End of March 2024 - The H Word
Wow. So much has happened since my post about two weeks ago. In truth, a few days ago I thought that I would probably not be doing any more blog updates personally, yet, here I am! (Queue lyrics by Chumbawamba, “I get knocked down, but I get up again, you are never gonna keep me down…” lol… a silly song that runs through my head more than I would like to admit.) A little more than a week ago I ended up taking an ambulance to the ER at Little Company. On the second cycle of the new targeted therapy that I mentioned in my last post, I had tremendous side effects as well as increased cancer issues at the same time. I don’t have the energy to describe all of these side effects, but suffice it to say, this was one of my worst experiences yet, from which, I am still recovering. But I will say, one issue I was having was intensely increased pain, therefore much of the time in the hospital was spent introducing and adjusting to new, stronger pain medications. Adding to the terribleness that I was experiencing is the fact that some hospitals seem to be in a bad way these days. I spent three nights in an overflow area that had one restroom for 12 beds and no showers!!! Due to this, the level of care was substandard to say the least (though many of the hardworking nurses were trying their best with what they were handed). Anyway, I do not think it is wise to continue on this new medication, so as I have mentioned before, I am out of treatment options other than chemo infusions, which I will not be taking.
(AN ASIDE: I mentioned in my last post that I am personally not interested in harsh chemo with advanced stage four. I want to clarify a bit because I received some kickback in my messages for this recent statement. I am not against chemo. I have taken lots of it. I do think they will come up with something better some day (and they are), but for now, it is the standard. It’s funny… when you have cancer, a lot of people have medical advice they want to give because they truly care. In my experience I’d say about 70% of said people are pro-western medicine protocols, fervently believing that a person is “giving up” if they don’t take every possible medicine and procedure available to them for “the battle” they are fighting. Then about 25% of people fall into the “take western medicine, but you must add a lot of other therapies to it” such as: cannabis protocols (RSO, THC, CBD, etc.), numerous herbal protocols, hyperthermia treatment, Metformin/berberine pills, copper therapy, baking soda/molasses protocol, hyperbaric oxygen treatment, coffee enema protocol, mushroom micro-dosing, broccoli/sulforaphane pills, apricot seeds protocol, various ivermectin/fenben protocols, soursop tea, essiac tea, pectasol tablets, turpentine protocols, various protocols to lower PH, dietary therapies (no sugar, no meat, only meat, high carb, low carb, vegan, etc.), 7 day fast protocol, 3 day fast, intermittent fasting, cottage cheese/flax seed protocol and the list goes on. And… all cancers are not alike. For example, there are some promising cannabis protocols, but these same protocols do not help and may even worsen the category of cancer I have: hormone positive. I have studied/given time to all of the alternative therapies mentioned here (and more) and have implemented more than a hand-full of them. In the world of alternative therapies I find it very difficult to decipher success stories from anecdotal success from sensationalism from, sadly, straight-up, very expensive scams. Then, about 5% are the alternative therapy only folks. No chemo, no or maybe surgery, no radiation and yes to one or many alternative therapies. Each group is quite passionate! All of this information is a lot to navigate when you are the one with cancer, especially if you know a lot caring people. Like I said, I believe people give information out of love and concern, but it can be overwhelming on the receiving end. So overwhelming, that I am taking the time to write about it during this stage of my life! Does this mean never give any interesting information to a sick person? Probably not. Asking if a person wants more input is probably a great place to start. I don’t know the right answer, but for me, at the beginning I asked for input from my closest family and friends. Together we researched, discussed and came to conclusions. Is there a one size fits all answer for things like this? Just know that the patient may be receiving a lot of input and they may be exhausted. For me, I can even feel guilty for not taking someone’s advice. (Please don’t feel bad if you have given me input! I know it was in kindness and I may have even tried it. Truth be told, I’ve given this type of advice before!!!) I guess there is another group of folks (even though I’ve run out of percentages, ha ha)… the ones like me… not really sold on any of the options, but just doing the best they can. Anyway, the following link explains, more or less, how I think about chemo for “advanced” stage four breast cancer in particular. https://link.springer.com/article/10.1007/s11606-019-05158-5 )
Back to the issue at hand. On the fourth day (Friday) of being in the hospital purgatory area, I decided to go home on hospice. I know. Hospice. It doesn’t seem real. My palliative care team and one amazing friend in particular made this happen in a matter of hours, while at the same time, my family was getting the house ready. It was quite the whirlwind morning to say the very least. Coming home strapped down in an ambulance is hard. Really hard. Really, really hard. I could see some of my neighbors from the gurney. I saw family members waiting nervously at the door. Even our dog seemed anxious. Coming home in an ambulance may be hard, but coming home is wonderful. A true glimpse of heaven. I could not be more thankful for the home and family I have been given.
The aforementioned friend explained my hospice situation to a text group of mine beautifully and succinctly. She wrote:
Thank you for your prayers. After some pain control was figured out in the hospital, Julie decided on her own to go home with Hospice Care yesterday morning. She is no longer going to be on cancer treatment.
To clarify the H word. It’s a service in which people have a diagnosis of 6 months or less. People survive beyond that and can be on it for a couple years. Some people decide last minute to accept hospice and therefore it is a short period. (any questions, you can ask me, I transition people to hospice as part of my work with Palliative)
Julie, has not accepted Hospice at the last minute. She qualifies because she is no longer doing treatment. She will have good care to manage her pain and check on her more often. Julie is strong. She walked up her steps to her bedroom when she arrived home. She looked comfy in her bed yesterday with good color and smiling, chatting, even had some tapioca pudding.
Please continue to pray however the Lord leads you.
So… that’s the state of things. The past few days have been exhausting with many, many in-home appointments (necessary), visiting with my beautiful family (needed), but mostly dealing with physical and emotional pain. Today I turned a corner. My physical pain is getting under control. My home health care visits will only be weekly now. I had a nice long catch up with one of daughters tonight and it didn’t completely wipe me out! My family is taking SUCH GOOD care of me. I’ve needed help with almost everything the past few days. They have been exceptional with an extra call-out to Mic. Wow! He is taking the brunt of it all and truly caring for me as he deals with his own sadness.
I don’t know If I will personally be writing anymore updates. I might try though as I find writing cathartic. We shall see.
As always, thanking you for checking in, praying and caring.
Julie
P.S. If you are new-ish here, please poke around the blog. If you would like to know me better, check out these posts: https://www.juliehirtzel.com/shadows/my-story https://www.juliehirtzel.com/shadows/looks-can-be-deceiving-13 https://www.juliehirtzel.com/faqs My Instagram: https://www.instagram.com/julieannehirtzel?igsh=OGQ5ZDc2ODk2ZA%3D%3D&utm_source=qr
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Psalm 23:4
Mic and I headed out to a “prom” costume party a few years ago.
May 2023 - The End of Treatment?
Dear Friends,
So much has happened since my last update. If you want the nitty-gritty outline of my cancer treatment thus far, read here: History As you may remember, in January I switched my care from City of Hope Torrance to City of Hope Duarte. My new oncologist wanted to make sure that we leave no stone unturned, so right away I had lots of tests run. In addition I started a new, promising targeted chemotherapy infusion every three weeks called Enhertu. I also had a pleural catheter put in to drain the fluid that was collecting around my right lung. After twelve weeks of infusions we found that the new drug was not working as hoped. On the other hand, the pleural catheter helped a lot and I was able to have it removed. I am no longer collecting large, uncomfortable amounts of fluid. Yay!
Unfortunately there may not be any more treatments that will benefit me appropriately. My last infusion was four weeks ago. Last week I had some blood drawn to check for a mutation that I may or may not have. The test will be back in a week or two. If it comes back with the mutation, I may try one more medication. For now, I am taking a treatment break. The good news is, I feel a lot better! I still have cancer pain and fatigue, but gone are the headaches, joint pain, scalp pain, extreme fatigue, etc., etc., etc.
Today I am leaving for a one week getaway with my husband, brother and sister-in-law. I plan to do a lot of relaxing while I relish time with my loved ones in sunny Mexico.
If you are new here, please note the other sections of my website including maps for local hikes and some of my thoughts on life during hard times.
Thank you for checking in. We all feel very loved and supported by our friends, family, church family and neighbors. We firmly believe that the Lord has a purpose in all of this though we may not fully know all the whys.
With love and gratitude,
Julie
January 2023 Update
Lots of new stuff going on, medically speaking! Here’s a synopsis:
At the beginning of the month, my City of Hope Torrance oncologist told me she is retiring at the end of the month! I happened to have a second opinion appointment with a well-known oncologist at City of Hope Duarte scheduled in the middle of the month. On the drive out there, I said, “I would never make Duarte my main campus.”
But… I liked the doctor at Duarte so much… he’s my new oncologist! He’s an older man who specializes in breast cancer (as opposed to all cancers) who is very caring and extremely intelligent. He gave us his personal cell number and I have talked to him several times since!!! Today he called me personally to give me some news AND asked how I am feeling!!!
The third week in January I had a lung sac draining (thoracentesis) scheduled. The day before the procedure I crawled into ER with extreme heart pain. It’s a long story, but probably the fluid on my lung was causing the pain.
The following day I had my right lung pleura drained after insisting they were not to drain the left, which is what the order said. The procedure went well., though it does cause prolonged discomfort. My new doctor had the fluid tested to see if it was HER positive. It is, which means I will be starting a new medicine.
Upcoming events:
Tuesday, January 24 - Heading to a cool resort with Mic, Neal and Kim for two nights. I’m pretty excited about this.
Friday, January 27 - Probably getting my first infusion of the new medicine. It’s called Enhertu. Doctors are very excited about it. It’s not chemotherapy, but is similar. Many people have bad side effects. Some do not. The new oncologist said I will only be on it a while. He’s hoping it will reverse some of my “cancer burden.” I’m hoping I won’t get too sick from it. Oh and some people lose their hair or have thinning. So there’s that. I’m going to will that not to happen! ;)
Monday, January 30 - My new oncologist feels it is important to repeat tests that I had done more than a year ago. On Monday, I will have full body PET CT and lab work done in Duarte. My good friend is going with me and we are staying the night out there.
Tuesday, January 31 - I’ll be having MRIs to the abdomen, brain and spine.
Thursday, February 2 - Heading back out to Duarte for a liver biopsy and a consultation with a lung surgeon to find out if I should get a permanent drain in my lung sac (pleura).
Friday, February 3 &4 - Hoping to make it to a special wedding.
So! Lots going on. Thanks for checking in. Please pray that the new medicine would work and that I would be able to tolerate it well.
Thank you.
Julie