Doctor yesterday said that I am OK... just need another bone survey to make sure that all is well.
So - what did I do today?
Guess...
jc
Showing posts with label kaiser. Show all posts
Showing posts with label kaiser. Show all posts
Seven Years Out - and I am doing OK...
https://youtu.be/Z0GFRcFm-aY
Doctor yesterday said that I am OK... just need another bone survey to make sure that all is well.
So - what did I do today?
Guess...
Now I need a nap...
jc
Doctor yesterday said that I am OK... just need another bone survey to make sure that all is well.
So - what did I do today?
Guess...
jc
Day Zero +1825
Yep - one day at a time.
One scary summer down, we shall see about the future.
Now I gotta clean house...
jc
PS: Interesting note on probiotics - I emailed him and I think I will try it.
One scary summer down, we shall see about the future.
jc
PS: Interesting note on probiotics - I emailed him and I think I will try it.
City of Hope BMT reunion # 4
I love going to these, but it does take a toll.
I didn't see many kids this year, that always weighs heavy on me... So they were either in another section, or not as many kids are getting cancer.
I pray the latter.
Again, I met more WONDERFUL people there. Seems like there are more and more Multiple Myeloma patients surviving longer and longer.
Add to that, my two favorite Bone Marrow Transplant Doctors:
I even had an extra cupcake. Bern would have wanted me to.
(sigh)
I need a nap...
jc
I didn't see many kids this year, that always weighs heavy on me... So they were either in another section, or not as many kids are getting cancer.
I pray the latter.
Again, I met more WONDERFUL people there. Seems like there are more and more Multiple Myeloma patients surviving longer and longer.
Add to that, my two favorite Bone Marrow Transplant Doctors:
I even had an extra cupcake. Bern would have wanted me to.
(sigh)
I need a nap...
jc
Health update part ???
The cramps seem to have gone away, and I now realize that it is important to keep up with my vitamins.
Last week had my ear sliced up to get rid of some basal cell stuff. They had burned it off and biopsied it in July, but now they wanted to really get at it.
Well they did.
Last week had my ear sliced up to get rid of some basal cell stuff. They had burned it off and biopsied it in July, but now they wanted to really get at it.
Well they did.
Well that was almost two weeks ago, and it is starting to hurt a bit. I hope it isn't infected, but it is pretty hard to keep a band aid on it , and the Neosporin just doesn't cover everything.
I do look like Les Nessman, though.
jc
Hubris - I feel thy sting...
Well, what can I say.
My battle with Multiple Myeloma and the after affects, has brought up my first big scare.
Yesterday, I went to the ER with a 103 fever and labored breathing. If it weren't for some pesky women insisting that I go to the ER (and not wait for an appointment) it could have been much worse.
Kaiser got me in, took blood and x-rays right away. Then they put a bag of fluids in me, as well as an initial dose of anti-biotics.
I am taking DOXYCYCLINE for the pneumonia, and I am feeling MUCH better today.
This is a setback, as I was getting fairly good stamina from the gym. Not that I can't get it back, but it will take even longer to get back to my pre-cancer levels of stamina.
And we are having such lovely weather outside, I am a bit pissed that I can't go out and enjoy it.
jc
My battle with Multiple Myeloma and the after affects, has brought up my first big scare.
Yesterday, I went to the ER with a 103 fever and labored breathing. If it weren't for some pesky women insisting that I go to the ER (and not wait for an appointment) it could have been much worse.
Kaiser got me in, took blood and x-rays right away. Then they put a bag of fluids in me, as well as an initial dose of anti-biotics.
I am taking DOXYCYCLINE for the pneumonia, and I am feeling MUCH better today.
This is a setback, as I was getting fairly good stamina from the gym. Not that I can't get it back, but it will take even longer to get back to my pre-cancer levels of stamina.
And we are having such lovely weather outside, I am a bit pissed that I can't go out and enjoy it.
jc
Bone Marrow report
YOUR MARROW IS CLEAR WITHOUT MYELOMA.What does it mean?
FINAL REPORT:
1. MILD PLASMACYTOSIS (3%).
2. NO EVIDENCE OF INCREASED BLASTS, CLONALITY, OR LYMPHOPROLIFERATIVE DISORDER BY EITHER MORPHOLOGY OR FLOW CYTOMETRY.
3. MINIMAL NORMOCYTIC AND NORMOCHROMIC ANEMIA.
4. 1+ (OF 6) IRON STORES WITH MINIMAL FOCAL INCORPORATION OF IRON INTO SIDEROBLASTS AND NO RING SIDEROBLASTS.
Comment: Kappa and lambda light chain immunoperoxidase stains performed on blocks (A1, B1) show a polyclonal distribution of light chain staining in plasma cells. Deeper sections into block (A1) after decalcification also reveal more intact architecture with no evidence of plasma cell dyscrasia.
TL
I'm good for now!
I need a nap...
jc
Health update
I have been busy with appointments this week -- three and it is only Wednesday!
First was with Dr. Lee. My white blood count is still low -- OK considering that I don't have fully functioning bone marrow and am taking Thalomid. Still, the new (lower) strength Thalomid should help. We discussed the Aredia infusions, and decided that we should get a bone density scan done. Other than that it was "eat less carbs, more veggies, loose weight, bla bla bla". Yea, I am still quite overweight, but the meds will either make me gain weight or go anorexic. Got the fat side of that coin toss.
The bone density scan was scheduled for later that day at the new facility on La Palma, next to Fry's. Pretty simple procedure. Just that holding still on a slab of ice cold steel threw my back into spazams of muscular revolt. Give me five minutes to settle down, and I can do it, but it takes a lot of effort to relax the back and get "Zen". When he wanted to scan the hips, I had to point my toes inward and hold it for two minutes. That was NOT going to happen, as my toes never have pointed anywhere other that 11 and 2 o'clock. So we scanned one thigh at a time.
When the tech looked at my back, he could only find 4 vertebra. I have had one whole spinal vertebra disappear! Man, that realy messed with his brain. I have 1, 2, mushyblob, 5.
Yea, I can feel it, too.
Today I went up to the City of Hope for my follow up study on chemo brain. Man, that place is humming with construction! After being beat between the ears (yes, it is rough on the grey matter), I went and had a Tommy's Burger (sorry Dr. Lee). I had forgotten how good the chili was, and how meh the hamburger is.
Oh, and I get a bone marrow biopsy next week. Joy.
Well, it is now tomorrow, I better get into bed...
jc
Quick update
I have been busy since the girls got back into school. I am actively working on setting up a routine, to keep me going and keep me sane.
I try to go to the YMCA on Monday, Wednesday, and Friday. Ride the bike for 30 minutes (usually about 5 miles) then come home and putter around the house. If I sit down, there goes the inertia.
On "down days" I try to keep up with my reading.
I have been to Kaiser Sunset for an appointment with the BMT specialist Dr. Sahibi. I got a flu shot, whooping cough shot, and 9 vials of blood. Things still look good. She did change my Thalidomide from 100 to 50 because of my toes turning into unfeeling stumps. I must say, that the feeling is coming back, and it is a great comfort. The fingers still are numb, but you take the slightly bad to conquer the truly horrific.
Last weekend we had the girls cousins here -- Jay and Alana. Jay can come over any time. Alana needs to calm down and focus on what needs to be done. Five times I asked her to not go in the grass (doggie land mines) and six times she went out there. She doesn't like time outs.
I still get worn out (like now) and I don't hesitate to nap. Sometimes it is good to recognize your limits and make peace with them.
Well, I have to hurry up and relax so we can do Disneyland...
jc
I try to go to the YMCA on Monday, Wednesday, and Friday. Ride the bike for 30 minutes (usually about 5 miles) then come home and putter around the house. If I sit down, there goes the inertia.
On "down days" I try to keep up with my reading.
I have been to Kaiser Sunset for an appointment with the BMT specialist Dr. Sahibi. I got a flu shot, whooping cough shot, and 9 vials of blood. Things still look good. She did change my Thalidomide from 100 to 50 because of my toes turning into unfeeling stumps. I must say, that the feeling is coming back, and it is a great comfort. The fingers still are numb, but you take the slightly bad to conquer the truly horrific.
Last weekend we had the girls cousins here -- Jay and Alana. Jay can come over any time. Alana needs to calm down and focus on what needs to be done. Five times I asked her to not go in the grass (doggie land mines) and six times she went out there. She doesn't like time outs.
I still get worn out (like now) and I don't hesitate to nap. Sometimes it is good to recognize your limits and make peace with them.
Well, I have to hurry up and relax so we can do Disneyland...
jc
Cancer update
Last week I had three trips to Kaiser -- one infusion and two doctor appointments.
Infusion went well, as usual. This time, though, the aridia really hit me afterwards. I never experienced the fatigue before, so it was new.
Dr. Sahebi (Kaiser BMT specialist) was pleased with my progress, and took me off another pill. I still have to take the Thalomid, but that's OK. Now it's just vitamins and supplements.
Dr. Lee (Kaiser Oncology) was pleased with my progress too, but was concerned with my white blood count. I get another CBC next week to check on that. He also wants me to take B-12 for my blood. Perhaps I will just eat more steaks.
Toes still tingle, fingers still a bit numb, but that comes with the nerve damage and Thalomid. Balance is a challenge when you can't feel your toes to make the billions of micro corrections you make when balancing.
Cramps are still there, and I can feel it when my feet get cold... it gets painful when you are standing still and your feet cramp up. Looks real bad when one falls over with foot cramps and bad equilibrium.
Well, I need to get dinner started...
jc
Infusion went well, as usual. This time, though, the aridia really hit me afterwards. I never experienced the fatigue before, so it was new.
Dr. Sahebi (Kaiser BMT specialist) was pleased with my progress, and took me off another pill. I still have to take the Thalomid, but that's OK. Now it's just vitamins and supplements.
Dr. Lee (Kaiser Oncology) was pleased with my progress too, but was concerned with my white blood count. I get another CBC next week to check on that. He also wants me to take B-12 for my blood. Perhaps I will just eat more steaks.
Toes still tingle, fingers still a bit numb, but that comes with the nerve damage and Thalomid. Balance is a challenge when you can't feel your toes to make the billions of micro corrections you make when balancing.
Cramps are still there, and I can feel it when my feet get cold... it gets painful when you are standing still and your feet cramp up. Looks real bad when one falls over with foot cramps and bad equilibrium.
Well, I need to get dinner started...
jc
Health update
Well, I saw Dr. Lee yesterday, and all seems to be going well.
The bone marrow biopsy came back as generally OK. He noted some elevated numbers in my IGD, but nothing else -- which seems like an anomaly and not much for concern. Yet.
He gave me the surgical pathology report, and while I am not a doctor (or even play on on TV) I can read this:
The bone marrow biopsy came back as generally OK. He noted some elevated numbers in my IGD, but nothing else -- which seems like an anomaly and not much for concern. Yet.
He gave me the surgical pathology report, and while I am not a doctor (or even play on on TV) I can read this:
NO EVIDENCE OF MONOCLONALITY IN B-CELL POPULATION
I take that as something good.
My visits to the chemo lab for AREDIA are to be cut in half, and I don't see Dr. Lee until next January.
Generally good, eh?
My back still has its days, and my bone marrow is only at 50% or so. If I get sick (something I don't do very often) it will take me much longer to get better. I really notice that I notice faces, but absolutely blank out with names (very awkward, socially). I am quite stiff when it comes to movement, except when standing still: my back does an involuntary wiggle that seems like it is under/over correcting itself. My stamina is OK for a while, but it takes me much longer to recover. I seem to be just barely stable -- my balance is just not as balanced as before. If I do get off balance, I don't have the quick (or even automatic) muscle response to correct it in time. Not good when dodging beagle pups.
All told, I think I am doing quite well. Considering that in March of 2008 I could only walk with a walker, and could not get out of a bed without horrific pains in the back, I think that I am doing VERY well. Just wish these 100 little things would hurry up and stop making me feel older than I am.
Gotta go clean up puppy stuff --
jc
Only 10 vials today!
After going to the beach with the kids today, I took Bern over to Kaiser for a blood draw.
Ha! I beat him 10 vials to 2!
Ya know, you would think that going on a Sunday late afternoon would be great -- no lines and you get right in. Well, we got right in, but there was only one receptionist (there is usually at least 2) and only one lab tec (the place is usually crawling with them). So, with only one person in front of us, it seemed to take forever. Then there was a problem with Bern's blood draw order, computer lock up, computer restart, consultation with others, and finally, two vials. Esh.
One year ago...
... I was flat on my back in a hospital bed.
All anyone knew is that I couldn't walk, and had "something strange" on my MRI of my back.
It would take several more days before I was diagnosed with Multiple Myloma (IGD).
During that time, I had to have help doing even the most basic of all functions. Modesty and pride go out with the hospital gown.
I was fitted with a back brace, that kept me together for about six months. I was so glad to progress away from that.
Since then I have had three rounds of radiation, several different chemo therapies, and the big whopper, the massive chemo with stem cell regeneration of my bone marrow that happened at the City of Hope.
Lasting effects? Yea, a few.
Looking forward to another few thousand days ahead.
jc
All anyone knew is that I couldn't walk, and had "something strange" on my MRI of my back.
It would take several more days before I was diagnosed with Multiple Myloma (IGD).
During that time, I had to have help doing even the most basic of all functions. Modesty and pride go out with the hospital gown.
I was fitted with a back brace, that kept me together for about six months. I was so glad to progress away from that.
Since then I have had three rounds of radiation, several different chemo therapies, and the big whopper, the massive chemo with stem cell regeneration of my bone marrow that happened at the City of Hope.
Lasting effects? Yea, a few.
- After a year of various forms of sitting on my ass, I have little momentum.
- I am up to 271 pounds, the heaviest I have ever been ( in April I was below 220, and had to use a belt to keep my pants up).
- I have some memory lapses -- also known as chemo brain.
- My fine motor skills are very shaky.
- My legs swell up in the evening, so when I take off my socks for the night it looks rather shocking.
- I have tattoos, but they are the remains of the radiation treatment.
- I seem to have difficulty hearing things.
- I smell smoke, a nice BBQ kind of smoke (the doctors are puzzled by this one).
- My back is stiff (see the second item), and twitches when I stand still or lay down for the night.
- I have a scar on my chest where the Hickman catheter was inserted in my chest and neck for 6 or so weeks.
- I take chemo pills every night, and will have to for the rest of my life. A 28 day supply costs Kaiser $5200.
- Family and friends. Without them I would be long gone. Each well wish and prayer counted.
- I can park in the blue spots (at least until June).
- New perspectives, new attitudes.
- I can pick up the girls again.
- My wife.
Looking forward to another few thousand days ahead.
jc
Some Kaiser Konfusion...
Today was spent on the phone or waiting for phone calls. That's OK, yesterday was busy, and I needed some rest.
Today's question was about my back. Specifically, my 5th lumbar. That's the one that has collapsed, starting the chain of events that has led us to this point. This cancer robbed my spine of it's calcium, thus making it brittle, mushy, and full of holes. One of the tests I took for the Bone Marrow Transplant (BMT) showed that bad vertebrae.
The BMT team up in LA was not happy. Not at all. They called me to get the story. I told them that DR. So (yes, that is his name) said it was OK... in fact I go to Disneyland (AHHHH!) and do some rides (NOT THE TEA CUPS!) and in fact I don't have my brace on right now (CALL 911, THIS GUY IS GONNA CRIPPLE HIMSELF!).
Sheesh, I have a mom, wife, grandma, aunt, and now a BMT coordinator that watches over my behavior.
Cancer sucks.
After a better part of the day being eaten up with this back and fourth, they did get to talk to Dr. So, who calmed them down, and they are happy again.
Some of my appointments have moved around, so if you need an updated calender, let me know.
I'm tired, I'll take a nap...
jc
Today's question was about my back. Specifically, my 5th lumbar. That's the one that has collapsed, starting the chain of events that has led us to this point. This cancer robbed my spine of it's calcium, thus making it brittle, mushy, and full of holes. One of the tests I took for the Bone Marrow Transplant (BMT) showed that bad vertebrae.
The BMT team up in LA was not happy. Not at all. They called me to get the story. I told them that DR. So (yes, that is his name) said it was OK... in fact I go to Disneyland (AHHHH!) and do some rides (NOT THE TEA CUPS!) and in fact I don't have my brace on right now (CALL 911, THIS GUY IS GONNA CRIPPLE HIMSELF!).
Sheesh, I have a mom, wife, grandma, aunt, and now a BMT coordinator that watches over my behavior.
Cancer sucks.
After a better part of the day being eaten up with this back and fourth, they did get to talk to Dr. So, who calmed them down, and they are happy again.
Some of my appointments have moved around, so if you need an updated calender, let me know.
I'm tired, I'll take a nap...
jc
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