Surviving Cancer

When people who have never been “close” to cancer, and by close, I mean not familiar with or close to someone who had or has it, they could never truly understand just how much cancer patients go through. People often say, “I don’t know how you do it.” Well, I know you don’t, but on that same point, do you even know, WHAT I go through, or have gone through? Other than what I have shared, or knowledge based on another’s cancer treatment, no one REALLY knows what I’ve been through and what I go through on a daily, weekly, monthly basis.

As most or all of you know, I have two young children, aged 4 and 2.5. Yes, it is a busy household, which I hear, A LOT. Although, I am not currently working, as my appointments and treatment don’t currently allow for it, I am very busy, especially as of late. If, by chance I don’t have an appointment in the morning during the week, my saint of a husband lets me sleep in. My husband works second shift. He doesn’t get home until 10:45 at night sometimes even later than that, as he frequently stays late due to staff shortage. But he lets me sleep in, because he knows how much I need that rest.

More often than not, though, recently I have had appointments 2-3 days a week. Sure, if I was going right up town to the clinic, NOT A BIG DEAL! Oh, but for my special circumstance, I get to drive to Minneapolis for each and every appointment. That means at least 2 hours of driving, on appointment days, and that is only if there is no road work, no traffic jams, and no accidents, all of which are very common, and I encounter at least one of them every time I go to appointments.

Once at the clinic in Minneapolis, which for the most part, I usually arrive on time, I check in, and then I sit and wait. Sometimes, more often than not, I wait, and I wait, and I wait. For some awful reason, they decided Mondays would be my weekly appointment day, which also happens to be the busiest day of the week at the clinic. I wait for them to call be back for labs; to have my blood drawn. Then I wait for my blood to be processed in the lab and also wait for a room to open up to meet with my doctor or physicians assistant. Once in the room, you guessed it, I wait some more. Appointments never start on time, you know how doctors are. When the doctor does finally come and go, I stay in the room, and wait some more. Lately, my blood counts have been very low, so their answer for low numbers is, getting a growth factor injection. Which, like I said, I sit and wait some more because pharmacy has to approve this injection and dosing for me. Maybe then, when all that is finished, I can leave, as long as I don’t have another appointment. All in all, this process is usually, at least, 4-5 hours of my day, gone, just like that.

When I get home, I take over caring for the kids. Sometimes one goes to school, and sometimes one goes to daycare, opposite days of course, so what I’m trying to say is, even though one of the kids might be gone, there is usually at least one of them at home for me to care for. Then, for the next 8 or so hours, I am Mom. Evenings are often difficult because my kids can be picky eaters, they instigate each other and fight like brother and sister, which makes sense, because they are, and they are often tired or overly tired by dinner time. Bed times recently are just as bad. While my kids don’t fight going to bed too much, we have created this bad habit where they want to be laid with until they fall asleep. They currently share a room, so I bring one kid in, lay with them until they fall asleep, which sometimes can take 15, 20, sometimes 30 minutes. Once sleeping, I go get the next kid and repeat the process. When the kids are finally sleeping, it’s dang near my bedtime.

Now, I don’t write all this for pity. I really just wanted to explain, a day in the life of me, a two time cancer survivor, but one who is also going through several new issues related to my cancer, at the moment.

It’s probably about time that I begin to explain what I am referring to as far as “new issues” goes, but also explain my fun, happy title for this blog post. If you have been keeping up with my blog, you already know that I have MRD (minimal residual disease) and hope to be undergoing a fairly new and promising treatment called CAR T cell Therapy. I really don’t have any updates on when exactly this will be happening. My doctor is hoping for the end of January or early February. Insurance approval is still pending, I don’t even want to know how much this treatment costs! I’m fairly certain it is not a nice number.

So this isn’t necessarily a “new” issue because I have known about it, and my doctor has know about it for several months now, but it just recently came to light, that it could be more of an issue than either of us anticipated. I will explain. I think it was September when I first noticed this hard lump forming on my chest, right next to where my port entered my body. I did still have my port at the time but it has since been removed, so I brought it up to my doctor. They didn’t think it was anything of concern but said we would schedule an ultrasound on the area just to be safe. Well that appointment comes and goes, and apparently, the orders for this ultrasound were put in the computer wrong, because the ultrasound tech ended up imaging my whole right arm, neck and shoulder area, and really didn’t even image the area in question. So a few weeks later I had another ultrasound scheduled and performed. This ultrasound tech had the location correct, and imaged the right area. The radiologist was available at the time, so he came in and interpreted what he was seeing, in person. This was interesting because he gave several answers of what my lump could be, but couldn’t for surely say it wasn’t malignant. So, by this point, we are basically into November already, and because the ultrasound images provided us with no answers, a breast MRI was ordered, which would include the area of concern on my chest. By the way, at this time, the lump had grown significantly larger and was very painful. The MRI appointment came and went. The radiologist, again, interpreted the images right on the spot, she said it did not look malignant, but more like scar tissue, or fat necrosis, yet again, not being able to give a definitive answer to the question of, “is it cancer?” I took that answer and decided to roll with it.

I really don’t remember how long it was, after the breast MRI that I finally came to my senses. I eventually thought to myself, WAIT! I have been blind-sided by cancer TWO times now. I needed to advocate for myself and then pretty much demanded a biopsy at my next appointment. The doctor was like, ok I guess if you want to… So we’re into December by this time, and I finally have a biopsy scheduled. Whether it was the actual weather or sicknesses, this appointment just kept getting cancelled and rescheduled. It was like several times, which at one point it was just cancelled and never rescheduled.

Here we are, January 13th, and it is finally done. What did it take for this biopsy to finally happen? Well, let me tell you. It took my doctor and cancer team a MRD diagnosis to finally order a PET scan of my entire body. While I am not going to go into detail about the what the PET scan actually does, I will say, that when the results came back, the lump on my chest showed up as an area of concern. Who would have thunk? So, here I am, two days after my PET scan and only one day after receiving those results, finally getting my biopsy. It seemed a little more urgent now, to my doctor.

As if the biopsy wasn’t enough today, I also was poked in the arm to have blood drawn, which is routine and not a big deal. But I also had an injection scheduled for today for a medication called Evusheld. Which is actually like Covid-19 antibodies or something and helps protect immunosuppressed patients for up to 6 months, from contracting Covid. Look it up if you would like more information, this post is already getting very lengthy, probably my longest to date. Evusheld is administered by injection. Not just one injection, but two injections. One in each butt cheek. I won’t be able to sit right for a week! I am up to three pokes during this visit, that’s enough, right? Nope! Due to my low blood counts, I get to have another injection of growth factor. This one really isn’t too bad. It’s injected either into the back of the arm or in the lower belly. I opt for the belly because, believe it or not, it is much less painful in that location. This may be due to the fact that I have had two C-sections, fat-grafting surgery, and a full hysterectomy and BSO in that area, so the skin is still partially numb and unable to feel. Four injections in one day is four too many, but I’m not done yet if you remember. Yes, I had my biopsy today, which called for numbing medication administered by, you guessed it, an injection. A lengthy injection too, one where they move the needle around to get the whole area numb. Super fun!

I am finally home and taking it easy. It was a rough morning. Not only did I get 5 needle stabs, I was also rattled by past memories that were now resurfacing pertaining to my first breast biopsy and breast cancer diagnosis. It really is like having PTSD. When I get cancer on my mind, it is never good and always a day ruiner. It becomes a hard topic to shake and often brings me to a very dark place. It wasn’t until after receiving my transplant, that I truly believe I do have PTSD, even if it is undiagnosed by a doctor.

During my transplant hospital stay the summer olympics was on. My mom and I would watch it together a lot of the days she was visiting. I now want nothing to do with watching the Winter Olympics, because all I think about is that awful hospital stay during my transplant. There are also certain foods that have become a trigger for me. I can’t do Honey Nut Cheerios anymore, or microwaveable Campbell’s tomato soup. Even browsing for jobs and thinking about starting a job has become a trigger because both of my cancer diagnosis’ came right after starting a new job. With breast cancer I had just started my. new job about two weeks prior. With my Leukemia diagnosis I had worked two half days, I hadn’t even started working my normal work schedule yet. Both jobs, I ended up terminating my employment because active cancer and cancer treatment does not really allow one to have a job. This is especially true for person’s like me who have a family with young children, among other hardships that have made this journey with cancer over the last 3 years very difficult. Difficult for anyone and everyone close to me, but especially difficult for my husband and kids. I will save the story of our hardships for a different day and a different blog.

I am going to fight this and beat it, but just know it is a very extensive and exhausting process that no amount of blogging or explanation could ever fully describe. I was poked and prodded far too many times today, and I have truly not resolved or let go of the anger I have inside of me for this journey I was given. I am so angry that this is my life. And don’t anyone for one second think that I am not thankful and beyond blessed for my children and husband and their health.

Cancer has ruined my life, it has ruined me. I am the shell of a broken, torn apart, scarred human being.