(Current Updates Below Introduction)
When I received this card January 24 2020, it seemed like the perfect graphic to launch this page.
For new visitors, I am 61 and was diagnosed with stage 3/grade 3 endometrial cancer at age 59. I started this journal to chronicle the details for both family and friends and myself. I have since learned that many bloggers are also interested in the journeys’ of others.
Sometimes I write a full post about cancer, but I created this page for frequent, shorter updates. They appear most recent to oldest. Questions? Email me at: firstname.lastname@example.org
August 27, 2021
365 mornings ago, I was packing my chemo bag with a book, snacks, headphones and a whole lot of water to take to the infusion suite. I was applying a little Lidocaine numbing-cream on my port and placing saran wrap on it to prevent it from getting on my shirt. I was headed to my 6th and final chemo session. It has now officially been one year today since my treatment ended and one year of being “cancer-free.”
And I do feel good. Strong. As I referenced, my chemo doctor thought my bloodwork numbers looked so good last May that he pushed me out of the 3-month nest early and I will now give blood and follow-up with him every 6 months.
After my most recent visit in July with the surgeon’s NP, I asked again about removing the port and gleaned a bit more insight. It’s really the patient’s personal choice! Some patients want to keep it for years (sometimes out of superstition) while others request its removal months after treatment is over.
I have had my port since January, 2020. One year ago today, I needed it, of course, but now it’s just a remaining symbol for cancer. Plus, I have to return every few weeks to get it flushed. I think what I am going to do is wait for my November appointment with my chemo doctor and make sure that there aren’t any suspicious numbers, and then request that the appointment be made with the surgeon to remove it. Although hospital surgery is required to place it, it is removed in his office.
I noticed, however, that the nurse practitioner was clearly not encouraging me to make the appointment. I think the surgeon would prefer that all of his patients keep their ports for as long as possible. Let’s face it. It’s easier. We’ll see, but it’s good to know that I have control over that decision.
There is one thing I need to do. My sister was diagnosed with colon cancer last October. She had surgery, and thankfully, did not need further treatment. I had my first colonoscopy 8 years ago this October and was told that I was on the 10-year plan. Excellent. But it’s clear that I need to move that timetable up, so I spoke with my primary doctor about that 3 weeks ago.
She agreed and created a referral to get me in for a consult with a gastroenterologist. I have now been scheduled for that in mid-September. Unfortunately, because of Covid, all elective surgery is on hold right now, so who knows when I’ll have the actual procedure. So many have already been postponed, but it’s good to know that I now have a place in line.
And something else happened during that visit with my primary. She listened as I described my sister’s cancer and my desire to speed up my colonoscopy. She already knew about the Covid surgery shutdown, so she paused, probably thinking we would have to wait until the situation improved, but she was just thinking something through. “This is what we’ll do” she started.
“You always have to get a consultation with the doctor first anyway” and then she added “you’re a fighter, so let’s get that done.”
What? I thought. She dropped that word so casually, like we had spoken about it dozens of times, when in fact, we never had once. I had no idea that she considered me “a fighter” and I loved hearing it. I knew that I was a fighter, but to have others see it too? Honestly, it made my day. And nothing’s going to change heading into my second year.
May 29, 2021
It seems like I’m falling into a pattern of quarterly updates. This feels right to me as there simply isn’t weekly or bi-weekly news anymore which, of course, is the goal. On the other hand, I don’t want to stop completely until I’m a little further down the recovery road.
When I last wrote, I was actively seeking out a CT scan. I had been surprised when the answer was “no” from my nurse practitioner. Undeterred, I recently returned to my chemotherapy doctor and requested one. I was stunned when he said “no” too. This was the same doctor who was seconds away from creating an order for one last January, so I was extremely disappointed. Basically, they felt that if the guidelines don’t recommend it, and I’m not showing any symptoms, then it simply isn’t necessary.
But the appointment that day was still interesting. As previously mentioned, I did ask about whether I needed to see a new radiation oncologist given that my previous doctor had left last fall. I wasn’t sure if continuing on with one was part of my overall post treatment “care” package.
My doctor had an immediate response. He even called in his RN who assists him (a first for me) to get me scheduled with a new “rad on” (new slang for me too) when she arrived in August. Interestingly, at the end of their planning, he said and add that it was “patient requested.” I thought this was a bit odd since I wasn’t requesting it per say, I was just asking whether it was necessary.
Ultimately, a change was made in that plan by the doctor and I was called to schedule an appointment with a radiation oncologist (rad on) who currently has a practice in the same building.
So we met. Yesterday. He’s a super nice guy and a great doctor too. It was an excellent conversation. He did confirm that radiation oncologists do not continue to see the patient after treatment is over. Good to know. He mentioned that he’ll see a patient once for follow-up maybe 1-2 months post-radiation and he referenced that he had seen in my records that I had never had that follow-up with my previous doctor. She was the one whose care I was under when I had such debilitating diarrhea, which in turn, led to dehydration which (along with meds I was on) led to acute kidney failure.
And so we discussed that renal failure. He took the time to read the report from the nephrologist. It is true that my kidney numbers have rebounded to a normal level, BUT it is at the very lowest normal number on the classification range. I do wonder if I’ve lost my 100% healthy kidneys forever.
At that point, he had me “hop” on the table and he did a quick check of my abdomen and my lower back near the kidneys. He asked if I felt any pain anywhere and I said “no.”
And then we got talking about CT scans. I swear I didn’t bring it up. I had already decided that I wasn’t going to go behind my team’s back and try to hustle a scan order. They had made their collective decision crystal-clear.
Somehow I was able to bring up the fact that my diagnosis was a stage 3/grade 3 cancer. I said that I didn’t understand the scan decision because of the grade 3 (aggressive) part of it, especially since I still have my port. (This screams to me that they don’t have confidence that it won’t return either.) He asked when they said they would remove it, and I said they haven’t told me.
So, he took the time to read the original diagnosis, and then he went to the guidelines for endometrial cancer. He actually showed me the page with the guidelines and sure enough the “treatment” is to continue every 3-6 month physical exams, bloodwork and to educate the patient regarding symptoms. If there are none, scans aren’t necessary.
I told him “you know the minds of cancer patients. We don’t trust our bodies and we are afraid of recurrence and we want every test available to catch its return early” and then I added “getting scans just make us feel better” and then we actually both laughed because we recognized how that sounded. I still laugh thinking about it.
He said “We’re not going to give you a scan to make you feel better, but I will say that you have a low threshold between no scan and getting one ordered. If you reported any type of symptom, then yes, a scan would happen.”
Leaving, I was impressed with the time that he spent with me. And for the first time in months, he made me feel at peace with the scan issue. I think that from the moment of diagnosis, through all my reading and research, and things overheard, I had come to assume that follow-up CT scans were the norm for all cancer patients. It’s like I felt that this tool had been taken away from me when in fact, it never was an option given my health and test results.
Lastly, I had been seeing my chemotherapy doctor every 4 months since chemo ended, but he has just pushed it up to every 6 months. It makes me a little nervous not to have my blood checked more frequently, but like the scan, he feels it is just not necessary. And I’m slowly learning that less testing is a good thing.
March 6, 2021
It’s been a long time since I shared an update. This is mainly because treatment ended several months ago and no news is good news. The issue with my weak legs resolved itself over time as I took longer walks and became more active.
In January, I resumed Tai Chi which I enjoy. It’s a weekly class that meets outside under a pavilion. We face east looking at water and birds and magnolia trees and it offers great peace.
I continue to see both my nurse practitioner with the surgeon’s office and my medical oncologist. In a surprise development, my radiation oncologist abruptly left in the fall. I need to follow-up with my remaining team to see if I need to schedule an appointment with a new radiation oncologist as I don’t want to miss any standard post-treatment care I would have received through my previous doctor.
There is a hierarchy in a cancer care team. I am not sure whether it is because my surgeon treated me first, but he is considered the “lead.” Major decisions regarding my care should come through him.
Based on this reality, when I saw my medical oncologist (chemo doctor) in January and asked when I would be receiving my second post-treatment CT scan, he quickly counted the months and said “March” but suddenly switched gears and asked when would I be seeing the NP with the surgeon next. I laughed and replied “actually, tomorrow!”. He replied “Good. Why don’t you check with them to see when they want to schedule it.” I agreed.
The next day, I dutifully asked and her response shocked me. “According to the Board of Gynecological.. (I don’t remember the full name) CT scans are not recommended, but if your medical oncologist sees a need, he is welcome to pursue it” she told me. Boy, I wanted to remind her that I once had a grade 3 cancer, and that minimally, for the first year, I would have to assume that there would be multiple scans. But I didn’t, which I regret. I’m also mad that I didn’t think to bring up my port. I still have it. If there was such high confidence no more scans were required, why wouldn’t they have taken it out? You always think of good responses after the fact.
But I’m not done either. I fully plan on resuming the conversation with my chemo doctor as he was almost close to scheduling one! My last scan was in late September. I did have a routine mammogram and it was clean.
It was also a banner week as I received my first dose of Moderna. On Monday, March 1, our state expanded eligibility to include those under 65 who are considered “extremely vulnerable.” We would need to have a doctor’s note to confirm that status which I luckily asked for from my primary doctor in January. On the next available day the system was open, I went to the Publix.com site and actually got an appointment. I was shocked to get in as it is a bit like the Hunger Games out there. And in a moment of irony, I received an email from my local hospital system the very next day explaining that I was high risk and that I would soon receive a link to sign up for a vaccination appointment. Although it was slightly humorous, I am only appreciative that two opportunities came so quickly.
I suspect that I was inspired to write today, in part, because it is the anniversary of my horrible side effects from my third round of chemo I had last March. It was the worst of the six. A year ago, I was struggling to walk to the kitchen and I was nauseous and no food was comforting.
I think about it because I am now able to measure how far I have come; the good place in which I now find myself. Sure, I want the reassurance of a clean scan, but I know how much better I am based on my busy thinking on what to do with the garden and ideas for the blog and my energy level. Cancer is not the first thing I think about when I wake up anymore.
Of course, it crosses my mind as I look in the mirror at my hair. I love the white (!) but I’m trying to grow out the very stubborn curls I didn’t even know I had. I need to get to a stylist soon who can ease that transition. This photo was taken about a month ago.
I will follow-up about my appointments and scan drama.
January 12, 2021
I received the results of my recent CT scan and it’s clean. “No mediastinal mass nor lymphadenopathy…no suspicious mass within the adnexal regions….no adrenal masses…no hepatic masses…..” There’s more, but you see the trend.
My latest white blood cell count is better. At it’s worst, it was .63 (the normal range is 3.9-11.2.) It is currently 4.16. I’m definitely at the bottom of the normal range which is a concern for COVID, but I’m vigilant, and still don’t do much. It is frustrating to be ready to return to normal life and there is no “normal” life to return to for now.
I was given the ok to get a flu shot and be in the sun more (although the doctor looked me in the eye and said “no sunbathing” and I said “no worries.”). After that, I took a huge step forward by going to the pool this week! Of course, I was in the water for maybe 15 minutes and stayed in the shade afterwards, but it felt fantastic.
I hadn’t seen my primary doctor in eight months. I just had an appointment and she has now taken me permanently off my high blood pressure medicine and cut my Metformin in half. I feel good.
Besides my hair (or lack thereof) there is only one residual side effect. My legs feel weak, or strained when I get up in the morning. I start the coffee and immediately sit to take the pressure off of them. It does go away, so I’m not worried about it. I wonder if the reason for it is the chemo or the lack of exercise over a prolonged period of time. Prior to my diagnosis, I walked or rode a bike every other day. It was never a marathon. I went 35-40 minutes per trip, but it kept the inertia demons at bay. After the second week of most post chemo treatments, I would take short walks to stay in the game, but overall, I know I’ve lost ground. That’s okay. I walk about 30 minutes now, but it’s not every other day. I’m a work in progress.
I am now returning to the infusion suite every five weeks to get my port flushed. It really only takes a few minutes and is not a big deal. We don’t want the catheter to get blocked, or it may not work anymore.
I will continue to rotate 3 month appointments between the surgeon’s NP and the medical oncologist for the next year, then every 6 months etc. If there is something to report, I will do it. I feel a little sheepish that I’ve moved farther away from the updates because I know some readers check in, but I know they understand. I’m looking forward towards the future and to quote an old song:
“The future’s so bright, I gotta wear shades.”
This will be my last post for awhile.
It’s been a month since my last day of chemotherapy. Since then, it’s been a conscious decision to stay away from updates. First, my side effects were similar and there wasn’t too much to report. More importantly though, I simply wanted a break.
It’s been 10 months of being poked and prodded. There have been a handful of times I left my dignity at home because I had to for the sake of the treatment. I have never been through anything like what I had just been through in my entire life (including childbirth) and I needed to step away from “reporting” and step towards some privacy and processing. Some things had slipped under the current over those roughly 300 days that my brain needed to address and resolve…or work on resolving. I was moody with Dennis, but of course, he just rolled with it.
What I can report now is that my kidney function is normal again. My nephrologist even said that I don’t need to see him again! This was good news.
I do have my scheduled CT scan next week. Call me crazy, but I feel 90% good about this scan. At this point, my fear is minimal. I suspect that I will be more nervous in the future because I’ll be further away from the safety of treatment, but I will put my faith in interim blood tests and markers and staying on top of every protocol put in place to prevent recurrence. I just honestly feel good about my prognosis.
And there is one (somewhat) funny note. My hair. I did lose it again, and shaved my head after round 4, but strangely, the final two rounds didn’t stop all of it from growing. Some follicles marched on. The end result is that I have some hair growing and sticking straight up, but there are many thin/balding spots surrounding that new growth. It is still white, so I look like an 80-year-old Billy Idol. I know, I know, a photo is worth 1000 words, but I can’t bring myself to take it. Maybe if it grows thicker, I will.
For this latest update, I thought I would write during the calm before the storm. For these last three rounds (on a weaker dosage), I have typically felt pretty good for about 24 hours post chemotherapy so I thought I would write immediately after my infusion instead of waiting and reporting on my side effects. At this point, those have remained fairly consistent so I expect more of the same and I don’t want to become repetitive.
Yesterday was it! My sixth and final round of Taxotere and Carboplatin. I feel even more joy than I thought I would. After 8 months, which included a handful of twists and turns, I am done with my treatment plan. This was me after returning home yesterday.
As is life’s way, the day did throw a couple of curve balls. First, my medical oncologist didn’t like my hemoglobin number. This surprised me a bit because the range had been 9.4 to 10 for several weeks (which falls just under the 10.8-15.5 normal range). This week it was 9.6. But he wanted to take action. He said it was too high for a blood transfusion, but he could do some type of B-12 treatment. He immediately wrote a note to the nurse’s station to take blood directly from my port when I arrived upstairs so he could run a full anemia panel.
And just since I’m reporting on numbers, I was disappointed that my kidney GFC number had plummeted over 10 points in a single week. But the 45.80 number it settled at is actually the same number it had previously been for two weeks at the beginning of August. It’s almost like the 56.53 number was an anomaly. Who knows, really. But I will be meeting with my kidney specialist in three weeks so I will learn more then.
I was also surprised that my chemo doctor does not want me to have any follow-up bloodwork to ensure that I “bounce back” over the next 3 weeks post-chemo. Perhaps he knew that I’ll have lab work done for the kidney specialist along with my blood draw that day. I didn’t question it. He did order a CT scan and a follow-up visit with him in 6 weeks. Maybe he thought I had enough on my plate. I had just had a follow-up check-up with the surgeon’s office two days ago.
So, I headed upstairs for the final round. The second twist was that my port did not want to cooperate. The nurse needs to see blood return once it is opened and apparently there was none. She tried a few tricks by leaning me back in the chair, holding my left arm over my head and turning my head, but there was still nothing. It sounded like there was the possibility of a small clot preventing the return, so she put in a shot of an anti-clotting drug and we hoped it would work like Liquid Plumber. It did. After 30 minutes, she withdrew the drug (that just sat on top, and maybe the clot too?) with another needle and the result was immediate. Blood filled the tube attached to my port. I received some saline to ensure that liquid could flow freely and then we started on the pre-meds to prevent nausea and allergic reactions. The last session had begun.
As my last bag started to beep, my alert that it was officially over, I thanked my nurses for their hard work looking over me and really, everybody. I’ve watched them worked their “butts” off running from patient to patient while machines beeped, or worse, they needed immediate assistance because of an unwelcome reaction of some kind. Their days are busy.
They did explain to me that I would need to return every 4-6 weeks to receive a port flush. That will help to keep the port from clotting. I will keep my port for at least a year, maybe two, so if there is a recurrence, I’m ready to go. Unfortunately, you have to think about those things.
But not TODAY! I’m done and I feel euphoric. Ok, a little tired and euphoric. I’ll have scans and check-ups and lab work and appointments spread out over the next five years and I wouldn’t want to have it any other way. We have to stay on top of it. And we will. I am completely borrowing this idea from a Facebook response I received yesterday when I announced that it was my last round. It just feels spot-on.
I’m on day 7 after receiving my latest round of chemo. When I met with my medical oncologist (which I always do right before a treatment) he was pleased with both my white blood cell and red blood cell counts. In particular, my WBC count had popped from a paltry 1.78 (the normal range is 3.9-11.2) to 6.02 in a single weeks’ time. This meant that I would not need to have the Neulasta shot because I am able to build up my own white blood cells without “stimulating” my bone marrow. This is the shot that frequently gives patients “bone ache.”
He was also pleased with my kidney number. Although the 45.8 GFC number did not rise over two consecutive weeks, it didn’t drop either. Getting over 60 is the goal. He asked how the previous round went and I said “great.” Aside from my usual issues, I had minimal side effects from the round. He mentioned that it might be different this time because of the accumulative effect. He maintained the weaker dose.
When I went up to the suite, I looked for the two nurses who have been particularly helpful (they are all nice), but neither were there that day. I was able to get a front row seat again and received my infusion from a seasoned male oncology nurse. I learned something new from him. I explained my history of allergic reactions again and he replied as my previous nurse had done. I was most likely safe from a Taxotere reaction, however, when I return for my 6th and final round, they were going to have to keep an eye out for the Carboplatin drug.
“What? That is the one drug that hasn’t caused any issues” I said.
“Yes, but starting with rounds 6 and 7, studies have shown that toxicity builds and there is a higher risk of a reaction to this drug over time.” “Fantastic” I thought to myself. I may have uttered another word in there too.
Post-treatment, I slept a lot again. In fact, on day 3, after sleeping all night, I had breakfast and lay down feeling like I was falling into a coma. I don’t think I moved my body for 2.5 hours and my eyes had little strength or interest in opening. I probably slept, but I just lay there too.
Taste issues became more prominent this round. It had happened before, where food doesn’t taste the same, but it wasn’t widespread. This time, most everything tasted weird to bad. Sadly, even water tasted bad. This isn’t good when you are trying to drink 2 quarts a day for your kidneys. Adding ice made it a little better. Instead of individual sips, I learned to gulp it to get the volume I needed.
One.more.time. I have nothing to base it on, but I’m wondering if my doctor will return to the full dose for the last hurrah. In an odd way, even knowing what side effects could appear, I’m not entirely opposed. It feels like it’s the last opportunity to annihilate any microscopic cancer that may be holding on. Also, if we make those hideous cells finally flatline, I don’t ever have to return to treatment. That’s worth it.
Here we go again. The hair loss is right on schedule. When I sit, I can literally watch a strand or two drift down onto my shirt at any given moment. I’m either going to have Dennis shave it again today or tomorrow.
Aside from the obvious change from brown to salt n’ pepper and straight and long to tiny curls (I added a previous photo for comparison) my scalp is tender this time. It feels like it is sunburned, but that is not the case. Maybe the new drug, and how it attacked my hair follicle cells, is to blame. I have to wash my hair gingerly though because it can be pretty painful.
Unless Tropical Storm Isaias has a major affect our area today and tomorrow, my next chemo round is Thursday.
It’s been 10 days since my 4th round of chemo and I’m feeling good. Actually, I’m feeling great. I remember telling my husband Dennis that returning to chemotherapy after an unexpected 7-week break was akin to me staring out at the Atlantic. After the somewhat horrific 3rd round, I was completely lost in the enormity of going through three more treatments. I had “escaped” it for a while, and frankly, I grew to think that I could avoid it altogether. I imagined that the doctor would say “with your kidneys, and the break you’ve had, we’ve decided not to continue your chemo treatment. You’re done.” A girl can dream right?
The first update is that I did not have a reaction. Yes, it was a different drug, but Taxotere is a “cousin” to Taxol, so my guard was up. I chose a chair right in front of the nurse’s station. I also explained to my nurse my fears and she was great. She listened, she reviewed my history and she kept an eye on me. I had experienced a sudden jolt of fear when I realized that my mask would actually cover-up my beet-red face (my typical first symptom of a reaction) and if I wasn’t able to talk, no one would know. I missed having my husband there. After the scary part was over, I passed the time with a magazine, being lost in thought and eating some small snacks.
After a much shorter day in the suite, I came home, ate some chicken noodle soup and slept. I took a lot of naps the next day and the next. I anticipated some nausea, but it never materialized. I kept waiting for the debilitating weakness to kick in. Previously, I had been so weak, I could barely walk to the kitchen without leaning on the counter and being short of breath. I needed a step stool in the shower for support. This time, none of that happened. Was it the new drug? The weaker dose? The absence of the Neulasta shot? The long delay between rounds which affected the accumulative effect? I don’t know. I do know that I didn’t leave the house last time until day 11 post-treatment, and this time I was out on day 7. Honestly, I could have made it 6.
I also protected my kidneys from the Carboplatin this round by drinking as much water as humanly possible. For a while, I was hitting the bathroom five times a night, but that didn’t bother me. Being diagnosed with kidney failure again bothered me more.
Basically, I’m shocked by the ease of round 4. Even if the side effects return with a vengeance in round 5, I will know that, at that point, I only have one to go. Psychologically, I can handle that. And I’m enormously grateful. I think I’ve got this.
I am heading back to chemotherapy in two days. I wanted to give an update before it begins. I’m pretty sure that I’ll be sleeping a lot and moving slowly.
I did learn more information from the nurse practitioner. My time getting infused will be significantly less. This is because Taxotere “drips” at a much faster rate than Taxol. She explained that years of research has shown that certain drugs are most effective when they are programmed to drip either quickly or slowly. This is good news because it will cut my time by almost 3 hours. This is a psychological boost too because it will be easier to be alone (no visitors allowed) for 3.5 hours vs. approximately 6.
Unfortunately, there is still a chance for an allergic reaction. The NP remains confident that having an allergic reaction to this drug is much less likely than with the Taxol. Without my husband sitting next to me to get help though, I plan on sitting right in front of the nurses’ station so they will see my beet-red face and hear me saying “it’s happening” very quickly.
My doctor is taking additional precautions too. I had already been taking a single dose of Dexamethasone the night before and receiving an additional dose right before the chemo drug entered my system. Now I will be taking two doses of the corticosteroid the day before and after, as well as receiving it in the infusion suite too. If Dexamethasone sounds familiar, it has been in the news recently as a drug connected to COVID treatment. According to the WHO, it has shown to be effective with critically ill patients because of its “anti-inflammatory and immunosuppressant effects.” They say that it reduces the mortality rate by about one-third. I’m kind of happy to have this in my system right about now.
I also asked whether I would be receiving another dose of Neulasta. Neulasta is given about 27 hours after the chemo session ends. It is a drug that stimulates the growth of healthy white blood cells which take a hit after chemo. As positive as that sounds (white blood cells fight infections), it is the “stimulation” of that bone marrow that can give you “bone ache.” It’s not pleasant. Additionally, the delivery system for the drug is wild. After chemo is finished, a nurse attaches an “on-body injector” onto my arm. It has a green light that blinks every 6-7 seconds to show it is functioning properly. This makes the first night of sleep more sporadic because I keep seeing a green light blinking on my arm and on the wall. About 27 hours later (while I’m watching T.V. at night) it starts to buzz and whir. Then the drug starts to enter my system. The light turns red when it is done and Dennis removes it from my arm.
The nurse checked my health records and said that it had not yet been ordered. I’ll keep you posted.
And yes, I will lose my hair again. I try and remain philosophical about that. I just feel a little like Sisyphus from Greek mythology who is relegated to pushing a boulder uphill close to the top only to have it roll back down for all eternity. One step forward. Two steps back. At least it won’t be for that long.
I met with my oncologist yesterday. First, I guess I was a bit confused. I had assumed that any visits that don’t require blood work or an examination would be scheduled as a virtual visit in this COVID world. I was wrong. They have times allocated for both. Somehow, I ended up on the “in-person” appointment list. It’s not really a problem, but I always like to have Dennis with me to catch information that I may not. The protocol is currently that no “visitors” are allowed with the patient.
And this leads me to my next concern. My chemo days in the infusion suite are long. It typically takes around 6 hours for the various pre-meds and actual chemo to be infused. At this time, the suite is not allowing visitors either. I understand, but that is going to be the longest day to do it alone. Additionally, I have had two allergic reactions to Taxol. Although it has been taken off my chemo list, I worry what will happen with the substitute and that my husband won’t be there to immediately signal for help if something were to happen.
The new drug will be Taxotere. It’s the Cancer Institute’s policy to educate a patient on any chemo drug prior to the infusion. This means that I need to meet again with a nurse practitioner who will teach me about the side effects and answer any of my Taxotere questions. Of course, “what is the potential for an allergic reaction?” will be first on my list. It is scheduled for next Tuesday.
It was a good meeting with my oncologist. First, he explained that he will protect my kidneys (see May 28) by giving me lots of extra saline solution. We scheduled my first saline drip for next week. Also, he ordered blood work to check the current GFR number. Based on the number, he’ll create a distinct chemo dose for me. He already mentioned that it will be weaker. That was good news to me! The side effects from my last round were fairly rough. As in the past, I will be receiving two chemotherapy drugs for the next three rounds.
On a side note, he told me that although he would not be in on Wednesday July 8th, he wanted me to start my next round on that day anyway. I had made an educated guess that he would pick that day (mainly because most of my other rounds have been on Wednesdays) so I was ready with a counter offer. I explained that on Saturday, July 11, I would turn 60. Although I already knew that I wasn’t having a big celebration or family get-together, I just didn’t want to feel lousy on that day either. I wanted to be able to talk with family and friends, and maybe unwrap some presents. I asked if it would be alright to hold off the infusion until the following week?
He had been looking at the computer, but at that point, he looked at me. He said “I like that. The reason why I won’t be in on July 8th is that it is my 50th birthday.” We both started to laugh and wished each other happy birthday. It was actually an awesome moment. All of my doctors are so busy and it was nice to personally connect with him for a moment.
So, my kicking cancer’s ass life resumes next week with multiple appointments (including a wrap-up appointment with my internal radiologist) and chemo the following week. It was a wonderful break (about 6 weeks) and now I’m ready and stronger to start and finish this last leg.
I had my long-awaited appointment with my kidney doctor today. It’s good news. My GFR (glomerular filtration rate) number has bounced back from 17 to 42 and that was only after two weeks when they ran the tests. It’s probably higher now. Anything that is over 60 is in the normal range. I will continue to stay off the Metformin, Losartan and Triamterene. In fact, I tracked my blood pressure daily over the last month and the numbers have been good – at or lower than 120/80. There’s no reason to resume the blood pressure medication. (I attribute this to my weight loss that began almost a year ago.)
Of course, this means that the doctor is going to clear me to start up the chemo again. Talk about good news/bad news. Since this doctor is now involved in my care, he will schedule blood/urine tests after each chemo session to ensure the kidneys are staying safe. The chemo drug Carboplatin is not kidney-friendly so if he sees a number he doesn’t like, he’ll recommend stopping it.
Oh, and it’s my 32nd wedding anniversary today. We’ll celebrate with curbside pick-up, lol. COVID-19 numbers are on the rise in our state, so I remain uncomfortable eating out.
Dennis and I met for the first time with the nephrologist at 8:30 this morning. It was an interesting meeting. When my chemo doctor had first contacted him, he theorized that it might possibly be some type of ureteral obstruction that had caused my creatinine clearance levels to go from a healthy 77% to 17%. When he saw my CT scan, however, it showed that there was no obstruction. He also wondered if Carboplatin (the chemo drug I have now received 3 times) played a role. It has been known to affect the kidneys. But when he saw the medications that I am on for high blood pressure and diabetes, the diagnosis began to take shape.
I take 2000 mgs/day of Metformin to control blood sugar levels. The kidneys have to work harder to remove it from my system. I also take Losartan and Triamterene which are both diuretics (works in the kidneys to increase urine to remove extra salt and water.) So, combining the effects of Carboplatin with drugs that are not kidney-friendly along with chronic diarrhea from the radiation causing dehydration just became a cumulative burden…or so we think. The first step is to stop taking those drugs for a month and get lab work done in two weeks. I will monitor my blood pressure daily to see if there is a marked increase. We will meet with him in a month to see if my kidney function numbers have improved. He did specifically say that this is reversible which was a huge relief. I may have to stop taking the drugs permanently, or try new ones, it is hard to say.
I don’t currently know the magic number that will allow my chemo doctor to comfortably resume my treatment, but if it doesn’t get there, we’ll have to weigh the pros and cons of finishing my last three rounds. But baby steps. At least, there is a plan now to get my kidneys back on track.
The two liters of saline solution proved to be a powerful boost. I gained significant energy, the nausea dissipated and I began to eat normal meals again. I weeded a little and cleaned the house. I felt like Wonder Woman.
I was also informed yesterday that the CT scan results showed no cancer. This is excellent news and we can cross cancer off the list as the reason why my kidneys showed major distress. I will be seeing the kidney specialist tomorrow to learn more on that. I’m hoping a blood test will be taken that will show my numbers are on the rise. It’s hard to reconcile “kidney failure” with how well I am feeling.
It’s 8:13 am and I am hitting the keys. I feel a strong desire to get what I have to share down on digital paper.
My virtual meeting with my medical oncologist was yesterday. He oversees my chemotherapy. His assessment is always based on a blood test taken the previous day. If those numbers look good, I’m a go for my next round.
We said our hellos and he focused on the lab results. He started by saying that I was anemic and that I was probably feeling tired. This news didn’t surprise me since I haven’t eaten well in weeks. Side effects of radiation (diarrhea) forced me to adhere to a low-residue diet – which is not always healthy. No fruit (except bananas) no raw veggies, nuts, salads, milk, multi-grain breads etc. I had lost 11 pounds over the previous six weeks.
Then he hit us with the completely unexpected news. My creatinine clearance level (kidney function) was extremely low. He said he was going to have to send me to a kidney specialist and literally pulled out his phone and texted a colleague. The colleague immediately called him and they briefly discussed my case as we virtually sat there, watching. It was unusual, but I appreciated the swift action.
He said he wanted me to come in and get fluids “stat” both that afternoon and today. He wanted a CT scan of my abdomen immediately. We hopped in the car and one hour after that meeting began, my port was reopened and I was receiving one liter of saline solution. It took an hour.
The CT scan was not as easy. In fact, it didn’t happen. They were aware of the “stat” status, but by that time of day, it was impossible to fit in. As I had stood in line with the order, I had read it. I was dumbfounded. It said that I am in kidney failure. Kidney FAILURE?? My numbers 10 weeks ago were in the normal levels.
With no scan time available, we went home and I soon received a phone call. It was central scheduling and they found an opening on Friday. The CT scan would have to wait 48 hours.
I have an overwhelming number of questions. How soon until I can get in to see the specialist? Is this diagnosis permanent? Will this lead to dialysis? And here’s a question: What happened?
Dennis (my husband) reassured me that if I was in a life-threatening situation, they would hospitalize me. I tried to stay away from Google, but I couldn’t. I had to look up symptoms of kidney failure. I had some that were listed (weakness, fatigue) but others (swelling around ankles, confusion) not at all. There was one listed symptom, however, that concerned me. Nausea. I rarely feel it. Three rounds of chemo hadn’t make me sick. But I have had multiple moments of nausea over the last three weeks. Enough so, that I made Dennis buy me some ginger ale.
We also hold onto the possibility (however slim) that the test or printout was somehow a false negative or even a typo. We think (hope) this because it all happened so incredibly fast. I thought kidney disease took years to reach kidney failure.
Needless to say, my next round of chemo has been put on hold. The last thing my kidneys need to process are strong chemicals in my system. How this will affect my overall treatment, I do not know. I’ll keep updating as I learn more.
Yesterday was my last external radiation treatment. I walked into the treatment room and there were smiles all around.
“It’s your last day!” Carrie exclaimed as they had me lie down and cover me with the sheets.
“I feel like it’s graduation day” I responded, laughing.
“She needs a quarter roll on your side” Carrie said to Stacy who quickly adjusted my position. They have to line up the tattoos with the equipment exactly.
Suddenly, Prince’s “When Doves Cry” started on IHeart radio. As they left the room, I found myself smiling, grinning really, under my mask. “This is what it sounds like …when doves cry” I’m practically singing out loud. I had to stop my foot from moving to the beat. I had just watched the Prince tribute on television and the song was fresh in my head.
While the machine rolled around me, I lay there so incredibly grateful that this was my 25th and final time. Radiation had not been kind to me. Daily stomach and intestinal cramping, sometimes severe, left me in bed many afternoons. I hated eating, knowing that I would pay the price even though I followed the low-residue diet.
The song changed to Billy Joel’s Piano Man. I stared at a small, nondescript mark on the corner of the ceiling tile above me. I had looked at it many times wondering how many patients kept their eyes open or kept them closed during treatment and did anyone ever look at that same spot.
When Billy got to “they put bread in my jar and say “man, what are you doing here?”” The machine stopped. Through my peripheral vision, I saw the familiar sight of the therapists’ feet moving closer and it was over. I was done.
As I sat up, they handed me this wonderful “Certificate of Completion” along with their names and congratulatory notes. Not for one second did I think “I’m too old for this or that’s silly.” I LOVED that piece of paper. I EARNED that piece of paper. It proved that I had done the work and that this leg of the journey really was over. Leaving that day was the best damn feeling in the world.
I’m over a week into the new diet (see April 8 post below) to calm my intestines from the radiation and the results are so-so. God, what I would give for some almonds and a cold glass of milk (not necessarily simultaneously.) I’ve lost 4 pounds in a week. When you think you’re going to lose the food you ate prematurely, you tend to avoid eating. After fighting it for days, I finally gave up coffee too (the plan said “go easy” on coffee) and I do notice a change. There is more stabilization. Or, maybe the pros of the diet are finally kicking in. It’s hard to say. Imodium remains a staple.
So that was the backdrop to receiving some good news when I met with the radiation oncologist this week. I will have only five weeks of radiation instead of six. “Yay” I think, but the news is tempered. For this type of cancer, they typically do Radiation Phase One and Radiation Phase Two. Lucky me. Or, they are also called external and internal radiation.
Internal radiation will mean a new doctor and a drive to the main hospital 4 times. It’s about 35 minutes away. On one interesting note, I was able to teleconference with that doctor. We zoomed on Tuesday. It’s a crazy world right now, but this was one, small convenience.
Once Radiation Phase Two starts, I’ll feel like I crossed over into some sci-fi movie where radioactive material, sealed in a source no larger than a pencil dot, is positioned internally next to the targeted area and then removed after several minutes. The procedure will be repeated in three separate visits. It is called brachytherapy. As the doctor mentioned, we are fighting this cancer at a microscopic level. If it’s still there, then it’s too small to see, so they’re going to Chernobyl it; just to be on the safe side.
In the meantime, I’ve just completed round 17 of radiation. Only 8 to go.
I have now been through ten treatments of radiation. It’s been going so well that I haven’t felt the need to write an update. We get up, have breakfast, shower and head over to the medical building and wait in the parking lot for my “green light” text. This is another COVID-19 precaution to prevent anyone from waiting in the waiting room. I then walk through the main doors, get my temperature taken and walk to the radiation department. I receive my treatment (average time about 4-5 minutes) and head home. Then it’s rinse and repeat. It truly had been going well. Until three days ago.
I had been warned that the rays could scatter a bit around my intestines and they have certainly found them. There is irritation. It hasn’t helped that my typical diet includes things like Raisin Bran, almonds, multi-grain breads, crunchy peanut butter etc. During treatment, this is the exact opposite of what I should be eating if one is experiencing intestinal issues. I’ve been given a list of both foods to avoid and eat:
Armed with my new N95 mask my son sent from painting his apartment over a year ago, we went shopping for the item I consider gold right now: Imodium. I was worried whether I would find it. You never know these days what is going to be on the store shelves (I mean, who knows whether there is a correlation between the availability of Imodium and empty toilet paper shelves?) Thankfully, they were well-stocked. I also landed some bananas, applesauce, Crispex cereal (rice and corn), soup and crackers.
I only have a month remaining for radiation, so these sacrifices are temporary. It’s just important to me to share my experience, with all its variables, as it unfolds.
I have to laugh. I just came home from my first radiation treatment and realized that my March 18th post is entirely irrelevant. The machine they used on me that day is not the machine for treatment! I had been worrying about getting claustrophobic for nothing.
First, I want to mention that the large medical plaza now has a COVID-19 desk outside by the main entrance. Manned by a friendly face, the woman was asking questions such as “have you traveled recently?” etc. as people approached. She was busy when I walked up so the security guard asked me “Why are you here?” and I replied “The Cancer Institute” and he waved me through.
Ok. The machine. There is no tube. I still lay down on the same type of thin, hard surface, but this time there are three primary pieces that circulate around you. Two “arms” may periodically change position, but there are frequent stops too. I can see plenty of open space and white tiles in the ceiling at all times. They even have a radio station set to 50’s/60’s oldies which was a nice distraction.
When one of the radiation therapists announced that they were now leaving the room to begin and she didn’t mention how long it would take, I had to ask.
“Will it be 5 minutes? 2 minutes?” I am nothing if not hopeful. Either way, I needed to know in order to gear myself.
“With the initial x-rays and then the treatment, it should be about 10-15 minutes” she replied.
“You can do this” I silently repeated to myself. At that point, I didn’t know what those arms were going to do or how close they would get. I gripped my large rubber ring they gave me to hold onto with both hands and focused on “That Will Be the Day” by Buddy Holly playing somewhere behind me and the green light cut into the ceiling above me.
And then it was over. The radiation therapists reappeared, removed the tape covering my X’s (March 18th post) and using a needle, gave me three new tattoos. One on each hip and one on my abdomen. Now, I really am a badass. And I LOVE this comic strip my son sent:
So now I’ll be there every weekday for six weeks. On Mondays, I will see the doctor afterwards. I can only imagine what visit number 30 will feel like. That’ll be the day.
I had my simulation radiation appointment this week. The goal was to take a scan for my oncologist to use in mapping and measuring precisely where the moving, multiple beams will go during my daily sessions. After meeting with her first, I headed over to the Radiology department.
Two lab technicians requested that I lay down on a long, thin, hard bed after I lowered some of my clothing. They immediately placed a large warm blanket over me. One placed a comfortable brace under my lower legs and they both began to position me into the exact spot they wanted. It was literally an inch to the left, a fraction of an inch to the right etc.
Then they began to mark my hips with giant blue X’s with a paint marker. They covered the X’s with waterproof tape since the marks have to last 2 weeks. At that time, they will create a tiny tattoo at the center of each X which will be the entry angle for the machine to radiate into my pelvic region. (There was one false start. They returned to tighten the position which required moving the X’s once.)
They handed me a medium size rubber ring to hold against my chest as the machine began to move and cover the upper half of my body. My head was now deep in the tube (although if I rolled my eyes back, I could just see outside of the machine.)
The ring is used so there is a place to put your hands, but I also think it’s there so that you have something to grip and focus on as the machine whirs and spins. I’m not claustrophobic, but I’ll admit, that there was a moment where I thought it was taking too long and I got anxious. I was actually never told how long it would take; my guess is that it was 3 minutes or so. That was enough for me. I’m a little nervous to find out how long the daily treatment will be. The next step is to return in about 10 days for a trial run of the mapping. I begin really radiating after that.
There was another interesting take-away from my meeting with her unrelated to radiation. I asked her whether it was advisable for me to cancel a dental cleaning later in the week because of COVID-19. I had gone back and forth on it. There were no cases in our county and aside from the waiting room, it is a very sterile environment. And she made an interesting point. It wasn’t so much about that day or that appt., but rather if I catch it anywhere then it would delay my radiation for weeks and weeks thus diminishing the effectiveness of my entire 6-month treatment schedule. Treatments are staged and timed in a very specific way.
I’ve already been cautious, but this remark upped my personal safety protocols even further. It’s ironic that radiation treatments will take me into the hospital every single day – a potentially high risk venture. But I’ll bring my sanitizer to use after every session and trust that the hospital is using every protocol to keep us safe; especially those with compromised immune systems.
Chemo again in four days. How can that be? My energy level is finally rising, I’m sleeping well and the aches are gone.
In fact, I even had enough energy this week to sort through and make calls on various doctor, lab and treatment day bills. Some are residual from the end of last year and some are current. My favorite this week was the medical group that failed to submit “tumor analysis” in their line items to my insurance company and just decided to bill me $1000.00 directly instead. It will be reviewed. On the plus side, one medical group had requested prepayment for a service last November, but ultimately overcharged by $688.00. I just got that refunded. Thankfully, my deductible has been met, but some bills were in the pipeline before that was official so I have to figure out who pays them and/or how do I get reimbursed. Insurance is a lesson in patience, but I am grateful I have it.
The great news is that my son and his wife are flying in today for a visit. So, my four remaining “good” days will be filled with good family time and good laughs. I’ll carry that into treatment day as they leave that morning.
After my next chemo round, I go into a month-long break to have the drugs leave my system in order to prepare for radiation. I’ll start that leg of the journey at the beginning of April. I have an intriguing appointment in the middle of March where I will lay on a table, get scanned, get tiny tattoos on my hips and get microscopically measured in the pelvic region to calculate the path of the radiation pulses. More on that when it happens. I’ll receive radiation five days a week for six weeks. Then, it’s back to chemo for another nine-week cycle.
And on a completely random note, it was such a nice surprise to recently receive a lipstick sampler in the mail from a close friend. Since I always try to post a photo, here’s one where I’m wearing “Red Heels” by Guerlain. (This is not a paid advertisement.)
Win! I got out the garden tools today and successfully planted this Bougainvillea. I needed to remove the previous plant, pull some deep-rooted, scary-looking weeds surrounding it, remove the store’s wood trellis and ties, plant and then tie it to the metal trellis.
Ok. I get it. That doesn’t exactly sound like an impressive four hour project, but I was winded in 20 minutes. My last chemo treatment was 12 days ago and my reserves are still low. I wake up thinking I can do three projects then I curb it back. Everyday. It’s the nature of the beast.
But the point is, that between treatments, life goes on. We went out to dinner last night with some friends. Tomorrow I have to spend some time cleaning. I just refuse to let this horrid disease dictate what I can and can’t do. And maybe most importantly, my visible signs of productivity make me feel good and feeling good helps me heal faster. I love looking at this new plant. It’s a good day.
Last Wednesday I had my second chemo treatment. I had a much lower anxiety level going in because the first treatment day had gone relatively well; primarily due to the help of pre-medications including anti-nausea drugs and steroids (to prevent allergic reactions). They even do a 30 minute, slower “test” drip of the drug to ensure tolerance. The protocol to avoid side effects is impressive.
Having been through Round 1, I felt confident enough to invite a friend to come sit with me for an hour or so while Dennis went and got some lunch. It would be a nice break for him.
So the day moved forward, the pre-meds were done and the nurse returned with the Taxol (Paclitaxel) bag just after my friend arrived and Dennis said goodbye.
There was no need to test this time. She hung the bag and I continued to chat. In less than 5 minutes, however, my stomach felt queasy. And in an instant, I felt faint and said “I think something’s wrong. I think I’m going to pass out.” I started to see stars. Literally.
My friend jumped up to grab a nurse and suddenly there were several nurses surrounding me. Apparently, my face was beet red. I was having an allergic reaction. I was short of breath. They immediately stopped the drug and gave me an emergency steroid in my IV while a nurse was coaxing me to “take deep, slow breaths” which I could barely do.
I was much better within minutes. The incident was short-lived and is not that uncommon. Apparently, this can happen with the second dose as the body has been exposed or “sensitized” to it. It’s similar to food allergies. What they didn’t know, however (and why would they?) was that having an allergic reaction had become a phobia for me, ever since I had first heard about it. It was my primary concern before the first round. I was on uber high alert as the drug entered my system that first day. I think my fear touches on how fast you can deteriorate; how seconds count.
My cognitive side understood that the nurses are right there and would counteract the reaction immediately, but my emotional side couldn’t get over that wall of logic. I was kind of half-hanging on it, shaky and unsure.
They returned to start the treatment again. They call it “re-challenging.” I wasn’t sure I was up for re-challenging. I asked if there was any way we could return to the 30 minute “test” drip to ease into the process again. I suspect that request is unusual, but to their credit, they did agree to do it. I appreciated that so much.
What’s ahead? I still have four more treatments to go. And a wall I’m trying to get over.
I guess it’s time to tell the rest of the hair story. On the day that I took that photo of my thinning hair, it got even worse by nightfall. And still, I wasn’t sure about shaving it. I wasn’t against it per say, but I wasn’t embracing it either. I think that I had some romantic notion that it should fall out naturally; that I should respect the integrity of the process and see where it goes (besides the floor.)
But when I went to brush my teeth that night, I glanced in the mirror and was horrified. The hair was so straggly and the bald spot had grown. I thought that I looked like a 102-year-old woman.
I woke the next morning, brewed my coffee and began watching the news. Then suddenly, I stood up, went to get a pair of scissors and began to cut the remaining hair short. This was not a conscious plan. My brain had just caught up to reality that it was time.
I was in the middle of cutting when Dennis walked in.
“Oh.” He said. “Is the next step shaving? Do you want me to get my shaver out?”
I nodded yes. Suddenly, I wanted it gone. All of it.
Dennis said it was weird for him to shave my head. In fact, he did it in phases with the numbered combs they offer in the kit. First, it was an 1/8 of an inch, and then it was 1/16 of an inch.
I got in the shower and felt my head. It was prickly. Rough. Completely foreign. When I was done, I wrapped my head in a towel by habit and had to laugh. Those days are over for a while. I pulled it off and stared in the mirror. There was no going back. “So” I thought. “I could look at myself and see a victim, or I could look at myself and feel like I’m Sigourney Weaver in Alien 3.
I’m going to go with what’s behind door #2. Who doesn’t want to be a kick-ass heroine? Here are my various looks now:
My hair is on its last legs. I’ve been calling it dead hair walking since the day after chemo. The first photo below was taken Friday Jan. 31st. By Monday, Feb. 3rd, small clusters were coming out in the shower. I brushed my hair a few times in the course of that day, and enough hair came out to half-fill my bathroom wastebasket. And yet, it still looked pretty good. I am blessed with a thick head of hair.
By Weds. Feb. 5th, I was losing the battle. It came out in clumps in the shower and my comb continued to take out chunks with every comb-through. I just put my head over a wastebasket and watched the hair cascade into it. My husband Dennis walked in, stood by watching and teared up; not for the hair, but for me.
And it’s not just falling into the basket. I’ll be walking into the kitchen and feel something on my bare arms, like a spider web. I immediately brush it off, then realize it’s just hair falling out on its own and landing on me. I just removed a strand from my keyboard.
I’ve added a current photo. I still have some, but it looks drastically thinner.
I probably need to just shave it at this point, but I’m not quite ready.