3/25/11 HOME!!!!!! and the experiences

Yes, we arrived HOME in Stone Mountain, Georgia at 5:30PM on Thursday, March 24. There is a story to tell what happened to get to this point.

On Tuesday Joe and I spent the day in the studio apartment organizing and packing what we thought would fit in the Lexus on our drive home. We had to throw out a bunch of stuff.

The day was filled with so many phone calls back and forth all day long with the MDACC Case Manager and eventually Applied Health Care who works very closely with MDACC. They have the expertise working with health insurance companies. Medicare does not cover Home Care IVs which I knew already but Joe's United Health Care from AT&T covers it up to 90% which was preliminary confirmed by Applied Health Care. They work with them on a regular basis. If we had just Medicare, we would have to go to the hospital everyday to get the IV. It would be difficult to leave Houston which would make Joe an unhappy camper. By the end of the day we got a call from the RN Naomi who would be coming to the studio apartment the next day to teach me how to prepare the Eraxis IV and give it to Joe. She told me that the medicine and all the supplies would arrive by 10:30 AM on Wednesday and that she would come to us at 9AM.

I knew that I had to have a good night's sleep on Tuesday so we both headed to bed early. To help me relax and turn off the brain and emotional charges, I took a Xanax and it worked. Joe got up first so he took Max out and went to Panera and got take out for me. I took a shower to wake all my cells up. The day's agenda did not start well with Naomi being 30 minutes late because of the historical Houston rush hour traffic which crawls at a snail's pace. Since it is the norm for Houston, Naomi should had left home earlier. She started with telling me what everything was. Oh my, there is so much stuff to learn and do! I stayed alert to make sure I understood everything that she was telling me. The ERAXIS comes in a separate sterile refrigerated package along with a huge syringe, a needle, saline solution. There is another sterile package with the tubing, reservoir, regulator, on and off roller contraption. Among the other items that I needed were latex gloves, alcohol wipes, scissors, a large hook to put the ERAXIS, and more heparin as well as antiseptic hand lotion. Naomi spent an hour and half teaching me with the hands on approach. Shei was a great thorough teacher. Naomi got a call from her office to tell her the method of preparation is different which freaked me out. Once you intensively learn one way then you change it, it is difficult to keep things straight. She told me that I was going to have to mix the medicine together. I would be given two sterile bottles as well as a saline IV bag with two entries. One entry will be flat and the other has a blue rubber cap on it. Here are the steps as well as I remember them.

1. lay out all your supplies on paper towel on the table in the order you will use it.
2. wash your hands for 15 seconds and dry them with a paper towel. It is best to take off all your rings,watches and bracelets before washing.
3. Put a small amount of antiseptic in your hands and ring your hands till you got it all over. Let it dry completely on its own.
4. Put on the latex gloves
5. Put the sterile needle into the HUGE 30 ml syringe
6. Remove the metal bottle tops of the ERAXIS and Bacteriostatic Water
7. Push the needle of the syringe into the Bacteriostatic Water with the bottle up in the air and the needle only a little bit into the bottle. Pull the Syringe handle down to where there is a bit more than the 30 ml of the water in the Syringe so when you let up a bit, the air will be removed.
8. Take the syringe of water and push all of it into the rubber top of the ERAXIS. When finished place the plastic cover back over the needle that protected the needle.
9. Gently shake the solution until the ERAXIS is completely dissolved.
10. Take the protective off the needle on the syringe and push it into the dissolved ERAXIS bottle with the bottle upside down with the needle showing only a little bit to prevent air from entering into the syringe.
11. Pull hard down on the syringe handle till the syringe in filled to 30 ml.
12. Take the IV bag that has Sodium Cloride Solution in it with the nozzles hanging down. Wipe with an alcohol swipe on the nozzle that has a flat top.
13. Push the Syringe in the ERAXIS solution into the flat part of the nozzle till all the solution is in the IV bag.
14. Turn the IV bag up and down several times to assure the ERAXIS is mixed in completely.
15. Unwrap the EZ Regulator and Tubing.
16. The part of the tubing that has a long white top to it with a clear reservoir is the part that goes into the IV bag.
17. Assure the on and off roller switch is in the OFF position which is rolled UP. The liquid will not flow into the full line yet
18, Take the white plastic top off the tubing and then remove the blue rubber tip off the other nozzle on the IV bag then push the end into that nozzle tightly.Assure the on and off roller switch is in the OFF position which is rolled UP. The liquid will not flow into the full line yet.
19. Now you must squeeze the reservoir until it is half way full.
20. On the regulator turn the knob counter clock wise till it it passes the 300 mark which means it is wide open.
21. Open the line by pulling the the roller all the way down.
22. The ERAXIS will flow into the line. All air must be out of the line. You can watch the air bubbles make their way to the end of the line. It is good to have something to let the liquid drip into as the air bubbles make their way down. This can take awhile but be patient.
23. Wipe the PICC line you are going to use with an alcohol swipe then flush the PICC lines with Sodium Cloride Solution.
24. Remove the plastic cap off the end of the IV tubing and place it into the PICC line.
25. Open the PICC line.
26. Place the regulator at 83 (between 80 and 86).
27. Open the Valve by rolling the roller up.
28. The IV should be working by seeing a little drop out of the IV bag into the reservoir.
29. It will take about 90 minutes for the ERAXIS IV to finish. Once the reservoir in empty, it is done!
30. Close the PICC line. Close the IV line. Remove the IV from the PICC line.
31 Take another Syringe of Sodium Cloride to flush out the used PICC line and remove the air by pushing the syringe up.
32. Open the PICC line
33. Use an alcohol swipe to clean the PICC line.
34. Very slowly push the Syringe of Sodium Cloride into the PICC line.
35. Take a Heparin Syringe and push it up to about 3 ml and get the air out.
36. Place the Heparin on the PICC line and slowly push the Heparin in the line.
37. Throw everything in the bags away. None of it is reusable.

Now, this is what I remember. It is very possible that I left out a step or two but now you can see how overwhelming it can be for a caregiver who already has enough on their shoulders.

Meanwhile Dr Romaguera calls Joe on his cell phone. I have no idea who Joe is talking to or why since my mind has been focusing on learning how to do the IV. He tells us that Joe must come back to Houston for a follow up and tests on April 6 to re-evaluate his Fungal Pneumonia and if the current medication is working as well as the medical staff to determine what next. It is very doubtful that the fungal infection would be gone so soon. We had thought that we would not have to be back at MDACC until 4/27 but there was a change in the plan at the last minute. We decided that Joe would fly back to Houston on his own the day before and come home the evening after he was done with all that needs to be done. Dr Romaguera said Joe needs to get a weekly blood test at home and be examined by Dr Winton or his PA each time. My mind is running wild with thinking of all that I must set up, the flights, hotel, Houston transportation, the blood tests and exams in Atlanta.

Now it is 12:30 CST and the medicine and supplies still has not arrived from Home Health Care. Now the hotel's front desk calls me and asks when we were checking out since it was pass the check out time and the maid needed to clean the room. I explained that we were waiting for the medicine and supplies to arrive. Meantime Naomi was having the both of us do some massive paperwork. Heck we still had to pack the car and drive halfway to Atlanta mostly by myself. The circuits inside my brain short circuited since I reached the max that I could handle. I really wanted to postpone us going home until the next day. It was too much for me to handle. Joe insisted on heading home. Finally, I said to Joe and Naomi that I was STRESSED. I removed myself from the room and went to the bathroom where my tears flowed and the lump in my throat was about to burst. I stayed there about 5 minutes and came out. The deliverer of the medicine and supplies was finally there. On my goodness, there was two large white bags of supplies and one refrigerated box of ERAXIS. How in the world were we going to get all our stuff and all this medical stuff in our car with room for Max to lay down. Some more tears ran down my face as I slowly calmed down. The deliverer leaves after Naomi did the inventory of the massive amount of stuff. It was overwhelming. Naomi gave me her cell phone to call her if I have any questions and we hugged each other good-bye.

Now to get to work with packing the car! I gave the front desk the leftovers in our refrigerator from ice cream, juices, desserts, cookies, candy and four 12 packs of diet coke since there was not enough room in the car to take them. Joe got the luggage cart and took the first two carts to the car and did his best to get what he could in the trunk. I tried to get the hotel to store our HP printer when we came back on 4/27 but the manager said no. In the back seat of the car, I got my luggage cart full of stuff which had the refrigerated box of ERAXIS, the printer, a plastic file container of records, a laundry basket, my pillow, Joe's laptop bag, a cooler filled with diet coke, Max's food and water bowl, a large bag of whatever junk of mine. Joe was astounded that I was able to get it all in there with plenty of room for Max to lay down and be comfortable. I was drenched in sweat from working so hard. At 12:50 PM CST we were on our way with me a bit breathless. Joe asked me if I was OK. I told him not yet but after I get on the road for about 15 minutes that I would be fine. I was. Joe's job was to keep me happy with my Diet Cokes as I drove to Slidell which is about 6 hours and 15 minutes from Houston. I drove all but one hour. We checked into La Quinta Inn off of Interstate 10 in Slidell about 7:30 just before it got totally dark. Thanks to Yelp and Trip Advisor I found a restaurant with a great Louisiana Cajun/ Creole atmosphere located on a Bayou and only 10 minutes from our hotel. The place was called Palmettos on the Bayou where the meal was great with prefect tasty tender flash fried oysters with a creamy horseradish sauce that we shared. Joe and I also shared a cup of some tasty award winning Seafood Gumbo. Our main dishes both had a Creole flavor to the meat which was a little bit sweet. Max enjoyed some delicious left overs from Joe's large fillet and my french cut pork chop. The smashed spiced potatoes were very flavorful but we could only taste it since we had no more room in our tummies. We sat outside on the large patio with strings white Christmas lights in the trees and fence. Joe was a bit cold so he borrowed with the waiter's approval a white tablecloth to put around his shoulders.

We got back to the hotel about 9:30 CST and we were both asleep by 10:00 PM CST. No surprise there with the stressful long day.

We got back on the road to Atlanta at 7:45 AM CST. The drive was about 9 hours with a lunch break in Montgomery. Joe gave me an hour and a half break from driving. He did quite well.

It was about 5:35 PM EST when we got home. When I got to our subdivision, I drove really slow to savor the ambiance of the beginning of springtime in Atlanta. Atlanta in the springtime is what heaven must look like with so many white mature dogwoods in bloom or about to bloom. The pink azaleas were popped open in all their glory. The red bud trees and plum trees were bright in color. The hardwood trees were just getting their leaves. The Crabapple trees had pinky pink clusters of blooms. I drove even slower up the hill of Musket Court to our home. OH MY! It was picture perfect. Our reseeded lawn was lush and thick and Irish green. Mr. Moody has just mowed and edged our lawn and it looked like it was sodded. It is how we dreamed our lawn would look like someday and here it was before us. The four Japanese Maples that I had planted last fall had all the leaves and looked so healthy.

Max jumped out of the car before Joe could get a foot out. Max was happy to be home also as he ran to the garage door into the house. On the kitchen table was a note from our co-ed next door neighbor, Emily Bennett, who left a welcome note to all three of us. She bought us some bananas, apples, wheat bread, English Muffins, Fig Newtons and plump muffins so our cupboards would not be bare. Joe and I are so blessed to have such amazing neighbors.

Joe and I unpacked the car right away because we knew if we did not, it would not get done that night. The medicine had to be placed in the refrigerator. I lugged the heavy stuff upstairs since Joe does not have the strength to do that. We decided to go to dinner right away since we knew if we sat down on the couch that we would not move. Sangria's Mexican Restaurant was both our choice since it was close and we wanted their tasty Pollo Ranchero. The staff makes us feel at home there since we eat there at least once a week.

Once we got home, it was time for me to do the IV which started at 7PM and lasted till 8:30PM. I think that I did it OK the first time. I am sure in a few days I will do it like a pro. Sure, Bonnie!

Before we went to bed, I made Joe's flight, hotel and transportation arrangements for his next visit to MDACC on 4/6. I told him that since it was only one day that I thought he could handle it by himself and he said okay. Joe and I hit our king sized comfortable bed at Midnight. After laying there and saying my nightly prayers, I still laid awake. I got up and went downstairs and followed by instinct to make air reservations for me to go with Joe . God talks to us in various ways. I have learned to listen to Him. I used to call this instinct but I now believe that it is God directing me. As I was on my lap top, I went into some of Joe's lab reports since there are new results on a regular basis thus it is a good thing to keep checking my.mdanderson personal site. What I read, scared me! There was a cytogenectic results of the bone marrow stated that the deleted 13q chromosome was predominant which indicated persistent disease. My heart dropped to the floor and my heart raced. It sounded to me that deep into the testing of the bone marrow that the mantle cell lymphoma was rampart. I thought that it would be devastating to Joe to find this out after all he has been through. I fired off an e-mail to Dr. Romaguera to ask him exactly what this meant. Once he responded to me then I would discuss the dismal news with Joe.

Somehow by the grace of God, I slept and slept. I knew that I was physically and mentally exhausted but gee whiz, I did not wake up till 12:15 PM!!!!!!! Joe had been up for hours and Max was laying on the floor in our bedroom waiting for me to awaken from my long beauty sleep. Joe was in the garage cleaning the wheels of the Lexus, the windows and the front bumper where insects from the deep south and bayous took their eternal dirt nap.

I pulled up my e-mails and uh oh! Joe had opened Romaguera's response to the e-mail that I sent in the middle of the night. I braced myself to open and read it. Dr. Romaquera said that the persistent disease is the Myelofibrosis since Mantle Cell Lymphoma has nothing to do the the 13 q deletion chromosome. The most common chromosome that Mantle Cell Lymphoma shows up are numbers 11 and 14 which are transposed. Whew..............Thank you, Lord.

I told Joe that I had made air reservation for me to go with him to Houston the first week of April. He said GOOD since he does so much better with me with him. It makes him feel more at ease since I can ask the questions and make sure we stay of schedule.

It is important to me to advise everyone that Myelofibrosis is incurable and effects the bone marrow. The doctors state that we must conquer the Mantle Cell Lymphoma before we try to do anything with Joe's Advanced Myelofibrosis. I have deluded myself with hopeful thinking that maybe all the treatment for Mantle Cell would also help with the management of the Myelofibrosis. Joe is the only person in the world at this time with both diseases. I still pray that somehow the Mantle Cell protocol would help the Myelofibrosis. I hope that God forgives me for asking so much from Him but He gives me HOPE. I have faith that God will see us through all of these challenges.

The IV tonight went OK until the very end. Joe was in the living room watching his programs with the IV going and I was in the den,using the DVR to watch the programs that I missed with all the happenings in Houston. Joe came into the den and said the IV was done. When I looked at the IV line, I saw blood in the line. Oh My Goodness! What have I done and I panicked while Joe thought it was no big thing since he felt fine. I called Naomi, the IV instruction nurse and she told me that the IV was completed and the valve not turned off us the blood was sucked into the line. It turned out Joe fell asleep on the couch during the IV and went pass the 90 minute time. Stupid Me! I thought that he would stay alert. Next time I will set an alarm since Joe can not stay awake.

Enough folks. I have typed enough for one blog. This writing has really wore me out remembering all the stuff that happened which was like reliving it all over again. UGH!

Good night. Till next time!

Ciao,
Bonnie