Monday, April 14, 2014

A plan, and the girls

More meetings today with my doctor, and we have a plan. I am set for surgery on Thursday to have the port put in and then on Monday chemo will start (pentostatin). I will get this drug every other Monday for 3-6 months followed by a course of rituximab (not sure how often or how long yet). My doctor is still working to get ahold of the doctor at NIH to consult but based on the doctor's input Friday and our discussions today this is the plan. My doctor described doing the clinicial trials today as the preference from the medical profession's standpoint to gather more info but he said it was also like "taking a hit for the home team". Neither Chad nor I feel like we are to that stage yet.

We told the girls tonight that I would get the port on Thursday to help the doctors draw blood so they did not have to stick me with needles every time and to give me the special medicine which I would start getting on Monday. We talked about how I could loose my hair and how weird that would be. They wanted to make sure they could help me pick out a wig but tonight they were as they have been so far - which is really totally okay with it. I think they remember I was sick, got medicine and got better so that is the plan. We taught the girls to play hearts an euchre over Christmas so luckily we have a good sedate family activity we like to do together.  Hopefully I can at least feel up to this activity over the next few months.

We are watching for signs of concern from the girls but so far they've handled it all really well - perhaps too well!

A few months ago, as I was tucking Margaret in for bed she started sobbing. I asked her if something happened in school, if she was feeling okay, and finally I asked her if she was worried about me. She blurted out "what if the leukemia comes back?" I held her close and told her that was why I volunteered for the LLS and ran to raise money for research. I told her I had good doctors and there were good medicines out there and they would do everything they could to make me well. Chad has been checking with her to see if she has been worried, and she said she was awhile ago but she ahd talked with Mom and now she knew that I had good doctors and medicines and would be okay.

Katherine has seemed totally OK - her biggest issue over the past week was being frustrated and angry that she isn't getting a cell phone for 5th grade graduation.  Apparently 'all' the other girls were getting one - which later turned out to be one getting one and all the others hoping to parlay that into devices of their own...

So the girls are good. Better than Chad or I am but so far we are all hanging in there. I am feeling okay just very tired which I know will get worse. We were able to enjoy the nice weather this past weekend. We are bracing for what we desparately hope is the last blast of winter. This time around since I am out patient at least I will get to go outside which I think will (at least mentally) really help.


3 comments:

  1. Beth, thanks so much for the update. You continue to be in all of our thoughts and prayers. We are here to support you and will be here throughout your journey. Your strength, confidence and can-do attitude is inspiring despite the stressful situation. All the best in your first steps towards good health. God bless!

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  2. Beth, you are such a strong person with an amazing attitude. I know your strength you will get through this second round of treatment. We're all thinking about you and sending lots of prayers your way.

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  3. Beth - you are such an inspiration. You and the family are in my thoughts again. I was not excited to start following your blog again just because I wanted you to be well forever! If anyone can kick this again - you can. I am going to be pulling for you! Best of luck with all your treatment - hugs!

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