Everyday Jace starts his day by asking "does Nanny have to work today?"  He is not accustomed the fact that she no longer works.  His next question is, "Does Nanny feel better today?"  It is almost heartbreaking to hear his wee-little voice ask about his Nanny's health.  At the ripe age of 3, I know he really doesn't understand. 

Mom had her first treatment today and since they told her she would probably be sick about 24 hours after the treatments.  So, since Walker had baseball, she opted to allow Jace to come to her house as we've done in recent weeks.  Either way, I doubt that this can continue for a long long time. 

She apparently had played enough and needed to rest so she asked Jace to turn on the oxygen machine and bring her the hoses.  He did.  She sat for a short time in the chair, watching him play with his blocks. 

She asked him to come sit in her lap for a little while and snuggle.  He looked at her and quickly responded, "not til you take that tang outta ya nose".  Mom said she had to take it out too, he wasn't giving up any snuggle time until she removed the oxygen tubing.

See, I told you, he totally didn't understand.

This is part of Portrait of a Mother hosted by ParentBloggers.com.

This is precious.  My mom and I never got along very well when I was young (the product of a daddy's girl, I was a devil).  She has always been rock solid for me though, I knew no matter what happened, I could go home to my mom.  And, trust me, there were a few times that I was embarrassed to call her and ask to come home, but I knew I could, just had to get over the ego.  She is sick now.  I haven't emailed anyone about it as for some reason, writing it down has made it so much more real.  However, the time has come for me to face reality.  The prognosis is not good. 

How it all happened.  She had endometrial cancer last summer, soon after a hysterectomy that included removing the lymph nodes in her pelvis, the cancer returned. She had radiation for six weeks.  Never missed a day of work the entire six weeks.  They didn't treat her with chemotherapy because that doctor felt sure the cancer was contained.  He was wrong.  Less than 6 months after her last radiation treatment, we found out she has endometrial cancer in her lungs.  The diagnosis was four large tumors of endometrial cancer in her lungs with small spots peppered all over her right lung. The fluid was building up fast and it too is malignant.  After a pet scan, we learned that the cancer is now spread in her pelvis even further and has now managed to spread to her adrenal gland.

For now, there is no cure, the chemotherapy that will all know is so hard on the body, can only hope to control the cancer so that it doesn't spread.  She is very weak, losing her appetite and is using oxygen a lot of the day and all night.  She starts treatments on Monday.  The plan is to have one treatment every three weeks.  After four treatments (or 12 weeks), she will have another pet scan to re-evaluate the situation.

I'm doing my best to spend as much time with her as possible.  She keeps telling me she doesn't need a baby sitter and for me to get on about running the daycare and taking care of the boys.  Sometime this week a member of our family who is too outspoken for our liking made the statement that she "wouldn't have the chemotherapy". Mom's response to that was this:  "You don't know until it’s you, what you will do.  If it were you and you took one look at those two little boys right there, you would know that there was only one decision to make.  The happiest times of my life right now are when those boys are here."

Now, if that's not enough to make you feel like you need to just pack your things and move in with her, nothing ever will.  Of course, that's not an option right now, but I'm not saying it won't happen.  Mom has a lot of support and says that she is not afraid.  Yet, when she is really weak and having a bad day, she wants to hold my hand.  I can't keep her from being afraid, after all, she is the mommy, she is suppose to keep me from being afraid, right?  But, as the two of us lay in her bed yesterday after an afternoon nap, holding hands, just talking about stuff, I felt, for one fleeing moment, like the mommy. 

I have no clue how to nurse an adult.  I have no clue how to figure out what she needs most at any given moment.  I have no idea how to make decisions for her.  To be honest, I don't know if I ever will.

*Photos were taken from an email that I received.  I have no idea who gets the credit for them, but whoever it is, here's to you.

Today was the day.  We've waited almost a week to see the oncologist.  And the news?  Well, it was just as I expected but came as quite a surprise to my mom.  What do I mean?  Well, one oncologist had already told me that endometrial cancer, especially once it has metastasized is not curable.  It is controllable in some cases, but not curable ever. 

The plan is simple, she will go back to see the oncologist next Thursday with her final decision.  She plans to have chemo and they did the necessary blood work today to get her started.  However, the oncologist today wanted her to think about it until next week.  She will start treatments the following Monday, which if my calculations are correct, that's April 28.  She will have another treatment 3 weeks later.  From there they will do another PET scan and see if they drugs that the doctor has chosen are working.  If not, he will change them or she can decide to quit.  After that, if she chooses to continue, she will have 3 more sessions and another PET Scan.  At that time, they will merely watch her through catscans, pain and PET Scans to see if and when and where the cancer is continuing to grow.  Then it is a game of cat and mouse from there.

Mom seemed to be in pretty good spirits.  I didn't tell her that I already  knew part of what the doctor said.  I just let her mull it over and think about what to do.  She was sick this morning, then acted like she felt better during the day but then this afternoon she was sick again.  He did give her some medication for pain, nausea, appetite (she's lost 15 pounds in the last 2 weeks), to help her sleep and for anxiety.  So, we will see tomorrow how she feels.  That's the best I can think of right now is to take it day by day and see how she feels each day.  I will make no plans other than the ones that are absolutely necessary so that each day, depending on her condition, I can work or stay with her.  That's just how it is going to be.  I simply pray that the daycare can sustain itself with all this going on. 

And, the spot of happiness...just check out these kiddos.  I posted some picture that were taken with my camera of this but my batteries went dead and I didn't get good ones like these.  Also, the other kid is Walker's bestest-hyper-active-gone-bonkers-screaming-yelling-running-acting-a-fool best friend.  They think they are special because they both have last names for their first name.  Walker's being Walker of course and the other child's name is Jackson.  These boys are crazy about one another.  You can see it in the picture.

I must tell you that the long haired coach on the far right and the woman (husband and wife are the main coaches.  He is the wife to one of my employees who by all standards has managed to be the best teacher in the center in just four months time.  So, knowing that, I have no clue why it surprised me that her brother was exactly the same.  This couple have been the greatest thing to happen to us in the area of our first year of teeball.  They are simply wonderful.)

Ok, that said, just pray.  Please.

UPDATE AT THE BOTTOM IF YOU SIMPLY CAN'T READ THE ENTIRE SAGA.

I've never kept a diary or journal.  When I started this blog, I loved the fact that I was able to go back and read about my babies and whatnot.  And now, with my mom sick, my state of mind is pretty cluttered.  I'm documenting the bits and pieces that I can stand to type out so that one day, if it feels right, I can go back and read it.  I've been no stranger to documenting the fights I've had with my mom or the fact that from a child's perspective, my mom is the greatest Grammy in the world.  So, now, the hardest part ever, I'm going to document as much as possible, just in case.

On Thursday when I learned that my mom got really sick traveling to and from the doctors office on Wednesday, I made a decision, without consulting my mom, that she and I would spend the night near the hospital that night.  She had to have yet another test run prior to the surgery and it was scheduled for 3 on Thursday.  It would take 2 hours to perform the test,  add in the 90 miles to and 90 miles from on top of having to make the trip 90 miles again the next morning and be back there by 5:30 Friday morning...and I didn't know if even I was up to it. 

Sure enough, it was almost 6 when we were ready to leave the hospital Thursday evening.  We grabbed a sandwich and found our bed for the night.  It wasn't cheap but when you consider the cost of gas driving 90 miles one way several times, the wear and tear on the automobile and more importantly, the wear it was putting on my mom, it was well worth it.  She immediately got in her PJ's and got comfy.  She slept on and off until I finally went to sleep around 11. 

We got up and to the hospital by 5:30.  She had her biopsy and when that resident came out to talk to me instead of calling me like we were told he would, I knew the news wasn't very good.  Then, he found us a suite to chat in while other doctors were delivering their post-op news right there in front of everyone.  I was already about to throw-up.  My cousins (one of which is the one that lives with my mom) and their mom were there but had gone to smoke.  So, there I was, all alone, listening to this resident tell me the severity of my mom's condition.

She was in recovery for hours on end because they didn't have a room ready for her.  Finally about 11:30 the nurse let me go to recovery and see mom.  Immediately she asked what the doc had said.  I relayed enough to satisfy her.  I was only allowed to stay for about five minutes.  When I returned to the waiting area, my cousins weren't back (I forgot to mention that yet again, they were gone to smoke). 

Once she was in a room, we gathered my belongings and headed that way.  The doctor himself came by late yesterday afternoon.  He and 3 or 4 residents which is par for the course in a teaching facility I suppose.  What he said was simply  not very pleasant.  I've documented all of that in my last post.  But, basically, she has cancerous tumors in her lungs, more than the 4 we knew about, she has cancerous fluid in her lungs as well as cancer in the pleural cavity and tissue in the lung. 

Mom will see an oncologist the first of the week for more information from the standpoint of what to do about the cancer.  The surgeon wouldn't even discuss treatment other than to say that chemo was her only option because the cancer is in her blood stream and thus circulating through-out her body.  My mom asked him what the chances of getting better are and he refused to answer her.

Mom continued to have a pretty optimistic look on her face.  The doctor tried once again to explain the seriousness of her condition.  She really didn't seem phased, but I was sick at my stomach and had to sit down.  When the doctor left, she cried a little, I cried a lot and then it was as if we never even heard what he said.

Later last night mom was very confused.  All the pain medication along with being put to sleep was causing her to sleep periodically and to be clueless about time.  She would wake every 20 minutes or so and asked what time it was and then comment on how she thought it was almost bedtime. 

This morning she talked some and from what I can get from  her, she basically thinks that since they removed the fluid, she would be getting better each day.  She talks like she thinks the fluid won't come back even though the doctor told her it would and would do so fairly quick.  Her condition had deteriorated so much from last Friday when we first saw the surgeon til yesterday morning when we arrived for the biopsy.  Then, today, she was much better and the resident said that was obviously because the fluid was dried up and drained out for the most part.  And, again he told her that it would come back and the speed in which it came back would determine the process ahead.

We were told that if it continued to build up and she wasn't tolerating it well, they could put a tube in to remove the fluid and then have a nurse come to her house and see her.  THAT sounds bad to me.  Mom thinks it won't be necessary.  But, yesterday after the doctor left, a sales rep came by with her portable oxygen tank and told her (or me really) how to go about getting the rep out to put the unit in at home.  She continued to say she didn't think she would need it.

This morning we asked the nurse about it and she said mom's oxygen levels were really good without oxygen right then and that she might be fine but since the doctor ordered it, she should at least take it and see what happened.

When we arrived home, I unloaded her with the help of my cousin's mom.  I unpacked her things and left her to rest.  I had called the oxygen rep to tell him we were home and he could come out anytime.  Again, mom insisted that she didn't need the oxygen.  But, we were following doctors orders.

I came home and napped and then the boys and I went to moms for a short visit while Wayne re-grouped and got his thoughts in order.  He had been a single parent for 3 days and he was beat.  When we arrived at mom's, she had the oxygen on.  She said she got really weak and out of breath just talking to family and decided she better try it.  She didn't say as much, but I could tell she already didn't feel as well  tonight as she did at lunch today. 

The boys and I stayed til about 9 and left for home.  She said she was going to sleep in the recliner because she can't lay down.  I don't know what lies ahead.  I do know that tolerating chemo is going to be really tough for her.  She even went so far as to say that she might not have it.  Of course, that's her decision but I can't imagine not trying anything, at all.

My uncle that died last June had lung cancer.  A life long smoker who smoked up until about 3 days before he died.  My mom has never smoked and the surgeon indicated that mom's cancer is from the endometrial cancer she had last summer.  This alone labels the cancer as Stage 4.  Anyway, my uncle had one chemo treatment and developed pneumonia.  Mom thinks this will probably happen to her too.  He didn't take another treatment as that one treatment put him in the hospital for over a week.  He died less than a year later. 

I have another uncle who had lung cancer when Walker was one.  He had part of his lung removed and had the therapy.  He didn't live for even a year either.  I know that my mom is thinking about that as much as I am.  We haven't talked about it though.

Lastly, mom is getting upset quite a bit because she is so confused.  Earlier today she started crying because she said she would close her eyes and hear people talking.  And, when she would start to talk to answer their questions, she would wake up and realize that the people were no where to be found.  She told me about trying to talk to my great-aunt who died 2 years ago.  You can see, things simply aren't pretty around here. 

I lost my dad when I was 19.  The depression lasted roughly 12 years.  I have better medical intervention as well as a husband and kids now that can help keep me afloat.  Also, his death left me with a lot of guilt because I was young and didn't realize the severity of my dad's condition and thus didn't spend as much time with him as I wished I had.  I don't know how I will make it without my mom.  The two of us have never been really close.  I was a Daddy's Girl and it was hard for her.  But, I love her as much as I loved my Dad. 

You know what really seems to be hurting me the most right now though?  The fact that my kids may not have their Grammy around long enough to bask in all the greatness that my mom has to offer kids.  All of my cousins, first, second and some third, love my mom.  They have all cried to spend the night with mom, visit with mom, stay at mom's house.  And, my kids are no different.  The difference is, most of them were able to enjoy all of her doting and spoiling until they were old enough to realize just how wonderful she is.  My kids may not have that opportunity.  That hurts me worse than ever.

I know that it is going to be hard on me.  I really do know, I know how hard it was when I lost my dad.  But, to see my kids hurt, to miss their Grammy, that is going to hurt me way worse I think.  Jace even wakes from his nap at daycare crying for his Grammy on occasion.  They don't have to see her or even anticipate seeing her for some special something, they simply cry for her like some kids cry for their mom.  (They do that for me sometimes too, but I've never seen kids do this like they do.  And, trust me, I hear lots of kids wake from a nap on a daily basis and none of them want their grandparents when they wake up or get hurt unless they have seen them recently or something.)

Lastly, the surgeon who did mom's hysterectomy felt sure he got it all.  He did take her lymph nodes but didn't see it necessary to do any thorough follow-up.  Then she got the small cancer in the suture area from the hysterectomy.  She had radiation that time.  But, again, he didn't think it was necessary to do a full body scan and such.  He felt sure it had not spread and would not spread.  And look, look what has happened.  We don't know the extent that her cancer has spread.  My gut told me last November that the pain in her right side was not pleurisy like the general physician suggested.  Her chiropractor told her in late December, early January that she needed to demand further tests.  She didn't.  He knew it, I knew, maybe she knew it too, but when I called the oncologist, he said that she needed to tell her primary care physician.  Again, he called it pleurisy and blew it off. 

Finally when she was in so much pain that she was missing work (she didn't miss one single day in six weeks while having radiation every day, but this was putting her down), I insisted she go see the oncologist.  He ordered the cat scan.  That was six weeks ago.  That's how long it has taken to light a fire under the ass of the medical professionals.  And, in the six weeks since she had the cat scan, her health as deteriorated from not feeling well, tired, missing a day of work every now and again to giving up on ever working again, sitting in a recliner, day and night, allowing other people to wait on her, crying alot, being confused and using oxygen.  Why?  Why did they dismiss her?  Why did they dismiss me?  Why didn't they follow through?  Why wouldn't she listen to me?  To her Chiropractor?  Why wouldn't she simply push for more answers?  Why didn't I push for more answers?  That's all I want to know, WHY?

This was going to be a short update, a way of documenting the stuff going on right now, but it has turned into a small novel.  I won't delete it but you won't hurt my feelings if you simply can't or don't have time to read it.  I know that lots of people recover from cancer after treatment but thus far in my life, I've just not experienced life like other people have.  I don't mean to be so pessimistic and I do my best not to let my mom see me in this shape, but it really does help to get some of this out. 

The guilt is tough.  The guilt from feeling like I need to be in so many places when I really need and want to be with my mom.  Are you wishing I'd shut up already?  Yea, me too.

Here’s what is going on. Dr. Cerafoli came by. The cancer is most likely from the endometrial cancer last summer. However, it is in the plural lining thus it is considered systemic. Because it has spread from one organ to another, it is considered Stage 4.

I don’t know how I can hold up. I do not want to talk to anyone on the phone. I’m not answering it unless it is Wayne or I’m simply in the mood at that moment. I don’t want to talk to anybody. No one but you and my babies. I don’t know if I can do this. Mom is so much sicker right now than she was a week ago. She said so herself this morning.

The good news is that the PET scan did not show a lot more chances that it had spread but since it is in the blood stream, it doesn’t really matter. Mom asked him what the chances of her recovering were and he wouldn’t answer her. He told her would rather her get that kind of information from the cancer doctor. We will be going to see Dr. Sanford on Tuesday if possible. He said what he did today didn’t make a difference in the chemo and that she could start it tomorrow if that’s what she decided she wanted to do. But, he wasn’t very optimistic to be honest.