Monday, June 29, 2009

Our "Medical Calendar"

Well, gang.... July is almost upon us.  We're gonna hit the ground running on the 8th of July.

*July 8th-  Outpatient appointment with Radiation Oncologist for "measurements".

*July 9th-  Outpatient treatment of Kepivance....

Kepivance is used to reduce the chance of developing sores and ulcers in the mouth and to shorten the time with sores or ulcers in patients with blood cancers who receive high doses of chemotherapy and radiation therapy before bone marrow transplants.

*July 10th-  Outpatient Kepivance

*July 11th-  Outpatient Kepivance

*July 12th-  (referred to as Day -5) Admitted to Tulane.  Chemotherapy using Melphalan......

MELPHALAN (Alkeran®)

Melphalan is a chemotherapy drug that is given as a treatment for some types of cancer. It's mainly used to treat multiple myeloma, melanoma, ovarian and breast cancer.

*July 13th-  Day -4   RADIATION morning and night

*July 14th-  Day -3   RADIATION morning and night

*July 15th-  Day -2   RADIATION morning and night

*July 16th-  Day -1   RADIATION morning and night

*July 17th-   Day 0    STEM CELL TRANSPLANT  Also referred to as "Dom's New Birthday"

Wednesday, June 24, 2009

Tubing on the Bogue Chitta

Well, Christine, Richard McM and I really whooped it up on Monday.

Got to the Tubing joint around 9am, hopped on the van to take us up-river, then made our splash around 10 am.

Had a ridiculous amount of beer for the 3 of us.

Spent EIGHT HOURS on the river.  Stopped for awhile at every "beach"....smoking, drinking beer, giggling, gossiping, etc.  Had a delightful time.  It was great fun to blow off some steam after a few extremely stressful months.

Ended up at the L&C for a quick one, then picked up Popeyes for home.  

Yesterday, Tuesday, I stayed in bed until early afternoon.  Christ, did I get FRIED.  Had chills, sweats, nausea.... all the fun stuff from sun-poisoning.  HAD A BLAST!!!!!!!!!!

Home Health Nurse came yesterday afternoon to take blood culture (?).  Checking to see if the Staph Infection is gone.

Our patient feels pretty darn good.  Back to Tulane for the entire day tomorrow.  Blood Work, as well as a repeat of all of those tests from about a month ago..... skeletal, brain, heart and lungs.

Sunday, June 21, 2009

A Very Pleasant Weekend

Happy Sunday, gang.  All is well here.

Yesterday, the three of us ventured into Bogalusa to have a few beers with the Saturday L&C crowd.... all of the usual suspects were there.  Earlier, Richard McM called us, offering to spring for a cab to come and get us....if Dom didn't feel up to driving.  We love that man.  A dear, true friend.

So, caught up on the local gossip, then headed over to Maria's for some pretty decent food.  Dom and I had the chicken fajitas.... brought more than half home.  Christine did a cheese quesadilla, thought it was "OK".

We're dying for the Mexican joint next door to the L&C to open...They're looking at July 1st.  The place is called Yo Yo's.  Had a tiny little place in Bogy, and ended up buying their new building from the owner of the L&C.  Unfortunately, when they open, I'll be a "Metairie Girl", but can always try take-out from time to time.

Today, Sunday, is Father's Day.  Christine is going to make blueberry pancakes, bacon and baked cheese grits for her dad tonite.  Sounds fun.

Dom finished his 10 days of IV antibiotics a few minutes ago.  Home Health is swinging by tomorrow to draw some blood to confirm that the Staph Infection is gone.  *she types hopefully*

Hope y'all have had a lovely weekend.  Ours has been just great!

Thursday, June 18, 2009

Biloxi VA Hospital and The Shed BBQ/Blues in Gulfport

Hi gang-

We had a VERY pleasant day.  Left here around 7am, with Dom's IV drip all hooked up.  Pulled over into a parking lot in Biloxi.  Waited for the cops to show up as we both put on our masks, flushing his lines, wrapping his pic line with that stretchy stuff.  Too funny.  Must have looked like we were getting high.

Had a 10:30 appointment with Dom's VA Oncologist, Ginger Rogers, MD.  Really.

She's a little doll.  Very likeable and got very excited for us after telling her that the transplant/apartment was right around the corner.  Asked us to fax her bloodwork, or just call to say how he was doing.  She was probably about the 50th person to tell Dom that he was "LUCKY TO HAVE SUCH A WONDERFUL LOVING WIFE".  Our patient is growing rather weary of all of the accolades directed towards yours truly.

Left there and stopped at THE SHED.... a BBQ/Blues joint in Lyman, MS.  (North of Gulfport)  They were celebrating their one year anniversary... turns out they were on the Today Show this morning... (raving about their BBQ).  Cute, cute place.

Sat at the bar.... ice cold beer.  I had a 1/2 pound brisket sandwich topped with cole slaw.  Dom had the Red Beans and Rice with Sausage special of the day.  Delicious.  Too bad it's so far away from our home.  We've passed this joint many times.... glad we finally stopped.  (Got out of there for about 30 bucks with plenty of leftovers for dinner)

Theoretically, we're "done" with medical stuff until his Aredia transfusion next week.

He's got 3 more days of antibiotic drip, that will hopefully knock out this staph infection. 

All in all, it's been a great couple of days!  

Tuesday, June 16, 2009

Everything Seems to be Falling into Place- Thankfully!

Hi gang-

Things are groovy here.  All is well.  Dom is feeling well, I'm having no problems with administering meds, and Christine has been a wonderful help to her 95 year old grandmother.

I just returned from securing the Gatehouse's last 1 bedroom apartment.  I'm absolutely tickled.  It's the floorplan that I wanted with the open kitchen and balcony off of the bedroom.  Nice and shady, too!

I was happy to see that nobody uses their pools.  Can't wait.

I'm going to call my sanitizing guy soon and get his thoughts on when to have him do his thing.... I'm thinking right before Dom gets sprung from Tulane.  I'll trust his judgement, as he's dealt with many cancer victims.

Heading to Biloxi VA for obligatory visit to their Oncologist on Thursday.

Richard McM is coming out to see how Dom wants the "lawn" cut in our absence.

Tentative date of July 12th for his admitance into Tulane, with transplant 5 days later....after 4 days of radiation, twice per day to wipe out his bone marrow.  *cringing*

Keep the good thoughts and prayers coming, guys.... you're working wonders and we love you for it!

Friday, June 12, 2009

Today, Friday- Home Health and a Smiling Patient

One of our Home Health Nurses came over today to administer the antibiotic.  She taught me how to do it.  Tomorrow's nurse is going to supervise while I do the deed.  Tulane wants us to "save" Home Health visits for "emergencies"....  I'm feeling like quite the nurse these days!  Just call me "Nurse Nan".  Hell, at this rate, I'll be "Doctor Nan" in no time at all!

Dominic has been smiling all day.  First time for days.  His shoulder is still killing him from the Central Line screw up, and will be getting Home Health physical therapy for it.... tore up his muscle tissue or something.... very little mobility without pain.

So..... all seems well for now!  Have a delightful weekend, gang!

Pic Line, Discharge and Radiation Consult

Hi gang-

Our patient is home, safe and sound.

I spent the night at Lovely Linda's on Wed.  Had the whole house to myself.  'twas heavenly.

Got to Dom on Thursday morning to find that they had placed a Pic Line in his arm.  Took xrays of it to be certain of its' placement, then discharged him.

Dr. Lewis walked us over to the Cancer Center for our noon appointment with the Radiation Oncologist, Dr. Elnaggar.  Sweet gal.  Spent about 30 minutes giving us acute reactions to radiation... nausea, fatigue, reddening of skin.   Then went into POSSIBLE long term scenarios.... Cataracts in 10 or 15 years, Pneumonitis (inflamation) of the lungs,  creation of a secondary cancer, you get the idea-  Christ.... I haven't cringed so often in my life!

He is going to return on July 8th to get "measured" for treatment... height, weight, etc.

Left there and stopped at Picayune Drug Company for Home Health supplies-  saline, Heparin and 10 "bulbs" of Vancomycin (antibiotic drip).  Been working with the owner, Andrew.  Lovely man.

Wednesday, June 10, 2009

Dr. Lewis Got in Through the Wrist.

The love-fest is back on.

No need for surgery for a central line in the groin.  After this staph infection, we're very leary about new holes poked into our patient.

Going to stick around here to feed him dinner, then split around 5:30 or 6 pm.

Dr. Lewis wants antibiotics NOW.

Dom has grown quite fond of Dr. Lewis.  I'm afraid that the love fest ain't gonna last.

Since they can't put the pick in until tomorrow, the good doctor tried to go in through Dom's neck....twice....without luck.  It was cringe inducing.

Now, they're going to try the wrist.

If that fails, a surgeon will put ANOTHER central line in his groin.

Staph Epi Infection- 1 More Night at Tulane

John Rink just came in for a chat.

They've determined that this is the "staph epi" bacteria.  Common.  Lives on everyone's skin, but found it's way into Dom through the central line.

This from WebMD:

"MRSA that is acquired in a hospital or health care setting is called hospital-based methicillin-resistant Staphylococcus aureus (HA-MRSA). In most cases, a person who is already sick or who has a weakened immune system becomes infected with HA-MRSA. These infections can occur in wounds or skin, burns, and IV or other sites where tubes enter the body, as well as in the eyes, bones, heart, or blood."

I'm ASSUMING that it's MRSA, as when I did a search for Staph Epi, it brought me to the above information.

It's resistant to antibiotics taken by mouth.  So, tomorrow, they're going to put a "pick" (pronounced that way) in his arm tomorrow.  Antibiotic IV, send him to the Cancer Center across the street for his Radiation Consult, then cut him loose.

They're ordering Home Health to administer antibiotic upon our return home.

Did I say how crazy I am about this John guy?????  I called Amy asking her if she could get him up here.... within a minute he appeared.

Spending another night in town..... Christine is holding down the fort in Mississippi.


Hi gang-

Presently in Dom's room sipping on a latte and grooving on this free WI FI with my laptop.  What a change from dial-up!!

Not too much to report.

John Rink, the man I really love, came in to talk to us yesterday afternoon.  He had just met with the infectious diseases doctor.  Told us that the same bacteria showed up both in Dom's blood AND urine.

They'll be able to identify it today, learn of it's sensitivity to antibiotics, and treat it from there...possibly sending him home with pills today.

He's still on an "all purpose" antibiotic drip, potassium, and got 2 units of blood last night....that freaked me out, but they told me it was no big deal... he was low on something.

He began losing his hair on Monday morning.  When he got out of the tub, he said it looked like he had given the dog a bath in there.  Poor baby.... mustache, eyebrows, his sexy chest hair.... all going, but will grow back.

If he's stuck here another night, I'll probably spend the night at Lin's again and have Christine go home to get mail, feed the critters and spend the night.  I'm SO GLAD that she's here to help us.

Tuesday, June 9, 2009

Staph Infection

Well, as Dr. Culasso said, "ants have showed up at Dom's picnic".

I've got alot of catching up to do. Firstly, let me say that our patient is resting comfortably after being admitted to the hospital yesterday.

We had to report to the Apherisis department for stem cell collection at 8 am on Friday. They collected for about 6 hours. Got home at 8pm.

Had to return at 8 am and had another 8 hours of collection.

Spent the night at Chris' house. He cooked us a lovely dinner.

Reported back at 8am on Sunday (my birthday). They were having a hell of a time trying to open up one of the lines. Finally, at noon, they announced that they had enuf stem cells and we could go home.

Meanwhile..... Dom's collar bone had been killing him. He was also running a temp on Sunday morning..... almost 101. They talked about admitting him, but eventually temp dropped to normal.

They removed to central line, to find that it was screwed up.... digging into his collar bone. Then, they understood why he had been in such pain.

Each day after collection, they run bloodwork which they get read the next morning.

So.... got home early on Sunday and had a very happy birthday. We were tickled to have completed another step of our adventure.

Dom and I slept in yesterday. Took luxurious bubble baths. Laid in bed watching TV. No sooner had Dom said, "Oh, honey- isn't it wonderful to be at home? We don't have to do ANYTHING until Thursday", the phone rang.

It was the cancer center saying that Sunday's bloodwork showed an infection, and Dr. Safah wanted to admit Dom. The 3 of us gave out a collective groan.

They put him back in the Bone Marrow Transplant unit, which is great....nice and sanitary. Did a chest xray, hooked him up on an "all purpose" antibiotic drip and potassium for his painful hand cramps.

We should find out today what type of infection he has. They think it's a staph infection from the stupid central line, but until they know exactly what's up, they're just using ordinary antibiotics.

Christine and I stuck around here (hospital) until 6pm, then headed home.

I got back here at noon. Christine is running her grandmother around today. On the way to the room, I ran into John Rink.... (who I assisted with the bone marrow biopsy months ago) *grinning* Love the man. Anyway, he said that Dom might be going home tomorrow. I still don't know what the hell is going on, but will report when I know something.

I'm spending the night at Lovely Linda's tonite. Dunno much else.

Friday, June 5, 2009

BINGO! The Stem Cell Collection has Started!

Hi guys!

We spent hours and hours at Tulane today.   8am until 6:30 pm.  It was an emotional roller coaster of "Yes"....then "NO"....then "Maybe".... then "NOW".

They hooked Dom onto the super-machine for about 3 hours today....  heading back for 8am tomorrow morning.  (Christ!  Yet ANOTHER 5:45 am morning)

Figuring he'll be hooked up for at least 8 hours tomorrow.

Christine is here..... didn't get home today until after 8pm.  She's sticking around.  We're spending the night in Metairie, as we're sick of driving, and there's a possibility that we'll have to return to Tulane on Sunday (my 49th birthday) to finish the collection.

Alot of stuff happened today, which I'll catch you up on.... but.... FINALLY it's happening!  Have a groovy weekend, friends and family.  We love you.

Thursday, June 4, 2009

Leukine, White Blood Cells and Stem Cells

Well, I just hung up the phone with Dom's Amy.  (As opposed to Nan's Amy in Ohio)  She said that we'll be getting another shipment of Leukine delivered tomorrow...... just in case.

She'll test his blood again tomorrow morning.  If the stem cells aren't there, we head back in on Monday morning.   They want to catch them during the right time of the cycle...  I laughed and said, "Well, I guess he's worth all of this running around".  She replied, "You're fixin' to find out just HOW MUCH you like him".  Funny.

I asked her about White Blood Cell counts.  Monday was .6   Wednesday was .4  Theoretically, when they drop down to "nothing", the Stem Cells will burst onto the scene.  She also went on to say that they could run 10 bloodtests on him during the same day, and the counts might be all over the place.

Been on a semi cleaning-frenzy.... for both health reasons, and the fact that Christine is flying into town this afternoon and will be here tomorrow night or Saturday.  Yippee.

Wednesday, June 3, 2009

No Luck Today- Back to Tulane on Friday Morning

Hi gang-

Well, Dom's Stem Cells are NOT cooperating with us.  Went to NOLA this morning for bloodwork, only to be sent back home an hour later.

They want us back again on Friday.  That'll be the 3rd attempt this week.  Perhaps the third time will be the charm?

Dom is moving pretty slow today.  Doesn't feel too well, so had me do the driving.  He called me "Mario" on the way home.  *smiling*

Christine flies in tomorrow.  As of now, Dr. Safah sez "NO" to a casino visit in a couple of weeks.  White blood cells are down.  .4  Have no idea what they should be. 

Tuesday, June 2, 2009

Home Health, Christine, Radiation Consultation and Bloodwork Tomorrow

Hi gang...

Things are rolling along here.  We're starting to feel quite organized, and not as overwhelmed as in the past.

Heading back for bloodwork in the morning.  Would LOVE to be able to have them collect tomorrow-  If not, probably back in on Friday.  I'm getting really good at sticking him with the Leukine needle!

A sweet Home Health nurse was here earlier.  Insisted on shaving Dom's chest before re-dressing the wound.  Nice, nice kid.

Christine is flying in on THURSDAY for 3 weeks.  Yeah!  It'll be great fun to see her, and she'll be a great help with her 95 year old grandma in Slidell.  Christine, if you're reading this, I've got our martini mixings ready, honey-girl!

Just hung up the phone with the Cancer Center.  Dr. Elnaggar to meet with him NEXT Thursday for a "radiation consultation".  Apparently, she's going to be his radiation doctor.  Honestly, Tulane seems to really have their shit together..... like a well oiled machine.  I'm happy that we ended up there.

Monday, June 1, 2009

Not Much to Report Today

Hi gang-

We had nurses stop by on Friday and Sunday to redress his wound.  I'm giving him his Leukine without a problem.

We were at Tulane at 8am for bloodwork.  A couple hours later, Amy informed us that the stem cells haven't moved into the blood stream yet.  Nor have new White Cells, so his immune system is compromised.

We have to return on Wednesday morning to try again.  Hopefully they'll be able to collect them then.

She's checking with Dr. Safah whether or not we can get a room in a Biloxi casino on the day that we go to see the Veteran's Oncologist.  Christine is flying in on Thursday for 3 weeks, so we'd like to whoop it up a little bit!  

Dunno if I mentioned this already.....  Dr. Culasso said to have a bottle of water in between every couple of beers.  We don't want him fainting again!  Too much sun and fun!