Over the weekend..well, last Friday to be more precise, I hit the 3rd anniversary of my cancer surgery. Everything seems to be going well. Of course there are the usual bits and pieces that keep cropping up; some trouble swallowing, an unruly tongue, the slight bulge in my neck where the saliva glands were repositioned to, the white ‘flash’ on the other side of my neck that reminds me of the vascular rebuild (and possibly the cause of recent exertion headaches), the constant tightness in the right side shoulder muscles and the damned scars, too faint to be demonstrably outrageous, but not faint enough not to be slightly self conscious about. But on balance, I’m quite ecstatic with the results, and really have so little to complain about… So many who have gone through similar treatments I read of, or who I communicate with have not had the same success with the surgical option. Some lost more tissue, more bone. Some even lost their voice, the cancer silencing them. Me? Hell, I’m in fabulous shape.
I was subtly disappointed that I needed to remind my family of the date, but I didn’t push it because I find that I am a bit reluctant to celebrate the anniversary this time around. I suspect that I am suffering from ‘survivor’s guilt’. Perhaps it is about the survivors that I stay in touch with who aren’t doing quite so well. Perhaps it is because Larry Yachimec died from lung cancer just months ago. Michael Becker’s cancer has been deemed ‘terminal’, and no one really knows how long he will be with us. I am so fortunate to have walked away from the impact of this stage 4 carcinoma collision, but can’t bring myself to celebrate…
Monday, November 29, 2010
Friday, April 23, 2010
More on Akabutu's Mouthwash
An anonymous reader of my blog has provided a few more details on the composition of Akabutu's Mouthwash:
For a 240 ml Bottle:
Glycerin
Cortef 10 mg (cortesone)
Ratio-Nystatin susp 100,00 U/ML (anti fungal)
PMS-Lidocaine viscous 2% 100ml
Lens Plus 360ml (saline solution) which contains salt 0.9%
I hope that is helpful to some of you. Please note, however, that I have no real idea of the validity of this recipe and that using it is at your own risk. I also must caution you that I also have no understanding of copyright/patent infringements that its use may cause.
For a 240 ml Bottle:
Glycerin
Cortef 10 mg (cortesone)
Ratio-Nystatin susp 100,00 U/ML (anti fungal)
PMS-Lidocaine viscous 2% 100ml
Lens Plus 360ml (saline solution) which contains salt 0.9%
I hope that is helpful to some of you. Please note, however, that I have no real idea of the validity of this recipe and that using it is at your own risk. I also must caution you that I also have no understanding of copyright/patent infringements that its use may cause.
Saturday, April 10, 2010
Update on the vague reference to 'thrombosis'...
As you may recall from my entry from March, the radiologist who screened my head and neck CT ordered by Dr. Williams included a brief note that said: "A tiny/small soft tissue focus is present in the region of the right piriform sinus inferiorly. Absent contrast filling is noted within the transverse and sigmoid dural venous sinuses extending into the proximal internal jugular vein on the right side compatible with thrombosis." Now, as we all know (I didn't until I asked the Doctor, but we'll just pretend that you already know) a thrombosis is basically a blood clot. If you'll remember the rest of the previous post, I had tried to leverage the skeptical nature of my G.P., Dr. Randy Naiker... and it appears that I was successful.
Dr. Naiker had a conversation with Dr. Williams. Dr. Williams then had one of his vascular contacts review the films... He called this morning and left a message on our answering machine indicating that the concensus is that there is no thrombosis. He did go on to say something to the effect that it is fairly common (30%) in this type of surgery that a thrombosis of the vein draining the head may occur. He assured us that we (meaning me) have nothing to worry about. Everything is as it should be.
November of 2013 proves that the analysis in this previous paragraph turns out to be wrong. I suffered a stroke on November 5, 2013 as a result of a DAVF letting go. what's a DAVF? Look at the stroke entries in the blog, but essentially it is what this post describes and was intended to find and deal with in advance.
Dr. Naiker had a conversation with Dr. Williams. Dr. Williams then had one of his vascular contacts review the films... He called this morning and left a message on our answering machine indicating that the concensus is that there is no thrombosis. He did go on to say something to the effect that it is fairly common (30%) in this type of surgery that a thrombosis of the vein draining the head may occur. He assured us that we (meaning me) have nothing to worry about. Everything is as it should be.
November of 2013 proves that the analysis in this previous paragraph turns out to be wrong. I suffered a stroke on November 5, 2013 as a result of a DAVF letting go. what's a DAVF? Look at the stroke entries in the blog, but essentially it is what this post describes and was intended to find and deal with in advance.
Thursday, March 18, 2010
Time to 'Buddy Up!", boys and girls...
I’ve been reading some of the Facebook pages about oral and head and neck cancers, and I’m quite surprised at how many people don’t really know what is going on with their treatments, or the treatments of a loved one. And in way too many cases, people just don’t know how to cope with the entire situation. I seriously recommend that before you do much else in your battle with cancer, you select a ‘buddy’ to help you through this. Oh, please, don’t give me that macho I-can-do-this-on-my-own bullshit. The odds are really good that you’ve never been here before. How do you know that you can handle it? This isn’t a situation you can talk yourself out of, a bullet that you can dodge, a bar fight that you know you can win, or one where tears, a pout and stamping your cute little hoof will serve you well. Cancer won’t listen to your finely crafted rhetoric. This damn thing is an IED that’s already gone off and tossed you into a ditch. You’ve lost the bar fight. Not only did the heel on your shoe break when you stamped your little hoof, you’ve also broken a fingernail. So get someone to help get control of some of the harsh, day-to-day realities: you need to concentrate on surviving.
Choosing a ‘buddy’ really does require some serious thought on your part and the part of your spouse or significant other. You are in need of a ‘health care advocate’, not just a shoulder to lean on. In my wanderings around the Internet I’ve discovered that in the United States of America there are people and organizations that you can hire to be your advocate as you try to work your way through the complex insurance, diagnosis and treatment systems set up to deal with cancer. Even in Canada, sometimes it might help to have a professional looking after your best interests when dealing with the medical system, and your world in general, now that it is in such disarray. But you’ll probably stick with someone close to you to work with you as you navigate your way to restored health. Consider them a Cancer Survival Project Coordinator.
Be aware that your spouse/partner may not be the best person for this job. It may not be your parents, or a sibling, or even your best friend. All of these people love you, which could be a bit of a problem in context. Can they sit and just listen to the specialists without allowing hysteria to creep in? Are they able to figure out what questions need to be asked and when? Will they really help you to make the right decision, the best decision? Do they have the depth, the strength not to throttle an inconsiderate nurse, or an uncommunicative doctor, a completely dense pharmacist or an unaware acquaintance? Can they be cheery, diplomatic, analytical, and keep you, all of your appointments and your Personal Support Team organized? Do you trust them to speak for you to your family, your friends, your employer, your banker? Will they let you rage, weep, moan and then help you back to centre without patronizing you? Will they give you a kick in the ass when you deserve one? Keep looking for this is the type of person you need to be your Cancer Survival Project Coordinator.
Now, back to what brought this topic up… there are folks out there who have no idea what is happening to them, what is and is not being done for them, and what comes next.
Challenge everything; research, go on the Internet, get a second opinion. Demand answers.
There is no need to be rude about it, but make sure your doctors and advisors understand that you will not be taking things at face value. This is one of the crucial activities for your buddy; making sure that you are not slipping into complacency when it comes to your treatment regimen, that you are not blindly following the doctors’ advice. It is only a comment on human nature, but your doctors will treat you with a wee bit more respect and 'inclusion' if you've done your homework. It is the very rare health care practitioner who gets annoyed if you seem to be well on your way to expert status about what's trying to kill you. And if they are annoyed, you need to think seriously about finding another doctor.
Work out the ‘plan’ for treatment with your doctors, with your buddy’s help. What do we do now to get rid of the disease? Conferences with your doctors will provide you with most of the information you need to make informed choices for your treatment. Surgery? Rarely done on its own. Radiation? Before or after surgery? What about Chemotherapy? Adjunctive therapy? Alternate medical options? All of these need to be discussed, researched and scheduled. A plan helps you, your family and friends, and your employer focus on the future. And a good buddy helps it all stay on track.
Choosing a ‘buddy’ really does require some serious thought on your part and the part of your spouse or significant other. You are in need of a ‘health care advocate’, not just a shoulder to lean on. In my wanderings around the Internet I’ve discovered that in the United States of America there are people and organizations that you can hire to be your advocate as you try to work your way through the complex insurance, diagnosis and treatment systems set up to deal with cancer. Even in Canada, sometimes it might help to have a professional looking after your best interests when dealing with the medical system, and your world in general, now that it is in such disarray. But you’ll probably stick with someone close to you to work with you as you navigate your way to restored health. Consider them a Cancer Survival Project Coordinator.
Be aware that your spouse/partner may not be the best person for this job. It may not be your parents, or a sibling, or even your best friend. All of these people love you, which could be a bit of a problem in context. Can they sit and just listen to the specialists without allowing hysteria to creep in? Are they able to figure out what questions need to be asked and when? Will they really help you to make the right decision, the best decision? Do they have the depth, the strength not to throttle an inconsiderate nurse, or an uncommunicative doctor, a completely dense pharmacist or an unaware acquaintance? Can they be cheery, diplomatic, analytical, and keep you, all of your appointments and your Personal Support Team organized? Do you trust them to speak for you to your family, your friends, your employer, your banker? Will they let you rage, weep, moan and then help you back to centre without patronizing you? Will they give you a kick in the ass when you deserve one? Keep looking for this is the type of person you need to be your Cancer Survival Project Coordinator.
Now, back to what brought this topic up… there are folks out there who have no idea what is happening to them, what is and is not being done for them, and what comes next.
Challenge everything; research, go on the Internet, get a second opinion. Demand answers.
There is no need to be rude about it, but make sure your doctors and advisors understand that you will not be taking things at face value. This is one of the crucial activities for your buddy; making sure that you are not slipping into complacency when it comes to your treatment regimen, that you are not blindly following the doctors’ advice. It is only a comment on human nature, but your doctors will treat you with a wee bit more respect and 'inclusion' if you've done your homework. It is the very rare health care practitioner who gets annoyed if you seem to be well on your way to expert status about what's trying to kill you. And if they are annoyed, you need to think seriously about finding another doctor.
Work out the ‘plan’ for treatment with your doctors, with your buddy’s help. What do we do now to get rid of the disease? Conferences with your doctors will provide you with most of the information you need to make informed choices for your treatment. Surgery? Rarely done on its own. Radiation? Before or after surgery? What about Chemotherapy? Adjunctive therapy? Alternate medical options? All of these need to be discussed, researched and scheduled. A plan helps you, your family and friends, and your employer focus on the future. And a good buddy helps it all stay on track.
Monday, March 15, 2010
We need a Canadian push... Oral, head and neck cancer awareness
The Oral Cancer Foundation in the States is starting to make some serious headway in the awareness campaign to make people sit up and take notice of the need for early detection of Oral, Head and Neck cancers. Hell, look what early detection did for me! Leveraging the good work of the Head and Neck Cancer Alliance's 'walks' organized around the free screening program that is being promoted for a week in April, this year from April 12th 'til the 18th (2010), they are aggressively targeting the broad spectrum of the population who just don't get it, but might. Now that sounds a bit mean... it isn't that they don't get it, per se, but they don't understand that the risk of contracting an oral, head or neck cancer is no longer limited to those using tobacco or alcohol. Step through these videos: http://www.youtube.com/watch?v=4dvmRCcpnJM and then try the ones on this page: http://www.oralcancer.org/multimedia/index.htm . Hmmm... maybe you should do them in the reverse order.
In any event, there needs to be more participation during this awareness push from the cancer centres around North America, and Canada in particular. So far, I can only find three centres in Canada that have jumped on this particular bandwagon: The Nova Scotia Head and Neck Cancer Team in Halifax, the London Health Sciences Centre in Ontario, and Vancouver Coastal Health in BC. Our American counterparts have 156 centres signed up... the rest of the world has 26.
Now, if I can just figure out how to get the firm as involved in this one as they are in the Weekend to End Women's Cancers....
A violent few days...
The Monday has dawned as a bright, warmish (for March in northern Alberta!) day after a week and weekend of violence... both man-made and another example of Mother Nature pushing back.
Late last week in Ontario, just outside of Belleville, an eighteen year old boy murdered two people while trying to get at his estranged girlfriend. He killed the girl's mother, her younger sister and seriously injured the object of his affection before fleeing... The husband/father found the carnage when he returned home early in the morning from what I assume was a night shift.
Here in Edmonton a disgruntled employee, suspended from his job as a mechanic at a local car dealership for uttering 'racially charged remarks' went into the dealership one morning with a shotgun and started shooting. He killed one person, wounded others, and then killed himself. It is made that more poignant when one understands that one of the first responders, a female police officer, discovered that it was her husband which had been killed by the shooter.
As we begin to understand the background stories to the scenarios, we begin to see that there were certain checks and balances in place that may have identified the killers before the situation got to these levels, if they had been properly applied. Hindsight is 20/20 though, isn't it?
But this same sort of due diligence and care that could have saved 4 lives should also have been applied to a scenario which allowed Mother Nature's wrath to kill two people and hurt up to 30 others in the mountains just out side of Revelstoke. Even after being warned, even after avalanche alerts had been posted for a specific area, up to 200 people chose to ignore the evidence and rode their snowmobiles into the back country for a competition, the Big Iron Shoot-out on Boulder Mountain, challenging the mountain to push back. It did. People died.
There are warning signs. There are behaviours that we can identify if we're paying attention. Indicators are usually in place before human beings cause something irreversible to happen. People don't pay attention to the signs. Or, unfortunately, they become thrill junkies putting others at risk.
Late last week in Ontario, just outside of Belleville, an eighteen year old boy murdered two people while trying to get at his estranged girlfriend. He killed the girl's mother, her younger sister and seriously injured the object of his affection before fleeing... The husband/father found the carnage when he returned home early in the morning from what I assume was a night shift.
Here in Edmonton a disgruntled employee, suspended from his job as a mechanic at a local car dealership for uttering 'racially charged remarks' went into the dealership one morning with a shotgun and started shooting. He killed one person, wounded others, and then killed himself. It is made that more poignant when one understands that one of the first responders, a female police officer, discovered that it was her husband which had been killed by the shooter.
As we begin to understand the background stories to the scenarios, we begin to see that there were certain checks and balances in place that may have identified the killers before the situation got to these levels, if they had been properly applied. Hindsight is 20/20 though, isn't it?
But this same sort of due diligence and care that could have saved 4 lives should also have been applied to a scenario which allowed Mother Nature's wrath to kill two people and hurt up to 30 others in the mountains just out side of Revelstoke. Even after being warned, even after avalanche alerts had been posted for a specific area, up to 200 people chose to ignore the evidence and rode their snowmobiles into the back country for a competition, the Big Iron Shoot-out on Boulder Mountain, challenging the mountain to push back. It did. People died.
There are warning signs. There are behaviours that we can identify if we're paying attention. Indicators are usually in place before human beings cause something irreversible to happen. People don't pay attention to the signs. Or, unfortunately, they become thrill junkies putting others at risk.
Friday, March 12, 2010
Results...
On Monday of this week I met with my GP to go through the results of the leg x-ray that he had ordered some time ago, and to discuss the results of Holter monitoring that was performed just before Christmas. I also decided that I was going to raise the question about my CT scan, ask about the Synthroid dose (thyroid medication), and get the doctor to take a look at a bit of an anomaly in the skin on my forehead.
Holter Test: Now obviously there was no problem with the Holter or the doctor would have been on the phone to me almost immediately.
You'll remember that I am having some 'balance' issues. Dr. Williams has put it down to one of those chemotherapy side effects that they don't tell you about. Dr. Naiker has been in agreement, but he is also a closet skeptic: he ordered the Holter monitoring to ensure that there isn't a problem with blood flow to my head caused by the really invasive surgery I've been through to get rid of the oropharyngeal cancer. The end result of the Holter monitoring is that everything from that perspective is just fine. Over the 20 hours of monitoring, my heart beat something like 97,000 times. There were no issues diagnosed. Which then takes us back to the chemotherapy fallout as a potential reason for the balance problems.
Leg X-ray: This scan was done because of pain that I have been experiencing in my right thigh. I have been suspecting that I'm developing either a problem in my knee or my hip which is reflecting pain into my thigh. When the doctor pulled up the radiologist's report, the first question he asked me was: 'Were you a runner?'. Uh, yes... I ran distance from the time I was about 10 years old living in Guelph until the end of high school, making me 18. I stopped doing any serious running when I went off to University... and the only real running I have done recently has been a brief spurt at the local gym for the couple of years before I was diagnosed with cancer. Well, apparently it took its toll... and I should have continued running. We don't have any arthritis, or damage to the knee or the hip... what we have is calcification on the muscles. No serious problems. Just basic wear and tear.
Synthroid; after a quick discussion about a rather unpleasant and somewhat embarrassing side effect, we agreed that we would try knocking back the dosage from 100mg to 75mg. Oh, and it turns out that the last set of blood tests show that my TSH levels were perfect.
Forehead anomaly; I forgot to bring it up. The discussion about the CT scan completely distracted me. It is something that bears watching, however...
Neck and Chest CT Scan; Realizing that Dr. Williams did say my neck and chest CT was okay, and that there was nothing there to be concerned about, I just thought that I would leverage Dr. Naiker's skeptical nature and get him to review the results with me. Dr. Naiker printed out the actual report and gave it to me. We discussed it. I'm providing the text of the findings here. The red coloured text is my interpretation (and discussion with Dr. Naiker). The blue belongs to the radiologist.
Findings:An osteotomy is noted involving the body of the mandible anteriorly on the right side which has been transfixed with a plate and multiple screws. This is where they broke my jaw for the mandibular swing, then bolted it back together.
Multiple surgical clips are present in the region of the right palatine tonsil compatible with transmandibular/transoral resection of a squamous cell carcinoma. An associated free flap is noted. There is evidence for a bilateral neck dissection along with resection of the right submandibular gland and possibly resection of the right sternocleidomastoid muscle. Obviously the guy has either read the file and is merely corroborating it, or he's really good! Additionally, there is evidence for a left submandibular gland transfer procedure into the submental region. This is evidence that they moved my saliva gland from its original location to low in the left portion of my jaw. A tiny/small soft tissue focus is present in the region of the right piriform sinus inferiorly. Absent contrast filling is noted within the transverse and sigmoid dural venous sinuses extending into the proximal internal jugular vein on the right side compatible with thrombosis. This made us both sit up and take notice. A 'thrombosis' is a clot. Is this a bit of scar tissue from the surgery? The location described indicates that it may be... and therefore may be responsible for my balance issues. The soft tissues of the neck are otherwise unremarkable. Scarring is noted at the lung apices. Note is made of congenital incomplete fusion of the posterior neural arch of C1. Okay, so that the beginning of the cervical spine, and, according to Dr. Naiker is not that unusual. To the extent visualized, the orbits, the paranasal sinuses, the mastoid air cells and the brain parenchyma are unremarkable. Other than the scar tissue, nothing sounds ominous. But the report goes on with a statement of findings.
IMPRESSION: The radiologist's caps, not mine.
1. Findings compatible with transmandibular and transoral excision of a squamous cell carcinoma in the region of the right palatine tonsil with free flap reconstruction and bilateral neck dissection as well as left submandibular gland transfer procedure as stated above. A soft tissue focus is present with the right piriform sinus inferiorly which may simply reflect secretions, however, tumor recurrence remains a possibility. Further assessment under direct visualization may be helpful. This is the bit that Dr. Williams mentioned during our phone call on a week ago. He had performed the 'visualization' when we met, and we had talked about the increased mucous production, so he is not concerned.
2. Findings compatible with thrombosis involving the transverse and sigmoid dural venous sinuses as well as the proximal internal jugular vein on the right side. This is the possible scar tissue again.
As for what is the piriform sinus, I've lifted an explanation and a drawing from Wikipedia for you:
"On either side of the laryngeal orifice is a recess, termed the piriform sinus (also piriform recess, pyriform sinus, or piriform fossa), which is bounded medially by the aryepiglottic fold, laterally by the thyroid cartilage and hyothyroid membrane. The fossae are involved in speech.
The term "piriform," which means "pear-shaped," is also sometimes spelled "pyriform" (as in the diagram on this page.)
Deep to the mucous membrane of the piriform fossa lie the recurrent laryngeal nerve as well as the internal laryngeal nerve, a branch of the superior laryngeal nerve.[1] The internal laryngeal nerve supplies sensation to the area, and it may become damaged if the mucous membrane is inadvertently punctured.
While accurate, the diagram is misleading in that the piriform sinus is not a subsite of the larynx. Rather, it is a subsite of the hypopharynx. This distinction is important for head and neck cancer staging and treatment.
Dr. Naiker arranged to have a chat with Dr. Williams about these two 'issues'. He then had his nurse call me and let me know that everything is as we thought, and that there are no worries.
All of this essentially means that I can continue to say that I am now two years cancer free!
Holter Test: Now obviously there was no problem with the Holter or the doctor would have been on the phone to me almost immediately.
You'll remember that I am having some 'balance' issues. Dr. Williams has put it down to one of those chemotherapy side effects that they don't tell you about. Dr. Naiker has been in agreement, but he is also a closet skeptic: he ordered the Holter monitoring to ensure that there isn't a problem with blood flow to my head caused by the really invasive surgery I've been through to get rid of the oropharyngeal cancer. The end result of the Holter monitoring is that everything from that perspective is just fine. Over the 20 hours of monitoring, my heart beat something like 97,000 times. There were no issues diagnosed. Which then takes us back to the chemotherapy fallout as a potential reason for the balance problems.
Leg X-ray: This scan was done because of pain that I have been experiencing in my right thigh. I have been suspecting that I'm developing either a problem in my knee or my hip which is reflecting pain into my thigh. When the doctor pulled up the radiologist's report, the first question he asked me was: 'Were you a runner?'. Uh, yes... I ran distance from the time I was about 10 years old living in Guelph until the end of high school, making me 18. I stopped doing any serious running when I went off to University... and the only real running I have done recently has been a brief spurt at the local gym for the couple of years before I was diagnosed with cancer. Well, apparently it took its toll... and I should have continued running. We don't have any arthritis, or damage to the knee or the hip... what we have is calcification on the muscles. No serious problems. Just basic wear and tear.
Synthroid; after a quick discussion about a rather unpleasant and somewhat embarrassing side effect, we agreed that we would try knocking back the dosage from 100mg to 75mg. Oh, and it turns out that the last set of blood tests show that my TSH levels were perfect.
Forehead anomaly; I forgot to bring it up. The discussion about the CT scan completely distracted me. It is something that bears watching, however...
Neck and Chest CT Scan; Realizing that Dr. Williams did say my neck and chest CT was okay, and that there was nothing there to be concerned about, I just thought that I would leverage Dr. Naiker's skeptical nature and get him to review the results with me. Dr. Naiker printed out the actual report and gave it to me. We discussed it. I'm providing the text of the findings here. The red coloured text is my interpretation (and discussion with Dr. Naiker). The blue belongs to the radiologist.
Findings:An osteotomy is noted involving the body of the mandible anteriorly on the right side which has been transfixed with a plate and multiple screws. This is where they broke my jaw for the mandibular swing, then bolted it back together.
Multiple surgical clips are present in the region of the right palatine tonsil compatible with transmandibular/transoral resection of a squamous cell carcinoma. An associated free flap is noted. There is evidence for a bilateral neck dissection along with resection of the right submandibular gland and possibly resection of the right sternocleidomastoid muscle. Obviously the guy has either read the file and is merely corroborating it, or he's really good! Additionally, there is evidence for a left submandibular gland transfer procedure into the submental region. This is evidence that they moved my saliva gland from its original location to low in the left portion of my jaw. A tiny/small soft tissue focus is present in the region of the right piriform sinus inferiorly. Absent contrast filling is noted within the transverse and sigmoid dural venous sinuses extending into the proximal internal jugular vein on the right side compatible with thrombosis. This made us both sit up and take notice. A 'thrombosis' is a clot. Is this a bit of scar tissue from the surgery? The location described indicates that it may be... and therefore may be responsible for my balance issues. The soft tissues of the neck are otherwise unremarkable. Scarring is noted at the lung apices. Note is made of congenital incomplete fusion of the posterior neural arch of C1. Okay, so that the beginning of the cervical spine, and, according to Dr. Naiker is not that unusual. To the extent visualized, the orbits, the paranasal sinuses, the mastoid air cells and the brain parenchyma are unremarkable. Other than the scar tissue, nothing sounds ominous. But the report goes on with a statement of findings.
IMPRESSION: The radiologist's caps, not mine.
1. Findings compatible with transmandibular and transoral excision of a squamous cell carcinoma in the region of the right palatine tonsil with free flap reconstruction and bilateral neck dissection as well as left submandibular gland transfer procedure as stated above. A soft tissue focus is present with the right piriform sinus inferiorly which may simply reflect secretions, however, tumor recurrence remains a possibility. Further assessment under direct visualization may be helpful. This is the bit that Dr. Williams mentioned during our phone call on a week ago. He had performed the 'visualization' when we met, and we had talked about the increased mucous production, so he is not concerned.
2. Findings compatible with thrombosis involving the transverse and sigmoid dural venous sinuses as well as the proximal internal jugular vein on the right side. This is the possible scar tissue again.
As for what is the piriform sinus, I've lifted an explanation and a drawing from Wikipedia for you:
"On either side of the laryngeal orifice is a recess, termed the piriform sinus (also piriform recess, pyriform sinus, or piriform fossa), which is bounded medially by the aryepiglottic fold, laterally by the thyroid cartilage and hyothyroid membrane. The fossae are involved in speech.
The term "piriform," which means "pear-shaped," is also sometimes spelled "pyriform" (as in the diagram on this page.)
Deep to the mucous membrane of the piriform fossa lie the recurrent laryngeal nerve as well as the internal laryngeal nerve, a branch of the superior laryngeal nerve.[1] The internal laryngeal nerve supplies sensation to the area, and it may become damaged if the mucous membrane is inadvertently punctured.
While accurate, the diagram is misleading in that the piriform sinus is not a subsite of the larynx. Rather, it is a subsite of the hypopharynx. This distinction is important for head and neck cancer staging and treatment.
Dr. Naiker arranged to have a chat with Dr. Williams about these two 'issues'. He then had his nurse call me and let me know that everything is as we thought, and that there are no worries.
All of this essentially means that I can continue to say that I am now two years cancer free!
Monday, March 01, 2010
Following up the Medical Receptionist post
This morning I was finally able to get through to my GP's office, and I spoke with the woman who had left the cryptic message on my home answering machine. I was gentle but firm in letting her know the consternation which that sort of the call can trigger. She won't be doing it again, hopefully. She also agreed to re-order the contact numbers in my file so that my cell phone gets called before the house phone.
I also asked her to tell me which damned test the doctor wanted to discuss, and she told me that it was, indeed, the x-ray of my right thigh. So, we also set up an appointment for Monday next to review the leg x-ray.
She actually did thank me for pointing out the distress that the Friday afternoon calls can cause, and resolved to be careful in future with all patients.
I also asked her to tell me which damned test the doctor wanted to discuss, and she told me that it was, indeed, the x-ray of my right thigh. So, we also set up an appointment for Monday next to review the leg x-ray.
She actually did thank me for pointing out the distress that the Friday afternoon calls can cause, and resolved to be careful in future with all patients.
And the results are in...
After a brief conversation this morning with Dr. Williams, my oncological surgeon, I can tell you that the Neck and Chest CT scan is NOT showing anything that one should be worried about. There is some decrease in secretion at the top of the esophagus, but Dr. Williams' visual exam (with that damned scope thingee) showed nothing. The radiologist did point out a tiny granuloma, but indicated that it was likely age related, and not linked to the cancer, or anything else worth being concerned about.
Dr. Williams did ask about the cough that started this round of scans: is it worse? is it better? I told him that it is no worse, but I’m not sure if it has gotten any better. He offered me the option of the ‘wait-and-see’ approach, or the ‘call-the-pulmonary-guy’ approach. We joked a bit about ‘the happy wife means a happy life’ and I asked him to go ahead and call the pulmonary guy. G. would have been absolutely furious if she knew that I had turned down any sort of diagnostic.
While I had him on the phone, I asked the doctor to pull up the file on the leg x-ray that was done... and he did a quick look, and indicated that there was nothing there to be concerned about. I will be meeting with my GP on Monday next for an in depth review of that one.
We're still good!! I've made it two years now.
Dr. Williams did ask about the cough that started this round of scans: is it worse? is it better? I told him that it is no worse, but I’m not sure if it has gotten any better. He offered me the option of the ‘wait-and-see’ approach, or the ‘call-the-pulmonary-guy’ approach. We joked a bit about ‘the happy wife means a happy life’ and I asked him to go ahead and call the pulmonary guy. G. would have been absolutely furious if she knew that I had turned down any sort of diagnostic.
While I had him on the phone, I asked the doctor to pull up the file on the leg x-ray that was done... and he did a quick look, and indicated that there was nothing there to be concerned about. I will be meeting with my GP on Monday next for an in depth review of that one.
We're still good!! I've made it two years now.
Sunday, February 28, 2010
Telling the doctors the whole truth...
My son-in-law is a ex-footballer... having played Canadian-style football in one of those men's house leagues for the guys who could never dedicate their lives to the game, but still had enough talent to make the provincial all-stars, or something similar. (Sidebar: the son-in-law used to play with one of the members of Kevin Martin's gold medal winning curling squad, who was the backup quarterback on their team!) As such, he had his fair share of injuries. One of them, the ubiquitous knee injury, has come back to haunt him. He recently had a MRI to work out the final diagnosis and build out a treatment strategy.
We got to babysit the granddaughter while they were at the diagnostic imaging unit. And, as the lad was leaving for the hospital, I made a pointed effort to impress on him the importance of filling out the questionnaire completely, and answering all questions honestly and completely.
And it is a good thing that he followed my advice.
When asked if he had ever had metal in his eyes, he thought about it, and replied that he had a bit of a 'challenge' at his part time job a couple of years ago that resulted in a metal sliver in his eye, which he self-extracted. (Young guys and their 'indestructible' attitudes; no safety glasses)
The radiology techs delayed the MRI and immediately did a medial head x-ray, and thought they saw 'something'. They then did a complete radial series (you know: the one where the machine head tracks from a point in line with your nose all the way around to the same point at the back of your head).
They discovered that the lad has a piece of metal lodged in his orbital socket. And, of course, it needs to come out.
It's a darned good thing that a) he told the whole truth, and b) that the MRI that was needed was only on his knee.
We got to babysit the granddaughter while they were at the diagnostic imaging unit. And, as the lad was leaving for the hospital, I made a pointed effort to impress on him the importance of filling out the questionnaire completely, and answering all questions honestly and completely.
And it is a good thing that he followed my advice.
When asked if he had ever had metal in his eyes, he thought about it, and replied that he had a bit of a 'challenge' at his part time job a couple of years ago that resulted in a metal sliver in his eye, which he self-extracted. (Young guys and their 'indestructible' attitudes; no safety glasses)
The radiology techs delayed the MRI and immediately did a medial head x-ray, and thought they saw 'something'. They then did a complete radial series (you know: the one where the machine head tracks from a point in line with your nose all the way around to the same point at the back of your head).
They discovered that the lad has a piece of metal lodged in his orbital socket. And, of course, it needs to come out.
It's a darned good thing that a) he told the whole truth, and b) that the MRI that was needed was only on his knee.
Saturday, February 27, 2010
Medical Receptionists, please take note.
There's a certain cruelty in finding a message on your telephone answering machine when you get home on a Friday evening after a particularly odd day's business from the receptionist at your family doctor's office, especially when she has stammered her way through the message that they've received some test results and, if there has been no follow up from your oncologist, the doctor would like to see you in his office.
It's a Friday.
End of business.
Not open again until Monday.
No way to get in touch with her to ask for clarification, to ask which results from which test.
No way to get in touch with the doctor unless you wave the emergency flag. And even then there's another doctor on call this weekend who is not familiar with your case.
And your wife has hardly slept through the night, risen early on Saturday, and by 9 AM has determined not only the diagnosis, but what the prognosis is, and has announced it to both daughters.
And your eldest daughter is a nurse who is calling the house every fifteen minutes with updates on how she has been trying, unsuccessfully, to get the doctor's personal cell phone number, further freaking out your wife.
And the youngest daughter has decided that babysitting your grand daughter Saturday night may not be such a good idea anymore.
And your wife is having second thoughts about having friends for dinner on Sunday.
Cruel. Just plain cruel.
Just a word to the medical receptionists out there: please don't do this. If I leave you my cell number, please use it! Call me! Leave messages on my cell phone! Don't give my wife and children (drama queens, the bunch of them!) the excuse to wind themselves up. And for crying out loud, don't leave that sort of message on a Friday!
It's a Friday.
End of business.
Not open again until Monday.
No way to get in touch with her to ask for clarification, to ask which results from which test.
No way to get in touch with the doctor unless you wave the emergency flag. And even then there's another doctor on call this weekend who is not familiar with your case.
And your wife has hardly slept through the night, risen early on Saturday, and by 9 AM has determined not only the diagnosis, but what the prognosis is, and has announced it to both daughters.
And your eldest daughter is a nurse who is calling the house every fifteen minutes with updates on how she has been trying, unsuccessfully, to get the doctor's personal cell phone number, further freaking out your wife.
And the youngest daughter has decided that babysitting your grand daughter Saturday night may not be such a good idea anymore.
And your wife is having second thoughts about having friends for dinner on Sunday.
Cruel. Just plain cruel.
Just a word to the medical receptionists out there: please don't do this. If I leave you my cell number, please use it! Call me! Leave messages on my cell phone! Don't give my wife and children (drama queens, the bunch of them!) the excuse to wind themselves up. And for crying out loud, don't leave that sort of message on a Friday!
Friday, February 26, 2010
Avoid Dehydration -- Drink!
I must admit that I am probably the last person who should be talking about dehydration... I do not keep my fluid levels topped up properly at the best of times. During my cancer treatments I was even worse at it. In fact, while I was doing the combined radiation and chemo therapies the lead of my oncology team, Dr. Jha, finally got so frustrated with my inadequate fluid intake that he made taking two x one litre bags of fluid intravenously daily a mandatory requirement for the last two weeks of my radiation treatments. Now that was a bit embarrassing! Imagine taking up a bed for a couple of hours in a cancer treatment centre just because you can't be bothered to drink a couple of litres of water on your own. Okay, in my defense, I didn't want to take anything by mouth during that time period... hmmmm. Not much of a defense when my recovery was at risk.
Here's the advice: Drink. Drink WATER. And some juices, just being careful with which ones of those you choose. Apparently pineapple juice has properties that will undo all the good some medications will. You need to do the research, as in most situations during your treatments.
Why is dehydration such a big deal? Well, I don't quite understand all the ins and outs, but water is the major component in the body. It is the delivery system to the body's cellular structure. A lack of water, or dehydration can be responsible for depression, loss of libido, lupus flare ups, joint pain and a host of other things. Don't be complacent and dismiss this lightly: Dehydration can kill... there's something like 2.2 million children dying every year from the dehydration caused by diarrhoea. The elderly and the sick are equally at risk. You don't have to be lying prostrate in the desert sun somewhere to be seriously affected by a lack of water.
This goes back to my whining about knowing your body and what it is doing. You need to pay attention to what your body is telling you. For instance;
Arthritis: made worse by lack of water in your joints.
Heartburn: an indicator of a lack of water in the upper GI tract. Its a prime indicator that your body is headed for serious dehydration. The thing is that chemo therapy makes you so sick that you may miss that indicator.
Low Back Pain: can be an indicator that your spinal column and all that connective tissue needs a top up.
Heart Pain/Angina: indicating that your heart and lung tissues are not getting the water that they need.
Headaches (and Migraines): Think about the kind of headache that you get from a hangover, and you'll have a feel for it. You need to get some more water to the brain and eyes, and get more electrolytes back into your system.
Digestive tract pain: colitis-like symptoms, constipation can be caused by dehydration.
Diabetes: adult onset diabetes can be triggered by extended periods of dehydration. The body uses water as a delivery vehicle for insulin to cells.
High Cholesterol: indicator of potential hydration issues.
High blood pressure: hypertension can be a simple case of dehydration. Hypo tension means that you are usually in serious trouble.
I know that it's tough to drink, let alone eat, when you're dealing with the pain in your mouth and throat when you swallow, and the nausea from the chemo, and those indescribable sensations in your mouth from the radiation, but you really do need to stay hydrated. Drink water. Drink some of those better sports drinks that replenish salts and electrolytes. Take a look at the list above. How many of those things are going to be masked by the effects of your treatments? If you're really having trouble with getting your fluids down, raise the red flag with your treatment team before they find symptoms of potentially dangerous side effects to dehydration.
Here's the advice: Drink. Drink WATER. And some juices, just being careful with which ones of those you choose. Apparently pineapple juice has properties that will undo all the good some medications will. You need to do the research, as in most situations during your treatments.
Why is dehydration such a big deal? Well, I don't quite understand all the ins and outs, but water is the major component in the body. It is the delivery system to the body's cellular structure. A lack of water, or dehydration can be responsible for depression, loss of libido, lupus flare ups, joint pain and a host of other things. Don't be complacent and dismiss this lightly: Dehydration can kill... there's something like 2.2 million children dying every year from the dehydration caused by diarrhoea. The elderly and the sick are equally at risk. You don't have to be lying prostrate in the desert sun somewhere to be seriously affected by a lack of water.
This goes back to my whining about knowing your body and what it is doing. You need to pay attention to what your body is telling you. For instance;
Arthritis: made worse by lack of water in your joints.
Heartburn: an indicator of a lack of water in the upper GI tract. Its a prime indicator that your body is headed for serious dehydration. The thing is that chemo therapy makes you so sick that you may miss that indicator.
Low Back Pain: can be an indicator that your spinal column and all that connective tissue needs a top up.
Heart Pain/Angina: indicating that your heart and lung tissues are not getting the water that they need.
Headaches (and Migraines): Think about the kind of headache that you get from a hangover, and you'll have a feel for it. You need to get some more water to the brain and eyes, and get more electrolytes back into your system.
Digestive tract pain: colitis-like symptoms, constipation can be caused by dehydration.
Diabetes: adult onset diabetes can be triggered by extended periods of dehydration. The body uses water as a delivery vehicle for insulin to cells.
High Cholesterol: indicator of potential hydration issues.
High blood pressure: hypertension can be a simple case of dehydration. Hypo tension means that you are usually in serious trouble.
I know that it's tough to drink, let alone eat, when you're dealing with the pain in your mouth and throat when you swallow, and the nausea from the chemo, and those indescribable sensations in your mouth from the radiation, but you really do need to stay hydrated. Drink water. Drink some of those better sports drinks that replenish salts and electrolytes. Take a look at the list above. How many of those things are going to be masked by the effects of your treatments? If you're really having trouble with getting your fluids down, raise the red flag with your treatment team before they find symptoms of potentially dangerous side effects to dehydration.
Wednesday, February 24, 2010
Another CT Scan
We're now twenty-seven months out from the original cancer surgery. We've quietly slipped by the 2nd anniversary for the start of the courses of radiation and chemotherapy.
This morning I had a CT scan of my neck and chest, complete with the dye injection, and a standard chest x-ray. This really doesn’t have that much to do with my cancer history directly, but rather it is a reaction to an ongoing problem that I seem to have developed. I am suffering from a form of gastroesophageal reflux, which is when the contents of your stomach rise back up your esophagus at inconvenient times, like when you burp, or when you lay down, or when you’re eating; the esophagus suddenly spasms, hiccup-like. Well, it is not so much ‘suffering’ from it as being inconvenienced by it. I am using a generic version of the drug Previcid (lansoprazole) to slow or control the production of stomach acid, so I really don’t feel the burning sensation that the stomach acids should be causing. And, for the most part, the 'events' are happening while I sleep. I keep a little book of all of my physical idiosyncracies and have documented several reflux events where it woke me from my sleep. But the real indicator that made the doctor suggest the CT scan is an on-again, off-again cough, a little throat clearing sort of cough: annoying because it is not quite a hearty phlegm clearing hack, but too much to be a tickle that can be placated with a drink or a lozenge.
To his credit, the good doctor didn’t try to bombard this symptom with another type of drug to try to make it go away.
Dr. William's main concern is that the overnight backup may be damaging the epiglottis. It's time to just have a look to see what’s happening in that area.
He has suggested that results of the CT will either put the subject to rest and we’ll just keep using the Pervacid/lansoprazole, or have me scurrying off to a pulmonary specialist. I still don’t understand why this is in the realm of the pulmonary docs, but apparently it is.
Now the unspoken stuff that goes along with gastroesophageal reflux is that it can be a precursor to a laundry list of ailments which is topped off with esophageal carcinoma. And, of course, now that I have a demonstrated predisposition to the squamous cell variety, I really think that he’s being quietly prudent in his investigation: he didn't come right out and say what he's looking for. The other unspoken correlation is between celiac disease and esophageal cancers.
Oh, aren’t we just having so much fun!
The actual appointment went brilliantly… a little bit of a delay, but it wasn’t really significant enough to mention. The ladies who looked after me were stellar examples of nursing and radiological staff; buoyant, chatty, fun, and generally happy. I was complimented on my glasses, and on my cologne. It wasn’t quite flirting, but the interest in me, rather than the affliction, felt good.
This morning I had a CT scan of my neck and chest, complete with the dye injection, and a standard chest x-ray. This really doesn’t have that much to do with my cancer history directly, but rather it is a reaction to an ongoing problem that I seem to have developed. I am suffering from a form of gastroesophageal reflux, which is when the contents of your stomach rise back up your esophagus at inconvenient times, like when you burp, or when you lay down, or when you’re eating; the esophagus suddenly spasms, hiccup-like. Well, it is not so much ‘suffering’ from it as being inconvenienced by it. I am using a generic version of the drug Previcid (lansoprazole) to slow or control the production of stomach acid, so I really don’t feel the burning sensation that the stomach acids should be causing. And, for the most part, the 'events' are happening while I sleep. I keep a little book of all of my physical idiosyncracies and have documented several reflux events where it woke me from my sleep. But the real indicator that made the doctor suggest the CT scan is an on-again, off-again cough, a little throat clearing sort of cough: annoying because it is not quite a hearty phlegm clearing hack, but too much to be a tickle that can be placated with a drink or a lozenge.
To his credit, the good doctor didn’t try to bombard this symptom with another type of drug to try to make it go away.
Dr. William's main concern is that the overnight backup may be damaging the epiglottis. It's time to just have a look to see what’s happening in that area.
He has suggested that results of the CT will either put the subject to rest and we’ll just keep using the Pervacid/lansoprazole, or have me scurrying off to a pulmonary specialist. I still don’t understand why this is in the realm of the pulmonary docs, but apparently it is.
Now the unspoken stuff that goes along with gastroesophageal reflux is that it can be a precursor to a laundry list of ailments which is topped off with esophageal carcinoma. And, of course, now that I have a demonstrated predisposition to the squamous cell variety, I really think that he’s being quietly prudent in his investigation: he didn't come right out and say what he's looking for. The other unspoken correlation is between celiac disease and esophageal cancers.
Oh, aren’t we just having so much fun!
The actual appointment went brilliantly… a little bit of a delay, but it wasn’t really significant enough to mention. The ladies who looked after me were stellar examples of nursing and radiological staff; buoyant, chatty, fun, and generally happy. I was complimented on my glasses, and on my cologne. It wasn’t quite flirting, but the interest in me, rather than the affliction, felt good.
Wednesday, February 03, 2010
Hey, you! Get your H1N1 flu shot... stop being a dink about it!
At approximately 0800 on February 4, 2010 doctors will be taking a twenty-four year old woman of east Indian descent off life support. Her parents have arrived from Toronto, her brother from Calgary. This lovely young woman, one of our acquaintances, has no brain activity; her kidneys failed her, her lungs stopped functioning effectively, and then her heart stopped.
At this time they haven't told anyone what is responsible, but the chatter going around is that it started off with a bout of H1N1. There will likely be an autopsy...
H1N1 kills.
Get your damned shots.
At this time they haven't told anyone what is responsible, but the chatter going around is that it started off with a bout of H1N1. There will likely be an autopsy...
H1N1 kills.
Get your damned shots.
Tuesday, February 02, 2010
Americans kidnapping Haitian children?
In the aftermath of the Haitian earthquake a group of ten fundamentalist Baptist American do-gooders snuck across the border from the Dominican Republican, convinced temporary and permanent caregivers (including the parents!) of 33 Haitian children to allow the children to be loaded onto a bus and driven out of Haiti. The caregivers, and even the children believed that they were going off to 'summer camp' or to 'boarding school'... based on flyers/leaflets that the team of ten were passing out. But also within their possession where other flyers that detailed their goal to remove 100 children from Haiti and take them first to the Dominican Republic, and then back to the US for adoption. Not all the children were orphans...
At this point there is growing debate over what to do about the ten Americans. My answer is simple; jail them. If they are part of a child trafficking organization, then they deserve to be incarcerated. If they are simply arrogant Americans discounting the laws of Haiti, then they deserve to do time to teach them respect for another nations' laws and people. If they are simply mis-guided, over-zealous Christian fundamentalists, they need to spend time in jail to learn some humility. And if they are simply do-gooders who never considered the implications of their actions, then they need to spend time behind bars reflecting on their collective stupidity.
At this point there is growing debate over what to do about the ten Americans. My answer is simple; jail them. If they are part of a child trafficking organization, then they deserve to be incarcerated. If they are simply arrogant Americans discounting the laws of Haiti, then they deserve to do time to teach them respect for another nations' laws and people. If they are simply mis-guided, over-zealous Christian fundamentalists, they need to spend time in jail to learn some humility. And if they are simply do-gooders who never considered the implications of their actions, then they need to spend time behind bars reflecting on their collective stupidity.
Yesterday's lab tests...
This is another one of those posts where all I'm really trying to say is that I am so lucky to be looked after by the Canadian health care system in Alberta.
Yesterday at noon I managed to get out of the office, get to a local lab where I had made an appointment, had my blood taken, walked across the parking lot to the medical imaging clinic, and, without an appointment, had the x-rays of my right thigh done. I was back online, working, within one hour. And it cost me nothing more than my monthly healthcare premiums and time. Oh, wait... This is Alberta. There aren't any healthcare premiums!
The blood work ordered included 'general chemistry' which apparently covers sodium, potassium, chloride and CO2. I have no idea why Dr. Williams needs to see that stuff... but hey, he's the doctor. He also ordered a test of the creatinine in my blood as a way to check kidney function prior to having a chest CT scan done. Why? Well, if the kidneys are not functioning at optimal levels, they can't give you any of the dyes, which may/may not diminish the usefulness of the scan.
And as a hedge, the doctor ordered a TSHB (TSH progressive testing) test just to ensure that the thyroid levels are where they need to be...
The x-ray was a truly wonderful thing: a walk-in experience that took half an hour from walking in the front door, to walking out again. The lab I used, which happens to be the lab that did the ultrasound on my neck which started this ride in the summer of 2007, has gone almost completely 'digital'. There is no x-ray film. There are sensors build into the x-ray table which convert the radiation bombardment into video/computer imagery. The somewhat lively x-ray technician who took the shots of my knee/thigh/hip told me that it was actually possible that the results of the x-ray would be on my doctor's computer desktop before I managed to get dressed and get back onto the street.
And once again, I have no complaints about how I am being handled in the healthcare system.
Yesterday at noon I managed to get out of the office, get to a local lab where I had made an appointment, had my blood taken, walked across the parking lot to the medical imaging clinic, and, without an appointment, had the x-rays of my right thigh done. I was back online, working, within one hour. And it cost me nothing more than my monthly healthcare premiums and time. Oh, wait... This is Alberta. There aren't any healthcare premiums!
The blood work ordered included 'general chemistry' which apparently covers sodium, potassium, chloride and CO2. I have no idea why Dr. Williams needs to see that stuff... but hey, he's the doctor. He also ordered a test of the creatinine in my blood as a way to check kidney function prior to having a chest CT scan done. Why? Well, if the kidneys are not functioning at optimal levels, they can't give you any of the dyes, which may/may not diminish the usefulness of the scan.
And as a hedge, the doctor ordered a TSHB (TSH progressive testing) test just to ensure that the thyroid levels are where they need to be...
The x-ray was a truly wonderful thing: a walk-in experience that took half an hour from walking in the front door, to walking out again. The lab I used, which happens to be the lab that did the ultrasound on my neck which started this ride in the summer of 2007, has gone almost completely 'digital'. There is no x-ray film. There are sensors build into the x-ray table which convert the radiation bombardment into video/computer imagery. The somewhat lively x-ray technician who took the shots of my knee/thigh/hip told me that it was actually possible that the results of the x-ray would be on my doctor's computer desktop before I managed to get dressed and get back onto the street.
And once again, I have no complaints about how I am being handled in the healthcare system.
Sunday, January 31, 2010
Akabutu's Mouthwash
As part of my resolve to reinvigorate this blog, I've been probing the access logs to find out who has been reading the material while it (the blog) has remained static. It doesn't actually tell me the 'who' part, but does give me an indication of the geographic origin of the connection, and the search term used to find the blog. For instance, I can tell you that someone in Singapore was studying the forearm flap photos on Jan. 10, 2010, and that someone in Belgium was having a look at my comments on the effects of Cisplatin on tinnitus. The number one search term that is pointing people to these pages is "Akabutu's Mouthwash". That wondrous concoction has developed an international reputation. I ran my own search against the term in Google and was fascinated to see how many listings there are, and in what context. The common thread, however, seems to be chemotherapy.
I really wish that I could post the recipe here, but I truly don't know it... if you follow the other Akakutu links in the blog you'll find hints as to what may be in it.
In the meantime, have your oncologist/doctor/dentist contact the Cross Cancer Institute in Edmonton, AB, Canada to get the recipe... I'm pretty sure that they'll share.
I really wish that I could post the recipe here, but I truly don't know it... if you follow the other Akakutu links in the blog you'll find hints as to what may be in it.
In the meantime, have your oncologist/doctor/dentist contact the Cross Cancer Institute in Edmonton, AB, Canada to get the recipe... I'm pretty sure that they'll share.
Saturday, January 30, 2010
Cancer Treatment Update
I got distracted from blogging in June of 2009... just prior to my next round of appointments to check on the state of my health. I had a series of appointments and tests in August/September. The two year anniversary of the surgery to remove the tumor was November 26, 2009. And I had an appointment with Dr. Williams, oncological surgeon extraordinaire on January 28, 2010. Okay, so where are we?
In mid June I did the obligatory blood test to ensure that the thyroid meds were actually being effective. The previous tests had been in late April after the checkup where Dr. Williams had suggested that the thyroid was indeed under performing. There were no significant issues, we assume, as the appointment to discuss the results was scheduled for the first week of August with my GP, Dr. Randy Naiker. Dr. Naiker is very good... if there was anything out of the ordinary, he would have scheduled me in earlier.
I went to the appointment with a list of items that I thought may be of interest... this is one of the things that I've started to do; make lists of how I'm perceiving my body's behaviours. So, the things that I brought to the table were:
But the good doctor decided that we wouldn't just accept the 'damage caused by chemotherapy' rationale as the reason for the vertigo. Now this is where I get a bit annoyed at myself for not recording some of the discussions we had. Did you know that there is a difference between 'dizzyness' and 'vertigo'? Well, apparently there is... and when I do some research and jog my memory about the conversation we had, I'll let you know all about it. In the meantime, he decided that we would be very proactive. He ordered a neck/carotid Ultrasound, and a Holter Monitor test. He wanted to rule out the possibility that the scar tissue from the surgery might be inhibiting blood flow.
Annoyingly, when the lab called me to give me the dates, the ultrasound was scheduled for Dec. 23rd, and the Holter for Nov. 30th. Remember that this was the first week of August: I was so frustrated that I badgered the lab receptionist who was trying to schedule the tests until I got the ultrasound moved up to later in August! And to be entirely fair, the young sounding woman on the other end of the phone actually called a competing lab group to get me that appointment. Unfortunately, there was nothing she could do with the Holter test.
The pain in the right thigh mystified the doctor. Again, to be proactive, he gave me a chit for an x-ray.
Here's where I admit to being a 'bad patient'. First of all, I tried to do the x-ray twice... but the wait was too long both times... and then I forgot about!!! When I remembered around the date of the Holter test, I couldn't find the requisition.
And, when I got the call reminding me that I had the Holter Monitor test scheduled, I actually made them change it to a later date because it was inconvenient... I had neglected to enter it into my calendar and booked a series of training sessions over top of it. I finally got the Holter in just prior to Christmas.
There was no phone call after the ultrasound. There has been no phone call after the Holter. I think that it is pretty safe to assume that we don't have a blood flow issue here...
Going into my recent appointment with Dr. Williams, I generated the updated list:
It turns out that one of the 'treatments' for reflux is really just a mitigation strategy. Previcid, for instance, really only changes the acids that cause the serious discomfort and damage to a 'base' (damn... gotta start remembering my chemistry!) . Okay. And that means what? Well, it means that you can still be having the back flow happen, but you don't feel it! In my little book of incidents that I keep, I have recorded several breakthrough reflux incidents... the inference is that there are more, but I haven't felt them. Dr. Williams suggested that we need to consult with a pulmonary specialist to see if there's anything weird going on... that might be caused by aspiration of reflux derived fluids. So the damned coughing may be caused by reflux. Heavy sigh. I just shake my head.
I'm headed into another round of tests: blood test (keratin), followed by chest CT, and then on to whatever the pulmonary specialist has in mind.
At least there is no sign of recurrence of the cancer! This is a major bonus!
Oh, and the doctor graciously wrote me up a requisition to replace the lost thigh x-ray chit.
In mid June I did the obligatory blood test to ensure that the thyroid meds were actually being effective. The previous tests had been in late April after the checkup where Dr. Williams had suggested that the thyroid was indeed under performing. There were no significant issues, we assume, as the appointment to discuss the results was scheduled for the first week of August with my GP, Dr. Randy Naiker. Dr. Naiker is very good... if there was anything out of the ordinary, he would have scheduled me in earlier.
I went to the appointment with a list of items that I thought may be of interest... this is one of the things that I've started to do; make lists of how I'm perceiving my body's behaviours. So, the things that I brought to the table were:
- continuing vertigo
- pain in my right thigh
- continued deterioration of my handwriting
- weakness/shakiness in my right hand and arm
- deterioration in my vision
- changes in my 'swallow'
But the good doctor decided that we wouldn't just accept the 'damage caused by chemotherapy' rationale as the reason for the vertigo. Now this is where I get a bit annoyed at myself for not recording some of the discussions we had. Did you know that there is a difference between 'dizzyness' and 'vertigo'? Well, apparently there is... and when I do some research and jog my memory about the conversation we had, I'll let you know all about it. In the meantime, he decided that we would be very proactive. He ordered a neck/carotid Ultrasound, and a Holter Monitor test. He wanted to rule out the possibility that the scar tissue from the surgery might be inhibiting blood flow.
Annoyingly, when the lab called me to give me the dates, the ultrasound was scheduled for Dec. 23rd, and the Holter for Nov. 30th. Remember that this was the first week of August: I was so frustrated that I badgered the lab receptionist who was trying to schedule the tests until I got the ultrasound moved up to later in August! And to be entirely fair, the young sounding woman on the other end of the phone actually called a competing lab group to get me that appointment. Unfortunately, there was nothing she could do with the Holter test.
The pain in the right thigh mystified the doctor. Again, to be proactive, he gave me a chit for an x-ray.
Here's where I admit to being a 'bad patient'. First of all, I tried to do the x-ray twice... but the wait was too long both times... and then I forgot about!!! When I remembered around the date of the Holter test, I couldn't find the requisition.
And, when I got the call reminding me that I had the Holter Monitor test scheduled, I actually made them change it to a later date because it was inconvenient... I had neglected to enter it into my calendar and booked a series of training sessions over top of it. I finally got the Holter in just prior to Christmas.
There was no phone call after the ultrasound. There has been no phone call after the Holter. I think that it is pretty safe to assume that we don't have a blood flow issue here...
Going into my recent appointment with Dr. Williams, I generated the updated list:
- a dry cough that doesn't seem to have a trigger; happens irregularly. Can sometimes be full on, body wracking and can also be quite light
- reflux seems to be pretty much under control
- sometimes I develop severe esophageal spasms when eating, if I don't keep the fluids flowing
- right thigh pain; I admitted to having forgotten to get the x-ray and losing the requisition
- generally saliva production is good; sufficient for day-to-day, but not good enough to eat without lots of liquids
- mucous buildup in my sinuses
- tongue is much better, although some of the autonomic responses are slowed, and the strength is still not there
- my weight is up to 177 lbs.
- hearing is back to about 90% of pre-chemo levels
It turns out that one of the 'treatments' for reflux is really just a mitigation strategy. Previcid, for instance, really only changes the acids that cause the serious discomfort and damage to a 'base' (damn... gotta start remembering my chemistry!) . Okay. And that means what? Well, it means that you can still be having the back flow happen, but you don't feel it! In my little book of incidents that I keep, I have recorded several breakthrough reflux incidents... the inference is that there are more, but I haven't felt them. Dr. Williams suggested that we need to consult with a pulmonary specialist to see if there's anything weird going on... that might be caused by aspiration of reflux derived fluids. So the damned coughing may be caused by reflux. Heavy sigh. I just shake my head.
I'm headed into another round of tests: blood test (keratin), followed by chest CT, and then on to whatever the pulmonary specialist has in mind.
At least there is no sign of recurrence of the cancer! This is a major bonus!
Oh, and the doctor graciously wrote me up a requisition to replace the lost thigh x-ray chit.
Eight months later...
I was just sitting here counting on my fingers and realized that it has been eight months since I posted anything here... notice that I say 'posted': I have written some stuff, but it just seemed a so trite and pointless that I let it languish in a digital limbo, and sort of lost interest in the whole 'blogging' experience. And the loss of interest could be construed as a bit odd given some of the events that have affected me and mine...
It seems about time to get back on track. 'Got a lot of things to comment on... there is the birth of my granddaughters (yes, TWO of them within 5 weeks of each other!), a number of world class disasters, the Canadian political scene at the federal, provincial and municipal levels, my work life, the evolution of technology, Scotch, and of course my ongoing battle with cancer. Although I must admit that the cancer thing isn't much of a battle anymore. It really has degenerated into silly little 'informational' skirmishes...
It seems about time to get back on track. 'Got a lot of things to comment on... there is the birth of my granddaughters (yes, TWO of them within 5 weeks of each other!), a number of world class disasters, the Canadian political scene at the federal, provincial and municipal levels, my work life, the evolution of technology, Scotch, and of course my ongoing battle with cancer. Although I must admit that the cancer thing isn't much of a battle anymore. It really has degenerated into silly little 'informational' skirmishes...
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