This is a bit difficult- as I find myself in quite a different position. I’m operating at maybe 30%. Basic necessities are very difficult on my own. My family is quietly & so sweetly taking on my duties plus caring for me. 

Physically, my stamina/energy is so minimal that sometimes eating makes me exhausted. Quite a radical change from a month ago. The nausea & vomiting have increased to 24/hrs but I got an Iv yesterday that helped for a bit. 

Eating is a challenge, as to what the nausea will let me try. So I eat tiny portions every few hours. 

I’m in the very middle of 2 different protocols, both of which give me Hope & Peace. The Lord has given us so much more time than we anticipated, and I feel Him walk beside me. 

For the med facts people out there: *my words* the rest is direct copy

pet scan 6/17/25

MUSCULOSKELETAL: Innumerable hypermetabolic lytic metastases. Overall these have substantially increased in size and number since 05/02/2025. There is a nonacute appearing suspected pathologic fracture

of the right 2nd rib laterally that is new since 05/02/2025.

IMPRESSION

1. Findings consistent with interval disease progression since 05/02/2025. *appears the cancer has grown since 5/2*

2. Extensive lytic osseous metastatic disease. Lesions have increased in size and number. *more & bigger spots on the bones*

3. Extensive metastatic disease in the liver overall felt to be worse with interval liver enlargement. *extensive liver spots & concerning growth of liver as well*

4. Worsening pulmonary metastases. *lungs are worse*

5. Other findings as above.

So - yeah - not the best news. 

I’m hoping this is part of the worst and it will get better. Scott was completely blindsided by the shoulder surgeon. He expected to be back to work tomorrow, but was told absolutely not before the end of July. On the other hand, the Lord is providing me with my husbands near constant support. 

Thank you to those that encouraged our anniversary cruise. It was good to be alone together. It was good to be sick somewhere else. It was good to sleep (up to 18 hours some days). Neither of us regrets going, even just for those few moments where I felt ok. I’m relying on my extended family and friends to care for mine during this time. Please pray for their strength & peace, God’s Peace to you & yours, aileen 

In the throes of healing

I feel that healing, like so many clean ups, you end up looking at a heaping mountain of mess that looks way worse than when you started. 

That’s where I’m at, I think. 

It doesn’t look good at all… round the clock medication to keep the nausea in check, coughing, sleeping (sorta)lots, and accomplishing little (if anything) in terms of mom duties. My body is giving its all… and feeling the strain of that commitment. I watched one of my kids do a triathlon- swim 1/4 mile, bike 20 miles, and run 6 miles… in one morning, back-to-back, with a broken pedal and a belly of nerves and doubt. She finished strong and I was so proud…. So very proud. Because she can do hard things. And to do hard things and finish strong is even more incredible. This is my hard thing. 

I’m ok with that. There’s no reason I should be eased through this journey. I’m a child of the Almighty God and it’s His will that this is my journey. And I don’t feel this is the end. I sincerely believe I’m smack in the middle of the worst part of healing… the hard work part. I feel that the prayers from all of you have allowed my mind and spirit to reside just above the misery that my body is experiencing. It’s a cherished gift anytime I’m lifted in spirit. Shortly, My husband and I will celebrate our 24th wedding anniversary. At this time, it’s uncertain whether we’ll be able to keep those reservations due to the nausea. I do have Treatment twice next week. And it is another Iv therapy. I believe it’s a 6 session course. 

Oh, the nausea and fatigue - are believed to be from my liver (showing inflammation/distress) it’s functioning properly still, so it’s possibly the treatments (healing), or the shots(hormone block meds), or the cancer progression. I choose to believe it’s the treatments mid clean up. I’m hoping with another week of dedicated fluid intake+medications the liver will settle back down. I can do hard things. Love & God’s Peace to you and yours, aileen

So... I had a ct scan last week, and here's the results:

“IMPRESSION

1. Interval disease progression with innumerable new pulmonary, innumerable hepatic and multifocal lytic osseous metastases.

2. Persistent intrathoracic, left supraclavicular and abdominal lymphadenopathy. Retroperitoneal and right iliac adenopathy has improved.”

Here’s what that says:

#1 = cancer has progressed with too-many-to-count new spots in the lungs, liver, and in a few individual bony areas (spine, hips)

#2 = the lymph nodes in the left collarbone and abdomen continue to read as cancer. However, the right hip lymph & lower abdominal lymph have improved (some completely gone/resolved)

Background: my rib had been out of place on the upper R side for almost 2 weeks, making it hard to cough, clear my throat, or take a decent breath. 4x Chiro appts later & I think we have it back in place but the muscle spasms are still restricting a bit. The Chiro says they take a week or so to settle. 

My thoughts are the lung spots are phlegm that I haven't been able to clear until the Chiropractor fixed. The ct just reads there IS something there - not what it actually is. 

The liver makes sense, if it's cleaning the lymph/blood then it's getting gunked up. Dr Jeff has me starting Lipoic acid to help immediately. We met with him Friday for an appointment, & to establish a game plan. His plan is Iv hydrogen peroxide, I’ve already received 2 treatments, and adding in a daily mushroom tincture/med. I suspect my nausea is a combo side effect of the liver being inflamed and the Faslodex shot. It is slowly improving. The oncologist read the CT as very concerning, desperate even. Her option was to start drip chemo this week, continuing for 2 months and then (if it’s stable) to move to palliative oral chemo indefinitely. Her option has a straight downhill trajectory for the rest of my life (she estimated a few months if I don’t do anything- insert eyeroll here) Dr Jeff agrees that my interpretation with the rib/Chiro thing is possible, and reasonable, but the cancer is so aggressive that we do need to take it seriously. I will continue with 1-2 Iv hydrogen peroxide treatments per week, all my supplements/diet protocols, and enjoying the incredible blessings I have received. 

I'm not done. Not dying. Just regrouping and trying different tactics. In the end, this is entirely in God's hands. Trying hard to let go of my doubts and fears and fully trust that I'm doing the best I can while still honoring the gift of time He has given me. God’s Peace to you & yours, aileen 

Can I ask you to do something for me? Would you… yes, you specifically, pause at this moment in your life and pray. Pray that He will bless me and guide me, to His glory, on this journey. That His love will shine through me and bright enough to be a beacon. That I can live in this great blessing of life. 

Would you do that for me right now? 

thank you. 

It’s been a long couple weeks, I’m not super into being in the spotlight, so to speak. The kids and Scott are watching me closely, as well as my family & friends. These posts are not fun to post… it’s embarrassing, nerve wracking, and makes me feel very self conscious. But, at the same time I feel such an overwhelming push to write. To share. Ugh.

I’ve started the high dose curcumin, which is the main healing compound in Tumeric. The infusions are a couple hours… they put a taste in my mouth “like spicy dogfood” for about 8 hours. I’m nauseated the whole day and into the next few. I fight panic attacks on the way down - silly, as these infusions are NOT that bad. 4 more to go.

The insomnia is increasing as well as the hot flashes and bone pain. All are managed fairly well. I feel good about 70 percent of the time. Like, decently good. Which is more than I ever expected on this whole journey. But I do think the prayers will turn the tide. I do think there’s incredible power there. Together, we’ve got this. Thank you, God’s Peace, aileen

This one’s a bit tricky. Hard to find the right words… start with the good news, I guess. The pet scan shows the lung issues have completely resolved. Phew. I wasn’t excited about the possibility of having cancer in the lungs. It appears that those nodules were indeed a cold/virus of some kind, as they’re not mentioned.

The bad news- is that there is progression in the lymph & bones. Around 20 new lesions in the lymph & 3 additional ones in my bones. It’s possible that some of those areas are just in fight mode, inflamed and requiring more glucose to those areas. That’s my prayer. 

We’ve been blessed with much more time than the oncologist originally expected. For that we are extremely grateful. For some reason the Lord has seen fit to continue this battle. His reasons are unknown to me, but I trust they are for good. Thank you, for the prayers, support & gestures that have brought such love & warm into this season of our family’s life. 

I’m not done fighting. We met with Dr Jeff today, and I started another treatment protocol with curcumin. I have many options to try in the natural/homeopathic realm. This next protocol involves 6 weekly infusions in Mankato. 2-3 hours at a time, they’re not painful, but they are nauseating and make the body produce a weird/unpleasant odor for a few days. 

I will continue with the diet & supplement program with some additional input from a certain breast cancer survivor as a mentor, per Dr Jeff’s recommendation. 

Something to ponder in those quiet moments… suppose you woke up tomorrow with only the things that you have thanked the Lord for… what would your life look like? 

Someone sent me that message years ago, and it still resonates with me. There are so many blessings, miracles, coincidences that happen regularly all around us. Are we appreciating and searching them out?!! 

I’m choosing life. I plan to focus on the small wonders and continue this journey with patience and prayer. 

Continued prayers of peace, joy, and strength are always appreciated, with love, the Tulkki family.

We went to the biological dentist (Dr Karl Anderson, St Paul) per the recommendation of Dr Jeff. The scan & findings are resulting in 2 procedures/surgeries to clean up necrosis (nasty microbes) within my jaw bones. These cavitations were formed when I had my wisdom teeth removed ages ago. They were identified on the scan at Dr Andersons practice. These scan results show the bone never healed and the necrosis has become trapped without good circulation and immune response in the jaw bone. One root canal is responsible for basically pumping pathogens into my blood stream with each bite I take. Very interesting. My procedures are scheduled to start the end of March, finishing in May. The total will be around $8000. So, thank you - everyone for all of the support! Actually amazing how the Lord has provided so many people/treatments on this journey. 

Scott’s shoulder was shattered in a ladder incident in November, due to the lack of progression in healing, he’s on restrictions & has been home and able to care for me and bring me to treatments. We find out next week the treatment plan for that. Hopefully he will be able to get back to work soon. 

My treatments are over half done, just 2 left!! These are in Mankato & very challenging to complete. I have a countdown to the final session. I’m starting to resume the side effects of the hormone blocking injections, we are certain they are working. How I’m feeling- TIRED. Unbelievably tired. (Which is either concerning, or a side effect of the injections) The insomnia is getting worse, the bone pain is worse (but still very manageable- 4/10) and the hot flashes are ramping up in intensity again. I’m grateful for these signals that indicate my body is responding correctly to the treatment plan. Mostly just tired and severe brain fog. Names & faces, memories, and just day-to-day thinking/doing are all harder right now. That’s the scoop! Prayers for my family would be so appreciated. Love & God’s Peace, aileen 

Book recommendation from Dr Anderson:

Hidden Epidemic by Thomas E. Levy, MD, JD

I’ve discovered that there’s a bit of a schedule to this whole process. The devastating news of reoccurrence triggers the shock phase. This part is so hard to get through… emotions are high, energy is nonexistent, and the fatigue is crushing. In this stage it’s hard to fathom steps forward. Grief of the future plans, imagining the worst, and getting through each wave of fear make it hard to lean on one’s faith & support system. Thankfully, you guys helped pull me out of that phase… straight into the ‘buckle down and attack stage.’ That’s where it feels I’m at, as I write this. Ready to work.

Here’s the game plan: 

Finish the next 4 rounds of natural chemo, continue with the loading Faslodex shots, continue with the dietary restrictions & supplements, Essiac tea, Fenben/iver and the light use of the Rife machine. I do have options to attack that I’m saving at this time….

I believe the Rife would be effective- used more often and with the proper detox & lymph protocols & supported by diet & supplements. However, I’m confident the natural chemo will work so I’m not leaning too heavily on this option at this point. 

Suppository RSO (cannabis) is also available as a 90 day protocol with maintenance dosing for many months. I am convinced this is also an appropriate action for attack. But… if I add it in now, it wouldn’t be clear if the natural chemo did its work. Considering that I’m 1/3 of the way through the treatment sessions, I want the results to be credited to the actual treatment I’m doing vs wondering which therapy achieved remission. And it’s still in my back pocket should the natural chemo fall short of expectations. 

Currently, I’m feeling good… just tired, for the most part. The pain is minimal (except during infusions) as of now. My other symptoms/side effects are being managed fairly well. I should know in about 4 weeks how my body responds to the shots and their side effects.

Emotionally, I feel I’m over the grief of our families future (for the most part) and feel God’s comfort and presence on the journey. It’s hard to put into words how the suffering also brings the feeling of being carried above the everyday worries and ridiculous politics of our life. It’s like watching it from on top of a mountain. I imagine myself there, sitting under a tree, feeling the wind and knowing how close I am to the heavens and Our Lord Jesus. 

Thank you for the prayers, support, cards, meals and love sent our way. I have been blessed abundantly with your support. I pray for my children’s and Scott’s hearts to be open to the love and blessings as we walk this very bumpy road. The emotional roller coaster ride is crazy intense. I’m secure in the knowledge that I won’t be denied a single breath in Gods plan for my life. I just hope He gives me the mercy to see my children grow more, to see the grandchildren that may be someday. I pray all of you reading this enjoy a small beautiful moment that you perhaps would have forgotten to notice in the busyness of life. May you hold God’s perfect peace in your heart ~Aileen

As most of you know, the cancer has returned and I’m back to treatments in Mankato. We’ve been asked to republish the campaign to keep people informed, as well as a way to support our family. Here is the current situation: The hormone blocker I was on stopped working in December causing the cancer to bloom. It’s extensive- from my jaw to my pelvic floor on the left side. Innumerable spots and high intensity on the Jan 2025 PET scan. The replication rate (the % of cells actively dividing) is at 88% (most breast cancer is slow growing at 10-15%) the cancer I have is the most aggressive Dr Kambal has seen in his career. With no therapies the oncologist (Dr K) estimates I have 4-6 months. 

BUT, I AM doing LOTS of therapies. I started the Faslodex injections (shots) already and they should slow or stop the progression, however… the medication takes 35 days to reach full strength. These injections require trips to Waconia on a regular basis. This is the only conventional treatment I will be using to start with.

Per Dr Jeff’s (integrative/osteopathic doctor) recommendations - I will continue with the supplements & therapies offered at the clinic in Mankato. He is very optimistic the cancer will be knocked down with the 6 sessions of natural chemo, and the continued Iv treatments & supplements alongside the Faslodex shots. This protocol should get me to remission again. However, the Faslodex treatment has extensive and serious side effects. 

Financially, the Iv therapies range from $300-$1000 per session. The supplements in total are about $500/months. This treatment regimen is expected to be around $8000 to get me through March. After that he’s expecting costs of continued therapies to be $1000-$1500/month thru September. Decreasing from then on with each clean PET. 

Then there’s the dental surgery, to treat cavititations within the jaw bone that cause biotoxins and could be another trigger for the reoccurrence. Expected costs are between $1000-10k on the conservative side. 

Dr Jeff referred me to a biological dentist in St Paul, Dr Anderson. I had the scan already and do have at least 3 cavitations, the treatment conference will be before the end of February.

At this time all of the Mankato treatments, supplements, & dental treatments are out of pocket. All funds raised will continue to go for these treatments & therapies. All prayers, and support in any form, are greatly appreciated. We are leaning heavily on our faith and the Lord’s plan. 

Update 9/5/24

Got my scan today. 

“IMPRESSION: No CT evidence of metastatic disease. “

…Thank You Father, for Thy mercy, that has blessed me, on the way…

Thanks for all the thoughts and prayers and support. We can breathe a sigh of relief.

Therapies I’m continuing include:

High protein, low carb, organic food plan

Essiac tea daily

Daily Supplements:

•Hormone receptor detox

•Hormone balance

•Tudca

•Vitamins E, k2, D, Methyl Bs, magnesium’s, L-Tyrosine

•Letrazole 

•Coral calcium & Beef gelatin

•seleno-iodide

Nicotine

Weekly Rife sessions

2 sessions of Ivermectin or Fenbendazole per month 

Nothing new… just clarifying a few things. (I keep getting asked) so only read this if you’re actually wondering/interested. Trying to be very transparent about my journey, for those who will walk a similar road at some time.

I try to stay positive, grateful, and keep my focus on my faith & family. I never know how to answer the “how are you doing?” questions honestly. Most of the time, most of the days - I feel ‘normal.’ Which is amazing, that it is even possible for my life!!! But if you’re thinking that I beat cancer -twice! - and came out the other side unscathed, you would be wrong. At times it’s difficult enough that I wonder why He spared me. The emotional roller coaster is going to run every 3 months for many years… before they will consider me ‘in remission.’ But the cancer doctors (insert eye roll) repeatedly tell me that there will be no remission, that it’s not possible, and that’s not the goal. There is no cure. Good thing I don’t really pay attention to their predictions. I listen to my supporters, that speak of faith, and love, and HOPE! But here’s the bare bones:

Deficits that I’m struggling with: insomnia, every single night. I take medication to help with it but…. Yeah. 

Bone pain: they think this is a lack of estrogen (which I’m on a daily medication to block any estrogen that might be available) this will continue to plague me for the rest of my life as any estrogen can trigger a relapse. Mostly it’s more painful at night, as my body has a low tolerance by the days end. Osteoporosis & arthritis are inevitable. Most of the time it’s manageable… every now & then it’s excruciating.

Hot flashes: again due to lack of estrogen. It’s a random, instant internal sauna, often accompanied by nausea - lasting anywhere from 3-20 minutes. I’m now up to 15-25 in 24 hours. Also contributes to the insomnia when a person is awakened to heat pouring out of their entire body. These are expected to last 10-15 years. 

Fatigue: I can clean my kitchen without stopping now!!! So pumped that I can do that… it’s getting so much better. Sweeping the floor used to knock me out, for sure for a whole day, & sometimes for 2! I go to bed exhausted every day but increase my stamina a bit each week. If I overdo it, I can be laid up for a day or 2 to recover - but that’s WAYYYYY better than even a month ago.

Memory loss: it’s a minor thing, but so very sad in some ways. Names are hard. Little things, big things, some are vaguely there - some memories are just gone. Nothing. Sigh. I actually don’t mind forgetting the treatments. High dose chemo & Natural chemo - I know they were absolutely both brutal. Don’t need to remember them, thank you very much!

Current Treatments: Rife machine (thank you, everyone for the donations that allowed us to purchase this!) using it 2x/week, infrared hothouse - will be using this 2-4x/week, nicotine- organic cigarettes (yes, nicotine fights cancer) 2-6/day, medications & Supplements ($500/month), Iv Vitamin C in Mankato- 1x month.

And there you have it. That has been my cancer journey, prayers that this path continues, God willing.

I probably won’t update except at the scans.… just will keep on keeping on. Thank you. I can’t possibly tell you how much all of you mean to me. Your support has made this trial possible to endure. May God’s Peace be with you and yours. ~aileen 

Update #26 - 6/7/24

I’m feeling content, wrapped in God’s love, carried in His tender care. Our prayers have been answered, AGAIN! My heart is singing… these last few months, of watching each one of my precious children struggle under this heavy burden… reassuring them as best I can. Yet, always with the knowledge that I’m not in control of when my time to leave them is. 

My PET scan came back - all previously known metastatic disease has resolved! The radiologist noted a small uptake in one picture but it wasn’t enough to warrant any further testing, and not enough to call it suspicious. I meet with Dr Jeff in a week or 2 to discuss my continued healing program. As of now, I will be using the Rife machine, Essiac tea, diet and Fenbendazol/ivermectin as my protocol. Thank you, to all who have supported me & my family! I wouldn’t have been able to do this without the prayers, equipment, IV treatments, and help! Hoping God’s love and peace wrap around your heart as you read this. All our love, aileen

So… I did a dumb thing today. Like, Wow dumb. Impressive actually.

I was convinced this was it: the start of the slide to sheer death, my liver was compromised. The area above my liver, bottom of ribcage was/is inflamed. I was nauseated, bloated, and terrified. (I’m actually fine, btw) 

You want to know why? I was absolutely certain? Because… I figured it out this evening: because I feel guilty. And unworthy. You see, I’m going on vacation. Again. I get to spend a week on a cruise with my love and some dear friends and family. I feel guilty because 

I am going to have fun, make memories, enjoy the beautiful world, experience new things, eat things I haven’t in a long time, not spend time researching treatments, stay out of the doctors (fingers crossed) for a whole week. And how can a person just do that, when we buried a friend so recently who fought so hard and endured so much worse than I? 

When I cheated last night and ate chocolate covered almonds? 

Not only that, I drank a tea that had real sugar in it. It wasn’t even organic.

And it was in a plastic bottle. 

That’s just the start of the list of things I’ve done lately that don’t meet my standards of perfection. I made a promise that I’d fight as hard as I can. During the midst of this morning’s freak out, someone was kind enough to remind me: “as I can” doesn’t mean perfectly, it’s means as much as is reasonable. Fighting to live, is no way to live. Living to live… is another matter. 

How goofy to expect that I would NEED to do all the things, all the time, forever. Shaking my head. That’s not realistic or even possible. The tea I drank (green tea) is supposed to help support and prep my liver and further reduce the cancer. Yes, it wasn’t organic, yes, it was from a plastic bottle, and yes it contained sugar. But a person can’t, or shouldn’t, believe that everything one does is wrong in some way or another. We MUST just do what we feel is right at the moment. I sincerely think that God IS so much more understanding and gracious than we can fully realize. I’m sure He was practically eye-rolling today at me…

Tears streaming, shaking in fear and grief, Mentally organizing funeral arrangements, a final to-do list, the whole nine-yards. Over nothing. Just wow.

Nothing He couldn’t fix in an instant. He doesn’t need us to do all the things. Anything. It’s already done. Accomplished. Yes, I don’t deserve the trip. But, I feel He still wants me to enjoy it. And I will. I’m done feeling guilty. I’m going to accept this incredible gift and enjoy it with a grateful heart, treasuring these moments. 

4 doctors calls, an ER visit, ultrasound, 11 attempts at a blood draw & all my fears were for nothing. Scans & bloodwork normal. 

Like I said, dumb. 

All I really needed to do this morning was trust. Trust that God’s plan is good. And I could have had a peaceful day. I don’t know why something so simple is so hard. May God’s Peace hold you & yours.

Update #24 4/18/24

How I’m feeling:

Physically - tired, sore, hot flashes are building but still mild compared to last year, insomnia is a struggle still, infusions (Ivc & K3) 1x/week in Mankato … 3-5 hours are excruciating. Probably due to the recent surgery but they are known to be quite painful regardless. Think root canal, or end of birthing labor - I’m in too much pain to advocate or make decisions. I require my husband by my side to adjust the flow rate and stop the infusions when it’s more than my body can tolerate. Literally incapable of adjusting the IV or much of anything during the actual infusion. The pain tapers off for half hour afterwards and the soreness of my muscles, arms, and jaws take about 24 hours to relieve. 2 more to go. These treatments are considered “natural chemo,” as the vitamin k3 helps destroy the protective protein shells on the cancer cells & allows the vitamin c better killing access to those cells. Normal/healthy cells are strengthened with the infusion. Each treatment protocol is 6 weeks of weekly infusions, I don’t know how many of these treatment sessions (6 weeks) will be required of me. 

Mentally/emotionally: it’s tricky… I still don’t feel like I have cancer. But, with how aggressive my cancer cells are (88% are actively replicating) it’s worrying. Without ANY treatment it’s estimated 4 months before my body is overcome. Obviously, that’s not an accurate expiration timeline due to everything I am doing. Unfortunately, the scans aren’t available except every 3 months. So… we won’t know if I’m making progress, stalling the cancer, or losing ground until the end of June. I feel like I’m fighting as hard as I can… with watching my diet, the 30+ supplement pills/day, the powders, the medications, daily saunas, prayers and positive thinking.

I’m ingesting ozone water, and purchased the Rife frequency machine $2000+ to keep fighting in alternative ways as well. 

Thank you for all the prayers, support, and meals… this would be so incredibly hard, or impossible, without you. May God bless and keep all of you in God’s perfect Peace, aileen.

Update 4/3/24

The surgery went well, last Friday, and I think I’m recovering nicely. We enjoyed my sister’s hospitality on Easter, and it was an absolutely gorgeous day. 

My current treatment protocol under Dr Jeff’s guidance:

Daily: Essiac Tea, Fenbendazole, Artemisinin, TurkeyTail, NAC, Zinc, Magnesium, CoQ10, Hormone blockers & balancers, high protein low carb diet, ozone water, ph+ water, and nicotine. (Total of 30-35 pills/day) ewww.

And Essential oils of Frankincense, Myrrh & Lavender

Weekly: 4-6 hours of High dose VitC & K3 infusions 1/week in Mankato 

We purchased the ozone machine, so I will have an option to bathe in ozone water as well as drink it. Brrr tho! Ozone stays in cold water better. (No the ozone machine is not claiming you can or should drink it. That would be against regulations. Diet pop? That one IS ok per the FDA. I really don’t understand this world!)

We were also able to buy a secondhand Rife machine (the gb4000 with Mopa) I’m still in training on how to use it, but I’m anxious to start! So much hope! 

It’s very awkward being in this situation, not once but twice. My entire life feels so surreal, like, every day - all day. I feel mostly fine physically and even mentally/emotionally. So it’s hard to even imagine that this could conceivably be near the end?! It makes no sense. And yet, as a parent, I can’t completely ignore the possibility. I feel it’s my duty to help the kids navigate this situation, prepare for everything to go South, but ???!!!??!!! Seriously. What in the world does a person do?! Ugh. Don’t want to traumatize the kids either. Plus. I beat it once, granted for a short time. We are currently at 2-3x longer than was predicted…. I don’t feel like I have cancer. I feel sick during the infusions and a bit after each handful of pills - but nothing like chemo. 

Oh - yeah - chemo… many have asked why I’m not doing what we did last time. It’s not an option. No one will prescribe that chemo again. And the rest - I am doing - all the rest that I did last time plus a couple more. They did offer palliative chemo, with the hopeful expectation that it would buy me another couple months. We/ I have decided that, for the moment anyways, the side effects of the chemo aren’t worth a couple extra months. I’d rather feel like I do now for as long as I can, God willing, that could be decades. At least I think so. Dr Jeff is very optimistic and knowledgeable. His guidance has been such a blessing, as well as the prayers and support of all of you. Thank you. I’m humbled and grateful and ashamed and hopeful. Probably delusional as well, right?! Take care and God’s Peace to you and yours. 

Quietly reflecting on the last year. It’s been a wild ride. Searching the country for an oncologist willing to look beyond StandardOfCare - boy, I can’t stand that phrase. Something that is made to look reassuring but has become twisted and perverse. SOC = what insurance and the medical industry want a person to do. It sounds good, set a standard and then everyone gets “the best.” But what actually happens is horrid. The doctors are no longer able to treat you as an individual patient, unique, and in your best interest - despite their experience and personal patient/dr relationship. They’re reprimanded or worse for suggesting or following any other path than what has been established as SOC. Sigh. Enough of that. 

Soooo what’s really happening? I have had consults with the Onco (Dr K) and the Radiological Oncologist. Their insights is that I have very little time (insert eye roll here - no emojis on this thing) my response, is and has been, YOU don’t know that. My time of death was established before I was born, is what I believe. God has known me before, and knows me still. My expiration date is in His hands, alone. Admittedly, their scenarios are painting a very grim picture… radiation and oral chemo on top of the insomnia and bone pain, which *could* prolong my life a few months. 

By the way- I feel great, besides the minor pain & persisting insomnia. Why is it when I feel good everyone insists I’m dying immediately? Hmm?!!! Irritating. 

Anywho, where were we… ah. Radiation (if it’s even possible, which I would need to find someone willing to be very risky with my internal organs due to where the tumors are located) radiation & chemo = Pain plus more pain, burns, nausea, vomiting, toxins all over, disintegrating bones, yada yada yada… until I keel over or can’t handle it. No Thank You!

Fortunately, Dr Jeff (Mankato) has some experience in these areas. His take - agrees with doing the hormone blockers and surgery to prevent the ‘grow’ signal from being emitted to any remaining cancer cells is a reasonable suggestion. Scott & I had already started on both those, surgery is Good Friday. And then Dr J described the cancer as “the straw house” in the 3 little pigs story. Fast to grow & build, but not too hard to knock out. He gives so much hope… it’s nice to have a professional give hope instead of dire. Especially, when it’s day after day of fancy degrees all agreeing that I’m doomed in short order. Dr J has tons of letters after his name, not just some MD, not just a couple. Many. I’m grateful to have his assistance. I’m so thankful God has put him in my journey. I need all the support I can get. He adjusted my winning recipe (wink) slightly. Adding in a few things. I am to start 4-6 hour weekly high dose Vitamin K3 & C infusions. They’re painful and nauseating but I feel fine a couple hours after. Plus, they don’t harm my healthy cells. He’s confident that I can do this. I admit I was slacking on the diet and treatments in January and February…. But I also tried a pain management drug from my pcp without researching first. Once I read about it … it apparently can trigger metastatic disease. So combine that with my less aggressive treatments for 2 months = cancer return. Sigh. So we are gearing up. Here comes the fight again. But it’s good. We are so very grateful that I’m here. Also, that I had lots of weeks of feeling good! Enjoying the kids, making memories, THIS is LIVING. And I’m doing it, my way. 

March 18, 2024 by Aileen Tulkki

“Praise God from whom all blessings flow…” I had 6 weeks without pain. And got to go on a week cruise with my love. It was dreamy. My heart was so full of joy and peace. 

Unfortunately, we had to come back to reality. My pet scan came back positive. 2 tumors in the lymph nodes under my liver and the under arm auxiliary lymph area lit up. The cancers back. The oncologist isn’t optimistic- my ki67 % (basically how many cells are replicating) is 88%. He’s never encountered any cancer that high (he’s a well rounded oncologist with a specialty in blood). He can offer palliative chemo pills, and some hormone blockers. The high dose chemo is not an option. He estimates 12-24 months, maybe up to 5 years… but with the ki67 that high it’s unlikely. 

My first steps are to get very aggressive with the diet and Essiac tea. Back to Fenben (now doing double dose of what I did before 4g/day). Artemisinin and turkeytail/ashwaganda Mushrooms as well. Each of these therapies has been effective to cure cancers on their own. Prayers that God will bless my efforts, and give me more time.

I started the hormone blockers from Dr K (oncologist) and will be aggressively searching for a obgyn willing to do the removal surgery asap. This combo will slow down the cancer, but restart the bone/nerve pain and then amplify it. I’m not sure I can tolerate the oral chemo side effects, as well. The insomnia & chest pain returned last night. I expect they will be my companions for the journey ahead. Trying to plan my battle and make my stand.