Prayers needed

[Maddog]

Update:
Praise Jesus, her Brain and PET scan both came back negative.
Treatment will start in 2-3 weeks as she needs another CT scan as they need to know the exact target for the Proton Radiation Treatment which is the newest/best thing out there, we were told and not many of them in the U.S. Also said that the mass is pushing on her vocal cords and esophagus which is making her voice come and go and raspy at times, and getting harder to swallow. Said it is close to the heart too so that is another reason this Proton thing is the way to go, as they can pinpoint that somewhat.
She will also need a Port installed.
They are going to be using 2 different Chemo drugs which is once per week for 6-7 weeks and at the same time do the Proton radiation daily Monday thru Friday for 6-7 weeks. So she is going to be going through quite a bit in a short period of time.
We live 85-90 miles away (one way) so daily trips will be attempted, but don't know how sick she will get from the treatments and then driving home through switchbacks and mountains might be to nauseating for her. Might have to find a place to stay that is close to the Mayo Hospital in Phoenix for the Monday-Friday treatments. They recommended we stay down there, so will see how that goes.
After these 6-7 weeks, she will wait 4-6 weeks and then some more CT scans, then if all is going well from the radiation and chemo, they will give her Durvalumab IV's treatment every 2 weeks for up to and maybe more than 12 months.
I may have some of this screwed up as it was a lot to grasp in a few hours meeting with the Oncology and Radiation Doctors. They kept saying she is very fortunate to be able to get the Proton Radiation Treatments as it is the best of the best. Both Doctors are great and explain things well and the Radiation Doctor is a jokester and helped to lighten up the situation somewhat. He even gave us his personal cell number and said call or text if we have questions or not feeling good or anything at all to do with this treatment. He said i will get back to you that same day or the next day at the latest.
So we are on hold until doing the Port and CT scan hopefully this next week.
Will update more as we know.
Appreciate all the prayers and believe they were answered with these 2 negative tests. So keep them coming please!

Doesn't the hospital offer "hotel" living quarters for patients and their families to stay in? Free of charge? I heard some cities/hospitals have that.

 

[BrokenBackJack]

Doesn't the hospital offer "hotel" living quarters for patients and their families to stay in? Free of charge? I heard some cities/hospitals have that.

Never heard of that before. Have heard some have a sort of discount rates and might have to check into that for sure. Just in case.

 

[sl1000794]

Never heard of that before. Have heard some have a sort of discount rates and might have to check into that for sure. Just in case.

Trinity in Minot has some rooms available. My brother and I stayed there when Mom had her stroke. Don't think it cost us anything either. Certainly would be worth checking into.

 

[Kasey]

Glad to hear the good news. Will continue to keep you in my prayers, along with anyone else going through similar health ordeals.

 

[LBrandt]

The Hospital should have a list of places that have discount for patients. When the wife and I traveled to Seattle for her Proton Radiation treatment we were able to find " short term suits" Apartment that rented out by the weeks or months. What we found was very nice and the guy that we rented from really cared. Nice quiet place with every thing we needed to cook and such just like home. Something to look into John. In our Prayers both of you. LB

 

[BrokenBackJack]

Good to know, will have to check with them when they call us.

 

[wslayer]

Glad to hear BBJ. Prayers continued for Brenda.

 

[BrewCrew]

From the MAYO Phoenix website - John I hope this helps - it looks like a few good options for you and Brenda:

[h=2]On-site hotels[/h]Mayo Clinic has partnered with Marriott to place quality hotels on both the Phoenix and Scottsdale campuses. On-demand shuttle service from the hotels to the clinic is available daily during regular clinic hours.

• Phoenix. Residence Inn by Marriott Phoenix Desert View at Mayo Clinic. For reservations, call 480-563-1500 or 866-754-5927 (toll-free) or reserve online.
• Scottsdale. Courtyard by Marriott Scottsdale at Mayo Clinic. For reservations, call 480-860-4000 or 888-236-2427 (toll-free) or reserve online.

[h=2]The Village at Mayo Clinic[/h]The Village at Mayo Clinic is an on-site hospitality house — a low-cost, extended-stay lodging option. These spacious casitas are reserved for families of out-of-town patients who are receiving transplant or long-term cancer treatment. Call 480-609-1324 for lodging and updated information.

 

[Maddog]

From the MAYO Phoenix website - John I hope this helps - it looks like a few good options for you and Brenda:

On-site hotels

Mayo Clinic has partnered with Marriott to place quality hotels on both the Phoenix and Scottsdale campuses. On-demand shuttle service from the hotels to the clinic is available daily during regular clinic hours.

• Phoenix. Residence Inn by Marriott Phoenix Desert View at Mayo Clinic. For reservations, call 480-563-1500 or 866-754-5927 (toll-free) or reserve online.
• Scottsdale. Courtyard by Marriott Scottsdale at Mayo Clinic. For reservations, call 480-860-4000 or 888-236-2427 (toll-free) or reserve online.

The Village at Mayo Clinic

The Village at Mayo Clinic is an on-site hospitality house — a low-cost, extended-stay lodging option. These spacious casitas are reserved for families of out-of-town patients who are receiving transplant or long-term cancer treatment. Call 480-609-1324 for lodging and updated information.

So kind of you to go the extra mile and provide this information for them.

 

[BrokenBackJack]

A friend checked with the Marriott next to Mayo and he was told $160-$191 a night plus $7.00 a day for parking. They do not offer a weekly rate, that is all with the Mayo discount rate. I guess i am living too much in the past.
Hoping we can find something close to Mayo if we need it. Hate driving in town and hate the traffic down there especially since my stroke. Will be asking around at Mayo when we go back down there next week.
Mayo called today and she has appointments this coming Monday and Tuesday. She also has to have another Covid test on Monday, for her Pulmonary test on Tuesday. Hope i got that one right.

 

[ndfinfan]

God bless John...so glad those results came back positive. Think about and pray for you guys often...keep us posted!

 

[BrewCrew]

A friend checked with the Marriott next to Mayo and he was told $160-$191 a night plus $7.00 a day for parking. They do not offer a weekly rate, that is all with the Mayo discount rate. I guess i am living too much in the past.
Hoping we can find something close to Mayo if we need it. Hate driving in town and hate the traffic down there especially since my stroke. Will be asking around at Mayo when we go back down there next week.
Mayo called today and she has appointments this coming Monday and Tuesday. She also has to have another Covid test on Monday, for her Pulmonary test on Tuesday. Hope i got that one right.

John - look into the Village at Mayo when you are down there for you appointment next Tuesday. I looked at the information and it seems it is designed specifically for you two - chemo treatments for folks that live a long ways away. Don't give up hope that it is affordable. My prayers are for both you and Brenda - be safe in your travels - keep the faith - it will get better.

God Bless you two.

Bruce

 

[BrokenBackJack]

Update:
They got the Port put in and tried to do the Pulmonary Function test and Brenda only lasted 5-10 minutes and couldn't finish. From lack of lung capacity and hurts when she takes normal breaths and taking big breaths, just folds her over. Couple that with just getting the Port put in, she was in too much pain.

She is really sore from above her right boob, up her chest, all the way to her right ear. Swollen, black and blue, and hurting like crazy from the Port installation. It is getting better somewhat each day.

So had to go back down to Mayo in Phoenix yesterday (Thursday) for another Covid test as they are going to try to do the Pulmonary Function test this afternoon (Friday). Hope she can get through it.

This past Monday or Tuesday, can't remember, they did her CT scan for the Proton Therapy so they can direct the beam where they want/need it. They made a mesh mask/apron that goes from her chin down to her stomach, as they don't want her to move one bit when doing the Proton Therapy. They said she has to be held perfectly still. Quite the ordeal and she is claustrophobic too. This would have me flying off the table with anxiety and I am highly claustrophobic too since my 3rd back surgery and last stroke.

If I have it correct, she starts her Chemo this next Tuesday, March 23rd. Still don't know when the Proton Therapy Radiation starts as they have to study her CT scan to determine the paths to take and other things. Said it will be 10-21 days from her CT scan, to know when she will start her treatments for the Radiation. The Chemo will be once a week with 2 different Chemo's and Radiation will be M-F every week. Both will be for 6-7 weeks.

So hoping and praying she get through the Pulmonary Function test today, as it is very important, as they have her entered into some kind of a study for the Proton Therapy Radiation Treatment. When they finally determined the size, where the mass was located, and the type of cancer, they "highly" recommended, she agree to enter into this study. They feel it is very important with all the info that they had on her condition. She has always been about helping others, so the choice was easy to make, but they need the Pulmonary Function test done or she can't be in the study.

Will update more later and once again thanks for all of your thoughts and prayers and continued support!
John

 

[LBrandt]

Stay Strong you two. Prayers sent every day for you both. We know what your going through. LB

 

[BP338]

I think about you guys often. I tried to see if any of my valley friends/relatives have or know of something and didn't have any luck. Hope all works out.

 

[wslayer]

Wishing the very best for you and Brenda going forward. I am also in the claustrophobic category so know what your dealing with on that perspective.

 

[Prairie Doggin']

I have been following since your first post, but never felt I had the right words... still don't, but hoping for the best for your wife. Take care of yourself as well as your wife. You are both in my thoughts.

 

[BrokenBackJack]

Update:
She got through the Pulmonary Function test yesterday, Praise Jesus!
Not without much pain and became very nauseated during the test and after. Soon after leaving the clinic and just driving through Scottsdale, where she had her test at Mayo Clinic there, she began vomiting and luckily they had a container in the car. Stayed parked at the Lookout for a little while and was able to make the drive home but she stayed nauseated until very late last night. Feels better this morning somewhat and hope that continues.
Will see what next week brings.

 

[BrokenBackJack]

Update:
They didn't start her Chemo this week because the Proton Radiation Therapy isn't ready to start and they want to start them at the same time as they have much better results doing them both at the same time. So now it is looking like the week of April 6th or somewhere in there.
Ended up taking Brenda to Mayo ER again on Monday and they admitted her and as of today (Thursday) she is still in the hospital.
Her pain level was way up, anxiety way up, nauseated terribly, and no bowel movement for 2-3 weeks. They now have her pain regulated enough for her to come home but until they can get her bowels to move, she won't be coming home. She tried everything at home and they have tried more things in the hospital and so far no luck! Needless to say she is miserable. She has enough pain to deal with without having to deal with that. She has dealt with constipation her whole life and now add in pain meds and it quadruples the situation. Also her not feeling good enough to even go for a walk.
So that is all i know as of now.
John

She is supposed to get her second Moderna shot this Saturday, so hope she is home by then.

 

[Brian Halse]

John,
My thoughts and prayers are still with you and Brenda.