Surgeon and the spleen

While I was in MDA in July 2016, before I had the enlarged spleen removed, the surgeon came to my room and spoke to me.  She said that because my albumin level was so low (nutritional), that I was at risk, as well as the fact that my splenetic artery could accidentally get cut and I would bleed to death on the table.  Nutritional level must be high in order to heal properly.  If you don't eat, your body won't heal like it should. Common fact. So basically, she wasn't going to do it.  I was devastated. I called my husband on the phone and told him what she'd said, and he in turn called Dr. V. (my husband has saved my life so many times by talking to my doctor for me, and that's just in ONE way).  Dr. V. went to the surgeon and took her by the arms and said, " YOU HAVE TO DO THIS FOR HER! YOU HAVE TO REMOVE THE SPLEEN!"  (this is what was relayed to me, whether it was word for word....).  The surgeon returned to me the same day and said, "I'll send you home and schedule you for 3 weeks from now to remove the spleen, if you can bring your albumin level up.  You need to eat."

My husband called our eldest granddaughter to come to Houston, from Louisiana, to help cook and take care of me, and for moral support. (smile)  My mom had been staying with us since 2009 to help out, but when our granddaughter came, it was an added blessing.  I craved her homemade caesar salad dressing with croutons, so had her make that for me few times a day, and frozen pomegranate Ensure crushed to make a slush, and also craved beef barley soup!  My niece even ordered me a case of it off of Amazon!

During the time of returning from MDA to wait those three weeks, I had about five fans going on me all the time.  I was basically bedridden because I was in so much pain when I walked.  I didn't want phone calls, or watch TV, or have visitors.  All I wanted to do was think, and pray.  I was either going to live, or die on that operating table, and all three of our children were pregnant at the same time, and I truly wanted to see those babies.  I even told the surgeon, "I've got three babies waiting to be born, and I want to see them!"  She's like, "Nothing like pressure." (smile)

I had to go back to MDA for blood work, and other tests, before surgery.  Talk about difficult, when you're so ill, so weak, so much pain, and you're toted around in a wheel chair, and have to sit in all these waiting rooms prior to each test.  My dear husband.  What a trooper he's been. He would get stressed out when he was worried about me at times, but he was always there for me, driving me here and there for tests,...We'd spend all day when we'd go to MDA. 
There's a saying about MDA; that when you go, expect to spend the day, something like the initials stand for "Most of the day".  Anyways, there you are. 

After blood work, the results are generally ready about 1-1/2 hours later.  The PA or the doctor, depending on who you're scheduled to see that day, will then call you into the office and give you your results.  This day I was eager to get my albumin level results, because it determined whether or not I'd have the surgery to remove the spleen.  I was desperately ready to have that huge thing out of me!  The assigned doctor for me that day told me my results were still too low.  I'm thinking originally the levels were 2.5 and it needed to be 4.5 or above.  I could go back and be accurate, but this is about right.  We were not happy.  When we left the office, my husband wheeled me down to the cafeteria on the first floor. Needless to say, I was crying, so disappointed. So scared.  I wanted to live!  WELL!! My cell phone rings, and it was that same doctor!  He was apologizing all over the place: he'd read my report wrong!  My albumin level was high enough to have the surgery, which in itself was a miracle because all I'd been eating was frozen Ensure slushes, beef barley soup, and caesar salads! Now tell me; would that be enough to raise my nutritional level??  We praised God because we knew it was a miracle.  Absolutely!

As I've likely already said in a previous post, I was receiving so many cards in the mail with scriptures and encouragement and prayers.  So I took hold of the scriptures that meant the most to me and trusted God, that no matter what happened, I would be alright.  Go to heaven, or stay to see our new babies.

The surgeon also informed me that my recovery was going to be a marathon; going to take a long time to get over.  The surgery was estimated to take four hours, however, she showed up in the waiting room after only two, which my family thought meant bad news.  "No, she did great and the splenetic artery was right there in plain view on top, so there was no chance of accidentally severing it."  WOW!!!  Another answered prayer! 

My granddaughter, bless her heart, had the job of staying with me when I was in a room for next few days recovering.  I tell you what, it was some painful after the twenty-four hour pain shots wore off!  But when I awoke in the recovery room, of course, you want to continue to sleep but they have to wake you up from the anesthesia, safety first, I was surprised.  I was prepared to not live.  I really was.  I wanted to live, but I knew I was high risk. I was certainly thankful to be alive!!

Our granddaughter says I was hard on her when she stayed in the hospital with me; I didn't want to get up to walk twice a day, I was hurting all the time.  The pain meds barely worked, although they gave me what I needed.  She's able to laugh about it now, but anytime I'd be difficult, she'd get on the phone and call her mom or her Papaw and let them know.  Phew, glad that's over with.

Not having any meat on my bones caused extra pain, had to lie on pillows for months whenever we had to travel in a vehicle. I remember when I saw the nutritionist, she said, "I see you've lost even more weight after surgery, but you need to gain."  I told her, "They just removed an eight pound spleen, so yeah, I lost weight."  "Oh" as she begins to write on her little tablet. (smile)  I even had to SLEEP on pillows in the bed, or on the couch; didn't matter how I lay, it always hurt.  I'm still having back problems, but no longer have to lie on pillows. Still having back pain when I do too much, or sit too long, etc.  Need healing for that too, as do so many people I know.

Of COURSE I was scared at times. Often. I'd get my Bible out and search for scriptures that encouraged me, I'd pray. There was a great support system around me, family and friends that came to visit me before surgery, even from other states.  I was showered in love from all around. I've been so blessed.  But bottom line, I knew the only one that could help me during this time was the Lord.  It was me and Him.  This is what I've learned throughout my life, is that when it comes right down to it, I have to turn to Jesus and His Word for any answers, and the Holy Spirit comforts me and teaches me whatever I need to know at any given time, just like the Bible says. And I'm TELLLING you; it's TRUE.  He has ALWAYS been there for me, always.  I may not get a quick answer to some prayers, and some I've been waiting YEARS for...but I know without a shadow of a doubt He hears me. US.  He hears US. 

When you spend time with someone, you get to know them, right?  Same with the Lord.  When you love someone, you want to be with them, get to know them, stay with them, share with them.  Prayer is simply talking to the one you love, pouring out your heart. "The effectual fervent prayer of a righteous man availeth much." James 5:16 KJV 

Learning to hear God, is the same as spending time with Him.  You learn to recognize His voice, guiding you,....But it will happen.  Whenever I'd pour out my heart and say, "please let me know you're hearing me" He always did, still does.  It was obvious, like something would happen to show me He heard me.  Would love to give an example, but not coming to me right now...But I'll let you know when I remember an example. (smile)

I have so much I want to share, to encourage you in your own walk in this life.  About so many things.  *sigh* One post at a time.

Oh, and we have three new grandchildren: two boys, and one girl!  Awesome!! These make us having eleven grandchildren now, and what blessings.

And again...

After the spleen was removed, MDA Dr. V put me on Jakafi twice a day.  This takes care of most of the symptoms of Myelofibrosis, as well as helping to prevent the liver to become enlarged like the spleen was.  Jakafi was just put on FDA approval so by the time of my surgery, I qualified per protocol to be put on it.  Not everyone can take it nor are some able to remain on it for long.  Everyone is different.  It will either eventually not work for me anymore, or it will help the bone marrow to continue to make blood.  I have to follow up with Mary Bird Cancer Center here in Houma.  So every few months, my blood work is done by my Dr. K there, and check ups.   I don't have to go to MDA but once a year now.  What a relief!  My main pain is usually caused from nerve damage to my back...from what they're not sure. Again, they still haven't found a cure for Myelofibrosis, but the LORD is not limited and nothing is too difficult for Him!.

What's more...

 

 

We were able to return to our hometown in south Louisiana end of 2016.  My husband accepted retirement in mid '16, and I'd had to take immediate resignation from working the same week I was diagnosed.  We love being back home; we've done more visiting friends and relatives since being here than we'd done in the twelve years we'd lived in the Houston area.  We believe it was definitely a good move to be in Houston because of the medical treatment I was able to receive by living so close to MDAnderson Cancer Center.  Many people from around the world do travel there for medical reasons, but we were fortunate to be within an hour's drive.

After the eight pound spleen was removed in August 2016, I'd lost so much weight, basically anorexic for a good while.  The spleen pushed against my stomach causing a "full" sensation.  Lost weight fast, but I've now put more on than I need over this time.  We're going to buy a second hand bike today, can't wait to start doing exercise again.  My right foot was operated on few years ago, causing walking long distances a problem.  Hope this works, will let y'all know. (smile)

We know, without a shadow of a doubt, that the Lord has given me these days of life...the Bible does say that He knows how many days each person has to live. So happy to still be here; I do have a bucket list, but that's my secret for now. (smile)

In Revelation 12:11 ~ And they overcame him (devil) by the blood of the Lamb, and by the word of their testimony; and they loved not their lives unto the death.  Talking about Christians, those that give their lives to Jesus Christ the Son of God, and believe on Him.  I've made a lot of mistakes/sins/etc. over my life and since becoming a Christian myself.  If anyone thinks it's a smooth road, that's not true.  I've lived many places in my aged life, met thousands of people.  There isn't a person alive that hasn't had trials and tribulations.  Not one.  Everyone goes through the fire.  It's what creates in us character and growth. The Bible also says not to despise the chastening of the Lord.  We should correct our children, and if we haven't, we've done them wrong.  We need correction in our lives when we're out of line, so to speak. 

As they say, if someone is walking close to the edge of a cliff, out of love, or not, we warn them, right? If they continue to walk along the edge out, their choice, and fall over and get hurt or die, they were warned. 

So if we know of a way to overcome the grave, overcome sin, overcome hardships, and the list goes on, and we don't tell others, or warn them that there's definitely a hell and a heaven, and they don't just RIP, rest in peace and do nothing but lie down in their grave and deteriorate.  Hey, that's what happens, amen?  Then shame on us.

There are hurting people everywhere.  I find I'm more inclined towards those that are hurting, probably because they WANT someone to help them. Generally speaking.  Those that are content, don't want you to share with them.  Generally speaking.

SO....leave that with you for now.....

It has been quite the journey ~

Journey ~ Something suggesting travel from one place to another.

And that it has been.  I haven't posted since 2013, therefore, I'm going to share some of my medical history and what we've been through.

At the beginning of September of 2008, my husband's twin brother died in a car wreck. The same week is when I began noticing  something was wrong in my body. 

I'd been working as an RN at our neighboring hospital about two miles away from home.  One morning, I told my eldest daughter to take me to the emergency room, "Something's wrong, I can hardly breath.  I don't feel right." When we arrived at the front desk to give the receptionist my information, I almost passed out.  I had to lean against the wall, so they took me directly to triage, my daughter along with me.  As I was sitting there, I looked up at her and said, "I don't feel right." I could feel a sensation at the pit of my belly, like my spirit was about to leave my body. That's the only way I can describe it.  I began to slide out of my chair, but the nurse started talking to me, trying to keep my attention. My blood was drawn for labs and vitals taken, then on to a room to wait for doctor's and lab results. My symptoms were shortness of breath, needing blood (hemoglobin and hematocrit was 5 & 15; EXTREMELY low), and pain started immediately.  After I told them I felt a hard mass on my left side, they took me for a CT, which showed a 21cm spleen. (When I said that, the dr. looked at my husband, who said, "That's the first I hear of the hard mass!"  Which was true; it really didn't seem important to me before). It still didn't occur to me about cancer, so when I saw my medical records and that they'd requested an oncologist, I'm like, "WHAT?!".

It took about a week, I believe, to receive my results after the spleen biopsy. So in September of 2008, I was diagnosed with Myelofibrosis, something I'd never heard of as a nurse.  It's a quiet, chronic disease that you don't know you have until symptoms occur,  which may be many years down the road. The bone marrow isn't able to produce blood cells due to an enemy called Jak-2. (It isn't genetic/hereditary and unaware of how a person gets it.)  The spleen and or liver then begins to work harder to help to produce these cells, which causes the spleen/liver to enlarge. My spleen was pushing organs aside and pressing against my stomach, making my body think it wasn't hungry, or unable to put anything IN the stomach. 

The oncologist I was assigned to was definitely not one of empathy. Altho I needed blood, often within the next few months, the only thing he really told me was that there was nothing he could do for me; "Do you understand? There's nothing I can do for you."  The only reason I even heard about MD Anderson as a prospect was from the doctor on call.  When I was at the neighboring hospital, again, to receive blood over night, the on call dr. said to me and my husband, "You do know about MD Anderson, that they have research medications for this disease?"  No, we'd not been told that by anyone, especially my own oncologist.  He gave us the information, said some have to wait to get in.  I was very fortunate, I was accepted by Dr. V almost 2 weeks later. 

We believe with all of our hearts that the Lord led us to MDA and to this particular doctor.  He has saved my life several times, by providing the right research meds...Prognosis is usually 5 years by the time you're diagnosed, because you would have had it many years before symptoms occur.  I'm still here ten years later, I KNOW it is due to the Lord bringing me to all the right doctors, etc.  For the next several years, I went faithfully to MDA and performed all protocols they required; going every day for few weeks to every few days a week to now and then to once a month to supportive care to manage my pain. 

The pain was all over, bones, mucles, joints,.....Took a long time to finally figure out what really worked for me, and that wasn't until July 2016.  Prior, we just kept trying different meds.  Took the edge off, but was never free from pain.  One dr. said I had fibromyalgia, put me on certain meds for that. I lost a lot of weight initially, like a "medical anorexia".  Couldn't eat anything in front of me, and I'd go to a restaurant and just go in the bathroom after looking at that wonderful food and just had NO appetite.  Eventually I did gain weight and was able to eat, when a research med was working for me. 

I went from research meds that worked for few years, to having to try a different one because it would stop working.  The last one I was put on was in June/July 2016, and made me so sick, I had to quit taking it after just a few days. Or was it the spleen infarction from the enlarged spleen. Right after the last research meds I was on, a sharp pain, similar to the feeling of pleurisy in my left chest/shoulder are, l appeared like not being able to take a deep breath because of the pain.  Later found out it was a spleen infarction. 

I couldn't eat or drink, everything came up and along with any pills.  I finally decided to go to the nearby hospital, where I used to work and had been several times (my main hospital is MD Anderson in Houston).  I chose nearby because I felt so sick and I figured (wrongly) that they could do something for me.  Never once was my MD doctor called, even tho we'd given them this information.

These doctors decided there was nothing they could do for me. Which was pretty much true.  There isn't a cure for Myelofibrosis, and since I already knew that MDA had no more research meds for me to try, I said, "Then put me on hospice since there's nothing more that can be done for me. At least hospice can give me supportive care, pain meds as needed, etc."

My husband wasn't able to visit me much because he was at home sick and didn't want to get me sicker.  I didn't even consider consulting him about hospice. I guess I knew it was up to me.  When he came to see me, we talked about it, as he cried...When he left the room, he called my MDA doctor, who, come to find out, knew nothing about me even being in hospital.  Doctor told him, "She's not SICK enough to die!! We can remove the spleen!" ( When I was first presented to MDA with this incurable disease, I was told removing my spleen wasn't an option; it wouldn't make me any better, and I needed my spleen to help generate (?) blood in the bone marrow. AND, the research meds WERE working prior, to reduce the size of the spleen, but would continue to fluctuate.) My husband said, "Well, you need to tell HER this!" He gave me his phone and I spoke to Dr. V, and I agreed to be transferred immediately to MDA for care.

That same night, I traveled in an ambulance from Cypress to downtown Houston on a hard gurney. I was still NPO (nothing by mouth), and I was craving, CRAVING, ice chips!!  We arrived at the ER, I asked my paramedic to please give me a cup of ice chips.  It was WONDERFUL!! I had to remain for quite some time there in a side room in ER until they could find a bed for me on a floor. 

My next quest was to PLEASE give me something for pain.  What I'd been on was NOT working.  I had severe pain, with a spleen so large, I looked pregnant.  I had pain to walk, so I stayed bedridden or in a recliner at home most of the time.  Shortness of breath was the norm, especially on exertion.  That was taken care of, minimally.  And finally I ended up on the supportive care floor, only because that was all that was available (I was told) and a more comfortable bed.

I'll continue this another day....this is long enough for now....Want to get SOME thing on my blog today. Have a blessed day or night.

My marriage was worth fighting for~

I'm so proud of Ms Kay Robertson of Duck Dynasty, and of her husband, Phil. They openly share with everyone what they've been through in their marriage, the bad and the good.

And if anyone watched the first episode of the fourth season, or read their books, you know, it was pretty rough in the beginning, for many years: blatantly rough. And for the most part, everyone goes, "awwww, isn't that wonderful. They're doing great, good thing Ms Kay forgave him or we wouldn't have a show today that was number one and so much enjoyment to watch."

Why is it we can't do that for each other in the now, in real life? Someone shares with a friend what she is or was going thru in her marriage, and you get negative feedback and judgment.  We judge the wife that stays with her husband, saying things like" If my husband did that I would NEVER take him back!" "She's an idiot to take him back, he'll just do it again."

I've been married almost 40 years and there have been some rocky times. Without The Lord we wouldn't have made it, just like Phil and Ms Kay. Our own children are very happy we forgave EACH OTHER and worked things out in our own marriage. Marriage is hard, no doubt about it.

Ecclesiastes 4:9-12 KJV
[9] Two are better than one; because they have a good reward for their labour. [10] For if they fall, the one will lift up his fellow: but woe to him that is alone when he falleth; for he hath not another to help him up. [11] Again, if two lie together, then they have heat: but how can one be warm alone ? [12] And if one prevail against him, two shall withstand him; and a threefold cord is not quickly broken.

Nothing is impossible, and if you're having hard times, seek out Spirit-filled counsel ours, not all counselors are good ones.  If you ask the Lord, he can guide you all the way and get  the help you
need: He certainly helped me.

The 2011 Japan tsunami...

Wanting to get started on some things I noticed about the tsunami....

In some of the towns after the 2011 earthquake, the residents familiar with tsunamis, had been thru it before, knew to rush to higher grounds.. Then there were some that didnt take it seriously, "not going to affect us" or it wouldn't reach them, the waters had never gotten that high in all the years before, so they ignored the urgency to get to higher grounds quickly. (These were comments made by survivors.)

One elementary school, the teachers debated too long on the necessity to reach higher grounds so by the time they decided to do,so, the waters rushing about 500miles an hour, drowned most of the children and teachers. This information came from one of the little boys that barely made it out of reach and survived.

I spent weeks viewing every 2011 Japan earthquake and tsunami utube video I could find.

How some took things seriously and some didnt.  How some were laughing when the tsunami started because they had NO idea it would kill and wash away their whole town. The laughter was gone in about five minutes.

I want to add to this because I feel there's so much to be gleaned from their experiences.  I also feel like we may be doing the same thing, many of us, thinking that things will go on being "the same as always" not "counting the times" or paying attention to world events.

Jesus is returning sooner than we think, I just FEEL it. I look around me and truly believe we are in the end of times as we know it.  America, the world...not to scare anyone but to say, let's not be in denial, let's be prepared and dig into prayer and Gods word so we will be able to hear his voice when He says, GO TO HIGHER GROUNDS QUICKLY, or TAKE OTHERS WITH YOU!!

God is so original: bikers as modern day Minutemen!

That's what I'm seeing as I watch the 9/11 bikers riding to Washington DC ~ remembering who we are, what we stand for. Not forgetting what happened that day and WHO did it.  

1 Corinthians 1:25 KJV

[25] Because the foolishness of God is wiser than men; and the weakness of God is stronger than men.

1 Corinthians 1:27 KJV

[27] But God hath chosen the foolish things of the world to confound the wise; and God hath chosen the weak things of the world to confound the things which are mighty;

1 Corinthians 1:31 KJV

[31] That, according as it is written, He that glorieth, let him glory in the Lord.

Standing up for our country, FIGHTING for our rights, all of us.