I, the caregiver, have been stressed. Last week was a bad week. Lots happened. So much so that I truly didn't feel like talking about Tony or anything. This past weekend was a relaxing one spent up north. Tony got some sunshine and even got lots of social time with the baseball team. He is growing beard & chest hair. It almost felt normal.....
Last week:
It was Tony's first trip back to Humber River Hospital since September 2013. I was getting anxious, for a number of reasons. Memories of his one month hospital stay. Memories of bad news. Memories of long long days spent by his side. Memories of chest pain for me. ugh!
I dropped him off at the front door and he walked in alone while I parked. On his way up in the elevator, he met his original oncologist-the one that left for maternity leave back in March 2013. The one who said he would be fine. The one we enjoyed seeing. She was glad to see him.
And then he met the doctor who cared for him during those bad times. She actually gave him a hug and was sincere about seeing him again.
And then the nurses and staff....OMG they are sooooooo nice. Since he walked in without me, they asked him where his wife was. That's nice. They all came up to him and asked how he was doing. Saying he looked great. (he lost a lot of weight-looks very frail) but they all said he looked great. He had a great smile on his face.
And then we met a fellow multiple myeloma patient. Someone we met on his first visit when told he had MM. His wife was there as well. Tony and Paul have been texting and phoning each other since then and hadn't seen each other since October 2012. It was great seeing them and chatting. It actually made our morning go by faster.
They did his blood work, etc. Then we went to see Dr. K. She got caught up with all of Princess Margaret's progress. She seemed good about his progress. He is to continue on with Dex, valcade and Revlimed. The valcade is a weekly injection, so follow up again is every Thursday at this location.
Friday:
Friday we received a fax with very detailed reports from everything. Something we requested. Something I didn't expect to see. I had to read them twice! I wasn't sure if I read them right, but I did.......
His Myeloma Protein number was climbing. Here's a history and you judge:
57.7 October 2012 when Diagnosed
2.9 December 12, 2013 after the last D-pace treatment
4.6 Feb 2014, after first transplant.
5.8 March 2014, just before second transplant.
2.9 April 2014, just after second transplant.
5.9 May 2014 ?????????
This number, from what I remember should be zero...... His IgG is at 17.8 (63.2 when diagnosed)
This Thursday's appointment cannot come soon enough!!!!! I need answers. I know it's not a huge climb, but it is a climb. Blogs we follow say that these numbers fluctuate and that's why they wait for 100 days post transplant to reassess your situation. I'm trying to not dwell on this but.........I'm very hopeful knowing that there are more options and treatments available for him. It just pains me to see him struggling with getting dressed and doing daily activities that many take for granted.
Also, today, I felt a cyst like something on his left abdominal area. What gives me courage is that the other tumors didn't feel like this one. It is about 1".
Today:
He was back at Humber for his pre-op appointment. He drove himself and parked and everything! WoooHoo! Without me. This is just a routine appointment for his procedure coming up to remove the two nephrostomy tubes near the end of the month.
Well, the GEMM Team is currently sitting at $7,095 funds raised and still counting! That is great news! I'm still trying to find time to solicit people. So, if you haven't heard from me yet, you will fellow readers!
Here's the team page. Look for a name you know and sponsor that person. PLEASE....I need your help. Princess Margaret needs your help.
www.5kwalk.ca
You will see our team page in the top teams at the bottom right hand side of the site. Click on the GEMM Team and follow our progress!
Tuesday, May 20, 2014
Monday, May 12, 2014
Day 64 post stem cell transplant.
Well, it's been a very stressful few weeks. In fact, I really didn't feel like blogging......
I thank you all for inquiring about Tony's status during these past 12 days. It warms our hearts to hear from you all. It truly does.
Since my last blog, Tony's diarrhea continued and he just kept losing weight. His lowest weight was 200.5 lbs. He looks very weak and just can't hold anything in. We didn't get a call from the hospital with regards to his stool sample, so we assumed c-diff was negative.
May 8th we saw his oncologist at Princess Margaret. She shared with us that they received a verbal confirmation that Tony's stool sample was positive for C-Diff.....which explains the diarrhea, loss of appetite and continued weakness. His left hip has been an ongoing issue. He walks like a senior. This is from over doing it. Too much walking. The x-rays didn't show any breakage which is good. Blood work came back good. Immunity and all other numbers are in the normal range. Except hemoglobin-still in the 90's, which is ok for myeloma patients.
The oncologist has put him back on chemo:
15mg of Revilimed - on for 21 days, off for 7 days.
20mg of dexamethazone (steriods) once a week.
Valcade injection weekly.
Plus he is taking 4mg hydromorphin for his hip pain. Every 2-3 hours. Last night was a rough night with the pain. I applied some ice cold cream to the area and it seemed to help for a few hours. But he was awake around 4am complaining from the pain. As I type, he sits beside me, saying that the other hip has begun to hurt. Perhaps he's favouring his other leg too much? Never ends with Tony. Something new - always.
Tony is upset with this combination as he feels it fatigues him. The steroids will cause 2 sleepless nights. However, he began on Saturday morning and slept pretty good Saturday night!
Not looking forward to the weekly injections. This means an all day event back at Humber River Hospital.
Today we visited his urologist. This is a follow up to those neuphrostomy tubes in his kidneys. Remember those? Well, they need to be removed within 6 months. (it's been longer due to Stem Cell Transplant recovery time) If waiting too long, they become more difficult to remove. She has decided to put him under to remove in case she needs to operate to remove them. That happens on May 29. Again, Tony continues to keep me busy.
This Thursday we meet his original Dr.K. from Humber River. I look forward to seeing her. We both do! She was sooooo nice. So positive. She went on maternity leave. When she left, Tony's health just spiraled downward. She will be monitoring the weekly valcade injection. Closer to home, which is better. Afterwards we head downtown to Princess Margaret Hospital for his CT scan. This will be his new base for any future findings. This should tell us the success of the stem cell transplants and treatment. This is to ensure that his lymph-nodes are back to normal and tumors are completely gone.
I thank you all for inquiring about Tony's status during these past 12 days. It warms our hearts to hear from you all. It truly does.
Since my last blog, Tony's diarrhea continued and he just kept losing weight. His lowest weight was 200.5 lbs. He looks very weak and just can't hold anything in. We didn't get a call from the hospital with regards to his stool sample, so we assumed c-diff was negative.
May 8th we saw his oncologist at Princess Margaret. She shared with us that they received a verbal confirmation that Tony's stool sample was positive for C-Diff.....which explains the diarrhea, loss of appetite and continued weakness. His left hip has been an ongoing issue. He walks like a senior. This is from over doing it. Too much walking. The x-rays didn't show any breakage which is good. Blood work came back good. Immunity and all other numbers are in the normal range. Except hemoglobin-still in the 90's, which is ok for myeloma patients.
The oncologist has put him back on chemo:
15mg of Revilimed - on for 21 days, off for 7 days.
20mg of dexamethazone (steriods) once a week.
Valcade injection weekly.
Plus he is taking 4mg hydromorphin for his hip pain. Every 2-3 hours. Last night was a rough night with the pain. I applied some ice cold cream to the area and it seemed to help for a few hours. But he was awake around 4am complaining from the pain. As I type, he sits beside me, saying that the other hip has begun to hurt. Perhaps he's favouring his other leg too much? Never ends with Tony. Something new - always.
Tony is upset with this combination as he feels it fatigues him. The steroids will cause 2 sleepless nights. However, he began on Saturday morning and slept pretty good Saturday night!
Not looking forward to the weekly injections. This means an all day event back at Humber River Hospital.
Today we visited his urologist. This is a follow up to those neuphrostomy tubes in his kidneys. Remember those? Well, they need to be removed within 6 months. (it's been longer due to Stem Cell Transplant recovery time) If waiting too long, they become more difficult to remove. She has decided to put him under to remove in case she needs to operate to remove them. That happens on May 29. Again, Tony continues to keep me busy.
This Thursday we meet his original Dr.K. from Humber River. I look forward to seeing her. We both do! She was sooooo nice. So positive. She went on maternity leave. When she left, Tony's health just spiraled downward. She will be monitoring the weekly valcade injection. Closer to home, which is better. Afterwards we head downtown to Princess Margaret Hospital for his CT scan. This will be his new base for any future findings. This should tell us the success of the stem cell transplants and treatment. This is to ensure that his lymph-nodes are back to normal and tumors are completely gone.
LAST WORDS......
This coming June 22, 2014, Princess Margaret Hospital is hosting a
walk. I plan on joining many supporters
and warriors fighting this terrible disease.
I’m asking for your support during this event, either by walking with me
or donating to this cause. Princess
Margaret Hospital has been my saving grace.
My strength to continue on wards is still there.
My hope to find a cure is even greater.
The scientists and doctors are truly working very hard to
find this cure. At best, I would be
happy with a treatment to simply make this disease a chronic battle and not the
alternative. So, please find it in your heart to give to a personal worthy
cause.
Please visit: www.mm5kwalk.ca
My team name is: GEMM
Team
THANK YOU!
Tony & Mary
Wednesday, April 30, 2014
Day 52 - Not much happening
These past few days, Tony continues to lose weight. Actually, he's up then down. Up, then down. He is thinner than the day we got married. (30 years ago this week-WOW)
Appetite is still not normal.
Food is not tasting right.
His stomach is doing odd things. We had been given a kit for stool testing a while back, so today he sent in a sample. We shall see what those results show. I'm wondering if he still has C-Diff.
Drinking is minimal. I'm trying everything. Lately, I'm forcing Boost energy drinks just so he can get some calories and vitamins in. Better than nothing.
He has begun to make the odd appearance at the office. Not really working. Cannot stay focused for very long. He began driving on his own on April 21.
Tomorrow, he will be making a trip to Princess Margaret Hospital on his own. First time ever. I'm nervous. Downtown driving can be a parking lot. I hope he can stay focused long enough to get back home safely.
He is getting an x-ray and his bone strengthening medication. Appointment with the oncologist is next week, I believe.
My life has been overwhelming lately. Trying to play "catch up" with everything on my plate.
One day at a time.
HEY! Have you registered or donated to the Walk yet?
Find a walkers name and help support us!
http://pmhf3.akaraisin.com/pledge/Team/Home.aspx?seid=7497&mid=10&tid=68713
Appetite is still not normal.
Food is not tasting right.
His stomach is doing odd things. We had been given a kit for stool testing a while back, so today he sent in a sample. We shall see what those results show. I'm wondering if he still has C-Diff.
Drinking is minimal. I'm trying everything. Lately, I'm forcing Boost energy drinks just so he can get some calories and vitamins in. Better than nothing.
He has begun to make the odd appearance at the office. Not really working. Cannot stay focused for very long. He began driving on his own on April 21.
Tomorrow, he will be making a trip to Princess Margaret Hospital on his own. First time ever. I'm nervous. Downtown driving can be a parking lot. I hope he can stay focused long enough to get back home safely.
He is getting an x-ray and his bone strengthening medication. Appointment with the oncologist is next week, I believe.
My life has been overwhelming lately. Trying to play "catch up" with everything on my plate.
One day at a time.
HEY! Have you registered or donated to the Walk yet?
Find a walkers name and help support us!
http://pmhf3.akaraisin.com/pledge/Team/Home.aspx?seid=7497&mid=10&tid=68713
Sunday, April 20, 2014
Happy Easter to all our family & friends
As I type, Easter is over.
It was a great break. Tony is eating more. Actually enjoyed eating. Actually, he woke up saying he was hungry. Very good sign. His taste buds are finally waking up!
He walked quite a bit on Saturday and felt ok the next day. It's a very good sign.
May 8th is his next follow up appointment with his oncologist.
May 15th they are doing a CT scan. I'm not worried. I'm sure any speckle is completely gone. I guess this will be their new baseline for future CT scans.
I've begun to fund raise!
I'm hoping that those who have committed to the walk are going to pull up their sleeves and help raise lots of money for this horrible disease.
Those who wish to join the walk----HURRY UP AND SIGN UP! Message me if you need help.
This Wednesday evening the team leaders are meeting to learn more about the walk. I guess that's when the teams really begin to reach their goal.
So, if you haven't already joined or donated, please do so now. Below is our team page. GEMM Team.
Click on "join team" or "donate" or "register". We are $10 away from being in 2nd place!
IT'S EASY!
Thanks for following everyone!
Buona Pasqua a tutti!
HERE'S OUR TEAM PAGE:
http://pmhf3.akaraisin.com/pledge/Team/Home.aspx?seid=7497&mid=10&tid=68713
It was a great break. Tony is eating more. Actually enjoyed eating. Actually, he woke up saying he was hungry. Very good sign. His taste buds are finally waking up!
He walked quite a bit on Saturday and felt ok the next day. It's a very good sign.
May 8th is his next follow up appointment with his oncologist.
May 15th they are doing a CT scan. I'm not worried. I'm sure any speckle is completely gone. I guess this will be their new baseline for future CT scans.
I've begun to fund raise!
I'm hoping that those who have committed to the walk are going to pull up their sleeves and help raise lots of money for this horrible disease.
Those who wish to join the walk----HURRY UP AND SIGN UP! Message me if you need help.
This Wednesday evening the team leaders are meeting to learn more about the walk. I guess that's when the teams really begin to reach their goal.
So, if you haven't already joined or donated, please do so now. Below is our team page. GEMM Team.
Click on "join team" or "donate" or "register". We are $10 away from being in 2nd place!
IT'S EASY!
Thanks for following everyone!
Buona Pasqua a tutti!
HERE'S OUR TEAM PAGE:
http://pmhf3.akaraisin.com/pledge/Team/Home.aspx?seid=7497&mid=10&tid=68713
Tuesday, April 15, 2014
Minor Setback
Dinner last night did not sit well with Tony. He continues to lose weight (4 more pounds) and not eating and not drinking. I'm home all day with him to enforce eating and drinking.
I am very frustrated and I can only imagine how he feels :(
O.M.G.!
Sunday, April 13, 2014
Been very busy
I've been very busy and haven't had a chance to myself at all these past 7 days.
I am at the office, on a Sunday, at 7:30pm. YUP
Tony's follow up appointment last Thursday went well. We had to depend on a friend to drive him downtown. His hemoglobin was at 98. He was reminded again about how close he was to being removed from the stem cell transplant list. Miracles do happen. We need to believe. Compared to where he was back in August to today, yes, he is a miracle.
He has lost a lot of weight. He is down about 45 pounds now from being diagnosed. His appetite is still challenging. We are short staffed at work, so I haven't been home much, therefore, no one is there to push him to eat or drink. He says he drinks and barely eats......
His next follow up appointment is in 30 days. At that time, or around that time, they will be doing a full body CT scan to record a base towards future scans.
He is beginning his next routine.....back on the Revlimed. I believe 10mg. We shall see how that contributes towards his neuropathy (numbness) He still has it on one leg (right side) and both feet around the toes.
I am at the office, on a Sunday, at 7:30pm. YUP
Tony's follow up appointment last Thursday went well. We had to depend on a friend to drive him downtown. His hemoglobin was at 98. He was reminded again about how close he was to being removed from the stem cell transplant list. Miracles do happen. We need to believe. Compared to where he was back in August to today, yes, he is a miracle.
He has lost a lot of weight. He is down about 45 pounds now from being diagnosed. His appetite is still challenging. We are short staffed at work, so I haven't been home much, therefore, no one is there to push him to eat or drink. He says he drinks and barely eats......
His next follow up appointment is in 30 days. At that time, or around that time, they will be doing a full body CT scan to record a base towards future scans.
He is beginning his next routine.....back on the Revlimed. I believe 10mg. We shall see how that contributes towards his neuropathy (numbness) He still has it on one leg (right side) and both feet around the toes.
Thursday, April 3, 2014
Day 25 post Stem Cell Transplant
Today was a hectic day at Princess Margaret for Tony.
Main Floor for blood work.
4th Floor clinic for Bone strengthening medication via IV.
Down to 2nd floor to see Dr. Chen.
Back up to clinic on 4th to get hooked up.
Back down to see Dr. Chen again.
Down the hall to see the hospital dentist for a checkup.
Back up to 4th floor to get disconnected.
WOW. Let me tell you that by the end of the day (7 hours) Tony was very fatigued. Lots of walking and talking and sitting.
Results from his blood work at Headwaters Hospital showed all negative.
Results from his hickman line taken out Monday showed negative.
Um, what is going on? In the meantime, he continues taking the antibiotics. Last night his temperature hit 38.3. Still low grade. They did more blood work.
GREAT news: He ate LOTS at dinner tonight! Good sign. Ribs, potatoes, carrots & salad. When I cut open the watermelon after dinner, it smelled like summer. It was delicious and he ate quite a few slices. A substantial amount considering his appetite has been a bite here and a bite there. Things are looking up.
-We ran into the wife of his roommate from the first stem cell transplant from December. She was telling us that her husband is doing much better. He hired a personal trainer to help get some of his muscles and energy back. Tony was glad to hear that.
-We found a dime on the floor while waiting for the doctor. A sign that an angel is with you. (Google it. It's true) So I loudly said hi to my mom and Uncle Tony.
-We ran into someone we met at our MM support group meeting. His wife was getting her cells harvested today.
-We ran into someone ringing that bell. You know, the one that tells everyone you just finished your chemo treatment. She was bald and beautiful. She rang that bell VERY LOUD. I'm sure everyone heard it throughout those halls. And, she was there with about 8-10 people supporting her. I offered to take group shots of them all together. I had tears in my eyes. It was wonderful.
-We met a couple who looked so tired today. I asked what they were there for: testicular cancer. A young man. A caring woman by his side. Both testicles removed and going through radiation. He is allergic to the radiation, so they are dealing with that today.
So, at the end of the day, sometimes, when you think you have it bad.......maybe you don't.
Sometimes, we need little reminders to enjoy life. Take it slow. Breath it in. Watch for those dimes!
Main Floor for blood work.
4th Floor clinic for Bone strengthening medication via IV.
Down to 2nd floor to see Dr. Chen.
Back up to clinic on 4th to get hooked up.
Back down to see Dr. Chen again.
Down the hall to see the hospital dentist for a checkup.
Back up to 4th floor to get disconnected.
WOW. Let me tell you that by the end of the day (7 hours) Tony was very fatigued. Lots of walking and talking and sitting.
Results from his blood work at Headwaters Hospital showed all negative.
Results from his hickman line taken out Monday showed negative.
Um, what is going on? In the meantime, he continues taking the antibiotics. Last night his temperature hit 38.3. Still low grade. They did more blood work.
GREAT news: He ate LOTS at dinner tonight! Good sign. Ribs, potatoes, carrots & salad. When I cut open the watermelon after dinner, it smelled like summer. It was delicious and he ate quite a few slices. A substantial amount considering his appetite has been a bite here and a bite there. Things are looking up.
-We ran into the wife of his roommate from the first stem cell transplant from December. She was telling us that her husband is doing much better. He hired a personal trainer to help get some of his muscles and energy back. Tony was glad to hear that.
-We found a dime on the floor while waiting for the doctor. A sign that an angel is with you. (Google it. It's true) So I loudly said hi to my mom and Uncle Tony.
-We ran into someone we met at our MM support group meeting. His wife was getting her cells harvested today.
-We ran into someone ringing that bell. You know, the one that tells everyone you just finished your chemo treatment. She was bald and beautiful. She rang that bell VERY LOUD. I'm sure everyone heard it throughout those halls. And, she was there with about 8-10 people supporting her. I offered to take group shots of them all together. I had tears in my eyes. It was wonderful.
-We met a couple who looked so tired today. I asked what they were there for: testicular cancer. A young man. A caring woman by his side. Both testicles removed and going through radiation. He is allergic to the radiation, so they are dealing with that today.
So, at the end of the day, sometimes, when you think you have it bad.......maybe you don't.
Sometimes, we need little reminders to enjoy life. Take it slow. Breath it in. Watch for those dimes!
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