Slight change to the service schedule

Everything previously posted is correct, except the burial.  That will be done at 11 am Thursday for immediate family only.

So.....
Wednesday
1 pm Visitation
2 pm Funeral service
3 pm lunch in the fellowship hall

Thursday
11 am Internment for immediate family only.

Addresses

First Baptist Church of Lutz
18116 US-41, Lutz, FL 33549

Trinity Memorial Gardens
Memorial Dr, Trinity, FL 34655

Additionally, because people have asked:

In lieu of flowers, we request memorial contributions be made to Gulfside Hospice, or the children's charity of your choice. 

Cards for Kim can be sent to
2502 Chateau Drive
Lutz, FL 33559

Cards for Kelly can be sent to
4134 Muriel Place
Tampa, FL 33614

Service info

Wednesday, March 2nd
1pm visitation
2 pm funeral
Church reception
Grave side service

Everything is at First Baptist Church of Lutz except the burial which we be at Trinity Memorial.

I will provide addresses tomorrow.

She's gone home to Daddy

BRIEF:  mom passed at 5:45 pm yesterday.

She's finally free of the body that continued to betray her more and more each passing day.  She's returned to a whole, instead of being the half left behind when daddy died.

Mom passed yesterday evening about 5:45 pm.

The previous night had been especially bad with her unable to get enough air and panicking. I'm so glad that is over for her.

Several friends/family were able to visit earlier yesterday.

Unfortunately, that evening, I had to run out for a quick errand, and upon my return she was gone.  It must have happened right before I walked in as she was still warm.

She was physically alone when she died.  But I have to believe spiritually she was surrounded.  In the last few days she often mentioned Daddy being there among others who have left us.

We are trying to get services scheduled for Wednesday or Thursday afternoon.  I will post when those are finalized.

Thank you to all who followed along, prayed, sent positive energy, and loved us through this difficult time.  We are overwhelmed with offers of help and feel so incredibly fortunate.

What day is it?

BRIEF:  A little more of a rapid decline the last couple of days.

Mom seems to be declining more rapidly.  But she is accepting it with grace.  She has been fighting the meds for so long, so that she could be mindful, but it was making things so much worse...the trying to get her breath and the overwhelming panic she would feel.  She was waiting to the point that she would take anything to make it stop.

Today, I convinced her that we are going to do the meds on a schedule that keeps her out of that major panic attack mode, and we will play with the dosages to give her the smallest amount that keeps her from going there.  With that in play, she has had really good deep sleep.  At one point I couldn't wake her (though I was being gentle about it).  Then about 10 minutes later she coughed herself awake.  The cough sounds really bad.  But, she has said the sleep has been really good, and peaceful.  She's having those dreams where what's in the dream is related to what's going on around her.  Bay News 9 has been a big influence.  I'm hearing the dream version of the news. :-)

Later this evening. I was sitting in the other room and she made this really scary sound almost like she was swallowing her tongue or something.  I ran in there and she was choking out a coughing fit, she said she was okay, but I had to stay for a bit to be convinced.

I'm so proud of her.  She's always been a fighter.  And she knows how to handle a great deal of pain. But she's having to let go of the fight response, and the independence, and pride.  And it's happening, in steps, but it is happening.  In a way it is softening her and reminding me of the way she was when Kim and I were kids.  Obviously, bittersweet, but I'll take it!  Not to say that she had grown hard, but fighting all her pain and then losing Daddy did a real number on her.  I'm just so thankful for having this time with my mom.

Hospice Doctor visit update

BRIEF:  Not quite as out of it today.  Dr estimates we have weeks not days, or months, she said 2 months would be extremely generous.

The doctor's visit was really good.  She was wonderful. She went through all of mom's medication and got rid of some things, and changed some things to try to control the can't-catch-her-breath issue and the anxiety that comes with it.  She gave me some helpful ways to care for mom without hurting myself or her.

Mom was more clearheaded while the doctor was here.  The doctor said from a neuro/mind perspective she is top notch and could go on for a long time.  But the body will start shutting down if she isn't drinking enough.  Also, if she isn't eating it will be problematic.  She said that the belly distention is mostly gas, not fluid.  But, she does have quite a bit of fluid on the lungs again.  She said the wheezing isn't in her lungs, it's on the outside around the lungs (that was very encouraging news for me - the wheezing made me feel like she wasn't going to see the end of the week).  She said she isn't God so she obviously can't say the day mom will die.  But, based on her experience and what she is seeing, mom has weeks, not days.  She said 2 months would be extremely generous.

Obviously, it's not as much time as we were told originally. But, after the way this week as been, I think this has been good news.

Monday update

BRIEF:  Things are progressing.  Today the nurse started her on morphine.  Wheezing throughout her chest.  The doctor will be here tomorrow afternoon.

Mom has been out of it most of the day because of the meds she was taking.  Towards this evening, when I asked if she wanted the pain meds or the Xanax, she said no to both, she was sick of being so out of it and wanted to try to handle the pain.  She did pretty good, using the nebulizer to handle the shortness of breath and just pushing through the pain (years of experience).  She became more coherent as the evening went on.

The nurse came at 8pm and in addition to the other stuff, listened to her chest in multiple areas front and back.  When she called the doctor to review mom's chart, she told him the wheezing and congestion were all over. The doctor started her on the morphine to help her breathe.  She can still have the dilauded and the Xanax, though she hasn't chosen to, since early today.  She did decide to have the morphine after going to the bathroom and back to the bed (using the wheel chair).  That's when she gets really out of breath and panicky.  She has said the out of it feeling from the morphine is worth it for the relief of the shortness of breath.

She went about 24 hours without eating, which had me a little concerned (in addition to the other symptoms), but she finally had a few slices of an apple and a quarter piece of cheese.  I keep asking her if she wants to eat something, and other than that tiny amount, she has said no.

I abhor grammatical errors, but am too tired to care at the moment.  Please forgive any.

Sunday update

BRIEF:  Cough and wheezing.  A little disoriented likely from the meds.

Last night, mom coughed the entire night.  It was a wet sounding cough.  She took some robitussin and mucinex along with her regular meds this morning and was finally able to get some sleep. Though, she is wheezing as she sleeps.

Today she has said she knows that she is out of it.  But prefers it to the breathing issues.  She would like to be a little less out of it if she can and still keep the breathing in control. I'm doing my best to find a balance.

When she woke up she said she had all these thoughts in her head that she knew were wrong.  Someone was missing (I told her that was probably from the ID channel being on at all times).  She said that someone was coming to spend the night with us, but it was me as me and me as the other person that was spending the night, but that there was another person that she could feel was here (I told her it was probably Daddy).  She definitely knows that none of that is real.  She also knows she is out of it. But I remember Daddy getting disoriented, too.

There is a chart in the hospice book that tries to give you an idea of time left based on behaviors/things that are happening.  She has stuff in all three columns so it is impossible to know.

When she is awake for a few minutes, she keeps saying she needs to call people and get a shower, and then falls right back to sleep.  Please forgive us for not calling.  She really wants to call people, but never has the energy (talking gets her out of breath).  And, I am just too exhausted, this blog is the best I can do.

Thanks for understanding!

Saturday update

BRIEF:  Things are moving along, but she's comfortable.

We have had a bumpy few days.  Mostly shortness of breath, and the panic that comes along with it.

The hospice nurse came on Thursday and spent nearly 3 hours with us.  She adjusted and added some medications.  At first, mom wanted to stay with her pain meds and she was still struggling to get her breath, and getting scared.  I called and they told me the change of pain meds was also to help with the breathing.  Since she switched to the new pain meds, things have been better.  They also increased her Xanax for the panic.  Yesterday she couldn't believe how much better she felt. Still not ready to go for a walk, but definitely comfortable.

Kim and Adam came and moved the hospital bed into her room.  She is sleeping there and I am in her bed.

She does have a raspy cough that is disconcerting.  The hospice doctor is coming on Tuesday so, assuming nothing else changes, we can discuss that with her then.

Hospice is very shorthanded, but they have been surprisingly responsive and very helpful.  I'm relieved for that.

I apologize that I haven't been able to call people.  I am trying to run a business and take care of mom at the same time.  If you know someone who wants to be updated, but doesn't use computers, please call and fill them in.  That would be a BIG help.

Monday update

BRIEF:  Nausea and cramping.  Hospice had us open the "comfort box" to give her anti nausea meds.

It's been a rough couple of days for mom.  She just keeps filling up with fluid.  Her nausea is pretty bad, but thankfully she hasn't vomited so far.  I just gave her the first pill from the "comfort box," the hospice nurse had me give it to her and will check back in a couple of hours to see if it is working.  Mom's stomach is hurting, along with her ribs, and normal back stuff, including spasms.  She had a bad migraine (are there any good migraines?) yesterday.  We tried having her sleep in the hospital bed again, but it wasn't comfortable.for her.  I am going to start sleeping in her room on an air mattress to keep up with her during the night.

I know that some of you still want to visit.  But, she feels pretty awful and not at all like having company.  She said she doesn't want people to come to watch her sleep, or try to get comfortable.  I told her that she needs to consider the people who haven't been by yet.  To allow them to at least stop in for 2 minutes to hug her neck and tell her they love her.  It's likely only going to get worse.

I wish there was something wonderful I could pass on, but right now things aren't very good. We are also trying to find out from hospice, sort of what to expect.  If she does start vomiting and having breathing issues, is she going to aspirate (or whatever it is when you choke on your on vomit).  Sorry for the graphics.  Just trying to be realistic.  She wants to know if her stomach is going to continue expanding until it explodes.  The nurse I just spoke with said as the fluid continues to develop it will continue to go to the stomach and soft tissue areas.

There is part of me that would like to say she can't go on like this.  However, I'm afraid that she can continue like this for quite a while.  Her body has been almost as stubborn as she is in its tenacity to survive.  I just hope we can get her comfortable.

Saturday update

BRIEF:  Mom's extremely distended and feels pretty awful today.

Mom's stomach, and chest are filling back up with fluid.  She is extremely distended and pretty miserable.  She doesn't feel like eating anything and she's having acid reflux.

She doesn't want to have it drained again because it is just prolonging the inevitable.  Also, she was very sore last time and it was not long before it filled up again.

She's having pain in her back (as usual), her ribs, her stomach and chest.

Please send your positive energy her way.

Wednesday Update

BRIEF:  Nothing new to report.

Mom's last few days have been about the same.  Her appetite has been slightly better today.  She had a full breakfast and lunch.

She's also had a lot of visitors today.  Her brother, the hospice nurse, the hospice social worker, and a friend, all back to back.  So, she's pretty wiped out and resting now, but I think it was good for her.

I am wondering if it would be equally good for her to not have any visitors tomorrow.  In fact, no one should visit tomorrow as the house is being pressure washed and it will have the dogs in an uproar, along with the noise that all the water will make, too.  Anyway, my point was to give her a day off from visitors after a day of a few in a row. We will see how she is in the morning and if that looks like the thing to do, I will let you know.

Although, I know she wants to be able to see everyone, so if there is a day of rest that ends up being the only time you can come we can definitely see if she is up to it.

Sorry, I'm rambling.  I'm pretty wiped, too I guess.

Info for visitors

BRIEF:  Mom is about the same.  Ignore the dog(s).  Please be patient on trying to see mom, some days she is just not up to it.

Mom is about the same.

I am staying with her along with my dog Scoutt Mosier.  He is a great dog, but is very unsure with new people (even if you come several times you will likely get the same reaction).  He will bark/growl and carry on like he's going to chew your arm off.  He is only 25 lbs and has never bitten anyone.

As long as you do not look at him, talk to him, or try to touch him, all will be fine.  We will put him behind a doggy gate.  Otherwise he may sniff around you, but continue to ignore him and all will be fine.

I apologize for the inconvenience, but under the circumstances the emotional support he provides is necessary.

Also, this week, for a few days my big dog Hamell will be here as Glen (my husband) will be covering overnight visits for our pet sitting and dog training business.  Hamell is socialized and may bark until you come in and then will settle.

I appreciate your cooperation.  If you have a fear of dogs, if you let me know just before you arrive, I can sit in closed room with Scoutt so you will not have to see him.  Just let me know.  I don't want mom to miss out on seeing anyone due to my dog.

Although mom wants to see everyone, some days she just sleeps non-stop and isn't up to company.  Please be patient.

Still sore

BRIEF:  Still sore. Not going to have the brain MRI or follow up.

Mom is still pretty sore from them draining the fluid.  And, it doesn't seem that they drained much of it as she is still distended.

She decided this morning to cancel the brain MRI and follow up appointment with Dr McDonough (oncologist).

She doesn't want to spend the time she has left going to doctors, etc.  After all she went through at the hospital, then to feel like she does, she's done.

Based on how the fluid is increasing, and how tired she is, I would be surprised if she makes it 6 months.  I'm not a doctor, but I've watched a couple of people take this journey, and that's just my not-so-educated guess.  I'm just hopeful that she can go somewhat peacefully.

Mom is home

BRIEF:  Mom is home and hospice is being brought in.  Before leaving the hospital, the fluid was drained.  She is sore.

Mom was released from the hospital at about 6pm.  Before doing so, the fluid was drained.  The doctor who did the draining was showing it to mom on a TV screen while doing it. There was a lot of fluid around the liver and gall bladder, but there was less around the lung than there had been before.  He also noticed that she has a stone in her gall bladder.

Today her insides are sore from all the activity and she is tired and resting.  Happy to be in her own bed (for the time being).  Hospice had the company they contract with bring out new oxygen tanks and a hospital bed.  I'm hoping she will never have to use it.  It looks like something from circa 1972.  However, it gives her a way to sit up in bed if she is having a lot of trouble breathing.  She also has a wedge for her bed that we can try first.

The hospice nurse will be her at 3pm today to officially admit her.

Hospital Day 2

BRIEF:  Mom had a rough night.  But, she is getting the fluid drained today and may even get to come home tonight.  We have decided to engage in-home hospice at this point.

Mom was given sleeping pills and anti-anxiety medication, in addition to her regular meds last night.  Additionally, she was given the pre-colonscopy cocktail to get her cleaned out.  Not sure who's bright idea this combination was, but it made for a bad night.

Today, around midday she will be having the fluid drained.  If all goes according to plan, she may get to come home today.

We have decided to move forward with in-home hospice.  They will be delivering a hospital bed, and other tools today.  The hospital bed is primarily to help her breathing by having her upper body elevated.

Hopefully, she will come home feeling significantly better without all that excess baggage.  But, it's likely to return, we just want it to not happen quickly.  When she was in at Christmas time they had drained everything and it took about a month to return, although it had gotten worse this time before she was ready to go in the hospital.  Not sure how this is going to work going forward, but we are taking one day at a time.

With all that has been going on, I would think Friday would be the absolute earliest that she would be up to visitors.  We hope you understand.  When you text to ask about visiting, please let me know who you are, I don't have everyone's number in my phone.  Thanks!

Not the greatest of news...

BRIEF:  Mom has fluid building up in her abdomen, in her lung, between her lungs, and all around her liver.  Hospital doctor says there is no point in doing anything because of her decision not to fight the cancer.  Hospice should come in and manage things.  It seems that things are moving along faster than we had hoped.  PS - Pulmonary doctor disagrees, they will be tapping the belly tomorrow and draining everything.  Hospice may be on hold.

Mom didn't get admitted until about noon today, She is in room 284.  At this point she is pretty exhausted from being up all night in the ER. While waiting in the ER she had chest and abdomen X-rays, and a CT scan. They have found that there is fluid building up pretty much everywhere: on the lung, between the lungs, in the abdomen, around the liver, and her bowels are severely backed up.

The hospital doctor told her with her decision to let it take it's course, there really isn't a point to do anything about it.  I have to believe that if they were to drain the fluid it would just build back up again, and I know she doesn't want to be going back and forth to the hospital. He said that he would have the hospice person come and talk to her tomorrow to start using them.  He said that they will be able to help her with her nausea and also her breathing.  She told him she doesn't want to be gasping for air (although she is DNR).  He said that hospice can help with that.  She told him that her oncologist wanted her to have an MRI of her brain because if it is the primary and is causing her pain, they can radiate as palliative care. I told her she should ask to see her oncologist before she leaves there.

Her pulmonary doctor will be by in the morning and we will see what he says. All in all, it appears that the process is going a lot faster than we had hoped.  She says she's okay with everything.

If all her doctors are in agreement with the hospital doctor, she will probably come home tomorrow.

I know many of you want to visit,  Based on how she has been, I would say the best time to come would be around 3 or 4pm on any given day, though it may be 2pm before she will know if she is up for visitors.  I ask that you check in with us before visiting. Probably the best way would be to text me at 813.505.3363.

Not trying to be rude, but please come to the blog for updates instead of texting me.  Otherwise, I have to keep repeating myself which takes me away from having as much time with my mom as possible.

Dr. Shah (pulmonary) came to talk to mom while I have been writing this.  He has a different attitude about what to do.  He said looking at her X-rays her bowels are really packed and the fluid is everywhere.  He is going to have them do a stomach tap tomorrow and have her take the pre-colonoscopy meds to get her cleaned out and then drain off the fluid. He wants her to be able to live the best life she can while she can. He is also going to talk to the oncologist about what's going on and find out his thoughts.

I will update here as soon as we know.  Thanks for your thoughts and your prayers, and cooperation and patience, and love and everything!!!!

Back to the hospital

We have come to the hospital for mom to see the pulmonary doctor.  She wasn't able to make it to her appointment.  The home health nurse was there today and said she's wheezy, and her stomach is very distended.  The nurse thought that could be fluid as well.  We are hoping that she can get the brain MRI while here, since she didn't make those appointments either.

I will post the room once she's admitted.

Rescheduled appointments

Hi all.

BRIEF:  new dates for MRI and follow up with oncologist, February 8th and 9th respectively.

I have come to stay with mom for the duration.  The first couple of days I was here she was pretty bad.  Slept almost  48 hours straight.  Really weak and out of breath.  Her voice was really weak.  We both were scared this was a rapid course towards the inevitable.  

Fortunately, on the third day she started feeling a little better. The mornings are pretty bad, she's weak, tired, out of breath, bloated, and continuous flares from the ulcerative colitis.  The bloating is pretty severe.  She looks like she's pregnant with twins.  It starts to lessen later in the day.  She gets a little bit of strength and can sit up in bed, or sit in her chair.  Her voice is markedly better.

Regardless, she woke up this morning really bloated and hurting, again.  She's taking the stuff that the GI doctor prescribed, as well as over the counter stuff, but it just doesn't want to let up.  So, she asked me to reschedule the MRI and follow up appointment.  We are now set for February 8th for the MRI and the 9th for the results from the oncologist. Both are late in the day, so we are hopeful she can make it. 

Part of the difficulty with the MRI is she has to lay flat (which has always been hard on her back), but the flatter laying down that she gets the more she feels like she can't get her breath and panics.  She will have to be still for the period of time it takes to get through the MRI.

She loves seeing visitor but it does take a lot out of her and she doesn't want to offend anyone so she won't say when enough is enough.  I, on the other hand, have no problem telling people that's enough and she needs to rest.  So, please bear with my bulldog-at-the-gate protectiveness. : - )

Again, if you would like to visit, please call (813.907.1116), or text (813.505.3363) ahead of time, to see if she is up to it.  

Thanks for all the prayers and thoughts.  She is appreciative and blessed to have such great friends and family.  Kim and I appreciate it, too!

Contact information for mom

I've had some people asking for contact info.  You can call mom at 813.907.1116, email at mooneyhan108@aol.com, send cards to 3804 Bramblewood Blvd, Land O Lakes, FL 34639

Welcome to this blog - thank you for caring!

Hi all.

This is Kelly, Jerry's daughter.  I will be posting to keep everyone informed.  In each post I will put a brief summary at the top, then give details below.  I know that most, if not all of you will want to send your love and prayers to mom.  PLEASE SEND SUPPORTIVE COMMENTS TO MOM'S EMAIL:  MOONEYHAN108@AOL.COM.  Please use the comment section ONLY for questions.  I will answer as soon as possible.  You will see this paragraph repeated at the top of each post for newcomers.  Please feel free to share.

BRIEF SUMMARY:  Mom has been diagnosed with Stage 4 Adenocarcinoma (cancer) with an undetermined originating sight that has metastisized to 4 lymph nodes in various locations.  She will be having a brain MRI on 1/28 with results from the oncologist on 2/2.  With what we currently know, the oncologist said the average life expectancy is 6 months.

FYI - the title of the blog was chosen by mom - it's in reference to going home to heaven to be with Daddy.

Thank you for keeping up with what is going on with mom.  We appreciate all the caring people.
Please be patient with us as there is a lot going on.  We will do our best to provide you with up to date information as quickly as possible.

Although we appreciate the calls and the texts, we are not always in a position to get back to people quickly.  This blog should be the place you go for the most current information.  Please forgive us if you find this to be impersonal.  We are just trying to spend the time we have left with mom, with mom.

We also ask if you would like to visit, please call ahead of time.  Mom is having times that she is weak and not able to socialize, not to mention doctor's appointments.  At this time she tends to be better later in the day.

Okay, so here is the timeline of what has gone on and what we know so far....

On 12/19/15 Kim took mom to the hospital as she was very weak, dealing with her ulcerative colitis and having trouble breathing.  They admitted her, they found she had pneumonia and fluid on her lung.  They drained over a liter of fluid from her lung, they saw a high level of white blood cells and sent it off for testing.  She was feeling better with the fluid off. Still trying to get the breathing a little easier, it had her panicked because she felt she couldn't get enough air. They have given her Xanax to help with that panic, they also have her doing nebulizer treatments and on permanent oxygen.

At the hospital she was seeing (among others) Dr Shah (pulmonary).  Dr Shah came to see her every day to update her and see how she was feeling.  On Christmas day, he came to tell her that some of the cells in the fluid they removed were cancer cells.  They would have to send off stains to be tested to determine where the cancer was coming from.  I spoke to Dr. Shah and he explained that it is an adenocarcinoma, that with it being in that fluid, it has metastisized, and likely Stage 4.  They didn't find anything in the first set of stains and had to send it for further studies.  The results would be available in 2-3 weeks.

At this point mom was wanting to be home in her own bed with Munchkin (her Yorkie, that had stayed with Glen).  So she managed to get clearance to go home, and Kim took her home on 12/29/16.

On 1/5/16 mom went to Dr Gilbert (GI) for follow up on the ulcerative colitis.  He gave her a couple of new prescriptions.  He supposed the cancer had started in the lungs.

I took mom to see Dr Shah on 1/6/16.  The stains still didn't indicate the originating site, but it did rule out the lungs.  Additionally, because of the ulcerative colitis, she had just had a colonoscopy and an endoscopy, so that ruled out those locations.  She'd also recently had a mammogram, so breast was out as well.  He ordered a PET scan, and after discussing options let Dr McDonough (oncologist) know that we would be coming to see him.  He also ordered a chest X-ray to check for more fluid.

Kim took mom to see Dr Ina (PCP), he noticed a swollen lymph node under her arm.

I took mom to have her PET scan on 1/11/16.

I took mom and Kim met us, to see Dr McDonough on 1/19/16.  I recorded the conversation, so the majority of this is verbatim, just summarizing where it makes sense.

Dr McDonough:  From the fluid testing it was negative for breast, lung, and colon.  Positive for adenocarcinoma.

From the PET scan:  Small amount of fluid remaining on the right side sort of in a pocket.  No mass in either lung.  10 milimeter lymph node around normal size, but more active than it should be on the PET scan, located in the center of the chest just below the trachea where it splits in two, in an area called the corina. In the left under arm a spot a little over an inch in size, most active place in the body; that is not typically a source or a starting point for a cancer, so that part was unusual.  Down in the pelvis, so in between the pelvic bones along the right side wall, so just inside those pelvic bones there is another mass. Final spot they see is on the opposite side of the pelvis along the iliac blood vessels.

The frustrating thing is that none are clearcut to be the primary source of cancer, and none of these locations fit with a common primary source of the cancer.  Because really all four are lymph nodes and none the customary source for an adenocarcinoma; they're a destination, not a starting place.

None of the likely sources (lung, breast, colon, liver, pancreas, ovaries, uterus) lit up to be the likely primary on the PET scan.  Cancer of unknown primary is not very common.

The spread of disease, the distribution of where these things are located fits with a Stage 4 cancer because, again, none of these areas are the primary source.

Mom:  Is any of it in my head?

Dr McDonough:  The PET scan doesn't show the head well, it doesn't show the brain well because the whole brain uses sugar and you can't differentiate parts from each other.

[PET scans use sugar and where it travels to in the body to determine cancer locations, apparently the brain already has sugar.  There may also be areas of cancer that are too microscopic at the time of the PET scan to show up on the results]

[there was some conversation about whether or not they could do a brain MRI with mom's rods in her spine, or if they would have to settle for a CAT scan, which isn't as sensitive.  They settled on MRI]

Kelly:  Have we in essence eliminated liver, kidneys, bladder, other organs?

Dr McDonough:  None of those areas have been identified on the PET scan, but testing has limits.  If this cancer started out microscopic and immediately entered the blood stream, which some seem to do, it could still be in its microscopic form in one of those organs, it's below the level of detection.

Mom:  Could it be a blood cancer?

Dr McDonough:  Not a blood cancer, those are lymphomas and lukemias.

Kelly:  What about bones, could it be in the bones?

Dr McDonough:  So that's possible but they don't see signs of it involving the bones right now.

Mom:  If it was in my spine, would they be able to see it on the PET scan? [with the rods surrounding her spine]

Dr McDonough:  Yes, because of the way a PET scan works.

Primary approach to Stage 4 cancers would be chemo.

Mom:  No

Dr McDonough:  Okay, I'm just telling you that's just the main focus of treatment for this.  In the absence of treating with chemo, there's really not a benefit to surgery, not a benefit to radiation, unless the pain you're having here (pelvis) is different from the pain you had before, that area could be targeted for the sake of trying to relieve pain.  Is this pain any different?

Mom:  A little more so, but could be.

Kelly:  Considering what we do know at this point and considering the fact that she's not wanting to do any sort of treatment, do we have any idea of her life expectancy?

Dr McDonough:  These are all estimates so don't let anyone give you a time limit.  I don't know what it is, you don't know what it is.  The averages are about 6 months.  Certainly anything you've been planning to do, do it.

Mom:  What about them (Kim and me being predisposed) that's what I'm mostly concerned about this type of cancer.

Dr McDonough:  So it's a good question.  Coming on at your age when you're having this, it's pretty unlikely to have a genetic connection.

Kelly:  Could it continue to show up in new places and cause additional pain or function issues?

Dr McDonough:  Possible, both are possible.  We're getting a look at the brain.  If the brain did show something, that should have radiation.  If we found a spot within the brain, I'm saying.

Mom:  Can you tell me why to do the radiation?

Dr McDonough:  Primarily for quality of life, of trying to prevent stroke-like symptoms.  So when a cancer is growing within the brain it acts a lot like a stroke, if you begin to press on important structures, you could lose the function of your arm or leg, you could lose the ability to speak, those sorts of things.  So if we find a cancer in the brain we pretty universally will do radiation.

Kelly:  and would you do that mom?  or you don't know yet?

Mom:  I don't know yet.

Kelly:  That's fair, that's fair

Dr McDonough:  It's totally up to you, but would you like the information?

Mom/Kelly:  Yes

Kelly:  What would be the side effects?

Mom: (simultaneously) It would be something I would definitely consider.

Dr McDonough:  The chief one is fatigue.  In the long term there could be memory effects months down the road.

Mom:  That's what I'm worried about.

Dr McDonough:  That's usually not in the short-term, it's one later on, but it's a real one.

END OF APPOINTMENT

So she has a follow up with Dr Shah on 1/27/16, the brain MRI is scheduled for 1/28/16, and we are back at Dr McDonough for the MRI results on 2/2/16.

If anything comes up between now and then, I will post it here.  Otherwise I will let you know how each of the appointments go.