[Obayan]

This is me.

by Obayan on Tue Nov 19, 2013 3:37 pm

I am wife to a deceased husband.
I am mother to a grown child.
I am homemaker to an empty home.

This is me.
I will not give up.

Ms. Sharon Hardy

This is me.
I am strong.

I grew up living in a life full of torture, abuse, pain. I’ve been in a fire, fallen out of a moving vehicle, raped, mugged and beaten down to where life no longer had any meaning. My parents broke my bones to show how insignificant I am. I was denied health care to show I wasn’t worth the cost. As an adult, I have a multitude of health issues with my heart and psyche. On June 24, 2013 I was diagnosed with cancer.

This is me.
I am not broken.
I am strong.
I am a survivor.
I will not give up.

On June 24th, I was diagnosed with multiple myeloma. I had never heard of it before.

It actually started when my husband was sick. My husband had diabetes. He was a very good man but extremely obese and stubborn. He didn’t exercise. He didn’t eat right. He didn’t always take his medication. His diabetes lead to neuropathy, retinopathy, cellulitus, sharkot’s foot, lymphoma and lupus. He had his left leg amputated. After that, he developed kidney failure. At the same time, my teeth began to break. Every time I ate, my teeth would break and chip off. My husband was dieing. How dare I take away time and money going to a dentist. My issues were set aside. Not by him, but years of my own conditioning in how I think and where I believe I rate in the scheme of things. It took almost three years before my husband died of a massive heart attack. By that time, my teeth resembled that of a long term meth addict. Before you ask, no. I never took drugs. After he died, I isolated myself. I cut myself off from friends, family, everyone. I can’t even remember the first few months after his death.

Life has a way of moving on and that’s exactly what it did all around me, without me, for 4 years.

I couldn’t sleep. I couldn’t eat without pain and vomiting. I thought it was normal after spending so long suffering and growing older. It got so bad, I finally went to a doctor. He said I had Celiac. He gave me medication and I threw out all of my food, pots, pans, storage containers, etc that might possibly have gluten in or on it. It was quite expensive replacing everything in my kitchen. The medicine didn’t work. They did a colonoscopy and said it was not celiac but instead was gluten intolerance. Different medicine. It works for the most part. At least I can eat some things again. I cheat sometimes, but not much and not often. And I pay the price when I do. As part of the blood tests before the procedure, the doc did a random protein test. Normal he told me, was between 200 and 400. Mine was 2800. And that is when I stepped thru the gates of hell.

June 24th, 2013
Day 1

The first doctor I saw was a well respected oncologist/hematologist. I was scared. Terrified really. He smiled a big smile and talked to my grandbabies and introduced himself to me as my doctor. He had blood drawn immediately. He did a physical exam that while felt hurried, felt safe. Felling safe is not something that comes naturally or easily to me, so to have accomplished this so quickly speaks volumes of the doctor. We waited a half an hour for the rushed blood work results. The doctor said I need a bone marrow biopsy, and x-rays. We do the x-rays first. Full body x-rays. Ok, that was easy. During the physical exam I told the doc about the colonoscopy where they found elevated proteins and also osteoporosis in my spine and legs. I told him about the pain in my back and how it was getting more frequent and quite painful. After the x-rays, came the biopsy. I was taken back to the exam room. A nurse and her assistant came in. I thought she was going to go over the procedure with me and schedule a date. She starts setting up a tray. Here comes the fear. She tells me to undress from the waist down. I obey. There a shot to the hip. I’m not good with needles, but I did ok. At least I didn’t jump. Then she does the biopsy. Pain like I’ve never felt before. I’ve been thru a lot in my life. I served 9 years as a soldier during the time of Desert Storm. To say that I was afraid… to say that the pain was more than intolerable, it means something. She got down to the bone. I could feel her hitting it over and over again to break it open and get to the marrow. She aspirated. By this time, I was tear streaked and screaming and begging her to stop. I felt like I was going to pass out. She began to get the sample of marrow. She had to do this FIVE times to get a viable sample. For over an hour I had lain on her table begging her to stop and screaming to God to please just make it stop. I had a pillow over my face to muffle my screams. The assistant was at my knees holding me down on the table. The nurse was telling me to go ahead and scream. It’s a soundproof room and nobody will ever know. 

June 27th, 2013
Day 3

One of the nurses at the Cancer Center is walking me back to an exam room. She tells me, “I heard you scream.” By this time, I’m walking with a cane. The pain has become so unbearable that I can’t hardly walk. I mention this again to the doctor when I see him. He examines the site of the biopsy. It is bruised and painful but he says it’s healing nicely. My sinuses are a bit congested. I have a bladder infection. He tells me I have cancer. Multiple Myeloma. I bring up again the pain. The cane I am using was my husband’s. It’s not very stable and slides easily on the floor. He gives me a prescription for a new cane. I need more tests. He orders an MRI of my lower spine and a CT scan. He and his nurse walks me back up to the front of the center. They are both laughing and telling me that there are no sound proof rooms in the center. Everyone heard every scream, every plea, every word. I’m glad they found such humor in my humiliation. I wanted to disappear. I’ve just been told I have cancer and I want to die.

I came back that Monday and did the CT with no problems. Then they took me down for the MRI. I never had the slightest clue I was claustrophobic until they tried to shove me down this tiny tube. I completely freaked out. They put a towel over my face and tried again. I flipped out so bad I was clawing at my face trying to get the towel off and get out. I had only made it in up to my shoulders. I was in an utterly complete state of panic.

The next day, I called to schedule an open MRI. I told the receptionist that the CT had gone fine but the technician said I needed an open MRI or sedation for a closed MRI.

When the nurse called back, she said it was against this doctors policy to sedate just for an MRI. She said that beings I didn’t bother to show up for the CT and MRI it would be difficult to reschedule. I corrected her by telling her what had actually happened. Now, the tech had told me they have an open MRI but couldn’t use it without a request from the doctor. Now the nurse says I have to reschedule off site. Fine. I did that. The open MRI was much easier. They gave me headphones that piped in music and I could see the opening at the end of the tube. And the tech kept talking to me and reassuring me all the way thru it.

It was hard, but I did it. The nice people even gave me a disc with a copy of the MRI on it! I felt empowered now! I ended up in the ER with my infection. Took 3 rounds of antibiotics to knock it out.

July 5th, 2013
Day 11

I’ve been doing some research. I now know what multiple myeloma is and how it’s treated and what it’s outcome is. I even joined an online support group. The pain in the small of my back is now going all the way up my spine and in my neck. I can’t walk at all without the cane anymore. Some days it hurts so bad I can’t even get out of bed. I just lay there and cry because I can’t even turn over or move. I tell this to my doctor at today’s appointment. He tells me I have 2 tumors on the base of my spine. I asked him for a copy of all my test results. He scoffed at me and wrinkled his nose. He gave me a copy of the CBC (complete blood count). I never got to ask any of the questions I had spent so many hours and days researching and preparing.

Another open MRI of the neck is done. They gave me another disc. I adore the people at the MRI center. So nice. So compassionate. So very understanding.

Very frustrated! All summer I have been asking for someone to help me with the yard. Nobody. Four years I have asked for help with my kitchen floor. Nobody. I can’t do this on my own! I hate having to rely on others for help, but what’s more frustrating is hearing over and over again “I’ll be there for you…. I’ll be there to help…. Whatever you need, just say….” And nothing! I’m sick of promises as hollow as the air it takes to say them. My head is pounding, I’m sick, I feel like crap. I spent all my life putting everyone else’s needs above my own… Damn it! It’s my turn!

July 15th, 2013
Day 21

I once again bring up the pain. I ask for a copy of my test results. He asked if I even did the MRI because he doesn’t have anything. I show him both discs I have. He takes them to review them. I once again ask for test results. I ask for the discs back for my records. He gives me the incomplete results of a blood test and keeps the discs. He says my neck is fine. Once again, I bring up the pain. He says “if it bothers you that much we can look into radiation later down the line”. He tells me it’s imperative that I begin chemotherapy NOW. I bring up the osteoporosis and my impending doctors appointment with a specialist for it. He says not to bother that he will take care of me and do a better job of it. So I cancel the appointment. My second biggest regret to date. He tells me again how imperative it is that I start chemo right away to save my life. However, he won’t go any further until I have dentures.

My dad is very upset at my treatment so far and refers to the “doctor” as though it were a swear word. I feel hopeless. I’ve just been told “you are terminal. You will die. Go home and make the most of the time you have left”. Skipping ahead now…..

Sept. 18th, 2013
Day 86

I have stacks and stacks of papers, pamphlets, and books all about multiple myeloma. I’m a regular in the support group. I’m learning. I need a new doctor. I need a specialist.

So far, I’ve been humiliated, de-personalized, ignored and sent home to die. I wake up each day the same way I go to sleep, crying in pain. If this is how the rest of my life is going to be, I want to die right now. Even if it’s by my own hand. Even my prayers have changed.

Please God,
I beg you,
please let this have been my last day.
Amen.

The stress is enormous. My heart is even acting up now. Chest pain, hard to breathe. My back is intolerable. Even walking to and from the bathroom with my can is unbearable. I don’t know where to go or where to turn for help.

I have a cardiologist who is wonderful. I’ve been with him 4 years now. He’s patient, understanding, explains everything, asks a lot of questions and is a very important part of my life. Before the cancer, there was heart disease. I’ve had 6 heart attacks and 2 strokes. I have had multiple angioplasty and several stents implanted. This is the man who has kept me alive. We are doing another angio in 2 days. I trust him completely.

I saw a specialist for the multiple myeloma last week on Sept. 10th. I had to travel over 200 miles to get to him, pay for an overnight stay in a hotel, and my daughter had to leave her husband and kids behind to take me. Nothing really spectacular. A lot of talking. Some blood was drawn. He says I’m not full blown multiple myeloma like previously diagnosed. Instead, I am High Risk Smoldering (HRS). He says I have about 10-12 months before I am full blown multiple myeloma. He also tells me about a trial going on that I might want to participate in. This guy seems really nice but so did the other one. I got a real thrill out of seeing my daughter’s response to my home town of Dallas. I strolled with her down memory lane at each corner we turned. The efforts of a slightly misguided youth and energy makes for such entertaining stories when you are older. The things once considered “devastating” is so meaningless today. And of course, I leave out the bad parts…. The pain of abuse, the loneliness of despair. So many wrong choices made in desperation of approval and love.

Her eyes went wide when we reached the cancer center. Her jaw dropped as she marveled at the size and luxury of it all. She said, “MOM! It’s like a spa!” I told her, “this is the difference between a big city and a small town.” Oklahoma is no small town, but it is compared to Dallas. I told her that one day, I’ll take her to San Francisco or maybe Boston.

Oh, the doc gave me a week’s supply of pain meds (30 pills).

In the coming days, the pain is still there, and I’m still walking with a cane, but at least it’s manageable now. I can tolerate the rest. Thirty pills meant to last a week, lasts me 2 months. I hope he gives me more on my next visit.

October 15th, 2013
Day 113

I am in Dallas. I have been dreading this day. I have to sign the paper for the trial and have ALL the multiple myeloma tests done over again. All in 2 days. This trial, it represents hope to me. It’s a double blind study, so I don’t know if I’ll get the medicine or the placebo. But you know what? It doesn’t matter. If I get the med, and it works, then there’s hope of years ahead of me. If I get the med, and it doesn’t work, then I am no worse off than I am right now. If I get the med and it has horrible side affects, I can always stop. If I get the placebo, then well, it may not help me, but the information learned will help the future “me’s” that come behind me. The trial is hope. And I’m ready to quit before I even start because I am so terrified of another bone marrow biopsy. My trial coordinator reassures me it will be different. Day 1, the x-rays and blood work. We end the day with the biopsy. Doc gives me a Xanax to help calm me. Ok, it helped… He does the biopsy himself while a nurse is She is talking to me the whole time and reassuring me that all is good. He has to aspirate 3 times! OMG! Then it’s over. Ten minutes and it’s over. I actually walked out of the office afterwards with my cane of course… There was no bruising afterwards either. He says to me, “that’s the difference between a doctor and a specialist”. I have to do it again in 6 months. I slept all the rest of that day and all night. Now the MRI. Another Xanax. I like these…. I still panic really bad though. Even with the Xanax. I ended up having to take a pain killer on top of it to relax enough to do the MRI. It also helps that it has taken the edge off the pain of the biopsy and my back having to lay on that hard table for so long. They gave me headphones with music and a pair of mirrored glasses. With the glasses, I can’t even see the tube, just the opening at the end. I did it! I did a closed MRI! Tech said next time to have the doc give me 2 Xanax though…

October 31, 2013
Day 128

I received an e-mail from the coordinator today. I am now officially accepted into the trial. I will no longer count days.

I have good days and bad days. I have infections like you wouldn’t believe. I have ups and downs all the time. I’m strong. I’m determined. I’m going to live, not just exist or wait around. I have a vacation planned in May. Yes, May. I’m making future plans.

I found the good side to chemo!
1. No more bad hair days.
2. Never have to shave again.
3. Snow cones on demand!

If you have to suck on ice chips, why not add some flavor? And besides, the Am. Cancer Society gave me a really cute wig.

On the day my daughter was born, I knew she was sent to me straight from God himself. Now, 27 years later, she keeps me alive. She is my strength. She is the reason I am here. I love her so much. Not just because she’s my daughter, but because in her, I can see all the best of humanity. She takes me where I need to go; grocery store, medical appointments, even drives me to Dallas every month. She calls me every day and visits often. We even have a mother/daughter day once a week just me and her. No doctors. No errands. Just a day where I get to enjoy her company. She’s so beautiful and so smart. I am so proud of her.

My entire life, I have sought out acceptance, approval, love… It has always eluded me. I never could believe that anyone would ever love me or care about me at all. My ex-father-in-law (who I call Dad) is one I’ve always tried to get approval from since I met him. I admire him so much. I watched as he hugged my best friend when she bought her house and told her he was proud of her with envy. I watched as he spent time with my daughter and had so much fun with such sadness in my own heart. The man I was with even convinced me that he only was nice to me so he could be around my daughter. His grand-daughter. It was so easy for me to believe. In the past few months, he’s been so nice to me and supportive. He helps to offset the cost of the Dallas trips. His words of encouragement has kept me going when I felt weak. Maybe he really does care and just isn’t very good at showing it? Maybe I’m not very good at recognizing it.

There are others around me, my niece who is a Godsend. A dear friend who I turn to and understand about pain and illness. My best friend who visits me and brings me books that are uplifting and gives me backrubs. So many around me who help me when I need it. So many who act as though I’m already dead. It’s hard when you feel invisible sometimes. But I guess it’s just another part I have to adjust to.

I don’t baby-sit my grandchildren anymore. I have helped to raise my grand-son (age 5) and grand-daughter (age 3) since the day they were born. But I can’t handle it anymore. I don’t have the strength. And I keep getting sick from them. Especially with my grand-son in school now. He brings everything home with him.

I’m tired all the time. I keep getting these infections. My back hurts all the time. My legs hurt now too. I don’t eat much. I sleep even less. I don’t know where I’m going from here. I do know it will be forwards. But even if I do backslide a step or two, that’s just an opportunity to more forwards an extra step or two again.

November 19th.

I have made a decision. Every day I wake up is a good day. Pain, sickness, heartache, memories... I can deal. As long as I'm still alive, I can deal with all the rest. So that's what I'm going to do. I'm going to live. And I don't mean just exist each day. I mean live! I'm going to love and laugh and find the joy in even the tiniest of things around me. And on the bad days, I'm going to remind myself of why I'm doing this. I want so much... I want more time with my daughter and grandchildren. I want to continue to make my quilts. I want to have family and friends over for a cookout. I want to see beauty in the world and hear laughter all around me. And nobody, no illness, no person, nothing is going to stop me.

[Obayan]

Re: This is me.

by Obayan on Tue Nov 19, 2013 4:00 pm

November 6th, 2013

My first treatment. Everything and everyone was so rushed it was like a whirlwind of activity. I got up to the treatment station and they inserted the IV in the most painful spot… the inside of my elbow (not where it bends but against the ribs). The IV site was sore for several days afterwards. They drew blood before the treatment and afterwards too. I feel like a human pincushion. Everything went well though. I was terrified and nervous, but it was ok. The lady was extremely nice and talked me all the way thru it and kept an eye on me the whole time. My angel even came up to visit me and sit with me for a while too. It helped so much. I wish we didn’t have to bring one of the grandbabies with us when we go. Only because it kept my daughter from being by my side.

November 7th, 2013

When I went to bed last night, there was a tightness in my chest. An all too familiar feeling with heart disease. Usually it goes away with rest. I woke up this morning to a headache from hell. This isn’t a stranger either. By the afternoon, I was getting concerned. It wasn’t easing up. Time for an ER visit. I called my son-in-law to take me to the doctor. The pain was bad. My head hurt, my chest hurt, my back hurt. By the time we made it to the ER (a half hour later), I couldn’t speak. Well, I could talk. I knew what I wanted to say. But nobody was understanding me. There was extreme weakness in my left side. I couldn’t walk even with the cane. My leg just wouldn’t do what I told it to. The left side of my face was sagging and I couldn’t use my left hand very well. I was having a stroke. It’s called a TIA. It’s a mini-stroke. It’s a warning. Something has to change. They said it was just coincidence that it happened the day after my first treatment and had nothing to do with it. It’s from a condition I’ve had for a while called Intracranial Atherosclerosis. Hardening of the arteries in my brain. Their recommendation is to see a neurologist and when I take the long drives to Dallas, stop more often and get out to walk. They also put me back on a previous medicine I had been on a while back.

[Concerned]

Re: This is me.

by Concerned on Thu Nov 21, 2013 7:31 pm

Hi Sharon,
I can NOT imagine all the pain you have been through in your life. I've read both of your postings and am amazed at your will power. Please make it a point not to let doctors and or others run your life.

Ask your doctor to give you the cd's back - they were yours, etc. etc. Next time insist on being sedated during a bone marrow biopsy. Big, grown man that I know of insist on it, why put up with the inefficiency of some personnel and or doctor when it comes to avoiding pain .

Regarding pain medication, INSIST that you are properly medicated at this time - there is no reason in the world that you should have pain when it can be avoided. BTW there are no limitations on prescriptions for pain meds for cancer patients.

[Obayan]

Re: This is me.

by Obayan on Fri Nov 22, 2013 2:38 am

Over 200 views and yours was the only response. Thank you! I didn't know that about the pain meds. I have been trying to ration them out and taking them only when I couldn't bear the pain anymore. Will be leaning more towards ending the pain at onset from now on.

[Lillyput189]

Re: This is me.

by Lillyput189 on Fri Nov 22, 2013 9:31 am

All I can say is wow. I've watched my brother go thru the same hell as you & I pray for you. I hate this disease. May God bless you.

[Concerned]

Re: This is me.

by Concerned on Fri Nov 22, 2013 1:51 pm

Hi Sharon,

Yes, sometime this year there was a big report on TV about pain meds and how overused they are etc. etc. and it stated what I wrote earlier that cancer patients are excluded from the "rationing" of pain meds.

Here is some more detailed information about pain, pain meds and cancer.

http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/pain/paindiary/pain-control-toc

[Obayan]

Re: This is me.

by Obayan on Fri Nov 22, 2013 3:26 pm

Today is a rough day. Why is it so easy for those around me to blow me off? It hurts that I'm not that significant.

[Concerned]

Re: This is me.

by Concerned on Sat Nov 23, 2013 4:39 pm

Hi Sharon,
Maybe you need to change your expectations of those "around you". I don't think that they think you are insignificant, maybe they just don't know how to respond.

It was the same for me. Reading your lengthy introductory post I didn't know if and mostly how I should respond. So it doesn't mean that the 200 plus people reading your post don't want to respond - but some of them (like me at first reaction) don't know how to respond. I am sure each one felt in their own way for you.

[Waldopepper]

Re: This is me.

by Waldopepper on Sat Nov 23, 2013 7:18 pm

Hello Sharon,

A diagnosis of multiple myeloma is a real shock and takes time to accept and adjust to. Myself I'm still working on that part. Your decision to go with a clinical trial is a big first step. Once you trust your care providers and treatment you may find some peace of mind and less anxiety. Let your daughter do all she can for you and don't feel guilty. Don't skimp on the pain meds when you need them either.
This site has helped me a great deal. Not only the med advice, but the stories of others, like you , dealing with Myeloma day by day. Read the whole site, even the old stuff. Good info and also shows how far advances in treatment have come...
Best of luck to you and all of us !!

[LadyLib]

Re: This is me.

by LadyLib on Sun Nov 24, 2013 2:46 am

Do not be discouraged.

The disease is manageable. You just need to connect to the right care. Please look for a cancer center that specializes in multiple myeloma to guide you through this process. You can do it! God did not bring you this far to leave you. You made it through so much, and you are still here. Let's keep fighting!