MM – March 03,2016

HI Folks,

I have been quiet for a while due to being in hospital with Influenza B. It took a serious toll on my poor immune system, affected my kidneys and left me with little to no motivation. I thought the lack of motivation was due to depression. But I have come to find out that kidney function affects a great deal of behaviours in the brain and that my lack of will power or motivation is low because my kidneys are compromised from the disease.

It has also made it impossible for me to go back to work even part-time with the lovely folks at ART KNAPP Plantland.

image1

I have been learning a lot. It’s not an easy thing to do, learning, when your whole body, brain included, is feeling tired, drained all the time.

I sit at home many days and “do” very little. I have people who try to motivate me some and usually I am very self motivated but even the things I really enjoy to do, take alot of effort and I don’t get very far when I am only functioning for a few minutes at a time. As a result most things take a long time to see any progress or don’t get done at all.

Which is very frustrating for me. As demonstrated in other posts on this blog, I have always worked and worked hard all my life. So much so, that I have only ever had 1 vacation (for 3 days in Disney World, many years ago).

Since I started the GO FUND ME https://www.gofundme.com/cyntht program, I’ve had a varied response. Some people are very supportive. Some people suggest I just want a vacation in Spain. I don’t find that particularly funny, since my life is on the line here and all the cancer clinics cost US$20,000 to $30,000 for treatment (and they don’t offer a good time). If I wanted a vacation I could go to Mexico on the cheap, I suppose, but that is not my focus. I’m just trying to survive.

When I started the Go Fund Me campaign I calculated the costs at that time (October 2015). Since then the Candian dollar has dropped significantly and costs have increased everywhere. So my original estimate of CAD$20,000 is actually closer to $25,000 and that is just for the treatment and air fare.

Meanwhile, since October, I have embraced as much of the Budwig protocol from home as possible. This results in a special toxin free diet of primarily organic foods, including lots of fresh fruits & veg, that can be made into juices and smoothies. Plus copious amounts of flax oil, colloidial silver, curcuma 100, magnolia oil, cannabis oil (pheonix tears) and other alternative treatments such as, acupunture. The wonderful folks from Purica have gifted me with Immune7, Recovery and Adrenal Support (mushroom therapy).

I have recently been advised to add milk thistle, mistletoe & frankincense to my regime. And I am researching further for things I can do from home. Other than the mushroom therapy, it all costs money.

organic-food-beaufort-herban-marketplaceI’ve used the donations already given for food and other treatments here at home, so I would still need the full CAD$20,000 to go to any cancer clinic. I am just hoping folks can continue to offer me something, as I cannot even continue what I am doing from home unless I continue to get help.

I have explained previously that any of the money I had saved from my working career, is now gone and I have incurred considerable debt on top of it. I am trying to live on a Disability Pension which gets topped up by Social Assistance. (CPP $760./month and SA adds $300./month) That’s all I have to work with and it is not enough to pay for my basic living requirements (rent, utilities, vehicle repairs/insurance, etc.).

I don’t think a lot of people realize that many treatments are not covered by our provincial medical plans.  (It’s different in each province) The general assumption is that ALL our medical care is covered by Medical Services but that is not true with something like this disease. It is only partially covered. Some of the chemo drugs cost $2000 for one dose.

What is a person supposed to do when the best of the medical professionals in our system say they can offer nothing else to help you fight this disease. When they have prescribed the most aggressive treatment possible and it doesn’t work. Just lay down and die??? I am so tired of this fight that some days I feel that might be the easier choice.

stem-cell

Stem Cells

Unless a large benefactor comes forward, I will not be going to any distant cancer clinics, anywhere. Right now most of the money I have received via donations, has been used towards treatment here at home and there is not enough to make the trip to the Budwig Cancer Clinic in Spain or any other clinic.

I am not winning this battle. My latest blood work shows only rapid growth of the cancer cells throughout my body. I am so full of cancer right now it is 6 times worse then when I was first diagnosed in March of 2014.

So my appeal for help continues. The Go Fund Me campaign will continue, although it is more practical if money is sent to me directly as the Go Fund Me takes 10% off the top of all donations.

Any funds can be sent in an Email Transfer to my cyntht@hotmail.com account. Please believe that every penny is being used and is very much appreciated.

Happy Living!

Cynthia

The Messy Shepherdess

Multiple Myeloma is back

Hi Everyone,

As my followers know, I have cancer, Multiple Myeloma.

I have 2 young adult daughters and a young grandson. I am only 56 years of age. I have been an organic landscaper and farmer for most of my life. I have raised my family on Salt Spring Island, BC for 20 years and recently moved to Surrey in close proximity to the Fraser Valley Cancer Clinic.

Cali & I

Cali & I

The doctors have done everything they can and I had a brief remission. But it’s back now and growing fast. The doctors can’t offer me anything else. At the rate it is growing I have about 6 months. I am already feeling the effects of the cancer and will soon be incapacitated. The only recourse I have been able to find that offers any hope is to attend the Budwig Cancer Center in Spain and hope they can slow or stop the progress. They have had a 49% success rate with my type of cancer.

I have no money left, as a result, I have started a GO FUND ME campaign https://www.gofundme.com/cyntht

The $20,000 will cover air fare for myself with one daughter and two weeks at the center, where I will be given treatment and learn how to continue that treatment at home.

There is no time to waste, so I am urgently appealing to you to help fund my trip to Spain and the Budwig Cancer Center.

Even if I don`t reach my goal, any funds I receive will be used towards treatment of my cancer or to help alleviate the expense of burial for my daughters.

me n flare

Thank you for taking the time to read this. Any and all help will be so very much appreciated.

The Messy Shepherdess

Cynthia Tupholme

MM – February 25, 2015

An overdue update.

I am feeling much better. Been slowly recovering over the past few months and have improved significantly. I am not currently taking any form of cancer treatment, other than monthly blood-work to monitor for any problems that might arise and Pamidronate IV, to strengthen my skeletal frame. My kidney function is good. I was taking medication for the neuropathy in my feet and although it isn’t completely gone, it has improved enough to stop taking the medication. I still get some swelling, soreness and tingling in my feet but that should improve as the nerve sheaths grow back.

When I had my first follow up with the specialist after my treatment from September, I was advised to get updated on ALL vaccinations again, along with Flu vaccines and Hepatitis shots, because the cancer treatments would have depleted all of my former antibodies. However, instead of signing up with the public health nurse for a complete vaccination regime, I decided to ask my family doctor to arrange for a Titer test. This is a simple test that is done using a blood sample to determine what level of antibodies to common diseases you may or may not, have in your body. I have seen and heard of too many side effects, which can on occasion be very serious, occurring from unnecessary vaccinations or over-vaccinating.

Rubella particles digital art by Russell Kightley

Rubella particles digital art by Russell Kightley

Don’t get me wrong, I am not what is currently being referred to as an Anti-vaxxer. Vaccinations can serve a very beneficial purpose in protecting the body from common diseases, however, they serve no purpose and can often be very detrimental to the immune system if there are already sufficient antibodies occurring in the immune system. A Titer test can determine whether a vaccine is necessary or not. I would highly recommend it before subjecting anyone, including infants or youth, to vaccinations. It takes the guess work out of the equation because then you know for sure whether you are at risk or not. And as for the Flu vaccines, if you are generally a healthy person, eating well and getting exercise, I do not think it is wise to prevent your body from naturally fighting off any colds and the occasional flu that might be around. (Most 24 hour flu bugs are not caused by influenza at all, but are typically bouts of food poisoning.) However, I do think the pharmaceutical companies are enjoying quite a profit from the promotion of these Flu shots.

In any case, the results from my Titer test showed that I still have all of my immunities, so it is unnecessary for me to get vaccinated again. The exception was Rubella, aka German measles, which is usually one part of what is commonly referred to as the MMR vaccine (measles, mumps & rubella). If I can source a Rubella only vaccine, then I will get it, but I am not in a big hurry as I don’t plan to travel to any third world countries so I think my risk is minimal.

Oh! And my hair is growing back. I probably have about a half inch of hair on my scalp now 😀 I still wear a hat because my head and ears get cold!

I am slowly getting back into the swing of things. I have started back to work, part-time for now, to see how well I adapt to working again. I have missed working and interacting with other people, (those who are not Doctors or nurses). I probably wont be posting much more about my cancer, unless I come across something interesting or my current health takes a dive.

Happy Living!

Messy Shepherdess

MM – October 05, 2014

I am sorry that I have not been able to write anything for awhile, however, I did loose most of September from being in the hospital and although I am home now, I am still very weak physically and will take some time to build muscle and get my immune system working again. I have to be careful for the next couple of months not to expose myself to too many germs or I will get very sick as I don’t have a lot of resilience to fight things off.

About the middle of August I lost most of my hair. I still have these wispy pieces that need to be cut off so I wont look like some mad professor but for all intents and purposes I am bald now and wondering how long will it take to grow back?

In order to facilitate the next phase of treatment I booked a room at the Cancer Lodge near the hospital and the out patients unit called the BMT Day Care. I was advised that the Lodge had a nurse on staff and could help keep an eye on me as an out patient during the treatment. However, I found that they were not of much help at all and it turned out the only advantage was its convenient location near the hospital.

My Stem Cells

My Stem Cells

At the end of August I went in for the Hickman line catheter insertion, which went well. It is treated like a surgical procedure but they only use freezing in the areas they cut to insert the catheter. It really didn’t hurt and once the freezing was gone I didn’t feel the catheter inside me but the concept still bothers me as being very invasive and I was glad when it came out but that wasn’t for over a month. The removal involved just pulling the line out so it was simple and only hurt a little.

The next day, through the Hickman Line, I received the 8 hour treatment of chemotherapy. Melphalan. The following day, (I was already feeling the nausea), I received the stem cells back that had been collected earlier in the month.

I was required to go to the BMT Day Care every other day to be monitored and for symptom management. However, I immediately started to vomit every couple of hours and have diarrhea (caused by the Melphalan). All of this vomiting and diarrhea causes the body to loose fluids and become dehydrated. Along with the fluids the body looses a lot of essential nutrients including potassium and magnesium which is crucial for kidney function. I couldn`t possibly drink enough or keep down all the pills they wanted me to take to help control the symptoms, as a result, I became critical very quickly. They had to admit me to hospital and give me the meds through the Hickman. I still experienced about 10 days of vomiting and extreme diarrhea before the meds were able to slow it down and give me a break from the racking heaves. By this time the muscles in my entire mid section, front & back, were sore to the touch.

I can understand now. why they prefer the Hickman Line, as I wouldn’t have wanted to be poked for all the blood they were drawing or have IV’s for all the medications they were putting into me, all at one time. I also acquired a Walker during this time to help support me while I was walking and give me a place to sit when I became short of breath, because I became so weak I could hardly hold myself up.

Another week saw me recovering to the point where I no longer vomited at all, although I still had nausea and some diarrhea, I looked like I was on the way to recovery so they discharged me from hospital and I went back to the Cancer Lodge for a couple of days before I went home.

Everything seemed to be going along fine at first, although the nausea was still present, I was taking the pills and then after I was home for a couple of days, I vomited again. the next day I vomited three times and then it started again in earnest every couple of hours, the diarrhea, too! By the time I went back to BMT Day Care, I was in bad shape but they pumped me full of fluids and I felt OK, so I went home again, had a nice dinner and by ten that night started vomiting again.

By morning I could hardly move and had to beg a ride from my neighbour, ( for a 2 hour round trip on a Saturday), to the hospital and the BMT Day Care. I had already called the Day Care in advance and they just took one look at me and admitted me back to hospital. It took another couple of days to get the vomiting to stop and several more days to stop the diarrhea. This time they were not discharging me until all my symptoms were gone, including the nausea, so I spent another 2 weeks in hospital.

I had the Hickman line taken out last week. Finally. I hope that is an indication I am passed the worst of this chemotherapy treatment. I have some more Doctors appointments and blood work to get done this month. And if I have any say, I believe this is last of the chemotherapy treatment I will ever get. I will be looking into some alternative treatments in future.

So I am home now and feeling tired. I am still dealing with Neuropathy in my feet. I have a ways to go yet for recovery. As I said in the intro paragraph, I need to take some time now to rebuild my body and be careful of exposure to germs but I have survived and am getting better!

Happy Living!

Messy Shepherdess

MM – August 07, 2014

Money woes… still worrying over where the money is coming from but the recent tests all went well. I have been advised that I have an excellent chance of surviving with this disease for at least 10 years and possibly as much as 20 years and with the progress that has been made in the last decade who knows what advances will be discovered given time! Test results showed that the rest of my organs and body functions are all in great shape, if it wasn’t for the damage now caused by cancer, I could have lived to be a hundred.

One of the side effects from taking the Bortezomib is Neuropathy (damage to the nerves in the extremities, fingers, toes and such) I am experiencing this side effect and it’s one of the reasons the Doctor reduced the chemo treatment from twice a week to once a week. Unfortunately, it came back worse than ever in July. Both of my feet up to the ankles have the sensation of tingling and mild pain and across the top of my feet at the base of my toes is tender and feels like the area is bruised, although there is no visual sign of bruising. The soles of my feet feel like I am walking on tender puff balls, although there is no visual sign of swelling. The sensation regularly goes up the back of my legs, from the calves to my knees as well.The Doctor has stopped the treatment and has advised me to stop doing so much walking and to keep off my feet as much as possible or I may have permanent damage. This is all well and good, but I still have to get about to all these tests and appointments and I can’t afford to drive everywhere.

Stem Cell Separator machine

Stem Cell Separator machine

I have taken the G-CSF injections, (I self injected to save on the repeated trips to the hospital and monopolizing nursing staff that have far more important demands on their time over a long weekend). Although, I did suffer a couple of days of associated bone pain and headaches, not really headaches as much as my skull hurt, very weird sensation. But I did end up with a migraine one of those days.

For the most part, the preparations outlined in my previous blog went along great with only needing 1 full day of being hooked up to the 2 – IV lines for Stem Cell collection. Everything went so well they were able to collect enough stem cells with just 6 hours of being hooked up to the separator. I was so relieved to not have to go back and be re-hooked up for another day to that machine.

I panicked for a bit because I had to arrange for a volunteer driver to get me back and forth to the hospital for the collection, even though I had called and made the request several days in advance, apparently no one was available. I didn’t know what I was going to do, but at the last minute it was covered by two of the BC Cancer Agency Volunteer Drivers. This is such a needed and wonderful service, done by some very caring individuals. But I find arranging all these details very demanding on my limited energy and when they fall through I find it hard to cope. The stress from all of these combined worries is unbelievable.

Looking forward to a much needed ‘break’ from hospitals for a few days before the next and more challenging part of this proceedure, which is the upcoming pre-Hickman Line insertion blood work, Hickman Line catheter insertion, 8 hour Chemotherapy treatment and then the actual Stem Cell Transplant, which is when they give the stem cells just collected back to me. They advise the first month will be the most incapacitating time for me during recovery. So I will use this ‘break’ as best I can to prepare in advance for when I can’t do things easily for myself, such as cooking/freezing pre-made meals and cleaning away as many household germs as possible.

Happy Living!

Messy Shepherdess

MM – July 15, 2014 & Financial Appeal

Well, this part of the waiting is over, as I have the schedule now, covering appointments for the next 6 weeks. Every day for the next 2 weeks I have back to back appointments for tests and meds in preparation for the Stem Cell Transplant. Not to overlook the fact that I still have little to no money so am struggling with limited government funding bureaucracy and day to day life things like the rent, house work, banking, credit card debt, groceries, etc. I am required to have home support during this procedure but am expected to pay for it out of pocket. Plus I am expected to pay costs for some of the meds. None of which is possible.

Tests include things like 24 hour urine collection, more blood work, (so far this month I have given up more than 20 vials of blood), Chest X-ray, ECG, MUGGA Scan of my heart, Lung function test, dental consultation, Pamidronate infusion (every month x 2 years), more blood work, meet the Cell separator doctor, get G-CSF (Nueprogen) injection script, prep Chemotherapy, start chemo tablets, start G-CSF injections (which means going to the hospital every day for 7 days), start more tablets for 7 days, more blood work, 2 full days of being hooked up to 2 IV lines for stem cell collection, pre-Hickman Line insertion blood work, Hickman Line catheter insertion, 8 hour Chemotherapy treatment, and then the Stem cell transplant.Hickman Line Catheter

In between all of this I have doctors appointments, kidney specialists and counseling, too. Some days I have as many as 5 appointments or they are 8 hours long and require I arrange for someone to drive me as I will not be capable of driving myself or taking public transit. It’s exhausting just thinking about it.

The Oncologist scheduled me for 2 more chemo treatments before the required 14 day break necessary prior to Stem Cell collection on Aug 6 & 7. After which I will be having a heavy dose of Chemo that will wipe out my entire system, leaving me very sick and vulnerable to infection. Then they will ‘rescue me’ by giving the stem cells collected back to me, which will take about 6 months for my system to recover so long as all goes well and I don’t contract some additional illnesses or suffer more kidney damage/failure. stressing my system even more.

With the upcoming treatment and recovery time, the doctors say it puts me to next spring at the earliest before I can get back to working a wage earning job outside of the home. I am eligible to earn some money from home while on government assistance but so far I have not had any viable opportunities for real paid work come my way, that is not too physically or mentally demanding or time sensitive.

Meanwhile, I’ve pursed every opportunity suggested, filled out multiple financial assistance applications/forms but the on going stress of having no money and talking to collection agencies because I have no savings left and can’t work and there’s not enough government support to satisfy all the financial demands is depressing to say the least. I’m so tired. I just don’t know what else to do. I’m rather stuck, as I have always been able to rely on my self sufficiency to get by but these circumstances have limited my abilities, so I am now in a position where I have no choice but to humbly appeal to the good nature of others for help. I have a Pay Pal account or can accept Interact E Transfers, if you feel you can help me with either money to meet the immediate needs or potential work for during my recovery time, my email is cyntht@hotmail.com It’s an understatement to say any assistance will be greatly appreciated.
Happy Living!

Messy Shepherdess

MM – July 06, 2014

Waiting, waiting, waiting, …. to hear from the Bone Marrow Specialist and find out what the plan is for the stem cell collection and transplant. In some ways I am impatient to get making the arrangements necessary for this transplant to happen, because it may mean the cancer will go into recession and I can get back to a normal life sooner, but at the same time I am not looking forward to it. Been reading the binder they sent me full of information on the BMT process and the idea of having a catheter (Hickman Line Catheter) installed into my heart does not sound like a fun time to me and apparently it has to stay in for a while afterwards. Gives me the creeps and my mind is just repelled by the concept.

Meanwhile, I think I over did it with the house move on the weekend, as I was really sick again after the chemo treatment on Monday last week. Nauseous, diarrhea, vomiting, tingling and swelling in my feet, aching in the calves of both legs, headache. Didn’t feel like getting out of bed for 3 days and then took it real easy on day 4, just trying to eat something good so I could regain some energy. Feel Ok today but go back for my last treatment of this round tomorrow.

Am enjoying our new place, even though I haven’t been able to unpack everything due to being sick but just the same it feels better, a calmer place to be in. Cleaning and unpacking will happen given time, I’m sure. Can’t thank the folks that helped with moving day enough, sure was great to have some help!

Happy Living!

Messy Shepherdess