My dad's update (and reply to Jeannette from an old string of posts)

I can relate word for word with Tom's son. I went throught the exact same thing with my dad until his death on Tuesday. My heart breaks for Tom and his family. He is right about the advice, what I would have done different is not talk about his health so much to him and question him on how he felt everyday, it was a broken record and I regret that, hopefully this will encourage everyone to discuss the great memories that the past held for you and your loved one or the news going on that day, anything but how they feel. This is something that I wish I would have thought of sooner, but is very good advice. Thank You Tom's son and I hope you and your family has peace in knowing that you were there with him to support him every step of the way. God Bless You.
Michelle

Dear Tom's son,
My thoughts are with you in this last stage of this terrible disease. These last few weeks can be quite beautiful, as I experienced. You have a chance to grief together, which is important, , to share and even to heal together. Accepting his fate can be very liberating and can bring a lot of peace. It is hard to say goodbye, my husband went on palliative sedation at the very last stage and we had a few minutes to say goodbye, but what do you say...
Just be there, support, share and enjoy each other. I hope the experience will be as beautiful and amazing as mine was.

There is some valuable information in the chapters on "End of Life" under Treatment Options, which you may like to read.
I wish you and your family strength.
Take care,
Renee

Dear Tom's son,

My heart goes out to you and your family. And my prayers are for your fathers comfort and peace. I also pray the others reading your well written and brutally honest account benefit soon enough to make a difference, too.

I am renewed in my gratefulness to this forum also. 10 months ago I diagnosed with bladder cancer. My local urologist said he would treat it with BCG and I would be fine. Only it wasn't superficial bc, it was invasive. I was lucky that this forum advised getting a second opinion which led me to the right Drs and treatment. If not for the forwardness and compassion of those having been there, I would be in your Dad's shoes.

There is a section on this forum that I hope can offer some help and some comfort as you and your Dad are going thru this. There are experienced folks that are most willing to provide some answers/suggestions should you want help. I am glad hospice is helping meet your needs too.

You have learned some incredibly hard yet true lessons, and offer very sage advice. Enjoy the time with your Dad, let both of you soak up the good times relived and the opportunity to say what you must. I believe you will find ways to share what is in your heart and that you will both be blessed for it.

We are here for you and we care. Post or PM anytime. You are in my prayers, Holly

Sitting here bedside with my dad, who is nearing the end of life 22 months after learning that his bladder cancer had metastisized. It has been an up and down 2 years with more ups than downs. The numerous chemo treatments kept the cancer in his liver at a manageable size while he was able to enjoy his college football games and the birth of his second granddaughter.

The last four weeks have been a dizzying series of events with him appearing to have re-energized only to slow down in eating and mobility. He attended an all-day tailgate and all-night college football game only four weeks ago, it was incredible (both the win and his energy and attitude that day). Then that week he became fatigued. We kept urging him to eat supplement-filled shakes and drink Gatorade, but he could not beat it. At the direction of our doctor, we signed up for Hospice two days ago. At that point, I did what is the hardest thing I have had to do in my life. Due to the increased fatigue combined with some confusion, I had to explain to my dad what was going on. He was still fighting and realized that he wasn’t eating very well, but not sure if he really grasped what was going on. He asked me what was going on and to tell him the truth- I explained everything with the underlying message that he had only a few weeks to live.

I am being blunt in this post because it is the truth and it is unfortunately the outcome in most of these advanced stages of cancer. The last few days have been filled with visitors and it is hard to get him to talk about all of this even after asking him directly about it. It is too surreal to describe, but our family and friends have been an incredible help. This Hospice program is also wonderful so far, assisting us with medical equipment, prescriptions and bringing forward some of those difficult discussions (about funeral arrangements…). I am still trying to figure out how to say goodbye, but more importantly thanks for being such a great father…and maybe it is simple as that, thanks for everything…. Still working on that.

But I am writing this for two reasons: First, selfishly, it is a forum to reach out and communicate in a different way. Second, and more importantly, to provide some lessons learned and hopefully help some others in the same situation.

• Talk candidly about end of life issues after a terminal diagnosis- religion, after-life beliefs, burial issues, etc…. Then forget about it until hopefully years later…..
• Spend more time talking about current great life experiences or past great memories rather than about current health conditions (we spent so much time asking dad how he felt physically throughout this whole thing, it was a real broken record)
• Ask your survivor about advice that you may not be able to get from them later on (tips on being a good parent…)
• Never be afraid to ask more questions from your doctor
• Never be afraid to ask for a second opinion or a referral from your current doctor to a major cancer center
• Build your support team now and try to find those couple of people who can help you in favors (errands, etc…) and emotional support
• Say I love you at the end of every conversation or day with your survivor

I appreciate this site for all the useful information, I wish that I would have found it and used it much earlier in my dad’s diagnosis of superficial bladder cancer. Like others on this site, I think there should be better education by doctors at the early stage of this disease. My dad had superficial bladder cancer for a couple of years and we never took it as seriously as we should have and I don’t think his doctor did either. Thanks to many others who have provided some words of encouragement throughout the years. God bless.

Toms Son

Jeannette and any others,

I posted below about my dad's story of metastatic bladder cancer that had spread to his liver and pelvic bone areas. He also had primary breast cancer discovered during all this testing (see separate string below for all the details).

Since my last post in November 2006, things have been up and down. He was previously on Taxol and Carboplatin for 6 months, then took a break starting in October (because liver lesions had been reduced). He was scheduled to start chemo again after the New Year, but experienced a lot of pain in his side in late December. He had a CT and showed lesions had grown, they started chemo immediately prior to New Year. He started on a regimen of Gemzar and Doxil. The side effects were pretty rough, he lost his appetite and a lot of weight.

He was very sick at the end of February and they stopped chemo because he developed a fever. They could not locate the source of the fever and after 3 weeks in the hospital determined that it was a low grade pnemonia that those with weekend immune systems get (called it psp I believe). Frankly, it is still a mystery because none of the chest scans showed anything.

The good news was that all CT scans showed the lesions greatly reduced (so the Doxil was helpful). He stayed on a break from chemo and got his strength back after dealing with some very strong antibiotics.

At the end of the break, he looked and felt as good as he has in several months, he started gaining weight, had a great appetite and was doing tasks around the house (mowing lawn, etc...).

Another scan was done in May and showed some more growth, so he started back on Gemzar/Doxil at the end of May. We are 4 treatments in and the side effects have been limited to mouth sores and some of the skin cracking. He has continued to gain weight and felt relatively well through today. Plan is to do a scan next week, likely do another 8 weeks (4 treatments) and then see if he can do another break.

I think he continues to get Herceptin and Zometa. He has not had any issues with his hip or pelvic area since the initial radiation.

The more this reacts to Gemzar/Doxil, the more I think this is metastatic breast cancer, rather than metastatic bladder. But the frustrating part is the doctor's just don't know.

Jeannette- how is your husband doing? Sorry it has been so long since I have been on here.

Toms son