Just checking in! I miss you all!

Happy Sunday everyone! Sorry I haven't been around in forever but its been a crazy ride lately with my work, school and some of my own health blips that are minor compared to PC but annoying and time consuming nevertheless.

Just a quick update- Paul is doing okay. His PSA is stable but a spot on PET scan is a bit suspicious in his hip so off to oncology we go on the 30th to discuss. All his labs are stable actually! So status quo for now!

My school is going good-very rigorous but still getting straight A's, I should have my BSN this time next year and another 1.5-2 years for my Masters! Paul is amazing help with house stuff so I can focus on this, and he makes great coffee and keeps it flowing like a bottomless cup- who could ask for more?!?

My health issues are varied and working on solutions. Mostly autoimmune related (what a pain the arse this stuff is) and annoying but I am doing okay and under careful watch of way too many specialists for this. I have gained a lot of weight and fatigue is an issue I need to overcome to get proper exercise back into my life. Caregivers- remember to take care of yourself through all this!

Our CA vacation to attend wedding... Paul is going alone. Tossing the idea of riding out on motorcycle but July sun may not be best time for this. Anyone know of Motorcycle rentals in CA?

Paul is still having more hot flashes that a Red Hat gathering.

Hoping all is well with everyone and please feel free to email or call or whatever. I would love to hear from you. I am sorry I have been neglectful on here but please know you are all in my heart and in my thoughts every day. Let us know if there is ever anything I can do for you!

Krissy

Krissy-

Great to hear from you! And great news that his cancer is stable. I'm very impressed, but not surprised, by your straight A's. Now if we could just figure out how to transfer some of your overactive immune system to Paul!

- Allen

Good to hear from you.

Karen and I especially enjoyed your Red Hat analogy

Hello Krissy,
I about fell over when I saw your post. Great news about Paul's labs!
We miss you too, but having done the school thing, it's all encompassing. Have done the autoimmune thing too, just not together, thank you very much. Hang in there girl. You have a lot on your plate!
Beth

Wow I miss you all! I started to tear up just reading the replies! I need to stop being so sentimental!

Paul has Onc apt on Tuesday afternoon. The PET scan says the spot in his hip is suspicious for returning mets, but the PSA is the same.... I know the possible implications but not going to worry yet as it can be so many other things. Supposing they will biopsy as it seems to be in a place relatively easy to get to in back of right hip.

I am in "negotiations" with my rheumatologist to try to some infusions. Trying hard to convince him to try it. My labs look ok. Its tough because any changes in meds have to be run by my GI doc and eye surgeon now...My problems will eventually subside at some point and my kidneys just leaking small amounts of protein nothing to worry about and that seems how they gauge lupus here in the US despite all the other things.

The issue is there has been only one med approved for lupus in past 50 years... They have some for mild lupus, and then the big guns for when damage is bad (which seems like they wait to treat until its real bad). That needs to change.... I am unable at moment to take the mild meds and the few intermediate ones (methotrexate, cell cept, etc) have major side effects or are contraindicated for me due to other autoimmune stuff esp my GI crud (EGD/more bx are next Friday). I think my system needs to be hit like when you shock a pool lol. One big hit and start fresh. Autoimmune is so fickle and such a pain in the you know what. I swear I must have swam in a toxic dump site as a kid or something. It is an annoyance I have learned to live with like living with an annoying sibling always in your stuff....

And yeah- I wish I could give some of this overactive stuff to Paul to further kick pca to the curb! I saw a study how they are using treatments that stimulate the immune system into attacking bladder cancer.

Working in a cancer center and being able to research and help patients would be incredible! I know I want to do research but I also need that patient care part too. IDK but I am sure that things will just fall into place, they always seem to if I am patient.

Susan I love you (all the Susans), Beth, Everyone... I love and miss you! Give me some updates please!

Paul will be going to Cali solo on a shorter trip. I am staying behind due to work obligations and may take a couple days off do a fairly local thing with Paul just to get away. Many changes here at my workplace in staffing and structure and need to make sure my job stays secure.

We are about to take a drive up to the lake just to get out of the house, something we do too little of! Cumming, GA here we come!

Hi Krissy,
I don't get on here much either. Life has been busy but should be slowing down. I am glad I logged on and caught your post. Mandy and I send our best to you and Paul. Todd

Hello Krissy and Jeff ;
Hello to all I haven't been on here myself lately not that I haven't thought about everyone. I am so happy your numbers support positivity for Jeff. Your life is definitely full with school ect. You have to look after your self. !
For myself I miss Dave just so much it hurts and I still find tears fall freely on many a day. I still have a hard time believing he is gone . My biggest hope is a cure and not just a treatment is found for this .
I spend hours in my yard and gardens . Dave and I had a love for landscape and I will continue to make him proud of what I do . So far I am doing alright with it all as diffrent people stop to ask what i do to make my yard look healthy..? I got a new Dr that I really like and she put me on raberprazole for heart burn 2 weeks ago and I haven't felt this great in over 9 yrs. I had hortible coughing fits that were embarrassing and I was never with out a kleenex shoved somewhere,. I waitted over a year to get into a breathing clinic and I didn't have allergies or copd after all of that . But just a simple simple thing like a Dr doing something to help has definitely been great for me. She understood the stess level I have carried since Daves diagnosis and death. She actually knew how to carry out a physical that didn't hurt me . I feel like a weight has been lifted off of me because of her,. It also saddens me because had we just had proper health care like this maybe Dave could still be here. .What diffrence does great health care make ...all the diffrence in the world. When I was in her office she knew what my bloodwork and labs were .Last Aug the Dr Dave had asked to come and see him 2 days before he passed away. He walkwd in our house and the first sentence out of his mouth was refresh my memory what kind of cancer does Dave have . Whe had been in his office just 2 weeks earlier he knew nothing of any bone, ct , surgerys blood work let alone the fact that psa was over 4,000. Welcome to medical care Canadian style !
Well not much else is new Hang in Hold on take care of yourselves XOXO 💙 💙 💙 Sue