The sleeping communist cancer cells in the cervical tumor woke up earlier this year and spread to my lungs also. We discovered it when I couldn’t go to the bathroom “normally” for me. It was, in short, a mess. I have been using intermittent catheters ever since, because the communist tumor has wrapped itself around my bladder. However comma I was shortly put back into chemo therapy using the same cocktail as first time around as it had been 14 months since my last treatment back in February of 2013. Treatment commenced in April of this year.
The aforementioned cancer cell killing cocktail consisted of Paclitaxel + Carboplatin. Higher doses than last time (going for the hard punch in the nose). Unfortunately, during the second treatment in June, I exhibited pretty serious reaction to the carboplatin. According to my husband person, my entire head suddenly turned the color of a “rock lobster” and hives broke out on my arms. Good grief. Well, that was gotten under control and I went home as normal.
The third treatment in July consisted of the usual anti-nausea bag, anti-allergic bag (which puts me to sleep) and the Paclitaxel. A cat-scan was done a couple of days prior to my fourth treatment earlier this month.
Unfortunately, the level of kill was not as hoped. While the goobers on my lungs shrunk pretty darned well, the cervical tumor only had a small kill rate. I am sure that wasn’t a total surprise to the Oncologist, but it wasn’t music to my ears. That said, I should have suspected as I was still needing to cath 3 times a day, sometimes 4.
The Onc talked with us for a time and received a phone call during our visit. He had mentioned some “older drugs” he might like to try to knock this down again. Among the potential side-effects was dementia-like effect on my brain which could be permanent. Ewww. Then again, without treatment I will die sooner than later. Now after the Onc left the room to take that call, I asked my husband person, “why hasn’t he mentioned radiation?”
So when the Doc came back in I asked him, “what about radiation?” Well his face lit up and we discussed the issue and an appointment was set for this Wednesday (July 16th) with a radiologist with whom this Onc works frequently. We are leaving this appointment and outcome in the Lord’s hands.
Either way, I will be taking a ‘oral chemo’ pill and the Doc is thinking that will take care of the goobers on my lungs. Yea.
I have learned two very valuable lessons during this time. First, I am not only ‘suck in my ways,’ I don’t know how to ‘go with the flow’ and alter my thinking very well. Not a total surprise as I had no children (who are, according to parents I talk with are fabulous “go with the flow” teachers). So I need to be willing to alter my thinking as a matter of course.
The second lesson I learned was more profound for yours truly. During our meeting with the Onc, I made the following statement, ‘without the chemo therapy, even if taking the oral (not expected to really affect the main tumor), this is going to grow like crazy again and I could die next week.’ Ok, a little drastic (ok, a lot), but that was my thinking at the moment.
The Doc’s reply astonished me for a time. His said, “right now there is nothing life threatening. None of your organs are in danger at this time.” WOW !
After munging on this for some time, I came to the following realization — I have a chronic condition. Now you may be thinking, yea, so what? The so what for me is that there are hundreds of thousands of people living with chronic conditions. Many of those conditions can very well lead to early death.
The word “cancer” is just a word to describe the type of chronic condition I have and need to live with. And what has that done for me? It has rid me of the deep-seeded fear I have of the word/condition “cancer.” I am now more in control as I can approach things with objectively, having been released from the “fear” of cancer. I am better equipped to “go with the flow.”
I Are Here
And Every Day is a Holiday!!
HAPPY VALENTINE’S DAY
Every day is an opportunity to love and forgive.
Every day is an opportunity to serve others.
Every day is a holiday.
First, my appointment on the 6th of February was positive. The Onc was satisfied for the time being that my lungs were indeed “clear” of communist cancer cells. I only had a lung x-ray for this visit. He did the usual poke, prod, lung listening, etc. My next check-up is a cat scan in May. It will have been 6 months since the last one. Yea!
The visit on the 6th was different in two ways.
First, I had not taken sertraline for a little over a week. I was on the low dose anti-anxiety med and it was very helpful while I was undergoing chemo and the initial check ups after the last treatment. It just took the “edge off” and permitted me to remain focused on the tasks at hand. However comma I needed to come off of it such that I learn to cope without this med.
I experienced a small amount of withdrawal. It was only a 25 mg dose, but I am very sensitive to any med. I was a bit jittery and, as my husband person/caregiver would tell you, I was a bit aggressive at times. Shorter fuse. These symptoms appear to have subsided as of the writing of this post. Now to be candid, I have battled a temper for my entire life. And that battle will resume as “normal” — haha.
The second thing that made this visit to the Onc’s office was how I was treated by the personnel at the center I go to in this area. During the treatment phase, I was encouraged, etc. My husband person said I was a “rock star” given my ability to tolerate the treatments. I am sure it was encouraging to the staff that I completed all 6, given it was “unprecedented.”
When I visited this time, I was treated “normal.” I was basically a visitor to the office, not a “patient.” It felt weird. I wasn’t quite sure what to think for a very short time.
Then I had a “I coulda’ had a V8 moment.” I am now a visitor. Yes, I have follow-up appointments, but the folks at this center have patients with which to deal.
Wow. Changes happening and I am adjusting. The Lord is patient with me. I just hope y’all in the blogosphere can be patient as well. All my not-so-cute idiosyncrasies are going to come back out. All this said …
I are here.
Some issues regarding the last three chemo treatments were covered in previous posts. Just to recap some of the happenings.
My blood counts were being taken for a real ride during this process. I received two units of blood for very low red count and, a $10,000 shot for very low white count.
My memory faded tremendously and during these last 3 treatments it really took a holiday. Looking back, that was a good thing. I was actually fortunate.
The humor for my husband person (Mr T – teacher) and myself continued. And it had to as I would react negatively to any little potential negative that I heard or imagined. Can you just fathom what my caregiver husband person went through. Actually, some of you who read this blog can relate to what he experienced.
So treatment 6 was completed, though by white count was a little iffy. Fortunately, I had a Doctor and Nurse who allowed # 6 to happen.
At some point after the last treatment (I can’t remember how long), I had another cat scan. Then the big day approached — the outcome and potential next steps of radiation and surgery to remove the tumor (radical hysterectomy was my understanding). To say that I wasn’t nervous would be a bold-faced lie. I was taking a very low dose of sertraline so that helped with anxiety, but I was still nervous as a cat.
The Doctor came in and pronounced a good result. No further treatment necessary. To which I responded, “When do I begin radiation.” The response, Mrs Al “there is nothing left to treat.” So I thought for a moment and then asked, “What about surgery?” Response from the Doctor who was a patient with yours truly, Mrs AL “there is nothing left to treat.”
I had a bit of trouble making sense of what was being said to me and then it finally hit me … “REALLY?” The Onc told us that what I experienced was unprecedented. And he appreciated the fact that there were so many folks praying me and Mr T, praying for him, my nurse and the staff at the center where I was being treated. While we did not delve deeply in our faith, it was clear we were all Thanking and Praising the Lord for this outcome.
The subsequent cat scans (every 3 months) were also positive. In fact, the Onc indicated about 3 months ago that I was “stable” and that he was going to stretch out the cat scans to 6 months.
My function now is self-examination for nodules and other indications of a recurrence. I cannot be declared “cured” as the history of my particular case indicates recurrence at some point.
So now what?
February 6, 2013 was treatment # 6. On February 6th this year I go in for a lung x-ray and consult with the Onc Doctor person. The lungs are of concern as they too developed tumors filled with communist cancer cells. And it is my understanding that treating lung cancer is particularly difficult.
As I continue this blog I would ask a favor of each of you … if you know someone who would like to share some of their experiences as either a patient or caregiver, please encourage them to post their comments here. If interest develops, I will create a separate page for posting experiences in a comments section. Every single experience is unique. And the more we share with one another, the better.
I Are Here
And Every Day is a Holiday!!
I have discussed some issues surrounding the chemo treatments in previous posts, and will try not repeat myself here.
The Onc explained that after 3 treatments I would have a cat-scan to determine the degree to which the treatments were effective.
Just a reminder, I don’t recall a huge amount about this process so I rely on my husband person/caregiver/teacher (aka, Mr T) to make sure I am relating my experiences accurately
# 1 was a humdinger. We met the nurse I would have for the entire process, she explained the ins and outs, procedures, etc. And then we finally got to “the chair.” These recliners were in pods of 4 chairs each. So there were plenty of people with which to visit if one was so inclined. Now I must admit, this first time in “the chair” was kind of weird. The entire area was quiet as a morgue. I kid you not. Fortunately, it wasn’t like that for the subsequent 5 treatments. In fact, it was the laughter by others getting treatments, their caregivers and, nursing staff that made the whole experience delightful. But I digress …
My nurse (I will call here Melissa) was great. She was a younger lady and was quite adept at balancing objectivity with compassion. She never, repeat never gave me the “oh poor you” attitude. That was very helpful. Did she care? Absolutely she did! But she had to stay focused on the task at hand. She was handling several of us at any given time. In fact we were packed in there like sardines.
I opted to have the needle in my hand the first time. The vessels in my hands were just asking to be stuck. They were bulging and the needle went in very easily. I will say, the advantage was that when I needed to use the bathroom, it was much easier if the needle was in my hand. When it was in my arm, it was more of a pain.
My four bags consisted of anti-sick schtuff, Benadryl to fight allergic reaction, the BIGGIE bag with the really nasty chemical and, a smaller bag of chemical. (I don’t count the last bag as it was just some saline solution to wash out the line).
First bag emptied … cool beans. Second bag hung and drip started and wonder of wonders, one nurse took a look at me with my eyes swirling in my head and asked, “Are you ok?” “Absolutely,” I said. I was high as a kite. I felt no pain. Melissa commented to Mr. T at one point that I was “drunk.” They had a good laugh.
And then came the core of the humdinger experience: I suddenly felt very hot. I was feeling really bad and we called the nurse over. She took my temperature and then the game was on. Folks moving quickly, doctor called. I was having a bad reaction to the BIGGIE bag of chemical. Not good.
The process was stopped for 10 minutes. They then began the drip again at a slower rate. It was necessary that I get this schtuff if I was to survive as the communist cancer cells needed to die. A lot of folks were taking time to pray for me throughout this entire period of time. The result … the slower drip did not produce the allergic reaction. My treatments took 5 hours as a result.
And that was # 1.
Now the next two treatments did not produce the excitement of the first one.
If you have read the previous posts you know that humor was essential for me and Mr. T. It was necessary to have some fun. For example: the day the dealibob on which the bags hung was not cooperating when I had to use the bathroom.
I would take a step or two and the crazy wheels would go in three different directions. Now this isn’t cool when you have a needle stuck in your hand or arm. After about the third or fourth step I blurted out loudly to the dealibob, “HEEL! HEEL.” The nurses started laughing and even a couple of patients were amused. We all had a good laugh.
Mr T and I decided the dealibob needed to be named. After some discussion I said to Mr T, ‘The name is Camshaft.’ So from that point on, I would instruct Camshaft on how to behave when I needed to use the bathroom.
The Cat Scan Results
We were praying for a positive result, meaning that the chemicals were doing their job at a decent level. The report back to us was that there was an approximate 85% kill. The Onc told us that while not unprecedented, it was unusual and was very pleased. Evidently, I was the only lady person with cervical cancer this far advanced that had tolerated 3 treatments. The Lord showed us mercy.
My husband person and I trust that 2014 will be a peaceful and joyous year for you and yours. We must always “trust in the Lord.”
Oh, and this is also our wedding anniversary. We married on the first of January assuming we would not forget our anniversary date, and you know what? So far it has worked!
The space between posts has been fairly substantial. Why? Two reasons:
First, it is difficult to “go back” and, if you will, relive the past in this context. My MO in the past has been to dwell on the negative and live in the world of “what if.” As I write this I will tell you that this tendency and horrific habit has been changing big time.
I am learning how to recall and “go back” without allowing it to bring me down. While not everyone in a similar situation as my own is like me, there are others out there – guaranteed. So to all of you I will say, if I can do it, I believe you can also. So hang in there!
Second, I had my last appointment this year with my PCP person. I have also been falling asleep early so my sleeping pattern is disrupted. I also let him know that I seem to have a lot of energy for three, sometimes four days after I took my 1 1/2 pills (once a week, along with one pill six times a week) for sluggish thyroid function. He looked at the blood tests and said, “Well no wonder. Your TSH score is in the basement.” At which he upped the synthroid to 150 mcg from 112 mcg, So part of my lack of oomph was physical.
Now before posting what is prepared from my husband person (caregiver aka Mr T – teacher):
Our hope for each of you and yours is a most Blessed Christmas and healthy New Year.
As we Celebrate the birth of Jesus Christ may we all allow our generosity of spirit and deed to continue to flow freely.
I asked Mr T to put together a few thoughts from the caregiver perspective. So without further word from me, heeeeeere’s Mr T:
Me a caregiver. Never been placed into that role before. Sure, I was a dad and took care of the kids. Held them when they were sick or just needed held. But, giving care to a loved one gravely ill, well I never faced this before. I knew how to be taken care of, having had a few ‘incidents’ in my life. But caregiver? Was I prepared for this?
In my life I have learned a few things and tend to be contrary to the core. So when life deals me lemons, I get PIZZA. Anyone can make lemonade, but turning the world on its heels takes ingenuity and at times bigger cajoles than you knew you had.
I was taught as a puppy cop a few maxims. One was to learn my limitations and then realize I had none. Facing the unknown, thinking fast and, doing something (even if it was wrong) was a way of life. And now it was really being put to the test!
When Mrs. AL decided to fight this menace I was all in. One issue facing her was never having learned to scrap. I mean down and dirty street fight and, in a place where you cannot lose, ever. She had never faced her own mortality before and now realized it was going to happen. After all, none of us gets out of here alive. Facing death, especially your own is not a comfortable place to be. My job: teach her to fight, win at all cost and, give no quarter.
This was not the easiest job. She only saw me being strong. She did not see the tears driving to work. She wasn’t aware of the sleepless nights checking to see if she was breathing. True to her name, Mrs. AL learned fast (she had no choice), was always receptive and, took charge.
I was cautioned before the chemo started to make sure she stays active and not to lose weight. I am a master at not losing weight so that part I had locked down.
Then came one of the tests for the caregiver!
Prior to the third treatment, blood was drawn locally three days prior to treatment (it was usually done the day of the treatment). That same day, Mrs. AL was on the phone with the chemo palace and was told she might not be able to get her chemo because her white cell count was in the dumper. I could see the disappointment and despair starting. This was not going to end well.
Think, THINK, T H I N K, do something anything to change the situation. A quick check online showed me that eggs raise white cell counts. I like eggs, especially with bacon and lightly buttered toast. EGGS I call out, and she comes running. “What?” she asks. EGGS I tell her, eggs raise white cell counts (ok, so I left the part off that it takes a long time and ain’t really all that great anyway). “What are you waiting for,” she says, “GO GET EGGS!” Off I go, and boy did we eat eggs. For two and a half days, eggs with bacon and toast, too!
We go to the chemo palace and the doctor tells her white cell count is good to go and she can get the treatment. Mrs. AL leans over and hits me on the arm and says to the doctor, “he said it would work.” “What?” the doctor asked. She proceeded to tell him all about the eggs and how I said it would raise the white cells.
Doc just looks at me with a glare. All I said to him was, “hey, it worked.” The mental part was far more important that weekend than the tests or treatment. (What if it hadn’t worked? I have no idea how I would have gotten out of that one!)
Whether intentional or not we are all taught as kids to quit when the going gets tough or we don’t feel comfortable and to hang onto a mom or dad. And moms and dads don’t want to see their wee ones hurt so they reinforce the idea of looking elsewhere for help.
If we are fortunate we have experiences with people who hold us to account for our actions. If we are really blessed we learn to make PIZZA out of lemons and do something, anything even it’s wrong.
As for me, I have added eggs, bacon and, toast to that PIZZA recipe. And, I will always remember that day and how I was taught as a young cop to recognize I had no limitations, that the only thing standing in my way of anything is me. A lesson, I am proud to say, Mrs. AL learned as well.
An Unusual Thanksgiving Day Message
Given the new direction for my site, I wanted to share with you this commercial for Thanksgiving.
These children have a message for all of us. We can all learn from these young warriors.
From my husband person and myself, have a Blessed Thanksgiving Day, no matter your circumstances.
(Posted By realmegastar01)
Please enjoy this musical interlude before the next post.
Many know the potential side effects of chemotherapy. It varies widely from person to person based upon an individual’s tolerance and the type and dosage level of the treatment.
The only side effects I remember hearing about before the treatments began were hair loss (head to toe), possible nausea/diarrhea, possible neuropathy.
Well, the hair loss happened — big time! In order to maintain some kind of control of the situation, several days after my first treatment I stood in the bathroom and pulled out a sink full of hair (apx 10 minutes each day) for 2 days. At that point I was ready to go get my head shaved. My husband person bought me a wig and some scarves.
As best as I can remember the neuropathy I experienced was in both legs and feet. To this time I have periodic tingling in my left foot.
And I am most fortunate because I did not get sick and throw up or have diarrhea like some folks around me. I always did have strong innards.
Perhaps I will do another post about the side effects. Right now, I want to focus on the two side effects that were not discussed with yours truly:
CHEMO BRAIN AND CHEMO FARTS
Chemo Brain from My Perspective
The word I remember the Onc discussing was a ‘fogginess’ that may occur. “Fogginess” is a generalization and covers a whole lot of territory!
My experience with chemo brain was and is … um, well to be honest I don’t remember a whole lot about the chemotherapy. I had the ‘kitchen sink’ thrown at me, if you will. The amount I received was the highest dosage allowable. So to say I had chemo fog is a huge understatement. Literally, I don’t remember much of those weeks involving chemo.
A friend of ours (who has since died) did tell my husband person that it’s a good thing I couldn’t remember much. He had gotten quite ill. So it can be nasty.
My husband person would need to fill us in on the real effects of chemo brain. Perhaps he will do that soon.
The day after my first treatment, I had an “incident” (the only one I can remember). And here to tell you about it is my husband person and caregiver, Mr.T (teacher):
WHAT IS THAT?!
Before it hit me I began to see paint peel and the floor buckle. “What the hell is that,” I asked myself. Then it struck me like a green fog out of the night, a smell so foul that we were certainly under attack. Surely we were goners.
A quiet little voice broke the silence. “Honey, I puffered.” Can’t be I thought. Nothing that foul can come from a human being. This was our introduction to “Chemo Farts”. And a fear that we would never survive the night!
Chemo farts are a very closely guarded secret and for good reason. Nothing I can write or describe can give you an understanding of how bad chemo farts are. As a normal male I enjoy a good fart as much as the next guy. Even Ben Franklin wrote an essay on flatulence (“Fart Proudly” circa 1781, look it up its entertaining), but even he would hold his nose at this!
Fearful she was going blow up and create a hazmat issue or a superfund site in our TV room, I immediately got on the internet and searched for chemo farts.
Well, there were hundreds of hits on this phenomenon. So, I check out a chat room and learn this is a fairly common side effect of chemo drugs and that many people have a more warped sense of humor than I do. I was laughing so hard I had tears rolling down my face. Mrs. AL came into the room and I could barely read any of the postings to her.
Sampling of comments:
‘chemo brain, chemo skin, chemo belly, chemo farts….it’s all part of the prize package with chemo. If you have a dog, a brother, or a two-year old you have a good scapegoat. If not and you find yourself in mixed company and a wee little gas should escape, just lift up your shoe and say you accidentally stepped in some….well….you know….’
‘… about blew a gal’s face off at the bank. Left her cubicle to go fart in the vestibule but it stayed with me, trapped under my coat. My husband and daughter just laid their heads down and laughed and cried’
‘I was in line at the store and I felt it come on. It was so sudden I could not stop it, thankfully it was silent, but not odor free. When I realized what happened, I crinkled up my nose looked at the person behind me and nodded at the back of the person in front of me! The poor guy never knew that everyone in line behind him thought he was the culprit!’
‘… I get the walking farts crossing the room and when I fart in Wal-Mart I almost die laughing. I am not kidding these bad girls will not stay in they are coming out ready or not…I am cracking up just writing this’
That night, that very special moment in time gave us permission to laugh, and laugh we did loud and hard and at every opportunity we could.
That single fart (there were many, many more trust me) changed our perspective and attitude toward Mrs. AL’s treatment. That single fart did more than any doctor or drug could ever accomplish. It was a blessing sent to us that took us from despair to courage and a resolute attitude to kick cancers ass.
We no longer have the furniture and are replacing the flooring. As for the paint, the blistered effect looks pretty nice so we are going to leave it in place.
So next time you break one off enjoy the moment. Think of the people out there who could power a diesel locomotive on one good chemo fart. And laugh in cancers face because it doesn’t like it!