freaking nightmare...

My computer crashed today...REALLY crashed. Despite over 12 hours of trying to fix it and salvage data, it's hard drive is dead.
I have an external back up drive, but the laptop I am typing on right now is too old to recognize it.( thank you Debbie for the back up in case of emergency) I am hoping that I can get a new computer, and I am hoping that I can retrieve the information. My files, pictures, itunes, quicken, etc...it is just a nightmare I do not need to deal with right now.

It's so funny in that nasty ironic kind of way. I've helped a lot people with their computers and frequently preach back up...hard copy..etc..and here I am caught with a back up I can't seem to access and no hard copies of anything.

On top if it, a new computer is not exactly in the budget...and did I mention a rock flew up and broke the windshield on Stephanie's car?....broke it good, it also needs to be replaced. I feel like ripping my hair out in frustration.

I really don't like how this week is going. I am angry, frustrated, tired, agitated, now on top of taking care of Brian, worrying about everything, I need to figure out the computer issue, completely rebuild my data bases...tax information, email addresses, AHHHHHHHHHHHH.

There isn't enough hours in a day and pennies in my purse. Thomas Paine wasn't kidding when he said "These are the times that try men's souls"....

good thing my hair is short...I think I'd rip it all out right about now.

Now, update about Brian...he is tired, has an ulcer (on his bum) from the chemotherapy, and is having more trouble with lack of feeling in his feet. I am going to make him use my cane for a while, I saw him trip today while we were in the hospital (for labs) and I can't support him like I did when he was younger. It's just better if he has the cane, BUT I know that suggestion is going to go over like a lead balloon.

Tomorrow is hectic..Stephanie's car has to go to the shop for new brakes and we have to do something about the windshield...(it's totally splintered across the front) or it won't pass inspection, and it isn't safe for her to drive that way. I have to see about the computer...I have to go get a prescription filled for Brian's ulcer...

I need a money tree, a clone machine and some anti anxiety medications....

and to think, just last night we were having a lovely relaxing evening watching a movie...hanging out...how quickly things change...
if I wasn't grey haired already, I would be after today.

SNOW....

Okay, so I admit it, I am a snow junkee....the miserable cold rain turned to glorious snow. Not a lot, but about 2 inches. Just on the mountain top, because when I went to the grocery store (YES AGAIN...) it was rain down the valley. It's windy tonight, but I'll bring some wood in and light a fire. The cats will be happy...they think the slate hearth is a kitty warming plate.
I think Scott and the dogs are tired of the snow though. It was a small dog pile up at the back door when they realized it was cold again.

Brian slept most of today. First really good sleep he's had since the dexamethasone. The steroids disturb his sleep. He's feeling better, less nauseated, but more tired. His blood cells are most likely starting to die off and his counts will be starting to fall. He's still quite hungry, but it's not a bad as it has been over the weekend. I'm going to make lasagna with spinach, a good dish high iron.

Stephanie is off work tonight, so we're going to hit up the redbox and get a movie...movie...nice fire in the fireplace...warm kitties...and lasagna...sounds good to me. These are the few times here and there that we will get some "down" time. (though I'll be doing laundry too...)

This is how we roll....

Many times in the last ten years, people have commented on how they just don't know how we can do it...

I am going to share a small little vial of "how we do it"...it is because we just are not normal people..we don't look for comfort in normal places, we don't look to fit in or be "like the Jones' " in fact we abhor that behavior...

sometime we are rough and crass and definitely couldn't care less about society norms. OR social standing...What we do have is an enormous about of love for one another, and a Wicked sense of humor.

THIS...is the kind of bumper sticker I would proudly display on my car...none of that touchy feelgood crap for me... It's the truth and it is TOTALLY how Brian feels...

Order it here....

another damn rainy monday

I hate rain...and the grey that goes with it. It's raining for the second day in a row.

we went to the hospital for labs today, then I spent the afternoon on the phone scheduling appointments, making sure the labs were getting faxed correctly and speaking with the social worker at Hershey to see what arrangements I could make for staying when we go out there.

Bam...three hours gone...no wonder I lose track of so much time.

I updated the calender with our new schedule. However it is subject to change on several counts..first would be the lab results....we can have to go into the hospital at anytime if Brian develops petechiae or fever etc...

We will also be going out to Hershey to meet with the transplant team sometime in the next few weeks. That has to be scheduled once they review Brian's tests, results, pathology etc...and determine what tests they wish to run themselves as well as a treatment plan. We'll probably have to get a hotel room and spend a few days there for the harvesting of the stem cells as well.

There was a problem with the medicaid application, seems the internist that saw Brian in February for his surgical stay never filled out his part. It was almost by accident that I found out about that, and have made sure that is in the correct hands to get filled out, but that means another 4-6 weeks of waiting since it hasn't left the hospital to get to the state even...

You just simply can not rely that these things will get done correctly without supervision. Like my plate is not already full enough.

Special thanks today goes to grandpa for the playstation3....Brian is completely thrilled and I have to immediately go get him a game so I can have 5 minutes of peace. and a nap..I need a nap...again...this is where that lack of sleep comes into play...SO many things to get done..and only one me. And these are not things I can even give to other people to do...these are the normal things that fill out our lives crammed into a tiny space left by the BIG thing that fills my life right now.

Sunday's musings

Today is our first "free" day in a week. I don't have to be any place with Brian. In a way it feels refreshing, but in another way it feels stressful. After all, it is not like life simply stops because you're too busy to deal with it.

This is one of those day where the choices are the hardest. Do I catch up on laundry, housework, yard work, paper work...pay bills...(well, I better do that or we won't have any water or electricity, or cell phones...etc)...
OR do I catch up on rest...or something else that helps me relax and de stress?

I started the day on the phone trying to find a solution to one of the never ending issues, and in doing so I found myself torn between asking someone to do something they might not feel 100% comfy with, or what I need for Brian. The answer was easy...I asked because Brian needs....many of our days will include little personal dilemma's like that. In the end, a mom's got to do, what a mom's got to do...anything else...so not important.

so back to what I am going to do with the rest of my day....well first I am going to see if Brian has left me anything to eat. Then I am going to go to the grocery store, because I am pretty sure that the answer to that is probably a can of tuna, and another obscure can of something that the label has peeled off of, and it most likely dog food.
THEN I think a nap is in order. I learned the very serious pitfalls last time he had cancer of trying to do too much and not getting enough sleep.

We have our "schedule" this week of M,W,F labs, but that is subject to change. IF labs dip too low then he'll have to be hospitalized, and at some point I know the cancer clinic is going to call with a time they want to check him over (I know this because my paperwork tells me they will be called to schedule an appt.)

Brian is cranky, nauseous and starving at the same time ( and he says that is hell [his words])and he says his bones hurt (that would be the neulasta).

Stephanie is baking filling some cheesecake/pie/cookie orders she has...hope she'll leave a few for me to judge..

I don't remember if I mentioned this before, but special thanks to our neighbor Jim who always comes over and helps Scott with the cars and is always willing to watch over things. He's a good neighbor and friend.

'ROID RAGE

Anyone who says that "they didn't know" someone was taking steroids...is FULL OF CRAP.

One more day to go on them, and after just a week, not only is Brian crawling the walls, he's eating them as well. I am fairly sure he's consumed 90% of the weeks groceries I bought two days ago.
He's red cheeked, totally hyper and did I mention CRAWLING THE WALLS?

I took a nap this afternoon for about 2 hours. When I woke up, I came downstairs and the table in the living room was piled high with wrappers, banana peels, orange peels, plates, soda cans, pickle jar,glasses even an empty tub of icing and an empty gallon milk jug.
I'm pretty sure that if it wasn't frozen, it's gone....he might have even eaten some frozen stuff....I wouldn't be surprised.
I just cooked a pot of veggies and 4 fish fillets for him, and when I came back, he was dipping pumpernickel bread into a glass of V8...and THAT was just nasty....

I'm going to go tie him to the bed now.....will be back later for anymore updates...

oh, and if you don't hear from me?.....well....then....I guess I was tasty....or I am out robbing the local grocery store....(just kiddin)

a day in the life..

Enjoy....

a day in the life....

late night musings...

10 years ago when Brian was diagnosed, he was a freshman in high school, and Stephanie was in 6th grade. Something Brian said today got me thinking about then and now and like many things, it is sort of stuck in my head for dissection and further pondering.

What Brian said was that Ms. Brooks was very nice looking. And how she really was one of the few teachers who seemed to "get him". Stephanie had her then and Brian had her three years previous.
She apparently has an ankle tattoo and I had been teasing Brian that after all his treatments are over and he's fully recovered, he should think about getting a zipper pull tattooed above his abdominal scar. (He's feeling like no young woman would ever be interested in him because he has cancer, and all these surgical scars and other issues....)

Brian has so many things going for him, he is astonishingly intelligent, passionate about so many things, and most importantly he is incredibly valiant. Rare things in a young man his age. (Don't get me wrong, he's got lots of short comings, but when faced with the facts that he could easily die ( and might) from his cancer, and/or his treatments, it's way easier to see how wonderful Brian is and how much I would miss our daily banters, arguments and discussions.) And while I will deny this to my dying day, he is smarter then I am now DAMN IT.....but not nearly as clever..YET...

the wheels on the car....

GO round and round....

Faced with the M,W,F blood count trips, we decided on a slightly different solution to to the long trip back and forth to the cancer clinic at Lehigh. We went to the "local" hospital lab and they fax the results to the oncology Dr....

so instead of 135+ miles we make a 40 mile round trip. That's a super solution if it works and the hospital faxes the lab results promptly. I'll know by Monday and hopefully it will work.

Tomorrow we still need to drive down to Lehigh for a 2 minute neulasta injection, but to NOT do it would be risking too much.

I used about $147.00 worth of gas driving just back and forth today.(Correction that's actually driving all this this week...I had today in my head because I refilled the gas tank..) Guess that will use up that yearly assistance from the lymphoma society in one week...( got to finish that paperwork too) yikes...it's crazy thinking of 2+ months of this before even heading to Hershey for the transplant which is 127 miles one way from here.
Something to be said for how close we were last time to the hospital. I got new tires last april right before we moved...wow am I glad we did ...

This morning when I got up, we had a nice little happy snow frosting all over things. Very cool, We all are still excited with the happy morning snow...not sure that will get old, but we love snow.

After the trip to the hospital for labs, I stopped at the grocery store, Brian wearing his mask came in to walk around a little and figure out what he felt like eating this week. We normally eat a lot of raw food, fruits and veggies, but with his counts falling we'll probably blanch those veggies.

One of the side effects that Brian is noticing is a problem with his vision. I am not sure yet what that means, we'll certainly discuss it with the doctors. He also has numbness in his hands and feet. That we expected, he already had permanent damage from the vincristine he received before. With that, the immediate concern to making sure the shower water temp isn't too hot, so I adjusted to temp on the water heater so I didn't need to worry about that. Bet Scott's the first to notice....(he already hates the electric water heater)

We're off early tomorrow to make our 9:00 am appointment. Brian went to bed early tonight, he is feeling sick, so he took his medications and headed to bed. If I was smart, I'd no doubt do the same...right after a couple of loads of laundry and pet chores.

Special thanks to my friend Sandi and her furbaby Sophers for their kind donation.

Home, glorious home....

When I arrived at the hospital today, Brian was totally packed up, closet emptied, recycling lined up (yes, even when in the hospital eco-boy recycled). He'd gotten the nurses to get his discharge papers even at the last drop of chemotherapy was dripping into the bag.
He even showered once his port was deaccessed...

Now, I can't say I am surprised, even when he was on chemo before, he always had one foot out the door. But he would be cranky and generally unpleasant and with the exception of a few of the nurses (who really got to know him) they were glad to see him go.

The new Brian leaves me looking for air like a fish out of water. Charming, pleasant, communicative...who knew when I was teaching him manners he was actually listening. I was stunned, shocked and quite frankly down right impressed. After all...Brian does has aspergers as well as cancer.

We had some "issues" to deal with, the hows and whys of getting the prescriptions filled being the main one. While two were covered under the $4.00 Walmart plan, the zofran and the levaquin are very expensive. Crazy expensive on the zofran, but I knew that already. After all I donated tons of it to the cancer clinic when Brian finished chemotherapy years ago, and it was about $4000.00 for a months supply. It's less than that now, but still very expensive. So I had 2 choices (and not getting the medication for Brian was NOT one of them). I used my "one time only" and had the drugs filled at the hospital's expense, but I only get to use that one once, so I am taking the chance that he will need them again before the medicaid paperwork gets finished and he can hopefully get some rx. coverage. But in the meantime, I will definitely be Ebay(ing) for that next time. Just as soon as I get 5 minutes....

Tomorrow we have to go back for labs, then saturday we have to go back for a neulasta injection. (That is the solution to the previous mentioned neupogen problem), then labs again monday, wednesday, friday....next week...
so each drive back and forth to the hospital is 135 miles....sigh....did I mention how insane the drivers on rt 33 are??....
see these are the as always crazy unexpected expenses...(my car does not get very good gas mileage, but I love it anyhow) gas here is $2.79gal ( today) (AND I HAVE TO PUMP IT MYSELF???) okay first big thing I miss about NJ.....
oh well....it will work out cause there just isn't another option...

I promised Brian lunch on the way home from the hospital...it's always our standing deal...he gets to go out to lunch on the way home from the hospital and he doesn't complain about the rest of the time he has to stay home and can't go out in public or he has to wear a mask. And he doesn't complain about the hospital food too much.... (trust me, it's worth the lunches)
So naturally he wanted MEAT....he always did before and it seems this time with the chemo it is the same...he really craves protein. So we stopped at Texas Longhorn Steakhouse. We never ate there before, but except for Brian's lunches, we don't eat out very often. (Stephanie works in a restaurant and certainly doesn't want to go out to eat..). Anyhow in this economy it's not really in the budget.
The food was good, and the wait staff pleasant. Brian enjoyed his steak, although I know he is fighting nausea, but he never did let that come between him and his food. I know he enjoyed the outing.

He took a stroll about the court when he got home, took a quick walk outback in the woods a few feet (supervised he was starting to feel weak and tired). Then he pretty much crashed in front of the TV until he went to bed.
He'll start to feel more tired in the next few days...and I'd expect to start to see the hair thin as well. I have a feeling that might be more of an issue then it was last time...just a feeling....we'll see...
But it is good to have him home. Very good.

Special thanks to Joyce who sent him a little electronic yahtzee game. Great for those times that even travel yahtzee can't be played....like on the drive back and forth the hospital...
Special thanks to Susan V. at the hospital for helping get the prescriptions today.
Special thanks to the nurses and techs and aides at the hospital for taking care of Brian.

Midweek report....

too tired for much. the long drive is wearing me out a lot more then I expected it to.
Brian is tired, pale, bored, sometimes feeling sick and the chemo today made him so agitated he needed to be given a tranquilizer.

His chemo will finish late tomorrow afternoon. if all goes well, he can come home tomorrow night.

7c15a

Weird title?...Actually it's Brian's room number of the deluxe accomidations at Leigh Valley Hospital.

I was torn between rainy days and mondays and those crazy PA drivers, so I just went a different way entirely.

Our Day started at 8:00 am when the hospital called to see if Brian could come in earlier for his surgery to put in the portacath. Which we would have been happy to do, had they called an hour earlier, but even rushing around to get out earlier, we only got there about 15 minutes before our regularly scheduled time.
Dr. Mosca put in his port. Then he went for xrays to make sure of placement, then we were off to the Dr.'s office. Which we were running late for because of the time we were at surgery. SO they skipped the office visit and sent us right up to the hospital room. NOT quite as nice as the previous room, this is the official "Hemotology Oncolgy" floor. But we've had worse and everyone is very nice.
(I really can't get over all the nice at this hospital....they really are nice people.)

Labs got done, and hydration started, but no chemo until about 10am tuesday morning.
Scott and I stayed until 9:30, had a miserable drive home, in the pouring rain and am headed to bed now so I can get on the road by 8:30 to be there in time for chemo to start.

SO today's good news/bad news....the good news is that the lymphoma is NOT in his bone marrow. Bad news is that the tumor that was removed is growing back quickly. Very quickly...not entirely unexpected, but dis concerning none the less.

ON a twisted humor side of things, I was once again (I know, I hang my head in shame) amused when Dr. Shah asked Brian about sperm banking....what can I say....I laugh at all the inappropriate things. Can't take me anywhere....

Ready or not here it comes....

Tomorrow morning we leave about 8:30 for the hospital. It is going to be a long day and it is quite possible that I won't be able to update until tuesday.
I'll see if I can update from my phone at the hospital if I get the time.

Today didn't go very well. I woke up late and not feeling well. Compounded by the fact that I undeniably have a urinary tract infection. And while I can not remember the last time I had one, the signs and symptoms are well just really hard to miss....I have no idea where I can fit a doctor's visit into this week (pretty ironic since I'll be sitting at a hospital) I will tank up on cranberry juice and see if that helps, but I think based on the amount of blood I peed out today, I am going to need an antibiotic.
Naturally I didn't get all things done here, but it's not like they are going any place.... Brian had to have his last meal before 8:00pm...so naturally he wasn't hungry...I told him to eat anyhow...but NOOOOO...so about 10 minutes ago he came and told me now he was hungry....can't win for losing.

There was a time when all of this would have really stressed me out immensely. I would have stayed up getting things done, been upset because he didn't eat worried about the drive tomorrow...the car..the traffic..the idiot drivers..the fact that I am going to a different hospital first for the surgery...but I have learned...I have experience...now I am taking a xanax with a glass of cranberry juice and going to bed.

catch you all tomorrow...

Spring Equinox and Chemo info...

Today was a gorgeous day. The perfect kind of day to welcome the spring equinox. Normally we welcome spring by starting our little seed greenhouse and cleaning out the birdhouses. But this will not quite be a normal spring and my birdhouses were new last summer and not inhabited, so they don't need their spring cleaning.

As temped as I was to dig my hands into the compost soil and plant seed packets, I resisted, because I don't think, in fact I do know there will not be time for that kind of gardening this spring.

I washed and packed some pj's, and a blanket for Brian. He's always happier in normal clothing even if we have to modify some tshirts for iv lines. He's sensitive to touch and needs no tags, and soft material, so it's good to have those things ready to go. He'll also sleep better with one of his blankets and pillow, so everything got a fresh washing then packed to go.

I made some dinners for Scott to take to work...then put them in the freezer. Makes things a lot easier when those things are done.
When Brian got chemo last time, we made a huge effort to eat dinner at the hospital together each night, but Stephanie was only in middle school then, and now she'll be a work at dinner time, so it's not really feasible. But I know she'll eat at work, so that's not a worry.

Our neighbor Jim came over and he and Scott fixed the radiator leak on my car, and gave it a tune up, since I'll be putting about 150 miles on it each day this week back and forth to the hospital.

We have to be at the hospital by 10am monday morning, then at the cancer clinic at 1:30 which I doubt we'll be on time for), so I kind of doubt he'll get the chemo started until late monday night. Since I am not yet familiar with how they will give the ICE chemotherapy protocol, I have to find out when they will give which drug. I absolutely will be there for the etoposide because it can precipitate in the IV line, and it also made Brian's blood pressure crash last time he got it on the CHOP protocol. ( Which for Brian is now considered failed) Hopefully they will give that tueday and I will actually make it home to bed monday night, but we'll see....
I already know where the hospital cafeteria is, and all the hours it is open, so it looks like cafeteria dining for me this week. woo hoo...I know I am excited...

Just Fabulous Friday

It was a beautiful day here, the sun was shining, the birds were singing, there was a delightful cool breeze flowing in the window, and next to me I could feel the gentle warmth of one of my favorite kitty cats next to me in the bed.
I'd just had a dream about cooking meatballs and I woke swearing I could smell garlic.

Then I really woke up and reality hit me. Brian's cancer, and chemo and....It sort of set the tone for my mood for the rest of the day. Gloomy with a chance of Bitchy.

As organized as I try and be, as familiar with this as I am, make no mistake, I am really, really pissed off that Brian has to go through this again. (and really pissed off we all do, but mostly for Brian's sake).

Every once in a while I will give into those cranky feelings and everything will bother me. A stupid piece of clothing, someone who said they would call and didn't, something I needed to get done and didn't. The dog barking. Unfortunately what happens is weeks worth of little things build up and.... pop....., I'm looking for the remnants of my brain on the ceiling fan.
It's just never a pretty sight, scooping up brain matter, trying to get it back into my head....with a turkey baster....
SIGH.... SIGH..... SIGH........

I can't even go freaking shopping to work off the stress....it's wrong I tell you, just wrong....( and I don't really like shopping anyhow).

what I'd like is a bottle of acetylene and my torch.....and some copper scraps....and a chasing hammer...

I'm temped to take tomorrow off from my self imposed work schedule of 1000 impossible things to get done and make some art.
And I would...if I wouldn't be even more stressed out about not getting done what I want to get done....

ah yes, see, this is how crazy things get sometimes....
Life sucks Damn it...
hey but I live in Pa and fireworks are legal here...maybe I can just blow something up...that would make me feel better.....humm......

please tune in tomorrow when the control freak rational part of my brain is back on line and in control.... :)

Special thanks to Karen for the card and the check, your note was really touching.
Also thanks to Dawn for the card, and the gift cards... Brian is especially thrilled with the best buy card.(I'm sure it will go towards a video game)
Also thanks to Donna for the travel yahtzee game, an important thing for next week...for sure.

so many things to do, so little time

With the countdown started to the first round of chemo, it leaves me with a limited window of time to get a lot of things done that need to be done before Brian comes home from the hospital.

The good part is that I know exactly what I need to get done that will help limit his chances of infection during the neutropenic period. And he will be neutropenic probably 2-3 days after his chemo ends. and that will be the case for a up to a couple of weeks, then when his blood counts recover, he'll get chemo again, then be neutropenic again, etc..until we get to transplant time.

So needless to say I have a giant list of things I ideally want to get done. But like most of my infamous "lists" it is probably impractical since Scott and Stephanie also have to work, and Brian is too tired to help with a lot of the things.

Today almost all of the rest of our snow and ice melted, so I went and dug out the rest of the christmas decorations so they can be packed up and put away tomorrow. How far away christmas seems now. How quickly the excitement of our first christmas in the new house changed to worry and fear.

I also worked on putting a lot of things in cabinets. Things we might normally have out in the kitchen like canisters, or decorative items...I know that dust will not be a good thing, and the less there is for dust to collect on, the easier it is to clean and keep bacteria and fungi down.

We also have to get all the hepafilters out. We had one for every room last time Brian got sick, and when we moved here, a couple got stored in the attic, (we already have them in the bedrooms) so we need to get the others out, and we actually need probably two more due to the open configuration of the house. I do believe at least for us, with all the pets, it does make a big difference in running them.

I know that some of you wonder about the pets, so I am going to make a blanket statement about them right now....do we have a lot of pets...yes we do...does it make more work and more chance Brian might get exposed to bacteria that could make him sick, yes it does.
But our pets are our family. They are what gets us through situations like this, and since the truth is Brian very well might not survive his battle with cancer, I would never take away or prevent him from being around his fur family. And the doctors are not really concerned with the pets. Their primary concern is pulmonary fungal infection. It is my concern as well since Brian already has a chronic skin fungal problem left over from the previous chemotherapy treatments.

tomorrow I am going to go grocery shopping and make all the meals we need for next week, lasagna and chili and stew and some soups so they are already to go for us. It will make it easier for Scott to just grab a container to take to work, so for me to bring Brian some food, because I already know there is NO way he will eat the hospital food. It might even take me into saturday to get all that done.

On Sunday we're going to scrub down all the surfaces in Brian's room, and pack for the hospital. I will get the call tomorrow letting me know what ungodly hour we need to be there for monday morning.
This is exactly how I stopped sleeping last time, but this time around I know better, and I am very careful to make sure no matter what, I get at least 6 hours of sleep.
What gets done, gets done....I can't get that wonder woman bustier up over the fat roll anymore anyhow....

labs

Here's a copy of Brian's blood work from both when he was in the hospital and the day he had the PET scan.

It is a good comparative to see how his blood cell counts are going to change once the chemo starts. Some of the difficulties come from how the chemotherapy works on the body. It is the reason that Brian may need transfusions of blood and/or platelets and why the neupogen is important.

we'll be dealing with "neutropenia" low white blood cells...which means he can not fight off infection.
as well as "thrombocytopenia" low platelet count ...which means he bleeds easily and has serious problem clotting.
Also "anemia" low red blood cells...which means the body isn't getting enough oxygen and other things.

I am most concerned about Brian's need for platelet transfusions. He had quite during his treatments before and he became quite reactive to them. But we will just have to see what happens.

Right now, his blood work looks good, and he's physically in a good place to start chemotherapy. Things change quickly while on chemo, so we'll try and enjoy the rest of the week.

That reminds me...got to get Scott to make sure that carpet shampooer has soap and a "tune up"...because while there are many good medications for chemo patients now there is also always vomit.

Better to plan ahead....I HATE CARPET....

St. Patty's Day

Happy St. Patty's Day....

One of Brian's favorite dishes is corned beef and cabbage, so in truth we have it a lot more then once a year.
My tricks to making it delicious is to boil the potatoes and cabbage along with the corned beef, and to add a little pickling spice (cloves, bay leaf, etc) to the water.
It always fills the house full of delicious smells.

Brian is having some pain today, I don't know if it is from the cancer or from the surgery, but it is new pain, and doesn't make me happy. I am quite sure it doesn't really make him happy either.

I hit up the redbox for a few movies so he can relax in bed and watch them. He did take an RX for the pain, which is NOT like him, so he must be quite uncomfortable.

last night he was very agitated and kept me up until about 3am making lists of things we "have to have" for after the chemo. It seems like a combination of anxiety, pain, apprehension etc.. have brought on a full blown bout of OCD....we'll have to deal with that if it continues, Brian hasn't needed medication for that in about 6 months, and I don't know how that will correspond with the chemo, but the doctor's are aware of the issues.

I worked on the neupogen issue today for a while, thanks to Jean for all the helpful links. Still have quite a few more phone calls for tomorrow, but it seems that we have a back up solution if we can't get the neupogen to give a home...it will hardly be ideal, but nothing in these cases are ideal.

I got the oil leak fixed on my car, it was a BIG ordeal, the transmission had to be taken off, and had to be done by a mechanic, but at least it is no longer spewing oil everywhere as we trek back and forth. It does seem like my NEW radiator also has a small leak, which really annoys me, but hopefully that can get resolved on saturday.

The dogs got to spend some time outside today, it warmed up to almost 60, and Brian wanted to sit outside and play ball with Piggy, but he just didn't feel up to it. I hope tomorrow he is feeling better and it is warm as well. The dogs really make him happy. He loves to play with them.

My deer was here for food today and his front leg is hurt now, last summer his rear leg was hurt, and I haven't seen him in a few weeks. He's bigger and obviously still as klutzy. He didn't come to the window like he usually does, but he wandered all over the front yard until I saw him and threw him a carrot. He loves carrots and banana peels.

And so it begins.....

On Monday....early no doubt.... we will trek off to the hospital to have surgery to implant the portacath.
The oncology people worked very hard to squeeze Brian's surgery in last minute so we could get chemo started later monday afternoon.
It will be a complicated day. The surgery is done at one campus of the hospital "downtown" and then we will have to trek "uptown" to the other campus for the doctor's appointment then get admitted for the chemo.
The picture shows where ports can be placed. Since Brian's already had a port on his right side, the surgeon will most likely place it on his left. Especially since the area where the old port is moderately covered in scar tissue but even after all this time, the skin is very thin there.
The port allows for repeat blood draws, and corrosive chemotherapy agents (yes, CORROSIVE) to be injected directly into the vein. It has many advantages when there is a need to access a vein regularly.
Brian will start his first round of chemotherapy late monday and will likely be in the hospital until thursday.
They expect to do 3-4 cycles of chemo at this time. Each cycle is determined by Brian's bloodwork and how quickly his cell counts recover, but we expect them to be about 3 weeks apart.

As I suspected, it was also necessary for us to be ready to make a decision on a transplant hospital. Which is why we took as long as we had to discuss and investigate our immediate options.
After many hours discussing with a variety of doctors, social workers, hospital coordinators (both finance and otherwise) we came to one conclusion that was impossible to ignore.
If we chose to come back to RWJUH the possibility that we would have to delay treatment to work through the bureaucracy of state to state paperwork was a real possibility. One that we just felt we could not risk.
Today's additional news that we may have to consider an allogenic transplant as well, we decided that the transplant will be done at Hershey Medical Center.

Our next obstacle will be to address how we can manage the neupogen costs which are not covered by the hospital ( and are huge) since they are done after discharge and will not be covered by medicaid even when that does start. It is a big obstacle that I will be working on all week, so should anyone have any good ideas, references or suggestions, please send them along.

I will admit that it was some what unsettling to hear the words salvage chemotherapy even though I knew that is what it is.

Brian took all of this stoically, only with the comment that obviously the cancer hid out and was not gotten entirely last time.
I feel a storm brewing and while I sigh at it's arrival, I also welcome it. I have been concerned at Brian's calm acceptance. I know that it was his anger and determination that got him through the ordeal of last time.

Special thanks to Jean for the note, and Itunes cards. It was very sweet of you to remember Stephanie when sending them, and she really was thrilled by her inclusion.
Also thanks to Scott's sister Donna for second donation. With the medical bills already over $7000.00, that is really important.

I haven't quite gotten the internet from the computer issue worked out while we are in the hospital and we don't have the budget to add a wifi card to our cell bill, so we'll have to see how we can work around that issue.

PET SCAN results

Here is a copy of the PET scan results. Although the PET scan did not show enlarged mesenteric lymph nodes, they were observed on the CAT scan...

REM+-+Shiny+Happy+People

REM - Shiny Happy People
Uploaded by damned78. - See the latest featured music videos.

Today's musings

Today was a grey and raining day. One almost predetermined for pondering and self reflection.

It's almost impossible to say that we don't feel some surrealism that Brian's cancer has returned. Because in truth, we had just about gotten to that point where we thought that enough time has passed that we could stop living in fear, waiting.
That is some kind of twisted ironic-ism. I guess the three hags of fate are laughing right now. Damn Hags...

One of the biggest pitfalls we need to avoid right now are the "if onlies". It's really easy to get bogged down in them.
If only we didn't have A,B, and C to get done...If only D....not only are they depressing but worse yet they can sap your energy like a leach. Energy you can not afford them.
They are legitimate things, but they need to be addressed carefully...I find that trying to simply them is the easiest way to hand them. Easier said then done for sure, but essential to remaining focused, in control and with a semblance of organization.

See Cancer or any other serious life event doesn't care if your car has to many miles on it, or you have a partially done bathroom project, or even if you have older pets that require more diligent care...it does what it wants, when it wants and the best way you can cope is to simply have enough money to hire someone to solve those problems.
HaHaHa...
For the rest of us, well, we just have to be happy with doing the best we can under circumstances that can be really hard to understand.

This is one of those rare instances where sometimes it is really good to be a control freak. Oh, and did I mention that a twisted, sarcastic, demented sense of humor is really important??
That and a recording of "happy shinny people"

rescue redux...??

Last night I was feeling a little panic.
It happens to the best of us, even if we are reluctant to admit it.

Sometimes it is sneaky and sometimes it just will hit you square splat right in the face.

We'll discuss the cause of the panic later on when I have the PET scan report in front of me and I know for sure what the Doctor was telling me, was indeed what my brain processed it out to be. (More on this after Monday's oncology appointment).

I was online getting ready to sell some things so I can try and get Brian the PS3, that I know will not only make him happy, but will also help focus his anger and agitation and is just a good thing to have when you are facing so much in hospital time. I know this only too well from when he was getting chemo last time. Video games are invaluable. Probably the only time a parent begs their child to play video games.

Stephanie called me on her way home from work. Sometime between 1-2am...she'd stopped because she came across a small injured buck on the side of the road. She asked if I could come help her get him up on his feet and see if he was alright. So grabbed a blanket, some fluids to help with shock and a rope, and off I went.
By the time I got there about 15 minutes later, she'd already gotten him out of the road, on his feet and with a little encouragement and no doubt a granola bar from her purse, he was trotting off on his own into the woods.

It reminded me of a similar incident years ago when Brian had just started chemo. On the way to the hospital, we found a little baby bird on the sidewalk. He'd been blown out of his nest from someplace. So we put him in a soft container, got some food supplement for him from the pet store, and I'd sit with Brian, then go dropper feed the bird, then go back to Brian.

Needless to say, the deer took my mind off my panic, reminded me that we are all connected to that thin thread of life and fate.

Perhaps Cerridwen felt my need of distraction and needed to help an animal and had sent the baby bird in 2001 and the young deer last night.

I really didn't do much either time, but both things happened at a time when the distraction was a good way to channel my fear and nervous energy in a different direction. Coincidence? maybe...but a good one.

Bone Marrow Biopsy

"Bone Marrow Biopsy"....kind of even sounds ominous....certainly doesn't sound like "Trip to water park" or, "let's go for ice cream"...

so needless to say Brian was not nearly as enthusiastic this morning as he was yesterday morning. Now, Brian has had TWO Bone Marrow Biopsy's before...so he was not incorrectly suffering from a lack of enthusiasm.

We were however scheduled for early this morning and the procedure was done and over in about an hour and a half. The oncologist removed a good sampling of the bone marrow fluid then basically took a plug of the bone as well. The results will be back in 1-2 weeks. The results will not change the next stage of treatment which will be to start the chemotherapy.

Brian was assisted by two very cute young nurses and Scott and I both remarked to him (later of course) about how impressed we were with his behavior. I'm sure the need to be brave and impress the ladies had NOTHING to do with it at all.

We stopped on the way home to pick up some lunch and groceries, but by the time we got home Brian was quite tired.

I have some recent lab stat to scan and upload later for those who are following his blood work. Everything looks good now, and you'll be able to see how that will change once chemo starts.

Special thanks to Dawn for her kind donation and to Joyce who understands better then most and send Brian a card which he enjoyed receiving.

Thank you also to Lynn, Mohamed, Eileen and Jean all of whom have offered to open their homes to us to stay if we go for treatment at RWJUH. That means a lot to me and I know what a great offer that really is. I will let everyone know once we decide on a hospital. We are going to drive out to see Hershey Medical Center
I know the oncologist we are currently seeing sends all his transplant patients there. But we are still undecided yet as to the right place to go.

Our day at Great Wolf....

Yesterday was our trip to Great Wolf.

by mutual agreement, there are no bathing beauty photographs. Actually, I don't have a water proof camera, so it really was a mute issue. However we did take this nice picture with Steph's phone on the way out.

We had a wonderful time. It was the very best way we could relax, have fun together and mentally recharge for the next few months of hell.

We swam, we went down slides, we floated and we soaked (in the biggest perfectly heated hot tub ever...I could simply live in that it was SO wonderful). We had a great time. The water was perfect, the temperature perfect and best of all, we didn't have to worry about sunburn. (and for us, that is a big issue)

We were totally exhausted last night and the best thing of all, was a 10 minute drive and we were home to our own beds :) yes, and some sad little dogs that acted like we had been gone for a month, not 6 hours.

Brian was smiling and happy and really had the best time. I haven't seem him smile since the day he felt the mass, and it really put him in a much better place mentally to face the next bout of procedures.

Tomorrow first thing is the bone marrow biopsy. In the previous bone marrow procedures, he was a child and now he's an "adult", so he has to have the procedure with a local anesthesia and not a general. Not a pleasant prospect and it does hurt afterward, so he is a little apprehensive. Knowing what to expect is both a blessing and a curse.

What mother wouldn't give anything to trade places with their child. I can't tell you how many times I have wished that I could do that, so he didn't have to go through this.

Special thanks again to Ilene and Great Wolf Lodge for making the trip possible. It made all the difference in the world. It really gave us something fun to look forward to, and something fun to continue to talk about when things are a bit grey.

Pride goeth...

As I was trying to figure out my living accommodations for the 30-100 days that Brian will be in the hospital, I was of course making MORE phone calls.

I've logged in 3 straight days of non stop phone calls. Blah...my butt hurts from sitting in the office chair.

But I digress...so back to accommodations. Brian is too old (by 2 years) for me to do the Ronald McDonald house thing...but I did call and speak to a very nice person about that anyhow. I was saddened to hear that she has a waiting list at the one in New Brunswick (if we go to RWJUH). It is a sad thing when so many children have life threatening illnesses.
We really do need to stop poisoning our environment, but that this topic would cause further digression, so I will stop.

I made some more phone calls to Hershey and Univ. of Penn, all transplant hospital options. I am trying to get all my questions answered by Monday in case we are ready to make decisions and start treatments. I know that is a very real possibility. I also know that once the decision is made, there might be other options that at this time I can not get answers to. But like the good girl scout I once was, I prefer to be prepared. And I have no problem sleeping in the car if I run out of options.

But I did send out emails to our friends in the Hillsborough area to try and line up some last minute options. I can't even begin to describe how distasteful writing that type of email is, or even asking for help on any level. It is well, just YUCK...but I know there are just some things we can't do without help. Even if I do not want that help. I was thinking of how much this hurts my pride and I know from last time as well. Because Stephanie had asked me to look up a word on dictionary.com (she's been playing scrabble with a friend) I thought, heck, let's look up pride since I am hemorrhaging mine right and left.

The meaning left me with a bad taste in my mouth. I think I can be okay without so much pride, it really isn't as nice I thing as I had thought it was, at least by definition in any event....

Cancer really doesn't leave anyone who is touched by it with pride, not Brian who has to endure medical exam after medical exam...full of things that are unpleasant such as rectal exams, spinal taps and bone marrow aspirates. Not to mention to poisons pumped into his blood stream and those side effects... (And just ask him how he feels about them...go ahead..I dare you....just buy some ear plugs first. He has a whole dialog about how the cancer is not in his ass....)

It doesn't leave us with any pride either, sometimes I feel like we might as well stand on the corner and pan handle...but we do what we have to for our children, no matter how distasteful it is. MINT ANYONE???


Special thanks today go to Scott's sister Donna for your kind donation, and to
Lynn R. for the box of books and kind note. Thank you both.

four little, five little, six little phone calls....

Well yes, today is a uniformed failure all around.

I understood (sort of) when I spoke with some of these groups when Brian was first diagnosed in 2000. We had health coverage from 3 jobs and made almost twice our current household income that despite huge expenses, because of our income and health insurance we were unlikely to get any help...

However...

Interesting in a sad way that with no health insurance and half our previous income, so far we have not garnered assistance from any organization. When we of course need it the most. Ironic?...Sad?....or perhaps a shining example of government failure (and I do not support the Obama health care plan even with all this.)

We do not qualify for assistance from the HealthWell Foundation according to their "short" online form.

We have filled out the form from the Patient Access Network and got these results

Non-Hodgkins Lymphoma Fund
Application Process

Thank you for your interest in the Non-Hodgkins Lymphoma Fund of the Patient Access Network (PAN) Foundation.

Based on the information you have submitted, we are sorry that you do not qualify for assistance with this fund at this time.

If you have additional questions for PAN or if your circumstances change, you may contact us by phone, U.S. mail or e-mail:

Patient Access Network Foundation
PO Box 221858
Charlotte, NC 28222-1858

1-866-316-7263

and last but NOT least...Lymphoma Research is mailing an application to be considered for reimbursement of some medical expenses....SO we haven't immediately struck out there....we're just in a holding pattern for snail mail process.

It's official...after a day like today..I need CHOCOLATE....

One little, two little, three little phone calls

Oh yes, the great cancer assistance run around. I'd forgotten...sort of... Some people who have never actually gone through this process actually believe that the cancer organizations are there to help people with cancer. But I disagree. And I can say that because I have personally experienced just exactly how much help you can get.
For example...
I filled out the leukemia and lymphoma society financial aid form this morning. At least the part that I can fill out. I have to take it to the doctor with us on the next visit so he can fill out his part. Then it has to be mailed in and processed, then I can submit my expenses and be eligible for up to $150.00/per year. That's it...and if treatment lasts longer then 1 year, that paperwork needs to be filled out again. Wow, now don't misunderstand me, every single dime helps. We have thousands of dollars of medical bills already and Brian hasn't even gotten his first round of chemo much less gone to transplant. SO I'll take that $150.00, but I really have to work for it.
So after I filled out the LLS paperwork, it was on to the American Cancer Society phone call. I spoke with a nice young man who took down all my information then asked me how he could help me?...DUH??
So I explained to him that we were interested in counseling, medical bill assistance and help with transportation costs. He gave me 6 additional places to call (including LLS, so I guess really just 5) then asked if the Cancer Society could contact me in the future....(that would be no doubt to solicit a donation) SO what help did I get from calling them?...oh yes right..more places to call. But so far..no help....

Now, I have to ask myself, at what point does the obviously microscopic assistance make up for the fact that this is at least 2-3 days worth of work and there does not seem to be any concrete commitment to receive any type of assistance what so ever for that invested time. Time I could be spending with Brian, time I could be spending with Stephanie, even time I could be spending further researching transplant hospitals......hell, I could be listing things on ebay and making more money to help with the expenses...
This is a frustrating process that so far has been fruitless and I have been at it for hours....spilling my name and phone number and financial information out all over, not a bit intrusive ..

Okay..back to work...on to CancerCare...I'll keep you posted.
But here's a tip....your donations to cancer organizations don't go to cancer patients...maybe it goes to research...but I'd ask what % actually is used for administration costs next time you write check.

Thanks to Grandma for the heated blanket and the rolling cart. Both VERY helpful. Brian will be cold after the chemo and our rolling cart barely survived to the end of treatment last time, but saved us running back and forth to the hospital parking garage by allowing us the schlep everything in at once. And being 10 years older and more tired, less trips are very good.

Sending Brian cards and visits

Some of you have asked about coming to visit Brian, Brian would love cards, but he doesn't want visitors at this time, and he won't be able to have them after the transplant for a while. When he feels like being social perhaps we'll plan a picnic or something low key.

Brian McColgan
3606 Heather Lane
Tobyhanna, PA 18466

How it feels

Wednesday a good friend sent me an email.
In that email she remarked about how she didn't know how I could deal with everything going on and how I seemed strong and in control. She also said that she knew I must be hurting and if anyone saw that side of me.

I answered her in my typical glib fashion and in doing so, I realized that I did her a great disservice. (one of many, I make a lousy friend) She asked the tough questions because she cares. Because she knows what it means to be a parent that loves their children more then anything else.

I did her a disservice because I have allowed her into my life enough to know I DO keep those things out of sight and out of reach.

My daughter wears her heart on her sleeve and I have frequent conversations with her about that, and about not doing so. But she is her father's daughter, and I love them both very much for that.

So, to address those questions in a more honest way...I seem strong and in control, because I know only too well that there are serious pitfalls if I don't. When Brian was first diagnosed with cancer in Dec. 2000, There was a period of about 3 weeks where we lived in a fog of disbelief...we moved from point A to point B because that is what the Doctor's told us to do. We missed important things that later on we played catch up to get up to speed on because of that. So when Brian had surgery and I knew the biopsy was going to be cancer again, I determinedly hit the ground running because I wasn't in a fog, or shocked and I knew the pitfalls of not doing so.

As to my feelings. I once a long time ago described the pain of finding out your child has cancer, as a cutting pain, that you didn't realize you could feel. You can experience pain and loss and it can be hard, but this is not like anything that you can really express in words.
There is nothing to do in my opinion but to work through it. I think sometimes there is nothing more I'd like to do but collapse in a heap in a corner, but I can't..I don't mean I don't want to, I mean I am emotionally and physically not capable of that sort of outward display. It does not however mean I do not feel that way on the inside. But I learned a long time ago that those unchecked emotions allowed a vulnerability that I am not willing to share with anyone.

Anger I can express, way too easily, but anger is like a drug addiction, it eats you from the inside out, and you only want more, and I have learned to walk away from the worst of my anger. That took me most of my life, with lots of back stepping, but it is the best gift I could give myself.

Brian doesn't express himself very much either, and I worry about how he feels. He is way too accepting of what is happening to him right now.

Special thanks today go to my good friend Lynn for her paypal donation, with the PET scan, it came exactly at the right time.
also thanks to grandpa for the hepa filters, one of which arrived today, those are invaluable in helping Brian to stay healthy during treatment.
Thanks to Ilene who has graciously arranged for us to take Brian to Great Wolf on wednesday to have a fun filled day before his bone marrow aspirate on Friday, that is a superb gift that allows us to spend a wonderful day together as a family having fun, but still be close to home if he gets too tired.

PET scan et all

Brian had the PET scan done today as well as blood work. We did a ton of paperwork as well. The people are very nice at Lehigh Valley Hospital. We were gone about 9 hours and we are both exhausted.

Stephanie had a bag of Swedish fish for me and a lovely cleaned house for my birthday waiting for me when I came home. Yes, I know the Swedish fish are bad for me, and no, I don't care.

Scott had a flat tire on the truck and had to deal with that so he could get to work...never rains but it pours.

Too tired to write anymore tonight, we'll get caught up some more tomorrow.

a bit of cheer in the mailbox

Brian walked down to the mailbox today to get a little fresh air, he's been feeling very tired and his side has been hurting from the tumor removal.

He was thrilled to find a couple of get well cards in there. They really cheered him up. But no netflix ...guess they are a little delayed due to the snow. I know we didn't even get mail until yesterday when maintenance dug out the mailboxes....

(Super big shout out thanks to Sue and Joan for those cards...JUST what Bri needed to cheer him up.)

Last night we got another inch or so as well....I know that Brian's pretty disappointed he and Steph can't go snowboarding, or even just roll down the rather large snow pile left by the plows at the end of the driveway.

They are going to "officially" stage the cancer tomorrow after the results of the PET scan are in...but based on the tumor in the rectus sheath, as well as mesenteric and mediastinal lymph nodes, we expect it to stage out at at least 4. When Brian was first diagnosed in 2000, it was also stage 4+...so it won't be a big surprise, but nor it is very good news.

recurrent stage 4 lymphoma is difficult to cure.

Not exactly the birthday present I was looking to receive...but we will deal with each thing as they come.

the pit falls of treatment without insurance #1

Well, we've just run into our first complication. I knew there would be problems, just didn't know what they would be since when Brian was in treatment last time, between Scott and I we worked 3 jobs and had 3 different health insurance policies.
This time around, Brian is too old to be covered by Scott's policy and we only have 1 job...so we applied for medicaid, but that is the state, and it takes time to process...

today's surprise was the fact that the hospital is requiring us to pay for the PET scan up front, they won't wait for payment from medicaid...
so what do you do....it's not like we have that amount of money simply sitting in a bank account...and it's not like Brian can wait to have it done until we either save the money or the medicare kicks in....what a crappy dilemma to have to deal with, on top of everything else.
Now in order to be able to afford to get Brian the treatment he needs, we will apply for reduced cost care, which will reduce the amount we need to pay up front for a PET scan.

Brian's scheduled to have the PET scan on Thursday, and blood work, then have the bone marrow aspirate, on Friday 3/12... that as a child, he was given anesthesia for, but as an adult will have to endure with just local anesthesia ...OUCH....and painful after wards as well, as we already know.

So our schedule is now..
3/4 meet with financial counselor at cancer clinic
3/4 PET scan
3/4 Blood work (labs)
3/12 Bone Marrow Aspirate
3/15 Appointment with Oncologist

no doubt there will be other things to schedule in there as well, but the main focus now is getting things set up to run automatically at the house once I am gone for the transplant. I also need to get in to see my doctor so all my medications have enough refills on them in case we are gone the 100 days instead of the 30...