We JUST got admitted into MD after waking at 5:30 am to be here by 10 am only to have them not be ready for us until 6:30 pm. That aside, we are in her room which is lovely, and I can feel the fear striking my core as this becomes all too real now. I hate not knowing what is going to happen. Will she vomit after the very first chemo treatment? Will she become too weak to get up and walk for this week? Will she have reactions to the drugs they will give her? Everything is so sterile here. The staff comes in with masks and gloves and I know why, but it's scary to see. My heart breaks with each passing second as I miss our home, our bed, our furkids. Everything has changed so quickly. My heart breaks as I think of what she might feel and go through and knowing there isn't a thing I can do to protect her from it. When I was little and hurt or sick my grandma used to tell me she wishes she could take it from me. I never truly knew what that meant until now. I would give anything to do this for her. And I can feel the choking at my throat and the tears trying to sting my eyes and it takes all I have to hold it in and be strong for her now. So many mixed emotions run through me.
I also must say that I feel a bit guilty for posting here, knowing that many of you are going through worse or going through this with your child....I can't imagine. But as I said in my newly diagnosed posts...I am here across the country from my family and old friends...and the support is lacking. She is my world....and the thought of the possibility of losing her horrifies me.
If you read this....please tell me...people with ALL if it gets treated and they do good, they can live to a ripe old age right? She is 34!
I am sorry that you and your partner ended up needing the support of this board. I do not know the ins and outs of ALL treatment as my partner was dx about 8 months ago with AML. Your partner is young and you are at a great hospital so she has a fighting chance to beat this disease. See if you can find a social worker or a case worker to talk to so you can get some support through this journey. My partner and I also live miles away from family and close friends. I used and still use a caringbridge blog to post daily caringbridge.org). This is an easy site to use and friends and famiy can easily post messages. It was a tremendous help to me especially right after the diagnosis. These days there are lots of meds to deal with the side effects of chemo. The nurses will be able to help your partner through the process. Pay attention to the hospital's instructions around diet and cleanliness to ward off infections. Hopefully your partenr will have an easy time with the treatment.
Well, it didn't take them long to give you the "Waiting 101" lesson, now did it?
Remember what I said about day by day, step by step? It's going to become your mantra, because much of the time it truly is the best strategy. These acute leukemias are like stepping into a whirlwind; there is a very steep learning curve involved as your world gets turned upside down. Be patient with yourselves as you process an incredible amount of frightening new information and get thrown into a completely new existence.
As I said, I really never experienced vomiting, and being an AML patient, there isn't as wide a range of medications as there is for ALL. So I received cytarabine, the chemo Fontenrose said they gave her son during the intensification phase where he lost his hair. It is a tough chemo, combined as it was with another very strong chemo, and yet the medications they have these days to combat nausea are such that I simply never had to deal with the horrible vomiting cancer patients went through in the old days.
In AML, we often see that the patient appears to tolerate the chemo quite well, and then a week to 10 days later, they begin to have symptoms related to the collateral damage from the chemo. So there can be a delayed reaction, which doesn't mean the leukemia is back or is worsening - it is an expected result of the chemo. But - the chemo isn't going to drop her to her knees immediately, it doesn't work that fast as a rule. I might have missed a couple days of walking in the month I was in the hospital for my first induction chemo treatment, but I didn't mess very many, and I'm 15 years older than your girl. It sounds like they caught this early, and that's a good thing.
Now, I know you're worried, and you have every right to be. But what is going to happen will happen regardless of whether you worry about it or not, and alot of what's stressing you out may never come to pass at all. Right now, her vomiting and becoming too weak to walk hasn't happened, and may not happen. It's a figment of your imagination at this point, something you've conjured up in your head. Try to stay in the moment, not projected out into the future, which is unknown anyway. If she gets sick, you'll both deal with it. If she becomes weak, you'll both deal with that, too. But try not to borrow trouble, it will make you nuts. Try to keep bringing yourself back to what's happening right now.
She has a lot of things going for her - she's young, strong, the disease was caught early, she has a team of state-of-the-art doctors and she's at a top facility for treatment. She has a loving caregiver. Day by day. This disease isn't a death sentence, not these days.
Thank you both...I know I am driving myself insane. I feel paralyzed with fear.... but you are right....none of these things have happened yet...and maybe they won't.....I hate that I am letting this get the best of me. I look at her and want to cry instantly....and then feel insane guilt because I am the one who should be comforting her. She is laughing and joking with friends on her phone...she is consumed with TV and I am sitting here panic stricken, silent, still...sigh. The nurse said they were going to start her Chemo tonight without doing the spine tap first and I said I am not comfortable with that because we were told they had to do it before she got any Chemo. So now they are waiting until tomorrow so they can do the tap and then chemo. It's not my fault they got her in so late. She got her x-ray at 10:30, and it's 12:30am and they haven't come to put her line in yet! I know I am not going to get much sleep here. All I want to do is take her home, but then I am scared to take her home! LOL God help me.....I've never felt so unstable!
Uh, sleeping in a hospital is a very bad joke...now you know.
Jamie, you can't run yourself into the ground, she's in good hands and you need to take care of yourself so you can be there for her. Get some rest, make sure you eat, take a walk to clear your head. Marathon, not sprint.
Hang in there, you'll get in a rhythm in another day or so, you really will.
I'm Sarah, I'm 31 yo and my Mom was dx'd with ALL 2 mths ago. I know you're incredibly scared and I can't say that I'm not also for my mom. WBF is really giving you some great advice if you're able to absorb it... and if not now, maybe keep re-reading it over the next week or so. It really is one day at a time. When my mom was first dx'd our whole family was flipped upside down and sideways. For the first week it was a whole battery of emotions and quite honestly I didn't know if I was coming or going. I felt like "how can the world be going on like normal when MY MOM is fighting for her life?!" The shock of it all is very consuming.
I'm not sure how often I'll be posting on these boards, but as someone else who loves someone close with ALL, maybe we can support each other. Feel free to email me outside of the boards if you want to share info/experiences.
Take good care and remember, one day, one hour at a time....
You have learned 2 quick lessons already with this fight against leukemia There is time and then there is hospital time and they are not the same.
Second the hospital is no place to get sleep. You have to take care of your self. I spent as few nights as possible at the hospital. It is really no place to get rest. I also understand the fear and uncertainity you feel. In my case on March 2 of this year I was on sabbatical in Boston and my partner was getting ready for an art show in Conn. By noon March 3 she had been admitted to the hem/onc floor wih a diagnosis of AML. She did not see the insides of our house for 6 weeks. FYI she is now recoverying nicely from an auto stem cell transplant, but it has been a trying 8 months ( 5 stays in the hospital with 2 trips to the icu) She has taken a walk all but 8 days( 5 of the 8 she was in the icu) in the last 8 months some as short as a trip down the hospital corrider and some as long as 3 miles. This is important as the chemo drugs are hard on the lungs and you want the lungs to have to do some work. You sould find a place outside your partner's hospital room to deal with your emotions. Your job is to be her advocate, caregiver and cheerleader, but remember it is her journey. Good luck
it does get easier
Thank you all for posting...Willow thank you especially for being there last night. I was in such a panic...a step short of a total mental meltdown. I guess getting here and really starting everything freaked me out and made it real. I let my head run away with horrible thoughts and fears of every little thing that will be done to her. They didn't end up doing anything besides a chest x-ray last night. At 5:30 am they came in to give her an IV for some blood...that irritated me because I knew she was supposed to get that picc line in her arm to avoid much of the constant poking...and then they poked her 3 times before they got it in. I kid you not, 2 minutes after they finally got it in, the nurse who does the picc line came in! I was furious but kept my cool. The gave her some meds to help ease her but they didn't kick in till long after the procedure was done. However I will hand this to them...she was comfortable and relatively pain free for that which shocked me. I am very grateful and realized now that I do need to calm down, that many many many people, from babies to the elderly, go through these things and worse every single day and many of them also come out on top at the end. After realizing that the picc line wasn't the absolute pain and torture I thought it would be, I feel a bit more at ease with everything else.... I know I might not get so lucky with everything, but still...it helps.
I had less then 2 hours of sleep...more of a nap really, and I will try to gather as much as I can throughout the day...just want to make sure they do what they are supposed to up until they actually start giving her the chemo. The only thing left is that spine tap. These nurses keep telling me they have 3 days to do it but the Dr. told us it HAD to be done before..even if they had her hooked up and it took the flip of a switch so to speak...it had to be taken before.
So anyways...I really do feel a lot better today mentally...stronger...determined ;o) and hopeful. So thank you for being there to catch me, especially so late at night....I hope I can return the favor to those ever in need. I'm sure there are more melt downs from me too come but today is a better day!
I'm glad to hear you're feeling slightly more settled today. Get some sleep, girl!!!
One thing to consider when you're advocating for your partner is that she may be in the hospital for a bit, and those nurses and other staff are going to be her "family" for the next little while. The last thing you want to do is alienate them - so yes, watch out for her, make sure she gets what she needs, but try to be as diplomatic as you can. I made sure those nurses loved me - I was a model patient, I smiled and said thank you, and they all wanted to take care of me as a result. But don't get me wrong, I was no pushover. I watched their every move and double checked everything I got and received an explanation of what it was and why I was getting it. When I needed to call in favors, I was able to do so because I had been firm but always pleasant.
Emotions run high at the beginning of treatment, consider how to get your message across without tromping on folks in the process. Those oncology nurses have a tough damn job - yes, they are human and mistakes are sometimes made but for the most part they are caring and knowledgeable. Your goal is to be diligent but kind.
If you need to vent, this is the place to do it.
You're right about the staff and everything....you catch more flies with honey. I don't think they got the message that I was as angry as I was....I did everything I could to control it because Maria is a lot more patient then I and would have been more mad at me then them... it's all so difficult and still too new...but I am trying to take it day by day, hour by hour, minute by minute even...
Bring them goodies! My Dad had the entire hospital mad at him when he did his induction. Same story, we got there at 6 and they didn't get the chemo going until 10PM. He was pi**ed and didn't mind letting everyone who came in his room that he was mad. The staff came into his room expecting to get griped at and the tension was getting unbearable. About the third day I brought in Krispy Kremes for all and it seemed to break the ice. If you go out for something to eat, ask if anyone wants you to get them something. The people I've had the pleasure of dealing with will really warm up to you if given the opportunity. My Dad now calls all the nurses his "angels" and loves everyone he deals with on a regular basis.
LOL That's a good idea. If you brought me Krispy Kreme's I would be your best friend! LOLOL I remember my grandma always having candy out in my great grandma's room for the nurses. She also tipped the CNA's which I don't think they were allowed to accept but they did anyway. LOL But I am flat broke. I quit my job to be her caretaker. And she quit her job because she is sick....we are working on getting her disability and SSI and think we are real close and the hospital is trying to help with things too. Been hard. We went from making a lot for two girls with no kids in an apartment, to nodda. But maybe I can think of something creative. I think the nurses like her...she is an easy patient!
Welcome Jamielynn to the club nobody wants to join.
I'm the caregiver for my wife who just over a year ago was Dx with CMML. I know a little of what you are going though the ups and downs of dealing with Dr and Hospitals. The long wait's the wondering if the Dx is right or not, where to go from here. We are lucky to have Dr who is very good and has others with the same problems as wife. I'm retired Rail Roader and wife works for the hospital we go to. She is on disability right now and has been on phone trying to get this working right. It's like the people who's job it is to set this up don't know how to as well. She has a lot of Personal leave time that she can use. But when she tried to use it they stopped her disability even though she would was told it wouldn't, more phone calls. She does not need the stress.
Take care of yourself also this can be so hard on us as well as our loved ones and we can't help them if we let this get us down as well. Venting is important as well, I go outside away from others and just look up and yell. Venting to God is prayer. After all he did some venting in the temple.. God came to me and lead me to AA over 28 years ago, so I'm very grateful for his love and forgiveness. I was lost and now I'm fund I was blind and now I see. God gives us mountains so we can learn to climb and cancer is a very large mountain and my wife and I are clawing our way up. Along with you and others on this site. Our prayers go out to you. Look for a support group they can be a lot of help.
Love Gene and Joy
Thank you Gene and Joy. My prayers are with you all as well. Insurance is a butt at times!
I have been so angry with God for the last few years and this didn't help but at the same time it helped immensely. I think I almost needed something to bring me back to him and I hate that this was the way, but I am grateful none the less. I knew my days have been a lot darker without him, but I can't imagine if I still..stayed away now going through this....those dark days would have felt like Christmas in comparison to the days I'd have with all this without him... if that makes sense.
my sister was diagnosed with ALL 26 months ago at age 48. I remember also feeling scared, heart broken and emotional. It was the scariest time in my entire life. I remember feeling helpless but never hopeless. I always tried to stay positive and always believed that she would get through this. The chemo was the worst. In the hospital for 5 days, discharged Friday and usually back on Monday. Then , thankfully, a full sibling match was found among us.
Transplant May 2009. 18 months later and things are pretty good. Some GVHD issues but life is returning to a new normal for my sister and all of us. Us caregivers will likely never understand what it is like for our loved ones going through treatment, just like they will never understand the heartache and fear of having to watch them suffer. There are many ways to get through something like this. I always thought prayer and meditation brought me some inner peace. I know of others who needed to step away from the situation every once and a while. You also need to take of yourself because you will be no good to her. LLS has support groups for caregivers as well. They helped me tremendously. I know there are folks on here who have not had good outcomes but thereare many who have. 2 weeks ago my sister and I walked the LLS Light the Night Walk. We raised 500.00 and she had her white survivor
shirt on and I had my red caregiver one. It was a long road to this point but it certainly is very very realistic to dream of the better leukemia free days to come. Blessings to you and your family during this emotional time.2010 Light the Night Walk, October 9th 2010, Campbells Field, Camden , New Jersey
I am sorry you had and are going through all of this. Love the picture! What beautiful people!
Glad she is doing well though! I am scared of relapses and possible transplants. I'm hoping it won't come to that but that if it does it will be successful. Light the Night was just real recent no? I wanted to go but then we went through all this process and well our lives where thrown in a hurricane it feels like! Every single thing that was every day normal has been tossed, flipped, etc. Crazy ride and we've only just begun! THAT is what scares me the most. LOL
Will keep you all in my prayers!
Maria's results from her spine tap came in today (well most of them?) The doctor said it looked real good. No sign of leukemia in spinal fluid or brain. SOOO relieved. I am secretly hoping/praying that given a few facts of her case, she will do very well and maybe it won't be a super long fight....but maybe it's wishful thinking. It seems like considering the case, she has a lot going for her and I refuse to ask the Dr. because this idea is one of the FEW things holding me and my hope together. Only time will tell and I know that anyone, no matter how good or bad the case is, can have something completely unexpected happen...also good or bad.
"I am secretly hoping/praying that given a few facts of her case, she will do very well and maybe it won't be a super long fight....but maybe it's wishful thinking. It seems like considering the case, she has a lot going for her and I refuse to ask the Dr. because this idea is one of the FEW things holding me and my hope together."
Jamielynn -- I wanted to reply to this specifically, as you need to get prepared for what is coming.
I saw elsewhere that your partner is being treated on one of the pediatric protocols, apparently. That's a good thing, as the pediatric protocols have been very successful. However, they are long, and they don't get shortened just because you may be doing well (i.e., no sign of leukemic cells). That's why those pediatric protocols have done so well.
Basically, they have created the pediatric protocols through trial and error. Seeing what gave the highest cure rate. Unlike with a solid tumor, they may be able to see if there is some cancer left. With leukemia, they can't analyze every blood cell, and if the chemo left only 1 or 2 microscopic leukemic cells, and the chemo was stopped, the whole process of the leukemic cells replicating endlessly would begin again. So, they just know that a treatment protocol of a certain length, with certain drugs, has a higher cure rate than other, shorter protocols.
So, I'm not sure what her exact protocol is, but i would expect you are probably looking at 2.5 years of daily chemotherapy treatment, with the first 7-8 months being the roughest, and then getting somewhat more manageable after that. (My son, because he was already a teenage male at the time of diagnosis with ALL, got the longer male protocol, so he had daily chemo for almost 3.5 years. But, he's 3.5 years OT now -- off treatment -- and in his senior year in college.)
So, good luck.
Thanks for replying..I guess I should clarify what my thought was though...lol...I know that we will be doing treatments for at least about 3 years but what I meant was, I am hoping that given the good results and facts of her case that she won't have to have a transplant to be successful and she won't relapse again and again if at all...which I am sure at least once it will happen. So I meant I hope her fight won't be 5, 6, 7, etc years of fighting relapses or needing one or two different transplants like some cases I read of....I can't imagine going through that.... I guess I get nervous to type what I feel here because...I know so many people are going through the most difficult times and for all I know that will be us too, but to post my wishes that it won't be might offend and I don't mean it too..it's just me....trying to express my fear and more so trying to talk myself out of the fear...does that make sense?
I know the road ahead will be a long, difficult journey, I'm just hoping it won't be too prolonged for many different reasons that it can be and that it won't be more difficult then it has to be....wishful thinking maybe but it helps my heart to think as I do. And I know that the fear of ever having cancer come back will be life long...and etc.
I'm thrilled to hear your son is doing so well! Congrats on that...
I hope you're having a better day. I think you might have found a coping mechanism in these boards. You at least appear to have recovered a lot of sanity! Your recent posts seem to reflect that, at least to me anyhow. I found these forums after my Dad's intial treatment, when I could have used them the most. What I did was sit down at the end of the day and write it all down. I've never been one to write daily or keep a journal, but I found the process to be therapeutic for me. I had a group email that I would then send out to keep all the friends and family posted on his progress. I did a pretty extensive edit on what they received, but they were kept informed. If he was having a bad spell, I asked them to call him and rattle his cage a bit. The calls helped him endure his "incarceration."
P.S. Tell Maria that people she doesn't know are out there pulling for her !!!
mdg, yeah lol, I am having better days...monday and tuesday night were real hard on me but I am realizing that in Maria's case things aren't as scary as I let my mind draw them out to be. She is doing real well so far and knocking on wood she continues through the rest of treatment. I know she will have down days of course but I am happy that so far she hasn't has any issues really with meds and the catheter, etc. And I am trying to trust that if something does happen, she will be in good hands to fix it.
The boards do help in two ways...one being a place for me to vent, get advise, opinions, support and another is being able to do all of that for others. It's easier to help others feel better but when it comes to myself...I'm not so good lol.
When night comes which is when I get more down, I have been reading. It helps a lot because when I get into a book I emerge myself into it as though I am part of it so it doesn't leave my head the ability to over think and get emotional you know?
During the day I am so busy running around this small city of a hospital to think anything! lol
It's a good idea about writing...I started a blog but I only have 2 long entries lol. Haven't had much time to keep up but I'm gonna start trying more when we are out of here. So how is your dad doing? Hope well. And thanks for your kind words. Prayers are with you all too.
Jamielynn, He's spending today in the clink getting blood and platelets. Other than that he made up a little of the lost ground from the last two months. Still some concern from the clinic that he is needing the transfusions more often than he did earlier in the year. Thanks for your kind thoughts and prayers as well. mdg
That's great news about the spinal tap - we always embrace good news around here. Now she has another thing going for her. I hope things continue to go as well as possible and you all get into a rhythm with the whole thing. You do sound more settled now, I hope that things are weighing a little easier on you at this point. I always found things a bit scarier at night, and seldom took naps during the day to make sure I would sleep at night...somehow everything seemed a bit scarier in the dark.
Anything you can do to distract yourself will be useful for those times when there's simply nothing else to do but wait...if it's a book, that's great. You might consider starting a new thread on the ALL forum - there aren't a lot of ALL adult patients, but we've had a rash of them lately and you guys might all gain strength from one another.
Hope things go smoothly from here on out and she's back out of the slammer soon!
Keep us posted, we're thinking of you and Maria.
Hey Everyone, I have a question for all caregivers and I am very ignorant with all of this so if I sound like a dreamer, forgive me and don't be too harsh.. LOL
Do any of you know or are any of you currently working from home or know of legitimate ways too? I am not one of those people looking to get rich and I am not even expecting to make an average monthly salary...I just need ideas for ways to bring in SOME extra money even if it's $100 a month, it'll help us. The only thing is, I don't have a pc, I have a MAC and the few opps. for customer service jobs at home require a PC. Although I guess I could find a way if I got that lucky. Thanks for any ideas!
I posted the following in her thread in living with...and I am re-posting her to really let it out...
I am sick to my stomach as they posted her pathology report on mymdanderson.org and we never knew the results...the biopsy was taken 11/8 and she has another today... well the blasts are at 27%. I have not shown her and won't... I don't know what to say, think, or feel as he told us that day when he didn't have the results back yet, that he was certain it would be like 0. So I guess she will be doing extended induction or starting all over? We will find out this week I assume.... But I think the % is more then that because in her first biopsy report they counted 500 cells at 69% blasts and this report says they counted 200 cells at 27%.
I am so scared now, all over again. I was in SUCH a good place up to now mentally....
On another note...she was in the hospital last night because she got ANOTHER clot in her arm with the PICC line. Now she fell Friday night and woke up the next morning with the swelling but it got worse so they did there thing at the local hospital and the clot is big...it's almost the length of her freaking PICC. yeah.... So they did blood thinner IV and took it out this morning, her arm looks as if it's about to burst. I don't know what he is going to do, but putting something in her chest is not an option to me...if we are having this big of a problem with her arms, I would think a problem in her chest would be even more risky and serious...
so much for luck. I am sick...
What the HELL am I supposed to do!? Sorry for the language but REALLY!?!?! If you have been reading my post you have to see how far I personally have come mentally and I know I have big time. I felt so strong, confident, sure, and in control up until literally 20 minutes ago. I sit there day after day wiping away the tears, re-assuring, and swearing it will all be ok...and then I see this. How am I suppose to feel? I feel horrified all over again... does this make her chance of success significantly less? What does this mean long term? Both of her Dr's were so damn sure that she would be in remission already and as a result would do so well because she already has been, so now what? God I hate this! I am SOOOOOOO angry! I want to scream at the top of my lungs and beat the crap out of something. And at the same moment I want to curl in a ball in a tiny, secluded corner....
I am anxious and yet scared to hear what he has to say NOW....
Take a deep breath and relax. You are about where I was with my Dad this time last year. He started induction on the 18th of Nov last year. After initial chemo his blast count increased. At 71 the doc says to go home and enjoy his last Christmas, because another round of chemo at his age was 98.9% sure to kill him outright. You want to talk about a hard one to swallow. That nugget of info really hung in the air during Christmas last year. I mean, what do you get a guy that won't be around long for Christmas presents? Pretty bleak outlook for us last year. Well, Dad is still here, has his own place and is getting himself to his appointments and treatments!! We found him a study drug that has not cured him, but he is living with it pretty well. There are options and you need to ask the doctors about all of them. They will set her up for her next round and get a handle on things.
Consider getting rid of that picc line. They are probably going to insist on it anyway since it is causing problems. My Dad got his port put in and it is no big deal to him. Hang in there....
"On another note...she was in the hospital last night because she got ANOTHER clot in her arm with the PICC line. Now she fell Friday night and woke up the next morning with the swelling but it got worse so they did there thing at the local hospital and the clot is big...it's almost the length of her freaking PICC. yeah.... So they did blood thinner IV and took it out this morning, her arm looks as if it's about to burst. I don't know what he is going to do, but putting something in her chest is not an option to me...if we are having this big of a problem with her arms, I would think a problem in her chest would be even more risky and serious..."
When my Mom was admitted for treatment of her AML - her hematacrit was down to 16 .. her new oncologist said he was amazed she hadn't fainted, passed out or fallen prior to him admitting her. They gave her 2 rounds of platelets in the clinic while waiting for a room. Instead of a PICC line the oncologist ordered a hickman instead .. he said it would be safer .. and there were less chances of something going wrong in her upper chest, than her arm, where the line could blow out more easily. An Anethesiologist inserted the Hickman and all in all .. it was the right choice. Her nurses took very good care of it -- and when she was home she'd flush it once a day and then had visiting nurse come once a week to change the caps etc. Hickman and central chest lines are much safer than you think. As they aren't in the arm, they prevent sticking patient for blood draws and labs .. as well as inserting additional IV for chemo/fluids etc. The thought of the initial procedure is scary though.
I hear you, in not wanting to share the lab results with your partner .. but as her partner, she does have the right to know -- in the end no matter how scary the unknown is "knowledge is power." I found the oncology social workers on the floor to be life savers .. they literally saved my sanity .. on more than one occasion. No matter if it is ALL or AML .. new diagnoses are frightening. Take things moment by moment .. fast forwarding to the inevitable will only cause more stress, panic and heart ache. I also cannot express how important taking care of yourself is .. it's paramount. Things will most likely get worse before they get better ... rest and sleep are important. Sleeping in hospitals I agree, is not recommended or ideal. Do you have someone or somewhere to stay close by? If you're not sure where to look -- ask your social worker .. as when I was with my Mom at MGH in Boston there were several low cost lodging options. My Aunt stayed at a convent in back bay that let's out extra rooms .. for about 20.00 a night .. or less .. and they had a garden with benches .. as well as quiet room. She'd leave for a few hours, take a nap, shower and come back .. we'd then switch off.
I hope this finds you better .. sending healing energy your way. I was and still am my mother's prime advocate, cheer leader and healthcare proxy/POA .. she switched it from my brother to I .. when she realized he was/still is not in a place where he can handle her illness. It will be a year since her diagnosis in January. I've learned a lot in the span of a year .. it also helps to read up on protocols .. be involved in your partner's care .. my mom's oncologist said I'm amazed at how pro-active your daughter is, in wanting to know about all that's going on .. because I have many families where that's not the case. Speak up, ask questions .. voice your concerns .. calm energy ... is being sent. -- Warmly, E
I decided to post here because this is more about me...will post on Maria's thread tomorrow after we get bone marrow results.
I feel like I am on such a roller coster. Most of December I was ok, but at some point for a couple of weeks, I was doing HORRIBLY emotionally. Like, don't judge but I was thinking really selfish thoughts of my own suicide and it scared the heck out of me. I just selfishly kept thinking, IF she doesn't win this, I can NOT watch her go. And I also kept thinking and still do, that what is the point? There is WAY WAY WAY too much pain in this life I honestly couldn't imagine a more "hellish" place to be. I am tired of the aching pain in my heart and soul and it's not worth it. Too much bad in this world and while I hear of greatness, I haven't been shown much of it...
I pulled myself out of the suicidal thought slump and did ok again and am doing ok now, but I am filled to the rim with major anxiety. I just feel sick to my stomach all the time, I fight sleep until I absolutely can't stay awake, a few weeks ago I left her for the first time since this started to go grocery shopping alone and I nearly had a panic attack because it would be more then a few minutes away. She and her family don't want me to go back to work yet, and to be honest I am not ready to leave her for that long myself.
I KNOW with everything I am, that she WILL win this, but I feel sooooo unsettled and I can't pinpoint why. I get scared everytime she starts a new drug, how will it effect her? I get scared with every bone marrow, what will the results be? I get scared to be happy for even a second of "good news" because what if she relapses? What if I run to the store and something happens to her that I could have prevented, even if it was just a fall?
And then I feel so unbelieveably lonely! She is not the same, which I know is normal to a degree, but it leaves me feeling so alone. Her family has seen her 3 times since we started this! That is a whole other issue.
I feel so insecure and vulnerable. She used to make me feel so safe and untouchable and now I feel like I am on my own for the first time plus one if that makes sense. I went from a care free girl in her very early 20's who was soooo not responsible to this 80 year old feeling alone woman with this HUGE responsibility on my shoulders.
I miss my family soooo much. I am tired of being scared, tired of being strong, and tired of being alone. But I wouldn't trade any of this...she is so beyond worth anything I have to go through and I wouldn't trust anyone else with her care. I feel Like my insides are a hurricane! I am screaming as loud as I can and no one hears me. When I try to talk to someone about it, it gets weird, the topic gets changed, I can't truly open up. And I know there are social workers at the hospital but those people.... MDA might be advanced with technology and meds but they lack with personable staff! I do better when we are home, but the day before to the day after we arrive and leave I am an emotional wreck.
Our lease is up in April in Austin and Maria was thinking about moving to Houston but I don't think I can actually live IN Houston. It would make me have a nervous breakdown because I can't "leave" it behind, it'll be in my face non-stop. Like living where you work.
She will take longer on this too because she was a slow early responder. She will have to repeat two of her phases, which I think is good no matter what, but the fact that it adds 3 months before we get to maintaince is a bit dis-heartening.....
I'm gonna stop now.
I too have had all these fears, only it was for my wife. I would go shopping and feel I needed to rush home to make sure she was OK. After a while it became easier but I would still have these fears from time to time. It's part of the graving process. I had a good support system as I'm in AA so I had friends to talk with about my fears. Your not alone we are here for you to vent with. It's hard to be a caregiver for someone who has cancer just the word puts fear in our hearts. Every time she hurt I hurt too we shared the pains and held each other and cried. When there was improvement we rejoiced in it also. There are support groups for caregivers see if you can't find one in your area. Ask at the Dr office they will help get you into one.
I am so sorry you're having such a difficult and horrible time of things. You mentioned you were feeling suicidal but aren't now -- but were
still recently. From the sounds of all you've posted, have you spoken to anyone about feeling depressed? The anxiousness, stress, not sleeping,
fear of being away from your partner and with everything going on .. it may benefit you to speak and meet with a therapist/LCSW -- someone who
is qualified to assess your entire "whole" well being -- evaluate & discuss anti-depressants and other supportive treatment options .. most of all, the
importance of knowing there is someone there to listen. I've found the oncology social workers on the floor to be quite supportive, especially to family members and their loved ones/caregivers. Please give them a chance and the benefit of the doubt. I know when my Mom was in the hospital for her "induction" period and chemo treatment (a year ago last January 2010 at the beginning of all this) the social worker on the floor had a caregiver support group that met once a week in the lounge. I was reticent at first, but did eventually go to a few meetings and found them helpful, if only to be in the company of others in the same position as I.
Things are going to get much harder and worse, before they get better. If you're truly going to be there for your partner, taking care of yourself comes first, it must, without a doubt. If you're worn out to the point of not coping, it's not going to be possible for you to be there for her, when she needs you most. As tough as it is, and it's horrid, I know .. I was in your shoes a year ago .. facing all of this with my Mom. I felt scared, thinking the worst, and well, the thought of losing her was real .. and gosh I'm still not sure what I'd do if something happened to her. What's key here is I made the choice, to be there for her. I also met with my therapist once a week, asked my friends from work to look out for me .. there are a couple of friends (former co-workers) I still keep in touch with .. who said to email or call (after work hours or anytime really) if I needed anything. I took them up on their offer .. a few of us began meeting once a week after work for coffee and knitting, conversation .. it really helped take my mind off things .. and for that hour or so, I didn't think about my Mom .. I let myself laugh, be silly, serious, cry what have you .. but never felt guilty about giving myself that time for myself. It's key! At the rate and downward spiral you're going, I fear the worst and that you'll completely emotionally, psychologically burn out. Please, call your family, a friend .. ask for the help you need to get through this. Right now, your partner can't do this for you .. it's something that must come from you .. as she's counting on you! Care giving is a self-less loving act of compassion .. it means you'll be there for your partner to support her, love her, laugh, sing, be silly .. and cry with her .. to be her voice when she's not able to .. to interact with her doctors and support team .. to learn as much as you can about her condition .. in the end allowing you both to make the best decisions possible with regards to her care and treatment. A care giver is also a cheer leader .. as there will be times when your partner is depressed and feeling like giving up herself. I organized an on going card writing project for my Mom via our friends and family .. from near and far .. as I knew it would cheer her up .. and let her know people were thinking of her .. and loved her .. cards came several times a week .. and were delivered via hospital mail right to her room. This little sunshine of a project still continues .. it's easy to set up .. and is an inexpensive way for people to help .. and support you both. I posted something to my facebook page and also sent email update out to her friends and family ..
I sense and hear such despair in your voice. Living through leukemia and cancer is grueling, painful and heart-wrenching .. the thing that kept me going and still does is inner strength .. and a belief in something bigger and larger than myself. But most importantly, the notion that asking for help does NOT EQUAL FAILURE! Asking for help = strength .. so please reach out to those closest to you (in your own life who can help as well.) I am concerned though, from reading your latest post -- because I'm hearing from you only how this has affected you and to such a degree .. I sense from your painful words .. this is about you .. the thing is .. if you have any chance in getting through this .. it may help to also put this in perspective of your partner .. how is she feeling? what is she worried about today? how can I help ease her fears .. does she like a particular author .. maybe I can read to her for a while .. maybe see about borrowing some DVD's to watch together .. how can we work together to create a healing and relaxing environment .. with what resources we have .. I leave you with this .. in the meantime I'm sending much love, understanding and support .. know I can be reached here anytime.
Hang in there .. ox
Thank you for the replies and concern. I am just anxiety stricken because our lease is up in April and we had to renew or give notice this weekend and Maria thought it best to give notice and move closer to Houston. I disagree because as long as she keeps doing well, our trips will be less frequent. We will now go once every 10 days for awhile instead of weekly. And Houston to me now represents cancer. Being there brings me to the begining and all the fear and sleepless nights. And I love Austin. And even though number wise she is doing well, she lately again is having too many days where she is in bed all day. That takes a toll on me mentally for many reasons. And it's hard. But it will pass.
Alot of it too, is that it's just hard not being able to go do things either because of money, or primarily because she doesn't feel well enough. But I have re-discovered scrapbooking and have been by pieces to add to what I have and am going to start doing that agin, I think it will help take my mind off of things.