Morning of Jan 6th. Feeling good … those two units of blood were a good thing. I get platelets today (and need them.) Plan to get a real shower around 11AM kish when my chemo is switched out. I gather from my doctor I will feel best this week so it is still mostly good for visitors and maybe even a little next week… later next week may get more dicey when my white counts are low and I may get fevers ..but we will see. Of course every day is different. If you feel like coming. give me a call, and I will let you know if it is good day (I am feeling good and not too many visitors.) While everything is going fine, we won’t really know if the chemo worked for about 5 -6 weeks. I’m going to hopefully assume it is until then. I might as well enjoy each day.
I love the caring and funny emails and the blog comments I am getting. How did people go to the hospital without wifi?
I’m still trying to be wild …. Irene
For you medical types the other chemo drug I am getting Cytarabine … that’s the one I am getting for 24/7 (7 days.) I am done with the Idarubicin …. hopefully my heart survived well. As expected my counts have been dropping so I got two units of blood today and will probably get platelets tomorrow. I wasn’t so lively today .. I guess the low blood counts and perhaps the chemo is wearing me down a bit. I am still eating but with a bit less enthusiasm. They are doing an awesome job of avoiding nausea.
Did enjoy some visits today. I am trying to spread them out a bit so I don’t get too worn out. I love having the laptop and getting replies to the blogs and emails.. it helps me feed connected and loved. Ed has been feeling a bit over welmed with all the wonderful offers of support and help. I just reminded him that they are all examples of God’s love … and to just enjoy it, even if he doesn’t need help right now.
Mom is doing so so .. sometimes she is pretty up and other times she just cries. Physical therapy isn’t going well. LeRoy will have a meeting with them this week (which I hope to teleconference in on.) I think we need to get the gereactric physichologist back in for a consult on her meds. She might just be shutting down though. We will just try to get her the best care but realize it is in the hands of God. They haven’t told her my news yet … hopefully tomorrow. Mainly just that I have leukemia and am being treated for it right now so she knows why I am not visiting. No odds, no other treatments .. just I am being taken care of. I think she knows something is up anyway and should know the essence of the truth … with a minimum of scary details.
Cousin Ann suggested I liven up the blog with a little fiction or Dr. Kildere type romance …but I am not quite up to it yet … but I will keep that in mind … if there are any funny stories you will get them. If I get bored I will make them up. Ed says he has been slowly taking down Christmas decorations (I think Jan has been helping too.) He says I will have a heck of a time finding them all next year. I like that attitude … that will be a good problem to have.
Right now I’m know as the “wild patient” here because I am up and about quite a bit. I hope to keep that reputation for a while longer. That’s all for today … from the “sort of wild” patient.
Jan 4 – Sunday. Second day of chemo .. already had two of the three doses of Idarubacin (sp), the heart scary drug. So far am feeling pretty good except for a bit of tiredness and lingering headache … my counts have already started dropping which is to be expected if the chemo is working so I hope that is good. I realize I will feel worse as the process goes along so I am trying to enjoy my relatively good days. The nursing staff her at Seton is absolutely wonderful so that helps.
Today actually had shower/sponge bath combo and a back in my own clothes. I am pacing the halls for exercise and so far am eating well They are taking good care of me. My first IV stand had a dicey wheel (you know, when you get “that cart” in the grocery store) but they gave me a new speedy blue model. Friends have already stopped by; and I received wonderful phone calls, blog comments and emails so I am feeling really well cared for. Friend Vicki, stopped by and visited Mom for a hour this morning and said Mom was doing well. They read cards and had a good time. I am happy to hear she is well cared for. Ed plans to get together with LeRoy and Pastor Bill and talk to Mom one morning this week (Tuesday or Wednesday). They will tell her I am in the hospital with leukemia and am being treated for it right now. We won’t tell her any statistics, just that the doctors are giving me chemo and I am well cared for. I can still talk to her by phone.
Ed visits during the day and goes home to Zena at night. Our neighbor Edi had Zena over with her dog Zoey for a play date yesterday. So far Zena wants to play but Zoey is less interested. We still have hopes and Zena loved being with them. Ed says Zena isn’t buying the crate at night for the moment so he is letting her sleep wherever she wants.
Hello all .. hospital in Austin, day two. Boy a lot of changes in very little time. We are both in shock still. Yesterday had a MUGA (heart scan), wasn’t as good as we hoped (it was 45% instead of greater that 50% ejection fraction) … still we hope it is good enough to take the new chemo med. Also has a baseline bone marrow biopsy and got the port installed (sort of a permanent IV). Sore chest and upper butt. This morning they started chemo … I get one drug for each of three days (?Idarubicin) and the rest of the time a second drug, continuous for a week. It is the standard treatment for acute Leukemia called 7 and 3. So far with all the pre-meds am feeling OK … but we will see how it goes … taking it one day at a time and hoping those cancer cells are dying. Ed visits during the day, and goes home to Zena (our little dog) a at night. The current best guess is that will be hospitalized a month. The scary part is after the chemo is over and my counts are down to zero and there is risk of infections. However I am blessed and overwhelmed by the love and support I have received. Thank you!
This isn’t a cure, but if we can get a good remission with the heart and kidneys intact, we hope to be able to get a Bone Marrow transplant in Houston at MD Anderson later … and if that worked that would be a cure.