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Well have made it through the first round of Chemo.  My husband is doing ok.  He had alot of throuble after the first treatment with the nausea and is exhausted all the time.  He is still trying to work as much as he can and has been able to do at least 2-6 hours a day.  Went to the Urologist today and he said that they might not have gotten everything from inside the bladder so will have to do a biopsy on th 25th.  Also saw the Oncologist today.  Put him on Leviquin since his white cell count is high, also going to start the next round next week.  Might have to have a port put in as is having trouble with his veins.  I don't know how some of the caregivers keep going.  We don't have any family close by and am having to deal with his care on my own.  I am running out of steam.  I have alot of days when it is hard to stay positive, but I know I have to because I am all that he has here.    We live in Maryland, but will be flying to Buffalo NY on May 12th to attend our daughters graduation from College.  He is determined to be there no matter what and I have some concerns he will over due.  His chemo will be on Tuesday May 12th and is the more intense of the two that he has per round.  

I could use some advice on how to handle things.  My husband is having a hard time accepting that they might have to remove his bladder.  He says the doctors don't know what they are doing and that all they want is the money.  He generally gets worked up before he has a proceedure, in this case the biopsy.  I know his fears are about our sex life and what will happen if he has to have more surgery.  Usually after talking things thru he is in a better frame of mind and not so angry.  I don't know what to say anymore,  I try to reason with him.  He just seems more angry.  I am not sure it is wise to change doctors at this point, but he is having a hard time trusting the Urologist.  He feels that he is the reason that the cancer got out of the bladder.  

If your husband feels unsure about the care he's receiving, then it's absolutely the right thing for him to do in looking for another opinion.  Call your local American Cancer Society and perhaps they can refer you to another Urologist in your area.  A second opinion is never wrong, and I've actually heard of some people who have gone much further than that (3rd, 4th, etc).  
You haven't mentioned if you're receiving care from a large medical center or a smaller community hospital, the larger the hospital the more probability the doctors are more experienced.  A best bet is to find a University Hospital especially if there's a medical school also associated there.  Your husbands recovery can very well be affected by how comfortable he feels with the care he's receiving, but also another thing that can help him is knowledge about his illness.
Another item I'd like to mention to you is that people have come back from even advanced T4 cancers, some even when doctors have told their patients they have maybe thirty days to live.  When I was first diagnosed in December 2003 I went looking for books about bladder cancer (there weren't any) at the local book store, and one of the books I found that ended up giving me a lot of meaningful information about beating cancer (according to the author) is titled CANCER 50 ESSENTIAL THINGS to DO by Greg Anderson.  It has some really great information and I think the two of you may find a great deal of peace also within its covers.
Since that time I found a book that happens to be written by a doctor (actually a group of doctors and nurses I think) and it's titled The Guide to Living with Bladder Cancer by Mark P. Schoenberg, M.D., F.A.C.S..  I think this book may also be referenced somewhere on the Bladder Cancer Web Cafe main web site.
I hope that the little bit I've written here might be of help to the two of you, and I would be happy to keep writing if you like.  It could be on this site or by email which ever you prefer (if you're interested).  I'll keep you both in my thoughts and my prayers.  God Bless.

Lou Graham

Thanks for the response.  I will look for the books.  My husband Gordon is going to the Harry and Jeanette Weinburg Cancer Center in White Marsh Maryland.  His urologist is just South of Baltimore and is affiliated with St. Agnus Hospital.  

Gordon is an avid huter and fisherman.  I have know him for 15 years and he has not been sick hardly at all in his whole life.  He had his appendix removed when he was 15 and broke his leg in his twenties.  Other than that he has had nothing more than a cold or the flu.  This whole thing started for him last October.  He started loosing his voice.  He went to an ear nose throat doctor and they discovered a cyst on his vocal cords.  He also has Barretts Esophagus, but so far no cancer.    Since all this began they have found that he has kidney stones, gallstones and a cyst on his left kidney.  He has also had a liver biopsy because his enzymes are high, but they have not been able to find anything.  Sometimes this is all hard to take in.  He is having alot of trouble with being so tired.  As active as he has been his whole life,  this seems to stess him more.

I know the his faith in the urologist is shaken as the doctor tells us everytime that he does a proccedure that he got all the cancer, then when he goes back for followup he says that now he is not sure.  When he went for his followup from his last surgery the doctor told him that know he is not sure if he got all the cancer from his bladder.  He wants him to have another scope biopsy.  For me I would like him to have it done.  I want to know if they see anyting in the bladder.  Gordon's problem with it is that not only is it somewhat painful, it is also intrusive.  He hates being on that table and being so exposed.

I think I need to get more information for him about having his bladder removed and all that it entails.  He is not good with the computer, but I try to find information for him and print it out.  I think he might also benefit from talking with people who have had their bladders removed.

Gordon and I spent the weekend in Buffalo, NY.  He was very tired and had to take a number of naps.  He had his "Big" Chemo on Tuesday and we flew out Friday afternoon.  It was fun to see all of our family.  We saw 5 of our daughters and 5 of our grandchildren and then attended graduation ceremony on Sunday afternoon.  Today Gordon went in for his blood test and to see the doctor before they did his chemo.  Last week his white cells were really low so the thought maybe he wouldn't have chemo this week.  Other then being dehydrated again, they said that it was ok to proceed with the Chemo.  Since he has been really tired he was hoping to have this week off.  They gave him two bags of saline and then did the treatment.  He has to go in tomorrow to have a shot of Nuelasta.  Has anyone had this, and can they give us an idea what to expect that would be great.  He has been trying to work as much as possible, but I think he is overdoing a little.  I am hoping he will cut down to 4-6 hours a day until his chemo is over.

I wrote a response to another post yesterday afternoon, and some of what I wrote in that post might be of some interest to you.  It's related to getting information about ones cancer and where it is possible to find some of that information.  I just decided to check to see if there's a Comprehensive Cancer Center near you and this is what I found;
Martin D. Abeloff, M.D.
Director
The Sidney Kimmel Comprehensive Cancer Center
at Johns Hopkins      401 North Broadway
The Weinberg Building, Suite 1100
Baltimore, Maryland 21231
Tel: (410) 955-8822
Fax: (410) 955-6787
(Comprehensive Cancer Center)

I went to their web site at www.hopkinskimmelcancercenter.org and found that they do have information available for patients and families of patients concerning cancer and its treatment, etc.  I have no idea how close you are to this cancer center, but I expect you will find some very good information at this center and perhaps can make arrangements for your husband to be seen by one of their Urologists.  Go to their site and read what they have there on bladder cancer, that alone may be something that helps how you both feel about what you're going through.  

Good Luck and God Bless.

Lou Graham

Well it doesn't seem like things are going good and it is hard not to get discouraged.  Gordon is really having a rough time with the chemo.  He now has the mouth sores that have moved into his esophagus and that is really painfull.  He went Monday 5/22 for his bloodwork and it wasn't too bad execpt for his white cell count.  He had to go back yesterday morning due to having a slight fever, chills and sweating.  They did some blood cultures and a urine sample.  They found white cells and red cells in his urine.  We are waiting on the doctor to call today to let us know about the cultures.  He has an appointment with the urologist for Friday 5/26 to have a biopsy to see how things are.  The doctors are hopfull that the cancer isn't back, but Gordon says that he feels that it is.  

Well we finally have some good news.  Gordon had a scope done a few weeks ago at his urologist and he didn't see anything.  His chemo was changed to something that is not as strong as the Cisplatan.  His Oncologist says that they are going to finish out the last two rounds of chemo, do a bone scan and a PET scan.  If they are both ok, he will get a break for awhile.  They will scope his bladder again at the end of August and if that is ok, he should only have to go back every 3 months to have a scope to make sure he is still doing ok.  I don't know what the name of the drug is that they changed him to, but he had it last Friday instead of the Cisplatan and he did alot better with that.  It was the first time that he didn't get sick after his chemo.  We were able to go to Washington DC on Saturday with his childhood friend that was visiting.  He still gets tired sometimes, but no where near as bad as before and the nasuea was very mild.  He is very happy to be back at work full time.

Well it seems we are finally winding down things.  Friday 7/7 is Gordon's last Chemo.  He has done much better since the changed his drugs.  He doesn't get sick at all from this new stuff.  The only down side is that they give him so many steroids that he is like the energizer bunny for about 3 days after his chemo and then he get really tired.  Expect to have some test run after Friday and they will need to keep an eye on his blood test to see if he finally bounces back all the way.

It is a little scary to wounder how long he will be cancer free.  I guess we will always worry about it coming back, but hopefully during the 3 months he has a break we won't stress about it to much.

I'm happy to see that things are going so much better for Gordon and for you as well.  It may seem as though you will always worry about whether or not the cancer will come back, but it is possible that he can beat this cancer.  When that happens you will be able to go days without thinking about it's returning, perhaps even weeks.  However it does take time to get to that point, and one must be diligent about following your doctors orders and getting all of the follow-ups necessary to keep track of your current health.
Best of luck and keep us posted.  God Bless.

Lou Graham

Gordon finally finished his Chemo a few weeks ago.  Then he had two weeks of blood test.  He saw his Oncologist last Friday.  He thinks everything looks good. Gordon has to have a CAT Scan in three months.  We thought they would do more test now, but the Oncologist says no.  In a way that is kinda scary to me.  He hasn't had any tests since the end of May, but I guess we trust the doctor to know what he is doing.  

At the end of August he will go back to the Urologist to have another scope.  We are going to keep our fingers crossed that everything looks good.

Anybody have any thoughts on signs that we can watch for to give a hint that the cancer is back besides the blood in the urine?

Gordon is still getting over the side effects of the Chemo, but seems to do better each day.  He has been back to working full days for about 2 months.    Mostly he is tired and has some pain in his legs.

I'm glad to hear that things continue to improve for Gordon. Waiting until the next test (cysto or ct or whatever it is) is always difficult in the beginning, but as you and Gordon get further out into beingsurvivors it will become less stressful. As far as I know there aren't any other signs you can look for other than the blood to tell you if anything new is back (in the bladder anyway), but perhaps there are others who have more experience with this than I do.

Lou

Well, I bought urinalysis strips off of ebay that test for microscopic blood in the urine.  Of course my urologist told me to throw them away after my first positive reading had me calling him on a Saturday.

But, I still do check for microscopic hematuria using the strips about weekly.  Probably not advisable, but if your super-paranoid like me it can't hurt.

Well I am keeping my fingers crossed, first that Gordon goes to his urologist appointment tomorrow morning and that everything looks good.  It is his first scope since he finished Chemo.  He is giving me a hard time about going, but I think alot of that is just being nervous that it won't go good.  His last scope was in May and everything look good then.  He has been tired still and now he has a cold.  Hope you keep your fingers crossed to.

He just had his 51st Birthday a few weeks ago and is happy to have made it that far.

I like to try to have a positive attitude, telling that to onesself isn't as crazy as it sounds, and another thing to help relieve stress is deep breathing.  I have posted a description of a proper deep breath somewhere else on this site, and perhaps you'll find it easily.  I'll look for it from my last reference to it, and I'll come back and post it's location for you.  Tell Gordon that it's normal to be a little nervous about the results of the scope, but I always told myself that no matter what is ahead I can't change what it is and that no matter what it is (good or bad), that I will be able to deal with it and I will survive it as well.  I still had my times when I was worried and nervous, but then I'd kick myself back into the more positive mode by listening to some music (my favorite song, YOU RAISE ME UP).
Best of luck for tomorrows test and it's result, and tell Gordon we're having positive thoughts for his outcome.

Lou Graham

Here's the location of the Deep Breathing technique that I mentioned in my previous post (above), and I hope you find it as helpful as I have. Look in the Superficial BC portion of this site and go to the Post by WHITLO, my description is # 8 in that string of posts. Tell Gordon to do some deep breathing, it will reduce his level of stress.
Best of luck with the cysto, I'm thinking of you today and tomorrow (and other days, too).

Lou Graham

[Well things are not going well.  Gordon finished his Chemo in July and things seemed to be going better.  He had a scope of his bladder done in August that was good.  He started having some pain in his legs and was extremely tired again.  He went to see His Oncologist in September. The Oncologist said he didn't know what was causin the leg pain an for Gordon to go ahead with the CAT scan they already had schedule for October.  There was some question about a lymph node in his abdomen so the Oncologist ordered a PET scan and said that he wanted Gordon to have another scope of his bladder.  Well as we all know timing is everything so it was great timing that his regular Urologist no longer took my health insurance.  After some stressful days trying to find another Urologist that could see Gordon right away, we ran into a brick wall.  Finally his regular Urologist office called and said that they would see Gordon the next day and work the bill out later.  The Urologist he usually sees was out of town, but his partner agreed that he would see Gordon and do the scope.  After looking at Gordon's bladder, he said that he saw an area that was bulging in and did 2 biopsies.  We received the results the day we were leaving for an 8 day cruise.  The biopsies were negative and the Urologist said that he would see Gordon back in 3 months.    When we got back from our vacation Gordon had an appointment with his Oncologist to discuss what would be done about the lymph node.  He told Gordon that he honestly didn't know what to do at that point.  He made an appointment with a Radiology Oncologist and another with a Urologist at John's Hopkins.  He said that he felt he needed some help from the other doctors to make a decision on how to best treat him.  

At this point it important to point out that they have all told Gordon that he has the highest grade and  stage cancer.  Gordon saw the Radiology Oncologist and she set him up with an appointment to get started for Radiation.  We went to John's Hopkins (this is supose to be the best cancer hospital in the US) and neither of us was at all impressed.  After filling out paperwork and waiting an hour and 1/2 to even see the doctor, he only spent 10 minutes with us.  He didn't even really talk to Gordon about anything.  He started by saying that since the margins were good after the last surgery, we both cut him off at that point to tell him that another pathologist had looked at the sections from the surgery and said that the margins were not good.  He then proceeded to tell us that he needed us to get the slides of the biopsies from the cancer center and bring them to him so that his own people could look at them.  He then wanted Gordon to have a needle biopsy of the lymph node and not to start radiation.  He also said that he wanted to do a maping of his bladder by taking biopsies from all over.  Needless to say he was very cold and seemed like we were bothering him by even being there.  

It is a long drive from were we live to John's Hopkins.  After talking with the Radiology Oncologist it was decided that Gordon would have the needle biopsy at the hospital by the cancer center.  He had that done last Friday.  The Oncologist called today and said that Gordon needed to start treatment immediately.  Tomorrow morining he is sceduled for 3 days of intense Chemo.  They they will monitor his blood for 3 weeks and do 3 more days of Chemo.  When he has finished that he will start radiation everyday for 5 weeks.

Sorry it took so long to update but it has been a little crazy here.

Well I finally have a few minutes to give you an update on Gordon.  Were are both about at the end of our ropes.  Gordon had 2 weeks of intensive (the doctor said the strongest) chemo in December.  He had to go for three full days a week and then have 3 weeks off for his blood to rebound.  This was done twice.  He didn't get really sick, but did lose his hair this time.   The only real problem he had was the nulasta shots when they were done.  He had alot of pain and vomiting after the shots.  Last Thursday 1/11/07 he had another CAT scan to see if the chemo was shrinking the lymph node.  He went to the doctor on Tuesday and his blood work was starting to rebound, but wasn't great.  The doctor told him that the results of the CAT scan showed that the chemo didn't do anything and that he won't be having anymore chemo since it doesn't work.  He told him he sould try the radiation and that there is a 50/50 chance that it will do something.  His radiology oncologist has the same opinnion.  

We are trying to decide what to do at this point.  It is just the 2 of us here in Maryland and our family is in New York state and Florida.  We have our house for sale and were planning on moving closer to his parents in Florida, but have some thoughts that maybe it is time to go back to NY to be closer to the kids.  

The radiology oncologist said that we have to make a decision hopefully by the end of this week since she wants to do 6 1/2 weeks of radiation.  She also told us that if we are planning to move once the house is sold, that maybe we should go now so that the same doctor that does his radiation is able to do his follow up care.

Gordon is having a very difficult adjustment to this since because of the chemo he has not been able to work and is not use to this.  He is also not sure if he wants to endure any more treatments.  The doctors have told him that the cancer will spread, but they might be able to slow it down with the radiation.

Will keep you posted on our decision

I'm sorry to hear how difficult things are going.

Maybe moving back to NY and your family would help with your husband's restlessness with not being able to work. Being around your kids could be a great source of support through radiation.

I realize that would be an upheaval you may not have reckoned on, maybe it's too much. Your husband is the only one who can truly make that choice, as his situation takes priority.

Wishing you well,
Wendy

Hi
I just wanted to send support .I cant answer the things you and Gordon are going through but I do understand how wretched chemotherapy makes you feel and to hear afterwards its had no effect must be demoralising.Being close to family is a great support but speed and ease of treatment is also very important with high grade tumours.
I hope things get better for you both and send lots of love
    Claire xx

Dear pmcgdc

Sorry I couldn't find your real name in your posts. I have been following your postings on your husband and was just wondering how things are progressing as we haven't heard from you for some months. Please post an update when you are able so that we can understand your situation and try to support you as best we can.

Regards

Jeff