Looks like I might be progressing to a new stage.
Heartburn is more common and I now think pepperoni is too spicy. Pathetic.
I also am noticing a new form of discoloration on the nails,
The black is fading away but the true cuticle and lunula are turning a chalky white.
I see my local oncologist on Wednesday so it will definitely be brought up.
Pain in the hands is sporadic but really intense.
Pain has also moved to my feet and knees but that could just be the.plantar fasciitis I've always had.
Hard to tell what causes what.
Monday, October 24, 2011
Wednesday, October 12, 2011
Today's visit - good news
Today's visit at Dana Farber was pretty good.
My levels continue to slowly rise and I have hit my 90 days out from transplant.Woo hoo!!!!
I can now somewhat expand my eating options (aka... pepper, i missed you so) and even order in food.
Additionally, my tacrolimus anti-rejection drug is being reduced from 1.5mg to 1mg which means I should see a reduction in hand tremors.
Biggest news is with the eyes. It is definitely not GVHD. If it were, things would be steadily getting worse and they are not. Sometimes it is not bad. Other days, a crowbar is needed to open the eyes. In any case, no GVHD for now which is huge.
My levels continue to slowly rise and I have hit my 90 days out from transplant.Woo hoo!!!!
I can now somewhat expand my eating options (aka... pepper, i missed you so) and even order in food.
Additionally, my tacrolimus anti-rejection drug is being reduced from 1.5mg to 1mg which means I should see a reduction in hand tremors.
Biggest news is with the eyes. It is definitely not GVHD. If it were, things would be steadily getting worse and they are not. Sometimes it is not bad. Other days, a crowbar is needed to open the eyes. In any case, no GVHD for now which is huge.
Sunday, October 9, 2011
The eyes have it
Woke up this morning and my eyes were practically welded shut. After prying them open, I noticed the face and upper/lower lids were very swollen. I've had this before but it seems to getting worse. Something to talk about when I go to Dana Farber this Wednesday. I've been reading on the web about this and it can get really nasty. If treated with steroids, my face will get really bloated plus a chance of cataracts or glaucoma. Backing away from any more web searches till I know more. Too much information can be a bad thing.
Wednesday, September 28, 2011
Latest update from Dana Farber
I went to Dana Farber today and the the news is largely good.
Blood levels are doing well.
My only new thing is my eyes and face are getting puffy.
The nurse practitioner I spoke to is not 100% on the cause.
It could be graft versus host or I could simply be developing allergies after the transplant.
She is evaluating my drug levels and will give a call tomorrow based on the results.
Depending on the results, I may be getting my tacrolimus dosage lowered.
That will be nice because it will help lower my tremors.
Blood levels are doing well.
My only new thing is my eyes and face are getting puffy.
The nurse practitioner I spoke to is not 100% on the cause.
It could be graft versus host or I could simply be developing allergies after the transplant.
She is evaluating my drug levels and will give a call tomorrow based on the results.
Depending on the results, I may be getting my tacrolimus dosage lowered.
That will be nice because it will help lower my tremors.
Sunday, September 18, 2011
News update
Hi everyone,
I haven't updated in a bit because there hasn't been much new to report.
Pain is gone now which is always nice.
Finger nails are beginning to turn black. Between that and the bald head, I'm beginning go goth. :)
Tremors are sill there but they are something I will have to live with while on the medications.
Hair is continuing to jump ship. Eyebrows and eyelashes are getting very thin for example.
The biggest news is that I got the Hickman line removed from my chest.
I haven't updated in a bit because there hasn't been much new to report.
Pain is gone now which is always nice.
Finger nails are beginning to turn black. Between that and the bald head, I'm beginning go goth. :)
Tremors are sill there but they are something I will have to live with while on the medications.
Hair is continuing to jump ship. Eyebrows and eyelashes are getting very thin for example.
The biggest news is that I got the Hickman line removed from my chest.
Friday, August 26, 2011
Update to todays Dana Farber visit
I got a call from the Nurse Practitioner...
My chemical levels are a bit high so they are having me lower the tacrolimus daily dosage from 3 mg twice a day down to 2 mg twice a day.
The theory is that the tremors may stop or at least decrease in frequency with the dosage lowered.
It would be nice.
I was also asked to move from taking oxycodone's to 600mg ibuprofen on the idea that pain will go down as inflamation decreases.
I'm not really sold on the idea that ibuprofen will do much but it is a wait and see I guess.
My chemical levels are a bit high so they are having me lower the tacrolimus daily dosage from 3 mg twice a day down to 2 mg twice a day.
The theory is that the tremors may stop or at least decrease in frequency with the dosage lowered.
It would be nice.
I was also asked to move from taking oxycodone's to 600mg ibuprofen on the idea that pain will go down as inflamation decreases.
I'm not really sold on the idea that ibuprofen will do much but it is a wait and see I guess.
Dana Farber visit of the week
Went in for the usual blood draw and a visit with the nurse practitioner.
I don't have the exact counts in front of me but they are looking very good according to the nurse.
She apologized regarding the hand tremors but re-affirmed that my immuno-suppression drug tacrolimus was the source. We wont be looking to get off that until at least my 100th day post transplant.
The cuticles on each nail are starting to hyper-pigment to the point they are turning black.Nurse says the nails could remain black a very long time and that it is even possible to lose the nails. Lovely.
There is concern about Graft Versus Host Disease and my joint pain. If one of the blood levels comes back high, I may get steroids to help.
My doctor decided to not do steroids last week but may change his mind based on this weeks number.
Should know later today.. I hope.
I don't have the exact counts in front of me but they are looking very good according to the nurse.
She apologized regarding the hand tremors but re-affirmed that my immuno-suppression drug tacrolimus was the source. We wont be looking to get off that until at least my 100th day post transplant.
The cuticles on each nail are starting to hyper-pigment to the point they are turning black.Nurse says the nails could remain black a very long time and that it is even possible to lose the nails. Lovely.
There is concern about Graft Versus Host Disease and my joint pain. If one of the blood levels comes back high, I may get steroids to help.
My doctor decided to not do steroids last week but may change his mind based on this weeks number.
Should know later today.. I hope.
Friday, August 19, 2011
Today's Dana Farber visit
The levels are continuing to improve.
White Blood Cell Count : 7.5 Reference Range: 3.8 to 9.2
Hematocrit Count : 35.5 Reference Range: 38.4 to 48.2 (currently low)
Platelet Count : 138 Reference Range: 155 to 419 (currently low)
My hands continue to tremor pretty intensely. A good object lesson on this was that I had a really hard time putting toothpaste on my toothbrush. Wow.. Practically had to pin my arms to my chest to make progress. The tremors are a side effect of one of my meds and should go away once I'm done with them. Of course, that will take about a month and the tremors are likely to get stronger.
The all-around itchiness and intense joint pain are apparently precursors to graft versus host disease. I have oxycodone for the pain and, bless her, the nurse supplied me with better meds for the itches. Using steroids to alleviate the problems was discussed but it is dangerous to do this close to my transplant date.Out of all this, the itch is the worst!
White Blood Cell Count : 7.5 Reference Range: 3.8 to 9.2
Hematocrit Count : 35.5 Reference Range: 38.4 to 48.2 (currently low)
Platelet Count : 138 Reference Range: 155 to 419 (currently low)
My hands continue to tremor pretty intensely. A good object lesson on this was that I had a really hard time putting toothpaste on my toothbrush. Wow.. Practically had to pin my arms to my chest to make progress. The tremors are a side effect of one of my meds and should go away once I'm done with them. Of course, that will take about a month and the tremors are likely to get stronger.
The all-around itchiness and intense joint pain are apparently precursors to graft versus host disease. I have oxycodone for the pain and, bless her, the nurse supplied me with better meds for the itches. Using steroids to alleviate the problems was discussed but it is dangerous to do this close to my transplant date.Out of all this, the itch is the worst!
Thursday, August 18, 2011
Just when you think things are going your way - wrong
Starting last night, the joint came back with a vengeance.
To say it hurt is an understatement. Even with oxycodone helpers, the pain was still very much there.
Okay.. I can deal with the pain but now we have a brand new symptom.
My hands wont stop shaking and they feel a little tingly.
I sent a message to my doctor and nurse practitioner but no response back yet.
May not really be worth chasing them today anyway since I go to Dana Farber tomorrow for my weekly checkup.
Hope this nothing. I really don't need another complication.
Wednesday, August 10, 2011
Doctors visit - discharge day +11
Went to Dana Farber for blood work and a visit with the doctor.
Over-all, things went pretty well.
White cell and platelet counts continue to rise.
The hematocrit levels went down a little bit but they tend to fluctuate a bit.
The doctor states I am on track and numbers are about where they should be.
If things continue as they are now, I will have to go back on a monthly basis instead of weekly.
That would be great!
Over-all, things went pretty well.
White cell and platelet counts continue to rise.
The hematocrit levels went down a little bit but they tend to fluctuate a bit.
The doctor states I am on track and numbers are about where they should be.
If things continue as they are now, I will have to go back on a monthly basis instead of weekly.
That would be great!
Saturday, August 6, 2011
Had first doctors office follow-up on Friday
The visit was with a nurse practitioner, not the doctor, but things went well.
My blood counts are exactly where that should be considering I am 6 days out from hospital discharge.
The white count dipped about 10 points but this is normal considering they are not being goosed by the nupragen shots.
Platelet counts are doing extremely well and whole blood counts are holding steady to a slow climb.
Energy levels are still low but my mouth sore issues are almost completely gone.
Now if I could just get my tastebuds back to normal.
My blood counts are exactly where that should be considering I am 6 days out from hospital discharge.
The white count dipped about 10 points but this is normal considering they are not being goosed by the nupragen shots.
Platelet counts are doing extremely well and whole blood counts are holding steady to a slow climb.
Energy levels are still low but my mouth sore issues are almost completely gone.
Now if I could just get my tastebuds back to normal.
Thursday, August 4, 2011
Sunday, July 31, 2011
Hospital Discharge date +1
First off, {{Glad To Be Home}} !!
First nights dinner a prime example of how screwed up my mouth is. Cathy, at my request, made her sheperds pie. Normally a favorite of mine but taste was just off. Got to admit the potato was not too bad but everything was just wrong.
It was really nice to sleep in my own bed for a change and not get nudged awake every few hours for vitals checks. Felt a little weird but trust me, I adjusted.
The worst affront from my taste bud issues was my coffee. Nooooooo!! It tasked like dark roasted formaldehyde. Come on!!
A nursing service came by this morning to show Cathy how to saline and heparin flush my lines. While she was here, asked her to remove the bandages from the line site that was removed a couple days ago.
Got to admit that hurt quite a bit but it's over.
Napped quite a bit today.
First nights dinner a prime example of how screwed up my mouth is. Cathy, at my request, made her sheperds pie. Normally a favorite of mine but taste was just off. Got to admit the potato was not too bad but everything was just wrong.
It was really nice to sleep in my own bed for a change and not get nudged awake every few hours for vitals checks. Felt a little weird but trust me, I adjusted.
The worst affront from my taste bud issues was my coffee. Nooooooo!! It tasked like dark roasted formaldehyde. Come on!!
A nursing service came by this morning to show Cathy how to saline and heparin flush my lines. While she was here, asked her to remove the bandages from the line site that was removed a couple days ago.
Got to admit that hurt quite a bit but it's over.
Napped quite a bit today.
Friday, July 29, 2011
Hospital exit date confirmed
Hi everyone,
I am pleased to confirm that I definitely will be leaving the hospital Saturday mid-day.
My levels are continuing to rise impressively which prompted the doctors to make that decision.
The next things were tasks on my part such as getting off the PSA machine that fed me morphine as well as the TPN nutritional line while I was unable to eat.
These have been done so .. Weeeaaaaaar Outa heeeeere
I am pleased to confirm that I definitely will be leaving the hospital Saturday mid-day.
My levels are continuing to rise impressively which prompted the doctors to make that decision.
The next things were tasks on my part such as getting off the PSA machine that fed me morphine as well as the TPN nutritional line while I was unable to eat.
These have been done so .. Weeeaaaaaar Outa heeeeere
Wednesday, July 27, 2011
ups and downs. - plus some mind blowing news!!
Today was a mixed bag of ups and downs
With last night's first nupragen shot, the counts have begun to climb. The significant one to rise was my white count. just two nights ago, I was at 0.027. Today it was at 1.37! That is higher than the level I walked in here with.
Having a higher white counts is very nice because I can begin to heal all the soars and gashes in my mouth!!
My energy levels are still in the toilet but it I expect those levels to rise soon.
Dr. Antin, primary doctor for Dana Farber MDS, just came in and stated that I should be able to come home in the next couple days if things progress as they have been!!
I personally think that is ambitious but I wont argue.
With last night's first nupragen shot, the counts have begun to climb. The significant one to rise was my white count. just two nights ago, I was at 0.027. Today it was at 1.37! That is higher than the level I walked in here with.
Having a higher white counts is very nice because I can begin to heal all the soars and gashes in my mouth!!
My energy levels are still in the toilet but it I expect those levels to rise soon.
Dr. Antin, primary doctor for Dana Farber MDS, just came in and stated that I should be able to come home in the next couple days if things progress as they have been!!
I personally think that is ambitious but I wont argue.
Tuesday, July 26, 2011
Lots of news today
Lots of news today.
Go the results of yesterday's MRI scan of my skull. When viewed from a specific angle, you can see a small abnormality.
Doctors were not exactly expecting to find anything so it was kind of a surprise and judged it as insignificant for the time eoing.
I got a PCA drive delivery device on my IV tree now.
all I have to do is push the button and 1 mg of morphine will go straight to my blood stream.
I cant over do it because it is computer controlled and limited to a no more than 1 dose every 7 minutes.
That is still considerable more than what I had been permitted til now.
Go the results of yesterday's MRI scan of my skull. When viewed from a specific angle, you can see a small abnormality.
Doctors were not exactly expecting to find anything so it was kind of a surprise and judged it as insignificant for the time eoing.
I got a PCA drive delivery device on my IV tree now.
all I have to do is push the button and 1 mg of morphine will go straight to my blood stream.
I cant over do it because it is computer controlled and limited to a no more than 1 dose every 7 minutes.
That is still considerable more than what I had been permitted til now.
Friday, July 22, 2011
Fast replicating cells now being impacted - part 3
To counteract the mouth sore pain, I have been given two new mouth washes.
One is just a saline and lidocane mix while the other is lidocane and benadryl.
These help to numb things up enough that I function reasonably well.
The doctors have now ordered me on what they call TPN.
This means they are now supplying critical nutrition via one of my lines by bypassing the entire digestive track.
I will continue to try eating but this ensures I have everything I need while the sores attempt to heal.
TPN should only last for a few days which is welcome because I must be attached to an IV 24hrs a days while it is active.
Thursday, July 21, 2011
Fast replicating cells now being impacted - part 2
The impact on my fast replicating cells is getting more severe as my white blood cell and platelet counts continue to drop.
This means that I am beginning to develop some serious sores in my mouth. Both my cheeks have gashes about an inch long, blood blisters are forming on the inside of my lips, and the tongue feels like it has been raked by a cheese grater.
In an adult, a normal count is about 150,000 to 450,000 platelets per micro-liter of blood. I am at 9,000.
I got a transfusion of platelets this afternoon so ideally this will bring me up enough that I don't bleed from places like the ears, noes, and eyes.
My total red blood cell count has maintained since yesterday so this is a good sign but it is still possible for it to fluctuate a bit. Today it was at 25 but if it drops below 24, I will need another transfusion.
Still exhausted beyond all belief but it is what it is. Naps are almost becoming the norm because of all the vitals checks, IV changes, blood draws, blood cultures, etc.
Antibiotics have helped quite a bit on several levels but I am officially run down and am counting the days when I can finally leave.
Wednesday, July 20, 2011
being sent off to have a CT scan of abdomen this morning
They want to confirm whether my gut pain is due to over active bacteria growth in the intestines. They will be putting me on another IV for antibiotics in addition to the two I already get. Unfortunately, because I have virtually no immune system, the antibiotics are limited in what they can do. The best they can really do is ensure it doesn't get much worse.
Tuesday, July 19, 2011
Fast replicating cells now being impacted
The effects of the chemo are now starting to show up.
My gut is now starting to roil and turn like someone put an egg beater in my intestines.
Additionally, I am starting to get sores on the inside of my mouth and a sore throat.
The hospital has me on all kinds of rinses, glutemin drinks, and other mouth care to keep things under control or lessen its effects.
The throat, mouth, and intestine are composed of fast replicating cells and those always suffer from chemo so all this is expected.. Just hurts for now.
Once my platelet counts go up, the effects should go away but that wont be for about a week or two.
My gut is now starting to roil and turn like someone put an egg beater in my intestines.
Additionally, I am starting to get sores on the inside of my mouth and a sore throat.
The hospital has me on all kinds of rinses, glutemin drinks, and other mouth care to keep things under control or lessen its effects.
The throat, mouth, and intestine are composed of fast replicating cells and those always suffer from chemo so all this is expected.. Just hurts for now.
Once my platelet counts go up, the effects should go away but that wont be for about a week or two.
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