Saturday, April 27, 2013

Decision made - Let's drain

Chemo Cycles
Just sharing.  With multiple myeloma, they put you on cycles of 28 days with the velcade (chemo) needle and then dexamethasone pills (steriods), cyclophosmide (chemo) pills.  It's Day 1 of his 6th cycle.  He has missed a few due to the past few weeks of this testicle complication.  But today, we are back on track.
9am
We arrived at the hospital for the usual chemo day appointment.  The oncologist phoned us as we were still in the parking lot to say that they decided to drain the wound and testicle area that same day.  We said we were already around and would wait.
In the morning we did our usual routine with blood work, weighing in, blood pressure, etc.
Doctor's visit
She confirmed the biopsy results with us.  Even though urology did, it was ok to hear it again from oncology.So, basically, those little buggers (myeloma cells) congregated to Tony's testicle to avoid the chemo.  We learned today that our bodies have what she called a "sanctuary".  Parts where our bodies keep protected.  Like our brain and DNA areas.  So, the myeloma cells gathered there and were "hiding" from treatment, multiplying in the meantime as well.  The overage continued on towards the cord and around the bladder.  So far, they feel that the cord is not located in a protected area and the current chemo should kill them.  However, Princess Margaret Hospital has requested all sorts of numbers from blood work and biopsy to see where he is post surgery.  They will decided the next step.  In the meantime, chemo treatment was a go with the needle and pills.  All of the above was also discussed during a meeting with about 17 doctors reviewing special cases.  Dr. W at Humber said he has never seen this happen in the testicles in his 30 years of experience.  Unbelievable!  Tony had to be that "special" patient.   :)
(Thank you Elia for coming over on your day off and treating us to a DELICIOUS lunch!  Much needed.  Great company)
After lunch we basically had to wait for the urologist to arrive from another hospital.  She was operating all morning and coming to us to perform the drainage.
Drainage
I was queasy waiting for this procedure.  I can only imagine what my husband was going through.  This pit in my stomach was unreal.  The surgery was ok for me.  He was asleep and didn't have to hear anything.  But this procedure he would be awake.  YIKES!  So, at 1:30 they began prepping him for the doctor's arrival.  All the nurses in the chemo department were giving him heck for going to work too early.  Poor Tony :(
I hope he will listen to me when I say to take things slow.
Finally, around 2:45, Dr. S. arrived and was reviewing all the accessories on the table that she'd need for this procedure.  I was getting nervous.  I asked her to just tell me when to leave, because I really didn't mind.  Those of you who know me well, know that I don't do well with these kind of things......I see blood, I get dizzy and feel faint.  So, the time came and I left the room, but not really.  He was in a large room and they just closed the drapes.  I found a chair close by within earshot and listened.  He was with the Dr. and about 2-3 females nurses.  They froze him, which as per Tony was the worst of it.  Afterwards he just felt mild tingles.  They poked him about 11 times.  She wasn't happy with the amount that came out.  She was hoping more would, but most of the blood had lost it's liquid form.  Anyways, the bottles were taken for testing.  Oncology wanted tests done for myeloma and leukemia.  Dr. S. just put two bandages on the area and sent him home.  He is bedridden till Wednesday.  It was a very long day for us.  Arrived home at 5:30 exhausted.
That night Gus, Fran, Rob & and his wife  Fran came over and treated us to a delicious Chinese dinner.  It was great to not have to deal with dinner that night.  They planned it all and treated!  And dessert....Bombe.  mmmmmmm pastries.
Thanks guys!
Enjoy the weekend everyone.  The weather here is sunny and warming up.
Mary

Thursday, April 25, 2013

Biopsy Results

Sorry for the late blog.
Yesterday, I do believe, was "my" most "burnt out" day since this roller coaster ride began.
Wednesday, April 24th.
I took my son's truck in for repairs, drove him to work, worked at our family business, went to my other job and rushed back home to take Tony to his urology appointment for 3pm.  WHEW!  at this point, my body and mind was done!
Dr. S called us in. On the walk to her examining room, she asked Tony if a student could join us during the appointment.  (Keep in mind he had to drop his drawers) He hesitated.  Thought a bit and asked "male or female".  She said, "female. She's young and beautiful".  Our eyes meet and he sheepishly says, "O.K."
She picks up on his hesitation and pressure to succumb to educating the young.  Doctor says the student could join the consult and ask her to leave for the physical exam.......again, sheepishly he says, "no, it's O.K."
So, in comes this adorable, young, perky student.  Cannot describe the feelings in that room.
Doctor S and the student were great.  Recognizing the tension, embarrassment and humour in the situation.
So there was my husband on the examining bed all exposed while the student, Dr. S. and myself stood over him checking things out.  (I'm smiling as I type this) Poor Tony.  That seems to be the phrase this week, "poor Tony".

BIOPSY RESULTS.
Confirmed that it was plasmacytoma.
Confirmed that there was more in the "cord".  We found out that the cord is the spermatic cord.  She removed as much as she could reach.  There's more.  This cord goes up and around the bladder.  She is not sure where this tumor began meaning how much more is inside him. Did it start in the testicle or did it start somewhere else and ended in the testicle.  She's a urologist, not oncologist.
The medical team is having their meeting again Friday.  Dr. S. will be in this meeting with our oncologists and other specialists.  Tony is on the list for discussion at 7:30am.
They will be discussing the following:
Do we continue with regular chemo?  Do we do radiation?  Princess Margaret Hospital (PMH) may want to continue with his treatment.  Will they do a full body MRI to see where this "more" is, if there is?  May need to consult with PMH before doing further treatment.  How does this effect the Stem Cell Transplant?  Should they drain the blood in his wound?  Draining means opening him up again in the Operating Room.
Fortunately, our regular chemo appointment is tomorrow after this meeting so we should have more answers in the morning.

WOUND
Well, Dr. S found the wound the same, maybe a wee bit better than on last Monday.  It is still swollen near the wound and the testicle they removed.  There are no signs of infection as the stitches look great and no more low grade fevers.  His body should absorb the blood over the next several weeks, if not months.  Takes time.

LAST WORDS
One cannot help but find the humour in this situation.  You have to.  Tony has been behaving, resting at home.  He goes from bed to couch to bathroom breaks.  Today, I am grateful that this swelling is not more myeloma related.  This complication too, will pass soon enough.  We need to remain positive and thank God each day of life He has given us.  Enjoy your family and dear friends, every day.
Nite,
Mary


Tuesday, April 23, 2013

Patient doing ok

Good evening.
Today was bedridden day for both of us.  Totally exhausting few days.  I rested and got caught up on much needed sleep.  The worrying has gotten the best of me.  Every thought and every thing I do revolves around my husband's condition first.
Tony had breakfast & lunch in bed.  Basically got up only to use the bathroom.  In the afternoon he was getting stir crazy and began watching TV on the couch.
Business calls kept coming in for most of the day.  Both best wishes from customers and work related questions.  Kept him busy.  Made him feel important, I think.  Robert and Joseph and Dale are doing great at the office keeping things together and the staff at the back are working great.  If you're reading this, just know that we know how much you care.  Know that all your wishes were forwarded to us.  Much appreciated since these past few days off were not planned.
His swelling has come down.  Let's see what the doctor says Wednesday.
Nite.
Mary

Monday, April 22, 2013

Complications, from the complication

Well you all know what happened last week. The night of the surgery, (Thursday) he had a fever.
On the Friday, the "area" looked swollen.  No pain.  Felt great.  Low grade fever in the evening.  Kept monitoring it during the night.  We called the surgeon's office and left a message.
She called us back on Saturday morning saying low grade fever is ok.  Stay rested and stay home.  If things change we were to go to emergency.  Well, on Saturday, before the call, I had errands to run and Tony decided to come along.  I dropped him at the office for an hour.  He just wanted to clear his inbox and paperwork because he missed a couple of days at work.  So, when I picked him up, he had spoken to the doctor and I just took him straight home.
Once home, the swelling got worse.  Same thing re the fever at night.  Low grade.  Never higher than 38.3.
Sunday was really the same complaints but steady.  No fever that night.  But the constipation due to the percocets was getting unbearable.  Sunday night was a rough one.  Minimal sleeping for both of us.  Worst case of constipation ever.
Monday morning we called the surgeon to book an appointment to see her same day.  The area was continuing to swell along with the pelvic area.  It was starting to feel like the previous growth.  The wound area was healing nicely.  No sign of infection there.
Our appointment was for 1pm.  So we continued to take it easy in the morning.  Although, the constipation was getting unbearable for Tony.  He stopped taking the Percosets.
Let's just say that we bonded today like never ever.  It was me, Tony and the Rexall enema kit.  That's all I'm saying.  But I will say, it was successful within 5 minutes !!!!!!!!!!!!!!  Greatest relief Tony has ever felt.  His voice was back to normal.   He had a smile.  Demeanor all good.  Life was good again.  LOL
Oh ya, we still have to deal with this swelling!
So we saw the surgeon and she agreed that this was not normal.  She said it could be one of three things:
Hernia, bleeding or worse case scenario, myeloma related again.
She requested an urgent ultrasound of testicle area.  We drove to Humber River Hospital and we were taken care of really fast.  The technician speculated that it was blood in the testicle.
Doctor called us later in the day to confirm this.  She also says that there might be an infection.
BED REST for Tony till the next appointment Wednesday afternoon.  Bed rest!  Poor me.  He can only get up to use the bathroom.....Lucky dog!
She also shared with us that if it's an infection, they would have to open him up again to deal with it.  No antibiotics for now.  As I type, stitches still look dry and clean.  No pussing. Still dealing with a low grade fever.
Fingers and toes crossed for us please.
Mary

Thursday, April 18, 2013

Well, it's done

First, let's start with Tony's numb lip and chin area.  They did an MRI on Monday 7pm and the results are negative.  So, that's a HUGE relief.  We were worried about another tumour.

So, today was surgery day.  Plan was to enter the abdominal area and remove the growth in the testicle.  We arrived at 7am.  VERY early!  Surgery was scheduled for 9am but the doctor was running behind.  They called him in around 10:30.  Doctor told me where to wait for her to discuss post surgery.  Around 12:15 she came looking for me.  She said that they removed a tumour and a preliminary biopsy tells her that it was myeloma related.  (plasmacytoma or called a myeloma ball).  Also, she said that the "cord" that attaches the scrotum to the body, was abnormal looking as well.  (Engorged) She removed as much as she could reach.  The pathology results will tell us more.  We are scheduled to see oncology next week on Thursday.  No chemo this week.  Hopefully, the results will be in by then.  PMH says these test results usually take 2 weeks.  We shall see.
As for Tony, he looked well after surgery.  Very little pain.  At this point it had been a long day.  We got home around 5:30pm.
Around 7ish, Tony was shivering.  Claiming the house was too cold......but around 9pm I realized that perhaps he was getting a fever.  He was warm to the touch.  Got the thermometer and his temperature was at 38.9.  JEEEEESH!  So, blankets off, damp cloth on forehead and neck, sweater off.  Then, we realized he did not take any pain meds.  Even though he wasn't in pain, perhaps he should take some?  Duh. I googled the meds and they said relief from fever and pain.  So, he took two.  (percocet)  As I type this (at 1am), he has cooled down alot.  Almost time for his second dosage.

He is not working tomorrow.
Well, good nite to all.  We're off to bed.  LONG day.

PS: Just want to say a big thank you to two friends, K & M who kept me company after the news today from the doctor. I will never forget it.  Also, thank you to my friend M for leaving the pasta for me and soup for Tony for our dinner at my door step.  It was actually nice not to worry about cooking.
After all this, I now get it.  I now know what to say to people going through this.  I now know what they need and when they need it.
Keeping the faith.
Loving my family and friends.
Living day by day.
Good night
Mary

Sunday, April 14, 2013

The latest

Our day started at 10am at Humber River and with record timing did, registration, blood work, doctor meeting and chemo needle.....two hours.  YAY. And then the nurse said the doctor ordered that two hour drip that he gets once a month....oh well.  We didn't think it was this week.
We discussed his blood work.  His M protein has gone up again.  It's now at 26.  Not good but ok I guess. As long as the doctor was.
Tony is experiencing a numbness on his right side of his lip and jaw area.  Dr. A recommends an MRI on his brain to just see what's going on.  Doesn't think it's serious, but with his multiple complications it's prudent to just rule this out.
FRIDAY'S DOCTOR CONFERENCE:
The consensus was to remove the one testicle even though they feel it's benign and not cancerous.  They feel with the history with the Myeloma cancer and the possibility of plasma cytoma, it should be removed regardless.  This decision can still be vetoed by the head doctor at Princess Margaret.  For now, it's booked for Thursday, April 18.  Not sure of time yet.
TONY'S THOUGHTS
He's accepting this.  He's a bit squeamish about the procedure as any man would be.  We've spent the weekend with friends and have been coming up with a nickname for him.
O.N.  (one nut)
Hans Solo
Only one kenobi
Our friends are wondering if he'll be walking in a circular fashion....hahaha  I'll let you know.
FYI, the urologist offered him a prosthetic if he so desired.  I'm not sharing that answer.  You ALL know too much already.
I feel bad laughing about this, but the alternative is to be sad, and that really should NOT be an option.  Positive thinking.  Strength in numbers.
Thank you friends for listening, laughing and your company.



Wednesday, April 10, 2013

Results on blood work

Dr. S. (Urologist) called early this morning to say that he does NOT have testicular cancer.
So, this Friday a team of doctors will be meeting and they discuss patients and concerns and plan of actions.  Tony's file will be one of them to discuss.  Biopsy rescheduled for Wednesday, April 17.
So, they will be ruling out plasma cytoma (myeloma ball/tumour) OR an infection.  Apparently, an infection is still a possibility, although I don't get that.  He's been on six antibiotics over the past 8 weeks.  Holy smokes!
Tomorrow is chemo day at Humber River Hospital.
Mary

Tuesday, April 9, 2013

Oh, hold that biopsy


Today's urologist appointment was supposed to be a nothing appointment so we decided that I didn't have to go.  Thursday, April 11, is the biopsy and she was just following up.
Well, she asked Tony what oncology said last week and he told her they should be looking for testicular cancer as well.
Dr. S, (urologist) explained that if it is testicular cancer and they do the biopsy, they risk spreading the cancer when they go in.  Therefore, cancel the biopsy.  She said that they can check it with blood work.  They sent him to the lab for blood work.  Results will be ready by this Thursday mid day.
This Thursday, we are going to Humber River Hospital for the usual chemo and wait for Dr. S. to call us with results.
If positive for testicular cancer, they will remove it Thursday afternoon with surgery.  If not, she will schedule biopsy for next week on Wednesday.  She still hasn't ruled out infection or plasmacytoma.
Stay tuned folks.
Mary

Thursday, April 4, 2013

Long Day at Humber River Hospital today

Shouldn't have been, but it was.  LOTS of people in the room waiting for treatment.Took an hour just to register at the clinic.
We got the official word that Tony's oncologist, Dr. K. has taken an early maturnity leave by three weeks.  She did warn us that it might happen so we were prepared for the news.  We wish her well with her pregnancy and birth of twins.
So, now we are dealing with Dr. P.  She has a great demeanor about her. We've been fortunate with Tony's doctors so far.  She shared with us that the biopsy will be for a stubborn infection,  plasmacytoma or testicular cancer.  Testicular cancer would be good news compared to plasmacytoma as it's almost 100% curable, nowadays.  Biospy is scheduled for April 11, 8am.  One week more for the results.
Tony's number (m protien) rose by 3 points :(  Should be going down.
Generally, blood results were ok and she went ahead with the chemo.
He took his steriods late this afternoon.  Hopefully, the sleeping pills will make him rest up for tonight.  We are both exhausted.
Mary

Tuesday, April 2, 2013

Still Waiting

Last Thursday was Chemo day at Humber River.  The oncologist has requested an urgent biopsy to rule out a tumour.  Tony's 'M' protein went up from 16 to 22.  (the day he was diagnosed it was 58) This number should be zero.  Should be getting lower, not rising.  Doctor also mentioned that perhaps it's because he missed two chemo treatments to allow the antibiotics to do their job.  No one has answers at this point.  Friday was a Good Friday, a holiday.  No one worked.  Monday, no one worked.  Today, both oncologist and urologist are away on vacation (great!) and the secretary won't be getting a message to her till Thursday.  So, really, nothing to report.  The patient feels no pain. Still waiting......
Not a good feeling.
After 5 months of things moving progressively, we have now hit an obstacle, a brick wall, a mountain.

Mary