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Celebrating another 3 months of living NED

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha All passed my THIRD 3 month check up with oncologist...no evidence of disease; CA 125 went up one point (11 from 10, but the one before was 11 so Dr considers it stable); doing better overall but the anxiety just before the appointment got out of control and I was not pleasant; plan the next time to hide for a couple of days; thought I was doing better since I didn't cry when I made the travel arrangements (have to fly to Honolulu from an outer island to see the doc)and called the onc clinic to fax my lab requisition to the local hospital, but about two days before the appointment a flood of anxiety hit me from out of the blue; ANYONE ELSE GETTING CRAZY BEFORE GOING FOR A CHECK UP; I know a certain amount of trembling is normal so I meditate and pray, take a little Xanax and tell myself whatever happens, happens; not much one can do right? it was as if my BODY remembered the trauma and wasn't buying any of that serenity ****; Doc says in time it will get better "small steps and you'll get there; you're a survivor"; he again reiterated his confidence "this cancer is gone and it's not coming back; we got it all"; I told him I don't understand how he can be so confident as just the week before I admitted a patient to my homecare agency who had uterine cancer 40 yrs ago (had cobalt treatments !!!!) and was now dealing with lung cancer; his response was "different cancer, different reason"; still feeling emotional..just like crying after a fright; anyway wanted to share the joy and relief; for all of you still in the midst of the fight, I was diagnosed 5/22/08, UPSC grade 3; total hyst etc 6/12/08; stage 1A; 8 cycles of Carbo/Taxol; no radiation; We live to dance another day; my prayers and best hopes are with you all...Mahalo (thanks) for being there Marie

Ro10's picture
Ro10
Posts: 1421
Joined: Jan 2009

I am so happy for your NED. That has to be reason to celebrate. I am sure everyone has anxiety before they go for their check-ups. The fear of the unknown causes so much anxiety. Until you get the news that everything is okay makes one worry. Keeping positive thoughts help, but I know it is hard to be positive all the time. Knowing the type of cancer we have and that one little cell can grow quickly is cause for concern. But we have to enjoy the good news when we get it and live each day to the fullest. Wishing you much joy as you celebrate each day. Rember those words "you ARE a survivor" In peace and caring. HUGS to you.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Marie....such great news! I don't think your anxiety right before your check up is unusual. Keep dancing with NED!!!

Blessings! Karen

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Dance on....

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Marge and All thanks for the support; Marge.. where did you get the button; did you have it made super!!!! Marie

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Facebook...

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Hi, Marie!
I look to you for guidance as I was also diagnosed with UPSC at stage 1A. It was found in 2 places. One on a polyp in the middle of the uterus and one just a short distance above the cervix. I chose to try to complete 6 rounds of carbo/taxol for the UPSC on the polyp plus 3 rounds of vaginal cuff brachytherapy for the UPSC near the cervix. Just had my 5th infusion this morning. My blood pressure yesterday was 160+/110+ with my pulse above 110 when I went in to review my labs with the gyn/onc. Also I had to wait at his office just under 2 hours (2 emergency long visits ahead of mine). I had felt it rising the previous night because I was so worried about the results of my labs and was afraid that chemo might have to be postponed. I had been so much more exhausted during the 4th round and thought the levels of the WBC, RBC and the platelets might have dropped too low. Fortunately, they are still cruising along just at the edge of safety. As you suggest, maybe I should try taking something before my next check-up to see if it might help with the "crazies". I think I have a couple Lorazepam and a couple Diazepam. I'll read up on them to see which might be more helpful. Like you, I will watch for suggestions others might have to help ratchet down the anxiety. Last night after I got home and had a nap, I took my blood pressure and it was 112/82 with a pulse of 80. Much better. Because the gyn/onc and I did not receive the UPSC diagnosis until almost a month following my hysterectomy, a CA125 has still not been done. He will request the first one following my chemo at about the time of my 2-month follow-up. It would have been nice to have a baseline marker of some sort. Oh, well.
Marie, I wish all good things for you in your continuing DANCE and will be thinking of you when my friends take their annual post-Christmas vacation to Hawaii while I ponder the the depth of snow in my driveway and wonder whether to shovel or wait for it to melt naturally!

Hugs! Sally

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Sally...perfectly understandable; I've been reading some wisdom from a budhist nun Pema Chodron...Comfortable With Uncertainty; she has some comfort to offer, but it's way out of the mainstream of western thinking; lots of talk about the illusion of permanence; anyway... BREATHE, then breathe again; I can relate to the elevated blood pressure situation; it happens all the time when I stress; yoga has helped a lot but not the pretzel twisting kind; at the local free education center, I found a woman who does Restorative Yoga; all the exercises are done in a chair or on the floor; I'm learning to meditate more often and just shut off the "thinking" that goes on in my head which leads to worry; we lucked out at Stage 1A (if you can call developing cancer any kind of luck LOL)
good luck with finishing chemo; in retrospect the chemo and surgery were easy in comparison to trying to get a "life"; still struggling with wanting to chuck it all (work, house) and just hit the road and look at everything; be spontaneous

my prayers are with you (ps originally from the Northeast; lived in Colorado as well; I don't miss the snow)

Marie

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Hi, Marie!

Again, what a huge relief to have another tip top 3 month visit!

I know it's a while ago for you, but do you recall how many of your lymph nodes were removed for examination at the time of your hysterectomy? If you can find your report or just plain remember, I would really like to know. I only had 9 removed because the biopsy prior to my hysterectomy did not show any grade 3 cells, so the surgeon (gyn/onc) was not thinking about staging in relation to UPSC when he did the hysterectomy surgery.

Thanks so much. Sally

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Again Sally...14 from L pelvic region, 8 from L Aortic, 7 from R pelvic region and 4 R caval nodes (don't know what that is); 33 total; now don't go worrying; if you put 5 clinicians in a room you're going to get 5 different approaches; it's the end result that matters

Marie

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Thanks, Marie, for the detailed information on your lymph node surgery.

The caval (or paracaval) nodes are the RIGHT lumbar lymph nodes and include the lateral caval, precaval, and postcaval nodes. The aortic (or paraaortic) nodes are the LEFT lumbar lymph nodes (on the same side of the body as the heart/aorta) and include the lateral aortic, preaortic, postaortic, and the intermediate lumbar lymph nodes.

So it looks like you had 14 lymph nodes removed from the LEFT PELVIC region, 8 from the LEFT LUMBAR (aortic) region, 7 from the RIGHT PELVIC region, and 4 from the RIGHT LUMBAR (caval) region. When standing, the lumbar lymph nodes are further toward your head and the pelvic lymph nodes are below them, further toward your feet.

I really appreciate your detailed reply and am looking forward to reading your next good report in 3 months!
Sally

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