HAKUNA MATATA

HAKUNA MATATA

What a wonderful phrase 

It means no worries

For the rest of your days. 

This is my mantra. It has to be. If not, well, I would be deep down in the holes of despair. 

I know I’ve used this photo before but I wanted to remind you how I looked when I started chemo. 

A few things that need to be talked about today are things you just have to know about when it comes to chemo.  

Let’s start with hair loss. It doesn’t just start happening with your first round. That’s because your body is saying, “what the hell are you doing to me? I’ll forgive you this time”. You start brushing your hair and a few strands come out like they normally would. 

Then comes your second round. Your body says, “hey, I thought we talked about this!!!”  You start noticing a little more hair coming out now. But you just tell yourself, phew, that’s not too bad. 

And then, after round three, dun dun dun, your body says, “buckle up buttercup, you are in for a ride.” You brush your hair and all of a sudden you have a huge softball size mound of hair in your hand!  With everything I’ve gone through in the past two years at this point, this is the first time I broke down crying. All day crying. Go through a whole box tissue crying. You have a huge scar on your body from your transplant, which you don’t cry about, but losing your hair puts you in a tailspin. 

I had my daughter-in-law come over and cut it closer to my head. Figured I wouldn’t continue crying if I was losing short pieces of it at a time.

Here are some photos of my continued journey of the loss. 

This is my brother Phillip. I posted about his trip to see me in my previous post, “C The DIFFerence A Week Makes”. I’m sure when he visited me this day at home he was taken aback by my hair loss. I myself was taken aback that he had more hair than me. 

You continue losing more hair until you are finished with treatment. Then it comes back in but not all over your head. A few here and there. It takes longer than you think to get a glorious head of hair again.  Good times. 

Let’s go on to some something you might not know. When you lose your hair, you also lose your nose hair. I know right, I had no idea. So if your nose runs, there is NO HAIR in there to stop it from streaming out of your nose. I had to start shoving tissue up my nose. 

I actually went to an appointment with my liver doctor looking like this one day. This is the day I learned the BREAKING NEWS. There is an item like this 

WHAT THE?  A nose tampon?  Why have I never heard of these before? They actually will use them for patients that get nosebleeds because their platelets are extremely low. I never had a bloody nose.  My platelets got super low, but not extreme. It isn’t uncommon to see other patients in their chairs getting platelets or blood transfusions. 

I might have to invest in some nose tampons because even a year later I get bad runny nose syndrome. I made up that it’s a syndrome, but it’s my blog so I can say what I want. 

Stay tuned next week for more interesting and amusing facts. 

 

YOU WANT HOW MUCH?????

On May 7, 2019 the cancer clinic told us that the Rituxan chemo drug that they were giving me just wasn’t doing the job. They had decided it was time to do the whole regiment of drugs. This is called R-CHOP. Look at that picture. I had hair. Also I was wrapped in those awesome warm blankets you get in the hospital. I was cold most of the time. 

I always thought that there was one bag that had the chemo in it.  Nope, R-CHOP is five (5) different drugs.  On chemo days they always weigh you and take your height. This is so the pharmacist can mix your drugs according to your height and weight. Who knew?  (well you do now since I just told you). You’re welcome. 

I had two rounds of the Rituxan before they started the six rounds of R-CHOP. In my case I was getting chemo three weeks apart.

They don’t give you the drugs all at the same time. One at a time. This way you are devoting 5 to 6 hours a day to the process. They have snacks and drinks you can have. If you’re there for longer than 4 hours they will get you a plate of food. (at least at the hospitals I spent my time in). This was not just that icky food I had during most my hospital stays before and during transplant. You got a menu. You got to choose what you wanted. They bring it right to your chair. 

Menu items included pasta, sandwiches, pizza, regular meat dishes, soups, salads, and a chicken wrap. Oh and dessert. Be still my beating heart. Of course, (don’t tell anyone I told you this, but I would order enough so that Brent could have half). My favorite was the wrap (big enough for two), cheesy potato soup (for me), a half chef salad (for Brent), a chocolate milk shake for him, and my favorite, cheesecake with caramel sauce. You pay enough for the treatment, so they can afford what we ordered. 

Speaking of being billed for services. Let’s go over the cost of being super sick. 

This was the statement of total charges from January 1, 2019, to the end of May. You read that right. $1,178,339.12. One million, one hundred seventy eight thousand, three hundred thirty nine hundred, dollars and twelve cents!! That’s how much was billed. The amount paid was only $80,402.09. All I can say is, thank God I’m on disability Medicare. The hospitals and doctors have to accept the payment given and I’m not charged for the difference. If you or a relative are on regular insurance you might be asked (or forced) to pay the difference. Living in other countries that don’t make you pay the difference sounds somewhat better right now, doesn’t it. 

Let’s talk about the chemo drugs. Here’s a list and charges for the ones I was given. This is for the all the rounds I got. Remember I had 6 rounds plus an additional two of Rituxan.  

Rituximab.   $106,032.00

Cyclophosphamide.   $9,794.40

Doxorubicin.   $2,718.90

Vincristine.   $1351.80

Prednisone.   $571.50

Neulasta.   $45,646.68

Neulasta is a shot that they give you 24 hours after chemo. It helps your white blood cells to regenerate faster. 

Sidebar:  Does it bother anyone else that when they show cancer patients on commercials they don’t look like they have cancer?  I mean, that’s just false advertising. You look a sickly color. Show it how it really is. Don’t make it look like it’s a walk in the park! 

If you add up all my charges for the year 2019, which includes all the transplant, chemo, tests, procedures, lab work, etc,  the total amount is $1,344,445.37. 

Yikes

According to my accountant Brent, the amount of charges for the years 2018 through 2020 is over $2,300,000.00

And you wonder why so many people file bankruptcy due to medical bills. 

Ummm...NO!!!!

I’m sure you’ve all seen this welcome unwelcome sight if you have been admitted to the hospital. “We must see your urine output”. Ok. Whatever floats your boat. Glad it’s your job. Not mine. 

When I got admitted to the cancer floor, I walked in the bathroom and not only see one “hat”, but two!! Ummm, what you talking about Nurse Ratched?? I see no water. You’re hiding it!! Well, guess what?  You get to POOP in one of those hats!! DAILY!! Much screaming in my brain. I do not like pooping in a hat, you can not make me you big rat. I’ve never had to do that in all my hospital admissions. Ok maybe when I had C-DIFF, but that was different. Breathing, breathing. I asked her how people felt about this fine adventure. She said the female patients accepted it, but the cry baby sissy face males didn’t. Don’t know what they’re looking for in said poop, but have fun. 

The first room I had, had a self leveling bed. Oh, my, gosh. That was heaven. Hospital beds are the most uncomfortable things ever. Ok, not as uncomfortable as those darn tables they put you on for procedures, but you know what I mean. When ever I moved on this gift from heaven it would inflate and deflate to fit my body. So so cool. 

Your room on the cancer floor are negative pressure rooms. The door to your room is always closed unless someone is coming in and out. It has a air system in them that sucks the bad particles out. Therefore when you have visitors (before covid hit), they could come in your room without masks. But if you need to be taken down to get a procedure, or just to take a walk, you have to put on a gown, gloves, a N95 mask, and socks. They don’t want you catching any bug since you are immune compromised. 

One other thing I had done on my first admission was a Bone Marrow Biopsy. They have to check to see if your bone marrow has cancer in it. If so, you might have to get a stem cell transplant. Thank goodness the shot of deadening goes into your pelvic bone, cuz that sucker hurts like living hell.

 

This is the needle they shove stick into you. 

It’s called a Jamshidi Needle. Even the name says JAM. For your info, the verb definition is to squeeze tightly into a space, shove something into position. 

I can’t imagine the pain of feeling that needle grinding into your pelvic bone to get the sample. Let’s all take a moment of silence. 

 A week after I was released from the hospital, I had a cancer clinic visit. I hate to say it, but I looked kind of like this. 

Yup, I had jaundice. (That is not me, I can’t believe we didn’t take a picture of me, what the?) Jaundice happens when your liver enzymes are not doing well. Your bilirubin lab goes high. Your bilirubin rising also causes itching. Not fun.  And you know what I learned by reading over my reports from this visit?  The yellowing of your eyes is called SCLERAL ICTERUS. Why don’t they just call it jaundice? Geez. 

Here’s another stupid thing I read. On that visit they LOWERED the dose of my anti anxiety drug. Hello!!! We must have been in “too many things happening overload” to have not questioned this. Like they thought my anxiety level would go down!!

That same afternoon I had a liver clinic visit. According to my doctor, my liver enzymes were demonstrating signs of improvement.  Plus, Joyous Rapture, I get to have lab work done twice a week. 

I’m having the time of my li-ha-ife 

No I’ve never felt this way before

Yes I swear it’s the tru-u-uth 

And I owe it all to my bad liver

 

Why Are You PICCing On Me?

Battle scar for getting the chance to live a longer life. Stretch marks scars for giving life to three beautiful children. I wear my scars with pride. 

After leaving the hospital the second time when I got C-DIFF in February 2019, I started the process of recovery. I had to go get lab work done every week. I was doing ok, but then my Alk Phos started rising. Alk Phos is a liver enzyme. On April 5th a MRI was done. Then a liver biopsy was done. The normal range for this lab is 40-120. Towards the end of March, it started rising. On April 12th it was around 1500. 

I had a visit with my doctor on that day. We went over the MRI and biopsy report. At this time he diagnosed me with EBV-PTLD, Posttransplant Lymphoproliferative Disorder. EBV is the Epstein-Barr Virus (Mono). My male donor was positive for this. I was negative. So I developed it from him. 

SIDEBAR

One thing you might not know is when you get on the transplant list, they will talk to you about whether you want to wait for a good organ, or if you will sign a paper saying you will take an organ that has some kind of virus, like HEP-C, EBV and CMV. They will transplant these organs because they have medications to treat the symptoms. If you want that “good” organ, you can be on the waiting list for a lot longer. We did sign the paper. They are supposed to tell you before you go into surgery that the donor has some of those viruses and do you still want to take it. You have to sign a informed consent.  

Then my liver doctor broke the great (NOT) news that I had Non-Hodgkin Lymphoma. NOOOO!  Of course I immediately started crying. Why is all this freaking stuff happening to me. He said that on the MRI they saw a lesion (or tumor, they both mean the same thing) on the right quadrant of my liver. It was 1.9 cm or 3/4 in. 

What is the difference between Hodgkin and Non-Hodgkin Lymphoma?

• Non-Hodgkin lymphoma is more common than Hodgkin lymphoma.
• The majority of non-Hodgkin patients are over the age of 55 when first diagnosed, whereas the median age for diagnosis of Hodgkin lymphoma is 39.
• Non-Hodgkin lymphoma may arise in lymph nodes anywhere in the body, whereas Hodgkin lymphoma typically begins in the upper body, such as the neck, chest or armpits.
• Hodgkin lymphoma is often diagnosed at an early stage and is therefore considered one of the most treatable cancers. Non-Hodgkin lymphoma is typically not diagnosed until it has reached a more advanced stage.

At this time he took me off of my immunosuppression drugs.  We were told that most patients that have chemo after a transplant don’t need them because chemo kills all the cells in the blood that know you have a foreign agent in your body.  He also told us that a percentage of transplant patients will get this. Well aren’t I just the lucky one! 

He said that the Cancer Clinic would be calling me and sent me home. We were home for about a hour when they called and asked if I could go up there right now. Ok. That was fast. I packed my bag and we headed there. I was admitted. It is a crazy feeling to be told you have cancer and get admitted the same day. Your head is spinning. 

The next morning we met with the Oncologist. She came in with a bunch of paperwork because the liver doctor told her that Brent researches everything. (he once told Brent that he asks more questions than medical students, and a lot better questions at that). Well, Brent cares about me and will look for all answers to his questions. 

She said they were going to start me on Rituxan, one of the chemo drugs. She was hoping that this one drug would work by itself, but I would have a PET scan done after two doses to see how it was looking. Before I would get the drug, I was sent to get a PICC line put in. 

A PICC line is a thin, soft, long catheter that is inserted into a vein in your arm, leg or neck. The catheter is positioned in a large vein that carries blood into the heart. This is done with the help of an ultrasound. The Tech started with my right arm. She kept looking at the ultrasound. Apparently I have weird veins. The catheter would get to a place where there shouldn’t be a valve opening.  Oh no. What have we here. A valve that is opening and closing. It would block off and crimp the line. (A small percentage thing). She pulls it out and moves to my left arm. Yes another poke. Errrr. The left vein doesn’t have that problem. She gets it to my heart and then waits for the machine to say everything is working the way it should. She then stitches the piece you see in the first picture that is under the clear piece. The stitch’s (2) holds it in place on your arm so it doesn’t move. 

At least with a PICC line you don’t have to get poked every time. Even your labs are drawn from them. Phew. They have to be cleaned around the injection site every week so it’s lots of trips to the hospital. 

I was released from the cancer floor three days later. But there was a lot that went on during those three days. 

What were they?  You’ll have to wait till the next chapter. Hehe