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.
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
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
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!
Update from Julie
Hi Friends and family! Here’s the latest on my treatments and life in general.
As a recap, I have stage 4 breast cancer. It started in my reconstructed breast’s scar and moved to many lymph nodes, my liver, one lung and multiple bones. The liver is the biggest concern as far as length of life. Previous to my diagnosis, I had been concerned about some pain I had been having. Multiple scans this past June revealed that my previous cancer from 15 years ago had spread. In June I started on oral chemotherapy and had some radiation. We recently found that the chemo wasn’t making any progress, so we switched to endocrine therapy. There are more details in previous updates. I also added a section recently to this website called Shadows where I am hoping to encourage others in their trials.
Right now my treatment includes a monthly blood draw, a monthly infusion for bone strength, two daily pills to suppress estrogen and various natural treatments. The side effects are fairly minimal. The bone strengthening shot can make me feel flu-sick for a day or two. The pills can make me sleepy and give me extreme dry-mouth. They can cause other side effects, but I have not experienced these as of yet. The bone cancer causes significant pain in my ribs, tailbone, pelvis, neck, clavicle and sternum. The mets in my liver cause a burning pain that comes and goes. I take an opioid to control these pains. The medication alleviates most of the pain and doesn’t make me feel too kooky. So, physically speaking, I have slowed down a LOT, have some fatigue and some breakthrough pain, but overall I don’t feel terrible much of the time.
I am thankful that I have the time, the insurance, the money and the people to help me take care of myself. I can’t imagine doing this without this type of support system. I am blessed beyond measure.
People have asked how I’m doing and what I’m doing. Those are complicated questions, but I’ll try to explain. I’m on disability and not working at my job. I spend a lot of time resting. When I lie down, I can only lay on my left side, so that is a challenge as my left side gets sore, falls asleep etc. I found this funny little pillow with a hole in the middle that takes pressure off of my left ear which has inflamed cartilage from laying on it so much. Anyway, there’s probably a hundred little things like this to deal with. I guess what I’m saying is, a lot of my day is taken up with resting, taking vitamins, figuring out how to lessen some of the little side effects, etc.
I’ve been visiting a lot with friends and family. I’ve been on some trips. I try to get out a few times a week to the beach or to a nearby city with a friend for lunch… Things like that. As a matter of fact, I’m in Mammoth this weekend with my son, Neal and my sister-in-law, Kim. Spending time with my loved ones is a top priority. Getting out of town helps distract me from some things (which is nice), but I also really like being at home. We’ve lived there so long, it’s a place of good memories with friends and family. It’s sort of like a little cocoon for me. The days kind of blend into one another. I keep telling myself I’m going to make my time more structured, but that’s not how it’s working out for now.
The above kind of tells you what I’ve been doing. How am I doing? I mean, that’s a hard one. I’m doing my best? I’m sad and tired and fighting pain, but I’m also joyful and happy and thankful and surrounded by loved ones. As I’ve said before, I truly trust in God’s sovereignty, but that doesn’t mean I don’t grieve the losses of which there are many. There’s the small losses like not driving and not hiking and not working. Then there’s the big losses like facing mortality, the necessary changes in relationships at this point in life and realizing that things will likely never get back to “normal.”
I also have a keen awareness, that I’m not the only one going through tough things. 2021 seems to be a hard year for so many people that I know. May we all learn from God’s refinement. May we all consider it pure joy when we face trials for many kinds. May we all reflect Christ’s love in our suffering. May we all encourage one another toward joy, trust and love.
Many have asked how they can pray. Please pray for my family because I know that ultimately this will be harder for them than it is for me. Mic has been amazing. He is such a support to me. My kids are no longer kids, but mature, loving, giving adults. They are some of my best friends. It’s so hard to see them in pain.
Psalm 34:1-5
I will extol the LORD at all times; his praise will always be on my lips.
I will glory in the LORD; let the afflicted hear and rejoice.
Glorify the LORD with me; let us exalt his name together.
I sought the LORD, and he answered me; he delivered me from all my fears.
Those who look to him are radiant; their faces are never covered with shame.
