Facebook announcement

I finally put together an announcement to tell my Facebook friends about this cancer...it turned out pretty good, if I do say so myself!   I got many positive comments (and they're still coming!).




Well Facebook friends & family, perhaps you've noticed that I haven't been posting much recently. I thought you might want to know why—I have recently been diagnosed with Pancreatic Cancer. Yes, I know it's not a very good thing, but now my new motto is “It is what it is.” I also say “I'm taking it one day at a time.”


So, in keeping with those thoughts, I'm not looking for sympathy, just understanding and positive vibes. And, I know I'll get that—Facebook has connected me with some fabulous people: I've reconnected with so many old High School buddies from California that I never would have before Social Media, I've met many eBay friends around the country (some I'll never meet in person, but I still consider them friends!), and I've even found shirt-tail relations that we never realized were out there (a name like Osenbaugh does stand out LOL).


I will be starting chemo treatments next week, but in the meantime the oncologist has ordered me to gain weight. I never thought I'd hear that from a doctor! So, I get to sit at home, play on the computer, watch TV, take naps, and eat whatever sounds good at the moment. Still, I'm trying to eat healthy: I'm having mashed potatoes and gravy for lunch, with a fruit smoothie to wash it down and maybe a muffin on the side. It will be just a little, because by definition this pancreatic stuff makes you loose your appetite and many foods do not process as it filters through your body. So I try to eat little bits—just more often.


I'll be glad to answer any questions—I've learned a lot about Pancreatic Cancer in the past month. It's not a well-publicized disease, nor does it get a lot of research funding. But hey, I'm in good company: Steve Jobs and Patrick Swayze had this. So if you want to ask me questions, either publicly or on private message, feel free! I'll try to get back to you in a reasonable time frame, but I just might be taking a nap at the time (another perk: I get to nap whenever I want!).

Diagnosis, etc.

This is the email that Saffron sent out to family about yesterday's doctor visit—it pretty much covers it all....


The cancer
*Adenocarcinoma (Dr. Copur says "This is the worst of the worst" speaking of cancers. One of the others on the short worst list was some brain cancers.)  
*Stage 3-4 (4 being the most advanced). It is locally advanced and going into the nerves. (there was no mention of lymph nodes).
*The blood marker right now is 99. They will test this again after the round of chemo. The objective is to get this number to go down.
*Dr. Copur was very clear in the fact that the tumor will re-grow (even if in remission or has been surgically removed after shrinking).
*In the future, there is a chance that the cancer will become resistant to the chemo, then they would need to change the type administered.
*The only pain that she is complaining about is back pain that she has had for a while, but did not realize it was related to the diarrhea symptoms. (That is understandable, as we've had similar descriptions with Darren's dad recently.) This still baffles Dr. Copur, as he sees much worse pain from most patients when the cancer has progressed this far. If/when the pain becomes unbearable, there are pain blockers they can give. (Our experience, these are mildly helpful, only dulling the severe pains.)
 
Chemo
*The chemo cocktail has 4 drugs in it. They are administered right in a row...90 minutes, 2 hours, a syringe (in the port), and then a 48 hour pump that will be worn in a small bag that can go around her shoulder like a small purse or with an elastic belt around the waist.
*To start with, there will be 4 rounds of chemo, each 2 weeks apart.
*After the round of chemo, a scan and cancer marker blood tests will be repeated.
*The desired result is for the tumor to shrink and put it into remission.
*The chemo will decrease the immune system, therefore, the eating goal during the next 2 months is on maintaining weight, not on gaining.
*She was told to keep a log of her chemo weeks so she can get ahead of the nausea with anti-nasia medication. Then, she can continue to eat during the middle of chemo administration weeks.
*Side effects listed - loose bowels, numbness, tingling, abdominal pain, sensitivity to cold foods/drinks, nausea. (nothing was mentioned about hair loss, and we didn't ask) I'm sure that's something the nurses will go over next Tuesday, as we were told there will be a lot of education that day.
 
Life Expectancy
*With this newer chemo cocktail, life expectancy has increased from 6 months to 10 1/2 months.
*If it shrinks (and best case scenario) they are able to operate for removal, then up to 2 years. Dr. Copur's words "If we can shrink and operate, maybe 2 years. We hope for a year or two, but not more than that."
 
Time lines
*CAT scan 12/26/2013
*1st visit with Dr. Copur 12/30/2013
*Kidney blast #1 12/31/2013
*Consult appointment with Omaha pancreatic cancer specialist 1/2/2014
*Biopsy #1 1/6/2014
*Kidney blast #2 1/13/2014
*5 business days of retesting on biopsy #1 with inconclusive results (phone call about this on 1/14/2014)
*Biopsy #2 1/16/2014
*Conclusive cancer diagnosis late in day on 1/17/2014 with instructions that Dr. Copur's office would call at the beginning of the next week with further instructions.
*Received a call in the morning of 1/22/2014 asking her to report for port to be put in the next day (without having seen any doctor for treatment plan/info/etc.).
*Annual cardiac tests and visit with Kidney doctor which had previously been scheduled 1/23/2014
*Consult/Treatment plan/cancer info with Dr. Copur 1/27/2014
*Kidney blast #3 & port install (during same anesthesia, 2 different doctors coordinated to limit the number of times for surgery/anesthesia) 2/3/2014
*Chemo treatment #1 2/4/2014
 
Diet
*Prescribed Megase to help with appetite and hopefully a bit more weight gain before treatment begins.
*Continue to push high calorie foods, whatever she wants.
*As she's still only able to eat small amounts before becoming full, the dietitian gave suggestions of power foods that will pack the most calories and proteins with a small portion size. Some suggestions were yogurt (Greek has more protein & calories), Carnation breakfast drinks, nuts, & cheeses.
*During times of sensitivity to cold foods, try warming up the Carnation (like hot chocolate). She liked this idea.
*Keep up eating proteins, as they will help with energy and weight gain/maintain.
*Stay away from tomato based foods, as they can produce extra acid. (instructed to maintain current acid-stopping medication)
*Spicy foods might begin sounding good as taste bud sensitivity will decrease. These foods may taste good, but spicy goes in and comes out spicy. (sorry for the ugly word picture)
 
Activities
*Maintain the current level of housework. This will keep up muscle mass.
 
Other suggestions we received
*Help out with a meal or two in the middle of the weeks of Chemo (Let me know if you are interested in this and I'll make up a schedule. If you are out of town but still want to help in this way, some places deliver.)
*Minimize stressors to her.
*Ask about how she feels instead of telling her what we think she should do.

Just Sitting

I just sit around and do not much of anything these days. The kidney stent is the main problem—it makes me want to head to the bathroom constantly. It won't be coming out for another week! I can sit (or lay) around for 3 or 4 hours without having to run to the toilet, but then once I get up and move around the urgency to go is immediately there. 
 

I have been researching pancreatic cancer on the internet—not much good news there. I think mine is at stage 3. We will know more on Monday after talking to Dr. Copur. I have lots of questions about this for him.

Catching Up

Since my initial 2014 entry I have not felt like writing--I did a lot in my head as I lay around on the couch, but none of my words were written out.  My energy levels are improving with a diet change and with a lot of rest; it will be interesting to see how often I feel like writing.


My first biopsy (1-6-2014) results returned inconclusive--they said the cells were "Atypical" and they wanted to do another one--this time with a needle instead of the scope down my throat.


The needle biopsy was done yesterday.  It wasn't as bad as I'd envisioned.  In fact, since they didn't put me completely out, I came out of it more energetic than I've been in a long time. 


Brother-in-law Steve (a registered pharmacist) has been advising me on diet and managing my enzyme pills.  So I have a pretty bland diet--no chili, tacos, etc.  I get toast, eggs, baked potato, noodle soup, baked chicken, etc.  The enzyme pills have to be taken before any food; they help my stomach digest and process anything I eat that have fats or protein in it. 


I have been gaining weight since starting on the enzyme pills two weeks ago.  The hospital scales showed 107.8 pounds yesterday morning.  A week & a half ago it was 103.5. 

Happy New Year!

New Year's Day - 2014 (Wednesday)

I'm sure this will be an extra-ordinary year.  The past 2 days sure have been different than my normal daily life!  At noon on Monday I had a CT scan of my stomach area--within 15 minutes after it was completed my doctor's office was calling me to say come in for a consultation immediately--and bring my husband.  It's never good when they say I need to bring John with me.

John and I got to Jeanne's office about 1. Jeanne explained that a large tumor was on my pancreas.  By large, it is approximately 2" by 2" (and this is on an organ that is just 6 inches long itself).  I also had two kidney stones that needed to be removed as soon as possible. 

Our discussion revolved around the pancreas, it's location, etc.  I really didn't know much about the pancreas until Monday afternoon....but I'm learning quickly.  The main function of the pancreas is to help the stomach digest food.  It is located just behind the stomach. When it is not working properly a person tends to loose weight and have diarrhea because of poorly absorbed food. 

Jeanne indicated this was an urgent situation--she made appointments for the next two hours for me with other doctors.  The first thing to do she said was get the kidney stones taken care of (I will need properly functioning kidneys throughout this).  Then at 3 I was to go to Dr. Copur (pronounced Cho-pur), the head of the Oncology department. 

My appointment with the Urologist (kidney specialist) was right away.  We scheduled a procedure for the next morning to put in two stents and remove the larger stone. 

Seeing Dr. Copur was interesting--he had the same sense of urgency that Jeanne did.  Long story short, I am going to University of Nebraska Medical Center (UNMC) tomorrow (Thursday) to see a Dr. Quan Ly (pronounced Lee)about a biopsy and possible treatments. Dr. Copur says she is the best there in Omaha. 





 

Important measurements to know

Just because you can crochet toilet paper doesn't mean you ought to.