Homepage – Forum › Forums › Metastatic Bladder Cancer › Update time for those following Mike’s story
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Zina.
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August 27, 2013 at 4:23 pm #7890
Anonymous
InactiveHi All,
A while back I asked Jack if I should keep giving updates on Mike in this forum or not since our story is not exactly uplifting. He told me that, if I was willing to, he thought I should continue.
So, here we are 5 months after Mike was told he had a tumour in his pelvic bone, one in a lymph node and one in his peritoneum. On March 22, 2013 they told him he would likely have 4 to 6 months to live.
He was in excruciating pain for many months and in June they decided to give him an intrathecal catheter to provide pain relief and give him “quality of life”. Well, I am afraid they are seriously unclear on the concept of “quality of life”.
Although Mike’s pain is somewhat controlled (he’s at a 3-4 instead of a 15), there isn’t much in the way of quality. Because the pelvic tumour is pressing on nerves and stuff, his left leg gives out on him without any advanced warning so he has fallen several times in the past month. As of yesterday, his right leg decided to join the party and is also giving out whenever it feels like it. We decided that he should no longer be walking before he breaks a bone. Needless to say, that was a devastating decision for him. He is exactly where he did not want to be…stuck in bed all day, unable to walk and do anything that he wants to do. He is very weak, pretty depressed and is not eating much these days. He is ultra-frustrated and I have never seen him so sad. As he put it “I finally got the job I wanted, working with great people, the house I wanted, I’m in touch with my daughters, a perfect wife (yes, he actually said perfect you guys) and now it is all being taken away.”
I can assure you this is tough stuff. We have had many tearfests together and still continue to do so. We definitely don’t love 2013 but we do try to take time to laugh a little too.
I don’t want to discourage anyone from going for treatment and I do still believe that everything happens for a reason but I am certainly struggling to figure out why a couple who loves each other to the nth degree would have to be separated after only 14 years together. I guess I had hoped it would be much longer. Our wedding anniversary is September 15 and I hope he will be here with me but I am not so sure he will be.
The support from the gang here at BCC remains one of the best things that has come out of this awful cancer.
I hope this news is not too depressing for everyone but it is reality for us. Sometimes bladder cancer (especially a rare plasmacytoid variant one) gets the upper hand even with all the right people working with you at a top-notch hospital. GRRRRRR!
Monique
August 27, 2013 at 4:32 pm #16042Greg
ParticipantMonique, thank so much for sharing this very difficult update. Tough does not begin to describe what you are both going through. I have found that there are simply no answers to the “why” questions. For me, I choose to look for the “Who” who also knows the why, and trust.
Don’t ever think you are unthought of. Keep going a day at time – it’s all you can do.
Wow – the perfect wife. And here I thought I had found her…
Greg
August 28, 2013 at 3:17 am #16044Kit
ParticipantMonique, I can feel the power from within you, so please stay strong! May love and courage be always with you and Mike!
Kit.
August 28, 2013 at 12:47 pm #16045Susan
ParticipantMy most sincere and caring thoughts go out to you both.
September 2, 2013 at 5:40 pm #16077Ieva
ParticipantMonique, you and Mike are in our thoughts, on a daily basis. Thank you for your post, reaching out to the rest of us. Lots of hugs, Ieva
September 2, 2013 at 8:21 pm #16078marysue
ParticipantHi Monique. I’m glad that you have the courage to continue posting even though it is a very tough time for you. I’m sorry for what you are going through and also sorry I don’t have any answers for the how and why of your situation. Life definitely sucks at times and this is one of them. The only thing that keeps me going during tough stuff is the notion that I will get answers someday presumably in the afterlife not here.
Is he still strong enough to sit in a wheel chair? If you could get a loan of one from the hospital or community services he could at least sit outside for short periods when the weather is nice. Better than being stuck in bed. For food I suggest Ensure or smoothies. That is what my mother-in-law and father lived on for their last days. It was nutritious and didn’t take any energy effort to consume. Please know that we are all here and think of you and Mike. ((((SUPER BIG HUGS)))) to you both.
September 2, 2013 at 8:36 pm #16080Anonymous
InactiveThanks Gang for all the support and especially the hugs. To answer your question, unfortunately, MarySue Mike can’t even sit in a wheelchair…that darn tumour just presses on everything and hurts too much to be in a seated position. We are lucky though, we have a beautiful large master bedroom with lots of windows and a skylight just outside the master so there is always sunshine if he wants it.
I have however been making him some super-yummy smoothies with protein powder which he used to use when he worked out and some frozen or fresh fruit with milk and/or ice cream. Those are for the days when eating doesn’t feel like such a good idea.
We have a wonderful PSW who now comes in to give me a hand 3 days a week for 3 hours at a time. Mel is an absolute sweetheart.
Oh…and Greg, I guess it is possible that there would be 2 perfect wives around…yours sounds like a keeper to me 🙂 If she’s not perfect she must be pretty close if she can handle you.
Monique
September 2, 2013 at 10:38 pm #16089KIOWA
ParticipantHi Monique: I think it is important that you post these things. There are many things that are upsetting and devastation but this is cancer and this is the reason for the forum, to help others know about it, all of it and also to support each other and sahre our feelings, all our feelings regarding bladder cancer and in this case its metastasis. It would be useless if this site focused on only the “feel good” stories. We are all in this together and at any time any one of us could find out we have the same problems as Mike. My recent back and hip pain was a concern for my dos. It turned out to be spinal stenosis and a spur pressing on the spinal cord. But it could have been cancer. We have to share the reality of all this. I don;t have to tell you that I am very close to Mike even though I have never met him. I can’t answer the why questions either except that there never was any guarantee for any of us. It’s important to focus on what you and mMike have had, not what you will lose. I think we all know the reality of where things are going and it’s painful. I recently told my wife that if the bone pain in my back and hips is cancer I would not undergo any treatment for it. I think we need to try to look at what is real, but of course never stop hoping and loving. Whatever decisions Mike or Mike and you make I am sure will be appropriate. Again, I think this is an important post and I thank you for sharing this information with us. Bladder cancer is cancer and we never really know when or where it will take us. One way or the other, we are all on the same path. My prayers continue for Mike and for you and your families.
Kiowa
September 4, 2013 at 5:21 pm #16094auntybevy
ParticipantHi Monique: I am at a loss for words. I am so impressed with the way you are handling this devastating situation. A dear friend of mine has been diagnosed with terminal kidney cancer and his wife is a basket case. You are strong and Mike is so fortunate to have you by his side. You are in all our thoughts so please do keep us posted. A lot has been said about the perfect wife, so let me add that I have the perfect husband.
BevSeptember 17, 2013 at 11:05 pm #16158TnTalways
ParticipantMy hearts aches for you and Mike, Monique. Thank you for your brave post and for all that you two contribute. It’s not much, but may the thought that someone totally unknown to you personally is thinking about you, praying for you and pulling inspiration from you, bring you at least a smile on this day.
September 18, 2013 at 1:57 pm #16166Zina
ParticipantHi Monique,
I have been away from the forum for a while, but I needed to login to tell you how sorry I am that you and Mike are going through this. Your strength shines through like a bright star. Thank you for having the courage to share these difficult times with us. Please know that you are being prayed for – that God might send you and Mike comfort and strength when you need it most. -
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