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Back from Mayo

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

We are back... by the grace of God and a thousand angels I drove us home tonight safe!! We did not get bad news, nor did we get the best news. What they said at Mayo was this Chronic pancreatitus is tough to get over. They did the scope and tests today, but the specialist did not think it wise to go for the biopsy just now. He was afraid of setting the pancratic spasms off again. Garth took a turn for the better on Thursday. Suttle, but better. He has to scan again in 2 weeks. The specialist was not able to tell us if there is a tumor in the mass. If the mass shrinks soon they will know. So nothing is black or white.... mostly grey. I will take grey over a cancer verdict anyday. They did say this was not presenting itself like a typical cancer. ( a few of us have heard that STORY before) We were on the road away from home 35 hours and it seemed like weeks!! What a fantastic place Mayo is .... We sat and watched people check into the hotel last night. They were from all over the world. One lady had never worn a coat before. One lady got from Mayo to Chicago and Mayo called her and told her to come right back. Lot's of stories there.........enough about us. Linda!! So sorry for the delay. It is a tough decision, but have you considered calling it enough for your chemo ? I had to stop at 5. I felt my body would have a harder time fighting more chemo than it would the cancer. I thought I had hit all the bases as fast and hard as I could then I knew I had to stop and rest to revive. So glad to hear that Marge is dancing with NED. I told you I wanted to share!!! Now let's keep passing him around. Thank you Thank you all for all the prayers and support. You have all carried us again. Can't wait to get caught up with all of you and to know the new sisters better. Deanna I hope your bad no hair days get better too. It is a hard thing to get around. God bless. Really tired!! Peggy

Ro10's picture
Ro10
Posts: 1425
Joined: Jan 2009

Sorry you did not get great news either. I hope your husband is feeling some better. I hope you will get good news soon, and the mass will shrink.. I am sure you are all physically and mentally exhausted. Will keep you both in my prayers. Glad you had safe travel even though it was very long. Take care of both of you. HUGS to both of you.

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

My prayers are with you both. Glad you made it there and back safely and can have "some" peace of mind.

MIND, BODY AND SOUL.

HUGS!!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Glad you're back safe and sound and that Garth was able to make the trip without the really bad distress he'd been experiencing! Worried for you, I read a lot about pancreatic cancer and chronic pancreatisis and I think there's a really good chance this isn't cancer. Like the doctor said, it doesn't sound like the pancreatic cancers of people I've known personally so please don't over-worry which does no good and just adds to your stress. (I know, easy to say, hard to do.)

I can only let my body guide my treatment now. This is the 2nd time in a row that my chemo had to be delayed, and if the extra week doesn't bring my platelets up to a safe level, I may be looking at moving on from chemo and into my radiation after only 4 rounds. My chemo oncologist won't be in this upcoming Monday and Tuesday, and I had to fight to get the okay to get chemo next Monday if my bood work is okay. We finally compromised on this plan: the oncologist will give the chemo nurse 'parameters' that I have to hit with my new blood work before I will be allowed to have chemo next Monday. He already set an appointment to talk with me on Wednesday, saying we need to talk whether I get my chemo or not Monday, so I know my prolonged low counts are a worry. Besides bleeding out with a cut or horrible brusing with a fall, really low platelets can lead to internal hemorraging (including blindness if behind the eyes), so you can only let your platelets get so low. That's why they want your platelets to be 100 to get chemo. My platelet count was 39, and the chemo yesterday would probably have knocked it down further into a really dangerous place. A month ago, for Round 4 my platelets went down to 49, but came up to 150 with the extra week's delay. So I think I have a decent chance that the extra week will get me above the threshold and I can get 1 more round of chemo in me. There's nothing I can do or eat to help build my platelets, and low platelets have no symptoms so I feel good.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

You are at such an ugly place in this cancer treatment maize right now. It is hard to fight when everything keeps changing. The good thing is that your CA 125 is still going strong. You may need a chemo break and go on to the radiation. Could that be why they recommended the sandwich thing from the beginning on mine? At least if you do radiation you can still be aggressive and come back to the chemo. Will they allow this with the counts you have? Lot's to think about. .............It will be wonderful to soon have spring!! I think we can both hear our gardens and plants calling from deep in the snow!! I wanted to start looking on e-bay and seed sites for some rare gourds and unusual things to plant for the kids next year. Are you planting anything new?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I know that radiation will further compromise my bone marrow and probably make it really hard for me to get back to the chemo, but I don't know if low counts prohibit the start of my radiation. I guess that'll be our conversation Wednesday. I am grateful that I have the 4 chemo rounds in me or I would really be scared with these delays. 'Delay of treatment' is actually listed as one of the dangerous side effects of low platelets. ARGH! You're right; this is when things can get ugly and decisions must be made. Thank God I have the low CA-125 and clean CT-scan or I'd be terrified.

Last fall, right before my surgery, I put in a Russian Sage and a fern that my step-mother gave me, so I am looking forward to a 'new look' in 2 of my flower beds this spring and summer. I look at the seed catalogues, but will still be in treatment (if all goes well) during seed-starting time here, so I haven't allowed myself to get too lustful for new plants. My step-daughter (24) who is the last of the children to live with us at home, is moving in with her boyfriend into a cute little house nearby and I am looking forward to helping her put in a flower bed there. The grandkids and I collected a lot of our own seed last year, but I usually just scratch in the seeds directly into the garden where I hope they will grow, or into my 'nursery bed' where I start things I want to get a little bigger before transplanting them into the borders. I am at the point where I have to dig things out of my flower beds to fit in anything new. That won't stop me from visiting my favorite nurseries and acquiring things, though, even if I have to plant them at other people's homes! I LOVE to dig in the dirt!

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