.::Our Journey of Hope::.

2010-12-17T21:39:00.000-08:00

I'm FINALLY getting a few minutes to update this darned thing. I know a lot of you are probably wondering what is going on so here is a quick note...the scans on day one showed what was once thought to be Sarcoidosis (or "Firefighter's Disease") is in fact most likely just scar tissue which has become tumorous. I'm not completely sure why that is and don't want to venture a guess here so I'll wait for my baby to fill me in once he arrives home tomorrow morning. The doctor said that James wasn't exhibiting a single symptom of Sarcoidosis. Hmmm...that little piece of information would have been handy about 6 YEARS AGO!!! *sigh* I'm not entirely sure what all of that means or what the prognosis is and again, I won't until I have a lengthy sit-down convo with him. You'll know right after I do.

His flight out of Oakland was delayed for two hours so he's currently about 2 hours into the flight from Oakland to Phoenix. The airport shuttle doesn't run at 1:00 AM obviously so he'll spend the night in Phoenix and arrive home tomorrow morning between 9 and 10 AM.

2010-12-15T13:06:00.000-08:00

James is right about now wrapping up his Angel Flight to San Francisco. He has an appointment with the Pulmonary Specialist today. Hopefully, I'll hear from him shortly thereafter. I believe he also has a scan of his lungs as well today. As for tomorrow, he will be having more scans that unfortunately require him to fast starting at midnight tonight. I will be updating here at least once a day through Friday, the day he flies back home. Please, please be in prayer for our family. It's been awhile since his last scans and we're hoping and praying that all is still well and that any tumor growth is minimal or at best, nonexistent.

2010-12-08T09:42:00.000-08:00

James will be leaving early next week for San Francisco. He will be back with his original team of doctors (Endocrinologists, Pulmonary Specialists, Arthritis Specialists, etc....a lot of the "ologists") It's been a few years since he's had thorough scanning done so this is a very good thing albeit a rather anxiety-causing thing as well. I know, as Ive always known, that the Great Physician is in control of everything and that He'll get us through whatever transpires but there's still that very easy human emotion of fear that tends to sneak in, especially during the night. I've been having quite a few frightening dreams lately and I'm pretty sure it's because of everything I keep bottled up during the day. So if you could all keep James first and foremost in your prayers and then myself and our chilren also, I would be most grateful. I will update as needed.

2010-01-06T17:41:00.000-08:00

James is home! He still doesn't have the results of the culture (to find out what type of bacteria/virus he has) but the doctor let him come home anyway. Who am I to argue, right?? :-) I'm just thankful he's home. When (or "if" I suppose at this point) I hear of anything regarding the results, I'll let you know.

2010-01-06T10:36:00.000-08:00

James is still in the hospital. His doctor is running some tests to try to find out what kind of bacterial/viral infection he has that's continuing to make him sick. Once they find out what he has, they can prescribe the appropriate antibiotic if needed. Jacob, Leah and myself have already had it and have recovered for the most part. Jamie is home sick from school today because of it. These things always hit James so much harder than the rest of us. When I hear from James I'll let you all know what's going on.

2010-01-05T06:05:00.000-08:00

James has been coming down with a stomach flu over the past 24 hours or so which for most people would be gross and inconvenient. However, for James it is life threatening. He loses electrolytes at such a rapid rate that his body can't absorb his life-sustaining medication. Around 2:00am this morning he was fairly miserable and (as usual) starting to go into tetany. Since we can't have that we had him driven by ambulance to the hospital. I haven't heard from him yet but hope to soon. Will update...

2009-12-29T15:20:00.000-08:00

James is steadily improving. Today he's back on his feet and doing quite well. Thank you all for your much-needed prayers! It's wonderful to have my hubby back!

2009-12-28T10:45:00.001-08:00

My beloved is feeling quite a bit better today than he was yesterday although he had a bit of a rough night overnight. He awoke around 1am in intense tooth/jaw pain. So he took his early morning dose of morphine and an ativan and was able to go back to sleep rather quickly. I pray he can sleep through the night tonight.

2009-12-27T10:01:00.000-08:00

Christmas came and went without any real problems health-wise for James with the exception of the usual hip pain (mostly). He did begin having a bit of pain stemming from a back molar around Christmas Eve or so though. Over the past few days it has become much worse. In fact, yesterday morning he woke up around 5am to such intense pain that was radiating into his jaw and nose area on the right side of his face, to the point where he could hardly think clearly. If he didn't already have such a compromised immune system to begin with I wouldn't be so concerned. Unfortunately, he can't just sit around and hope that things will just get better. Well, at least I won't let him! Of course, because of the whole 'picc line' issue as previously mentioned here, the last thing he wants to do is go to the VA Hospital as they will most likely admit him. They always do. So I was able to round up 4 1/2 days worth of an antibiotic that I'd saved from awhile back (Doxycycline - I couldn't take the full course as it made me violently ill and we're some of those really BAD people who hang onto antibiotics).

He just woke up from his nap a few moments ago and I asked him how his jaw was feeling and he said that already it wasn't as intense. He took his last dose of morphine around 6am this morning so I was expecting him to be in more pain as his medication level diminished but he's in LESS pain! Yay!! That particular antibiotic is very potent and it sounds like it's already working! Praise God!! I'm going to try to keep him in his chair today for the most part though so his body can rest and fight this infection. As bummed as I was to miss church this morning (which is also making me miss my dear friend Elaine *sniff*) I know that this is too important to mess around with. We'll just have a private, family service here today instead.

2009-11-27T09:41:00.000-08:00

We had a wonderful Thanksgiving with our extended family (on James' side). As the afternoon began to progress into the evening, James mentioned that his calcium level was dropping a bit too low. Normally when that happens, he would take quite a few Calcium-enriched Tums as they metabolize the quickest and then he'd "pop a D" meaning he would bite open one of his liquid-filled Rocaltrol pills. He would then take a few of his regular calcium tablets as well. All of these steps combined would then cause his blood calcium levels to stabilize and his hypocalcemia symptoms to subside. (Thanksgiving + Full Tetany = NO!!!!!) The Chvostek ("Shvah' shtek") check was also a bit alarming so at that point I was anxious to get him home. My mother-in-law had a HUGE Costco-sized bottle of Tums which of course was helpful but we stupidly forgot to bring any of his Rocaltrol (vitamin D) to puncture and take with it. So as quickly as I was able, I loaded the family back into the van and we made the trek back home. Once back home, James immediately "popped a D" and stretched out in his chair for the night. The less he moves the better. That way his body uses up the least amount of calcium in his blood as blood calcium is required for the muscles to move. (which is why when there is a lack of calcium in the blood tetany, or muscle spasms and eventual paralysis, occurs) As usual, it took about 4 hours or so for him to fully stabilize but as of this morning he is doing just fine. I know all of this information can seem a bit confusing but it's really just another "normal" for us. A way of life that we're very used to after almost 10 years of going through it. Sometimes it feels a little like Russian Roulette though. Take for instance last night when I had to choose to drive the complete OPPOSITE direction of the hospital (40 minutes in the opposite direction) in order to get James to his medication which would HOPEFULLY resolve his tetany issues in time. Do we stay close to the hospital and hope he stabilizes without his Rocaltrol or go home and hope he gets the Rocaltrol in time??? *sigh* I would be lying if I said I don't go through my whiny "life isn't fair" moments. I hate this. I really hate thinking about all of the times I've almost lost my husband to the side issues of his cancer and not the cancer itself. Believe me, I KNOW I've been blessed beyond measure as well. He died in my arms almost exactly 9 years ago but God gave him back to me and we've had such a wonderful life together. I have to stop focusing on the "what ifs" and whether or not I'll be too late to help him this time or the next time. I CAN say however that I'm going to double and triple check to make sure we always have an extra supply of his meds wherever we go. Last night's lapse in judgment at least came with a good lesson, right? :) God has given us today. Today is beautiful. Today is another gift, another day I get to spend with my beloved. My heart. My first and only love. He is the best thing that ever happened to me and I can't spend ENOUGH time with him! 60 years together wouldn't even scratch the surface of the time I want to spend with him. But today, I have TODAY. I'm going to spend it with my sweetheart and thank my God for giving us yet another TODAY. :)

I hope you all had a wonderful Thanksgiving!!

2009-11-04T16:55:00.000-08:00

My beloved is home, home, HOME!!!!!! Praise be to God!!! :)

2009-11-03T12:32:00.001-08:00

I went in to visit my sweetie again this morning. He was still in the ICU at the time although they moved him to a regular ward earlier this afternoon so they can discharge him tomorrow morning! Already!! I'm SO excited!! I can't WAIT to bring him home!!!!!

On a brief side note, his doctor decided (in spite of James and I protesting) to keep James on a continuous calcium IV drip all day yesterday. Sure enough, James' blood calcium level began to go too high, although not dangerously so. The result was a 'calcium headache' upon waking (think of your worst migraine times 10). He had the nurse contact the doctor who reluctantly gave permission for the IV calcium drip to be discontinued. This particular doctor can be a bit stinky at times. Oh well, at least he's letting my baby come home in the morning! :)

2009-11-02T11:59:00.001-08:00

I spoke with James last night around 1:00am and went in to visit him this morning. Currently he's in the ICU on a 12-lead (heart monitor) as he usually is for the first few days. When his blood calcium level gets too low it messes with the rest of his body chemistry, including his heart. His heart is becoming overtaxed from the calcium fluctuations over the past 9+ years. So far there doesn't seem to be any permanent damage and I pray it stays that way but his sitting heart rate continues to be dangerously high.

As far as the tetany he was experiencing last night, they have him on a calcium drip through his IV. He was fighting me a little regarding going into the hospital as he was terrified the doctor was going to have to put in a main line because of the years of IV calcium which has hardened his veins making it extremely difficult to insert a standard IV. Jamie and I prayed on the way home from the hospital (after we dropped him off) last night that God would send someone who could successfully insert a standard IV so he wouldn't have to go the main line route. He said the first ER nurse tried a few times and couldn't get a cooperative vein but a second nurse came in and was able to successfully insert the IV. Praise Jesus!! I noticed this morning that his left wrist (the IV site) is bandaged up pretty good to prevent it from bending at the point where the IV goes in. I know a lot of you probably already know about a lot of the medical terms, etc. but for those of you who don't, I'm just trying to help a bit.

When I saw him this morning, he looked a thousand times better than he did last night. I expect him to be in the hospital for the better part of the week at least. Our pastor called this morning to check on the children and I and let me know that he would also be going in to visit James today. I'll continue to update as needed.

2009-11-01T19:03:00.000-08:00

I just dropped my beloved off at the hospital. Same old same old. We've all been battling the "Whine" flu and because of James' health issues, it's hit him rather hard. (heart issues and partial tetany) I'll update as I get news. *sigh* Gotta run...have 5 little ones to get up at the crack of dawn and off to school.

2009-07-23T01:38:00.000-07:00

Thank you, all for your kind words and comments. Your prayers also are felt by us. I apologize for the tone of that last post. I was a bit "whiny" that day, wasn't I?? ;-) Anyway, James has been able to stay out of the hospital for a while now (a week+!) which is always encouraging news. Between the M.E.N.1/cancer issues and now the tachycardia issues along with the fairly recent medication stabilization problems, it sometimes seems he is IN the hospital more than OUT. Regardless of having to stay put in his chair all day I am really enjoying just having him HERE. I can always feel his presence near me wherever I might happen to be in the house rather than so far away from him when he's admitted. That little "In sickness and in health" clause within traditional wedding vows never really seems like too big of a deal when you're just dealing with colds/flu or even the occasional surgery. But when your spouse, lover, best friend, etc. is continually wracked with pain, discouraged and frightened, needing you to care for and even "baby" them now more than ever, it takes on a whole new meaning! That's where faith in God comes in! He wants nothing more than to strengthen our resolve and faith in Him, continuously renewing us and teaching us lessons in patience, faith, etc. He is always so close even when we become so discouraged and wants, NEEDS us to cry out to Him. I seem to do that quite a lot and do you know what? He's never failed to answer me. Sometimes I don't care too much for the answer but it and HE is always there.

2009-07-12T17:24:00.000-07:00

Today was a bad day. James' heart medication keeps him in his chair sleeping 24/7 and as you can imagine with a busy household, I am rather at my wit's end by the end of the day. I've been crying for the past hour or so. The cancer hasn't stolen him from me yet and his heart may not have given up yet but at times I already feel like a widow. I guess that makes me a really bad person.

2009-05-16T10:08:00.001-07:00

James called me at 6:19 this morning from the hospital. He'd forgotten that today is Saturday and I wasn't up early getting the children ready for school. So much for sleeping in, right?? It was good to hear his voice though. I miss him so much. He mentioned that the results from his two scans two days ago didn't show anything significant so that's pretty good news! The scans weren't as clear as we would have liked (i.e. a fine-cut CT scan) so that a lot more detail would show up but we're still fairly satisfied with the news! Still no results from yesterday's scan though. He's hoping to be released from the hospital today, as am I obviously! The doctor mentioned that his blood calcium level (which was at a 6 when he arrived at the emergency room for those of you who understand that sort of thing...and how it was amazing he was still alive at that point with his level so low!!!) was still dragging a little on the low side as of last night. James mentioned that it wouldn't be and would have actually been just fine had the doctor not disconnected the IV that was GIVING HIM CALCIUM the day before yesterday!!! DUH?!? It's usually prudent to wait until the patient's blood chemistry is STABLE before removing his intravenious meds which were currently being used to fix said problem!!!! I wish doctors knew more about my husband's illness. At times James and I have to explain a lot of the aspects of the disease to the doctors rather than the other way around!

2007-05-30T06:06:00.000-07:00

James is back up at the VA Hospital in Missouri again. Ok. Rewind that. A lot. It's been a year since I've posted here and so much has happened to us! First and foremost (as those of you who read my main journal already know) we bought our first home (in Arkansas) 2,500 miles away from where we were currently living (California). So now instead of going to San Francisco for treatment, James is going to Poplar Bluff, Missouri. His Oncology care is up in St. Louis (Missouri) though. That in and of itself presents some problems financially for us as it's so far away and getting up there and paying for room and board as well as food, etc. We know that the Lord has always provided for our needs according to His will and He won't fail us now!

So anyway, James was transported up there from our local hospital via ambulance early this morning around 4:30 am CST. Early this year he contracted a nasty virus called Clostridium. It's a very nasty Botulism-related virus. He's back in now for the same thing. I just spoke with him and he said when the doctor came in to see him (same DR he had the last time - very helpful) he said that the Clostridium virus can seem to go away completely but in fact it's really lying dormant elsewhere in the body. So now it's back and he's on round two of antibiotics. The doctor seems to think that James is just more prone to things like this because of the shape his body is in. The biggest threat at this point is dehydration so he's being flushed with IV fluids to remedy that.

As for treatments of any kind, everything's on hold for now. I hate that it is. I hate to think of the cancer that's been growing or spreading since November of 2005. It's times like these when I have to almost minute-by-minute put my faith and control into God's capable hands.

2006-03-11T19:25:00.000-08:00

James is home safe and sound from a week of appointments in San Francisco. The results of the CT scan showed that the tumors in his lungs (and most likely the ones in his neck also) have indeed grown and that we can go ahead and begin radiation. So he will be going back to San Francisco on the 27th of March to begin two weeks of his final lifetime-allowed radiation threatment. Beyond this, if the tumors grow back as they have twice already we will be left without any other options save surgery. The amount and placement of the tumors in his lungs would make it extremely difficult for surgery to take place. So we're praying for a miracle. This radiation treatment HAS to work! I know that God can still perform miracles and I believe one can happen where James is concerned. Dr. S did mention that even if all else fails it would still take a year or two for the cancer to take his life. God's will only be done.

2006-02-28T10:54:00.000-08:00

He'll be in San Francisco next week for a number of various appointments. Arthritis, Optometry (a mixture of the meds he's on can cause eye problems), Pulmonology (lung), Oncology, the whole gamut. I believe they'll be making an appointment for his next round of radioactive iodine. They're still waiting for the cancer in his lungs to grow to an acceptable, treatable level.

2006-01-30T12:04:00.000-08:00

James went back to S.F. a few weeks ago to speak with the Cardiologist, Pulmonologist and Endocrinologist. They determined that the tumors in James's lungs are too small to treat. They need to grow more before they can do anything, most likely his final dose of radioactive iodine as metastatic thyroid cancer doesn't respond to chemo. Once they give him the radiation, he will no longer produce saliva on his own as what's left of his salivary glands will be destroyed (burned) by the radiation. So now we just wait for the tumors to grow. That's not a very comforting thought to be sure but we don't really have a choice at this point.

2005-12-20T14:09:00.000-08:00

We're having quite a bit of rain today. We had a few errands to run this morning as a family and James had a hard time getting around. He uses a cane all the time but it only aids him it doesn't take his pain away. He's doing alright though and trying to stay cheerful for the sake of the children. I can see how much he hurts though and it pains my heart so to see him suffer. I wish there was something I could do for him to take away his pain. If only I could take all of his discomfort upon me for a day. Just to give him a break. I would do it as often as I could. Please continue to keep my beloved in your prayers.

2005-12-14T21:03:00.000-08:00

Please be in prayer for James. He's having some setbacks. The healing from his lung surgery is so very slow. He's in a great deal of pain and we would really covet your prayers right now. Thank you so much.

2005-11-29T11:21:00.000-08:00

Tomorrow, James will be going back to a Cardio-Thoracic doctor in Sacramento to discuss some complications he's experiencing from his surgery. He's still in quite a bit of pain among other odd things. Please be in prayer for him if you have a moment.

2005-11-25T23:28:00.000-08:00

James is still recovering well. I keep the humidifier going all day in the living room next to his big chair and all night next to his side of the bed. He's still pretty sore but all in all is doing a bit better each day.

Our church has been such a tremendous blessing! For about the past month and a half or so a family from our church has been bringing over a meal every other night. What a huge load off my shoulders!! There have been people bringing over gallons of milk almost daily, boxes upon boxes of diapers in almost every size (we still have four children in diapers at night and two during the day so we go through them rather quickly!) and so many other household and sundry items! For thanksgiving, a local business put together a HUGE, decorated basket full to the brim with items for a thanksgiving feast! Oh yes, and a turkey! (which, by the way will be turned into post-thanksgiving soup tomorrow!) Another family from church will be buying a Christmas tree for us and still others want to help out with Christmas gifts for the children. I am amazed at the blessings we've been given! I pray that each of you who have prayed, sacrificed and encouraged us will be blessed tenfold. Thank you, all so very much. :-)

2005-11-23T12:13:00.000-08:00

A few questions answered:
(Tamara) ~ "By lifetime limit, does that mean he'll never be able to receive radiation in the future?"
No, he won't. At this point giving him more radiation will only add to his problems rather than solve them. The last two treatments almost completely burned out his salivary glands and Dr. S. suspects this next dose will do just that. Also, beyond this dose of radiation, they will have to surgically remove anything else that comes back. All of his radiation therapy will in fact increase his odds of developing other types of cancer in the future but we don't have a choice. It will also be difficult to detect whether or not this treatment even works. We still don't know what the other masses are (yet?) either or how to treat them.

(Tamara) ~ "How long was he a firefighter? Not that it makes a difference. One time exposure is enough."
He was a firefighter for 6 years and was exposed to some pretty nasty stuff. People have the false idea that all of the protective gear that firefighters wear is 100% (or close to it) effective but that simply isn't the case unfortunately.

(Lori) ~ "This is good news right??"
Yes, Lymphoma or metastisized Thyroid (not papillary) cancer would have been a lot worse and much harder to treat. :)

(Misty) ~ "You'd think after all that radiation he'd be sterile!:) The LORD is gracious, isn't he??"

Oh that was too funny!! Yes, you'd think so! ;)

(Morito) ~ "Do you know the story of Lance Armstrong?"
Yes, we do. Very well in fact. We have been quite encouraged by his story. He and my husband are the exact same age too! :)

If any of you have anymore questions, just throw 'em my way! :) :)

2005-11-21T12:49:00.000-08:00

It seems James has metastatic (metastisized) papillary thyroid cancer in his lungs. So he will undergo yet another round (his lifetime limit) of radiation which will Lord-willing take care of it. There are a few other cells they can't seem to identify. They were tested for TB, Lymphoma and other toxins but so far everything is negative. He must have been exposed to something weird while he was a firefighter. That's my best guess.

2005-11-20T09:22:00.000-08:00

We're safely home and James is recovering well. He's parked in his recliner and is back in command of the Castleberry Ship. It's SO good to have him back home! Thank you all so much for your prayers!! We still haven't heard from Pathology yet but I'll update you all when we do.

May God be with you all,
James and Rebekah (and family!)

2005-11-14T22:01:00.000-08:00

Praise Jesus!! The surgery is over and James is in the Intensive Care Unit recovering quite well! The surgery lasted about 4 hours and they were able to extract three 'nodules' from his right lung without having to go in through his sternum! The pathology results from those will take about a week. PLEASE be praying that it's NOT matastisized thyroid cancer! That would be by far the most difficult (virtually impossible) to treat. He has a chest tube, catheter, an epidural and a bizillion various wires hooked up to him most of which will be taken out tomorrow with the exception of the epidural and chest tube. Those will remain in for another day or two. He's in great spirits and I even brought him chocolate ice cream, whipped cream (he ate all of it!) Oreos, milk, and peppermint patties!

Thank you all so very, very much for your faithful prayers!! I will update again tomorrow evening.

2005-11-13T15:52:00.000-08:00

We're here safe and sound in San Francisco. The flight was a bit bumpy and I for one was VERY relieved to have both feet planted back down on good ol' Tera Firma! We're in our hotel room waiting for James' family to meet us here within the next few minutes. From here we'll go to the hospital to pick up a bunch of medication for James and then out to dinner.

I was in the Word awhile ago and was reading in the book of Psalms. What a comfort that book is to me! If any of you have some suggestions for Bible reading tomorrow during the surgery (specific verses or passages, etc.) please post them here and I'll write them down in my Bible. I'll post a bit tonight before bed. You won't hear from me after that until after the surgery most likely because we have to be at the hospital at 6:00am tomorrow morning. Your continued prayers are still greatly coveted.

2005-11-12T19:32:00.000-08:00

We're flying out tomorrow morning and will be in San Francisco by late morning. Jacob, Sarah and Leah will be with us. Jamie and Hannah will be with friends from church. James' family (mom, brother and wife and sister) will also be flying into S.F. tomorrow. James' surgery is scheduled for 7:00am Monday morning. We check in at 6:00am. Please check back here Monday afternoon for a post-surgery update.

2005-11-08T22:50:00.000-08:00

It's amazing how precious the little moments are when faced with a loved one going through a horrible, life-threatening and complex disease. The little things are much more meaningful. The stolen moments throughout the day mean so much.

Lord, help me to never take my loved ones for granted. Teach me how to be a servant, to put my family always first before myself. To never have any regrets when this life is done. Thank you so much, Lord for my husband. Unknown to me for the first 20 years of my life yet You were continually shaping both of us for each other all that time. As a child I remember praying for the man I would one day marry. So often I would do that. Those prayers were for James. I didn't even know him yet. But You knew. You fastened him together in his mama's womb. Before she even knew of him you did. You knit every fiber of his being together. You know him better than even I, his best "earthly" friend knows him. You created him. You love him more than I ever could imagine loving him. Nothing is too great for You. You still heal. You still perform miracles every day. I don't know the plans You have for James' life, what the outcome of this disease will ultimately be. But You do. What a blessed thought. I'm not afraid. If you choose to call my husband Home, precious Father, I will grieve. But I won't dispair. You will hold me as a small child and care for me. My children will never be Fatherless. You are always with me, comforting and protecting me. Thank You for your divinity and providence. Your will be done. My earnest prayer is that I may grow old and gray with the lover of my youth. My greatest and dearest friend. The only one who is as much a part of my being as one of my own limbs. To watch our children grow. To see him walk our daughters down the aisle on their wedding days...Lord, you know the greatest desires of my heart. Please, if it's your will, bring my beloved James through this surgery and through this disease victoriously. May he be a living testament to your greatness and Your glory. May You only be glorified in all of this. May your mighty name be praised in all that I do and say.
Your daughter,
Rebekah

2005-11-05T02:44:00.000-08:00

Everything went just fine. He had some routine x rays done. The ones of his lungs came up clear which is good. That means the tumors haven't grown large enough to be picked up on it. Also his EKG went well. He spoke with the surgeon and anesthesiologist too and felt a lot better about the surgery after that. Basically they'll be making a 3 inch incision into his right upper lung under his armpit. Then they'll deflate the lung and insert a camera into it. If they can spot the tumor they're after they will 'grab' it with an instument that looks a lot like an eyelash curler but with scissors on the end. If they can't see the tumor, they will then have to open his chest cavity and get to it that way. So pray that they see it the first time! After they get the tumor they will put five titanium staples into his lung to keep it closed. He'll have those for life. Then they'll reinflate the lung, put a chest tube in to help it drain and he should be out of the hospital within a few (3-4) days barring any complications.
Also, because James has malignant hyperthermia (he's allergic to general anesthesia) they will purge the anesthesia equipment for 24 hours before his surgery (force oxygen through it) to rid it of any traces of the usual anesthesia. They will be using a different anesthesia on him during the surgery and have some sort of antedote on hand should there be any problems like he had in 2000.

2005-11-02T21:12:00.000-08:00

James is in San Francisco. He left earlier this evening and will be back sometime late tomorrow evening. Just a routine pre-op appointment. A nice man from church is driving him down, paying for a motel and driving him back. Praise Jesus.

2005-10-25T12:37:00.000-07:00

We have a date scheduled for James' lung surgery. Monday, November 14th. We'll be flying out there on Sunday afternoon and should be home (Lord-willing) by the following Saturday. Please, please be in prayer for James. He's been having a lot of anxiety over this. His entire family will be flying out for it.

2005-10-14T22:14:00.000-07:00

Hi, Lynn! You asked...I'm answering... ;-)
"...why are they removing one tumor from the lung, as opposed to more than one?"

In answer to your question, Lynn the doctors are only removing one tumor because of the invasiveness of the surgery required. There are tumors on both of James' lungs, top to bottom and so to remove them all surgically would be next to impossible and extremely dangerous. The reason for removing the tumor is not for the tumor's sake but for a biopsy. Once they test the tissue/cells of the tumor they'll know what type of cancer we're dealing with and how to go about treating it. Initially we were simply dealing with papillary thyroid cancer. Apparently when the thyroid and parathyroids were removed, some of the cancerous cells were sloughed off and traveled throughout the bloodstream to other parts of James' body where they mutated and became another sort of cancer. Dr. B. (from Denver) thinks James could possibly have testicular cancer and that's what traveled to his lungs. The testicular cancer theory comes from a few tests given to James about 6 months or so ago. I hope that's about as clear as mud for ya. ;-) It just goes to show how confused I can get about all of this at times!

2005-10-11T19:18:00.000-07:00

Unbelievably, even on a blog with as sensitive a subject as this, uncaring people would rather leave their spam (advertisements) with the pretense of 'having read' what I've written. Shameful. So I've added a spamguard to my comments. I know it's a jolly pain but when you leave a comment from now on, you'll have to type in a word exactly as you see it. That prevents spammers from assaulting my comments section. I went to check my comments today from my latest post and was excited to see that there were 8 comments left for me to read! I was a bit saddened to read that only two of them were actual comments from friends and concerned ones. Good grief. My thanks to those of you who have genuinely responded though. I hope having the extra added security doesn't disuade anyone from posting!

2005-10-10T11:13:00.000-07:00

My webpage server has been down for almost a week now and I'm sure you're wondering what on earth is going on. The three 'Ologists' conferred and decided the best course of action would be to pull one of the tumors from James' lungs. The one on the upper, right lobe to be exact. So in about 2 weeks (around the 24th) James will be having surgery to do just that. We still don't have an exact date yet but I'll let you know when we do. During the surgery they will collapse the right lung and remove the tumor. They're really going to try to go in between his ribs so they won't have to open the chest area. Yuck. Then they will reinflate the lung and set in a chest tube for awhile to drain the area. He'll be inpatient for a few days and then if all goes smoothly, Lord-willing he'll go home at that time. As usual, I'll keep you all posted.

2005-10-03T11:10:00.000-07:00

I just spoke with a rep from the Oakland Raiders and we're going out to Alameda to meet the team and go on a tour of their facility at 4:00 pm!! Perfect timing too, James is on his way back from the hospital right now!

We're in San Francisco. (I'm on James' laptop) The flight over yesterday went just fine. We flew over in an 8-seater, twin engine Cessna. Sarah sat in the middle row next to James and I sat in the back nursing Leah the entire flight. We have some pictures of the plane and even a few James took during our flight!

James is at the hospital right now. I'm still at the hotel with the babies. He said they tried to get a needle biopsy of his neck but although they dug around in there for awhile, they couldn't get any 'readable' tissue. Very frustrating. He's meeting with his new Oncologist right now. To top it all off, he thinks he might have Pneumonia. I think he does too. He was up all night coughing and has had about 3 asthma attacks since we left the house yesterday. I hope not, but if he does at least he can be treated for it while he's here with his Pulmonologist! All those 'ologists' sure can get confusing!!

I'll keep you all posted.

2005-09-30T11:09:00.000-07:00

I'm amazed at the kindness and generosity of "virtual" strangers. (pun intended) You are amazing. Your prayers, encouragement, all of your help has been so very humbling. James read an email from one of you last night that actually brought him to tears. That's a rare sight around here. I thank God every day for you. What a blessing you all have been to our family.

It has been suggested that we set up some sort of structured fund for our family. We'll try to get to our bank today to discuss it. James also has to get down into the local VA clinic for an appointment and that always takes a good chunk out of our day so we'll see.

On a last, side note, I contacted the Oakland Raiders and spoke with a representative of the team. James has been an avid Raiders fan since his childhood. The man I spoke with is going to meet up with us early next week while we're in the bay area and take James and I on a tour of their facility. He'll get to meet some of the players and see where they train! James is SO excited!!!!!

2005-09-29T11:08:00.000-07:00

James has two biopsies next week. One of the lung tumors and one of the neck tumors. Dr. S. wants to know what we're up against. (what types of cancer so we know how to treat it all) I'll get to be with him when it all happens. This time, Angel Flights West will be flying James, myself and little Leah out to San Francisco late Sunday afternoon free of charge. What a blessing!!! Not only am I going to be able to be with him but our transportation is free! (and we won't be running our big, old van into the ground!) They'll be flying us back into Paradise (the town just below us) Wednesday evening. We're still fine-tuning our accomodations once we're there but the social worker at the VA hospital said not to worry about it, she'll arrange something. Some of the families at our church have agreed to watch our four older children while we're gone. Jacob will be with an older woman who used to be a schoolteacher years ago. He's going to love that! Jamie, Hannah and Sarah will be with another family who have four and six year olds also. God is really paving the way for James and I to go to S.F.

2005-09-26T11:07:00.000-07:00

Dr. S. called today regarding the results of James' abdominal spiral CT scan. The good news...his pancreas is completely clear. The bad news...totally unrelated to his disease, he has either lung cancer or lymphoma. There are around ten tumors on both lungs combined. We're in shock. I honestly don't think it's fully hit me yet. This is just so unexpected. Our local paper is going to do a story on our family in the hopes of doing some fundraisers for our family so James can afford all the upcoming trips to S.F. Dr. S. is referring him to an Oncologist as well.

2005-09-23T11:06:00.001-07:00

Update #2: ultrasound results: there are three cancerous nodules in the thyroid area. One on the left, one on the right and one in the middle. Most likely surgery and radiation at a later date. ( a few months??) He's being prepped for the CT of his pancreas now.

2005-09-23T11:06:00.000-07:00

UPDATE: Well, according to the thyroglobulin test result, there is still cancerous thyroid tissue present somewhere in James' body. It was too small to pick up on the scan apparently. James' doctor wants to wait on the radiation though just in case the test is less than acurate, which it has been in the past with some patients. Since James' salivary glands have almost been completely burned up from all of the radiation he's had she wants to wait until it's absolutely necessary and she knows what we're up against before subjecting him to it again. That makes us nervous as we don't know where the cancer is or if it could matastisize. (sp?) Please continue to keep us in your prayers that when the test is redone in about 6 months there will be no evidence of thyroglobulin present in James' body. He's in having the spiral CT of his pancreas and an ultrasound of various organs right now. He'll be home late tonight. I miss him and am SO thankful he's coming home. I'll let you know what the results of the two scans are later today as well as what his Urologist says regarding his prostate issues.

2005-09-23T11:05:00.000-07:00

I still haven't heard back from him today yet but will update when I do.

2005-09-22T11:04:00.000-07:00

Today's the day! James had his final full-body scan today and I should have a verdict from him around 4:30 PST. PRAY! PRAY! PRAY! His spiral CT (pancreas) is tomorrow morning at 9:15 am. PST...UPDATE!!! James' scans came back clear!!!!! Praise Jesus!!! So now we're just waiting for the results of the thyroglobulin test he had on Monday. The results were supposed to be in by today but someone in the lab goofed and didn't get the test out on time. So he'll know for sure by tomorrow morning, around 8:00 am. They don't expect his level to be elevated though. Regardless, we'll know for sure tomorrow morning if he'll be home tomorrow night. Looks like it! Even if something shows up on his spiral CT (pancreas) tomorrow they would schedule treatment for that and he would come back home anyway. So there you have it! Keep praying!!

2005-09-20T11:03:00.000-07:00

James will be having the first of his scans today. He'll have the second scans and the spiral CT of his pancreas tomorrow.
9-21-05...he had scan #2 today. He won't know the results of it until tomorrow though. He did say there was nothing obvious on it though, praise Jesus! I'll let you know...thank you all so much for your encouragement and prayers!

2005-09-19T11:03:00.000-07:00

I just spoke with James a bit ago. He arrived safe and sound in San Francisco around 1:15 this morning. He's going in now to drink the radioactive liquid they always give him before they start his scans. I believe they're starting the actual scans tomorrow though in addition to the sectional CT scan of his pancreas they were already planning on doing. I'll continue to keep you posted as I hear from him.

2005-05-22T11:00:00.000-07:00

We arrived home late Wednesday evening. The trip itself was fairly uneventful but the health-aspect of it all is a bit overwhelming to say the least. The past few days things have been in an upheaval emotionally around here. James had his podiatry appointment and the whole gamut of blood tests that he usually has when he goes down there. They also made plastic casts of the undersides of his feet to use to make shoe inserts for him to hopefully alleviate a lot of the pain in his feet (pseudo-gout) when he walks. He will be going back later this week (Friday) to have the tumor in his left foot removed. They aren't going to bother with a biopsy given his medical history and the rate of tumor growth he's had in the past. So he'll most likely be leaving here on Thursday evening (alone due to finances) via the VA shuttle and staying through most of next week as well for a number of other tests his doctor ( Dr S., the Endocrinologist) wants to perform. We were frustrated to find out through a letter (which arrived the day after we came home) from his Endocrinologist that his pancreatic polypeptide (blood) levels were rather high TWO YEARS AGO (!!!) and of course are still off the charts now. We were never informed of this. We had no idea. For two years, we had no idea!! So he could have had tumor growth on his pancreas for the past two years and we never had a clue. ?? So needless to say we're extremely stressed about this. He's also been having some prostate issues during the past few months (also an endocrine gland) that need to be addressed. The thought of my 33 year old hubby having to deal with a prostate tumor(s) on top of a pancreatic tumor(s) on top of the foot tumor in addition to whatever else....just thinking about it makes my head swim. Sometimes it's all so overwhelming. I can't imagine my life without him. I know that by God's grace the children and I would be alright and I accept God's will whatever it is. I just earnestly hope and pray I am blessed to grow old with the love of my life. Will update as I know more. Please pray for James physically and for our family emotionally. Thank you, all.

2005-05-15T10:17:00.000-07:00

Update from my last post? He still hasn't gone in for any scanning yet. His Endocrinologist will try to get him in this next week or soon thereafter for a complete body scan to check for tumor growth. His local doctor suspects that what are growing on his leg and forehead are Lipomas. They can be removed rather quickly and easily. He does however suspect that the hard "ball" knot on the bottom of James' left foot is a tumor. So Dr. S. in San Francisco is going to have him come in for a biopsy while he has his scans.
Calcium-wise he's been doing very well and staying steady. We're positive his re-implanted parathyroid tissue is working to some degree at the very least. Praise the Lord!! He rarely has to take his calicium or vitamin D anymore! Only every few days. He does have trouble remembering to take his thyroid hormone which takes it's toll on him and I'm trying my best to remind him as often as I can. So that's about it for now. I'll let you know how his upcoming scans/appointments go. Oh, and please be in prayer for the Pseudogout he's been having in his hips and feet. It's especially bad during the weather (pressure) changes.

2004-10-06T16:22:00.000-07:00

James has been having intestinal issues for the past few months straight now. He's been on anti-diarrhea medication every 3rd day for weeks. I'm concerned. He doesn't talk a whole lot about it so as not to frighten me I'm sure but I know he's concerned too. The doctors suspect he could have a tumor on his pancreas. He has a few of the classic signs of it. I honestly can't think about the "what ifs" right now. He's in school full time and is unable to get into the hospital in San Francisco to be checked out. Mabe over winter break from school. Please be in prayer that whatever this is will either resolve itself or at least not spread while he's waiting to be seen. He also has yet to have the lump on his forehead checked out.

2004-05-24T16:21:00.000-07:00

Good news and not-so-good news:
The good news is that James' PTH (parathyroid hormone) level is at 5!!! His reimplanted parathyroid is WORKING!!!! It was less than 1 a few years ago which meant it was too low to measure. Not any more!!! Praise the LORD!!!!!
The not-so-good news is that the doctor said the lump on James' forehead is quite unusual and wants to perform a needle biopsy. So James will be getting in touch with Dr. S in San Francisco regarding that.

2004-05-23T16:21:00.000-07:00

James will be going in to the VA Clinic tomorrow to have a growth on his forehead looked at. We've needed to watch for this as it could be a sign of a pituitary tumor. Will update when we know something...

2004-03-05T16:20:00.000-08:00

James just called me from work. He'd left all his medication at home yesterday (his job wouldn't let him go home to get his LIFE-SUSTAINING medication without a lot of grief so he didn't get it). When he arrived home from work, he was REALLY low on his calcium. So he "popped a D" (broke a liquid vitamin D capsule with his teeth for a faster effect), took 5 calcium pills and swallowed some of his liquid (emergency) calcium. That was the only medication he took yesterday. None today so far. Anyway he just called to let me know his calcium is now WAY too high and he has another calcium headache. Just think of the worst migrane you've ever had?? This is 10 times worse. He'll probably be going into the hospital for some IV fluids to dilute the amount of calcium in his system. Then there's the threat of his calcium level going too low. For those of you who have kept up with my journal the past 4 years you know how frustrating this gets to be.

He also spoke with a few of his doctors out in San Francisco. They're starting to get things scheduled for his yearly scans, etc. Please start to be in prayer about all this. I hate this time of year.

2004-02-17T16:19:00.000-08:00

Not a whole lot going on with James right now. He's had a few tetany scares during the past year but not much else, praise the Lord! We're creeping up on the yearly scans once again. The dreaded scans. No particular date set yet but will update when there is. James has been really bad about having his regular blood draws (at least once a week) but has been trying to get in more often to do so. It's hard when he works 12+ hours a day and the Veterans Administration's Lab isn't open on Saturdays. *sigh* He also has to keep a good eye on his creatnine levels (kidney function). He takes so much calcium that it's hard on his kidneys and he has frequent kidney stones. Ouch. Sooo that's about it for now.

2003-06-18T16:19:00.000-07:00

Good gracious! I thought I'd updated here!! I guess I'd just updated my blog! Anyway...James is CANCER-FREE!!!! No more cancer!!! Because his disease is genetic, he'll still have to go in once a year for scans to monitor any new tumor growth if any is present but for now, for this year anyway, he's cancer free! Praise God!! No treatments, no radiation!!!

2003-06-06T16:18:00.000-07:00

My baby's coming home tonight!! I can't wait to see him!! He's had an MRI and two out of three scans so far and nothing has shown up!!! Praise God!!! The scans he has this morning will be the most critical so if these come back negative as well, we can safely assume my hubby is cancer free!! Because this is a genetic disease, he will still have to go in once a year for scans to make sure there isn't any more tumor growth but what a blessing at least a year of "no cancer" would be!!! Hooray!!! Thank you all for your prayers! When I hear back from him today after his scans, I'll post an update here!

2003-06-04T16:09:00.000-07:00

UPDATE:
4:15 pm. I just received a phone call from James. He had the MRI this morning but hasn't received any of the results back from that one yet. He then had his radioactive-iodine injection and with a few hours until his scan decided to go on the bus around the city a bit. About 3 miles or so from the VA Hospital he started going into tetany again. He immediately got off the bus which at this point was very close to Kaiser Hospital, (thank God!) He was in full tetany by the time he was seen by the doctor. They gave him 5 amps of calcium gluconate through an injection and he seems to be doing alright now. How frustrating that I wasn't able to be there with him!! How frightening that must have been for him! My poor baby! He's on his way back to the VA Hospital to have his nuclear scan done now. Dr G. was kind enough to wait around for him. Please, God after all of this, let his body be free of cancer!

Frustrating news about the "ratings" visit yesterday. As James was getting his luggage, etc into the cab yesterday morning we received a phone call. It was the place where he was to have the visit with the ratings doctor in a few hours. They told him two of their doctors didn't make it in yesterday and that they would have to reschedule. Now for those of you who read my entry from yesterday you know how important this visit was! It took them months to make the appointment in the first place. Well, James freaked out on them. He was angry that they would call a few hours ahead of time when we'd already purchased the train/bus tickets and cab fare just to leave a day early for San Francisco so he could stop in Sacramento for this appointment! Holy cow, people!!! So they assured him they would fit him in and to get there as soon as he could. So he arrives there and they call him in...to see an RN?!? He says to James "Look, I'm not a doctor, I'm only an RN so I can see you if you want but when I submit my findings the VA won't be very happy about the fact that I'm only an RN and will probably reject the report." *acckkk!!!* So James begged them to try to reschedule him on Friday when he's on his way back from the hospital in San Francisco. So hopefully I'll be receiving a phone call from them today to do just that. Or mabe I'll just call and bug them?? We're SO frustrated!! Anyway, this morning at 8:30 he'll have an MRI done. Then he'll go drink that nasty radioactive iodine stuff for his other three scans the first of which is this afternoon. He said they probably won't be able to really see anything on the first scan today because there will be so much iodine uptake in his system it will be hard to find a contrast where they would need to. Hopefully we'll find something out with the MRI though. He's going to call sometime later on today with an update and I'll update here at that time. Even if they don't find anything out yet I'll let you know that too! He'll have his second scan tomorrow and the final one on Friday. Those will be the most important ones. Thank you all for reading this and for your continued prayers.

2003-06-03T09:21:00.000-07:00

James had the second injection of Thyrogen this morning. It's an experimental treatment relating to the scans he's about to have so he's getting paid for it. Not too bad I guess. He is, as I type, on his way down to Sacramento to see a VA "ratings" doctor out at Mc. Clellan AFB. This is a big day for us in that the doctor will "rate" James' M.E.N.1 (and subsequently the thyroid cancer, tetany, etc.) as well as his loss of taste and smell due to a nasal surgery he had while still in the Marine Corps. Because the M.E.N.1 was present (genetic) while he was in the service and there are records that he asked to be tested for it during that time (which he wasn't) he has already been approved a ratings upgrade from his current disability status of Service Connected 30%. It's now just a matter of "how much." That's what the doctor will determine today. James brought over 200 pages of medical records from the past four years to show him. They (the military) will then have to not only raise the amount of his monthly pension but also pay us back the difference retroactively for the past three years! (when we first applied in March of 2000) What this means to us is (possibly) a home of our own! Oh, and a car that actually runs! Our van has been broken down for over two months and the cost of a new motor for it is more than the van is worth. Thank God for carpools or James would have a pretty difficult time getting to work! So as you can see, this is a very important day for us. The VA counselor James spoke with yesterday said that we should know how much money we'll be receiving within 60 days. So probably around the time the baby is born! I hope so! What a wonderful gift that would be! Tonight he'll be traveling to San Francisco and checking into the hospital. As for the lowered potassium level yesterday, the Endocrinologist on call in S.F. prescribed these HUGE horse-pills (potassium supplements) that he's supposed to take every 6 hours for 24 hours. They'll then draw some more blood at the hospital tomorrow.

2003-06-02T09:21:00.000-07:00

James had the first of two hormone (Thyrogen) injections this morning at the VA Clinic. He will have the second one tomorrow morning before he leaves for San Francisco. He also had some bloodwork done this morning as well. His calcium was normal (for him) at 8.5. It usually averages at 8.7. However, his potassium level was pretty low at 3. So the clinic here is contacting the Endocrinologist on call in San Francisco to see if James needs to be seen in the hospital here briefly before he leaves tomorow or if it can wait until he arrives in San Francisco. His first of three scans will be on Wednesday. I'll update again by then.

2003-05-16T09:18:00.000-07:00

James will go off his thyroid hormone starting next week, then he'll begin his iodine-free diet the week after. He will have his first two hormone injections on Monday, June 2 and Tuesday, June 3 here in town. He'll drive to Sacramento to see a "ratings" doctor regarding his VA pension later in the day on Tuesday, June 2, and then drive to San Francisco that evening and stay overnight. Wednesday morning he'll check into the hospital for an iodine injection and then have three scans. One on Thursday, one on Friday and the last one on Saturday. He should be home late Saturday night. I'll post an update here as soon as I hear anything. Please pray.

*As if my day wasn't going badly enough or something I received a dishonest letter from the "Chemo Angels." I know some of you are familiar with their organization. Here was the letter I sent them first...
From: :: Rebekah Castleberry ::
[mailto:mamacastleberry@yahoo.com]
Sent: Friday, May 16, 2003 2:10 PM
To: admin@chemoangels.com
Subject: Hello...

Hi!
I was just wondering if we were "off" the program now? I haven't heard from anyone in at least 8 months other than the regular email check-ups. Are we going to have another Chemo Angel? Just curious!
God bless,
James & Rebekah Castleberry

Here is the response I received from the Chemo Angels...
As you know, James was removed twice from our program due to non-response to the monthly check-ins. We were not made aware of your address changes, both postal and email, but had to glean the information from your website. Responding to the monthly check-ins is all we require of our recipients. It is a lot of work for the administration when people do not check in, and it isnt fair to the Angels, either. We made an exception for James to begin with, since we do not normally accept thyroid cancer patients into the program, due to the lack of chemo and relative ease of treatment. I understand that James' case is a bit more complicated than that, but we do not feel that we can reinstate him into the program a third time. I hope you can understand that we are all volunteers here, and we have to do what we can to keep the ChemoAngels program running smoothly. We wish you and your family the best of luck in the future, and will keep you on our prayer list.

Sincerely,
Francine Smith
Administrative Director
ChemoAngels
Support for People with Cancer

And finally, my reply...
Francine,
I'm sorry to hear you won't reinstate us. I still check my other address (rebekah@castleberry.net) daily. That is where you send the monthly check-ins. I have never failed to send one in. Never. I was always faithful about that. I just never heard back from anyone so wondered what the point of it was. However, I continued to respond each time. I don't understand why you would say I failed to respond.
As for James merely having "thyroid cancer" and the "relative ease of treatment" he doesn't merely have thyroid cancer. It has spread. You may think this is an "easily treated" type of cancer but it isn't. He has a genetic disease (unlike most of your patients) and will never be free of cancer or tumor growth. He doesn't have the hope (like most of your other patients) of going into remission. He can't go into remission. He will never get over this. I am saddened that you don't feel his case warrants your concern. Also unlike your other patients, our children have a 1 in 2 chance of having the same disease. 1 in 2. If this makes our case "easy" and doesn't allow us a Chemo Angel then we don't want to be a part of your program. It's a shame. You were always there in the beginning to help us. Your angels were always so encouraging to us. I think if they knew how your program was treating us they would be appalled. Don't bother to keep us on your prayer list. We don't want the prayers of someone who is only interested in us to a "degree" and a conditional one at that. I feel also that you were dishonest in saying we didn't return the so-called "monthly" surveys. We always did. It was you who never responded. Shame on you. I have removed your banner from our site.

Rebekah Castleberry~
Proud wife of a cancer warrior

I think it's a shame that they refer to themselves as "Support for People with Cancer." The angels are, they always have been. The administration apparently is not. Or at least only up to a certain point. I truly have a sick feeling in the pit of my stomach that she would be so dishonest with us. Why would they do this?? I guess "beggars can't be choosers" though, right? As if today wasn't going badly enough already, those we depended on for encouragement have all but slapped us in the face. Disgraceful.

2003-05-13T09:17:00.000-07:00

James spoke with Dr. G, the Nuclear Medicine doctor yesterday. We received rather frustrating news from him. He said that James wouldn't be having chemo if anything were to show up on his scans later this month. Apparently, the type of cancer he has doesn't respond to chemo. He's had the maximum amount of radiation already over the last 2 years so even "pinpoint radiation" is out. *sigh* So our only option at this point would be surgery. I'll update again after he has the scans.

2003-04-21T09:16:00.000-07:00

I'm actually making an entry in my journal. I was hoping to go an entire year without having to do so but, alas...here goes. James will be going back to S.F. on May 28th for an appointment with one of his Endocrinologists. Dr S. will be doing a lot of blood work as well as setting up his various, yearly scans. We will be going with him for this. If they find anything on his scans James will have to undergo chemotherapy this time. Over the past 2 years they have given him the maximum dose of radiation they can give him. So we're praying that he's totally tumor/cancer free! Chemo would really suck. Once he's had a round of chemotherapy, the Drs will switch to "pinpoint radiation" and then we're left with surgery. Considering the fact that his disease is genetic and he will always have tumor growth in his body, it can seem really frightening. I have had it with cancer. Every time I even hear the word I feel a knot in my stomach. I just want someone somewhere to find a cure for it. I want to end this chapter of our lives.

2002-12-03T09:51:00.000-08:00

James was a little symptomatic last night. I think it started at work and then when he came home he had to take more emergency calcium. He didn't have to go to the hospital though which was a blessing. His salivary gland is doing much better thanks to the divine hand of God and some handy antibiotics. They've had him on 500 mg. of Keflex for about a month. He'll get twitches every now and then but nothing too serious.
On Sunday, he passed yet another kidney stone. This one we actually saved as his Drs want to run some tests on it. He still has at least one more to pass but Lord willing it will come out soon. The one from Sunday was a little larger in diameter than the tip of a pencil and really sharp! I had no idea kidney stones were so sharp! No wonder they hurt so much when they come out!! I had one when I was about 8 months pregnant with Jacob and I remember it well! James gets them about once or twice a month now because of all the calcium he takes. Hopefully we'll be able to try the new synthetic parathyroid hormone which is being tested. TEST IT ON JAMES PLEASE!!!!! Sorry, I was just begging! ;-) That's about it for now.

2002-11-15T09:51:00.000-08:00

James has been having a lot of problems with what we believe are his salivary glands. Awhile back, he had a stone in one which was caused by calcium carbonate (the medication he takes a lot of daily) built up in it. Over time, each of his glands in succession has been hurting him. Now, the one in his left cheek is excruciatingly painful. Even when he just barely touches the skin on his face there it is almost unbearable. It has been this way for about 2 weeks now and is quite swollen. He has been on vicodin and keflex (antibiotic) but neither have helped. He is finally today going to a local ENT doctor who will Lord-willing be giving him some answers. He will also be having more tests done in San Francisco later this month and an MRI on December 20th in San Francisco. The last time we went down, it was for routine follow-up appointments only and his Endocrinologist and the Endocrine Fellow are both completely stumped as to what is going on with his salivary glands, if that's the case. We are praying that we will get some answers soon. This is very frustrating and tiring for us, for James especially and for me because I have to see the man that I adore in severe pain 24 hours a day and there's nothing I can do about it. *sigh* If we find anything new out today, I'll let you know.

2002-10-22T09:51:00.000-07:00

We are going back down to S.F. on the afternoon of Sunday, November 3rd for a routine check-up as well as a few scans of James' neck area. He has a rather large lump on the right side of his neck and all of his salivary glands are swollen and quite painful. The DRs aren't really sure what's going on so we'll hopefully find out when we go down there.

2002-08-23T09:50:00.000-07:00

We just received the results of James' biopsy. There is no cancer in his stomach!!! I can't believe it!! After everything we've gone through this is just the best news!!! We will still be returning to see the Endocrinologist in a few weeks and I think they'll be running a few more tests to make sure that everything in the neck area is gone from the radiation.

2002-08-08T09:50:00.000-07:00

James has an appointment next Friday (8/16) in San Francisco for the Endoscopy (sp??) where they will sedate him and insert a tube with a camera down his throat into his stomach. They will take a look around and then take a sample of the tissue down there for further testing. I'll let you know what the results are as soon as we get them.

2002-08-07T09:49:00.000-07:00

On Monday morning, James had his follow-up spiral CT scan. It was needed to verify something questionable in or around his stomach. Dr. S (one of the doctors from the San Francisco VA Hospital) called this morning to give us the results of the scan. There is definitely more tumor growth in James' stomach. He will now have to go back down to S.F. (we all will) to have a camera inserted down his throat and into his stomach. They will then take a biopsy of the tissue down there. James is in peices. This is really discouraging.

2002-07-08T09:49:00.000-07:00

James was released from the hospital last night. They kept him a bit longer than originally planned as they were having a tough time getting his calcium level to go up. He's 'home sweet temorary home' now though! (we're moving this weekend!!) The Oncologist had scheduled him for an MRI of his stomach this morning at 9am but because he can't miss any work yet we're going to have to reschedule. The stomach flu is completely gone though and he's doing just fine. Thank you all for your prayers and kind words.

2002-07-06T09:48:00.000-07:00

James was admitted into the hospital again this morning in mild tetany. He caught the same stomach bug we all have only with him it's a lot scarier because his body won't absorb the calcium like it's supposed to. (everything just goes right through him...a.k.a diarrhea) He took an extra vitamin D and 6 full grams of calcium yesterday yet when he was in the emergency room this morning, his calcium (not ionized) was only 7.0 which is extremely low for him. They gave him an amp of calcium gluconate which would normally send his calcium up quite a bit but even now, 4 hours later, he is still experiencing mild tetany-like symptoms. So they've admitted him and will monitor his calcium level and will give him ca. gluconate as needed through IV. They also had him continue to take his calcium/vitamin D by mouth and gave him some Immodium to slow down his digestive tract to see if he could absorb some of it if taken by mouth as preferred. He has also been spiking a fever of 103-104 degrees so their monitoring that as well. I'm on my way back there to see him now. Will update as needed.

2002-05-16T09:48:00.000-07:00

Dr. G called last night (James called him on Monday because he was quite concerned over his total loss of taste from the radiation) and said that from all of the studies he's found, having a complete loss of taste is rare at 10-15% of all cases. He did mention though that it is temporary lasting for around a month or so so James should start getting some of his taste back shortly. He had already lost quite a bit of his taste and smell from two nasal cauterizations he had while still in the Marine Corps. and so to lose the remainder of it has been quite frightening not to mention frustrating! I'll let you know how things progress...
Also, still no news about the upcoming CT Scan. James has job training at his new job for the next 6 weeks and Dr. S said he could safely wait that long to schedule the CT Scan.

2002-05-07T09:44:00.000-07:00

The good news? James is home!!! The not-so-good news? Here are the results from the scan on Sunday. Dr. G told James the cancer has matastisised to his stomach of all places. There was also some radiation uptake in his liver, on his sternum and the left side of his neck. Nothing was mentioned about his left lung so that's a good sign. As for his stomach, James was wondering why his stomach was so upset after the radiation...now we know. I feel that's a good thing as the radiation is 'fighting' the tumor, right?? Dr G will be consulting with James' other Drs and will schedule a CT scan. We'll go down with him for that one. More as soon as I hear anything...

2002-05-04T09:42:00.000-07:00

I'm talking to James on the phone as I type this. He's still in San Francisco and is actually standing on the set of the new Inceredible Hulk movie which will be coming out next year. There are helicopters flying right above his head filming the movie. He has spent the past two days watching them film and has even spoken to some of the crew and actors. He said he has some things to bring home from the set. (posters, scripts, etc.) Some of which the public relations lady gave him yesterday. He's really excited about it. He said there isn't actually a 'Hulk' in person, just a computer animated image which will be added later. He said it's really fascinating. Now I can't wait for the movie to come out!! I suppose even when you get a few lemons in life you can still make a pretty mean lemonade!!
Health wise he's doing pretty good. He does have some permanent damage to his salivary glands from the higher dose of radiation. So he'll have permanent 'cotton mouth' but I believe there is something the doctor can give him for that. His creatnine and CPK levels have been up pretty high but are slowly but surely coming down. He has one last scan tomorrow (which could take up to 8 hours) and then he'll come home tomorrow night!!!

2002-04-30T09:40:00.000-07:00

Forgive me for not updating this sooner but this has been a really rough week for our family physically, emotionally and spriritually. Anyway, James is down in San Franciso for the week. He left Sunday afternoon (after a very tearful goodbye) and will be returning next Sunday night. I can hardly wait to see him!
He had the radioactive iodine yesterday late morning and is currently in isolation. He hates that. He is really depressed. He will have one scan done on Thursday after which he'll be released from the hospital and the second scan on Sunday after which he'll come home!!! After he's released on Thursday, he'll stay in a hotel provided by the American Cancer Society. He's also off his diet Thursday as well so he's going to go to Pier 39 and pig out!! Woo Hoo!!
One of the precious ladies from our church just gave me a chicken casserole for dinner and I told her if it was alright I'd like to freeze it so James can enjoy it with me when he returns in a few days. She laughed and said that was fine. I can't wait until he can eat normal food again! So that's it for now. I'll let you know what (if anything!) they find on his scans. Please pray that this week continues to go by swiftly!!! God is so good and He is always in control. :) We WILL get through this by His ever-present grace.
*Also, for those of you who are wondering, his eye is much better. He removed the patch the next day and although things far away are still a bit blurry, he seems to be recovering just fine. He said he's going to have it looked at this week while he's in the hospital.

2002-04-26T09:39:00.000-07:00

James was injured at work today. A vacuum hose hit him directly on the eyeball of his right eye. It's all bruised and wrapped up and he's wearing a patch. His reflexes are really slow because of his lack of thyroid hormone (or should I say no thyroid hormone whatsoever) and he was unable to close his eye or block the hose in time. The doctor has him on total bedrest with his eyes shut (as much as possible) until tomorrow. The ER doctor wants to recheck his eye in the morning. He's still planning on going down to S.F. Sunday but he'll be unable to drive himself so we're trying to work out a ride situation for him. What's next??? When does it all end??? *sigh*

2002-04-17T09:39:00.000-07:00

James spoke with the Endocrinologist on call last night about the results of his thyrogloblin (blood) test. She said anything over 2 would require treatment. His is 5.5. Thyroglobulin is released by cancerous thyroid tissue. Even though his thyroid is gone there are still thyroid cells and lymph nodes that are cancerous. He's not taking the news very well.

2002-04-16T09:39:00.000-07:00

In addition to the tumor on/in his upper left lung, there are multiple, small tumors peppered behind the center of his chest directly behind his sternum. He will go in on April 29th to start another round of radiation.

2002-04-11T09:38:00.000-07:00

I've heard from James. He's in having the second of three scans today. He'll have the last one tomorrow. He said the doctors haven't told him anything yet as they are waiting until all of the scan results are in (tomorrow) so that they can make a decision using the combined information from all of the scans. Dr. D did say that they will go ahead with the radiation in a few weeks regardless just in case there's something in there that's too small to pick up on a scan. I am in total agreement on this! I'll let you know what the doctors say tomorrow.
~update@4:30 pm~
James just called me and told me they found the tumor in his upper left chest (lung) that was there last year. They can't tell yet whether it's grown or not. I'll let you know...

2002-04-09T19:14:00.000-07:00

James went in yesterday to San Francisco to receive the first of two shots of an experimental thyroid hormone. He received the second one this morning and will be returning tomorrow for the first of his scans.

2002-04-07T16:32:00.000-07:00

This morning, James went into full tetany again. He's on the 'no-iodine' diet again so we thought perhaps his calcium had become too low due to the diet he's on (no dairy, etc.). The E.R. doctor didn't think so as James' calcium was so low. When he was in respiratory arrest in October of 2000, his calcium was at 7.2, the lowest it's ever been. Today his calcium was 6.5!! We have no idea how it got so low!! How crazy is that?!? So we spent the morning in the emergency room again.
It's now 4:45pm and he's packing to go to San Francisco today. He will be taking the first of two doses of an experimental thyroid hormone tomorrow morning. The second dose will be on Tuesday. On Wednesday he will have his radiation scan which will tell the doctors where the tumors are located, how many, etc. Any remaining thyroid tissue will soak up the radioactive iodine and 'glow' on the scan. Then he'll be back home sometime early next week for a week or so before he goes back down to undergo the second round of radiation later this month. So that's the latest from here. I'll give updates here in a few days as I get reports from him.

2002-03-20T16:23:00.000-08:00

James had the scans as planned. Dr D said he can't find anything over 2CM so it looks like James won't need surgery!! The twitching has been happening less and less too which is also a tremendous blessing!

2002-03-06T16:23:00.000-08:00

For 5 days straight (this being the 5th day) James has been experiencing uncontrollable twitching around his left eye. All around it. The upper and lower lids and the brow. It is constant and hasn't stopped at all which has been extremely frustrating to him. I just called the Endocrinologist on call and she wants him to have a blood draw done immediately to see where his calcium is at. So he'll be going in today on his lunch break to have that done. I had mentioned to her that he had just started his Hydrochlorizide (which helps his kidneys process the calcium better thus ensuring the most efficient use of oral calcium) about a week ago and she mentioned that although it could raise his calcium level somewhat it wouldn't raise it to dangerous levels. I figured that wasn't it anyway most likely as his calcium has been as high as 13 before and he's never had this. Sooo I guess we'll find out what's going on either tomorrow (she wants him to come in a day early but we don't know if he'll be able to get time off or not) or Friday when he's in San Francisco.
Another thing I'd like to ask prayer for (if anyone is still reading this journal!!) is for James' emotional well-being. He has been having panic attacks for the past few days which is very unlike him. He is usually such a rock of strength. He was in tears the other night because the twitch in his eye and his dependence on medication to stay alive is a constant reminder that something is wrong with him. He gets terrified at the thought that there is cancer inside of him. He's not always like this but when he is he is in tears. I feel so badly for him and wish I knew what to say to him but I think sometimes just listening to him is enough. I just hate to see him like this. He just wants to KNOW that he'll be here for me and our children. I know God has a plan for all of us and whatever that plan is, I'm ok with it but I'm not the one with cancer either. Well, that's enough for now. Please keep him in your prayers if you think about it.

2002-03-02T16:22:00.000-08:00

As far as the doctors know, there is no bone cancer present at this time. James went down to see Dr. S a few weeks ago and she mentioned that it looks as if the tumors in his neck and chest are still there so he'll be going back down on March 8th to have some MRIs done. That will determine the next course of action but most likely (according to Dr S and Dr. G) he'll be undergoing round 2 of radiation later this spring. I'll let you know what happens at this appointment next Friday. Also it has been determined that the parathyroid implant was not a success. The gland is dead and they will try again in a few months with the remaining saved tissue.

2001-11-13T10:03:00.000-08:00

James has been experiencing excruciating pain in his right ankle the past few days. We went to see the local doctor yesterday and they took a few x-rays and performed a few other tests and concluded that this is all presenting like bone cancer. So James will call down to San Francisco today and see what his doctors have to say about it. Most likely we'll be heading back down there again soon. All this on top of our entire family fighting the flu. Double Whammy. *sigh*

2001-11-04T10:03:00.000-08:00

We went back down to San Francisco a few weeks ago. The Drs ran the whole gammut of blood tests on James. Still no tracible level of PTH. *groan* Good news though, his sister was just told that she now has PTH!! Hooray!! They still don't know what's wrong with his heart. At first they thought the tachycardia could have been caused by his Thyroid hormone being to high but as it turns out, he was borderline high but not high enough to cause any problems like that. Soooo we wait and see what happens I guess.

2001-10-13T10:02:00.000-07:00

This morning, around 3:00am, James woke up with a jolt and sat straight up in bed. He told me he was tachycardic again and that he was going to call the ambulance again. Assuming it was due to his calcium level being too high, I somewhat calmly got up and started getting an outfit together for him to wear. He told me he needed to lie down so he did in the middle of the living room floor. He started shaking and told me to put my hand on his chest. I couldn't believe how fast and hard his heart was beating. It felt like it was going to beat right through his chest. I took his pulse which at that time was between 160-180 bpm. He felt very cold and clammy to the touch and was complaining that he was very cold. I covered him with quilts and blankets and got back on the phone to call the Fire Department when he asked me if I remembered how to do CPR 'just in case.' NOT something you ever want to hear from your spouse. The Fire Department arrived and immediately gave him oxygen. They checked his blood pressure right away but I didn't get the first reading. When they checked it about two minutes later it was 165/140. It slowly but surely started coming down at that point. I followed him in the van to the hospital. The hospital checked the blood which was drawn from him in the ambulance and his calcium reading was 9.2 which is way too low to cause calcium-induced tachycardia. The doctor ran a few other tests and told James he suspects a problem with the conductive system in James heart and told James he needs to have a catheterization done as soon as possible. He is worried about the possibility of damage to James' heart from the repeated tetany episodes as well as all the calcium he's been taking over the past year. So if finances allow, we should be heading down to San Francisco within the next few weeks to have that done as well as his various scans, etc. He is really bummed out about this. We all are. But God is still in control.

2001-09-27T10:01:00.000-07:00

I know it's been ages since I updated but there hasen't really been anything happening. Which is good! James has been doing great! We are almost sure his gland is working now, at least a little bit! There are still a few things that need to be checked out by James' dr. as I previously mentioned, but for now we're just enjoying a month or two (or three!) 'off.' We'll get back to business soon, we promise!

2001-07-18T10:01:00.000-07:00

Due to finances, we were unable to go to San Francisco last week. We will try again around the 1st.

2001-07-03T10:00:00.000-07:00

Ok, here's the latest 'wierd thing' to happen to James. A few days ago, he noticed that on his scar from the reimplantation, there's a purple 'blister' type thing at one end of it. He said it's very painful to the touch. So again, he called his doctors who seem to think it's one of the (internal) sutures from the surgery that's come undone. He remembered banging his arm against a doorjam really hard a few days ago and thinks that might have done it. (hmmm...mabe it knocked some sense into that durned gland??) So there's another thing he'll be seeing his surgeon about next week. If that's the case, his surgeon will go back in and reclose it. Sheesh!! Poor guy!

2001-06-27T10:00:00.000-07:00

James was blessed to celebrate his 30th birthday yesterday. We would like to thank all of the Chemo Angels who sent him dozens of cards, postcards and best wishes. It was a nice birthday.
I would also like to give a little update. Last evening, James experienced quite a bit of pain in the upper left region of his neck about an inch above his adam's apple. It was still quite sore today. He said it feels like a sore gland but there aren't anymore glands (lymph nodes) in his neck at all. So, he called his surgeon in San Francisco who is concerned the tumors (which I mentioned on March 11) have grown and have become cancerous, thus causing him this type of pain. James has an appointment on July 13 to see one of the Endocrinologists so the surgeon said to just come down on the 12th to see him too.
Please pray this is all nothing. God can work miracles!! San Francisco, here we come again...

2001-05-26T09:56:00.000-07:00

Well, upon closer observation by one of James' Endocrinologists and a surgeon, it looks as though James has nothing more than a type of CYST in his hand!!! It's probably NOT cancer!!! He will be going back in July to see a hand surgeon for further testing just to be sure but things look really good right now for him! They do want to lower his calcium intake so his parathyroid transplant will 'wake up'. He will slowly but surely be doing that. It's a bit scary as he will be having a lot of tetany symptoms during this time but this is the only way to get his gland working. There has to be so little calcium in his body so there will be a need for it to wake up in the first place! :)
All three children did very well on the trip down to San Francisco. It had been awhile (last December I believe) since we'd been down there so it was a bit interesting with a small baby, a toddler and an active 5 year old! But it was nice being together as a family. The Handlery went all out again. They are so kind. They gave us a suite! So the boys had their own room/bathroom and James, Hannah and I had our own room/bathroom. I took a lot of video! We all sat on the bad watching cartoons and eating a ton of Jack in the Box food. It was quite a treat! :) Although I must say, it's great to be home!!! Thank you all for your prayers!!! They ARE heard and they HAVE BEEN ANSWERED!!!

2001-05-18T09:56:00.000-07:00

James' dr has requested to see him next Friday, May 25 as there's a possibility of bone cancer in James' left hand. I can't write more right now. Will let you know when we find out something. Please pray.

2001-05-12T09:55:00.000-07:00

Two weeks ago, James had the first of many PTH (Parathyroid Hormone) level tests done to see if there is any of the PTH hormone present. The results came back a few days ago. Nothing yet. It shouldn't be too long though because his sister's is already working and she had her reimplantation only a month before he had his! Lord-willing it will be soon!! He has continued to remain very stable medication-wise though which has been a real blessing!

2001-03-21T09:55:00.000-08:00

James is home!! He came home Sunday afternoon. It's so wonderful to have him back! Last week, he found out the results of his final scan. There's something (what they believe to be two more lymph nodes) directly behind his sternum in his chest. They're cancerous and probably won't respond to this round of radiation but he'll go back in 6 months for another scan. If there are still traces of cancer in his neck and chest, he'll come back again in another 6 months (one year from now) for another round of radiation. They can only give him the radiation treatment once a year because it increases the risk of cancer as it is. So we're trusting and believing that God will move and work in James' body and remove all cancer from it!!!
Also, he had his parathyroid gland reimplanted into his left forearm on the 14th. (well, half of one cut into about 8 pieces) It was a success as far as his surgeon can tell. James was awake during the surgery although he was a bit groggy from the sedative they gave him! He kept trying to watch what they were doing! He also saw his gland before they reimplanted it! EEW! We will be looking to move within the next few weeks so we can be closer to a hospital for James. In fact, tomorrow is the first day of house-hunting! Please be praying for guidance for us as we make some big decisions.

2001-03-11T09:55:00.000-08:00

James had a scan last Friday after having the higher dose of radiation. They found a couple moderately-sized tumors in his neck. They aren't sure if the radiation will be able to get rid of them or not but with all of the radiation in his system, at least they shouldn't spread. We'll know for sure in about six months.

2001-03-04T09:54:00.000-08:00

He had another scan Friday which showed what appear to be a couple of tumors although it's difficult to tell whether or not they're tumors or lymph nodes that were accidently left in. (they had to rush him out of surgery back in October due to Malignant Hyperthermia so this is certainly a possibility) However, when the surgeon felt James' neck he couldn't feel anything so he said whatever they are, they're too small to operate on at this point and they're hoping that the radioactive iodine will just burn them out. He was able to spend a relaxing weekend at his brother's house. He even had access to a computer so I set up a video camera to the computer and just left it on all weekend so he could see what life at home was like! We were able to chat a lot of the time as well. It was really nice to have him 'here' even though he is so far away. He is now on his way back to the hospital for the really intense dose of radiation (orally this time-a pill) which he'll be receiving tomorrow. He won't be scanned again though until Wednesday or Thursday (3/7 or 3/8) After the scan, he'll be able to start taking his thyroid hormone again! Not the fast-acting one he had been taking but the long lasting, original one he was taking in the beginning! He's going to feel like a million bucks! (he'll also be off the no-iodine diet as well!) Yay!!

2001-03-02T09:53:00.000-08:00

James is down at the VA Hospital...again. He is having the radioactive iodine injections (ingestible liquid) and his full body scans to check for the presence of cancer or any thyroid tissue. He's had two scans so far and all they've found is a bit of residual thyroid tissue and right above where his thyroid used to be there's a small cluster of cancer cells. They're pretty sure the radioactive iodine will just burn all of that up though. It's supposed to anyway. So, so far so good! Praise the Lord! He is in very good spirits and is doing wonderfully. He will be down there until sometime at the end of this month. He will be having part of one of his parathyroids reimplanted into his forearm on the 14th! YAY!!! It will take usually between 4-6 months for the gland to establish a blood supply and start releasing it's hormone but once it does, NO MORE MEDICINE ROLLER COASTER RIDES!!! We're so excited!! I'll keep you posted...Oh yes, one more thing...
~o~o~oHAPPY 5 YEAR ANNIVERSARY, SWEETIE!!!!!~o~o~o

2001-01-23T09:53:00.000-08:00

On Sunday, the 21st, James went into full tetany again. It was horrifying. He had mentioned that he didn't feel 'up to' going to church so I took the boys alone. As I pulled up in the driveway he came running out of the house and told me to stay in the van because he needed to go to the hospital NOW (which remember is an hour away). He had already called the ambulance but it hadn't arrived yet. I asked him which end he was at. (meaning is the calcium level too high or too low) He said it was too low. He knew he was going to start going into tetany at any moment. I called the neighbor to come get the boys as the ambulance pulled up. They immediatly put him on the heart monitor and ran a strip. His heartrate was 170 bpm. I ran and got the quilt we always bring to the hospital with us and laid it out on top of him on the stretcher. I wanted him to have a piece of me to hold onto back there since I had to ride up front. I wanted to be with him so badly but they never allow me to when he's in the ambulance for insurance reasons. We set off for the hospital and about 10 minutes out or so, the guy in back told the driver to upgrade to Code 3 (lights and sirens) and to go to the nearest hospital (instead of our hospital) as it was 10 minutes closer and James was becoming more and more unstable. I turned around and saw him injecting a gram of calcium carbonate into my sweetie's I.V. I knew at that point James was in full tetany. I yelled back to him that I loved him and that I was praying for him. He was saying, "I love you, Rebekah" over and over again. It was hard to understand him because his mouth was paralyzed and he had an oxygen mask over it. That's how he sounded in the hospital the first two times he had tetany. It is so scary to hear him like that. To know that he could die and there's nothing I can physically do to help him. I just started praying quietly. I didn't know what else to do. It's such a helpless feeling. About 10 minutes later, the paramedic in the back told me he was starting to 'come out of it.' By the time we arrived at the hospital they were back there joking around. It's odd how quickly he seems to stabilize once he gets the calcium injection. They kept him in the hospital overnight to monitor him and make sure the new medication regemin would work for him. So far so good. PLEASE continue to pray that we'll get this medication thing straightened out and that he'll have his parathyroid reimplanted into his forearm SOON!!!

2001-01-20T09:52:00.000-08:00

note* Well, I've done a bit of 'pre-spring cleaning' in the journal area of my webpage. (now, if only I can update everything else!) As you will notice, I have combined all of my journal entries for the year 2000 onto their own page. (see link above or go here. I tend to get a bit long-winded (duh!) at times so I thought a page ar two a year would be the easiest for people to read. So here goes for the official start of the new millinium.
We've had a bit of a problem regulating James' calcium intake. If his calcium level goes too high, he becomes tachycardic and hypertensive (fast heartbeat/high blood pressure). If it gets too low, there's always the 'Wonderful World of Tetany.' So far, we've had him on a consistent schedule with his meds yet his levels just keep fluctuating. *sigh* Last Monday, we had to take him by ambulance to the hospital because his heartrate was up around 200 bpm and his blood pressure shot up. (calcium was too high) It is so frustrating. He's been in and out of the hospital on both ends of the spectrum twice in the past week and a half. One half of his Endocrine team is going to convince the other half to reimplant his parathyroid come next month while he's in for his radiation treatment. His surgeon wanted to wait until 6 months (April 2001) after his Parathyroidectomy before reimplantation but this is too much of a roller coaster ride for us and it is wreaking havoc on James' kidneys and heart. (among other things) So, we're looking forward to the day when he has a FUNCTIONING parathyroid again to regulate his calcium for him. No more calcium/vitamin D meds!! It could take 6 to 8 months from the time the parathyroid is reimplanted in his arm for it's new blood supply to do it's job and the parathyroid to start functioning and produce PTH (parathyroid hormone). I can't wait. Just an hour or so ago, he was having symptoms of SOMETHING but just can't tell what it was. Too low of calcium? To high of calcium?? Hypo-thyroid?? AACCKKK!!! His symptoms are changing so he can't rely on how he used to feel. Hypocalcemia feels different now than it used to. Same with hypercalcemia. Then there's the synthetic thyroid hormone issue. He's been a bit low there too which can sometimes mask calcium symptoms. They (his doctors) are very slowly increasing his synthetic thyroid hormone to compensate for that. Oh yeah, AND he has the flu again which also changes the way his body absorbs calcium. It's so scary because if he guesses wrong and takes the wrong approach, it could kill him. We live an hour away from the nearest hospital so by the time we drive all the way there, have his blood drawn to check his calcium level (to see if it's too high or too low) and wait for an answer, he would most likely be dead from the outcome of whatever end he's dangling from so we have to self-regulate his medicine and analyze his symptoms ourselves. Ok, I have to vent here, bear with me...AAACCCCCCCKKKKKKKKKKKKK!!!!!!! (pulling my hair out in frustration) It's just terrifying sometimes. So far so good. He's asleep on the couch right behind me. I just feel so bad. I wish there was more I could do for him. I know that my prayers are the most important thing he needs and my just being there for him but it's still so hard. It's very difficult to watch someone you love suffer like this. Please continue to keep him in your prayers.