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December, 2002

Everything is still going well, healthwise. I continue to have some issues with radiation recall in my leg, but nothing major. One of the scars below my collar bone has become really sensitive, but that has been explained before as damage under the skin from chemical burns from one of the chemo drugs leaking. Again, nothing major. All in all, a really good time for me healthwise! Next CT, MRI's, bloodwork, etc., etc., are scheduled for January. My appointment with Dr. Harmon (hematology, oncology - he does the follow up) is on January 16th, so I will post the news after that. Everyone think "no more cancer" for me, please!

September, 2002

June scans were clear for sarcoma, but still evidence of the sarcoidosis. I have to say, I still do not notice it. My bloodwork In April showed higher than normal levels of some liver stuff (how's that for technical? Just when I thought I knew every medical term in the book!). They have been following it, and when I had my June scans, the levels were closer to normal. So, more bloodwork... and still the levels are closer to normal than not. They wanted to make sure the sarcoidosis was not affecting my liver (that would cause elevated levels in my bloodwork), and the conclusion is that the high levels they got in April were just a freak thing. So... next scans are in December, and next Sarcoidosis appointment is in FEBRUARY! Yep, you read right. They are no longer considering the sarcoidosis a serious threat to my health (they are considering it to be in "remission" even though I never had any active symptoms), so we are going 6 months between those appointments too. I remember the days when I longed for just one week without Dr's appointments or hospital stays... now I have entire MONTHS without Dr's and hospitals!

I have had some stress at work lately, but typing the above news gives me some much needed perspective. I have to say that my work problems seem insignificant right now. It's so easy to loose sight of what's really important and get caught up in all the petty details of life. My health is the important part. Some of the members on the sarcoma list serv I belong to on ACOR have lost their fight with sarcoma recently, and this gives me perspective too. I know how lucky I am. My thoughts are with their families and friends. It's just so wrong -this damn disease.

Wednesday, April 3, 2002, 12:20pm (EDT)

I admit it... I've been really bad about keeping this page updated. I just changed the e-mail address, as my new e-mail is: cynthia.fenton@verizon.net. Everything has been going great! I had check ups in August and in December, and graduated to six month visits. So my next appointment is in June 2002. The sarcoidosis shows up on the scans, and blood work shows some abnormalities that are attributed to the sarcoidosis, but no more cancer! I hope I get to hear that for a long time. They are choosing not to treat the sarcoidosis at this time because I'm not showing any major effects of it. It could continue like this, not causing any major problems, and if it escelates, they will treat me with predisone. Yuck. Hope it dosn't come to that

I decided to take two classes this semester, at Cape Cod Community College, they are "Introduction to Computer Information Systems" and "The Legend of King Arthur". Classes are going well, and I'm really enjoying the whole being in school thing. Work is going smoothly, though we still do not have a boss, maybe that's why it's going smoothly, hehe. And I went on vacation to SanDiego in March! Jacqui and I went to visit Dustin and had an awesome time. Can't wait to go back! There is so much to do, you could really spend a month there. We went to Magic Mountain and Mexico as well, I can't think of a better vacation. Jacqui and I were actually happy that our flight out was delayed a couple of hours, we sat outside the airport and worked on our tans some more.

Within the next few days, I'll be re-doing the pictures section of this page, to include some pictures from SanDiego, some from Heather and Greg's wedding in January, and some from Robin's Christmas party in December. So stop back soon!

Oh- and a hair update-- I have lots of hair- lots of really curly darker uncontrolable hair. Clairol made it blonde again, and I can't do anything with it. I love it! I know I made the statement some where along the way when I was doing chemo that I couldn't remember what I looked like with hair. Now, I can't remember what I looked like bald.

Wednesday, June 6, 2001, 12:09 (EDT)

Okay! Good news! Preliminary pathology from June 4th shows it is Sarcoidosis! (this is the one that is NOT cancer) Currently, I am asymptomatic for Sarcoidosis. It is unlikely they will treat me at this time. In the event that I become symptomatic, they will treat me with steroids until the symptoms go away, and so on and so forth as nessecary. No problem. Thank goodness! In a rush to update my page, I accidently deleted my links page... so I will be working on re-doing that. Hope everyone has a great day!

Wednesday, May 23, 2001, 8:25PM (EDT)

Again, it's been a long time since I've updated this page. My last scans were on April 30th, and there were abnormalities on them that have not been resolved yet. The lymph nodes in my chest around my wind pipe are swollen, and I've been to a pulmonary specialist and recently a thoracic surgeon. They have done tests and eliminated many possible explanations for this condition, and now I am scheduled for a biopsy on Monday, June 4th (my Dad's birthday). The thoracic surgeon has been looking at my CT films, and his opinion is that it is one of four things. This is the list, starting with the one he thinks is most likely, and ending with the one he thinks is least likely:

  • Sarcoidosis- a chronic incurable disease that is treatable. People with this condition have long periods of reemission between bouts with it, and it is NOT a cancer. In the surgeon's opinion, it is a 2/3 chance this is what the problem is.
  • Lymphoma- yes, another cancer. This is actually better news than if it were a recurrence of the Liposarcoma. Lymphoma would be much more treatable, and he feels there would be a good chance for a cure.
  • Recurrence of Liposarcoma. This would be very bad news. Would not be very treatable.
  • Swollen Lymph nodes due to an unknown cause- he feels this would be highly unlikely, as the tests have pretty much ruled out everything else.
He told me they should be able to tell me the diagnosis the same day as the biopsy. This has me a little scared. I'm not sure I'm ready to handle this. Could anyone ever be ready to handle it? I don't feel the same as before my original diagnosis back in Sept. of 1999. Although I was scared then, I really did not believe it could be anything really bad. Now I know it could be something really bad, and there is definitely a sense of panic. I've been able to keep busy and keep my mind off this because work has been so hectic lately. I can't decide if I want the biopsy right now or if I just want to run away and never face it. I know it won't go away if I ignore it, but I have been looking forward to enjoying this summer for so long. Last year at this time, I was still bald and sick, now I have lots of curly hair and I feel so good. I don't want to spend the summer in a hospital hooked up to an IV pole and trying to figure out which anti-nausea med works best. I want to sit out in the sun and watch my plants grow and go swimming and have water balloon fights with my nephews. I want to go out with my friends and sleep late on Sundays. I do not want to have tubes hanging out of me and people feeling sorry for me. I don't expect a miracle. I'll gladly take the Sarcoidosis. Honestly, I'd even take the lymphoma, because at least I would have a chance at a normal life after treatment. But please don't let it be the Liposarcoma. I don't know what else to say. I will post again when I have more news. Pray that it is good.

Friday, January 12, 2001, 4:27 AM(EDT)

Okay, it's been a long time since I've updated this page- but no news is good news, right? I had scans in October, all were clear, and yesterday I had another round, same results, all clear. Blood work from yesterday came back good, levels of everything are pretty much where a normal persons would be.

A few weeks ago I became aquatinted with a latent radiation side effect- radiation recall. Basically, the cells in your body "remember" the radiation damage and the area where I had radiation turned bright red, like a bad sunburn. It was the same feeling as a bad sunburn, and the skin even peeled when it went away. The best they can figure is that having a temperature triggered the radiation recall. They're not really sure. But it only hurt for a couple of days, which beats the daylights out of the way it was burnt DURING radiation.

I've gotten most of my mobility back, though stairs are not really my strong point. Oh well.

I enjoyed a great Christmas, Birthday, and New Years. Much better than last year, when I was in the hospital with radiation and chemo! Now if only we'd have one really good snow storm, everything would be perfect.

I've changed this page so there are no pop-up ads. Unfortunately, that means there are ads at the top of everypage now. But better than having windows opening everywhere!

Take Care!

Tuesday, October 3, 2000, 9:22 AM(EDT)

Today I'm headed back to Mass General for a Cat Scan and two Dr.'s appointments. I have to see the Dr's to find out what other tests need to be scheduled, so I'll probably spend my next day off at Mass General too. Anyway, I'm nervous about the results, but I'm in a good mood anyway.

I've been keeping myself busy the last few days so I wouldn't have a chance to think about it. Sunday we all went to King Richards Faire. That was fun- I'd never been before. We got to see "Golden Tabby Tiger" cubs there and I looked it up- there are only about 30 of these rare tigers on the entire planet. All of them have been bred in captivity, they have not existed in the wild for many years. Yesterday was a busy day, I'm now watching Corey for a while on Mondays. He's been very good for me. In keeping with my good mood, I'm going to post something here that I think is hysterical. You may have already read these, but they still give me a laugh.

Accidental Accident Reports

The following quotes taken from the Toronto News on July 26, 1977, are actual statements from insurance forms where car drivers tried to summarize accident details in as few words as possible. Such instances of faulty writing serve to confirm that incompetency can be highly entertaining.

1. Coming home I drove into the wrong house and collided with a tree I don't have.
2. The other car collided with mine without giving warning of its intent.
3. I collided with a stationary truck coming the other way.
4. In my attempt to kill a fly, I drove into a telephone pole.
5. I had been shopping for plants all day and was on my way home. As I reached an intersection, a hedge sprang up, obscuring my vision and I did not see the other car.
6. I had been driving for forty years when I fell asleep at the wheel and had an accident.
7. I was on my way to the doctor with rear end trouble when my universal joint gave way causing me to have an accident.
8. My car was legally parked as it backed into the other vehicle.
9. As I approached the intersection a sign suddenly appeared in a place where no sign had ever appeared before, making me unable to avoid the accident.
10. I told the police I was not injured, but upon removing my hair, I found that I had a fractured skull.
11. I was sure the old fellow would never make it to the other side of the road when I struck him.
12. I saw a slow-moving, sad-faced old gentleman as he bounced off the hood of my car.
13. The indirect cause of the accident was a little guy in a small car with a big mouth.
14. I was thrown from my car as it left the road, and was later found in a ditch by some stray cows.
15. A pedestrian hit me and went under my car.
16. I thought my window was down, but I found out it was up when I put my head through it.
17. To avoid hitting the bumper of the car in front, I struck the pedestrian.
18. The guy was all over the road. I had to swerve a number of times before I hit him.
19. The pedestrian had no idea which way to run, so I ran over him.
20. An invisible car came out of nowhere, struck my car and vanished.
21. A truck backed through my windshield into my wife's face.
22. I pulled away from the side of the road, glanced at my mother-in-law, and headed over the embankment.

Tuesday, September 12, 2000, 9:47 PM(EDT)

On September 16th, it will be exactly one year since I found out that I had Sarcoma. In this past year, I've had 5 weeks of radiation, 35 days of chemo (Vincristine, Adriamycin, Cyclophosphomide, Ifosfomide, Mesna, Etopiside, and DTIC), 2 surgeries to my leg, 3 central ports installed and removed from my chest, countless tests (MRI's, CAT scans, X-rays, Blood draws, Bone Scans, EKG's, Ultrasounds, dye studies), I've been on countless prescriptions, and have spent 43 days inpatient at Mass General.

So you can well imagine my apprehension now that it is time for follow up scans. Logically, I know I need to do this and that if there is a reoccurrence, it's better to know about it as soon as possible. However, I'm having a hard time with making myself do this. But I will call tomorrow. Please don't let the scans show anything.

On a lighter note, I now have about a half inch of hair. Still haven't dyed it blonde. I no longer feel like I have to wear a hat EVERYWHERE. I have had to shave my legs and pluck my eyebrows. Ouch, didn't miss that...

Work continues to go well, and my class (computer applications) starts Thursday.

Everyone take care of themselves, and think "clear scans" for me.

Monday, August 21, 2000, 10:55am(EDT)

Wow. A whole month has gone by since I updated this page! I've been busy working, going out with friends, and even went on a vacation. Gotta love a job you can leave for 6 months, go back to for 2 weeks, and they let you take a vacation.

I've been working my regular full time schedule, and although I do still get tired, it has gone very well. All in all, it was a very smooth transition back to 'normal' life. I currently have about a half inch of hair, eyebrows (sparse), and short eyelashes. I'm more comfortable without my hat now, but I do still wear it when I go out. I can't wait until it's long enough to not have to wear a hat at all !

I just picked up a course catalog from Cape Cod Community College, and I'm going to take a class. Not sure yet, but maybe something in computer programming.

Congratulations to Andrea, who finished her last chemo! Visit her web page at http://dolann99.tripod.com.

Have a great day !

Wednesday, July 19th 2000, 8:56pm(EDT)

Back when I first started this last group of four chemos, a few people had made the comment that I should have a party when I was all done with the chemo. But I didn't give it much more thought, for one because it's hard to plan something like that when you don't know for sure when you'll actually be feeling better, and secondly, because I considered getting back to "normal" life to be such a great reward in itself. It might sound simple, but it really is the most basic things that I look forward to now.

Well, everyone threw a surprise party for me on Sunday. Lynda and Penny got me away from the house to run errands, and when we got back the backyard was decorated, and all my favorite people were there. Apparently, they'd been planning it since May. It was supposed to be a horrible day weather wise, but it turned out to be a beautiful, warm, sunny day. Lots of food, decorations, music, several full coolers, even a massive chocolate cake, and a great crowd of people. Everyone seemed to enjoy themselves. Absolutely perfect. Many thanks to everyone there. Let's do it again next weekend!

I'll be posting some pictures tomorrow, I warned you all you'd be on the internet!

Healthwise, I'm doing good. Still a little pain and stiffness in the leg, but it's much better than 2 months ago! Still have chemo burns where the port was, but it keeps getting smaller. I'm not constantly feeling tired all the time. Chemo ended exactly one month ago, and all the stomach effects are gone. Yeah!

Keep your fingers crossed, if all goes well, this time next week, I'll be at work!

Friday, July 14th 2000, 10:28am(EDT)

Yesterday was great. Lynda, my sister, and her 3 sons and I went to Boston to see the Tall Ships. It's the first time in almost a year that I went to Boston for something other than medical treatment. They aren't allowing cars anywhere near the piers, so we took the subway and then a shuttle bus. At the pier, we walked and walked and walked. Everyone had a good time, and my leg held up okay. I was thinking of all the walking yesterday as a good way to judge if I have enough energy to go back to work, and now I feel much more confident that I'm ready.

While we were walking around looking at the ships with thousands of other people, I found myself looking for other chemo-bald people. I wore a baseball hat, so I didn't feel obvious, but you can still tell I'm bald. I was thinking about how I didn't see one other person who was chemo-bald, and feeling kind of sorry for myself when we decided to get some lunch. There was a girl, probably a few years younger than me working at one of the booths, and while we were ordering, I realized she was staring at me. I didn't think anything of it, quite a few people had been staring at me (where are their manners?). When we got up to order, she pointed to her long hair in a ponytail, and said 'this is 3 years after chemo. don't worry, it grows back.'. Isn't that weird? Anyway, I felt better after that.

Regarding the hair thing- I went to buy a magazine the other day and walked away empty handed. It seemed like every single magazine had plastered on the cover 'new hairstyles', 'finding the perfect haircolor', or something like that. Is is me? Do I just find this more noticeable? I want to wear scrunchies and buy little barrettes and use hair gel in the worst way! Instead, I will just wear a different hat. I know it's not really important, I'm much better off than many people, I just can't stop thinking about it!

Wednesday, July 12th 2000, 9:03pm(EDT)

I've been feeling better, and able to do more, so I haven't updated this site as often. Of course, that's good news. More good news: tentative date to return to work is July 24th ! Pending approval by my Dr, of course. I can't wait. There are a lot of things I've learned from this experience, one of them being how to live on very little money. Speaking of which, many thanks to my friend Rich, he gave me an 8 gig hard drive for my computer, and even copied my old files onto it. My old hard drive was on the verge of biting the dust, a few times while trying to open programs or save files, I got the blue screen with a message of 'insert drive c'. C of course is my hard drive... so, the new one is working great! Lots more space too!

Tomorrow, Lynda, the kids and I are going to Boston to see the tall ships. The boys are excited about seeing the 'big' ships, but they are equally excited about riding the subway. Adults should be so easy to entertain. By the way, you can see pictures of them, my nephews, on the photos page. I will take some more tomorrow in Boston. Maybe I'll even get someone to take a picture of me and post it. I've refrained from posting a picture of myself *gasp* bald, but I'm pretty comfortable with being bald now.

Not that I don't want hair again. I can't wait! I was playing around with 'Cosmopolitan Virtual Makeover' on my computer today. You get to put different hairstyles on yourself. Nuff said.

Since my diagnosis and subsequent treatment, I've had a few people say that if they were diagnosed with cancer, they didn't know if they could go through the treatment. They also tell me how 'strong' I am. For some reason, people think that if they were given the diagnosis of cancer, they'd turn into quivering puddles on the floor. They wouldn't. They'd find the strength to keep themselves together. Once diagnosed, I had no problem accepting that I needed chemo, radiation, and surgery. If the Dr's had told me getting hit by a bus would have increased my chances of survival, I'd have happily stepped out in front of one.

Since the end of chemo, I've been getting this nagging feeling that maybe I should have more chemo. Isn't that sick? I had the amount of all the different drugs the protocol for my type of cancer (Liposarcoma) calls for, plus a few of the drugs it didn't (due to being first diagnosed with Ewing's Sarcoma). So why do I feel that way? I suppose it's because during chemo, I was focused on just getting through each day, and waiting for the end of chemo. Now that it is actually over with, I have to face getting my life back together. Which is scary. Not as scary as cancer, though. I just keep focusing on the idea that life is a journey, not a destination, and that enjoying the trip is just as important, if not more important, than where you wind up. Don't get me wrong, I do have goals, I think it's important for everyone to have goals, but getting there is at least half the fun.

Wednesday, July 5th 2000, 10:58am(EDT)

The fact that I'm done with chemo just hit me today. If I were still doing chemo, I'd be going into the hospital tomorrow for a 5 day inpatient stay. And today, I'd be going for blood work at Falmouth Hospital, packing a bag, and running errands. And of course, worrying and dreading chemo.

Instead, I'm sitting out in the backyard, going for a swim in the pool, enjoying the smell of fresh-mown grass, watering my plants, and planning a girls night out with Lynda.

There is so much to be thankful for.

Tuesday, July 4th 2000, 10:03pm(EDT)

Happy 4th of July!

It's been a few days since I've updated, because I'm feeling better and getting out more. Sunday, had lobster and watched movies at Rich & Karen's. The lobster was soooo good, and lots of it. We decided we need to eat lobster more often!

Today, I spent some time with my co-workers, it was great to see everyone. I can't wait to go back to work! In the afternoon, we had a cookout here, all the family, lots of food and good music. A perfect day.

Healthwise, I'm doing very well. Still a small sore on one side of my mouth, but it hardly bothers me anymore. Still on antibiotics as a precaution. The port sites haven't healed yet, but they have come a long way. The chemo burn still bothers me sometimes, especially at night, but putting ice on it generally alleviates any pain. I still get tired easily, I have to keep stopping and resting frequently, but that's so much easier to deal with now that I am feeling well otherwise. When I feel crappy, the tiredness is like the straw that broke the camel's back, but when I feel better, it just seems like a minor inconvenience.

I hope everyone is going to enjoy their summer as much as me!

Friday, June 30,2000, 9:52am(EDT)

The mouth sores are almost gone! It's just one side of my mouth now, and much milder. The mouthwash can numb it enough that I can actually forget about them. Lynda and the kids left for their road trip today, they're going to NJ to meet up with my cousin, and I think Robin is meeting them, they're all going to a carnival. I was supposed to go, but there's no way. I'm still much too tired to be able to get around an amusement park. I still have to rest after taking a shower. I keep telling myself that I'll be much better by this time next week.

My mood is pretty good, other than getting a little sad at times over what I can't do, but I think that's to be expected. I do worry about my leg, it's still not very strong, and I still walk funny, I just hope that eventually I will have as much mobility as I did. I've been told that I won't be able to run (oh, darn, and I was going to enter that marathon, haha), I just want to be able to get around normally.

Looking forward to going back to work in a big major way. Funny, Social Security has deemed me to be "disabled" until May of 2001, and some people have said I should just take it easy and collect. They don't understand that the one thing I need is to be productive again. I've spent far too much time being sick, I don't think I'll ever fell completely "well" if I'm not working. Hopefully by the second or third week in July, I'll be back to work. I know it won't be easy at first, but I have to do it!

I almost forgot to add - my good news - I'm definitely getting eyebrow and hair stubble! (no eyelashes yet though) I thought it was too early. When I stopped chemo for my surgery and recovery, it took about two months to get hair, eyelash, and eyebrow stubble. I can't believe it's started to come back this quickly!

Wednesday, June 28,2000, 11:13am(EDT)

Still have mouth sores, still feel yuck. But I was thinking, that usually by the time I go for another round of chemo, I usually feel better. So I'm hoping that by this time next week, I'll feel better. And I won't have to go for more chemo, hehe. The mouth sores are a pain, it's more annoying than anything, because you just can't forget about them. I got a prescription mouth wash that came recommended to me (thank you, Andrea), and that does help. I've also been eating snow cones and popcicles and stuff. Bet I'm the only adult out here waiting for the ice cream man.

Despite all this, I think my mood is improving. I can't wait to do fun stuff this summer. I'm just not quite ready for it. In the meantime, I can find something each day to enjoy, and of course, I have Princess to keep me company.

Tuesday, June 27,2000, 10:03am(EDT)

Still have mouth sores. I'm drinking lots of water, and I've temporarily retired my beloved diet Pepsi. I was sitting outside with Lynda yesterday, and I happened to notice that she has really good veins in her arms. I am actually jealous of this. I should have used her as a stunt double for chemo. I can't believe I'm actually at a point where I would even notice something like this.

Monday, June 26, 2000, 10:11am(EDT)

Okay, here's what I get for complaining. I now have a brand-new side effect from my last round of chemo. Mouth sores. Kind of like a mouth full of canker sores. I hope this doesn't last too long. I want to feel better, I want to have lobster!

Sunday, June 25, 2000 at 10:35am(EDT)

Tomorrow will be one week from the last day of my last chemo. So how do I feel? Like crap. I don't know what I expected. I didn't expect that I would recover instantly just because it was the last chemo. I guess I expected to be so psyched that it was my last chemo, that I would have extra energy and bounce back quicker from this last round. That hasn't happened. I still have no energy whatsoever. I had to rest after taking a shower ! I went to the store today, and it completely wore me out. I pretty much just sat in a chair the rest of the day.

Don't get me wrong- I'm still very grateful it's over, I'd just like to feel better. To be my old self. And I know it's going to take a few months for my hair to grow back, but some eyebrows and eyelashes would be nice in the meantime. I guess that because it was my last chemo, I felt like I wouldn't feel sick anymore, but I do. Does that make any sense?

Someone asked me if I was afraid of the cancer coming back. I know it's recurrent, but in the same way I "knew" when this all started that it was cancer, and not just a benign lump, I feel like I "know" I am done with this. I hope my instinct isn't wrong. If I did have to deal with it again, I know that I could. The only thing that scares me is thinking about how I got this rare form of cancer, that it's not rare enough, and that others will have this. I don't want anyone to ever have to go through this. And yet, people will continue to be diagnosed with sarcoma. So it is never really over.

Thursday, June 22, 2000 at 7:52am(EDT)

The last four rounds of chemo have been worse and worse on my stomach. Not even the zofran helped on Tuesday. So I'm surprised that yesterday, I ate a lot (relatively speaking- basically I had 3 small meals), and don't seem to be suffering any ill effects from it. Knock wood. Last night, I cleaned out my "hospital bag", the black leather bag I used for all my stuff for hospital stays. It was sort of strange, because there was a lot of stuff in it that I had just gotten used to leaving in the bag (like my little picture of my cat and my witch doll- don't ask...). It's not really setting in yet, that I don't have any more hospital stays (hopefully) in my immediate future. It all seems very odd, but I like it.

I also changed the bandages on the two port sites yesterday, getting those massive sheets of tegraderm off were a huge relief, now it's just gauze and tape. I actually slept on my side last night! I can't even begin to describe what a thrill that was, to finally be able to get comfortable to sleep. I will never get over how many little things like this I took for granted before.

I am taking down my "chemo countdown" ! Wow, never thought I'd get to say that.

Monday, June 19, 2000 at 7:51pm(EDT)

Well, I can't believe it, but chemo is finally over. I wasn't going to update my page tonight, but it'll take me a few days to get through my e-mails (184 of them! I feel so wanted!), so I thought I'd do a quick update here. Chemo went very smooth, nothing at all unusual about this round. Except that it was the last one! Finished up this morning at about 10:30, and then had both ports out from around 1-3:00. Nan was at the hospital to bring me home shortly after the ports were out. Oh, and they did let me keep them, I have them in a baggie around here somewhere... I am tired, my stomach feels a little funny (must have been those clowns I ate...), but mostly I am GLAD GLAD GLAD to be home and to be done with chemo. I never thought I'd finish. It's definitely the hardest thing I've ever had to do. Knowing how it would make me feel, and yet going each time for more. And now it is over. My countdown is at zero, and I have so much to look forward to! Thanks to everyone for all the support I've gotten, right now I need to sleep.

Thursday, June 15, 2000 at 12:11pm(EDT)

Look at that countdown winding down!

I had to go to Falmouth hospital to have blood drawn today, even though the nurse is here 3 times a week, and she can draw blood out of the external port, they deemed it necessary for me to go to Falmouth hospital and have them draw blood from a needle in my arm. I guess they didn't want me missing out on any of the "fun", this being my last chemo and all. Lynda went with me, and we were trying to think of how many times I have had needles stuck (IV's, blood drawn, etc) in me since this started. We couldn't even begin to count. It's well over a hundred anyway. I'm such a difficult person for them to find veins anyway, it's not uncommon for them to have to stick me several times. The record was when I went for an MRI, and they had to inject this contrast stuff. It was at one of MGH's "satellites", so there wasn't an IV nurse around. They stuck me 8 times before starting an IV in my foot. Anyway, that's enough of the gory details. Today's blood draw went fine, got it on the first try.

Lynda and I stopped at CVS on the way home, I needed anti-biotic cream and Tylenol. Yep, this is my life. So Lynda and I were looking at the hair color (yes, I know, but I will have hair again!), and she picks up this really pretty red-blond shade, and says to me, "you know, it never REALLY comes out this color". Just then, this guy was walking past us, and he heard Lynda's comment, and says , "I know, look what it did to my hair", and he takes off his baseball hat and he has grey hair. Lynda and I laugh, and I take of my baseball hat for a second and say "look what it did to mine!" and we all laugh, and Lynda says, "Don't buy that brand!", and he goes about doing his shopping, and we going about doing our shopping. It was nice, I didn't feel the least self conscious after that. It really helps to be able to laugh about it now and then.

I didn't sleep very well last night. As much as I am glad to get the last chemo over with, I still dread it. I've been concentrating so much on when it will be over that I didn't think about how I still have to go through it. It's so strange. I never had any pain from my cancer. I never had any symptoms. Just a lump on my leg that didn't bother me at all. The only painful part of it all has been my treatment. I read a book called "Autobiography of a Face", about a girl with Ewing's Sarcoma in her jaw. As an adult now, she makes the statement that "to really suffer from pain, you have to fear it, dread it, and repeat it". Well, I can say I know exactly what she means. I feel for anyone who has this disease, both because they have it, and because of the treatment they will have to endure. First you find out you have this life threatening disease, and then you go through this horrific treatment. It's difficult sometimes to be able to believe that the typical chemo, radiation, and surgery could be good for you at all, never mind to believe that it could be a cure.

I realize that medical science is a long way off from finding a real cure for cancer, despite what you read in the National Enquirer. There are new chemo drugs, new surgical methods, safer radiation, etc. I know there is new research all the time. I just wish that a tiny amount of that research would be spent trying to find ways to make our treatment more "humane". It's difficult to suffer through, and it's equally difficult to watch others suffer through. There's just got to be a better way.

Tuesday, June 13, 2000 at 8:19pm(EDT)

Normally, when I add a new update, I move the old update to the Journal page. That's where you can find all my old updates, from when this page first started. But I kind of like leaving a few of the updates on this main page, that way, if it's just a short, quick update, there's still plenty to read. Plus, it looks better. *L*

Right now, I have a low grade fever, running at about 99.8 degrees. This better not interfere with my last chemo!

When I have the ports taken out Monday, I'm going to ask if I can keep them. Everyone knows how much trouble the ports have given me, and I'm trying to think of what I can do with them. So far, the options are:

  • Burn them
  • Glue feathers on them and make cat toys
  • Scan them and put the pictures on my web page (no, I did not think of that one)
  • Bury them
  • Smash them into smithereens with a sledge hammer

Any other suggestions? Leave your comments in the guestbook!

Monday, June 12, 2000 at 12:22pm(EDT)

Okay!!! Talked to Dr. Harmon's office (by the way, he has a web page), and this is in fact my last chemo, and they will take out both ports!!! Since they can't do the port-removal surgery on the weekends, I am going in on Friday, finishing chemo on Monday, and having both ports out on Monday. I am so excited. My last round of scans were clear, So by late Monday afternoon, I'll be cancer-free, chemo-free, and port-free !! Everyone celebrate! I'm going to get a bottle of alcohol-free champagne for the ride home ! I've adjusted my chemo countdown to show Monday as the last day, can't wait to see that number wind down to "0" !!!!!!!!!!!!!!! Snoopy Dance !!!!!!!

Sunday, June 11, 2000 at 5:45pm(EDT)

It's not exactly summer weather here, it's actually fairly cold. But my family does have one of those backyard tents, and an outdoor fireplace, so I'm going to go spend some time outside with my parents, my sis, her husband and their three kids. So, for the first time, I'm going to have a guest writer in my journal.

As everyone knows, cats are very intelligent, and left to their own devices and given some free time with a computer, they can become quite computer literate. Such is the case with my cat, Princess. So I'm going to leave my computer turned on, and I've instructed her that she's in charge of updating the page today.

In September, I became concerned about my Mom, Cyndy. She began talking a lot about Dr's and the hospital. A few times she cried, getting my fur all soggy. Normally, I hate water, but I didn't mind this because it seemed to make her feel better.

Then, beginning in October, she talked a lot about "chemo". She would go away to the hospital for a few days, and when she came back, she would have really awful hairballs. Soon I realized what was causing this- she was shedding excessively, and lost all the fur on her head. When I shed excessively, I know it's from stress, so I spent a lot of time curled up with her, purring, to make her feel better.

In January, she stopped going to that place she calls "work", every day and started spending even more time with me. Then there were bandages and these wooden things she called "crutches". Boy, did I learn to stay out of the way of those evil things fast.

Lately, there has been a lot of talk about finishing "chemo". This makes Cyndy happy and excited. She talks about celebrating, and I believe I heard the word Lobster... my favorite food! I think she will be better soon, and I'm glad about that, but I'll miss her when she starts going back to that "work" place every day again. At least I'll have the computer to amuse myself. Here's a few tips for any of my feline friends who may also have a sick human.

Caring for a Sick Human

  • Humans may need to be reminded to take their medicine. Remind them by batting prescription bottles (the orange ones) off the dresser.

  • Sick humans eat soup, so keep your mice to yourself. Being cute and playful may get you a bowl of soup, one of my favorite foods.

  • Sick humans tend to sleep a lot, encourage this by curling up with them and sleeping a lot yourself.

  • If your human has hairballs, and keeps a bucket or bowl beside the bed, DO NOT lay in this bucket or bowl, trust me on this one.

  • Being playful is good, because this makes humans laugh, and laughing is good for them. But don't play ON them if they are sick, especially if there are bandages.

I hope you liked my update today, I'm always glad to do anything to help my Mom out. I'd tell you to e-mail me, but my my e-mail privileges have been revoked due to obsessive e-mails sent to Morris. But you can leave your comments in the guestbook, and I'll be sure to read them.

Princess

Friday, June 9, 2000 at 10:46am(EDT)

This morning, I was in the shower when the home nurse arrived. You see, If I want to shower, I have to cover the port with plastic wrap and tape, and I can only do it if she will be here to change the dressing in case it gets wet. Otherwise, I have to settle for a really careful bath. Anyway, after I got out of the shower, she had the herapin, saline, syringes, stuff to draw blood all set. And she told me that taking a warm shower would help the port work, as taking a warm/hot shower slightly increases your body temperature for a little bit, which can make the blood flow easier. And sure enough, she was able to draw blood on the first try! No problems flushing it, or anything! So port #3 is operational, if it doesn't work in the hospital, I'll just take a long shower! I am greatly relieved that there isn't anything wrong with the port. I don't know how they'd get the last chemo in me if it didn't co-operate!

Thursday, June 9, 2000 at 12:40am(EDT)

Unable to sleep, I've decided to add another entry to my journal. Because of the external port, the only comfortable position to sleep in is on my back, and I have a hard time falling asleep. I decided to offer a little practical advice to anyone who may be starting out on their own cancer experience.

First of all, know that you can beat this. And don't pay too much attention to statistics. Since all the statistics refer to 5 year survival rates, that means they are talking about people who went through treatment at least five years ago, and treatment is improving all the time. Plus, finding a good Dr. who's a specialist in your type of cancer greatly increases your chances for a successful outcome. Don't waste time with a general oncologist. Find the best specialist you can. I live on Cape Cod, and there are plenty of oncologists here, but I go to a Sarcoma specialist (called an orthopedic oncologist) at Mass General (Dr. Mankin - a very well respected Dr.). Even my chemo Dr. (Dr. Harmon, I highly recommend him, he even has a sense of humor) is a specialist in Sarcomas.

So, that said, if you are facing the prospect of chemo, let me offer some advice about veins and ports and stuff, goodness knows I have enough experience with those!

Ports

Basically, there are four methods of delivery for chemo. At least four that I know of... I think if there were any others, they would have tried them on me, since I seem to be jinxed in this area. One is regular IV to your veins, usually in the arm, though I had one placed in my foot once because they couldn't start one in my arm. The second is an internal port. This type of port is inserted surgically, usually to your chest. It consists of a single or double port, which you will be able to feel just under the skin, though you probably won't be able to see it. It has a tube, also under the skin, going to a major vein, usually in your chest or neck. This is accessed by inserting needles through the skin and into the port. The third is an external port, usually placed on the chest. It consists of a tube connected to a major vein in your chest or neck, which comes up out of the skin, and has 1,2, or 3 tubes connected to it which hook up to the IV. Accessing it is a matter of attaching the tube to the IV, no needles required. The third type is a picc line, which stands for "peripherally inserted central catheter". This is installed by inserting a large needle into the crook of your arm and feeding a tube through the needle into the vein. The tube is inserted all the way up your arm, through your shoulder, and into a vein in your chest. It's accessed by connecting the IV to a part of the tube that sticks out of the crook of your arm where they inserted it. I didn't actually have this type of port, they tried to insert it, but it wouldn't work. Here are the pros and cons of each type.


Veins- Generally, using the veins in one's arms would be best for people who's veins are easily accessed, and have chemo that lasts 24 hours or less. Not practical for those who have difficult to access veins and those who have multi-day (most of mine have been 4-5 days) chemo.

Pros
  • No surgery required
  • Nothing foreign in your body
  • Generally not painful once accessed
  • No maintenance required
Cons
  • Hard to access on some people
  • Can experience thrombophlebitis because of irritation caused by chemo drugs
  • May require repeated needle sticks to access in some people
  • Can cause a lot of vein damage, especially for people who have chemo that spans several days in a row
  • Chemo can leak outside of the vein, under and over the skin, causing painful chemical burns and scarring.


Internal Port- If your veins are difficult to access, you're active, your chemo spans several days, and you don't want to bother with maintenance, an internal port may be the best choice.
Pros
  • You can still swim and shower without any restrictions
  • No maintenance required on your part. Nurses will flush it after accessing it.
  • Generally not painful after being inserted
Cons
  • Accessed with needles, which can be painful
  • Chemo can leak under and over the skin, causing painful chemical burns and scarring- may require skin grafts to correct in extreme cases.
  • Requires surgery to insert, scar is approximately 2 1/2 inches long
  • Can stop functioning due to a variety of factors (blood clot, placement, etc.)

External Port- If you can't stand being stuck with a needle, you don't mind the maintenance, and you don't want to risk chemical burns from the chemo, an external port may be the way to go.
Pros
  • Completely painless to access- no needles
  • Very small scar, less than the size of a dime
  • Generally considered more reliable than an internal port
Cons
  • Cannot get it wet. No swimming, can be covered with plastic wrap and tape to shower.
  • Can be extremely uncomfortable
  • Very high maintenance I have to have a visiting nurse change the dressing on it and flush it 3 times a week. If I were going to have it long term, they could teach me to do this myself
  • Because it's external, I have to wear big baggy tops, or you can see the outline of it.
  • Requires surgery to insert.

Picc Line- For short term chemo, and no scars, a picc line may be best.
Pros
  • Can be inserted by a nurse- doesn't require actual surgery
  • Does not leave a scar
  • Generally not painful once inserted
  • Painless to access- no needles
Cons
  • The procedure to insert is done without any pain medications or anesthesia (don't ask me why). Not a pleasant experience.
  • Can't get it wet
  • Some maintenance, such as changing dressing and flushing it, though you can be taught to do this yourself
  • Can be uncomfortable
  • May be unable to insert it if veins are already damaged from chemo.

If your chemo is short term, and each session is less than a day, I'd recommend using your own veins. If your chemo is long term, or spans several days, I'd recommend the internal port. Why? Well, I've had a problem with chemo burns with both of my internal ports, but my Dr's tell me this is unusual. I find the external port to be much to uncomfortable to have for long term use, though I think the maintenance isn't a problem once you get used to it. As for the picc line, I had them try to insert one, but it didn't work, so I actually haven't had one. But I do know that I could never tolerate the procedure to insert it again. If I could get them to sedate me for the procedure, I would consider a picc line. When they say that once the needle is in, that you won't be able to feel the tube going in, they're lying. Or there's something wrong with me, because I could really feel it, and it wasn't my imagination, as there was a bruise shaped like a line going up my arm where the tube went. I'd actually prefer to have the surgery to insert an internal or external port, and I don't like surgery.

The external and internal ports are generally inserted by a radiologist, and they give you shots of lidocaine to numb the area. You can still feel quite a bit of the pushing though, so if you can talk the Dr's into sedating you, I would highly recommend it.

In addition, for anything that involves needle sticks, there is a wonderful product called "emla cream". Ask your Dr. to write you a prescription for it. At least an hour before you're going to have a needle stick, say into an internal port, you put the cream over it, and cover it with tegraderm. When it's time for the needle stick, they wipe the cream off, and your skin is totally numb under it, from my experience, for about 3 hours. I used to find accessing the internal port painful, but with Emla cream, it is completely painless! If you have to make a decision concerning ports, I hope this has been of some help to you. Talk it over with your Dr's, they can usually provide you with more information about each type.

Thursday, June 8, 2000 at 1:52pm(EDT)

So how do you like the new graphics? Since I can't get out much, I've got lots of time in front of my computer, so I made new graphics for my web page.

I am waiting to hear back (by e-mail) from my chemo Dr.'s office, I was telling them I want to leave the hospital port-free after my last chemo, and wondered if it would be better to do Friday to Monday rather than Thursday to Sunday. I don't care, as long as I get these ports out! Funny, I'm just as excited about getting rid of the ports as I am about ending chemo.

I can't wait to have hair again. I look at myself in the mirror, and I honestly forget what my hair looked like. I can't even picture it anymore. Just think, someday in the future, I'll be looking in the mirror, and not be able to remember what I looked like bald. If I've learned anything through all of this, it's to not take anything for granted. After a while, I'm sure I'll think less and less of this whole experience, I'll probably eventually go through a whole day where I don't think of the word "cancer" even once. But I hope that I always remember to not take anything for granted.

It's definitely summer here now- it looks like the whole world turned green. I'm looking forward to swimming, going to work, and going out with my friends this summer. I know, all very ordinary stuff, but it's the everyday things I miss the most.

Wednesday, June 7, 2000 at 11:52aM(EDT)

No one is going to believe this... The nurse was here today, and one of the things she was supposed to do was draw blood... so she went to draw blood out of my port, the new external port, AND IT WOULDN'T WORK !!!! Couldn't flush it, yada yada, just like the other two before it. She is due back on Friday, at which time she will try again. This is not happening.

Last night, I posted some more pictures to the Photos page, please be sure to take a look.

Tuesday, June 6, 2000 at 4:24PM(EDT)

What a difference a few days makes. I went out last night, to Karen & Rich's. We had dinner and watched TV, a pretty quiet night, but it is so good to get out and do normal stuff. I'm getting pretty used to driving again! We were talking about fun stuff I could do to celebrate when chemo is all over. One thing I am very thankful for, despite all my complaining, is that the chemo protocol for Liposarcoma is shorter than Ewings sarcoma. If my diagnosis were still Ewing's/PNET, I would have 7 more chemos... you'd be listening (or reading) to me complain for another 21 weeks.

I was diagnosed at the end of September in 1999 with Ewing's/PNET, and the tumor was quite large. I know I had it for at least a year, probably much longer. I just never thought it could be anything serious. It never hurt, and I thought if it was anything serious it would be painful.

I had surgery on Feb 4th (anti-tumor day) to remove it after 5 rounds of chemo and 5 weeks of radiation. When they remove a tumor, they do a very thorough pathology report on it, which is much more accurate than they can do with the small tissue sample they take in a biopsy like I had. I had heard of people for whom the type of sarcoma changed after they "got a better look" of the tumor, but it really isn't common. In the time between my surgery and the results of the pathology report, I was telling everyone that my dream was that they would find it was actually a different kind of tumor and that I would need less chemo for it. Which is exactly what happened. I would have never chosen to have this disease to begin with, but I'm grateful for getting my wish.

I'm also grateful for the people I work with, they've promised to keep my job open until I'm ready to come back to work. I can't tell you how much this means to me, to have some kind of stability waiting for me at the end of this. I wouldn't be half as motivated to get back to "real" life if I didn't know where I'd be working. And now, "real" life is not that far away!

Check out my chemo countdown below, it will automatically keep track of the days I have to go until the end of my last treatment!



Thursday, June 1, 2000 at 11:55PM(EDT)

The last two days have been gradually better for me- I've almost lost the constant queasy feeling I have right after chemo, and though the ports are UNCOMFORTABLE (to say the least !), I guess I'm a little more used to them. The visiting nurse came on Wednesday to flush the port and change the dressing. Tomorrow, she will be here again, and said she could take out the stitches in my neck. The stitches actually holding the port in/on will stay until it's removed, but having the ones out in my neck should increase my comfort level a little bit.

I never thought I'd be 34 and have tubes hanging out of me and a home nurse coming three times a week to take care of me. It's funny that we go to horror movies and are scared by vampires and stuff, but the real horror is stuff like this.

I have my last chemo in two weeks, and I fully intend to leave the hospital with no hardware in me. I'm going to talk to my Dr. and have him work out the logistics. The usual scenario would be me going in on Thursday and getting out Sunday, but I'm not sure they would be able to remove the ports on a Sunday, so it is possible that they will change the day I go in. I prefer earlier, of course. I'm also going to ask my Dr. to have me put out for the operation to remove the two ports. The three times I've had ports put in, they were all done with just lidocaine, and I can't tell you how much I hate it. You can still REALLY feel when they are digging around inside you, and I can't imagine it's much fun for the Dr. either- with me squirming and going "ouch". Plus they are both near my neck, they put the oxygen thing in my nose, put a surgical mask on me, and then drape a sheet over my face as part of the surgical prep. They also velcro my arms to the side of the table. Laying there, not being able to see what they are doing, knowing I'm going to feel pain, and that I can't move away from it- it's just a feeling no one should have to endure. But if it comes down to it, and being put out means I have to stay overnight, thus another day, I'm not sure what I'll decide to do...

On a happier note, it was so nice out today- I spent the afternoon outside with my family, watching the kids and just hanging out. When it got dark out, we made a fire, and I actually had one beer. It felt so decadent! Not that I'm not supposed to drink, but normally this short after getting out of chemo my stomach is still doing flip-flops. We were talking about how after my last chemo, when my stomach is up to it, we are going to get a bunch of lobsters, and I am going to positively gorge myself on lobster. I get a small amount of disability money from the state, like $328 per month, which is a joke, I would get more if I was just unemployed! but they also gave me food stamps as part of my benefit. So I'm going to save up my food stamps (I can't believe I'm admitting this...) for lobsters. Ha ha-- your tax dollars at work. I hope that doesn't offend anyone, I do think I deserve it.

I also got a new computer game- The Sims- which is hysterical. And I found some new Adobe PhotoShop filters to play with (new web page graphics, coming up!), and ordered a couple of books from Amazon.com, so I've got a little more to do than when I posted the other day. This generally makes me happier. So I'm in a much mellower mood than Tuesday, as you can see from the difference in posts.

I'm going to post some new pictures on the photos page, be sure to check them out, and thanks to everyone for e-mails after my post on Tuesday.



Tuesday, May 30, 2000 at 9:03AM (EDT)

Okay, I now have two ports... I have the non-functional under the skin one on the right, which is still really burnt but doing a little better, it itches like crazy. And I now have the hanging outside of me kind on the left. I can't believe people actually have this kind in for a year! First of all, it is, quite literally, a tube stitched into my jugular vein, that then comes up out of the skin and has these two 6 inch long tubes hanging off of it that they hook the IV up to. It is held in place by this thing shaped like a handle over where it comes out of the skin. The handle has stitches in it to hold it onto me. Yeah, I know, this is really gross, but you only have to read about, I get to suffer it.

It is so uncomfortable with the two ports, I feel like I'm going to loose my mind. I just keep thinking-- only one more chemo. I just really hope so... I can see them changing their minds at the last minute, "oh, we'll do another few rounds", like some kind of sick joke. Can you tell that this is all starting to wear on me? I'm sick of being positive, I'm sick of being tired, I'm sick of being in pain, and I'm sick of being sick. I'm sick of the whole #*&$ thing and I just want it all to be over with. I want to have a normal day, I want to go to work. I want to have a day where I can actually complain that the day has gone by too fast. That hasn't happened in a while, they all just drag on, and there's nothing to do but get through it.

Sorry to be venting so much, but I had to do it. If you've gotten this far, please sign the guestbook- I moved over all the entries from caring bridge, so feel free to read it too.



Wednesday, May 24, 2000 at 2:25 AM (EDT)

Back from chemo! Sorry I didn't have any updates while I was in the hospital, but I had a problem with internet explorer. Oh well. So, let me fill you in on what you missed... they tried to put a picc line in my arm, which didn't work because all the veins in my arms are too damaged by chemo. Also, and I did not find this out until they actually started the procedure, I thought a picc line was like an IV to a deeper vein in my arm. What it actually is, they thread a tube into a vein in your arm, and keep feeding it in... all the way to your chest. So they couldn't get the picc line in, and since I now know it would have gone into my chest anyway, I now have a new double external port in my chest. The old (chemo burnt one), is still there too, if you're keeping track.



Wednesday, May 24, 2000 at 12:25 PM (CDT)

Just when I'm starting to feel better.... back for 5 more fun-filled days of inpatient chemo tomorrow. At least I'm getting around a lot better these days. I had dinner and watched movies at Rich and Karen's on Monday, it was so good to be out doing something social. Today, went to Falmouth hospital to have the standard pre-chemo blood testing, a few other errands, and grocery shopping. I am really getting around lately- it feels so good. I almost feel like a normal person sometimes!
I feel so relatively good (only port pain now !), I hate to go into the hospital again. Just thinking about chemo nauseates me. I know I only have 2 more rounds left, and I just have to keep thinking the sooner I get started, the sooner I get finished. I want it to be all over now!
As far as the port goes, most likely they will be putting a picc line in my arm and leaving it in for the next two chemos. They will decide if they want to take the port out while I am in the hospital this time or whether to wait until I'm in for the next chemo. All depends on if they think it's too irritated to fool around with. And if they think I need a skin graft... argh. I think it is improving, I don't think they'll have to do a skin graft. I hope they agree with me!
If anyone wants to check out the new site I started, the address is: http://nucc.tripod.com



Sunday, May 21, 2000 at 10:12 AM (CDT)

Yesterday was a good day! I went for a visit to the place I used to work, it was good to see everyone! I am hoping to get back to work in July, after chemo is done. I can't wait! The last day I worked was January 9th. My surgery was on Feb 4th, and I foolishly thought I would be back to work in a month. haha. I can get around much better now, I don't even use the crutches around the house anymore, but I've still got a while before I can get around well enough to work.
I work for The May Institute, a residential service for mentally and/or physically challenged adults. You can see their website at: http://www.mayinstitute.org/.
Many thanks to my co-workers for their help in keeping my job opening, it is great to know that when I am ready, I will be able to go back to my old job!
I also went to the bookstore yesterday, and bought a great book on using PhotoShop. I'm in the process of moving all the information to another web site on Tripod. This service is great, but I am limited in what backgrounds and graphics I can use, and I want to make my own! If you'd like to take a look at the Tripod site, which has all the stuff here, and more, it's http://nucc.tripod.com.
Someone asked why I picked the name "nucc" for the site. That's my nickname. It goes back to a long time ago- my friend Rich believes there are 2 kinds of people in the world... those who are Italian, and those who want to be Italian. So he used to call me "Fentonucci" as an honorary Italian. (My last name is Fenton) and somewhere along the line it got shortened to just "nucc", and much to my dismay, it stuck. Now I actually answer to it. I guess there's worse things people could call me. :)



Friday, May 19, 2000 at 01:34 PM (CDT)

This happened a while ago, but I was thinking about it today. I feel so old, hobbling around and putting ice packs on the port, thinking about this makes me feel better- at least I don't look as old as I feel.

I was waiting for a CT scan one day at Mass General, and it had already been a long wait- the whole process that day took about 4 hours. Anyway, I was finally changed into my hospital gown, no hat or wig or anything, and at the time I was completely bald, no eyelashes or eyebrows or anything. They stuck me 3 times trying to get an IV started, and I protested and demanded the IV nurse. So they made me sit in the corner and wait for the IV nurse.

While I was waiting, I got to talking to this nice older lady. She was telling me that she was going to Florida the next day to visit her children and grand children. So, she asked me "how I felt about getting cancer at a young age", and I replied that I thought having cancer at any age was devastating, but that I especially felt bad for young children who had it, that at least I was an adult. She then asked me if I was still in school since I started treatment. I must have looked at her funny, because she laughed and said to forgive her, but she couldn't tell if I was 13 or 25.

I then laughed, because as you all know, I am 34. We joked around about being bald makes you look younger (she was bald too), maybe more people should try it.

So, today I'm feeling like 134 and it's raining and dismal here, and thinking that someone could actually mistake me for 13 or even 25 makes me feel better. Stay our of the hot sun, haha.

PS- can't tell if my Mr. Ed medicine (the DMSO) is working. Will keep hoping!



Thursday, May 18, 2000 at 04:48 PM (CDT)

It's been a few days since I've updated, and my leg is doing better. Among other things, I cleaned out my car, played badminton with the kids, and I can hobble short distances without any crutches. The port is another story. The area over the port, about a 2x2 inch square, is still badly burnt. The skin is red, almost purple in texture, and you can tell by looking at it that it's deep. So, Dr. Harmon talked to me yesterday, and we need to find another way to put the chemo into me for the next two rounds. My options are limited, since they can't do anything with my chest, chemo burns on both sides now, so it looks like they will either put a picc line (plastic tube) into my arm which will stay there till I'm done with my last round, or they will take there chances with my already damaged veins. Either way, ouch. And then he tells me if the port site doesn't improve, they'll have to do a skin graft!!! And that they would naturally wait until I was done with chemo to do this!!! I was so looking forward to being done with chemo's and Dr's and hospitals, at least until my next rounds of scans were due in 3 months. I am very displeased with this news, to say the least.
He did tell me, that as a last ditch effort, I could try something called "DMSO" on the burn site and that some people have had success with this on chemo burn sites. He said it was sold in the 70's as an arthritis remedy, but didn't know where I'd be able to get it today. I called every drugstore and healthfood store in the area yesterday, and no one even heard of it.
So, I called Rich. He knows everything. And sure enough, Rich actually knew the chemical name of the stuff and that today it is mainly used on horses. So I call two horse vets, the second one has the stuff, and is willing to sell it to me. Lynda and I went to get it, and on my little horse prescription type bottle, it says "petcare" and "patient's name" and "owner's name". I kid you not. So Mr. Ed and I now get our medicine at the same place. Just when I thought there wasn't any indignity I hadn't already suffered.
Many thanks to Rich for always knowing the answer to everything. We need to get him on "Who wants to be a millionaire" !
Everybody cross your fingers that this stuff works, so I don't wind up with a skin graft.





Sunday, May 14, 2000 at 08:41 PM (CDT)

What a nice day we finally had here! I spent most of the day outside, with my family. It feels kind of strange, I'm just sitting there, and they're planting stuff and playing with the kids. Well soon enough I'll be able to do all that. I was actually walking around a little today with NO crutches. We spent the better part of the afternoon putting up the tent (not the kind you camp in, the backyard kind you sit under). Now I can sit outside without fear of burning (chemo makes you burn much easier). It's also nice to sit out under the tent when it's raining. Fresh air no matter what the weather is! Lynda and I decorated it with Christmas lights, and we were outside until it was dark out. I think I'll heal faster now that we have nice weather and there's stuff to do! At least I hope so!



Saturday, May 13, 2000 at 08:49 AM (CDT)

I thought I'd post a few links today.
First, here's a list of people with web pages about their experiences with sarcoma.


This is my friend Karen's web page, she's very creative. Under a Fae Moon

This is the best place to learn HTML.HTML Goodies

This is the website I made for my friend Rich's business.Culpeper Systems

Check out the online auctions at Ebay! You really can find ANYTHING there. And while you're at it, sign up on PayPal to pay for auctions online with a credit card.
Download free software at:


This picture is Snickers when he was a kitten. Isn't he adorable?




Friday, May 12, 2000 at 07:06 PM (CDT)

Hi, everyone, guess what I did today! I drove! Yup, first time since February 3rd, I got in my little Tercel and took a drive. Went to the bank, got some lunch and ate it at Horizon's beach. Took a drive through the marina on my way home. It was so great, it made me feel so NORMAL , just driving around and singing along with the radio! I don't think I'd be able to drive too long, It's still difficult for me to sit for any length of time, but just to drive around town was enough. Later, Lynda and I sat outside. We've been making some jewelry. Had pizza for dinner, no stomach problems! Today was a very good day. Not feeling the effects of chemo at all, aside from tiring out easily. I can't believe how good driving felt, it was even better than when I first got my license! If I don't post here as much the next couple of days, it's because I'm out DRIVING !!!!


Here's another picture. This is Squirrel, she belongs to my friends Rich and Karen.




Thursday, May 11, 2000 at 10:54 PM (CDT)

Today my port is much less sore, and I'm feeling the effects of my most recent chemo disappear, so I'm in a much better mood. My sister Lynda went to a concert in New Hampshire today, and I was at her house (she lives next door) for a while while she was getting ready. I was in the livingroom watching TV and playing with her cats when the phone rang, so I answered it. It was my other sister, Robin. At first she thought she called the wrong house, and we had a laugh over that. Then she asked me to look up the phone number of a hairdresser in our local phonebook. As I was sitting there looking it up and talking to her on the phone, I realized how ironic it was. I mean, me, bald one, looking for a hairdresser in the yellow pages. So, Robin and I joked around about that on the phone, and Lynda came out. Soon, we were in hysterics thinking of practical jokes we could play on hairdressers. For instance, I could make an appointment, wear my wig, show up, wait for my turn, and see what happened when they went to shampoo my wig, and see what they did when the whole thing fell off. Or, just wear a hat, and when they sit me down in the chair, whip the hat off, and say I wasn't really sure what I wanted to do, did they have any suggestions they thought would look good? And just wait to see what they said... ooohhh that would be so much fun. But I know I'd never be able to keep a strait face. I know, it's not nice to do that to people, this is strictly speculation. I really enjoyed laughing about it with my sisters. But seriously, I can't wait to have hair again. I forget what I look like with hair!

Here's another kitty picture, this is Snickers, Lynda's cat, in the baby's swing outside. Isn't he a character?




Thursday, May 11, 2000 at 10:50 PM (CDT)

1



Thursday, May 11, 2000 at 09:53 AM (CDT)

Just talked to Dr. Harmon's office, they will not do my chemo as outpatient. They said the chemo protocol I'm on, MAID (Mesna, Adriamicin, Ifosfomide, and DTIC) is always done as inpatient. It's very evil stuff, so they have to keep me under watch. Someone asked me about chemo, what the side effects were and stuff. Funny you should ask. They have some idea of the long term side effects, such as that adriamicin damages the heart (there is actually a limit as to how much of this chemical they will give you in a lifetime, so as not to damage your heart too much). The DTIC fairly often causes nerve damage, many people who have had treatment with it report tingling sensations in their hands and a loss of dexterity (problems writing and holding small objects, mainly). The Mesna is actually a protectant drug, not a treatment drug. It protects me from the effects of the Ifosfomide, which causes damage to the bladder. The way my chemo works, is I get four 24 hour doses (though they have speeded it up when I am doing well). The first three 24 hour doses consist of all four drugs. At the hospital, they mix the Adriamicin and DTIC in one bag, and the Ifosfomide and Mesna in another bag. These two IV bags get attached to me via 2 needles into my port, which is a plastic contraption under the skin just below my collar bone with a tube going to the jugular vein in my neck. The fourth set of chemo is the same, minus the ifosfomide. In addition to these IV drugs, I get a variety of pills, all supposed to help with nausea- zofran, atavan, and decadron. The zofran doesn't seem to me to have any side effects, it's my anti-nausea drug of choice. Atavan is actually a sedative, similar to valium, which just happens to have the added effect of reducing nausea. This is great at night, but unless I want to spend the day unconscious (and sometimes I do) and incoherent, atavan has to be used very sparingly. Decadron is actually a steroid that decreases nausea, increases appetite, and generally makes me the moodiest person who ever walked the planet. The nurses hold off on the decadron as much as possible, life is already interesting enough. As far as how the chemo makes me feel, sometimes when the anti-nausea drugs are working well, and I'm able to sleep (which is difficult for me in the hospital), I sometimes feel absolutely normal. At the times I feel the worst, compare it to the absolute worst flu you've ever had in your entire life, and imagine that you got food poisoning at the same time. This feeling usually lasts about 2-4 days after the treatment is done. That's chemo!
The way chemo works is it targets all fast multiplying cells in your body. Cancer cells divide quickly and out of control, so the chemo targets them and that's how it kills off tumors. (Ideally speaking of course, unfortunately, chemo doesn't always work. ) The problem is that a lot of healthy cells in your body divide rapidly also, and the chemo kills them too. Thus your hair falls out, my fingernails are like paper, my skin is so dry, and cuts don't really heal. It also does a job on the lining of your digestive system. These short term side effects do go away after the chemo is finished, so it's just a matter of enduring them for now!
About a week after the infusion, my blood counts take a major dive. White blood cells, red blood cells, and platelets are at a fraction of what a normal person's would be, and this leaves me with little immunity during this time. Luckily, my counts bounce back naturally very quickly. Many people on chemo have to give themselves nuprogin and procrit shots daily to help their blood counts bounce back. I am very appreciative that I do not have to endure this extra goodie. My sympathy to those who do. Especially to those who regularly wind up in the hospital between chemo's with fevers. I've been advised by my chemo Dr. that if my temperature gets to be over 100, to take myself to the emergency room and they will admit me. Luckily, I haven't had to be hospitalized between chemos at all.
So, there's the lesson on chemo for the day! Bet it's more than you ever wanted to know! I hope you never do have to know what it's like!


The cat pictures were a big hit, so here's another one:




Wednesday, May 10, 2000 at 10:53 AM (CDT)

One thing I'm really looking forward to is not being so conspicuous. Here I am, bald and on crutches, unfortunately, there's no blending with the crowd. I went into CVS yesterday to get some stuff, and you can see it register on people's faces - oh, she must have cancer. I know they don't mean any harm, and they can't help their reactions, I'm sure I did the same thing before I was diagnosed. But I'd really like to go somewhere and not be noticed! Part of it is the crutches, when people see them they automatically try to get out of my way. But then I see them notice the bald head, even though I'm wearing a baseball hat, and then they practically jump out of the way. I'm talking mothers yanking back their small children here. I know they are just trying to be helpful. But I want to hang a sign around my neck that says "My prognosis is good, so please don't look at me like that!". So, as a favor to me, if you see a chemo patient today, completely ignore them. That's what I'd want right now.
On the other hand, I've noticed there's a much different way cancer patients regard each other. When I'm in the hospital for chemo, the conversation always starts with something like, so, what are you here for? Who's your Dr? This reminds me of what I've seen in movies about prison. So, what are you in for? Who's your lawyer? I also find that we tend to joke amongst ourselves about cancer and it's treatment. I'm sure anyone who hasn't gone through this would be horrified at the things we laugh at- like serious drug side effects, loosing your hair... sometimes you really do have to laugh at the absurdity of it all. Anyway, that's one of the many reasons I really like the list serv I'm on. They have particular lists for just about every type of cancer, for caregivers, patients, and just those looking for information. The address is
www.acor.org.



Tuesday, May 09, 2000 at 07:47 PM (CDT)

Would you believe I waited 3 1/2 hours for the test on my port today? The test itself including prep was less than a half hour. The surgery team were really nice- very funny. I know that sounds minor, but it does help a lot if they can joke around and lighten things up a bit. Anyway, the Dr. (Radiologist) in charge numbed the port with lidocaine, that was the only painful part, then he accessed both sides of the port, drew blood, injected dye (which spread out exactly as it should), and flushed it. They found absolutely nothing wrong with the port! Which would normally be good news, but why couldn't the nurses access it on Saturday and Sunday? And why do I have chemo burns under/on my skin IF THE PORT IS OKAY? The Dr's theory is that the nurses tend to use the longest needle they think is necessary. They had been using 1 1/4 inch needles. He recommended using only 3/4 inch needles, and said that with the longer needles, part of the opening on the needle may be above the chamber of the port that is sealed- thus releasing fluid under the skin, and backing up around the needle and coming to the surface. I asked if he would be available to access the port next time I had chemo, and he actually said yes, no problem, have them call him if there's any problem and he'll come do it. He was serious! I may take him up on it. So this means no other medical procedures until 2 weeks from Thursday, at which time I'll go for a five day chemo. And after that.... only one more!!!!



Monday, May 08, 2000 at 07:14 PM (CDT)

I put up a couple of pictures today, on the photos page. See how cute my cat is!



Monday, May 08, 2000 at 04:07 PM (CDT)

I got home from the hospital on Sunday, but haven't felt like writing. The port I just had put in during the last chemo round malfunctioned, and the chemo leaked out of it, both under and over the skin. I'm sure this isn't exactly common knowledge, but the drugs they use for chemo are extremely caustic. So, where the drugs leaked I have a bad chemical burn. So, now the port has to come out, going to Mass General to see about that tomorrow. They aren't sure if they will wait for the burn to subside before they do surgery on it, but they may just take it out tomorrow. Which leaves me with 2 more rounds of chemo and no way to get it into me... I'm tempted to just take my chances with what veins I have left in my arms, but maybe I will just have a picc line put in (which is a tube going into a vein in my arm), and they can pull it out after the last chemo. I am going to be so relieved when all of this is over with. It's awful that so much of the treatment for this disease is torture! And now, this burn on my chest and neck, it hurts to turn my head. I just hope I can get through the last two rounds without any more problems.



Thursday, May 04, 2000 at 02:55 PM (CDT)

Well, here I am at Mass General, for chemo. After this, only 2 more rounds to go !



Tuesday, May 02, 2000 at 07:57 PM (CDT)

I've been thinking of setting up a page like this for a while now. I'm not exactly sure what to write with this first entry, but I suppose a little history is in order.
I was diagnosed in September of 1999 with Ewing's/PNET sarcoma. Sarcomas are a rare cancer of the soft tissue. I'll try to provide some links later on so anyone can learn more about it if they want.
So, I had 5 rounds of chemo and 5 weeks of radiation, and then surgery #1 on Feb. 4th. The pathology report on the tumor came back that it was "Liposarcoma", which is cancer of the fat cells. I had some problems with the incision healing, and then part of it opened up. Which led to surgery #2. Hopefully the last! I hate being in the hospital so much, it's hard to find words to describe it. I can't sleep, I don't feel like eating any of the food, all I can think about is getting outside and as far away from the hospital as possible. When I'm there for chemo, which is 5 days inpatient, I have the added fun of being drugged up. The chemo drugs, and the drugs they give me to ease the nausea , make me really spacey, and I get even more bored because I can't concentrate on anything. I can watch TV for an hour and not even be able to tell you what's on the screen in front of me.
Now that my diagnosis has changed, I have a new chemo protocol which is different drugs. I have 4 total treatments, one of which I've already completed, and the next starts Thursday. My last round of scans came back all clear, so it looks like these 3 more rounds of chemo and I will be done with treatment... that sounds soooo good... I'm almost afraid to say it for fear I'll jinx myself.
So, that's all the technical information about me, hopefully the next posts will be more entertaining. I'll have a computer with me in the hospital for my chemo that starts on Thursday, be sure to read those posts. I'll be in a drug induced haze, who knows what I'll type...



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