Monday, December 15, 2014
My CT scan that I had on Friday shows that 3 lesions that were on my liver in July have grown a little bit; they are growing slower, but they have grown, and there a few new ones too. The cancer has also now spread to my lungs; those spots are very tiny right now though, and also slow growing.
I wasn't expecting a "clean" scan, especially since I have had to postpone my chemo for over a month now due to the low platelet counts. (Which, by the way, when my CBC was done this morning, rose up to 91 from being 75 last week, a much bigger increase than I was expecting, but still too low to have chemo.) But what was hardest for me to hear, was being told that we may be running out of options with things to try. I knew that someday I would eventually get to that point with this disease, but to me, that "someday" was still quite a ways down the road.
The problem is that my bone marrow is just "worn out" from all the chemo I've had over the years, so that is what is limiting my options when it comes to treatment. He wants some time to do a little more research though, so I am going to go back to see him on Monday and I will found out then how we will proceed from there. If he does decide to continue with the chemo, I will have that the Friday after Christmas.
One of my cousin's was with me today, so at least I was not alone. It was very hard to hold back the tears and not cry until I had left the building. It's going to take me some time for all this to sink in, it still feels like a shock to me.
It's so hard to tell my close friends and my family about this, so soon after losing my mom. I know it's nothing I can control, and it's not my fault, but I can't help but feel that I am letting everyone down.
Wednesday, December 10, 2014
Once again, chemo has to be postponed because of my platelet count. I was not surprised though; I really did not think that the counts would get up to 100 which is the minimum at which my doctor will allow chemo, since last Wednesday they were at 71, and had only crept up to 75 on Friday. I asked if I could get get my blood counts checked at our local hospital next week instead of having to make the trip to the cancer center when it's not that likely they will be up high enough next week either, and I was told that I could.
So, I'll be getting my lab work done at our local hospital Monday; I am on the schedule for next Wednesday but they will call me after they get my blood count results and let me know whether I am to come in or not. If I can't have chemo next week, (and I really don't think those platelets will be up high enough, based on past history) it will at least save me one trip next week. I can get the lab work done here in town if it's just a complete blood count needed, but I will still need to get it done at the cancer center once a month for the more specialized lab work such as the tumor markers.
Once my counts do get up high enough where I can start it again, my doctor is going to put me on a 28 day schedule, instead of once per week for 2 weeks in a row then a week off. Having it only once every 28 days will hopefully keep those blood counts from plummeting again, and it will be easier on the rest of my body too.
I also stopped to fill my prescriptions from the pain clinic. Unfortunately, the pain patches that I was prescribed were out of stock, so I will have to wait until Rite Aid sends out their order tomorrow and they probably won't be in until Tuesday. At the pain clinic I go to, all patients on pain meds must sign a "pain contract", and one of the rules are that all pain meds have to be filled at the same pharmacy, so I was not able to take it somewhere else to get it filled. I know they have that rule because there are people who abuse those kinds of medications, but it's sad that the ones who do make it harder for people who legitimately need them to get them filled. I will be ok waiting a few days though; I've never been on the patches before, and I've lived this long so far without them, so waiting a few more days will not be a hardship for me, and I still have my oral pain med, so I am not any worse off than I was before.
Tuesday, December 09, 2014
I had my followup appointment this morning with my PA at the pain clinic, it was scheduled on a day when my doctor was also there, in case anything on the x-rays of my left hip that were done several weeks indicated any problems that could possibly helped with an injection. My x-rays only showed healed bone mets and arthritis, and since the injections I have had for that hip for the past couple of years haven't helped, my PA didn't feel that any would help me today either. Even if they were to help, I cannot have them right now with my platelets so low because of the risk of bleeding.
He has also worked with my oncologist before, so he knows a lot about how the chemo is affecting my body and the pain. I've had more all over joint pain since starting the I.V. chemo again in October, but it's still in that left hip and knee where I have most of my pain.
He is going to have me try a pain patch. I can still take my oral pain med along with it, but if this patch helps, I might be able to cut down on the oral pain med. I'm sensitive to the side effects of so many medications though, that I am going to wait til Saturday to try out the patch, my biggest concern is how sleepy it might make me feel, so I always like to start a new med when it's a day I can stay at home all day, if possible. Tomorrow I go for chemo again (if my platelets are up high enough, which I am not getting my hopes up for), Thursday is a dentist appointment that was made 6 months ago for a cleaning and check up, and Friday morning I have the CT scan that my oncologist ordered.
At least today, since I did not get any injections, and therefore no sedatives, I can least do my workout this afternoon. I think if I can get 4 days in this week, I will be doing good, and so far, I've done my chair workout both Sunday and Monday of this week.
Just getting through this week by taking it one day at a time, it doesn't feel quite so overwhelming that way. I did my grocery shopping yesterday, so that's 5 days in a row where I've had someplace I have to go each day, something I haven't been use to doing in a very long time. I'm really looking forward to the weekend when I can just stay home and go at my own pace.
Saturday, December 06, 2014
Yesterday, I had to go back to the cancer center to have my blood counts checked again. My platelets (which are what has been causing the delay with the chemo) went from 72 on Wednesday to 75 yesterday; hemoglobin from 10.4 to 10.6, and red blood count from 3.5 to 3.6. That didn't sound like an encouraging improvement to me at first, but my nurse told me that it was actually good improvement in just 2 days. My doctor was pleased with it anyway, and I'm glad that my counts went up instead of down. I was also told that the counts going up shows that my bone marrow is working hard to repair itself.
So for now, we will proceed on as usual. I am scheduled for chemo on Wednesday, depending on if my platelets are high enough by then. At least for now I feel like I can relax a little and not be so anxious about things. I was also told that Halaven, the chemo I am on, is hard on the blood counts, so it sounds to me like it's just the chemo causing the problems with the blood counts, and not anything new going on with the cancer.
One thing I've learned about worry; it gets tiresome when you do too much of it; it gets to a point where you just don't have the energy for it anymore. It saps energy that could be used for other things, such as exercise, house cleaning, etc. So for the time being at least, I'm content to just let things be.
Wednesday, December 03, 2014
Despite the blood transfusion 2 weeks ago, and not having had chemo for the past 3 weeks, my platelets dropped more, from 87 last week to 71 today, so I could not have chemo again today for the 3rd week in a row. My hemoglobin dropped too, from 12.7 to 10.4 today; the hemoglobin isn't low enough for a transfusion, but my doctor is concerned about why that and the platelets have both dropped that much in just a week. I didn't talk to him today, because he was not at the cancer center today, but my nurse talked to him. It could be that my bone marrow is just getting worn out from all the chemo I've had in the past, or something else is going on.
I have to go back Friday to get my blood counts checked again, and they want me to stay and wait that day until they get the results back, in case something else has to be scheduled, like a platelet transfusion. My oncologist will decide after he gets my lab work on Friday whether to try to proceed with the chemo next week or not. We still have to wait and see what happens with the CT scan too; still waiting for the hospital to call me about getting that scheduled. When I asked my nurse about it today he told me they are probably just waiting for an opening in the schedule before they call me.
I'm really trying not to worry about things, but it's hard; it's the uncertainty of what might happen next that has me feeling anxious. I was just getting use to the side effects and the routine of this chemo, and now I might have to change treatments again. It's also hard to plan things ahead of time when I can't be sure of what my chemo schedule will be, and not knowing when my "official" weeks off are. I've dealt with low hemoglobin counts before, but in all the years I've been in treatment, I've never had a problem with the platelets before, and I've never had to have a treatment put off for more than one week due to the blood counts.
I brought my camera with me today, and while we were in the waiting area, my friend got a picture of me. I'm not looking my best in this photo, but at least you can see my new haircut.
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