Post 4

Happy Sunday Everyone!

Mom has had a really good week. She only had mild side effects from her first cycle of chemo.

The first couple of days were a juggling act between mild headaches, fatigue, and uneasiness. But she slept, ate, and took showers (to cool off from the internal battle going on inside her).

These last couple of days she has had to complete a five day regiment of steroids. (She hates the feeling that comes from the steroids). The steroids make it hard for her to watch TV and ride in a car (things move too fast for her). She also has a hard time concentrating when she’s reading. But she does not have to take them for another two weeks, so today she made up a song lyric set to an old Herman Hermits tune called No Milk Today.

“No steroids today, my five days gone away

The bottle stands forlorn, a symbol that we’re done” J

Empty steroid bottle YAY!

She is looking forward to next week because she only has to give blood, instead of having to receive bags of drugs or spinal chemo (intrathecal) .

Dr. Gowda consulted with some of her colleagues and has done more research on Mom’s behalf. She has decided to increase Mom’s intrathecal (spinal taps) to every two weeks instead of every three weeks. She wants to concentrate on getting rid of Mom’s chances of having any cancer coming back as brain cancer. We are supposed to get a new schedule on Monday (tomorrow).

Mom has taken up a new fashion trend this week. She has taken to wearing her swim suit around the house. She says it feels less binding than wearing anything around her middle. To her, it feels like her tummy is swollen and sensitive. The literature said that the fast replicating cells would die off just like the cancer cells. So the main three things you read about that are fast growing are bone marrow (which she can’t feel any effects yet), the stomach, and hair.  Her tummy and her hair are starting to show signs that something is changing.

Mom in her swim suit after going to the Y for a swim

We talked with the nurse earlier about what to do with her hair situation. The nurse said it was an individual thing. Some people can’t stand to part with their hair and need wigs to feel better. Some people do not want big clumps of hair falling in their soup, or down the shower drain so they shave their head right away. With Mom it has been gradual. Every time she combs her hair there just seems to be a few more tangled hairs in the comb than she had the week before. So her hair may just thin out until she is semi-bald. Then we will shave it off.

So far, all we have done is gotten a couple of hats and scarves. But no real plan on what to do with her hair yet. She thinks that her shirts and scarves should match. I think that is too ambitious for the reason that she will not feel like sewing as the weeks go on.

Scarves and hats

Yesterday we went to the YMCA to take Mom for a “wiggle in the water,” as she calls it. She does not like being cooped up. Her favorite exercise ritual is to swim with Dad in the morning before he goes to work. She has not felt up to swimming for quite a while, so it was a real treat for her. It was like releasing a captive living thing back into the wild. She got this big smile on her face, a big sigh of relief and just blissfully “wiggled” away. She had the best time floating and doing gentle exercise (which is what the pamphlets recommend). Although I am not sure her immune system will be able to handle all of the germs at the Y. We should ask the doctor tomorrow if swimming will help or harm her while her immune system is being compromised. She is just so happy in the water. J Maybe the chlorine smell will become too uncomfortable for her. She is supposed to become sensitive to “smells” also.

Dad made a new batch of bean dip today. He is splitting it up into two batches. One is very mild for Mom and me. The other half batch is going to be the usual “fire” style that Michael and Dad like. It would be great if Mom’s stomach could handle beans. As long as my parents have been married, it seems like there has been a pot of beans on the stove.

Flowers Dad got for Mom 

Mom has a new word today. “thetic,” pronounced THET-ik. It means positive, set as a guide. She’s going to use that word as a positive compass for her thoughts this week.

Thank you for all of your positive thoughts and prayers as we travel this journey together. Mom is doing really well.

Post 3

Weekend (September 22^nd and 23^rd)

Mom was instructed by her health care team not to lift and to rest. Dad made Parfait Pancakes (with yogurt and berries) one day, and I experimented and made Chicken Tortilla Soup which will last for a couple of days. To my parent’s surprise I did learn a thing or two in “Chef’s” class. We rented some movies, took some walks around Denison and along the bike path, and watched a little TV. It was nice and restful, just like we were suppose too. I also had a chance to slip away for a little while to Athens, OH to see my friend Lauren.

Monday, September 24, 2012

Mom and Dad are a little anxious for the reason that Mom’s new treatments start today.

8:00 am

Mom, Dad, and I checked into Room #4 of the chemo wing at the hospital. This is a private room because Mom has to lie down during and after intrathecal chemotherapy; otherwise she will get a really bad headache. (This treatment is to prevent brain cancer because of the location of her tumor).

“T” took blood work, checked vitals, hooked up the IV to Mom’s port.

9:00 am

Dr. Gowda started the intrathecal chemotherapy in Mom’s spine.

10:00 am

Dixie starts the pre-chemotherapy drugs, which slowly drips into the IV that goes into Mom’s port. Dixie and “T’ are constantly in and out checking on Mom making sure she is comfortable.

11:00 am 
            Mom got a message from the message therapist (she thought this was so cool)

12:00 noon

Mom starts her R-CHOP chemotherapy drugs.

5:50pm Mom's done with her chemo for today, she just has to take a walk around the oncology floor and we can go home :)

Mom’s Medications

1.     Intrathecal Chemotherapy (IN-truh-THEE-kul) is a treatment plan in which anticancer drugs are injected into the fluid-filled space between the thin layers of tissue that cover the brain and spinal cord. Because the tumor is so close to the brain the doctor is doing this treatment as a preventive measure to prevent brain cancer in the future.

2.     Chemotherapy Drugs - chemotherapy does not know the difference between the cancerous cells and the normal cells. Chemotherapy will kill all cells that are rapidly dividing. The normal cells will grow back and be healthy but in the meantime, side effects occur. The normal cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss.

R-CHOP – is an acronym for chemotherapy drugs used for common types of aggressive Non-Hodgkin Lymphomas like Diffuse Large B-Cell Lymphoma (DLBCL).

R – Rituximab (ri TUK si mab) - kills lymphoma cancer cells. Can cause infusion reaction.

C - Cyclophosphamide (sye-kloe-FAHS-fah-mide) – kills cancer cells. Causes nausea and fatigue.

H - Doxorubicin (or Adriamycin) - antitumor antibiotic. Causes hair loss, and decreased heart function.

O - Vincristine (Oncovin) – inhibits cell replication. Can cause neuropathy (nerve damage).

P – Prednisolone – an anti-inflammatory medication, also helps prevent allergic reactions.

The first three drugs of the CHOP chemotherapy regimen are usually given as injections or infusions in veins on a single day, while prednisolone is taken as pills for five days. Each cycle is repeated every 3 weeks for 6-8 cycles.

3.     Miscellaneous Drugs Given (pre-chemo drugs)

1.     Benadryl (diphenhydramine) -  used to prevent airway irritation, motion sickness, and insomnia

2.     Tylenol (acetaminophen) – used for pain and fever

3.     Zofran - prevent nausea and vomiting

4.     Compazine - control severe nausea and vomiting

5.     Decadron – steroid used for swelling, heat, redness, and pain

6.     Ativan - is used to relieve anxiety

Pictures

1. Mom and her nurse "T"

2.     Intrathecal procedure being done by Dr. Gowda (dark hair) - Mom's Oncologist

3.     Sweet Mom sleeping

4.     Picture of front door (private room #4)

5.     Dad on his Droid in a comfy chair

6. Mom and Dad

7. Mom and I

8.     Flowers sent

9.     Edible bouquet

10.  Christmas trees

11.  Mom :)

I will update you later this week to let you all know how Mom's handling the first week of Chemo.
Lots of love,
Keah

Post 2

Sunday

I headed from Flagstaff to Ohio to help Mom and Dad. Dad has been working seven days a week and extra hours in the evening to be able to take Mom to her appointments. I’m so very glad to be close to them at this time and be able to hold Mom's hand.

Monday

Mom checked into surgery at the hospital yesterday morning to have her port put in. She seems to be excited about the whole thing. Number 1 - the port is purple, which is her favorite color. Number 2 - she does not like IVs because they hurt, so having a port will allow liquids to be injected or withdrawn without discomfort. Number 3 – it sounds mysterious if you can say that you have a port implant.

I had not seen the new surgical wing at our local hospital. It is very nice. There is a lot of glass so it’s light and airy and there’s a big water wall that makes a “babbling brook” sound. They have a big screen in the lobby that tells you how far along the patient is in the surgery circuit. Similar to the arrival and departure screens at the airport. Except this one tells you if the patient is done checking in (paperwork), going to surgery, in surgery, in recovery, checking out…).

Mom’s Purple Power Port is in. It only took about 12 minutes to insert in surgery.

They super glued her 2” incision closed. So she can take a shower if she wants to. (Don’t know if I trust it). It’s black and blue, swollen and looks uncomfortable. She says it hurts now that the “happy medicine” aka anesthesia had worn off. It is not supposed to be noticeable in a couple of days. Some people live with them for years after they need them because they are so convenient. We will see….

Here are some pictures from the morning she got her port put in.

Tuesday

Dr. Gowda - Today I met Mom’s Oncologist. She is barely 5 feet tall, from India and hard to understand verbally at times. She does not hesitative to repeat herself if you do not get what she says the first time and gladly answers any questions. She seems to be very knowledgeable and very thorough. Dr. Gowda has been practicing this type of medicine for many years so that makes us feel more at ease. She is also qualified to do an extra procedure that Mom needs to have so we don’t have to go to OSU in Columbus for that.

Diagnosis and treatment plan:

Good News Today, as far as cancer goes - Mom has a treatable one. It is called Diffuse Large B-Cell Lymphoma. Apparently the tumor started at the palate (the roof of the mouth). There are only two small glitches.

Glitch Number One - is that the cancer has spread to the lymph node area around her ear, sinus, jaw and tonsil area and is starting to spread to the other side of her face. Since it is not localized in one area it is considered to be a Stage Two cancer (but still considered to be in the early stages).

Glitch Number Two - is the location. Because of the location is on her palate it could come back as brain cancer if it were to ever come back. So she will receiving an extra spinal tap procedure to go along with her chemotherapy each cycle to help prevent the cancer from ever coming back. Also because of the location they do not recommend radiation treatment since there is the possibility of weakening the bones in her jaw and face. Instead they double the length of normal treatment cycle, which will be a total of six cycles instead of three cycles. A cycle is 21 days.

All of the above information is subject to change and adjustment according to how she reacts to the mixtures of chemicals. The side effects of one drug will counter the side effects of another drug.

She will start her first treatment next Monday, September 24^th. The, soon to be, ritual will take all day. They start with blood work and vitals, then do the spinal tap which takes about an hour, and proceed into the chemo which could take 3 to 5 hours depending how she tolerates the cocktail drip being given to her. The advantage of getting the extra spinal procedure is that she gets her own room where she has to lay down since this course of action can cause really bad headaches.

Dad, mom, and I were also able to get a tour of the part of the hospital where she will be getting her chemo. It has just been newly remodeled and it was nice to see where we will be going on Monday. I met some of her nurses she will be with during her treatment...all of which were incredibly nice and have a lot of experience. The nurse that gave us the tour is named Thereasa, but we call her "T". She is wonderful and loves hugs just as much as our family does.

Thank you everyone one for all of your emails and well wishes, I have been passing them onto Mom and I know she feels all of your love.

Will keep you posted. Love Keah