Monday, March 31, 2014

Follow Up Appointment @ PMH for the fevers

Not only did they relay a message to the hospital in Orangeville that we had to report to Princess Margaret Hospital on Monday, but they even called us at home early in the morning to make sure.  I love Princess Margaret Hospital and their thoroughness!
Traffic was really bad and we got there at 11am today.
Usual blood work.  Usual results.  All good.
When the oncologist saw us, she recommended that Tony's hickman line be removed to rule out possible origin of infection.  The swab taken last Thursday was negative, but just to make sure.  The wound looked irritated, not infected.  No puss still.  Results from Headwaters Hospital aren't in yet so we don't know. Tonight would be 48 hours.  Follow up appointment for those will be this Thursday.
So off we went to what they call the "Reach Clinic".  It works like an emergency room, but everyone sent there has arrived with a requisition.  We met with a very young lady to remove the hickman line.  I was present. I decided to watch.  I decided I'd be brave for him.  So, I watched over them both as she prepped him for the procedure.  Felt like an operation.  She disinfected the area.  She covered him in those green towels all around leaving only about a 3" opening.  All sterile stuff.  She pulled out a long needle to numb the area.  That's when I got up and told him how brave he was and so calm.  That's when I began watching closely.  That's when I kind of began to feel weird, but kept thinking Tony should be nervous not me.  So I decided to hold his hand while she poked him several times all around the area to numb it.  Apparently, I was squeezing Tony's hand to a point where he said, "stop squeezing my hand.  It's hurting me".  OMG!  I didn't even notice.  So, I decided to casually caress his hand and when she finished, I decided to sit down.
She began tugging and cutting to remove the hickman line.  Lots of bleeding.  She gave him 3 stitches and patched him up and placed a bean sack on the wound to stop the bleeding.  He had to wait about 20 minutes for the bleeding to stop and then we could go home.  They took his vital signs and then we left.
Home at 6pm.   LONG DAY!
Till Thursdays appointment.
Good Nite

Saturday, March 29, 2014

Men can be soooooo stubborn!

Thursday evening he had a temperature of 38.2.
Friday evening he had a temperature of 38.5.  I was at work all day. He told me that he slept a lot during the day.  He did take his temperature and he swears it was ok.  He did NOT want to go to the hospital.
Saturday around 4:30 pm, his temperature was 38.1.  WHAT THE HECK!
I pulled out the manual they gave us when released and it said to go to emergency if your temperature is over 38.5......but Tony was insisting he was fine.
Tony was insisting that it wasn't over 38.5.
Tony was insisting he didn't have a fever.
Tony was insisting that nothing hurt so he was fine.  OMG!!!!!
I decided to phone the 14th floor nurses station at Princess Margaret Hospital.  They remembered him. After all, he was there for 2 1/2 weeks!  Ya, they'd remember him.  They said he should have gone to emergency Friday night.
So, off we went to emergency at our local hospital.  Headwaters, in Orangeville.  Seven hours later we are at home.  1am.  He slept the entire time there and I was awake the entire time.  I've got a second wind now, so hence my late blog.  Need to vent.
They were great there.  He was looked at quickly (not busy at the hospital)  Took blood for cultures from three spots: each arm plus from his hickman line.  They did cultures on his urine.  They took a swab of his hickman line as it still looks irritated. They took an x-ray of his chest.  All the protocol things to do post transplant.  Preliminary blood work didn't show any signs of infection.  I did tell them that perhaps they should speak to the 14th floor staff at Princess Margaret, like I did.  Perhaps they would give them the results of the swab of hickman line they took.  48 hours would have been this morning and the results should be in.  So, the emergency doctor called them.  The doctor on call at PMH that night was his doctor!  Woohoo!!!!!  So, she ordered another litre of hydration and they gave him antibiotics through IV.  Vancomycin.  They didn't run it from the hickman line in case that area is infected so they poked him.
Once the IV was done, we were sent home with oral antibiotics.  We need to follow up with Princess Margaret on Monday and monitor him till then.
I'm tired of this..........

Thursday, March 27, 2014

One more day behind us

Today, Tony had his follow up appointment at Princess Margaret Hospital.
We only had one concern.
Tony has been complaining about his hickman line hurting him.  Pain at the opening.  During the night.
So the doctor had it swabbed.  It is very red.  Looks more irritated than infected, however, better to make sure.  No puss.
Blood work showed no concerns. No fever.  Hemoglobin is at 90.
However, drinking and eating continues to be challenging.  The patient is not cooperating!
His blood pressure clearly dropped when taken from sitting to standing.  DEHYDRATION!
Home care has been extended for another 7 days.  He gets 1 litre with the IV and needs to drink 2 more litres.  It's just not happening.  It's not described as "metal mouth".  Everything continues to have a horrible after taste to him
Fatigue is huge as well, although he is getting better.  Diarrhea hasn't happened since last night and vomiting hasn't happened since Monday night.  Slowly and surely, getting better.
As he said to me today on the car ride to PMH, "one more day behind us, Mary".
Yes, we are getting closer every day to feeling better.

Tonight, as he sat on the couch, he looked very flushed.  hummmmmm.
I took his temperature:  38.2
He is exhausted and wants to go to bed now.  We shall see how my night progresses.  I hope it doesn't get worse......

Monday, March 24, 2014

Ah, he's home

He called me this morning with good news - bad news.
Well, the good news: Coming home today
Bad news:  Hemoglobin was 76 and he needed a transfusion before being dismissed.
It's ok.  I loved hearing his voice.  It was the old Tony voice.  I knew he was ready to come home.
Yesterday they gave him 2 litres of fluid via IV, so that was good.
On releasing him they ordered home care to come visit daily to give him fluids via IV.  He just doesn't want to drink.  And, when he does, it tastes bad and it makes him throw up.
We had to depend on our son to pick him up today as I was busy.
On my way home I did groceries and stocked up on a variety of beverages and food.
Need to be prepared for whatever cravings he may have.
Dinner tonight was yummy.  Both boys were home eating with us.
Unfortunately, during dinner,  Tony did get sick.  Michael ran out of the room and Robert and I just exchanged looks.  Minutes later, Robert and I just giggled insanely at the situation and Michael came back to the room. My lovely dinner was over.   And Tony....well he wasn't a happy camper, poor guy.
Tomorrow is another day.

Sunday, March 23, 2014

Still in Hospital

There has been a delay in releasing Tony.  He continues to have the diarrhea and vomiting.  Dehydration is a concern and they don't want to release him.  They took his blood pressure while sitting and again after he stood up.  They difference in blood pressure shows he's very dehydrated and weak.  They are giving him hydration via IV and medication to stop the vomiting  :(
I'm actually ok with this otherwise I'd be fighting with him to drink while at home.  So, it's best he's at the hospital and monitored.  Everything else is good.  Blood work is on track.
Some of you are asking me if this transplant worked.  Good question.  I believe after 100 days, the doctor will be doing another bone marrow test to confirm the results.  I suspect a CT scan would be done as well to check up on those tumors......which I'm sure have now vanished after two doses of Melphalan.
And, my dad is doing ok at home.
And, I'm loving hot water!
Enjoy the weekend everyone.  It's a sunny day!

Friday, March 21, 2014

I have never said and really meant it, but I really really do: TGIF

Thank God It's Friday!
What a heck of a week for us. Or rather me.
My husband at Princess Margaret Hospital.  My dad at Sunnybrook Hospital.
Clean clothes for Tony and apples for my dad.
No hot water at my house for 2 days.
And juggling work stuff.  Well, my week ended!  TGIF.
My dad was released on Wednesday. Today, he's doing much better.  Following up with cardiologist on the 27th.
Tony, oh my poor Tony.  We thought he would be released today :(
His diarrhea continues to be an issue.  This means the C-Diff is still active.  They stopped his IV fluids this afternoon.  I don't really understand this decision.
Diarrhea = Dehydration   At least I thought it might.  They want to encourage more drinking of fluids on his own. IT AIN'T HAPPENING!!!!
I spent three hours with him today and he drank A&W rootbeer (his latest craving) and about 1/3 of Gatoraide.  He slept the entire time.  Didn't reply to texts and couldn't keep up a conversation with his mom. He spoke with his eyes closed.  The fatigue is terrible.  I told him he's like a 12 day old baby, wanting to sleep sleep sleep.  And, he says "ya, but babies eat too.  I don't want to eat".  True, but it was like this with his first stem cell transplant.  So, we just need to get over the next couple of weeks with fatigue and no appetite.  It will be challenging, but for now he needs to get this C-Diff under control.
Need to focus on the fact that he made it for the tandem transplants.
Need to focus on the fact that his numbers are getting better.
Need to focus on the fact that our vacation will happen.  This year!!!!  Together.

Need prayers for a friend of mine-she has her dad and daughter in hospital.  They say things happen in 3s. Please be wrong this time.

Tuesday, March 18, 2014

Someone is REALLY testing my faith and strength this week! O.M.G.

Sunday we had to take my dad to emergency.   Heart failure.  It was really scary to see him so vulnerable. His breathing was very laboured.
My husband was at Princess Margaret Hospital and my dad at Sunnybrook Hospital.  All I can say is thank goodness for family.  For without them, I don't think I could have managed, coped or survived these past few days.  And to my friends, for listening to me vent my worries.  
I am grateful for today.  My dad should be released tomorrow.  He is doing much better.  Follow up appointments are necessary, but the important thing right now is, he's doing better.
Tony is still on track with his recovery from his stem cell transplant.  My two very important men in my life needed me.  Unfortunately, Tony came second.  But he was a trooper.  I didn't see him today but he sounds VERY bored.  His diarrhea continues to be challenging.  His throat is getting worse, but at least he can swallow.  Although, he describes eating cereal for breakfast like swallowing nails.  OUCH!
He continues to lose weight.  All as expected with Tony.

Sunday, March 16, 2014

Not only for you, but for us and other MM warriors out there

This blog is really meant for many people.
Most important, it is linked to another multiple myeloma blog which can help others going through this terrible disease.  I figure it either reassures others that they don't have it so bad or strengthen those who do.  They say, "comfort in numbers".  Every MM person is different.  I pray for all of you out there.  There truly are miracle stories out there.  And, Tony, will be my miracle story!
The second reason for this blog is to journal Tony's story.  It's been interesting going back and reading up on his first transplant and comparing to this time.
And lastly, this is a great way to send out updates to family, friends and others who know Tony and support us all the time.
On behalf of myself and Tony, we thank you for his birthday wishes this weekend.  He had a good day yesterday.  A couple of nurses came to his room with a "hospital" cake and sang happy birthday to him. It was so nice!  And, hospital cake wasn't so bad!  It was funny because he's in isolation so only one nurse dressed up in gown and gloves and the others were in the hallway singing from the doorway.  They are so nice there!  We treated the staff today with Zeppole. mmmmmmmm

So, having said that, here's the latest:
He has thrown up twice. (I think Friday and Saturday) The nausea comes quickly and then it happens.  This morning he woke up with a black sore on his tongue.  It started to bleed.  He has no platelets.  Challenging to stop the bleeding.  Actually it bled for a couple of hours.  Still bleeding as I type, but just not as bad. Today, they will be giving him a unit of platelets to strengthen that part of his blood.  His diarrhea continues as predicted due to C-Diff.  His appetite is getting worse and worse.  Still tastes food though, but no desire to eat.  Oh, and I keep forgetting to blog this----his toes are numb.  Perhaps side effects of long term use of Revlimed.  Need to follow up with doctors on this soon.  (neuropathy-not sure on spelling-many MM patients get this)
Hemoglobin: 92
Platelets: 10
White blood count:  -.1

Oh, and after the cake, a team of nurses came to the door and announced that they had to move him.  He was in a private room that protects the entire hospital from any airborne viruses and a patient needed to be in that room.  C-diff is not airborne. So, everyone grabbed something and we all went down the hall to another room.  Tony wanted to walk and the nurses all said, yes you can, BUT DON'T TOUCH ANYTHING!!!!!!!!!!!!!!!  STRAIGHT TO YOUR NEW PRIVATE ROOM!  It's actually a nicer private room.  He has a view of University Avenue.

Well, another day in downtown Toronto.  Off I go to visit him.  Let's see how today goes.  It's going to get worse, before it gets better. :(

Wednesday, March 12, 2014

All as expected and more

Monday, I didn't visit him in the hospital.  But our son Michael went for a bit after work.  Nice visit.
He was doing really good.
Tuesday late afternoon I went to the hospital.  He was happy to see me.  After too much togetherness, you actually really miss each other.  He looked fantastic today!  He had shaved his beard, but it's still growing. I'm sure it'll stop soon.  Happy to announce that his hips are all normal.  WHEW!  His appetite is ok. Perhaps starting to lose it a bit.  No real cravings.  I'm glad his sister is nearby working and able to make an appearance these past couple of days with food.  He's enjoying that.
His hemoglobin was 76 so they gave him a transfusion.  One unit.  I arrived at the tail end of receiving it.  No premeds again and no reactions.  His bowel movements are getting loser.......normal reaction to the chemo, but one wonders if he is getting C-Diff again :(
Today, Wednesday.
Hemoglobin is in the 90s, which is better.  Toronto woke up to a really bad snow storm today.  Although I did venture out to work and ran a few errands today, I just really didn't feel like heading downtown to visit with him.  Parking lots had up to a foot of snow!  He needs his pillow, but that can wait.  Instead I went home and joined my friend at our church and we said a prayer for Tony.  It felt good.
Afterwards, Tony sent me a text message at 8pm with the sad news that his stool tested positive to C-Diff :(
Poor Tony.  He has decided to stop eating to lessen the trips to the bathroom.  It's pretty bad.
I shall go first thing in the morning to visit.  He is now confined to his room.
Hello gowns, masks and gloves!  Not pleasant for me, but worse for Tony.  I hope he recovers soon.

Sunday, March 9, 2014

Happy NEW Birthday Tony

Around 11:45am today, he received his new stem cells.  Same procedure as the last time.
They came in a freezer.  Technician thawed them.  Nurse connected him.  All of seriously, 4 minutes. Quick. Vital signs were taken continuously.  Premeds were given before transplant to eliminate reaction.  They gave him a candy to suck on because during the transplant, he would get a tickle at the back of his throat.  His face flushed.  Blood pressure dropped a bit.  But afterwards, all was good.
I made it in on time.  His sister and mom were there to witness the event.  My brother, the guy who knows downtown like the back of his hand, missed the University Street exit and missed the entire event......We just couldn't wait.  Once the stem cells arrive and they thaw out, they must be put into the body.....sorry Joe. (He was there for the first one)  It's ok.  We had a great visit.
Tony is doing well.  His hips are getting better.  His spirit is good.
Now, we just need to brace ourselves for what's coming ahead.
Mouth ulcers.  Loss of his appetite.  Tiredness.  Forcing him to DRINK.  OMG.
For now, I tell him I'm on vacation from him and am getting ready to battle with him.
The house is very quiet without him :(


It's Melphalan Day

March 8, 2014
Well, he received his 414mg of Melphalan today.   It's really strange to watch this fluid go in through his IV and not feel anything.  Once again, the ice chips were on hand.  (the nursing staff is always so kind and wonderful) Chewing 15 minutes before, 30 during minutes during and they say 15 minutes afterwards, but I made him chew for longer.  They say that the chemo, once in him, will run through and do it's damage minutes once it's in you.  Afterwards, I guess your liver and kidneys take over?  I don't know.  The damage is done.  All the "weeds" and "grass" in his body have been killed.  The good and the bad.
Tomorrow, he will receive "seeds" to grow the good stuff.
Tomorrow is his stem cell transplant.
New growth.
Healthy growth.
New birthday.
Well, I'm off now to witness his new birthday, March 9, 2014.
Should be around noon today.
Tony's sister and my brother will be there to witness this miraculous event.  All in the family!
Ciao.  Gotta go or I might miss it!

Friday, March 7, 2014

Got the call! Transplant #2, here we come!

Around 11:15 am, Tony received a call from Princess Margaret Hospital saying they have a bed for him.
YAY  Check in was by 9pm.
Earlier on we received an email saying that the x-rays of his hips showed nothing serious and that he was back on the list as of yesterday as second in line for a room.
We ran several errands throughout the day together.  Remember, Fridays is Dex (steroid) Day, so I was dealing with a high energy man.  A very productive day.
Tony felt like a steak dinner before checking in to his room, so we had dinner at our favourite Italian restaurant.  They did not disappoint his craving.  A delicious steak dinner for Tony!
We went home to pack a few other items and then walked into the famous 14th floor to admit him at 8:50pm. Ten minutes to spare.  He has a private room with a private bathroom with shower.  Until someone needs a private room due to health issues, he gets to stay there.  He's happy!
(thank you to my friend for keeping me company for the drive home.  Very very grateful.  It's such a long drive)
Tomorrow he gets his chemo to kill everything and Sunday he gets his stem cell transplant.

And that journey begins, yet again.
The anxiety is missing.
This time, we know what to expect.

If you'd like to visit Tony, please text or FB me before going.  It's best to stay away if you're coming down with a cold or have flu like symptoms please.  This floor is very strict with visitors as everyone has immune issues, so please check with us first.  For Tony's sake and other patients and for yourself too in case there's an outbreak of something.  Thx.

Wednesday, March 5, 2014

Still no call

Yesterday, we went to Princess Margaret Hospital to get an x-ray on his hips. They also did blood work to check his Myeloma numbers.  We went to the clinic and were told that they would call us with the results. The stem cell co-ordinator suspects one of two things:  long term use to steroids or Tony over did it with walking two weekends ago.  Either way, this man continues to struggle climbing stairs and getting dressed. Everything else is fine.  
So, we suspect the transplant may be on hold till they get these results.  Most likely won't hear anything till about Friday.
Till then......

Saturday, March 1, 2014

Still waiting for that call...

Eight days ago, Tony's right hip began bothering him.  He cannot tell if it's bone or muscle pain.  Thinking about it days later, he HAS been eating foods that can aggravate his gout.  So, perhaps it's gout pain?  Don't know.  He plans on telling his doctor when he gets the phone call to go in.  The pain is so bad that he cannot lift his left, so going up stairs, driving and dressing have been challenging.
Other than that, really no new news.  Just waiting for that call for availability at Princess Margaret Hospital.
He is 65 days old.