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.
Thursday, May 22, 2014
May 22...
I am not one to dwell on anniversary dates, well I honor myself on my birthday, but at this time there is not another significant date to dwell on. I am contemplating the importance of honoring this date as a milestone. It was the date I endured the last potent infusion-treatment... which had already worked to rid my body of the invasive disease called cancer.
One year ago, I rejoiced as I came home from my last treatment...well, as I recall, and I had to look back to verify, it was a tricky thing because I had driven myself to treatment but realized in the chair that I really could not drive myself home. I called a friend who I had not asked for help during my chemo and she had to squeeze me into a bunch of already arranged do-for-others errands. I recall it was hot out and I sat in the back of the car. We had to pick someone else up and when I made it home and got dropped off....then I was relieved. I had endured not only the treatment, but the humbling aspect of having to inconvenience others to get through the ordeal. I accepted most offers for help and hated like hell to ask for anything not offered from anyone. I think that is just part of who I am because I still have those same difficulties. I was eager to be on with it...living fully and accomplishing more than maintenance through the difficult.
The current struggles have to do with lack of finances and what one goes through in order to survive in search of thrive. I can see clearly that choices I felt were what I needed to do were overall harmful to my being. The job I accepted has been toxic...in the truest sense of the word. I was with sinus issues immediately but thought perhaps they were due to the cold lobby and adjacent block wall I was stationed next to and the exposure to so many people with my somewhat weakened immune system. It turns out there was black mold growing profusely beneath the wallpaper and the worst of it was right where I was stationed. After that nightmare was unearthed and abated, painting commenced and the fumes effected me gravely. Coming forward about it has netted me a shunning treatment that recently led to everyone who was per diem and untrained going to a two week training that I was not told about nor able to take advantage of. Nothing like feeling like your earnest and professional efforts to serve the not-that-great State of NY are more than unappreciated. To know one is on one's way out is a force to reckon with. Maintaining self-worth and knowing in my heart and soul that I have done an outstanding job without training and interfacing with hundreds of folks a day, respectfully and courteously...and knowing how many of them have walked over and thanked me for being real and concerned is yet another challenge. For the truth shines in the background while in the foreground is the knowledge I am not wanted nonetheless. And I still struggle to learn the types of mold I was exposed to as I await my long-awaited appointment to be seen by occupational health professionals. I still have sinus issues and my respiratory system, per recent tests, shows signs of having been harmed. Damn it all. I never ever would have exposed myself to toxins purposely, that is for certain. Is the mold growing inside the walls again? I leave this topic aside as it is still unfolding and unsettling and unsettled.
I am at a crossroad. I want to live a healthy life in a milder-than-CNY-can-offer place. I want to be able to let go of the house that has served me well here and the yard the dog has grown up to be his best and happiest self in. The thought of adventuring across the country alone to move has been a bit troubling, but I must have faith and strive to get that can-do spirit reinvigorated. The work ahead is daunting and in process.
I am happy that one of my very dearest friends will be here tomorrow to visit and be my companion for a little over two days. I know I will benefit from proximity and ability to laugh and talk and be together. Hooray for Lisa and all she has been in and to my life!
Other important matters I have no control over have been in my backdrop intruding into my head. It takes effort to squelch them after giving them attention. All and all, this is a bit of a trying time. And yet...and still...it is the anniversary date of an event that was significant.
I'll end this with the thought of manifesting one's best notions...or dreams. I have a history of manifesting the ability to purchase things I want at reduced and affordable-to-me prices and getting parking spots when it would seem to others to be impossible. Hmm...I want to take this to a new height...and make my truest dreams come true. Now that I have written that, I think I will go ...mysteriously...because only I know what I mean by dreams come true.
Sante! My dear friend Katerine KC and I toast together and she says the Italian, Salute! and I say the French, Sante! In the truest form, I say cheers to health on this day of honoring where I was at one year ago. May I one day be able to report my dreams come true!
One year ago, I rejoiced as I came home from my last treatment...well, as I recall, and I had to look back to verify, it was a tricky thing because I had driven myself to treatment but realized in the chair that I really could not drive myself home. I called a friend who I had not asked for help during my chemo and she had to squeeze me into a bunch of already arranged do-for-others errands. I recall it was hot out and I sat in the back of the car. We had to pick someone else up and when I made it home and got dropped off....then I was relieved. I had endured not only the treatment, but the humbling aspect of having to inconvenience others to get through the ordeal. I accepted most offers for help and hated like hell to ask for anything not offered from anyone. I think that is just part of who I am because I still have those same difficulties. I was eager to be on with it...living fully and accomplishing more than maintenance through the difficult.
The current struggles have to do with lack of finances and what one goes through in order to survive in search of thrive. I can see clearly that choices I felt were what I needed to do were overall harmful to my being. The job I accepted has been toxic...in the truest sense of the word. I was with sinus issues immediately but thought perhaps they were due to the cold lobby and adjacent block wall I was stationed next to and the exposure to so many people with my somewhat weakened immune system. It turns out there was black mold growing profusely beneath the wallpaper and the worst of it was right where I was stationed. After that nightmare was unearthed and abated, painting commenced and the fumes effected me gravely. Coming forward about it has netted me a shunning treatment that recently led to everyone who was per diem and untrained going to a two week training that I was not told about nor able to take advantage of. Nothing like feeling like your earnest and professional efforts to serve the not-that-great State of NY are more than unappreciated. To know one is on one's way out is a force to reckon with. Maintaining self-worth and knowing in my heart and soul that I have done an outstanding job without training and interfacing with hundreds of folks a day, respectfully and courteously...and knowing how many of them have walked over and thanked me for being real and concerned is yet another challenge. For the truth shines in the background while in the foreground is the knowledge I am not wanted nonetheless. And I still struggle to learn the types of mold I was exposed to as I await my long-awaited appointment to be seen by occupational health professionals. I still have sinus issues and my respiratory system, per recent tests, shows signs of having been harmed. Damn it all. I never ever would have exposed myself to toxins purposely, that is for certain. Is the mold growing inside the walls again? I leave this topic aside as it is still unfolding and unsettling and unsettled.
I am at a crossroad. I want to live a healthy life in a milder-than-CNY-can-offer place. I want to be able to let go of the house that has served me well here and the yard the dog has grown up to be his best and happiest self in. The thought of adventuring across the country alone to move has been a bit troubling, but I must have faith and strive to get that can-do spirit reinvigorated. The work ahead is daunting and in process.
I am happy that one of my very dearest friends will be here tomorrow to visit and be my companion for a little over two days. I know I will benefit from proximity and ability to laugh and talk and be together. Hooray for Lisa and all she has been in and to my life!
Other important matters I have no control over have been in my backdrop intruding into my head. It takes effort to squelch them after giving them attention. All and all, this is a bit of a trying time. And yet...and still...it is the anniversary date of an event that was significant.
I'll end this with the thought of manifesting one's best notions...or dreams. I have a history of manifesting the ability to purchase things I want at reduced and affordable-to-me prices and getting parking spots when it would seem to others to be impossible. Hmm...I want to take this to a new height...and make my truest dreams come true. Now that I have written that, I think I will go ...mysteriously...because only I know what I mean by dreams come true.
Sante! My dear friend Katerine KC and I toast together and she says the Italian, Salute! and I say the French, Sante! In the truest form, I say cheers to health on this day of honoring where I was at one year ago. May I one day be able to report my dreams come true!
Wednesday, May 21, 2014
...it's been a while...
...tomorrow will mark the one year anniversary of my last infusion of chemotherapy.It is a distant memory...sitting in the chair in the infusion room and being poked and inundated. I had just the right head-space going to consider the therapy as a ticket out of the imminent threat of death that stage iv diagnosis gave me.
I thought that once I was over the cancer, had an adventure on the open road and settled back into life without all the medical appointments, life would be grand. Some of the unforseens have really got me questioning myself. I thought I really had it down: never let fear cast it's shadow on life. But, alas, going it solo has worn me down. I have been too hopeful at times I shouldn't have and it seems my tolerances are down. I think I did better handling stresses while I was undergoing treatment and that seems strange.
I have felt and told others that having cancer taught me a lot and that I saw the myriad ways that it actually enriched my life to go through that difficult time. Hmm...what about how you feel post cancer? Lot's of glee fully accessible to my heart...yup, still true...ability to handle a difficult job dealing with hundreds of people a day...yup, compassionate and smart enough...but ability to handle being disposable and unappreciated...not-so-good. And maybe that's really it. The stress from my work situation has taken a toll on my soul.
So this post-chemo one year later time is one in which I have to go the next step: fully stand up for myself and worry not about what shall happen. It is time to remove that which harms me from my life as best I can.
I am awaiting the results of my ct scan with contrast and CA-125 lab results. My CA 125 number has twice doubled, but as of 6 weeks ago, it was still within the normal range. I have not liked it's doubling and have admittedly worried some over that. I am currently on a very clean diet and log all I eat. I am in the process of shedding extra weight, and although it will have to be a long process, it is one worth doing. My joint pain has decreased significantly since I began 15 days ago. I do take turmeric and pepper with flax seed oil daily, too...and have made it a priority to afford my Herbal Aloe Force supplement. I have thought about what I will do if cancer rears itself again, but never let the concept ferment.
I shall flush this missive out on the anniversary of the last chemo and give more thought to what is important to share in the meantime.
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