Sense of tumor. 

I thought it be about time for an update. Things are pretty quite on the Cancer front. Did some blood work Thursday, have to pee in a jug of acid all day tomorrow and go to oncologist Monday. 

I can honestly say that I have never been so tired in my life. I was more rested when there where 2 babies in the house then I am now. It’s more annoying then anything. No caffeine which totally blows and a nap is just a tease. And I constantly feel like I’m in slow mo. Two months ago I would sprint up the stairs and run with my dogs. Now, my dogs pull me up the stairs. I feel like a pathetic jello mold. 

Since radiation, I constantly feel like I have a broken rib where my liver is located. It’s bearable but really weird. Like a shocking stab. Sleeping on my right side is a no go. Hoping it means that the tumor is getting its ass kicked. Going to mention something Monday. 

Other then that measly stuff things are as normal as they get in our house. Elijah keeps asking me if I still have my green monsters. He gets upset because mommy can’t really pick him up anymore……. Pathetic jello mold.  

I promise I’m not depressed. My post is kind of coming off a little blah but I’m good. I have amazing people supporting me and I could not ask for better people by my side. What’s really great is that they are all a bunch of sarcastic A-holes just like me. Makes cancer a hoot. 

 

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Radiation seedling suckage

Went in Wednesday for Y90. Just like for mapping; socks only, IV, blood work, got a pillow cushion on my butt this time, then off to imagining. Things were a little more relaxed this time since they knew what medications they could and could not use. Morphine, Fentanyl, Pepto, Ibprofen, Zofran, Marinol on the no go list. Dilaudid on the unlimited list.

This time I got to see the room they did the procedure in. But only briefly. Procedure took 5 hours when it should have taken 2. Ran into a major complication. The fistula opened itself back up and attached itself to a bunch of vessels. Dr tried for over an hour to close the fistula but it just kept attaching to new vessels. Total bummer. So, they only got to treat the right side of my liver. Bubba was the only one to get the seedlings. They now have to figure out a new game plan to treat the other 2 tumors. Not sure when that will be but my body is totally up for a vacation from doctors and needles. So, I’m down for the wait. Also, I have to start seeing a cardiologist regularly because I now have high serotonin levels that are causing damage to my heart. Fa-freakin-blah. (Put a little thing at bottom of blog.)

Woke up in treatment room soaking wet with an a-line in right hand. Oh yea, no catheter this time so I totally peed myself. Had to pee so bad when I woke so they stuck a bed pan under my butt. Do you know how hard it is to pee laying down?!?   

Laying flat 6hours……. When it gets closer to sending me home they take me off the pain meds to see how I’m feeling. Extreme chest tightness, soreness and then I start throwing up, which gets me a 24hour stay in the cancer hospital. Where I am completely in and out of sleep the entire stay. Doped up on pain meds, do blood work a few times, nausea injection, tums, indigestion meds. Saw a bunch of different doctors including my own. Everyone was on the same page with treatment for the radiation side effects so they sent my waddling butt home to rest comfortably. Didn’t get out of bed Friday. Today I’ve gotten up some more but still completely worthless. Liver is kicking my butt today. Can’t stand for more then 5 minutes without blacking out, entire right side aches and I’m really weak. Going to continue trying to get food in me and walking tomorrow. Praying I can go to work Monday but, we will see. The only thing that sounds good these days is SLEEP. 

Increased Risk of Cardiovascular Disease

According to the “Psychosomatic Medicine” article, higher levels of serotonin may contribute to harmful biobehavioral stress responses from the cardiovascular system. As a result of these stress responses, it is possible to experience higher levels of risk for future cardiovascular diseases. MayoClinic.com notes that serotonin syndrome, where high levels have built up in the system, can contribute to cardiovascular disease by contributing to incidences of irregular heartbeat. This is considered to be a very serious effect of serotonin on cardiovascular function, and should be reported to a doctor immediately.

Mapping isn’t just for pirates

Since I’m sitting here in massive pain watching our boys play pirates with pool noodle swords, thought I would let everyone know how mapping went on Tuesday. 

I always have Chris and the boys drop me off at the hospital. I make them leave after I do registration. They don’t need to watch this mess go down. After this I’m normally told I can wear only socks (which I always wear bright funky knee highs) and I get an IV. Only took 2 sticks Tuesday. Had to go for a CT first; does everyone remember how much I hate contrast? I LOATH contrast. It’s even more awesome when you have a total witch of a nurse giving it to you. 

After CT I was wheeled into a hallway waiting area where I met with the anesthesiologist and his assistant. Very sweet. Chatted for a bit so she could figure out the perfect cocktail for me. My nurse Elizabeth hooked me up to a Sandostatin IV and that’s when the fun started. The stuff makes me super stoned. So I went into 20beers and to much pot mood. Slurring words, squinted eyes; the works. I do remember everything which makes the entire thing just weird. The doctor that was doing the actual mapping came to talk to me because they ran into a few complications. When they did the biopsy they created a fistula (fusing together of veins that should not be fused) and I had a very small vein running to my bowel. So he wanted to inform me that he was going to have to go in blind and hope for the best. Me and all my positive encouragement that I spread like wild fire when I’m at the hospital just looked at him and said “You got this.” (I compliment and thank and encourage every single person I come in contact with with all this crap. Why bloody not.)  

Then the anesthesiologist opened up her tool box and starts “how about some of this……. A little of this……oh, definitely this…….. How you doing?” And that’s the last thing I remember. They had to put me completely under because my episodes are so bad they had to have complete control. Procedure took 4.5 hours. I came to in recovery with now 3 IV’s, a catheter, busted lip and told not to move for 6hours. (Lip from ventilator) And guess who my recovery nurse was? Rolando!! The one I gave a heart attack to with an episode before I knew I had cancer. He’s the greatest.

They did the mapping successfully, no issues. And went ahead and ordered the seedlings for Wednesday. How I’m doing now 4 days out? Like being hit by a mail truck.  

 

Ghost Disease

No, I don’t look like a cancer patient. My hair isn’t going to fall out currently. I won’t be doing chemo any time soon. And I won’t go through all the chemo side affects that people expect to see. But just because you can’t see it doesn’t mean it doesn’t exist and doesn’t mean I’m not going through hell with it.

Oncologist today went well. Aren’t going to continue searching for primary at this time. There are some other things they can do to find it but they are very painful and my oncologist loves me to much to put me through painful things that I don’t absolutely need. I know it’s weird and unsettling. I get it. “You have cancer but we can’t find it.” It’s actually a very common thing and I’m ok with it at this moment. After I get through all this Y90 stuff I will be scanned every 3 months to see if the primary shows its face. So, I’m telling people I have Invisible Cancer. It’s really rare and only the best of the best magicians can find it. 

Self injections did not go so well. So, today I got an injection of Sandostatin which will last 4 weeks. My butt cheek still hurts from the shot. No episodes. Just feel like I’m on a boat ALL DAY LONG. It’s really weird. Few other side effects but, I’m dealing with them. http://www.rxlist.com/sandostatin-drug/indications-dosage.htm

Tomorrow 7:30am have a CT (woot woot) and then I will be put under to do the mapping. Hopefully the tumors don’t get to pissed off and I get to go home that night. Definitely nervous, But who wouldn’t be. Stuff sucks. 

Please keep my family in your prayers. As you can imagine this is not easy for any of them. Focus your prayers on them finding a place of understand and copping. Take me off of your prayer list this week and put them and yourself on it. No matter your relationship with me if you are reading this then it is affecting you. Know that I love you and so does God. Pray for you. 

laugh about it. we do

Scheduled

They didn’t find anything in the endoscopy today. This is bad and good I guess. Good because I don’t have pancreatic cancer and they don’t have to cut out any of my GI Trac. Bad because they don’t know where my primary cancer is. My oncologist said that we will stop looking if nothing showed up in the endoscopy. I meet with her Monday so going to see if she will give one more search before stopping. (Asking to do brain scan) 

People will go their entire life; how ever long it may be, without knowing where their primary cancer is located. I am not a fan of this but, we will see how the conversation goes. 

So……. They scheduled the Y90 for April 22nd. In all honesty, I’m terrified. Pretty sure I have developed anxiety in the past 2 weeks. Tuesday will be mapping day. Will take all day. This is when they have to map out the path for the catheter in the liver. Also have to do some preliminary test before mapping, same day. Not sure what all that entailes yet. Don’t know why I still need to do preregistration at the hospital anymore. Registration Hannah knows all the answers when she calls and RN Rolando remembers my kids names. I need a fast pass.  

On a side note: coming out of anesthesia after endoscopy what do I start talking about? Kale. Telling her all about Izzy loves kale and my mom dehydrates it. And Elijah loves carrots. Poor nurse

Injection jection

Gave myself my 1st Octreotide Acetate injection tonight. Took me a good hour of staring at the needle and my belly and a hardcore hysterical cry before I could do it. Should have waited for Chris to come home. I’m expecting to have a melt down a few times tomorrow since I have to give these to myself 3 times a day. I know people say “you get use to them” and “just do it” and “just get it over with.” Screw every last one of you people. Unless you have had to give yourself an injection then just shut the hell up. Other then the fact that it hurts, the psychological and emotional aspect of it is terrible. I don’t want to hurt myself. I don’t want to shove anything into my belly. I don’t want to put myself through this 3 times a day. It hurts; physically and emotionally. There is no getting use to that.

I know my blog has been all medical talk and that was a rant but, I think I have errand it after today. Back to medical.

The injections are to stop the episodes. Takes a week for it to build up in my system so, let’s see what happens. Insurance finally came through and we ended up owing $68 for 42 injection after they paid their part. Cancer is starting to become expensive. 

My tumor board is suppose to be tomorrow and if everything goes as planned, I should be scheduled for surgery next week. 

Oh the many joys of being a tumor owner.

Being patient

  1. pa·tient
    ˈpāSHənt/
    adjective
    1. 1
      able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious.
      “be patient, your time will come”
I am suppose to have my tumor board this week since it was cancelled last week because they had 13 cases and didn’t get to mine because my tumor is labeled as “slow grow”; so I was pushed to the bottom of the stack because they ran out of time on Thursday. It is what it is. I do have an endoscopy scheduled for Friday. Going to explore my GI trac and pancreas for the primary. I’ve got a feeling they aren’t going to find anything but, we shall see. 

Still nothing from insurance.

I read my MRI report, they actually gave measurements of the tumors. In mm of course and since I don’t live in Europe I asked Dr. Google to do inches for me. Bubba is 2inches by 1.6inches. The other highlighter spot is 1.1inches by .8inches. And the tiny highlighter dot is .55inches by .59inches. And then there are “several metastatic legions” Like having sprinkles on my liver. That’s a 4.40 inch area of tumor. A normal liver is about 8inches by 6.5inches. I normally like math, not this math tho. 
 
Monday the 13th is the Echo Cardio which is looking for plaque build up in my arteries. Yea, the episodes can cause that. No, plaque isn’t just on your teeth. 
The episodes are getting worse. Getting to the the pass out point more frequently.  We have reevaluated my diet. Still need to go to the nutritionist but, back to vegan. Minus the Reese’s eggs I am buying tomorrow. Well worth the episode.  

Duodenal diverticulum: bacterial overgrowth http://www.medicinenet.com/duodenal_diverticulum/article.htm – yea, I had no clue either.