Lamb Kofta

leaves from two sprigs of sage
1/4 cup pistachios
1/4 cup golden raisins
1 teasp ras el hanout seasoning
2 teasp zaatar seasoning (or 1 teasp sumac)
1/2 teasp sea salt
1 1/2 lbs ground lamb

Chop all ingredients except the lamb in a food processor.  Add lamb and process until combined and shape into elongated burgers.  Grill until medium rare (on skewers if you want, but they work fine without).  Serve with yogurt.

Paleo Chutney

2 lbs apples, peeled and chopped
1.5 lbs pears, peeled and chopped
1 cup cider (I used frozen cooked fresh figs in their liquid instead)
1 cup golden raisins
6 prunes, chopped (because that was how many I had)
1 cup cider vinegar
1 inch square of ginger root, or more, chopped fine
1 teasp salt

Cook apples, pears and cider until they soften some.  Add raisins, prunes, vinegar and ginger and cook until thick, stirring occasionally at first and more often as the water boils away.  This should be safe for boiling water bath canning because the vinegar provides enough acidity even though it doesn't have sugar.

Melanoma update

The healing from melanoma surgery on my upper arm went very smoothly--I had hardly any pain.  I went back to swimming a few days after two weeks on the advice of the lymphedema specialist, and I think my scar may have ended up a little more stretched out and raised than it otherwise would have been, but I didn't lose any range of motion in my shoulder, which is what I most cared about.  And I didn't use the scar sheets to minimize the scar because they didn't stay on as much as I move my arm. I had tightness and cording keep starting up in my arm for the first 6 weeks but I kept swimming and it went away.

Hearing that I had several long plane flights coming up, the lymphedema specialist (occupational therapist) ordered me a custom compression
 sleeve.  She warned me that lymphedema can develop when only one or two lymph nodes have been removed and often takes more than a year to appear.  I haven't worn the sleeve full time, but I wear it for 2-4 hours most days and for air travel.  She says she feels some fluid retention and I notice my arm sometimes feels strange (heavy maybe fits) so I want to be cautious.  I did see another lymphedema specialist (this one a physical therapist) who didn't think I had a problem at all, but she gave me the exercises I wanted to fight cording.

It doesn't feel over because at my 3 month appointment with the dermatologist he removed two moles, one of which came back atypical.  And that one was at the edge of the scar from the melanoma wide excision.  So I had a wider excision of that mole a few days ago. 

It was done by the dermatologist with local anesthesia only, so it wasn't a big deal.  But it is bigger than they had made it sound and hurts more than the first one did.  I think he may have cut more than expected in order to not leave tissue cut on both sides, but he didn't say anything.  My guess is that the surface stitches, which I didn't have the first time, make it hurt more.  They come out after 9 days.

 

It is not serious--there is still no evidence that the original melanoma has spread.  But it does make me worry, make me feel I can't count on my health.

 



Apple Souffle

two apples peeled and sliced
2 tblsp butter
2 tblsp maple syrup
5 egg whites
1/4 teasp cream of tartar
3 cups apple sauce (we used homemade)

Preheat oven to 450.  Cook sliced apples in butter in a deep straight sided saute pan until both sides are browned. Drizzle maple syrup over the apples.  Beat egg whites with cream of tartar until they form medium stiff peaks.  Fold applesauce gently into the egg whites.  Pour over the warm apple slices and place immediately in oven.  Cook at 450 for 15 minutes or until brown, then turn off the oven and leave souffle in the oven for at least another 20 minutes. 

Winter squash au gratin

3/4 cup pine nuts
2 tablespoons melted butter
1 large onion, chopped
2 teaspoons minced garlic
1 large winter squash (3-4 lbs)
1 1/2 cups whipping cream
1 1/2 cups whole milk
1 teaspoon fresh thyme
1/2 teaspoon coriander
1/4 teaspoon mace
Salt and pepper
1/2 cup grated Parmesan

Toast pine nuts.  Melt butter and cook the onion until soft and beginning to brown. Add the garlic and then put aside in a bowl.  Deglaze the pan with the milk. Add cream, squash, and spices and simmer until squash is soft.   Season to taste with salt and pepper.  Preheat oven to 425.

Mix in onions and transfer to lightly greased baking dish. Sprinkle with cheese.  Bake at 450 for 10 minutes.  If it is not browning on the top, turn on the broiler for a few minutes, watching carefully.  Sprinkle with the reserved pine nuts.

From James McNair's squash cookbook, with minor modifications.

strawberry rhubarb sauce for duck

2 cups duck stock (simmer neck, gizzards, half an onion and a stalk of celery while the duck is cooking)
1/4 cup white port or brandy
1 cup strawberries cut in half (or quarters if large)
1 cup cooked rhubarb with minimal sweetening
grated rind and juice of one lemon
1/4 cup cut up mint leaves

Combine stock, port, strawberries and rhubarb, bring to a boil, and simmer until strawberries are soft.  Stir in lemon rind and juice, then remove from the heat and stir in mint leaves.  Serve over roast duck.

Lymphedema prevention

As I feared, I have been caught up in the medical world.  I'm supposed to wear a lymphedema compression sleeve all day every day.  If I want a second opinion, Dawn Modzell at St Francis is recommended--864-255-1987

Good news!

I went for an early followup because I have some lymph swelling and bruises that are traveling down my side.  The surgeon had no concern about those, but he did have the great good news to give me that the lab found no cancer in either my lymph nodes or the wider margin removed around where my melanoma was. 

 

 Pretty good for four days after surgery!

 

He continued to give me as little information as possible.  One example:

• P: Can I please have a copy of the biopsy report?
• Dr. T: Why would you want that?
• P: Can I please have a copy of the biopsy report?
• Dr. T:  Of course, it is your medical record, it belongs to you.

So the whole thing is over now, except for getting a body check twice a year.  I am also relieved  that I can now put salve on the healing wounds, which had started to get itchy.  The stitches are under the surface and will dissolve.

 

I am so thankful for the people who have prayed for me and brought food.  John has not been able to step up and do anything more, though he accepts I can do less.  He says "that's ok" when I say no to something he asks me to do.

 

What I have most learned from this is to put myself first more. To do things while I can.

Surgery went well

Two lines of stitches under the steristrips.  The one on my arm is less crosswise to my arm motion than I feared.  The armpit one is the lymph nodes--the radiation procedure in the morning to identify the sentinel nodes took less than an hour and two nodes lit up.  In pre-op they had to bring in the expert to start the IV, but I don't have a big bruise from the unsuccessful attempt.

When the surgeon came to talk to me before the surgery I reminded him I was a swimmer.  He again said he preferred to have me completely out with inhaled general anesthesia.  I again said unless there was a strong reason, I preferred to have IV deep sedation (they gave me both Versed and Propofol).  He didn't argue, and he took my iPod to play my calming music during surgery (his view was while I would not be conscious, my unconscious would react).  During my pre-op appointment last week I asked the anesthesiologist about whether he was comfortable with deep sedation for the procedure and he said "we do it all the time."

I am so happy that I was able to do the surgery with the deep sedation.  No general anesthesia hangover, no sore throat from the breathing tube.  The surgery was at 1 pm.  I got home around 6 still feeling a little unsteady, but I was hungry for dinner and by the time I was done dinner I was feeling good if I didn't move much.  I woke up early this morning when the pain medication wore off, but Naproxen is all I needed this morning--no pain unless I stretch the arm (which I try to remember not to do).

I can shower once 24 hours have passed, but the instructions are very strong that I am not to put anything on the wounds.  I regret that--I've been convinced by the newer practice of keeping wounds moist.  But I will follow instructions at least for the first week.

Homemade toiletries

I am very happy with my latest batch of homemade salve.  I use it on my feet and hands at night and on my scab.  I had bought a variety of healing oils and butters for some specific recipes (see below) and because I wanted to make a mixed oil for my face.  I also threw in the end of a batch of herbal salve that I bought, which had an olive oil and beeswax base.  So the list below is more a reminder of what I used and a source of ideas than an actual recipe.

I melted together in a bowl over hot but not boiling water:

• raw shea butter
• coconut oil
• mango butter
• kokum butter

The kokum butter is particularly hard and I think will keep the salve solid until the weather gets hot.  If you don't use it or are expecting warm weather, I would throw in a small amount of beeswax.

When I took it off the heat I added (roughly in order of quantity)

• jojoba oil
• liquid lanolin
• niaouli essential oil
• manaku honey
• rosemary oil
• neem oil
• vitamin E oil

I put the bowl in icewater and whipped it now and then with the wisk attachment of my stick blender.  It came out a wonderful light texture and absorbs relatively well for all the heavy ingredients. 

I also made homemade deodorant using the first recipe here.  I figure that will be easier on the stitches under my arm than the crystal mineral deodorant (in spray form) I normally use.

While I'm writing down rough recipes, I want to note the ingredients for my homemade tooth paste, based on this recipe:

• coconut oil
• baking soda
• fizzing calcium/magnesium powder
• xylitol (a sugar alcohol that fights cavities)
• sea salt
• mint essential oil

In the winter it is hard, I have to dig it out with a small spoon to get it on my toothbrush.  But it leaves a very fresh feeling.

(first) decision made

If I'm lucky it will be the last decision.  Since the melanoma on my arm was staged as 1B, I am going to have the surgical oncologist remove the larger area around the melanoma and also the sentinel lymph node(s).  Surgery is scheduled for April 8.  I will go early in the morning for the radiation study that will find the right lymph nodes, then surgery will be early in the afternoon and I will be home by supper time.  I'm blessed with insurance with an out-of-pocket limit that I will quickly exceed, so I don't have to worry about the cost of chosing the more significant surgery, just the recovery time.

Two reasons to decide to go ahead with the lymph node biopsy even though one surgeon said I didn't need it.  First is that removing sentinel nodes really is the current recommended approach for melanomas with depth greater than .75 mm and a second risk factor (mine was .83 and had a miotic rate of 1 /sq mm).  The second reason is a principle for making sense of low probabilities that I learned when I had CVS genetic testing with my first pregnancy: only do the test if the incidence of the problem you are testing for is greater than the incidence of complications from the test.  In the case of sentinel node removal, the chance of finding something is 2-8% and the chance of complications is 1-2% (both according to my doctor).  I am tempted to say that the chance of a benefit to me from this surgery alone is about 4% (calculated on the basis that I have a 5% chance of a positive node and an 85% chance that will be the only positive node).  The risk of significant harm is very low--most of the possible complications are short term.

I realized also why I am so resistant to going with the standard treatment.  When I was diagnosed with diabetes, I quickly found what would work for me.  At the time, the standard for well-controlled diabetes was an A1c between 7 and 8 and a low fat diet--I decided to join the community of tight control diabetics and keep mine below 6 by eating low carb.  It has worked wonderfully for me. I think the standard of care has since changed to A1c between 6 and 7, so the medical community has realized at least some of what a few mavericks and a community of patients reading the research literature understood 10 years ago.

When I started to research the melanoma decision I quickly learned that there is no good treatment for melanoma that has spread and the standard of care does not have much to offer.  Neither of those hit me as a big surprise.  My husband's illness (Multiple System Atrophy, a form of Atypical Parkinson's) has no treatments that actually slow down the disease, they only relieve symptoms.  And my own experience with diabetes was with realizing that the standard of care was lousy.  So I jumped right to looking for an alternative to the standard of care, but it is harder to take those kinds of approaches with cancer because the risks are so much higher.  Thankfully, there is a good chance that after this surgery I will have done all that I need to do.

difficult decision to be made

I made a change and lost the text of this page, so I have rewritten it.  The information is pretty much the same, but I have tried to say it more clearly.

I had a mole removed two weeks ago and it turned out to be a melanoma of depth .83 mm, Clark level III, and mitosis rate 1 per sq  mm--which adds up to stage 1B.  That is a little more serious than the stage 0 ones that some people are lucky enough to catch, but there is a good chance that I caught it before it spread.  The dermatologist took it out with clean margins, but the standard treatment now that the test showed it to be a melanoma is to take a larger margin and maybe check a lymph node or two.  I got two opinions, one from a surgical oncologist and the other from a plastic surgeon who has removed melanomas from several friends, and the two surgeons disagree on whether it is wise to remove and check the sentinel lymph node(s).  I'm going to try to lay out the information as a narrative in hopes that it will help me make the decision.  I'm not looking for advice here, but I would welcome comments about what you would do if it were you, and why.

I saw the plastic surgeon second but let me describe his plan first because it is the simpler one.  He would do the procedure in his office with local anesthesia--lower risks there.  He would remove skin and fat down to the membrane over the muscle in a circle giving a 1 cm margin around where the melanoma was removed.  He would cut a triangular area of skin  and rotate it to cover the hole, and sew that in place and sew together the triangle.  He consulted with three surgeons and oncologists, all of whom said I didn't need lymph node testing because the melanoma was less than 1 mm deep.  His plan is on the left (he marked my skin with something that wore off more quickly than Sharpie so I have drawn on the picture to make his markings visible).

The surgical oncologist (drawing on the right) would make the same cut around where the melanoma was, then cut points on either side and stretch the skin together over the hole.  He strongly recommends removing one or two sentinel lymph nodes; he says I have a 2-8% chance of a positive node.  If I do, 84% of the time no other nodes are positive, so just removing one or two is significant treatment.  He says when he does the procedure it has a 1-2% complication rate.  He prefers to do the procedure with general anesthesia but has agreed to do it with deep IV sedation with propofol.  It is more serious surgery than what the plastic surgeon proposes, but very unlikely to cause long-term problems.

So why not play it safe and have the sentinel lymph nodes removed?  The key reason is that research has not shown it does much good.  It is part of the standard of care in the United States, but the best study showed it resulted in only a statistically insignificant improvement in survival rate.  Some argue that is because only 16% of the patients in the study had positive lymph nodes, and for those who did, treatment improved the outcome only by 10-15%, so the group benefiting is too small to be statistically significant.  But that still says the benefit is very small. The oncologist argued that sentinel node biopsy was worthwhile treatment if it removes cancerous nodes because 84% of the time the only cancer is in the sentinel nodes.  But the best research doesn't show that it improves survival, only that it is useful for staging.  (summary of the research)

My current view is that if I had a positive lymph node, I would not do further treatment.  For stage 3A (microscopic spread to 1-3 lymph nodes) the 5 year survival rate may be as high as 85%  (figures vary quite widely).  The standard treatment is removing all the lymph nodes, but 84% of the time no other cancer is found (it was only in the sentinel nodes).  That treatment causes lymphedema and nerve damage and improves survival by 10-15 percent.  In other words, without the treatment the survival rate would be 70-75%, with the treatment it is 85%.  The other standard treatment is high dose interferon alpha for a year, or as long as the patient can tolerate.  Side effects are feeling like you have the flu, serious depression, and autoimmune diseases, with problems continuing after treatment ends.  Current meta-analysis of studies this treatment do not show any benefit in overall survival.  I don't see losing that much quality of life for a very small reduction of the likelihood of the cancer coming back.  I wouldn't see it as giving up; I would see it as I've got a 75% chance of survival if I don't do anything, it isn't worth long term problems and/or a year of misery to increase that chance a little bit.  I raised my views with the oncologist and he said that he would still follow me if I refused treatment.  But I clearly wouldn't get any support; he would keep telling me that it was his job to recommend the standard of care (at least until there are results from the next big study, which won't be until around 2020).  I can just imagine how confidently he tells people that if they follow his plan they have an 85% chance of survival.  I bet he doesn't tell them that if they do nothing they have a 75% chance of survival.

I don't like either doctor, which is not surprising when dealing with surgeons.  The cancer specialist was arrogant.  He wasn't the worst, he was willing listen to my preferences if I stated them clearly.  But it was clear he would keep recommending standard practice, not support me if I decided on something different (even if I could argue for my choice from the research literature).  I do worry that once I enter the cancer specialist world I will get sucked into overtreatment. The plastic surgeon was the type who reacts to knowledgeable women by playing dumb.

The surgery will be April 8 with the oncologist or April 12 with the plastic surgeon.

Swedish Pot Roast

1 large onion, chopped
1 tblsp fat of your choice
1 tblsp grated fresh ginger
1/4 cup boiled cider
1/2 cup vermouth
1/2 teasp cinnamon
1/2 teasp cardoman
fresh grated nutmeg
1 bay leaf
Beef chuck roast, sprinkled with salt

Brown the meat and onions in the fat.  Add ginger, then boiled cider and vermouth.  Add spices then chuck roast.  Pressure cook for 20 minutes, then let cool slowly. 

Primal Meyer Lemon Pudding cake

This recipe is a modification of: http://www.foodess.com/2013/01/lemon-pudding-cake/

3 Meyer lemons, grated for zest and then squeezed for juice
3 eggs, separated
1 tblsp butter or coconut oil, melted
1/4 cup honey
3 tblsp coconut flour
1/4 tsp baking soda
1 cup milk, half and half, or coconut milk

Preheat oven to 325 and grease a 8 inch square or round pan with butter or coconut oil.  Find a larger pan and start water heating for a boiling water bath.  Beat the egg whites until they form soft peaks.  Beat the egg yolks in a separate bowl until the color lightens and they have incorporated significant air.  Beat in the melted butter.  Beat in the honey, grated lemon rind, and lemon juice.  Beat in the coconut flour and baking soda.  Beat in the milk.  Gently but thoroughly stir in the beaten egg whites.  Pour into the greased pan, set in the larger pan and pour in the boiling water, and carefully place in the oven.  Bake for 50 minutes or until the top is set.

I don't usually notice a coconut taste from coconut flour, but I did in this case.  So don't be afraid to use coconut milk so long as a meyer lemon - coconut pudding cake sounds good to you.  The next time I try it I will increase the coconut flour even a little more--this had a very thin cake layer.

Anesthesia

I just found a useful link for Parkinson's and anesthesia:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3141145/

I'm also going to copy here the information I compiled a couple of years ago for Alzspouse:

The idea that general anesthesia can accelerate Alzheimers is getting close to being accepted scientific knowledge. I haven't seen the full text of the articles, but the reference I would give a doctor is: http://www.j-alz.com/issues/22/anesthesia.html

From my research I compiled a list to show the doctor:

• Least safe: isoflurane and halothane
• Possibly not as bad: sevoflurane is better in some respects, desflurane better still
• Even safer: Thiopental, diazepam, and propofol (though this last showed negative effects at high concentrations)--but be careful because these are often used before something else or for deep sedation, not as general anesthesia by themselves.
• IV anesthesia is generally safer than inhaled (because it is larger molecules)
• Glycopyrrolate, an anticholinergic drug which does not cross blood-brain barrier, is preferable to scopolamine or atropine.

One place to start if you want to do your own research is: Anesth Analg. 2009 May;108(5):1627-30. Consensus statement: First International Workshop on Anesthetics and Alzheimer's disease. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769511/?tool=pubmed

My husband was given sevoflurane, propofol, lidocaine and Fentanyl, as well as Zofran for nausea. The nurse-anesthetist assured me she gave him as little as possible to keep him under, for as short a time as possible. That he was doing so well the day afterwards makes me understand more fully that there are two issues here. How deep and how long the anesthesia is has a big effect, irrespective of the medication used. But I'm convinced by what I've read that which medication is given is also signficant.

I have since done some research specific to Multiple System Atrophy.  There is an anesthesia data book available on Google books: Anaesthesia Databook: A Perioperative and Peripartum Manual By Rosemary Mason. It won't let me cut and paste information but it lists the following risks from MSA:

1. cardiovascular instability
2. impaired pulmonary respiratory reflexes
3. defective reflexes of the pupils, which are used to monitor the depth of anesthesia
4. lack of response to ephedrine and similar medications
5. bilateral vocal cord paralysis