Tuesday

Time to Get Personal About Health - A new perspective in the Oncologist Office


I feel like Family Volley has been void of most things personal for the last few months. Little emotion, lots of textbook.

I know that's probably not why you read Family Volley, but you are always so willing to put your heart out there. I should do the same.
So, we had an experience a few months ago that made a big impact on our family.

Enough time has passed to share.

In November, at a doctor's appointment I had my blood taken. The quick results came back with a problem. Anemia. Anemia is a lack of iron. Iron helps your body take in oxygen. You need oxygen to function. So the doctor sent me to an Oncologist. Oncologists are scary.

After complete blood work, the diagnosis was not good. Not only was I anemic, but my iron levels were so low that they barely registered in my cells. On top of that, my blood cells had shrunk considerably. This was really bad. The doctor looked at me and asked how I even had the strength to walk in the office. The Oncologist immediately started me on a six week treatment plan. Iron infusions every week for 6 weeks.

I received my first infusion on that very day. They took me into a large room with reclining chairs every 5 feet or so and ran a needle carefully into my arm. At the other end, dark brown liquid. I sat as a nurse forced the liquid into my veins. You have to be really careful with iron, one wrong move on the nurses part and the iron would die my arm indefinitely. The needle had to be placed just right and the iron administered very slowly, or else my vein would break and my arm would go black. The nurse told me that administering iron was her least favorite thing to do. That was nice of her to say. All of a sudden I was really worried about her "needle skills". Had she been trained at a credible nursing institute, opposed to one of the online nursing programs or technical colleges that I had seen on T.V?

I can handle needles just fine. I left thinking, "Okay, I can do this 5 more times".

The doctor had told me that there could be side effects, but that very few people experienced them. They could range from headaches to cardiac arrest. Big range.

About 8 hours later I felt very different. 

Throughout the day my body had very slowly become paralyzed. It started in my neck and then my back, next through my legs and arms. I didn't think much of it until I realized it was taking over completely. I don't mean like the flu makes you achy and miserable. I mean I had no use of my body for the next 24 hours. Completely unable to walk, turn over, struggled to breath, paralyzed. On top of that, every joint and muscle in my body ached with pain that can't even be described. I couldn't take care of myself, my family or even wrap my arms around our kids to say goodnight. I couldn't even move my toes.

My husband called the doctor who told us it was rare, but totally normal. After the phone call he carried me to bed and sat up all night making sure I was okay. The breathing worried him the most. I laid in bed that night and the only thing that worked were my eyes, filled with tears.

24 hours later I could walk, but my arms and legs were still very weak. After 72 hours the iron had worked into my system and things were back to normal. 

Just when I started feeling good, I had to go in for my next infusion. 

We repeated this same process every week through the beginning of February. We had to schedule our lives around the treatment. We knew how long I had before complete paralysis set in, and how long I would be out of commission. The doctor let me take a break the week of Christmas and New Years. That was really nice of him. 

The experience itself was very humbling. Hence the reason it has taken so long to write about it. Anemia was nothing compared to what the rest of the people in that office were going through. Nothing.

Each week I would check in and sit in the waiting room. My appointments were always at the same time so I was always surrounded by the same people. I would sit waiting for them to call my name. I could see in to the room with the reclining chairs. I took a picture one week. I wanted to post it here. The view was too sacred, it would not be appropriate. Men and women with and without hair sat in the same chairs watching the same shows. They were of all ages. Cancer doesn't discriminate. 

One week I was having a very difficult time. The iron had been administered too fast and I had fainted. A kind older lady, receiving chemo, gave me a small smile, and asked if this was my "first time". She thought I was battling cancer. There was compassion in her eyes.

One women came every week with a family member. She would set up a table in the waiting room with a puzzle. Patients and family members gathered around the table to help place the puzzle pieces. They talked about their illness a little. They talked about other things, a lot. Mostly they talked about their families.

The nurses and doctors knew every one of us. They remembered our names and our families. Being a nurse in an oncology unit requires a very special person. They anticipate needs before they arrive and do all they can to make you comfortable. They are instant friends. They are wonderful women and men.

I cried every week. Out of gratitude and humility, and pain. I cried as a waited for my turn and then I cried as I laid in bed every night unable to move any part of my body. I thought about my family and the families of the people I saw each week. I knew that what I was experiencing was nothing compared to their physical pain and mental anguish. These were strong people with strong families.

What a petty challenge I was dealing with, in comparison to what they were going through.

I recognize this experience was nothing compared to the suffering that many families and individuals were dealing with in that office, and are dealing with, all over the world. I am not comparing in any way.

I am grateful for the experience. It brought a new perspective. It helped me refocus on what was most important. My family. Everyday. The little moments, the little things. 

There has been a different feeling in our house since then. More patience, more love, more time together, less complaining.

It has been easier, on the days that are long and hard, to keep my perspective. Being a mother is not easy.  No one said it would be easy. But I know that the greatest happiness I have and will ever experience comes through doing my best to be a good wife and mother. I know that. 

I am grateful for each day the Lord gives me to fulfill this sacred role.

21 comments:

  1. What a story! So glad you're Ok, what a scary experience to be totally paralyzed. A fresh perspective is always a good thing, isn't it? Thanks for sharing your experience and insight.

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  2. I can't even imagine what you went through. That is terrifying. Do they know what caused you to become so anemic, and if there is a way to prevent it? Will you take iron pills in the future?

    I was severely anemic with my third pregnancy and I was so relieved to have a diagnosis because I could hardly move. Walking up stairs was almost an impossibility but once I started taking iron it helped a ton. I hope you're feeling better and never have to go through this again. Thanks for sharing your experience with us--so personal, so sacred. I'm so glad it ended well for you.

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  3. Thank you for sharing. Please keep us updated, and I hope things get better from here.

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  4. Wow! So sorry. Thanks for sharing. I need to be thankful for the little things and be the best mother I can be now. Thank you for the reminder.
    I really hope you are feeling much better. So scary.

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  5. Wow, that must have been terrifying! I just lost my mom to cancer, and while I took so many pictures of us and her during illness, but they are sacred, so I get what you are saying.

    Thank you for sharing, it helps put things in perspective and a gentle reminder to enjoy these little moments.

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  6. You never realize how important your health is until you lose it. What a scary thing to go through. Thanks for sharing. I have fibromyalgia and so each day can be painful but I am always thankful for the good days.

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  7. Thank you for sharing. I hope you are feeling well now!

    On a personal note, your experience reminds me a lot of my own experience with cancer last year. I have an excellent prognosis and watching others fight on a different level was humbling and brought me a new appreciation for what I have. You put a lot of my same thoughts into very eloquent words.

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  8. oh my goodness, what a scary experience. you are so brave! i can't imagine paralysis settling in and just waiting for it. you deserve a big prize. :)

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  9. What a beautiful post. Thanks for sharing. I hope you are doing better. It's a nice to get a good kick in the pants every now and then thinking about how so many others have such difficult trials. It really puts life and the joy of true living in perspective.

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  10. Wow, wow, wow. I had no idea iron infusions could do that to you. I hope you're feeling much, much better. Thanks for sharing!

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  11. Wonderful post. Thank you so much for sharing.

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  12. Heather, I am humbled by and grateful for you and this site. I have not been cherishing my motherhood role as I ought, and this was the kick in the mommy pants I needed. Thank you for being willing to share this with strangers. It means a lot.

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  13. I was so bummed to find out I wasn't getting your feed for some reason. I got it up until three posts ago. I come back and see this. I am so sorry for this trial you have had to deal with. My Anemia never got to this level. I am glad that you are feeling better, and that you have such a wonderful husband that you can rely on.

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  14. What a scary thing to deal with. So glad you're feeling better though.

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  15. Wow, you are an amazing person. I'm glad you are feeling better. Every day truly is a gift isn't it! Nice to meet you from the UBP!

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  16. Heather,
    Thank you for sharing your experience with us! It is both scary and exciting at times at how quickly our lives can change. I hope that you are healthy now, and that your experience will be a positive thing for you in the future!

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  17. Wow Heather! I just read this....I am SO sorry to read that you were going through something so difficult. I'm sure it had a way of really making your realize how precious life is. Thank you for sharing. I can't imagine working in Oncology. You are right, it takes a VERY special person to do that. I pray that you are healthy now and everything is on the mend! :)

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  18. Oh my dear! You are a brave woman. My husband went through cancer treatment and has since been declared cured. What you went through is nothing less than what some cancer treatments are like too. It's the trauma and the life lesson to hold closer those that we love, which is most important. Thank you for sharing this!

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  19. Dear Heather,
    I happened to stumble upon your writing while doing more research on iron iv's. I am currently doing my second round of iv's - the first one was several years ago. Yesterday was actually my second dose and I am doing them every two weeks, double dosage. I can't believe how severe your side effects were! I am so sorry to hear that it can affect you like that - I never even knew!
    I really just want to tell you how touched I was when I read how you described the treatment room and the company we are surrounded in during our procedures. You wrote in words how I feel every time I go - not how unfortunate I am or how inconvenient the procedure is - but rather how blessed I am. I lay there saying prayers for each person around me and sending smiles with every eye contact I make.
    It's truly amazing how we can be touched at times when we are our weakest, and in turn, grow stronger.
    I wish you continued health and happiness and if you ever would like to talk about this in the future, I would be more than happy to have someone to share these emotions with.
    Thanks again for sharing your experience and feelings.
    ~Angie

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  20. I have that. Actually I am low on iron again. I can feel it- but I do not want to go back in for the blood tests to confirm cause the drs always freak. No more shots- no more stupid tests and living in paranoia of haemorrhages ect. My side effects were not that bad but they still sucked...although my doctor did not tell me about cardiac arrest! And i had so many of those!!! You know my white cells were not even up- but after so many tests ( even bowel gross tests) they did not find anything wrong that was causing m iron levels and cells to be in the negative. Finally I went to a naturopath and she helped get my cell count up and the doctors loved my results. She said some bodies are just like that and will have to eat better, take certain vitamins to help with absorbency, and have to take the liquid on and off for life ( eating liver also helps.)
    Anyway, I hope you are fine now.
    Love this blog.

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