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.
January 2024
I think this is the longest I’ve gone without an update. When I last wrote in October, I said I was a little manic-y.. I had recently ended treatment, which gave me several weeks of feeling decent. I hear it’s common to get a little energy surge as all those chemicals get out of the system. During this surge I got to go to Georgia to enjoy my son and new daughter-in-law’s wedding, I spent a few days in the Florida Keys with some loved ones, I went on a few little hikes, I sorted out a lot of cupboards, I even snuck off to France for a week! With only a few minor setbacks, I had quite a month!!! As expected, the surge petered out slowly. Now I am back to spending a lot of time in bed. My pain has been increasing, so we increased my pain meds. My lovely, caring, palliative care team is immensely helpful. I was having some depression as well, but seem to be doing better now for the most part.
I do get out a few times a week for a drive or to go to a store, etc. I’ve been spending an hour or two a day working on ancestry.com, doing embroidery, organizing photos, pouring candles, baking buckwheat bread, making lotions and lip balms and hanging out with my family. I have a new Bible study system I’m benefiting from as well called the James Method.
I’ll be having a scan in a few weeks to access where I’m at cancer-wise and then I believe that will be my last scheduled scan as they aren’t continued after active treatment is ended.
Well, that’s all for now. Thank you for checking in.
Found this old honeymoon selfie. Cabo San Lucas, 1991 - 34 years this month!
October 2023
Riding through these past two-plus years has been a rollercoaster with more slow clicks up a steep, grinding hill than anticipatory top-of-the-ride views or thrilling descents. This rollercoaster feels like one I imagine in a bad dream, abandoned in a jungle and overgrown with treacherous vines where people are looking at me saying or silently thinking, surely there’s a better rollercoaster…
But there’s not. I’m going to get on it. I’m going to shut my eyes and get on. People are going to try to get on it with me, but they can’t. It’s my ride. They clear the track a bit and try to fix the rails with glue guns. They reach out their arms. They offer water. The help is not completely futile, but it feels somewhat helpless for them and for me. Scary for all of us. Am I stupid for getting on? I don’t regret it. Am I brave? What better choice is there? I don’t mean to sound trite, but truly, I am not on this ride alone, even though my loved ones can’t get on the track with me. God is with me. He’s not my co-pilot. I believe He’s the pilot. The inventor and builder of the roller coaster. Maybe this ride is better than it looks from the outside? Maybe each hill, each vine, each twisted rail has purpose? I believe so. Do I know the exact purposes? Maybe a little, maybe sometimes, but not nearly everything. Not clearly. This is where faith comes in, I guess. I do know that my Savior suffered. If suffering is good enough for Him, it is certainly good enough for me.
How about you? What is your ride like? Nothing but fun? A super smooth ride? All fun and no pain? I’ll bet not.
When we found my cancer in June of 2021, I was told that without treatment, I didn’t have a lot of days left in this world. Like many, I chose treatment. As you know, or have heard, treatment is hard. Why do most people with metastatic, stage four cancer choose it? When cancer has spread extensively, the hope is to extend life while not drastically reducing the quality of said life. People often ask stage four humans (avoiding the word patient… we are more than patients, right?), “How long will treatment last?” Next comes the uncomfortable mic drop. There are three possible scenarios. It will last until I have run out of plausible treatments and then I die. Or until I can’t take it anymore and then I die. Or I die while taking it. Try explaining that at the church doughnut table! Be careful what you ask. ;)
People frequently ask what is cancer like for me? What is treatment like? It’s pretty hard to explain adequately. It changes a lot and takes up a lot of time and mental space of every day. There’s always something it seems. For example, I get a lot of head pain. Is it from the neck radiation I had which causes a host of issues? Or is it from the cancer in my cervical spine? Or is it from the cancer in the base of my skull? Is it from too many toxins introduced by various treatments? Is it because my system is depleted? I mean, who knows? I don’t. My doctor doesn’t. I do know that laying down with a heating pad helps a bit. Beyond that, it’s a mystery.
In summary, my treatment, etc. thus far:
So many scans
Chemo pills
Neck radiation
Endocrine therapy
Lung area drained multiple times
Surgically inserted pleural drain put in for two months
Semi-permanent port-a-cath surgically inserted
Biopsies - two liver, many in the pleural space, two skin
Enhertu infusions
Piqray pills which require diabetes diet and medication as well
Bone strengthening shots
Faslodex injections
Multiple ER visits
Many complementary therapies: acupuncture, mushroom therapy,
supplements, etc.
Various rigid diets
There’s more, but that’s what I can recall at the moment. These bullet points are brief, but as you know, each item represents a host of other ailments, side effects, etc. You will notice that there are no major surgeries. In general, stage four patients don’t medically qualify for surgery. (This list does not include my treatments from 2006/2007)
I mentioned above the reasons for stopping treatment, which leads me to my update. Three months ago I had a scan that showed a LOT of improvement. The scan looked good, but I felt TERRIBLE. So, last month I quit one of my therapies because it was unbearable for me. That was hard to do, because it is likely the medication that made the scan look so much better. Currently, I am on my last viable treatment option, which is a monthly injection called Faslodex. There are some chemotherapy infusions I could try when Faslodex fails, but I’m pretty sure I don’t want to take them. It’s possible when push comes to shove I will try one… I’ll let you know. I have a scan on October 19. If it looks the same or better than the last one, I will continue with the monthly injections. If it looks worse in any way at all, the injections will be cancelled by my doctor and I plan to go off of all treatment (But I do have the option of trying some different chemotherapies than I have had in the past).
I have some really good news couched in the sad news. Since I am off of the harshest cancer treatments and because I have reduced my pain medications due to the reduction of cancer seen on the last scan… I feel pretty good sometimes! I have a few good hours in row and sometimes a few good days in row! I can take little walks, go to the grocery store and work for hours on my computer! I even did three miles on a trail last week! A bit slowly, but I did it! My mind is much clearer and my body is a little better. I have some drive to do things. I have been given a window of time (length of which is unknown) and I’m so excited about it! Most of the last two years, I have been wrestling with the idea that I would never feel better, but only worse. As some of you know all too well, that’s a hard thought to have… one that can induce, sadness, grief, anxiety and lethargy.
I’ve been a little manic-y the past two weeks. Talking a lot, making short term plans, working on little projects. I’m not focusing on the future. Jesus said not to worry about the future because today is all we can handle in our mental space. ( I’m grossly paraphrasing.) It’s hard not to project into the future, but God is allowing me to stay focused on today. I feel happy and joyful. No dread at the moment.
We just had my younger son’s engagement party. The wedding is at the end of October. I’m getting to know my beautiful daughter-in-law-to-be. I’m leaving for a little road trip with my oldest daughter today. Last month was my niece’s wedding. I’ve got a few trips planned in the next month or two. I’m trying to hang out with friends and family a lot. I’m reading encouraging books. Studying God’s word. I am happy to feel “myself” some of the time!!!
I keep telling some friends and family, “Thank you for riding this roller coaster with me.” In light of what I’ve written today, maybe I should say, “Thank you for watching me ride this roller coaster.” Watching is sometimes harder than riding, don’t you think? Anyway, thank you, thank you, thank you. I have so much love and support that I am blessed by. More blessed than I can say.
But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Matthew 6:33 & 34
PS: Click Read More to leave a comment. Also, feel free to poke around the website for hikes, past updates, travel documents, etc.
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!
June 2023
Welcome back friends! If you are new, thanks for stopping by. Please poke around the website if you would like to know more about me, my illness and/or my faith. I’m going to make this update fairly quick today.
I took a two month break from traditional treatment while I waited to find out if I have a DNA marker that would allow me to use a pill-form chemo-drug called Piqray. When the test came back, it showed that I have the marker, which led to the start of Piqray, a potentially difficult drug. I have been on it for about four weeks, along with monthly endocrine therapy shots called Faslodex. So far the side effects of both drugs have been mild to moderate, but definitely tolerable. (I had decided before starting that if the SEs were too hectic, I would go off of the new medications.) I had a blood test last week which showed that my cancer marker went down significantly. This is the first time since starting treatment that it has dropped significantly! I am not going to reach any definitive conclusions about the drop until mid-July when l have a PET scan, the gold standard of cancer tests, BUT having the number drop is good news!!! (During my two month break, I continued with supplements, etc. and even added a few items to the regimen.)
I find myself having to learn to be still, to rest and to manage pain, which are all things I am not very good at!!! These assignments, so to speak, are slowly teaching me (hopefully) patience, a different kind of joy, reliance on others and reliance on God… difficult lessons, but definitely good and needed. Please pray for my upcoming treatments, for patience and for peace. I know there is much suffering in this world. Mine is a drop in the bucket. Thank you for caring about this drop!!!
After my PET scan, I plan to update here in more detail.
Thanks for checking in on me!
Julie
Kim (the bestest sister-in-in law and friend) and I in Mexico recently
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
March 2023 - Quick Update
Dear Friends,
I want to post a quick update since it’s been a few weeks. All of the tests and procedures were done as outlined in my last update. I now have a port-a-cath line and a pleural drain/catheter. I find these physically and mentally uncomfortable, but it’s part of the deal. Tomorrow I have an appointment to see if I can get the pleural drain removed soon. I hope so! Every three weeks I get a six-hour infusion cocktail. Enhertu, a targeted therapy, is the main drug I receive during these infusions. I am tolerating the infusions fairly well. I don’t feel great, but I don’t feel as bad as a lot of people do on this drug. On March 31st I will get a full body PET CT scan to see if Enhertu is working to lessen the amount of cancer I have.
Thank you for checking in with me. I’ll post an update in early April with the results from my scans.
Thank you for your care and prayers as we continue to trust in God’s plan for our family.
Love,
Julie
February 2023
Welcome! If you are new here, you will find my cancer timeline here: FAQs
Phew! A lot has been going on!!! As I mentioned, I have a new doctor who is located at City of Hope, Duarte, which is about an hour from hour house. With this change comes lots of tests, new meds and many, many appointments for the time being. Thankfully, this schedule will mellow out in another month or so. I think that the level of care I am getting is outstanding. There is a tangible advantage to going to a huge campus that specializes only in cancer which I hadn’t foreseen. Let me give an example. Cancer patients get sent to lots of doctors. If I am having chest pain, my last oncologist would have sent me to a local cardiologist. I could pick my own or she could recommend one. Next, we would call the office only to be told there are no appointments available for months. Then the oncologists office would call the office and try to jockey for a closer appointment, usually successfully. After these gymnastics, I would go to said excellent cardiologist, who does not specialize in cancer patients, and they would be a bit flummoxed at my scans. At City of Hope Duarte main campus, they have cardiologists (and every other kind of doctor) and these physicians only see cancer patients. Their specialized knowledge is so wonderful! Also, all appointments are made for the patient… no calling around trying to find available appointments! They also have state of the art equipment.
In the past few weeks, besides seeing my oncologist, getting my lung drained again, having several MRIs, several PET CT scans, having an ECHO and a liver biopsy, I also started chemotherapy! I had been hoping to never say that phrase again in my life, but I am. This medicine is a new type of chemo that has such good results for some people that I decided to give it a shot. Enhertu is a four hour infusion that I will receive every three weeks. My first infusion was January 29 and the next is February 17. I may or may not get really sick. I may or may not have lung issues. I may or may not lose weight. I may or may not lose my hair. You can guess for yourself which ones I want and which ones I don’t want! With the first dose I felt really, really sick for one day and a little sick for a few days. My hair is not thinning yet. So… that’s a good start to this med! Hopefully it will continue on in a similar way.
In the midst of this crazy schedule, we got some bad news when my scans came back. After being more or less stable for more than a year, my cancer load increased quite a bit since the scans from November. Things that had calmed down are now active again. There are new lymph nodes with cancer. The spots in my lungs have grown. Most concerning is a new 3” by 1” growth on the surface of my liver touching my gallbladder. This is what I had biopsied today to see if it is same kind of cancer or perhaps a different kind. (It probably is the same.) We got this news about a week ago and have been processing it. We are hoping the new chemo will attack this. I will have scans again in early May.
In the next week or two I’m going to get a picc line and a PleurX inserted. A picc line is sort of a semi-permanent needle that makes infusions and blood draws much easier. Currently these things are a bummer for me. They usually use my hand or wrist and they really have to dig because I have damaged veins. A PleurX is a semi-permanent tube that will be coming out of my side to manually drain the fluid on my lung as needed. This is something I “get” to do myself! Both of these devices are a bit of a bummer in my mind because they are visible reminders of being sick. They also need special care, so they can be a bit limiting. Neither one is terrible though. Actually they will make my life easier.
This month I was able to get away with my husband, brother and sister-in-law to a place where I could really relax. It was wonderful. I spent hours and hours in a body-temperature hot spring. I also made it to the wedding that I was hoping to go to, where I got to see lots of friends, which was a true blessing.
I realized the other day that in June we will have been at this for two years! I sense that my loved ones are worn out. They are helpful, cheerful, giving and loving, but tired I think. It’s hard for me to see them like this. It’s hard for them to see me like this. I think this trial is strengthening us all, but it’s still hard. I’m thankful that I get to see my immediate family, extended family and friends often. I have a wonderful community, but the fatigue is palpable. Thank you for remembering us in your prayers. I get so many encouraging texts and notes. Last month I wrote a bit about how life is beautiful and HARD! If you missed that post, you can find it here: Rejoicing & Mourning
Thanks for checking in, AGAIN! I hope these posts are helpful or informative or encouraging or something!!!
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.
November Update
This past Monday I returned from a truly spectacular Mexican getaway with my brother, my sister-in-law, my husband and my brother’s closest friends, who are also my friends. We had perfect weather and perfect everything. I’m no longer the one jumping on board for every adventure. Instead, you will find me by the pool. It’s been hard to adjust to my new, slow-paced lifestyle, but I’m trying! We stayed in the most beautiful home, which made relaxing so much more enjoyable.
On Tuesday, I had a PET scan, a blood draw and an appointment with my oncologist. In the cancer world there is much talk about scan-xiety due to worry, needles and/or claustrophobia. Thankfully, I do not have this issue. I cried a few times on Tuesday though. I just felt tired. Cancer tired. Cancer treatment tired. Tired tired.
My scan came out the same again! For a year now it has not been better and it has not been worse with the exception of my pleural effusion. If you read my last update, you know that I had my right lung sac drained about a week and a half ago. They insert a tube into your back between the two lowest ribs. I had it drained for two reasons. First, it causes a full feeling in my back, like I’m laying on a tennis ball. Secondly, it makes my blood oxygen saturation fall, which isn’t good. On my latest scan, the fluid shows the same amount of fluid and not less, meaning that it has already come back. I will likely have it drained again before too long. This pleural effusion will probably be an uphill battle from here on out. Unfortunately I developed a syndrome from the draining. I forgot the name of the syndrome, but it’s where the pleural sac (lung sac) has nerve pain after the procedure. The syndrome is characterized by all kinds of weird little things. A pain near my spine when a breathe deeply. A rubbing feeling in my lower lung. An occasional sharp pain into my shoulder or abdomen. Things like that. It might go away and it might not. I can deal with it better now that I know what it is.
Soon I’m going to have a blood DNA test to see if my body has become resistant to one of my medications (letrozole) because resistance is common after using it for one year. If I am resistant, this medication will be changed.
I recently wrote down my cancer history. Here is a link if you haven’t already seen it: History. As I reread what I had written, I realized that it’s a factual play-by-play. I have decided that I am going use this history in the Shadows section of this website as well, but I’m going to add my thoughts and feelings to it. My hope is that by doing this, it will be helpful to others who find themselves in similar situations. It’s going to take a while to write, so I’m going to publish it in sections. The first section should be ready soon.
I have published a new page to this website! I’ve begun adding some of the many travel documents I have made over the years. Check it out here: Travel Docs
Thank you again for checking in. Sometimes I am not good at getting back to people. If you have reached out and I haven’t responded, I apologize. Please feel free to try again. :) I and my family truly appreciate your care, time and prayers.
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.”
September Updates
September is almost over! I’ve had a few appointments and another scan this month. I was having increased pain in the liver area, so my oncologist wanted to get a better look at that area, thinking that the tumors had grown. Good news! They did not grow and are exactly the same as a few months ago. When they were looking at the liver, they did see three new bone tumors on my spine. I have quite a few bone tumors throughout my body, some of which are on my spine, but as I said, they identified three new ones. Bone tumors are much preferred to liver tumors, but still, it’s a bummer to hear there are new ones. Bone tumors can be painful and they can break easily, so I have to be super careful not to trip, fall, jump or over-exert. I got this new information from a scan report and have not seen my oncologist yet whom I will see in a few weeks. I’m thinking she might change my endocrine therapy medication, but I’m not sure.
I’ve been out of town a few times recently visiting friends which has been a nice change of pace. Mic and I are also planning on going to Mexico next month for my brother’s 60th birthday, which I’m looking forward to!
I have a new entry in the Shadows section that you can find here: Peace 2
Also, as a reminder, I’ve posted some of my favorite local hikes here: Hikes
As usual, thanks for checking in and being here for the long haul!
August Oncologist Appointment
Hi Friends,
This past Monday I had my monthly oncologist appointment as well as my monthly palliative care appointment.
My oncologist said I am the only person in her practice that has not gone onto a lower dose of endocrine therapy when at the point in treatment at which I am currently! She said I must have amazing bone morrow that’s keeping my blood good enough to endure this dosage of treatment! So there’s that, haha. Yay for the bone morrow! Anyway, as I mentioned in the last post, as far as the scans look, my cancer is stable except for my right lung plural effusion which has grown a little. Unfortunately, I am having more discomfort in my liver area for the past two weeks. If this continues, I will have additional scans.
A palliative care team specializes in long term pain management. My team is amazingly helpful with lots of tips and ideas to help me with physical comfort.
Even though there aren’t always a ton of comments on this blog, I can see in the analytics that lots of people are checking in… I really appreciate it! I’ve added a little post to the Shadows section of the blog. You can check it out here: Peace
July Scan Results
I got the results from my scan yesterday. Everything is the same except one area is a little worse. That area is called a malignant pleural effusion. I’ve had it all along but now it’s grown a bit. For the most part though, I am stable. Thanks for checking in!
July 2022
July 18 Edit: I now have my scan scheduled for Friday, July 22 at 8:15am.
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Thanks for checking in! I’m still waiting for my “quarterly” PET scan because my insurance has not approved it yet. When I get the results of the scan, I will send out an email notification for this website. If you are signed up for notifications, you will be alerted. Since there isn’t much to report from week to week, I plan to update here every month or so.
I do have some good news! For the past three weeks I have felt slightly better! I have been napping way less and have a bit more energy during the day. Thank you for your prayers in this regard.
I was encouraged by a quote I saw on FB recently by JC Ryle, a well-known, 19th century Anglican bishop. Here’s what he had to say about affliction:
Affliction is one of God’s medicines. By it He often teaches lessons which would be learned in no other way. By it He often draws souls away from sin and the world, which would otherwise have perished everlastingly.
Health is a great blessing, but sanctified disease is a greater. Prosperity and worldly comfort are what all naturally desire; but losses and crosses are far better for us, if they lead us to Christ. Thousands at the last day will testify with David, “It is good for me that I have been afflicted.” Psalm 119:71
The medicine of affliction can taste bitter from day to day, but if it leads us to Christ, it is indeed good for us.
If you haven’t heard my church podcast interview yet, you can find it here: Julie Hirtzel Podcast.
I haven’t added any new posts to the Shadows section, but will when I think of something I want to write. :)
I added a new section to the blog! I am sharing maps I have made for hikes on the Palos Verdes Peninsula. Check it out here: Hikes
Thank you for your prayers, visits, notes and all kinds of encouragement!
Maui - July 2022
June 2022
-Edited June 29-
Hi Friends! June 1 marked one year since my stage 4, metastatic breast cancer diagnosis. What a weird year full of transitions, good times, hard days, much fatigue and many, many blessings.
As I wrote before, the last PET scan showed that I am stable, meaning the same, meaning not better and not worse. The assumption is that the endocrine therapy I take is slowing down the growth of my tumors, keeping them stable. Thankfully I have less bone pain than I did a year ago! I’ll have another PET scan in mid-July.
People often ask about my physical state, so in answer to that, my main issues are: off and on extreme fatigue, liver pain, occasional headaches and moderate bone pain in various areas. I also get asked about my mental state... It changes from hour to hour. I’d say that having been at this for a while now, I’ve gotten more used to: my slow lifestyle, not feeling “like myself”, missing fun things, going to appointments, etc. On a positive note, I love being home and hanging out with my family.
I’m still planning some trips! Some people have rightfully assumed that my taking trips means I’m feeling better. Unfortunately, this is not the case. However, taking a slow-paced trip is a really nice way for me to spend extended time with friends and family. I leave this Saturday for a one week cruise to Mexico with my daughters! We are really, really looking forward to it. I’m also going to go somewhere with the boys in my family, hopefully in July. And… Mic and I will be, Lord willing, taking a trip with my brother and my sister-in-law in August. I have found I become very uncomfortable in the car, but can tolerate plane rides well, so planes (and cruise ships), it is! I am spoiled, I know!
*** Update: The cruise did not happen. The morning of the cruise my youngest daughter woke up with Covid! We had to pull out. With the blessing of my youngest daughter, we searched for the cheapest plane tickets for the rest of us to still make a trip with the time off my other two daughters had scheduled off work! The answer? Maui! I’m updating this post from a beach in Kihei. We will be back in LA this Saturday, July 2. . :)
If you haven’t heard my church podcast yet, you can find it here: Julie Hirtzel Podcast.
I haven’t added any new posts to the Shadows section, but will soon.
Thank you for your prayers, encouragement, kindnesses and just everything!
May 2022
Just thought I would check in here and let you know where things are for me. After a week of hyperthermia, I decided to stop having this therapy. While using the treatment I was beyond exhausted., however, this wasn’t the only reason I made this decision. The therapy has been studied with chemotherapy and radiation, but not with my treatment, which is endocrine therapy. So, not knowing how well it works with endocrine therapy combined with the fatigue and time the driving and treatment was taking, I decided to stop.
A lot of people ask me what my days look like. The answer isn’t simple. Some weeks I go to doctor’s appointments daily. Other weeks I have nothing on my schedule. Some days I sleep most of the day. Other days I do chores or hang out with friends and family. Sometimes I have bone and/or liver pain. Other times I have fatigue or headaches. Other times I feel decent. Thankfully, the past two weeks I have had many days where I’ve had energy in the morning! It’s been wonderful. I’ve used these times of energy to organize my house and backyard. I have not been working since last June and just recently applied for permanent disability.
I recently was interviewed for a podcast that my church does to interview members. It was fun, but wayyyyyyy out of my comfort zone! If you would like to listen, you can find it here: Podcast Interview
Lastly, I am told daily that I don’t look sick. I appreciate that, but it’s weird to be so sick and only those that live with me can really tell. I wrote a piece about this strange situation here: Looks Can Be Deceiving