It is officially the next day, that is, the one year marker of the last chemo treatment was now yesterday. It is past midnight now and I thought before I go to bed, I ought to say a bit more.
I am looking at a lovely bouquet of purplish flowers that were delivered early this evening. The card said:
"You said you'd do it, and I'd see how strong you are. Well one year ago today you finished the hardest parts. We're so proud and happy. Love, Ed, Hannah and Chloe"
Indeed this was a kind surprise that warmed my heart. And about an hour after the flowers arrived, Ed came over and we drove out into the countryside, where is was quiet and the hills were rolling with freshly planted corn and squashes and grasses. We walked past tractors and greenhouses...an old cemetery invited us to walk peacefully through it and read the gravestones...minds wandering to the 1860's and who was living in the region at the time...and Trooper and Ed and I enjoyed a warm, pleasant and peaceful walk together.
I am grateful for a lot right now and wanted to state that before going to sleep.
But, before I actually headed to the bedroom, I logged onto the site where I could access my medical reports. I believed both the CA 125 lab and the CT scan with contrast results would be available and I was correct. To begin with, I have not seen the gyn-oncologist for several months and it was due to the co-pay and my finances. At this point, I am anxious to get in and discuss my case with her. This scan, like the previous one, discusses a non-growing, fairly small lesion on the liver. Dr. Cunningham did not have the ability to know of this as I did not go in and I don't think the report was faxed over. That is the not great aspect of getting some care in one place and some in another. I will say that I have had to be in charge of asking for scans and labs because I have not seen with Dr. Cunningham or Dr. Puc, who oversaw my chemo and vitamin c. The problem with the bill and the fact it is in collections is just another stressor. The total due is not possible and despite lengthy conversation with Hematology Oncology billing person/advocate and her telling me to do nothing until I heard back, it turned into another problem I am in the process of trying to eliminate.
Getting back to the findings, I have now read many things on the internet. All of them suggest that a person in remission who experiences steady rises of CA 125 is likely 3-6 months from discovering clinical evidence it is back. I suspect I will have to have a pet scan next and that is money I do not have. If I sell the house and have money, I will not be here where I have the better treatment options and great specialist Dr. Cunningham. It is at this point I feel so frustrated, again, as I have been lately. I do not know what my chances are without support and money is support. Sigh. I do not know what to think about what is happening.
I will create a chart here that I already created on a piece of newspaper.
CA 125 numbers and dates labs were drawn:
5.5 8/16/2013
3.5 9/17/2013
6.0 11/18/2013
8.8 2/4/2014
16.1 4/3/2014
19.1 5/19/2014
The upper range of normal is 30.
I will go to bed now and try to be at peace. There has been a lot of strife in the past few months about what is going to happen with my relationship. I have felt more than ever before that I do not want to live alone. When I feel like I am supported, whether or not I am exaggerating what is real, I feel so secure. That security...well, when I go to the doctor alone and see all other patients with significant others, it is always something that brings immediate tears. I long to be important and loved enough...but it may not come to be. And the finances are just awful. I have endured too much nonsense with the toxins and conditions at work, but have gone because I have not had any other option. Moving in winter...doing repairs to home to list it...these were not real possibilities. I am currently working at the house repairs and readying to sell. I do not know how the trend will effect things. I cannot stay and afford the bills, especially given taxes are again gonna come due and too soon. NY sucks in terms of such things...but why focus on that?
I feel confused and sad. I know there will be treatment options and going through more chemo just seems like a sad option. My diet is very clean, but I think I can do better. I take the Herbal Aloe Force now, turmeric and flax oil...maybe that is why the lesion is unchanged per ct scan. I hate the PET scan...getting radioactive injections is not on my list of fun stuff. And without ability to make the co-pay...well...I just see that which already has me so sad is about to get worse.
I have done many cool and not-so-common things in my life and am grateful for that. I want to go to Italy and think I should do that this year. I wish some of the external factors at play were not, but they are. And I do not expect my needs will be met, although I want that deeply.
Sigh. I share this blog this evening with my heart on my sleeve. I need to brave up more...if possible.
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