Affect vs effect

I try to keep my post few and far between because I don’t want cancer to affect you guys as much as it affects me. Plus no one wants to read about my medical crap weekly. I don’t want to read about it either. 

I had scans the last 3 days, things looked pretty much the same. Will get the CT report on Monday. All good things. Have liver pain daily but hoping it’s just from regrowth and scar tissue.  Officially have IBS which is flusharific. The injections are continuing to work great and I’m down to a few episodes a month. Positive city. 

What I want with this post is to give you guys a glimpse into the emotional personal affects of my cancer…………

Ready?

Deep breath

The 3 day scans are the ones that I have to get a radiation injection for.  I am not to make physical human contact for any extended period of time for a week due to the effects of radiation.

My husband has to sleep on the couch.

Which may seem like no big deal to you but to us right now it’s devastating.  We have both been fighting with everything we have over the last month to save our marriage. Him sleeping on the couch is for his safety yet it’s like throwing a rock at the glass house of our marriage. (Cue the anger.)

My 4 year old doesn’t understand why he can hug and kiss me 3.2million times a day. Or use me as a jungle gym. Or stand directly next to me just to be touching me while he’s playing. 

For him, me saying “You can’t hug mommy a bunch for a few days” just crushes his little spirit. He started crying because he thought it meant he could never hug or kiss me again. (Cue mommy tears.)

My 5 year old is having a hard time not climbing into my bed in the middle of the night. 

Last night he was up at 2:30am, headed to my room, remembered he couldn’t get in my bed; so he woke me up very upset. He agreed to a good daddy cuddle on the couch while watching Disney channel. Izzy never went back to sleep. Tonight he has scooted over to cuddle with me on the couch multiple times only to be denyed the cuddle and asked to move back to his side of the couch. “Sorry Mom.” No little boy should feel the need to  appologize to his mommy for wanting to cuddle with her and not being able too. We ended up setting a timer for a 4minute cuddle session. 4 minutes is not long enough to cuddle up with your little boy who will one day decide that cuddles are for babies. (Cue the heartbreak.)

Cancer causes me to miss some of these little things that they will soon out grow. I try to be strong and remind myself of all the cuddles and hugs I have been blessed to have. And I tell myself that my marriage is stronger then I think and that its stability will only be shakened and not broken for a few days. When cancer tries to pull me in the pit of depression and anger I just turn to God and go through all of the blessings he has given me and will continue to let me enjoy each day that I draw breath.

But honestly, it’s freakin hard to make your mind go to God when all you want to do is cuddle with your kids while watching a movie and fight with your husband over who gets the middle of the bed. Cancer continues to shake my marriage, rock my kids and strain my faith.  

I just want you guys to know, I am human. I struggle. I am only so strong. And I completely agree with the F*** Cancer movement. 

I selfishly want my cuddles every time they are offered damn it!! (Cue my frustration.)

(End Scene)

One down, many to go.

March 18th was my 1 year Cancerversary.  

 
In the last 365 days I have been diagnosed, scanned, stuck, mapped, injected, debulked, scanned, radiated, cathetered, IV-ed, scanned, stabbed, dissected, studied, scanned, cut, reduced, allergic, knocked-out, reviewed, implanted, monitored, did I mention scanned? 

Most days having cancer hasn’t really bothered me. I figure, if someone needed to have cancer it might as well be me. I’m totally cool with it; like a cucumber. With that being said; I have still cused out God, cried until I passed out and have been beyond the realm of pissed off. I am human after all. I have even been jealous of other people’s cancers. I have felt completely alone and considered suicide. I have been so depressed I felt like there was no escape.

I’ve prayed a lot.

I have received so much undeserving love and support it brings tears to my eyes. I have acquired a ton of spectacular people and have been shown how amazing people already around me really are. I have had my eyes opened and my mind slowed. 

I have been given a new view point and I have been over filled with joy, loving joy.

 I have gotten to and will continue to experience and learn things that most people will never even dip their toes in. Makes me sound super smart when I bust out medical terms.

I love the life my cancer has given me. I love my cancer.
With 365 days behind me the cancer journey is really just beginning and it’s been pretty badass thus far. Cancer is now and will continue to be a huge part of my life but it will not BE my life. 

With all that being said, 365 days in, I am completely TUMORLESS!

 

Breaking News: Scan reports are in

1 MRI

1 CT

1 Octreotide Scan: 3 days long

2 injections of contrast

1 drinking of contrast

1 injection of radiation

9 viles of blood

1 jug of urine 

All in 1 week

And the results are in………….

Everything looks FANTASTIC! My radiation oncologist was really excited with the results of the surgery and of the scans. He came in the room hugging me saying congratulations. My first thought was “Wait, it’s impossible for me to be pregnant.”

My body is still healing so the stomach issues that I’m having will hopefully reside. If not, then I’ll do the camera pill swallow thing and go from there. I do have a dislocated rib which I pretty much guessed already. It’s from the surgery and very common. Have an unlimited supply of pain meds for that. So when I start driving a BMW, I’ve become a dealer. 

There are 3 tumors still in my liver which I was already aware of. They are stable and shrinking. The largest is the size of a sunflower seed. Yes, you read that right. A SUNFLOWER SEED!! 

  

I will continue to do my monthly injections and do scans every 6 months (use to be 3 month scans) and see all my doctors like normal.  I will continue to have all the nifty carcinoid side effects since I have and always will have carcinoid cancer. 

I go back to the specialist March 16th to see what all he has to say and hopefully get the tumor biopsy results. 

So all in all, I don’t plan on dying from cancer any time soon. 

Post Post Surgery

Most of you followed my progress on Facebook so I wasn’t in a hurry to update. Plus, most nights I’m in bed by 9pm. So, here’s a little recap and a “Where is she now?” for your reading pleasure. Surgery went great. They removed my appendix, gallbladder, sections of my small and large intestine (this is where they found my primary located), some lymph nodes, and 25 tumors from my liver ranging from the size of a softball to a pea. There were some tumors they could not take out so they applied chemo directly to my liver. Cool fact, they froze all of my tumors to use in research studies in the future. To think, Bubba could find the cure to NETS.  

ICU was hardcore. I peed green for 2 days and got to give myself pain meds by pushing a button connected to my central line. Speaking of IV’s; when I came out of surgery I had 4. One was even stitched into my neck; called a central line. I do not recommend benedryl through IV. Fablah. The thing in my nose is not oxygen, it’s a CO2 monitor to make sure I didn’t OD on pain meds. Dumb thing beeped like crazy if you took it out. My incision was glued together which was neat. And I repeatedly asked for root beer floats whenever a doctor came by. No luck tho. Did con a nurse into apple juice. It was heavenly.  

  
  The week in the hospital had its good days and bad just like everything else in this world. I LOVED all of my nurses (except the ones on thanksgiving; we aren’t going to talk about that day tho) My nurses: Kia, Jamie, Rosa, Mike, Amanda….all fantastic. The floor I was on is the only floor carcinoid cancer patients stay on and all of the nurses are trained in carcinoid care. 

When I was released I stayed at the Hope Lodge a few days. American Cancer Society is pretty badass for having these lodges by the way. 

Once I made it back home I had a rough go at things. Lot of pain, lack of appetite, emotional strain from being useless, fever, chest pain, fatigue and hives. You would have thought I was 85. Ended up in the ER a few times from hives. Funny thing; they had to do a chest x-ray in ER and dr comes back and goes “your liver looks like it’s been through a war zone.” 

I am still recovering. I can finally lift over 10pounds and the outside of my scar is healed. Still having issues figuring out what I can and can’t eat and I get tired really easy. But, I feel good. Finally over 100 pounds which is awesome and I can put Elijah in a shopping cart. And no more hives! I have tumor marking blood work on Jan 14th and a crap load of scans on Feb 15th which I’m not looking forward too. After that we will know where things stand. I have to go back to New Orleans at the end of Feb for a follow up. 

As I have said from day 1; out of my hands and in God’s.  
 

Caution: Sit Before Reading

Well hey there guys; Long time no blog. Bet you were wondering what was going on. So here it is……

I’m still breathing. 

Went and saw a Carcinoid Cancer Specialist in New Orelans. He sent the extra liver tissue from my biopsy off for some super duper testing. Got back the results and it is declaring that there is a 96% probability that my primary is in my mid gut. Hooray for known primary!! So there is a game plan. Before I get into it please know that I want to know all the questions and concerns you have, ask them. Even if you think it’s dumb or I have answered it before ask it anyway. It helps me so much when things are asked because I get to view from different points and helps me to process differently and think of things I need to address. 

The Game Plan

Remove primary cancer located in mid gut

Remove a section of small intestines

Remove a section of large intestines

Remove all lympnodies 

Remove gallbladder 

Remove current tumors in liver and applying chemo

Exploratory on remaining intestines, appendix, rectum and pancreas. 

Doing all in one kick ass surgery. And I’m going to have one bitchin scar. 
Ok, you can close your mouth and take a deep breath now. 
Now here is the breakdown for you.

They are removing the intestine sections because of where the primary is located it is filtering the cancer cells in high amounts through everything that is directly near it. 

The lympnodies are going because those are the primary filters of the cancer cells. Will be sent off for testing. 

I wasn’t really using my gallbladder anyway and besides, the injections that I do monthly cause gallstones. So its removal is to avoid more mumbo jumbo. 

My liver is going to go through debulking of tumors as long as my body will allow the doctor to debulk. With the removing of these tumors I can go into carcinoid crisis and my heart can give out so they have to remove them very cautiously. If I go into crisis they will stop and the remaining tumors will have direct chemo therapy applied with a cotton swab. All the removed tumors will be sent off for testing. 

Every 2 out of 100 patients have issues after the surgery with drainage. In the event that this happens they would either go back in and repair or insert a drainage tube until leakage stops. 

I will be in ICU for 2 days, the hospital for 5-6 days and then staying in the American Cancer Hope Lodge until I can go home. The surgery is scheduled for November 20th. I have pre-op November 19th. I will be in New Orleans November 18th – December 4th. For the most part we have figured out who will be helping Chris with the boys for those 2 weeks and still finalizing who is going with me as care givers. Still need someone to be there for the initial surgery; Nov 19th – 26th. (Either 1 person all days or multiple people covering the days).

I don’t know what could be more fun; this surgery or a trip to Disney. Such a close call. 

Everything will come together if it is God’s will. But praying that a money tree grows in our living room over night can’t really hurt.

Or can it………….

 
  

Results are in……

Sorry it has been a month since I last posted. We got a little busy with life. 

  
Been taking everything one day at a time.  Some days are just an hour at a time. But I’m still alive. Hooray!

The episodes are back. They aren’t causing any visable signs but I sure the heck can feel them. It was easier to explain when you could see me turn red. I was advised to use the octreotide self injections at home as rescue shots when the episodes get to be really bad. I’m pretty stubborn and I like to hear myself talk so, thus far I have just complained instead of injecting. 

Don’t currently have anything on the calendar. Should have another MRi in the near future and then figuring out when they are going to do another round of the Y90 procedure. Pure joy. Going to ask for a port that time around since my good vein is now all scar tissue and can’t be used anymore. 

On a positive note………..

I did get the results from my follow up MRI. The left side that was treated with the radiation seeds has halted. Nothing has gotten any larger and Bubba is turning black in the center and around the edges.  This is good. Could take a year for the entire thing to turn black but at least it’s not growing. The fistula is also turning black and dying off. If it continues to do so then after the next MRI we will be able to discuss going into the right side with the radiation seeds. Woot woot! This is as positive as news gets with Carcinoid Cancer. 

I’m also up to 115pounds. Actually had a pair of shorts that didn’t fit; I was ecstatic over this. Only woman in the world excited about gaining 11 pounds. 

(Not ment to be depressing)………….I have completely excepted the fact that this is going to be what kills me and most likely in my 40’s or early 50’s. Seems like most of the time it’s from the heart giving out during procedures from the seratonin and hormone release from the carcinoid episodes. It’s crazy and I’m ok with it. I would prefer some freak accident like my blender got pissed off, jumped off the counter and ate my face but, heart stop under anesthesia is probably a lot less painful. 

Hey Hey it’s another Day

Feeling frozen in place. I keep thinking “I should do this” or “I should start this.” “I need to schedule this.” “I should be involved with this.” And then a week has past. Really hard to get motivated into doing anything other then sit on my butt. 

Oncologist didn’t really have anything to say. Said I looked good, I called her a lier. Blood preasure was 67/88 which was freaky. She started me on this med called Croen. It’s to help my pancreas keep on, keep on, keep on moving. Still on omeprazole also to avoid looking 8 months prego. Did my monthly Lanreotide shot while there.  Then I rubbed my butt for the next hour. 

I have my first scan after radiation seedlings on June 1st and then a radiation oncologist appointment June 2nd. Will totally make a post after the scan 411. Praying something awesome is going on and that they have decided on the next move. Think my arms are about ready to endure some needles.