17 HOURS till tumor death...

Below you will find the update that led us to South Carolina for the next big step in my healing journey.

Oh, where do I begin. This journey is something I never anticipated I would be on, and none of it has gone the way I imagined it would go. Since my last update In July, I have had a pet scan with some different results. In February the cancer had grown, and in May we found out it shrunk pretty well. The new medicine (immunotherapy) that turns off the rapidly reproducing Her2 positive cells was working really well. In August I went in for another pet scan and I knew the tumor had grown in my breast. I didn’t really feel it grow anywhere else though. The PET scan confirmed the tumor had grown, as did the other 3 sites of cancer from May. But not significantly, and we celebrated because there were no new spots. It was a bitter sweet moment of, “it DIDN’T SPREAD! It grew a little, but it DIDN’T SPREAD!” My sweet oncologist at the time, who has always been concerned and really wants me on chemotherapy because that’s what she knows best, started to encourage chemo again because she didn’t feel like the once every three-week immunotherapy infusion was working. 

 

I disagree, and I know it’s working because it has kept new cancer spots from developing, meaning any weak cancer or new cancer cell that tries to develop is turned off and no longer replicates and dies. She doesn’t feel it’s working because the cancer still grew. I told her that I was starting to navigate some new test results and treatment options with my Doctor of Osteopathy, and that I would like some time, and for her to consider doing a specific chemo other than the one they always use first, as the other chemo my cancer responds better to, according to one of my blood tests. She hasn’t said no to this, but it is outside her normal protocol. 

 

There is a treatment called “insulin potentiated chemotherapy”. It’s where you wear a continuous glucose monitor in your arm, and before your chemo infusion you receive a dose of insulin to drop your blood sugar to around 50. Anywhere from 80-120 is normal. You want to drop it low because it makes the cancer weak at that time. The cancer is hungry, and tricked into thinking that I just ate sugar (which cancer uses for energy and to grow) because there is now Insulin in my body. At that time, you administer a tenth of the dose of chemo a person would normally receive, which the cancer isn’t smart enough to not consume, where as your regular cells do not. It is a much more tolerable for my body and a safer way to protect cells that I need to heal the cancer. After that happens, you eat fruit, and the sugar that’s in fruit, is good sugar that the cancer will try and consume, further pushing the chemo into the cancerous cell, and killing it. 

 

Now I know you are all thinking, that sounds so logical. Why aren’t we doing that on every one? Why wouldn’t your doctor do that for you? Why is your doctor not wanting to use the chemo drug that your blood work showed your cancer would respond best to?

 

In our medical industry here in America, once you are diagnosed with cancer you are now put into a specific protocol. Depending on your cancer and stage, there’s basically a flow chart for your treatment, and doctors cannot stray from that because they will risk using their license or being under investigation. And doing chemotherapy in the low dose form is a definite step out of the protocol. It’s not that my doctor doesn’t want to try it, but she has been trained up in regular western medicine cancer protocol and it is all she knows and trusts. She has my best interests in mind, but her hands are tied in some areas. I was able to ask one of my other doctors to get a continuous glucose monitor, and my doctor of osteopathy has also been researching, studying, and doing insulin potentiated chemotherapy for years. He is currently trying to open a practice in South Carolina where it is legal to do insulin potentiated chemotherapy, because it is ILLEGAL in Minnesota. South Carolina, and California are two of the main states that it is legal and they do it regularly there at functional medicine cancer treatment centers with many people having great success from it. 

 

My doctor at HCMC tells me each appointment she recommends Taxol (chemotherapy) but each time we discuss what I am doing next for treatment other than that. She is concerned that we will run out of a “time window” for chemotherapy to work, but thankfully the cancer is stable and as often with cancer, you have time to take a breather, and investigate, do your research, for your treatment plan. There is no big difference between where I am now and where I was when I was diagnosed other than less cancer spots, but the tumor did grow a little bit. My doctor is concerned that I would develop a tolerance to the chemo as well. That’s why so many people who have cancer, eventually die. They ran out of chemicals (chemo) in the western medicine realm that will kill the cancer. OR your body can no longer handle the stress of the chemotherapy and the side effects that come with it, such as heart failure. 

 

My doctor is not wrong about the cancer developing a tolerance. Cancer is SMART as hell. But there are things that cancer really hates. And every 3-4 weeks one needs to switch up what treatment is occurring so that it keeps cancer guessing and doesn’t let it build up a tolerance to that specific drug. It’s essentially a race against the clock to kill the cancer before the drugs used to kill the cancer, kill you. 

 

Early on in my cancer journey I had decided to not do the chemo, because I didn’t believe it was the best course of action out there for me. I have now landed on a blend between eastern and western medicine, and according to many successful cancer friends on social media and other cancer specialists, that is generally the perfect combination to kill cancer and heal your body. 

 

Many of you I know are curious as to why my doctor hasn’t recommended a mastectomy, or lumpectomy. In western medicine, since I am stage 4 cancer due to the cancer in my sternum, they believe I am a waste of a surgery. The cancer has shown that it can and will spread, and they would rather use their resources on a woman whose cancer is still contained to the breast or lymph nodes. It makes no sense I know. I would love to have someone just cut out the tumor because it’s wildly uncomfortable to lay flat on my stomach and it is a noticeable lump in my breast, and it’s the wildfire fanning flames to the other spots of cancer that are slow growing. Surgery is sometimes necessary and recommended to people, but for me it was never really up for discussion unless it really interfered with my quality of life, or became incredibly painful or dangerous to other organs due to its size. 

 

I have many friends who went about the surgery route, full dose chemo, radiation, etc and are now cancer free. I also have friends who went that route and feel like they just can’t catch a break and its dumpster fire after dumpster fire. 

Please hear me out on this. 

EVERY. PERSON’S. CANCER. JOURNEY. IS. UNIQUE. 

Every person’s cancer journey to healing their body needs to be personalized to them, and tailored to their life. We do not fit into a perfect protocol flow chart and then “ring that bell” as being cancer free, and bam you are back to your life pre-diagnosis and all is well and we can just right that year or two off as the worst of our lives and then carry on. But that’s what expected in our culture. Anyone with cancer will understand, that you feel every headache, short of breath for a moment, ache, dizzy moment, etc- and your head goes straight to “is this cancer?” You don’t return to pre-diagnosis mentality. You walked through an incredibly dark valley in life and you cannot, your body physically won’t let you, be that same person you were before the diagnosis. 

 

I am writing this blog while on the airplane flying to South Carolina with one of my favorite humans from my Crossfit gym, and then tomorrow my sister meets up with us in Myrtle Beach. We are going to Myrtle Beach to go to a surgery center called Serenity Surgery Center, to have a procedure done called Cryoblation. This procedure uses a probe and ultra sound to find the tumor (don’t need that for mine J), to freeze the tumor with liquid nitrogen. I will be numbed up for it with local anesthesia, and they will freeze the tumor, let it thaw, and then re freeze it again. That causes all the cells to dehydrate, freeze to death, and then the thaw is when the water rushes into the cell with such force it bursts the cancer cells, and then it’s refrozen one more time for good measure. Essentially the surgeon just creates a massive ice ball, lets it thaw, and then recreates it one more time. This allows for very minimal invasion of the breast tissue, and the tumor will still be there when she is done. My body will then be responsible to clean up ALL the dead tissue from the tumor. This process also teaches my body to recognize the cancer cells that are alive, but the same cell as the dead tissue, encouraging my immune system to attack the live cancer. 

 

Here we are again- you’re wondering why we don’t do this on everyone. Well for most people you have to have a cancer with a tumor first of all. And most hospitals don’t do this procedure. Hennepin County (which I work for) only does cryoblation on liver or kidney tumors on the outside of the organ. Rochester Mayo is just starting a trial for cryoblation on some cancer patients but you also have to had gone through all the chemo, radiation, surgery etc and prove it didn’t work, in order to be eligible to be a part of that trial. So, here we are. On a flight to Myrtle Beach with a hotel on the water for our enjoyment and time to rest pre and post procedure. The procedure should take about an hour, and we are learning what recovery will be like when I’m down there. One could actually drive if they wanted to after the procedure. My surgeon said she is concerned because I have heavy skin involvement of the tumor, because the tumor is directly under the skin. She is concerned for me having a frost bite wound, that could be painful and will take some time to keep clean and heal. I will NOT be doing anything in regards to chemotherapy until that wound is fully healed. This surgeon is known across the country for her skill and practice, and she is also friends with my doctor of osteopathy in Mankato. This procedure we expect to kill the entire original tumor, and it's blood vessels that bring life to it. We are under the belief that one the tumor "fire" is put out, that the other sites of cancer (listed below) will struggle to survive on their own without the "host" tumor, and die with other treatments. We know all 3 other sites in my body have responded positively to other treatments, but just continue to hang on because of the host tumor fanning the flame of life. 

 

Thanks to the friendship of my doctor in Mankato and this surgeon in Myrtle Beach, they also have another friend in common in the cancer realm. I am currently qualifying to be a part of an FDA approved trial for a vaccine, made from a tissue sample from the tumor in my breast. My friend Jenn who also had cryoblation by the same doctor I am for her breast cancer, ran into a man while at the clinic in Mankato, and he (Riley) is the CEO of a company developing vaccines using people’s cancer tumor tissue and then reinjecting it into the body so that your immune system will recognize it and kill it. Riley’s company has had huge success with melanoma patients and now they are moving onto patients with hard tumors like breast cancer. I don’t know too much about all of this right now, as it is really just the beginning but I could be flying to Greenville, SC for three months in a row as early as November for the new treatment (Shot). If you would like to know more about this just reach out to me personally. These vaccines normally cost $100,000 plus each, and are being done at a major cancer center in Mexico that utilizes eastern and western medicine to help people heal. I am thankfully a part of a trial and so I will not have to pay for the vaccines. Just for the flight and or hotel back and forth. 

 

As I am finishing this blog post I am in my hotel room with the sliding glass door to the patio cracked so I can hear the ocean waves crashing. My girl Amber from my gym down here with me and I walked 3 miles to the pier for an early dinner and sat on the pier and had fresh fish. She is enjoying being kid free for the weekend and relaxing, both of us struggling to keep our eyes open until a more acceptable bed time! J

 

This entire trip has been such a dream- kind of the “if I had endless money what would my treatment look like” - and this doctor/procedure is on that list. The ocean is a blessing with a nice hotel room, but I am often catching myself all up in my own head trying to tell myself this I real. This is happening. The tumor will be killed on Monday. Massive turning point in my journey to healing. I am more nervous than excited, but I’m sure Hannah and Amber tomorrow will be my best hype team to get me more excite than nervous. I am SO incredibly tired of living with this tumor, I can’t wait to lay on my stomach again, not feel it whenever I have my bullet proof vest on, not feel it with the seatbelt when I drive, but I am also SO excited to not have it hurt, be sore, wildly uncomfortable, stick out in my sports bra, or the skin to be all purple/where the tumor is protruding outwards. 

 

Thank you all for the continual support, every day is unique in its own highs and lows, and right now I am just focusing on what step towards healing I need to focus on each day. I love you all. 

Update on the numbers/cancer sites if you are curious. 

MAY 2023: 

**Left lymph node (level 5-location) in neck: 9 mm SUV 2.1

**Left breast mass: 3 x 2.2 cm SUV 8.0

**Right apical pulmonary nodule: 7.7mm SUV 1.5

Left sternum: SUV 9.9

AUGUST 2023:

**Left lymph node(s) in neck: 

sub centimeter (level 2-location) SUV 2.4- this one is back and forth if it shows up on a scan

(level 5-location) SUV 3.5

**Left breast mass: 3.2cm x 4.3cm SUV 11.1

**Right apical pulmonary nodule: 9mm SUV 2.9

**Sternum: SUV 8.4