Jamaica breezes

Here is a pic of my sister and I on the cruise to Jamaica. I love this picture because we had so much fun! It was after our horses ran around in the surf for about 20 minutes. I was exhausted but it's a memory I will always cherish!

More travel

As long as my health permits it I have more travel planned! I went to my sister's house in Florida in January and have decided to try to plan one trip per month to different places. On Feb. 21st I'm going to see my brother Shawn (whose cheery face was in my previous posts picture--see my little bit of hair?) in Virginia. He lives in Charlottesville, a cute little town. Then in March I am going back to Florida to help my sister with the American Cancer Socitey Relay for Life in her town. She insisted I come so I couldn't get out of it. I have a surprise trip for April! My friend Carol told me that her son was traveling to Ireland and didn't have anyone to go with him, so she offered to pay for me to go with him. I said hell yeah! Who could turn that down? I mean, I am grateful to her for spending so much money on me, and I gladly accept the offer. Were flying into Dublin, then going on a bus tour to different cities. It's an 8 day tour! It's one of my New Years resolutions for this year, to travel to Europe somehow. Maybe next year it'll be Rome or Paris! In May my sister and I, and a friend of hers, are planning to go to NYC for a weekend. Neither of them have ever been and I tell them all the time how beautiful and fun it is. We should have a blast. I don't have anything planned for June yet, but I still have time. : ) I have a friend getting married in Montana in July. After Ireland that would be my next big trip. I have never been to Montana and I'm looking forward to it. The picture I attached to this post is of my sister, Maryellen, and I on the cruise. My sister and Maryellen ran and exercised everyday. I was proud of them because I laid around.

Good news!!!

I had my first scan this month and got some good news. The Navelbine is working! There was a drastic improvement from my last detailed chest CT in September. The tumors and lymph nodes were being measured in Centimeters then and now they are being measured in millimeters, and some of them don't even show up on a scan anymore! I had an enlarged left armpit lymphnode. It's improved so much that it's not even showing up on the scan anymore. At first I had a hard time believing it. I've had so much bad news I didn't think this could happen. I was in shock. The news has sunk in, though I do still feel a bit skeptical, but that's just me. I am extremely happy that something is finally working. So yeah!! I have more time and that means more to me than anything in the world!!

I loved the Tropical breezes!

I had an excellent time in the Carribbean. I hope that's spelled right. I never can remember. I had so much fun, I'm already signing up for my next tropical cruise, next December! I have started thinking about doing a European one too. I don't know, I'm just looking into it. I liked it because I could pace myself and not worry about not having enough time to rest and relax. I thought Jamaica was the most beautiful place, but was saddened by the poverty on the island. The shack houses were disturbing. I can't imagine living in one of those during a hurricane. They must blow away everytime!

Grand Cayman was just beautiful! I wish we had explored the island more but after we snorkeled I was exhausted! It felt like I ran a marathon! We only snorkeled for about an hour, but I was really beat. It was so cool, seeing all the pretty fish underwater. I also conquered one of my fears, which is being in deep water with a wreck under me. It just creeps me out, but I did it! The water was so blue, I think I've never seen that shade of blue. I'll post some pictures so you can see.

The best part of the trip was the horseback riding excursion we took in Jamaica. I haven't done something like that in a very long time. It was a lot of fun, but a little scary when they took us into the ocean and ran our horses around. I thought I was going to fall off twice because they took our saddles off and it was bareback in a beautiful cove. I have had several people tell me I looked terrified in the pictures. I tried to weed those ones out and get rid of them.

It was kind of a let down coming home and being in the NY weather again. Even though it wasn't that cold, It was still depressing.

I plan to go to Florida in January to visit my sister and am thinking about all the great places we can go next year.

Treatment is continuing the same. I am still receiving Navelbine and it seems to be working wonders on the inflammation in my skin. It's almost gone except for one small scab. I am pleasantly surprised. This week we set the date for my first CT scan. I can't wait to find out what it's doing inside.

It's going to be a hard week.....

It was not a good weekend. My mother suddenly died on Saturday. For all of you who know about my relationship with my mother, this hasn't been an easy thing (see my first blog for understanding). My sister called me on Saturday morning and told me my mother had been in the hospital all night and they thought she had pnuemonia. Then in the middle of the night the nurses called and told my sister that my mom wasn't doing very well and that she thought they were her daughters. So that morning the Dcotor called and told my sister that she didn't have much longer because her blood pressure was very low. She had a clot in her aorta and fluid around her heart that they couldn't drain because they feared she would die. So my sister and I left to go to the hospital, she lives closer than I do. Neither of us made it in time. She passed right before we got there. I was so glad to have my husband with me. I don't know how I would have made it through that day without him. I was completely shocked because I didn't expect it so soon. We knew that she had cancer, which she denied, but we never expected it to come so quickly. It's hard to say exactly how I feel. Of course I'm upset because she is my mother, and my only living parent, but at the same time I am almost relieved because I knew she had problems and she wasn't a happy person. She didn't enjoy life and I think she wanted to go for quite a while. My sister Karen is extremely upset because she didn't get there in time to say goodbye and she said that "mom died alone." I told her not to be upset. Even if we were there chances are she wouldn't have recognozed us. And she didn't die alone. The Doctor and nurses were there with her. It might not have been one of us, but at least she had someone with her. I just hope that wherever she went, she has some peace and her soul rests. I prefer to think of her seeing my father again and smiling. That's the way I will think of her.

Hospital Daze

I hope you never have to spend a week in the hospital with tubes stuck in your side. It was one of the most humbling things that has ever happened to me. Having someone help you go to the bathroom, help you take a shower and even brush your teeth is not easy. I am a very independent person and hate asking for help for anything, so when I had to push the damn nurses button to be able to drag my millions of tubes and IV pole to the bathroom, I hated it. I had this box attached to my chest tubes that constantly bubbled like a "babbling brook", or at least thats what I called it. It was maddening and at the same time comforting. It was about two feet high and a foot across and it collected all of the bodily fluids coming out of my lung. It was a curse during the day because I had to take it everywhere AND drag around an IV pole. It had a little handle for easy carrying. It was comforting because at night it was the only sound in my room, a bubbling sound like a quiet stream or brook. I fell asleep listening to it bubble and flow. I convinced myself it was like falling asleep near a beautiful stream, so I listened, and it would put me to sleep. I think I did ok, mentally, while I was there. The only day I had a "mental" problem was Sunday. I felt depressed that morning and was thinking too much about my situation. They had used and abused the veins in my left arm and I wasn't too keen on letting anyone take more blood. I had been promised they would start taking it from my port only. A little Asian woman came in the room with the familiar labs cart and tried to take my blood. I told her no, stop, someone was coming to take blood from my port, but I think she didn't understand what I was saying. She mumbled something to me about my blood was needed "stat" and she kept trying to find a vein. I just freaked and started crying. My greatest fear is the loss of control of my life. I always felt like I could handle it if I had control over things, even something as small as whether or not blood would be taken from me. It all kind of just came rushing to my brain at once. Loss of control, feeling tired of being sick and just damn tired of being trapped in a hospital stuck to these tubes and IV's. I was bawling at this lady. Luckily an IV team member came at that moment to fix my port, and I didn't have to have blood drawn from my arm. But I was weepy all day. I hate weepy people. It was just a hard day. The hardest part was thinking, I hope this isn't a taste of what's to come. If it is, I'll be crying a lot more. It's hard for me because I am not a crier, and I don't want others to see me cry. I was so glad when I got my release from that place. It made me confront feelings that I have been tring to avoid for a good year and a half. I hope I don't have to do it again...for a long time.

I know it's been a long time........

Wow. I haven't posted since June? I can't believe it. I'm sorry. I spent most of this summer suffering from the chemo drugs. I was too sick and exhausted most of the time to even think about getting on and typing. At one point I was so tired I could barely type for more than a few minutes, so I decided to stop answering my email for a while. I wish I had better news. I wish I could tell you that the clinical trial was a great success and that I have conquered it and whipped it into submission. I wish I could say that. It just kpet it at bay for about 5 months. It didn't grow, but it also didn't shrink. The only thing that saw great improvement was my skin. It almost completely cleared up the skin cancer portion, it looked great. But, within a week of stopping the drugs, it started to grow again, quickly. It's been about a month since I have been off the drugs and its gone wild and has completely covered the right side of my chest. It's back with a vengeance. I haven't started with a new drug yet because my blood levels haven't been normal enough yet. It turns out, if I had continued with the drugs my body would have broken down soon anyway. That same week my hemocrit levels dropped, I had to have a blood transfusion, then my platelets dropped dangerously low and I had to have a platelet transfusion too. Ever since then it's been a roller coaster ride. The blood levels went up and down. On the 12th I went in to have a Pleuridesis (have fluid taken out of my lung sac--permanently). It was more of a major surgery than I thought it would be and I ended up spending a week in the hospital. I'll type more about that sometime. It was quite an experience. So now here I am recovering from that. I am going home to NY on Friday and I feel like I am going to miss my sister so much. I feel bad because I have put her through so much stress and anxiety in the past month. She is glad I gave her a chance to help me, but I feel like she definitely needs a break from this. It's tough to live with every day. My husband misses me and I miss him too. I can't wait to meet the little kitten he has taken in. : ) I already have a plan in place, thanks to a visit while I was in the hospital from a breast cancer researcher who gave me some hope about a new drug, and I have to put everything in action this next week. I have to make appointments, pack clothes and take care of details. Most of all I have to get better so I can get back on a chemo drug. Everyday that I am not taking something to kick cancer's ass is making me more nervous.

Goth chick? Or just Gone chick?

News on my treatment......

Here I am once again....no hair. Oh well. But we did have fun with it. We got wasted and then shaved it into a mohawk! It was hilarious! We spiked it up and then I put on some tough biker chick outfit for fun. Loved it. I'll post some of those. I'm sorry that my posts are coming out as one big paragraph but I am using my sister's computer in Florida, and for some reason it won't let me enter and continue on another line. I had the results of my first CT scan given to me, as many of you already know. The CT scan said that my cancer is stable. No progression, no regression. I have to admitt I was a little disappointed by that at first. I wasn't expecting a miracle but I just had a feeling it was doing more than what it did. I mean my skin metastisis has cleared up really well. It's a lot flatter, less red and kind of scabby like it's trying to heal. That has NEVER happened before with any chemo. When I saw that I was ecstatic. It's been the toughest to get rid of with this Inflammatory cancer. I won't "look a gift horse in the mouth" as they say. No progress is good news. I've also never had that before. It has always progressed. If this aggressive crap wants to try to hold onto me, it can keep trying because I have a feeling this treatment is going to kick the crap out of it in the long run, I just hope my body doesn't give up before my spirit does. I have had nonstop diahrrea with each treatment and I am so sick of it. It starts the second day after treatment and lasts almost the whole week and usually clears up the day before my next treatment (I get treated every Tuesday). I had to go to the emergency room a few weekends ago because I started having very bloody stools. It scared the hell out of me. Turns out my colon is just irritated or something. No shit. I'd say it was irritated?!? What a diagnosis. So since then I haven't had the blood. I'm glad. I spend my days trying to come up with things to do. I've already talked my sister into letting me help her renovate her kitchen and we have painted the furniture on her porch. I'm going to tile her kitchen counters. I thought it sounded like fun. I taught her how to crochet now she is addicted like me! We bring crochet to the cancer center when I go for treatment. It usually lasts about 6-8 hours because I get four treatment bags that have to be infused over a certain amount of time. I noticed they don't have enough blankets so I am crocheting a blanket for them with a new stitch I taught myself, the cornflower stitch. She's making an afghan for her husband first, then she'll do one for the cancer center. So I am trying to keep busy, I just get a little bored and depressed every once-in-a-while. It's not too bad. I am going home next week so I can see the hubby. I can't wait!!

It's going.....

I know many have been waiting in hot anticipation to hear about my experiences. Here's some important info......cancer drugs suck! I have had two full treatments and one third of one. My last treatment, on Tuesday, was only one of the drugs instead of all three so it wasn't as intense. I have had the worst side effects on these drugs that I've ever had. I have been having diahrrea going on eight days tomorrow that will not stop! My sister and I have tried everything to get it to stop and I think tomorrow its time to call the doctor. I mean, I've already gotten some drugs from them once that were supposed to control it, I've tried immodium, I've tried different foods....NOTHING is working. I JUST want it to go away, at least for a few days before my next full treatment!! UGH!!!! Last weekend I had a sore throat and a low grade fever and it just got worse and worse until Monday, I could barely speak, so I was put on antibiotics for that. I'm taking so many different drugs, I'm not sure what could be still triggering the diahrrea. Can you tell it's driving me insane? My sister has been really great. She spent this evening feeding me everything she could think of in her kitchen to get me to stop having my assplosions! Boy do I owe her! Oh yeah, and I have no appetite, but I still ate a little of several different things. It stopped it for a few hours, but it came back full force. Anyway, I'll talk to the doc's office tomorrow, and see what else they want me to do. The only good thing about it is, I have lost 8 pounds. Jim says that's not so good because I may need that later, but I fit better in my clothes and I do like that.