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.
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.
