I met with Dr. Powers, the medical oncologist today to get the results of the PET scan. The GREAT news is the PET scan was fine – “no hypermetabolic activity” – in other words, so signs of cancer anywhere in my body!! Praise the Lord for that!!!! I gotta tell you….I was scared today…..as hard as I tried not to be, I was scared. But once again, sooooo many prayers were answered, and I cannot thank you enough!! So tomorrow, when I go into the hospital to have Dr. Mammen clean up the margins of that last biopsy area, he will not have to do extensive surgery. It should end up being done on an outpatient basis, letting me go home later in the day. I have to be at the hospital at 7:45 in the morning for that surgery.
However, the not-so-good-news is as I anticipated it would be. Dr. Powers DOES recommend chemotherapy. Since there seems to be no rhyme or reason for this to have occurred, and because that 3rd one showed up so quickly after removing the 1st two, he feels like I should take the chemo as a precautionary measure. AND they can’t keep cutting on my head! Out of all the sarcomas, Dr. Powers said that angiosarcomas are sensitive to one of the chemo drugs that is often used for other cancers – not a new drug, but a tried and true one. For my nurse friends, the drug is paclitaxel.
Dr. Powers wants to wait to start the chemo until I’m healed from all the surgeries. My post op check back from tomorrow’s surgery is Dec. 15, so that is when I’ll also meet back with Dr. Powers. At that time, he’ll talk more about the plan. The general plan, as he outlined it, will be to take a rather low dose, by IV over a 90-minute period, once a week for three weeks. Then I’ll take a week off. Then I’ll repeat that – once a week for 3 weeks and off a week. That pattern will continue for 4 to 6 months. Yikes, that seems like a long time! We talked about possible side effects. Two he mentioned is fatigue and changes in nails – may turn them dark. I may or may not lose my hair. But then he said, “If Dr. Mammen keeps cutting on your head, you aren’t going to have any hair anyway!” :) That is true, since half of it is gone now anyway. He said if I did lose it, it might come in curly! :) (I guess that was supposed to be a benefit) I shouldn’t worry about my hair – the topography of my head has changed forever. After the doctor left the room, the nurse said another common side effect is neuropathy – tingling and numbing of my fingers, and possibly feet. OH, I hope I don’t get that!! She said if I noticed that too much to notify them, and they might cut the dosage back. I’m immediately thinking……. piano playing…..quilting……just buttoning my shirts. I already have trouble with my feet being very tender on the bottom. My mom had neuropathy of her feet – no particular cause for her, but she said it felt like she was walking on two wooden blocks. I was always afraid that I might inherit that from her!
Well, I know that I should not run down all those rabbit trails, but I had to ask about the side effects. Some are temporary, but some can be permanent. I had really hoped that I would not have to have chemo, but I don’t want my head cut on anymore, either!! I’m just praying for minimal side effects……..God has been so good to me so far!
Another good thing is that there are many Kansas Cancer Treatment Centers all across Kansas, and there are several of them close to Little River – McPherson (20 minutes), Hutchinson (30 minutes), Salina, Wichita (60 minutes). Dr. Powers said I could get my chemo treatments at one of those and not have to travel to KC each time. He and Dr. Mammen will still be guiding my therapy and care, but he will be contacting one of those centers to set it up. I told the nurse that “expertise in administration” is more important to me than “closeness” to me. She said, “Oh, yes, he will never send you to a place he is not completely comfortable with!!” So we may get home before Christmas after all. I will be coming back to KC to see Mammen and Powers every 3-4 months for CT scans. Dr. Powers indicated I’d come back sooner than that to start with. I’ll need to be followed closely with blood work to be sure I don’t get anemic since chemo effects the bone marrow and its production.
So as you can see, this is all going to go on for a while. I have to remember to take one step at a time. I’m going to try to concentrate for now on the good PET scan news and getting through tomorrow’s surgery.
As always, I thank all of you for your prayers and support. I surely do feel it!!
As always, I’m in his hands…..