Staying Positive

[HVAC]

I am having a harder time staying positive these days but I find it is so important. Today I watched my hair fall out even though I shave my head a week ago. My shower is covered in little black hairs. I am not Pollyannna and never will be. I think acceptance and adaptiblity are crucial in facing any illness whether it is MS or a life threatening Cancer. I can't taste so eating is no fun. Everything tastes really bad because of the chemo and I get sick even drinking water. Still I do what I can to survive. I even take a sponge full of water at a time. I have to have goals to get me through the worst times. When I am really sick and vomiting from Chemo instead of thinking about the pain and discomfort and the fear of death I think about when I will ride Clara again. I make little goals like brushing my teeth, taking a bath, walking to the mail box. When I can't hang on for myself I think of all those around me who want so badly for me to make it. Sometimes I drink water for them when I just don't want to anymore.

I have to have a sense of humor even a sick one at times. It keeps me going. I have to have dreams for the future. I have to adapt to my circumstances which change all the times. I have to tell myself it won't all ways be bad even when it feels that it will be bad. I have to have hope. I have to live on the power of love. I have a lot of people who really love me and would miss me if I were not here. I have to think about that when I am really sick.

Distraction is my best friend. I have to distract myself from pain, and fear, and sadness. I can wallow in it and let it sink me or I can get rid of the negative as best I can. I am in the fight of my life and it is not easy but the lessons I have learned are making it easier. People say I am calm inspite of what I am going through. Living as much in the moment as I can helps. When the moment is bad I make goals to either improve it or to look to a better time.

The other night I was in real pain and I was dangerously dehydrated and had been throwing up violently for several days. I made an action plan. I decided to meet with the pain clinic and to ask if there was anything to be done for my symptoms. I decided I had to drink even though I no longer wanted to. I started with mouthfuls of water until finally I could drink a whole glass several days later. I thought about things in my life I wanted to do, things I still want to do and things I have never done. I started a bucket list. I also thought about getting my affairs in order, wills, living wills and the like. Things I have put off. Doing these things has taken some anxiety away, instead of dreading it. I have been real honest about how I feel about the Cancer and my MS. I do not sugar coat what I have but I also realize there are worse things. I am grateful that I am as well as I am in spite of things.

I thinks bout others in my life. It is easy to get wrapped up in yourself. It is not just me who has MS and cancer it is my family and friends. They suffer with me for better or worse. It will be them who is left to mourn not me. It is humbling to have people tell you how much you mean to them and how they do not want to lose you. I realize I have a responsibility so many people. I do not have the luxury of giving up.

Sometimes I fight this awful cancer purely with anger. Someone gave me a hat which says "F----" Cancer and that is how I feel. I am not happy about the illnesses I have been given, but I am going to use every tool in my box to fight them with.

I can be miserable but I do not want anymore pain than is necessary. I can think of a lot of worse things. When I was diagnosed with MS I was crushed but I learned it really was not the end of the world. Now I am facing a very deadly, painful cancer but that is not the end of the world either. I have to break things down sometimes moment by moment. I have to lean on others. I have to distract myself. I have to laugh especially at myself. I have to figure out what I need and then work on getting it. So far my problems do have solutions for the most part. I have lots of people who love and care about me. I can break things down into workable pieces.

Alex

[LisaJF]

I've been away from the forum so long, I did not know you were diagnosed with Cancer.  I don't even know what type you have (forgive me for not rummaging through old posts at this point to figure it out).

Regardless, I extend my deepest empathy in your battle of keeping up your spirits, taking one day at a time, moment by moment as you say, knowing you are loved and needed, acknowledging the mere fact that you not only have a responsibility to yourself, but to others as well.  You said it yourself, they are going through this too.

I am sorry that you're going through so much at this time.  I wish there was something I could say or do to make things a little better. Perhaps acknowledging your battles, discomforts (physical and emotional), and the fear of the unknown.

I think you're handling things quite well as far as I can see through your written words.  Although, I realize we all are human and we can't ALWAYS be strong every day of every second of our life.  We need people to validate, to share, to care and empathize.  

Please know that I am praying for you and hope you can be at a point where you're comfortable and not in pain.

Sincerely

Lisa

[anon07072023]

Alex, you are going through so much.  It's thoughtful of you to let us know some of what you are going through.  There are really no words that I can say.  I hope that you can find comfort and enjoy life.  It's nice when you can think ahead of when you can ride Clara again.  It's good to keep looking forward and setting those small goals.  

We're all here for you.

Hugs,
Kelly

[rendean]

Alex,
As always you  amaze me.  You are in the most miserable state you've ever been in and yet you have just written a beautiful piece to articulate what  you  are experiencing. Your will to continue to enlighten and help others still shines brightly.

Everyone here needs to take time to read this and truly understand the human experience in the circumstances yo have been given.

Sending ripples of soothing thoughts and gentle hugs,
Ren

[tingletingle]

You are a wise little grasshopper in the face of extreme circumstances.

I am saddened by the pain of your physical condition but in awe of your mental perspective.

You're in my thoughts and prayers.

[supermum_ms]

Thank you!

Thank you for keeping it real, for not glossing over the reality of what your going through, and for still teaching us how to cope through the worst of times, with strength, compassion and spirit.

You and yours are never far from my thoughts.............JJ

[ku111]

There are people here, there and everywhere that are thinking of you.  I hope that gives you a smile.  Thanks for the update, it was beautiful, honest and gave me a lot to be thankful for.  I am thankful for you.  Thinking and praying for you.

[beema36]

Oh Alex you are a strong and amazing woman!  Thank you for sharing with us and also inspiring me on a day that i needed it so.
Keep fighting. My prayers are with you always.
Beema

[meg321]

Oh, Alex, I have not been on much either and I didn't know about your cancer.
My heart hurts for your pain but your attitude is right on...staying positive will get you well.

Your note was so beautiful and you just helped me so much.  I have been feeling sorry for myself and you have helped me get out of myself.  You are an amazing woman, I am not sure if I could do that.

But I just had two family members go through stage 4 cancer and both were very positive and got well and are back at work.  It was absolutely a miracle and I felt that from you too as i read your post.

Will keep you in my prayers...

love, meg

[tjlmoo]

Alex,
I'm still lifting you in prayer and wishing the Lord would lessen the symptoms from chemo and MS and that he will continue giving you the strength to be as strong and amazing as WE ALL know you are.

Wishing you a blessed day and praying all this sickness passes quickly!
Hugs and blessings,
Tammy:)

[bubbles_04]

Thank you Alex for sharing this. This is a beautiful note. I feel the love and strength from it. I'm so amazed by you, you are an inspiration. Keep fighting Alex, all of your cyber friends are routing for you too. Keep fighting it one gulp of water at a time, I'll be thinking of you.

Hugs to you, you amazing person! I feel lucky to have met you!

I am hoping for some pain relieve for you soon.

Kat x

[debgen]

Hi Alex,
I am so sorry that you are going through such an awful time. Your amazing words have helped me more than you could know. I have beem wallowing in self pity lately, dealing with the deaths of my brother and mother while suffering through a lengthy relapse. I feel ashamed of myself because reading your thoughtful message I realize the importance of taking things one day at a time and count the blessings that I do have. You are a truly special person and sincerely in my daily prayers.

(((hugs))))
Deb

[HVAC]

No one should feel ashamed of where they are. Your problems are just as real as mine. We all have things to deal with. I know folks in a lot worse shape than I am in right now. I have just learned some lessons on how to cope.

Tonight is hard because the nurse called in the evening to say she finally looked at last weeks blood work today and I am too sick for chemo. This kinda ticks me off. She had a week to look at the blood work. Also I was so sick and they kinda did not care in the last couple of weeks. Now they look and my blood work and that is all that matters. When do they listen to me when I say I am really sick? I think my blood work tomorrow will be better than last week because I am feeling better than I did last week. Oh well if I have to wait on chemo I have to wait, nothing I can do about it.

Alex

[Dagun]

Alex, you have so amazing way of thinking (and writing), you are such an inspiration. It is awful that they are not noticing or dealing with your pain, I hope that they will find a way soon to help you with it. My thoughts are with you.

My best,
Dagun  

[HVAC]

I got my chemo today.The clinic was overbooked and trying to bump me but I would not let them. They signed me up the day before a holiday so it is on them to do their jobs. Also the nurses not only allowed a super religious patient and her husband to approach me during my infusion but they got angry at me for ignoring them. I finally got fed up with one nurse telling what the woman had said was important. I told her I had ignored the woman because I do not share her religious beliefs and did not want to say anything I was thinking because it may hurt her. The nurse was so angry with me for saying this. My nurse for the day jumped in and told me I better change my attitude and get God if I wanted to get better. I was so pissed if I had not been hooked to an IV I would have walked out. Instead I told the nurses and the patients listening what I thought about God. They were pretty angry at that point. I grew up in a abusive house hold with a minister father and atheist mother.My father was not as nice when people badgered him about God and Cancer. He told them off when he was dying if it was brought up. When I go to a hospital clinic I want to be treated for a medical condition and nothing more. Needless to say since I was so upset the chemo made me sick right away. I try to respect others and their beliefs. I will keep quiet until people get in my personal space. I will evade and then if that does not work what comes out of my mouth is pure venom.

This all happened when my husband had taken a walk and I was quietly listening to my IPod nano and doing my visaulization. My husband had gone for a walk and was angry when I told him. I leave the other chemo patients alone. It is bad enough to be packed in like sardines with patients and family members on top of each other.

I think it is great when religion works for others but my beliefs are personal and I do not discuss them with others. I would not dream of walking up to someone and trying to push my beliefs on them. I think it is unprofessional for a Cancer Clinic to not only allow their patients to preach but to encourage it and to shame the person who does not want to be saved.  I made it clear when I arrived that I was not in a good place and needed to be left alone as much as possible. I was happy to discuss the chemo with the nurses but nothing more. I was even sick of explaining why I can't eat, drink, or go to the bath room easily. These people can't very from script and my case varies big time.

At least the chemo is bringing down my cancer marker to an acceptable range. That is really all that matters. I only have four more trips to the clinic. After that I am following elsewhere and only coming in when there is no way around it. I really hate most specialists. Again no Doctor today.

Alex

[anon07072023]

I can totally understand what you are saying.  I wonder if you could make a complaint about them.  They're certainly not making it a comfortable / stress free environment for you.  Especially after you said that you were sick right after the chemo.  They think that they're helping, but they're not.  
It's very arrogant of them to push that on you - and then you're all hooked up, so you can't leave.  

We were at a cancer walk a few yrs ago and they had candles set-up along the route for people who had passed away from cancer.  There was one there for my mom & my dad.  There was a group of students that was making their way down the route praying over each candle.  When they came to my parent's candles they wanted to pray with us over the candles. They were pretty pushy and adamant that it was something that they HAD to do. I wouldn't let them.  They didn't know my parents. And I don't know them. I stood my ground.  Call me crazy..... Your story just reminded me of that.  

Glad that you were able to get your chemo today - not so glad about how your beliefs weren't respected.

[Lulu54]

Alex, if you had the strength to voice the problems, by all means do. Do it in a formal complaint and go way over the top of the chemo clinic.

If you don't have the energy, that is certainly understandable and I hope that the staff can respect your wishes to be left alone.  You don't need this .....

[maxthecat43]

Hi Alex,

That was so inappropriate!  I do have faith in God, but what you went through today would have made me mad too!  The behavior of a some, who call themselves Christian- belies the true meaning of the word.  I don't know what branch they represent, but it doesn't matter...  Their behavior was reprehensible.

Tammy

[Guitar_grrrl]

Alex, you are such an amazing woman!  I love the way you write - your honesty, your being present, your mindfulness.  I wish you weren't feeling so bad.

Hopefully you'll be able to visit Clara soon. Bring some veggies for her, and give her a big pat for me, too!

((((Alex)))), sending good thoughts from across the country.
Lisa

[debgen]

Oh Alex, the people at your chemo center should be ashamed of themselves :( I am so sorry that you have had to endeur even more pain.you are an amazing person who is a true inspiration to all of us. I hope that you stay well enough to continue the chemo. Keep fighting. I sure hope you get some relief soon. Please know that we all care about you and sending positive energy your way :)

Many (((hugs)))

[debgen]

Oh Alex, the people at your chemo center should be ashamed of themselves :( I am so sorry that you have had to endeur even more pain.you are an amazing person who is a true inspiration to all of us. I hope that you stay well enough to continue the chemo. Keep fighting. I sure hope you get some relief soon. Please know that we all care about you and sending positive energy your way :)

Many (((hugs)))
Deb

[teenyturner]

Hi Alex, I'm gobsmacked to hear that not only did some unwanted strangers try to talk God to you but the nurses too....!!!

I was a nurse and part of our oath was to be impartial, unbiased, non judgmental and tolerant of all beliefs, faiths and the right to not have a faith.

These nurses need to be reported to the nursing registration authority.  Christianity is not the only religion.  Are there no Jews, Bhuddists, Muslims etc in that centre having chemo?

I've been in the position where my blood counts have been too low to have chemo.  I've never once had a nurse tell me this, i was always given the courtesy of being given this news by my doctor so we could discuss the timeline for the next cycle of chemo.  On the few occasions when my doctor wasn't at clinic another doctor would cover for him and tell me the news.  

I find it quite extraordinary that you are being treated like this.  You should not have to tolerate nausea and pain either.  There are so many extremely effective medications out there for chemo sickness and GI problems, you really need to sit down and make your doctor listen to you.

I feel blessed that I had a good doctor handling my chemo, I never once vomited and very rarely felt nausea, drugs are wonderful ;-)

Hang in there, it won't be long before your treatment is over and this will just seem like something that happened to someone else.  Meanwhile iPods, iPads and books are excellent at making the time go by quickly while you're having Tx.

Wishing you all the best.

Chirley

[HVAC]

Chriley,
I asked my nurse about riding. She said oh have you talked to Dr. B about it his daughter has a horse I said yes but I have only seen the man once the first day when he said he was doing surgery. She said you will see him after you have had all your chemos. The nurse was trying to bump because they over booked the chemo the day before 4rth of July. My nurse is the manager so she figured I would be easy to bump a week or so. She thought wrong. If they do that I will skip a chemo all together I am not drawing this out.

They told me I can't ride so I went riding today and had a great time. Then I gave Clara a bath. I feel 100% better. Of course Clara stepped on my foot and I will lose my toe nail but I do not care.

My new attitude is as little contact with this clinic as possible. I am not calling them no matter what and I am only going in for four more chemos and then that's it. I am not going in for follow ups I will go somewhere else.

If God gets brought up again I am going to write it up in my State why health care advocacy blog. I think it is great that people have God to get them through. People just do not know my life story growing up in an abusive home with a father as a Navy Chaplain. They do not know the abuse I suffered in State hospitals when my pediatric MS was not understood so I was locked up as a child as mentally ill. Where I was raped by a doctor and beaten by nurses. I do not like anyone in the health profession to touch me and I have subject myself to it all the time. They do not understand I am between a life threatening Cancer and crippling MS. They do not understand this Cancer pushes me out of MS treatment. They think I should be thrilled to be alive. Sometimes I am. "Blessed" is not what I am feeling. Especially when I am getting such bad care.

Alex

[saucygrl]

Alex, I'm so glad that you got to ride Clara today!!  People drive me absolutely insane when they try to force their beliefs on me.  I have my own faith and feel closest to it in nature.  I do my best not to judge others and it drives me nuts when they don't offer the same!  No one can possibly know what we have going on in our lives or our internal thoughts and feelings.  I'm sending positive thoughts and hugs your way!  You are such an inspiration to others and those people don't have an inkling of who you are.  Give them a good swift kick if they bother you again!

Chris

[Sarahsmom46]

Alex,

You are so dear to me as a friend and confidant.  Well before you were diagnosed with cancer you were sick and didn't know what was wrong with you and yet you were still positive about things.  When I was down, sick in the hospital and even now during my current hospitalization, you try to get my spirits up even though you feel so terrible.  It takes a special person to be able to care about others even when their own situation is so challenging.  

The other day when we were on the phone and I had to get off because the doctor had just walked in, he looked at my face and asked what was wrong.  I told him that I am going to stop feeling sorry for myself because i was just getting off the phone with a friend who is in a much worse situation.  He said something about the continuity of life despite difficulites or what not and I told him how hard you worked to keep a positive attitude with what you are going through.  He said that sometimes when we have so much stacked up against us we somehow find a way to see good.  It is not necessarily human nature to do so, but for those who can do it, they are very special. He said that I am fortunate to know you.  This is coming from a doctor, not what we would expect to hear, right.  

I hope you can still keep finding the good in life even if it is just looking at Grady and laughing when he does something silly like tear up your underwear or socks and bring them to you to show off.  (Not sure he does this but dogs do like to do these things).  :)  

You have so many people who care about you and what you are going through and you know you can call me anytime you want and I'll help you find the positive as best I can.  We are here for each other.  Hang in there my friend.  

Love and hugs,

Julie