It has been awhile since I last posted about Carol's treatment and progress, which I regret as I have received a lot of information on this site about "everything OC". I hope to provide information and support to others that come to this site.
During Carol's treatment she spent the 4th week in the hospital (week of 3/1) due to being malnourished, dehydrated and potassium, magnesium and phosphorus levels being low. (Carol had 2 pints blood infused the week before because her red cell count was too low). At first she was doing the bolus feedings fine then it got to the point she couldn't keep anything "down", including water and meds. Her radiation treatments continued while in the hospital but they did not do her scheduled chemo treatment for that week. Coming out of the hospital she has gravity feeding bags (insurance wouldn't pay for the pump and Carol didn't want it), the correct feeding formula (her body can't take the Isosource)and they gave her proteinex.
Carol's last rad therapy was 3/25.
We met some great people there and will miss them, but we won't miss all the appointments. With all the time we spent there we could have set up camp
On 3/26 Carol went in for what she thought was her last chemo. When she saw the nurse filling out paperwork for bloodwork, Carol got really upset. Poor thing. The MO scheduled her for one more chemo to make up for the one she missed while in the hospital. While the MO told me they don't do "make ups", I felt she needed that missed chemo regardless of the hospital's policy. And I believe the RO had something to do with it.
Carol had her last chemo on 4/2. I swear if she had the energy to do cartwheels on the way out she would have.
Now it's time to wait for her followups at the end of this month. She is scheduled for a CT scan 4/24; RO, ENT, Combined Tumor Board on 4/27. I'm really hoping there won't be a need for any surgery but won't dwell on it for now. I'm concerned about the CT scan being done so soon after treatment because of the hotspots. Hopefully when she sees the MO today he'll be able to answer her concerns.
Carol's hair has thinned and some hair comes out while brushing, but still has a headful of hair (no bald spots). Her neck and face is starting to heal. She uses the Aquaphor constantly. Her chicken neck seems to be firming up, maybe because it's not swollen now. She's having problems hearing with her left ear (she's been deaf in right ear since 14 yrs old). All the Drs are aware of this and she's using one of those things that amplify sound in the meantime. Her speech gets worse as the day progresses. By the end of the day she'll quit talking, getting totally frustrated knowing she can't be understood. She is doing the mouth exercises. She is able to open her mouth a little wider and stick her tongue out a little farther. She is trying to eat orally. It's just jello right now...Her swallowing is slowly improving. The fatigue is hard on her. One minute she'll be talking, the next she's nodding off. She gets cold easily even in our 80 degree weather. (She's going to request another TSH level check). Carol's arms are starting to heal from being the pin cushion. Oh, she also had real bad thrush but has cleared. She has maintained her weight of 131 lbs - lost only 18 lbs since being diagnosed.
Sorry about this brief synopsis but like I said I haven't posted in quite a while. The Drs. are surprised and pleased at Carol's progress, now it's time for the next round...which will be here soon enough.
Linda
