My sister Leslie had offered to take me in and bring me home. She arrived two minutes late (as she predicted). At lease there was some levity.
I gave her the key to the house and had her log into my computer to find the special file. I had her do everything since she might have to do this solo. She got in and logged into the document and quickly perused it before closing and logging off. We were back on schedule and got into here car where she couldn't find her keys. "I must have left them in your house", she said. Well good now we can see how you do getting into the house. No problems. She found here keys right next to the PC.
We got in the car and began the voyage to Worcester. We were doing well until I got us lost. I checked the GPS and found that we were not far from our destination. We made good time despite the travel wrinkle.
We arrived at the parking garage and quickly found a spot. We followed the signage to the surgical check in. By this time Leslie need to use the facilities. So while she did that I found out exactly where I needed to go. I went looking fro Leslie, and once I found here I said we need to go to elevator D to the second floor. We saw signs for elevators A, B and C, but couldn't find D. Tons of people walking around and we made eye contact with someone who works there. She was extremely pleasant and helpful. She almost walked us to the elevator. I've found this pleasant attitude to be the norm. Everyone is/has been really nice.
Reaching floor two, they were already expecting me. Someone had called there and said I was on the way. Leslie and I were directed to the waiting area were I was called not long after. Leslie was invited in and accompanied my. I met with many nurses and doctors while there. I was told that Dr. Schanzer prefers his patients to be clean (shaved). So I was informed that all hair below my nipples and above my knees had to go. It is what it is. I felt like a sheep being shorned at the rodeo. Eventually it was done. Leslie commented on who long it had taken. A few more doctors arrived and Dr. Schanzer being one of them. He marked me up with a felt tippped pen and instructed the nurse to give me an EKG. So after attaching may electrodes the test was quickly done and I guess I passed. One of the doctors had to attach three IV ports to my poor battered arm. Not my favorite part. At some point, Leslie was informed that she would have to leave. After a good luck kiss, she said she was on the way back to my house to siphon all my money out. Levity is always good under these conditions.
More professionals came and went, then finally I was informed that it was time. I was wheeled into the OR and and the anesthesiology team prepped me for my knock out. Can't remember anything from here until I woke up.
More to come!
Thursday, March 30, 2017
"We said our goodbyes, ah the night before" [The Beatles]
I had spent a number of days following my pre-op just putting my affairs in order. Not only was this an impetus to clean the house, it made me look at any and all documentation, policies, bank accounts, and email accounts I have. My father used to say, "If every I should leave you..." [From Camelot] when he wanted you to pay attention to those things someone other than he needed to know in the event of an untimely passing. I guess the apple doesn't fall far from the tree, for I created a folder on my PC with a password protected document meant for my sister's eyes. Here she would find just about everything that's needed to be known, "If ever I should leave you".
On Monday, I said goodbye to anyone I was dealing with; friends; family; and band members. Of course everyone said that I would be fine, but did appreciate my being candid about my health. I also made sure that any pending bills were paid. Was I over-worrying? Yes, but my mother always said you have to worry just enough.
I was given a check list that needed to be completed Monday night into Tuesday morning. I had special antiseptic sponges to shower with and a horrible tasting mouth rinse. I knew I had to be up and at 'em early, but once again, I got little sleep.
More to come!
On Monday, I said goodbye to anyone I was dealing with; friends; family; and band members. Of course everyone said that I would be fine, but did appreciate my being candid about my health. I also made sure that any pending bills were paid. Was I over-worrying? Yes, but my mother always said you have to worry just enough.
I was given a check list that needed to be completed Monday night into Tuesday morning. I had special antiseptic sponges to shower with and a horrible tasting mouth rinse. I knew I had to be up and at 'em early, but once again, I got little sleep.
More to come!
Saturday, March 25, 2017
Green light for the EVAR (EndoVAscularRepair)
The latest chapter of my challenge is becoming real. On Thursday, March 23, 2017, I was given the approval to "proceed to go" [for fans of Monopoly].
I had my pre-op appointment with the anesthesiologist for my Triple A (Abdominal Aortic Anuerysm) endo-vascular procedure schedule for early next week. My appointment was at the UMass Memorial campus in Worcester. I'm happy that the weather cooperated and the bright sunshine provided positivity and hope. UMass Medical is huge, really huge. But, thankfully I was able to find parking in a lot right outside of the building I was visiting. [Reasonable price too - $3].
Not knowing where exactly to go, I was guided by exceptional signage and arrived 25 minutes before my scheduled appointment. Everyone was extremely friendly. After being directed to the waiting room, I was called in to pre-register. Since I had already updated my patient portal, most of the work was done and it was merely checking to see if anything had changed. Within a few minutes I was given a patient bracelet and asked to return to the waiting area.
It wasn't long at all before my name was called. I was instructed to follow the nurse to the examination room section and quickly had my vitals checked. I was informed that I needed to provide a urine and blood sample. Easy enough, I had to 'go' anyway. The phlebotomist was great. Despite the condition of my veins in the only arm available for this (due to lymph removal in my left arm), she was able to fill a few viles with minimal discomfort. I told her that others have had much trouble taking blood in the past. She said, "I've been doing this for 25 years". Experience has its benefits.
Dan Smith, the Nurse Practitioner arrived with a few questionnaires and some paper work that I needed to sign. He was very thorough. I was surprised on what I needed to do prior to and following the procedure. I was given two antiseptic sponges that I needed to use in the shower the night before and morning of the procedure. In addition, he said that he would prescribed a special (mouth) rinse that I also needed to use on the same schedule. Both were designed to prevent infection and pneumonia. I was also informed that I had to use a lung 'incentivizer' to help stretch my lungs after the procedure. Apparently, lungs shrink under anesthesia, and this device helps 'stretch' them back. [I had never heard of this and was not given this devise for any other surgery that required anesthesia]. I had mentioned this and Dan told me that the type of procedure I was going to have is very serious. [Apparently]. He finished up the paper work and quickly ran through the order of events and my responsibilities. He did say that he would call in the prescription for the rinse and a anti-nausea patch that I need to apply the night before. [I'm wondering what the morning shower will do to the patch..?] He said to expect a call on Monday informing me on the time of the procedure. [That's off-putting].
Dan left and shortly after, the anesthesiologist arrived. [I can't remember her name]. She reiterated some of the information that Dan covered and answered some of my questions. She did go over the risks and possible outcomes, but felt confident [because of my age and health] that things would go 'the normal route'. She mentioned that Dr Schanzer is 'the best' and does hundreds of these types of procedures. [This is my hope]. I did learn that the entry point will be in my groin, not my gut as I had thought. She mentioned that there will most likely be two entry points for the needles (and guides), but sometimes the doctor needs to cut into the dermal layer to reach the femoral artery. Generally, she said this would happen for patients that are morbidly obese. [I guess I'm just obese...LOL] It is what it is.
I asked if the plan was to still have one night's stay. She said, "Depending on the time of the procedure, you may need to have two nights. But everyone is different". She asked if I had any further questions, and with my saying no, she said, 'You're free to go - and good luck".
Now the waiting. I hope the procedure isn't too early, but not too late. Although I'm getting a ride, no one wants to deal with commuter traffic. Unlike my other surgeries, this procedure is 'way' inside. So my anxiety level is very high. One can't help but have thoughts of their own mortality under these situations. All I can do is be hopeful and optimistic that the hands of my medical professionals are capable and that everything (for me) is 'normal'
More to come.
I had my pre-op appointment with the anesthesiologist for my Triple A (Abdominal Aortic Anuerysm) endo-vascular procedure schedule for early next week. My appointment was at the UMass Memorial campus in Worcester. I'm happy that the weather cooperated and the bright sunshine provided positivity and hope. UMass Medical is huge, really huge. But, thankfully I was able to find parking in a lot right outside of the building I was visiting. [Reasonable price too - $3].
Not knowing where exactly to go, I was guided by exceptional signage and arrived 25 minutes before my scheduled appointment. Everyone was extremely friendly. After being directed to the waiting room, I was called in to pre-register. Since I had already updated my patient portal, most of the work was done and it was merely checking to see if anything had changed. Within a few minutes I was given a patient bracelet and asked to return to the waiting area.
It wasn't long at all before my name was called. I was instructed to follow the nurse to the examination room section and quickly had my vitals checked. I was informed that I needed to provide a urine and blood sample. Easy enough, I had to 'go' anyway. The phlebotomist was great. Despite the condition of my veins in the only arm available for this (due to lymph removal in my left arm), she was able to fill a few viles with minimal discomfort. I told her that others have had much trouble taking blood in the past. She said, "I've been doing this for 25 years". Experience has its benefits.
Dan Smith, the Nurse Practitioner arrived with a few questionnaires and some paper work that I needed to sign. He was very thorough. I was surprised on what I needed to do prior to and following the procedure. I was given two antiseptic sponges that I needed to use in the shower the night before and morning of the procedure. In addition, he said that he would prescribed a special (mouth) rinse that I also needed to use on the same schedule. Both were designed to prevent infection and pneumonia. I was also informed that I had to use a lung 'incentivizer' to help stretch my lungs after the procedure. Apparently, lungs shrink under anesthesia, and this device helps 'stretch' them back. [I had never heard of this and was not given this devise for any other surgery that required anesthesia]. I had mentioned this and Dan told me that the type of procedure I was going to have is very serious. [Apparently]. He finished up the paper work and quickly ran through the order of events and my responsibilities. He did say that he would call in the prescription for the rinse and a anti-nausea patch that I need to apply the night before. [I'm wondering what the morning shower will do to the patch..?] He said to expect a call on Monday informing me on the time of the procedure. [That's off-putting].
Dan left and shortly after, the anesthesiologist arrived. [I can't remember her name]. She reiterated some of the information that Dan covered and answered some of my questions. She did go over the risks and possible outcomes, but felt confident [because of my age and health] that things would go 'the normal route'. She mentioned that Dr Schanzer is 'the best' and does hundreds of these types of procedures. [This is my hope]. I did learn that the entry point will be in my groin, not my gut as I had thought. She mentioned that there will most likely be two entry points for the needles (and guides), but sometimes the doctor needs to cut into the dermal layer to reach the femoral artery. Generally, she said this would happen for patients that are morbidly obese. [I guess I'm just obese...LOL] It is what it is.
I asked if the plan was to still have one night's stay. She said, "Depending on the time of the procedure, you may need to have two nights. But everyone is different". She asked if I had any further questions, and with my saying no, she said, 'You're free to go - and good luck".
Now the waiting. I hope the procedure isn't too early, but not too late. Although I'm getting a ride, no one wants to deal with commuter traffic. Unlike my other surgeries, this procedure is 'way' inside. So my anxiety level is very high. One can't help but have thoughts of their own mortality under these situations. All I can do is be hopeful and optimistic that the hands of my medical professionals are capable and that everything (for me) is 'normal'
More to come.
Monday, February 27, 2017
The Embarkment
Ventured to UMass Medical in Worcester today for my rescheduled appointment with Dr. Schanzer. He is my second opinion for my abdominal aortic aneurysm (Triple A).
Although my appointment was mid-day, and there was no snow to deal with, it was still quite tricky getting there. Of course GPS had me take a road that was closed for bridge reconstruction, but I was able to traverse by blazing through an alternative route.
The UMass Medical Campus is HUGE. I finally got to the parking garage and arrived at the doctor's reception/check in area more than the half hour prior to the appointment as they requested. Of course I had to fill out the obligatory paperwork and complete the multitude of questionnaires focusing on my current and past health issues. However, I completed those in time for my scheduled appointment, but I guess they weren't ready for me. I hate waiting, but I had to endure a two and a half hour wait. This unto itself was unpleasant, but the icing on the cake was having to hear my 'neighbors' watch endless You tube/Facebook animal videos WITH THE SOUND ON. I had all I could do to not say anything. Others in the area shared the rolling of the eyes, but not one person asked them to turn the phone volume down. I finally had to get up and find another area to sit. [I used to laugh at the sheep singing Whitney Houston songs, but WTF?]
Finally I was called in. I was so happy to see fresh faces and be away from the LOUD family. The medical professional started taking my vitals and led me to an examination room, where she entered information (from my work sheets) onto their system. She was pleasant - and quick. She had me disrobe and had me on the examination table when she realized how big I am. She said, "They don't make these tables for people your size." I said, "I get that a lot" as I chuckled.
I waited for some time before Dr Schanzer arrived. Once seated, I caught him up on my back story and he proceeded to tell me that he reviewed my CT scan results. "According to my calculations on what I could see, your aneurysm is 5.6 cm. Generally we don't do anything until it's 5.5 cm, so you are there. I wouldn't put it off, but you are at a 5% rupture rate if you wait much longer. The risk factors for the stint are 3%, so the benefits do outweigh the risks. Those risks are the same for most types of surgery: heart attack; internal bleeding due to damage to a vessel, and others."
He continued, "There are two ways to approach this. One being open surgery, where we go in and fix the area of the aneurysm. However, given your anatomy, I recommend EVAR (endovascular insertion of a stint). The procedure takes about 2 hours and requires an overnight stay (for most) with a follow-up in a week, then a month, then three, then six - for the rest of your life. An ultrasound will indicate if there is any slippage or endo-leaks, but most can be treated as outpatient procedures."
He looked at his calendar and said he could schedule something for March 28th. I raised my eyebrows. Thought a moment and said, "That makes sense to get it out of the way since it's been weighing on my mind since it was discovered." I asked what the recovery period was and if I would have to come back within a few days for a check on the femoral artery incision. Dr Schanzer pointed to my gut and said, "We'll go in through here, so there will be only two small entry holes. So there's no major pain. You'll probably feel 'beaten up' for about a week, but able to resume life shortly after." I asked if I would have any physical limitations. He said, "I wouldn't go to the gym or do any heavy lifting for about a week, but after - no problem."
So I agreed to have him pencil in the 28th. He asked if I had any further questions, but I told him I may after, but not right now. He gave me his card (contact info) and told me to call if I did. He added that his office will be contacting me and that I would need to come in for a visit with the anesthesiologist as part of the pre-op.
Upon leaving the campus, I needed to visit the parking cashier. The line was outside and around the corner. Apparently, their computer systems and self service kiosks were down. I felt sorry for the one attendant. When I got here attention, she told me to just leave and hit the 'help' button at the gate and I could get out. [Really?] I thanked her and left. Apparently everyone leaving had this inside knowledge and the gates were being raised almost automatically. [Why do I get the feeling that I won't hear the end of this?]
So I killed much of the day traveling, waiting and skipping out without having to pay for parking. At least when I left it was still sunny and I was traveling East, so I had no problems with solar slowdowns. I'll take it.
So it looks like this become real as I embark on a health side trip.
More to come!
Although my appointment was mid-day, and there was no snow to deal with, it was still quite tricky getting there. Of course GPS had me take a road that was closed for bridge reconstruction, but I was able to traverse by blazing through an alternative route.
The UMass Medical Campus is HUGE. I finally got to the parking garage and arrived at the doctor's reception/check in area more than the half hour prior to the appointment as they requested. Of course I had to fill out the obligatory paperwork and complete the multitude of questionnaires focusing on my current and past health issues. However, I completed those in time for my scheduled appointment, but I guess they weren't ready for me. I hate waiting, but I had to endure a two and a half hour wait. This unto itself was unpleasant, but the icing on the cake was having to hear my 'neighbors' watch endless You tube/Facebook animal videos WITH THE SOUND ON. I had all I could do to not say anything. Others in the area shared the rolling of the eyes, but not one person asked them to turn the phone volume down. I finally had to get up and find another area to sit. [I used to laugh at the sheep singing Whitney Houston songs, but WTF?]
Finally I was called in. I was so happy to see fresh faces and be away from the LOUD family. The medical professional started taking my vitals and led me to an examination room, where she entered information (from my work sheets) onto their system. She was pleasant - and quick. She had me disrobe and had me on the examination table when she realized how big I am. She said, "They don't make these tables for people your size." I said, "I get that a lot" as I chuckled.
I waited for some time before Dr Schanzer arrived. Once seated, I caught him up on my back story and he proceeded to tell me that he reviewed my CT scan results. "According to my calculations on what I could see, your aneurysm is 5.6 cm. Generally we don't do anything until it's 5.5 cm, so you are there. I wouldn't put it off, but you are at a 5% rupture rate if you wait much longer. The risk factors for the stint are 3%, so the benefits do outweigh the risks. Those risks are the same for most types of surgery: heart attack; internal bleeding due to damage to a vessel, and others."
He continued, "There are two ways to approach this. One being open surgery, where we go in and fix the area of the aneurysm. However, given your anatomy, I recommend EVAR (endovascular insertion of a stint). The procedure takes about 2 hours and requires an overnight stay (for most) with a follow-up in a week, then a month, then three, then six - for the rest of your life. An ultrasound will indicate if there is any slippage or endo-leaks, but most can be treated as outpatient procedures."
He looked at his calendar and said he could schedule something for March 28th. I raised my eyebrows. Thought a moment and said, "That makes sense to get it out of the way since it's been weighing on my mind since it was discovered." I asked what the recovery period was and if I would have to come back within a few days for a check on the femoral artery incision. Dr Schanzer pointed to my gut and said, "We'll go in through here, so there will be only two small entry holes. So there's no major pain. You'll probably feel 'beaten up' for about a week, but able to resume life shortly after." I asked if I would have any physical limitations. He said, "I wouldn't go to the gym or do any heavy lifting for about a week, but after - no problem."
So I agreed to have him pencil in the 28th. He asked if I had any further questions, but I told him I may after, but not right now. He gave me his card (contact info) and told me to call if I did. He added that his office will be contacting me and that I would need to come in for a visit with the anesthesiologist as part of the pre-op.
Upon leaving the campus, I needed to visit the parking cashier. The line was outside and around the corner. Apparently, their computer systems and self service kiosks were down. I felt sorry for the one attendant. When I got here attention, she told me to just leave and hit the 'help' button at the gate and I could get out. [Really?] I thanked her and left. Apparently everyone leaving had this inside knowledge and the gates were being raised almost automatically. [Why do I get the feeling that I won't hear the end of this?]
So I killed much of the day traveling, waiting and skipping out without having to pay for parking. At least when I left it was still sunny and I was traveling East, so I had no problems with solar slowdowns. I'll take it.
So it looks like this become real as I embark on a health side trip.
More to come!
Sunday, February 26, 2017
Tattoo Time
Mother Nature slammed us with a number of storms and more than 2 feet of heavy wet snow. All in just a few weeks. But par for the course, we've had unseasonably warm weather (like late Spring) and now all the snow is gone. Can anyone say climate change?
I had my appointment with Dr.Chatson for my aureola tattoo this week. I was a bit anxious since I've never had a tattoo and the fear of the unknown had taken over. While at the doctor's office, I was assured that there would be very little pain and the whole procedure would be quick.
Andrea, the tattoo artist did most of the work with Dr. Chatson reviewing the progress of her work throughout the session. Andrea was quite capable, however, she had some difficulty with the tattoo needle. Apparently, there was a short in the cord and each time she started to use it, the machine would cut out. There was quite the commotion in trying to determine what the cause was and how to remedy it. I had already received numerous injections of local anesthesia, so I was hoping that they would get it figured out, as I didn't feel like coming back another day. Finally (after about a half hour of fussing) things were working properly. Being a tall guy, most examination tables are too short for me. Because of this, I don't 'fit' right and after time, my back begins to bother me. While they were working on a remedy I had asked to stand for a bit. I'm glad I was able to.
Once Andrea proceeded with the tattoo, things began to go quickly. Yes, there was no pain, only the weird sensation of something thumping repeatedly on my chest. Once she was done, the doctor gave his approval and she asked me to look at her work. They did mention that the color would be darker because pigment is lost over time. I did look down but thought afterwards that I should have been given a mirror so I could see it head on. Oh well.
I was bandaged up and instructed to not shower (or get the area wet) until Saturday. I was given a follow up appointment in April and I went on my merry way. Most of the day I was still numb, but as the evening approached I began to feel some discomfort. I did not sleep well that night due to the fact that I'm a side sleeper and was unable to find a comfortable position. Luckily night two was much better.
On Saturday I was able to remove the bandages and take a shower. However, the blood had dried into the bandage and I was unable to remove portions of it fearing that I would lift the scab. I cut away most of the bandage and soaked the remainder in the shower until I was able to delicately remove the rest. I did get a good look at the finished product and did see how the color was a bit stronger than my other nipple, but unless you knew or were really looking, you couldn't tell. He/she did a good job. Now the healing.
I had my appointment with Dr.Chatson for my aureola tattoo this week. I was a bit anxious since I've never had a tattoo and the fear of the unknown had taken over. While at the doctor's office, I was assured that there would be very little pain and the whole procedure would be quick.
Andrea, the tattoo artist did most of the work with Dr. Chatson reviewing the progress of her work throughout the session. Andrea was quite capable, however, she had some difficulty with the tattoo needle. Apparently, there was a short in the cord and each time she started to use it, the machine would cut out. There was quite the commotion in trying to determine what the cause was and how to remedy it. I had already received numerous injections of local anesthesia, so I was hoping that they would get it figured out, as I didn't feel like coming back another day. Finally (after about a half hour of fussing) things were working properly. Being a tall guy, most examination tables are too short for me. Because of this, I don't 'fit' right and after time, my back begins to bother me. While they were working on a remedy I had asked to stand for a bit. I'm glad I was able to.
Once Andrea proceeded with the tattoo, things began to go quickly. Yes, there was no pain, only the weird sensation of something thumping repeatedly on my chest. Once she was done, the doctor gave his approval and she asked me to look at her work. They did mention that the color would be darker because pigment is lost over time. I did look down but thought afterwards that I should have been given a mirror so I could see it head on. Oh well.
I was bandaged up and instructed to not shower (or get the area wet) until Saturday. I was given a follow up appointment in April and I went on my merry way. Most of the day I was still numb, but as the evening approached I began to feel some discomfort. I did not sleep well that night due to the fact that I'm a side sleeper and was unable to find a comfortable position. Luckily night two was much better.
On Saturday I was able to remove the bandages and take a shower. However, the blood had dried into the bandage and I was unable to remove portions of it fearing that I would lift the scab. I cut away most of the bandage and soaked the remainder in the shower until I was able to delicately remove the rest. I did get a good look at the finished product and did see how the color was a bit stronger than my other nipple, but unless you knew or were really looking, you couldn't tell. He/she did a good job. Now the healing.
Other health issues
- Because of the storms, I needed to reschedule my Triple A consultation at UMass Medical until later in the month.
- I've been able to start walking again. I had worked up to three miles a day, but decided to take the weekend off since my foot was 'acting' up.
Thursday, February 2, 2017
Ground Hog Day - Update
Well it appears that Punxsutawney Phil has seen his shadow and scampered into his den, thus signaling 6 more weeks of Winter. Apparently his counterpart, Staten Island Chuck has signaled Spring right around the corner. Clearly one is dealing with alternative facts. Time will tell.
I had my appointment with Dr. Jonathan Ross of New England Neurological in Lawrence this morning. I was referred to him by my Oncologist, Dr. Mehta as a result of my 'gradual' worsening of the neuropathy in my feet (balls of feet and toes on each foot). After finding the office and filling out the obligatory patient paperwork, I was called into Dr. Ross's office for patient interview to gather history and a subsequent examination.
After telling my 'story', Dr. Ross asked me to remove my pants and socks. He had me stand on each foot with my eyes closed; on my tip toes; and on my heels. He seemed pleased that I could pass the 'field sobriety test' and had me sit on the examination table. He looked into my eyes and had me verify some of his hand movements. [Not sure why he was checking eyes, but I did tell him I had cataract surgery last May.]
He checked my reflexes then moved a cold-to-the-touch, implement at various points on my legs and feet. I was surprised how I couldn't feel any coolness on my lower feet. To some extent, I had a lesser sense of the temperature all the way up my calves before I could feel how cold the implement really was. That was an eye opener for me.
Dr. Ross then asked me to close my eyes and tell me when I could feel a pin. I had no sensation until he got to my ankles. As he went up the calf, I could feel the discomfort. Another eye opener.
After all the testing, Dr Ross stated that he agreed the neuropathy was a side effect of the chemo and most likely won't get worse or improve. He said, "Unfortunately there is no cure and your being tall is not helping you. The regeneration cells/nutrients have far to travel in your body, so your lower extremities are exhibiting the various degrees of neuropathy. You may, over time have some improvement, but all you can do is wait and see if it worsens before having neurological tests performed."
Well I can't say I expected any more or less. It is what it is. I'd gladly take this amount of neuropathy over a second round of cancer. As long as I'm still able to enjoy life and be mobile without nerve pain, I'm happy to monitor its progression.
I did mention to Dr. Ross that Charcot Marie Tooth disease (CMT) runs in my family. He thought that this wasn't that, but recommended a test if it progresses. He did ask if I knew which gene my siblings had. Apparently there are many genes capable of causing CMT so I'll ask.
So it appears that there is nothing he can do for me or my condition. He did mention again to contact the office if things change (worsen). If this does happen he wants to give me some tests.
More to come!
I had my appointment with Dr. Jonathan Ross of New England Neurological in Lawrence this morning. I was referred to him by my Oncologist, Dr. Mehta as a result of my 'gradual' worsening of the neuropathy in my feet (balls of feet and toes on each foot). After finding the office and filling out the obligatory patient paperwork, I was called into Dr. Ross's office for patient interview to gather history and a subsequent examination.
After telling my 'story', Dr. Ross asked me to remove my pants and socks. He had me stand on each foot with my eyes closed; on my tip toes; and on my heels. He seemed pleased that I could pass the 'field sobriety test' and had me sit on the examination table. He looked into my eyes and had me verify some of his hand movements. [Not sure why he was checking eyes, but I did tell him I had cataract surgery last May.]
He checked my reflexes then moved a cold-to-the-touch, implement at various points on my legs and feet. I was surprised how I couldn't feel any coolness on my lower feet. To some extent, I had a lesser sense of the temperature all the way up my calves before I could feel how cold the implement really was. That was an eye opener for me.
Dr. Ross then asked me to close my eyes and tell me when I could feel a pin. I had no sensation until he got to my ankles. As he went up the calf, I could feel the discomfort. Another eye opener.
After all the testing, Dr Ross stated that he agreed the neuropathy was a side effect of the chemo and most likely won't get worse or improve. He said, "Unfortunately there is no cure and your being tall is not helping you. The regeneration cells/nutrients have far to travel in your body, so your lower extremities are exhibiting the various degrees of neuropathy. You may, over time have some improvement, but all you can do is wait and see if it worsens before having neurological tests performed."
Well I can't say I expected any more or less. It is what it is. I'd gladly take this amount of neuropathy over a second round of cancer. As long as I'm still able to enjoy life and be mobile without nerve pain, I'm happy to monitor its progression.
I did mention to Dr. Ross that Charcot Marie Tooth disease (CMT) runs in my family. He thought that this wasn't that, but recommended a test if it progresses. He did ask if I knew which gene my siblings had. Apparently there are many genes capable of causing CMT so I'll ask.
So it appears that there is nothing he can do for me or my condition. He did mention again to contact the office if things change (worsen). If this does happen he wants to give me some tests.
Updates on other health issues
- Triple A - After some research, I decided to go with the current traditional endo-vascular repar (EVAR) approach. I have an appointment at UMass Medical in Worcester in a few weeks.
- My sore foot - After two months of being unable to take my daily walks due to an unexplained pain in my left foot, I'm happy to report that I was able to take a 1 mile walk yesterday. The foot is not 100% yet, but I'm hoping to build the muscle back so I can resume my regimen of 2-5 miles per day. Baby steps!
- Reconstruction - I have an appointment in a few weeks for my aureola tattoo. This should be interesting.
More to come!
Thursday, January 19, 2017
Buckle-up kiddies, rough road ahead!
Mid-January and Mother Nature has been kind - so far. We've been needing rain and we're getting it. Yes, some snow from time to time, but luckily in manageable amounts that don't last too long. I'm hopefully optimistic, but am well aware of what February can mean to the North East.
I had my follow-up appointment with Dr. Pare today to discuss the CAT scan I had at the end of 2016. [Technically it's called a CT scan, but the vernacular always leans to CAT]. I was really hoping that he would be telling me that the aneurysm has gown a little, but we'll continue to monitor - NOT. Unfortunately, the opposite transpired.
Dr. Pare greeted me and asked me to have a seat (not a good sign). After exchanging pleasantries, he asked if we had discussed the stint. [Geesh, cut right to the chase.] I said, "We did, briefly." He then excused himself to retrieve a stint. On the way out he said, "You are a good candidate for the stint."
Upon his return he had something resembling Chinese finger cuffs. He then told me that my aneurysm was now 5.5 cm [Sh*t] and we now have to look at options. He began a rough drawing trying to depict my aorta and bulging sack. He mentioned that the CAT scan was clear and he could see that it had progressed to the point where I was encouraged to do something. He gave me the sample stint and told me that it is inserted through my femoral artery and it opens to what we are now looking at. He positioned the stint over his drawing to demonstrate where it would be placed and then showed another piece that is attached. [Looked like a pair of pants.]
He said the procedure is day surgery. Generally, the patient is admitted the night before and given a blood thinner. The apparatus is inserted at the groin (both sides). Most are discharged that day. The recovery is quick and entails changing the dressing with yearly follow ups. He did say there was a risk of endo-leaks, but it did not require surgery to remedy. Like any procedure there are other risks, but each is monitored. I asked what the time-frame was. Dr. Pare said that 'the company' would take measurements from my CAT scan image and produce a customized stint. He mentioned that my bulge was far enough above the 'split'. This makes for a better 'seating' of the stint.
I had mentioned two other types that I have heard of and he was very supportive of my looking into those options. He said that the more information I had - the better. So he's going to contact the company and initiate their measurement process and he will contact me next week to discuss a timeline. He thought that it might be 6-8 weeks for the procedure.
Now I've reach a point where I have to do something. I will re-connect with St. Elizabeth's in Brighton to see how their 'pilot' program is progressing. They have a 'new' procedure that decreases/eliminates endo-leaks where they inject a polymer into the sack.
So, more research and phone calls are on the agenda.
More to come.
I had my follow-up appointment with Dr. Pare today to discuss the CAT scan I had at the end of 2016. [Technically it's called a CT scan, but the vernacular always leans to CAT]. I was really hoping that he would be telling me that the aneurysm has gown a little, but we'll continue to monitor - NOT. Unfortunately, the opposite transpired.
Dr. Pare greeted me and asked me to have a seat (not a good sign). After exchanging pleasantries, he asked if we had discussed the stint. [Geesh, cut right to the chase.] I said, "We did, briefly." He then excused himself to retrieve a stint. On the way out he said, "You are a good candidate for the stint."
Upon his return he had something resembling Chinese finger cuffs. He then told me that my aneurysm was now 5.5 cm [Sh*t] and we now have to look at options. He began a rough drawing trying to depict my aorta and bulging sack. He mentioned that the CAT scan was clear and he could see that it had progressed to the point where I was encouraged to do something. He gave me the sample stint and told me that it is inserted through my femoral artery and it opens to what we are now looking at. He positioned the stint over his drawing to demonstrate where it would be placed and then showed another piece that is attached. [Looked like a pair of pants.]
He said the procedure is day surgery. Generally, the patient is admitted the night before and given a blood thinner. The apparatus is inserted at the groin (both sides). Most are discharged that day. The recovery is quick and entails changing the dressing with yearly follow ups. He did say there was a risk of endo-leaks, but it did not require surgery to remedy. Like any procedure there are other risks, but each is monitored. I asked what the time-frame was. Dr. Pare said that 'the company' would take measurements from my CAT scan image and produce a customized stint. He mentioned that my bulge was far enough above the 'split'. This makes for a better 'seating' of the stint.
I had mentioned two other types that I have heard of and he was very supportive of my looking into those options. He said that the more information I had - the better. So he's going to contact the company and initiate their measurement process and he will contact me next week to discuss a timeline. He thought that it might be 6-8 weeks for the procedure.
Now I've reach a point where I have to do something. I will re-connect with St. Elizabeth's in Brighton to see how their 'pilot' program is progressing. They have a 'new' procedure that decreases/eliminates endo-leaks where they inject a polymer into the sack.
So, more research and phone calls are on the agenda.
More to come.
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