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.
March 2024 Update
(I wrote this towards the end of February. I’ve hesitated to post it until now. There is an updated addendum at the end.)
I wasn’t sure I’d make it to 2024. I know… none of us know if we have another hour… But, I’m talking about the likely progression of my disease. (If you are new here, you can find my cancer history above where it says, FAQs/History) For example, last January I had a fairly serious metastatic pleural effusion (cancerous fluid around the lung). According to stats, 73% of people with metastatic pleural effusions are dead within one year. Life expectancy of liver metastases? Four to eleven months from discovery. Life expectancy of skin metastases with metastatic breast cancer? Less than one year. The statistics go on. You get it. Discouraging numbers. The medications and procedures I’ve been given have helped to extend my life during the two and half years I have been receiving them. Last fall one of the therapies shrank my total cancer burden quite a bit! In late December of 2023, I stopped all treatment because I had burned through all the types of medicines available to me except for chemotherapies. I’m not open to taking chemotherapy infusions for stage four cancer. This past week I had a PET/CT scan which showed that my cancer has been aggressively growing since my last scan three months ago. I’m going to give you the nitty-gritty details of the medical side of my life, but not yet. I know some of my loved ones want to know everything, others do not and I understand both positions. So, I guess this post is for those who like a lot of information. For me, knowledge is power. (How many of you just heard the School House Rock song in your head?) Some people assume that my detailed research means I am obsessing, but that is not the case. I don’t research in a frenzy with anxiety. Research and knowledge make me feel prepared. Prepared for what? Pain. Side effects. Grief. Sadness. Death. How about you? Do you like to know all the facts or would you rather not?
This past Sunday I made it to church. I haven’t been much lately because I’m often just not feeling well enough. Today I doubled up on my opioids and off I went. (Now there’s a sentence I never thought I’d say.) Towards the end of the service we sang, It Is Well With My Soul, a profound song that was written by a man who had recently lost his children in an accident. The lyrics are moving for the Christian whether this is the first time reading them or thousandth.
When peace like a river, attendeth my way
When sorrows like sea billows roll
Whatever my lot, thou hast taught me to say
It is well, it is well, with my soul
It is well
With my soul
It is well, it is well with my soul
Though Satan should buffet, though trials should come
Let this blest assurance control
That Christ has regarded my helpless estate
And hath shed His own blood for my soul
It is well (it is well)
With my soul (with my soul)
It is well, it is well with my soul
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole
Is nailed to the cross, and I bear it no more
Praise the Lord, praise the Lord, o my soul!
It is well (it is well)
With my soul (with my soul)
It is well, it is well with my soul
It is well (it is well)
With my soul (with my soul)
It is well, it is well with my soul.
When the Christian states that they are at peace, or all is well, etc., I don’t think it means that they are in a state where they have perfectly achieved these things. It is more a state of being or a position. As a child of God, I have been given His peace. I believe that God is bigger than my problems. He can hold me in a place of being soul-well, if you will. I can truthfully state that I am at peace, yet still have sadness, pain and insecurities. So, I want your know, it is well with my soul. It is well with my soul.
Back to the medical side of things. When I had my first scan in this metastatic journey, the report said that I had “innumerable” liver lesions. Innumerable is a word that hits hard! I mean, what do they mean? They actually can’t count them? They don’t want to take the time to count them? Whatever the reason for choosing this particular word, it. is. not. good. A few months ago, I saw the word innumerable again, but in reference to bone lesions (tumors). :/ This most recent scan used the word again, but in reference to pulmonary micro-nodules (small lung tumors). Throughout the past years the scan results have ebbed and flowed, but this last scan was not “good”, to say the least. A hard providence, so to speak. Innumerable liver, bone and lung tumors. My oncologist said that my liver “lit up like a Christmas tree.” Festive. The cancer grew very fast in January while I was having no treatment. Much faster than anticipated. As an aside, since December I have been hitting the alternative treatments with increased vigor. Lots of special teas, supplements, therapies, etc. Sadly, it does not seem as though they helped.
On the maybe-up-side-of-things a new non-chemo medicine came out that I am going to give a try. It’s called Truqap and I’ll start it later this week. It’s so new that not a lot is known about it. I’m taking it as sort of a, why-not? Obviously, it has been through many trials, but when I say not much is known about it, I just mean it’s new. If there are a lot of side effects, I can stop it. Also, I’ll be starting a short round of radiation in a few days. Did you know that radiation is often given palliatively for pain? I’ll be getting it to my right iliac wing (hip bone area). Got my tattoos today! Yep. Radiation tattoos. They are all the rage… you should look into them. Lol.
I had a little get away in the San Diego area this past weekend with two of my girls. We had a GREAT time, but it was also really physically challenging.
It is well with my soul.
Update on 3/9/24:
I finished my palliative hip/tailbone radiation and it seems to have reduced the pain in that area! I have also started my new meds. I initially had some medication side effects, but now they are minimal. However, the cancer side effects have increased. For the past few weeks, I have needed to spend almost the whole day in bed, with only an hour or two in other parts of our house. Walking more than a few minutes is not currently happening and even riding in the car has become challenging. I have upped my pain meds and feel decent in bed, but as soon as I try to do anything else, I’m quite uncomfortable. It is difficult to share this news.
P.S. It is tiring for me to respond to texts and calls. Please feel free to reach out… I love hearing from people, but also know it might take me a while to get back to you.
August 2023
Thanks for stopping by. I can see in the analytics section of this website that people are checking in here… I’ve been trying to write up all that has been going on and trying to explain all that is floating around inside of my head, but I just can’t find the right words. While I continue to search for those words, I will give a quick update.
For the past few months I’ve been on Piqray, Fulvestrant and Metformin. I’m not having the “hospital-visit” side effects, but boy am I worn out with an array of all kinds of weird side effects, big-ish to small. All the issues are making me want to stop all treatment. Yet, in the meantime, a month ago I had a PET scan that showed that these meds have greatly reduced my cancer! I haven’t really celebrated though because I’m barely out of bed. Anyway, I will probably greatly reduce the meds I’m on very soon and see if that helps me to feel better for a time.
I am trusting in God as He walks me down this road. I am learning to appreciate life without contributing to my family, friends and church like I used to. Pushing my mind and body to my limits has been a life-long pattern for me, but not anymore. Well, I still push to my limits, but those limits are close at hand at all times. I am trying to learn who I am in Christ when so much of who I thought I was is gone. It’s a hard lesson, but fruitful.
Once again, thank you for caring, for praying, for visiting, for reading and for helping. If you like, please look around the website to read more of my story, learn about my faith, learn about my cancer or even to find some fun hikes!
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
End of ‘22 Update
Wow! It’s the end of 2022! It’s been quite the year for me. ;) How about you?
If you are new to my site, here is my cancer history in detail.
In my last update I mentioned that I would be getting my lung drained again. I had it done a few weeks ago. It is an uncomfortable procedure. It makes me feel better in some ways, but also hurts in other ways. I will probably be getting it done again in January. I have a malignant pleural effusion, which is cancerous fluid surrounding the lung.
I also wrote that I would be starting Piqray, a medication that brings on diabetes. I went to a specialist to learn all about diabetes as I knew almost nothing. As I was gearing up for this change in medications, we found out that my blood mutation (Pik3Ca) changed, making Piqray a no-go for me. Honestly, I was a bit relieved. I am going to stay on my endocrine therapy for now (Ibrance and Letrozole). These medications have stopped the growth of most of my cancer, so I will continue with them for now. The areas they have stopped working on are my pleural effusion and my skin lesions.
Anyway, for now, I will continue with my endocrine therapy as well as getting my lung drained now and then. The side effects I experience change from hour to hour. I often get asked about how I feel and it’s hard to explain exactly. Sometimes I have grinding bone pain, other times lung, liver or neck pain. Sometimes I have extreme fatigue, sometimes only subtle fatigue. Sometimes I have nausea. Sometimes I get migraines. Sometimes a few of these things happen together. Once in while I don’t have any of these side effects. I asked my oncologist if this is normal and she said it is.
Thanks for checking in! I wrote an end of year post in my Shadows section as well. You can find it here: Yay?
Much love and many thanks to all of my friends and my family.
Julie
Marisa, Meg and Julie on Christmas Day 2022
Another November Update
I’ve got a few updates as well as some new information to share. If you are new to my site, thanks for stopping by! You can find a medical synopsis here: Cancer History
As I mentioned in my previous post, I had the fluid around my lung drained a few weeks ago. Unfortunately, it came back rather quickly. As soon as insurance approves it, I will be having this procedure again. The procedure is rather uncomfortable. After some numbing shots, a tube is inserted from my back, between the last two ribs, into the lung sac. Immediately after the procedure, my right lung was sore. Sore like a sore throat, if you can imagine that. Kind of weird. Then I had two, not-so-common side effects. First, my lung and the sac began rubbing against each other which has a slight grinding sound. The rubbing causes inflammation which in turn causes pain. Second, a nerve became inflamed and sent shooting pains into my shoulder and abdomen. Both issues have lessened but not resolved. So now I’ve got the uncomfortable fluid in the lung as well as the side effects! You might wonder why I would want to get it drained again at this rate. The fluid causes a lot of pressure and it also causes my blood oxygen rate to drop, so it’s important to try to get rid of it again.
When a person has stage four cancer, their primary cancer is growing in other parts of the body. One of the places my breast cancer is growing is in my skin. The skin lesions have grown recently which indicates that my current medicines have stopped working. In the next few weeks I will be switched from endocrine therapy to something called Piqray. As the oncologist was explaining Piqray to me she mentioned that it caused diabetes. I asked how many of her patients who take it have developed diabetes to which she answered, “all of them.” Honestly I was floored. I have never heard of such of thing. I really don’t want another disease! This little tidbit of information has been quite hard for me to digest. For those of you who are against or hesitant about western cancer medicines, I’m sure you think this is crazy! I agree! However, it is the only medicine being offered to me at this point, so I’m going to give it a try. After this medicine, there is one more I can try. I’m tempted to skip the Piqray and go straight to the other one, but after thinking about it, it seems best to try both. Sometime in December I will go to a class on diabetes and then start the new medication. My doctor says I can probably manage the diabetes without insulin, so that’s good. I don’t think I’m naturally someone who will be great at checking my blood sugar on a schedule, eat on a schedule, etc., so I’ll need to figure all of that out.
I’ve also been having a lot of issues with my neck and the base of my skull where I have some cancerous bone lesions. I get pain, a “buzzing” sound, headaches, etc. I’ve found that if I don’t move my head too much it helps. So if I look kind of stiff, you’ll know why!
Having mentioned the term “western medicine” above, I think I’ll talk about my philosophy on medicine for a minute. I am using everything that western medicine has to offer me. I understand people’s concerns about some of these therapies/modalities. In fact, I share many of the concerns, but also am willing to give them a try for lack of other options. I am additionally using/have used a fair amount of natural remedies though I don’t talk about them much. I will say that people kindly offer me natural/homeopathic remedies almost daily. I research most of them and have implemented some. It’s super hard navigating all of this though for multiple reasons. I have had more than a few loved ones die soon after trying extreme natural treatment plans. (To be fair, they were very sick when they started the plans.) I have, of course, also known people who have died from cancer who did not not try any natural treatments. It’s hard to know what route to take. To complicate things even further, each natural clinic or treatment plan seems to be different from the next, making it even harder to figure out. I had some experiences as a young person that have given me pause and kept me from jumping head first into, really, anything medically speaking. Honestly, I think I can say, I don’t really, fully believe in any of it. Rather I want to trust in God and do my best with what I have. My trust is not in any one doctor or any one prescription or any one natural remedy.
I know this post is getting long, but I’ll share some of the aforementioned experiences with you anyway. :)
The first experience had to do with my mom who had a long fight with cancer which ended when she was 53 and I was 17. She fought hard. She was not okay with dying. She tried everything her doctors offered and let me tell you, in the 1980s, that was some crazy stuff. Her cancer kept coming back more aggressively. As she worsened she decided to go away for a while to a homeopathic cancer center where she was put on a strict diet, did daily coffee and wheat grass enemas, went through talk therapy and more. I don’t know where she got the money to go there, but she was a fighter and somehow she made it happen. I saw a big decline in her health after going to this place and she died soon after. Personally, I think it was too radical for the state she was in at the time. Maybe it would have been more helpful if she had gone sooner, but who knows.
The other experience wasn’t about medicine, but faith, and in a way, “treatment.” It involved a relative who was dying of cancer being told that if they had more faith they would be healed. When this beautiful woman died, I felt so sad knowing that she may have thought, as she was dying, that she didn’t have enough faith. Almost as soon as humans were created, death became imminent. It is part of life as we know it. I do not long to die. I don’t feel ready. I will use the tools given me to try to live as long as possible. However, I do also know that we will all die. I believe heaven will be a wonderful place to be and that is a comfort.
As I’ve read many cancer patients posts and blogs in the past few years, I’ve come to think we are all trying our best, in our own ways, with the tools we have available.
I feel so weird writing all these things out. I don’t want to sound like a know it all. It can be hard to let the world know my personal stuff. I don’t want to be insensitive to others. I don’t want to seem self-aggrandizing. The doubts go on and on. Then, I remind myself how helpful it is for me to read other people’s life stories and I hesitatingly push, “publish”, letting my life story go out into the world wide web with a hope and a prayer.
2 Corinthians 4:18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
October Updates
October has been a month of ups and downs! I’ve had several difficult episodes with cancer related stuff, but have also had some really great times with family and friends.
The downs…
A few weeks ago I had one of my throwing up/ head pain episodes that was probably the worst one yet. I personally think these events happen because C2 (a neck bone with cancer which was radiated) has a reaction when I use my neck a lot in one day.
This past weekend I was in the hospital for two days due to pain from the malignant pleural effusion I have. It took two days of waiting, but they were finally able to drain the fluid around my lungs. Then I had a very painful, uncommon reaction that lasted about a day. Now I feel better than I have in quite some time! It turns out that having your lungs make enough oxygen feels pretty good!
My red and white blood cell counts are fairly low, which adds to my fatigue.
The ups…
My brother turned 60 this month!!! Our whole family had a great time celebrating on a fun family trip.
In two days, Mic and I are leaving on another vacation with long time friends as well as my brother and his wife. We are staying in a really cool house in Punta Mita, Mexico. I’m really looking forward to the warm water!!! Now that I can breathe a little better, I anticipate being able to do a little bit more.
The day after we get back from Mexico I have my three month PET scan as well as an appointment with my oncologist. We are hoping the scan shows that the cancer remains stable. I’m so thankful that God has give me peace throughout this journey.
I wrote up my cancer history as some people have asked me about it. You can find it here: Cancer History
I haven’t written anything new in the Shadows section, but if you missed last month’s entry, here it is: Peace
Much love and many thanks,
Julie
John 14:27, the words of Jesus
“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”
