I sat down to journal, several times tonight. There is so much going through my head, I had no idea where to start. Wednesday was so much better than Tuesday. There was a little familiarity with the clinic and staff. Gregory was more comfortable, too. It took a little negotiating to get him to wear his mask at all times, but he is cooperating brilliantly. Yesterday I sat down with the team and we talked broad brush strokes about his treatment plan. Once all the results are back and the team gets a chance to review everything, we will meet again and put the final rubber stamp to it. We are targeting June 2 for admit/chemo. A few highlights:
Major to Minor lung difficulties are an issue.
Major to Minor Liver difficulties are an issue.
There is a strong likelihood that he will be infertile.
He has started the first of his medications. He is on twice daily Bactrim for specific bacterial stuff and Ursodiol, twice daily, to beef up the bile in his liver, in preparation for chemo. He will received TPN post transplant, via his central line. We still need to get his central line changed from a single lumen to a double. Today we had a blood draw, Bone Marrow aspiration, Lumbar Puncture, Echo and chest x-ray. The last few days have been really hard on him. He came out of today’s sedation, really hard. They scooted us out of the room and instead of being able to go home and chill, we still had the Echo and x-ray to get done. He eventually rallied, but it was hard. Tip of the iceberg, I know.
The car situation is handled and I should have it by Sunday pm. Yay! Independence.
I have so many thoughts on this experience, so far. They are going to have to wait, a bit. I’m looking forward to having some time with just Gregory and I. He and I have been attached at the hip, ever since February 23rd and we have developed a great symbiosis. It’s selfish, I know. I can’t rationalize it. It just works for he and I.
I fall in love with this town, everytime. The biggest impression, so far, is the beauty of it’s diversity. I love it. I have to admit the lack of diversity is one of the biggest downfalls of Spokane. Some people may believe that it is more diverse, than it used to be. It is segmented. It’s not diverse. I love the fact that anything goes, here. Pretty much without question. Which again brings me to think other people’s experiences. I embrace the “different” and diverse. I cannot imagine coming from a small town and experience this. Fresh. New. Not ever having been exposed to it. It has to be so overwhelming. Which is why I don’t think I will find many families that are ready to dive into long conversations. Everyone is trying to process every step of their own Odyssey. From diagnosis to displacement to treatment to recovery.
In the big picture, our treatment is pretty short. It’s the recovery that is huge. Gregory was started on the immunosuppressived diet. Some of the major items of concern: All fresh fruit/vegies must be hand washed. All items that are not cooked, must be shelf stable. No deli type/refidgerator case items. No buffets. Meat MUST be cooked to well done. Basically we are avoiding ANY kind of bacteria/mold/fungus that could be hanging out in his food. All of it. He will not have the ability to fight off the stuff that you and I don’t even realize our body takes care of for us. Which means, in order for me to feel comfortable with what he is putting in his body, he will only have food prepared by me. He can only have municipal water. Bottled water is OK, if it came from a municipal water source. All milk products must be pasturized. Same with eggs. No more farm fresh eggs. If he wants lettuce, I need to wash each leaf. Deli lunch meats and hot dogs MUST be cooked to steaming, before consumption. It’s a good thing I used to work food service. There can be no cross contamination. His meals must be prepared in the utmost of cleanliness. Can I remember how to properly pack a fridge? You bet. You won’t find fruit/veggies/cheese in my fridge drawers, anymore. That will be reserved for eggs and raw meats.
I have a caregiver class, meeting with pharmacist and the research RN, tomorrow. Quick day, actually. We are scheduled to be done by 11:30. Unless, of course, we get something else. We did get the OK for him to visit the Zoo, prior to admit. I’m hoping to do that next week. I’m really looking forward to it.
Well. My writting well is about dry, for now. I’ll get into it more, at a later time. ’til then, love to you all. Thank you for all of your messages. There are several of you I haven’t gotten back with, yet. Saturday is the day I’m planning on catching up on my “two way” conversation. We won’t be going anywhere and I’lll have the time and energy.