P.O.T.S.

Yesterday, my son, Caden, stayed with me while I had my chemo visit, and my husband, along with his parents, took our daughter Cara to Texas Children's Hospital. We have been trying for over a year and a half to find what was causing her fainting/near fainting, nausea and dizziness she has been experiencing. 

My son and helper at MDA.

When she would have these 'episodes' she would turn very pale - even her lips would lose all their color. We've taken her to the ER, to her doctor, to a cardiologist who ordered an echocardiogram and tilt test, her gynecologist did an ultrasound and other tests - all came back negative. Her PCP then ordered a 2 hour sugar test, which came back abnormal at the 2 hour sugar level but they didn't think it was serious, and apparently the endocrinologist at TCH didn't think it was a problem, either. 

My Sweetie!

So she finally saw a neurologist at TCH and he took a look at all the data from all the previous tests, asked all kinds of questions, checked her out, then gave us a diagnosis - Cara has P.O.T.S. - Postural Orthostatic Tachycardia Syndrome. (You can click on P.O.T.S. for a complete definition.)

The short version is her blood pressure is too low which causes her blood to not flow as it should, affecting different areas of her body. She will need to take several salt tablets daily, an iron pill and drink lots of fluid. After a few weeks they will do blood work again to retest and see how she is doing. Cara was also accepted into their clinical study for children with P.O.T.S.  They want to see how well P.O.T.S. children absorb iron, so any tests related to this study will be taken care of by the hospital. We will get more info on her condition but not have to pay all the co-pays. God is good!

Me at MDA, July 11

The past couple of days have not been too good for me - I had a severe headache - probably a migraine - on Tuesday and no medicine would help the pain or nausea. I threw up and felt horrible and dizzy and I wondered how I would be make my visit to MDA the next morning. But on Wednesday I woke with just a mild headache, however I still had nausea, and even after taking my nausea medicine I still experienced it all the way to the hospital.

It was made worse by the fact that the normally 2 hour drive took over 2 hours and 45 minutes as it was raining and we got caught in the morning rush hour traffic! I was nearly 45 minutes late for my appointment and shaking so badly I could barely walk when we got there.

However, after the chemo I started feeling much better! Weird! Maybe because they always give me a saline solution with the different medicines? Whatever it was, I was so glad when the nausea left me and today has been a much better day, no nausea at all! I was even able to run errands. Thank you, Lord!

I did post on Facebook when I had the sickening headache and had people praying for me. God did answer prayer, it just took a little longer than I wanted (which is usually the case - I can be very impatient!) 

Thank you to those who are praying for my entire family, we sure do need it! Please say a pray for another family friend who just found out she has cancer on her kidney. She is about my age and Bryan has known her since he was young. Pray that they will be able to get all the cancer when they remove her kidney and pray that it has not spread. There is too much cancer going around! Please pray for a cure!

May God bless you all with a very special blessing today!

All Numbered

Still here and kicking!  ;)  Or maybe I should say 'slipping.'

After 'reaching over my head' and pulling on my port last Wednesday, I then proceeded to slip in the shower on Thursday, landing pretty hard on my left foot and catching myself with my right hand. Thankfully, my port didn't hurt at the time nor all that much later in the evening. But I must have given myself whiplash because the back of my neck hurt all night long! Not even the narcotic pain medicine made my neck feel better.

I called the next day and talked to the port nurse and told her what all I had done - the reaching and the slipping in the tub, but after having me describe how my two incisions looked, she didn't think there was a problem. So, hopefully, no more bumps or bruises from here on out!

I am feeling better today, but am still surprised how quickly I go downhill when I start any activity. After about 20-25 minutes, I will start feeling very tired and then nauseated. I don't know how some people are able to continue working while doing chemo - God bless them!

This week, I will be a third of the way through my first 12 chemo sessions! Yea! Also, on Wednesday, my daughter will visit with two specialists at Texas Children's while I am at MD Anderson. 

Peach fuzz, while I still  have it!

She will see an endocrinologist who, hopefully, will rule out diabetes for her. Then she will see a neurologist who thinks she is a good candidate for a clinical study he is conducting. She has the same symptoms as in the study - fainting, near fainting, nausea, poor temperature control, etc. If she is selected, maybe that study will help determine how best to treat her as well.

Caden still is having trouble with his Crohn's, but isn't wanting to start with a new doctor and clinical trials, so please keep him in your prayers. Specifically that the medicine, Cimzia, will start working again!

While you're praying for the health of my son, daughter and I, please put in a prayer for my husband, Bryan, as well. Please pray specifically that he will have the strength to handle his entire family having major illness/diseases all at once. He is juggling taking us all to our doctor visits while working full-time and part-time in his home business! Sometimes I think he probably needs more prayer than the rest of us!

By the way, as you can see from the picture above, my hair is gone. I had noticed a lot of hair on my hands when I shampooed last so I went to see my hairdresser for advice - she has helped several women who have lost their hair through chemo treatments so I wanted to know if I was over-reacting about my hair loss. When she ran her hand through my hair and came up with a fistfull she said that from her experience, I only had a day or two left. So, since numerous hairs were already falling into my food (yuk!) I told her to take go ahead and take it. At least I have a nicely shaped head, or so I've been told. ; )

*     *     *



Are not two sparrows sold for a copper coin? And not one of them falls to the ground

apart from your Father’s will.  But the very hairs of your head are all numbered. 

 Do not fear therefore; you are of more value than many sparrows.

Matthew 10:29-31

Spiritual Fruit

Well, I got through the port surgery ok, now if I can just get through the recovery!


Bruise from Last Chemo Infusion

I'm not supposed to stretch my arms up over my head or straight out in front of me for at least three weeks. Yet, what did I do today without thinking? Yup, I lifted my right arm straight up over my head and even stood on my tiptoes reaching for something when I felt the pain and pulling at the port they had just put in!

I immediately sat down and mentally berated myself as I tried to see if there was any bleeding or damage that was visible through the bandage. There didn't appear to be anything but I was still having pain. So I asked the kids to pray and I prayed too, crying, mostly because I was mad. (I cry when I'm really mad, and I was so mad at myself!)



Then I called Bryan because I always confess to him whenever I do something stupid. I think I do that because he is usually so easy going and reassures me that I'm not stupid, that we all make mistakes. But this time he wasn't so easy going.  



He immediately came home and wanted to know what I thought I was doing getting up and moving around like that anyway! By this time the pain had faded some but I was still scared. I'm supposed to take the dressing off around 8:00 this evening and I'm worried now I might see some blood, or what if I messed up the stitches or pulled the skin away from the port? Or worse yet, what if the line that is going into my jugular vein was pulled? Ugh, it hurts to even think about it!

But as I'm typing this I'm not having any pain at all, just back to the itching that started earlier today. So, we'll see if everything is okay when I remove the bandage and replace it with a new one tonight. 

And please pray that I will SIT STILL and not try to do anything myself while I heal up! I am so used to being in control that I don't have much patience waiting until someone else has the time to help me. So guess what my spiritual lesson is for today? You guessed it, patience, as in Galations 5:22-23:

"But the fruit of the Spirit is love,

  joy, peace, patience, kindness, goodness,

faithfulness, gentleness and self-control."

Hopefully, I have learned this lesson for the remainder of July (and beyond!)

By the way, the muscle spasms are much better, maybe the Benedryl that they gave me during the infusion and the one pill I took last night helped, but I think it's more the prayers of God's people!

I had several contractions late last night, one that was really tough - it made me bite my tongue when my jaw and stomach muscles spasmed suddenly. But after that I didn't have any more and so far today have not had any, even without taking any more Benedryl. Thank you, Lord!

Weak Spots

Another Rainbow, Right over our Church Today!

Well, I've made it through the roughest part so far. It's really weird how the muscles in my belly and jaw would contract then release for about 36 hours straight! (see previous post) 

It finally quit on Saturday morning leaving me with a very sore stomach and all of my teeth sore and hurting. The worst of the shaking subsided as well on Saturday, but I still wake up every morning shaking pretty good. Maybe that part is the narcotic pain medicine? Of course, I'm guessing at everything, but then the doctors seem to be doing the same thing. They said my symptoms were unusual and that's why they wanted me to go to the emergency room if the muscle contracting didn't subside. 

But I don't even know where the ER is at MD Anderson and didn't want to go anyway. And my Chemo book, that they gave me, said muscle spasms can be a side effect of chemo. So why is my case unusual? I already have a rare kind of cancer, do I really need unusual side effects as well?  -.-

I had thought that it may be the pain medicine making my muscles contract, but even after not taking it for 12 hours I was still having contractions and by then in a lot more pain. So, I took a second muscle relaxer - (shhh, don't tell anybody as the triage nurse told me to wait until the next day to take one but I was desperate and did not want to drive all the way to the emergency room. Besides, they would have probably done the same thing! : P )  

The second muscle relaxer seemed to help, or maybe whatever was causing the contractions was finally easing off. Or maybe it was withdrawal from the strong steroid medicine they were giving me before they start the Taxol (chemo drug). It does have withdrawal symptoms that are similar to what I was experiencing, however, I didn't have them the first week of chemo.

This week I get my port and will have my third Taxol treatment. I am hoping they will be able to cut back on the steroid amount, as they said they usually do after a few treatments. Please pray that I don't have any bad side effects this week. I'm already having to take pain meds more often than I thought as the chemo is affecting any weak spot in my body, like joints, and what seems to be the weakest spot so far - my right lower back area. It hurts nearly continuously, even with meds, and without meds I can barely walk! Never knew I was in this bad of shape.

I have decided to start reading a devotional called Battlefield of the Mind. I am catching myself, again, watching people go about their daily lives and getting jealous all over again that my life is so altered. With so many physical problems sometimes it seems so hard to believe this verse:

For we do not wrestle against flesh and blood, but against principalities, 

against powers, against the rulers of the darkness of this age, 

against spiritual hosts of wickedness in the heavenly places. 

Eph. 6:12

But God is showing me that as with Job, the battle may seem physical, but is actually spiritual. Just as Satan tried to get Job to 'disown' God by bringing much physical pain on him, sometimes our pain is to try and get us frustrated and angry with God as well, destroying our relationship and testimony. 

I'm hoping this new bible study will help me stay focused through the physical pain - that God is good, He is in control and He will help me fight this spiritual and physical battle.

Still, I ask for the prayers of God's people that the pain and muscle spasms will not be like they were last week! :)  Thank you, prayer warriors! May God bless each of you abundantly this week!

Rough Day

Not a good day today. Having the shakes and muscle spasms. In fact, I had them all night which made it difficult to sleep. Waiting on the doctor to give me some advice on what to do or give me some new meds to take. I don't know if it's the pain medicine or chemo or withdrawal from the nausea medicine that I don't need at the moment.

I'm not to clear-headed either and it seems difficult to see sometimes. I don't know what to think about it all, could use some prayer, thanks!

A Good Session Today

Bryan 'reflecting' on my meds 

Oh, taste and see that the Lord is good;
Blessed is the man who trusts in Him!

...The eyes of the Lord are on the righteous,
And His ears are open to their cry.

Psalms 34:8,15

Thank you for the prayers, today was much better than last week!

The nurse this time took over 30 minutes to infuse the steroids which are given to help block any reaction to the chemo. Then, she waited another 30 minutes before starting the chemo. I did not have a headache like last week, in fact, I barely had one at all and it went away fast. She said they must have given me the medicine too fast last time to cause a headache like that.

Then when my IV, which she put in my arm this time leaving my hand free (unlike last week,) started stinging and hurting she told me that sometimes it does that when the drip is too fast so she slowed the drip, which helped a lot. I did not have nausea and was even able to eat lunch without a problem!

I did start feeling a little nauseated by about 2:00 but I had remembered to bring my pills so she said it was okay to take one and I have not had any nausea since! Thank you, Lord!

Today's nurse was in another department as they were too backed up in the first one and sent me over there. I wish I could ask for this nurse every time! I guess I'm going to have to start being aggressive. Some of you may laugh because of my 'standing up for what I believe' has been known to 'ruffle feathers', but I really do not like confrontation and try to avoid it whenever possible. However, it may be time to tell them to slow down because I don't react well to a 'fast' infusion.

A good friend brought over a homemade rice and chicken dish that was delicious! We all loved it and the homemade bread that her daughter had made, too. That really hit the spot - especially with Caden! After we had our 'slice' he claimed the rest, drizzled it with honey then took it to his room to eat all by himself. I think he was making sure no one was going to ask for a bite! :) It's good to see him eating, he needs to gain a few pounds again.

Well, I took my pain meds for the first time tonight as apparently the chemo is what's causing my back spasms and pain that's keeping me from getting the sleep I need. And tonight will be round the clock nausea medicine to keep that at bay since Caden is doing better this week - he still is having symptoms, but it may be the antibiotics he's on, so please keep him in your prayers.

Will check in again soon and let you all know how I'm doing - if there are any other side effects. The next big thing is my port surgery on July 3rd followed by my third chemo treatment. Two down, fourteen to go!

I Am Weak, HE is Strong

UPDATE:

I retitled this blog to more accurately reflect what I was trying to say. From what I read in the bible, it is only in temptation that we will not have more than we can handle. (1 Cor. 10:13) But with grief, heartache - our weakest moments when life is too much - we are never told we won't have more than we can handle, only that we will not go through it alone - He has said, "I will never leave you nor forsake you." Heb. 13:5.

We are told His grace is sufficient for us, His strength is made perfect in weakness. We are to have courage, and to trust in Him (2 Cor. 12:9, Is. 41:10.) For me, the only way to do that is to keep His word close, to meditate on it, and to have His people praying for me. Thank you, Lord, for the promises of your word and the prayers of your people!

 -------------------------------------

Original Blog:

Isn't it just like Satan to attack just after you've been praising God for how He has provided for you? 

This past week we were dealing with our son's constant pain from his illness, problems getting his medicines from the pharmacy, my meeting at MD Anderson with all the different doctors and then the first chemo treatment with the on/off side effects I am experiencing. This has considerably raised the tension in our house.  

Unfortunately, yesterday afternoon this led to a rather unpleasant episode at our pharmacy when my hubby and I found out that once again, there has been a problem with our son's prescription and we would have to pay four times the price we paid just last month to pick it up!

My husband, who is usually so easy-going, just about lost it. He was declaring, rather audibly, how he felt about the situation and I, meanwhile, thought he was making a scene (probably me being over sensitive.) After a couple of minutes I rather loudly told Bryan to "Stop! Just stop!" Then I was embarrassed at how loud I was and ashamed at how our marriage must look to other people.

In that moment, it all seemed so pointless to fight cancer - it just may win after all. Fighting cancer, fighting Caden's Crohn's, fighting whatever our daughter has - it's all too much. Who do I think I am? Christian or not, it's all too much!

There are a lot of well-meaning people who say that God won't give you more than you can handle. That sounds good, but I don't believe it - never have. If I could handle it, why would I need God? I do have more than I can handle, my family has more than they can handle! Even the Apostle Paul had more than he could handle as he asked God three times to take the 'thorn' from him. (2 Cor. 12) But God told Paul “My grace is sufficient for you, for My strength is made perfect in weakness.” 

I - my family - we are weak. We need the prayers of God's people, we need His strength to handle all the many battles we are facing. We need to trust that He will provide it as He has promised:

He gives power to the weak,
And to those who have no might He increases strength.

Isaiah 40:29

God's Love

When I was first diagnosed with cancer, I had a fleeting thought of why me? I have been a pretty good person, I never deliberately ever try to hurt anyone, I'm still married to the same man for almost 24 years, I go to church, I read my bible, I pray. Besides, my kids already have their own medical problems; cancer is the last thing this family needs! As always, God speaks to me by His word, and this is the passage that he used:

He has not dealt with us according to our sins,
Nor punished us according to our iniquities...

As far as the east is from the west,
So far has He removed our transgressions from us.

Psalms 103:10,12 

God is not dealing with me according to my sins. No matter how good I think I have been, I'm still a sinner. The fact is, I deserve cancer. Period. But this isn't from God because He will never deal with me according to my iniquities. As His child, He has already removed them from me - as far as the east is from the west. This cancer isn’t from God and I can rest assured that He will never leave me nor forsake me.

Donations from some very generous people!

The night after my first chemo treatment was a difficult one. I had just started having some nausea when my son's Crohn's (read more about that here) started flaring badly and he was in so much pain we thought we were going to have to take him to the ER. So I didn't take the new nausea medicine as I wanted to be as clear headed as possible for what might lie ahead. 

The good news is, after putting out a call for prayer (yeah for prayer warriors who stay up late!) his pain started fading and he did not have to go to the hospital. The bad news is my nausea started coming in waves all night long. But thankfully by morning, I felt much better. I was weak and shaky, but able to make it to the next doctors appointment - the dermatologist to check out the lesions on my forehead. And more good news - the lesions are not cancerous, just some type of skin condition. 

When the dermatologist found out I had breast cancer he wanted to specifically know what kind, but I couldn't tell him as they haven't given me an official diagnosis yet! It was kind of funny, he said "They had to tell you something" and I replied "Yeah, that I have a rare form of breast cancer" and he looked at me like I was crazy. So, I told him how it was only in my lymph nodes under my arm and they couldn't find it anywhere else and the biopsy tissue cancer looked like it was from the breast. (Apparently, cancers look like where they originate from - lung, ovary, liver, etc.) 

The doctor said he supposed it was possible. Then he continued to say that it's well documented that melanoma can sometimes appear in a spot, but the body somehow fights it off and then later it will manifest itself in a lymph node. So he supposed I could have developed breast cancer, my body fought it off, then it manifested itself in my lymph nodes. One thing I've noticed, doctors are very curious people (in more ways then one. ;)  They are always wanting to figure things out, which is a good trait for a doctor! 

In other news, my nausea was almost non-existent yesterday. I got pretty tired early, though, and went up to bed at about nine. Didn't get up until almost noon today! I didn't sleep the whole time but felt pretty tired. When I first got up I felt pretty good, but the more I move around the worse I'm feeling. I already have a mouth sore, my joints are starting to hurt and I just don't feel right. My chemo book said this would happen, but I was hoping I'd have a few more treatments before it would kick in.

My chemo book also has a checklist of things I'm supposed to do every day now; shower with mild soap, use moisturizer daily, gently brush teeth, floss only if I usually do and do not go into gum area, use a baking soda rinse three times a day, wear slippers to protect my feet, protect your skin from sunlight by wearing a hat and long sleeves (yeah, in a hot Texas summer) and on and on. Apparently, chemo is hard on the skin.

I started trying to do everything this morning but forgot moisturizer, so I guess I need to make a daily checklist. If my soreness gets worse I guess I'll have to take the pain meds they gave me, which I'd rather avoid, as it is a narcotic. (They make me feel weird.) But, enough complaining. 

I'd like to thank some very generous people who gave me the items pictured in the photos above and below. I have been so busy with all my doctor visits that it has been difficult to get everything that I am supposed to have on hand from my chemo book. Two lovely friends tag-teamed and got the word out, then gathered up the supplies to help me. People even put in some things for my teenagers to help keep them happy. There is also a beautiful handmade blanket and head-coverings so now I am ready for when I lose my hair! Thank you so much to all those who donated! You will never know how much it means to me - may God richly bless each of you!

Beautiful tote bag, tray and other items!

Blanket, scarves, gift card, book, footwear, lotion, notebook! Wow!

First Chemo Day

Today wasn't too bad, I guess. I was supposed to get a port - a device surgically implanted under the skin that will be used from here on out to take blood, infuse the chemo and give me any other medicines/contrasts that I need intravenously. It helps 'save my veins' from repeated use. If you want to know more, you can find that info here, but I warn you, it can be icky, especially if you're like me and don't want to see or hear most medical procedures and explanations. But they MADE me WATCH and listen so I can sign the consent forms or they won't help me!

Anyway, they called a couple days ago and told me I was not going to get the port after all because two surgeons decided to take a vacation. When I got there today I was told that these surgeons went to a 'conference.' Sounds much better than 'vacation,' right? The dear doctors are so dedicated to the health of their patients that even on their time off they keep educating themselves on the best way to treat us. Can they help it if the conference happens to be in Hawaii, or the Bahamas?  Not that I'm bitter (to borrow a phrase.)

Fighting Nausea

No, I don't really know where the conference is, but that's the evil thought I had. Not very Christian, I know. Everybody needs a vacation and I would want my surgeon relaxed and happy, not mad and stressed that he hasn't had a vacation in four years, like me. Ok, I'm whining...moving on.

I had been told I would get Benedryl to counter any reactions from the chemo, but when I got there they gave me a steroid - Dexamethasone - instead. I don't know why - they said the doctor ordered it, a strong dose, they said, and that was that. Not really knowing anything I went with it - I don't know how this works!

They gave me the steroid over 30 minutes, but I got a headache at the back of my neck almost immediately. I was pretty sure it was the steroid, but I've had worse so I didn't make a big deal out of it. I thought I told her I had a headache, but Bryan said I didn't, he said he was the only one in the room when I mentioned it. 

So she never knew about my headache until later, when about 5-10 minutes after they started the chemo - Taxol - I started getting nauseated - not real bad - but bad enough. She immediately stopped the infusion and talked to the doctor then gave me an anti-nausea medicine. It worked pretty quick, but when I told her that my headache was gone, too, she looked surprised then was a little stern telling me I should have told her any symptoms I was experiencing. I honestly thought I had, but when Bryan told me later that it was just him in the room. Why he didn't tell her, I don't know. Sometimes, I think this is effecting him more than me!

IV in Hand. Not Fun!

But it has always been that way, when I was pregnant, he craved pickles! Today, when I felt nauseated, so did he and when they put the iv in the back of my hand his hand started hurting! He's a very empathic man.

Well, it has taken me quite a while to write this tonight. I tried to lay down when we got home and although I was very tired, I didn't sleep much. When I first got up from my 'nap' I felt exhausted! Like something is wrong but I don't know what. I have a little more energy now but it's waning fast. My next infusion is June 27th, then the port surgery is July 3rd with another infusion. 

Tomorrow, I have to go to my local dermatologist to get two lesions on my face checked out. MD Anderson told me to go to the local doc and if he thinks it's anything then I will see their skin doctors. So here's praying tomorrow will turn out to be nothing but my age showing! 

As always, your prayers are much appreciated!

Haircut Day

Just before my haircut

My Hubby and I - 1988

Today, a sweet lady who, despite living a hard life, has a very tender heart and  gave me a cute short haircut. This new hairstyle will better suit me for when I will lose all of my hair from the chemotherapy treatments.

My daughter, Cara, age 13

I have had very long hair for most of my life. In fact, it has not been shorter than my shoulders since I can remember! To make a positive out of a negative, I sent my long ponytail to Locks of Love, an organization that makes wigs for children who have lost their hair due to illness. 

Me - June 19, 2012

Amazingly enough, my daughter donated her own hair a few years ago to an organization that makes wigs for women who have had cancer and lost their hair through chemotherapy. It's a nice thought to think that if I get a wig, it may contain my daughter's hair!

Trust in Him at all times, you people;
Pour out your heart before Him;
God is a refuge for us. 

Psalm 62:8