Spin Class

Sunday is usually a day of rest, and true to form, it was nearly a waste. I had my Neupogen at noon and took one tramadol. It made me sleepy and loopy. I managed not to crash right away, but had to lie down. I did get a bit of a nap, but it's hard to sleep when the room is spinning.

Weeee.....

Other than that it was a good day. I am feeling good and a cold front came through so it's nice outside. I got out for a little bit and enjoyed watching Annie and Dexter run around like crazy.

Dinner was wonderful.  Thank you Ross and Mary. We are so appreciative.

Tomorrow is an early clinic. I will ride in with Buffy and call Kent for a ride home when I am done. My type and cross match red wrist band expired today.  So if I need blood, they would have to do the test again. That takes about 4 hours. Then they call for blood and hang it. Another 2 hrs or so. I just can't see anyone having to sit around waiting that long if it is not necessary. It's boring, but I have plenty to do. Or sleep. 

So for now, no news is good news!

Approaching the Low

In clinic news today I got one bag of whole blood and a Monday appointment.  It took a while, but Darlene was a trooper and didn't complain. (Thanks for the ride, Dar!)

I am at .4 and should be at zero tomorrow. That means I am not making any blood cells at all. It also means I am neutropenic and have no immune system. To mitigate the threat of infection, I am on a whole series of pills and taking my temperature every 4 hours whole awake (98.2). At 100.5, I must call the on call doc who will probably send me to the hospital. Last time I had to go in because I was at 100.6. It was not surprising since  I wasn't feeling well. By the time I checked in the fever was down.

Today I started Neupogen, so I have the pain meds Tramadol and OxyContin at the ready.  Bone pain will not be tolerated this time. It will be destroyed! (Side Note: I do not take drugs. I have never had surgery or broken bones so I have not had any experience with pain medication. The bone pain has increased with each Neupogen series, so I will try the oxy with much trepidation. IF the tramadol does not work.)

I got confirmation that one more LP is necessary. My thoughts of being on the up in a week or two are confirmed, but I will still be on heavy restriction: no restaurants, no crowds, no Tybee.  I also learned that on average a person is immune compromised for up to a year after transplant (October 17). Ewwww.... Hope not.

So, this evening we will be having pizza and ice cream. That always makes us smile.

It's no Greek pizza on a Big Green Egg, but it filled the void. Plus, I am still trying to put on weight. I lost at least 14 pounds in May.  I am back to about normal weight. Today I weighed in at 120. (For Ken, that's 54.6 Kg!) Now I will continue to try and gain because I know there will be a time when I won't want to eat.

We continue the countdown to transplant, but I am in no hurry. Let's get past this low and enjoy feeling better before the next smack down.

Reclaiming The House

This morning when Kent got home we had French Toast and coffee on the deck.

It was nice to just chill for an hour or so. And of course, the conversation steered toward what we want to do when "all this" is over. I say beach...

Eventually the embarrassment and guilt came over me about my clutter around the house. Nearly every inch of the kitchen counter had become a dump zone. Unacceptable. So a slow, steady, all day process began and I put away the things not in use. (And did laundry and dishes...)

I am still taking it easy per the discharge instructions yesterday. I am very lucky to have great neighbors run errands for me. Thanks, Linda!  Unfortunately it will be a long time before they release me. I hope I still know how to drive when the time comes!

Kent works and will be back about 9. Sheltie Rescue folks meeting here at 10 with an 8 month old going to his new home. I will miss that since Darlene and I will be on our way to a Clinic appt at 9am. Stinks! I hear Jackson is 18 pounds which is the perfect size for "scooping up and hugging!"  I hope he enjoys his new home.

Boy, Kent and I sure do miss rescue! Just as soon as I am 100%, we will be back to it. It will probably be a year, though.  I know.. I know... There will always be dogs in need. Since I went on sabbatical, Sheltie Rescue of GA has been doing great and they will have their fundraiser at Cathy's this year. Donations welcome!  Wish I could go, I cannot be around crowds. Urg. Next year.

Ok... I said I would post my brother's schedule as a donor. It's a total of 10 or11 days, but most of the time can be at home.

October 6th, 2014 –Monday 

9:45 AM​Register at NSH Patient Access​  The Tower, Suite 1150

 10:00 AM​Welcome to BMT Paperwork           ​      The Tower, Suite 1000

​Donor Labs, IDMS, EKG, Ht and Wt

 10:30AM​Meet with Transplant Coordinator        ​           The Tower, Suite 1000​

​Kelly Yara, RN, BSN

 10:45AM​Meet with Atlanta Blood Services​       The Tower, Suite 1075

​FDA Donor Questionnaire

​Review of Stem Cell Collection Process

​GCSF Administration Teaching 

11:30AM​Chest X-Ray (walk in)​​The Tower, Suite 950

​****LUNCH ON YOUR OWN****

2:30PM​History/Physical/Sign Consents​​           The Tower, Suite 1000

​Mid-Level

3:30PM​​            ​Meet with Dr. Holland                   ​           The Tower, Suite 1000

​

October 11, 2014 – Saturday

TBD​Receive Neupogen y mail

 

October 12, 2014 – Sunday

7:00 AM ​Morning Neupogen Injectio.  ​At home/As directed

7:00 PM ​Evening Neupogen Injection. ​At home/As directed

October 13, 2014 – Monday

7:00 AM ​Morning Neupogen Injection​At home/As directed

7:00 PM ​Evening Neupogen Injection​At home/As directed

 

October 14, 2014 – Tuesday

7:00 AM ​Morning Neupogen Injection​At home/As directed

7:00 PM ​Evening Neupogen Injection​At home/As directed

 

October 15, 2014 – Wednesday                                ​

7:00 AM ​Morning Neupogen Injection​At home/As directed

7:00 PM ​Evening Neupogen Injection​At home/As directed

NOTHING TO EAT OR DRINK AFTER MIDNIGHT IN PREPARATION FOR YOUR CENTRAL LINE IN THE AM.

 

October 16, 2014 – Thursday                   YOU WILL NEED A DRIVER!

 

5:00 AM ​Morning Neupogen Injection​At home/As directed

6:00 AM​Register for catheter placement​​Northside Hospital

Main Admissions

8:00 AM​Catheter Placement​Interventional Radiology

Please be sure to come to BMT Clinic immediately following your catheter placement to begin stem cell collections

To Follow​Begin Stem Cell Collections​The Tower, Suite 1000  

 

Please note: There are circumstances when additional days of collections may be needed. We will let you know when we have collected enough cells and if you need to return for a 2ndday of stem cell collections on Friday, October 17, 2014.Please note your catheter will be removed the day following completion of collection.

Sonora itch

That's right... I said it. Sonofabitch. (Stupid spell check)

I was told this was the last spinal tap/Lumbar Puncture with chemo. Last one. Last fear of hitting a nerve or getting a headache reputed to be 10x worse than a migraine.

This one went fine, same sore muscle at the site, but no problem. Now, the hard part.... More bed rest for 24 hours.

I have developed a rapport with the transporters and the ladies working in radiology. It was a party atmosphere today. And I will miss them.

Recovery snack I ate flat on my back. Have you tried it? It's not easy.

But dinner was much better. Again... A lovely neighbor surprised me wi the dinner! Thanks, S!

I got the call today. We have a transplant schedule. Note October 1st. Another LP.

(I will post my brother's tomorrow. Basically it's Oct 6 to 16)

 This is my schedule.  

September 30, 2014 – Tuesday​YOU WILL NEED A DRIVER!

7:00AM  ​Labs, IDMs, Ht/Wt, VRE screen​​The Tower,Suite 1000

                Drink barium IN CLINIC

​            Nothing to eat or drink until CT scan completed. 

7:30AM​Bone Marrow Biopsy Prep​The Tower, Suite 1000

8:00AM      Bone Marrow Biopsy​            The Tower,Suite 1000

8:30AM      Meet with Clinical Health Psychologist​The Tower, Suite 1000

​                      Dawn Speckhart, PhD

9:00AM.     Obtain Education Notebook​The Tower,Suite 1000​Kelly Yara, RN

9:30AM​Check in for Ct Scans.     The Tower,Suite 1150

10:00AM​CT Head/Chest/ Abdomen/Pelvis​​​The Tower, Suite 1150

​​**** You may EAT AND DRINK after your CT*****

11:00AM​Pulmonary Function Test​​The Tower, Suite 950

11:30AM​Atlanta Blood Services​The Tower,Suite 1075

​Meet with Donor Recruiter

​Blood Donation Information

12:00​LUNCH​ ON YOUR OWN

1:30PM​Check in for EKG/ECHO​Northside Hospital

2:00PM​ECHO/EKG​Northside Hospital

​1st Floor Cardiology

October 01, 2014

9:00 AM​Register for Lumbar Puncture   Northside Hospital     Main Admissions

10:30 AM ​Lumbar Puncture with chemo​Northside Hospital Interventional Radiology

 

October 6th, 2014 – Monday

12:30PM​Check In for​The Tower, Suite 950

                        ​Physical and Occupational Therapy Evaluation

1:00PM​Physical and Occupational Therapy Evaluation​The Tower, Suite 950

October 7, 2014 – Tuesday     ​      A CAREGIVER MUST ATTEND!!

 8:15AM​ Arrive for TBI consult​NSH Cancer Center

3-4 hrs                      TBI Consult ​NSH Cancer Center

                                    ​ Dr. Sahar Rosebaum

​​LUNCH ON YOUR OWN

12:30PM​Medication Information​The Tower, Suite 1000

​BMT Clinical Pharmacist

1:30PM​Education Notebook​The Tower, Suite 1000

​Kelly Yara, RN Transplant Coordinator

2:00PM​Meet with Midlevel Practitioner​The Tower,Suite 1000

​History/Physical/ Consents

3:00PM​Meet with Dr. Morris​The Tower, Suite 1000

3:30PM​Meet with Research Nurse​​The Tower,Suite 1000

October 10, 2014 – Friday​​YOU WILL NEED A DRIVER!

8:00 AM​  Pre chemo labs, PT/INR, PTT​The Tower, Suite 1000

​  Official Wt & Ht

9:00 AM​Check in for Catheter Placement​​NSH Main Admissions

11:00 AM​Catheter Placement ​        Interventional Radiology

October 11, 2014 – Saturday ​YOU WILL NEED A DRIVER!

10:00 AM​Central Line Dressing Change​The Tower, Suite 1000

 

October 13, 2014 – Monday​​YOU WILL NEED A DRIVER! 

8:00 AM​TBI in AM  ​NSH Cancer Center 

~9:15 AM ​IV High Dose Chemotherapy              ​    The Tower,Suite 1000

​(VP-16 infusion)

2:00 PM​TBI in PM ​NSH Cancer Center

October 14-16, 2014 -Tuesday-Thursday     ​YOU WILL NEED A DRIVER!

8:00 AM​TBI in AM​NSH Cancer Center

9:15 AM​IV Fluids/Hydration​The Tower, Suite 1000​

2:00 PM​TBI in PM ​NSH Cancer Center

October 17, 2014 – Friday​YOU WILL NEED A DRIVER!

7:30 AM​Transplant Day!!!                ​Northside Hospital

​BMT Unit, 4th Floor

 

(You and your caregiver will go directly to the Bone Marrow Unit on the 4th floor)

 

Your hospital stay could last from a couple of days to a couple of weeks

 

Discharge will depend on several factors that include:



you can swallow medication



you are eating food and can walk around



you do not have a fever



the physician feels comfortable with your support system once you are at home



occasionally you can be discharged soon after transplant and readmitted as necessary

 

You will need a caregiver / driver for at least 3 months following transplant.



Once you have been discharged:



you will be in our office 7 days per week for up to 6-8 hours per day



you will need to provide your own lunches



there is a refrigerator and a microwave for your use



visits will decrease in length of stay and frequency as you regain your strength and require less blood product support and / or IV medication

Shortest Clinic Ever

I was done in 1+36. Didn't need a thing today. Darlene brought me to clinic and donated platelets again. (Thank you x2!) She even got Walter, her favorite tech. While I was at clinic, I overheard my nurse ordering plateletes for another patient. She got the last bag. The last bag. They ran out of plateletes. They have to get some from Red Cross, but that takes time.  Hopefully tomorrow they will have a good supply. Maybe even Darlene's will be processed and I will get those!

My numbers have dropped, meaning the chemo did its job. So tomorrow before my 8th (final?) lumbar puncture with chemo I will need plateletes. That means I have a 7am appointment, then the procedure, then recovery flat on my back for 2 hours, then home. A very long day indeed. But hey, what else do I have to do?

Kent got the mail and I found two gifts. Thank you ÜB and AA. Very cool frame worthy airplane pictures. The other is a mixed tape (CD) from the Byrds. I can't remember the last time I got a mixed tape. Reminds me of high school. Love it! Thank you!

Today I got to catch up with Linda. I remember many a morning sitting in PJs at her house drinking coffee. No PJs and no coffee, but a good visit anyway.

Then we had Charlie and Bev over for dinner. They brought home cookin' ... Nothing beats it!

All in all a pretty big day. Hopefully tomorrow will be uneventful!

Better Still

We were expecting this: cumulative effects of chemotherapy. It makes me even happier that was the last of the "Hyper CVAD" program since we are doing transplant instead.  There will be some more  chemo+radiation will be in preparation for the transplant, but I don't have details of that yet.

Don't get me wrong, this was not a terrible experience. I got sick once and had a nearly dry heave once. Then I was just tired. I have had worse hangovers on January 1st. Heck, we all have thanks to the Sims!

Today is much better. I woke up bout a 6 (out of 10) and got up and showered and made it to the couch. I puttered a little around the kitchen, but still didn't accomplish much.  My big goal was to drink water. I missed my "3 by 3:00", but am on track for 2 liters of water for the day (at least). Dude, it's a full time job.

Lunch was provided by the Gills. Yum. Totally hit the spot! Thanks!

And then I found my gifts from Aunt Pat and Aunt Mary Jane. (Thank you!) If you don't know Malley's Chocolates, you are missing out.  Billy Bobs are awesome! I have to dole out 2 a day. My other favorite are snow caps. Those I allow myself 4 a day because they are smaller.  Ok.... Maybe 6. Or 8. Yum! 

Thank you, again, Hamiltons for dinner. That makes two nights in a row.  We are lucky to have you looking out for us. After dinner I feel like I am an 8 now. Just in time for dessert and bed. Dessert...that is a good sign my appetite is back. I missed it.

Lastly, Happy 8th Birthday to Annie. We love our Annie-BanannieBug.

Energy Conservation

Today is a lazy day in an effort to conserve energy. I haven't been sick again, but just don't feel motivated to do much.

Dexter has been watching over me all day.

I have been eating and trying to drink. I am behind on my 3 liters a day.  Maybe tomorrow I will get back on track.