Friday, August 30, 2013

The human plumbing system

Another long day.  Minimal rest for Tony.
They did another ultra sound and they sent him to another hospital for his MRI via ambulance.  Nice young boys took him for a short drive to Humber River Finch.  Either they are graduating young or we are getting old!!!!!!
MRI showed nothing interfering the bladder function from the spine.
However, the ultra sound did show something.
I'd like to quote the doctor.  "I'm sure your wife has used this phrase with you many times, so I'll just come out and say it.  You're full of shit!"  So, this evening we dealt with the human plumbing system!  Enough said about this topic.  There's only so much I can repeat, so let's just leave it at that.
One thing though, I must say, one needs to remember to follow up on everything.  Everyone should be on top of things as a patient.  When the doctor came in to discuss his situation and give the MRI results, we had to ask about the results for the ultra sound.  He left the room to check it and came back with his bowels being full.....Scary how if we didn't ask, would we have gotten an answer.....scary.  We really need to stay on top of things and ask questions and be informed with what's going on and what options and possibilities are out there.  We have so many doctors but I wonder if that's a good thing?  Kind of makes you go "hummmmm".
Anyways, I do like this doctor.  He also recommended a kidney specialist.  His kidney function continues to worsen.  (not kidney failure stage yet)  The specialist came in and basically said she suspects kidneys are damaged from a reaction to the die they used for the CT scan.  He's had it before.  Although it's been said to not use the die with Multiple Myeloma patients.  They even gave him a red wrist band that says allergy.  I'm pretty sure it was okayed to use last week.  But she thinks he had reaction.  Not allergic, but damaged.  She also says there's a blockage and whether it's the lymph nodes or "full" bowels, time will tell.  Chemo will shrink the lymph nodes and an enema will empty the bowels.  She feels that this kidney problem is not related to the myeloma (good news) and that he will recover.  In the meantime, she feels that it's a good idea for a nephrostomy prior to chemo.  Which is a bypass of the kidneys.  Which means they will puncture both kidneys and Tony will have a bag for filtering or emptying....can't remember.  Way too much to learn for today!
This will be done on Sunday as well as the pick line on the arm for chemo treatment.  The doctor suspects that there will be another delay in chemo treatment till this human plumbing system gets better.....He was saying perhaps Thursday.....But, we shall see Tuesday morning when they are all back from the long weekend.  In the meantime, we've been told that they will be checking in on Tony's progress via the computer and emails and to rest assured that a qualified doctor will be noting his progress during the weekend.  I'm glad he's staying at the hospital.  He really needs to be monitored.
Oh, before I left him at the hospital, he did pass urine on his own.  Already a good sign!
Off to bed I go......very tired.

Thursday, August 29, 2013

I'm not a writer

I wish I was a clever writer.  Don't know how to make my blogs more interesting!
It's after midnight and I'm exhausted, so bear with me on this blog if I just don't make sense.
I can't remember yesterday.  I swear my brain is mush right now.
Yesterday Tony was exhausted.  I had to leave him for work related things and left him with him mom and dad.  God bless parents.  They mean well.  They mean well.   They mean well.
Mom was catering to his every need and more.  To the point of zero sleep and rest.  I was told to rush back so he could rest.  They mean well.  They mean well.   They mean well.
These adorable seniors waited till I got back and then left and then Tony slept and rested.
Not much news re doctors.  His hemoglobin continues to slowly drop.  His breathlessness is always there.  Even talking for long periods, he gets winded.  Forget getting up for tests, etc.  Those physical activities really tire him out.  I think he's had enough of the hospital stay and definitely hospital food.  God bless parents and a special sister-in-law for home cooked meals.  Forget Tony, "I" could get used to this!
His bladder continues to be a mystery.  Ultra sounds still show no problems.
Today was another long day.  He did rest up for the most part.  They moved him up one floor.  Much better room.  Nicer nurses on this floor.  Oh, and the most important part!  He finally got a TV!  Woohoo.  A room that has a TV that works!  LOL  $85 for 7 days.  Holy cow!  I shouldn't complain.  We are so grateful to live in Ontario where the health system pays for everything.  Cannot even imagine how much this week's experience would cost.  No idea.  Since August 19 he's had 1 MRI, 2 biopsies, 2 CT scans, numerous ultra sounds and x-rays and 1 Doppler test. I'm sure I'm forgetting more. We're talking serious $$$$$
Today they informed us that the MRI is Friday morning and he will be ambulance driven to Finch location for this procedure.  As I type this blog, he is getting 2 more units of blood to help with the breathlessness.
Two people keep coming to his room to do exercise and assessment of his physical activity and how much he can do.  They made him walk up and down the hallway one day, but want to watch him do stairs.  Somehow, he convinced them to go away!  If you know Tony, he has a way of convincing you he's right!
I look forward to them coming back tomorrow!
We were told that his kidney function is getting worse from the lab results.  So, our worse case scenario will be a bypass from the kidney while he gets the chemo.  Chemo will be rough on his kidney so they may have to do this.  I guess we'll find out after the MRI results.  They still have to rule out a few things.  Over the weekend he will be getting a pick line on his arm for the chemo and then eventually for harvesting.  YUP, he still qualifies and they still plan on doing that.  We are staying focused on that.  He can do it!  He can do it!  He is a strong man!
Nite everyone.  I'm really toast now.

Wednesday, August 28, 2013

Back to Hospital Emerg

Lots has happened and I just haven't had a chance to blog.  Sorry followers.  These past few days have been full of ups and downs of stuff.   Stuff.   Emotions, health conditions, work, doctor meetings, protocols and more.
So it all started on Sunday when Tony was not passing urine in normal quantity and frequency.  This donkey of a husband of mine was convincing himself and me that it's ok because he wasn't drinking enough.  He passed very little on Sunday throughout the day.  Between 5pm Sunday and 5am Monday he didn't go once.  On Monday morning he was speaking with a sticky tongue.  I think we've all had that feeling in our lifetime.  He was constantly sweating from the shoulders up.  I did call telehealth in the middle of the night.  Again, the donkey went against their wishes which were to go to hospital.
Finally, at 11am we left for the drive to Emergency.
At triage, after assessing him, he went from chair to bed in Intensive Care.  Holy cow!  A catheter was inserted and 600ml came out immediately.  (this is a first, experience wise, for Tony)  Poor Tony :(
Again, no fever.  Gosh this seems like days and days ago.  I'm trying to remember the events.
His oncologist came to visit him and she gave the doctor in emergency the Readers Digest version of what we've been going through and what he needs to order.  They put an IV drip in him and antibiotics.  They took blood and urine samples away for testing.
My concern was that they were doing exactly the same thing as last week to him with regards to tests.  But, they consider this a new patient and they have to follow protocol and rule out starting back to square one.  I get that now with a clear brain, but not at the time.  My anxiety levels were getting extremely high.  I called Princess Margaret Hospital for support with someone that I know.  He was wonderful.  Reassuring me that a plan is in motion and will be initiated once biopsy comes in to confirm their suspicions.  He also said that after the first chemo, he still plans on harvesting Tony's stem about 3 weeks.  So that means after all this, he isn't disqualified. WHEW!  I'm thinking he needs to be at Princess Margaret and monitored more closely.  Everyone says, he is a special case....never seen this happen before with multiple myeloma.
In the meantime, he spent the entire day there till they got a room for him around midnight. (thank you Fiorella for all that you've done!  A wonderful sister-in-law)
Tuesday was a day full of doctors and questions and investigating.
Doctor ordered an ultrasound of bladder and an echo.  All normally functioning.
At this point they are questioning a lesion in spine interfering with the flow of the bladder.  They will have to take him to another hospital to do an MRI.  (not sure yet when that will be)
The whole point of the biopsies on Friday was to restage Tony.  So the results were in and delivered to us on Tuesday------mulitiple myeloma/plasmacytoma.  No sign of a secondary cancer.  WHEW!
So now the plan is ready to go, but they need to solve this urinary retention problem.
One doctor is not convinced that that's all it is.  His symptoms are very similar to lymphoma.  He's asking all kinds of questions, speaking to EVERYONE raising doubt and making sure that treatment is correct and the follow up be in a more timely manor and not like the last time allowing the nodes to double in size before they realized.
I am comforted knowing that he has about 5 doctors conferencing and making the right decisions.
What impresses me the most is my husband.  He is asking all kinds of questions.  An example is that he read somewhere about too much calcium gives you the shakes.....he's been taking tums for acid.....tums is calcium.  He told the doctor and she walk away to check his chart and come back to him  to say "ya, you might be on to something!"  LOL His calcium numbers were slowly creeping up.  He was just above a high/normal level. I think the number was 2.63. But, I guess we'll never really know what those violent shakes were all about last week, but in the meantime, NO MORE TUMS!  no more shakes.
I had an amazing sleep last night and am ready for my day with Tony.
Off to Humber now.
More soon.

Saturday, August 24, 2013

Biopsy Day

Not one, but two of them!
First was the CAT Scan biopsy.  They used the CAT scan for guidance to get the biopsy of the lymph node.
This is to confirm if he has developed another cancer or if it's myeloma related.  Dr. J was most comforting to Tony during the procedure. He shared with us that often, when these things grow fast, they respond quickly to chemo. I was not allowed inside.  They gave him a local for numbing and proceeded.  Minimal pain.
The second one was more difficult,  Bone marrow biopsy.  To rule out leukemia.  He's been on bone strengthening medication so to collect the bone marrow and bone sample was a bit more difficult.  Dr. C did this on the back part of the hip bone.  For this I was in the room and believe you me, Tony was very brave during this procedure.  It was more painful.
All done by around 11am.
So now we wait for a follow up appt on Wednesday or Thursday for the results.  It's going to be a long few days........This part I think is worse, for me at least.
Tony continues to have shortness of breath when walking.  His legs are week from being in hospital for 4 days.
Oh, the Friday's blood work went well and they released him.  We were home after 5pm.
Had dinner with the boys and some company.
A restless night......
Next blog will be Wednesday or Thursday.
Thank you to family and friends for all your support!

Thursday, August 22, 2013

Nothing really today

They were supposed to do a CAT scan biopsy this morning.  Supposed to.  But someone else was more urgent so it is now scheduled for Friday morning.
Also, the doctor wants to do a bone marrow biopsy to rule out more things.  That's taking place Friday morning too.
So, we wait......
tick tock, tick tock.
I believe they will release him after all the procedures, but not confirmed yet.  Not sure I want him in my care.  His breathing is still an issue.  He cannot walk far without being winded.
Lots of prayers needed everyone.
Come on.  We can beat this!

Wednesday, August 21, 2013

A diffult day

I was back at the hospital around 11am.  I had so much work and things left unattended that needed attending.  I was in touch with Tony and my sisterinlaw, the babysitter during the time I was away.  He had a very restful night.
Lots of doctors and nurses tending to him throughout the morning.  I'm glad my sisterinlaw was there to listen in.  Most often you need two people to remember all the questions and the answers too!
Good news is that he did not have another "episode" today.  Oxygen mask is always by his side as comfort. CAT scan from Tuesday showed 4 rather large lymph nodes. (around the 3" range)
They did a full body x-ray (looking for blood clots) and a CAT scan of lung area and throat (looking for more swollen lymph nodes.  (all clear there, whew)
They are attempting the blood transfusion again as his hemoglobin continues to drop below 80.  They will let it drip at a very slow pace throughout the night.  Two units.
In the morning they will be doing a CAT scan biopsy.  Basically numbing the area first then inserting the needle to extract the fluid.
Causes of tremors:  could be myeloma related or infection.  So far, cultures aren't showing anything.  (I have a feeling I'm spelling cultures wrong)
Causes of breathlessness:  Lymph node pressing on something, myeloma related or low hemoglobin.
Words like aggressive, lymphoma and leukemia were mentioned.......

Not sure the plan for releasing him from hospital.
Not sure if his appointment with Princess Margaret Hospital is still a go. (it's at noon Thursday)
Not sure if harvesting will take place or yet another delay.

Plan is to be back at the hospital for 8am in time for all the doctors to come and discuss further.
Nite everyone

Needing every finger crossed and lots of prayers!

Well, not good news. Again

It's 3:15am and I'm exhausted so forgive my way of telling this latest update.
Last Thursday, we went to the usual oncology appointment.
We mentioned many things to her.  Shortness of breath, big belly, weak, tired, back is worse, low grade fevers at night (38.1 was the highest it ever got) night sweats and a dry cough.
Blood work that day showed the myeloma numbers going down, which is good but his hemoglobin was at 90, which explains tiredness.  The steroids give you chipmunk cheeks, which he has and most likely the large belly is from steroids.  OK.  I'll take that......I tell the doctor that I'm concerned about the lymph node and wonder if that's why his belly is huge.  Nope.
Monday evening he was exhausted and went to bed around 9:30-10:00.  Yelled downstairs to me to say he was chilly and shaking.  I didn't think much of it.  About 10 minutes later, he yelled down that I should go up to him and help.  I dropped everything and went upstairs. When I entered the bedroom, he was shaking from head to toe.  Badly. I curled up beside him to warm him up but he wasn't feverish.  The shakes were very wild.   I took his temperature.  36.2 no fever.  He was struggling to catch his breath while shaking. Difficulty talking. Remember, walking from one room to another made him winded, imagine this.   I couldn't calm him down to catch his breath.  His eyes looked panicked.  Thank goodness Robert was home.  I just quickly decided to call 911 for help.
Firemen came first.  I told Robert to tell them to make sure they come inside with oxygen equipment. They described his shaking as tremors.  Oxygen was given.  Blood pressure and pulse.  No fever. From the start to calming him, it took about 40 minutes.  I don't remember any of the numbers.  There were so many people in my bedroom, doing many things and asking many questions.  After calming him down, he walked down to the gurney and they took him away.  I followed with my vehicle.
In emergency, they took an x-ray, blood samples and urine.  Nothing wrong really.  Hemoglobin dropped to 80.  At this point, we still had no answers.  I stayed by his side the entire night.  He rested in the emergency.  Early morning my sister-in-law took over while I slept.  The doctor ordered a blood transfusion.  Two units.  (Princess Margaret said it was ok and it wouldn't interfere with stem cell collection next week.  As long is blood was Irradiated)  Plus a CAT scan of his belly to compare the lymph node from back in April to today.
As they were giving him the transfusion, I overheard him tell the nurse that he was getting chilly......OMG.  I looked up and his leg began shaking.  then the other one.  then his torso and then the rest.  Just like at home. Nurse stopped the transfusion, thinking he was reacting to the unit of blood.  Called the doctor.  I explained that it was the exact way as the night we brought him in.  Blood pressure was 187 over something.  No fever.  The doctor witnessing all this happened to be a respiratory specialist.  He was scratching his head.  Again, this seems to be the theme with Tony.  They all say, "never seen this happen before".  ya, well figure it out!  Fast.  This doctor was great.  He looked over the CAT scan and noticed that he had more than one enlarged lymph node.......not good news.  Suspects it is most likely pressing on his diaphragm and making him winded.  However, can't explain the tremors.  So, more blood work and tests.  They have ordered another CAT scan of lung and throat area.   I stayed till about 2am and left him resting with the oxygen mask.  Night sweats continue.   My sister-in-law is with him.  Me, I've gotten a second wind now.  My fingers hurt from typing.....going to bed now.....I'll keep you all posted.
Keep us in your prayers everyone.

Sunday, August 11, 2013

Almost time

Can't believe it's been a while since we've blogged.  Seeing the doctor once a month vs once a week really puts a toll on your imagination and not knowing.
We are days away from seeing Dr. P. at Humber River Hospital.  (Thursday) Can't wait to hear his results on blood work.  This once a month thing is stressful.  Can't believe how it plays with my mind.
Tony's gout is gone!  YAY
I treated him to a nice steak last night for dinner.  YUM
He has been feeling weak and more tired lately.  He drags his feet when walking.  Getting up from a sitting position to standing up is difficult.  His back continues to hurt.  He is back to taking the 12 hour morphine morning and night to help cope with the pain.
For the past 7 days, he's had a persistant cough.  Don't want it to get worse.  I felt I needed to take his temperature last night and again this afternoon, as he felt warm to the touch and his eyes looked feverish. Highest temperature was 38.1.  For now, I just monitor.....
He is currently on 7 days off of all chemo meds, so his energy is very low.  I try to make him walk and do more for himself, but when I do, he just falls asleep afterwards.  Out cold!  Fast.  Don't like seeing him this way.  His muscles are gone.  Small tasks like strength in opening up jars and bottles is impossible.  Even bottled water cannot be opened by him.  I see him dwindling before my eyes.
Hurry up Princess Margaret Hospital appointment. (August 22)
Hurry up stem cell transplant.
I want my old husband back.