It has been two weeks since my last chemo treatment, and I am starting to see some improvements. My energy level is slowly increasing and some new "hair buds" are appearing on my head. Sometimes after chemotherapy new hair can be a different color or can be curly instead of straight. This is because some of the chemo drugs alter DNA. The change is usually temporary and typically lasts about a year before the hair returns to normal. At this point, it is hard to tell what my hair buds are going to become. In some types of light, they look blonde, in others they look my usual dark brown. I am hoping they turn out blonde and curly. I've done the dark brown thing; it would be interesting to have something else.
My neuropathy has not changed, which is to be expected. My new drug, Lyrica, makes the pain in my feet bearable, but I have recently developed an itchy rash that may be an allergic reaction to this new drug. The rash started on my forehead, then moved to my face, and is now on my forearms and neck. It is really strange because it literally moves throughout the day. My doctor asked me to do some experimenting by stopping the Lyrica to see if the rash goes away. If it doesn't the Lyrica is not the culprit. If it does go away I will have to weigh the pros and cons and make a decision of which one I would rather deal with.
Another side effect that seems to be lingering is my hoarse voice. I think that it has improved slightly, but it is still difficult to hear or understand what I say by the end of the day. If it continues, my oncologist will refer me to an ear-nose-throat doctor. Otherwise my port was removed on Monday so the only thing remaining is my final PET scan which is scheduled for Jan 9th. My oncologist is very confident that it will be negative.
On the bright side I am very excited about starting to feel better, especially my energy returning. Rebecca and I recently joined a gym so that I can start to strengthen my muscles which I feel have atrophied somewhat. I am excited about regaining my strength and finally begin enjoying this beautiful state to which I was so excited to return. I am looking forward to skiing during the winter, and then hiking and maybe rock climbing in the spring and summer. A lot of my colleagues at Adam enjoy rock climbing, and they have already tried to bring me along.
Rebecca and I are flying to Seattle on New Years Eve to celebrate both ending chemo and beating cancer. We are renting a car and will spend a couple of days in Portland as well. We may even take a day trip to Canada. We both have had a rough few months so we decided to take a week to recharge our batteries.
Today I also met with my gastroenterologist to discuss our plan for my future Crohn's management. Because of the immune suppressing chemotherapy, my Crohn's is practically in remission. So for now, I am not going to be on any medications. My upcoming PET scan will show the extent of my affected intestinal tract. More decisions will be made after my doctor reviews that scan. We discussed surgery to remove the affected area and start fresh, and we discussed drug management. One thing is certain: immunosuppressant drugs will not be considered unless all other options are exhausted.
Thursday, December 20, 2007
Tuesday, December 11, 2007
Going Back in Time
I realized the other day that I do not have a blog entry that explains how I was diagnosed and the symptoms that I experienced before my diagnosis. I would like to add that now while I still have a good memory of what occurred. The intention of this blog is to act as both an update for friends and family and as a record of my cancer experience so I can go back and refresh my memory for years to come.
My first experience of cancer started in August of 2007 when I still lived in Texas. I did not realize it at the time, but I began feeling my first symptom of cancer. I had a strong pain in my lower back that was activated every time I was standing up straight. Due to the abdominal pain I frequently experience with Crohn’s Disease, I have learned to tolerate a good deal of pain without complaint. However, this new pain drove me to hunch over or sit down after just a few minutes of standing. Even though the location of the pain was nothing I’d experienced before, I shrugged this new pain off as a symptom of the Crohn’s flare-up that I coincidentally was experiencing at that time.
The back pain continued as I packed boxes in preparation of the move and even as moving day arrived and it was time to load the Penske truck. Rebecca could sense how much the pain was affecting me, and she lovingly packed and loaded considerably more than her share of boxes. This pain continued throughout the move.
The next cancer symptom that I experienced started the week after I had arrived in Colorado. I began having night sweats that occurred most nights. I mistakenly attributed that as a side effect of the Prednisone I was taking to combat the Crohn’s flare up. Prednisone had caused me to sweat at night before, so this was logical. But the back pain continued and Rebecca finally was able to convince me to go to the emergency room one Saturday. When we arrived, I told the nurses and doctors that I expected the pain was Crohn’s related. They ordered a lower-abdomen CT scan to be done, and gave me pain meds and steroids intravenously. The CT scan showed enlarged lymph nodes, which the ER doctor instructed can be a result of a Crohn’s flare-up. However, the radiologist noted in the report that lymphoma could not be discounted. This was the first time that the possibility of cancer was considered, but because the steroids and pain meds relieved my pain; I was released from the ER with an order to see my gastroenterologist on Monday. The radiologist also ordered that I have a lymph node biopsy performed on one of the lower-abdomen enlarged lymph nodes, which would require visual assistance with a CT scan.
I visited my gastroenterologist as ordered, and we discussed different treatment options because obviously my Crohn’s was not being controlled. The only immediate actions taken were an addition of Entocort to the oral medications I was already on, and scheduling the CT-biopsy. One suggestion was made that I increase the dosages of Remicade and Azathioprine. Ironically, these two drugs may have caused my cancer, or at least aided in its spread.
Finally, a few days later, I began running fevers. On the Friday before Labor Day I had a fever of 103.1 after running a fever of 102.5 the night before. Rebecca convinced me to go to the emergency room again. I was embarrassingly admitted to the ER with a diagnosis of “Fever” in a room next to heart attack and car accident patients. Again, I instructed the nurses and doctors that I was experiencing a Crohn’s flare-up and that I suspected the fever was a result of a blockage causing an infection. Because of my short time between ER visits, the ER doctors decided to admit me to the hospital, even after a second CT scan showed no blockages.
I stayed at the hospital for the Labor Day weekend with little more done than fever and pain management due to reduced hospital staffing. The second CT scan was of my entire abdomen and showed enlarged lymph nodes scattered throughout my abdomen, which stumped the gastroenterologists. Finally, on Tuesday, the staffing needed to perform a biopsy was in attendance. They chose to perform the biopsy on a lymph node in my neck, because it was more accessible. The original plan was to biopsy a lower abdomen lymph node before the full CT scan showed the other possibilities. The majority of the duration of the biopsy was prep using the ultrasound probe to determine the optimal path to avoid large blood vessels. Only local anesthesia was given for the prodecure, which was quick and relatively painless. A large needle was inserted into my neck under ultrasound guidance. After an audible click, which felt like a little pressure within my neck, the biopsy was taken. The doctor took five separate biopsies, which is standard procedure. I was released from the hospital right after the biopsy, with an appointment with my primary care physician that Friday to discuss the results of the biopsy. I was feeling better, because the intravenous steroids had cured my Crohn’s flare-up.
Two days later, on the evening of Thursday, Sept 6th my gastroenterologist called me with the biopsy results. He informed me that I had Hodgkin’s Lymphoma and that he and my primary care physician would refer me to an oncologist. The next day I met my primary care physician for the first time, and was referred to Dr. Kenney. I made an appointment with him for the following Thursday, when he spent over an hour with Rebecca and I explaining Hodgkin’s to us and answering our questions.
The next week was a blur as Dr. Kenney insisted upon beginning treatment as quickly as possible. The following day he performed a bone marrow biopsy right there in his office. I simply laid down on my stomach with my pants slightly down to reveal my hip, and gripped on the examining bed to endure the pain. Despite the local anesthesia that was used, the pain was extraordinary. First, Dr. Kenney had to penetrate and core out a section of my hip bone, which he did by literally using his own body weight as force. That pain felt like extreme pressure on my hip. After he removed an inch long cylinder of my hip, he had to extract some marrow. I was worried when he gave warning of the pain that was coming especially after the pain that had already occurred. He did not disappoint. The pain from the marrow extraction felt like my soul was being sucked/yanked out of my body. Thankfully it was over very quickly, and I left with just a bandage across the small of my back.
That same day I visited the Advanced Reproductive Center at the University of Colorado Medical Center. Rebecca and I decided to bank before treatment, because chemotherapy can cause infertility that can sometimes be permanent. I returned on the following Monday as well as recommended to increase the chances of future success. That was an awkward experience.
Two days later, on Wednesday, I had both a MUGA scan and my first PET scan. The MUGA (MUltiple Gated Acquisition scan) is a scan of the heart where the ejection fraction of the left ventricle is measured. The left ventricle is the major pumping chamber of the heart so the ejection fraction a basic measure of the overall health of the heart. The MUGA is performed because Adriamycin can be toxic to the heart muscle, and can lead to heart failure. I will likely get another MUGA now that treatment is over, to determine if any damage has been done to my heart. The PET scan was also performed prior to chemotherapy to use as a baseline comparison to the PET scan after treatment.
The next day, Thursday Sept 20 was my first day of chemotherapy. The first week of treatment includes Nitrogen Mustard, which is very caustic to veins. At this point, my port had not yet been implanted, so the chemotherapy had to be given intravenously through a standard catheter. My veins in my right arm hurt for several weeks as a result of this treatment.
The following Monday, I had the port implanted. This procedure was done in radiology so the doctor could see the tube placement during the procedure. Again, only local anesthesia was given, so I was able to talk to the doctor during the procedure. It was not too painful, even after the anesthesia wore off, and it was definitely worth it.
Sometime early in the chemo regimen, I am not too sure when, my cancer symptoms stopped. I had experienced most of the classic symptoms including night sweats, unexplained fevers, and weight loss. By the time my cancer symptoms ceased, I had lost 20 lbs, going from 155 lbs to 135 lbs. I did not notice this symptom until I went to the emergency room because I don’t normally weigh myself very often. I did not experience persistent itching or the most common symptom of a noticeable lump caused by an enlarged lymph node. Typically, this is found in the neck or armpits. I did have one unusual symptom of pain in my lower back.
This brings me to about the time that I started the blog with my first entry during week three of the treatment.
My first experience of cancer started in August of 2007 when I still lived in Texas. I did not realize it at the time, but I began feeling my first symptom of cancer. I had a strong pain in my lower back that was activated every time I was standing up straight. Due to the abdominal pain I frequently experience with Crohn’s Disease, I have learned to tolerate a good deal of pain without complaint. However, this new pain drove me to hunch over or sit down after just a few minutes of standing. Even though the location of the pain was nothing I’d experienced before, I shrugged this new pain off as a symptom of the Crohn’s flare-up that I coincidentally was experiencing at that time.
The back pain continued as I packed boxes in preparation of the move and even as moving day arrived and it was time to load the Penske truck. Rebecca could sense how much the pain was affecting me, and she lovingly packed and loaded considerably more than her share of boxes. This pain continued throughout the move.
The next cancer symptom that I experienced started the week after I had arrived in Colorado. I began having night sweats that occurred most nights. I mistakenly attributed that as a side effect of the Prednisone I was taking to combat the Crohn’s flare up. Prednisone had caused me to sweat at night before, so this was logical. But the back pain continued and Rebecca finally was able to convince me to go to the emergency room one Saturday. When we arrived, I told the nurses and doctors that I expected the pain was Crohn’s related. They ordered a lower-abdomen CT scan to be done, and gave me pain meds and steroids intravenously. The CT scan showed enlarged lymph nodes, which the ER doctor instructed can be a result of a Crohn’s flare-up. However, the radiologist noted in the report that lymphoma could not be discounted. This was the first time that the possibility of cancer was considered, but because the steroids and pain meds relieved my pain; I was released from the ER with an order to see my gastroenterologist on Monday. The radiologist also ordered that I have a lymph node biopsy performed on one of the lower-abdomen enlarged lymph nodes, which would require visual assistance with a CT scan.
I visited my gastroenterologist as ordered, and we discussed different treatment options because obviously my Crohn’s was not being controlled. The only immediate actions taken were an addition of Entocort to the oral medications I was already on, and scheduling the CT-biopsy. One suggestion was made that I increase the dosages of Remicade and Azathioprine. Ironically, these two drugs may have caused my cancer, or at least aided in its spread.
Finally, a few days later, I began running fevers. On the Friday before Labor Day I had a fever of 103.1 after running a fever of 102.5 the night before. Rebecca convinced me to go to the emergency room again. I was embarrassingly admitted to the ER with a diagnosis of “Fever” in a room next to heart attack and car accident patients. Again, I instructed the nurses and doctors that I was experiencing a Crohn’s flare-up and that I suspected the fever was a result of a blockage causing an infection. Because of my short time between ER visits, the ER doctors decided to admit me to the hospital, even after a second CT scan showed no blockages.
I stayed at the hospital for the Labor Day weekend with little more done than fever and pain management due to reduced hospital staffing. The second CT scan was of my entire abdomen and showed enlarged lymph nodes scattered throughout my abdomen, which stumped the gastroenterologists. Finally, on Tuesday, the staffing needed to perform a biopsy was in attendance. They chose to perform the biopsy on a lymph node in my neck, because it was more accessible. The original plan was to biopsy a lower abdomen lymph node before the full CT scan showed the other possibilities. The majority of the duration of the biopsy was prep using the ultrasound probe to determine the optimal path to avoid large blood vessels. Only local anesthesia was given for the prodecure, which was quick and relatively painless. A large needle was inserted into my neck under ultrasound guidance. After an audible click, which felt like a little pressure within my neck, the biopsy was taken. The doctor took five separate biopsies, which is standard procedure. I was released from the hospital right after the biopsy, with an appointment with my primary care physician that Friday to discuss the results of the biopsy. I was feeling better, because the intravenous steroids had cured my Crohn’s flare-up.
Two days later, on the evening of Thursday, Sept 6th my gastroenterologist called me with the biopsy results. He informed me that I had Hodgkin’s Lymphoma and that he and my primary care physician would refer me to an oncologist. The next day I met my primary care physician for the first time, and was referred to Dr. Kenney. I made an appointment with him for the following Thursday, when he spent over an hour with Rebecca and I explaining Hodgkin’s to us and answering our questions.
The next week was a blur as Dr. Kenney insisted upon beginning treatment as quickly as possible. The following day he performed a bone marrow biopsy right there in his office. I simply laid down on my stomach with my pants slightly down to reveal my hip, and gripped on the examining bed to endure the pain. Despite the local anesthesia that was used, the pain was extraordinary. First, Dr. Kenney had to penetrate and core out a section of my hip bone, which he did by literally using his own body weight as force. That pain felt like extreme pressure on my hip. After he removed an inch long cylinder of my hip, he had to extract some marrow. I was worried when he gave warning of the pain that was coming especially after the pain that had already occurred. He did not disappoint. The pain from the marrow extraction felt like my soul was being sucked/yanked out of my body. Thankfully it was over very quickly, and I left with just a bandage across the small of my back.
That same day I visited the Advanced Reproductive Center at the University of Colorado Medical Center. Rebecca and I decided to bank before treatment, because chemotherapy can cause infertility that can sometimes be permanent. I returned on the following Monday as well as recommended to increase the chances of future success. That was an awkward experience.
Two days later, on Wednesday, I had both a MUGA scan and my first PET scan. The MUGA (MUltiple Gated Acquisition scan) is a scan of the heart where the ejection fraction of the left ventricle is measured. The left ventricle is the major pumping chamber of the heart so the ejection fraction a basic measure of the overall health of the heart. The MUGA is performed because Adriamycin can be toxic to the heart muscle, and can lead to heart failure. I will likely get another MUGA now that treatment is over, to determine if any damage has been done to my heart. The PET scan was also performed prior to chemotherapy to use as a baseline comparison to the PET scan after treatment.
The next day, Thursday Sept 20 was my first day of chemotherapy. The first week of treatment includes Nitrogen Mustard, which is very caustic to veins. At this point, my port had not yet been implanted, so the chemotherapy had to be given intravenously through a standard catheter. My veins in my right arm hurt for several weeks as a result of this treatment.
The following Monday, I had the port implanted. This procedure was done in radiology so the doctor could see the tube placement during the procedure. Again, only local anesthesia was given, so I was able to talk to the doctor during the procedure. It was not too painful, even after the anesthesia wore off, and it was definitely worth it.
Sometime early in the chemo regimen, I am not too sure when, my cancer symptoms stopped. I had experienced most of the classic symptoms including night sweats, unexplained fevers, and weight loss. By the time my cancer symptoms ceased, I had lost 20 lbs, going from 155 lbs to 135 lbs. I did not notice this symptom until I went to the emergency room because I don’t normally weigh myself very often. I did not experience persistent itching or the most common symptom of a noticeable lump caused by an enlarged lymph node. Typically, this is found in the neck or armpits. I did have one unusual symptom of pain in my lower back.
This brings me to about the time that I started the blog with my first entry during week three of the treatment.
Thursday, December 6, 2007
Final Chemo
I thought it would be fitting to have a picture of my final chemo treatment to compare with the first. There are some obvious differences to put it mildly!
I’M DONE!!!
This week was another rough week in comparison to weeks of the past. I am very fatigued all the time, my voice is slightly stronger than a whisper, and my neuropathy is difficult to deal with. But on the bright side, today was my last day of chemo, which means all of those things will be gone soon. Neuropathy is likely to last the longest, but it has improved slightly from when it was at its worst. It hurts to walk still, but at least I am sleeping a little better. Before there was enough sudden twinges of pain that it took me a long time to fall asleep. In the end I think fatigue just beat out the neuropathy and I would fall asleep. Today, my oncologist omitted the Vincristine from my treatment because he does not want the neuropathy to get any worse. He also gave me a prescription that should relieve some of the pain.
If my voice does not improve in the next few weeks my oncologist is going to refer me to an ear/nose/throat specialist to perform an indirect laryngoscopy, which is a minor and not too uncomfortable procedure during which he/she pulls at your tongue a little bit, and uses a small mirror to inspect your larynx and vocal cords.
What happens now? I am not so sure of that myself, as everything will depend on tests. I am getting another CBC test next week to determine if I need another transfusion after the last chemo treatment. After that I will have my port removed. Finally, I will have another PET scan. My doctor has already said that he cannot imagine a scenario in which I would have a positive PET scan since my last one was negative. If for some reason it does come back positive, most likely it would be a false positive and I would then get a biopsy. Only a positive biopsy would indicate that the chemo did not completely eliminate the cancer. This is also true down the road to signal a relapse.
But, I am very confident based on the information my oncologist has given me that the worst is behind me, and I will hopefully never have to deal with Lymphoma again.
If my voice does not improve in the next few weeks my oncologist is going to refer me to an ear/nose/throat specialist to perform an indirect laryngoscopy, which is a minor and not too uncomfortable procedure during which he/she pulls at your tongue a little bit, and uses a small mirror to inspect your larynx and vocal cords.
What happens now? I am not so sure of that myself, as everything will depend on tests. I am getting another CBC test next week to determine if I need another transfusion after the last chemo treatment. After that I will have my port removed. Finally, I will have another PET scan. My doctor has already said that he cannot imagine a scenario in which I would have a positive PET scan since my last one was negative. If for some reason it does come back positive, most likely it would be a false positive and I would then get a biopsy. Only a positive biopsy would indicate that the chemo did not completely eliminate the cancer. This is also true down the road to signal a relapse.
But, I am very confident based on the information my oncologist has given me that the worst is behind me, and I will hopefully never have to deal with Lymphoma again.
Wednesday, November 28, 2007
Nearing the End
Today Rebecca and I met with my oncologist. First we addressed my increased neuropathy. He decided to completely omit Vinblastine from my chemotherapy this week. Next week I am scheduled to get Vincristine which also causes neuropathy, and we may or may not omit that as well. Vinblastine is the larger culprit of the two, so hopefully we will just omit that. Obviously if we omit the drug, I am not able to get the benefits associated with it. But my neuropathy has gotten pretty bad, and it is painful to walk toward the end of the day. My doctor does not want it to get any worse, especially since it may last for a year. On rare occasions, it is permanent. I hope omitting the Vinblastine today will reduce the neuropathy, because I am really dreading having this sensation in my feet for up to a year.
We also discussed my voice. Again there is no definitive explanation, but the worst possibilities have been eliminated. There is no indication of lung damage which is a possible side effect of Bleomycin. Thrush is another possibility but there is no indication of that either. It could still be allergies, acid reflux, a bacteria infection, or a viral infection. Either way, I am likely to be stuck with a hoarse voice for the remainder of my chemo regimen plus however long it takes to recover.
We also discussed radiation. An absolute definitive answer was not made, but my oncologist specifically stated that if it were he or a family member he would opt to not radiate. The expanse of my cancerous lymph nodes was such that they would need to radiate a large area. This would greatly increase my risk of secondary cancers later in life. At this point, although not absolutely certain, I would be shocked if I end up getting radiation therapy.
We also discussed removing my port. I can get it removed whenever I wish. Typically, it is not left in long term (anticipating the possibility of a relapse) because there is a risk of developing a blood clot, and a small chance of infection. I will likely get the port removed two weeks after my final chemo treatment (week of Dec 17th). That week I will get another CBC to see if I need another transfusion. If I need one, I would get it that week, and then get the port removed. After the transfusion there would be no need for the port unless I have a relapse.
Finally, we discussed my post PET scan. The date of the scan is not yet set, but it will likely be in January. If the scan is negative, which is expected because my last scan was negative, I would get scans every six months to check for a relapse. If the scan is positive, my doctor said it would likely be a false positive and a biopsy would follow. Only a positive biopsy would prove that cancer still exists. Again, this is not likely.
Today was obviously a big day, and I am down to eight days until my final chemo treatment.
We also discussed my voice. Again there is no definitive explanation, but the worst possibilities have been eliminated. There is no indication of lung damage which is a possible side effect of Bleomycin. Thrush is another possibility but there is no indication of that either. It could still be allergies, acid reflux, a bacteria infection, or a viral infection. Either way, I am likely to be stuck with a hoarse voice for the remainder of my chemo regimen plus however long it takes to recover.
We also discussed radiation. An absolute definitive answer was not made, but my oncologist specifically stated that if it were he or a family member he would opt to not radiate. The expanse of my cancerous lymph nodes was such that they would need to radiate a large area. This would greatly increase my risk of secondary cancers later in life. At this point, although not absolutely certain, I would be shocked if I end up getting radiation therapy.
We also discussed removing my port. I can get it removed whenever I wish. Typically, it is not left in long term (anticipating the possibility of a relapse) because there is a risk of developing a blood clot, and a small chance of infection. I will likely get the port removed two weeks after my final chemo treatment (week of Dec 17th). That week I will get another CBC to see if I need another transfusion. If I need one, I would get it that week, and then get the port removed. After the transfusion there would be no need for the port unless I have a relapse.
Finally, we discussed my post PET scan. The date of the scan is not yet set, but it will likely be in January. If the scan is negative, which is expected because my last scan was negative, I would get scans every six months to check for a relapse. If the scan is positive, my doctor said it would likely be a false positive and a biopsy would follow. Only a positive biopsy would prove that cancer still exists. Again, this is not likely.
Today was obviously a big day, and I am down to eight days until my final chemo treatment.
Monday, November 26, 2007
Tryptophan and Chemo, a Tiring Combination!
This weekend I was able to get a lot of rest, which was greatly appreciated. Nausea was not a problem, and I was able to eat way too much at Thanksgiving dinner. The tiredness you feel with the combination of tryptophan and chemo is a unique experience! My chemo treatment on Wednesday went smoothly without any major side effects. My only concern is that my neuropathy has progressed, and the numbness in my feet has gotten worse. My voice has also become more and more hoarse each day. In the past, my voice would recover over night and in the morning it would sound normal. This morning, the first words that I spoke were hoarse and weak. By the end of the day, it is difficult to understand what I say.
This week my oncologist will likely reduce my dosage of Vincristine and Vinblastine for the last two chemo treatments. These are the drugs that cause neuropathy. Almost all patients on these drugs experience neuropathy, and most have their dosages reduced during chemotherapy. The dosage reduction will not be significant enough to threaten the cancer killing effectiveness, especially after 10 weeks at full dosage.
My voice, on the other hand, will likely remain hoarse until after my body is no longer being poisoned. My oncologist could not definitively determine what is the cause, but he ran some tests to rule out any possibilities that would be detrimental. The worst-case scenario, which has been ruled out, was that the Bleomycin was damaging my lungs. The likely cause is a viral or bacterial infection causing a nasal drip, which has affected my vocal chords. Another possibility is acid reflux that is common for chemo patients. To combat these possibilities, I am taking a daily antibacterial and a daily antiviral prescription. I also take Prilosec OTC for acid reflux. All of these are just not enough to cure the problem because of my weakened immune system. Oh, well, it is a small price to pay to kill the cancer.
This week my oncologist will likely reduce my dosage of Vincristine and Vinblastine for the last two chemo treatments. These are the drugs that cause neuropathy. Almost all patients on these drugs experience neuropathy, and most have their dosages reduced during chemotherapy. The dosage reduction will not be significant enough to threaten the cancer killing effectiveness, especially after 10 weeks at full dosage.
My voice, on the other hand, will likely remain hoarse until after my body is no longer being poisoned. My oncologist could not definitively determine what is the cause, but he ran some tests to rule out any possibilities that would be detrimental. The worst-case scenario, which has been ruled out, was that the Bleomycin was damaging my lungs. The likely cause is a viral or bacterial infection causing a nasal drip, which has affected my vocal chords. Another possibility is acid reflux that is common for chemo patients. To combat these possibilities, I am taking a daily antibacterial and a daily antiviral prescription. I also take Prilosec OTC for acid reflux. All of these are just not enough to cure the problem because of my weakened immune system. Oh, well, it is a small price to pay to kill the cancer.
Monday, November 19, 2007
No more Mustard Gas
My last dosage of mustard gas (Nitrogen Mustard) was given on Thursday. This chemo drug has thus far been the worst for inducing nausea. So far I have made it through the weekend without needing any anti-nausea medication. Hopefully this will be the last exposure to mustard gas of my lifetime!
My red blood cell count is much improved after the transfusion, although I am still below normal. Instead of a hematocrit level of 22.4% of total red blood cells, I was up to 33.0. Normal is between 35 and 60. My overall red blood cell count was lower than normal, but again an improvement. I still don’t feel any substantial improvement in energy, but I know I am better off after the transfusion.
This week I get chemo one day early, to avoid the Thanksgiving Holiday. I am taking Wednesday, Thursday, and Friday off of work. A nice long weekend will be greatly appreciated. My body needs the extra rest.
My red blood cell count is much improved after the transfusion, although I am still below normal. Instead of a hematocrit level of 22.4% of total red blood cells, I was up to 33.0. Normal is between 35 and 60. My overall red blood cell count was lower than normal, but again an improvement. I still don’t feel any substantial improvement in energy, but I know I am better off after the transfusion.
This week I get chemo one day early, to avoid the Thanksgiving Holiday. I am taking Wednesday, Thursday, and Friday off of work. A nice long weekend will be greatly appreciated. My body needs the extra rest.
Tuesday, November 13, 2007
Disappointment, Hoarseness, and Numbness
I received an infusion of two units of red blood cells on Friday morning. The process took over 4 hours and afterward I decided to take the rest of the day off of work. I had high hopes that the infusion would give me some of the strength that I have been lacking the last few weeks. So far, I have only felt a slight improvement. It has been over 4 days now, so I expect if I were going to notice a large improvement, I would have by now. I probably was a little over optimistic expecting a large improvement.
On Thursday I start the last third of chemotherapy. I also have another appointment with my oncologist that morning. I will try to get an answer regarding the cause of my hoarse voice. I do not have a soar throat, and it does not hurt to talk, but it is frustrating because it is difficult to communicate. It is possible that the hoarseness is no major concern and may just be something that I will have to get used to. Another symptom that I have had to adjust to is neuropathy. Neuropathy is nerve damage, which commonly results in numbness. My neuropathy is slight in my fingers and is only in my fingertips but is a little more extensive in my feet. The numbness makes walking interesting. It is difficult to explain, but it is not painful, just a unique feeling that is similar to when your feet get really cold. Typing and handwriting also feels very different with very little feeling in the tips of my fingers. If the numbness spreads or gets worse, my oncologist may reduce the amount of Vincristine and Vinblastine that I receive each week. Usually neuropathy is temporary and the feeling returns after chemotherapy, but occasionally it is permanent.
On Thursday I start the last third of chemotherapy. I also have another appointment with my oncologist that morning. I will try to get an answer regarding the cause of my hoarse voice. I do not have a soar throat, and it does not hurt to talk, but it is frustrating because it is difficult to communicate. It is possible that the hoarseness is no major concern and may just be something that I will have to get used to. Another symptom that I have had to adjust to is neuropathy. Neuropathy is nerve damage, which commonly results in numbness. My neuropathy is slight in my fingers and is only in my fingertips but is a little more extensive in my feet. The numbness makes walking interesting. It is difficult to explain, but it is not painful, just a unique feeling that is similar to when your feet get really cold. Typing and handwriting also feels very different with very little feeling in the tips of my fingers. If the numbness spreads or gets worse, my oncologist may reduce the amount of Vincristine and Vinblastine that I receive each week. Usually neuropathy is temporary and the feeling returns after chemotherapy, but occasionally it is permanent.
Thursday, November 8, 2007
Transfusion time
Today’s treatment was the last of the second third of my chemo regimen. After today I only have four more treatments left. Yeah!!! Before my treatment, as always, the nurses collected blood for a CBC. My white blood cell count was high, due to my Neulasta shot last Friday. My red blood cell count was again the lowest is has ever been. Normally, the red blood cell count should be between 4.00 and 6.00 million cells per cubic millimeter. My count was at 2.50. Red blood cells are divided into two categories: hemoglobin and hematocrit. A normal hemoglobin count is between 11.0 and 18.0 grams per deciliter. My count was at 8.0. A normal hematocrit count is between 35.0 and 60.0 percent of the total red blood cells. My hematocrit level was at 22.4%. What does all of this mean? I am getting a transfusion…tomorrow. My doctor is not a procrastinator; that is for sure! I am actually looking forward to the transfusion because my energy level has been decreasing steadily for the last few weeks and it has been harder and harder to do anything. I am looking forward to the extra energy that the donated blood cells should provide.
Thursday, November 1, 2007
PET Scan Images
These images are a little fuzzy, but you should be able to figure them out. Both scans are 3D frontal views from my head to my knees.
The first image is the PET scan from Sept 19th. The bright white areas are cancerous. As you can see, there are quite a lot of bright spots along my spine, with some larger areas near my heart. This image is a little misleading because it appears that I have some quite large masses, but in actuality, since this is a 3D image, some lymph nodes are stacked on top of one another making them look like one large clump. In the individual slices of the PET scan my doctor was able to measure the sizes of the lymph nodes and the largest clump was a little more than 5 centimeters.
The second image is the PET scan from Oct 29th. As you can see, almost all of the bright spots are gone along my spine. You should also notice that my skeleton is much brighter in this image. This is due to the production of blood cells, which attracts the radioactive isotope that in injected for the PET scan, and causes the brightness in the image. My bones have been in high blood cell production since starting chemo. I am not sure what is the cause of the bright spots that are almost symmetrical about my spine in this image. They don’t appear in the first image, so I don’t think it is cancer, but I don’t know what it is. I will have to ask my doctor.
This is a great visual that shows how effective my chemo has been.
Wednesday, October 31, 2007
I've got cancer on the run!
Today I met with my oncologist and we discussed the results of my recent PET/CT scan, and I have excellent news: the PET scan was negative. This means there was essentially no PET activity which means the cancer has been killed. My lymph nodes are almost back to normal size and even the large clumps of cancerous lymph nodes are no more. This is great news for my prognosis but it does not change my current chemotherapy treatment regimen. The last thing that we want to do now is claim victory and prematurely stop the attack. We need to continue as if the scan was never performed and pretend that we don’t know what my current status is. I am now half way through my chemo regimen.
I am going to try to post pictures of my PET/CT scan. I visited the radiology department at the hospital and a radiologist showed me a fused PET/CT image both from the scan I had before chemo and the one I had on Monday. The images I saw were amazing. Before chemo it appeared as though my entire chest was inundated with cancerous lymph nodes, and now those are all but gone. I am very excited about this recent news, and I would like for everyone to see it for himself or herself. Look for a post in the next few days with these pictures.
I am going to try to post pictures of my PET/CT scan. I visited the radiology department at the hospital and a radiologist showed me a fused PET/CT image both from the scan I had before chemo and the one I had on Monday. The images I saw were amazing. Before chemo it appeared as though my entire chest was inundated with cancerous lymph nodes, and now those are all but gone. I am very excited about this recent news, and I would like for everyone to see it for himself or herself. Look for a post in the next few days with these pictures.
Monday, October 29, 2007
I promise, I am not a Vampire!
I found it sort of strange that I was possibly going to need someone else’s blood so close to Halloween, but it turns out that I will not. My red blood cell count has gone up just enough to at least postpone a transfusion. However, as I continue in my chemo regimen, my red blood cell count has slowly been trending downward, despite the red blood cell booster shot I get every week. It is most likely only a matter of time before I will need a transfusion.
Today I also had a second PET scan. I will not discuss the results of this scan until Wednesday with my oncologist. I am looking forward to this visit, because it will essentially show how effective the chemo has been at killing the cancer cells in my lymph nodes. I hope to see some images of the scan myself, and if possible, take some home with me. If they let me, I will bring the images home and include it in a future post. I would like to show both this most recent PET scan as well as the original before any chemo.
Today I also had a second PET scan. I will not discuss the results of this scan until Wednesday with my oncologist. I am looking forward to this visit, because it will essentially show how effective the chemo has been at killing the cancer cells in my lymph nodes. I hope to see some images of the scan myself, and if possible, take some home with me. If they let me, I will bring the images home and include it in a future post. I would like to show both this most recent PET scan as well as the original before any chemo.
Thursday, October 25, 2007
Call for blood!
Today, I received some not so good news. Before each chemo treatment, the nurses take a little blood and run a CBC (complete blood count). My white blood cell count is cyclic depending on which chemo drugs were recently administered. Today, my white blood cell count was very low from the Nitrogen Mustard given last Thursday. Friday I was given a Neulasta shot which will boost my white blood cell count, but it takes a while to take effect and it should start working in the next few days. My red blood cell count has been consistently low and getting lower. The normal range is 4.0 – 6.0 million cells per cubic millimeter. For the last few weeks my count has been between 3.0 and 4.0. So, I have been given a red blood cell booster shot each week in attempt to bring that up. Today, my count was 2.88. So it is getting worse. My doctor is having me come in on Monday to see the result of my booster shot today, and based on those CBC results, we may decide that a blood transfusion is necessary. If it is necessary, I will soon find out if my loving sisters offer to give blood or bone marrow has expired!
Next week will be a long and busy week for me. On Monday I have a PET scan. Before that, I will go to my oncologist to give blood for the CBC test. Based on the results, if a transfusion is necessary, I am not sure how soon my oncologist will schedule it. But even if it is not scheduled next week, which it most likely will be, I have two chemo treatments scheduled. One on Wednesday, the second on Thursday, and then a Neulasta shot on Friday. And on Wednesday I will meet my oncologist before my chemotherapy to discuss the results of the PET scan. I will be sure to post a blog entry concerning that meeting, because I am sure everyone is as interested as I am to find out the amount of cancer cells that still remains in my body. I am going to request to see the PET scan images myself, and if possible, I would like to get a copy and possible post that in my blog. We will see…
Next week will be a long and busy week for me. On Monday I have a PET scan. Before that, I will go to my oncologist to give blood for the CBC test. Based on the results, if a transfusion is necessary, I am not sure how soon my oncologist will schedule it. But even if it is not scheduled next week, which it most likely will be, I have two chemo treatments scheduled. One on Wednesday, the second on Thursday, and then a Neulasta shot on Friday. And on Wednesday I will meet my oncologist before my chemotherapy to discuss the results of the PET scan. I will be sure to post a blog entry concerning that meeting, because I am sure everyone is as interested as I am to find out the amount of cancer cells that still remains in my body. I am going to request to see the PET scan images myself, and if possible, I would like to get a copy and possible post that in my blog. We will see…
Monday, October 22, 2007
One third down, two to go...
This last Thursday I had another appointment with my oncologist. We discussed the option of Radiation therapy, but so far a decision has not been made. To clarify, if I do end up getting radiation therapy, I will not start that until a couple of weeks after chemotherapy is completed. Therefore, if it does happen, it won’t start until around Christmas time. This means that my doctor still has a lot of time to seek the advise of other oncologists to ensure that the best decision is made. I feel extremely confident in my doctor and I know that he will only recommend what is best for me.
I started the second third of my chemotherapy regimen on Thursday and I am beginning to feel the cumulative effects of chemo. Fatigue is getting worse, and a few side effects are starting to become noticeable that did not exist in the first third. My fingertips and toes are slightly numb, and bouts of nausea are more common. I still think that my side effects have been minimal and I am very lucky, but I do expect things to start getting worse.
I scheduled a second PET scan that will be on Monday Oct. 29th. This PET scan will hopefully show either a reduced amount of cancerous cells, or a complete lack of cancerous cells. However, no matter the results of the scan, my chemotherapy will remain the same. A negative PET scan could assist my oncologist in the radiation decision, but that is all. I will have another PET scan after chemo is complete to determine if the chemo was successful, and every six months thereafter to determine if there is a relapse. The first two years are the most crucial as that is when there are the most recurrences. But that is getting too far in the future, and right now I need to take it one day at a time
I started the second third of my chemotherapy regimen on Thursday and I am beginning to feel the cumulative effects of chemo. Fatigue is getting worse, and a few side effects are starting to become noticeable that did not exist in the first third. My fingertips and toes are slightly numb, and bouts of nausea are more common. I still think that my side effects have been minimal and I am very lucky, but I do expect things to start getting worse.
I scheduled a second PET scan that will be on Monday Oct. 29th. This PET scan will hopefully show either a reduced amount of cancerous cells, or a complete lack of cancerous cells. However, no matter the results of the scan, my chemotherapy will remain the same. A negative PET scan could assist my oncologist in the radiation decision, but that is all. I will have another PET scan after chemo is complete to determine if the chemo was successful, and every six months thereafter to determine if there is a relapse. The first two years are the most crucial as that is when there are the most recurrences. But that is getting too far in the future, and right now I need to take it one day at a time
Monday, October 15, 2007
Radiation Decision
This week I start the 2nd third of my chemo regimen. This means that I am one third done and have only 8 weeks to go. This last week was not too bad, but I did experience a cough and shortness of breath, which are both side effects of the Bleomycin. I thought I had caught a cold at first, but the cough was un-productive and lasted a little over a day and was definitely not a result of a cold. Once again, fatigue is the most difficult to cope with. It definitely appears that the side effects of chemo are cumulative because the muscle shaking and general fatigue are both getting worse. But I am still able to go to work 5 days a week, for roughly 40 hours per week.
This Thursday I meet with my oncologist before chemo. My doctor, Dr. Kenney, by my opinion is a great oncologist. He has a passion for lymphoma and his mentor is on the board of the leukemia/lymphoma society. He has access to experts both through his mentor and at Stanford, which developed the chemo regimen that I am on called Stanford V. At my upcoming appointment we will likely make a decision on one final treatment option: radiation. Typically radiation is administered in conjunction with chemotherapy for patients on Stanford V. However, radiation is usually only administered to large masses of cancer, which the average patient usually has. My case is slightly unique in that I don’t have large masses. Instead, my cancer has spread to many lymph nodes throughout my abdomen (my PET scan looked like a Christmas Tree instead of flood lights!). I do have a few clumps of lymph nodes that collectively may be considered a large mass. My doctor is getting many second opinions to help him decide what would be the best course of action for me. Radiation increases the cure rate of lymphoma because it attacks the larger areas where cancer is likely to relapse. Unfortunately it also has a risk of causing secondary cancers later in life. The debate with me is that if we decide to radiate, we would have to radiate a large portion of my chest, which would put me at risk of exposing multiple organs to radiation and thus increasing my risk of secondary cancers. It is a difficult decision for my doctor because I am young and he does not want to cause a secondary cancer later in life, but he also wants to increase my probability of being cured.
I will post the result of Thursday’s appointment and the latest on the radiation decision as soon as possible.
This Thursday I meet with my oncologist before chemo. My doctor, Dr. Kenney, by my opinion is a great oncologist. He has a passion for lymphoma and his mentor is on the board of the leukemia/lymphoma society. He has access to experts both through his mentor and at Stanford, which developed the chemo regimen that I am on called Stanford V. At my upcoming appointment we will likely make a decision on one final treatment option: radiation. Typically radiation is administered in conjunction with chemotherapy for patients on Stanford V. However, radiation is usually only administered to large masses of cancer, which the average patient usually has. My case is slightly unique in that I don’t have large masses. Instead, my cancer has spread to many lymph nodes throughout my abdomen (my PET scan looked like a Christmas Tree instead of flood lights!). I do have a few clumps of lymph nodes that collectively may be considered a large mass. My doctor is getting many second opinions to help him decide what would be the best course of action for me. Radiation increases the cure rate of lymphoma because it attacks the larger areas where cancer is likely to relapse. Unfortunately it also has a risk of causing secondary cancers later in life. The debate with me is that if we decide to radiate, we would have to radiate a large portion of my chest, which would put me at risk of exposing multiple organs to radiation and thus increasing my risk of secondary cancers. It is a difficult decision for my doctor because I am young and he does not want to cause a secondary cancer later in life, but he also wants to increase my probability of being cured.
I will post the result of Thursday’s appointment and the latest on the radiation decision as soon as possible.
Sunday, October 14, 2007
Gone!
Gone, baby, gone!
It feels better, it looks better--I'm much happier.
Just a little nippy. Brrr!
Thanks so much for my wonderful winter hats--I'm DEFINITELY getting some use out of them now!
Going... Going...
Here is a progression of the hair loss over the course of a couple days. The pillow in the second picture isn't very clear, but trust me, everywhere I went a trail of tiny hairs followed me: hair all over the shower, hair all over my shoulders, and as you can sort of see, hair all over my pillow. The hair loss wasn't very flattering, and came out in scattered bald patches all over my head (primarily on the sides) so I decided it was time to pull out the razor.......
Wednesday, October 10, 2007
Oct 10 update
I thought visitors to my blog would be interested in my work. This is a picture of the Adam Aircraft A-700. I work as a Materials and Processes Engineer which basically means that I decide what materials are used for each part, and I also help solve processing issues that arise during manufacturing of the aircraft. To determine what materials to use, I coordinate tests that determine the strength and other critical properties of the materials. That is my job in a nutshell.
As an update, I am still doing pretty well, but I had a rough week. I had to rely on anti-nausea pills a few times, which is more frequent than after previous chemo treatments. I also experienced a lot of bone pain as a side effect of the white blood cell booster. My fatigue is still the hardest to cope with, and most noticeable is the uncontrolled shaking that I experience in my muscles. I feel shaking in my legs when going up and down stairs, shaking in my arms and hands when doing tasks that require a lot of coordination or strength, and I even hear it in my voice at times. But all things considered, I am doing very well and my chemo nurses have been impressed.
Tomorrow (Thursday) I will have my fourth chemo treatment.
Sunday, October 7, 2007
My new do
As promised...here is a picture of my new haircut. After losing even more hair in the shower this morning, I realized it was time to go for the gold and get it all cut off.
Saturday, October 6, 2007
That's more than just leaves falling!
Yesterday it became official...my hair has decided to part ways with my head. I guess it is fitting. Fall is here, the leaves are changing colors and falling off the trees. My hair is following suit. So far it is not too noticeable if you could see me. My hair does not stand up as much as it used to because it is now thinner, but I don't have any bald spots...yet.
This weekend I think I will cut my hair really short just to save time. It is ridiculous how long it takes to wipe the hairs off my body after a shower...not to mention how long it takes to clean the shower. I will post a picture after my haircut.
I feel fairly well after my double dose of chemo this week. So far I am very fatigued, but I don't have any nausea. That is all my news, so until next time...
GO ROCKIES!
This weekend I think I will cut my hair really short just to save time. It is ridiculous how long it takes to wipe the hairs off my body after a shower...not to mention how long it takes to clean the shower. I will post a picture after my haircut.
I feel fairly well after my double dose of chemo this week. So far I am very fatigued, but I don't have any nausea. That is all my news, so until next time...
GO ROCKIES!
Wednesday, October 3, 2007
Initial Post
This is my initial post of this blog. I will try to update this as frequently as possible with pictures as well as commentary.
I appreciate the support that everyone has given me so far. It is a great reminder of how wonderful my family truly is. I decided to title the blog Cancer Shmancer (Rebecca's idea) to illustrate that I am stronger than the cancer and in the end I will beat it.
Included in this post are pictures of my first chemo treatment. You can see the room where the chemo is administered. It is nice room with a lot of natural light, confortable reclining chairs, and motivational pictures of cancer survivors.
Update: Today was the first of two back-to-back chemo treatments which makes up my third week. I will go back tomorrow morning for the second half of this third week. I also go in Friday morning for a white blood cell booster shot and a red blood cell booster shot. Today's treatment went well, and I have so far not felt any side effects beyond fatigue. As with every other treatment, the worst of the side effects are expected to hit 24-48 hrs afterward.
To help everyone understand my chemo regimen, I will try to explain it. The total duration of the chemotherapy is 12 weeks. This comprises of 3 sets of 4 week blocks. In each block I receive different drugs depending on the week. Week one and three are similar and weeks two and four are identical. Week one I receive Mustargen (a form of mustard gas!), Adriamycin, and Vinblastine. Weeks two and four I receive Vincristine and Bleomycin. Week three I receive Etopiside, Adriamycin, and Vinblastine on day one, and Etoposide again on day two. I also take Prednisone every other day orally as well as an antiviral and antibiotic. After weeks one and three I receive the white blood cell booster I mentioned earlier, and I receive the red cell booster as needed based on blood test results. At one point I may need a transfusion if these are not sufficient. Each of these drugs cause different side effects. Almost all cause hair loss, so I am almost guaranteed to lose my hair which should start any day. So far nausea has been rare, but fatigue has been constant. Muscle fatigue is noticeable from uncontrolled shaking. I also get occasional bone pain caused by the white blood cell booster. The good news is, so far my crohn's disease seems to be under control and not negatively affected by the chemo.
That is a lot of information, so feel free to ask me if you would like clarification.
Why you need a port
Ports are wonderful things. They may look bad right after they are implanted (as you can see) but they make IV treatments and butterfly needles seem brutal. It is my opinion that every human should have a port implanted when they are born...just in case. Seriously though, I simply rub Lidocaine on the port an hour before treatment, and when they stick the needle in I feel nothing. For my first treatment I had not had the port implanted yet, and my vein hurt for over a week. The Mustard gas is very caustic to veins. But because the port dumps the catheter right into the superior vena cava, the drugs get diluted quicker, and no damage is done to veins. I see no down sides, other than what looks like a skinned over eyeball sticking out of your arm (or chest). Or as Rebecca says, a dog squeaky toy (she thinks it should squeak when you push it! She thought it would be fun to bring in a squeaky toy and just as the nurse inserts the catheter, Squeak!). Although you do need to get a heprin shot to keep the line clean after each use and once a month for maintainence after chemotherapy is completed.
Everyone should get one!
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