Happy New Year!

I sit here, having just rang in the new year with kisses and good wine listening to Auld Lang Syne. And, as I do, I looked up the lyrics and the meaning behind them and explained it to my husband. My son and daughter are still up and happy, and my girlfriend is sitting beside me typing away. It doesn't get much better than this.

I am so happy! John McCain has called Barack Obama and conceded. I was there when he announced on that cold day in February in Springfield, and backed him since that speech in 2004. I think we have a leader. I will miss him as a senator.

I voted, as did Kelly. She'll take Vernon once Loren is off to school. Well, I was there when he announced on that cold February morning. It is nice to see such pleasant weather today. There was a 20 minute line at 6:15 am.

hanging a door is hard

Today we hung a door. Getting the job done was a whole family effort. David did not do much work, it is true, but he was very cute and that helped to inspire us to keep going. Loren did much picking up and gophering. Vernon provide meals, advice, humor (often at the same time as advice) and did major demolition. Kelly did the wiring and rough carpentry and I did design, finish carpentry, and much trimming. I cut bead board Friday and Saturday, and today, I chopped the studs to length and mortised the hinges and generally assisted in getting the door hung.

Mortising hinges without a jig is fiddly. I marked the layout with exacto knives. Then, I used a laminate trimmer with a 5/16th inch straight bit to remove most of the stock and finished with an exacto knife and a 1/4 inch chisel. I sharpened the exacto and the chisel between mortise with an extra fine diamond whet stone. I love not needing to find the oil. I love how fast the material is removed, and I love how quickly I can get a sharp edge. There is a reason experts use jigs to layout and to mortise. It took us all day to get that door up.

We are redoing a bedroom in an addition to a house originally constructed in 1938 or 1940, depending on which documents you believe. Noting is square or plumb, except our new door and the wall it is in.

Can't breathe

Breathing is not overrated. With every breath I can feel stuff shifting around my lungs. Sometimes, I cough it up. I feel weak and I can't concentrate.

Obsessing over blood pressure

I am sick, I have been fighting bronchitis since before memorial day. Last Thursday at 4:00 pm, just three days after finishing off antibiotics, it flared up so bad that I decided to go back to the doctor. I hate going to the doctor. I have not gotten a primary care doc since we moved. I hate vetting a doctor.

I have an allergist and an OB/Gyn, and since I don't currently have any other health issues I want a doctor to monitor, I have not been in a hurry, mainly because I am obese and healthy. I don't have high blood pressure, diabetes, etc., which is very hard for some doctors and even more nurses to understand. I will likely get diabetes, but high blood pressure is not so likely with my family history.

It is dangerous and unpleasant to be treated for high blood pressure when one doesn't have it, as I have seen with my mother and husband. Both have chronically low blood pressure and are overweight. He often has high blood pressure when it is measured at the doctor's office because he is in so much pain from the trek to get to the doctor, and from fibromyalgia generally, but if his blood pressure is measured early in the day it is low, 105 over 70 being fairly typical for him and it gets lower at times. He also has a heart rate of 50 or so too and a cholesterol level of ten. To many doctors, this is offensive. How day a 300 pound man not have high blood pressure! And ten must be a test error! The highest they have ever measured his cholesterol is 32. He new the test was coming and he ate eggs every day to try to get the number up. Recently an idiot from the VA gave him an alleged migraine preventer which has a primary purpose of lowering blood pressure. Vernon told him that he struggles from low blood pressure, not high, but the doctor convinced him to try it.

The next morning, I could tell something was seriously wrong. Fortunately I was working from home that day, trying to fight this damn bronchitis. I made him call the doctor's office. He said he felt light headed. He appeared sluggish and his speech seemed mushy. The nurse was alarmed and advised him to drink lots of water and if it did not clear soon, I was to take him to the ER, as it seems his blood pressure may be "crashing." The water seemed to help. It took until late the next day for him to get back to normal. Not all doctors in the VA are incompetent, and a week after the incident someone finally read the pertinent parts of his chart, and called to apologize for letting the other, more senior doctor nearly kill him by prescribing that medication.

So, I sit here temporarily feeling nearly human from having taken a whole slough of pills. I thought I was going to fell better today, but no such luck. It feels like I will be going to sleep soon, so maybe that will help. At least my blood pressure was convincingly normal at the allergists office. The time before they told me I had high blood pressure and had in my charts a blood pressure of 180 over 120. I don't recall it ever being read that high, so I wonder where they got that reading. If it reads over 140 over 80, I usually make them take it a second time and pay attention to the cuff size and position. I have never had two consecutive high readings when I felt ok. Readings like 115 over 65, 120 over 70, which are the last two readings, are typical for me. They have backed off on the high blood pressure nonsense once more.

Now I wish I could get this bronchitis to back off.

No Pants for David, please

David had another MRI on Wednesday. This one was full head and spine. They are looking for tumors along the optic nerves and auditory nerves, as well as monitoring how his other tumor's are growing. It has been hard not to focus on all that could go wrong. It is amazingly difficult to stay balanced, getting the tests, monitoring all that needs to be monitored, but not letting it dominate our lives.

Yesterday we went to the pediatrician for a normal checkup for both Loren and David. Both are developing normally. Loren was very brave through all four of her shots. The appointment was at 7:00 pm, so we got home quite late. Apparently David fell sound asleep after eating and before we got him into pajamas but after we removed his trousers. This morning, I noticed him lounging with Vernon in his polo shirt. I asked David, "Boy, why aren't you wearing your pants?" He loudly declared, "I hate them."

Bacon and Bad Grammar

The following statement, "her and I forged an alliance...she is my nemesis" was typed in IRC. Let's look at this gem. I will let slide the lack of initial capital letter and ending punctuation, after all, it is IRC. Even so, it has at least three strikes against it.

Strike one is the use of her as a subject. Strike two is the use of a malformed ellipsis where a semicolon would be appropriate. The third strike is where it really goes all Belgium. The third strike is for using a word which does not mean what the author thinks it means. Who strikes an alliance with a nemesis? If you can ally with them, they are not your nemesis. I am not opposed to using multisyllabic words borrowed from other languages, < insert lame borrowing such as au contraire >, but this really stands out as a non sequitur.

Which brings us to Bacon Candy. Not since the ambrosia which is caramel bugles have I tasted such a delectable mating of salt and sweet. Here is my recipe for the carnal confection:

Lee's Bacon Candy

• 75 grams of light brown sugar
• 2 to 4 tablespoons small pecan pieces
• 5 strips of thick sliced hickory smoked bacon cut in half
  

Set oven to bake at 350 F. I say bake because you use a broiling pan and so you might think you broil it. You don't. The broiling pan is so that the excess fat will drain away leaving only crisp delicious fat. Mix pecans and brown sugar in a shallow baking dish. Coat the bacon in the brown sugar and place gently on the broiling pan not touching any of the other pieces of bacon. I accomplished this by setting a piece of bacon on the brown sugar and pecans and pressing it down with a fork and then carefully turning it over and pressing to coat the other side. The more sugar, the better.

Bake for at 350 F 20 minutes and then turn over each piece and bake at 350 F for another 10 minutes. Do watch closely near the end, the idea is to caramelize the sugar, not to blacken it completely or set it on fire.

It is delicious when eaten while it is still warm. It made a nice appetizer for the four of us before our dinner of teriyaki rib eye, asparagus, and potatoes au gratin.

Pathology report shows no malignancy!

Pathology report shows no malignancy! This is not a repeat. The one previously was for David, this one is for me. I had a lumpectomy last week and just got the results today. I would wish that I never will face this waiting for results of a biopsy again, but he has nf-1, so that is a futile wish, my hope is that answer will always be a accurate, "Pathology report shows no malignancy."

'08ama

And for the record, I support Obama for president. I have even donated money to him. I encourage everyone to vote for him. He has done well and good for Illinois and I am sure will do the same for America. He thinks. Unlike some candidates and apparently office holders, he has actually read the constitution. He gets things done. As we saw with the legislation mandating videotaping police interrogations in Illinois, he can work with all sides to meet in the middle to make a compromise that actually does what needs to be done.

Land of Opportunity for Some

Cyde's post got me thinking.

As I was waiting to talk with the geneticist, I was reading my family history. My great-grandmother and great-grandfather, when they were first starting out, traveled to do agricultural work. Through hard work and savings, they went from traveling farm worker to farm and business owners and were comfortably middle-class by the time I was around. I have no doubt that such a change would have been far more difficult for a black couple starting out in similar circumstances.

They lived in Arkansas, back in the days of segregation. When I visit there, my family still tells stories of the day the black guy's truck broke down and Arlie helped him out. The remarkable part of the story is that, as far as I can tell, black people were rare in that part of the state (and I am sure not welcome), and he acted like anyone white would act, getting in the front of Arlie's truck with Arlie and all. He was from the North and apparently did not know "better". In general their reaction to this happening is, "It was odd."

I don't think a black couple would have found it feasible to buy the property that my grandparents did. I don't think they would have been permitted to prosper in that place for no reason other than their race. Today, while things have obviously improved, racism is not dead. While a black couple would be able to send their children to the same public school as everyone else, the father still have difficulty hailing a cab. This might seem trivial when compared with lynching; it makes me wonder what else they face.

Individuals have a lot of power in our society. I once offended an admissions officer for a college by objecting to his saying to me, in public, "So, how does it feel to be married to a cripple." Although I met all admission requirements, and qualified for full scholarships based on my good grades and other factors, I very nearly did not get to go to that school because the admissions officer did not like me. His office repeatedly lost my letter of acceptance. It took my husband's working his other contacts in that school to get me in, and then it was almost too late. The admissions office never officially objected to my admission as far as I know.

I see no reason he could not have done the same if he had wanted to exclude blacks. If no one pays attention, racists can do these petty little things and destroy lives with no one the wiser. The study mentioned in this article makes me wonder if mandatory diversity training is showing closet racist how to get away with discrimination.

Pathology report shows no malignancy!

So a very nice acquaintance of mine, on hearing of the latest of David's condition, said, "It is a test, you just have to look at it as a test." I tried to acknowledge her comment politely and move on, but she elaborated telling me that this was a test from God and I just need to have faith. I do know that the remark was meant kindly, but I can't wrap my head around it at all.

As it happens, I do have faith. After trying to be an atheist, I gave up. I caught myself refraining from talking to God, or rather, trying and failing to refrain from doing so. I gave it up as a lost cause. I believe in God. I also believe you can't prove God's existence. I don't believe this is due to anything to do with God, but rather, simple logic. Being all powerful doesn't sit well with the three basic laws of thermodynamics, which are:

You can't win
You can't break even
You can't get out of the game.

As I see it, God is outside the normal system. He can do anything, including defy the laws of physics, so why bother to try?

In any case, I don't see what this is a test of. It makes it seem like God is the ultimate insecure sadist, who needs proof of your love after he tortures you. In a human such behavior would be rightly perceived as reprehensible. I suppose people don't hold God up to the same standards.

And what is the correct answer to this test? "Thank you Sir! May I have another?"

David is sleeping in his cradle. He came home last night after a much simpler surgery than we had feared he would have. He did not get a port in and the surgeon was able to get the material needed without going through the muscle layer. Even immediately after the surgery, the mass looked much smaller. Now that the swelling has gone down it looks even flatter than it did last night. It looks like she removed a lot of material.

The surgeon reported that the mass looked like a regular plexiform fibroneuroma with grey nervelike tubes going every which way. We should get the pathology report in the next week.

It was bit of a trying day. The surgery was scheduled for noon, but the one before him went long, and then there was an emergency surgery right before his. David was very good despite having nothing to eat since 9 am, and nothing substantial since 5:30 am. He charmed the nurses as usual and even napped a good bit.

We met with the neurosurgeon last night. He said that the mass near David's spine has not penetrated the dural membrane and has not begun to put pressure on his spine, so he doesn't want to remove it yet. He wants David to have another MRI in three to four months to see how fast the mass is growing.

So that means the surgery for tomorrow is going forward. I think it will be a biopsy of the mass near his spine. It is very near the surface and big enough they don't have to get particularly close to the spine to biopsy it. I think they are still planning to install a Hickman port as well. I was reading about that. It seems they might order chemotherapy even if the mass is not cancerous. Chemotherapy sometimes is used in neurofibromasis-1 to shrink benign tumors.

The neurosurgeon tells me that he is most concerned about the mass in David's abdomen. His feeling is that it should be biopsied separately. He worries that it is different from the mass near his spine. There is a possibility the mass in his abdomen represents something wrong with his lymphatic system or his adrenal gland.

The neurosurgeon reiterated that since the most common forms of cancer has been ruled out pretty much, that if it is malignant, then it is something that is exceedingly rare.

I talked to the surgeon who is supposed to do the biopsy on Friday. She, the neurosurgeon, and the oncologists should be having a discussion later today on how to proceed. The main question is if there is sufficient cause to biopsy both masses. I understand both sides of the question, and both answers scare me. I really hate taking a risk that they are different, but the surgery to biopsy the deeper mass is far more invasive.

I would be less worried about the masses being different, but Kelly's boss's wife has two different types of breast cancer, one in each breast. That really drives home that the possibility that they masses could be different may be small, but it is not zero.

I called the neurologist and his nurse called back. The urine and blood tests show no factors associated with malignancies. She confirmed this pretty much rules out a neuroblastoma, which is good news. It still could be malignant nerve sheath tumors or some other form of cancer. Even being a benign plexiform neuroma could mean some pretty awful things. I read about what this could be and what it could become and it is overwhelming and horrifying.

But David is oblivious to all of this. He is now sitting on Vernon's lap and playing with Loren. She is tickling him and he is trying to tickle her.

More news, some good news

Test results for his urine test were all within normal ranges. I think this means he doesn't have a certain type of cancer, but doesn't rule out other forms of cancer.

Then one day we noticed what looked like a purplish and red raised rash on his back while we were bathing him. I thought it was skin irritation and the next day it seemed a bit better: a lot less intense in color and only slightly raised. Then his next bath, we saw that it was worse and not at all better. So, after freaking out a bit, I looked up rashes, because the thing looked more like a rash than anything else. It did not meet the criteria for an ER visit according to the websites and so we made a doctors appointment. It was nearly a week away, but that was as soon as his pediatrician would see him. There was nothing to do but wait and fret.

I should back up a bit. When he was quite small we asked about his many cafe au lait spots at a well baby visit as were told they mean nothing. We took him in at four months because he was stronger on one side than the other. We were told that it was likely from him prefering to nurse on one side, and no further tests were needed that he would grow out of it soon. No follow up was needed.

Well, the pediatrician took a look at the lump and jumped back and said, "EEUUuuuchhh!" She then began interrogating us about his care. She stated that she thought this was directly due to trauma and grew very cold toward us refusing to consider or discuss any other possible causes and did not suggest any treatment. She called her nurse in and had her take pictures. She advised us to get an ultrasound and an x-ray. My understanding is that she thought the raised purple spot was from us beating David and the discoloration and swelling were due to bruising. I was horrified at the accusation and horrified that it might sidetrack treatment.

We did our best to make her understand that he had not been through any "trauma," that no one had beaten him, nor had he fallen, and that the diagnosis did not make sense because the spot had not changed in appearance for over a week; if it were due to a trauma that we had not noticed or were lying about, the appearance would have changed since making the appointment. In my experience bruises change color. We did get her to alter her diagnosis from "trauma" to "mass." While it raised ugly possibilities, it was far more accurate than trauma, and would, I hoped, bring the right kind of attention to him.

It struck me later that had she believed that it was a bruise, she should have done a complete blood count(CBC). Unexplained bruising was the first symptom of the leukemia that killed my grandfather. Not only did she misidentify the mass as a hematoma, she failed to prescribe tests that would be prudent for any unexplained hematoma.

So, we took him to get an ultrasound. I think it was that day, possibly the next. David was cheerful and liked the tech. He cooperated and the tech quickly confirmed the mass was visible on the ultrasound. To my horror, the mass penetrated the muscle wall and went far into him. She called in a pediatric radiologist. The radiologist imaged the mass for a long time but was unable to determine the depth or extent of the mass. Then we had him x-rayed. She said we should see a surgeon. She gave us a possible diagnosis of hemangioma, but said that it would require further imaging to determine what it is.

At that point I felt numb and was not thinking clearly at all or I would have asked for a referral. I did try to get a referral to a surgeon from his pediatrician, but she refused to so much as name a name until she reviewed the final radiologist report and saw him again in the office. We called the radiologist and she referred us to a pediatric surgeon, saving up several days, for which I am grateful. We then got an appointment very quickly with the surgeon. The surgeon prescribed an mri and suggested we get an appointment with a neurosurgeon as the mass was near the spine.

After she had examined him and told us she wanted us to get an MRI, I asked if the mass looked to her like it could possibly be due to trauma. She said that was not something she had suspected, nor had the radiologist. It did not look to her like a bruise, and there were no signs of trauma that she could she, and none had been reported by the radiologist. She seemed baffled that anyone would have suspected that given the appearance of the mass.

The mri was scheduled and rescheduled and finally took place the day after Christmas. The results were not conclusive, but it does look like the mass is not a hemangioma. The appointment with the neurosurgeon is for January 9th. As a result of the inconclusive MRI, the surgeon suggested that we check David into the hospital Friday, December 28th to get a CAT and other tests and see a variety of doctors.

We did. The admitting doctor was an oncologist. He was a trooper. Even though he had been stuck multiple times, he was calm and happy for the CAT scan and did not need any sedation, and so we got to go home that night. We were there first thing in the morning, and by 10:30 pm he had been stuck by needles 12 times, had blood and urine tests, and a CAT scan and were allowed to leave.

While we were there, he was seen by a geneticist. On the basis of his nearly 20 cafe au lait spots and three freckles he has been diagnosed with neurofibromatosis-1. The mass has still not been fully identified, but the leading contenders are plexiform neurofibroma, neuroblastoma, or malignant peripheral nerve sheath tumor (MPNST). The only results I have from the tests is that the CBC was normal, so it looks like he does not have leukemia.

On top of all of this, I go into have a lump removed from my breast on January 24. They will sent it to pathology to determine if follow up treatment is needed.

No news was good news

It has been a while since I posted. I had a beautiful boy last May. He was born May 9th, by c-section. I chose that day because it is the birthday of a good friend of mine. He was born by c-section because he was breech and he was likely breech because he had a cord wrapped around his neck 3 times. Nevertheless his APGARs were 9s and we went home early. He weaned himself at 5 and a half months after exclusively breastfeeding since birth. He is happy and talkative, and easygoing.

He started talking the day after he was born. He said “No!” to some unwanted attention from the nurse. He continued to say no when appropriate and added “Yep!” to his vocabulary his first month. I took the “No” and happy coincident which we did our best to reinforce. That seems less likely for “Yep!” but plausible. Since then he has added milk, Mama, Daddy, Loren, Kelly, I love you, I am wet, I do not want, thank you, caterpillar, ola, hi, hello, now, and most recently, bacon. He is definitely communicating verbally.