When mom got sick... Rico told me that this battle would be like a marathon...he was right. I've been emotional the last couple of days... and am wondering if I have the endurance for this... then I feel guilty because how can I not have enough energy when my mom is enduring... my dad is enduring... and their loads are heavier than mine...I'm tired.
I stumbled across some beautiful artwork by Canida Maurer at http://www.artfromarchetype.com BEAUTIFUL work there! Go see it! I wanted to use one of the images for this post, but did not have permission...so I am sending you to her site... look at the one entitled All-Seeing Heart. Beautiful.
I found her site when I googled something like seeing heart... because I have been thinking a lot about the connection between our hearts and what we see... what our hearts see in people and what their hearts see in us...thinking about the goodness I see in the hearts of the people around me...the people who care about me... who love me...
How can we see with our hearts? How can we not? How do we see what people need? How do we know what people need? Our hearts tell us... our instincts...
I hope that my heart has led me towards seeing what people need and helping them...I feel that my heart is one of my strengths and helps me help kids... but I am not as good at having my heart tell me what I need...when I need help... why is it that our hearts see things so clearly in others yet blurs our own reflections? This week I have been overwhelmed... my heart has been overwhelmed at people whose hearts have seen what I may need... and who have acted upon those visions... and who were/are right... I'm not used to being on the receiving end of seeing hearts... and it is uncomfortable...yet comforting... uncomfortable for the fact that I don't like to recognize that others can see my weaknesses or needs or know when I am not ok... I like to be seen as handling things well...as strong... it's comforting because I need people and don't like to tell people I need them... so when they see that I need them... when their hearts see that...I am comforted...
I think our hearts have 20/20 vision.
It reminds me of a Shel Silverstein poem entitled "No Difference." I believe I have quoted it here before... but want to do so again...
"Small as a peanut,
Big as a giant,
We're all the same size
When we turn off the light.
Rich as a sultan,
Poor as a mite,
We're all worth the same
When we turn off the light.
Red, black, or orange,
Yellow or white,
We all look the same
When we turn off the light.
So maybe the way
To make everything right
Is for God to just reach out
And turn off the light!"
My mom is still in the hospital... she was taken to the hospital because her incision was leaking... doctors were unsure about why it was leaking and what the fluid was from.
Turns out the fluid is a combination of a couple of things. The tumor has ruptured and the fluid needed somewhere to go... so it went to the weakest area of her body...her incision... also... during her surgery in Dec. part of her colon was resectioned and part of that has come undone or is leaking or something along those lines... so fluid from her stomach/intestines/colon, is also leaking into her body and has found the path somehow into the tumor and out of her incision. It's a bad situation. The doctors struggled to speak with us... and told us that they could do more surgeries to try to temporarily resolve some of the issues going on... but the potential for complications was high, very high. Another surgery could possibly fail, could result in mom not surviving the surgery, infections, and would be another incision which would provide another weakened area for things to escape from... the doc said that there was no way to know how mom's body would handle another surgery and that at the very least would result in an additional week or more in the hospital... if things went optimally... and chances were good that she would be back in the hospital within a couple of weeks for similar complications...
The doctor also said... that given the images they saw Friday... they are all amazed that mom has lived this long. They used the word terminal for the first time... and suggested that we speak with someone from the palliative care unit... which is just fancy talk for hospice....
Mom has decided that she doesn't want to go out at the hospital... doesn't want to go out while recovering from another failed surgery.... she feels like she has done enough... she doesn't want to put her body through anything else...period. She wants to get out of the hospital as soon as possible, get home and eat pizza. the doctors have told her that eating solid food may not be an option because the tumor, which has grown since her Dec. surgery, is pushing on her stomach in a way that restricts solids from traveling through her stomach... and have encouraged her to limit herself to fluids...however, given the circumstances, they are letting her make the decisions about her diet... and she has chosen to eat... soups, sandwiches, scrambled eggs... and she WILL have pizza... with bacon, mushrooms, and pepperoni...oh yeah, and extra tomato sauce...
Ironically mom feels better than she has since surgery. The leaking fluid has decreased the pressure that the tumor was placing on her and she is more comfortable ... so even though physically, inside she is worse... she feels better... kind of a cruel trick...but kind of a gift all at the same time.
So... we are moving into the hospice part of this process... which is interesting... Rico had forewarned me that certain things would happen... and they have... for example... now that everyone agrees that mom is dying... and that she is not going to do any radical procedures to 'fight' anymore... she is eligible for medications that are otherwise not offered... her pain medication will now be given in a liquid form that she holds under her tongue and is effective within 15 minutes... instead of a pill that she has to try to swallow and that may upset her stomach... why was this not offered before? Also... she has now been put on something for nausea... it's a cream that she rubs into her wrists to reduce nausea... was never offered until now... even though nausea has been one of her most intense symptoms through all of this...
Nuts...
One thing that my mom has said to several medical staff during this hospital stay is... "Well... everyone lives until they die." I'm telling you... my mom still has her sense of humor... still thanks people for her care at the hospital... even thanked the doctors who verbalized her death sentence to her... she hasn't thrown any tantrums... hasn't hit anyone or threatened to... and as upbeat as that saying is... it annoyed me that she could be so upbeat... in a way... and also hit my sister in that way too, so we started a new game... sayings that we can use instead of 'everyone lives until they die...' so far we have come up with... everyone's clothed until they are naked... everyone's hungry until they are fed... and a couple that I just can't mention here...
So far there has been no violence through all of this... though dad wants to smash something...sis wanted to break plates... and well...I wanted to... hit a doctor...
On Saturday a surgeon came in to check on mom... he was not either of her surgeons... but was covering for one of their offices... so he came in an started asking questions about mom's status... and it made me feel like he had no clue what he was walking into... so I asked him if he knew what was going on and he assured me he knew her history, but then asked more questions that made me KNOW he was full of shit. He maybe knew that mom had a surgery to try to remove a tumor but he obviously did not know the results of the tests that had revealed what was currently happening... but he tried to make us believe he knew what was going on... so mom asked about increasing her diet from clear liquids to full liquids and this guy hesitated... I was proud of mom when she advocated for herself when he hesitated... she said that her regular doctor had told her that she would be progressed during the weekend... and this guy stalled by asking if he could examine her... and then after we told him the results of the tests he hemmed and hawed and tried to tell her what was going on inside her body.. and we didn't let him talk to us like we didn't know all that... we interrupted him... then he shared the risks of full fluid diet and solid foods... we all started to jump in and say... look asshole... we know what's going on... and we know what the doctor...the REAL doctor told us.. and you don't know your head from your butt so back off... (maybe we didn't use those exact words...) Mom ended up saying something along the lines of, "Well Dr. Going-to-get-my-daughters-foot-up-your-ass, I don't have much time left and while you may have control of what I eat at this hospital I AM going home in a couple days and I WILL eat pizza!" and he said, "Well I guess I am not going to deny you but I think that it is unwise."... but said he would change the orders...and practically ran out of the room. Good Riddance!
After that...I shared with my family that I had promised Rico, who never actually hit any of the medical staff who cared for... maybe 'cared for' is the wrong phrase...the medical staff who oversaw her medical treatments...anyway...I promised him that given the opportunity to lodge my foot up one of their asses, I would do it... for me, for him, for my mom, and for his mom... so... that doctor left in the nick of time...
I am relieved that mom and dad have opted to go the hospice route... While the circumstances are not going to improve... they will have much more control over how things unfold... and... accepting hospice... means that you are accepting that you are going to die... but it also means that you are going to die...with dignity... something I don't think can be provided in the typical hospital setting.
So yes, my mom is dying... but she is also still very much living... very much...
I am sure that I will write more about all of this as I process it and as things unfold... and as my heart breaks more for my dad than any of us in this scenario... but... for now... today... I am thankful that mom is feeling better...thankful that my dad is happy to see her feeling better and seems more at ease... and am thankful that they are welcoming hospice into the equation... I think it will start to bring some peace to them...and to me...
I hate that I am losing my mom... that my life, dad's life, my sister's life...the lives of our other family members and friends will be changed forever... and I am angry... but I am also tired... very tired... and am coping... detaching at times... crying my eyes out at times... trying to find humor at times....but I am coping... I am living... living while mom is dying...
Issues of control, or lack there of, have been in my mind a lot... SOOOO many things are out of my control...and those things really upset me... I think that I am handling things well...considering. I have noticed changes in my desire to socialize... I want to be around people, except when I don't want to be around people... but when I am around people, I want it to be people who are close to me... who will understand if I am zoning out for a minute or two in my own world without drawing attention to it or asking where my head is... they know where my head is... and know that things with my mom are so much in the forefront of my mind... they get that I may want to talk about it at times and other times I just want to be... Last weekend I had been invited to a hockey game and at first I was hesitant to go... but when I learned that a couple of the people who had been invited were unable to attend, I wanted to go... because it meant that it would be me and two of my good friends... and that is totally in my comfort zone right now. So I went and had a good time...
For a while my knee made me feel like I had no control over what my body was experiencing and I resented that so much... and when I got the great news last spring that I was PVNS free I was so excited... until my foot started bothering me and then I was angry... now I have taken care of my feet issues... the new orthodics are great!... and my knee is good... so I have no more reasons for keeping the weight on my body that crept on as my knee got worse over the years... So I am going to take control of my body, of my choices... and work out...eat well... and be healthy... these things I CAN control... and I need reminders of that...
Today was an encouraging start... I did just over two miles on the elliptical machine... in 30 minutes. That is a much slower pace than what I used to be able to do, BUT... it is the most I have done on the elliptical in... well... maybe since before knee surgery.
After the elliptical machine today I stretched and did some weight training with my arms... while stretching I looked at my scar on my knee...I know that it is there... but some days it stands out to me more than others... today as I looked at it... I could see that it is fading... it is still VERY noticeable and I am sure people still react to it...but for me, I know that it is fading... maybe I should think of it as healing... deeper healing...
I think I could use some deep healing these days... and I think that I need to help my body and mind as much as I can... in the ways that I can control.
My students are aware of what is happening with my mom... not all the details of course, but they know that I missed school before Christmas because Mom was having surgery...and they know that the surgery was unsuccessful and that their teacher's mom is sick, very sick, with cancer, and they know the future is bleak.
It's one of those things as a teacher that I debate... how much do I share with my students? Kids are smart. They know how to read people and can tell when the people in their lives are not okay. I believe that when kids see people upset, not knowing the truth is more anxiety provoking than knowing the truth. They would know if I wasn't telling them the truth...and that would damage the rapport I have with them. I have held it together at work, for the most part, but there have been days when my patience is thin and my demeanor is more withdrawn...the kids pick up on that. So, I have shared with them that I may miss school or may have days when I am sad because of the circumstances... and they get it... not in the way that adults get it, but they get it... especially the kids I work with... most of whom have pieces of their lives that are difficult. They get it... and in their own ways...some of them try to comfort me...
Today I received one such gift... from one of my students. She is a young girl, petite, and quiet. I don't know much about her history because I only have her for one class and am not her case manager. She is in the program at our school that is designed for kids with significant behavior/emotional issues. I have never seen her exhibit behaviors that would make me suspect that she would be a part of such a program. She has had difficulty trusting adults and feeling valued in her life. Throughout the year her case manager has told me that this little girl loves math this year and talks about me a lot. I smile when she tells me that, it's nice to hear, but haven't given much thought to it.
Today, she came into my room, well after her class... and managed to find me when there were no other kids in my class. She said she had something for me that she wanted to give me... and she handed me a book... entitled "Teachers Touch Loves." I thanked her immediately and she said, "Open it, I wrote something in there for you."
"Dear Teacher," it said, " I'm sorry you are having a tough year so far. I'm really happy you are my math teacher! Thank you for teaching in a way I understand Math! It's more fun now. Thank You! Love, Student."
The words touched me so much... Her sentiment... her ability to look beyond whatever is going on in her life... to have compassion... for me... THAT is the gift I received today... from an eleven year old girl...
Beautiful...that girl... absolutely beautiful...
Resolutions. I rarely make them... losing weight, being healthy, yadda yadda yadda... been there done that... mom doesn't believe in resolutions... she often says that the only resolution she ever kept was to never make another resolution. Makes sense I suppose. I do hope to be healthy in 2009... and losing weight would be a nice side effect of that. I don't resolve to do anything... but... my goal... is to stay sane, that is if I am sane already...to keep people/things close to me that keep me grounded... this includes my cats... and... to breathe when I get overwhelmed. I have a lot of hopes for 2009... but those things seem to lack priority right now.
I talked with Rico last night. He is on a job and I figured that the conversation would be brief, but we talked for a long time. It was nice. He gets it. What I am going through with mom...in a way other people can't... and I am thankful that others can't... because that means they have not yet had to experience this. But having someone who does get it... well... it's hard to articulate... we can talk about it in a different way...and don't have to say some things because it's just understood. In the midst of our conversation he talked about something that I had written about in my blog... about hating that my future husband and children (assuming they exist) will most likely never meet/know my mom. It hit me hard when he brought it up and the way that he told me that he understood it and knows that in some ways it creates both a sense of urgency in me to find those aspects of my life... and.. a sense of guilt...guilt that those things are a priority for me right now when I feel that maybe they shouldn't be...because my focus is so much on my mom... it hit me... when he talked about it.. because it's stuff that has swirled in my head... and haven't expressed it in that way... it's comforting that he gets it... that someone does.
After talking with him... I had a strange night of sleep... like it was interrupted a lot, yet I felt rested this morning.. but I know that I either had several dreams, was woken up often by the noises around me or the cats, or maybe even woke up several times and sat up... I can't explain it. I woke up a couple of times thinking of my grandfather, my dad's dad... for some reason.
My conversation with Rico was on my mind a lot today too... mostly because he said that he wished he could be helpful... that there was something he could say that was wise or that would make things easier... and said even though it is familiar to him... there is nothing that can be said to make it easier. He said he doesn't think that he is helpful to me... but he is... and I wish I could articulate it in a way that would make him realize that. I am thankful for you Rico and am honored to be one of your 10 friends.
I called my dad this morning... to say hello, to see how he and mom were doing, to see if it was snowing there, and to brag that I had the day off because of the winter weather. I think I need to call less...I know that mom and dad know I am thinking of them... but when I call I am sure that it is a reminder of what's going on... Normally... I talk to my parents often...almost daily... so calling each day doesn't seem abnormal... but... I don't want to be a nuisance either... but... I also need to be true to me and call when I need/want to call.
Balance... maybe that should be my resolution....between dread and hope...anger and forgiveness...intensity and relaxation...and... taking care of myself and taking care of others....
(Image from http://www.listenforjoy.com/art/large/passion4-balance.jpg I think it's a quilt.)
Given all that my mom has been going through, I have often thought about how her body has betrayed her... on several levels. Not only has the cancer aggressively established itself in her abdomen, it has caused her to not have control over some of her bodily functions. I have had a lot of empathy for her... more so over the last few days. I got hit with something... the flu... or bad seafood... or something... on Friday night and the weekend was not a pleasant one. I am actually home from work today because of it... which is crazy because this would have been the first day back to school after vacation and I hate not being there... but I had no choice. When I was up at 2:30 this morning, again... I decided that I needed to stay home. Crazy. How our bodies can just override our minds... how it can totally take over is amazing... our bodies do so many things that are not even in our consciousness... that I guess it makes sense that sometimes we become acutely aware of things that our bodies do... This weekend has definitely resulted in thinking even more about my mom and what she goes through. I am exhausted... and I have more ability to endure such things... so I can't imagine how exhausted she must get.
My mom is home from the hospital... has been home since Dec. 26. There was a noticeable difference in my dad's stress level once they were able to get out of the hospital. Granted, he was exhausted, but being at home somehow makes things better. For one thing, mom was able to rest undisturbed. I have only spoken with my mom twice since leaving them at the hospital on Christmas day, but have talked to dad 1-2 times a day. Dad does see small improvements with mom since surgery, but it is a slow process... very slow.
People are trying to help... asking what they can do to help... and it's hard to know what to say... people's first instinct is to bring food... which is helpful, but mom's appetite is so small that too much food results in dad overeating or the food going to waste... thankfully, one of their friends has kind of been leading the food situation and dad has been honest with her and said how much it is appreciated, but that they can't eat a lot of food right now... so I think so far it's ok... another way to help is that mom's friends have been coming over to sit with mom while dad runs errands. Dad is uneasy leaving mom alone right now... and I can't blame him. So it's nice that people come over to put his mind at ease. I am so proud of him for asking people to do that.
I have a lot of guilt. For living three hours away... for not being the person with mom while dad runs errands... for teaching and coaching while she is having such a hard time... for needing to teach and coach to distract myself... I am heading up there again soon... not this coming weekend, but the following weekend...then most likely will spend most of my Feb. vacation there. I feel better having a plan of when I will visit, but it just doesn't feel like it's enough.
2009.
I had a fun New Years Eve Day/night... I coached yesterday then had organized a bowling trip for the kids on the team, which was a lot of fun, then spent time with and saw the New Year arrive with some great people... Soon after midnight one of my good friends, Meg, called me. She said that she wanted to call me because she thought that of everyone she knows... she wanted me to have hope and love heading into 2009... She wanted me to know that she's my friend and no matter how the year plays out, she is there for me. It was a nice call. It made me emotional... and brought thoughts that had been swirling around in my head very much to the surface. As best as I could, I tried to quietly leave the group of people I was with to have a moment... but my friends are good... and noticed. I felt like Debby Downer... knowing that a new year is suppposed to bring with it hopes of things to come...new opportunities, new beginnings... and I just can't seem to see how the current circumstances of my life can be spun in a way that can be seen as opportunistic or positively anticipated... I don't think of firsts... I think of lasts...
I am thankful for my friends and family...thankful that I have had support from people...and for the support I know I will receive in 2009.... but one word comes to my mind for this year... dread.
