9/30 - Packing started for trip to JH

Rough morning for both of us – meaning we were both tired when we opened our eyes as neither of us slept very well last night L.   I even took something last night to help me – what the heck??  Don did send email to Dr. Borrello yesterday to see if he could possibly take a sleep aid – haven’t as yet heard from him.  I honestly don’t think he will let him take anything. 

Our morning activity of flushing, change dressing, temp check and Don taking CIPRO – done.

Don has been busy going through the house and throwing things away – eegads!!!!  He gets in these moods now and again.  NOTHING IS SAFE believe me!!  He just commented “I’m sure I will look for something down the road and wonder where it is”.  YA THINK??? I told him before he threw anything away think carefully about it – might be something we could have passed on to the kids (probably not but maybe)!!!  Did a bit of cleaning out myself – Don was happy about that!!

Heard from housing around 2:00 pm – we can go up on Saturday but an apartment won’t be available right away L.  Hopefully it won’t be long before we can make that transition.  Already I’m thinking of how to transport food items to kitchen, prepare and get back to Don if he doesn’t feel like coming down to eat. 

Panic is settling in for me – just so many things to think about – what to take, what not to take, what food and other things to buy at the store prior to leaving and lots of other things.  Overwhelming emotions this morning sitting on the deck – tears started.  Not the first time but I seem to shake it off rather quickly because I know I have to be strong.  No time for tears – time to think positive and get it done!!!

Phyllis came by and we had a nice visit.  Mark came, as well, to bring Don the new sump pump – one thing he is worried about while gone but the new one will help ease his mind.

Going to get this posted – we will be packing more later – my to take list is growwwwing!!

Till tomorrow……….

Don & Muffin

9/29 - New meds and temperature monitored

9/29 – New meds today and temp check

Don had to start Cipro (antibiotic) today – 2 times daily.  Hoping his system takes it well and there are no bad side affects – we’ll see.  Cipro is a measure to fight off infections.   He has to start wearing a mask whenever folks come to visit or if we go anywhere there would be a crowd of folks.  He doesn’t like the mask at all – it just fits him so tight and is uncomfortable.   Need to remind him that it’s just temporary and he will get through this.  Need to take his temperature 3 times daily also and record times and temp.

A.M. - Flushing catheter – check

A.M. - Took temperature – check

A.M. - Cipro – check

Constantly writing things on our checklist for our trip to JH (6 weeks or possibly longer – pray it’s the shorter).  Hard to know what all to take and I’m sure once we’re there for that long we will be saying “should have brought this and that with us”.  No big deal though we have a wonderful family and they will bring us whatever we need.

We ran a few errands and now home – lunch for Don and rest a bit.  He wants me to help him tidy up the garage – SAY WHAT?? Haha – he just doesn’t want to leave it like it is – which btw looks fine to me *L*.

Did clean the garage some – didn’t finish to his liking but he was feeling quite tired so we went in.

Don rested for a bit – I fixed dinner (leftovers from the wonderful dinner my son and daughter-in-law fixed last night for everyone). 

It’s almost time for flushing – then bit later – Neupogen – and then temp monitoring.  I’m going to call it a day.

Till tomorrow…….

Don & Muffin

9/28 - An early post

Thought I would go ahead and get my posting out - family is coming over later - Mark and Sabrina <----my new daughter-in-law :) are bringing dinner for a bunch of us - can't wait!! 

Got up fairly early - not too too but early enough to keep our schedule for the catheter flushing - we will have plenty of "early" days when we get back up to Baltimore on Saturday.  Don did write our housing coordinator to see if it could be arranged for us to move in on Saturday instead of Sunday.  We have an early (8:00 am) appointment on Sunday so it seemed better if we could get settled in on Saturday.  Beats leaving Brandywine at 6:30 am to get there by 8:00.  Our coordinator will get in touch with us by Thursday to let us know.  Please keep your fingers crossed that they come through with an apartment for us instead of a suite.  The apartment has a kitchen and laundry facility right in the place - otherwise with the suite we have to use community kitchen and laundry room - so again, keep fingers crossed.

Don has had an okay day - he's not used to being tired so early in the day.  This is something, unfortunately he will have to try and get used to (as if he really can - he's always been a go-getter so this is definately a change for him).  We did go to Home Depot for a soft toilet seat - we just installed new toilet in new bathroom and he wasn't going to rest until we had a soft one *L*.  So mission accomplished!!!  Stopped at Target for a few things then home.  He ate lunch and is now taking a nap (or trying to anyway) so he can be rested for our company **so excited**!! 

Till tomorrow everyone....

Don & Muffin

9/27 - Return to Hopkins to check Sodium & Potassium

12:10 - Went to IPOP.  Our Nurse, Kyong took Don's weight and it was back to his normal weight - the 10 lbs he gained yesterday was gone (wish it was that easy for me *L*).  Took bloodwork to check the Sodium & Potassium levels which which up yesterday, thus the reason for the quick return today.  After bloodwork we have to hang around for about 2 hours - went to get some lunch and just to wait around - went back up around 2:05 - results weren't in yet so waited a bit longer.  While waiting we met our Nurse Practictioner, Kelly Sahl.  She will be our Nurse for the next 6 weeks - well she's pregnant so if she delivers early we will get a new nurse but for now she's ours.  She just talked to us for a bit - listened to Don's chest - and just answered any questions we had.  2:40 - results were in and his levels were normal and we were free to go *yippeee*

Wasn't a long day but long enough - Don was very tired when we got home and rested until I fixed dinner.  After dinner I gave him his Neupogen shots and at 9:00 p.m. had to flush the catheter.  Feeling very comfortable with those 2 procedures - tomorrow I change the dressing over the catheter - not at the total comfy stage but it's coming.

Don's watching a little football and relaxing - think it will be an early night for him.  Tomorrow the family is coming over and Mark & Brina are making supper - can't wait for that!!

Oh meant to mention before I started the days activities - Happy 35th anniversary to Don and me!!  Long time huh?  For sure, but here's to many many many more!!

9/26 - IPOP visit - and a new learning experience for me

Left Hackerman for our visit to IPOP - last day to stay until our return visit next Saturday or Sunday (not sure yet).

Had 12:00 appointment at IPOP - we sat there for a bit - a long bit actually.  I went to ask someone if our nurse Mary knew if we were there or not.  Turns out that person was Mary - she was surprised to see us - said our appointment was for 1:30 - ugh - but she took us anyway (thank goodness).

Took Don's vitals and bloodwork.  My new experience began as this was teaching day for me to give Don his Neupogen shots.  Was I scared?  You bet I was.  I tried not to think about it all morning because the more I thought about it the more anxious I was becoming so I tried to stay calm.  Umm that didn't work.  Anyway - Mary was talking about the shots as if I had done this before.  I was talking to Don and was saying I wish I had SOMETHING to practice on rather than him for the first time.  Mary heard me and say hey I can find something to help you practice - BLESS YOU MARY!!!  She did set up something and I practiced.  Then it was time for the real deal.  My biggest concern was not knowing how hard to jab the needle in Don's stomach - yeah sounds nice doesn't it?  Don wasn't the least bit worried - he had more faith in me than I had in myself.  I prepared the area and went for it - Don didn't flinch a bit - he said it honestly didn't hurt which made me feel sooooo much better.  Mary seemed very impressed and of course I had a huge smile and let out a big sigh of relief.  It really was alot easier than I had thought but her training session helped me immensely!! 

We finished up in IPOP and headed home - honestly can't remember what time that was but I think around 1:30ish. 

We got home and let me tell you - we were two happy campers to see our road and our house - and this was just being away for 3 1/2 days. 

Unfortunately we had a phone call from Mary sometime in the afternoon.  She said they had gotten Don's bloodwork back and they were concerned about the results for the Sodium and Potassium counts so we need to make a return trip on Monday at noon so they can take more blood and check it to find out if they need to give him something or not.  Don seemed really down when he heard this but he knows it's just what we have to do and I'm thankful they want to recheck everything.  Have to make sure things go smoothly and right and we will do what we have to do.

So back tomorrow which is, by the way, our 35th wedding anniversary!! :):)

Until tomorrow.........

Don & Muffin

Catching up - for Saturday 9/25 - cytoxan day

Started this very late last night - saved it and I can't figure out WHERE the heck the saved documents are so have to start over.  Not sure I'll be as wordy as last night - had typed an awful lot but will try to give you the gist of what I had already typed.

Saturday - cytoxan day

Arrived at IPOP (In Patient Out Patient) around 7:10 - well actually arrived at John's Hopkins main lobby.  Went in door and headed for coffee shop ONLY to find out it was closed - DISASTER - as neither of us had had our morning coffee - of course Don wasn't as stressed as me haha.  Decided to go on up to IPOP but Megan (our nurse) said you have plenty of time to go get some so over to cafeteria we went (bless you Megan). 

Got coffee and back to IPOP by 7:30 (our scheduled appointment time).

7:35 - Megan took Don's vitals.  Shortly after started the hydration process (2 hours) - Don had to give a certain amount of urine before they could start the cytoxan.  In preparation he also drank 64 ounces of juice and water.  Once it was determined enough urine was collected the cytoxan started at 10:30 - hydration was continued along with this.  Total time for hydration was 8 hours - total time for cytoxan 1 hour 30 minutes.  During this time he was given **Dexamethasone** (see note below) and zofran (anti nausea medicine).  The dexa had a bad affect on Don but he was familiar with it since he had had it with prior chemo treatments with his oncologist. 

During this process he also was given Mesna - it was to coat the bladder during the chemo process - he had 4 different dosages of this - during the entire process Don was being hydrated.  The last dosage of Mesna was at 6:15 and the hydration process was done by 6:30 so we were free to go.

Kristi and Charlie had came to see us at 2:00 and they stayed with us throughout the afternoon and well into the evening.  It was so good to have them w/us.  We went to dinner at Greene Turtle in Baltimore and back to Hackerman Patz by 9:30 - Kristi and Charlie left soon after that.

A long long day for all of us - Don was extremely tired but one of the side affects of Dexa is it keeps you wired so we were up to midnight at least.  The Dexa and the new neighbor who moved in last night - we heard his entire conversation on the phone through the walls - grrrrrrrrrrrr.

***Myeloma Treatment: How Does Dexamethasone Work?
Dexamethasone and the other steroids are useful in myeloma treatment because they can stop white blood cells from traveling to areas where cancerous myeloma cells are causing damage. This decreases the amount of swelling or inflammation in those areas and relieves associated pain and pressure.
More importantly, in high doses, dexamethasone can actually kill myeloma cells. When combined with other myeloma drugs, it can also make those drugs work even better. Dexamethasone and other steroids are sometimes used by themselves to treat the disease. According to the International Myeloma Foundation, dexamethasone is the most effective single agent for treatment of multiple myeloma when given in large doses. The risk of side effects is much higher at these doses, however.

Picture of the Catheter

Doesn't look very comfortable. Dad said it will take some getting used to.

Catheter placement day - 9/24/10

Don was up at 7 - I wasn't such an early riser.  I was closer to 8:30.  Neither of us slept too well - the beds are definately not "our bed" - and yes I did say beds - we have "twin beds" - somebody goofed *L*.  Although when we came a few weeks ago they said we could push them together - no energy to do that last night, maybe tonight!!

Got to Johns Hopkins (which is across the street btw) - Blalock 5 for catheter placement.  Took Don back 10:30ish to prep him.  Had to hook up IV for medication - just enough to keep him in a comfort zone so he wouldn't be in pain for the placement.  I was instructed to come back by 12.  I just went to get coffee - text my kids - and just get more familiar with my surroundings so I knew where I was and didn't get lost trying to get back to Don. 

Returned by noon with coffee and bagel for Don - when I went into recovery he looked great - said he felt fine just a little groggy which was to be expected.  His vitals were being monitored constantly - everthing was fine so they let us go from there.  Over to the other building we went.  Got more coffee and just waited for our 2:00 appointment in IPOP which stands for In Patient Out Patient.

While at IPOP I had to put clean dressing over the catheter and do a flushing of the lines.  I was nervous as heck - the tape they put on was stuck on Don's skin and I just didn't want to hurt him taking it off - he kept saying "I'm fine I'm fine" but I wasn't so sure.  Being my first time I was just a bit worried about hurting him and making sure I was doing all the steps correctly - it will definately get easier the more I do it.

Back to our place by 3 - had lunch and now just relaxing.  Don is on his computer and I'm blogging and have bills to pay in a bit - OH BOY!!

Hope we both sleep a bit better tonight - it's going to be a long day tomorrow.

Don and are both doing okay - just a bit tired and just preparing ourselves for the days ahead. 

96%...Not too shabby

From Mom Yesterday - Couldn't get the website to work last night.

Hopkins by 1:00 pm for Catheter teaching - the teaching lasted about hour and half. I learned as the caregiver to change the dressing where the catheter will be placed - and how to flush (clean) the lines of the catheter. This is all done to prevent any infection. The nurse teaching me said out of 100% she would give me a 96% - guess I did good huh?? Don's catheter will be placed tomorrow - they will go over what was covered today and I get to show them what I learned on the real catheter. I hope I can get a 100% and so does he!! Had a nice dinner at Cheesecake Factory and yes, of course, had to have a slice of banana creme cheesecake - hey it was Don's idea, honest!!

Housing came through for our short stay this week!

Okay my first blog - guess it would help if I knew what a blog was *L* - no kidding, I sorta, kinda know - anyway - blogging away here!

Housing called just now and we do have a place for Thursday, Fri and Saturday nights - this week - it was either there or at another place arranged by one of the coordinators.  We will be at the Hackerman-Patz building (the same location of our upcoming long-term stay).  Whew - was feeling a bit worried - but I should have known it would work out!

Love to all!

Muffin & Don

INTRO

Mom sent this as an email earlier.  I want to get her set up on this blog site, so I'm going to put this as the first entry and see how it goes.  Please come back here for updates on Dad's progress throughout the next few weeks.  I will keep it updated if Mom doesn't have time.  Please keep her in your prayers as well.  The caregiver's job certainly isn't an easy one. 

Dear family & friends,

Wanted to write you all to let you know how things are with Don and where we are right now.  It's been a long time I know and I know you all have been anxious to hear something.  As my last letter indicated Don's #'s that they were monitoring reached the point where going ahead with further treatments would not change the #'s that much, if any.  So treatments were stopped and plans are in full force for the stem cell transplant. 

Today - the 21st we went to see Dr. Borrello (myeloma specialist) to touch base with him to go over all the recent tests Don had to undergo for preparations of the transplant.  With the results being what they were Don is ready for the next step.  On Thursday (the 23rd) we will go to Johns Hopkins and have a class for me to learn how to give Don shots (which I will administer next week) - how to clean and protect the catheter they will put in place on Friday (the location for administering the shots).  Saturday (the 24th) Don will have a chemo treatment called cytoxan mobilization - the duration of this will be about 12 hours.  They administer chemo to stir up the stem cells in the bone marrow so they will go into his bloodstream (this is to get him ready for the stem cell collection).  We will stay up in Baltimore on Thursday, Friday and Saturday night and return home on Sunday.  At the end of next week Don and I will have a place in Baltimore - hopefully at the Hackerman Patz facility - unfortunately even at this late stage it is still up in the air but hope to get confirmation of that this week.  Our stay at that time will be approximately 6 weeks.

I am attaching the final schedule (well as of today the 22nd it is final - but that can always change).  This will show you all where we are in this process.  Kristi wants me to start a blog - if I can get that set up I will make updates on that and send you all the link so you can follow us through this journey.

Before I send this - I am sending you the website for the MMRF race that we participated in last year and WILL BE attending this year - we would appreciate your support either by attending the race - making a donation or both.  We are optimistic that Don will be attending this race and we want to show him all the support we can!!

http://321cure.themmrf.org/site/TR/RaceforResearch/General?team_id=7870&pg=team&fr_id=1133

Also Mark & Kristi are selling tickets for a lottery drawing.  Here is the information for that -  raffle tickets are $5.  Each ticket has a 3 digit number.  There will be a winner every day for the month of November. The winning ticket will be the MD Lottery Evening pick 3 number.  Total prizes $2500...and $2500 will be donated to the MMRF.  You can email Kristi for more information - kristimarie09@gmail.com - but definately sounds like a good way for YOU and MMRF to benefit!!  Gotta play to win!!

Okay everyone - sending this off - keep happy, positive thoughts and prayers as our journey continues.  I will send you updates as we go along either in the blog or emails.  Please feel free to pass this email on.  I tried not to leave anyone out but there were so many folks I sent this to.

Our family loves and thanks you all for your support!  If you have questions please write anytime!

Muffin