Well,
the holiday weekend has been a blog weekend off..sorry...
we had a lovely visit with Grandma and Anut Deb....we spent some time at the Celtic festival saturday, then had a nice lunch out yesterday.
Brian is very tired. SO today I rented a couple of redbox movies, and he's just going to chill and watch tv...maybe we'll grill some burgers for dinner, and I'm going to make a pineapple upside down cake.
Tomorrow the oncology team at Lehigh Valley will be calling the University of Pennsylvania to set up an appointment with the transplant doctor there. I called them Friday and got Brian registered and got his patient number. Interesting since making the switch how several people have commented on what a better choice that is....that would have been helpful BEFORE....really never feel the need not to tell me what you are thinking....I appreciate input....and I only bite when severely pissed off...
RWJUH was off after a phone call to the medicaid and affirming the possible further delay to transplant if we tried to get approval there.
it's really so complicated without private insurance....not to diminish the complications with private insurance and believe me, there are many..I've dealt with all that last time round with the chemo.
so hopefully we'll have some new days tomorrow...will update when we do.
Monday, May 31, 2010
Friday, May 28, 2010
Friday's decisions
We had a lot of discussion and decisions to talk about yesterday.
Scott and I hashed and rehashed the whole Hershey thing.
Because while we are not very far into the process, starting over at a new hospital would no doubt lead to more delay.
But here is the bottom line. I did not like the transplant doctor from Hershey right from the beginning and my first instinct was to walk away then...should have gone with that then.
But after the discussions with his nurse and then with himself yesterday and Wednesday, it left me with no doubt at all they were not the right team for the job.
I had no confidence what so ever that they had Brian's best interest in mind. It is more then just about personality, though honestly I found little appealing about the doctor and it was difficult to fit into the room with his ego.
Certainly this not being our first dance with "specialists" I've encountered it before, but to attempt to manipulate my cooperation by telling me a easy verifiable blatant untruth....no, I lost any respect and all trust.
We have started the process over. Today after some calls to the medicaid to see about the difficulty involved in switching hospitals, we choose to pursue treatment at University of Pennsylvania. I would have liked to consider RWJUH, but the time involved to get the insurance approved for out of state was simply too risky. If it was approved and we had to appeal, it would take time we don't have.
University of Pennsylvania is rated 14th in the country and when I spoke with the Foundation of accreditation of cellular therapy yesterday, I found that they supported the US News and World Report rating system.
I hate to drive in Philly and really have no love for the city period...but we all do what we have to.
I spoke with their financial counselor today, got Brian his patient number and will be getting an appointment scheduled on Tuesday after the holiday. Since I Have the advantage of knowing what Hershey's time frame was, I can judge delays from there. But on the other hand, Brian is all ready to go and all the pre-transplant testing is all done. We hope for the best from this stage forward.
It has been emotionally exhausting the last few days with all of this turmoil and I look forward to a relaxing weekend.
This weekend is the Celtic Festival and we look forward to some good old fashion fun.
Scott and I hashed and rehashed the whole Hershey thing.
Because while we are not very far into the process, starting over at a new hospital would no doubt lead to more delay.
But here is the bottom line. I did not like the transplant doctor from Hershey right from the beginning and my first instinct was to walk away then...should have gone with that then.
But after the discussions with his nurse and then with himself yesterday and Wednesday, it left me with no doubt at all they were not the right team for the job.
I had no confidence what so ever that they had Brian's best interest in mind. It is more then just about personality, though honestly I found little appealing about the doctor and it was difficult to fit into the room with his ego.
Certainly this not being our first dance with "specialists" I've encountered it before, but to attempt to manipulate my cooperation by telling me a easy verifiable blatant untruth....no, I lost any respect and all trust.
We have started the process over. Today after some calls to the medicaid to see about the difficulty involved in switching hospitals, we choose to pursue treatment at University of Pennsylvania. I would have liked to consider RWJUH, but the time involved to get the insurance approved for out of state was simply too risky. If it was approved and we had to appeal, it would take time we don't have.
University of Pennsylvania is rated 14th in the country and when I spoke with the Foundation of accreditation of cellular therapy yesterday, I found that they supported the US News and World Report rating system.
I hate to drive in Philly and really have no love for the city period...but we all do what we have to.
I spoke with their financial counselor today, got Brian his patient number and will be getting an appointment scheduled on Tuesday after the holiday. Since I Have the advantage of knowing what Hershey's time frame was, I can judge delays from there. But on the other hand, Brian is all ready to go and all the pre-transplant testing is all done. We hope for the best from this stage forward.
It has been emotionally exhausting the last few days with all of this turmoil and I look forward to a relaxing weekend.
This weekend is the Celtic Festival and we look forward to some good old fashion fun.
Thursday, May 27, 2010
update on my frustration with Hershey
Well,
There is no nice way to put this except to say that the team at Hershey Medical Center did not tell me the truth. When I specifically asked why the labs had to be done there, I was told that it was because of the rules from the Foundation of the Accrediation of cellular therapy.
SO naturally I called the foundation....and did I learn QUITE A BIT....including that the labs simply needed to be done by FDA approved test and that any major hospital could do them and used that testing. And that many patients have labs and even cell harvesting done at other facilities. They also support the ratings by US news and World report...and that puts Hershey OFF the list of top 100.
I will not abide by Doctor's not being honest with me. And This doctor is particularly arrogant.
I am making some phone calls in regards to pursuing this treatment elsewhere. If it is feasible with out delaying the treatment, then I need to find a doctor I can trust and rely on, not one with the attitude I listened to on the phone just a little while ago.
I'll be speaking with Brian's oncologist tomorrow and with the financial dept. at RWJUH. To find out what I can.
Very disappointed in the attitude at Hershey....and the blatant lack of concern over our issues...how can I trust them if they don't care about the whole picture and just "their" agenda?
I didn't like the doctor at the first meeting and I sure didn't like the attitude I got from him on the phone today. I trust my inner voice and it's screaming right now.
the frustration with a process....
I am very frustrated with Hershey Medical Center. And quite honestly somewhat aggravated. I feel like "they" are not listening to me when I talk to them about driving out there just to sign papers and have labs done.
Labs that won't be valid for the surgery on the 7th because they would be done too soon prior and papers that at the very least could be faxed to me. Explain why we should drive 6 hours for this?...not only is it not practical, it's very stressful on Brian and myself, and my car and a lot of money spent on gas.
Now I don't wish to seem uncooperative, but I do not feel like they have the patients' best interest in mind here when they are not even paying attention to my concerns. I hope we have not made a mistake in choosing them for the transplant procedure....maybe we SHOULD consider our other alternatives again.....arrogance is NOT what saves patient's lives.
Let's hope they call later with a better plan....
Last night we had dinner with Scott's sister Donna and her husband and daughters. They were able to give Brian a donation from the poker benefit they so very kindly had in his honor. It was a lovely visit and so very nice they did this for him. It certainly will help to off set some of the expenses we encounter in his treatment.
Thanks again.
Labs that won't be valid for the surgery on the 7th because they would be done too soon prior and papers that at the very least could be faxed to me. Explain why we should drive 6 hours for this?...not only is it not practical, it's very stressful on Brian and myself, and my car and a lot of money spent on gas.
Now I don't wish to seem uncooperative, but I do not feel like they have the patients' best interest in mind here when they are not even paying attention to my concerns. I hope we have not made a mistake in choosing them for the transplant procedure....maybe we SHOULD consider our other alternatives again.....arrogance is NOT what saves patient's lives.
Let's hope they call later with a better plan....
Last night we had dinner with Scott's sister Donna and her husband and daughters. They were able to give Brian a donation from the poker benefit they so very kindly had in his honor. It was a lovely visit and so very nice they did this for him. It certainly will help to off set some of the expenses we encounter in his treatment.
Thanks again.
Tuesday, May 25, 2010
testing tuesday....
Today started my day of frustration with the phone call from Hershey's admissions...to get information from us for Brian's admission on 6/7 for surgery to place the hickman line. Nice...except NO ONE bothered to call me before hand and let me know it was scheduled....WTF??
Then the rather rabid "Tara" from Pulmonary associates called to schedule an appointment for Brian.
She called on Friday and left a message, but I didn't call her back because I was waiting to hear from Hershey...so she called again yesterday...then today the message was more like one you'd expect to hear from a debt collector then a DR.'s office trying to schedule an appointment. geeze...give people a chance to return your phone call lady....and take some valium.
I find it hard to believe that people are so incredibly clueless....but well..maybe i don't find it hard to believe....but trust me, you really don't want the bitchy side to come out and play people...I am a NJ girl after all.....I work at being nice....and being a bitch is easy.
stress....
stress.....
stress.....
Special thanks to my good friend Mohamed Kilany and his wife Julie for sending Brian the rosetta stone Espanol. He is very excited to have it. Thanks again...and travel safely.
Then the rather rabid "Tara" from Pulmonary associates called to schedule an appointment for Brian.
She called on Friday and left a message, but I didn't call her back because I was waiting to hear from Hershey...so she called again yesterday...then today the message was more like one you'd expect to hear from a debt collector then a DR.'s office trying to schedule an appointment. geeze...give people a chance to return your phone call lady....and take some valium.
I find it hard to believe that people are so incredibly clueless....but well..maybe i don't find it hard to believe....but trust me, you really don't want the bitchy side to come out and play people...I am a NJ girl after all.....I work at being nice....and being a bitch is easy.
stress....
stress.....
stress.....
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Special thanks to my good friend Mohamed Kilany and his wife Julie for sending Brian the rosetta stone Espanol. He is very excited to have it. Thanks again...and travel safely.
Monday, May 24, 2010
Monday, monday.....
Well, today was a bunch of paperwork. But I got the first batch done and mailed. Some medical stuff, and mainly the SSI stuff. Though another few envelopes came in the mail with more things to fill out. It just never ends.
It is very humid here today and making me a little cranky. On the way home from the post office, I had the windows open on the car because my air conditioner doesn't work and a bug flew in and I swallowed it...I coughed all the way home because it didn't just go down nicely....that was really freakin pleasant....
I stopped at shoprite on the way home and got a 6 pack of beer. Brian's never had any, and he told me he'd like to try it. (we don't really drink, so it isn't a big surprise) He was very specific, and on one hand it is amusing and on the other, I can see that he is concerned about all the things he hasn't tried or done, and they are obviously weighing heavily on his mind before the transplant.
It is heartbreaking to watch him go through this, knowing he's now lost 10 years to dealing with this disease. He didn't really get to go to HS, he didn't go to prom, have a girlfriend or even learn to drive, because if it wasn't the cancer, it was the debilitating long term side effects he's suffered for so long. He was finally off medications and ready to learn to drive right before Christmas...how incredibly unfair for him. Makes me so damn angry as well....especially thinking back on some of the road blocks we dealt with after the original chemo to getting the side effect issues diagnosed and dealt with. Now it easy peasy and "everyone" is cognitive of the issues.
I got the medical report in the mail with his test results from the testing on the 12th..I'll be uploading them later on for you to read through. You'll see a reference to a nodule in his lung. I probably haven't mentioned it before, because it was part of the original lymphoma and I was told it was gone, so imagine my surprise when I read the report today. Here is a perfect example of why despite what you are told, you MUST obtain copies of all the reports and read them yourselves. NO ONE is a better patient advocate then the patient. (Or in this case the patient's pain in the ass MOMMY).
Thanks to our great neighbor Jim, who once again brought Scott something to help work on the car with, along with the always offer to help. He's really a great neighbor and friend and we are lucky to have him.
Sunday, May 23, 2010
Thanks!
Today I'd like to thank Scott's sister Donna, and her husband John for hosting a benefit in Brian's honor. Also special thanks to John's co-workers the PSEG guys who all came out to play in the poker benefit.
Donna and John planned and hosted this event all on their own, and that was a very kind and special thing to do.
THANK YOU GUYS!!!!
Saturday, May 22, 2010
Saturday's update
Brian is very tired today. He got up, took a shower, had some food and went back to bed.
Last night he was feeling better and even enjoyed a little play time with Chibi. Because I had video on my mind, and I was waiting for the camera to charge, I took a tiny little clip of Brian playing with the dog for you to enjoy.
The clip is taken with my phone..so the quality is lousy...sorry
Brian loves the animals very much. I know for a fact, it is a huge reason he fights so hard to stay well. The animals all love Brian too. All animals love Brian. Even ones who are otherwise not people oriented.
Here's Brian and Chibi....(who we fondly refer to as Ratbird....in part because of the noises he makes)
Last night he was feeling better and even enjoyed a little play time with Chibi. Because I had video on my mind, and I was waiting for the camera to charge, I took a tiny little clip of Brian playing with the dog for you to enjoy.
The clip is taken with my phone..so the quality is lousy...sorry
Brian loves the animals very much. I know for a fact, it is a huge reason he fights so hard to stay well. The animals all love Brian too. All animals love Brian. Even ones who are otherwise not people oriented.
Here's Brian and Chibi....(who we fondly refer to as Ratbird....in part because of the noises he makes)
Friday, May 21, 2010
Friday's musings
Brian is tired, but good. He's mainly resting and it's good he's getting the sleep.
I finished up all his SSI paperwork and have it ready to head to the mail tomorrow. We're going to rent a movie and grill some chicken tonight. try and relax..it's been a long week of paperwork and phone calls for me.
Though I am going to try and get one more round of ebay up and running as well.
Next week I'll call Hershey again as well as try and set up the appointment with the pulmonary specialist. I don't know if I can get an appointment before we start the whole transplant process, but we'll see.
I also need to get him to get his eyes checked and replacement glasses since while I fixed his, it's a temporary fix only.
tomorrow am I am going to a local flea market to try and get some books to read while we are out there. We have about 8 books to take with us, but that's just a weeks reading material. Fortunately Brian and I have similar tastes, so if I can procure another 10-15 cheap but current paperbacks we should have enough to occupy the time we will be sitting...and waiting...and sitting...I only hope Brian feels good enough to be a pest. IF he's bored and cranky..all will be good. :)
I finished up all his SSI paperwork and have it ready to head to the mail tomorrow. We're going to rent a movie and grill some chicken tonight. try and relax..it's been a long week of paperwork and phone calls for me.
Though I am going to try and get one more round of ebay up and running as well.
Next week I'll call Hershey again as well as try and set up the appointment with the pulmonary specialist. I don't know if I can get an appointment before we start the whole transplant process, but we'll see.
I also need to get him to get his eyes checked and replacement glasses since while I fixed his, it's a temporary fix only.
tomorrow am I am going to a local flea market to try and get some books to read while we are out there. We have about 8 books to take with us, but that's just a weeks reading material. Fortunately Brian and I have similar tastes, so if I can procure another 10-15 cheap but current paperbacks we should have enough to occupy the time we will be sitting...and waiting...and sitting...I only hope Brian feels good enough to be a pest. IF he's bored and cranky..all will be good. :)
Thursday, May 20, 2010
utter frustration
Seriously....the process is enough to make even the sanest NUTS....
Hershey didn't call..so I call them....get the run around totally yesterday....so I start fresh and early today....
the bottom line is very annoying and I can't help but feel like no one freaking listens to me...
they can't schedule the procedure until the insurance is approved...(okay no big surprise there)
they want us to drive out JUST TO SIGN papers to approve the transplant....um..ever hear of a fax?....or snail mail?.....but I have to drive almost 6 hours out and back just to sign papers?
then we have to drive out every day for neupogen injections?....no...sorry...not only is that unrealistic..it isn't good for me or brian to spending 6 hours a day in the car.
SO now they are going to "think" about how that can be accomplished easier....
believe me, there is nothing on this planet I won't do for Brian, but I am sure they can come up with a better plan....like getting the neupogen at the local hospital....or at least Lehigh....
Ahh..big surprise....once again...hurry up and wait....and be frustrated...and IT'S NOT LIKE I DIDN"T ALREADY TRY AND DISCUSS THIS WITH THEM LAST TIME ...BUT APPARENTLY SOME ONE WASN"T LISTENING.
HELLO
Hershey didn't call..so I call them....get the run around totally yesterday....so I start fresh and early today....
the bottom line is very annoying and I can't help but feel like no one freaking listens to me...
they can't schedule the procedure until the insurance is approved...(okay no big surprise there)
they want us to drive out JUST TO SIGN papers to approve the transplant....um..ever hear of a fax?....or snail mail?.....but I have to drive almost 6 hours out and back just to sign papers?
then we have to drive out every day for neupogen injections?....no...sorry...not only is that unrealistic..it isn't good for me or brian to spending 6 hours a day in the car.
SO now they are going to "think" about how that can be accomplished easier....
believe me, there is nothing on this planet I won't do for Brian, but I am sure they can come up with a better plan....like getting the neupogen at the local hospital....or at least Lehigh....
Ahh..big surprise....once again...hurry up and wait....and be frustrated...and IT'S NOT LIKE I DIDN"T ALREADY TRY AND DISCUSS THIS WITH THEM LAST TIME ...BUT APPARENTLY SOME ONE WASN"T LISTENING.
HELLO
Wednesday, May 19, 2010
filling out forms....ahhhh ...wonder woman :)
SO today was not terribly frustrating because I spoke with some nice people, but frustrating because of the government process...
I couldn't speak to this person on Brian's behalf because they didn't have a HIPA form on file...so I needed to have that sent to me...
I couldn't schedule an appointment for SSI because he'll be getting a bone marrow transplant during the only time they are scheduling appointments for....but I have to apply because it is required to continue the medicaid we just got approved...
IKES.....spent a good aprt of my day on the phone...online....printing out forms....now I am to the place where I have to make copies of all the medical paperwork....
one little, two little, three little indians...
again with the need to be all things for all people....
I couldn't speak to this person on Brian's behalf because they didn't have a HIPA form on file...so I needed to have that sent to me...
I couldn't schedule an appointment for SSI because he'll be getting a bone marrow transplant during the only time they are scheduling appointments for....but I have to apply because it is required to continue the medicaid we just got approved...
IKES.....spent a good aprt of my day on the phone...online....printing out forms....now I am to the place where I have to make copies of all the medical paperwork....
one little, two little, three little indians...
again with the need to be all things for all people....
Tuesday, May 18, 2010
waiting on Hershey
We're just waiting on the phone call from Hershey now to get everything scheduled and started.
Brian's feeling okay today, has some sniffles and sneezing, but the pollen count is high.
Not much else to report today.
Brian's feeling okay today, has some sniffles and sneezing, but the pollen count is high.
Not much else to report today.
Monday, May 17, 2010
Today's news from the oncology visit
Well, I forgot to get copies of the report....I'll have to call them tomorrow and have them mail them to me.
But to summarize....The PET scan was not negative, there is still evidence of lymphoma, although the removed, grown back tumor is much smaller. It does not change his eligibility for the transplant, as that is more based upon the cancer to respond to the chemotherapy (which it has, rather then achievement of remission which we have not.)
After some discussion with Dr. Ehmann (transplant Doctor from Hershey) We will start on that procedure as soon as it can be scheduled.
There will be the neupogen injections, then the harvesting of the stem cells and the insertion of the hickman catheter prior to the admission for the transplant procedure.
I would expect to hear from Hershey in the next few days and get a time line then.
The echo-cardiogram was normal and the pulmonary function test showed some bronchial restriction indicating asthma, damage, something along those lines, we will be seeing a pulmonary specialist, but that is secondary to the transplant.
so, no big surprises today, Brian had already told me he could feel the tumor, so I knew it was not going to be the ultimate results, but still a good enough response for him to go to transplant.
There is a lot of good information here...and I'll be posting some more links to help understand the process.
But to summarize....The PET scan was not negative, there is still evidence of lymphoma, although the removed, grown back tumor is much smaller. It does not change his eligibility for the transplant, as that is more based upon the cancer to respond to the chemotherapy (which it has, rather then achievement of remission which we have not.)
After some discussion with Dr. Ehmann (transplant Doctor from Hershey) We will start on that procedure as soon as it can be scheduled.
There will be the neupogen injections, then the harvesting of the stem cells and the insertion of the hickman catheter prior to the admission for the transplant procedure.
I would expect to hear from Hershey in the next few days and get a time line then.
The echo-cardiogram was normal and the pulmonary function test showed some bronchial restriction indicating asthma, damage, something along those lines, we will be seeing a pulmonary specialist, but that is secondary to the transplant.
so, no big surprises today, Brian had already told me he could feel the tumor, so I knew it was not going to be the ultimate results, but still a good enough response for him to go to transplant.
There is a lot of good information here...and I'll be posting some more links to help understand the process.
Saturday, May 15, 2010
Friday, May 14, 2010
Friday's update
Brian feels better today. He didn't have much of an appetite until I got back from costco with lots of fresh fruit and veggies and some decent meat. He's happily munching fresh strawberries all nice and clean. (Thanks again Jean)
The trip to costco was long and hot. The traffic was terrible. I think we are going to try the other costco next time. They are all about a hour and 15 minute drive from us, so we go every other week usually. But the food is better and it saves a lot of money even with the trip. Groceries here in the poconos are expensive and terrible. (okay, so we didn't go into a grocery store when we were looking at houses...guilty)
Stephanie isn't feeling too well still and Scott's cough is hanging on, but I am much better.
Had to call and finalize Brian's medicaid "stuff" today....pick a plan, a pcp, etc....hard to make choices about things that are not perfectly clear, but we can change plans and pcp's at anytime if we need to.
Guess tomorrow I will try and find out if vision exam is covered...he just broke his glasses...
....seems like it never rains but pours with expenses sometimes. I am going to try and solder/glue them when I get done here until we can get him a new pair....
what was that Harry Potter spell.....repaireomous?......yikes...
calgon take me away.....
The trip to costco was long and hot. The traffic was terrible. I think we are going to try the other costco next time. They are all about a hour and 15 minute drive from us, so we go every other week usually. But the food is better and it saves a lot of money even with the trip. Groceries here in the poconos are expensive and terrible. (okay, so we didn't go into a grocery store when we were looking at houses...guilty)
Stephanie isn't feeling too well still and Scott's cough is hanging on, but I am much better.
Had to call and finalize Brian's medicaid "stuff" today....pick a plan, a pcp, etc....hard to make choices about things that are not perfectly clear, but we can change plans and pcp's at anytime if we need to.
Guess tomorrow I will try and find out if vision exam is covered...he just broke his glasses...
what was that Harry Potter spell.....repaireomous?......yikes...
calgon take me away.....
Thursday, May 13, 2010
isn't it ironic
I spend 4 hours doing ebay so we can pay bills....I spend 3 hours researching up and coming cancer research on anything remotely related to Brian's cancer....I spend 2 hours on yard work etc...
and I didn't get a damn minute to spend with Brian...
wouldn't it be nice If I could just spend all my time with my son who has cancer and not have to worry about anything else?....shouldn't that be how it should be?....
people should stop watching stupid (non)-reality TV.... I've got some sucking reality for them....
and I didn't get a damn minute to spend with Brian...
wouldn't it be nice If I could just spend all my time with my son who has cancer and not have to worry about anything else?....shouldn't that be how it should be?....
people should stop watching stupid (non)-reality TV.... I've got some sucking reality for them....
a quick note today
Brian spend most of yesterday running from test to test...we got them all done and got home around 3:30.
He was and is still feeling peaked from both his cold and from the pet scan medications. Both the drinkable and injectable kind.
it's nice out today after some soaking rains, just trying to get normal things done....way behind on chores and that is just never good..there never seems to be a catch up time.
Stephanie seems to have the cold today that the rest of us have been suffering from. Scott and I have a cough now, but Brian doesn't so far...doesn't seem like anything serious but a lingering spring cold. Just enough to run us down a little.
Brian is still sleeping a lot, but it's best if he's sick as on top of the cancer.
We should have all the test results monday when we meet with the oncologist.
He was and is still feeling peaked from both his cold and from the pet scan medications. Both the drinkable and injectable kind.
it's nice out today after some soaking rains, just trying to get normal things done....way behind on chores and that is just never good..there never seems to be a catch up time.
Stephanie seems to have the cold today that the rest of us have been suffering from. Scott and I have a cough now, but Brian doesn't so far...doesn't seem like anything serious but a lingering spring cold. Just enough to run us down a little.
Brian is still sleeping a lot, but it's best if he's sick as on top of the cancer.
We should have all the test results monday when we meet with the oncologist.
Tuesday, May 11, 2010
sometimes we miss things
ah..here's the rain...tuesday instead
and the normally monday rain is coming down now..and it's cold rain.
Brian is still not feeling very well, and today he complained about his head hurting. But on the skin, so I think it is part and parcel to the nerve damage from the chemo. We'll see how it is in a few days. He's still got cold symptoms and has been sleeping a lot, but he says it feels like he isn't sleeping at all. I looked in on him a few times and he seems to be sleeping well, but he certainly is extra tired. He slept almost 18 hours today and is back in bed again.
Tomorrow we have an early start and a long day of tests. The echocardiogram, the pulmonary function test and then another pet scan. The first two tests are to make sure his heart and lungs can take the transplant procedure, and the pet scan is to restage the cancer and ensure the lymphoma has responded to the chemo. (IF the lymphoma hasn't responded then the plans will change probably drastically)
I went and got the landscaping ties today to make sure the bad little dogs can't dig out of their pen. Much to my delight, Home depot had them for $1.97.....I'm sure we've paid more like $8.00 from them in the past. So I am very pleased and have some comfort in knowing that even if the dogs are out unsupervised, they will be safe and sound. IF I can score a dog house on freecycle I'll have one less thing to worry about.
My throat hurts less today and I have no temp...I boxed up all my auction items to head out to the mail. Usually I get them right into the mail, but it's hard to do ebay and take care of Brian and be sick...
while I was boxing up the stuff, I watched a new episode of Dr. Who.....I admit I was so sad to learn David Tennent left the show, I really liked him, but the new doctor isn't bad...and I like the new companion. She's quite sassy...I like sassy.
Stephanie had her favorite cake today...chocolate with strawberry and custard filling...and NO, I didn't make her make it for herself...
She's out tonight with some girlfriends, hopefully behaving herself....Even if it is her 21st birthday.
A stray cat showed up today in the yard. (oh I "hear that collective sigh") I really hope he has a home, but I put some food out for him anyhow and there is already a couple of places he can stay dry. I do not lure them home with a can of sardines...I swear....
Scott talked this week to a friend of ours that used to live in NJ, but moved to Texas a long time ago....He didn't know about Brian's cancer coming back. But, it is kind of strange letting people know...especially since we'd had such good things happening with him right up to the christmas holiday.
It's just sort of strange period....sometimes people will say to me that it will pass, and I try and explain to them, we've passed the point now where we won't always deal with this.One way or another.... This is our life now, and while it isn't what we would choose, it is what we have. Like it or not, we just need to try and do the best we can, and that isn't very easy some days.
We won't have test results until Monday, so don't expect too much new information until then. As frustrating as it is to wait..it too is part of the process.
Special thanks to my friend Lynn for her kind donation. With all of the expenses we are going to have over the next two months, we really appreciate it.
Brian is still not feeling very well, and today he complained about his head hurting. But on the skin, so I think it is part and parcel to the nerve damage from the chemo. We'll see how it is in a few days. He's still got cold symptoms and has been sleeping a lot, but he says it feels like he isn't sleeping at all. I looked in on him a few times and he seems to be sleeping well, but he certainly is extra tired. He slept almost 18 hours today and is back in bed again.
Tomorrow we have an early start and a long day of tests. The echocardiogram, the pulmonary function test and then another pet scan. The first two tests are to make sure his heart and lungs can take the transplant procedure, and the pet scan is to restage the cancer and ensure the lymphoma has responded to the chemo. (IF the lymphoma hasn't responded then the plans will change probably drastically)
I went and got the landscaping ties today to make sure the bad little dogs can't dig out of their pen. Much to my delight, Home depot had them for $1.97.....I'm sure we've paid more like $8.00 from them in the past. So I am very pleased and have some comfort in knowing that even if the dogs are out unsupervised, they will be safe and sound. IF I can score a dog house on freecycle I'll have one less thing to worry about.
My throat hurts less today and I have no temp...I boxed up all my auction items to head out to the mail. Usually I get them right into the mail, but it's hard to do ebay and take care of Brian and be sick...
while I was boxing up the stuff, I watched a new episode of Dr. Who.....I admit I was so sad to learn David Tennent left the show, I really liked him, but the new doctor isn't bad...and I like the new companion. She's quite sassy...I like sassy.
Stephanie had her favorite cake today...chocolate with strawberry and custard filling...and NO, I didn't make her make it for herself...
She's out tonight with some girlfriends, hopefully behaving herself....Even if it is her 21st birthday.
A stray cat showed up today in the yard. (oh I "hear that collective sigh") I really hope he has a home, but I put some food out for him anyhow and there is already a couple of places he can stay dry. I do not lure them home with a can of sardines...I swear....
Scott talked this week to a friend of ours that used to live in NJ, but moved to Texas a long time ago....He didn't know about Brian's cancer coming back. But, it is kind of strange letting people know...especially since we'd had such good things happening with him right up to the christmas holiday.
It's just sort of strange period....sometimes people will say to me that it will pass, and I try and explain to them, we've passed the point now where we won't always deal with this.One way or another.... This is our life now, and while it isn't what we would choose, it is what we have. Like it or not, we just need to try and do the best we can, and that isn't very easy some days.
We won't have test results until Monday, so don't expect too much new information until then. As frustrating as it is to wait..it too is part of the process.
Special thanks to my friend Lynn for her kind donation. With all of the expenses we are going to have over the next two months, we really appreciate it.
Monday, May 10, 2010
Monday..No rain...
today was the first monday in a while it didn't rain. That was good. it is cold enough here tonight to have a fire though...which is also nice. I like having fires.
Brian and I both are not feeling well. I assume we picked something up on the last trip to the hospital. He's tired and has cold symptoms, I have a low grade fever and a very sore throat.
I found myself looking around tonight and being concerned about things being done when I am gone. Right now, I can run around and do the things that got overlooked or forgotten, but I won't be here to do that soon, and the stress I feel is tremendous. I am feeling very uptight about being away.
to make things worse, I don't really feel like all 4 of us are quite on the same page yet on priorities. I hope we get there soon, or I'll be driving back and forth from Hershey worried about things in both places wearing myself out and that won't do anyone any good.
I don't think people realize the strain that caregivers are really under. And I feel additional stress because I do not like to be away from home.
Even doctor's are clueless....I remember once about 1/2 through Brian's first treatments, his oncologist suggested I take a few books and get a hotel room at the beach for a few days. Gee, what a fabulous idea,....but she was totally clueless as to the financing strain and the inability of spare time and funds to just take off like that. It never ceases to amaze me how smart people are just that stupid sometimes.
tomorrow I have to get a couple of landscaping ties to put around the dog pen....we dog tested it to day and identified a few places where Wubbie will no doubt try and get out. I think a landscaping ties will address that issue and it will be one more thing off my "list"
Brian and I both are not feeling well. I assume we picked something up on the last trip to the hospital. He's tired and has cold symptoms, I have a low grade fever and a very sore throat.
I found myself looking around tonight and being concerned about things being done when I am gone. Right now, I can run around and do the things that got overlooked or forgotten, but I won't be here to do that soon, and the stress I feel is tremendous. I am feeling very uptight about being away.
to make things worse, I don't really feel like all 4 of us are quite on the same page yet on priorities. I hope we get there soon, or I'll be driving back and forth from Hershey worried about things in both places wearing myself out and that won't do anyone any good.
I don't think people realize the strain that caregivers are really under. And I feel additional stress because I do not like to be away from home.
Even doctor's are clueless....I remember once about 1/2 through Brian's first treatments, his oncologist suggested I take a few books and get a hotel room at the beach for a few days. Gee, what a fabulous idea,....but she was totally clueless as to the financing strain and the inability of spare time and funds to just take off like that. It never ceases to amaze me how smart people are just that stupid sometimes.
tomorrow I have to get a couple of landscaping ties to put around the dog pen....we dog tested it to day and identified a few places where Wubbie will no doubt try and get out. I think a landscaping ties will address that issue and it will be one more thing off my "list"
Saturday, May 8, 2010
satuday...what a day...
what a windy day.... crazy winds here today. Lost power for a while as well....
Scott picked up a dog pen the other day I found on Freecycle. We put it up today for the dogs. It's better then the little bit of fence we had up for them. It gives them a much bigger space to run around, and gives Brian a little more room to sit with them and throw a ball for them. As much as I don't want them to be, the dogs are an issue because Brian has in the past spent the majority of the time with them.
if you are not familiar with Freecycle, I recommend checking it out. I've been a member for many years, it's purpose is to share unwanted things with one another while keeping things out of the landfills. It's great. I highly recommend it to everyone. I have both given away a zillion things, as well as gotten many things. I have also make friends through Freecycle (Hi Jean :) ) Great Friends.
Brian decided to try and help with a few chores today. He worked around the house on pet chores and did a load of laundry. After about 40 minutes, he was totally exhausted and has been alseep for a long time now. But it is good he felt up to helping a little and that he's sleeping now.
Stephanie came home from work with my favorite bead magazines, a couple of roses and a great card for mother's day. Does it get any better then that?....well maybe the years where her birthday is also on Mother's day.
I have a bit of a cold...and quite a sore throat tonight, but I am rarely sick, so I am sure it will pass quickly.
Hopefully Brian will wake up plenty refreshed after the long sleep he is getting. I hope he will feel up to having a nice BBQ outside. wind and rain permitting. He's got a busy day on wedneday and will be pretty tired out after all that testing.
Scott picked up a dog pen the other day I found on Freecycle. We put it up today for the dogs. It's better then the little bit of fence we had up for them. It gives them a much bigger space to run around, and gives Brian a little more room to sit with them and throw a ball for them. As much as I don't want them to be, the dogs are an issue because Brian has in the past spent the majority of the time with them.
if you are not familiar with Freecycle, I recommend checking it out. I've been a member for many years, it's purpose is to share unwanted things with one another while keeping things out of the landfills. It's great. I highly recommend it to everyone. I have both given away a zillion things, as well as gotten many things. I have also make friends through Freecycle (Hi Jean :) ) Great Friends.
Brian decided to try and help with a few chores today. He worked around the house on pet chores and did a load of laundry. After about 40 minutes, he was totally exhausted and has been alseep for a long time now. But it is good he felt up to helping a little and that he's sleeping now.
Stephanie came home from work with my favorite bead magazines, a couple of roses and a great card for mother's day. Does it get any better then that?....well maybe the years where her birthday is also on Mother's day.
I have a bit of a cold...and quite a sore throat tonight, but I am rarely sick, so I am sure it will pass quickly.
Hopefully Brian will wake up plenty refreshed after the long sleep he is getting. I hope he will feel up to having a nice BBQ outside. wind and rain permitting. He's got a busy day on wedneday and will be pretty tired out after all that testing.
Thursday, May 6, 2010
Thursday's thoughts 2
Today we stayed home. Meowie is definitively on her way to the rainbow bridge and none of us really felt like going to the movies and then coming home to find her gone. So we've lit some candles, wrapped her in a soft blanket and are just spending time waiting for her to pass quietly.
If some of you question that choice rather then rush off to the vet to euthanize her, let me assure you she is in no apparent pain and is sleeping. She is just very old. I have made that choice for too many of my pets, and it is never an easy one. Those of you who have been "with me" through the FIP ordeal know only too well I have seen enough to last me forever.
When Brian was younger, and our first cat died, he decided we would wrap her like a mummy and place her favorite things in a box with her. Stephanie likes to plant bleeding hearts around in memory of a passed favorite pet.
I think with Meowie, a simple grave in the woods with a chicken leg would make her spirit happy.
I trapped Meowie a few days before she gave birth to 4 kittens about 16+ years ago. She was part of a feral cat colony that lived behind the Kentucky fried chicken in Flemington. She never tamed, not in all those years she's lived with us, but she was happy, she'd eat in the kitchen with us, sleep on the end of the bed, but never was there ever touching allowed. But unlike some feral, she was always happy inside. When we moved, it was quite a chore to get her into a carrier...but that is another story.
Brian worked on the laptop some more installing a few more older games to play in Hershey, and trying out a few more to see if they would run. Transferring some files from his computer as well. Since I doubt we will have internet access at the hospital, he's frustrated and a little cranky about his gaming limitations. For those of you who don't know, Brian deal with a great deal of things through video game transference. Unlike his father, he has really no temper, in fact tends towards passive aggression and the video game thing works for him.
Scott's sister Donna and her husband have planned a fund raiser for Brian
http://www.facebook.com/home.php#!/event.php?eid=125387870804962
and we want to thank her for all her support and efforts on Brian's behalf. It's really a terrific thing she's planning.
If some of you question that choice rather then rush off to the vet to euthanize her, let me assure you she is in no apparent pain and is sleeping. She is just very old. I have made that choice for too many of my pets, and it is never an easy one. Those of you who have been "with me" through the FIP ordeal know only too well I have seen enough to last me forever.
When Brian was younger, and our first cat died, he decided we would wrap her like a mummy and place her favorite things in a box with her. Stephanie likes to plant bleeding hearts around in memory of a passed favorite pet.
I think with Meowie, a simple grave in the woods with a chicken leg would make her spirit happy.
I trapped Meowie a few days before she gave birth to 4 kittens about 16+ years ago. She was part of a feral cat colony that lived behind the Kentucky fried chicken in Flemington. She never tamed, not in all those years she's lived with us, but she was happy, she'd eat in the kitchen with us, sleep on the end of the bed, but never was there ever touching allowed. But unlike some feral, she was always happy inside. When we moved, it was quite a chore to get her into a carrier...but that is another story.
Brian worked on the laptop some more installing a few more older games to play in Hershey, and trying out a few more to see if they would run. Transferring some files from his computer as well. Since I doubt we will have internet access at the hospital, he's frustrated and a little cranky about his gaming limitations. For those of you who don't know, Brian deal with a great deal of things through video game transference. Unlike his father, he has really no temper, in fact tends towards passive aggression and the video game thing works for him.
Scott's sister Donna and her husband have planned a fund raiser for Brian
http://www.facebook.com/home.php#!/event.php?eid=125387870804962
and we want to thank her for all her support and efforts on Brian's behalf. It's really a terrific thing she's planning.
Wednesday, May 5, 2010
Wednesday's check up.....
We headed for Allentown early this morning....the driver's were their typical crazy on 33....and we were down to 78 at the tail end of rush hour.
There was a wait for a while at the clinic, which isn't typical and Brian was a little manic....but considering he hasn't been on any medications for that in quite a while now, not too bad...he's obviously been watching the news too much..
His check up and counts were good. Although the nurse had a difficult time drawing blood. And although the nurse practitioner he say is obviously very intelligent and competent, I'd be lying if I said I particularly cared for her mannerisms. She's got an air of superiority I took an instant dislike to. I don't think she much cares for me either.....I'm crushed....really I am.....just...crushed.....two know it alls in a room together...just a bad mix.
Stephanie interviewed again today for the new job...that is 2 interviews in 2 days for the same job..(first with the sous chef and today wit hteh head chef) ...she's very excited and I am not sure she can take the rejection should it come...I am concerned about that for sure. But she gave it her all....and brought with her two days in a row quite a portfolio of tastiness.....I know I just hated my kitchen being full of yummy things. She's really quite talented and they would be missing quite the catch if she doesn't get the job. She's got the drive and imagination for sure.
Brian has the tests next week, the doctor visit the following monday...and then I would imagine we'll get scheduled to go out to Hershey to start the harvest procedures.
Because Brian's counts are so good and he's been house bound for so long, I am going to take him to the movies tomorrow to see "How to train your Dragon". He doesn't have a lot of time before he is facing a long time of isolation. It's not good for a young man to be so confined....even a self contained one like Brian.
One of our old cats is going to pass in the next few days. She is about 17 and has lived a good long life, although in all the time, she never allowed us to really handle her. I had taken in 3 ferals many years ago, and she is the last of them. It is good that her passing is natural and will occur before I have to go away with Brian.
Brian is somewhat uptight about the whole process as the time gets closer. But he is trying to prepare and think about what he will do for at least 3 weeks in a bed, so you might see some things appear on his wish list...he has a small pile of books ready, has an old laptop with a few old games on it....(and I am going to try and get THE DIG installed on it as well...it was a great old game we loved). We're also going to see if we can get the PS3 to work with the smaller computer monitor so he can take that as well. 3 ++ weeks can be a really LONG time.....and he can fry my brain fast if he's bored...and Brian can feel like death warmed over and still bored and annoying...trust me.
I know I have a few days of emails etc to answer...but I am swamped with ebay and Brian and some paperwork I have to get done, so give me a few more days to try and get to you.
There was a wait for a while at the clinic, which isn't typical and Brian was a little manic....but considering he hasn't been on any medications for that in quite a while now, not too bad...he's obviously been watching the news too much..
His check up and counts were good. Although the nurse had a difficult time drawing blood. And although the nurse practitioner he say is obviously very intelligent and competent, I'd be lying if I said I particularly cared for her mannerisms. She's got an air of superiority I took an instant dislike to. I don't think she much cares for me either.....I'm crushed....really I am.....just...crushed.....two know it alls in a room together...just a bad mix.
Stephanie interviewed again today for the new job...that is 2 interviews in 2 days for the same job..(first with the sous chef and today wit hteh head chef) ...she's very excited and I am not sure she can take the rejection should it come...I am concerned about that for sure. But she gave it her all....and brought with her two days in a row quite a portfolio of tastiness.....I know I just hated my kitchen being full of yummy things. She's really quite talented and they would be missing quite the catch if she doesn't get the job. She's got the drive and imagination for sure.
Brian has the tests next week, the doctor visit the following monday...and then I would imagine we'll get scheduled to go out to Hershey to start the harvest procedures.
Because Brian's counts are so good and he's been house bound for so long, I am going to take him to the movies tomorrow to see "How to train your Dragon". He doesn't have a lot of time before he is facing a long time of isolation. It's not good for a young man to be so confined....even a self contained one like Brian.
One of our old cats is going to pass in the next few days. She is about 17 and has lived a good long life, although in all the time, she never allowed us to really handle her. I had taken in 3 ferals many years ago, and she is the last of them. It is good that her passing is natural and will occur before I have to go away with Brian.
Brian is somewhat uptight about the whole process as the time gets closer. But he is trying to prepare and think about what he will do for at least 3 weeks in a bed, so you might see some things appear on his wish list...he has a small pile of books ready, has an old laptop with a few old games on it....(and I am going to try and get THE DIG installed on it as well...it was a great old game we loved). We're also going to see if we can get the PS3 to work with the smaller computer monitor so he can take that as well. 3 ++ weeks can be a really LONG time.....and he can fry my brain fast if he's bored...and Brian can feel like death warmed over and still bored and annoying...trust me.
I know I have a few days of emails etc to answer...but I am swamped with ebay and Brian and some paperwork I have to get done, so give me a few more days to try and get to you.
Monday, May 3, 2010
Monday's musings
Well, the good news is that the toe looks better today. We soaked it last night for a while and clipped it back a little more. I think we have headed off the worst of an infection. We cleaned it up with betadine and a band-aid at least for a short while....
I think his counts are going to be surprisingly good wednesday. He looks good, his color is pink and there hasn't been any petechiae. The mouth sores haven't really amounted to too much this time, even less then before and the area on his lip is all healed.
Stephanie is working on her portfolio for a job interview tomorrow....and let me tell you, her portfolio is delicious...there is bread rising, dough sitting...and cookies chilling. I am going to print out some of the other things she's produced and put together some pictures as well for her.
It's a beautiful day here, mid 70's, sunny, warm...if I wouldn't feel guilty about how much I have to get done, I'd go sit at the lake for a couple of hours. But I need to get a ton of things done, laundry and bathroom cleaning. I do wish I had a clothes line up, it's a perfect day to hang wash, and there is nothing like sheets and clothes dried on a line. The smell is wonderful.
(add to the do list...clothes line...wonder where mine is from the other house?...I suppose we probably used the rope to tie things for the move...)
It rained last night which was good, we needed it, and all the dandelions bloomed, so no more salad greens..they are too bitter once they bloom, but I got some for salad last week. The lilacs are blooming, just a few flowers, the move last year shocked them and it will take at least another year before they are full again.
The Doe and her yearlings were here last night. Brian fed them banana peels and some apple skin. He says the apple skin tastes funny to him right now, so he's been peeling his apples. He said a few things taste funny still, but that will pass once the treatments are behind him. He loves to feed the deer. They are very tame here. We heard the turkeys and they riled up the dogs, but I haven't seen them. Brian said he saw one of the chipmunks the other day, they are very fun to watch.
I can hear Stephanie on the phone in the other room, and I can't help but thinking she's really missing her calling....she really should have been a social worker...but pastry and baking is her heart's desire....
I have more medical paperwork to work on tonight for a while. I always feel like I am behind it in. Of course that more comes in the mail everyday doesn't help.
Scott has a cough today...I don't know if he caught a cold from work or what, but I hope he doesn't share it.
I think his counts are going to be surprisingly good wednesday. He looks good, his color is pink and there hasn't been any petechiae. The mouth sores haven't really amounted to too much this time, even less then before and the area on his lip is all healed.
Stephanie is working on her portfolio for a job interview tomorrow....and let me tell you, her portfolio is delicious...there is bread rising, dough sitting...and cookies chilling. I am going to print out some of the other things she's produced and put together some pictures as well for her.
It's a beautiful day here, mid 70's, sunny, warm...if I wouldn't feel guilty about how much I have to get done, I'd go sit at the lake for a couple of hours. But I need to get a ton of things done, laundry and bathroom cleaning. I do wish I had a clothes line up, it's a perfect day to hang wash, and there is nothing like sheets and clothes dried on a line. The smell is wonderful.
(add to the do list...clothes line...wonder where mine is from the other house?...I suppose we probably used the rope to tie things for the move...)
It rained last night which was good, we needed it, and all the dandelions bloomed, so no more salad greens..they are too bitter once they bloom, but I got some for salad last week. The lilacs are blooming, just a few flowers, the move last year shocked them and it will take at least another year before they are full again.
The Doe and her yearlings were here last night. Brian fed them banana peels and some apple skin. He says the apple skin tastes funny to him right now, so he's been peeling his apples. He said a few things taste funny still, but that will pass once the treatments are behind him. He loves to feed the deer. They are very tame here. We heard the turkeys and they riled up the dogs, but I haven't seen them. Brian said he saw one of the chipmunks the other day, they are very fun to watch.
I can hear Stephanie on the phone in the other room, and I can't help but thinking she's really missing her calling....she really should have been a social worker...but pastry and baking is her heart's desire....
I have more medical paperwork to work on tonight for a while. I always feel like I am behind it in. Of course that more comes in the mail everyday doesn't help.
Scott has a cough today...I don't know if he caught a cold from work or what, but I hope he doesn't share it.
Sunday, May 2, 2010
the weekend's always too short...part deux....
I barely even noticed it was a weekend...it was just go go go....and once again I feel like I barely accomplished anything.
I think I should take a day off...I am worn out and starting to not accomplish things effectively. It happens when you run and run...
Scott took the door apart on the car trying to fix the motor on the window that doesn't go up and down that I need to work for the parking garage at the hospital...He didn't get it finished before he needed to go to bed for work....hopefully it will get finished tomorrow.
Stephanie is going out to look for a new job tomorrow...things are deteriorating at her current job and she didn't make enough over the weekend to justify the drive there. Besides...there is just too many unsavory things going on there...time to move on. It makes her sad because she has a great work ethic and hates being under appreciated.
Brian has an infected toenail. I clipped it and cleaned it up best I could, but I am concerned since his counts are heading into the usually lowest period. He ended up spending a week in the hospital in 2001 because of an infected toenail during neutropenia.
Oh course I had to bug him about putting some slippers or shoes on his feet....he is my barefoot child for sure...I rarely wear anything more then flipflops even in the winter.
Not sure if the toe will land us back at the hospital sooner then Wednesday or not..sort of depends on his immune system.
Tonight He felt a lump back near his incision and he was concerned it was the cancer again so quickly. It looks a little swollen, but I didn't feel anything. The PET scan on the 12th will give us the answer to that...I don't know if it will change anything if it is regrowing so quickly.
I know it is not good if it is regrowing so quickly.
I think I should take a day off...I am worn out and starting to not accomplish things effectively. It happens when you run and run...
Scott took the door apart on the car trying to fix the motor on the window that doesn't go up and down that I need to work for the parking garage at the hospital...He didn't get it finished before he needed to go to bed for work....hopefully it will get finished tomorrow.
Stephanie is going out to look for a new job tomorrow...things are deteriorating at her current job and she didn't make enough over the weekend to justify the drive there. Besides...there is just too many unsavory things going on there...time to move on. It makes her sad because she has a great work ethic and hates being under appreciated.
Brian has an infected toenail. I clipped it and cleaned it up best I could, but I am concerned since his counts are heading into the usually lowest period. He ended up spending a week in the hospital in 2001 because of an infected toenail during neutropenia.
Oh course I had to bug him about putting some slippers or shoes on his feet....he is my barefoot child for sure...I rarely wear anything more then flipflops even in the winter.
Not sure if the toe will land us back at the hospital sooner then Wednesday or not..sort of depends on his immune system.
Tonight He felt a lump back near his incision and he was concerned it was the cancer again so quickly. It looks a little swollen, but I didn't feel anything. The PET scan on the 12th will give us the answer to that...I don't know if it will change anything if it is regrowing so quickly.
I know it is not good if it is regrowing so quickly.
Saturday, May 1, 2010
Saturday update
Brian's feeling okay. He is getting the mouth sores, but we already started him on the prescription mouth rinse to help with them.
He tends to eat a softer colder diet to help as well...(ie: fruit smoothees).
I updated the calender to show the NADIR visit next week. He'll be at the lowest counts at that time, 2 weeks following the chemotherapy. Hopefully not too low and he won't require any transfusions.
He seems good so far, relatively speaking.
He has had a small stitch knot surface through his skin up above the port placement. Not sure if it was suppose to dissolve, or it is holding the catheter, but we'll have the doctor look next next, unless it starts to look infected, then we'll go to the ER. Can't mess around with even the smallest of infections during the low count times. Something innocent enough looking can land him in the hospital for several days. This has happened in the past, so we know to be as careful as possible.
It's 84 degrees here today....where did spring go?.....but it's a beautiful day.
He tends to eat a softer colder diet to help as well...(ie: fruit smoothees).
I updated the calender to show the NADIR visit next week. He'll be at the lowest counts at that time, 2 weeks following the chemotherapy. Hopefully not too low and he won't require any transfusions.
He seems good so far, relatively speaking.
He has had a small stitch knot surface through his skin up above the port placement. Not sure if it was suppose to dissolve, or it is holding the catheter, but we'll have the doctor look next next, unless it starts to look infected, then we'll go to the ER. Can't mess around with even the smallest of infections during the low count times. Something innocent enough looking can land him in the hospital for several days. This has happened in the past, so we know to be as careful as possible.
It's 84 degrees here today....where did spring go?.....but it's a beautiful day.
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