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Hello all my friends at BCC! It has been a long time since I have logged in…life has been very busy. I can see I have missed many posts and updates, I hope to have time later to read them and get caught up on everyone.
Meanwhile, things have been very challenging here and since so many of you were so kind to express your support of Tim’s fight, I thought I would give a brief update.
After Tim’s diagnosis last March of Small Cell Carcinoma Bladder, he did four rounds of chemo (Mar-June) in advance of his neo bladder surgery last September. Recovery was ever bit as challenging as we expected but good advice from this forum and its members helped us know what was coming and how to cope.
Unfortunately, the lymph nodes taken during the surgery came back showing signs of cancer. One node out of 30 nodes taken, but it was enough. Tim did another three rounds of chemo following that (Nov – Jan), with the fourth round cancelled because he was quite used up by that point. We were so hopeful that all that work would have done the trick…Tim was a stoic hero through all of it, including the complications, blood clots, daily Fragmin injections, broken down and blown out veins, etc. His fervent desire was to “get past it all” and “get back to normal”. He endured everything they threw at him. He stabilized post-chemo and we got him enrolled in CanWell, as he was very eager to build back his strength and return to work eventually.
Sadly, things have not gone as we have hoped and prayed. Cat Scan results yesterday showed that the cancer has metastasized throughout Tim’s body in his lymph system, in his groin and abdomen, his adrenal gland and in the chest area. We have been told this is terminal and that Tim has 4-6 months, which may be extended somewhat if he undergoes more chemo, though they are not certain for how long. A recent dizzy spell and fall he had has them concerned about spread to the brain and he will be having an MRI soon. If this is the case, he will need radiation on the brain before starting chemo.
I regret to share such bleak news on a forum to which we all come hoping for uplifting and encouragement but wanted to let you know, as so many of you have kindly expressed your support of Tim’s fight.
My heart is broken, and I think Tim is in shock…he has steadfastly believed we would get the best possible outcomes. Tim feels he may decide to move forward with the chemo because as he puts it, “I didn’t go through all of this just to throw in the towel now” and he wants to take things one day at a time, hoping that more chemo may give us more time, “a couple more Christmases.” At any rate, our oncologist is away on vacation for two weeks, so we don’t need to make any decisions right away, plus we need to wait for the MRI results first.
Tomorrow, Tim will have his follow up cysto for his neo bladder. Hoping to see that all is well there, so that he can at least continue to enjoy some ‘normal’ in that area anyway.
I will update more but thanks, all, for your support and for the emails. It means a great deal – you are much appreciated!
Teresa… the other “T” in TnTTeresa:
I have wondered many times how you were making out and have prayed for you both. I am sad to read your news here about Tim. Your dogged determination and faith-filled walk have been inspirational to many who know you, I am quite sure. And now heart breaking news. Thankfully, you know where to go in times of deep crisis and I commit you both to God who loves and sustains through even this walk through the valley of the shadows. I’d love to send you a copy of a book I recently wrote. Perhaps in it you might find some encouragement.Greg
Teresa, I have been following your and Tim’s story via your posts on Caring Bridge, and praying for you, and I will not stop. I have been amazed at Tim’s strength and endurance through many treatments and setbacks, and have been moved by your writing and faith, and your support of Tim through difficult times. Thanks for updating here. It is important for us to have support through all parts of our individual journeys and battles with BC, as well as to offer our experiences to others. I think you know that though we may not know each other personally or have ever met, you have a support group in this forum that is pulling for both of you each step of the way down this long path. Grace and Peace, Gord.
Teresa,
Thank you so much for posting your update….I just asked Jack and Greg last week if we had heard from you recently. I was very much wondering how Tim was getting along.
I am heartbroken to hear that Tim’s journey has been so rough and continues along that road.
Please, please know that I am here for you 100%. If there is any question you have, feel free to ask it or private message me and we can talk. Unfortunately, I know all too well the road you are walking but I found that sometimes others have little tips and tricks that can make a world of difference in the day-to-day stuff. I learned many things when Mike was given his terminal diagnosis and I may be able to help even if in some small way.
I hope you will gather strength from all the loving folks in our BCC gang. I know it made a world of difference to Mike and I knowing that everyone was cheering us on.
I send you and Tim each the biggest hug you can ever imagine.
Please keep us posted. We truly care.
Monique
Dear Teresa and Tim,
Thank you so much for posting such a difficult update. My thoughts and prayers continue to be with you. Know that there is lots of support here for you.
Big hugs,
IevaDear Teresa, it is heart breaking to read your update. May love and courage be always with you and Tim!
Teresa,
I know you and Tim as TnT only.
This news must be strikingly hard to handle and I can only admire how you and Tim are dealing with it. God is with you both, always and forever, and no matter what, your inner strenghts will keep you safe.
God Bless you…my prayers and thoughts are with you both.
Rick
Thank you all for the kind words, prayers and hugs. Deeply appreciated!
Just thought I would update on Tim’s cystoscope, which was on Wednesday. Tim’s neo bladder is doing very well, looks good, solid installation. Dr. S was pleased with how everything appears “up in there”. I am so glad. A piece of good news. Tim can have some ‘normal’ still in that area. So far, mucous production is tolerable and he has figured out how to handle daytime hours with no issues. Night time? Well, that’s a whole fluid-y other matter, but we both agree that given how well the neo bladder is doing, no complaints. The Maytag washing machine has nothing better to do anyway! 🙂
Teresa:
Two ideas, one of which I used and one of which “ganymede” advised us of recently.
1) I used Depend undergarments with a thick Depend pad on each side of the front absorption pad. It was effective for me 90% of the time.
2) Al found a condom attached to a catheter which drained into a bag and kept him dry and sound asleep. I’m sure he’d welcome an enquiry if such was of interest. Saves the mileage on the Maytag and on the mattress!So glad the neo is working as it should. Little blessings along the way.
Keep the faith, my friends.
Greg
Hi everyone. A further update…
On Sunday Tim had a seizure and I called the ambulance. He was taken to hospital. Later that day, a CAT scan confirmed our fears. The cancer had spread to the brain. It was shocking to everyone that the cancer could be so aggressive and grow and spread even during his most recent chemo treatments.
It was a long and rather horrifying day as we waited for results of the CAT scan, worried about brain bleed and swelling. An MRI was scheduled for Monday to further pinpoint the spots in the brain. The MRI confirmed 8 spots in the brain.
Another terrifying kind of day, wondering what to do, how to proceed. The radiation specialist finally met with us at the end of the day and spoke fairly hopefully about reducing the swelling and targeting the cancer through a series of 10 radiation treatments beginning Tuesday, March 11. There are concerns about nausea. Tim is lightheaded, has much dizziness and headaches. Nausea can occur and would not be good. He has much back pain from spending 30 hours on an emergency stretcher waiting for a hospital bed and room.
Depending on how Tim reacts to the radiation treatments, he could conceivably return home and continue to receive the treatments as an outpatient.
We are coping hour to hour. Today Tim was a bit worse, unable to do much more than just lie in bed and keep still to keep the head spins at a minimum, but at least the radiation is a bit easier to cope with than chemo. They have reduced his Fragmin shots to balance out the risk of brain bleeds. Tim hopes so much to be able to come home on the weekend…I am concerned about having him home without medical staff to jump on instant emergencies…I am not sure I am up to being solely responsible in case he seizes again or falls, but if they will let him come home, I will figure it out. I would love for him to have some time feeling a bit better, in his own comfortable environment, and enjoy a bit of normal.
We are praying and hoping hard that we will still get some time yet of feeling ok…we aren’t ready to say goodbye yet. But things just seem to be happening so fast.
I’ll take all the virtual hugs you can send!
TeresaTeresa and Tim:
Count on the hugs and also the prayers of so many for Tim. You also will need to be strengthened in grace and at times like these there is only one source of true comfort. Be assured of our deep concern and constant thought and prayer.Greg
Teresa and Tim
I am sending you both the hug of the century. Feel my arms wrapped tightly around you both and may it give you some otherworldly strength to keep up with these challenges you are facing.
I have been saying special prayers for you already but I will double my efforts and make a special request for Mike to send Tim some extra help. I suspect they would have become fast friends had they had the opportunity to meet.
(((((((((HUGS))))))))))))
Monique (you know where I am if you need me…day or night…you can call)
Teresa & Tim…we have lots of hugs and prayers for you both. Stay strong and “believe”…
Rick & Rhonda
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