Lost my sense of humor-Bleo Tox

[Russell's Mom]

Russell finished 4 rounds BEP, now with residual masses (teratoma?) in the abdomen and lung. The bigger problem, he now has Bleomycin Toxicity. He has already lost pulmonary function and has been put on high dose Prednisone, "6 months to a year". He has been coughing blood for about a week and is needing the RPND. We will meet with the Second Opinion People on Wednesday and the Dr. Ryan who works with Peter Carol at UCSF on Thursday. If the toboggon goes down, it builds momentum to go back up, doesn't it?!?!??? Russell's Mom Sharon

[dadmo]

Sharon:
I understand how frightning the upcomming operations are but you have evry reason to expect a good outcome. It's going to be tough but it's important to take that last step. Is there a chance Russell can go onto surveillance?

[Russell's Mom]

bleo-tox

Hi Dadmo,
Thank-you for the support. The road is getting lonely! As the options narrow, the conversations get less. Interesting!? This week we will meet with both sets of doctors. The pros and cons will have been flea combed and the decisons should be finalized. My understanding is that the teratoma concern takes a pretty high priority. The Bleo tox is concerning me the most. As a nurse, I can understand the surgery, but the toxicity issue is like a dark alley. It "is" very scarry. Please hang on with me!!!! Sharon

[jesse111555]

i hope everything turns out good for you sharon best of luck with Russel's operations

[TOP]

Russel's mom,
Hang in there , it gets better, just can take some time. God Bless, Tim

[dadmo]

Sharon:
Both my wife and are are here for you if you want call collect. 201-445-2532. My wife can use some chat time too.

[Russell's Mom]

mountain meadow

Thank-you!,
Have you ever been in the mountains and find that the trail leads to a small mountain meadow? Today is a mountain meadow day! I'm grateful for the opportunity to re-fuel! It is a more comfortable day, but there is much to do. I will keep in touch as we go. Take care, Sharon

[Russell's Mom]

Starting up hill again

Greetings,
Russell will have surgery on Dec 11. I am glad that I pushed ahead with the UCSF doctors. Because of the lung concern, there will only be abdominal surgery and they will watch the residual activity in the lung. Possilbe return to surgery in 4-6 weeks if there is a change. He may end up in ICU because of the lung involvement, but the doctors gave a very confident picture of the plan. Russell is ready. Russell's quote, "the view will be nice from the top!" He/we realize that mountains come in ranges, that there will be more mountains to climb, but the efforts offer opportunites unavailable through usual means. Take care, will keep in touch, Russell's mom, Sharon

[dadmo]

Good luck with the treatment.

[Russell's Mom]

Update

More difficult than a race!! We ended up pushing the surgery (RPLND) back a month. The final opinion came from Dr. Einhorn. Trying to let the lungs heal, which now seems to be as threatening as the original cancer. Waiting for lungs to heal, wondering if the cancer is growing again. (And the lung issue will be a lifetime.) This is defininitely out of the boat and into the whitewater!! Still breathing however!! Also ended up with a couple of extra days at the hospital.......fist into wall with broken bones!! Thought we were heading for the OR, but the final decison is cast only. Russell was just thinking of seeing if he could find a few days of work, his checking has run dry, but now is unable. The RPLND and thoracotomy delay, pushes any kind of normal back even farther. I am trying to find strength, but am also concerned about any further emotional release that might be in front of us. The mis-diagnosis does not create a good starting point!!! Most people are kind about understanding the occasional frustration releases, (not to mention what the high dose steroids are doing to his body and his brain) but others come through with some pretty low statements. Still there are yellow bands that remind us to keep turning toward a different direction.
If anyone has any ideas of how to deal with the frustration, please share. I know that it will be Russell's work in the end, but hopefully some ideas will surface that will help find a direction. Also, any ideas to create an income that is outside of the normal work week would be appreciated. In actuality, I think we are dealing with some grief/depression, but I'm trying to look at all of the possibilities. Any ideas...thoughts...appreciated!
Thanks for the previous encouragements, thank-you for being there. Russell's Mom, Sharon

[petep]

hi russ's mom...sharon,

just finished reading thru your thread...and I can hear the frustration in your posts...very understandable.

My sense was it was much harder for the people around me than for me...at least going thru it, I felt I was doing something. They could only watch.

I think back, when I'd be trying to do "laps" in the hospital...sucking wind trying to make it around the hospital floor one time...no hair, ghost white, skinny...and i'd see hospital visitors see me and you could see in their eyes "boy this guy looks pretty bad..." But in fact, I was glad to just be there...I'd always see someone else and think "boy, I'm lucky to be fighting."

The frustration you feel comes from that sense of having no control over the situation...but you are doing everything you can do...education, good docs, etc...be satisfied with that...as soon as you accept there is an element you can not control, you will find some peace.

Why is your son and your family having to experience this physically and emotionally draining situation?...who knows...no answer....but you are where you are and take everything one day at a time - you can really spend some great time...quality time...with your son now....savor that....

I know when I look back, I think my wife and I had some of our best moments ever...just spending time together....not the best way to avoid work...but a very meaningful time...Take advantage of it.

Keep us posted...be strong...cry sometimes if you feel like it, nothing wrong with that...know that we are all thinking of you and your family.

[Hopeful]

Hi.

I can understand the thoughts with the bleo tox all too well. But it does get better and the lungs will heal.

I don't know if this is possible but could your son take oral chemo VP-16 while waiting for the lungs to heal? It's a low dose of etopiside chemo with minimal side effects. I don't know if it's possible. But i would think Dr. E would have mentioned it. Dr. E knows what he is doing.

I know the feeling of sitting around and waiting to get a procedure but not being on chemo or anything else to stem the cancer. But hang in there, it does get better.

Patti

[dadmo]

Sharon:
Does your son have any interests or hobbies? Perhaps he could exploit these on eBay. My wife and I have a rather extensive garden and when our son became sick and we were unsure about money issues we sold several thousand dollars in plants from our yard.

[Russell's Mom]

Hello after the holdaze

Hope the holidays were happy and healthy as they could be. I'm tired, but still going strong!!! A little hibernation should help to regenerate for the next steps. Russell is still on the high dose steroids. At last a positive side affect. It looks like Russell is dealing with the adverse affect of "hair growth" from the steroids. I have to admit that it was quite difficult knowing what some of the side affects could have been, considering the body changes that he had just endured while on chemo. He is talking dreds now!! Just kidding! There is hair growing in places he has never had had before....quite the contrast! He still coughs with the pneumonitis, but has had improved pulmonary function tests and improved chest CT. Worthy of the biggest smile, the residual lung lesion has almost disappeared. He may be spared the thoracomy. It is difficult for me to see how they would do a thoracomy with the oxygen restriction necessary for the Bleo Tox!! The node dissection is now scheduled for Jan 29th. The bleo tox remains the mystery. We will see the pulmonologist on the 10th, then pray that the pneumonitis continues to decrease. Will leave it at that!! For now, Russell is enjoying his regained strength. We had a warm and caring holiday!! Thanks to all for being there. Russell's Mom, Sharon

[Lori]

So glad to hear all is going well!