Thursday, November 29, 2012
#7 The Plan To Make a Plan
We made a visit to MD Anderson again today for more blood work and to meet with Dr. Fowler. Dr. Fowler explained that my mass biopsy was showing some atypical results for Hodgkins and for B-Cell lymphoma but ultimately diagnosed it as Large B Cell Lymphoma. (as we suspected)
It is nice to finally nail things down. RCHOP therapy will likely start tomorrow, or Saturday, or Monday or another day in the near future. It will be an outpatient therapy that occurs every two weeks. As we were trying to come up with a date, we discussed the side effects of chemotherapy. Among a number of other issues, we discussed cumulative fatigue. Fatigue will kick in and will become more difficult with each consecutive treatment. I wast told to expect to bounce back pretty quick after my first treatment. I don't know how I will play this with Angie. My original plan was to be fatigued for two weeks after the first treatment. I still think I will go for it and see if she catches on. What do I have to lose? After all, this is the level of moral support I am getting these days (see below) :) Actually this is proof of cumulative fatigue for her extremely high level of love and support over the last 60 days.
Anyhow, I would like to get a Thursday or Friday schedule so I can recover over the weekend and get back to business the following week.
********* Other Tidbits
It is nice to finally nail things down. RCHOP therapy will likely start tomorrow, or Saturday, or Monday or another day in the near future. It will be an outpatient therapy that occurs every two weeks. As we were trying to come up with a date, we discussed the side effects of chemotherapy. Among a number of other issues, we discussed cumulative fatigue. Fatigue will kick in and will become more difficult with each consecutive treatment. I wast told to expect to bounce back pretty quick after my first treatment. I don't know how I will play this with Angie. My original plan was to be fatigued for two weeks after the first treatment. I still think I will go for it and see if she catches on. What do I have to lose? After all, this is the level of moral support I am getting these days (see below) :) Actually this is proof of cumulative fatigue for her extremely high level of love and support over the last 60 days.
.JPG) |
| At the ready in Dr. Fowler's Procedure room. 11/29 |
********* Other Tidbits
- Bone marrow biopsy is clear
- The biggest thing going on the internet the last few days is here: http://www.facebook.com/ellie.merrell.37?ref=ts&fref=ts
- I have learned quite a bit about Ellie from her Facebook account in the few days that it has been up. She apparently resides in Dallas Texas and has turned vegan.
#6 Enter MD Anderson
I am extremely thankful for the five different doctors that helped me get things figured out. Besides the weight loss (which has stopped) and the night sweats (which have dropped in frequency) I really don't have anything else that would indicate something is wrong. I wonder how long I would have gone not knowing that there was something moving in on my turf. I appreciate their help and feel almost a guilt leaving their care but we have opted to move to another health care provider.
When you have the worlds largest lymphoma center within a 30 minute drive, the logical choice is to make the move. We met with Dr. Fowler on Tuesday the 27th. Dr. Fowler is 1 of 10 Lymphoma doctors at MD. We spoke with him for 30-45 minutes and every question was met with an answer and a drawing of how things work and what our options were. All new cases are presented to the 10 doctors and pathologists for agreement on a treatment plan. It was encouraging to know that 10 of the best lymphoma doctors would be reviewing my case on Wednesday.
We were presented with a couple of different chemo scenarios pending the opinion of the MD pathologist. The mass biopsy results that were processed several weeks early were mixed results and MD wanted to make sure we cleared everything up prior to settling on a treatment plan.
The two plans that we are looking at both last 6 months and are followed by a radiation cycle to blast whatever scar tissue is left over from the swollen lymph / mass / tumor.
Plan 1 - Chemo treatment every 15 days, outpatient procedure
Plan 2 - Chemo treatment once a month but requires hospitalization for several days.
The next step is to give some additional blood tomorrow and follow up with Dr. Fowler on what the lymphoma group decided we should do.
When you have the worlds largest lymphoma center within a 30 minute drive, the logical choice is to make the move. We met with Dr. Fowler on Tuesday the 27th. Dr. Fowler is 1 of 10 Lymphoma doctors at MD. We spoke with him for 30-45 minutes and every question was met with an answer and a drawing of how things work and what our options were. All new cases are presented to the 10 doctors and pathologists for agreement on a treatment plan. It was encouraging to know that 10 of the best lymphoma doctors would be reviewing my case on Wednesday.
We were presented with a couple of different chemo scenarios pending the opinion of the MD pathologist. The mass biopsy results that were processed several weeks early were mixed results and MD wanted to make sure we cleared everything up prior to settling on a treatment plan.
The two plans that we are looking at both last 6 months and are followed by a radiation cycle to blast whatever scar tissue is left over from the swollen lymph / mass / tumor.
Plan 1 - Chemo treatment every 15 days, outpatient procedure
Plan 2 - Chemo treatment once a month but requires hospitalization for several days.
The next step is to give some additional blood tomorrow and follow up with Dr. Fowler on what the lymphoma group decided we should do.
Wednesday, November 28, 2012
#5 Double Whammie Wednesday
In an effort to take steps towards establishing a treatment plan, we opted to schedule a bone marrow biopsy and a Power Port placement surgery on the same day (11/21). I can't deny that it was hard to sleep the previous night.
The bone marrow biopsy was a second effort to confirm the negative results from the Pet scan the week prior. I had heard quite a few stories about bone marrow biopsies, none of which was encouraging. Again, it seemed to go very smoothly.
Flash forward 2 hours and I was getting prepped for the port placement surgery. Chemo Ports are used to make the administration of chemo-therapy drugs, and blood draws a little easier. Chemo drugs have a tendency to wipe out your veins over time and this is apparently a better option. The port itself is a small triangular cup with a membrane and a catheter that runs into one of two veins that bring blood back to the heart. It is installed under the skin a few inches below your collar bone and sewn into the muscle to hold it's place. Hey it is made of titanium and is power injectable! How bad can it be?
http://www.bardaccess.com/port-powerport.php
***Angie thinks she is funny****
Prior to the port procedure, Angie explained to me how they disrobe the patient, put them in stirrups to help with breathing and then install a giant catheter to help drain all the fluids they will have to push. This wasn't the comforting information I needed prior to surgery. It was apparently great medical humor, of which I didn't pick up on. Angie was quite amused with herself as she explained she was "just playing" with me. Pretty low Ang, picking on the sick guy. :)
I remember being wheeled into surgery, having my arms tucked into my sides and that was it. I woke up feeling like I had just had the best nap of all time and I was ready to go home. We waited for a few minutes and headed home to get ready for Thanksgiving.
The bone marrow biopsy was a second effort to confirm the negative results from the Pet scan the week prior. I had heard quite a few stories about bone marrow biopsies, none of which was encouraging. Again, it seemed to go very smoothly.
- Physicians love naked people - Undress
- Put this gown on
- Lay on this table
- Find love handle , check, move back a few inches and start local anesthetic.
- Drill Bone
- Pull marrow out like a wine cork.
Flash forward 2 hours and I was getting prepped for the port placement surgery. Chemo Ports are used to make the administration of chemo-therapy drugs, and blood draws a little easier. Chemo drugs have a tendency to wipe out your veins over time and this is apparently a better option. The port itself is a small triangular cup with a membrane and a catheter that runs into one of two veins that bring blood back to the heart. It is installed under the skin a few inches below your collar bone and sewn into the muscle to hold it's place. Hey it is made of titanium and is power injectable! How bad can it be?
http://www.bardaccess.com/port-powerport.php
***Angie thinks she is funny****
Prior to the port procedure, Angie explained to me how they disrobe the patient, put them in stirrups to help with breathing and then install a giant catheter to help drain all the fluids they will have to push. This wasn't the comforting information I needed prior to surgery. It was apparently great medical humor, of which I didn't pick up on. Angie was quite amused with herself as she explained she was "just playing" with me. Pretty low Ang, picking on the sick guy. :)
I remember being wheeled into surgery, having my arms tucked into my sides and that was it. I woke up feeling like I had just had the best nap of all time and I was ready to go home. We waited for a few minutes and headed home to get ready for Thanksgiving.
#4 Radioactive!
Angie and I met at the One Step Diagnostics Lab in Sugarland to take care of the PT scan. I was asked to fast again. Angie thought ahead and brought Marie Bench's killer cake (the whole thing) for me to eat afterwords. Once we got checked in, things seemed to move like clockwork.
I have found that it is in those moments that your head clears up and you get to analyze. Up until those moments, you are busy trying to get scheduled, take the next step, make logistics arrangements with kids /work etc. When you finally get hooked up, or when you are spending time in the CT machine holding completely still, you get a great opportunity to count blessings.
The song "Radioactive" by Imagine Dragons has been a #1 or #2 most played song at our house for the last several weeks. It has a new meaning when I hear it now.
Angie and I asked the tech for copies of the CDs so we could take a look at the images. The tech hooked us up with the software and we ran home to take a peek. My initial reaction was completely shocked when I could plainly see two large tumors in my pelvic area, and additional hot spots running up my spine and into my lungs. In my eagerness to do a quick survey, I moved the small slider controlling the depth and height of the 3d image too quickly. I had mistakenly identified my kidneys and my ureters as my lungs and spinal cord. Shock and ,,,,,,,, AHHHHH,,,
Everything else showed as clear, and confirmed by a physician. I don't recommend attempting to read pt scan images.
As it turns out, Pet Scans don't do a great job of finding cancer in bone marrow so I was scheduled for a bone marrow biopsy to confirm.
- Come on back,
- Roll up you sleeves.
- Start IV
- Push Radioactive Tracer through lines and wait 45 minutes.
- Hop in the PET scan machine and hold still for 30 minutes.
I have found that it is in those moments that your head clears up and you get to analyze. Up until those moments, you are busy trying to get scheduled, take the next step, make logistics arrangements with kids /work etc. When you finally get hooked up, or when you are spending time in the CT machine holding completely still, you get a great opportunity to count blessings.
The song "Radioactive" by Imagine Dragons has been a #1 or #2 most played song at our house for the last several weeks. It has a new meaning when I hear it now.
Angie and I asked the tech for copies of the CDs so we could take a look at the images. The tech hooked us up with the software and we ran home to take a peek. My initial reaction was completely shocked when I could plainly see two large tumors in my pelvic area, and additional hot spots running up my spine and into my lungs. In my eagerness to do a quick survey, I moved the small slider controlling the depth and height of the 3d image too quickly. I had mistakenly identified my kidneys and my ureters as my lungs and spinal cord. Shock and ,,,,,,,, AHHHHH,,,
Everything else showed as clear, and confirmed by a physician. I don't recommend attempting to read pt scan images.
As it turns out, Pet Scans don't do a great job of finding cancer in bone marrow so I was scheduled for a bone marrow biopsy to confirm.
#3 Tumor Kabob
I reported to the Katy Memorial Hospital to undergo a pelvic mass biopsy. Seemed like clockwork.
A week or so later we were given some preliminary results - Diffuse Large B Cell Lymphoma.
Some of the pathology staining was contradictory and has caused problems for proper identification up to today 11-29.
Next Stop - Pet Scan
- Drop your drawers
- Wear this napkin as a gown
- Hop in bed
- Start IV
- Get pushed to CT machine.
 |
| Pre-Party, Party |
 |
| Post Party Party, Bam |
A week or so later we were given some preliminary results - Diffuse Large B Cell Lymphoma.
Some of the pathology staining was contradictory and has caused problems for proper identification up to today 11-29.
Next Stop - Pet Scan
#2 The 1/4 Gallon Challenge
I was sent to a small diagnostic imaging lab to have my CT scan worked up. When I arrived, I checked in and was promptly given two large jugs of "Vanilla Smoothie" and a straw. You can call it whatever you want but Barium Sulfate isn't what champions are chasing their Wheaties with. I could smell it wasn't quite right and decided there was no way I could win the challenge with a straw. I hit it as fast and as hard as I could while trying to ignore my body's 6th sense. I can't say that they tasted badly but when Barium hits the back of your throat, your body seems to hesitate to move it further along the path. I don't know what to compare it with but it might be like trying to down a jug of eggnog that has just started to go bad. Heavy, I can still feel and taste it when I think about it.
The rest of the scan seemed to move along like clockwork.
The following week at the oncologists office I was told that they had detected a mass in my pelvis just left of my bladder, which measured 10X8 CM and that there were multiple lymph nodes involved.
We scheduled a Mass Biopsy to figure out what it was and a PT Scan to see if there was more.
**** Reality Check***** Felt pretty heavy.
The rest of the scan seemed to move along like clockwork.
- Undress
- Dress with a paper gown long enough to keep your belly button modest
- Lay down
- start IV
- Start up the CT scanner
- Start the Iodine IV (pretty funny feeling exhaling after they started the iodine)
- Hold Still
The following week at the oncologists office I was told that they had detected a mass in my pelvis just left of my bladder, which measured 10X8 CM and that there were multiple lymph nodes involved.
We scheduled a Mass Biopsy to figure out what it was and a PT Scan to see if there was more.
**** Reality Check***** Felt pretty heavy.
#1 Knowing My Numbers
Every year my employer offers a program that provides an incentive for employees to get some blood work done, and thereby, raising awareness of the employees personal health. In a nutshell, it gives the company an opportunity to tell you that you need to eat more vegetables. If you can bear the sales pitch of more broccoli and less steak / burger, the company will contribute an additional $600 dollars to your health savings account.
I can't say that knowing my numbers was a very high priority. I had missed the "in house" service that was offered at work and I needed to visit a physician's clinic in order to get the blood work done. I was willing to let it slide, but Angie somehow caught wind of the offer and made an appointment for me. I am glad that she did. As it turns out, had I gone to the in house service, I would have only found out that my cholesterol and blood pressure looks good. That would not have been the whole picture.
My routine check up and blood draw turned out to be a little odd. Angie and I were called back to discuss the results with the doctor. There were several things that raised red flags.
The results seemed to indicate a massive inflammatory response which they suspected was due to an autoimmune disease such as rheumatoid arthritis or Lupus. The blood test results indicated that I should be in serious joint pain. I felt fine, I had no swelling, no pain, no joint pain to speak of. I was consequently sent to a rheumatologist who gave me a clean bill of health in exchange for a modest donation of my off spec. blood. The rheumatologist happened to share a medical practice with an oncologist. She thought that there was something strange going on and shared my case with him. The oncologist spent a few minutes reviewing my case and called my cell phone as I was driving home and asked me to turn around and come back to the office.
****And then our little world changed******
The oncologist spent more time on my medical history than the previous physicians, and asked me some pretty straight forward questions. I had injured my back in October of 2011. It was bad enough to put me down for close to a week. I had never been in so much pain in my life. I wouldn't eat or drink in fear of having to stand up to use the bathroom. When I did eat, it was "Angie" portions. After I was able to get up and move, I resolved that I would loose weight. I cut my diet to 2000 calories a day and started getting some regularmisery exercise. It was slow but steady loss but it was working and I was committed. In February my weight loss seemed to starting coming a little easier. My assumption was that I had finally convinced my metabolism to do me a favor and kick it up a notch. I also noticed that I started having some severe night sweats. (we are talking, tough to take your shirt off soaked) I again, marked it up to a seriously awesome metabolism. I WAS PROUD! I continued to drop weight and ended up dropping ~ 60 pounds in 12 months. My doctor was suspicious. He asked if I was obsessive about losing weight - No. Exercising every day? - No. Did it seem to come easy? - Yes. He basically told me that I may have had some help and suggested getting a CT Scan.
I can't say that knowing my numbers was a very high priority. I had missed the "in house" service that was offered at work and I needed to visit a physician's clinic in order to get the blood work done. I was willing to let it slide, but Angie somehow caught wind of the offer and made an appointment for me. I am glad that she did. As it turns out, had I gone to the in house service, I would have only found out that my cholesterol and blood pressure looks good. That would not have been the whole picture.
My routine check up and blood draw turned out to be a little odd. Angie and I were called back to discuss the results with the doctor. There were several things that raised red flags.
- High Globulin Levels
- Low RBC
- Low Hemaglobin
- Low Hematocrit
- Extremely Low Vitamin D
- Low Lymph numbers
- Low Lymphocytes
- High Segmented Neutrophils
- Low Albumin
- Low Creatinine
- Low Iron
- Ferritin 3X higher than what it should have been
- Sed Rate of 78
- Positive for Antinuclear Antibody
- Negative ANA Titer
The results seemed to indicate a massive inflammatory response which they suspected was due to an autoimmune disease such as rheumatoid arthritis or Lupus. The blood test results indicated that I should be in serious joint pain. I felt fine, I had no swelling, no pain, no joint pain to speak of. I was consequently sent to a rheumatologist who gave me a clean bill of health in exchange for a modest donation of my off spec. blood. The rheumatologist happened to share a medical practice with an oncologist. She thought that there was something strange going on and shared my case with him. The oncologist spent a few minutes reviewing my case and called my cell phone as I was driving home and asked me to turn around and come back to the office.
****And then our little world changed******
The oncologist spent more time on my medical history than the previous physicians, and asked me some pretty straight forward questions. I had injured my back in October of 2011. It was bad enough to put me down for close to a week. I had never been in so much pain in my life. I wouldn't eat or drink in fear of having to stand up to use the bathroom. When I did eat, it was "Angie" portions. After I was able to get up and move, I resolved that I would loose weight. I cut my diet to 2000 calories a day and started getting some regular
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