Weekend in Iowa

Bill, Ben and I went down to Mom and Dad's on Saturday.  Got there around Noon.  Mom had taken a nap in the morning.  She looked a bit tired and a little short of breath when we got there but she improved as the day went on.  She didn't take a nap in the afternoon.  I did a little cleaning for her (bathrooms and kitchen floor) which she wished she could help with but was grateful.  They showed us pictures of the headstone they have purchased for the cemetery.  (That was a little hard for me.)  Dad showed us the cleaning they had done in the basement this past week.  We found an old Wahoo board so Mom, Ben and I played that Saturday night.  She laughed and enjoyed herself.  Sunday morning she said that tired her out but she enjoyed being able to laugh.  On Sunday, Dad, Ben and I went to Sheldon while she napped.  We ate lunch together and then went for a drive in the country.  She was doing some remembering on Sunday morning about her childhood so I asked to drive by the place she lived on until she was 10 years old before they moved to "the hill" by Paul and Kim's.  They drove us by the cemetery to show us where the plot is they picked out (another hard one for me).  We drove around a little more and then went back to Boyden.  We left around 6 PM.  She did not nap in the afternoon but was tired by then.  She said good-bye and was heading for the couch.  I told her on Sunday as she was a bit short of breath at times to call today to see about getting fluid drained off again.  I said it might help her to use her energy to work with the pill to fight the disease rather than using her energy to get around.  They both said they'd see how she was today and possibly call to get in for that.  Her appointment with Dr. Jeffries is scheduled for Friday so they might try to get in before that to get fluid drained.  We had a good time - it was good to be with them.

Denise

Phone Call Tonight

I called Mom tonight.  She sounded a bit better than the last time I talked to her, not so raspy.  She's looking forward to getting the pill - hopefully tomorrow.  While I was talking to Dad, she got a call from the Palliative Care Department at Sanford.  The caller said Dr. Jeffries recommended that they call Mom to set up an appointment.  Mom feels like she is not ready for this yet.  She told me, "I'm not giving up yet."  She is still somewhat hopeful with the pill coming, the oil and rife machine.  I told her she has to know for now what is best for her.  I'm encouraged that she's not ready to just give up yet.  She still wants to fight and I think that's good.  I know we don't know how long we have with her but for now she said she feels pretty good and wants to do all she can on her own first.  She said eventually she may want an appointment, just not yet.

This Weekend

We had a good visit with mom and dad this weekend.  Just some brief details of our time....

Mom's color looked good Saturday morning when she got up.  She had to take the last of her bladder meds and after being up a few hours I thought her color changed a bit (more yellow) and she went to rest around 11.  When she got up about an hour later, she looked her normal color again.  She took some Frankincense orally at that point and we had lunch.  She ate really well at lunch and we had a great afternoon.  By appearances, she didn't tire at all, looked good all through dinner and went to bed around 10:15.  Somewhere in the day, I told them I thought she would benefit from at least another Frankincense during the day because I think that helped her at least feel better and have more stamina.

Yesterday, we left their house around noon and went to Sheldon for lunch.  Again, I think she ate decently and looked good.  I know when we said goodbye she went home and did the Rife machine and took a nap. 

I did get an opportunity to ask both mom and dad how long they thought she had.  Both answered they felt "her time was short".  I didn't ask them to quantify it, and really, only God knows the length of time until she leaves us.  She is beginning to think about her funeral a little bit, which I think is healthy and normal. 

We'll see how the chemo pill works out for her.  Hopefully it will arrive today or tomorrow. 

Karen

Playing with blog to see if I can remember what to do to post.

Talked to mom last night and she told me that Cure-a-script called that she has been approved.  So at this point, it looks like everything is a go for the chemo pills to arrive on Monday or Tuesday.  The rep at the pharmacy wasn't sure they could still get them out last night, but they should be going out on Monday for a Tuesday arrival.  At this point, I believe it when she actually has a tracking number and/or the pills in her hand. 

Thanks Carla for all the leg work you put into helping yesterday (and any of the rest of you who worked behind the scenes and I am just not aware).

We drove to Iowa last night after Jack's soccer game.  It was a spontaneous decision.  No one is up yet except for me so I can't say how mom looks (yet).  We will stay today and leave sometime tomorrow.  We didn't get here until 11:00 and thankfully neither mom or dad waited up for us.  Although if they were asleep I may have woken them when I accidentally set off the car alarm :)

Chemo Pills (Update)

Sorry for my delay in writing this post, it has been a busy (and tiring) week here.

After Tuesday, we found out that mom's Rx could not be filled by the Walgreens because they are not a participating provider with Humana.  Mom and I called Humana on Wednesday and talked to a CS Rep who gave us the name of some specialty pharmacies that are Humana participants.  Of the three, 2 did not carry the drug, but one did (Wal-Mart).  We were able to talk to the pharmacist at the Sioux Center Wal-Mart and he would begin working with the Walgreens to get the Rx transferred.  Mom and dad drove to S.C. yesterday morning to make sure this pharmacist had all the necessary information.  Yesterday afternoon, they received a call from him stating that Wal-Mart was unable to fill the Rx.  I don't understand why entirely, and mom and dad couldn't explain it very well.

However, the pharmacist found another mail-order pharmacy who works with Humana and he was transferring the Rx to them.  I asked mom to call that pharmacy and make sure they had it marked as urgent (which they did).  The new pharmacy told mom that they had all they needed and they would probably be calling her yet last night.  I asked mom to call me this morning to let me know if they have called. 

I did call Dr. Jeffries office yesterday and talk to Brandi in hope to solicit some help from them.  Brandi's response was there wasn't really anything they could do, but that we would need to continue to call the pharmacies to expedite the situation.  The conversation was disappointing. 

I'll try to post after I talk to mom this morning, but I have been buried at work and so I don't know when I will get a moment for something personal.  :-)

Karen

My Phone Call with Mom & Dad today

I called today to see how everything was with mom.  She said that today she was kind of tired (she believes from the Rife machine) and that she was coughing a bit more (she also believes from the Rife machine).  She said she is coughing up phlegm.  She did have a coughing spell when we were on the phone and then shortly after that she gave the phone to dad to talk to me.

When I was on the phone with dad, he mentioned (because mom was in the bathroom) that he didn't think the coughing was from the Rife machine, but he feared she was having more fluid build up again. 

He also mentioned he was getting frustrated that they hadn't received the Rx yet.  They both mentioned they have been sitting in the house all day every day for fear that they might miss the delivery (which they would need to sign for).  Dad and I agreed that I would do some phone calling to see where everything was at with the Rx.  I called Sanford and with the help of a very nice pharmacist was able to locate the mail order pharmacy who has mom's Rx.  I called them and they told me it would be 3 - 5 business days before the order would be processed.  So I conferenced mom into the call and with the help of the nice CS Rep on that end, got them to update the order to 'stat' so that it will be processed tomorrow and she will have the Rx by Thursday.  They will call mom and dad tomorrow to confirm everything and then they will overnight the drugs to them. 

For everyone's information the pharmacy is Walgreens in Pennsylvania and their number is 888-347-3416.  I am on the list as someone who is able to talk to them as is dad without needing mom on the phone.  If we would have been thinking, we would have added everyone else - sorry about that. 

Mom Called Today

Mom called me at work to ask about a setting for Dad to do on the Rife machine.  She told me that Dr. Jeffries called late yesterday (5:00 PM) to tell her that they did find cancer cells in the fluid they drained off on Friday.  I asked if she indicated anything specific about the cells and she said no.  She said Dr. Jeffries said last week she thought they were from the bronchial tube area.  Dr. Jeffries told Mom to start the chemo pill as soon as it arrives.  Mom was a little bummed about the results but said they were thinking that's what we would find.  She said she was tired again today but thought it could be from using the Rife machine yesterday.

Talked to Mom & Dad today

Hi,

I called the house today after work to check in.  Both Dad and Mom sounded really good.  Dad felt that Moms coughing today was less than yesterday.  She didn't really have any coughing spells during the night.  She has some coughing when she goes from laying down to sitting/standing up.  But it isn't lasting as long as it did a couple of days ago.  They are continuing with the Frankincense applications.  I encouraged her to eat a lot of fruits and vegetables and that the gal I spoke with on Saturday said a good way to up your intake is to juice them.  So we talked about some of the f/v she could juice.  Carla, she brought up the eggplant and we talked about juicing that too.

So in a nutshell, she sounded 100 times better and more optimistic than when I spoke to her on Friday. 

Monday, Sept 9 - Bonnie spoke to Dr Jeffires nurse Brandi this morning.
Here are the questions put forth:

1.Bonnie has experienced memory issues with mom - she answers a question one way 1 day when I talk to her  and a different way 2 days when I ask her the same question..
 ThePet Scan showed NO images on the brain or neck.  If there were images they would do an MRI to do further dectections of what  those images might be.  So her memory loss may be just anxiety or alzheimers starting.  I assume just anxiety.

2.How often will they need to drain the lung lining? 
Mom will need to monitor this  with her chect feeling full and or  shortnes of breath.  If she expereinces this she is to call in and they will set up an appointmnet for her.

3.  How fast do the chemo pills start working to stop the cancer cells from producing fluids? 
It takes 8- 12 weeks for them to start working.

I will call mom and and dad over lunch and give them this information.

I have also ordered from Amazon a BedWedge for mom .  I actually order 2 one iwth a 7.5inch height and one with a 12 inch height.  I wasn't sure which size would be the most confortable for her.  We talked about that lasst Wednesday morning when I was there.  This could possibly help the coughing spells at night.  They will be there Tuesday, September 10.

Last week Dr Jeffries said Mom could conitnue on her regualr routines and they shoudl plan to go to Arizona this winter.  I hope they still plan to do that.

Love to all,

Bonnie

Time in Iowa This Weekend

It was good to be in Iowa Friday night and Saturday.  We left on Saturday around 2:00.  I think it was good we weren't there the entire weekend - Mom was tired.  She was tired on Friday when we first saw her.  I set her up on the Rife machine right away.  She said it took away her nauseous stomach which allowed her to eat well Friday evening.  She can only do the Rife machine every 3rd day so her body has time to detox from it.  She did good Friday evening.  Saturday morning as Dad said, "she had the blues".  She said mornings are more difficult because she starts thinking about how this will all go.  Paul was over and we all sat around the table and talked about it a little.  She did good again until we left in the afternoon.  She was tired by then.  Bill and I are beginning to process the fact that we hope the chemo pill kicks in quickly and does its job but, if it doesn't, we are beginning the grieving stages of having to say good-bye.  That makes me sad.  I'm not saying her death is imminent but will probably be sooner than I hoped.  :(

Yesterday, Sunday the 8th

I spoke to Mom and Dad yesterday, had a nice little conversation.
We talked about them not going to Arizona in a few months and I told them that Sam & Meghan had offered that if mom feels up to it, they are welcome to come and stay with them for a few weeks.  Sam thought the dryer air would probably be helpful to her.  Mom was so/so on the idea, would depend and Dad just said that would probably not be an option.  Dad also said that Mom had another bad coughing spell in the very early hours of the morning on Sunday, not as bad as the one on Friday, but pretty bad. 
Will see how this all goes over the next couple weeks once she has been on the chemo pills for a bit.

Friday, September 6

I called mom and dad last night and only talked to mom.  She coughed quite a bit on the phone.  Worse than I have heard her in a while.

I mentioned that September was busy for us, but I would try to schedule some time in October to come for a visit.  She told me she understood that we all had busy lives and she had no expectation that we would be dropping everything to come there.

Just thought I'd share that to give you all a bit of freedom as we consider the pressures of families, work and our own present circumstances.

It is nice to know she is giving us freedom to enter and exit as we can.

Beginnings

This purpose of this space is to be a place where we can update each other about mom and dad and their journey through this illness.  I thought it might be nice to update this with a brief summary about our conversations with them or any news that we might have about upcoming appointments etc.

Each of us will be able to post to this blog and if I set it up correctly receive an email when something new is created.  I think it is fine to invite our children to visit here as well for updates.  However, I do believe this blog should be kept only to our immediate family and would ask that the URL not be shared with anyone outside of that.

If we want an opportunity to have others view updates on mom then I believe we should set up a Caring Bridge page.  It would be great if this could be kept a safe place to share things strictly for our family to know.

Hopefully we can put it to good use.

Karen