Manapart and Surgery

I hope Rod doesn't mind me speaking for him but I'll give you a bit of an update. He walked the first day! The surgeon hasn't been in yet to give him results. He's in a lot of pain and having severe nausea and vomiting and has a lung infection. That's about all I know. But he did it and I'm happy for him. The worst is over.

Jan

It is taking all of my energy and strength just to sit up and type this. The amount of pain im experiencing right now 12 days out is concerning. But there is some good news I think I can share. Or 80% as my oncologist would say. I have a rare tumor disease called Rosai-Dorfman. It is said to be bening. All of them. The two pancreatic lesions, the huge mass on my colon, and the suspicious lymph nodes. I was told right before they discharged me they wanted to publish my case in literature as I am the only knows person to ever have this condition in seperate areas. Waking up to this news was a mountain off my back. But that feeling of victory was short lived as I had to fight for my life my entire 10 days there. 

I dont know what caused all the complications. Partly the p*ss poor staff, the woefully inadequate pain control regiment. The infection and high fever was horrible. I remember them constantly bringing me ice packs and had my room at 70 degrees and i was still burning up. As for the surgery. As I sit here now im not certain I made the right decision. I think the decision to do surgery on a benign consition was solely cos it was extraordinarily rare. I woke up in ICU vomiting stomach acid. That was probably the easiest time i had there cos the epidural had yet to wear off. Took 8 hours to get me a room once i was stable. It went downhill from there. I did keep my promise. I got up and walked. My insides feel like yarn and rubberbands. The more I try to stand up straight it feels like the knots get tighter. I had to be on a breathing machine, i literally could not breathe on my own. My only visitor the enitre stay was my mom on mothers day. For her present, against protocol and common sense, i stood up to hug her. 

I was orginally put on a tylenol drip, then after be insisting i was put on hydromophine pcap pump for 12 hours, then after than oxycodone pills for 2 days. Then tramadol from then on. NONE of it helped. lol. The pcap maybe but i was unconscious half the time to keep pushing the button every 10 mins.  I was told cos of the new laws they couldnt increase. My illeus lasted maybe 4 days but as I was told, everything from my diabetes, to gastroparesis, to IBS would get worse, in some cases maybe permenantly. That unfortunately has become true. From one to ten my pain level has been from 7 to 9. 7 is a good day but unacceptable. lol. 

The day they pulled my jp tube was a horror show. First off it hurt like hell. I felt it up my chest and left shoulder. And when they took it out it gushed. Which surprised them cos there wasnt much being despensed in the bulb. They held it and dressed it. That lasted about 3 mins. I was soaking. I was in a chair at the time and they told me to get in bed to have a better angle. When I stood up, lets jus say i probably have a idea how a preganant woman feels when her water breaks. It was just constantly dripping. I was getting dizzy. Half the floor was red. I sat back down. Finally they got me back in bed, the only time there was a sense of urgency or panic felt by everyone. If i wasnt in so much pain i would have laughed at this huge ball of gauze and bandage on my stomach. lol. 

I remember one of the doctors coming into my room making the early rounds. I did not sleep all night, the pain had started to break me down. My dignity, my strength, my will to fight. I asked him what would you do if you were me right now and your at a 9 or 10. Like yoru whole body set on fire and there is no relief. What would you do if i was your wife, daughter, or son.. laying here, in tears, begging for help. I undestand I just had major open abdominal surgery. They removed a lot. I was not naive to being in pain. But i never expected this much on top of a fever and infection. I remember a story JanJan shared with me the day before my surgery about how she was mistreated. I appreciate her sharing it but it was upsetting. I could not help but to feel the same. As the doctor just said, "hang in there, we will get you some more tylenol, you worry about getting up, getting active and walking and eating more and maybe we might give you something stronger."

This has and continues to be quite the experience. They still dont know what treatment if any i will need going forward. My white blood cell count is still high. My pain level is ridiculous. Its been 12 days and i feel like im getting worse. My fever is gone and im on antibiotics. 

The last 3 months of my life have been the most challenging ever. But because of the support I found here and from a extraordinary person i met off site, i would not have made it. I know my post right now is speaking from a point of view of pain and anguish cos its all I feel right now. Even my oncologist said he did not know if I even needed surgery. That was infuriatrating. I cant shake the feeling that I may have made a mistake doing surgery and should have gotten a 3rd and 4th opinion. But I am thankful that when I did wake up, I was not told the worse of the worse. Things I was erroneously told for 3 months, that i only had 8 months, that i had pan cancer and colon mets and possible lymphoma. So despite all the pain im going through right now ill try to keep reminding myself of all of that and focus on regaining the life I had before and rebuilding myself to be a better person and live a more meaningful life. 

Thank you all

Rod

I'm not sure if I should feel bad for urging you to get the surgery. But at this point I think they'd have continued to tell you that you had little time left and you'd have lived with that knowledge which would have been horrible. And, benign or not it's likely good that they got that out of there because it was painful. That being said, I feel bad because I was trying so hard to make you not so scared of the surgery and downplaying how it would be after and now it turns out that it was worse. Yikes!

My hope is that once you do heal and it's all over you're glad you did it. 

Jan

manapart said:

you should feel great...

that you gave a stranger like me the courage and strength to not only make it to the surgery date but get through it. I understand the doctors were dealing with something rare which is why i got so many confusing and inconsistent diagnoses. My primary oncologist just said forget it, ill see what we are dealing with when im in there. They were growing but even he said he didnt know if surgery was necessary. Im doing my best to not think about it much as theres not much to even google about this condition so I understand in a sense but.... ugh. It could have been way worse so I take this as a win. 

Thank you for everything Jan. 

You are so welcome Rod! I'm so glad I could help a little bit.

Jan

Absolutely amazing news. when you have healed from surgery I am sure you will feel alot better. You have been blessed. Life has given you a 2nd chance. use it well. very happy for you. enjoy.