Declining the membership was NOT optional!

[MRMRSU]

My husband Andy and I have been visiting this site for several months since he became a member of that elusive CANCER CLUB with his diagnosis on 02/13/07. My membership as a supporter is a peripheral kind, but one that I have been unexpectedly thrust into nonetheless. This forum has been an incredible source of information for us, and we humbly join you in unity and support. Like all of you, we did not have the opportunity to decline the membership, so here we are. For Andy, I'll plan on renewing as long as it takes!

We've finally mustered up the courage to share our story - partly for our own therapeutic gain knowing that we are in the company of others who have been through it or going through it - but mostly for information exchange so that we can be pillars of support for one another.

I would very much appreciate hearing from anyone who developed the rare and unfortunate condition CHYLOUS ASCITES. Andy had RPLND on 04/27/07, and had to be re-opened on 05/03/07 just a couple of days after being discharged. They drained FOUR LITERS of fluid that had collected in his abdomen! They inserted two JP drains in his stomach on either side of the incision to monitor the fluid output from the lymphatic leakage. For the first four weeks, he was draining about 1.5 L to 2.0 L per day! He has been recovering at home without solid foods for 9 weeks, getting his nutrients in the form of TPN through an IV for a 12-hour period every night. It is a strict no-fat regimen. Is there anyone out there who has gone through something similar?

[dadmo]

Scott will certainly jump on this one. He had a real struggle with this. He had a thread started on this but our system crashed and the thread was lost. All I can tell you is it wasn't an easy time. If your husband is still having problems get him on a no fat diet. It will reduce the amout of work the lymphatic system does and give the cut areas a better chance to heal.

[Scott]

Wow, is that a familiar story! Yes, I dealt with chylous ascites for over three months after my L-RPLND on 6/24/2005. I wish that thread was still here. First I had over four liters drained and was admitted to the hospital and started on TPN and octreotide. Eventually, I was discharged to go home and self-administer TPN and octreotide injections. A persistent drain was left in, but the volume of fluid drained just didn't decrease. I ended up back in the hospital with a bad blood infection. After that, the drain was removed to make sure the fluid pressure stayed high enough to help me heal, and I went to the hospital to have fluid drained once a week. I was really concerned about that, but it worked. We stopped TPN at that point, and I was allowed a very-low-fat diet with medium-chain triglyceride supplementation.

After two more drainings (the second, about six liters), the fluid suddenly stopped collecting, right around the end of September. Good thing, too, because I wasn't about to miss my commitment to the Ride for the Roses in October!

I can go on and on, but the important thing to know is that I suffered through it, got better, and am doing great. I believe Andy will be able to say the same soon.

[Already Bald]

Wow, is that a familiar story! Yes, I dealt with chylous ascites for over three months after my L-RPLND on 6/24/2005. I wish that thread was still here. First I had over four liters drained and was admitted to the hospital and started on TPN and octreotide. Eventually, I was discharged to go home and self-administer TPN and octreotide injections. A persistent drain was left in, but the volume of fluid drained just didn't decrease. I ended up back in the hospital with a bad blood infection. After that, the drain was removed to make sure the fluid pressure stayed high enough to help me heal, and I went to the hospital to have fluid drained once a week. I was really concerned about that, but it worked. We stopped TPN at that point, and I was allowed a very-low-fat diet with medium-chain triglyceride supplementation.

After two more drainings (the second, about six liters), the fluid suddenly stopped collecting, right around the end of September. Good thing, too, because I wasn't about to miss my commitment to the Ride for the Roses in October!

I can go on and on, but the important thing to know is that I suffered through it, got better, and am doing great. I believe Andy will be able to say the same soon.

Scott,
I never knew you had sucha tough run post RPLND.
Your story should give MRMRSU some encouragement, You can and will get through this thing
Hang in there.

[Margaret]

Welcome Andy and Maria. That sounds like a horrible experience and I am sorry his RPLND ended up with complications. I knew about Scott's trouble and even now hearing of it makes me cringe.

I am not sure if it is related or not, but I freak when I see RPLND candidates eating and drinking so soon post surgery. Or when I hear people tell me that their doctor did not make them eat a NO fat diet post surgery because I have read all these terrible stories. Of course that being said I am sure there are people out there that did not eat or drink for 6 days and they ate a no fat diet and STILL had troubles. But I hope the doctors out there are helping people be giving them the strict instructions up front so they know the dangers.

Was your husband placed on a zero fat diet post surgery?

I wish you all much healing....please let me know if there is anything we can do to help.

Hugs,

M.

[MRMRSU]

Thank you for the encouragement!

What a great group of people you are! Thank you for the words of encouragement for Andy...

After his diagnosis, we read everything we could find on testicular cancer. It was so very overwhelming and mind-boggling. He wasn't a smoker, he wasn't a drinker; he ate healthy, he ran every other day. He took great pride in working full-time as an officer for the Sheriff's Department (and kudos to the Orange County Sheriffs Department by the way, who have been so very supportive of their brother). And he was equally proud of being halfway through law school. Yet, with all of the various websites we visited and all the doctors we consulted with (Norris Cancer Center, Hoag Cancer Center, etc.), I can honestly say that we knew nothing about going on a NO-FAT regimen after RPLND surgery. I am consumed by guilt about not knowing this, but perhaps I can make it right somehow by spreading the word to other guys about to undergo RPLND.

Scott: Fantastic picture of you in the new LIVESTRONG newsletter...SPOT ON with all of your hard work - you're the only survivor we've crossed paths with who has been through what we're dealing with right now. You're right that CHYLOUS ASCITES is not fun! How long did you stay on a NO-FAT diet after they took you off the TPN? They're also giving Andy octreotide (a.k.a "sandostatin" injections)...a home nurse comes every Monday to flush his pic line, do bloodwork, liver function tests, etc. I play "nurse" myself after work to prep and hook up Andy to his TPN in the evenings. We've been pretty good about keeping the drains clean at the entrance sites where the tubes go into his stomach to avoid infections...they've been as big a thorn on Andy's side (pun slightly intended) as the TPN. Anyway, I hope you don't mind the questions and I'd love to know about your course of action after they stopped the TPN. Andy can't wait to end his evening rendezvous with that milky IV bag!

Margaret: I've had people say that illness is sometimes harder on the spouse...did you ever have people saying that to you? I never know how to respond to that statement...it's just tougher for us in a different way. As difficult as it is during those bad days when you feel like you've run out of energy or sympathy or consoling words, I would never even begin to equate that what I'm going through is harder than what my husband's going through. But one thing I do know is that love and support can help the healing process and I have such a profound respect for those who stand by their spouse, who live up to their wedding vows. Thank you for your encouragement and I hope you and your husband Boyce are well and in good spirits!

[Scott]

How long did you stay on a NO-FAT diet after they took you off the TPN? They're also giving Andy octreotide (a.k.a "sandostatin" injections)...a home nurse comes every Monday to flush his pic line, do bloodwork, liver function tests, etc. I play "nurse" myself after work to prep and hook up Andy to his TPN in the evenings. We've been pretty good about keeping the drains clean at the entrance sites where the tubes go into his stomach to avoid infections...they've been as big a thorn on Andy's side (pun slightly intended) as the TPN. Anyway, I hope you don't mind the questions and I'd love to know about your course of action after they stopped the TPN. Andy can't wait to end his evening rendezvous with that milky IV bag!

Eerie, it's like watching somebody else play me in a movie. Does Andy find himself having strange food cravings or choosing to read restaurant menus as if they were magazines? I did. I was on TPN for about seven weeks, and I stayed on a close-to-zero-fat diet and kept up the octreotide/sandostatin injections for about six weeks after I had the drain removed and stopped the TPN.

For me, the big thing that finally seemed to make the difference was taking out the persistent drain. I was too dependent on it to let up the pressure, and the internal pressure needed to build up. How is Andy using the drains?

We did talk about the possibility of repair surgery, and it was suggested that I go to Sloan if that became necessary. Fortunately, it didn't come to that.

I only found one other person during my ordeal who had dealt with chylous ascites to the same degree before me. My story turned out to be almost exactly like his: same troubles, same final resolution. Our bodies healed, and the fluid collection stopped, but it took three to four months.

Hang in there, and I'm happy to talk here in the forums (which I prefer whenever someone else might learn from the conversation) or by e-mail or phone.

[Margaret]

Hi Maria...I am just sorry for anyone who has to battle this monster. I think the difficult part for care givers is the mix of emotions. I felt guilty that he was sick and I was well...and at the same time I was doing all the work, driving him to and from, taking care of our son alone, and trying to do my best at my job when really I just needed to be at home taking care of him. I was juggling so much. Not many people in our world of family and friends really understood how much I was carrying. They would ask about Boyce and tell me what a trooper he was....which by the way he was amazing!!!..and not many people understood the burden I was carrying. Crying alone in my closet was the easiest place for me to hide . But I am sure if Boyce reads this...that will be the first time he would have heard that. But I know now that we are a strong team, and he would have done the same for me or more if the tables had been turned.

I am here for you and I encourage you to call me anytime if you need a friend or support.

Margaret
919-215-9464

[Scott]

As difficult as it is during those bad days when you feel like you've run out of energy or sympathy or consoling words, I would never even begin to equate that what I'm going through is harder than what my husband's going through.

While it may not be right to equate it, the effect of cancer on family members and caregivers is serious. You're cancer survivors, too.

[Karen]

Maria,
Welcome to the forum...sorry to have to be here and all Andy is dealng with. We're here for you both.

[Fed]

I've had people say that illness is sometimes harder on the spouse.

I think the difficult part for care givers is the mix of emotions.

Couldn't be more right about that. The impact this has on caregivers is huge. After I was back to normal, I made sure I did something nice for my wife... she had to endure with all the chores, her work, a then hyper 1 1/2-year old, and me to boot. I did feel somewhat helpless during recovery, and now I am more mindful of what wives, mothers, and siblings do for us while on this journey. Maria, stay strong for Andy and for yourself.

[MRMRSU]

"You hold the umbrella, I'll hold you." One of my favorite phrases...something I've been saying to Andy a lot. Can't wait for the sunshine at the end of this heavy downpour we've been going through. Thanks again for all the support.

Scott, I too encourage our dialog through the site because I do feel that perhaps in our conversations, that someone else might take away that one little tidbit of info that may be beneficial. The 4-hour laparotomy Andy had after his 6-hour RPLND was the tougher of the two surgeries. A couple of days after he was discharged from the hospital after the RPLND, he had gained 25 lbs. I could see that his waistline had widened significantly from the fluid collection...these small yellow sacs started to form around his stomach and sides. We saw our urologist that day and he was on the operating table later that afternoon. They injected him with a blue dye that was supposed to help the surgeons locate the leakage(s) but the lymphatics didn't absorb as much of the dye as the doctors wanted. It ended up in his urinary system...the week we were in the hospital, the catheter (foley) bag was a bright blue. The nurses kept teasing that he was part SMURF! The first week that he was on TPN, he started having dreams about food - chips & salsa one night, chow mein the next! Lately, he's been watching the Food Network (although he doesn't cook). I asked him why he was torturing himself by doing that, he said it was actually giving him comfort, so how do I argue with that?!! For a little while, he was making a list of our favorite restaurants that he wanted us to go to right after they stop the TPN...but I think he's slowly coming to the realization that solid foods will have to be pretty bland those weeks or months after he finally gets to eat. Are you still mindful of eating a low-fat diet even now? Or do you get to indulge every now and then? Scott, refresh me...did your doctors actually have you on a NO-FAT diet BEFORE you developed chylous ascites?

Fed, Andy's told me numerous times too that he feels helpless and guilty about all this. He actually apologized (half-kidding, of course because he's quite the clown) for having a defective body! The ironic thing is (and I really mean this), my husband has never looked so handsome to me as he has these past few months. How did your wife keep up her energy amid everything on her plate?

Margaret, in my car as I pulled into the garage was my crying spot...but I'd always wipe away my tears before I came into the house to greet Andy. It was never tears of pity though...usually just exhaustion and a way to release. We have honestly never felt sorry for ourselves about this diagnosis, and our attitude going in to all our appointments and our surgeries had a lot to do with reading posts on this site...it was humbling to hear stories about teens, 20-year olds, 30-somethings and 40-somethings going through the same thing if not more serious. Laughter has always been a good release for us. It was right around Valentine's day when we got the news - and of all the cards I chose from Hallmark the weekend before we found out, it was a multi-fold greeting card with cute little cartoon squirrels with a poem entitled "MY NUTTY VALENTINE" - can you believe it?!! We howled about it for days!

[Scott]

The first week that he was on TPN, he started having dreams about food - chips & salsa one night, chow mein the next! Lately, he's been watching the Food Network (although he doesn't cook). I asked him why he was torturing himself by doing that, he said it was actually giving him comfort, so how do I argue with that?!! For a little while, he was making a list of our favorite restaurants that he wanted us to go to right after they stop the TPN...but I think he's slowly coming to the realization that solid foods will have to be pretty bland those weeks or months after he finally gets to eat. Are you still mindful of eating a low-fat diet even now? Or do you get to indulge every now and then? Scott, refresh me...did your doctors actually have you on a NO-FAT diet BEFORE you developed chylous ascites?

I actually believed my normal diet was low-fat. I don't think I was told strongly enough that it mattered, and I believe I started eating again too soon after surgery. I'll never know if things could have been different.

I'm right there with Andy on the dreams (I especially remember dreaming about doughnuts and potato salad), food shows, and restaurant fantasies! They helped me make it.

As for whether I indulge now: you bet I do -- often and without remorse!

[MRMRSU]

I actually believed my normal diet was low-fat. I don't think I was told strongly enough that it mattered, and I believe I started eating again too soon after surgery. I'll never know if things could have been different.

I'm right there with Andy on the dreams (I especially remember dreaming about doughnuts and potato salad), food shows, and restaurant fantasies! They helped me make it.

As for whether I indulge now: you bet I do -- often and without remorse!

Thanks Scott! You're a gem. That last line will be all the encouragement Andy needs.

[sldl1106]

Maria -

I'm sorry to hear that Andrew had complications w. the ascites that had him back in for surgery. I hope recovery goes more easily from now on.

Scott -

I'm also sorry you went through the same! How long after the problems did you continue with the low-low-fat diet?

I'm glad you are communicating all of this here - just last night I read someone's older post about the low-fat post-RPLND diet, and mentioned it to Rob today. I was literally just about to post to ask if anyone knew if there is a benefit in starting a low-fat diet PRE-RPLND, and then I saw this thread. We'll be discussing the RPLND on the 19th w. Dr. Sheinfeld, but I thought if there was a way to get Rob healthier before the surgery, diet-wise, I would do it. Right now, we pretty much eat whatever. The steriods have turned him into an eating machine.

Margaret and Maria -

It is a relief to read what you both wrote. I cry at the strangest times!! We went to see "Knocked Up" last weekend (our first "date" since February) and everyone was laughing at the end, but I was crying. And I agree, the tears are not of pity. It's frustration, fear, exhaustion (I have a four year old who seems like twins at times), and then I feel better. Luckily, our sense of humor is helping us through as well.