It’s been about a month since my last chemotherapy treatment. The nausea and peripheral neuropathy (numbness in my hands and feet) are still lingering, but less severe with each passing day. My liver must be working overtime in an effort to purge the chemo’s toxicity from my system.
Last week was a good week.
On Tuesday, I had another PET scan (Positron Emission Tomography). This is the test where they have me drink a nasty-tasting canola oil concoction, inject me with radioactive sugar and an iodinated contrast material, and then place me on a table that slides back and forth while a donut-shaped tube takes digital images to determine changes in cellular activity (it’s not nearly as enjoyable as it sounds). This is the fourth PET scan that I’ve had in the past 6 months, so at this point I’ve learned to tolerate the procedure.
On Thursday I went to the Oncologist for lab work (medical lingo for blood tests) and the results of the PET Scan. The news was all good. My white blood counts were significantly improved, a by-product of a recovering immune system. More importantly, the PET Scan confirmed that the chemotherapy has done its job and there are no further signs of the disease.
Going into this whole ordeal, I was assured that this specific regimen of chemotherapy boasts a 90% success rate in treating Stage II Hodgkin’s Lymphoma. But even with the odds that good, all along the way, one can only hope they do not fall into the statistical minority. Fortunately, I am among the majority and my cancer is now officially in remission.
So, now that I’m on the road to recovery, what’s next? Well, in the short term, a much anticipated family cruise to Mexico. Medically speaking, I will be under the watchful eyes of my oncologist for quite a while. My next visit will be in 6 weeks. This will be for more lab work to make sure that my immune system hasn’t stalled and that my white blood counts continue to rally. I will also have the pleasure of enduring a series of PET scans, one every 3 months for the next 2 years, then one every 6 months, for the following 3 years. In reality, this will just present a truly minor inconvenience over the next 5 years.
My initial intention was to use this blog as an efficient method of communicating my progress through chemotherapy. I think it has achieved the initial objective. So, now that treatment is complete and I am beginning to regain my strength, I look forward to catching up with friends and family in person.
I anticipate that my blog entries will continue, but on a far less frequent basis. The blog can still prove an efficient means of providing updates, especially for those who I don’t get the opportunity to see on a regular basis.
That’s all for today. Thank you for reading. I’ll write again when there is more to tell…for now, please go out and do something positive today, hug a loved one and count your blessing!
Glenn
Monday, November 9, 2009
Sunday, October 11, 2009
Chemo Completed!
I am very pleased to report that I received my 12th and final chemotherapy infusion on Thursday, October 8th. It's been a very long six months or so and I am relieved to have this part of my journey behind me.
On Thursday, my white blood count (Absolute Neutrophil Count -- ANC) was pretty low, at 500. This is borderline between moderate and severe Netropenia, so I think I just squeaked it out! But since the doctor and nurse practitioner knew how determined I was to get this regimen completed and move on, treatment went on...I also think the fact that my Monocyte count (another type of white blood cell) was on the upswing, this helped to alleviate much of their concern about treating at such a low ANC level.
I'll be heading back next Thursday, October 15th for more blood work and to see how far my white blood counts have indeed recovered.
Then, on to the next phase of recovery ---more testing. In my near future, I will have another Pulmonary Function Test to measure the impact chemo has had on my respiratory functions, as well as a PET Scan to ensure all of the disease has been eradicated. I feel very positive about the PET scan since the last 2 scans have shown no further sign of cancer.
For now, I am eagerly awaiting for the toxicity of the chemo to dissipate, the nausea to relinquish its pervasive presence and the peripheral neuropathy to eventually fade away. In time, I will regain my strength, my ability to sleep for more than 2 hours stretches, eyebrows, and hopefully even the need for the use of a hair brush again.
Until then, I remain extremely grateful for all of the support that I have received from my family, friends and countless medical professionals who have all contributed to my care and well-being, be it medical, spiritual or emotional --- Thank you all.
I will keep you posted as I move through the next phases of tests --- But I don't expect any surprises and am quite confident the news to come should all be good!
That's all for today. Thank you for reading. And as always, go out and do something positive today, hug a loved one and count your blessing!
Glenn
On Thursday, my white blood count (Absolute Neutrophil Count -- ANC) was pretty low, at 500. This is borderline between moderate and severe Netropenia, so I think I just squeaked it out! But since the doctor and nurse practitioner knew how determined I was to get this regimen completed and move on, treatment went on...I also think the fact that my Monocyte count (another type of white blood cell) was on the upswing, this helped to alleviate much of their concern about treating at such a low ANC level.
I'll be heading back next Thursday, October 15th for more blood work and to see how far my white blood counts have indeed recovered.
Then, on to the next phase of recovery ---more testing. In my near future, I will have another Pulmonary Function Test to measure the impact chemo has had on my respiratory functions, as well as a PET Scan to ensure all of the disease has been eradicated. I feel very positive about the PET scan since the last 2 scans have shown no further sign of cancer.
For now, I am eagerly awaiting for the toxicity of the chemo to dissipate, the nausea to relinquish its pervasive presence and the peripheral neuropathy to eventually fade away. In time, I will regain my strength, my ability to sleep for more than 2 hours stretches, eyebrows, and hopefully even the need for the use of a hair brush again.
Until then, I remain extremely grateful for all of the support that I have received from my family, friends and countless medical professionals who have all contributed to my care and well-being, be it medical, spiritual or emotional --- Thank you all.
I will keep you posted as I move through the next phases of tests --- But I don't expect any surprises and am quite confident the news to come should all be good!
That's all for today. Thank you for reading. And as always, go out and do something positive today, hug a loved one and count your blessing!
Glenn
Thursday, September 24, 2009
Eleven Down, One To Go!
So today I started round 6 of my chemotherapy -- finally. Each round is a month and is comprised of a chemo treatment, followed by a week off, follow by another chemo treatment and then another week off. In total, each round has 2 treatments and 2 off weeks. So in short, what that means is that I had my 11th treatment today. Doing some quick math (and with out a calculator), if my total treatment protocol was 12 treatments, and I've completed 11, then I only have 1 remaining. (oh boy, it looks like I've been reviewing too much elementary school math homework lately).
I must admit I was a bit apprehensive today, prior to my blood test results. My fear was that my white blood counts had tanked to a level where it wouldn't be safe to administer the next chemotherapy infusion. It's been a very long ride so far, so I dread the possibility of any further delays.
Fortunately, even though my neutrophil count dipped a staggering 1600 points in the past week, to 760, it was just high enough to allow for chemotherapy today. So the good news is that I had chemo today and we're getting closer to the finish line. The bad news is that I had chemo today and FEEL like I had chemo today, a bit toxic and nauseous. But this is old hat by now and will eventually dissipate.
I will still have to be extra careful as we enter flu season to keep my distance from anyone with the sniffles or otherwise and be sure to continue with my dietary restrictions to limit any possible exposure to food-borne bacteria.
For now, my immediate goal is to stay healthy enough for next couple of weeks, so we can wrap up with the last treatment on October 8th. Then I can focus on the more important issues at hand, like what I'm going to be for Halloween this year!
That's it for today. Thank you for reading. I'll write again when I have some new information to share. As always, please go out and do something positive today, hug a loved one and count your blessings.
Glenn
I must admit I was a bit apprehensive today, prior to my blood test results. My fear was that my white blood counts had tanked to a level where it wouldn't be safe to administer the next chemotherapy infusion. It's been a very long ride so far, so I dread the possibility of any further delays.
Fortunately, even though my neutrophil count dipped a staggering 1600 points in the past week, to 760, it was just high enough to allow for chemotherapy today. So the good news is that I had chemo today and we're getting closer to the finish line. The bad news is that I had chemo today and FEEL like I had chemo today, a bit toxic and nauseous. But this is old hat by now and will eventually dissipate.
I will still have to be extra careful as we enter flu season to keep my distance from anyone with the sniffles or otherwise and be sure to continue with my dietary restrictions to limit any possible exposure to food-borne bacteria.
For now, my immediate goal is to stay healthy enough for next couple of weeks, so we can wrap up with the last treatment on October 8th. Then I can focus on the more important issues at hand, like what I'm going to be for Halloween this year!
That's it for today. Thank you for reading. I'll write again when I have some new information to share. As always, please go out and do something positive today, hug a loved one and count your blessings.
Glenn
Saturday, September 12, 2009
It's All in the Numbers
From the time we are very young, we are focused on numbers. During our early years it's about school grades and test results, MCAS scores and SAT results. As we get older it's about college entrance exams, GPA's and starting salaries. Once we begin to settle into our adult lives, the most interesting numbers become, tracking Tiger's strokes upon the leader board during the latest tournament, how the Red Sox are doing in the standings and whether the Patriots will have enough wins this season to take it all and regain the Super Bowl title. For the most part, these are all fun numbers to track.
Well, for cancer patients, the focus can be slightly slanted on a new set of number...blood counts. For me personally, my weekly focus is on my White Blood Counts. The chemo therapy I've been receiving has done a good job of killing off the cancer cells, however it's also done an equally good job of killing off the healthy white blood cells, especially the nuetrophils, the unique white cells that protect me from infections.
Over the last several weeks, I've experienced some depleted "numbers" due to chemo's unrelenting assault on my white blood cells. A healthy person will have a total white blood count in the range of 4,000 - 10,000 with the all important neutrophil count (the cells that fight infection) in the range of 2,500 - 5,000.
Throughout chemo therapy my counts have been a bit lower, with my neutrophil count commonly dipping below the dreaded 1,000 range, triggering "Neutropenia" and requiring special precautions including a restrictive diet and every effort to avoid exposure to bacteria and potential infection.
A few weeks ago I hit a new low. It started on my normal weekly visit for blood labs on Thursday, August 27th. My neutrophil counts had dropped to below 700, so I was officially neutropenic. The problem with taking a static blood count is that the doctors don't know in which direction my counts were going...was I recovering and my counts going up, or was I continuing to crash and becoming more vulnerable to every sneeze, cough and germy hand shake in the outside word?
So the doctors asked that I return on Monday for another set of blood tests. The results were staggering, my neutrophil counts had plunged to 30 -- "boy in the bubble status". I was instructed that if I were to go anywhere other than home then to wear a mask and wash my hands constantly.
For treatment, they injected me with a drug called Neupogen. As I mentioned in an earlier posting, this medication stimulates the blood system (bone marrow) to make white blood cells, helping you fight infections. I was then given the option to either learn how to inject myself with another dose of neupogen the following day, or come back for another visit Tuesday and have a nurse administer the drug. Well, my aversion to needles, coupled with the sheer thought of gearing up mentally to induce pain upon myself, made it an easy decision. I opted for the 90 minute round trip to engage the services of a trained professional.
It was actually a good thing that I went back to the hospital on Tuesday. Prior to the injection, they ran another set of blood labs. My neutrophil count has risen from 30 to 200, so the neupogen was doing it's job. But we were still very far away from the moderate safety of the much cherished 1000 count. So it was decided, I would return once again the next day, on Wednesday, for a third daily injection of neupogen. Hopefully, this would do the trick and boost my counts to 1000.
Another delay I was encountering, due to the low neutrophil counts, was that my Oncologist could not proceed with my next round of chemo. With my white cells so low, the chemo would just further depress my immune system and then who knows what...so yet another obstacle prolonging my journey...
The plan was to skip my scheduled chemo for Thursday September 3rd, because based upon drug protocol, there has to be at least 72 hours from the last neupogen injection until chemo is administered. So the plans were to resume treatment right after Labor Day on Tuesday, September 8th.
So, I arrived on Tuesday for my blood labs to check my white counts and then anticipated receiving chemo treatment #10. Alas, very much to my surprise and dismay, there would be no chemo on Tuesday. My total white counts had done a drastic turnaround and now were at a whopping 22,000. For me, I thought this was great news. If the average total white counts in a healthy adult can range from 4,000 to 10,000, then the neupogen must have done a spectacular job in making my white counts super healthy. Unfortunately, the doctors, who are trained to be far more analytical in their evaluation of cause and effect, didn't quickly agree with my diagnosis.
They explained that the effects of neupogen usually only lasts 3 or 4 days and it had been 6 days since the last injection, so they were looking for other causes of a high white count, like infection, more specifically another pneumonia.
Although, clearly not a doctor, I refuted their hypothesis. Without the presence of any symptoms, no fever, no coughing, no pain (other than the one in my ass for the past six months -- but that's just how I characterized my cancer in general from the beginning), I found it hard to believe that I had an infection. But nonetheless, my doctors, who are extremely cautious and proactive in their care, ordered some more tests, urine samples, more blood cultures and another chest CT scan.
On Wednesday, I was invited back for the results and yet more blood labs. This time my total white counts were down to 15,000 from 22,000 the day before. All the tests from Tuesday were negative, no signs of any infection. It looks like I was correct, the neupogen just had a delayed yet profound effect on my white blood count. I was cleared for Chemo and received infusion #10 on Thursday, September 10th, (by the way, had I not hit the bumps in the road earlier along the way, that was the date I was expecting to finish up).
But now my important numbers, include "1000", the neutrophil count needed to stay out of "trouble"; " 2", the total number of chemo infusions left; and "10/08/09" , the date, provided all else goes smoothly, that I will be receiving my 12th and final chemo infusion.
Funny how your perspective can change. so quickly. I just hope that soon enough my focus can go back to the more fun numbers like those of the Red Sox, Patriots and Tiger.
Until then, I will just keep my attention were it needs to be for the moment.
Thanks for reading, I will write again when there is more excitement to share. In the meantime, please go out and do something positive today, hug a loved one and count your blessings!
Glenn
Well, for cancer patients, the focus can be slightly slanted on a new set of number...blood counts. For me personally, my weekly focus is on my White Blood Counts. The chemo therapy I've been receiving has done a good job of killing off the cancer cells, however it's also done an equally good job of killing off the healthy white blood cells, especially the nuetrophils, the unique white cells that protect me from infections.
Over the last several weeks, I've experienced some depleted "numbers" due to chemo's unrelenting assault on my white blood cells. A healthy person will have a total white blood count in the range of 4,000 - 10,000 with the all important neutrophil count (the cells that fight infection) in the range of 2,500 - 5,000.
Throughout chemo therapy my counts have been a bit lower, with my neutrophil count commonly dipping below the dreaded 1,000 range, triggering "Neutropenia" and requiring special precautions including a restrictive diet and every effort to avoid exposure to bacteria and potential infection.
A few weeks ago I hit a new low. It started on my normal weekly visit for blood labs on Thursday, August 27th. My neutrophil counts had dropped to below 700, so I was officially neutropenic. The problem with taking a static blood count is that the doctors don't know in which direction my counts were going...was I recovering and my counts going up, or was I continuing to crash and becoming more vulnerable to every sneeze, cough and germy hand shake in the outside word?
So the doctors asked that I return on Monday for another set of blood tests. The results were staggering, my neutrophil counts had plunged to 30 -- "boy in the bubble status". I was instructed that if I were to go anywhere other than home then to wear a mask and wash my hands constantly.
For treatment, they injected me with a drug called Neupogen. As I mentioned in an earlier posting, this medication stimulates the blood system (bone marrow) to make white blood cells, helping you fight infections. I was then given the option to either learn how to inject myself with another dose of neupogen the following day, or come back for another visit Tuesday and have a nurse administer the drug. Well, my aversion to needles, coupled with the sheer thought of gearing up mentally to induce pain upon myself, made it an easy decision. I opted for the 90 minute round trip to engage the services of a trained professional.
It was actually a good thing that I went back to the hospital on Tuesday. Prior to the injection, they ran another set of blood labs. My neutrophil count has risen from 30 to 200, so the neupogen was doing it's job. But we were still very far away from the moderate safety of the much cherished 1000 count. So it was decided, I would return once again the next day, on Wednesday, for a third daily injection of neupogen. Hopefully, this would do the trick and boost my counts to 1000.
Another delay I was encountering, due to the low neutrophil counts, was that my Oncologist could not proceed with my next round of chemo. With my white cells so low, the chemo would just further depress my immune system and then who knows what...so yet another obstacle prolonging my journey...
The plan was to skip my scheduled chemo for Thursday September 3rd, because based upon drug protocol, there has to be at least 72 hours from the last neupogen injection until chemo is administered. So the plans were to resume treatment right after Labor Day on Tuesday, September 8th.
So, I arrived on Tuesday for my blood labs to check my white counts and then anticipated receiving chemo treatment #10. Alas, very much to my surprise and dismay, there would be no chemo on Tuesday. My total white counts had done a drastic turnaround and now were at a whopping 22,000. For me, I thought this was great news. If the average total white counts in a healthy adult can range from 4,000 to 10,000, then the neupogen must have done a spectacular job in making my white counts super healthy. Unfortunately, the doctors, who are trained to be far more analytical in their evaluation of cause and effect, didn't quickly agree with my diagnosis.
They explained that the effects of neupogen usually only lasts 3 or 4 days and it had been 6 days since the last injection, so they were looking for other causes of a high white count, like infection, more specifically another pneumonia.
Although, clearly not a doctor, I refuted their hypothesis. Without the presence of any symptoms, no fever, no coughing, no pain (other than the one in my ass for the past six months -- but that's just how I characterized my cancer in general from the beginning), I found it hard to believe that I had an infection. But nonetheless, my doctors, who are extremely cautious and proactive in their care, ordered some more tests, urine samples, more blood cultures and another chest CT scan.
On Wednesday, I was invited back for the results and yet more blood labs. This time my total white counts were down to 15,000 from 22,000 the day before. All the tests from Tuesday were negative, no signs of any infection. It looks like I was correct, the neupogen just had a delayed yet profound effect on my white blood count. I was cleared for Chemo and received infusion #10 on Thursday, September 10th, (by the way, had I not hit the bumps in the road earlier along the way, that was the date I was expecting to finish up).
But now my important numbers, include "1000", the neutrophil count needed to stay out of "trouble"; " 2", the total number of chemo infusions left; and "10/08/09" , the date, provided all else goes smoothly, that I will be receiving my 12th and final chemo infusion.
Funny how your perspective can change. so quickly. I just hope that soon enough my focus can go back to the more fun numbers like those of the Red Sox, Patriots and Tiger.
Until then, I will just keep my attention were it needs to be for the moment.
Thanks for reading, I will write again when there is more excitement to share. In the meantime, please go out and do something positive today, hug a loved one and count your blessings!
Glenn
Tuesday, August 25, 2009
Number Nine Went Fine
Today is Tuesday. It's been five days since my ninth chemo infusion. After a brief hiatus from treatment, (actually five weeks) I'm back on track. The pneumonia seems to be sufficiently beaten. As a precaution, the doctor is keeping me on a prophylactic dose of antibiotics, anti-fungal and ant-viral medicines, better safe than sorry, I guess.
All else is ok for now. I'm keeping my focus on the end (of treatments that is); only 3 more infusions / 6 weeks to go.
I won't ramble on, since I really don't have much more to share at this point.
Thanks for reading. I'll write again as we move forward. For now, please go out and do something positive today, hug a loved one and count your blesssings!
Glenn
All else is ok for now. I'm keeping my focus on the end (of treatments that is); only 3 more infusions / 6 weeks to go.
I won't ramble on, since I really don't have much more to share at this point.
Thanks for reading. I'll write again as we move forward. For now, please go out and do something positive today, hug a loved one and count your blesssings!
Glenn
Wednesday, August 12, 2009
Like a Boomerang!
A lot has transpired since my last entry – I just haven’t had the energy to get it down on paper (or in cyberspace) until now.
My hospital stay was short lived, admitted on Tuesday, released for good behavior on Wednesday. Unfortunately, they pulled the trigger a little too soon, and like a boomerang, I was back in a hospital bed on Thursday. This time I was their welcomed guest until Sunday evening.
The purpose of the hospitalization was largely to find the cause of my fever, isolate the infection and then aggressively treat it with IV antibiotics. They felt the infection may be in my lungs, but the chest x-ray previously performed, was inconclusive. So, off to the CAT Scan table for a chest CT. This didn’t show much either.
In an effort to rule out a viral infection, or dare I say, Swine Flu, they sent a representative from their infectious disease center to administer a “nasal swab”. I must say, if you’ve never experienced a nasal swab, I would strongly recommend that you don’t…unequivocally, I would rate this as one of the most intrusive and uncomfortable procedures I’ve experienced in the past few months -- (without the benefit of anesthesia).
On the surface, it seems quite harmless. Some guy comes in with a long Q-Tip and wants to swab the inside of my nose…ok, big deal. In reality, I think he somehow transformed the Q-tip into a Louisville Slugger and was intent on getting brain tissue samples. Ouch!
To add insult to injury, until the results come back (about 24hrs), you are presumed to be infected and contagious, therefore quarantined to your room. They pasted a warning on my door that any visitors must take proper precautions and dress in full protective gear. It was pretty comical, the same nurses and doctors who were coming into see me 15 minutes before (dressed in normal garb), were now outfitted in attire reminiscent of Chernobyl. Fortunately, the results came back within 24hrs and I was declared virus-free, so off came the gowns and masks.
The fever still remained at about 101F. So the doctor ordered another test to get a closer look at my lungs. This time they would do a Bronchoscopy. I’ve had this test before, and it wasn’t one of my favorites… During this test, they insert a tube and camera down your throat and into your lungs to take a look around. The images are far more detailed than you can get on a CT scan, plus while they’re in there, they’re able to flush the lungs with saline, collect a sample and then culture it to see if anything is growing (the source of the infection).
Well indeed there was stuff growing, the bronchoscopy came back positive for PCP, Pneumocystis pneumonia. This is an opportunistic strain of pneumonia that lurks deep within and attacks when your immune system is sufficiently depleted and cannot defend itself.
So at last, we found the source of the infection and fever and could start to treat it with the proper antibiotics. I was placed on a heavy dose of Bactrim , first by IV, 3 times a day while in the hospital, and then sent home with a 21 day supply in pill form. The Bactrim, coupled with a daily regimen of Prednisone (a steroid to reduce the inflammation in my lungs), Fluconazole (an anti-fungal drug) and Acyclovir (an anti-viral drug) should pack enough punch to rid my body of the dreaded and quite often feared PCP!
The only downside (and I’m not sure if it really is a true downside) is that the doctor has suspended my chemo while trying to fight off the PCP, since the chemo would only further deplete my immune system and allow the PCP more opportunity to run amok…
The medical team is closely monitoring my blood levels and so far all is good. Estimates are to resume chemo in a couple of weeks. From there, it’s just 4 more infusions – or 8 weeks to the finish line --- barring any more surprises.
Thanks for reading. I’ll post again when there is more to tell. In the meantime, go out and do something positive today, hug a loved one and count your blessings!
Glenn
My hospital stay was short lived, admitted on Tuesday, released for good behavior on Wednesday. Unfortunately, they pulled the trigger a little too soon, and like a boomerang, I was back in a hospital bed on Thursday. This time I was their welcomed guest until Sunday evening.
The purpose of the hospitalization was largely to find the cause of my fever, isolate the infection and then aggressively treat it with IV antibiotics. They felt the infection may be in my lungs, but the chest x-ray previously performed, was inconclusive. So, off to the CAT Scan table for a chest CT. This didn’t show much either.
In an effort to rule out a viral infection, or dare I say, Swine Flu, they sent a representative from their infectious disease center to administer a “nasal swab”. I must say, if you’ve never experienced a nasal swab, I would strongly recommend that you don’t…unequivocally, I would rate this as one of the most intrusive and uncomfortable procedures I’ve experienced in the past few months -- (without the benefit of anesthesia).
On the surface, it seems quite harmless. Some guy comes in with a long Q-Tip and wants to swab the inside of my nose…ok, big deal. In reality, I think he somehow transformed the Q-tip into a Louisville Slugger and was intent on getting brain tissue samples. Ouch!
To add insult to injury, until the results come back (about 24hrs), you are presumed to be infected and contagious, therefore quarantined to your room. They pasted a warning on my door that any visitors must take proper precautions and dress in full protective gear. It was pretty comical, the same nurses and doctors who were coming into see me 15 minutes before (dressed in normal garb), were now outfitted in attire reminiscent of Chernobyl. Fortunately, the results came back within 24hrs and I was declared virus-free, so off came the gowns and masks.
The fever still remained at about 101F. So the doctor ordered another test to get a closer look at my lungs. This time they would do a Bronchoscopy. I’ve had this test before, and it wasn’t one of my favorites… During this test, they insert a tube and camera down your throat and into your lungs to take a look around. The images are far more detailed than you can get on a CT scan, plus while they’re in there, they’re able to flush the lungs with saline, collect a sample and then culture it to see if anything is growing (the source of the infection).
Well indeed there was stuff growing, the bronchoscopy came back positive for PCP, Pneumocystis pneumonia. This is an opportunistic strain of pneumonia that lurks deep within and attacks when your immune system is sufficiently depleted and cannot defend itself.
So at last, we found the source of the infection and fever and could start to treat it with the proper antibiotics. I was placed on a heavy dose of Bactrim , first by IV, 3 times a day while in the hospital, and then sent home with a 21 day supply in pill form. The Bactrim, coupled with a daily regimen of Prednisone (a steroid to reduce the inflammation in my lungs), Fluconazole (an anti-fungal drug) and Acyclovir (an anti-viral drug) should pack enough punch to rid my body of the dreaded and quite often feared PCP!
The only downside (and I’m not sure if it really is a true downside) is that the doctor has suspended my chemo while trying to fight off the PCP, since the chemo would only further deplete my immune system and allow the PCP more opportunity to run amok…
The medical team is closely monitoring my blood levels and so far all is good. Estimates are to resume chemo in a couple of weeks. From there, it’s just 4 more infusions – or 8 weeks to the finish line --- barring any more surprises.
Thanks for reading. I’ll post again when there is more to tell. In the meantime, go out and do something positive today, hug a loved one and count your blessings!
Glenn
Wednesday, July 29, 2009
A Bump in the Road
I am writing this blog entry from room 1180 in the Beth Israel Deaconess Medical Center. Even though the view of Fenway Park and the Boston Skyline rivals that of a 5-star hotel, A hospital stay was not in my plans for this week.
The events leading up to my stay transpired rather swiftly. On Monday night, I noticed my throat was getting sore again and I felt a bit "warm" (that's medical jargon for a fever) The thermometer confirmed my assumption and I was indeed running a fever of 100.7F.
I wasn't overly concerned and since I was already scheduled to be at the hospital for an echocardiogram on Tuesday morning, I thought I could stop in after to see the doc, get a quick prescription for an antibiotic and be on my way.
No such luck.
Evidently a fever over 100 freaks everybody out around here. After a full set of blood labs, throat culture, and chest x-ray, they started me on IV antibiotics.
It turns out that my white blood count is extremely low, so they had to give me an injection of Neupogen. This medication stimulates the blood system (bone marrow) to make white blood cells, helping you fight infections.
So for the time being, it looks like my immune system is too weak for the "outside world", so they admitted me on Tuesday and I'll be their guest for the next couple days so they can continue the IV antibiotics and monitor my counts around the clock.
Even though the surprise hospital stay is a bit inconvenient, I am grateful that my doctors are so thorough and proactive with my care.
Well, that's it for today (unless something exciting happens!!!). Thanks for reading. I'll write again when I have something meaningful to share. Now, as I always request, please go out and do something positive today, hug a loved one and count your blessings!
Glenn
The events leading up to my stay transpired rather swiftly. On Monday night, I noticed my throat was getting sore again and I felt a bit "warm" (that's medical jargon for a fever) The thermometer confirmed my assumption and I was indeed running a fever of 100.7F.
I wasn't overly concerned and since I was already scheduled to be at the hospital for an echocardiogram on Tuesday morning, I thought I could stop in after to see the doc, get a quick prescription for an antibiotic and be on my way.
No such luck.
Evidently a fever over 100 freaks everybody out around here. After a full set of blood labs, throat culture, and chest x-ray, they started me on IV antibiotics.
It turns out that my white blood count is extremely low, so they had to give me an injection of Neupogen. This medication stimulates the blood system (bone marrow) to make white blood cells, helping you fight infections.
So for the time being, it looks like my immune system is too weak for the "outside world", so they admitted me on Tuesday and I'll be their guest for the next couple days so they can continue the IV antibiotics and monitor my counts around the clock.
Even though the surprise hospital stay is a bit inconvenient, I am grateful that my doctors are so thorough and proactive with my care.
Well, that's it for today (unless something exciting happens!!!). Thanks for reading. I'll write again when I have something meaningful to share. Now, as I always request, please go out and do something positive today, hug a loved one and count your blessings!
Glenn
Friday, July 24, 2009
A Relatively Uneventful Week
Last Thursday, July 16th, was chemo #8 out of 12. The day started with another pulmonary function test to measure the effects of one of the chemo drugs, bleomycin, on my lung function. As mentioned in my last entry, it is a common side effect for bleomycin to reduce the lungs' ability to diffuse the oxygen into the bloodstream. As with the previous test, the limits were reduced, so once again, chemo was administered without the bleomycin.
The reduced oxygen levels presented a new set of challenges, an increased level of fatigue, headaches and shortness of breath.
To rectify the breathing issue, the doctors prescribed a course of steroids to help reduce the inflammation in my lungs. After 5 days of steroids, I felt much better, could breathe more easily and had regained some lost strength -- I just now run the risk of failing my drug test for the MLB!
My weekly hospital visit yesterday showed good white blood counts -- also a beneficiary of the steroid treatments. The only downside is that the increased steroids in my system, combined with an already reduced immune function set the stage for a fungal infection to grow in my throat. So, to prevent me from sprouting mushrooms, I am now on a five day course of yet another drug, fluconazole -- this should do the trick and clear up my throat in short order.
Next on the docket is an echo-cardiogram on Tuesday and then yet another pulmonary function test on Thursday, before Chemo treatment #9.
At this point, I can almost see the light at the end of the tunnel. I try to focus on the positive -- how far I've come so far and the relatively short duration of treatment still remaining. If all continues to go well, my last treatment will be September 10th. There are certainly still good days and "less than" good days, but with the continued support of family and friends, we'll keep plugging forward.
Well, that's it for today. Thanks for reading. I'll write again when I have something meaningful to share. Now go out and do something positive today, hug a loved one and count your blessings!
Glenn
The reduced oxygen levels presented a new set of challenges, an increased level of fatigue, headaches and shortness of breath.
To rectify the breathing issue, the doctors prescribed a course of steroids to help reduce the inflammation in my lungs. After 5 days of steroids, I felt much better, could breathe more easily and had regained some lost strength -- I just now run the risk of failing my drug test for the MLB!
My weekly hospital visit yesterday showed good white blood counts -- also a beneficiary of the steroid treatments. The only downside is that the increased steroids in my system, combined with an already reduced immune function set the stage for a fungal infection to grow in my throat. So, to prevent me from sprouting mushrooms, I am now on a five day course of yet another drug, fluconazole -- this should do the trick and clear up my throat in short order.
Next on the docket is an echo-cardiogram on Tuesday and then yet another pulmonary function test on Thursday, before Chemo treatment #9.
At this point, I can almost see the light at the end of the tunnel. I try to focus on the positive -- how far I've come so far and the relatively short duration of treatment still remaining. If all continues to go well, my last treatment will be September 10th. There are certainly still good days and "less than" good days, but with the continued support of family and friends, we'll keep plugging forward.
Well, that's it for today. Thanks for reading. I'll write again when I have something meaningful to share. Now go out and do something positive today, hug a loved one and count your blessings!
Glenn
Saturday, July 4, 2009
Last week, lots of testing, this week Chemo Dose 7
The last week in June was filled with a series of testing to gauge my disease as well as to monitor how well my body is tolerating the toxic side effects of the chemotherapy drugs.
The first test was a PET / CT Scan. PET /CT stands for Positron Emission Tomography / Computed Tomography . This test is used to scan the body for any cancer "hot spots".
It is an interesting test whereas it is almost like a reverse X-Ray since the radiation comes from my body and not from the scanning device.
In preparation for the exam, I was instructed to eliminate all carbohydrates from my diet the night before the test. So dinner consisted of only high fat, high protein foods. I guess this would be OK if you are an Atkins fan, but the meal left me feeling a bit greasy...
The next morning at the hospital, I was given a drink called ClearScan to consume. This is a thick canola oil based drink with a hint of a metallic after taste, YUK! (I think this could be vastly improved if simply entrusted to the creativity of Ben & Jerry's)...But as designed, the ClearScan races through the body and is absorbed by areas of inflammation (potential cancer/growths/ infections etc). Oh and by the way, since it is oil based, it also "races through the body", but that would be more appropriate content for another type of Blog (perhaps entitled "The Straight Flush" -- no reference to Poker there) -- but we're above that type of humor here...
About an hour after the drink, The next phase began. A medical technician took me into a small room and injected me with gamma radiation. This was now my third PET Scan and third injection of gamma radiation in the last few months, (so in the back of my mind I keep wondering how much more gamma radiation until I spontaneously bulge out of my clothes, turn green and display super-hero tendencies).
After another hour waiting for the the gamma radiation to sufficiently circulate throughout my system, I was then led to the scanning room. The PET Scan looks similar to a CT Scan device. You lay flat on your back and are strapped onto a narrow bed that then retracts under a large donut shaped scanning device. The actual scan is painless and only lasted 25 minutes.
I had a previous PET Scan just a few weeks ago, and it showed new inflammation on three lymph nodes in my neck, however at that time, I also had strep throat, so the doctors felt this finding was related to the infection and not likely new cancer sites. That was the main reasoning to repeat this testing so soon.
The GOOD NEWS is that this PET Scan came back as clear. The lymph nodes in my neck now appear normal and the original incision site in my chest appears to be disease-free. VERY ENCOURAGING NEWS INDEED!
So, onto the next test, a Head CT. This was ordered as a follow-up to an MRI I recently had on my brain. I've been experiencing some headaches over the past several weeks, a couple with the intensity of migraines. The doctor felt the headaches are likely chemo-induced, but didn't want to guess, so he ordered the tests.
The original MRI showed "something" on my skull, but most likely, nothing of significance. HMMM, that sounded much too familiar to provide me with any peace of mind (no pun intended -- that would be "piece" of mind). If you remember, that's kind of how this whole mess started, when radiology read my chest x-rays back in November and said it looked like "just a shadow". That "shadow" turned out to be a lymphoma-filled thymus gland propelling this reluctant traveller into my current journey through the surreal.
So anyway, my Oncologist, ordered a head CT, with a contrast dye, to get a closer, more defined view of this "something" on my skull. As it turns out, it's OK. It was diagnosed as a "hemangioma", a benign cluster of blood vessels, that likely have been there since birth and as I've been told, show no sign of any risk. So more good news.
The third and final series of tests last week were three pulmonary function tests. These are routinely and periodically administered to measure the impact that the chemotherapy is having on my lungs. One of the chemo drugs I'm taking, Bleomycin, has been noted to cause pulmonary toxicity and lung scarring, so it is important to repeat these tests often. This was my third time taking the Pulmonary Function Test (PFT).
The three tests comprising the PFT measure spirometry, lung volume and diffusion capacity.
Spirometry measures airflow, by measuring how much air you exhale, and how quickly.
Lung volume measures the amount of air in the lungs without forcibly blowing out.
Testing the diffusion capacity allows the doctor to estimate how well my lungs move oxygen from the air into the bloodstream. This is an area that the Belomycin can adversely affect.
So the results of the PFTs this time were OK for the first two tests, but not as good for the third. It is not definite (nothing seems to be in medicine) but it appears that the Bleomycin may be having an impact on how well my lungs transfer oxygen into my bloodstream.
As a precaution, the doctor eliminated the Bleomycin from my chemo cocktail during Thursday's treatment. I will have yet another series of Pulmonary Function Tests in two weeks, prior to my next scheduled chemo session to re-evaluate my diffusion capacity and determine if my levels have returned to a safe enough range to re-introduce the Bleomycin to my system.
On a positive note, the past couple of days since treatment, sans Bleomycin, have been tolerated better, slightly less nausea, less irritability and better ability to sleep for more than 15 minute intervals!
Well, that's it for today. Thanks for reading. I'll write again when I have something meaningful to share. Now go out and do something positive today, hug a loved one and count your blessings!
Enjoy the holiday weekend!
Glenn
The first test was a PET / CT Scan. PET /CT stands for Positron Emission Tomography / Computed Tomography . This test is used to scan the body for any cancer "hot spots".
It is an interesting test whereas it is almost like a reverse X-Ray since the radiation comes from my body and not from the scanning device.
In preparation for the exam, I was instructed to eliminate all carbohydrates from my diet the night before the test. So dinner consisted of only high fat, high protein foods. I guess this would be OK if you are an Atkins fan, but the meal left me feeling a bit greasy...
The next morning at the hospital, I was given a drink called ClearScan to consume. This is a thick canola oil based drink with a hint of a metallic after taste, YUK! (I think this could be vastly improved if simply entrusted to the creativity of Ben & Jerry's)...But as designed, the ClearScan races through the body and is absorbed by areas of inflammation (potential cancer/growths/ infections etc). Oh and by the way, since it is oil based, it also "races through the body", but that would be more appropriate content for another type of Blog (perhaps entitled "The Straight Flush" -- no reference to Poker there) -- but we're above that type of humor here...
About an hour after the drink, The next phase began. A medical technician took me into a small room and injected me with gamma radiation. This was now my third PET Scan and third injection of gamma radiation in the last few months, (so in the back of my mind I keep wondering how much more gamma radiation until I spontaneously bulge out of my clothes, turn green and display super-hero tendencies).
After another hour waiting for the the gamma radiation to sufficiently circulate throughout my system, I was then led to the scanning room. The PET Scan looks similar to a CT Scan device. You lay flat on your back and are strapped onto a narrow bed that then retracts under a large donut shaped scanning device. The actual scan is painless and only lasted 25 minutes.
I had a previous PET Scan just a few weeks ago, and it showed new inflammation on three lymph nodes in my neck, however at that time, I also had strep throat, so the doctors felt this finding was related to the infection and not likely new cancer sites. That was the main reasoning to repeat this testing so soon.
The GOOD NEWS is that this PET Scan came back as clear. The lymph nodes in my neck now appear normal and the original incision site in my chest appears to be disease-free. VERY ENCOURAGING NEWS INDEED!
So, onto the next test, a Head CT. This was ordered as a follow-up to an MRI I recently had on my brain. I've been experiencing some headaches over the past several weeks, a couple with the intensity of migraines. The doctor felt the headaches are likely chemo-induced, but didn't want to guess, so he ordered the tests.
The original MRI showed "something" on my skull, but most likely, nothing of significance. HMMM, that sounded much too familiar to provide me with any peace of mind (no pun intended -- that would be "piece" of mind). If you remember, that's kind of how this whole mess started, when radiology read my chest x-rays back in November and said it looked like "just a shadow". That "shadow" turned out to be a lymphoma-filled thymus gland propelling this reluctant traveller into my current journey through the surreal.
So anyway, my Oncologist, ordered a head CT, with a contrast dye, to get a closer, more defined view of this "something" on my skull. As it turns out, it's OK. It was diagnosed as a "hemangioma", a benign cluster of blood vessels, that likely have been there since birth and as I've been told, show no sign of any risk. So more good news.
The third and final series of tests last week were three pulmonary function tests. These are routinely and periodically administered to measure the impact that the chemotherapy is having on my lungs. One of the chemo drugs I'm taking, Bleomycin, has been noted to cause pulmonary toxicity and lung scarring, so it is important to repeat these tests often. This was my third time taking the Pulmonary Function Test (PFT).
The three tests comprising the PFT measure spirometry, lung volume and diffusion capacity.
Spirometry measures airflow, by measuring how much air you exhale, and how quickly.
Lung volume measures the amount of air in the lungs without forcibly blowing out.
Testing the diffusion capacity allows the doctor to estimate how well my lungs move oxygen from the air into the bloodstream. This is an area that the Belomycin can adversely affect.
So the results of the PFTs this time were OK for the first two tests, but not as good for the third. It is not definite (nothing seems to be in medicine) but it appears that the Bleomycin may be having an impact on how well my lungs transfer oxygen into my bloodstream.
As a precaution, the doctor eliminated the Bleomycin from my chemo cocktail during Thursday's treatment. I will have yet another series of Pulmonary Function Tests in two weeks, prior to my next scheduled chemo session to re-evaluate my diffusion capacity and determine if my levels have returned to a safe enough range to re-introduce the Bleomycin to my system.
On a positive note, the past couple of days since treatment, sans Bleomycin, have been tolerated better, slightly less nausea, less irritability and better ability to sleep for more than 15 minute intervals!
Well, that's it for today. Thanks for reading. I'll write again when I have something meaningful to share. Now go out and do something positive today, hug a loved one and count your blessings!
Enjoy the holiday weekend!
Glenn
Friday, June 19, 2009
Halfway There, 3 Months Down, 3 To Go
Yesterday, I received my 6th chemotherapy treatment, out of 12. The day was uneventful. As per the routine, my visit began with registering my vital signs - weight, temperature, heart rate, oxygen saturation levels and blood pressure – all were normal. From there, a quick blood draw (and relatively painless thanks to my “port”) to check liver and kidney functions and get a complete blood count. Again, fortunately all the results were within the acceptable ranges, given the circumstances, clearing the way and “qualifying” me to move forward with the day’s planned chemotherapy.
Chemotherapy has a significant impact on one’s immune system and white blood cells. Since the chemo drugs can’t decipher between cancer cells, and healthy cells, they do their best to kill everything. It’s been interesting to watch how my white blood cells react and the counts fluctuate from week to week throughout the cycles. The doctors have been tracking these counts to identify a pattern and some predictability as to when I hit my highs and lows within each cycle. The all important neutrophil counts are their main focus. Neutrophils are the part of your white blood cells that kill and digest microorganisms and fight infection. So when these are low, (almost always now), certain precautions need to be followed to limit my exposure to bacteria and potential illnesses. All food must be cooked to 160 degrees F (boy, I really miss the medium rare steaks!), fresh fruits and vegetables are off the menu too – it seems counter-intuitive, but evidently there’s just too much bacteria for my body to handle. And I also need to be careful about subjecting myself to large crowds and potentially sick people (way too obvious, but they find the need to keep reminding me of that). Hand sanitizer has become ubiquitous, at home, in the car and in my office.
Overall, I feel ok. I am able to function just fine on most days. However, I can now sense the gradual toxic accumulation of the chemo drugs. Nausea, peripheral neuropathy, and fatigue are all part of everyday life to some degree. I guess a small price to pay, with all things considered.
Hopefully, the next 6 treatments will be tolerated as well as the first 6 and I can then get back to the more enjoyable things in life (like medium rare steaks!).
I’ll write again when I have something worth sharing. Thank you for reading, and as I asked before, please go out and do something positive today, hug a loved one and count your blessings.
Glenn
Chemotherapy has a significant impact on one’s immune system and white blood cells. Since the chemo drugs can’t decipher between cancer cells, and healthy cells, they do their best to kill everything. It’s been interesting to watch how my white blood cells react and the counts fluctuate from week to week throughout the cycles. The doctors have been tracking these counts to identify a pattern and some predictability as to when I hit my highs and lows within each cycle. The all important neutrophil counts are their main focus. Neutrophils are the part of your white blood cells that kill and digest microorganisms and fight infection. So when these are low, (almost always now), certain precautions need to be followed to limit my exposure to bacteria and potential illnesses. All food must be cooked to 160 degrees F (boy, I really miss the medium rare steaks!), fresh fruits and vegetables are off the menu too – it seems counter-intuitive, but evidently there’s just too much bacteria for my body to handle. And I also need to be careful about subjecting myself to large crowds and potentially sick people (way too obvious, but they find the need to keep reminding me of that). Hand sanitizer has become ubiquitous, at home, in the car and in my office.
Overall, I feel ok. I am able to function just fine on most days. However, I can now sense the gradual toxic accumulation of the chemo drugs. Nausea, peripheral neuropathy, and fatigue are all part of everyday life to some degree. I guess a small price to pay, with all things considered.
Hopefully, the next 6 treatments will be tolerated as well as the first 6 and I can then get back to the more enjoyable things in life (like medium rare steaks!).
I’ll write again when I have something worth sharing. Thank you for reading, and as I asked before, please go out and do something positive today, hug a loved one and count your blessings.
Glenn
Friday, June 5, 2009
Book I, Genesis, In the Beginning (of my story -- not the Biblical version)
I figured that a good place to start would be in the beginning. Many of you know my story to some degree, but this can fill in the missing pieces. I'll try not to get too detailed as to make this blog like "War and Peace", just give you the highlights from November to today. But, beware since it has been 6+ months - this 1st entry could be long.
It all started with a cough that developed in early November 2008. In December, I finally went to the doctor to have him check me out since the cough had now persisted for over a month . The cough had gone from a dry, nuisance cough to a deeper more "productive" cough, so I thought it was best to get the advice of my PCP (and perhaps some antibiotics).
Upon examination, the doctor felt there a good chance of pneumonia and prescribed a Z-Pack and sent me for a chest x-ray. Pneumonia was confirmed, but the radiologist also saw something irregular on the x-ray...looked like a shadow on my heart and he suggested another chest x-ray after the pneumonia had cleared.
A couple of weeks later, I went for the follow-up x-ray and Dr.'s visit. At this point I received good news. The antibiotics had done their job and my lungs were clear from the pneumonia. The radiologists report said that after reviewing the 2nd x-ray, they felt the shadow on my heart, was just a shadow -- perhaps due to the angle of the x-ray - and since I did not have any cardiac related history nor symptoms, it was likely nothing for concern.
I felt like I dodged a bullet there and went on with my life...for a couple more weeks anyway. The original, dry persistent cough was still there, so back to the Dr. I went. He seemed a bit perplexed and thought that there may be some residual inflammation from the pneumonia. He put me on an inhaler along with the steroid prednisone to reduce the inflammation.
It was now late December and I was still coughing like I was in early November. The inhaler and prednisone had proven ineffective. I went back to the doctor and asked whether a CT Scan may be in order to check out my lungs in greater detail. He agreed that was a good next step and scheduled a CT Scan.
On January 7th, 2009 I reported to the MetroWest radiology department for my CT Scan. After filling out a ream of paperwork that contained my medical history and current prescription list (at that point, both very limited), I was greeted by the radiology technician who would be performing the CT Scan. As we entered the CT room, he asked me several follow-on questions, one which I thought odd at the moment. He asked "are you allergic to shellfish?", my knee jerk reaction was to answer his question with my own, "oh are we having lunch too?" We shared a quick chuckle and then he explained to me that to get better imaging of my chest and the vascular system, they would be injecting a dye (called contrast) into my system about half way through the CT scan.
The word "injecting" did not thrill me, because, even though I am not a doctor, I was pretty sure they needed to use a needle for that, and quite frankly, I don't like needles, at all! But I figured, I would just suck it up and get on with it. The radiologist tech then also said, "by the way, when I inject the contrast, you may feel a very warm, slightly uncomfortable sensation as the contrast flows through your body. First at the injection site, then in your chest and then in your groin"...he went on to say, "oh and you also may feel that your bladder has let loose, but that's just a sensation, it won't actually happen". Just great, I couldn't help to think that along with the hospital gowns, Depends should become standard issue for this test. Luckily, the needle turned out to be painless and the contrast, although warm, never produced the aforementioned sensation.
It took about a week or so for the results of the CT scan to get back to my doctor. When he called me, I could tell his tone was a bit more concerned. He said that the CT had clearly shown that the shadow on my heart was indeed not a shadow, but rather what he thought was an enlarged thymus gland. This was odd since the thymus gland is pretty much non-existent in adults. When you're a kid, it is responsible for helping to build your immune system by developing T-cells. As you approach adulthood, its function is complete and begins to atrophy, eventually shrinks to a very small bit of fatty tissue. In my case, the thymus was quite large, they estimated somewhere around 8cm x 4cm. The doctor wasn't quite sure what to make of it, but thought it could be "thymic hyperplasia" (an abnormal enlargement of the thymus gland) or a "thymoma" (a slow growing tumor within the thymus gland); but he was sure that I needed to see a thoracic surgeon to get this properly diagnosed.
My first step was to Google "thymic hyperplasia" and "thymoma" to try to get a better understanding of what they actually were, get my head around the likely treatment protocol and then inform Carolyn of the findings.
On January 20th Carolyn and I went to see a thoracic surgeon at the "Chest Disease Center" at the Beth Israel Deaconess Hospital in Boston. The surgeon said that it looked more like a thymoma, a tumor growing inside of the the thymus gland. He mentioned several other remote possibilities but felt it was likely a thymoma. The good news was that thymomas are typically benign 60-70% of the time.
We discussed treatment options and quickly agreed that surgery was the best alternative. The surgeon felt that there was a good chance that he could remove the mass with a minimally invasive, video camera assisted procedure through a couple of key hole size incisions...unless he couldn't get a clear view of the entire area, then we would go the traditional route, sternotomy.
I took the month of February to get all of my ducks in a row and then on March 4th I had surgery to remove the tumor and the thymus gland as well. Although they initially hoped to remove it through a minimally invasive procedure, in the end they had to perform a sternotomy (creating a 7 inch incision in the middle of my chest, cutting through the sternum, spreading ribs, etc.) to be able to safely and thoroughly access and remove all of the mass. It turned out to be even larger than the CT scan had estimated, 11cm x 10 cm x 4cm. They were able to remove all of the tumor, but the mass had also invaded the right phrenic nerve, so that had to be severed and removed as well. You have two phrenic nerves that connect to your diaphragm and control the expansion and contraction of the diaphragm and facilitate lung function. So, as a result, the right side of my diaphragm is now "paralyzed" and the lower and mid portion of my right lung are not working to full capacity. However, the surgeon feels that over time, my body will compensate and lung function will improve to the point where I won't notice the difference -short of trying to run a marathon. (...by the way, not in my plans anyway).
I was in the hospital for 6 days following surgery. It was a very slow, and painful recovery. Since my lung functions had been compromised I was sent home with oxygen (and a lot of pain meds). The Visiting Nurses came by regularly to check my vitals, inspect my incision and report on my overall progress.
On March 17th we had a follow up appointment with the surgeon. The results from pathology were in. Much to our surprise, the mass was not thymic hyperplasia or thymoma, the mass was malignant (cancer) and I was diagnosed with Hodgkin's Lymphoma. From there, I don't remember much of the conversation, because the rest of the words that followed were just white noise. I left with an appointment to see an Oncologist to discuss treatment options. What I thought was done and over with, was really just beginning.
On March 20th, Carolyn and I went to meet an oncologist within the The Hematologic Malignancies Department at Beth Israel Deaconess Hospital's Cancer Center. We were there for many hours mostly waiting to see the doctor and didn't realize that he was squeezing us in as a favor to his surgeon. He confirmed the results as being Hodgkin's Lymphoma.
He did a physical exam and didn't feel any lumps in the area of other glands throughout my body. However, a PET Scan and Bone Marrow Biopsy would be needed to give a more accurate depiction of what is going on elsewhere and stage the disease. In addition to these two tests I also had an echo-cardiogram and a pulmonary lung function test. These two tests act as a baseline assessment and will be monitored through chemotherapy, as the chemo can have some negative effects on the heart and lungs.
Completed the PET Scan and Echo-cardiogram on March 30th and the Bone Marrow biopsy (ouch) on the 31st. The result were quite favorable! No other signs of the disease in any other locations, chemotherapy will now begin to make sure it stays that way.
Throughout this whole ordeal, Carolyn and I have been very open with the kids (Julia 12, Paige 10, and Brett 8) about what is going on. We try to share as much information as possible so they understand and can feel comfortable with what they can at their respective ages. We felt that it was so important that they understand that even though I have cancer, the type of cancer is treatable and has a very high cure rate, as high as 90%. We've discussed chemotherapy and what they can expect as potential side-effects. I believe that Carolyn may have already shared this story with many of you, but it's a classic, so definitely worth repeating.
One night, right before I started chemo, Paige, age 10, and I were reviewing the information sheets on each of the 4 chemotherapy drugs that I would be receiving. Previously, she was most concerned with the potential of me losing my hair, but she's starting to deal with that. However, we got to another section of the paper and in bold print, one of the side effects of the drugs jumped out at her, it said "Ability to have children may be affected by this medicine". I could see the concern on her face growing and then she quietly asked, "Does this mean that Julia, Brett and I will have to leave?" After about ten minutes of laughter, I reassured her that they could stay, but not to expect any new siblings...funny. Kids are great. At the end of the day, that's what keeps me going.
On April 7th, I began my first chemotherapy session. I will have 12 treatments, one every-other week for the next 6 months. The chemo "cocktail" is comprised of 4 different drugs, all pretty toxic and most of which cause nausea, so keeping that in check, will be a top priority. After the first treatment, I chose to switch my visits to Thursdays, so I could have the weekend to recoup and hopefully get into the office the following week. Before each chemo treatment and on the off-weeks, I need to have my blood drawn so they can check my blood cell counts, kidney and liver functions etc. As I mention earlier, I don't like needles, but I really really don't like having my blood drawn.
The 1st day of chemo was unpleasant to say the least. First we started with the blood draw. Within a couple of minutes following my blood draw, my blood pressure dropped to somewhere around 69/30. The girl taking my vitals, asked if I was OK and then went to tell the nurse... well I took about 5 steps back to my seat, the nurse came over, said I didn't look too good and then the next thing I knew was on my knees, on the floor. It was a first, but apparently I had fainted -- see, I told you I really really don't like having my blood drawn. They moved me to a wheel chair and then a reclining chair, got my feet elevated and gave me some juice. Within minutes I had pretty much every nurse in the place surrounding me to make sure I wasn't going to code on them. It probably took another couple of minutes and my blood pressure was back to normal.
To be on the safe side, the doctor ordered an EKG, which was fine, and then we moved on to chemo. The first attempt to find a vein was extraordinarily painful. They like to start as low as possible (near the hand) and then work their way up your arm. The first needle went into a large vein on the side of my wrist, right below my thumb. It felt like the nurse hit a nerve along the way. Fortunately or unfortunately, she was unable to get a sufficient blood return and decided to abandon this vein. Given the events of the day thus far, I think she was fairly spooked, so she called in some back-up and paged the "IV nurse". After a quick assessment of my veins, the IV nurse chose to move up to mid forearm --- with success.
So, based upon the day's experience and the anticipation of being stuck by a needle a minimum of 78 times over the next 6 months, I decided to have a porta-catheter (aka a "port") surgically implanted in my chest. This is a small device placed right under the skin in the upper chest. It has a small, round, drum-like receptacle with a tube that feeds directly into a large vein in my chest. All blood draws and chemo therapy infusions can go through the port, so this should reduce the number of needle sticks from 78 down to around 26, plus it will save the veins in my arms from the weekly abuse and toxicity of the chemo.
For the sake of time, and your blurred vision, I will now fast-forward to today, Friday June 5th.
Yesterday, I received my 5th chemotherapy infusion. The port has worked out great, needle sticks and blood draws have become non-issues and even though certainly not pleasant, they don't bother me any more.
The past 2 months have been filled with a lot of "stuff". More PET Scans, MRIs, Pulmonary Function tests and even a bout of Strep throat (I got that while already on antibiotics - go figure). I have learned to coordinate the 13 different prescriptions I've been given; when to take what, what I can't take when I'm taking another one and which one's to avoid if I want to be able to maintain any reasonable semblance of cognitive ability.
There are good days and there are not-so-good days, but as a whole, the side effects have been manageable. The anti-nausea meds have been fairly effective. So far, there's been only one day where I found myself counting bathroom floor tiles as I marveled about the convenience of indoor plumbing. And on that day, I think the vomiting was more related to a migraine headache that I awoke with, rather than directly from the chemo.
The other side-effects are annoying, but I am learning to deal with them too: moderate hair loss, peripheral neuropathy and fatigue. My biggest challenge seems to be my inability to sleep. I am working on fixing that too, but in the meantime if you see a blog entry that was posted in the middle of the night, you'll know why.
Enough for today (actually way more than enough). Now, for anyone who has made it this far into this entry, go out and do something positive today, hug a loved one and count your blessings.
It all started with a cough that developed in early November 2008. In December, I finally went to the doctor to have him check me out since the cough had now persisted for over a month . The cough had gone from a dry, nuisance cough to a deeper more "productive" cough, so I thought it was best to get the advice of my PCP (and perhaps some antibiotics).
Upon examination, the doctor felt there a good chance of pneumonia and prescribed a Z-Pack and sent me for a chest x-ray. Pneumonia was confirmed, but the radiologist also saw something irregular on the x-ray...looked like a shadow on my heart and he suggested another chest x-ray after the pneumonia had cleared.
A couple of weeks later, I went for the follow-up x-ray and Dr.'s visit. At this point I received good news. The antibiotics had done their job and my lungs were clear from the pneumonia. The radiologists report said that after reviewing the 2nd x-ray, they felt the shadow on my heart, was just a shadow -- perhaps due to the angle of the x-ray - and since I did not have any cardiac related history nor symptoms, it was likely nothing for concern.
I felt like I dodged a bullet there and went on with my life...for a couple more weeks anyway. The original, dry persistent cough was still there, so back to the Dr. I went. He seemed a bit perplexed and thought that there may be some residual inflammation from the pneumonia. He put me on an inhaler along with the steroid prednisone to reduce the inflammation.
It was now late December and I was still coughing like I was in early November. The inhaler and prednisone had proven ineffective. I went back to the doctor and asked whether a CT Scan may be in order to check out my lungs in greater detail. He agreed that was a good next step and scheduled a CT Scan.
On January 7th, 2009 I reported to the MetroWest radiology department for my CT Scan. After filling out a ream of paperwork that contained my medical history and current prescription list (at that point, both very limited), I was greeted by the radiology technician who would be performing the CT Scan. As we entered the CT room, he asked me several follow-on questions, one which I thought odd at the moment. He asked "are you allergic to shellfish?", my knee jerk reaction was to answer his question with my own, "oh are we having lunch too?" We shared a quick chuckle and then he explained to me that to get better imaging of my chest and the vascular system, they would be injecting a dye (called contrast) into my system about half way through the CT scan.
The word "injecting" did not thrill me, because, even though I am not a doctor, I was pretty sure they needed to use a needle for that, and quite frankly, I don't like needles, at all! But I figured, I would just suck it up and get on with it. The radiologist tech then also said, "by the way, when I inject the contrast, you may feel a very warm, slightly uncomfortable sensation as the contrast flows through your body. First at the injection site, then in your chest and then in your groin"...he went on to say, "oh and you also may feel that your bladder has let loose, but that's just a sensation, it won't actually happen". Just great, I couldn't help to think that along with the hospital gowns, Depends should become standard issue for this test. Luckily, the needle turned out to be painless and the contrast, although warm, never produced the aforementioned sensation.
It took about a week or so for the results of the CT scan to get back to my doctor. When he called me, I could tell his tone was a bit more concerned. He said that the CT had clearly shown that the shadow on my heart was indeed not a shadow, but rather what he thought was an enlarged thymus gland. This was odd since the thymus gland is pretty much non-existent in adults. When you're a kid, it is responsible for helping to build your immune system by developing T-cells. As you approach adulthood, its function is complete and begins to atrophy, eventually shrinks to a very small bit of fatty tissue. In my case, the thymus was quite large, they estimated somewhere around 8cm x 4cm. The doctor wasn't quite sure what to make of it, but thought it could be "thymic hyperplasia" (an abnormal enlargement of the thymus gland) or a "thymoma" (a slow growing tumor within the thymus gland); but he was sure that I needed to see a thoracic surgeon to get this properly diagnosed.
My first step was to Google "thymic hyperplasia" and "thymoma" to try to get a better understanding of what they actually were, get my head around the likely treatment protocol and then inform Carolyn of the findings.
On January 20th Carolyn and I went to see a thoracic surgeon at the "Chest Disease Center" at the Beth Israel Deaconess Hospital in Boston. The surgeon said that it looked more like a thymoma, a tumor growing inside of the the thymus gland. He mentioned several other remote possibilities but felt it was likely a thymoma. The good news was that thymomas are typically benign 60-70% of the time.
We discussed treatment options and quickly agreed that surgery was the best alternative. The surgeon felt that there was a good chance that he could remove the mass with a minimally invasive, video camera assisted procedure through a couple of key hole size incisions...unless he couldn't get a clear view of the entire area, then we would go the traditional route, sternotomy.
I took the month of February to get all of my ducks in a row and then on March 4th I had surgery to remove the tumor and the thymus gland as well. Although they initially hoped to remove it through a minimally invasive procedure, in the end they had to perform a sternotomy (creating a 7 inch incision in the middle of my chest, cutting through the sternum, spreading ribs, etc.) to be able to safely and thoroughly access and remove all of the mass. It turned out to be even larger than the CT scan had estimated, 11cm x 10 cm x 4cm. They were able to remove all of the tumor, but the mass had also invaded the right phrenic nerve, so that had to be severed and removed as well. You have two phrenic nerves that connect to your diaphragm and control the expansion and contraction of the diaphragm and facilitate lung function. So, as a result, the right side of my diaphragm is now "paralyzed" and the lower and mid portion of my right lung are not working to full capacity. However, the surgeon feels that over time, my body will compensate and lung function will improve to the point where I won't notice the difference -short of trying to run a marathon. (...by the way, not in my plans anyway).
I was in the hospital for 6 days following surgery. It was a very slow, and painful recovery. Since my lung functions had been compromised I was sent home with oxygen (and a lot of pain meds). The Visiting Nurses came by regularly to check my vitals, inspect my incision and report on my overall progress.
On March 17th we had a follow up appointment with the surgeon. The results from pathology were in. Much to our surprise, the mass was not thymic hyperplasia or thymoma, the mass was malignant (cancer) and I was diagnosed with Hodgkin's Lymphoma. From there, I don't remember much of the conversation, because the rest of the words that followed were just white noise. I left with an appointment to see an Oncologist to discuss treatment options. What I thought was done and over with, was really just beginning.
On March 20th, Carolyn and I went to meet an oncologist within the The Hematologic Malignancies Department at Beth Israel Deaconess Hospital's Cancer Center. We were there for many hours mostly waiting to see the doctor and didn't realize that he was squeezing us in as a favor to his surgeon. He confirmed the results as being Hodgkin's Lymphoma.
He did a physical exam and didn't feel any lumps in the area of other glands throughout my body. However, a PET Scan and Bone Marrow Biopsy would be needed to give a more accurate depiction of what is going on elsewhere and stage the disease. In addition to these two tests I also had an echo-cardiogram and a pulmonary lung function test. These two tests act as a baseline assessment and will be monitored through chemotherapy, as the chemo can have some negative effects on the heart and lungs.
Completed the PET Scan and Echo-cardiogram on March 30th and the Bone Marrow biopsy (ouch) on the 31st. The result were quite favorable! No other signs of the disease in any other locations, chemotherapy will now begin to make sure it stays that way.
Throughout this whole ordeal, Carolyn and I have been very open with the kids (Julia 12, Paige 10, and Brett 8) about what is going on. We try to share as much information as possible so they understand and can feel comfortable with what they can at their respective ages. We felt that it was so important that they understand that even though I have cancer, the type of cancer is treatable and has a very high cure rate, as high as 90%. We've discussed chemotherapy and what they can expect as potential side-effects. I believe that Carolyn may have already shared this story with many of you, but it's a classic, so definitely worth repeating.
One night, right before I started chemo, Paige, age 10, and I were reviewing the information sheets on each of the 4 chemotherapy drugs that I would be receiving. Previously, she was most concerned with the potential of me losing my hair, but she's starting to deal with that. However, we got to another section of the paper and in bold print, one of the side effects of the drugs jumped out at her, it said "Ability to have children may be affected by this medicine". I could see the concern on her face growing and then she quietly asked, "Does this mean that Julia, Brett and I will have to leave?" After about ten minutes of laughter, I reassured her that they could stay, but not to expect any new siblings...funny. Kids are great. At the end of the day, that's what keeps me going.
On April 7th, I began my first chemotherapy session. I will have 12 treatments, one every-other week for the next 6 months. The chemo "cocktail" is comprised of 4 different drugs, all pretty toxic and most of which cause nausea, so keeping that in check, will be a top priority. After the first treatment, I chose to switch my visits to Thursdays, so I could have the weekend to recoup and hopefully get into the office the following week. Before each chemo treatment and on the off-weeks, I need to have my blood drawn so they can check my blood cell counts, kidney and liver functions etc. As I mention earlier, I don't like needles, but I really really don't like having my blood drawn.
The 1st day of chemo was unpleasant to say the least. First we started with the blood draw. Within a couple of minutes following my blood draw, my blood pressure dropped to somewhere around 69/30. The girl taking my vitals, asked if I was OK and then went to tell the nurse... well I took about 5 steps back to my seat, the nurse came over, said I didn't look too good and then the next thing I knew was on my knees, on the floor. It was a first, but apparently I had fainted -- see, I told you I really really don't like having my blood drawn. They moved me to a wheel chair and then a reclining chair, got my feet elevated and gave me some juice. Within minutes I had pretty much every nurse in the place surrounding me to make sure I wasn't going to code on them. It probably took another couple of minutes and my blood pressure was back to normal.
To be on the safe side, the doctor ordered an EKG, which was fine, and then we moved on to chemo. The first attempt to find a vein was extraordinarily painful. They like to start as low as possible (near the hand) and then work their way up your arm. The first needle went into a large vein on the side of my wrist, right below my thumb. It felt like the nurse hit a nerve along the way. Fortunately or unfortunately, she was unable to get a sufficient blood return and decided to abandon this vein. Given the events of the day thus far, I think she was fairly spooked, so she called in some back-up and paged the "IV nurse". After a quick assessment of my veins, the IV nurse chose to move up to mid forearm --- with success.
So, based upon the day's experience and the anticipation of being stuck by a needle a minimum of 78 times over the next 6 months, I decided to have a porta-catheter (aka a "port") surgically implanted in my chest. This is a small device placed right under the skin in the upper chest. It has a small, round, drum-like receptacle with a tube that feeds directly into a large vein in my chest. All blood draws and chemo therapy infusions can go through the port, so this should reduce the number of needle sticks from 78 down to around 26, plus it will save the veins in my arms from the weekly abuse and toxicity of the chemo.
For the sake of time, and your blurred vision, I will now fast-forward to today, Friday June 5th.
Yesterday, I received my 5th chemotherapy infusion. The port has worked out great, needle sticks and blood draws have become non-issues and even though certainly not pleasant, they don't bother me any more.
The past 2 months have been filled with a lot of "stuff". More PET Scans, MRIs, Pulmonary Function tests and even a bout of Strep throat (I got that while already on antibiotics - go figure). I have learned to coordinate the 13 different prescriptions I've been given; when to take what, what I can't take when I'm taking another one and which one's to avoid if I want to be able to maintain any reasonable semblance of cognitive ability.
There are good days and there are not-so-good days, but as a whole, the side effects have been manageable. The anti-nausea meds have been fairly effective. So far, there's been only one day where I found myself counting bathroom floor tiles as I marveled about the convenience of indoor plumbing. And on that day, I think the vomiting was more related to a migraine headache that I awoke with, rather than directly from the chemo.
The other side-effects are annoying, but I am learning to deal with them too: moderate hair loss, peripheral neuropathy and fatigue. My biggest challenge seems to be my inability to sleep. I am working on fixing that too, but in the meantime if you see a blog entry that was posted in the middle of the night, you'll know why.
Enough for today (actually way more than enough). Now, for anyone who has made it this far into this entry, go out and do something positive today, hug a loved one and count your blessings.
Thursday, June 4, 2009
Up until this point, I have largely relied upon Carolyn to summarize my current state and then broadcast via email and telephone. She's done a fabulous job at this, but I want to give her a break for a while.
I'll do my best to blog on a consistent basis, but reality will dictate my writing schedule -- based largely on how I'm feeling that day and whether there really is anything worth sharing.
One more note. This is not meant to replace any live interaction. I know some of you have expressed hesitation in calling, because you did not want to intrude, etc. Please let me assure everyone that your calls are ALWAYS welcome and never intrusions. It's been quite touching to experience the overwhelming inflow of cards and well wishes in the past few months.
So, for that, thank you all for the cards, words of encouragement and prayers. It has made a huge difference in helping me keep my attitude right and keep this all in perspective.
I'll do my best to blog on a consistent basis, but reality will dictate my writing schedule -- based largely on how I'm feeling that day and whether there really is anything worth sharing.
One more note. This is not meant to replace any live interaction. I know some of you have expressed hesitation in calling, because you did not want to intrude, etc. Please let me assure everyone that your calls are ALWAYS welcome and never intrusions. It's been quite touching to experience the overwhelming inflow of cards and well wishes in the past few months.
So, for that, thank you all for the cards, words of encouragement and prayers. It has made a huge difference in helping me keep my attitude right and keep this all in perspective.
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