Friday, November 29, 2013

I'm getting tired

Another 10 hour day.  We left at 10am and got home at 8pm.  Good news is we missed rush hour driving to Toronto and back.  He got his blood work done and while we waited for the 2pm appointment with oncology, we had lunch at the hospital.  Wednesday afternoon, he began feeling tired.  All morning on Thursday he walked around the hospital with me.  But, after lunch, he was done.  I grabbed a wheelchair for him and up we went for our appointment.  Sure enough, his hemoglobin was at 80 and they suspect the chemo will continue to effect his numbers and won't be well on the weekend.  So, they decided to give him two units of blood.   Also, his immunity was at zero.  ZERO!  The nurse on Monday should NOT have told us to stop with the neupogin injections.  OMG.  I even questioned her if it was ok with oncology!!!  Darn! I really must pay attention to my gut instincts!  They gave him an injection right there in the office.  Off we went to 4th floor to the unit to get his blood.  Poor Tony.  He was really tired.  Because it was late in the day, the rooms with beds were available.  He got a private room with TV and was able to sleep and relax while getting his blood transfusion.  (and a reminder again to the nurses re his pre-meds)  Is there a medic alert for allergic reactions to blood transfusions?  It should be in his file.  It should be on his wrist band when they give him one every visit.  It should be!  Anyone know?  Must ask next time.
He got benedryl but no Tylenol.  I must say though, those nurses were very attentive to him.  Checking up on him.  Weird thing was his blood pressure just kept inching higher and higher.  But, when done, it was back to normal.  Odd
We closed the place down.  Last patient to leave the chemo daycare clinic.
Next week we shall see.

Tuesday, November 26, 2013

The latest

Sorry followers.  It's been a difficult period in our lives.  I cannot describe my feelings for losing my mom.  I will always miss her.  I will always wish I asked her about.....  I will always miss her advice.  I will always miss the smile only a mother can give.  Many many things.   My dad is having a difficult time, which is understandable.  They were married 62 wonderful years.  I guess what I keep reminding myself is that she lived a great life.  My dad adored her, oh, how he adored her.  She had a good life.  The funeral viewing was a celebration of life.  The mass was angelic.  Angelic.  We had my brother's choir sing during the mass.  They did a wonderful job.  I know my mom was watching over us.  I know my mom would have been happy with all the decisions we made.  I know my mom gave me so much strength these past few days.  I tell Tony that he now has an angel watching over him.  She cared about him so much.  Every day in hospital, she asked how he was doing.  Yes, Heaven has an angel watching over my husband.

Tony's chemo round went really well last week.  His sister took him on Friday for his PMH day.  Yesterday, I took him to PMH and his numbers are good.  Hemoglobin was 92.  White blood count was good.  I began giving him the Neupogin injections on Sunday and yesterday, after two dosages, they said to stop because his numbers are good.  Not bad.  Still has an appetite.  His taste buds are normal.  Doesn't have that "metal" mouth taste.  No nausea.  Lost another 8 lbs.  They did give him meds called IVIG.  It's an Immune globulin.  No one could really explain exactly, but it is a blood bi-product.  Thank goodness I asked, because the doctor did not prescribe the pre-meds so he doesn't react like last time.  This pre-med consisted of benedryl and Tylenol so he doesn't get the shakes again.  Whew.
Next appointment is Thursday for another blood check.

Friday, November 22, 2013

Yesterday, a very sad day

Sadly, yesterday at noon, Heaven received an angel.  My mom.

It's been a very difficult time for the entire immediate family, as you can only imagine.  Tony continues his D-pace chemo treatment.  Today he gets disconnected.  We have been relying on family and friends to tend to all of Tony's needs.  We never leave him alone.  He is actually doing good, considering.  There are no obvious signs of a cold or anything. (knock on wood!)

More later as we have a very difficult couple of days.


Wednesday, November 20, 2013

What a week.

All I can say is what a week.  My brain simply cannot plan beyond 24 hours.  It's a stupid brain.  My sister-in-law and brother are in the same boat.  The simplest of tasks take forever to plan.  My mom's condition continues to get worse.  This morning she was moved to palliative care within the hospital.  A beautiful section.  Scenic views.  Common kitchen area.  Private building compared to the hustle of the main hospital. Quiet don't hear the beeps of the IV's from other patients like a hospital room.  You don't hear people talking loudly and dealing with all the commotion of a patients floor.  This is so peaceful.
Not sure how much time left.  Not sure where this courage to deal with this is coming from.  We never leave my husband, my dad or my mom alone now.  Planning and scheduling of everyone's life to fit this becomes challenging with "stupid" brains.  We laugh, we cry, we hug and we pray  My parents are blessed with five grandchildren who love them tremendously.  My nephew is flying home to visit his grandmother.  I hope he makes it.  Her longest conscious moment was when her priest visited to pray with us.  Before he left, Father Domenico said goodbye and she opened her eyes and said, "ti ringrazio". (I thank you)

And my other patient, my husband, the one that this blog is all about, has been put second on my priority list. Poor Tony.  Planning to have someone with him 24/7 has been ok so far.  As I type, he has completed 57 hours of 96 of chemo.  Over the half way mark.  Today, he is feeling the effects.  He has begun to have weak legs and periods of dizziness when he bends or gets up.  Although he's back on the steroids, he sleeps during the night.  Thank goodness.  So far, no other signs of infections, fevers, colds or pneumonia.  He gets disconnected this Friday at 3:15pm

Still need much strength for the entire family as we continue this difficult week.  Your texts, emails and phone calls are so reassuring.  We thank everyone for being there for us for meals, babysitting and support.
From my family to yours, God bless you all.

Tuesday, November 19, 2013

Here we go again with Dpace

Day one of Dpace Chemo treatment.
My day yesterday began with "the phone call" at 1:35am from my mom's doctor saying she was getting progressively worse since I left her the night before at 9:30pm.  Not a good feeling when you get that call in the early hours.  I alerted my sister-in-law who alerted my brother.  Not a good feeling, either, when your brother is out of town.  The sense of helplessness and not having that family member close by for support and help in decision making stuff is even worse.  (he had to end his trip early to come home-my heart ached as he did need this much needed time away)  My drive down to Sunnybrook was a lonely anxious one.
A very tough day ahead of me.
I stayed with my mom with my sister-in-law by my side.  My parents have two children.  But my dad always says he has four.  They (my husband and sister-in-law) have always been treated like family as far as my parents go.
Yesterday, I witnessed the very bad side of cancer.
Yesterday, serious decisions had to be made.
Yesterday, was Tony's first day of Dpace.
I had to figure out a way to get him downtown to his appointment.  Who can I call at 5am to make this decision?  ( I did think of you Rosemary) He had to be downtown by 9am. For those that know all these locations, you know that I had a lot of driving to do.  I left my mom to pick up Tony at home and while he drove downtown, I caught some zzzzs. His sister (who he says spoiled and treated him better than I do-hahahaha) met us at the hospital and was with him all day long.  I'm grateful that she was able to take the day off from her busy work schedule and take over this part of my "to do" today.  This was my first appointment at PMH that I was not there for my husband.  I knew he was in great hands.  She's a great advocate.  Things went well.  He did his blood work.  I think he said his hemoglobin was 89?  can't remember.  Between him and my mom these numbers are getting confusing in my brain.  The samples they took last week came back negative so he was good to go for chemo.  He was at PMH at 9am and they didn't leave downtown till 3pm.  Long day for everyone. Thank you, Paola, for the groceries and cooking dinner for Tony and Robert.  Could it be the steroids in his "cocktail" of chemo that made him eat a "delicious" dinner"? (his exact words, Paola)  No, she's a great cook.  Nothing better than meat and potatoes.  Paola's potatoes.  They are the best!
I left my mom around 7:30pm to come home.  At this point we are doing shifts to stay with her 24/7.  It's been rough as my sister-in-law, brother and myself haven't slept in over 36 hours.
I always say to save your tears for the drive home.  Well, it was an emotional drive home.  I called my best friend, my husband, and vented.  It wasn't till I heard his sadness over my blue tooth, that I realised, he has cancer too.  I need to be sensitive and watch my choice of words next time.  I know his sadness was because he felt bad for my mom and for us dealing with this. but.............not going to say it.................
our new "normal" life is about to change, again.
Tears are rolling down my face as I type this blog... ...keep us in your prayers for strength during this difficult time.

Thursday, November 14, 2013

Looks like a go for this Monday!

Today, we went to Princess Margaret Hospital for a visit to see if Tony's blood work was good to go to begin his 2nd round of Dpace Chemo.
Hemoglobin improved by 2 points over the past 7 days.  Still good.
White cell count was good, along with all his other numbers.
Last Friday he began his once a week shot of Eprex, to stimulate his hemoglobin counts.  We are not 100% sure, but either the after effects of the Neupogen or Eprex, has given him pain in one knee, one elbow, one wrist, one ankle and one toe.....Doesn't feel like gout.  Could be bone pain from the needles I just mentioned.  Odd that it's all joint areas.  His knee was the most obvious with swelling and very warm to the touch.
He's also developed a very runny nose.  They took a nose and phlegm sample for testing.  In the meantime, they have given him antibiotics.  They requested an x-ray of his chest as well.  (results are negative)
We had a new doctor visit with him today instead of Dr. C.  He listened to his lungs and felt for the tumors in his abdominal area and cannot feel anything there.  Perhaps he wasn't pressing enough? Oh, never mind because we are going with he didn't feel anything.
Andrew, the Stem Cell Transplant Coordinator says things look great to begin this Monday with his 4 day cycle once again.  I'm glad and sad.  It's been an awesome 7 days with no doctors, appetite is back and his good old "Tony attitude" is back too.  Oh well.  He can do this again!  He can!  Me too!
Oh, and a CT scan has been booked for mid December to see how those tumors are doing and then he should be ready for Transplant!
Transplant?  Can it be?  A wonderful Christmas gift for Tony?
I believe!
Update on my mom:
Yesterday, she had a biopsy done to help determine the type of cancer she has.
We are looking for a full time live in caregiver. (message me if anyone knows of anyone available)
She gets released in a couple of days and Tony begins chemo on Monday.
It's going to be a challenging few weeks for our family.
Continue to keep us in your prayers.
May God bless you all.

Friday, November 8, 2013

Follow Up appointment

We had an appointment with the oncologist yesterday to basically follow up with what the next step is and results on blood work.
Good news is no doctor appointments and medication for 7 days!!!
They are hoping to do the second cycle of Dpace chemo on November 18.  It will depend on his blood counts and health.  Otherwise, it will be on November 25.
Tony has been suffering from a sore throat and runny nose.  He has woken me up at 5am twice now to get him a tea with honey and lemon to sooth.  It's been burning him. Poor Tony.  The doctor took a swab of his throat for testing.
The blood work taken about two weeks ago did show an infection.  She was right!  However, the ones taken after his episode of shakes on Monday, were negative.  So that means the antibiotics he's on are working.
She did a physical exam of him and commented on how much the tumors have shrunk.  She feels lots of bloating, but the tumors have gotten smaller.
Once this second round of chemo is done, she will order a CT scan and all she needs to see is a 50% reduction and then they will do two back to back transplants. (keep in mind she did say before this that he may need 3-4 rounds)
Overall, yesterday's appointment was a "feel good" appointment.  She commented on how good he looks!
Since being diagnosed last year, he has lost 30 pounds.
Oh, I'm wrong.....he does need medication....she ordered Eprex to help with his hemoglobin levels.  We should have gotten the prescription filled at the hospital, but I forgot.  Our neighbourhood pharmacy has to order it in.  It will be one injection weekly for four weeks and reassess at that time.  I need to go get it as I forgot on my way home.....back outside I go.  Darn!  My mind has been so foggy lately.  I wonder why?!
Until Thursday......Unless, something else happens by then.

Tuesday, November 5, 2013

He did it! He's harvested!

WHOA!  A very very very early morning.  Due to steroids from yesterday, Tony was wired all night.  Didn't sleep much.  I'm sure the excitement of today was part of it.  Me?  I was soooo exhausted, that I did sleep.
Up at 5am.
At Toronto General Hospital before 7am.
They first collected some blood for testing to see how many cells he had and confirm that it would be enough to collect for the machine to do it's job.
Then we reported to the actual clinic where it's performed.  Second Floor. I pushed him with a wheelchair. Too much walking inside the hospital.  Can't blame him.  He was tired.  Once there, they confirmed it was a go.  Blood work was good.
While waiting for his special chair, we met a couple.  The husband was donating.  Fifteen years ago, he put his name down on a registry for a donation.  Fifteen years later, he got the call.  Someone in the world needed his stem cells.  We thanked him for his selfless donation.  Truly, lots of great people out there.  The gentlemen sharing the room with Tony was a perfect match for his brother who has a very rare aggressive type of leukemia.  He was donating for his brother.  Warmed my heart.
I wish I knew how to post pictures on this blog!  This room had two chairs, two machines and two technicians.  Each patient had their own technician taking care of them.  They had one IV line in his right arm taking the blood. It went through all the tubing and into the machine which filtered out his plasma in one bag and his stem cells in another.  When completed it went to his left arm with another IV line and given back to him.  At any given time he was missing less than half a cup of blood.  As Tony said "I am one with this machine".  Very cool to watch.  Science has come such a long way.  His technician was wonderful. Obviously loved her job.  Tony mentioned that he remembered reading an article about Stem Cell Collection in Readers' Digest.  Who would have thought that he would be part of this incredible miracle.
He was connected at 10:15am and done by 1:15pm.  Three hours. Enough was collected for two transplants.  We had to wait an hour for them to retest the collection before we could go home.  During the procedure, Tony's sister visited and then while waiting for the final news, my brother visited.  It actually made the day go faster and the support from everyone via texts throughout the day was great.
Got home at 5:30pm.  Another long day.  A good day.
Our evening ended with both our boys having dinner at our home with us.  So proud of both of them!

Our next appointment is Thursday, with Dr. C.  I guess we find out the next step.
We suspect he will need more D-pace chemo treatments to shrink those tumors in abdominal area.  Once those are gone, the next step is transplant.  Still have a battle, but he can do this!  I know he can!
Keep those prayers and positive energy coming our way.  So far, it's working everyone!
God bless Tony
Hugs to everyone!

Monday, November 4, 2013

One more sleep to harvesting

Another roller coaster day today.  Very emotional, right up to typing this blog.
Last night and into this morning, Tony has been experiencing what he calls "throbbing pain" in his back.  He is mobile, but when he lies down, it hurts him.  He was back on the breakthrough medication every two hours to cope with the pain.  But today by late afternoon, it went away.

Our day started at 9am with blood work.  Tony walked to his clinic within the hospital.  No wheelchair today.  After an hour the results showed his hemoglobin was 74.  They ordered up two units of blood for a transfusion.  They also said he needed magnesium and his antibiotics.  The nurse would give his neupogen needle as well.  Around 1pm they were finally ready for him.  We had a seat by huge windows.  Very cold. So cold that I kept my coat on the entire time.  As soon as Tony was hooked up, he wanted a blanket because he felt the cold.  Understandable.  After 2 hours, he said he was chilled.  Started to shake a bit.  I got another blanket from the warmer.  Toasty warm.  Still shaking.  Getting worse actually. Just like when he got the shakes back in August.  I alerted the nurse and right away their response was he's reacting to the blood.  Usually, if you're going to react, it would be within 15-20 minutes.  We were at over 2 hours into receiving the donated blood.  They stopped all IV fluids.  Nurse practitioner ordered steroids to combat the reaction.  Tony's breathing was ok.  Arm shaking so bad that they couldn't get a read on his blood pressure. Oxygen was ok. No fever.  He was in a room with 6 patients receiving chemo.  All looking at us. Concerned. Reassuring me. The entire chair (recliner) was tremendously shaking.  The nurse asked if he could walk to a bed. "I don't think so!!!".  The chair was on wheels and 3 nurses quickly pushed him with all his attachments to a private room.  At this point, I began to panic.  Really, though thinking about it, he was in a very safe place, receiving very good care.  But, my thought process at this point was that I felt helpless and that harvesting his cells this week would be off the table......This has been his third shaking episode.  Twice now during blood transfusions.  The nurses had him covered in heated blankets from head to toe.  They wanted him to get a fever so the shakes would stop.  Warm blankets and steroids worked.  This episode lasted about 30 minutes.  By the time it ended, he was exhausted.  The nurses told him he would feel like he ran the marathon after this episode.  Very tired.  And sure enough, he closed his eyes and rested.
Meanwhile, I contacted the stem cell transplant coordinator to get some answers and reassurance.  He came through for us.  Harvesting is still on for Tuesday.  The count for collection must be around the 10 mark and he had 120.  Excellent!
Meanwhile, the nurses quickly had viles ready for cultures for testing.  They took one sample from his picc line (two ports) one from each line and a third sample from a needle in his other arm.  They need to find out the source of this.  I forgot to mention that this morning, both picc lines were not working properly.  One was completely clogged and the other had a very slow run.  This morning, they had difficulty flushing the lines. Before transfusion, they fixed it and got both working.  They are ruling out bacteria in the lines that may have caused the shakes and/or reaction to the blood.
Once all under control, Tony fell asleep while they reconnected the magnesium to the IV.  We left Princess Margaret Hospital at 6:45pm.....Long Day!
Update on my mom:
My drive home was a phone call with bad news.  She has cancer.  84 years old.    After days of testing and poking, they still don't know the source of the cancer, but it doesn't look good :(

One day at a time......

Saturday, November 2, 2013

Phone call from PMH

Friday at 10:15am, I received a call from the stem cell transplant coordinator.
Blood work showed an infection and Tony needed to go to his nearest hospital or go downtown to him.
Well, that was a no brainer!  I quickly got us ready, packed some snacks and meds, just in case it would be a very long day.  We drove to PMH and got there at 11:45am.  Record time as it was not rush hour.
They still didn't have the full culture results in yet, but began antibiotics and Saturday/Sunday, they would know more about the infection.  Still no fevers.  Took Tony's vital signs and all ok.  Actually, his blood pressure was getting better.  He has stopped his blood pressure pills entirely.
We left the hospital around 3:30 and home care will be visiting to administer the IV antibiotics during the weekend.
Good news is that harvesting his cells is still a yes for Wednesday.
Keep those prayers going that he produces enough of those "things" for stem cell harvesting!
Enjoy the weekend everyone!

Update on my mom:
She is still in hospital.  We do not have a firm confirmation as to what is still going on with her.  Lots of tests and questions.  Hopefully, this Monday, they will be in a position to tell us more.