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Iron Deficiency Anemia & The Adamantium Cure: Part III

Iron Deficiency Anemia & The Adamantium Cure: Part III

 

 

We were stuck in a holding pattern until my insurance company approved the iron iv infusion. At least a week of phone calls and tenacity on my part finally got the approval. It was so very frustrating as it seemed as if I they weren’t understanding just how important the treatment was to me. My first iron infusion therapy appointment on November 28, 2012 was nerve wracking for me, as it is administered in the same infusion suite where chemo is delivered it was a quick reminder just how fortunate I was to be here with a plan. The infusion has to be done where they are prepared for any allergic reactions and can act quickly to address adverse side effects, the surroundings remind you that this is not something to be taken lightly. I was searching within and without to find a way to calm myself, to focus, to visualize healing taken place – and then it happened. As the nurse approached me with the rather large syringe containing black liquid (my iron) I immediately saw her coming at me with Adamantium- I knew as soon as I started getting that force into my system I would be strong again and be ready to take on the world! Okay, so there was a slight moment of panic when I proved to be a bit allergic to Adamantium and started itching all over my body. I did get to see just how quickly the doctors, nurses and aides could get a crash cart over and start injecting benadryl into my IV. Once that passed I went back to my visualization, made even stronger by a dose of benadryl.

 

Adamantium - The Heroic Table of Elements

Adamantium – The Heroic Table of Elements

In case you are not familiar with Adamantium, in the Marvel Comics universe it is an indestructible metal alloy best known for being the substance bonded to Wolverine’s skeleton and bone claws. I saw the iron flowing into my body, bonding to my blood cells and bringing me strength. I saw myself running again, being active, being strong.  Those images helped me hold on and get through the process. I left feeling pretty lousy, beat up and achy,  happy to be able to make it home before I started vomiting. We had to call the doctor so he could prescribe anti nausea meds, with that I was finally able to sleep a bit. The next day I felt horrible, but kept revisiting my visualization and using the power of positive thinking sure that each day I would feel better. I knew I had one more treatment to get through and I had to believe that this would be the answer for me. Any other outcome was unacceptable.

 

My visualization.

My visualization

 

Those unfamiliar with the importance and healing power of visualization in healing, and with that visualization having a personal power for the patient, tried to tell me that what I really should be thinking about was Iron Man  - as the infusion was in fact iron. For me there is only one superhero who could save me – for me that syringe was Adamantium. I had my second of two infusions on December 6, 2012. I always find myself more apprehensive when I know what pain awaits me, when I have a clear idea of just how uncomfortable the getting to the other side of this thing would be.  One benefit was that after my last experience I first received benadryl through the iv prior to the infusion – no itching, no creepy crawlies! Also, although I was exhausted and a bit nauseous afterward I did not throw up and was able to sleep it off most of the afternoon.

The next step was the waiting, and as Tom Petty sings, it truly is the hardest part. I would now wait six months and have my blood work repeated to see if this was my cure, my own personal Adamantium. If the levels made it up into normal range, I would then have the test repeated in another six months to check levels again.  How often I need to have the iv iron infusion therapy will be totally dependent on how my body absorbs, stores and utilizes the iron injected into my body. Potentially the treatments could only be once a year – I won’t know until time passes. What I do know is that this will be a forever thing, considering all of the horrible things I narrowly avoided, this was totally acceptable.

In the mean time I had a very important goal that my recovery process was based on. Whenever I felt weak, I kept reminding myself that by December 10th my strength would return enough for me to make a very important date. Tenacious, determined, focused and unrelenting are qualities I have relied on to get me through even the most difficult of times. When I set my mind to accomplish something very little gets in the way of me and my goal. Even more so when I had a date to thank the person who in a unique way was part of my healing.

Hugh Jackman & me, Les Miserables PremierDecember 10, 2012 NYC

Hugh Jackman & me, Les Miserables Premier
December 10, 2012 NYC

Update:  On May 10, 2013 I had blood work done that showed all of my results falling into the normal range. I pride myself on never being defined as “normal”, but in this case it was wonderful news. As long as I remain symptom free, my next blood work will be in November of 2013 – hopefully I won’t need my next infusion of my super hero cure for quite awhile!

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Iron Deficiency Anemia & The Adamantium Cure: Part II

Iron Deficiency Anemia & The Adamantium Cure: Part II

When you enter an emergency room you know how serious you are by how quickly you are taken care of, apparently I was in a pretty serious place. I was immediately given a baby aspirin – I will never forget the look of disbelief when I told her why I had refused one. Heart attack beats irritation to the stomach lining hands down – I now carry a bottle of baby aspirin everywhere I go! A further look of disbelief occurred when I was asked approximately what time the pain started and I answered 1:43 PM.  As my receipt for the candles was marked 1:45 I thought that was as accurate as you could get. They were somewhat in awe of my lack of accepting the reality of what was happening here. They also were not impressed when I told them the only thing I had taken was a TUMS. I think the one thing they were impressed by was my seemingly delusional behavior, if you know me well you know the worse things are, the calmer I seem.  I was as cool as a cucumber, except for the moments when my chest felt like it was getting stepped on by a giant and alternately when my head felt as if it were being squeezed in a vise.  As the ER team did an amazing job of mobilizing, I looked at Anthony and the moment I saw his face it hit me just how bad this might be. All of the things I had been in denial about hit me with brute force, after all I had done to get to where I was in life how could it all be taken away??

Northern Westchester Hospital

Northern Westchester Hospital
Mount Kisco, New York

A doctor returned with news, bizarre news. So far my cardiogram looked okay, but I would wear a telemetry monitor and have blood enzymes drawn throughout the night to see if that showed a cardiac incident. The bigger issue; however, was that I was severely anemic, so anemic that I needed an immediate transfusion.  In my continuing effort to act as if this wasn’t really a big deal I very helpfully told them I knew my blood type was A+, they assured me that they would handle the typing & matching in the lab.  My body was not producing enough red blood cells, and the ones it was producing were small (microcytic anemia). This severe lack of iron rich blood limited the oxygen traveling around in my body which in turn limited the oxygen sent to my heart. Prime reason for a heart attack – lack of oxygen sent to the heart. So apparently I had a seemingly non heart attack heart attack – all the symptoms and pain caused by an undiagnosed case of severe iron deficiency anemia. As the doctors explained what steps would be followed to figure out how this happened and how to prevent it from happening again this is what it sounded like to me:  ”blah blah blah bone marrow biopsy blah blah bone marrow biopsy”. Could I have cancer?  Believe me at that moment I was having no problem facing the reality of the situation, and it wasn’t good. The following morning I passed a stress test with flying colors, but there was still no explanation for the anemia.  The doctor did add that I was also low on B12, so while we were figuring out exactly what was going on I also was told to add 3000 mcg of B12 sublingually (love that word). After a lengthy chat with a doctor filled with lots of what ifs I was discharged that evening with quite a date card full of upcoming appointments – and a lot of trepidation.

Iron deficiency anemia occurs when your body doesn't have enough iron.

Iron deficiency anemia occurs when your body doesn’t have enough iron.

The following weeks consisted of me laying down and going to medical appointments. In hindsight I had every one of the symptoms of severe iron deficiency anemia – most notably an unbelievable urge to chew ice – constantly, by the tray, by the glass, at all times. We knew it seemed weird, but didn’t think it signaled something that could be potentially life threatening. I am one oscopy shy of having had every oscopy one could have (never fear, the final one is happening soon). No bleeding, no explanation for the  severe iron deficiency – and no feeling any better. As a final act of avoidance – primarily of the bone marrow biopsy – I asked to see the hematologist first. At this appointment he explained to me that for various reasons a person’s body can stop absorbing iron and that is what he thought was happening to me. Despite a very healthy diet high in protein (60 grams plus per day) and iron supplements  (60 mg per day) my body was not taking the iron in.  My body had stopped absorbing iron, and when this happens the only way you can get iron is via iron infusion therapy. After having the iron infusion therapy, you then regularly check your blood to make sure you are not running on low. Ideally this is done every six months to a year depending on how your body stores the iron it receives, and from here on in this is how your body will receive iron. Well at least now we had a plan.

According to the World Health Organization, iron deficiency anemia is one of the most common nutrient deficiencies in the world. It can be caused by a low dietary intake of iron, poor iron absorption, or excessive blood loss. Signs of anemia include: constantly feeling weak and tired; short attention span; irritability; decreased performance at work or school; delayed cognitive development in infants and young children; decreased immune function leading to increased illness; swollen and red tongue (glossitis), and difficulty maintaining body temperature. Several groups are at an increased risk for iron deficiency including children and adolescents, pregnant women, women of child-bearing age, athletes, and older adults.   Iron: An Essential Nutrient by J. Anderson and C. Fitzgerald(6/2010), Colorado State University

 

Part III – The Adamantium Cure or how I found a way to think positively about someone coming at me with a large syringe filled with dark liquid. 

 

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Iron Deficiency Anemia & The Adamantium Cure: Part I

Iron Deficiency Anemia & The Adamantium Cure: Part I

If you asked me on October 11, 2012 how I felt, I would have probably told you I was at the top of my game. Family was great, new job was opening all of the creative doors it had promised, I was working out regularly and I was happy. Perhaps I was more tired than usual, had a little insomnia, complained of a sore mouth/tongue at times, popped a bit more Extra Strength Tylenol these days, and my forgetfulness was becoming a running joke – but other than that, fantastic! Good friends were appearing in concert nearby and it was a great opportunity for a little road trip with my dear friend and travel buddy Joan – an overnight of good food and drink, music, and hotel sleep.

October 12, 2012 - the picture of health!

Christian Hoff & me – October 11, 2012      The picture of health!

It was a much needed getaway – dinner was lovely, The Midtown Men were amazing, and a long night’s sleep seemed to be exactly what I needed. We started out the next day in high spirits for a little time in NYC before heading home and that is where my excitement unfolded. I was standing in a place of complete happiness when it began  - in Tribeca, holding a Laughing Man latte,  picking up Sandalwood Vanille Acquiesse candles at Stella. For me this is a personal trifecta! It started as a weird pain in right in the center of my chest at the base of my breast bone, a feeling that everything was tightening and wouldn’t release. If you’ve ever had spasm or cramping in your leg or toe – it was like that. It wasn’t heartburn, it wasn’t in my stomach, it was something I had never felt before. I kept telling myself just to breathe through it and it would pass.  Focus on the candles, focus on the candles……

Next, when the spasm would begin it started to travel up my neck into my lower jaw. A very distinct and specific path that was so excruciating it hurt my bottom molars. That’s when I heard the voice that I knew to take seriously – it was Oprah. Specifically Oprah discussing the very unique symptoms women have when experiencing a heart attack. I just kept hearing her repeat “radiating to the jaw”, and thinking this is not happening to me.  If you ever have heard stories of people in the throes of a medical emergency doing ridiculous things you probably, like me, thought “what an idiot, who could possibly be that stupid?” – I was and I know now why it is done. Denial. Denial that this could possibly be happening to you, denial that it could possibly be that serious, denial that you may die. Stupid is one of my least favorite words (along with hate and boring), but in this case the only words that could possibly describe my actions are utter stupidity.

I continued buying my candles, the more normal I acted the more normal things will be. I mentioned in passing to Joan, who is in the medical field, that I had a weird pain. I refused aspirin because, due to a previous surgery, cannot take NSAIDS – but did accept a TUMS. Joan suggested going to an ER – I insisted it would pass, dropped her at her train, and drove home via the West Side Highway to The Saw Mill to The Taconic. Called my doctor somewhere around Pleasantville to ask if I should check this out, was told to go to the ER. Drove home and mentioned calmly to my husband that I wasn’t feeling great and was going to the hospital – taking myself. He looked at me incredulously and drove me to the hospital. I believe the whole way I was explaining to him how this really wouldn’t be a big deal.

That last paragraph is humiliating to write, and embarrassment is the reason I haven’t written about this until now. In hindsight I cannot believe I did all of those things that were so irresponsible, and unsafe for me and for others. Denial can make an educated, common sense laden, pro active person a lunatic. The only thing I can say in hindsight is that I was so afraid I was dying I just wanted to make it not be happening.

 

Part II:  When you enter an emergency room you know how serious you are by how quickly you are taken care of, apparently I was in a pretty serious place.

 

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