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.
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