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!
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
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.
