The Side Effects No One Talks About

I am going through a lot right now, with side effects. The things I am experiencing are common but no one talks about them. So, I am going to talk about them.
Spoiler alert: it may be a bit graphic!

Let’s start off with the most distressing side effect at the moment. My mouth - it is coated in a white-ish, yellow covering. There are tiny sores all over under the back, underside of my tongue. Swallowing, talking, even breathing is a chore. It is so incredibly painful. The doctor prescribed a magic mouthwash but I two pharmacies I went to couldn’t fill it. I will try again later. In the meantime they said gargle with Children’s Benadryl. It doesn’t seem to help much.

Next issue: The nether regions of my body
They tell you after your first treatment, to flush the toilet twice after using the bathroom. It is recommended, that you wipe off the toilet seat each time, because the urine is as toxic as the chemo drugs.
So I had pneumonia, which is now a upper respiratory infection. This involves a lot of coughing at the moment. If you are a mom you understand what this means. A lot of coughing = a great deal of peeing your pants. So you put a pad on and change as necessary. The only problem with this? Do you remember a few minutes ago when I told you how toxic the urine was? Now imagine that toxic urine being held up against your very sensitive lady parts for even a couple minutes. It is very painful. Red and inflamed doesn’t seem to depict how painful it is. But there is more! Before the hair on my head started falling out, all of the hair follicles hurt, stung actually. It was painful, and so it is the same in my lady parts! I have been burned, and all of the hair follicles are extremely painful. Walking normally is an exercise in tolerance! It is the type of pain that makes you sick to your stomach.

When you go poo, it is the same thing, the powerful chemicals burn as they come out....it is not very comfortable at all.

So far the hair on my legs has not fallen out. I have not shaved my legs and I really don’t care that they are hairy. I don’t have the energy to deal with it right now. Let people judge me if they want. I don’t care.
 That is all for now my mouth hurts so badly that it is hard to think!

Video of getting my head shaved

It was not easy to do, and I still have a hard time seeing myself in the mirror, but I no longer have hair. The video pretty much says it all. I am still trying to decide if I just want to go bald or wear head coverings. Head coverings seem to be hot in the summer. I will let you know.

Musings

While I believe that the food and natural route can help tremendously, I look at it like an aid to the chemo and medical path. I feel they go hand in hand. 

Medicine is a science. The doctors, they know what works, and it’s up to the patient to aid modern medicine by the foods that we put in our bodies. 

Why would you only try to beat cancer with one method? I am going to hit this cancer with everything I have in my arsenal! 

I truly feel that a big part of this fight is mental. If you feel that the cancer is going to take you down, it probably will. But if you approach it as a bump in the road and you deal with it and do what’s necessary, it will help. 

There is no accounting for your time here on earth. I feel that we all have an appointed time to go. When your time to go comes, if it’s not the cancer that gets you,it will be a car wreck,or a heart attack.....whatever. 

I may have cancer, but it does not have me. 

Wednesday, July 24 - losing my hair big time!

I had heard that your hair comes out in clumps but mine has just been a steady falling of hair.
This is my hair this morning.....

This is my hair tonight after a shower.....

It was quite traumatic to me.....I washed my hair and it just kept coming out. By the handful! I would clean it off my hands then more would come out. I thought My hair would be completely gone by the time I got done.

I was sure all of my hair was gone, but when I finally got settled down (yes I cried...a LOT), this is what I saw. I am really struggling with the hair loss.  

I first noticed that the hair follicles hurt, I mean really hurt, like thousands of little pin pricks. 

Not to be rude but  I feel all those pin pricks now in a nether region, and it is extremely uncomfortable! 

I am exhausted. I babysit for my daughter, to help her save money. I cook, I clean I take care of the 

Of the children. I am beyond exhausted. 

Today, July 23.....

This morning I woke up rolled over in bed and got my iPad to start my day. I usually take care of any messages that need answered and a few odds and ins.

But today....today was....horrible. I ran my hand through my hair and my ipad was covered, it looked as though a small hair bomb had gone off. I jumped out of bed and ran to the bathroom, my hair! It was falling out in massive amounts. My hair still looks okay to go out in public in but......I cried for the first time, I broke down and cried.

It is during times like this that it is a blessing to have friends that you can call no matter what time it is and they will be there for you. Friendships like that don’t happen often, and I am blessed to have a couple friendships such as those. 

I needed to talk to my friend Dionne, not just because it was 4:45 am here and 6:45 pm there (that helps). Dionne lives In Australia. No the reason I needed Dionne is because I knew she would cry with me, and commiserate, and then I knew she would find a way to make me feel better and give me something to laugh about.

And that is exactly what she did, we cried together, and she listened, and then we tried to find the positives. Some people have said their hair comes back curlier than ever! I have missed my super curly hair since going gray, so there is that to look forward to.

Another friend is going to have a hat shower for me. It will be akin to knowing that each friend is giving me a hug on the day I wear their hat! Fun and funky hats, what could be better! I can still go get a wig at Cancer Services, what color should I be in this life situation? Red head, blonde, black, curly, straight, blue? Purple? 

Dionne had me laughing with all the possibilities. I am so grateful for her friendship! I hope I someday get to meet Dionne in person. You see we met online, and we have never met in person. Sometimes I think Dionne is my twin sister, our lives seem to run parallel to each other, our ups and downs, our goals in life. It is uncanny sometimes.

Chemo on July 19, 2019

It went well and I don’t have the horrible headache like last time. I have also not been as tired. I hope this continues!
My tumor had shrunk .5 cm after the first round of chemo! Yay!
Oddly enough my greatest fear is not of dying from cancer, but getting an infection and having that be my demise. How horrible to think that you could have beat the cancer, but succumb to a bladder infection!

The doctor thought my hair might come out this week. I am still still struggling with that. I worry that my hair will fall out in a big clump while at a store, or out in public. I can not imagine myself bald. I think that is going to be tough. I have not cried once so far. That might be when I break down. As I write this I see two eye lashes laying on my screen.....of no!

Well I took my anti nausea medicine and it knocks me out. Keep the prayers coming, I can really use them!


Lisa Schwaberow

Schwabby

Drowning....

I have been so totally, and utterly exhausted. The sugar problems from steroids have made things worse, with glucose levels in the 4-500 range, my body is getting hit hard.
They are going to back off of the steroids which should help, but then I have a greater chance of nausea....
I also have an appointment on Monday to see my family doctor about managing the blood sugar spikes and getting meds for that.
Good news is I lost 10 pounds in one week! Well good to me the drs don’t want me to lose weight because it means something is not working properly. Well I am not going to argue about losing weight!

4 Days Post Chemo

Oh my gosh.....I feel horrible. Terrible headache, constipation and blood sugar way out of control. I feel worse today than any day previous. Some bones are aching, but not intolerable. Of course I had a very stressful day with my 5 year old grandson, and I know that stress made it worse.

I have wanted to go to bed since 7:30, I have client work to do, but just don’t have the energy, but I must find it from somewhere.

I really feel like my grandson is not dealing well with me being sick, and he is acting out. I inquired about maybe a class or something that could help explain to the kids what a loved one is going through.

Blessings from this is the psoriasis on the back of my ears and in the hairline is almost completely gone!

There is so much more I wanted to say, but it will have to wait.

Treatment 1 of Chemotherapy

Treatment 1 done! I was so nervous, I was nauseated before I had a treatment! Nerves, the horrors of the unknown, our worst enemy.

It wasn’t horrible, there were lots of nurses and staff dropping in, as well as a nutritionist. I even reconnected with a Good Shepherd church member I hadn’t seen in years!

One of the meds they pushed, it was weird, I started to say taste, it wasn’t really a taste, the the nurse said “smell”! That was it I was smelling the medicine inside my head! How in the world! It smelled like crescent roll dough! Not horrible!

The only thing I noticed right away was being fuzzy in my brain after the chemo drug. I then noticed at home that I have a terrible headache.

I also came home with this:

A nuelasta patch. It is an automatic dispenser designed to help the nausea. It will give me a shot tomorrow an then after an hour or two I will take it off. Pretty amazing if you ask me!

I also picked out a wig today. I am not thrilled with it but it will do.

Parkview Cancer Institute was once again amazing! I will create another post for this.

I am pretty tired so I am calling it a night! It has been a good day!

The Night Before....

I want to run away and tell everyone they are nuts, I can’t have cancer! What are they talking about! The fear, the stress......I don’t want to do this but what choice do I have? I can choose death, or I can choose to fight, to stay alive. I want to see both of my sons get married, I want to know their children. I need to know that my children are okay, that they are well on the path to happiness and security. Major - he is my driving force, my grandson, the reason I get out of bed every day. That little boy and I have a special connection, I can’t explain it.
Deep breath - breathe......Chemo starts in the morning. Some one wake me up from this bad dream!

A before chemotherapy for the record!

July 4th, 2019 - a day before chemotherapy begins 

Tomorrow is Chemotherapy...

Some days in your life are like D-Day, they live in infamy in your history timeline. Such will be July 5, 2019 in my life.
I had a chemo class with my care team nurse at Parkview Cancer Institute. They are amazing by the way. She began by telling me the meds I was going to be given, nothing too alarming, since I have never heard of any of them. The nurse then began to talk about side effects.

OH MY! That is when every nerve in my body went on high anxiety mode! Mouth sores, hair loss, nausea, bone pain, peeing red, diarrhea or constipation, and chemo brain (think brain fog here). Then there are the things they don’t tell you about that I learned about from a support group for my particular type of cancer. Damage to teeth, with most saying they lost all their teeth, fingernails turning brown and cracking, and toenails the same. Eye problems, cataracts, etc., the list goes on.

Most people say the treatment itself wasn’t as bad as they thought it would be. I am not worried about the treatment so much as the side effects!

The two that bother me the most is mouth sores and going bald. I often bite my tongue when I sleep and the pain is miserable! Losing my hair has benefits, Losing the hair on my legs and arm pits is a bonus! If it is permanent it’s even better! But my hair, eye brows and eye lashes?  I am really struggling with that. I make light of it to everyone, laughing, saying let’s have fun with it, but the reality is I am already crying inside!

I still can’t believe this is real (oh the pain I have is real enough and the port is real), but there is a part of me that thinks I am living in a dream, that this is all a mistake. Someone goofed up the lab reports, something, anything but cancer.

Am I going to die early? The survival rate seems really good, but has God decided my time on earth is done? Do I get a say in that? Eat healthy, exercise, postpone the inevitable and add more time of suffering? Or kick cancers butt to the curb and live to tell the story of living through a physical nightmare. Which path do I get to go down? Only God knows and I will take one moment at a time.

Today is the 4th of July, no celebrations to go to, no fireworks to set off, being all alone while the kids go to a family cookout, a family I am longer a part of. I wish my son Danny would care more about uniting all of us as a family, a cookout at his house with his fiancé Mandi and his siblings, myself, his dad and step-mom, friends. A family cookout in neutral territory. Play a whiffle ball game, frisbee, laugh, maybe a nerf gun battle! What fun! We can all have dreams. Maybe I will get a place of my own someday, and I can have everyone over.....time to fight. Fight to make dreams a reality, and fight to stay here a little linger for my grandson Majors sake. Man, I love that little boy!
More later!