Day -7 and Day -6

This has been a busy 2 days- even though it will not sound like much to you all as you read on here. Anyway, we started the first of the 2 chemo regiments gearing up for the transplant. This first chemo is called Busulfan and according to the literature I was given it “is very strong”. In fact, it goes on to explain how the drug works “Busulfan harms cancer cells causing their death” (I am not making this up) so one would expect that I should feel like crap. Well, I am happy to say that has not been the case. I have had bouts of extreme fatigue, it just kind of comes on me. One minute I am sitting up reading something and the next I need to close my eyes and lay down (funny isn't it?). Even with the fatigue and, trying to keep in mind it is still early in this regiment, I can say things are going better than expected. I will continue to get the Busulfan for the next 2 days- for a total of 4 doses. Just to clarify a single does is a 2 hour IV drip repeated every 6 hours and we get to repeat that for a total of 4 doses over 4 days. As I write this I have just finished bag number 7 (almost half way). So things are going well and I am pretty much settled in (Karen brought in Diet Pepsi, and that helps). I had hoped to have a routine by now but there are just so many variables that I just can't be sure what is happening when, I am sure we will figure it all out in time.

After this I move on to chemo number 2 but I will leave that for another post.  

Self Portrait (2/7/12)

Some people been asking so here's a new self portrait on my first day at the mayo clinic hospital.

Here we go!

It is finally admit day. I am officially checked into the Mayo hospital. My day started with more insurance dram as we learned yesterday afternoon that they had deemed this treatment experimental (sound familiar?). I was scheduled to check in for my port placement surgery at 5:30AM, but with the insurance news, we had to postpone and wait for the insurance people to get in the office, so that Dr. S can talk with them and try and set things straight. The insurance issues ended up not being too much of a hassle (for now) but it really did add to our stress level at a time when we could do with less. I ended up with the surgery happening at 9am and was in my room by 11:30 so it was not that much of a delay. The port went in without any issues so there is not much to say about that, I am a bit achy but that is to be expected with any surgery. All the activity gets into full motion tomorrow with my first round of chemo, so for now I am just getting comfy in my new home and with my new port. I can add in that the room is pretty good; lots of space and a distant view of the McDowell mountains. I will save the details regarding the chemo for tomorrow's post as I will then be into it and hopefully have a better understanding of what's happening before I write about it.

I also wanted to take a second to add another THANK YOU to everyone- your well wishes, meals, and emails have been great.   

Opportunities to Help (if you live in AZ)

I know some of you got this email, but I wanted to post it on the blog. So many of you have asked how you can help over the past few months and Karen's email (below) explains some opportunities. THANKS everyone!

Hey everyone:

A quick update -   Tony will be going into the hospital on February 7th.  We are estimating that he will be in until the 1^st weekend of March.  His transplant is scheduled for February 15^th and the docs look for his white cell count to rebound about 12 – 16 days after transplant.  They’ll wait a few days after the white cells come back and then should release him.  Again, once out, Tony will need to go back daily for the first few weeks, then every other day, then every couple of days for the next 2-3 months.

So, needless to say, we are going to need a bit of help from those of you in AZ. Visits to the hospital:  Because he will be in for over 3 weeks, Tony will be antsy and visits from people other than me will help entertain him and keep him energized. Also, it will help alleviate some pressure on me to be there every day.  Visits to our house:  Any time, night or day will work for us!  Again, Tony will want a diverse group of visitors so he is not just talking to me all the time.   

Tony and I could also use a little stress relief in the form of meals.  It helps so much not to have to plan a meal, buy all the ingredients, and then cook it.  (This is really something you will be doing for me, as Tony will not be cooking for a while.) Several of our friends have already been doing this in the form of home cooked meals, Costco meals, homemade muffins and home-brewed beer & cider!  WHEW- is it helping!!!!!  Tony and I are not looking for our cupboards to be stocked and our fridge to be filled, just a little help.    You can sign up on a calendar I have created. The link and more info is below.

Notes about visiting: No visitors under 12.  //  We would love it if Tony would get 2 visits from friends a week.  //  If you have an inkling of any illness, PLEASE, cancel your visit!  //  Mayo Hospital, 5777 East Mayo Boulevard, Phoenix, AZ 85054, 480-515-6296

I have created a calendar to help coordinate all of this.  Here is the link and login info: 

HELPER LOGON:  The HELPER logon is used by family and friends that would like to sign-up to help a loved one.  To access Tony Childers's personal CareCalendar site, visit http://www.carecalendar.org/logon/101445

and enter the following information in the appropriate spaces:

                                CALENDAR ID      :   101445

                                SECURITY CODE :   7159

Please contact me at aspentreehouse@gmail.com if you have questions about the calendar or need any help.  When you know what day would work for a visit, let me know and I will change the calendar.  This is all new to me, so I hope everyone is patient and understanding as I get this going!  :)

For all of our loved ones outside of AZ-  Just keep sending us your healing thoughts and prayers.  Tony really appreciates all the cards and emails, so keep them coming.

This is it, guys.  It begins next Tuesday!  Wish us luck, send us your love and help as your geography and time allow!!!  Love you all – Thank you so much for everything seen and unseen!

Testing Days

It has been a wild two days. I can’t tell you how many doctors and tests I have had done, but things are looking good. I have learned these test are more of a “base line” then a pass/fail kind of thing. They will use this info to determine how things are going as we go through the transplant. This is not to say the doc’s are not looking closely for any “signs” to say this is not the right time to start. The most interesting news is that we finally a true hospital admin date, Feb 7^th. I really will not have treatment on that first day. I will be getting my new 3 loom catheter put into my chest (to help with all he meds and blood draws) . This guy is really going to be my friend as I can expect to keep him for about 4 months.  Right now I am recovering from another bone marrow extract and collecting all my urine for 24 hours (not sure what they are testing with all that), so it is going to be a slow weekend. I will return to Mayo on Wednesday for more tests. It seems like we have been at this for some time now, but I can finally say that I see the STARTING line, and we are revved up to go. Let’s just hope the finish line goes quick. 

The Next Step…

Today’s appointment with Doc H. showed that the 2 rounds of ICE Chemo treatment did the job and it is time to move into the transplant process.   Now things start to move fast.  I will be spending all day Thursday meeting with doctors over at Mayo to get their OK to proceeded.  I need to get the approval from each department/doctor to confirm that I am ready and capable to have the transplant.  Here is a short list of some of the departments I have to get clearance from, to give you an idea of who is OK-ing things (Radiology , Vascular Surgery, Bone Marrow, Cardiology, Pulmonary Testing,  Cardiology Echocardiogram, Hematology Oncology, AIC Unit, Otorhinolaryngology, Infectious Disease).  Then, on Friday, I meet a battery of counselors and social workers, to make sure we are prepared for the next few months.  Finally, we with meet with Doc S to finalize the plan for the next 100+ days.  Right now, we have a tentative date of Feb 8^th for admission to Mayo hospital for the transplant.  Once admitted, we will begin a new chemo attack to “wipe out” my immune system in preparation for the transplant.  The exact date of the transplant has not yet been set but it will follow this chemo treatment. Once the transplant happens, I should expect another 5 to 6 weeks in the hospital to keep things under control- dealing with germs & stuff and giving my body time to grow a new immune system (and a new blood type).  So, it’s time for the next step.  It is all a bit exciting (and scary) to know this is all gonna really happen AND SOON! 

Energy Levels

Still, at home and all is going well. I was able to go in to work today for a few hours and that felt good. My energy level is still depleting. The best way to describe how this “energy” thing is working for me is to use the analogy of a battery. I start out the day feeling pretty good and everything is in working order, but as I do more and the day moves on, I use up the power. If I take things slow and conserve my power I can get a longer lasting day. Like before, nothing particular is wrong I just feel “wrong”. So my biggest daily decision is to decide how and when I use the energy I have. This is tough for me, the past many years I have been working so hard to train my body to handle harder and longer adventures. It takes a lot more effort than you would expect to change the mentality of just “push through the pain”. I am sure I will learn to adjust better and I try to remember this is just temporary. For now, I just need to watch my power levels more often and remember to plug in every now and again (naps) to keep my battery changed.

Lastly, I get a PET Scan Friday and see Dr. H. Monday for the results. Will update the blog once we have news.