Tuesday, December 30, 2008
Monday, December 29, 2008
Tomorrow is my PET scan. Finally. I know it seems like forever but in reality with the operation and then the follow up issues and the holidays...it has not really been that long. BUT it sure seems like it. Yet here we are and I find myself thinking....can we wait one more day. Nah...not really. But a little part of me thinks of this PET scan like a person who thinks..heck if I do not take the PG test then I really can not be PG , right? Speaking of PG...I wish that were my issue instead of this issue. I mean no I do not want to be PG while I am having these issues..( note I am not using the word sick..I feel a dread when I hear myself say the words "while I am sick") so I use the words "these issues". Just thought I needed to share that with all of you. Back to the whole PG and testing thing...I KNOW we need to know. I want to know. But there is a part of me that worries to know. Ya know? The pet scan will be looking at the body as a whole..But as you may recall they found nodules on my chest wall/lungs as a fluke while doing my scan on my neck. So that is what scares me...I know there is something there already. Is this making sense? Ya know it is 2:15 am and I did take a so needed pain pill. Can I just say my neck hurts tonight...OUCH. Okay there I said it.
So for some medical info. Yes I know the blood thing could of been worse. Heck all of this could be worse....but in reality it stinks. I have been stuck everyday for two weeks. They did stick me the 4 times last week for the oncology appt. But I did need tons of blood work done. What happened was..the blood would clot and we would end up not being able to use the sample. They had to use a certain needle due to my veins being bad last week. The worse is when they say..we are going to try in a vein in your elbow...YUCK and OMG ...are you serious? I am sure we will be talking about a central line when the time comes. Philip has had many of those..and while I hated the idea of him needing one..I grew to love him having one for his meds and blood work.
There were many things that came out of my oncology appt but I thought I would touch on a few of them tonight.
First and really important was the fact that the oncologist is a angel sent from Heaven. She is young and has 4 kids...and I can talk to her like I would any one of you. She is just "normal". I love normal right now.
It is very clear I have a serious autoimmune issue going on. While I was PG it was found that I have anticardiolipin and also Lupus anticoagulant. These had to be treated with steroids and a blood thinner. After knowing this and looking at my records the Oncologist ordered some very sensitive testing to be done. It was explained to me that a autoimmune issue such as mine can be very serious and cause the body to turn on itself. She explained it that the body fights itself and attacks the cells and organs. The type she is leaning towards for me is hard to treat and very dangerous. She said we would NEED to get it under control while we are treating the cancer. Because if we do not ...and we get rid of the cancer..it will not stay away. It is a dual issue. My first treatment for it is a high dose steroid treatment. It will need to be a higher dose and hard core due to me having steroids with my PG from 15 weeks thru delivery. As she talked about the steroid treatments she asked how my marriage was and if my DH was supportive. Humm...I guess she is setting up how hard all this could be. LOL. But we will do it..we will..we will..repeat after me..WE WILL...right?
Next...I had a certain test done that came back elevated. It is now being done for a DNA testing...something I would never of really done. Not that I am against it...I just would rather of not known. But now I will know. With this info comes a price..the price is..what to do with the info. It was clear from her that IF these test came back elevated we would need to proceed with a double mastectomy . Needless to say that was hard to hear. One issue is...I have a lump found on the left breast on mammogram and a follow up ultrasound. We had planned to do a MRI of the breast..but after the original first stage of the DNA testing she said wait because we may end up just having to remove the breast. My mind said WHAT are you talking about..My heart said...Dear God...NO . But my reality says..whatever it takes. The reality part is said in a whisper. But I will do whatever it takes. I just hope it does not take that. Okay let me rephrase that...I will pray it does not come to that...and if it does..then help me know it is a clear path answer and the right thing to do. I do know that this is the second oncologist who has said this..so I feel pretty satisfied this would be the right path to take IF the test is abnormally high.
One last issue...I think I mentioned I had the infection on my face. They took cultures . The results were sent to my Dr and she called me Wed to explain what they were and what it meant. The bottom line is..it is a odd , weird and scary infection. I am pretty sure I got it while in the hospital. I have been on antibiotics for 10 days not to treat it. I have been done for 2 days. I now have 6 spots vs the two spots. I will be calling in the morning to see what we need to do. I know it sounds vain..but I hate to have it on my face and I hate to wear the bandages on my face. Can't a girl just have a place to put some lip gloss? So I will get to the bottom of what we need to do tomorrow. I worry a little cause one is by my eye...Not wanting that...ya know?
I would like to share how blessed and thankful I am ....Christmas eve I was so sick. I threw up all day and no matter what I did , including ZPhron I could not stop being sick and not get my pain under control. I made myself pull my head out of the toilet and fake it till I made it. We ended up having a nice Christmas eve at my inlaws. It was really important to me to make sure the kids had a nice time..and they did. Something about kids on Christmas ever is magical.
I know I have rambled tonight. I just had things I wanted to share and I dumped it out here. If I did not have to be up in a few hours I would go back and work on this post more...but at 2:50 am ...it is what it is...I have a feeling you all understand.
I am blown away with the cards and the sweet notes of encouragement. I would like to thank Anna who did not leave a address of a blog address. Anna your kindness was overwhelming. I am thankful and humbled. Thank You so much. There are many more I need to thank and I will in private emails during this week.Watch for my emails. But Miss Anna made it hard for me to do that with no contact info...lol. And I had to let her know how much she touched my heart. So all your sweet ladies who are sending me cards and messages . I LOVE them and I read everyone of them. I have the cards all over the house as a reminder..I am never alone. Thank You all.
I will be paying back the kindness by playing it forward...soon.
Okay 3 am and I guess I have rambled enough...sometimes I think I should hit delete when I do these type of post...but I won't. I have faith most of you will get where I am coming from, even at 3 am.
Thank You all for your support..I FEEL the prayers and the SUPPORT. I am so blessed by each of you.
Sunday, December 28, 2008
Emergency Telephone Numbers
These are more effective than 911
You are sad, phone John 14
You have sinned, phone Psalm 51
You are facing danger, phone Psalm 91
People have failed you, phone Psalm 27
It feels as though God is far from you, phone Psalm 139
Your faith needs stimulation, phone Hebrews 11
You are alone and scared, phone Psalm 23
You are worried, phone Matthew 8:19-34
You are hurt and critical, phone 1 Corinthians 13
You wonder about Christianity, phone 2 Corinthians 5:15-18
You feel like an outcast, phone Romans 8:31-39
You are seeking peace, phone Matthew 11:25-30
It feels as if the world is b igger than God, phone Psalm 90
You need Christ like insurance, phone Romans 8:1-30
You are leaving home for a trip , phone Psalm 121
You are praying for yourself, phone Psalm 87
You require courage for a task, phone Joshua 1
Inflation's and investments are hogging your thoughts, phone Mark 10:17-31
You are depressive, phone Psalm 27
Your bank account is empty, phone Psalm 37
You lose faith in mankind, phone 1 Corinthians 13
It looks like people are unfriendly, phone John 15
You are losing hope, phone Psalm 126
You feel the world is small comp ared to you, phone Psalm 19
You want to carry fruit, phone John 15
Paul's secret for happiness, phone Colossians 3:12-17
With big opportunity/ discovery, phone Isaiah 55
To get along with other people, phone Romans 12
For dealing with fear, call Psalm 47
For security, call Psalm 121:3
For assurance, call Mark 8:35
For reassurance, call Psalm 145:18
ALL THESE NUMBERS MAY BE PHONED DIRECTLY.
NO OPERATOR ASSISTANCE IS NECESSARY.
ALL LINES TO HEAVEN ARE AVAILABLE 24 HOURS A DAY.
FEED YOUR FAITH, AND DOUBT WILL STARVE TO DEATH
So the lab tech tells me she wishes Santa would bring me some better veins for her to work with...Ha...Me too.
My veins are just done. Too many IV's and test and meds ...
Looking forward to getting started to get done and back to LIVING .....
Notice we changed nurses half way through...But we got all the tubes filled up and sent off. praying for some good results SOON.
I have a Big test Monday at the heart center. I will be having my PET scan done and a second test they added on.
Looking forward to getting that done and getting some answers about the nodules on the lungs and whatever else they are looking for.
Saturday, December 27, 2008
Someone took a lot of time setting up this message.
I KNOW WHO I AM
I am God's child (John 1:12)
I am Christ's friend (John 15:15)
I am united with the Lord (1 Cor. 6:17)
I am bought with a price (1 Cor 6:19-20)
I am a saint (set apart for God). (Eph. 1:1)
I am a personal witness of Christ. (Acts 1:8)
I am the salt & light of the earth (Matt 5:13-14)
I am a member of the body of Christ (1 Cor 12:27)
I am free forever from condemnation ( Rom. 8:1-2)
I am a citizen of Heaven. I am significant (Phil 3:20)
I am free from any charge against me (Rom. 8:31-34)
I am a minister of reconciliation for God (2 Cor 5:17-21)
I have access to God through the Holy Spirit (Eph. 2:18)
I am seated with Christ in the heavenly realms (Eph. 2:6)
I cannot be separated from the love of God (Rom 8:35-39)
I am established, anointed, sealed by God (2 Cor 1:21-22)
I am assured all things work together for good (Rom. 8:28)
I have been chosen and appointed to bear fruit (John 15:16)
I may approach God with freedom and confidence (Eph. 3:12)
I can do all things through Christ who strengthens me (Phil. 4:13)
I am the branch of the true vine, a channel of His life (John 15: 1-5)
I am God's temple (1 Cor. 3: 16). I am complete in Christ (Col. 2: 10)
I am hidden with Christ in God (Col. 3:3).. I have been justified (Romans 5:1)
I am God's co-worker (1 Cor. 3:9; 2 Cor 6:1). I am God's workmanship (Eph. 2:10)
I am confident that the good works God has begun in me will be perfected. (Phil. 1: 5)
I have been redeemed and forgiven ( Col 1:14). I have been adopted as God's child (Eph 1:5)
I belong to God
Do you know
Who you are?
Keep this bell ringing...pass it on
'The LORD bless you and keep you;
The LORD make His face shine upon you
And be gracious to you;
The LORD turn His face toward you
And give you peace...
So when I saw this I knew it was a special way to say Thank You All..from one side of the World to another...Click on the link below...
Thank You All
Thursday, December 25, 2008
I had some packages under the tree from a few of my wonderful Blog friends. I never open gifts before Christmas..I love to have surprises on Christmas...and wow I was surprised. Thank you and I will be emailing you all soon. But for now just know I was shocked and as Emily said when I opened the...Mom are you crying? Yes Emily...but they are just sweet tears..the best kind. So Thank you so much.
I can not wait to show you all a picture of all the cards I have gotten. I have so enjoyed getting them each day in the mail. And wow the words of wisdom...what a blessing. You all are VERY smart ladies. I am reminded daily...I am NOT alone. Thank You ALL.
I have a lot of medical updates...but you know what...Not today. This medical stuff has taken too much away from the holidays already...and I just do not want to make this about that today. There will be plenty of time for that...right?
I know I say it often but I need to say it again...I have never felt as blessed and loved as I do right now. Things are hard and scary..I am worn down but I am not alone.
Wednesday, December 24, 2008
Let me know what the kids think...
Wanted to share with all you mommies...let me know what you think of it...
Tuesday, December 23, 2008
Tell me who gets the cool mom award ? I may not be able to hold my head up....BUT I found Twilight online and Emily has been watching it nonstop. Santa came early for Emily.
Thanks Davixis for passing this along to me..oh I mean Emily. Cause you know it is all about her and Edward. LOL
Monday, December 22, 2008
Philip has had a hard time today. His right arm has been having nerve pain today. This is something that happens due to his stroke and damage from the multiple operations to repair damage.
His left arm has given him a fit since Sat night. He has been having alot of pain with the muscles and the nerve. He has needed meds non stop all weekend.
And to top everything off he has had some pretty serious headaches. Friday night he had a seizure and as a aftermath it just takes a toll on him.
Philip has some procedures coming up . He has a specialised scan to look at the blood flow and nerve branches. Once again the shunt will be unset with this. This is always hard for him.
And he will also have some surgical intervention to try to help with the pain. I am so looking forward to him having some relief.
I had plans to write more...but I just can not tonight. I need to be done online. I know you all will understand.
Thank You all for your support with Philip. He is such a wonderful young man. I am so very blessed to be his mom. So very blessed.
All weekend I have have been a bundle of emotions. I seriously think I am going to go crazy trying to figure out how I am feeling. I can not figure out how I feel. It is now 1 am and I can not sleep. I decided to see if maybe I could pour out my heart and figure out through my written words how I am feeling and how to fix these feelings. Something has to be figured out, worked out, settled in my mind , head and heart.
Raw Emotions is me. I have a feeling many of you will say I am being too hard on myself...some may think I am a emotional mess and a few may think I am having a pity party or a melt down. Maybe all three are right. I have thought about HOW to explain how I am feeling so it COMES across in the right way...but then I remember a post where I said I would just be me. But lately I do not know who ME is. I do not know this person who is feeling out of control. I must admit that I have NEVER felt this way and I am not good at this.
I always have had a we can do this attitude or a we will just deal with it planner...a fixer and a doer . I am doing none of those things right now and it is starting to make me feel a tad out of control. Okay a confession...a lot out of control...but I am trying to ease into this post.
I am not a person who focuses on looks...but today my daughter was looking at some pictures and as she clicked on some..I saw a few of me that made me turn away. I looked like a person I am not right now. I miss that person. I looked put together and happy and vibrant. I am not that person now and I think that is wearing on me. I have bandages all over me...now also on my face. Drains and holes that need to be stitched and un stitched and restitched. Places that need to be scraped and cultured for MRSA. How the heck did all this happen. I know this may sound like I am worried about my looks....that is not it. I am just missing being able to wash my hair...and taking a bath...and well going to the bathroom without meds...I hate meds...I throw up daily and that is not pleasant with the neck all bandaged up. I now have the kids cold with a gosh awful cough...Tonight I am in bed with two different socks on with Vicks on my feet...Emily did it for me..cause last week I made her do it.
Okay let me try to explain this different. You know how you see people who are battling things and they look like they are in control..weather it is their emotions, the way they have put a little lip gloss on just to make them feel better...and even more important their faith is rock hard? I wanna be that person. Sorta like I would like to fake it while I make it. But there is no faking it right now. I think the bandages on the face ruined the fake it plan. LOL. Once again..this is not suppose to come across as it is about my looks. It is about the fact that I do not want to look sick so maybe I can trick my mind into not being sick...for a while anyways. Hummm in my mind that makes sense.
I am going to admit something that my family already knows. I am being plain awful. I am short and aggravated . It seems to take short of nothing to upset me...almost like a awful case of PMS gone real bad. And I can be fine one minute and just crying non stop the next. The wild ride of emotions wears me out and I know it is not fair or easy for my family. Guilt seems to be setting in by the minute.
Speaking of guilt....oh how I hate that this has happened at Christmas. I know Christmas is NOT about the gifts and lights and cookies and Santa trips. But I also know that as a child they look forward to those things. I also know I could have Jim do some of those things...but he is not a mom. I know he is dealing with a lot...more then he should have to. But he just does not seem to get how important these things are to me for the kids. And my goodness ..he is hurting too. But hey Jim if you are reading this...Please try to make a effort to make these next few days extra special for the kids....I will make it up to you when I am better..wink wink. ha..he may run from that offer...he has seen me in a bad way these past few weeks. Humm...
I wanna feel emotionally stronger. I have laid in bed and stared at the ceiling tonight and tried to pray. It just did not seem to be going right...just did not have it in me tonight...I finally said God you already know what I need from you even if I can not find the words...so please help me. Help me feel strong and healthy and ready. Ready to make sure I am okay and here a year from now with my family. A special friend momtoeli told me a few days ago that she is looking forward to next year when we can look back and say..wow last year was hard ..thank goodness we are where we are now.
Okay here comes the rest.....I try to not go here ...at least out loud. But I am trying hard to just put it out here...to let it out so maybe I can figure this out...
So back to the rest of my thoughts...
What if I am not here next year? Some may say ..do not that that way. Trust me I try not to...But... What of this Christmas if my last one ? I know if I had not had surgery and just found out about the cancer ..I would make this a Christmas to remember..Memories to last a lifetime. But as it stands now...I can not even sit up in bed. I have tried to make up for it with the younger two...I found Christmas Lights on Utube...and Cole and I watch tons of Christmas specials. Maybe that will just have to be enough.
Now before anyone thinks I am being negative thinking I will not be here next year..that is NOT the way I feel. I just can not help to have it in the back of my mind. Sometimes when it clicks with me that I have cancer I look at the kids and take a minute to REALLY look at them. To study their faces...I just love them so very much . My whole life I wanted to be a mom...and I am ...a mom to 4 wonderful children...I just worry I will end up not being here to watch them grow up. I worry what would happen with Philip..I have made it my life to protect him and make sure I MAKE SURE he is okay. I worry that Reed will be hurt really bad. He is my sensitive child who does not mention anything he is feeling. He just keeps it to himself. I need to be here to make sure he talks and shares his feelings through life. I so want to watch my daughter grow up and become a young lady. I want to see her be a mommy one day. Who would be here to help her be a mommy. And I know that Cole is 4 and would most likely not remember me. I love him so much and he has truly been the sweetest blessing to our whole family. Then there is Jim. How about I just leave it that I want nothing more then to grow old with him and watch our children make us grandparents. He has been my husband over half my life.
I know that I can beat this...but I do not KNOW that I can. These deep worries seem to make there way into my head and heart ...and then the fear and tears start. I know many many people survive cancer...I just am having the hardest time with the fact that I have cancer. It is shocking to me every time it hits me. How can I have cancer...
I also want to add that I am NOT going to ask Why..I am going to try my very best to say Why not. Life is not about the poor me...look at what I have been dealt...it is about making the best out of what we have been dealt.
I am going to deal with this....but tonight I am having a hard time.
When I thought of the name for my blog months ago...I never would of thought how TRUE the words are...Life is such a blessing.
I want to thank each of you for taking the time to pray for our family. I never thought my blog would be such a important part of my life. It was started just as a family fun blog...and now look at what a path it has taken. It is such a blessing to me to know that when my faith is a little tired and my prays are hard..each of you are doing it for me..and with me. What a true blessing each of you are. Thank you so much.
Saturday, December 20, 2008
Friday, December 19, 2008
You have jumped on my Amy team and you have taken charge. I know God placed you in my life for a reason. You are such a blessing to me and our family. Thank You for being YOU. Thank you Sits . What a blessing for you to share our family on your blog. I feel honored to be a SITsa...All of this has made today easier. Thank you ALL.
I can put on a front and say a token answer to the How are you doing questions..I mean who wants to hear all my emotional up's and down's?
My dear sweet friend MomtoEli asked me the other morning...how are you? I said do you want the token answer...or the real answer? She said ..always the real answer. Just hearing her say that .. the tears started and we talked. The odd thing was..after I had cried and vented to her..I felt stronger and I felt refreshed.
Another way to handle this is...
I can fall apart and feel like I just can not do this. I can moan and groan and feel picked on. The why me..why Philip...the why why why...let me share a little something with ya'll. I do not think why me..I guess I think why not me. ya know..we all know bad things happen. They happen to good, bad and all people. They happen to new born babies and free spirited kids. So who in the world would I be to say why me? I will admit that I have felt that way with my son's medical issues. I hate that he has had to struggle so much. But one thing I was reminded of along the way...I love MY son Philip. On the days I wonder what things would be like without the medical issues..I have to remind myself...he would not be who he is today. And ladies he is perfect. So while I would love nothing more to have him whole, healthy and not have these issues. I have been blessed with who he is today and everyday for the last 18 years. So for his issues I will need to work a little harder on the Why my son days. I will need to come back here and remind myself of what I just shared.
I think the answer is somewhere in the middle. I will just be me...and ladies that may not be a pretty thing. Lately I am not even sure who I am. I am going to use my blog as a safe place for how I am feeling and what I can do to be as healthy emotionally and physically as possible.
I guess I felt the need to share that because things may be rocky for a while. I am a people pleaser to a fault. I think if I did not put this out here I would find myself wanting to put on here what I THINK everyone wants to read. And knowing many of you and learning to know the new friends on here...I think you all want me to just be me...The good the ugly and the blessed days of this battle.
So...I guess the above is my warning on pain meds post...
If you will all stick beside me through this I promise to share ALL of this journey with all of you...just be careful what you ask for..cause things could get rocky fast.
I will never forget the support I have here. I know these may just sound like words..but some days the words you all share with me..remind me...I am not alone and we will just get through this together. Can I get a Amen?
Wednesday, December 17, 2008
As so many of you have seen I am blessed with a wonderful husband who has been very supportive and loving. I know he knows this...but I have loved him for 21 years and I hope we get at least 21 more. He has been really strong for me the past week. Tonight was a little hard for us as a couple. He is frustrated with how slow things are going, of how the path is being sent off to NY for some follow up testing, for the idea that we do not have a nice little package of treatment plans and info and when and what and why. And in truth..I guess him being frustrated made me feel like I was responsible somehow. I know I am not...but in all this it is too easy to feel alone or unable to connect. Tonight was one of those nights. So I hope we learn from that and can learn to both work through the frustrations. I think the idea that this was the first time of me feeling like he was distant was hard for me. I KNOW he is going through a lot...and I wanted his feelings to be all nice and wrapped in a package..funny how we both want the nice packages..huh? But Life is not about that....I learned that a long time ago with Philip.
Please know I am not complaining about things..I am just putting it out here..so one day I can look back and see how far Jim and I have grown from all of this...
I also want to let all of you know how much your support means to me. These words seem like just words. The emotion behind them is overwhelming to me. I have felt loved and supported like I have never felt before. That is what YOU have done for me. How will I ever thank you? I will just have to play it forward to someone else in need. You all are a great example to follow.
I need to try to go to sleep. It is hard to type on the computer with my neck. But I missed talking with all of you. I will end this with the disclaimer that I am on very strong pain meds..so if I rambled...just know there will be more of it over the next few weeks of healing.
Tuesday, December 16, 2008
Some of the pictures are yuck so be careful.
Monday, December 15, 2008
Wednesday after the surgery the surgeon and pathologist both agreed that the masses are cancerous. I talked to the surgeon and requested that Amy not be told of her condition until her follow up appointment. This was done out of love because I did not want her to worry until the tests were completed. It was very hard to keep this information from her but I thought it was the best thing to do. It was also one of the hardest thing I have had to do so far.
The surgeon called Amy today to tell her about the delay with the tests for follow up care and forgot that we were keeping the diagnosis quite until Amy's appointment. So needless to say it has been a long day.
For now we are concentrating on Amy healing from a very difficult surgery.
My wife is the strongest person I have ever met. We will fight and win this battle together.
Saturday, December 13, 2008
Amy's recovery is very hard and today she is in a lot of pain. Today has been the hardest yet. Her incision is draining and her face and neck are very swollen. This makes it impossible for her to eat and she is having a hard time swallowing. Both is these issues have lead to the pain medicine causing her to be sick. A hard time for her. But the Dr had warned of us the recovery for this operation would be long and hard.
Amy is unable to talk on the phone or check her messages. And she is not able to go online. But I have told her of the support in her blog.
Thank you for the support,
Friday, December 12, 2008
Philip is back home for now. He does have a syrnix that has grown and is on his Tspine 3 to 7. This is something that will need to be watched and dealt with in the coming weeks. This is in a dangerous place for respiration issues. It will be watched careful for a few weeks. The neurosurgeon will re scan Philip in 4 weeks.
The Dr has also said that they feel that he has the degenerative nerve disorder which is causing the weakness in his left side. He will be treated for the pain. The disorder can not be treated. Which is very hard for us to accept.
Amy is having a really bad afternoon. Her neck is having some swelling and draining issues that the Dr is watching. She is on pain meds and anti nausea medication to try to help. The Dr reminded Amy today that this operation was very involved and this will not be a quick or easy recovery.
Thank You all for the support.
Thursday, December 11, 2008
Amy had her surgery yesterday and went as well as can be expected. With alot of effort from the doctors they were able to remove both masses in her neck. I took her to the doctor today to have wound checked and bandage changed.
After talking to the doctor today we now understand seems "unbearable" in Amy's words. The doctor explained that she almost had to climb into Amy to get the masses removed. It was a very difficult surgery all around.
The doctor sent us home with stronger pain medicine and some anti-nauseous medication to help with her throwing up.
We will not have the pathology report until early next week.
I really want to thank all of you for supporting and praying for Amy and our family. Amy mentions often how much all of your support means to her.
Hopefully the next update will be from Amy instead of me.
Have a good weekend.
Wednesday, December 10, 2008
I had appts all morning and then we started with Philip's appts.
We spent 3 hrs at the specialist yesterday. You may remember that yesterday we needed to go over his three MRI's. He reviewed them with me and show me each scan ...slide by slide.
The T spine showed a problem with the spinal cord from t3 thru t7...with not a clear picture..he called it a cut of where the issues was pushing any future higher of lower.
Philip's follow up today showed he has lost even more strength on the left side. And as a reminder he had the stroke on his right side and has lost use of that arm after 14 operations from the stroke. So the left side is so very important .
The Dr decided that he needed to call the neurosurgeon and said he would get back to me. He then asked me what was going on with me because he could see the bandages on my neck. After we talked he said how important the chest area was and scared me a little..lol
Tonight at 8:30 my home phone rings. We almost did not answer it...
It was the Dr telling me he had just talked with the neurosurgeon and that Philip had to be at Arnold Plamer ER at 9 AM.
I reminded him of my operation and he said...Oh damn..this is a mess. My thoughts too.
It was decided that my surgery can not wait...it was also decided that Philip's medical issue is worse and moved into the leg and he can not wait. The Dr said he was sorry and he knew this was complicated.
That minute I felt defeated. I have done all these appts ..I have been with Philip since his first brain operation at 6 weeks old. And today I can not be. I so need to be with him and the Dr today. This is a major medical issue and I am very concerned and anxious.
It was decided that My FIL would take Philip. They just left to get there in time. I asked my FIl to please explain to the Neurosurgeon that I am going into a major operation today. And that if he needs brain /spine surgery to please know that I NEED to be with him. And if it can wait to please wait. But if it can not...well..do what needs to be done. I so pray it can wait. And I also know that my recovery is harsh...I am not sure how long they can wait. Is this making sense?
I am going to explain to them at the hospital I need my cell phone with me until I roll into the OR. I so hope that the neurosurgeon can call me before I go into the OR.
Yes my DH can talk to him. But I NEED to talk to him. 15 brain operations, strokes and spine issues...27 orthopedic operations..I NEED to talk to him.
The minute that phone call happened last night...I have felt defeated. Well not defeated but sad and disappointed. Philip's medical issues and health are my life mission. I NEED to know what is going on, why and when.
I am a mess....Philip has left to go to the hospital to make major decisions . I can not be there. Jim has to be in the waiting room to talk with the DR.
And I just want to say..STOP..My baby needs me. Okay he is not a baby..but he is my baby.
This just seems like too much...can I say why why why...why did this not work out different.
I am so anxious that I will not know what is happening with Philip before I go in the OR.
Emily just woke up for school and is having a hard time about my operation today. She is scared and sad. BTW the kids only know the neck issues. We have not shared about the other issues coming up. No need to scare them right now. This is hard enough on all of them.
I know I just dumped this on all of you. But to be honest...I needed to do that. And I know many if not all want to know what I need. I need you all to pray for Philip and the outcome for him today. And pray for Jim...I so hate that he is having all this on him today.
It is a few hours from my surgery ...it seems like it has taken forever to get here ...and now here it is. I have been up all night.....
Yes I am scared. Some about the pain...but more so about the idea that I am out of control. I so have wants and needs to be a good mother and wife. For weeks now I feel like I have walked around with such a attitude of ...we will do what it takes....and now today...I can not find that attitude. Where is it? I feel vulnerable ...and that is not bad. But I feel a mess this morning.
I am disappointed that this has happened for the kids at Christmas. As a mom we all set up how the holidays are going to be...I just wanted things different. I know this is just my emotions talking. The holidays will be what they are...we will do it as a family.
It is all I can do to not call someone...Jim is sleeping and trust me he needs to sleep. The last thing I want is to have him see me like this...He needs to know that I know all will be okay. I bet some of you know what I mean.
I am going to give you some real quick medical info..and then post a blog about Philip. Please take time to read the post about Philip. I so need all of you to help me do what I can not do today...
I know that the radiologist report said I needed a PET scan ASAP for the nodules on my chest. The DR wanted to get it done right away but then it was decided that the anesthesiologist did not want me put to sleep having that done so soon before. It also was decided that the course of action would not make a difference...the masses have grown to a size that the Dr is very concern. She has made plans to have a pathologist in the OR with us. But she did warn me that because of the type of tissue we are looking at...we very well may not know till Monday when the test come back. She also explained that due to the size and location. WE may not get them all today.
The radiology report stated..
Two pathology size nodes seen in the mid line and left of the mid line. These could be lymphoma or metastatic disease.
Two upper lobe nodules were also noted. A full work up needs to be done including a PET scan and a full CT with and without contrast for a baseline.
Also noted a occult mass can not be excluded.
There is the medical info...
The Dr explained that her concern us to start with these. If these are not cancer ..the concern is that these are acting this way to help fight off what is in the chest or breast area.
She wanted to make sure Jim had someone with him today. Which leads me to my next post.
Ladies...please know I have felt your prayers in the past..and I am coming here today to ask you to pray for my family today. There seems to be so much going on..too much. I know God does not give us more then we can handle...but I am feeling pushed to my limit...
Anyone awake for a early morning call from a freaked out crying mess of a person?
Thank you all for every single comment, email, card and friendship. I find it so telling...I started my blog weeks before I found out I had these medical concerns. God knew I needed all of you. And as always he is GOOD.
Tuesday, December 9, 2008
Shirt..Okay there are a few winners....
I need your size...and if you want ..sure add the bra size..haha..Kidding.
If there is not a shirt to fit you ..too big or small...a different suprise will be sent.
Please email me your full mailing information....TODAY if possible..
The idea of this swap is simple...a ornament or a small xmas swap idea..Nothing expensive...$10 or less. heck I have seem cute things for $2.oo. So the idea is a cute swap idea..not a expensive swap gift.
Get your addresses to me today and I will be in touch with you...
I think this will be fun...
I never thought about the fact I know so many children and their families through my CB blogs. And how neat it will for us to know the family we spoil...
All week it has been nagging at me what direction I want to go with this. Yesterday it hit me and I am so darn excited.
I have contacted the person I am interested in spoiling and am so excited to hear back from them.
When I do hear back and get permission I would like to tell a little about this sweet girl and post her picture. Then I would love for some of you as my fellow blog friends to pray and see if you feel lead to maybe join in on my project...I am thinking of a catchy name...
When you hear about the details of this brave girl....you will just WANT to be involved. It will be a blessing to all of us.
So I am excited to post more about this later....
So who is as excited about this idea as I am?
Monday, December 8, 2008
Then I logged on to my emails and sat here with heart just melting. It seemed that the anxiety was replaced with warm thoughts and some peace.
So many of YOU my blogger friends have gone far and beyond the call ..of supporting me and our family. It never fails I log on and see comments or emails that bring tears to my eyes. It means so VERY much to me. Thank You is not enough. I promise I will never forget the kindness . I will make sure I pay it forward.
I wanted to share some other wonderful ladies and their kindness today. I want all of you to know just how special these ladies are. They have all reached out to me and made sure I know they care and support us right now. And once again I FEEL it.
My dear friend Grace has taken my packages and is wrapping them for me. And not only that she is having to number them for me to figure out what is what and to who. She has missed work to take me to DR appts. She will be taking me today for my Biopsy. I will not go on and on about Grace since I have posted about her in my blessing post. Thank You Grace for being YOU. What would I do without you in my life?
There is a very special friend Marcia AKA Rebel. Marcia seems to know what I need and when. She has been a solid support to me since day one. She has written me long emails and said just what I needed to hear. She surprised me with a call on one of my hardest days last week. From day one...she just has been a wonderful support to me. I can not wait to get to meet her and spend hours talking. She has shared her family stories and religion with me. I LOVE to hear her wise words . Marcia....we will have that visit on the porch soon. I can not wait.
I logged on to a online group this weekend to see this post...
A sweet lady who uses the login name OYB...did such a sweet thing for me. I have such peace knowing that on my families behalf She has taken it on herself to gather people to pray for us. Thank You OYB for doing this. It means so much to me.
Amy, you must be so overwhelmed right now! Take one day, one hour, one minute at a time. I've started a prayer chain on my blog for you. I'm sure you have enough people praying for you to heal a village!
Then It is followed up with ..Three other ladies MomtoE and Terry and Christian link the prayer chain to their blogs. OH my goodness..
What in the world have I ever done to deserve this kindness?
I could go on and on with my list of people...but I have a appt in a few..so I will finish up with one last person...
I can her many names...but for this post we will call her momtoeli..
Oh what am I suppose to say? This lady has laughed with me, cried with me, yelled at me, Prayed to me when I told her that was not what I needed..Long story..but she kept praying. And the funniest thing...I could not stand her when I first started talking to her. I even called her a bully. Momtoeli is one of the most special ladies I have ever gotten to know. To say I love her like a sister is not enough.
The list goes on and on...I am blessed....so very blessed.
Sunday, December 7, 2008
I have gotten so much from starting my blog. I never imagined the wondeful ladies I would meet. I am blessed.
This award represents this:"These blogs are exceedingly charming. These kind bloggers aim to find, and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships are propagated. Please give more attention to these writers."
So I need to pass this one to 8 more fablous blogs.
I think it might be fun to do a quick swap...a xmas ornament swap. Something pretty or cute..but something that when we see it year to year we can remeber how blessed we are to have our blogger friends...
Anyone wanna join in? Post and let me know...
Well due to the issues with Philip. I decided that since he will be on steroids we need to watch the germs. I knew we would not be able to do some of the things I had planned.
Then my medical issues came up and that made things even more complicated.
So for a while this has been nagging at me...
I have a idea...and I am excited about it. I thought maybe a few of you might want to be involved also. if not..that is fine. You can still be involved with prayers .
I have contacted the hospice center to see how I can do what I have planned. I want to sponsor a child who is now on hospice . The idea i have is...to find out about them and what they like. Such as if they like a certain princess or hero...I can send them a book or jammies..or bath stuff. Anything to make a smile happen for a little one who is sick and about to go to Heaven.
I know I have a lot going on. And part of me knows I need to think of our issues and deal with them. And you know I will.
But this idea weighs heavy on my heart and I do not want to let it go.
So I am going to get the details and pick a child and family. Then I may see of any of you feel a nagging at your heart to help. Even cards from your children..or pictures.
What a way for us a blogging family to bond even closer together.
I hope I explained this the way I wanted to. Did I mention I am on pain meds..
Any thoughts, ideas or suggestions?
But most important ...so all my faithful friends can know when to pray...I can so feel the prayers.
Monday AM...I will be seeing the surgeon. This was scheduled for later in the day but it was decided after some other test to move up the appt. I will be having a biopsy. And going over the mapping scan I had done.
Monday afternoon....Philip has his long awaited muscle test and biopsy. This is very important.
Tuesday...Philip will see the specialist to go over all his MRI's. We will be getting some answers. And I will be honest and say...I am not sure what to hope for. The truth is NONE of them seem good. But please pray that the path is clear for us. A plan would be nice. And of course Miracles are always wanted...so badly.
Wednesday...Surgery to remove the two masses...although we know from the scan there are three or more. But I will be having the operation . According to the DR the recovery is severe. For three weeks there is NOTHING I can do. I said...are you serious. She was being so strict with what she said I half way thought she was being cute. But she is serious. The place that the masses are is in a scary place. Being so close to my throat and windpipe, I have to be extra careful. So I will do just as she says. Then for 3 months afterwards I will need to be very careful with what I do. Long recovery. But well worth it ...if I can heal healthy from this operation.
Things I am waiting for...
Monday...I should hear from the Cancer DR . He will address the follow up for the lump found in the breast. And more important the nodules found on the chest/ lung area. These were found by accident when doing the MRI of the neck. I know from the Radiologist I will need a full PET scan done ASAP. I am sure the Cancer DR will know what to do.
And he may have some of my blood work back...that would be good.
Also wanted to add...
Philip did have his three MRI's Friday. He was pulling in with my FIL and I was leaving the center. The scan was hard because he has no good veins left. I am pretty sure if he needs more testing and operations..we will opt to have the central line put back in...
His shunt was re set.
His pain is still as bad. On meds and patches. The thing that worries me among other things is..this issue has now gone down into his left leg. When we last saw the specialist he did have the new weakness in that leg along with his left arm..but not the pain in the leg...So it will be good to know what we need to do.
Being that he has no use out of his right arm and hand...we are very worried about losing function in his left side.
Thanks for letting me share with you...I know it seems like a lot to take in..and well it is.
But with all of you praying and supporting us..I know God will bless us..He always does.
Saturday, December 6, 2008
I have no idea how all this has happened. I mean it is not a why me thing. I really am not thinking anything like that...I guess deep down I think..why not me. Things happen to so many people. And in truth I have been so blessed with the issues Philip has. Let me explain...Yes Philip is not well. And things sure have been hard for him. And as his mom , my heart is broken some days with fear and worry. But in the end..it is such a miracle he is here with us. I told God...well I begged God..that if he would let Philip live..I would take whatever he gave me and take care of Philip. It was a deal I made with God. I have to laugh when I say that cause I have a feeling God does not make deals. So I have taken what we have and felt blessed. So how could I say why me now? Remind me of that in the days to come.
But I do need to say that I am worn down. I am so over worrying about things. I feel like I have done nothing but worry for years and years. Almost like holding my breathe and waiting for the next thing. That is a lot of how I am feeling. I guess I just wish I knew what was going to happen. Or maybe it is best for me to not know.
I do know I am not doing "this" the way I want to. I have this idea of how I should be feeling and acting and looking...during this time. And somehow I am not living up to that .
I had this idea of walking around with this smile on my face and being so strong ....and getting my house and wash done. Getting Christmas done. Having my tree done. Oh and let's add having great hair days. Okay not the hair day. But in reality none of this is happening.
I am sick and in pain. I am tired and worn out. I am behind with everything. I just feel a little defeated. I guess I had this idea that I could make everything great this weekend before my surgery. And I have started feeling so bad and in pain....it is not going to happen.
I hate feeling like I am messing up Christmas. I love the holidays. I love doing the special things with the children. One thing we do is..every single night I would take the kids...and we would go to a different neighborhood and see lights. I really wanted to try to do that each night before my surgery. But my head hurts so bad. and my eye is blury ..so that is not going to happen. And I know it is not the end of the world. But I hate not doing it for the kids. I hate that I felt so bad that we picked out the first tree we saw so I could come home and lay down. Maybe hate is not the right word. I am disappointed for the kids. There that is better. I am disappointed that I feel so yuck and can not make these things happen. I do not want to let the kids down.
My neck and head are hurting really bad. The mass I have under my chin is really big now. The other day I noticed a second one...Now it is even bigger and pressing on a nerve. I feel like my face and head are going to explode. I have this cough because the mass is pushing on my throat. The pain meds make me sick. And I look as bad as I feel. My neck is so swollen that my face is hurting to touch. I guess the idea of make up and doing my hair is just not happening. I know that is not important rigtht now..but somehow I think it could make me feel better. Does that make sense?
With me feeling so bad..The house , the laundry, Christmas etc is NOT getting Done. I know other can do it ..I wanna do the stuff with the kids before my surgery.
You know..I think I just figured out...I just hate not being in control...Things are out of control.
I know I sound like I am complaining. I do not think I am explaining things the right way.
This is the Christmas Nail.It is to be hung on a sturdy branch,a branch near the trunk,a branch that will hold such a spike without being noticed by well-wishers dropping by to admire one’s tinseled tree.The nail is known only to the home that hangs it.Understood only by the heart that knows its significance.It is hung with the thought...that the Christmas tree but foreshadows the Christ-tree which only He could decorate for us, ornamented with nails as this.
Friday, December 5, 2008
I had my scan today for my neck. The radiologist called me in and asked me to sit down for a talk. I was thinking it was to tell me about my neck.
He did explain things about my neck and what would need to be done. And while I hated hearing it...I pretty much knew the details already.
What I was not expecting was the...we found something else.
While doing the special scan on my neck they found some nodules on my chest and lungs. The DR explained that these had to be followed up and he was sending a STAT report to the DR and it would be there in 30 minutes. He said we would need to follow up with a tissue sample from the nodules.
So now I am waiting....My in laws have taken Philip to get his shunt re set. As I was leaving the imagining center today...Philip was there with my FIL. I could not take him because I had to be medicated for the test today.
I guess I can admit that today is a really hard day. Makes me just anxious.
Maybe I will have some answers today. I sure hope so...at least a plan of action.