Thursday, August 15, 2013
Saturday, June 29, 2013
June 2013- Ascites
So I left the hospital after 6 days (May 18th), still in excruciating pain, but with no definitive cause and not enough pain relief. The first 2 weeks were rough as I struggled to find an answer, while my symptoms changed. Unable/unwilling to see another doc or take another test (yet) I continued to monitor my symptoms and research, research, research. Meanwhile, I developed Bronchitis (threat of pneumonia)
I watched my symptoms slowly return to when I first was diagnosed... everything I ate or drank started trying to come back up. I was gaining weight and eating less. Eventually, I had an almost perfect basketball where my FLAT tummy used to be. Looked and felt 6 months pregnant. Very painful, don't recommend it. Ascites!
Saw my oncologist June 24th, he diagnosed the fluid upon physical examination. So 2 days later I had 2 liters drained from the abdomen. I have a CT scheduled for Monday and a follow up the following week. I need results:
-the cytology from my fluid
-the CT results
-review with oncologist
Once I can review (digest) things I will need a new plan. I have had a plan at every stage, but this stage is the one I have dreaded the most. To me 'it' represents "the end".
I was told of relief upon draining, but I haven't really seen it. Lots of pain, uncomfortable and still looking quite large (4 months pregnant). I have been vomiting a lot and keep losing my medication (not good).
Chemo was mentioned as a possible 'treatment' funny how they use that word. To help shrink it more, to alleviate some of the symptoms. They took my port last August, because there are no further treatments for me... palliative ONLY. I don't feel that chemo is a PALLATIVE option for me. It was a race before to see which would kill me first, the cancer or the chemo. Not really looking for odds these days. The cost is too great for the 'benefits' they offer.
I'll be back within a couple weeks to post where we go from here.
Thank you for following, I hope for better news (or attitude) next time !
I watched my symptoms slowly return to when I first was diagnosed... everything I ate or drank started trying to come back up. I was gaining weight and eating less. Eventually, I had an almost perfect basketball where my FLAT tummy used to be. Looked and felt 6 months pregnant. Very painful, don't recommend it. Ascites!
Saw my oncologist June 24th, he diagnosed the fluid upon physical examination. So 2 days later I had 2 liters drained from the abdomen. I have a CT scheduled for Monday and a follow up the following week. I need results:
-the cytology from my fluid
-the CT results
-review with oncologist
Once I can review (digest) things I will need a new plan. I have had a plan at every stage, but this stage is the one I have dreaded the most. To me 'it' represents "the end".
I was told of relief upon draining, but I haven't really seen it. Lots of pain, uncomfortable and still looking quite large (4 months pregnant). I have been vomiting a lot and keep losing my medication (not good).
Chemo was mentioned as a possible 'treatment' funny how they use that word. To help shrink it more, to alleviate some of the symptoms. They took my port last August, because there are no further treatments for me... palliative ONLY. I don't feel that chemo is a PALLATIVE option for me. It was a race before to see which would kill me first, the cancer or the chemo. Not really looking for odds these days. The cost is too great for the 'benefits' they offer.
I'll be back within a couple weeks to post where we go from here.
Thank you for following, I hope for better news (or attitude) next time !
Behind on posting... May 2013
I wished I had posted sooner (more frequently) but times are getting tough. So I could feel it coming in late April, but didn't really notice it until after I landed in the hospital (sick again). Symptom- Severe Stabbing pain on back near left kidney. After 6 days of hell (May 12-18) and any logical test you can think to run, I left the hospital. The only logical conclusion was that the cancer was back. They did drain 3oz of fluid from a cul-de-sac behind my uterus. No bacteria, but there were cancer cells present. Oncologist, said not to ring the village alarm yet... logical to have cancer cells present, the count of them is what matters. He said the fluid and the cancer cell count were both low. And wanted to see me in a month. Since then nothing has been the same. It is now late June and I need a few more posts in...
If you are following, I give you my thanks and appreciate your patience.
If you are following, I give you my thanks and appreciate your patience.
Monday, April 1, 2013
Year One Without a Stomach-Terminal Gastric Cancer
I have been off for a while. I got an infection at the end of January and the antibiotics wiped out my digestive system. Lost more weight (and hope). I have just returned from a 'once in a lifetime' vacation in Hawaii. I have learned a lot and want to share some things.
Today I am 111 lbs!!! Not only did the loss stop, but I gained. I can finally eat normal food (including fresh fruits and vegetables). The eating key now is: WHEN (how often), PORTION SIZE and CHEWING (especially large blocks of proteins).
My blood work is phenomenal (normal) and my scan showed no advancement! Don't misunderstand, I am terminal, and it is building strength. Meanwhile, I am WELL and am getting stronger everyday!
I am Extremely Grateful for Medical Marijuana. Without it, my digestive track would remain at a semi-constant state of nausea. Those times without nausea, there still is NO appetite. Only pot has resolved this issue (and Riesling wine). I start to eat about 2 hours after completion of last meal. Keep portions smaller. I start my day with hot tea, switch to iced tea (sometimes) and Riesling starts just afternoon. Absolutely cannot drink any Water, Carbonated bevs, any Acidic or Beer. Mixed drinks, with juice (Mai Tai's) are awesome. The secret to my eating success (pot and Riesling). Unfortunately, I don't believe this would be a normal course for most people. It seems totally frikin ridiculous to me, yet this is what has been tried and tested (successful for me). Again, I am NOT advising this regiment.
My oncol is completely aware. He has been so amazed by my last 2 scans & blood work, he asked what I was doing. I said "partying like a rock star". We talked, told him everything. We had just gotten back from Carlos Santana in Vegas. Saw Ron White... plans for Hawaii. He told me to keep up with whatever I was doing, it was 'obviously working for me'. You know, I think the stress factor is a big key. TOLD the Doc: Pot takes the edge off, changes your outlook, gives you ideas and even laughs. The wine, well it helps my digestive track. I have drank VERY heavily my entire life. My liver and kidneys (and all other organs) are completely normal. Funny, I always thought it would be my liver. Either way, he agreed, it has nothing to do with my Stomach Cancer. Never will know how I got that lucky draw. He gave me my monthly B12 and sent me on my way, both of us smiling. I mean what is he gonna say to me? My numbers are damn near perfect and I gained weight.
The weight, I believe is muscle. Was on the go for about 20 days straight. My stamina has increased along with my strength. Snorkeled reefs, swam with dolphins, climbed up/down in/out of waterfalls. My attitude in November was that I would not be able to do anything in Hawaii, that I wouldn't have the strength. What has happened to me is incredible! I know now that I will make it to 50 and will be here for 1 more XMas, at least. Knowing that gives me even more strength. SMILING NOW :)
Thank you to those who follow. I will go update my condition calendar and reply to a couple of posts shortly.
Fortunate One
Today I am 111 lbs!!! Not only did the loss stop, but I gained. I can finally eat normal food (including fresh fruits and vegetables). The eating key now is: WHEN (how often), PORTION SIZE and CHEWING (especially large blocks of proteins).
My blood work is phenomenal (normal) and my scan showed no advancement! Don't misunderstand, I am terminal, and it is building strength. Meanwhile, I am WELL and am getting stronger everyday!
I am Extremely Grateful for Medical Marijuana. Without it, my digestive track would remain at a semi-constant state of nausea. Those times without nausea, there still is NO appetite. Only pot has resolved this issue (and Riesling wine). I start to eat about 2 hours after completion of last meal. Keep portions smaller. I start my day with hot tea, switch to iced tea (sometimes) and Riesling starts just afternoon. Absolutely cannot drink any Water, Carbonated bevs, any Acidic or Beer. Mixed drinks, with juice (Mai Tai's) are awesome. The secret to my eating success (pot and Riesling). Unfortunately, I don't believe this would be a normal course for most people. It seems totally frikin ridiculous to me, yet this is what has been tried and tested (successful for me). Again, I am NOT advising this regiment.
My oncol is completely aware. He has been so amazed by my last 2 scans & blood work, he asked what I was doing. I said "partying like a rock star". We talked, told him everything. We had just gotten back from Carlos Santana in Vegas. Saw Ron White... plans for Hawaii. He told me to keep up with whatever I was doing, it was 'obviously working for me'. You know, I think the stress factor is a big key. TOLD the Doc: Pot takes the edge off, changes your outlook, gives you ideas and even laughs. The wine, well it helps my digestive track. I have drank VERY heavily my entire life. My liver and kidneys (and all other organs) are completely normal. Funny, I always thought it would be my liver. Either way, he agreed, it has nothing to do with my Stomach Cancer. Never will know how I got that lucky draw. He gave me my monthly B12 and sent me on my way, both of us smiling. I mean what is he gonna say to me? My numbers are damn near perfect and I gained weight.
The weight, I believe is muscle. Was on the go for about 20 days straight. My stamina has increased along with my strength. Snorkeled reefs, swam with dolphins, climbed up/down in/out of waterfalls. My attitude in November was that I would not be able to do anything in Hawaii, that I wouldn't have the strength. What has happened to me is incredible! I know now that I will make it to 50 and will be here for 1 more XMas, at least. Knowing that gives me even more strength. SMILING NOW :)
Thank you to those who follow. I will go update my condition calendar and reply to a couple of posts shortly.
Fortunate One
Tuesday, January 22, 2013
Statistics: the Importance of Early Detection
Not to be overly dramatic, but if you have digestive problems, please have it thoroughly checked out by a doctor. EARLY Detection is key!
The American Cancer Society's most recent estimates for stomach cancer in the United States are for 2012: (50% Mortality Rate-based on all Stages)
Stomach cancer is much more common in other parts of the world, particularly in less developed countries. It is a leading cause of cancer-related deaths in the world.
This is a disease that mostly affects older people. The average age of people diagnosed is 70. Almost two thirds of people with stomach cancer are 65 or older. The risk of a person developing stomach cancer in their lifetime is about 1 in 114, but it is slightly higher in men than in women.
Until the late 1930s, stomach cancer was the leading cause of cancer death in the United States. Now, stomach cancer is well down on this list. The reasons for this decline are not completely known, but may be linked to increased use of refrigeration for food storage. This made fresh fruits and vegetables more available and decreased the use of salted and smoked foods. Some doctors think the decline may also be linked to the frequent use of antibiotics to treat infections. Antibiotics can kill the bacteria called Helicobacter pylori (H pylori), which may be a major cause of stomach cancer.
The overall 5-year relative survival rate of people with stomach cancer in the United States is about 28%. One reason for this is that most stomach cancers are found at an advanced stage. The outlook for survival is better if the cancer is in the lower part of the stomach than if it is in the upper part.
I was Stage IIB initially which was upgraded to Stage IV nine months ago.
Yes, I am a
Fortunate One
The American Cancer Society's most recent estimates for stomach cancer in the United States are for 2012: (50% Mortality Rate-based on all Stages)
- About 21,320 cases of stomach cancer will be diagnosed (13,020 in men and 8,300 in women)
- About 10,540 people will die from this type of cancer (6,190 men and 4,350 women)
Stomach cancer is much more common in other parts of the world, particularly in less developed countries. It is a leading cause of cancer-related deaths in the world.
This is a disease that mostly affects older people. The average age of people diagnosed is 70. Almost two thirds of people with stomach cancer are 65 or older. The risk of a person developing stomach cancer in their lifetime is about 1 in 114, but it is slightly higher in men than in women.
Until the late 1930s, stomach cancer was the leading cause of cancer death in the United States. Now, stomach cancer is well down on this list. The reasons for this decline are not completely known, but may be linked to increased use of refrigeration for food storage. This made fresh fruits and vegetables more available and decreased the use of salted and smoked foods. Some doctors think the decline may also be linked to the frequent use of antibiotics to treat infections. Antibiotics can kill the bacteria called Helicobacter pylori (H pylori), which may be a major cause of stomach cancer.
Survival rates for stomach cancer
Some people with cancer may want to know the survival rates for their type of cancer. Others may not find the numbers helpful, or may even not want to know them. If you do not want to read about the survival statistics for stomach cancer, stop reading here and skip to the next section.
The 5-year survival rate refers to the percentage of patients who live at least 5 years after their cancer is diagnosed. Of course, many people live much longer than 5 years (and many are cured).
The 5-year survival rates for stomach cancer by stage are as follows*:
The 5-year survival rates for stomach cancer by stage are as follows*:
Stage IA 71%
| |
Stage IB 57%
| |
Stage IIA 45%
| |
Stage IIB 33%
| |
Stage IIIA 20%
| |
Stage IIIB 14%
| |
Stage IIIC 9%
| |
Stage IV 4%
|
The overall 5-year relative survival rate of people with stomach cancer in the United States is about 28%. One reason for this is that most stomach cancers are found at an advanced stage. The outlook for survival is better if the cancer is in the lower part of the stomach than if it is in the upper part.
I was Stage IIB initially which was upgraded to Stage IV nine months ago.
Yes, I am a
Fortunate One
Sunday, January 20, 2013
Why I Created this Blog
Information is power! I was very sick when I was diagnosed with Gastric Cancer. I did not have a working computer (no laptop) at the time. I had recently acquired a Smart Phone and quickly started learning how to go and research... and it was so scary, all I really could find were my odds. They were GRIM to say the least.
Japan seemed to have the most experience with this particular cancer and that wasn't getting me anywhere. I started searching blogs and I found a lot were other Survivors looking for help, answers... information. (Truthfully most of the bloggers seem to be loved ones, of Survivors.)
Important: I define a Survivor as someone still here! Still fighting! Still has QUALITY of Life! Also important is that I am an upfront, upbeat, honest person. If you can't handle the truth, don't ask the question. : )
MOST IMPORTANT seemed to be that we had 2 things in common - Caught too Late and to a lesser degree, long history of digestive troubles. Most of them older than me, and doctors tend to shy away from any aggressive treatment then. I was lucky. I was strong. I had to tell the doctors what I could do, that I was worth it. Here I am! I want to see others say the same too! :)
I did the best I could and usually was one head-a-step of my docs for most of the time. But that's me, that's how I got through it. It was the only way I could have any control over what was happening to me. I have spent the last couple of days learning how to create a blog and joined the CSN (Cancer Survivors Network). They have an area specific to Gastric Cancer. There are a lot of posts, mostly questions. I hit a bunch of the most recent posts, especially 'just joined' posts and showed them my profile from here and invited them to view my page.
I feel this is incredibly important if I can help just 1 person. It is all worth it. I have never communicated with any support groups, etc. My family and friends have been amazing. For the most part, I have spent all of my time since completing treatment; either running (appreciating travel) or resting/recovering from surgery and chemo.
Currently, I notice some anger/hostility over the last month (road rage too) and I believe I just hit another stage of my cancer. : ( oh well... 1 more down : )
Enough for now,
Fortunate One
Live for Today, Fight for Tomorrow :)
Japan seemed to have the most experience with this particular cancer and that wasn't getting me anywhere. I started searching blogs and I found a lot were other Survivors looking for help, answers... information. (Truthfully most of the bloggers seem to be loved ones, of Survivors.)
Important: I define a Survivor as someone still here! Still fighting! Still has QUALITY of Life! Also important is that I am an upfront, upbeat, honest person. If you can't handle the truth, don't ask the question. : )
MOST IMPORTANT seemed to be that we had 2 things in common - Caught too Late and to a lesser degree, long history of digestive troubles. Most of them older than me, and doctors tend to shy away from any aggressive treatment then. I was lucky. I was strong. I had to tell the doctors what I could do, that I was worth it. Here I am! I want to see others say the same too! :)
I did the best I could and usually was one head-a-step of my docs for most of the time. But that's me, that's how I got through it. It was the only way I could have any control over what was happening to me. I have spent the last couple of days learning how to create a blog and joined the CSN (Cancer Survivors Network). They have an area specific to Gastric Cancer. There are a lot of posts, mostly questions. I hit a bunch of the most recent posts, especially 'just joined' posts and showed them my profile from here and invited them to view my page.
I feel this is incredibly important if I can help just 1 person. It is all worth it. I have never communicated with any support groups, etc. My family and friends have been amazing. For the most part, I have spent all of my time since completing treatment; either running (appreciating travel) or resting/recovering from surgery and chemo.
Currently, I notice some anger/hostility over the last month (road rage too) and I believe I just hit another stage of my cancer. : ( oh well... 1 more down : )
Enough for now,
Fortunate One
Live for Today, Fight for Tomorrow :)
Saturday, January 19, 2013
Cancer Calendar/Summary of Treatment
Hello, I am new to blogging so your patience is appreciated.
I hope to help others in my condition by providing some of my experience LIVING with Stage 4 (metastisised) Gastric Cancer.
Here we are in 2013, it all started the spring of 2011 (at least that is, when the symptoms started) but we did not get a Gastric Cancer Diagnosis until January 2012.
Cancer Advancement/Staging Summary
Spring 2011 Developed Hietal Hernia (so we thought)
June 2011 Doctor examines, does bloodwork. Everything looks good. Advises continuance of self perscribed-Prilosec
Nov 2011 Hietal syptoms worsen. Can eat very little and no eating and drinking together.
Dec 2011 Throw up on way to work, cannot eat at all. Stool has black streaks.
Dec 27, 2011 Return to doctor. Informed that the black is blood and we need further testing ASAP
Dec 29, 2011 Endoscopy & Colonoscopy. Cannot properly inflate stomach for test. Leather Bottle symdrome.
Dec 30, 2011 CT of Pelvis & Abdomen
Jan 3, 2012 Diagnosed Gastric Cancer - Stage T2B
Jan 4th First Visit to Oncologist
Jan 5th Endoscope/Ultrasound
Jan 6th PET Scan
Jan 10th Chemo Port Installed
Jan 11th Echocardiogram
Jan 12th Chemo Class & 2 Surgical Consults for removal of stomach (total gastrectomy)
Jan 18th Begin CHEMO
March 27th Surgery- total gastrectomy. Diagnosed Stage 4- cancer was found to be metastisised (terminal). Feeding Pump installed into abdomen.
May 16th Resume Chemo
Aug 19th Remove Chemo Port & Feeding Tube from Abdomen
Aug CT Scan (every 3 months going forward). Results show minimal cancer activity (minimized by chemo)
Aug Oncologist takes leave of absence - and I have never seen her again - very disturbing
Sep 2012 Given my running shoes. Run baby run!
Nov 2012 Done with travel for a while, home for the holidays. Need 3 month scan. Have lost 1/3 my body weight (was on the thin side already).
Find new oncologist (like him) scan and bloodwork are good. Scan shows no advancement and bloodwork is damn near, completely normal!!!!
January 19, 2013 STILL HERE! 5'7" 100lbs and I am LIVING!
Feb 2013 3 month (routine) scan and bloodwork : Scan shows no signs of advancement. Blood work was amazing :)
March 2013 Vacation to Hawaii, exerted a lot of energy. Ate like crazy and Drank 1 bottle Riesling/day. Gained, size, weight and strength.
March 27, 2013 CELEBRATE! Year 1 without a Stomach. Winning!!!
April 1, 2013 Still Here! Kicking Ass at 111 lbs. Living everyday to the fullest.
April 26, 2013 Had a Complete Physical today with Primary Care Doc. Reviewed extensive bloodwork and urinalysis he ordered. Quoting him, "Amazing!", yeah, I know. 3 month scan & bloodwork results due at end of May. So Very Fortunate :)
END of SUMMARY
Lots of details left out... what would you like to know? Have you seen the stats? Ugly as hell... Live today while Fighting for tomorrow!
I hope to help others in my condition by providing some of my experience LIVING with Stage 4 (metastisised) Gastric Cancer.
Here we are in 2013, it all started the spring of 2011 (at least that is, when the symptoms started) but we did not get a Gastric Cancer Diagnosis until January 2012.
Cancer Advancement/Staging Summary
Spring 2011 Developed Hietal Hernia (so we thought)
June 2011 Doctor examines, does bloodwork. Everything looks good. Advises continuance of self perscribed-Prilosec
Nov 2011 Hietal syptoms worsen. Can eat very little and no eating and drinking together.
Dec 2011 Throw up on way to work, cannot eat at all. Stool has black streaks.
Dec 27, 2011 Return to doctor. Informed that the black is blood and we need further testing ASAP
Dec 29, 2011 Endoscopy & Colonoscopy. Cannot properly inflate stomach for test. Leather Bottle symdrome.
Dec 30, 2011 CT of Pelvis & Abdomen
Jan 3, 2012 Diagnosed Gastric Cancer - Stage T2B
Jan 4th First Visit to Oncologist
Jan 5th Endoscope/Ultrasound
Jan 6th PET Scan
Jan 10th Chemo Port Installed
Jan 11th Echocardiogram
Jan 12th Chemo Class & 2 Surgical Consults for removal of stomach (total gastrectomy)
Jan 18th Begin CHEMO
March 27th Surgery- total gastrectomy. Diagnosed Stage 4- cancer was found to be metastisised (terminal). Feeding Pump installed into abdomen.
May 16th Resume Chemo
Aug 19th Remove Chemo Port & Feeding Tube from Abdomen
Aug CT Scan (every 3 months going forward). Results show minimal cancer activity (minimized by chemo)
Aug Oncologist takes leave of absence - and I have never seen her again - very disturbing
Sep 2012 Given my running shoes. Run baby run!
Nov 2012 Done with travel for a while, home for the holidays. Need 3 month scan. Have lost 1/3 my body weight (was on the thin side already).
Find new oncologist (like him) scan and bloodwork are good. Scan shows no advancement and bloodwork is damn near, completely normal!!!!
January 19, 2013 STILL HERE! 5'7" 100lbs and I am LIVING!
Feb 2013 3 month (routine) scan and bloodwork : Scan shows no signs of advancement. Blood work was amazing :)
March 2013 Vacation to Hawaii, exerted a lot of energy. Ate like crazy and Drank 1 bottle Riesling/day. Gained, size, weight and strength.
March 27, 2013 CELEBRATE! Year 1 without a Stomach. Winning!!!
April 1, 2013 Still Here! Kicking Ass at 111 lbs. Living everyday to the fullest.
April 26, 2013 Had a Complete Physical today with Primary Care Doc. Reviewed extensive bloodwork and urinalysis he ordered. Quoting him, "Amazing!", yeah, I know. 3 month scan & bloodwork results due at end of May. So Very Fortunate :)
END of SUMMARY
Lots of details left out... what would you like to know? Have you seen the stats? Ugly as hell... Live today while Fighting for tomorrow!
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