Happy Saturday After Thanksgiving

Scott and I just returned Tuesday from a wonderful week in Maui. Though I really do not care much for warmer weather I have to admit that the warmth of the Hawaiian sun resulted in reduced pain levels and a temporary reduction in pain meds. I was not really aware of how much until the wave of pain that I didn't miss at all returned. In Maui we met quite a few people from this area who are now residents. They say Maui calls to you. Scott and I would never come back except for a few things, SCCA, my mother, our daughter and his need to go into the office once in a while. Not necessarily in that order. It makes moving to LA, where I can get better sarcoma care,  look a lot more attractive too.

An interesting thing happened while we were gone. Very few people knew about this trip because of our interest in internet security issues. A culprit, who shall remain nameless, admitted to mentioning our whereabouts on the internet. An event that was undone quickly, once the potential security leak was pointed out. Upon arriving home our neighbor mentioned that he had seen a U-Haul truck sitting in front of our house one day. He did some investigating, making it obvious to the occupants that he was watching them and kept a close eye on them until they finally left. Perhaps they had some legitimate business sitting in front of our house and these two incidents are not related at all, but they sure made us think hard. First, about how thankful we are to have such an observant neighbor who used to be a officer of the law. Second, about how important it is to be aware of internet security for everyone who uses the internet. Even us old fogeys who do not have the same kind of security issues that teens and pre-teens have on the internet.

BTW, our house was not broken into. Everything was safe inside when we got home. So, the moral to this story is probably something like this: Do not advertise it on the internet when you are going out of town for a while and if you know someone else that is going out of town it is also a good idea to keep that to yourself. You can never be too careful about your own security OR that of others you care about.

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Coming up this week. More chemo. They have dropped the gemcitabine since it is suspected that is the cause of my blood count issues. Next week I have an MRI and appointment ordered by and with the head of the sarcoma program at SCCA. They called our second day in Hawaii and woke us up so we did not get much of a chance to ask why they have asked for this appointment, but considering the less than stellar test results we have had of late we think it must be for a very good reason.

Clueless

Bad News, we got some scan results yesterday from the Friday CT and found out that the pain in my hip is probably increasing because the tumors are growing and there are more and larger tumors in my lungs as well. That is a partial report that Pam (my pain specialist) read to me because I do not have an appointment to see the doc to discuss it. I am still waiting to see what the doc's office has to say about it. My thoughts are that the recent radiation didn't help a lot, if at all, maybe they knocked the growth back some, but  not enough to outpace growth. This is actually news we sort of expected because of the way my body reacted when I had radiation.

Good News, it looks like my liver is still clean. Same for kidneys. Despite the gravity of the situation I am still in pretty good spirits. No point in tears and sadness, right?

Just News, I was unable to have chemo again on Monday. Platelets were too low. I gave myself three Neupogen shots so my white blood cells would not prevent that from happening again.

I have no idea what do to next or where to go from here. Is there something out there in the universe telling me that Gemzar or Avastin are not right for me?

Yay, it's a new day!

I got my new Power Port today (Monday). Do not know why I did not do this sooner... It was not so bad and truly wonderful when it comes time to draw blood or get chemo.

Chemo went OK too, but tomorow and the next few days might be telling another story. Stay tuned...

Sometimes I feel like I have bitten off more than I can chew...

...and this is definitely one of those times! I owe everyone I know an update and yet I simply can't find the time to individually contact every one / each group. So, this will have to do. I hope you all, or at least those who see this, understand. I have just been feeling like there are not enough hours in a day a lot lately.

Tomorrow (Monday) is chemo. It had been delayed from last Monday which was the original date. The reason it did not happen then is because we just decided that I could not have any more chemotherapy without a port. The last time they poked my arm so many times that I looked like I'd been through a war zone for the following month. So now they won't be able to do that again. I am not very excited about this at all, but the time has come. My schedule is two weeks of chemo, then two weeks off. That is one round, then after that the next round begins with two weeks on and two weeks off and they will follow that schedule for future rounds as long as the white blood counts do not tank again.

Next week, I will also have some scans that are way overdue. We need to see how things look in there and if there is any sign that all the radiation I had over the last few months might have been successful. I am not holding out a lot of hope because I have not really seen any signs of improvement.

The party for my mother's 80 birthday was really a blast though. As much as it is mostly why I have been so out of touch, I am very glad that I devoted so much of my time to planning it. There were 63 people there, including her two brothers who came from Idaho and Utah to be with her. To be able to give a gift like that to my mother is..... well... priceless.

Now, I wish there was something so wonderful that I could do for Scott to let him know how much I love and appreciate him and how much I always will...

Sunday Night

I said I'd update this every day or every other day, didn't I? I just don't think my life is that interesting. Especially now as I feel like I am just circling the drain. It has been one week (tomorrow) since my last radiation treatment and I am not feeling any better, but then again I am also not feeling that much worse. Kind of a position of limbo or something like that. Maybe the radiation is knocking it back just enough to give me a few more days, pain or no pain... well... since there is no such thing as no pain, just a few more days to appreciate life and wish it would just go away. I am still thankful for each day, however, my life is kind of boring. Maybe it is just that dying from cancer is really boring.

Dr Kelly wanted to see me on Tuesday, but her schedulers didn't bother to consult with me about my own availability and just sent me a notice. Sadly, I have both a dental appointment and physical therapy at the same time. So, I called and asked to reschedule for a time that I am actually available. They said they would have somebody call me to reschedule. The next day I get another notice in the mail with another appointment to see Dr Kelly, in one month. What is it they don't understand about please call me and set an appointment with me in person?

Little frustrations like this have been bothering me a lot lately.

I missed a wedding I really wanted to go to yesterday. It was in California and the trip just would have been too long for me.

Mom's 80th birthday party is in just under two weeks now, on the 24th. The plans are coming along for that quite nicely and it looks like we will have over 50 people there too. What a great thing that will be for her. All of us really. I need a party and to see some of the people that will be there like my sister Nancy. I am so looking forward to that.

Then I will begin chemotherapy again on the 26th.

So, that is just about all that is going on in my life, except I am working on a senior portrait. That really is a lot of fun! It is one that I donated to an auction back in 2007. Wonderful mom and delightful daughter. I might post some of the session images at dA. http://e-cj.deviantart.com later this week if I run out of other things to do.

Does anyone read this blog? Please let me know if you do and I will be sure to keep writing when I can. The lack of responses to most of my posts tells me that maybe my time might best be used elsewhere. So, let me know if these posts make a difference to you.

Have a great day!

Smiles, CJ

Holiday Shopping Season Is Upon Us

It is coming and I do not want to inundate my friends and family with ads, but I do want to post a gentle reminder that all proceeds from anything purchased in the Smiles Shops go to help find a cure for leiomyosarcoma. Also, if you enter Zazzle through my special link http://www.zazzle.com/cjmorgan* (that star * is the secret) you can purchase things from any other Zazzle shops (including Disney licensed shops or team logo shops) and the Smiles fund will still get a nice referral fee for that too. (You must have cookies enabled!)

It doesn't cost you any more to use my Zazzle link, so if you use it to buy items that you would buy anyway.... well.... everyone wins!!! ... and you will have my undying appreciation for your help with finding a cure for this horrible disease. Even if it doesn't come in time to save me.

Pain Pain Pain

Today is Wednesday, 3 more radiation treatments to go. This morning Scott's sister Becky came up to meet us at the hospital so it was especially nice. We haven't see her in a while. It almost made radiation a treat.

Last night was very difficult. I could not sleep and kept waking up in pain. My solution finally was to go downstairs and sleep in the chair, but I did not wake Scott up to come down and tuck me in. I did not want to bother him, so instead it was a comedy of errors. I got the blanket and pillows from the sofa and hobbled over to the chair with them. After dropping two pillows on the footstool, I sat down and pushed the third pillow behind my head and just sort of dropped the blanket on my lap. That is how I fell asleep. I awoke later crying in pain. My feet were freezing and I could not get them up over the pillows on the footstool so I pushed the pillows to the floor and tried to get the blanket over them. That is about where I was when I went back to sleep. I woke again crying and took some pain pills. The footstool was a little too far away from the chair so my feet were barely hanging from the edge. I decided that trying to get my chair/bed set up all by myself was not a good idea. I really need someone to tuck me in. How helpless can one person be? I went back upstairs and sat on the edge of the bed. That is when Scott woke up and put two big pillows under my knees so that I could get back to sleep.

Later, when he was ready to get up for the day, we went back downstairs and he got me all tucked into my chair. So, I did get a couple of hours of fairly decent sleep. Today I am thinking that getting a good nights sleep in a normal way is something that I might never have again. It was just about this same stage of the last round of radiation where pain control went out the window. What a miserable weekend that was. Pam is on vacation now, until October 7th, so I hope someone at the pain clinic will be able to help me figure out what to do so I do not have to repeat that again.

As I wonder what happens next I can't help but think that bad days might outnumber good days from here on. What happens when I cannot tolerate the pain at all anymore?

Friday

It's Friday, which means that my radiation is almost halfway done. Pam, my pain specialist, returned my call today and I finally got to talk to her after a week of telephone tag. The patches she gave me have not been working very well. At first there was a lot of problem with sticking and falling off, but this last time I decided to try a new spot, high on my chest, almost my shoulder. Well, it stuck finally, but I developed contact dermatitis. So, Pam immediately decided it isn't going to work and has me going right back to the old methods. So, we can't say we didn't try. Now, I need to find someone close enough that I can give the leftover patches to. I am not sure about mailing them, but I will if I can't find someone local that I can just give them to. Please contact me (regular e-mail is probably best) if you can use them. They are the generics from Mylan.

The radiation is going pretty well, I feel like there is a little sunburn, but it is not visible on my skin, So I think it is OK so far. The three hour hole it knocks out of each day isn't so great.

Have a great weekend, everyone!

First Blog

Hey, I am a blogger now!

I have contemplated moving my journal to a site that would be easier to update. Then I decided it would just be easier to start a new blog and link it back to the journal, just in case I decided to keep that one up too. Well, one is probably enough. If that is the case it will probably just be this one.

So, the old journal is here http://e-cj.home.comcast.net/LMS-J.html
The other journal (more of a nutshell) is here http://e-cj.deviantart.com/journal/19975230/

My first update, which I know you all want yesterday, is here:

I had a follow up meeting with Dr Kelly, my radiation oncologist, a couple of weeks ago. She said she thought that a little more radiation could help me. She ran it by Dr Goff, my medical oncologist and primary case manager, who said yes, anyone who thought they could do something that might help me was welcome to give it a try. So we did simulation last week. This week we had picture day on Monday. Tuesday was my first radiation treatment and today was my second. This time there will be ten treatments, so they will go through October 5th.

Then the chemotherapy that was suspended to do this round of radiation will be resumed. Otherwise I would be having chemo Friday instead of radiation.

If none of this makes sense, you can gets a few of the blanks filled in by looking at the other two journals.

BTW, one reason I decided it would be nice to do a blog here is because you can also leaves comments here. Please do...

Smiles, CJ