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Dealing with bumps along the road

truckingalong
Posts: 444
Joined: Aug 2010

Last Tuesday, I had to cut off work abruptly due to headaches, vertigo and hot flashes. Since then they don't seem to go away easily. Had some good hours though. I am sure stress has to do with this because I had many tests this week in order to be ready by Tuesday for 1st chemo. Two days ago, I had port planted in - what an adventure. Hospital staff rolled me into the surgery room full of equipment - looking at the ceiling there were many oversized vacuum type of hoses hanging and a huge machine showing my veins plus walls full of packaged tools which reminded me of Star Wars movie so I decided to visualize and watch that movie to help distract and calm my nerves throughout the procedure. It worked! (Last part of the procedure I was sedated but alert enough to be there.) What is new to me is that I now have a permanent bump on my chest that I have to get used to, huh. Yes, I am working on a new attitude of seeing this as an adventure - surfing on waves. It is amazing how our bodies react to stress and I gotta listen to my body more so to decide what activities I can do hour to hour rather than for the day. Yesterday, I was shown the infusion room where I will receive the stuff. Wow, this is mind boggling because it has been 3 weeks since I got the diagnosis of HL - now I am one of them... I realize I am dealing with 2 evils: do nothing and feel worse or go through treatment and feel better - so I take the latter. :)

Liz

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Liz,
You have the right idea, bumps in the road. Some are small, others can be rather large, but all are to be passed by. The emotional roller coaster is quite the ride, I ould be euphoric after treatment then breakdown when I could not get up enough energy to take the kids for pizza. Never know what each day has planned for us, so take each one as a new adventure. Like the analogy of the surgery ward, I was so nervous they knocked me out. ng my treatment days it was th "jiffy lube". Make the best of it, find humor in what you can about the process. Don't fret the little things, you will find out that most of what we worry about turn out to be ALL little things.
Dave

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Liz,

There are many bumps in the road like you say, but you'll be fine! Treatments are hard, but you can do this!!

Keep up the positive thoughts and I will send mine your way too!

Take care,
Beth

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Liz,
By the time I get my port implanted on Wednesday you will already be on day 2... just in time to bolster me up for my first treatment on Thursday. We are going to be just fine Liz..we just have to believe that and keep the faith! In order for us to feel better we have to get this treatment going. Hopefully we will have more good days than bad, and remember, "we are not alone"!!! We will ALL get through this together. I'm getting a lap top next week, so I'll be able to check in on you from my bed, my recliner chair, and even on Chemo days from the clinic...Oh goody...huh?...a month from now we will be laughing about all of our pre-treatment fretting...(knock on wood)...ha! Hang in there and keep talkin to us right up to Tuesday if you feel fretful...we're here for you!
Love...Sue

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, Sue and Everyone for the chin up! I realize I am not used to not working esp. being cut off (as agreed with supervisor) then whoa! I am in it for a ride. I am a clinical social worker and I worry for my clients but now I have to worry for myself. With all of your supportive words, I feel good moving on! Yes, Sue, I will check on you when I get to the infusion room and relax....

Love
Liz

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hey Liz, that port is so hard to get used to. I still fight and curse at mine, and it's been in for two months now! hahahaha Good luck with your treatment's! Vinny

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, Vinny.. I noticed that when I keep busy then the port does not bother me. At nights I start to feel it - ahhh! Ha, ha!

Oh, someone warned me that I have to get used to the smells in the infusion room because of the chemo medicine. Did that smell bother anyone? Obviously we have to put up with anything ... but I am just curious and want to be prepared. Liz

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

You are so right Liz, when your busy you don't notice it..... the only smell that bothered me in the infusion room was someone brought in egg salad for lunch!!!!! hahahahaha

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Why did you guys have to say say smells in the infusion room. I never smelled anything, but now I will smell everything. My nose will be twitching like a dogs. Those chemicals better not be a smellin'. They are supposed to be in an air tight bag. They better be, I don't want anything bad going in my body.hahahahaha!!!!

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

hahahaha your cracking me up! how many treatment's you got left John? for me after this Wednesday it will be down to two!!!!!!!! Vinny

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Vinny,
I finished #4 last Tuesday. I got 2 left. Got my midway pet scan just before the 4th round. They were saying the activity started out on my diagnostic scan in June as a #9 in the abdomen. Now it is down to a #3. I did not understand what that meant,so I asked. The dr. said the activity in tumors is measured by the SUV value within the cancer cells. He said he has seen it as high as 21-22 in lymphoma. The one in the groin and the shoulder show no activity. He said he was very pleased with a 3 at the midway point. My tumors in the abdomen were 5 and 6 cms. with smaller ones in the same area. I am assuming that is good and taking his word for it. Like I said, the term SUV is new to me so I assume it is good news. Maybe somebody else out there has a little more knowledge on the subject.
By the way, my blood counts dropped slightly this time around but they are still high range for having chemo. How are your blood counts doing now? John

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

John,

I've mentioned here before where anything less than 2 they really just watch and don't worry too much about it, that's what I meant was the SUV 2. My lung spot is down to 1.7 from 2.6 so we watch it and hope it continues to go down. At least that's what I am hoping for. :)

yesyes2
Posts: 461
Joined: Jul 2009

Hi John, When I had my recurrance my SUV was as high as 35. Very scarey. I also had a 22 in my stomach on a PET that after biopsy was nothing more than inflamation. My Onc says anything under 2 is considered in the normal range. But I've had at least 3 false positives. After treatment is completed and you have one clean PET my onc only does CTs after that. But all docs are different. Glad your doing so weel. Leslie

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Dixie and Leslie,
I am sure you have all mentioned it before but with the chemo brain sometimes I forget. I knew when the Doc. said suv I had either heard it or seen it somewhere. I was sure I didn't hear it in the doc's office, just wasn't sure where I heard it. There was a note on the report that said there was an uptake around the bones, but it was due to chemo and was normal.I knew there was shrinkage because I could not feel any lumps and the taughtness in my abdomen was gone. I just wasn't sure how much was left. The blood count was a little lower this time before round #4, but still in the high range for a chemo person. I have been feeling a little tired since last Tuesday, but I guess that is normal. I am glad I am down to a suv 3 at the half way mark. Be nice if everyone that has to go thru this could be so fortunate. Thanks for the response. John

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hey John, anytime you get positive news take it and run with it! Unfortunately my counts have not gotten any better. They are all lowwwwwww! hahaha.... My Onc is going to make me stay on the Prednisone for 5 days more, but not the full dose, she said that may help. My red counts are just .05 from becoming Anemic, hopefully it will stay above. It's nuts the way I feel like I can't catch my breath all the time, not a good feeling to say the least. Hey we are both rushing to the finish line so I'm gratefull for that!!!!! Vinny

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, Vinny and John for the laugh. Since I am deaf, I use other senses more but not necessarily meaning that I will have to smell everything like the dogs!! ha haha!!

Liz

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Never noticed any smell, but I don't have "infusion rooms". My docs office has private rooms and just a couple of rooms with 2 chairs but honestly most of the time I am by myself which I prefer.

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Liz,
Never really had a problem with the smell until the end, then attributed it to anticipacation. Have noticed that if I come in contact with a smell simular it makes me nauseous. Just wait till you see them all garbed up to giev the treatments. I first thought 'what the hell is that in that soup they are giving me?' Think it took my nurse longer to gown up than to give me the treatments. You will find out that your body remembers, no telling what will trigger a response. Sometimes it is actually kind of interesting.
Dave

yesyes2
Posts: 461
Joined: Jul 2009

Seems like when I'm doing chemo I'm super sensitive to all smells. Can't handle cooking smells or the sent to freshly ground coffee, which usually is very nice. When I had breast radiation I could smell the radiation, they said that was really rare. Strange things happen during chemo.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Wow being able to smell radiation is incredible. Seems like for several years now I can't really smell that well. What did it smell like? Can you describe it? I had radiation and am curious if it brings back any memories.

truckingalong
Posts: 444
Joined: Aug 2010

Sorry about bringing up the smell issue. I am just really antsy waiting for tomorrow and then think of unnecessary details! So, folks, just be cool about smelling, ha ha.

Yes, the infusion room is large like the size of 2 bedrooms. But it is nice to see all chairs are huge and cushy with leather and you can prop up feet there. It is very quiet - most of them are sleeping and others reading.

I just did yoga and I am calm now, smile.

Thanks,
Liz

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