tissue etc. to close the hole left when the larynx is removed. If they have problems grafting the fibula into the mandible, they will simply insert a metal plate. This would last somewhat less than 5 years assuming a primarily liquid diet. I can expect to spend 2+ weeks in the hospital if all goes well; longer if there are complications.
There are many risks with these surgeries that could lead to complications. Additional tissue grafts may be required if areas fail to heal properly. And, there are general surgical risks.
Well, that pretty much sums things up. Let's get 'er done!
Dec 1, 2017
Woohoo, I finally have a surgery date, Jan. 29th! Bring it on...?
Jan 30, 2018
Don's Health Update,
My surgeries did not go well yesterday. They discovered a large tumour when they opened my throat. It extends from my voice box to around my spine making it inoperable. They cancelled the planned laryngectomy and mandible reconstruction. I was aware that this was a possibility although a low probability. There are no curative treatment options. I'll try to post a pic of my latest incisions. My face is very swollen so I look pretty scary. The hotties won't be chasing me for a while! Anyway, it is what it is...my turn to deal with it.
Feb 7, 2018
Discharged from TOH and back home. CCAC nurse will visit tomorrow.
Feb 15, 2018
Well I got to spend Valentine's Day evening in the hospital. It seems that i got a mucous plug that prevented me from breathing. After a quick visit to the Kemptville hospital I got a fast ride to TOH. There I eventually hacked out a huge plug. I even managed to hit a student ENT. He learned a lesson about trach patients.
April 19, 2018
For those of you that might be unaware I have been pursuing medical assistance in dying since receiving my terminal cancer diagnosis at the end of January. Well, that day is tomorrow, April 20, 2018. The procedure will be done at my home. Barb, my mom and my two sisters will be present to support me and one another. There will be no funeral or memorial. That is my choice.
My doctor has warned that with my cancer that complications can arise very quickly and that my quality of life could deteriorate rapidly. He had already broached the subject of preparing for residence in a convalescent home or similar institution. And, I have already had some significant bleeding from my throat which continued for several days. He said it may have developed an ulceration which broke off and bled or that the tumour has encroached on a blood vessel which could bleed profusely if ruptured. The latter scenario would be very unpleasant.
I have had a good life, not quite as long as I had hoped, but generally quite satisfying with ample support from family and friends. I enjoyed almost 30 years married to Barb and had a decent career in electronics design that helped us to retire early. I was able to spend several winters in Florida following retirement which were thoroughly enjoyable, meeting and socializing with many new friends.
I appreciate and cherish our friendships. Take care and have fun as you continue your journey in life.
Note from Don's Family
In Don's final months after being diagnosed with terminal cancer, Don became a great champion for medical assistance in dying and provided Dying with Dignity Canada insights into his final journey through a blog series. Links to the blog posts provided below. Here is our family's update on Don's final day.
"Don posted yesterday that April 20th would be his last day in our world. He left us peacefully today at 10:24 am, surrounded by his Mom, sisters, and held tight in Barb’s arms, with Deep Purple’s ‘Child In Time’ playing loud in the background. Don left this world exactly as he wanted to go, after more than a ten year battle with cancer. He’s created a huge legacy in his last few months, promoting medical assistance in dying through his blog. Today, we experienced first-hand the results of his campaign, as he slipped away quietly, peacefully, and on his own terms.
His is loved by many and will be deeply missed, but know that his road was well traveled and his end was gentle. Don treasured his time with his friends and community. Thanks to all of you who have shown your support, love and kindness to Don and our family throughout this journey."
For information about Don's last months, please refer to his blog series that is published through the Dying with Dignity organziation.
Blog Post: My Terminal Cancer Diagnosis
Blog Post: My Plans to Access Medical Assistance in Dying
Blog Post: What I've Learned About Assisted Dying So Far
Blog Post: The loss of my quality of life
Blog Post: The night I lost consciousness and ended up back at the hospital
Blog Post: My fast-approaching end
Blog Post: ‘This is Don Kent, signing off’