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Tattooed and Ported

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Hi = just posting to complain I got my port today and feel like I got shot in the shoulder. I was very irritable last night. Tried hard to be upbeat but I just confessed to everyone around me, especially my dear husband, "please forgive me as I know I am irritable." So I guess I am still a little irritable and tired. Also, when I got my tattoos and they cast my body I felt like a cadaver laying there so still so long. I could hear people laughing and talking in the other room and I was humming to myself "dooo, too dooo, tooo dooo tooo dddodoooo . . . does anyone remember I'm here?" But they showed up right after that. It's hard to remember that these people are at work and they get to talk and laugh and it's my problem if I am getting annoyed. But it is a little scary to think you are getting cold and haven't heard from anyone in a while especially when they told you to lay "absolutely still." Looks like I am going to be a complainer, huh! I get my first Pet Scan on Wednesday. I'm not dreading it or anything but I probably will complain about it here:-)

z's picture
z
Posts: 1250
Joined: May 2009

Hello, I'm glad your on your way to being cured. Complain all you want, I know I understand. Hopefully, as you recover from the port insertion and as your body gets used to it, you won't even know its there. I've had mine for a little over 2 years and sometimes feel it to see if its still there, as it doesn't hurt at all. The pet scan is the other just lay there scan. I wish you well. Lori

suzynanny
Posts: 36
Joined: Jun 2011

Complain all you want !! Glad you are on your way. I have had a miserable week. Sick sick and more sick. So glad that pump came off today made me real sick. After my radiation tonight at 7:15 I will be one week done. I have whined all week myself. Hopefully the chemo will not make you sick as it did me.

z's picture
z
Posts: 1250
Joined: May 2009

Hello, I was so happy to get the pump off the 1st week, just mentally. I had to take the nausea meds 1 time, but probably could have taken them more and should have. I know physically I started feeling better within a couple days. I wish us all well. Lori

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

I think you letting me know you got sick will keep me from feeling like a failure if I get sick. I always want to get out of everything the easy way. I guess that's just human but sometimes I am hard on myself when I need most of all to let myself off the hook. I am so proud you didn't rip the sucker off. I hope I have that courage myself. You are one week in - ahead of me. Keep sharing. You are helpful when you do. I don't know you and you haven't posted a picture but you are in my prayers. With a name like suzynanny you must be loved by a lot of good people.

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

I took my nausea med at the first sign of nausea and never got sick. My oncologist prescribed two different kinds. She said if the first one isn't working, take the second right away. The one she said to take first was "prochlorperazine" 10 mg. I never had to take the second pill, "ondansetron" 8 mg. I never got sick and so far have gained seven pounds which I am so hoping is water weight! I don't want to be the only one on this board who got fat on chemo and radiation.

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

I think I'm a ways away from not knowing it's there! But you remind me that most things improve with time. It looks pretty puffy around the bottom of it and the dog jumped right on top of it this morning. Perfect aim to wake me up. It was still bandaged. He's not coming out of his crate until I am on my feet tomorrow morning and in full (ha, ha, ha since he's a puppy) control!

z's picture
z
Posts: 1250
Joined: May 2009

When I 1st looked at the profile picture, and I've looked at it several times, and until just now I didn't realize it was sideways. I was thinking what the heck is that thing, lol, and now I see you and the radiation machine. Duh lol. Lori

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Leave it to me to put it in sideways!

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Hi Sandy,

I was told on the 7th of this month that I too have anal cancer. I have already had my PET scan so I can tell you what you are looking at for the procedure. If you are like me, I like to know as much as possible so I am not surprised with anything. This is my experience but I would think that yours would be similar so here it goes.

You will be given instructions on what you can eat and what you can't eat. They will have you come early for the following. The test requires your blood sugar to be under 200 so a fingerstick test was given. Make sure you go to the bathroom before they start. Very important. They inserted a butterfly needle into my vein in my arm and inserted the radioacity tracer with glucose. This does not sting or hurt going in. It does not make you feel funney or anything. My tech made sure I was comfortable and brought me nice warm blankets. I brought a book to read because you can not leave the recliner for at least 45 mins to an hour. When they come back in they will let you get up to use the bathroom again and I suggest you try because the actual scan takes 30 - 45 mins also. At this point you will lay on a machine just like a ct scanner but larger. I was lucky and my hospital has a machine that took my CT scan and Pet Scan at the same time. After they do the CT Scan they do the Pet scan. I had a scan from the top of my head to my knees. He divided me into 7 sections and each section lasted 4 minutes. The only uncomfortable thing was that I had to lay my arms up over my head the whole time. It didn't hurt but was not the most comfortable possition. Make sure they put a wedge under your knees so your back does not hurt.

That was it. I had no side effects and even drove myself home. If you do not know how the PET scan works I can answer that too, so just let me know. If you already knew all of this I am sorry for taking up the space but I did not know what was going to happen when I had mind done.

We all complain about some things. We are all on the same path here and hopfully the ones who go before can remove some of the stumbling blocks for the ones who follow.

Remember: "If God brings you to it, he will bring you through it" God Bless and let us know how it goes. :o)

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Not too long even if I had heard it before (and I had not). But if I had it wouldn't hurt because I was born with a density factor I've struggled with my whole life:-) I am so glad the port will have a chance to heal since I know that position is uncomfortable and would be more uncomfortable if I didn't have a week to heal. They do know what they are doing at Sloan Kettering;-) It sounds like I will have pretty much the same thing you had except not a full body scan. I don't think the insurance company approved that, but they are going to do the upper abdominal area. It's fascinating how these machines work and what they look like. So if you want to go into more detail in layman's terms take a crack at this so not technical mind of mine!

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Hi Sandy,

I tried sending you a private e-mail. Did you get it?

Thanks

Cindy

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

No - I didn't see an e-mail. But thanks. Hope you are okay.

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Just wanted to say I will be thinking about you tomorrow when you have your scan. It will be one more thing down.

I received my Chemo pump yesterday and my first radiation today. Doing pretty good so far.

Let us know how your day goes tomorrow. We are hear for you! Cindy

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Good Morning, How did your pet scan go?

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Ha, ha, ha! I was really nervous about that thing but I put my arms up and closed my eyes and concentrated on Reiki chakra stuff and had to keep reminding myself not to fall too deeply asleep. I was afraid I would move. But I didn't. I was able to just really relax. What a shock!
The CT scan of the upper abdomen was easy too since it wasn't "with contrast" like last time. We did a "dry run" for the radiation treatments yesterday and they told me not to empty my bladder when I come in for treatments. I have an urgency problem so I had gone FOUR times since walking in the door before getting on the table. The doctor said don't go even before leaving home and I told the nurse "WHAT?????" So they changed it to just don't go when I get there until after the treatment is over. That is going to be so UNRELAXING!!!!! I'm liable to pee all over their table. Wouldn't that be something. Oh well, they've probably seen it all. I'll just do my best.

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Hi Sandy, I am so glad it went well. It is amazing how we can fall asleep on these tables. Just goes to show how much our bodies need the rest. Let us know when you get your results!

Cindy

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Ha, ha, ha! I was really nervous about that thing but I put my arms up and closed my eyes and concentrated on Reiki chakra stuff and had to keep reminding myself not to fall too deeply asleep. I was afraid I would move. But I didn't. I was able to just really relax. What a shock!
The CT scan of the upper abdomen was easy too since it wasn't "with contrast" like last time. We did a "dry run" for the radiation treatments yesterday and they told me not to empty my bladder when I come in for treatments. I have an urgency problem so I had gone FOUR times since walking in the door before getting on the table. The doctor said don't go even before leaving home and I told the nurse "WHAT?????" So they changed it to just don't go when I get there until after the treatment is over. That is going to be so UNRELAXING!!!!! I'm liable to pee all over their table. Wouldn't that be something. Oh well, they've probably seen it all. I'll just do my best.

mp327's picture
mp327
Posts: 2892
Joined: Jan 2010

I'm glad to hear that your PET scan went smoothly and you were able to relax. As far as the full bladder issue, I was told to do the same thing. I had it down to a science towards the end of my treatments, knowing just how much water to drink before I left home and the perfect timing of it. You'll do fine. If you are nervous about having an accident while on the table, just tell them and they can put a Chux pad underneath you. Trust me, you would not be the first person to ever do that! I'm sure all will go well for you!

sephie's picture
sephie
Posts: 523
Joined: Apr 2009

why do they want you to have a full bladder???? does that help keep radiation from damaging it??? sephie

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Sorry for all of us but once you are here for a while you will see some of the gifts. Especially that we have each other. I was diagnosed May 5th.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Sandy,
The first week is overwhelming. Tests, scans, tatoos, info overload. I remember being in a daze, in disbelief, terrified and yet ready to fight like **ll. Things settle down a little after everything gets started. Then about 3 - 4 week into the whole thing you may begin to feel the impacts of radiation. For me the last three weeks were hard and I counted the days, almost the hours. Listen to your body, rest when you are tired and don't try to fight the fatigue. Rest as much as you need to. They will most likely prescribe meds for the nausea, diarrhea, etc. I thought I was tough and didn't need them, then whamo! So like a good girl I began to take the meds and it helped tremendously.

I will keep you in my thoughts and prayers.

Liz

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

My doctor wrote two prescriptions for nausea for when the treatments begin. I have morphine and Vycodin which I am taking (morphine morning and night) but still having painful little deep in the pelvic bone like spasms which make me a little anxious. I am also worried about constipation from the pain meds. I also had to take Prednisone this week for poison ivy and another medication for thrush. Which evidently is from a "compromised immune system." I never have suffered from constipation in my life until now. The sedative for the port surgery probably didn't help either. I don't know what I would do without you and the others. Thanks.

z's picture
z
Posts: 1250
Joined: May 2009

Sandy, Are those clummer spainels? If they are remember the one that won at Westminister?
Beautiful dogs. I tried to comment on your expression page under the picture, but was unable to. Lori

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

The one on the right is our dog, Luke. The one closest to me is his sister, Sunny. Sunny was kept by the breeder for showing but now she has changed her mind. I am crazy about Sunny as you can see in this picture. For some reason, we just "click." She is coming over to visit us again on Friday and I am so wanting to adopt her. I know it's bad timing but still hoping we can take her. I call Luke "Dr. Luke" he makes me laugh and feel so much better but it is really fun watching the two of them together.

sissy310
Posts: 300
Joined: May 2010

Hi Sandy - can't comment on the port...I had two PICC lines for each round so I am not sure what it should feel like with the port. I will let others who have gone through that comment. I remember, as Liz said too, the flurry of activity the first week with the tats (wanted a tat but now I have red dots...wonder if I can connect them to make something useful?) and ugh the having to lay there to be molded. I had forgotten about that until you mentioned it. I kept thinking how the heck am I going to lay in this position while they do radiation. But it wasn't as bad as I thought it would be. I always held something in my hands across my chest that someone sent me, a locket or a small stuffed animal. That helped me.

I've always had constipation. I kind of thought harvey was caused because of my chronic constipation and hemmi's so I'm always eating fruit, fiber, veggies, whatever helps. Right now I'm using benefiber three times a day and take two colace at night, not to mention chewing on fiber one here and there to snack. That seems to keep things moving along okay but forget it if I forget one or like you had to take some type of pain killer with codeine. I NEVER worried about whether or not I went and how and now that seems to be my job.

As for complaining? Heck...complain to your hearts content. That is okay. I vented and whined so much in here that I'm surprised people didn't come in and say, oh gosh, she is here again yapping away. lol. Seriously, that is what this forum is for. I'm thinking of you and praying for you. Hugs, Marilyne

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Especially about the stuffed animal. I'm not afraid to connect with my inner child while in there. It made me smile to think about old Harvey blowing up.

monty gizmo
Posts: 12
Joined: Jul 2011

Thanks for all the information, and beautiful quotes. I am starting this
journey, and I hope to be strong. Haven't been sick in 35 years or taken
an antibiotic or aspirin. All this is pretty overwhelming.

z's picture
z
Posts: 1250
Joined: May 2009

Hello Monty, Have you been diagnosed with anal cancer? Sorry you had to find us. Please ask any question you want. I wish you well Lori.

Captain11
Posts: 88
Joined: Apr 2011

Hi, Sandy, Hope all is going well your first week. I also have PET/CT scans which go from the neck to the knees. I always bring a book or magazine and I wear a hat or bandana , a sweater (with no metal buttons or zipper) and gloves, because it is freaking COLD in the lab. I also wear elastic waist pants and button down shirts or pullovers with no metal at all, this way I can stay dressed and don't have to wear that hospital gown which opens in the back. By the way, does anyone know why, with all the medical technology and breakthroughs that have come down the pike over the last 50+ years, that there has been no upgrade at all on those hospital gowns?????? For my scan I was given the finger stick, and the blood count has to be under 200, and then the butterfly needle for the radioactive injection, which lasts only a few seconds. The isotope has to go in in conjunction with a saline type solution, so you might taste the saline, but it goes away real quick. Then I get to drink abut a quart of sugar goop, which tastes like a creamsickle and really isn't too bad. Just a lot to drink in the hour prior to the scan. I know you have to fast at least 8 hours, except for water and whatever meds you take, except for diabetic meds, (check with the dr first if you or on diabetice meds). Absolutely no candy or gum chewing for at least 6 hours prior to the scan. The reason is that the muscles used for chewing and sucking on candies can harbor the glucose from the test and it will give a false reading, as though there are tumors or something going on. Because of my fecal urgency situation, I take an imodium prior to going for my test, otherwise I have to keep getting up to go to the bathroom. The techs will allow you to use the restroom, but they want you as still as possible while you are drinking that goop, so you will definitely use the restroom just before you get the scan. I can make it to the end of the scan, then I really have to use the bathroom again. If you absolutely positively can not hold it, you can ask to go during the scan, BUT it is hard for the techs to get you back to the spot where you left off and continue the scan. This is stuff you probably won't have to know, I just want to keep people informed of the possibilities you can expect. Other than that, the scan is a real cakewalk. I also had a port. I had no problem with pain or anything. I was lucky in that my surgeon is also a cancer survivor, and he knows how to show compassion for cancer patients especially. He gave me such comforting words. After about 6 weeks, my port however started coming out of my chest, so it had to be removed. When I learned that the cancer spread, I had to have a new port put in. By that time, I had lost about 20 pounds, and there was not much meat on my bones, so that was uncomfortable, but very, very tolerable. I hope your scan goes great for you. God bless you. Keep us posted. Compalin all you want. Actually, don't think of it as complaining, but as giving us all another set of experiences. Good luck tomorrow.

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Thank you. It will be a first for me. I'm so glad a friend is coming with me. My husband is with his mother for her 90th birthday celebration. Is your cancer in remission now?

Captain11
Posts: 88
Joined: Apr 2011

I completed my treatments in March 2010 and have been clear since. I went at 3 months, 6 mionths, 10 months, and 14 months post treatment for the PET/CT scans. i hope all went well today. God bless.

mp327's picture
mp327
Posts: 2892
Joined: Jan 2010

I just wanted to say hello, as I've been gone the past week. I hope all is going okay for you and that you survived the scan okay! It's really not that bad. Please keep us posted on your upcoming treatment.

melbas2
Posts: 108
Joined: Aug 2010

Sandy, How long did it take for your shoulder to stop hurting? I'm on day 5, and it's still hurts. Not to mention that they tried it in my left side first, which didn't work, so both sides hurt. I tried to drive to the Post Office today, but that's not happening yet. I did ask for pain pills and I take one per day, usually at bedtime. Tonight I took it a little early. I tried to do laundry, definitely a no go. My husband put the clothes in the washer & dryer and then brought them to the bed for me to fold and hang up. I'm learning to do things slowly, I just want to know when this pain will go away? Thanks, Melodie

mp327's picture
mp327
Posts: 2892
Joined: Jan 2010

It may take a few days for your pain to subside. I'm sorry that you had to be traumatized on both sides of your chest area--one is bad enough! One suggestion I have for driving (and this came to me from another blogger) is to cut a piece of foam and put it between you and the seatbelt. I wish I had known that when I first got my port--it was on the left side and driving was very uncomfortable! Hang in there--your pain will go away!

Nan-Peg11
Posts: 15
Joined: Aug 2011

I've seen references to getting tattooed. What does that mean? Thanks

mp327's picture
mp327
Posts: 2892
Joined: Jan 2010

When the radiation simulation is done, the techs will give you very small tattoos (mine are on the very top of both thighs on the sides and in my pubic area). These are permanent and will help them line you up on the machine for each treatment in the correct place so that the radiation beams are targeted properly. The tats are very small (about the size of a pin head) and are done in the same manner as a regular tattoo--needle and ink. It's just a little uncomfortable--nothing more. I was kind of hoping for something more exciting than just a few dots--oh well!

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