Turned a corner yesterday. I am not feeling the pain as intensely as I was. I didn't take any percacet during the night. I did take some before going to bed. Usually I wake up after 5 hours feeling very stiff, and a little torqued. I still have nerve pain, this is a strange sensation accross my back and front. Similar to a sunburn, but different.

------a few hours later---------

I was getting a glimpse at the future. Had some pain develope during the morning. It's ok, now I know I will be getting back to normal pretty soon. Thanks for your continued prayers for healing.

Also, please keep praying for harmony for the boys. Things seem to be getting more normal with me being home. Some signs shoing up at night, but with time, things will go back to a normal pace, better than before! One cool side effect of the pain and possibly the medication, I can't yell.... I am learning to speak in a quiet tone and seeing how the boys react. Silas especially doesn't like a raised voice even. Learning:) I'm seeing that it is mostly just getting attention that I have yelled in the past. Thinking of possible solution for that. Now you all get a real personal glimpse into my home.

Prayer really works. Things are coming around for our family. The kids have been going to Jungle Kamp at our church this week. They were excited about bringing money for offering because it is going toward buying a cow for a family in India, for milk, and when it has a calf, they will share or be able to sell it to help another family. How wonderful to have kids who care about another family enough to be excited to bring the money they have. Caleb earns a penney per weed with a root, and he brought his $$ for the offering. Today however, he's very excited about earning more money so he can slime Miss Connie and Pastor Paul.

I'm feeling better, that's nice, very vigilent with the fat though which is a challenge. Rather just skip eating...but the docs and a couple of people have warned against not getting the food and protien I need. I had a scare for the last 3 days. I ate 'lean' ground turkey. Didn't read the label. Not the same as chicken breasts. I could feel the gurgling as I breathed. Just a small amount, but, I freaked out in the middle of the night last night, thinking about another stay in the hospital........leaving Silas and the other boys again... asking for even more help from you all, and those that don't read the blog too.

But, God is so good, I don't feel the gurgling sensation any longer. I have my follow-up appointment to remove stitches, have an X-ray, talk about the pathology report.

For next week, I need people to come over and hang out with us. I'm not yet totally autonomous, although I am able to do much more than before. If you are available to hang out with us, play in the pool(large extreemly fun kiddie pool). Morning shift, afternoon shift, let me know:) Gotta let Lawrence get back to work full time. His boss has been extremely accomodating. Such a blessing. Need to respect and give Lawrence back to Air Systems.

ok pain med filled- thank you Target

And no, they didn't see a missing date! Time to move to mailed monthly regular drugs anyway. This was the push I needed to get that finished.

I'm eating some protien, and feeling a little bit better, also not stressed about not making it through tonight at home.

As usual, please keep the prayers flowing. Please add my sanity to the list. Really.

whine alert

I am getting so frustrated with pain, not being able to do my own laundry, clean my own house, take care of my own kids, feed us all.

I knew I was getting low on pain meds this weekend, but the docs office is closed till monday. I called in the afternoon today, Monday, and because of the medication being 'a controled substance' you have to have a paper perscription. Big neusance, Lawrence drives from San Jose to San Francisco to pick up by 5p. Annoying, but since I didn't count my meds on Friday, something that needed to be done. Well, they forgot to put the date on the perscription in the rush, and now, at 830p we get a call from the pharmacy, we can't fill this percription without a date.......... I don't have enough meds to last the night, and am in pain, already not feeling well in general, and now Lawrence is out trying to find a pharmacy to fill this percription at 845p! He has my medical card and ID so hopefully this can be done. The kids haven't eaten, I made some spagetti, but they aren't here yet to eat, they have to get up for cool Jungle Kamp tomorrow, a good thing, but all very frustrating.

I can't remember if I've already complained about a severely low-fat diet I'm on to heal my gap/whole in my Lymphatic system. The thoracic part of the lyphatic system carries the triglycerides, so to heal it, you give it a break, no fat. The only fat I can eat is from the 5oz meat I'm allowed each day. Even lean chicken, fish etc.. carries fat. I thought I knew a lot about nutrition, but as with all things in life, the more you learn, the more you find out you don't know much.

Enough grumping for now. Please keep the prayers coming, or going. I think I may be low on getting my sunshine.

I'm back.........Again!

Thank you for your prayers. Monday was a dark day for me. The thought of another thoracotamy looming was terrible. God got me through moment by moment that day. It was a day of dependence on God. Thankfully, Gods grace carried me through, His strength is made perfect in my weakness. I was at my weakest and I claimed that verse, and received comfort from God.

Good news is I have a diagnosis. I have/had Castlemans Disease. It is a very rare medical condition. Lawrence googled it and found that there have been only 200 cases on record. The tumor was a lymph node that got very BIG. This is difficult to diagnose via biopsy, and needs to be removed to be diagnosed. So that’s where we are. There are 2 types of Castlemans, the more common one is the one I had, 1 tumor, you remove it and should be ok. Some doctors follow it up with radiation, but my doctor doesn’t think that is necessary. She will be taking my case before the tumor board. They meet on Fridays, so don’t know which Friday she will be able to meet with them. The other, more rare form of Castlemans disease, is multiple, systemic tumors along the lymphatic system. I don’t have any other tumors, had a pet-scan to verify this a month ago.

So back to why I was re-admitted. I was leaking lymphatic fluid profusely from one of the closed chest tube sites. I filled several towels, including a full size bath towel. The lymphatic system carries triglicerides from your stomach to your liver. Because the lymph node was removed, not all of the channels were clamped(they are translucent and not easily seen), and the doc didn’t know she was removing a lymph node. So this led to an internal leak. I didn’t feel like eating in the hospital, so I ate very little, which means the lymph system wasn’t carrying much. When I came home I began to eat more, and after a week build up, I sprung a leak. I was having a difficult time getting a breath on Saturday for about a 5 hour period, then it went away.

What this means now: I am on a severly low fat diet. The only fat I'm allowed is 5oz of meat a day, which can be interchanged with an egg for 1oz of meat. This includes all animal meats, even fish. I will be on this diet for 2 weeks and then a more normal low fat diet. So, absolutely no Oreo therapy allowed! I'm doing ok. Ihave pain in my insision and chest tube areas still, but it is managable. I'm off the medication that gave me amnesia, so I just may remember conversations now:)

Thank you for your prayers, please do not tire of doing good, and continue your prayers for healing and harmony, peace in our family.

Pray for miracle that the hole heals in the next 3 days.

The doctors believe there is a hole on the lymph, which most likely got nick during the surgery.

Today Tuesday, they plan to insert a chest tube to discharge the fluid from the inside and to give the inner lining a chance to heal.

Heidi is on NPO - which mean no food and no drink for the next three days and hopefully the lymph will heal itself. The goal is hopefully the hole in the lymph will patch itself. She can only drink when she is taking medicine.

If it does not heal itself in 3 days, then Dr. Kukreja will perform another full open surgery, search for the hole then patch it. That is, if she can find the hole. The problem is, it is very difficult to see the pipeline of lymph because they are almost invisible to see.

Dr. Kukreja believes she can find the hole with 50% certainly. She said in Boston, there is this procedure where they inject dye through the foot so the doctors get a better chance of finidng the hole on the lymph. The procedure is very painful and she does not think it is practice at UCSF.

Please pray for miracle that the hole heal itself in the next three days.
-Aquino Family

Heidi is leaking at her left side and is back at UCSF - Please Pray.

Friends and familys,
Heidi is leaking fluid at her left side, and when she called UCSF Sunday evening, they told her to go back to the hospital.

We got to the hospital about 1 am in the morning. The attending doctor, Dr. Yang don't know what is leaking out, so they are doing several test. The leak is like a watery drip on her side, and the doctor/nurse placed a plastic bag to catch the leak to measure how much it is leaking.

Her surgeon Dr. Jasleen Kukreja was phone called at her home (about 2am)and informed by Dr. Yang of the situation.

The doctors think there are (3) possibilities: lung, lymph vessel or pus. If pus then Heidi might be infected, but they doubt it because she has no fever. Whatever it is, they started several culture to find out. The culture result won't be known for about 2 days. In the mean time, if the doctors think it is an infection, then they would probably start her right away with an array of antibiotic (shut gun approach) non-specific bug killing process. Only when they get the culture results, then they could start to kill the bug with a specifc antibiotic.

They did an xray and the xray look the same as when she was discharge from the hospital last Monday and the leaking fluid should be clear if it is from the lung. But the fluid look like 1% milk, not so white and is watery.

If it is coming from the lymph then the leaking fluid would have a higher viscosity (not watery).

Dr. Kukreja has other morning duties at other UCSF sites and she won't be able to see Heidi until afternoon. Heidi is forbidden to drink or eat anything in case the doctors will need to operate on her again.

Please pray for Heidi that the doctors are able to determine quickly where the fluid is coming from or causing it. And that the doctors come up with the best solution for it and not so painful for Heidi. And most of all, pray for fast recovery.

Thank you for your prayers.
The Aquino Boys.

Oh, i ask the doctor if its Silas' milk (breast milk), and he said maybe - not sure.

A healing itch?

I'm itching like crazy! My nerve pain covers to my left side, stomach, and part of my chest and back. All signs of proper healing but I'm feeling a little crazy from the itching and healing. Had to tell someone!

I finally am on top of the pain today, and they pull the happy feeling right out from under me, and say it's time to start weaning. Well, it is better than when I was supposed to begin weaning last week and wasn't in control of the pain yet. I just can't wait till I feel normal and pain free again.

Friday I did ask for the pathology report to be faxed to me. Since I don't have it yet, my assumption is that I'll get it when I see my doctor on Friday. I will of course post the results as soon as I know anything. My appointment is 10a, Friday 13July.

Reflecting on my experience, I think I am not as queasy and uneasy with needles anymore. Every morning, I was woken by a blood draw. Quite an experience being in the hospital for 8 days. I was definitely the spring chicken in the Cardiac / Thorasic recovery floor. There were a few other youngsters like myself, or younger, but most had gray hair and their ages were 80+. My 3rd room-mate was 87 or so, and was a fun person. She had checked in the night before for a similar procedure. She had lung cancer and was having a lobe removed, although her surgery was going to be thoroscopic, so faster healing. So cool you can be healed by 1 surgery.

I'll share more reflections, and bore you with a blow by blow when I'm sober. I'm high on percacet right now, though sadly, and gladly I am starting to wean.

High as a kite

Hello everyone. I'm happy to be back home. Weird to be home and not myself. The kids just kept playing. My being home was almost incidental. The pain is unfortunately not at bay, but better. I talked to a nurse today about my med and pain situation. I have to wean off a couple of the pain meds already. It is a challenge, but I know this will be a memory soon. I'm having quite a bit of nerve pain, which is good in the theoretical sence, it means I'm healing, the preverbial itch under the band-aid. The nurse has me upping my nerve pain medication, so I am hopeful this will allow for more comfort and longer sleep at night. Please continue to pray for sleep and pain abatement.

It is interesting to be on narcotics. I think I present fairly normal, however, my sister called while on her way to my house today and I said cool, did we pre-arrange this? I didn't even remember we had talked about it 2x! Thems the breaks. I'll take the drugs and the airheaded self over more pain at this point. I am getting very tired of it though. Can't believe sometimes that it's dragging on so long.

Moving right along, my kids are doing well. I am so blessed, my heart overflows with gratitude and thanks for all that mom, freinds, and spiritual family are doing. It is a wonderful thing to be taken such good care of. Therese is running my daily schedule, many of you have been called by her and have so graciously been bringing meals and taking the kids out for hours to have fun and give Lawrence and my mom, Grammie a break. Grammie has been working so hard, doing laundry and household chores, on top of being available to take care of kids in between times.

Chris took my kids from 10 or 11a to 9p!!!! the other day. She lost track of time and called to see if she could keep them longer to feed them! To lose track of time when watching someones kids, wow! How wonderful to be so blessed! I can ramble on an on right now, I'm high from the percacet's.

All of the perscriptions are not pain meds, some are anti-inflamatorie- can't think clearly, other unmentionables and of course pain meds. Lots of meds! I have a little yellow notebook where I keep track of what to take when and how many hours apart. (4) percacet 8a . That's for clarity. It's really quite overwhelming to be sent home with a ton of meds and not being clear headed. I carry it around, or have it near, so I can keep up with what med is coming up. Sometimes, I'm counting the minutes till the next dose. Can't wait till this phase of healing is over!

Please keep praying. And thank you for your prayers. Very cliche but they work! Interesting to get a peek into the life of a junkie. No wonder it's hard to tell if someone is on drugs, they seem pretty normal, just a little off.

Last Entry: the boys mama is home

Late this afternoon, Heidi was release from her hospital room. She had three roommates while recovering.

The nurse release her with (10) different types of pain medication. Yes that is ten. The nurse even said to make sure we don't lose some of the presciption because they are worth at least $300 dollars each in the street of San Francisco.

Heidi was feeling good last Friday that they removed the epidural and catheter. However, within about an hour she started to feel the surge of pain again. So on Saturday and Sunday, the pain doctors tried to figure out the best way for Heidi to manage her pain.

By Monday morning, the pain doctors finally came up with the correct combintaion of ten different types of oral medication for managing the pain.

When I came for Heidi at 3:30pm, Heidi was asleep. The nurse had a little difficulty waking her up, so she lowered the one of the medicine from 1,500 mg down to 1,000 mg (i think that is metric for milligram).

Wells that all folks, that is my last log entry for Heidi.

Last notes: Thank you to Grammie for watching the three boys when i went to work and while i visited Heidi. And while Heidi was gone, Silas grew up and is now able to open our fence's gate and he whispers to my ear.

And thank you to the folks whose been bringing dinners and for the folks who watch the three boys (and gave grammie a short break), and thank you to the ladies that clean our home.

Last log entry for Heidi,
Lawrence

Chest Tube is out

Chest Tube is out, actually more like side tube. The hospital folks remove the chest tube early this evening about 7pm Thursday 6/28/07.

This means also the nurse are getting Heidi ready for discharge by decelerating the pain management via the epidural. Just like one of those long jet plane ride, the pilot slowly lowers the plane from high altitude to lower altitude so the passenger can get use to the pressure [ear]. In Heidi's case however, the nurse are slowy lowering the doses of pain medication from 14 cc (thats metric folks) down to zero (i guess) by 0.5 cc every hour. I forgot to ask the nurse what the unit time for 14 cc (per minute or per hour).

What i dont understand is that every time the nurse lowers down the medicine, Heidi uses her clicker to get more intake of the pain killer - she basically overrides the automatic fluid flow.

For a while early this evening, she had this bad hiccup and she couldn't talk becuase it hurts her so much.

I went for a walk with Heidi around the hall corridor. She even lapp some other fellow, and he had a helper carrying his oxygen; while Heidi had hers on wheels. At one point Heidi got mad at me for slowing her down because i keep on stopping reading the factoid on the walls. One factoid say: the blood vessel is 60,000 miles long enough to go arround the equator two times. Another say the blood circulate around the body in 20 seconds. Now i wonder if that means the blood circulates 60,000 miles within 20 seconds.

I heard that people around the world come to UCSF for treatment, and this must be true because when Heidi and I were going to her pre-surgery appointment they kept on asking us if our hotel is nearby. And Heidi would politely say something like "Oh no we leave accross the bridge, and didn't have take a plane or something, we just have to ride the traffic."

So with that in mind, I expected Heidi's roomate to be someone from a very far place. Nope. Her roomate lives on on West Avenue which is a few blocks from our home in Hayward, California.

I ask if the result of the biopsy was available, they said it will probably be ready by early next week.

Heidi told me that since the chest tube is out, visitors are now welcome.

Thank for your continued prayers. Please keep on praying for Heidi. Some say that Heidi's surgery is sometimes more painful than an open hearth surgery. Thats probably becuase Heidi's was "open surgery".

Folks, that's all for tonigh'ts report,
Lawrence

Heidi is out of the ICU

This afternoon (Wednesday 6/27/07) Heidi was transfered from the ICU to the regular hospital. Most of the tubes that were dangling around her body were removed, but not all. She stilll have the chest tube coming out of her left side as a drainage tube; and she still have the catheter, epidural and other tubes and monitoring devices hook up her still.

Via the epidural, she's taking Dilaudid with her thumb self-click. The ICU nurse explain to me that Dilaudid is 10 times more powerful than morphine. She is also taking Thoradol; which was approved override by Dr. Kukreja because the other pain doctors would not approve more than one dose. I am told that Thoradol is like 100 times more powerfull than Ibuprofen.

Yesterday, Tuesday morning, the doctors were concern that they may have nick into the esophagus because Heidi's pee were not at the level that it should be. So they did some "live" xray for which she had to drink some bitter medicine and some bromide. The xray ruled out the possibility of cut on her esophagus because it was not leaking.

Heidi and I meet Dr. Jasleen Kukreja a couple of weeks ago for the pre-surgery meeting. My impression of her was that she really knows her trade like a good car mechanic knows the problem of a car by the sound even without opening the hood. She answered all our questions and not just the way she spoke with confidence but the way she answered it made me feel she really knows her stuff. On the way home that day, I even mention to Heidi that that doctor knows her stuff. Something about her not throwing in big words and instead use layman terms. And when she did use some not so common word, she immediately followed it up with an explaination. Or, she'd say "i am not explaining this well", and she explains it differently. She was not cocky.

I just google her name, and she is some "rising star" in her field.
http://sfgate.com/cgi-bin/article.cgi?f=/c/a/2007/02/11/CMGDVNKA3H1.DTL

And for those who want to see the "puppy" (warning: do not click if you don't want to see blood)
click here (if you can't see the puppy, send me an email):
http://cache.pando.com/soapservices/Package/package.pando?id=8E7A810A82D89EB4DB9B67E08CB9D2D11416A796&key=12A9BD88D524A9FCF30B26B05525A73B4181785BF1F64BAAF121DC62C3971EF5&tt=S2W&embedId=1F087B7096DC1C7AF99E25401CF628A7

2nd blog for Heidi,
Lawrence

Surgery Day

The Thoracic Surgeon abandons thoracoscopy procedure after a couple of hours of maneuvering her tiny cameras and hers tools of trade within the 3 to 4 inch incision. Dr. Jasleen Kukreja goes for the full open surgery at below Heidi's left arm pit and between the ribs so she can remove this one large "puppy" the size of tennis ball and golf ball combine.

I asked Dr. Kukreja how big the cut was and she motion with her fingers (pointing to her pinky and her thumb) the approximate length which i guesstimate to be about 9 to 10 inch. She said she tried really hard to get that puppy out using thoracoscopy but the mass was hard-firm to touch and difficult to maneuver her camera. Her original plan was to go in there, bag it with plastic bag and squeese it out of a small hole incision . Due to difficulties, she went with the second option by way of open surgery. This way she did not break any ribs nor cut any ribs.

Heidi checked in 6am Monday 6/25/07; and, at 7:30am she rolled into the surgery room. By 1:35 pm the surgeon handed me a picture of the "puppy" that she got out. Earlier when Heidi (and Caleb) requested a piece of the mass to take home to look under our microscope, the doctor look at her funny becuase nobody else has ever asked for sample. Heidi thought its kinda like when you take your car to the mechanic, you can always or at least the customer have the right to ask for the old parts. But because of some bio-hazard health code regulation, the next best thing was a colored picture.

At the previous office appointment, Dr. Kukreja said there was 20% chance that she may have to call in a Neuro Surgeon if the mass is wraped into the spinal chord areas. Dr. Kukreja did not have to call in the Neuro Surgeon. And she got it out.

However, the surgeon said because of the open surgery, the location and how big the incision was, Heidi will have some [BIG] pain. Later Heidi ask the surgeon about recovery if these was the 5 to 7 day hospital stay recovery as oppose to the 4 to 5 day hospital stay recovery for thorascospy - the surgeon responded by saying " we'll see..." . I think the surgeon did not want to answer becuase i think the surgeon did not want to plant in Heidi's mind that the hospital stay could be longer than 7 days (plus the weeks and weeks of home recovery) because its an open surgery.

The hospital finally let me see Heidi at the post-op room at 4:30pm. She had tears in her eye because the pain management doctors could not figure out how to relieve the pain in her shoulder. Heidi have epidural in her spine and a clicker on her right hand so she can self-click to control the pain from her chest area down to her odomen areas, but not the upper shoulder. The doctor tried one dose on Toradol and that did not relieve the pain. Maximum of one dose of toradal was allowed because possible side effect was bleeding - and doctors don't want bleeding.

Heidi is allergic to morphine, so that option is not available.

At about 9:45pm they move Heidi to the ICU (10th floor for cardiac, lung and vascular). I came in to the ICU about 11pm and they were changing her bed sheets. Heidi had to roll as much as she can to one side and she was in BIG pain while she rolled over.

Some of the side effect on the pain medication or whatever the anesthesiologist (i think that was the nurse said) gave her causes constipation. So, the ICU nurse give her some drugs to counter act the constipation.

Even though Heidi had not drink liquid since the night before, she has IV for fluid intake and the ICU nurse were a bit concern that Heidi's output (pee) level were not as expected. They then took some blood sample for testing on why her pee is not at the level they expected. They also flush her catheter.

As i left to go home at about 12:30am, i could see Heidi's skin below her throat areas shaking (vibrating) from pain in her shoulder.

And for the folks, friends and families reading this blog: Please pray for Heidi for relieve from pain or at least manageable pain at her left shoulder; and, a quicker than typical recovery from an open surgery. And for the other pain management to continue to work. And for the nurses and doctors to be always at their peek performance skill level and be able to make the right call/decision at the right time. And for the nurses and doctors to be attentive to Heidi's needs.

writing in for Heidi's blog,
Lawrence

Thank you in advance

“The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore.”- Psalm 121:7-8

Thank you for puting my mind at ease and helping take care of my children, feed them, play with them. I can work on my job of taking mind altering drugs and healing:)

All set for surgery! And away we go!

After raw few hours of being overwhelmed yesterday with three demands, everything is coming together. Many of you have signed up to help with childcare, and bringing meals. Knowing my family will be fed is a big load off, and knowing Lawrence will not be on 24/7 is big too.

The pulminary function test is on Wed at 2p. Pre-op appt is on Friday at 830a and surgery is at 6a Monday 25June.


UCSF Medical Center at Parnassus
505 Parnassus Ave.San Francisco, CA 94122(for mail use zip code 94143-0296)
(415) 476-1000


If you are available to bring a meal or be on call for childcare, please email me. Therese is coordinating and will call to arrange dates.

You are welcome to visit me in the hospital un-announced or announced, as I will likely be just hangin' around by an IV:) If you want to do more than sit with me, we can take a walk, yes that's encouraged! If you're a touchy feely type you could rub my feet, my hands, massage my scalp, or just talk with me. I only mention things to do since I usually have no idea what to do or say to someone in the hospital who's gone through surgery. Sitting and talking is a wonderful gift. Reading the funnies from Readers Digest, or other, is a fun way to spend time also.

If you want to bring me a meal, I'd welcome that too. Homemade, restaraunt... Hospital food has some deficiencies, though it is great to be fed and not have to lift a finger to prepare it! I like Thai food, spicy food, vietnamese food, mexican food, middle eastern food. I especially love veggies and fruit and salad, romaine lettuce my fav. I'm pretty open palated.

I have had my eyes open to many things. I have a pretty deadpan sense of humor, and this is just fuel for my humor. No need to feel pitty, or feel you have to put on a somber face. I am very comfortable with what is happening to me, not that I won't be in pain and on drugs:)

This whole experience has been a catalist for fast personal growth and I truely see it as a good thing in my life. This is an 'information package' that I no longer need, so good ridence, and thank you for what I have learned. The Lord has sustained me through your prayers. Where 1 or more are gathered together in my name(Jesus) I am there. So many of you have lifted me to the Lord in prayer and without that, I could not have the peace I have.

I am so thankful for the health I and my family have. This type of experience really puts that in your face. (Being pregnant does too, at least for me:)no I'm not pregnant, I'm just saying)

THings to pray:

• For Silas to adjust, be busy, have fun with life, not tramatic
• For all of my family to grow from this in charicter, deepen their faiths now or in future because of this experience.
• Peace between all of them, support eachother, get along, resolve conflicts on own
• Breakfast and lunch every day
• health

For me:

• IV's to be done skillfully and not hurt
• For doctor/s: health, focus, simplicity, attention to detail
• no long term damage, nerve and all else

I can't think of anything else. I'm sure you can. God sent his holy spirit to interpret our prayers, in groanings and utterings too profound for us to understand. So just pray anything. God knows better than I/we what needs to be done.

Above all else, I want Gods glory to be reflected and seen through this experience. He is truely worthy of my praise and worship. Every good thing comes from him.

Surgery date set :-o

Now it's getting real! My pre-op appointment is Friday, 22June @ 8:30a. For those of you, who, like me think that is next month, that's this Friday! Surgery is scheduled for 6a Monday 25June.

Of course this experience wouldn't be complete if there wasn't some kind of wrench in the works. I have to take a pulminary function test before this date. There are no appointments, available, so surgery will be cancelled if I cannot get one before surgery! I have a pretty high tolerence for stress right now with all of your prayers, but this makes it stressful for me.

Please pray for a quick cancellation or not needing pulm. function test or ????? Please and thank you for bringing me before the Lord in prayer. We are really going to need to be carried by your support through these next 3-4 weeks.

After the Pre-surgery appointment

Ok, first things first. I just read the Pet-scan report. The biggest thing I was hoping for was for the mass to have shrunk.The measurments of the tumor can vary based on how it is measured, but...... new measurments are: 6.3 x 5!!! Origional measurements were 6.6 x 4.6 x 9cm in the MRI from March 21. similar measurements from March 12, 8.4 x 4.1 x 5.4 Variation based on exactly where is measured, who is measuring. The most recent report says not significant change, but I'll tell you, to me this is significant. There has been much work, prayer and more in my life that I attribute this change to.

On to what you're wondering about, the Thoracic surgeon consultation today. This was a pre-surgery meeting. She answered 90% of my questions before I even asked. I did ask for the tumor, or if I could at least see it. She said that was a first for her:) She said she'd try to take a picture, if the equipment was working, if the wind blew from the west at 50 knots and it rained at 10a. So I doubt I will get to see my companion. So long little guy. Thanks for what you taught me, glad you're out of my life.

We're looking at the next 2 weeks or so. THis is very soon! The goal and expectation is that this will be thoroscopic surgery, like laporoscopic, but in the chest cavity. There would be 3-4 incisions, a bit larger than with laporoscopic due to bones and the torque of the instruments. There is a chance of numbness in those areas, we'll pray not permanent. Other misc. info, not for the fainthearted:) Main surgery will be from my side. The largest incision will be on the back, and is expected to be the removal site.

Hospital stay will be 3-5 days if all goes according to plan above, and if neurosurgeon is called in, will require more things not for the faint hearted. I love all this biology stuff, so if you are interested, feel free to ask and I'll be happy to share all the future gore with you:)

If thoroscopic doesn't work out, hospital stay would be 5-7 days. Healing time at home for either way will be approx 2 weeks on pain meds.

At this point, the Lord has been so good to me. He has given me so much grace. I pray the grace my children need to not just survive while I'm gone, but to thrive will be given to them as well.

I plan to 'read' lots of books on tape/cd. So if you have some cd's, books, music you'd like to share with me for my enrichment at the hospital stay, I would be very blessed by them. Be sure to put you name on them so you will get them back afterward. My mind will be drugged out a bit to remember what came from whom. If you have a tape/Cd player walkman/ earphones I can borrow please let me know. This will make the hospital stay a better time. Almost a trip to Calistoga, ok not even close:) But much better.

Lawrence, Caleb, Malachi and Silas are going to have the toughest time with this experience I think, so please remember them in prayer, and if your local, and so inclined, drop them a meal with-out cheese:) My biggest challenge with the surgery is leaving my family without me. A blessing and a challenge. I have been going out on my own much more lately, so I'm not completly without practice as you may think.

As soon as I have a date for surgery, I will post it. This will be at UCSF. I will post all info, address, phone number, etc... I welcome unannounced visitors, calls, meals etc... while I'm in the hospital. I doubt I'll be too busy in the middle of my gimping around:)

Radioactive milk

In the interest of keeping Silas from getting Radiation poisoning, I had to watch him sadly fall asleep without nursing. After what seemed like hours of inconsolable screaming in the middle of the night, I decided to rewire his brain and turn the T.V. on so I could get some sleep. It worked for a while. Once my back was stuck in a sideways position, I picked him up to bring him to bed upstairs.......screams..... It was a hard night. This was pretty close to the age when I night weaned both Caleb and Malachi, but I don't have the motivation of an impending baby to give me the willingness to go through this more than 1 night!

I went to my moms to pump to releave myself. I had no idea I had enough milk to be this uncomfortable, I hadn't nursed since Tuesday morning. There's nothing to make you feel contaminated with radiation, like having to throw the containers away as well as the milk.

Training Complete!

I've now had several cat scans, MRI, X-Rays, and now a Pet cat scan. I've completed training on all scans:)

After filling out my paperwork, I received a beautiful bracelet for my stay. I went into a small room with a big blue throne. Even had a pillow for my arm. After looking over my veins for several minutes, the very personable Tech hooked up the IV. Have to say, this was the best IV I've had. Least pain of other sticks, and no bruising even now. I wish I could remember what it said on his nametag. Radioactive something. Very cool title. First, saline injected via IV, then after a try at drawing my blood from the IV, he had to stick me:( Checking glucose level. If level is too high, as with diabetics, the scan will not work. Then he injected the radioactive isotope florine 18 with glucose. This radioactive isatope was brought into the room after all the prep was done. It was in this metal container marked radioactive and injected from there into my IV.

After this I waited in another room for 45 minutes so the glucose can begin to metabolize in the tissues. Info on the bottom of this entry about pet scan and more info. Next I was brought into the room with the cat scan equipment. The Tech, Michael, very kind, enjoyable even, got me set up on the bed, if you can call the long plank a bed. 1st there were x-rays, then cat scans and lastly the pet scan which lasted 35 minutes. Lawrence was able to be in the room for the petscan portion.

After the pet scan they gave me water, and a granola bar! Who ever heard of such a thing! How nice. All around, best customer service in a medical situation I've encountered.

I can't nurse for 24 hours, so that takes me to 2p tomorrow. Poor Silas. He was so sad tonight when he couldn't nurse to sleep. He laid under the piano bench gently crying face-down on the carpet. So sad. He didn't cry and scream, but morned.

Positron Emission Tomography (PET) which is a more precise and sophisticated technique using isotopes produced in a cyclotron. A positron-emitting radionuclide is introduced, usually by injection, and accumulates in the target tissue. As it decays it emits a positron, which promptly combines with a nearby electron resulting in the simultaneous emission of two identifiable gamma rays in opposite directions. These are detected by a PET camera and give very precise indication of their origin. PET's most important clinical role is in oncology, with fluorine-18 as the tracer, since it has proven to be the most accurate non-invasive method of detecting and evaluating most cancers.

Pet scan rescheduled

My insurance denied the pre-authorization for the pet cat-scan. I was in the middle of another busy project, and had to add dealing with calling. I finally found a wonderful, helpful person, Aurelia(please pray for her to be blessed and to know Christ). Unfortunately, after an appeals proccess yesterday, I was denied again.

Had to cancel my appointment 6p last night. At least I didn't have to get up for a 7a appointment. I did get a call today around 12n that after my doctor called this morning, that I am now approved! SO, the pet-cat-scan is now scheduled for June 12, at 2p. Then on Friday, June 15 @ 12n I meet with the Thoracic surgeon to go over everything.

Will keep you posted as I find out any new news.

We put a bid on a cool house in Castro Valley, there was another offer, without the contingencies we had, so they are making a counter offer to the other people. Bummer, but that free's up some brain cells for other life. The timing wasn't great, but it was a great house, one that doesn't come up too often. Since we didn't get this one, I'm sure God's plan for us is amazingly better. It would have been good, but we wait on the Lord, his plans are immeasurably better than any eye has seen, mind conceived...