Many of you have heard the phrase "the new normal". It has been overused many times in the media over the past few years and I heard it a lot lately related to my condition. The theory is that I will find a rhythm or pace to my life during this treatment. As today is only "day 2" (common nomenclature for the first day after chemo), I will not pretend that I am anywhere close to the new normal. Stuart will be glad to hear it after witnessing my day.
So how did I feel? Generally pretty good. A few common side effects not worth mentioning, although I will give special recognition to my burning feet...who knew? Good thing I bought the lotion.
I did work for a couple hours and took a walk around the neighborhood for about an hour. Other than those three, the rest of the hours in my day were spent on the Internet trying to get my head around what I read in my pathology report yesterday. I will no doubt get past it and move on.
One of my college roommates, Steve Sparks, posted a comment to yesterday's entry. He was diagnosed with Hodgkin's at age 28, so I look forward to his wisdom and experience as I go through this.
Tomorrow, my Hokies have a slim chance of beating Wake Forest and moving the team to 5-2 on the year...I will be tuned into ESPNU tomorrow for the 3:30 kickoff.
Showing posts with label Dr. Hellner. Show all posts
Showing posts with label Dr. Hellner. Show all posts
Friday, October 15, 2010
Monday, October 11, 2010
11th - Good News At Last
I spent a couple hours this morning with Debbie, one of the nurses at Dr. Frenette's office. The point of the meeting was to walk through the detail of the upcoming ABVD chemotherapy treatment. It was called a "learn" session and was very similar to the one Stuart and I attended last week at Dr. Hellner's office.
Dr. Frenette sounds like he is a big believer in "throwing the kitchen sink" at the side-effects that may result from the treatment. Debbie walked me through a very expansive regime of drugs to deal with nausea, fever, chills, allergies, constipation, diarrhea, indigestion, sleep problems, etc. It seems there are many side effects to ABVD Chemotherapy that can be controlled through drugs up front. Others, like blood count changes and sore throat are treated symptomatically. Others still, like hair-loss, sadly, cannot be controlled.
Everything is now set for the port placement tomorrow morning and the start of treatment on Thursday.
Over lunch, we got wonderful news from Dr. Hellner's office. The results of the bone marrow biopsy came back negative; everything is fine with my bone marrow! This finalizes the diagnosis as Stage IIIa. Stuart and I both cried, as this was the first piece of good news in a very long string of bad news.
Dr. Frenette sounds like he is a big believer in "throwing the kitchen sink" at the side-effects that may result from the treatment. Debbie walked me through a very expansive regime of drugs to deal with nausea, fever, chills, allergies, constipation, diarrhea, indigestion, sleep problems, etc. It seems there are many side effects to ABVD Chemotherapy that can be controlled through drugs up front. Others, like blood count changes and sore throat are treated symptomatically. Others still, like hair-loss, sadly, cannot be controlled.
Everything is now set for the port placement tomorrow morning and the start of treatment on Thursday.
Over lunch, we got wonderful news from Dr. Hellner's office. The results of the bone marrow biopsy came back negative; everything is fine with my bone marrow! This finalizes the diagnosis as Stage IIIa. Stuart and I both cried, as this was the first piece of good news in a very long string of bad news.
Thursday, October 7, 2010
7th - Learning About Chemo
With almost all of my test results back, with the exception of the bone marrow biopsy, it is time to start seriously planning for chemotherapy. As I have mentioned previously, the standard of care in the US for Hodgkin's Lymphoma is ABVD chemotherapy. For me, it will be a 6-8 month regime, with treatments given every two weeks.
In order to learn more about ABVD and the potential side effects, Stuart and I spent the better part of the morning with Lindsay D. Griffin, Oncology RN extraordinaire. Lindsay was great and gave us a lot of detail, which I'll summarize for those of you who are interested.
ABVD is an acronym using the first letter of each of the four chemotherapy drugs used.
A = Adriamycin/Doxorubicin (a.k.a. "The Red Devil")
The red drug, Adriamycin, is usually given first. It is administered via a slow IV push over 10 minutes or so. Common side effects include:
B = Bleomycin/Blenoxane (a.k.a. Bleo)
Bleo is a clear fluid given via IV push, or mixed in 100ml normal saline solution and infused over 10 minutes or so. Common side effects include:
V = Vinblastine/Velban/VLB
Vinblastine is another clear fluid given via IV injection/infusion. Common side effects include:
D = Dacarbazine/DTIC
Dacarbazine is a clear liquid or may have a faint yellow tint. It is typically mixed in 250ml or more of D5W and infused over 30 minutes or longer (more of a drip). Common side effects include:
That is ABVD...3-5 hours and you are done and on your way.
In order to learn more about ABVD and the potential side effects, Stuart and I spent the better part of the morning with Lindsay D. Griffin, Oncology RN extraordinaire. Lindsay was great and gave us a lot of detail, which I'll summarize for those of you who are interested.
ABVD is an acronym using the first letter of each of the four chemotherapy drugs used.
A = Adriamycin/Doxorubicin (a.k.a. "The Red Devil")
The red drug, Adriamycin, is usually given first. It is administered via a slow IV push over 10 minutes or so. Common side effects include:
- Reduced blood counts, possibly leading to fever, chills, etc.
- Hair loss
- Nausea and vomiting
- Discolored (red) urine - no shock here
B = Bleomycin/Blenoxane (a.k.a. Bleo)
Bleo is a clear fluid given via IV push, or mixed in 100ml normal saline solution and infused over 10 minutes or so. Common side effects include:
- Fever and chills, which may occur after treatment
- Skin and nail changes, typically involving brown, yellow or pink discoloration and brittle texture.
V = Vinblastine/Velban/VLB
Vinblastine is another clear fluid given via IV injection/infusion. Common side effects include:
- Nerve changes or muscle cramping, which may occur within two weeks of the first treatment or after several doses have been given. Numbness, tingling or burning in the fingers and toes is common.
- Constipation
D = Dacarbazine/DTIC
Dacarbazine is a clear liquid or may have a faint yellow tint. It is typically mixed in 250ml or more of D5W and infused over 30 minutes or longer (more of a drip). Common side effects include:
- Flu-like syndrome
- Reduced blood counts
- Nausea and vomiting
That is ABVD...3-5 hours and you are done and on your way.
Wednesday, October 6, 2010
6th - The Jury Is Back
Special thanks again to my Mom, Carol Deets, who delayed her flight from Sunday until today to help with our two children and the house. I love you Mom!
Today was a very long day. I had several tests done, met a new oncologist for a second opinion and received my final pathology results from the mediastinoscopy.
Both of the tests I had done were done to establish baselines of organ function prior to chemotherapy. That is ominous, is it not? The first test was called a pulmonary function test and involved me sitting in a small, enclosed glass booth huffing and puffing on air and gas until I nearly passed out. Results normal. The second test was an Echo cardiogram, which is essentially a sonogram that checks heart function. Results normal.
On a seemingly unrelated note, we have used one of Charlotte's best interior designers, Wanda Horton, a few times. Upon hearing what I was going through, Wanda mentioned that one of her clients was Charlotte's best oncologist, and we simply needed to see him. After we confirmed her thought, we met today with one of Charlotte's Best Doctor's 2010, Gary P. Frenette, MD PhD. Dr. Frenette was fantastic, and although I'm going to feel guilty about leaving Dr. Hellner, I am going to leave my care to Dr. Frenette from here on out. Thank you Wanda!
The last news of the day was really a foregone conclusion. Dr. Reames called the house and gave me the final pathology results: Hodgkin's Lymphoma, Nodular Sclerosis subtype.
Today was a very long day. I had several tests done, met a new oncologist for a second opinion and received my final pathology results from the mediastinoscopy.
Both of the tests I had done were done to establish baselines of organ function prior to chemotherapy. That is ominous, is it not? The first test was called a pulmonary function test and involved me sitting in a small, enclosed glass booth huffing and puffing on air and gas until I nearly passed out. Results normal. The second test was an Echo cardiogram, which is essentially a sonogram that checks heart function. Results normal.
On a seemingly unrelated note, we have used one of Charlotte's best interior designers, Wanda Horton, a few times. Upon hearing what I was going through, Wanda mentioned that one of her clients was Charlotte's best oncologist, and we simply needed to see him. After we confirmed her thought, we met today with one of Charlotte's Best Doctor's 2010, Gary P. Frenette, MD PhD. Dr. Frenette was fantastic, and although I'm going to feel guilty about leaving Dr. Hellner, I am going to leave my care to Dr. Frenette from here on out. Thank you Wanda!
The last news of the day was really a foregone conclusion. Dr. Reames called the house and gave me the final pathology results: Hodgkin's Lymphoma, Nodular Sclerosis subtype.
Tuesday, October 5, 2010
5th - Bone Marrow Biopsy
Stuart and I went to Dr. Hellner's office this morning for a follow-up appointment after my mediastinoscopy last week and my PET scan yesterday.
Dr. Hellner reviewed the fact that the initial results of the biopsy were suggestive of Hodgkin's Lymphoma, Nodular Sclerosis subtype. The news today was that the PET scan showed lyphadenopathy below my diaphragm, specifically in my abdomen. My spleen was also involved, although I'd been told on multiple occasions that the spleen is a "glorified lymph node" and is often affected. The fact that I have disease above and below my diaphragm means that I am now considered to have an advanced stage (Stage III or Stage IV) of Lymphoma. Stage IV means that the disease has spread to organs outside the lymph system, such as liver, lung, or bone marrow. It is for that reason that I had the privilege of a bone marrow biopsy today. Dr. Hellner was leaving for a vacation to Napa that evening, so her day was incredibly busy. She asked us to come back in the afternoon to have the procedure.
Back at the office at around 3:30 to have the bone marrow biopsy done. I know that many of you have heard nightmare stories about how painful this procedure is, but my procedure was not that bad thanks to the wonderful Dr. Hellner and her capable nurse, Carol. The procedure lasted about 15 minutes, 30 if you count the 15 minutes I spent stalling waiting for the Valium I took to kick in. I assumed the fetal position on the exam table, hind quarters hanging in the breeze as Dr. Hellner pushed a thick needle into my lower back/hip. The sensation was mostly one of pressure, with the exception of the time when the fluid marrow was extracted, which was more akin to feeling someone sucking the contents of your legs through a straw in rapid fashion.
We headed home knowing that results of this terrible test would not be back until next week.
Dr. Hellner reviewed the fact that the initial results of the biopsy were suggestive of Hodgkin's Lymphoma, Nodular Sclerosis subtype. The news today was that the PET scan showed lyphadenopathy below my diaphragm, specifically in my abdomen. My spleen was also involved, although I'd been told on multiple occasions that the spleen is a "glorified lymph node" and is often affected. The fact that I have disease above and below my diaphragm means that I am now considered to have an advanced stage (Stage III or Stage IV) of Lymphoma. Stage IV means that the disease has spread to organs outside the lymph system, such as liver, lung, or bone marrow. It is for that reason that I had the privilege of a bone marrow biopsy today. Dr. Hellner was leaving for a vacation to Napa that evening, so her day was incredibly busy. She asked us to come back in the afternoon to have the procedure.
Back at the office at around 3:30 to have the bone marrow biopsy done. I know that many of you have heard nightmare stories about how painful this procedure is, but my procedure was not that bad thanks to the wonderful Dr. Hellner and her capable nurse, Carol. The procedure lasted about 15 minutes, 30 if you count the 15 minutes I spent stalling waiting for the Valium I took to kick in. I assumed the fetal position on the exam table, hind quarters hanging in the breeze as Dr. Hellner pushed a thick needle into my lower back/hip. The sensation was mostly one of pressure, with the exception of the time when the fluid marrow was extracted, which was more akin to feeling someone sucking the contents of your legs through a straw in rapid fashion.
We headed home knowing that results of this terrible test would not be back until next week.
Thursday, September 30, 2010
30th - Losing my resolve
Stuart and I met with Dr. Hellner for about an hour this morning and discussed my history, her initial thoughts (lymphoma) and possible next steps. She explained to us that there are two main types of lymphoma, Hodgkin's Lymphoma (HL) and Non-Hodgkin's Lymphoma (NHL). She mentioned that at my age (36), I was certainly in the age group for Hodgkin's Lymphoma, although Non-Hodgkin's Lymphoma was certainly a possibility as well.
For all the nerds in the group, Hodgkin's has a bi-modal distribution, meaning that it is most common (modal) at two (bi-) points in life. It is most likely to be diagnosed in people in their twenties or thirties. It is less common in middle age and becomes more common again after age 60. Non-Hodgkin's occur more often as your age increases. The cause of Lymphoma is unknown, the prognosis varies based on type and stage, but inevitably the treatment is some type of chemotherapy.
Here are the websites that I have visited and would like to share.
Lymphoma Research Foundation http://www.lympoma.org/
The Leukemia & Lymphoma Society http://www.leukemia-lymphoma.org/
National Cancer Institute http://www.cancer.gov/
American Cancer Society http://www.cancer.org/
Both Stuart and I left Dr. Hellner's office glad that we went. We both had a sense of realism that having cancer would not be ideal, but that Lymphoma is curable.
Next steps are to go forward with the mediastinoscopy tomorrow morning to try to get more biopsy tissue, as well as to schedule appointments next week for heart and lung tests (baselines prior to chemotherapy).
On a lighter note, my Mom came down this evening and will be staying with us through Sunday to help with the kids and the house.
For all the nerds in the group, Hodgkin's has a bi-modal distribution, meaning that it is most common (modal) at two (bi-) points in life. It is most likely to be diagnosed in people in their twenties or thirties. It is less common in middle age and becomes more common again after age 60. Non-Hodgkin's occur more often as your age increases. The cause of Lymphoma is unknown, the prognosis varies based on type and stage, but inevitably the treatment is some type of chemotherapy.
Here are the websites that I have visited and would like to share.
Lymphoma Research Foundation http://www.lympoma.org/
The Leukemia & Lymphoma Society http://www.leukemia-lymphoma.org/
National Cancer Institute http://www.cancer.gov/
American Cancer Society http://www.cancer.org/
Both Stuart and I left Dr. Hellner's office glad that we went. We both had a sense of realism that having cancer would not be ideal, but that Lymphoma is curable.
Next steps are to go forward with the mediastinoscopy tomorrow morning to try to get more biopsy tissue, as well as to schedule appointments next week for heart and lung tests (baselines prior to chemotherapy).
On a lighter note, my Mom came down this evening and will be staying with us through Sunday to help with the kids and the house.
Wednesday, September 29, 2010
29th - Good news is bad news
Dr. Reames called this afternoon to tell me that the pathology department called and the tissue from Monday's bronchoscopy was "non-diagnostic". Technically, it means that there were no malignant cells found, which I took as good news. Those in the medical profession took it as a disappointment however, as they do not seem to want to call it quits without an adequate explanation for the golf ball sized lymph nodes in my chest. Go figure.
At this point, I think everyone but me believes that I have Lymphoma. My resolve has started to give way, so I decided it was time to see that Oncologist for a consultation.
Dr. Kersten recommended Mariealane B. Hellner, MD, who practices near my house and is supposed to be very good. Stuart and I will go to her office in the morning.
At this point, I think everyone but me believes that I have Lymphoma. My resolve has started to give way, so I decided it was time to see that Oncologist for a consultation.
Dr. Kersten recommended Mariealane B. Hellner, MD, who practices near my house and is supposed to be very good. Stuart and I will go to her office in the morning.
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