Good afternoon: I asked Janet to send me your email addresses so that I could correct some misinterpretations you received, give you all the info as well as provide periodic updates.
I have also added some emails: Barbara’s (my wife), Frank, Jr. and Ashely’s (my son’s and his wife’s), Diane’s, Arthur’s, Richard’s, and Victoria’s (Diane’s kids) and MaryJeanne’s. I think Bill Mallette’s accurate but not sure about Al’s.
Around Christmas my doctor told me that I was a candidate for diabetes if I didn’t lose weight. So I started losing weight in a normal process. Then in March I started losing more than I felt was normal and my appetite started to wane. Still didn’t think anything was wrong. Then in April my GP noted that I was losing more than normal, losing more than 2 pounds per week. He indicated that I moderate what I ate.
Then six or so weeks ago, I started vomiting a black substance – old blood and went to my GP and he referred me to the GI doc. Then about 5 weeks ago, I vomited fresh blood and went to the ER. The ER doctor decided to run an abdominal scan and that scan showed evidence of pancreatic cancer. Not only was the whole pancreas affected, but also many of the abdominal organs, especially the small intestine and possibly the stomach. In addition, they drained fluid from the abdominal cavity and found that contained cancerous cells as well. Samples removed during an upper GI endoscope verified that the duodenum was cancerous but that the stomach did not contain cancerous cells but the likelihood of precancerous cells was great. I also had a portal surgically installed into the jugular vein in my neck for ease of administering chemo. I spent 6 days in the hospital this time.
The week after my release, my cardiologist wanted me to have an IVC filter (blood clot filter) inserted – surgery 1. Then my GI doctor scheduled surgery number 2 – insertion of a stent into the sphincter between my stomach and duodenum. My sphincter wouldn’t open to allow even fluids through, hence my vomiting and excessive weight loss – my body had to use its own protein and fat to survive. That took longer than he planned since he had to use a fetal catheter to open my sphincter - it was so tight.
The second week out of the hospital was my first chemo session. This included a 5 hour infusion in the oncologist’s clinic as well as a 48 slow drip pump at home. During the clinic infusion period, I had an allergic reaction to one of the drugs – my tongue swelled up and Benadryl didn’t slow or stop the reaction and I stopped that drug. Two days later, when I went back to have the drip pump removed, I found out that I was having another allergic reaction to that last drug. As a side effect of chemo, I had thrush in the mouth. No big deal, they prescribed a pill for it. The second night I took the pill, my heart rate jumped to 200 and the beats were shallow. Barb called the EMTs and I was taken to the hospital. I settled down a few hours later. Upon my release from the hospital, they suggested hospice.
Because of these reactions I stopped chemo from the local oncologist. A couple of other comments and a letter he wrote to my GI doctor made us question his qualifications. We had already scheduled a consult with Moffitt Cancer Center for a second opinion but it is later in the month. I just wanted to get a jump on the chemo. A mistake on my part.
The cancer is so widespread throughout my abdomen and the tumors so large that one can feel them. I have had so many people feel them – doctors, nurses and medical students. It’s not often that a medical professional gets to feel tumors from the pancreas. I have also let Frank and Ashley and Meghan and Arthur feel them. The others haven’t been around yet.
In the meantime, my GP and GI doctors have recommended palliative care – managing pain but retaining quality of life. Both indicated that with the widespread cancer there is no chance of increasing my quantity of life. I’ve been seeing my GP for 17 years and he doesn’t pull punches. Barb has been seeing our GI doctor for 5 years and he’s the same way.
My GP referred us to Vitas Hospice and I’m glad. They have been a blessing. They brought me a hospital bed and walker – yes my legs are so spindly and weak. We have a team of people at our beck and call – nurse, CNA, social worker, chaplain, doctor (which just happens to be my GP), volunteer. Barb is extremely relieved as she is my rock and caregiver. I couldn’t handle any of this without her.
Our consult with Moffitt is the 24th of May. This consult will decide if there is another course of action we can take or if palliative care is the best option. I will inform you of our decision. I do not make these decisions lightly or in a vacuum. Barb is my partner and her opinions and comments weigh the same as mine. Frank is also a surrogate and if he isn’t part of the decision making process he’s informed with all the details we have. He’s been our backbone in terms of support of all decisions.
Most of you don’t know that I also have a heart condition (atrial fibrillation) that greatly affects what chemicals and how much physiological stress I can handle. So I am a special case.
Oh, my current weight is 168 and I’m skin and bones. But my stomach is still big – tumors. I don’t recognize myself when I look in the mirror. I’m serious. I see an old, emancipated man staring back at me.
I have minimal pain – just a shooting pain in the stomach if I move in the wrong way or too fast. I’m eating about what it takes to support my life so I think I’ve slowed the use of my body as a fuel source. Thank God a certain chemical has been approved for medicinal purposes. It helps my appetite. I can eat anything I want except heavy solid food, breads and most seafood. And for me a mortal sin – no spices and I love spicy foods. Sounds appetizing doesn’t it. I eat a lot of noodles and rice with large amounts of gravy or broth with maybe very small bits of meat added for protein. Fats don’t do well for me. Yogurt, both regular and frozen, is one of my mainstays. My GI doctor has informed me that I’m not going to eat any better than this for the remainder. I look at it as I’m still eating.
As far as my attitude, I’m trying to maintain a positive outlook. Allowing nature to take its own course of action is not in my make-up. I’m usually in control of how my body reacts to stimuli or at least try to control those stimuli. However, I in essence did take control by making the decision to enjoy my quality of life.
Don’t get me wrong – I am not looking forward to dying. Yes, I understand and believe in life everlasting. What I don’t look forward to is being separated from my family. I regret that I will be missing them, but I look at it this way – I have a luxury that you don’t. I know I don’t have quantity time so I can spend quality time every time we get together.
The next email will be the update from our consult with Moffitt shortly after the 25th. Feel free to email me as a group or individually. I’m enjoying being in contact with you. It’s been so long and so much has transpired in our lives that being in contact with you is a blessing. Charlene suggested a family messaging system through Facebook instead of email. I’m not savvy enough for that but I’ll have Frank look into it.