Doing Disney with Stage 4 Cancer

[Redwolf8812]

MDMommy - So happy for you! I continue to pray daily for miraculous healings for all of us.

Patsmom - Sounds like you had a great time. I used to get out of the wheelchair to stretch my legs and let the kids ride it. They were 15 and 8 at the time and would actually fight over it! I didn't get any weird looks though, probably because I had the "benefit" of "looking sick" with my turban for my bald head and a cane to help me walk.

- Penny

 

[PatsMom]

MDMommy - So happy for you! I continue to pray daily for miraculous healings for all of us.

Patsmom - Sounds like you had a great time. I used to get out of the wheelchair to stretch my legs and let the kids ride it. They were 15 and 8 at the time and would actually fight over it! I didn't get any weird looks though, probably because I had the "benefit" of "looking sick" with my turban for my bald head and a cane to help me walk.

- Penny

I think I got fewer "looks" on the day I was wearing my Cancer Sucks T shirt! When we go in May I will be wearing a headscarf since my hair will be long gone by then. I suppose that will help. I just keep remembering what my mother always told me - you'll never see these people again so who cares what they think!

I also continue to pray for miracles for all of us. I am doing the Relay for Life again this spring - my little gesture of help to find a cure. I don't know how much walking I'll do but I will be supporting the team in fundraising.

 

[lmc318]

MDMommy, woohoo!!!! Congrats and good vibes for continued good results!

Pats mom - I'm glad you had a good trip ! I agree it's easier said than done to ignore people's looks. Shame we feel we need to show our pain or need to others so they will be more accepting. People should be more tolerant, but of course it's hard for all of us. Hope work is going well.

 

[stargazertechie]

Oh, thank you! I know, I should feel ok about it and revel in the fact that I can go at all. I still don't like the idea. I'm VERY independent and head strong. But I won't ruin the trip out of stubbornness, so if needed, I'll rent one.

That's a great attitude to have! My father was a 5 year cancer fighter, dx with Stage IV esophageal cancer in 2007. He was terminal, end stage when we went in November 2011. It was honestly the BEST week he had from August 2011 through his death in April 2012.

At the time of our trip, he had been receiving chemotherapy for 47 weeks straight and had 30 or so radiation treatments scattered in there as well. On the good days he was out in his wood studio working with heavy machinery. On the bad days he had to crawl down the hallway to his bed, and mom and I had to lift him into it

He was reluctant to rent a scooter. He didn't want to look "disabled". I knew he'd embrace it eventually, so I rented one behind his back

I also had a wonderful person on the DISign board make a license plate for the front that said "Lou's Ride" and for the back that said "Cancer Can't Stop Me" because on his good days, he LOOKED normal and I wanted to avoid "those comments".

Since we were going for the Christmas celebrations, I bought a few cheap things of garland from Wal-Mart, along with battery operated lights. I just looked through *all* of my photos and realized I didn't get a good picture of his wheels at night. Though here it is during the day

Good luck to all of you in your cancer journeys, and I hope that you all achieve a lifelong remission and have many good years ahead with your families, friends, and loved ones! If anyone has any specific questions on doing Disney while wrecked from treatment , I'd be happy to share what we learned!

 

[dizprincess27]

Thank you for the welcome Redwolf8812 and you are so right about it being no walk in the park but we can only take it day by day I will check back and provide any updates but now it's just delay after delay due to white blood cells and platelets being low but I'm so grateful my CA125 is way down so I'll take it

Patsmom you are truly an inspiration because I had so many issues with my hysterectomy I could barely make it out of the house let alone go to disney so let the haters hate or stare but you made it through a memory making trip and that's the important thing

 

[rewardsinlife]

Wonderful idea! Love this thread!

I have a question..perhaps a little in advance but not too much. Had ultrasound and CT found cysts as well as 2 large masses in my pelvis area.already been told high likelihood of cancer with need for major surgery to remove it. Waiting on insurance to clear before surgery and still don't know stage and other treatment til, surgery and biopsy is done. Anyway..I love DL and have a pass that ends in May. I was wondering what the recovery time would be like in waiting to go back after the surgery has taken place? Obviously...lap bars and seat belted rides are no doubt going to be painful as that is where the incension site is. Anyone have any ideas? ( I know some I will have to avoid for a while because of jerking like Indiana, space mountain, mattahorn, maters tow..). Any ideas welcome

 

[Redwolf8812]

Hey rewards! I had both a hysterectomy and mastectomy at the same time back in January of 2011. The recovery was about 6 weeks and wasn't too bad. The most annoying thing were the "drains", these tubes that they leave inserted in the incision to drain the mucus/blood from the inside (I know, gross, right?). I'm not sure how my surgery compares to yours but maybe someone else will have more info for you. Keep us posted!

- Penny

 

[PatsMom]

Wonderful idea! Love this thread!

I have a question..perhaps a little in advance but not too much. Had ultrasound and CT found cysts as well as 2 large masses in my pelvis area.already been told high likelihood of cancer with need for major surgery to remove it. Waiting on insurance to clear before surgery and still don't know stage and other treatment til, surgery and biopsy is done. Anyway..I love DL and have a pass that ends in May. I was wondering what the recovery time would be like in waiting to go back after the surgery has taken place? Obviously...lap bars and seat belted rides are no doubt going to be painful as that is where the incension site is. Anyone have any ideas? ( I know some I will have to avoid for a while because of jerking like Indiana, space mountain, mattahorn, maters tow..). Any ideas welcome

I went to WDW 10 days after a total abdominal hysterectomy. I took it easy and used a wheelchair off and on. I also did not do any of the rides that jerk you around or the coasters. Regular lap belts were no problem. You'll be wearing a seat belt when you are in a car so it isn't any different.

I am four weeks out and my incision is slowly healing. Most don't take nearly as long as mine. I am diabetic so the combination of diabetes and cancer combine to really slow healing for me. I am waiting to start chemo until my incision heals.

Talk to the doctor who does your surgery. Mine was fine with me flying (short 3 hour flight) and doing Disney. But others might have other ideas. Good luck with your surgery. And then the waiting. Waiting for tests, for surgery, and for biopsy results - to me they are all more stressful than dealing with the results.

 

[rewardsinlife]

@Redwold8812 and @PatsMom thank you so much! I am getting referred right now to gynocologist after an MRI ...they want to see in even more detail I guess. I will keep you all updated..thanks again for the tips and support!

 

[lmc318]

Hi all! Just wanted to pop in and say hi. I'm in week 2 of treatment 2 of my last round of chemo before I get to take a break, assuming all is still at least the same when I'm done. Right now I feel like crap. The second week is always the worst, and the nausea and stomach upset has hit me extra hard this time. Still not as bad as when I was on the cisplatin, but it's not fun either. Feb 18 will be the last treatment and the CT will be March 8. We're then headed to WDW on the 12th, so it had better be a good scan!!!

My hair is falling out again. I'm not sure why. I had a little growth spurt in December and had almost an inch on top, but then all the dark hair started falling out again and I'm left with white hair that is sparse. Still hoping for a Disney miracle, but I ordered a hat and have my wig just in case. I really hate wearing the wig and the thought of it all day in Florida is not appealing. I know people say go with a scarf or a hat, but I'm just not comfortable with that. I want to go to Disney and feel normal, not that people are staring at my head. Well, we'll see what happens. I'll keep everyone posted.

rewardsinlife - hope everything is going well with the new gyn. Keep us posted.

to all.

 

[Redwolf8812]

Sorry you're not feeling so hot, Lisa. At least you should be feeling much better for the trip. I've done Disney with and w/o wigs. My favorite was a scarf with a white, wide-brimmed hat on top of it. The scarf hid my bald head and the hat kept the sun off my face. The wig was too itchy and I just couldn't enjoy myself. You mentioned you want to be "normal" in Disney. You'd be surprised at how many people with disabilities go there. No one even blinks an eye. I say go for comfort.

I get my first post-liver ablation scan tomorrow. I've also been waiting @ 1 month for my oncologist to get my insurance company to approve my next round of chemo. Very frustrating and a little scary being off treatment this long, although I'm enjoying how good I feel.

- Penny

 

[Redwolf8812]

Today's MRI showed that the big tumor in the liver looks all cooked up (from the ablation on 12/31/12). So ablation obviously works, thank The Lord. But there are two tiny new ones that weren't there 6 weeks ago so the radiologist will ablate them on the 28th. We got Godzilla. Now her babies are on our radar.

Meanwhile I'm still in limbo waiting for the insurance company to approve the oncologist's chemo plan for me. So frustrating but I'm glad the radiologist is willing to attack while we wait.

Praise The Lord for carrying me and my family through this, despite how angry I get. He must really love me if He puts up with all my rantings.

God Bless.

- Penny

 

[PatsMom]

Penny, I have to agree that dealing with the insurance companies can be incredibly frustrating. One doctor wanted to send my specimens to a special tumor board in Boston that specializes in cancer of unknown origin. But my insurance would not cover the very expensive consultation until the local resources had been exhausted. So my case has been reviewed by three tumor boards already and is only now going to the specialists.

Good luck with Godzilla's babies! Hope the ablation wipes them out too.

Linda

 

[Redwolf8812]

How is everyone? Just thought I'd update - I was scheduled to have another liver ablation next Thursday but my oncologist and radiologist decided to cancel and give chemo another try. I had chemo on Wednesday. On Thursday, I felt pretty tired. I had to go back to UPenn for a shot to boost my white blood cell county (neulasta). In the future, they'll just mail the neulasta to me so my husband or daughter can give me the shot. It has to be taken within 24-48 hours of chemo. And since white blood cells are manufactured in bone marrow, I started with some bone pain too. I should feel better within a week. This treatment is every 3 weeks.

The drug company that makes pertuzumab (the new drug that my oncologist wants to use with the chemo) got involved and the insurance company finally got around to rejecting it. So now the oncologist will either appeal the insurance company's decision or try to get it directly from the drug company (Genentech). However, getting it directly from Genentech will probably be a bust because we make just over the income limit. And who knows, it may not work anyway, or cause a bad reaction, which has happened to me in the past with other drugs.

Anyhow, side effects (physically and mentally) are taking their toll and I may have to go out on disability. I worked the numbers and our monthly income will go down quite a bit, but my husband says not to worry, we'll be fine, God will provide, as He always does. I used to enjoy being a mom, wife, and employee, and felt I gave my all but I can no longer give 100% to all 3 vocations. If something has to give, it'll have to be work.

We're looking forward to staying in a treehouse villas (handicap accessible) in May with friends, and my two elderly aunts that live down in Florida. Praying all goes well.

I still try to remember to thank God for the blessings in my life. He loves us.

God's Blessings to you all.

- Penny

 

[lmc318]

How is everyone? Just thought I'd update - I was scheduled to have another liver ablation next Thursday but my oncologist and radiologist decided to cancel and give chemo another try. I had chemo on Wednesday. On Thursday, I felt pretty tired. I had to go back to UPenn for a shot to boost my white blood cell county (neulasta). In the future, they'll just mail the neulasta to me so my husband or daughter can give me the shot. It has to be taken within 24-48 hours of chemo. And since white blood cells are manufactured in bone marrow, I started with some bone pain too. I should feel better within a week. This treatment is every 3 weeks.

The drug company that makes pertuzumab (the new drug that my oncologist wants to use with the chemo) got involved and the insurance company finally got around to rejecting it. So now the oncologist will either appeal the insurance company's decision or try to get it directly from the drug company (Genentech). However, getting it directly from Genentech will probably be a bust because we make just over the income limit. And who knows, it may not work anyway, or cause a bad reaction, which has happened to me in the past with other drugs.

Anyhow, side effects (physically and mentally) are taking their toll and I may have to go out on disability. I worked the numbers and our monthly income will go down quite a bit, but my husband says not to worry, we'll be fine, God will provide, as He always does. I used to enjoy being a mom, wife, and employee, and felt I gave my all but I can no longer give 100% to all 3 vocations. If something has to give, it'll have to be work.

We're looking forward to staying in a treehouse villas (handicap accessible) in May with friends, and my two elderly aunts that live down in Florida. Praying all goes well.

I still try to remember to thank God for the blessings in my life. He loves us.

God's Blessings to you all.

- Penny

Penny, I'm so sorry you have to go through this nonsense with the insurance company. So far I've been lucky with mine, but I haven't had any new drugs yet. I'm sure when that happens, I'll have to fight for them. Hopefully this remission will last long enough that by then it won't be an issue.

I had to give up work early on (eta: they have since let me go, even though I gave a return date for March. Blessing in disguise. It's a horrible company to work for). Chemo has taken a big toll on me. In the beginning, I was down for the count for a week and a half. I'd go in on a Monday, get an infusion, be hooked up to 5FU, then go back in on Friday to be disconnected and for nausea meds and hydration. Then I'd have to go back in on Saturday for my Neulasta shot. It's still the same routine, but I don't get the nausea meds or hydration on Friday since the Carboplatin isn't as bad as the Cisplatin was. But the effects of the Neulasta have gotten worse with each shot. I tried once to have it the same day as my disconnect and my wbc dropped for the first time below normal levels. So I'm back to the Saturday shot. I used to get just back spasms and minor body aches a few days later, but this last time I had such horrible bone pain in every large bone in my body, mostly my legs. I look at it as my body churning out those wbc, keeping me healthy as least as much as it has control. I go down today for my last shot of this round. My CT is scheduled for 3/8 and, God willing, that will be the day they tell me everything is still in remission and I can take a BREAK! Then on the 12th we go to the World. Regardless of what that scan says, I need this vacation more than any other. I'm exhausted and I need to just get away from it all, and we all know there is no where else that can take you away from reality better than Disney World.

Keeping everyone in my thoughts. Hopefully this miserable winter will be over soon and we can all at least get outside and get some fresh air and sunshine. It always makes me feel better to feel the spring breeze in my face.



Take care,
Lisa

 

[rewardsinlife]

Hi all,
Well I have some updates. Saw the gynocologist who sent me off immediately for a ca-125 blood test to check for ovarian cancer. Just found out that numbers were extremely elevated. She told me yesterday that my case is too complicated and she is sending me off to a teaching hospital for open abdominal surgery to get the ever growing masses out and biopsied. Suspected that I might have extreme endometriosis on top of everything else. So now I wait...for insurance to go through...and then a long recovery. But, I and everyone else here will prevail! We will make it...just might have to take a few trips to Disney before the big surgery day and other treatment

Group hug!

 

[lmc318]

Hi all,
Well I have some updates. Saw the gynocologist who sent me off immediately for a ca-125 blood test to check for ovarian cancer. Just found out that numbers were extremely elevated. She told me yesterday that my case is too complicated and she is sending me off to a teaching hospital for open abdominal surgery to get the ever growing masses out and biopsied. Suspected that I might have extreme endometriosis on top of everything else. So now I wait...for insurance to go through...and then a long recovery. But, I and everyone else here will prevail! We will make it...just might have to take a few trips to Disney before the big surgery day and other treatment

Group hug!

Big hug going to you!! You've got this. Definitely take the time to get yourself ready going into the fight. I think we all agree Disney is a perfect rev-up! Sending good vibes your way. Keep us posted!

 

[GoofyGraham]

Since my last post here, a routine colonoscopy resulted in my having to have a general anaesthetic for the surgeon to have a good old poke around and take biopsy samples from the 'join'. Now waiting for the results to hear if anything is lurking.

Just to cap that, yesterday I had to have a skin cancer removed from my face.

They do say things come in threes.... hmmm what will be the third? Oh wait, that will be the herniated stoma wound!

I so need my holiday!

Don't get me wrong, I still know how lucky I am comparatively speaking.... I just feel entitled to join the 'cancer sucks' chorus.

Keep fighting folks.

 

[PatsMom]

Hello everyone, nice to get an update on how everyone is doing.

Cisplatin is an evil drug. I am having it every four weeks and it wipes me out every time. We haven't started neulasta yet because I will be on this for a while so they want to put it off as long as possible because of the side effects. I am going to China next week and will probably be on an antibiotic "just in case". Then Disney at the end of May. We work around chemo cycles but I have cisplatin/Gemzar on week 1, week 2 and 3 just Gemzar, then week four off so we cant' always do it. Especially since I never seem to get my week 2 Gemzar because my counts are so messed up from week 1 Cisplatin. Cisplatin doesn't make your hair fall out and Gemzar just thins it. I did get it cut real short this week. Easier to hide the bald spots!\

Fighting with insurance companies sucks. I keep battling with mine. And matching up bills with insurance statements and trying to make sure I only pay what I have to pay is almost a full time job! Hopefully it will settle down now that the surgeries are hopefully over and the rounds of the specialists to get a tumor type have ended. Not a fun process.

 

[rewardsinlife]

Well I don't know if I technically fit under this thread anymore...but I wanted to update you guys anyway. I had my appt. and I am scheduled for surgery on April 8th. After looking at the most recent ultrasound the surgeon stated that one of the bigger cysts. I had had indeed ruptured which caused me a lot of pain. ( had to go to Er last week for nausea, loss of appetite, swollen abdomen, and extreme pain) The surgeon believes I have stage 4 endometriosis which will have to be treated aggressively. I will have to be on strong hormone pills to put me in Pre-menopause for the rest of my life. He also believes that the endometriosis has caused a bunch of scar tissue and inflammation and is actually pushing and invading all of my abdominal organs...so he will be doing an initial laparoscopy up by my ribs( anybody have somthing similar?) so he can put the scope down and look from that direction. A lot will depend on what he sees when he gets in there, but he does believe that I will most likely lose that one ovary that's encompassed by the large cyst and it might end up as an abdominal incision if there is too much going on. I still have a solid tumor that will have to be biopsied and taken out..guess I will find out then if I have cancer in addition to endomitriosis. I have mixed feelings..happy that it is going to be taken care of so soon....but also scared and nervous for it to be happening so soon as well..if that makes any sense. I am super glad I Went to Disneyland this week and am just hoping for a fast and healthy recovery.