Our Cancer FAQ

What is the diagnosis?

Classic Hodgkin’s Lymphoma, subtype nodular sclerosis, stage 2.  He has swollen glands on both sides of his neck and in his chest.  Diagnosis established in mid March, 2020.

What can we do to help?

I don’t know what our needs are going to be yet, so this list will change with time, but for now:

• I would like someone to come over and do a massive meal prep and cook day with me so I can stock my freezer with pre-made food for the days I will have no motivation to cook.
• Remember that Eirik is still a young man and not just a cancer patient. He is so much more than the disease.  He is already worried about losing his identity to the cancer.
• Take a look at my Rings diagram and understand where you fit. This will help minimize stress on us.
• Don’t tell us how we “should” be feeling. We will be going through all kinds of emotions and cycling through them, I’m sure. The way we “should” be feeling is exactly how we are feeling. If we try to ignore how we are truly feeling, then it will add stress and may have negative side effects later on.
• If we say we don’t want to talk about it, please honor that. This is going to consume a huge portion of our lives for the next several months and we want to be able to focus on other things sometimes, too. If we don’t, we will go insane.
• Please don’t tell me you’ll “pray” for us. I am still slightly traumatized by Christianity, and its language still gives me the heebie jeebies. You can hold us in your thoughts, send us positive energy or love, but please don’t tell me you will “pray” for us, even if you will.  It's just the language that is hard for me, not the concept.
• If you are sick, please don’t come over. I am newly terrified of Covid-19 (which I had no personal fear of until the diagnosis) because chemo will kill Eirik’s immune system and leave him vulnerable to everything.
• For the love of all that is sacred, do not tell us any stories of people you know who have died from this. That isn’t to say that you can’t tell us that you have lost someone to cancer of some sort. Telling us your experiences has the potential to build connection. Telling us other people’s experiences (especially if they didn’t survive) only serves to build more fear and anxiety. We have enough of that already.

Who can I talk to about it?

That depends on what your goal in talking is. If you are looking for updates, you can look here. I will keep all public information about it here. If it isn’t here, then either we don’t know, or we aren’t ready to make it public. If you think I forgot something, shoot me an email. If you are looking for your role, go check out the Rings page.

Did you hear about X treatment?

Probably. Anyone who knows me well knows that research is one of my coping mechanisms. Treatments I have heard about (and therefore you don’t need to tell me) are:

• GAPS diet, ketogenic diet (don’t even suggest a vegan diet to me, I will laugh in your face)
• organic diet
• potassium rich diet
• green beans, garlic, leeks, asparagus
• organic raw colostrum
• meat stock
• raw, fermented cod liver oil
• Essiac tea
• Miso soup
• Just Thrive probiotics
• Catalyn vitamins
• mushroom therapies (Epimune Complex or Immune-Assist)
• Biosuperfood F3
• pancreatic enzymes (Pan-Immune)
• Black-out curtains for better sleep
• castor oil packs
• homeopathy
• Epsom salt baths
• osteopathy
• Astragalus
• Frankincense and Myrrh
• Blushberry
• Sunlight
• Low-dose naltrexone (LDN)
• Iscador
• Strodival (ouabain)
• gemmotherapy
• marajuana/CBD oil

Cast of Characters for Cancer and Covid

Eirik: Main character, diagnosed with Hodgkins Disease in March 2020
Judy: Me, the mom
Ben: My husband
Cait: 23-year-old sister
Moira: almost-21-year-old sister
Lauren: almost-18-year-old sister
Rowan: 16-year-old sister
Adelle: 8-year-old sister
Jenny: my best friend, my kids’ godmother
Uncle Doug: my brother who passed away from complications of cancer June 8, 2018

Rings

I read about this concept in an article recently, but I can’t find it now, so I will do my best to explain it from memory.  I wrote the bulk of this for my family to help them understand and empower them to advocate for their own needs.

The gist of it is that you draw a small circle, and in that circle is the person who is most affected by the crisis. In our case, that is Eirik. Then we draw a second circle around the first one. That represents the people who are closest to him, so that would be us, his immediate family. The next ring contains those who are next closest to him - extended family and his closest friends. Each successive ring of people is more removed from the situation until you have total strangers at the outside edge. When someone is upset, they can complain to and seek support from anyone in a ring that is bigger than theirs. So we can complain to friends and other family, they can complain to their friends and they can complain to people who are strangers to us. Eirik can complain to anyone he wants because everyone is in a bigger circle than his. We may never complain to a ring smaller than ours. Our job as an outer ring is to support and comfort those in the smaller rings. So the rest of us (his immediate family) can complain to anyone we want except to Eirik. No one in a ring larger than ours is allowed to complain to us. They may only offer support and comfort. Comfort in, complaints out. If other people start complaining about it to us, we can tell them that it is not our job to support them, and asking us to do so puts an unnecessary burden on us. Our job is to support Eirik, not our friends. Their job is to support us and if they need to complain, they can complain to someone else. This may be important later on, if our friends say something like, "It is so hard to see him go through this," or anything similarly thoughtless. Like we don't know how hard it is. I will likely get very sarcastic. I’m not trying to sound cold, just trying to manage our energies.

If you don’t know what circle you are in, you are either in ring 4 or 5. Similarly, this is the order in which we will share information as well. Once all of Ring 3 knows, I will make this public.

Center Ring: Eirik
Ring 2: Immediate family
Ring 3: Extended family (blood, marriage, and official honorary), closest friends
Ring 4: Church friends, SCA friends, work friends, classmates, etc. that don’t spend lots of time with us, so pretty much everyone else that we know
Ring 5: People who don’t even know us

I am a phoenix

Okay, so maybe that is a bit of a dramatic title, but it really fits my worldview right now. I'm recovering from a really low point in my life, and I find myself reborn from the ashes. I have started a program about inner work called Be A Beacon. It really came at the right time for me.

We have moved into a much better living situation and are now exploring the opportunities that await us here. We lost our van a month after I blogged about it, so now we only have our little car. It makes traveling interesting, to say the least. We are looking to add a puppy or dog to our family, too. In our new neighborhood there is a family with children close to my own's ages, and they have a very similar parenting philosophy to ours, which is so delightful. It is a real blessing to speak to the mom and have her understand what I am talking about without having to go into lots of background explanation.

I have been putting together a collection of my family's favorite recipes. I thought about converting this to a cooking blog, but I don't think that would really be such a great idea. I have too many other interests and things to talk about.

We found a violin for Moira and she has started lessons at the public school. She started late in the school year so she has been getting private lessons, but she said her teacher thinks she is almost ready to join the rest of the ensemble. I never have to remind her to practice, just to practice things other than Mary Had a Little Lamb. It is her favorite. And Eirik is now going to preschool for speech therapy twice a week and riding the bus. Most days when he comes home again, he is asleep. Poor thing.

I have found a renewed interest in genealogy (shh! don't tell my mother). I discovered it in college, and I got my mom hooked. She has been consistent with it these last 15 years, but it slipped out of my life as quickly as it slipped in, and now it is coming back a bit.

My Geocities website died when Geocities died, and I didn't really care at the time. I still have all my files on my computer, so I didn't really lose anything. I found a new host today, so now I am trying to decide what exactly to do with it. I think I will make it multi-faceted. I will put my traditional astrology course back up, and I think I will put my recipes there, too. Maybe some how-to pages as well, and some documentation of various projects. Any requests?

Fomenting Dissension to Save Jobs

This was written by my brother who is an inmate in the NH State Prison. He asked my mother to send it to all the major newspapers in the state, so I am sharing it here, too, to help spread the word.

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

By Douglas Giddens


Recently the administrative staff at the New Hampshire State Prison, in an attempt to prevent further layoffs, has thrown the prison into chaos. By fomenting dissension and intentionally creating a dangerous and volatile atmosphere, they hope that the increase in violence can be used to support the claim that reducing the number of correctional officers is contrary to the smooth running of the institution and the rehabilitation of its inmates.

During the week of June 15, eighty inmates were moved between units. The three units involved are Medium Custody North (MCN), Medium Custody South (MCS), and Hancock Building (H-Bldg).

MCN and MCS are primarily long-term housing units populated predominately by prisoners who are sentenced to ten or more years, who have stayed disciplinary free.

H-Bldg is a transitional housing unit dominated by prisoners who are new to the prison, transitioning back from a higher classification status, or who have not remained disciplinary free long enough to have earned one of the limited number of beds in MCN or MCS, or those who are participating in a residential treatment program, for which two of H-Bldg’s pods have been reserved.

When prisoners enter NHSP, they live in R+D (Reception and Diagnostics) until they are classified by psychological criteria as Predators, Prey, or Neutral. Predators are those who are more likely to cause physical, mental, or emotional harm on others. Prey are those who are physically, mentally, or emotionally weak and more likely to be subjected to such harm. Neutrals are not seen as being especially predatory or especially susceptible to predators. In school, there were the bullies, the bullied, and those who were neither. This is the same principle.

Once categorized, inmates are placed in appropriate housing units: Predators in MCN, Prey in MCS, and Neutrals in either one, often depending on the nature of their crime or the unit requested by the Neutral.

In H-Bldg, these classified prisoners are placed on specific pods, again based on these same criteria (Echo pod for prey, Foxtrot for predators, and Neutrals on either). Over the previous week, NHSP administration has seen fit to disrupt this equilibrium within the prison community. They have taken 20 prisoners each from MCN and MCS and swapped them with prisoners from the most violent and volatile pod in H-Bldg: Foxtrot.

Those chosen for this move from the long-term communities of MCN and MCS were not necessarily those who were problematic prisoners or disciplinary problems. Although some of these men were not model prisoners, they had not been in enough trouble to be expelled from these units under normal circumstances, and many of those moved were in fact model prisoners; men who had been disciplinary free for many years, who held steady jobs in the prison, and who were respectful to and respected by fellow prisoners and guards alike. Some of those moved didn’t have very much time left in prison and will soon be released. There were also those, however, who are serving long sentences with little hope of ever being released.

The propaganda being spread by prison staff is contradictory and confusing. The answers given by some staff members differ greatly from those of others. Some say the idea was to move troublesome prisoners from earned units, but many among those moved were model prisoners. Some say it was to move short-term prisoners from long-term housing units, but many among those moved had little hope of ever being released. Some say that it was long-term, non-problematic prisoners to “teach the new young inmates how to do time”, but the variety of moved prisoners shows the fallacy of this reasoning. Some ranking prison officials suggest that the goal of all of this is to unify the prison so that there are no “good” units and no “bad” units, so that all live in relative harmony. This idea, however, is contrary to all psychological patterning and has been attempted before by this prison with disastrous results.

The fact is that the moves were arbitrary. Model prisoners were whimsically moved for no better reason than that the Unit Managers felt like it. The whole idea behind these moves is to mix the predators with the prey and incite violence in an effort to justify the necessity of having so many unnecessary guards.

Before these moves, the most problematic prisoners were consolidated on Foxtrot where correctional personnel were able to keep a close eye on them. This arrangement, keeping these men under close supervision, allowed officers to prevent many problems and intervene quickly when necessary. Since the moves, these most problematic prisoners have been distributed throughout the prison population and, without the needed supervision, they have been allowed free rein to extort, abuse, and steal.

The first week alone saw more thefts and assaults than were perpetrated in the last six months in these units. The results speak for themselves; one prisoner who has had only one disciplinary infraction in 5 ½ years, and that 3 yrs ago, who is unlikely ever to be released, cut his wrists. He was found with massive blood loss over three hours later and was rushed to the hospital. Another prisoner was reassigned to Foxtrot where it was well know that he had enemies. Another man was attacked and brutally beaten by a group of gang members. These are only a few of many such incidents and, in addition, the prisoners were refused communication with mental health professionals who could have helped to ease this transition.

Are the prison administrators such sadists that they would knowingly and willingly endanger the lives and safety of so many men? Are those charged with the safety of these prisoners so desperate to prevent layoffs that they would sacrifice so many lives to achieve this goal? Do we really want such ruthless and inhumane people in charge of the safety of our state prison population?

Mmmm... Gardens

Well, we are forgetting about moving for now. It is very hard to find a place large enough for a family of 7 that falls in our price range of 1200+ utilities, AND that will accept Section 8 rental assistance. Most people's reasoning for not accepting Section 8 is that it won't pass the safety inspection. Why are they renting it out if they know it isn't safe? The one place that I was certain would pass (it had just been repainted - the biggest failure in the places we looked at) just flat out refused to consider it. I cried for a couple of days after that one. The house was perfect for us - 3-4 bedrooms, 1 1/4 bathrooms, full basement with W/D hookups and an area that was begging to be filled with shelves for food storage, a fenced in backyard, a formal dining room to fit our monstrous table, and still within easy biking distance of downtown on a dead end road. So yes, I cried. We have since given up on moving out of the project for now. They have also pushed back the start of construction here, so now instead of March 1, they are *hoping* to start by June 1st. The up side is that most of the people we truly don't get along with have either left or are on their way out. Having obnoxious neighbors is one thing, but believing they are dealing drugs in another matter entirely. I don't know why no one has been arrested over there yet, but I have been assured that they are being evicted and they agreed to it in court, so they can't change their minds now.

All this leads up to this post. Since I am staying here, I can plan my garden for here. I got my seeds from High Mowing Organic Seeds (on Sharon's recommendation) yesterday and have been planning and replanning my garden. I now have a schedule for my starts and plantings that I don't suspect I will change anymore. I had done a nice schedule based on our frost date and how long before that each plant is supposed to be started indoors. Then I saw Matt mention that he had done some planting based on moon phase, so I decided that I needed to schedule mine all over again. Now it all laid out on the little generic calendar I printed out for this purpose based on moon phase. That means I fudged a little on my frost date, but I dont' think that will be a significant issue. For example, one of my plants says to start indoors 5-7 weeks before the danger of frost has passed. The last frost date in my area happens to fall almost on the new moon in May, which is perfect for putting plants in the garden. Since I am not sure if the moon phase applies to starting seeds or putting them in the ground or both, I opted to start them inside 4 weeks before and and put them out on the new moon. The other option was direct seeding after frost. My first plants will be started this Friday. I panicked for a little while yesterday because I couldn't find the peas and lettuce seeds I had saved from last year. I hope they are viable, since I have never saved seed before. But I want to start my lettuce on Friday and I couldn't find the seeds! I searched everywhere I could imagine I might have put them. At the end of the day I found them packed up in a box labeled "Gardening stuff". Imagine that. :)

Since I can't put much in the ground for two more months, I am sure my layout will still be changed up before then. But soon I will have little greenies growing in my house. Hopefully the cats will not try to eat them. Yay!

About cars

Crunchy Chicken posted today about whether higher gas prices are a good or bad thing.

This is a tough one for us. Our "family car" is a 94 Chevy Astro van that we bought used 10 years ago. It gets about 20 mpg in the summer. At that time we planned on having a big family and would be needing the room. That indeed happened. We have 5 kids, so the 8 seats in the van definitely get utilized. At one point, we had 3 kids in car seats, though we are down to 2 now. We also have a 180-mile round trip every other week for visitations with my oldest daughter who lives with her father. This was murder on the pocketbook.

Last year we used our tax refund to pay cash for a used 99 Mazda Protegé. The gas mileage (when it is only being used for the trip to get my daughter) is around 35 mpg in the summer. Winter is harder on the gas mileage since we have to leave vehicles to warm up (especially the van) before we go anywhere or else the cars complain.

The Mazda only has 5 seats. It won't fit our whole family, so if we go anywhere as a family, we have to take the van. The van is going through some trials right now (over 200k miles on it), and we are trying to decide if we should keep putting money into it and hope it lasts as long as we can afford gas, or if we should replace it. But with what shall we replace it? Financing a $20k hybrid car is completely out of the realm of the most remote possibility. I suggested an old station wagon, the kind that has the extra back seat that flips up and faces backwards, but I haven't seen one of those in, well, probably decades. My husband suggested a small pickup truck. Yes, it would mean we have to take both vehicles to go somewhere as a family, but really, we don't make long distance trips as a family very often. He also said that when gasoline is prohibitively high, we can pull the engine out and convert it into a horse- or ox-drawn cart. I don't know how plausible that is, but it is intriguing. We shall await the prognosis on the van right now.