A Quick Update
Hi Friends… Julie here for a quick update. I’ve been on hospice now for almost eight weeks. (As a reminder, hospice is basically started when no more oncology treatments will be given and comfort becomes the main goal for the terminally ill person. I am still doing some natural protocols.) It’s been a weird two months to say the least. Some days I am riddled with pain and sometimes vomiting, etc with so, so much fatigue. Other days I feel almost normal if I stay still. What remains a constant is that almost all movement will trigger pain and fatigue. I can get around the house slowly, but if I try to do a little cleaning or anything, I will pay the price for a few days with severe pain on the right side of my torso. You may wonder what I do with my time. I visit with my Mic and my kids a lot. My extended family comes by a lot just to hang out. We set up a few visitors a week. I stream a lot of shows. Reading is difficult. I listen to the Bible app and hymns. I pray and pray some more. I occasionally do a little writing. I sleep. And then I sleep more. Honestly, I probably sleep more than I do anything else. I feel calm most of the time. Yet, seeing the sadness in my family and friends is heart-wrenching. When I am with people, we are generally spending time in “a house of mourning.” All of my interactions are heavy, which you can imagine, is difficult. There is not a way to “fix” this. It is where we are. Of course there is some laughing, some chit-chat, but it is heavily clouded.
Physically I don’t feel like I am doing worse in the last eight weeks and not better either. It’s all very up and down and hard to measure. I hope to share more soon, but I just wanted to let everyone know what’s been going on. We are thankful for all the help people have been giving us… prayers, cards, lots of meals and more. We appreciate you all.
I will leave you with these verses from the Apostle Paul from 2 Corinthians, chapter 4:
It is written: “I believed; therefore I have spoken.” Since we have that same spirit of faith, we also believe and therefore speak, because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you to himself. All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 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.
May we all be renewed inwardly day by day!
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.
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!!!
End of ‘22 Update
Wow! It’s the end of 2022! It’s been quite the year for me. ;) How about you?
If you are new to my site, here is my cancer history in detail.
In my last update I mentioned that I would be getting my lung drained again. I had it done a few weeks ago. It is an uncomfortable procedure. It makes me feel better in some ways, but also hurts in other ways. I will probably be getting it done again in January. I have a malignant pleural effusion, which is cancerous fluid surrounding the lung.
I also wrote that I would be starting Piqray, a medication that brings on diabetes. I went to a specialist to learn all about diabetes as I knew almost nothing. As I was gearing up for this change in medications, we found out that my blood mutation (Pik3Ca) changed, making Piqray a no-go for me. Honestly, I was a bit relieved. I am going to stay on my endocrine therapy for now (Ibrance and Letrozole). These medications have stopped the growth of most of my cancer, so I will continue with them for now. The areas they have stopped working on are my pleural effusion and my skin lesions.
Anyway, for now, I will continue with my endocrine therapy as well as getting my lung drained now and then. The side effects I experience change from hour to hour. I often get asked about how I feel and it’s hard to explain exactly. Sometimes I have grinding bone pain, other times lung, liver or neck pain. Sometimes I have extreme fatigue, sometimes only subtle fatigue. Sometimes I have nausea. Sometimes I get migraines. Sometimes a few of these things happen together. Once in while I don’t have any of these side effects. I asked my oncologist if this is normal and she said it is.
Thanks for checking in! I wrote an end of year post in my Shadows section as well. You can find it here: Yay?
Much love and many thanks to all of my friends and my family.
Julie
Marisa, Meg and Julie on Christmas Day 2022
Another November Update
I’ve got a few updates as well as some new information to share. If you are new to my site, thanks for stopping by! You can find a medical synopsis here: Cancer History
As I mentioned in my previous post, I had the fluid around my lung drained a few weeks ago. Unfortunately, it came back rather quickly. As soon as insurance approves it, I will be having this procedure again. The procedure is rather uncomfortable. After some numbing shots, a tube is inserted from my back, between the last two ribs, into the lung sac. Immediately after the procedure, my right lung was sore. Sore like a sore throat, if you can imagine that. Kind of weird. Then I had two, not-so-common side effects. First, my lung and the sac began rubbing against each other which has a slight grinding sound. The rubbing causes inflammation which in turn causes pain. Second, a nerve became inflamed and sent shooting pains into my shoulder and abdomen. Both issues have lessened but not resolved. So now I’ve got the uncomfortable fluid in the lung as well as the side effects! You might wonder why I would want to get it drained again at this rate. The fluid causes a lot of pressure and it also causes my blood oxygen rate to drop, so it’s important to try to get rid of it again.
When a person has stage four cancer, their primary cancer is growing in other parts of the body. One of the places my breast cancer is growing is in my skin. The skin lesions have grown recently which indicates that my current medicines have stopped working. In the next few weeks I will be switched from endocrine therapy to something called Piqray. As the oncologist was explaining Piqray to me she mentioned that it caused diabetes. I asked how many of her patients who take it have developed diabetes to which she answered, “all of them.” Honestly I was floored. I have never heard of such of thing. I really don’t want another disease! This little tidbit of information has been quite hard for me to digest. For those of you who are against or hesitant about western cancer medicines, I’m sure you think this is crazy! I agree! However, it is the only medicine being offered to me at this point, so I’m going to give it a try. After this medicine, there is one more I can try. I’m tempted to skip the Piqray and go straight to the other one, but after thinking about it, it seems best to try both. Sometime in December I will go to a class on diabetes and then start the new medication. My doctor says I can probably manage the diabetes without insulin, so that’s good. I don’t think I’m naturally someone who will be great at checking my blood sugar on a schedule, eat on a schedule, etc., so I’ll need to figure all of that out.
I’ve also been having a lot of issues with my neck and the base of my skull where I have some cancerous bone lesions. I get pain, a “buzzing” sound, headaches, etc. I’ve found that if I don’t move my head too much it helps. So if I look kind of stiff, you’ll know why!
Having mentioned the term “western medicine” above, I think I’ll talk about my philosophy on medicine for a minute. I am using everything that western medicine has to offer me. I understand people’s concerns about some of these therapies/modalities. In fact, I share many of the concerns, but also am willing to give them a try for lack of other options. I am additionally using/have used a fair amount of natural remedies though I don’t talk about them much. I will say that people kindly offer me natural/homeopathic remedies almost daily. I research most of them and have implemented some. It’s super hard navigating all of this though for multiple reasons. I have had more than a few loved ones die soon after trying extreme natural treatment plans. (To be fair, they were very sick when they started the plans.) I have, of course, also known people who have died from cancer who did not not try any natural treatments. It’s hard to know what route to take. To complicate things even further, each natural clinic or treatment plan seems to be different from the next, making it even harder to figure out. I had some experiences as a young person that have given me pause and kept me from jumping head first into, really, anything medically speaking. Honestly, I think I can say, I don’t really, fully believe in any of it. Rather I want to trust in God and do my best with what I have. My trust is not in any one doctor or any one prescription or any one natural remedy.
I know this post is getting long, but I’ll share some of the aforementioned experiences with you anyway. :)
The first experience had to do with my mom who had a long fight with cancer which ended when she was 53 and I was 17. She fought hard. She was not okay with dying. She tried everything her doctors offered and let me tell you, in the 1980s, that was some crazy stuff. Her cancer kept coming back more aggressively. As she worsened she decided to go away for a while to a homeopathic cancer center where she was put on a strict diet, did daily coffee and wheat grass enemas, went through talk therapy and more. I don’t know where she got the money to go there, but she was a fighter and somehow she made it happen. I saw a big decline in her health after going to this place and she died soon after. Personally, I think it was too radical for the state she was in at the time. Maybe it would have been more helpful if she had gone sooner, but who knows.
The other experience wasn’t about medicine, but faith, and in a way, “treatment.” It involved a relative who was dying of cancer being told that if they had more faith they would be healed. When this beautiful woman died, I felt so sad knowing that she may have thought, as she was dying, that she didn’t have enough faith. Almost as soon as humans were created, death became imminent. It is part of life as we know it. I do not long to die. I don’t feel ready. I will use the tools given me to try to live as long as possible. However, I do also know that we will all die. I believe heaven will be a wonderful place to be and that is a comfort.
As I’ve read many cancer patients posts and blogs in the past few years, I’ve come to think we are all trying our best, in our own ways, with the tools we have available.
I feel so weird writing all these things out. I don’t want to sound like a know it all. It can be hard to let the world know my personal stuff. I don’t want to be insensitive to others. I don’t want to seem self-aggrandizing. The doubts go on and on. Then, I remind myself how helpful it is for me to read other people’s life stories and I hesitatingly push, “publish”, letting my life story go out into the world wide web with a hope and a prayer.
2 Corinthians 4:18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
October Updates
October has been a month of ups and downs! I’ve had several difficult episodes with cancer related stuff, but have also had some really great times with family and friends.
The downs…
A few weeks ago I had one of my throwing up/ head pain episodes that was probably the worst one yet. I personally think these events happen because C2 (a neck bone with cancer which was radiated) has a reaction when I use my neck a lot in one day.
This past weekend I was in the hospital for two days due to pain from the malignant pleural effusion I have. It took two days of waiting, but they were finally able to drain the fluid around my lungs. Then I had a very painful, uncommon reaction that lasted about a day. Now I feel better than I have in quite some time! It turns out that having your lungs make enough oxygen feels pretty good!
My red and white blood cell counts are fairly low, which adds to my fatigue.
The ups…
My brother turned 60 this month!!! Our whole family had a great time celebrating on a fun family trip.
In two days, Mic and I are leaving on another vacation with long time friends as well as my brother and his wife. We are staying in a really cool house in Punta Mita, Mexico. I’m really looking forward to the warm water!!! Now that I can breathe a little better, I anticipate being able to do a little bit more.
The day after we get back from Mexico I have my three month PET scan as well as an appointment with my oncologist. We are hoping the scan shows that the cancer remains stable. I’m so thankful that God has give me peace throughout this journey.
I wrote up my cancer history as some people have asked me about it. You can find it here: Cancer History
I haven’t written anything new in the Shadows section, but if you missed last month’s entry, here it is: Peace
Much love and many thanks,
Julie
John 14:27, the words of Jesus
“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”
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.
