Catching Up: Hi Everyone! I'm afraid I... - Blue Faery Liver ...

Blue Faery Liver Cancer

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Catching Up

DancingEyes63 profile image
DancingEyes63ModeratorCaregiver
4 Replies

Hi Everyone! I'm afraid I haven't been on here much lately. We've been so busy moving and working on the RV. Good things going o n though. Jimmy saw oncologist last Tuesday and his labs were good. Blood work and metabolic panels were stable. His liver enzymes are raised of course but haven't increased. His tumor marked had actually decreased. Was half what it was at last testing. Praise God!❤. Dr. wants him to continue the Lenvima at lower dose for rest of month. On November 30th has him scheduled for MRI and lab work and will decide where we go from here based on those results. He says Jimmy appears to be holding his own. He did start him on a steroid to try to improve his appetite and energy.

I've been busy painting and sewing curtains trying to get things organized and fixed up. Thanks to Andrea's encouragement I got involved in the Forefront project and LOVED it. So glad I did. If you have never tried any of the project opportunities I strongly recommend it. Starting on some other ones now.

I hope everyone is hanging in there. Wendy, how are you doing my friend? It's almost time for Jimmy's caregiver to get here so I need to get ready to go do our laundry. Hope everyone has a Blessed day!!!❤❤❤

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DancingEyes63
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Curly_Girl profile image
Curly_GirlCaregiver

Sharon, this a wonderful update! And your RV looks amazing - I absolutely love the colors, so fresh and cheerful.

Honestly, stable is just the best word, isn't it? It sounds like the Lenvima is doing a good job and I am keeping Jimmy in my prayers for his MRI on the 30th. Here's hoping the steroid helps too - Dave always did well on steroids.

I am taking each day as it comes, and of course finding things to be thankful for every day. I talk to Dave all the time (and the cats - I'm sure all of them wish I would just stop chattering, lol). I have been making a strong effort to stay connected with friends and family and not let myself be isolated. Learning new things (Dave was the one who did pretty much everything except money management) and staying busy!

Today I tried to drop off his Lovenox (heparin) injections to a local clinic (he had just received a shipment so they are unopened, five boxes of them) but they were closed. And I have four huge boxes of unopened Pleurx bottles/drainage kits - those are super expensive and I'm trying to find a place where I can donate them to people who need them. I might try the cancer center where Dave went - they had gifted us two bottles while he waited for his supplies to come in and that made such a huge difference. I would like to pay this forward!

Thank you for thinking of me; I am sending lots of positive energy, prayers and sunshine to you and Jimmy!

Wendy (currently freezing in Michigan - brrr!)

DancingEyes63 profile image
DancingEyes63ModeratorCaregiver in reply toCurly_Girl

Wendy so glad to hear from you. I think of you often and send up a prayer. It is so important not to isolate yourself. Jimmy had voiced his concerns often about that happening when he's no longer here with me. After I get through with the trailer, I plan to go back to some of the volunteer work that I used to do such as our local food bank. Also looking for a new church and hopefully can get involved there. I've tried to tell him that it's also easy to use keeping busy to avoid dealing with your grief. I know because I did that when I lost Manda. Sweet man wants to "fix it" so losing him is easy or something. He doesn't realize there is nothing that will be able to heal that loss but time. My heart aches for you because I know y'all had such a special love. Wish I was close enough to give you a big hug.❤I think it's great that you're donating the medicine and medical supplies. That is a wonderful idea. Thank you for the prayers, positive energy and sunshine. We're supposed to get in lower 40's or upper 30's the next couple nights. At least we have the North side of the trailer underpinned with insulation behind the underpinning.

Jimmy has a colonoscopy and endoscopy scheduled for next Wednesday so they can remove more polyps and re-band the esophageal varicies. I've been at laundry mat all morning. No washer/dryer in RV but Jimmy is planning on building a little shed and using the outside shower hookups so I can have a laundry room. He's already building a storage area under the fifth wheel hitch since it will be stationary. Hope you have a wonderful day and I'll talk to you soon. ❤❤❤

❤Sharon

bwpickard profile image
bwpickardCaregiver

Sharon what wonderful news!!! Stable with HCC is GOOD news!!!! You and Jimmy are so wise with investing your time in each other and your RV is beautiful! I am so glad he’s tolerating the lower Lenvima dosage better!! Cheers for your oncologist!!! Continued prayers for MRI results!!!

DancingEyes63 profile image
DancingEyes63ModeratorCaregiver in reply tobwpickard

Thank you. Yes, I'm happy to hear stable and holding his own. I know that can change in an instant with this terrible disease but I cherish and am thankful for every day we have. We built a raised platform yesterday for our mattress. The bedroom is small in a fifth wheel, especially an older model. The previous owners had started remodeling so had taken out the built-in beds, etc in the room. It had originally been set up with twin beds. The raised bed let's me put baskets and crates underneath to store our clothes. Planning on building shelves and nightstand on each side of bed and adding shelves above the two windows for pictures, my jewelry box, etc. It's small but fine for just the two of us. Since its stationary, turning it into our tiny house. ❤There's a couch in living room that pulls out into a bed of we have company. When it's finished it will definitely reflect "me" and "us". Whimsical, bright and colorful. ❤Hope you're doing well. You and Wendy are both in my thoughts and prayers. While I try not to dwell on it and just enjoy what God gives us, I know how quickly my status can change from wife to widow. 💔

Thanks again for your kind words. Look forward to hearing from you again soon.

Sharon❤❤❤

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