Yesterday was a hard day on all of us... Mom was so discouraged...she even said to me that dad and I should just go and leave her here...that she probably shouldn't even think that she could handle going home, that she should just 'get put' somewhere... she felt awful... physically and mentally... she had thrown up a few times and each time it put us all a bit more on edge and along with other factors made us more and more concerned about a possible bowel obstruction.
The reality also set in that we would be spending Christmas at the hospital.
This stressed me out a lot... mostly because I wanted to be able to help get mom and dad settled in before having to leave...I need to go back to my place for a while to coach... I don't have to go back.. but I feel like I need to... for the kids... for the commitment I made to them... and selfishly, for my sanity. I hadn't slept much on Monday and then yesterday I came over to be with mom around 2 a.m. and she was up until dad returned at 7:30 or so....dad and I had each accumulated laundry and while I know we could have asked people to wash it for us, there was a washer and dryer right at the hotel... so after I left mom's room I went back to the hotel and did laundry.. then decided that I should drive to my parents house to get the things done there that I wanted to get done... I had planned to leave the hospital earlier than mom and dad on whatever day mom was released and get there enough ahead of time to get things done... but... that didn't work out... so I went up yesterday and the further away from the hospital I got... the more emotional I became... I think that the circumstances here require holding it together... I don't want to be upset in front of mom because she would get upset and crying hurts her incision ... I don't want to be upset in front of Dad because he is trying to be strong for us all...so.. I had some time to get it out... not to get it all out because I am sure that there is more where that came from... but I did get the things done at their house that I wanted to...someone had plowed their yard which was awesome! I swept the little bit of snow that had drifted onto their porch and put down some sand for them... but of course it is snowing a bit today, so I am not sure how much good that did... Some of their friends are loaning a twin bed to them so that mom can have a bed downstairs during the day... and mom wanted to make sure it was all made up before she got there so that when she arrived, exhausted from the drive, she would be able to come in and just lay down... so that's done... Mom and dad also asked me to bring the presents that were under the tree for me... back here... to the hospital... which just felt wrong... I brought them... they are in my truck... but I don't want to open them here... just don't.
So I got back to the hospital around 3:30 p.m. and managed to be less emotional... and sent dad back to the hotel to stretch out for a while... while he was resting mom was sick again... and I was very concerned... I asked the nurse if she thought it could be an obstruction and she said she was going to call the doctor...she did... he came over... which was calming to me for some reason. He felt mom's abdomen and said there did not seem to be signs that her abdomen was hardening... which was good.. he also said that if there is going to be a blockage, given the position of the tumor, the blockage would be very close to her stomach, meaning that she would most likely have vomited within 10 minutes of eating something... so he thought an obstruction was unlikely, but to be safe, ordered xrays for today... she had the xrays this morning and there is no obstruction... Yay! I'll take that as my Christmas present...
Last night mom slept the best she has since arriving here... so both dad and I got some rest while sitting in her room with her. She also began moving more easily and today has seemed less discouraged... though the morning has left her exhausted.
I feel guilty about going back to my place before mom and dad are settled at home.. but they both have assured me that I should... to get back to something 'normal.' There's that word again... normal... I am hoping that tonight maybe dad and I can both stay at the hotel all night and mom can do ok on her own... I think she is at that point... and also, again, selfishly, would feel better leaving knowing that dad was able to get a good night's sleep at the hotel each night instead of sitting at her bedside to try to get rested...well as much as possible anyway...
I was a little protective of my mom since the staffing issues on Monday... Granted... I was tired.. BUT... (capitalization not a mistake here...) BUT... the staff that day did not handle things as they needed to be handled... yesterday the same nurse returned... and I was skeptical... but she did very well... very well... and in her own way kind of acknowledged that the day before had not gone as well as it could have... she commented at one point when she was going to call the doctor that she would remember to ask for all of the things we had wanted to know... instead of only one... perhaps that was a dig towards my admonishment the day before...but giving her the benefit of the doubt, I think it was an acknowledgement that she could have handled things better on Monday... I was ready however... at any point to have them switch nurses if needed... today the nurse tech who was here on Monday returned... she was better today too, however... still not a favorite of mine. Her demeanor on Monday made mom feel badly about things out of her control...embarrassed even... which is completely unacceptable to me.... when she arrived this morning she had a trainee in tow... (The teacher in me thought... uhh... this girl teaching someone the ropes...maybe she is training this poor other woman on what not to do..... then also thought... well maybe she will do better because she is the role model...) She did interact better with my mom in a similar situation... but did make one comment that got under my skin a little... something along the lines of next time dear... let us know ahead of time...I quickly retorted and made her realize that had there been any forewarning the situation would not have occurred and that things were out of my control... she corrected herself by saying, oh I know... I was just making light of things... I'll make light of things for you... or knock your lights out lady.... no.. she really was kind in how she handled things today, but... she's on the radar screen of whose ass will I kick first should the mood strike me.
Mom has said so many times how grateful she is that my sister and I were here for this... for dad, for her... and said that it means so much... she worries about Sis feeling bad about not being here now...but is happy to know that the boys have their mom home for Christmas.
Sis had brought a present for me... a miniature Christmas tree (with silver needles... the tree kind of needles, not the hospital kind of needles...needed to clarify that given where we are.) ... complete with purple lights... that run on batteries... so ... later today I am planning on bringing the tree and the lights over here... to mom's room. The lights may be used to pimp out mom's IV pole... you may remember that after my surgery I had a pimp my walker and crutches competition, so I figured that we can pimp out her IV pole... at least for Christmas.
I feel better today... mostly because I do feel that mom is doing better... because I know there is no obstruction...for now... and I feel like I actually got some sleep over the course of the last 24 hours...
I'm not sure if it's the fact that we have been at the hospital since Wednesday... or the fact that it's close to Christmas and I am lacking some holiday cheer... or the fact that the storm last night has caused there to be fewer staff people here...or that I am tired... or if the personalities of the nursing staff today are hitting me wrong... but... something is a-brewing... and someone may face the wrath... today... My mom needs to rest... and people keep bugging her...it started at about 2 a.m., slowed a little around 9 allowing her to get some sleep... plus... her veins are shot... and trying to get a new IV into her arm or trying to get blood drawn has resulted in about a dozen attempts... since 4 a.m. this morning... and it's only 2:40 p.m.... plus there are some things that my mother can't control about her body right now and the hospital didn't have some necessary items 'on the floor' that mom needed... resulting in my father having to go to the store to purchase a personal supply... and it seems like the people who are coming in to "help" mom today seem a bit annoyed...that they have to help her...they haven't helped her figure out how to position herself when going from her bed to a chair so that she doesn't get tangled in her IV...we''vehad to coach her.... it's almost like they think she should be able to do everything by herself... she still has an epidural... still has a catheter... still has IVs... so how the hell is she supposed to be able to do things for herself... not to mention she has an incision that is probably 15 inches long across her abdomen...and don't make her feel bad about things she can't control... you're job description should include compassion, damn it... maybe they want to be home with their families on a day like today.. snowy, wintery...so close to Christmas... well... I am sure we would like that luxury too... I am trying to play nice.. because mom has, in her own way, asked me to play nice... but... these people better start playing by the rules... grumble grumble.
(I must add that up until today I have been very pleased with the nursing staff...up until today!)
Posted by TallGal at 2:37 PM
My mom... is amazing... her attitude is unbelievable to me... I think if I werein her shoes I would be telling everyone they were number one without using my index finger... but mom... as usual... is making things easier on other people. Today she had a lot of company... and I admire people for that... it is so hard to visit people in a hospital when things go well.. and visiting under these circumstances ... well.. I think is very brave... My good friend Deb stoppped by to see me today and that meant so much... she has a lot of things going on in her own family right now and she understands a lot of how i am feeling... and Debbie's best quality is her big big heart... and I love her for that... for wearing her heart on her sleeve...One of my uncles is having a very hard time with the news... He was here with us when the doc talked with us after surgery... and this hits cery close to home for him... he too suffered with kidney cancer and has been in remission... thankfully... but I can't imagine how he is feeling... the thoughts that are inside his head... trying to make sense of all this is hard... more than hard... I love that he is being honest with himself about what he can and can't do... I think that we all need to do that more...
I'm with mom in her room tonight. She told me that she wasn't sure if she needed someone ornot.. but throughout the day she hinted about feeling more comgotable if I did stay... so there really is no decision to be made. Tomorrow may be different... Dad is back at the hotel. He seems to be doing ok.. but I did notice his back bothered him a couple of times today. I am thankful that he will go relax at the hotel a couple of times throughout the day.
My sister had to leave today... to make it home for Christmas... tried to avoid the snow... but drove into some bad weather... but she made it.
Posted by TallGal at 9:21 PM
It's almost 4 a.m. I got up about 45 minutes ago to come back to mom's room... Sis had been here most of the night. Mom has been able to rest...finally. Come to find out the epidural wasn't working... so she suffered through all of lsat night and yesterday morning with no pain relief. She said she was "uncomfortable" but figured after being sliced in half that was normal... Uncomfortable? Geesh... I remember the pain from my knee... and this has to be worse... with no epidural... after getting a new eipdural mom said she was much happier. She even went for a walk yesterday... oh yeah.. her sleeping... so because she had been in so much pain she had not been sleeping...but she has been able to get some rest... which is good. Dad, I think, got some sleep too... he is having a hard time... that's a given. he hasn't eaten much... but I am trying to keep an eye on him and am buying him food... I think that he is in the mode of going through the motions of things... he had ice cream and cookies for dinner last night... saying that he didn't know what he wanted to eat... I ended up buying him some spaghetti and he ate it...
I have received a lot of eails from people... and I appreciate them all... I haven't talked to anyone on the phone... mostly because what is there left to say really... and finding a quiet place to talk is almost impossible... one friend wrote to me that this is one of those meteor hitting the earth moments... changing life forever... and it sucks... true. very true. I've thought a lot of Rico.. he was the first in my inner circle of friends who has lost a parent... he has lost both actually... I will be the first amongst my local friends to lose a parent... not quite the "first" title I would hope for... first to fly to vegas and get married... first to have twins... first to pulish a book of some kind... those are the kind of first titles I would be ok with, would enjoy...comfort in that... if there is any... is that I know that when someone else who s close to me goes through it I will be able to be there in a way that others can't... because you don't understand until it's you... and I am only at the beginning stage of that process so I don't even fully understand yet... Rico has been that for me... someone who gets it... and while I hate that he has 'been there...done that'... it is helpful...
I want my mom... wanted my mom... to see me get married.. have kids... unless I do fly to vegas and adopt... those scenarios are now unlikely...improbable... ,meteor hitting the earth...
Posted by TallGal at 3:58 AM
Surgery is done... it was not a success. They were unable to remove the tumor from my mom's abdomen. It's attached to the artery that provides blood supply to her intestines... if that supply is cut off her intestines die and death is imminent and pretty immediate. If they had damaged that artery in the surgery we would have no time...
Who knows what thought process is normal under these circumstances.. but as the afternoon progressed we were informed that mom was in recovery...and that word angered me... recovery... that means that you get better. She is not going to get better. The doctor told us tonight that this cancer will kill her.... it's a matter of time... perhaps some medicine will allow us more time, but... it will progress... it's already invading part of her intestines and eventually will cause blockages..or... it could rupture and she could bleed out slowly or immediately... so our focus shifts... quality of life... for her... not for us... whatever she wants... we honor.. bottom line.
I didn't know what to expect from this surgery... and I felt like I had prepared myself... saying that if it was successful...great... if it wasn't... nothing had changed... but it was hard hearing that nothing could help... again... I held it together for a bit... but when they took us to recovery to see her... that was a lot.. I thought I was going to vomit... thought I was going fall over... I had to walk away.. didn't want my dad to see me because i knew it would upset him... so I tried not to breathe because breathing would cause me to hyperventilate... but not breathing almost caused that too...and it got really hot... and I felt like I needed to stand absolutely still or else I was going to explode.
I don't understand any of this... people talk about faith and god... and mom had this surgery thinking it was god's answers to her prayers and the prayers of so many others... someone even said to me after learning this news that we can keep praying... because that has gotten us where? This whole faith thing... faith in what? That good things happen to good people? that doing the right thing is the right thing? My mom is an exemplar of someone who has lived her life as a good person... so... what the hell has happened?
Posted by TallGal at 10:08 PM
It's 3:30... mom was scheduled to start surgery at 1:00, but it was delayed because one of her surgeons was in another surgery... so mom got started around 2:30 ... with getting prepped... so.. we are waiting... Mom seemed in good spirits despite the fact that she was sick a few times in the night and was terrified that the vomiting would possibly cause the tumor to burst... and she was hungry...and felt nauseous. Dad looked pretty good when they first arrived and while we were waiting.. but soon after they took her in Dad got... wobbly... that's the word sis used.. and it seems to fit... he got a little pale and just looked a little lost... so wobbly is a good word.
Waiting is hard.. but in this case... the longer we wait... the better the outcome... supposedly.
insert long sigh here............
Posted by TallGal at 3:39 PM
School was cancelled yesterday. Boo hoo.... Just kidding. I was thrilled to not have to go to work. Earlier in the week I was tempted to take a day off just to relax a little, but knowing that I will be missing time next week for mom's surgery I didn't feel I could take a day... so yesterday was nice. Although there wasn't any power at my apartment for most of the day... the storm we had brought with it a lot of ice and made it very tough going. Several people in Maine still do not have power. It's crazy. Without power yesterday I was productive. I worked on organizing my craft room which has yet to be functional... but it is close. I need to do a little more in there and have decided to buy some shelves to finish getting it set up. I will do that after I get back from mom's surgery or after Christmas... or whenever I have time.
So... how am I doing with all this... well... when I first got back here after THanksgiving I was a mess for a few days... then I kind of shut down... and then felt very ambivalent about everything... so I reached out to Rico earlier this week... asked him if he had similar feelings when his mom was going through her battle with cancer. He said... you don't know how to feel because you don't know where you are... true. I thought that was a good way to think about it. I don't know where I am because I don't know what is about to happen. Today... I simply feel tired... very tired.
I think that my routine has allowed me to ignore this a little... but now this weekend... it is in my face as I prepare to get ready.. packing etc. So... I am not sure how I will be feeling as Weds. gets closer. Tomorrow I need to do my sub plans and get things in order in my classroom to decrease my anxiety about being gone.
I am not sure how much I will be able to blog this week, but I will try to keep people updated... send positive thoughts to Maine this week... to my mom and our family...
Posted by TallGal at 7:45 PM
Sometimes in life we are fortunate to find our soul mates... and I am not referring to the man or woman of our dreams, a spouse or partner... but a friend... a friend to whim you feel connected on a level unlike other friendships. A friendship that makes you know more about yourself...My mom has a connection like that with her friend Susan. I am not sure how mom and Susan became friends, but I remember them being friends when I was little. Together they did bible studies and through each other developed their spirituality. Like my mom, Susan had two daughters, slightly older than my sister and me. I remember going to their house and going camping with their family when their dad worked as a ranger in a state park. I have many fond memories of time spent with them. Somewhere along the way Susan and her family moved away. She and mom stayed in touch and we exchanged visits once in a while. As time passed the visits were more sporadic. I think the last visit was like 10 years ago. Since that time mom has often mentioned Susan and wondered where she was and how she was doing. Over the last few months I have heard Mom mention Susan more often. I asked Mom if she wanted to try to find her friend and she said yes.
The internet is an amazing thing... I found her daughter and through her daughter found Susan. This weekend Susan went to visit my mom, spent the weekend with her. They had a blast. Mom sounded soooooooooo happy... so so happy. I called a few times while they were together and each time mom sounded more chipper. They talked, they laughed, they prayed, they sang... together... Susan told mom that she was surprised that mom and a few of their other common friends had remembered Susan... maybe not so much remembered her, but remembered her with such love and passion. Apparently that love and passion has been reciprocated and Susan eagerly initiated a visit with mom.
It was nice to hear the cheerfulness in mom's voice. Really nice. The human connection is powerful... and, at least for the weekend... Mom seemed carefree.
Posted by TallGal at 9:17 PM
I have a head cold... and I am tired... but I am excited because track practices started this week. The kids make it fun. I have some returning kids and some new ones. I am making them work out pretty hard, and they are complaining... but I am doing the workouts with them and that makes them feel bad for complaining because if I can do it they should be able to do it. Ha!
Posted by TallGal at 7:16 PM