I guess there is an awful lot to talk about since the last few posts. I know I mentioned our concerns about the cost of the new medication. I did find out that the prices quoted were all over the place. Even though I am on the medication I am not sure how much it actually costs – will have to wait for my next insurance statement – but the price seems to be around $9.000.00 per month – much less than the 14 -16 thousand I had been quoted – but still substantial. With a co-pay of between 5 to 20 per cent, this is significant. The good news was that the business office has found funds to cover my co-pay through resources they have for the next year. I will have to reapply after that. To say that this is a relief is an understatement.
And so . . . I have been on the new chemo just over two weeks. I take two pills a day. I feel fatigued, nauseated a good part of the time and have some visual disturbances – early a.m. if I move from a dim place to one with bright lights there are prismatic halos around shiny objects and trailing light streams – which do not last very long and aren’t really disturbing. This is what is necessitating the visit to the ophthalmologist per my oncologist – although the research seems to indicate that this has been thoroughly checked, it may decrease and it usually signifies no damage. This may improve with time. I did see my optometrist today who read the research I found and who could find nothing wrong with my eyes except for a slight adjustment in the prescription and he mentioned once again monitoring the beginning of cataracts. I have the opthomologist’s number and instructions to call either of them if this gets worse but indeed, the phenomena seems to be lessening and as promised is not at all bothersome and short -lived.
Food is the real problem. I never know what I will feel like eating and continue to make a huge effort that all of my calories “count.” This is not unlike the continual morning sickness I had when I was expecting Elizabeth. Sweets don’t taste particularly good -perhaps because I have been avoiding sugar anyway – but coffee tastes muddy, lots of things taste “off” and I have completely lost my taste for vegetables. I only “lost my breakfast” twice the first week and so have that under control but I never feel really good or have an appetite. What a strange place for me to be in. This may improve with time. Today I went to a lovely restaurant with my sister and brother-in-law, Ate half of my dinner and a forkful of dessert and I was finished, To be honest, the dessert did not even taste good. Sigh.
I will have to have an EKG monthly to watch for heart damage and blood tests monthly to check for liver damage. On a really positive note I had my first check up and all test results were good and I am doing well enough that I went straight to monthly check-ins! Also on a positive note – this whole journey with cancer treatment started three years ago when I went to the gynecologist and an hysterectomy was recommended. Breast cancer and now lung cancer took precedence over those concerns but I just had an appointment which verified that any gynecological issues are on hold – and actually I am not showing any reason for concern – so my next appointment with him will be in around a year.
Well, I am probably telling you all much more than I planned. However, if I seem distracted or distant please understand that this really is an onslaught to one’s body. My hope is that all will improve once I get more exercise and get used to the medication. My cousin’s daughter gathered the family together for a funded walk on Saturday, my daughter took us to Cirque du Soleil, my grandson spent the day with me and his dad joined us for dinner, we went out to a fabulous restaurants with my sister and brother-in-law and I am making plans to start walking with someone on a regular basis. All of these activities help enormously in getting me “out of myself.” I am always grateful to get up and start the day but I am looking forward to the day that I start to “overlook” the diagnosis It is not running my life – but I look forward to it being in the “background.” I so appreciate your care and concern – thank you from the bottom of my heart. I also believe I have learned a lesson I needed to discover. I have never been ill in my life until this happened. How differently I feel about other people and their problems. It is so easy to be judgmental and uncaring – not understanding what a struggle it can be to just eat a meal and maintain a “normal” day. If you would like to do something for me, please pass on this concern and understanding for someone – a person or even an animal- near you. We all need kindness.