¡¡¡ Side effects and More !!!

For a couple of days now i have been through some pretty significant physical side effects. I guess with a week to go on the chemo and rad the monsters 1 and 2 needs are reaching some sort of critical mass in me probably in preparation for 28 days of no monster meds.

I seem to be getting mixed messages from the physicians i am working with . Differing information from both previous communications and from each other. It works like this: early on in the process i was told that all little boo-boos i get will be slow to heal and prone to minor infections, so i need to be conscientious about taking care of cuts and scrapes. Today when i mention it they both go "Never heard of that...".  Obviously they are willing to help and discuss any issues i bring up, but the different information is a bit disconcerting. I remember being told....just not by whom.

The worst yet was yesterday morning when in a sound sleep shooting pains started in both knees and woke me up. It was in incredible feeling that made me whimper. This morning, again, although i dosed myself with Aleve before bed is is more manageable, pain through both knees.  One of the physicians has (this time i know which one) told me that the steroids can cause joint pane, and that until i uncomfortable we will keep steroid use as it is. I see this particular physician today and will certainly bring it up. Although yesterday's other onco visit he told this wouldn't be from steroid use..... There seems to be a gap in information from physician to physician.

I got a text yester from BigB asking what we were up to and inviting me and B out with him and P, (sorry for all the initials!) for a chillaxin. What a great time, to be away with non-illness related business to tend to, swapping stories and just laughing and enjoying each others company. I didn't even realize how much i needed it until after it was over and B and i were driving home and it hit me that i (we?) are so wrapped up in this issue that life itself passes by, even when i feel great, and we forget to enjoy just time spent. Thanks again BigB, you and P did a lot more than just get me up and out (and pay).

This weekend we are going to Mio to go tubing. It used to be a yearly event but fell off somewhere, this year it is back with a vengeance. Saturday is forecasted to be 81 sunny and 10% chance of rain. That sounds perfect. We have an 8ft  party island that seats 4 adults or however many kids you can stack up, i think about 8 tubes, and someone is bringing a canoe, (can't wait to see that :-)  )  Got new fishing poles for me and the boys that are finally gonna get wet, even if we have to stay later on Sunday, this time the boys and I are gonna feed the fish by the dam. Sissy and D are both going! I don't think either one has ever been...(a lot of cloudy memories of tubing at Mio). This is gonna be a good one.

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Last week the issue of time came up. I guess it is inevitable to ponder is this thing really going to kill me in 2 years maximum? (According to SSI). Who knows, we cant check progres until my current protocol is on the 28 day break. But does that mean that we just sit here and wait? Of course not, but what do you do? How do you prepare to die, especially if you have no idea when it will happen? Try as often as you can to ensure the littlest ones know you love them and set a good example. Is there more? Please post.

For the non-children in the group? I will do what i feel is best, as well as show respect to your concerns, but i have a pretty narrow focus, for right or wrong, so how i allow myself to be myself is narrow as well . Please understand that since you are the adults i feel you should allow some consideration? and not take my steroid induced mood swings and my seeming inability to track details personally, unless you like being the victim, although there is something noble about being a martyr.

Back to planning or preparation....Remember the books that Little S gave me for the kids? One of the hardest things i have ever had to do was open the cover and put pen to page. I have started but WOW. Once i get going there's no stopping me (look at the size of this post already). I guess that that process is cathartic, figure out the hardest part first, then allow the rest to come through. They're not supposed to be sad, more conversational and stream of consciousness than anything else. Thanks again Little S.

I have more and more but i will save it for the next post. I believe that this should be a 2-parter and will finish if off soon.

Thanks Everybody!!!

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