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.
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!!!
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.”
