Another
treatment began for Terry Thursday (13th). I'd like to say it went smoothly and as expected, but really ..., well, it was a rather frustrating week.
We understood that it was important that Terry begin taking Revlimid (pill form) the day he began the Rituxan (IV). We planned to make it happen, but our plan could only take place if their end of the plan was put into place.
Revlimid is a mail order only medication and we hadn't received it by Monday, so Terry called to find out about it. They told us that the order was at Walgreens and we should pick it up. Great - we were in town and went to get it, only to learn that they had no such order, nor could they receive it. It's a specialty pharmacy order only. So, he called back to the doctors office.
After four days of calling, waiting, calling, waiting ..., and still no drug nor sign of it coming, we suggested that we wait for the treatment until we had the Revlimid. They told us we should go to the treatment anyway.
So we went to treatment Thursday and talked again to the case manager about the Revlimid and she said that the company sending the pill to us would call us that very day. She made sure to ask 3 or 4 times if Terry had his cell on him and if we'd make sure that one of us would answer it, and that it would be sent overnight to us. Well, we had been hearing that for 4 days now, but tried to not give up hope.
The Rituxan infusion went well. No phone call though. And, no lab reports - they didn't do a blood draw, even though we asked them about it. I am going to be honest here and say that we are feeling a bit frustrated and concerned at the moment. We've wondered a couple times, "who's looking out for Terry and are they
really looking out for him?"
We had to go into the clinic Friday too (for appointments for me, Elaine, this time) and decided to go talk to the case worker again, since we hadn't heard from the pharmacy. She called her contact and then Terry spoke directly to them. After several minutes on the phone, he finally found out that the pill will get to us on Tuesday. (Sounds to us like we should have waited a week for the chemo.)
The pharmacy gave Terry some instructions and told him that he should have weekly blood draws - so why didn't we get one Thursday (even after asking about it) and why isn't one set up for next week? I promise to make sure that he gets a blood draw before chemo starts next week, and to check it before he continues his treatment!!! We want to be Christlike in our dealings and are worried about being too rude to our caregivers, but I'm feeling pretty offended myself and finding it rather tricky right now. To me, these are important decisions and they shouldn't be let go as we feel they have been. We want to see more "care"ing.
This weekend has been a bit tricky for Terry - I'm not helping him like I usually do. The tables turned and he's been helping me. I needed a driver to and from my appointments Friday, and being the good husband that he is, he took that responsibility and then had to sit in the clinic for several hours waiting for me. Not so fun when your body aches from chemo the previous day.
After two days of prep and testing I'm looking forward to a better day today, and hope to let him find some much needed rest. Oh how I hope that happens. The good news is that the doctor gave me a good report - no colon cancer, all is well.
Now, on to better days ..., for all of us hopefully!
Disclaimer - this report may seem a bit negative ..., it kinda does to me, but I have written it over and over again this morning and that is just the way it's coming out ..., and in fact it is better now than the first time I began. :) (If I come to my senses a few hours or days after I post this, I might have to delete it, but for now, it's going up.)
I'm just giving my (shortened) opinion of the events of the week and probably influenced a bit by how my physical body is feeling, and mental capacity after the last couple days. I'm kinda tired myself, having been up and feeling crummy all but two hours of Thursday night. I had a good night last night though, and look forward to accomplishing a lot today. I HOPE!
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