Bedtime Routine

I like to have dinner around 5:30pm so we can be done cleaning the kitchen by 6:30. Then I shower my girls and make them get ready for bed. When they are all ready it is time to go give grandma a kiss goodnight. After that we all go into there bedroom together and I may nurse my toddler while I read us either out of the Bible or a Bible story for maybe 10 to 15 minutes or more. It depends on how tired I am.

Then we pray and ask the Lord for protection and involvement in our daily lives. They are usually in bed by 8:00. My middle daughter doesn't fall asleep so easy. I try to help her any way I can. She usually ends up sneaking into our bed when we are asleep.

My toddler still wakes up in the middle of the night to nurse. She usually ends up staying next to me too. So what if we have a family bed? :) In the morning I read a scripture verse. I have a stack of verses I keep in an old tea box on the kitchen table.

I pray with my daughter Karla before I have to go walk with her and wait at the bus stop with her. We pray that she will be protected from bad influences. That she will learn only what God wants for her to learn. That she will be kind but strong enough to stand up for Jesus when need be.

Back at home I would usually do the morning chores which I should do a little better at involving my other two little girls with me. I take care of my mother in law too. I try to sneak in a break whenever I can to get on the computer. Unfortunately I don't finish all my chores I should have finished by the end of the day. The End

Have a good night.

Official Diagnosis

The information in BLUE  in this post is technical information I copied and pasted from the internet

The diagnosis is official…it is

NON-HODGKIN’S DIFFUSE LARGE B-CELL LYMPHOMA

I don’t know too terribly much about it and when I do a Google search I don’t learn too much more…basically it is an aggressive type of lymphoma that is treatable…can’t say it is curable of course…they seem to think it will respond well to chemotherapy and is potentially curable…

I will be admitted to the hospital tomorrow (Wednesday) morning and will be there through the weekend probably being released Monday…to monitor fluids and make sure I am tolerating the chemotherapy well…it can cause kidney failure…so they want to monitor me closely…

The kind of chemo regimen I will be on is called CHOP

CHOP is one of the most common chemotherapy regimens for treating Non-Hodgkin's lymphoma. Regimen Drugs.

The following are the drugs used in the regimen. Select a drug to see a page and pertinent information.

• Cyclophosphamide (brand names cytoxan, neosar)
• Adriamycin (doxorubicin / hydroxydoxorubicin)
• Vincristine (Oncovin)
• Prednisone (sometimes called Deltasone or Orasone)

Side Effects:

These drugs can cause nausea, vomiting, and loss of appetite. There are medications your doctor can prescribe such as Zofran or Kytril that may lessen chemotherapy induced nausea.

Fatigue is common during chemotherapy treatment. Proper rest and pacing oneself may be helpful.

Treatments can be delayed if the patient has a low white blood cell count (neutropenia). Blood counts can be raised by drugs such as Granulocyte Colony-Stimulating Factor (G-CSF, brand name Neupogen ®) - a drug used to stimulate the production of granulocytes in the bone marrow.

The drugs will make your hair tend to fall out (alopecia) - you might consider headcoverings.

The doctor said that I hair loss will be complete in about three weeks…and that it would grow back about three months after completing the chemo…I will be getting 8 rounds of chemo…one day every three weeks I will be in the hospital for 6 hours getting my treatment…we will see how my work schedule fits into this once we see how my body tolerates the chemo treatments…apparently everyone reacts differently so we can’t know how I will do just yet…

After the official diagnosis bright and early this morning…my aunts and mom and I went to breakfast at Denny’s then back home for an hour before going back to the hospital for another four hours to get a PICC line put into my arm…I needed a PICC line because I have tiny veins…

A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body the extremities. And typically the upper arm is the area of choice.

A PICC line provides the best of both worlds concerning venous access. Similar to a standard IV, it is inserted in the arm, and usually in the upper arm under the benefits of ultrasound visualization. Also, PICCs differ from peripheral IV access but similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access. In addition, PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

Using ultrasound technology to visualize a deep, large vessel in the upper arm, the PICC catheter is inserted by a specially trained and certified PICC nurse specialist. Post insertion at the bedside, a chest x-ray is obtained to confirm ideal placement. The entire procedure is done in the patient’s room decreasing discomfort, transportation, and loss of nursing care.

Eventually, I will have a port in my upper chest surgically put in so that I don’t have these PICC tubes sticking out of me…

After getting the PICC line mom and I went and got our hair cut…I got a drastic cut, it is cute, it is me…I’d been growing it out just to save money on haircuts but after today’s diagnosis I needed it to feel more like ME…Then we got a couple of new PJ bottoms, tee shirts, and socks cause I need to feel comfortable and good if I am going to be in the hospital…now we are HOME and I am getting ready to pack for my first EVER hospital stay…

I have nothing to say about how I am doing emotionally, I’m taking it well I guess…I will have my computer at the hospital and I know I will cherish whatever communication I can from YOU my friends and family…I am sure there will be more frequent blog posts…

Until tomorrow

It Sucked Literally & Figuratively

Today was blood work, radiation, and the bone marrow biopsy…I was terrified this morning…The radiation techs noticed I was really quiet and out of it and I said that I would not be o.k. until this biopsy was OVER…below is a (yet another googled) picture of the procedure…The reason for this test is to see how far the lymphoma has spread, it helps in diagnosing the type…

He numbed both sides of my lower back/butt area…it was two big ‘bee stings’…after waiting for the area to numb he started the actual extraction of the bone marrow…after gently tapping and wiggling the needle into my bone…he described what I would feel as a ‘lighting bolt of pain’ when he sucked the marrow out…he said it would only be two or three seconds and that anyone can handle that because it has to be done…and he was right…it was a lightening bolt of pain and in the end, it was bearable…
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After the figurative and literal sucking I got really hot…I mean I started sweating, it felt like the temperature went up 150 degrees in the room, and then I threw-up…and felt SO much better after…the Dr. said that getting really hot was normal and the nurse said I probably threw up because I was nervous…The nurse was great and fanned me for like 10 min while he finished taking some core samples and getting the needle out of my bone…The entire time I just focused on trying to relax and have even-breathing…
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They said I did great and the Dr. prefers how I did above patients that scream and cry…I prefer to get really quite and go to a little place in my head…
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Afterward I had to lay in the office for 30 minutes to monitor where they stuck me and then I was able to go home…it has now been 7 hours and I am still not in any discomfort or pain so I am pleasantly surprised by that…
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Tomorrow morning bright and early we will be seeing the oncologist to get the results of my neck biopsies from last week and that is when we should be getting the for sure diagnosis of cancer…they have been saying it is cancer and they are treating it like cancer and I am starting chemotherapy like it is cancer so I am expecting to hear it is cancer…I will be VERY angry if they did this bone marrow biopsy today and it wasn’t cancer…I have no reason to think it will be anything but cancer…it fits…
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My mom will of course be at the oncologist appointment with me as will my two aunts Linda and Salome…They are coming up from Evansville at 7:00 their time to be there to hear anything mom and I might miss…
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Sorry if this was a little too descriptive, I am using this blog I guess as a way to both inform those who care about what is going on as well as a way for me to remember and chronicle what is has happened…
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One of my on-line friends, Robyn suggested I reward myself with a Dr. Pepper following my procedure…I did…and it was GOOD!
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Church yesterday was really good and I plan on writing a bit about that in a separate post…possibly tonight, we shall see…

Ways to NOT spend money

Even before this whole week of medical surprises…I had to start thinking of ways to not just ‘save’ money but simply to ‘not spend’ money (because my hours at work had been cut)…
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So far…

#1. Don’t get my nails done…it has been over a month (so sad I know)

#2. Don’t even entertain the idea of getting a real pedicure…my Pedegg, lotion, and thick socks are my best friends

#3. Do NOT stop at a thrift store or yard sale…you don’t stop you won’t buy anything even if it is $1.00

#4. Don’t get my haircut anymore…long is the new spiky short

#5. Take the back way to work so that I’m not tempted to stop for some ice cream or a Mellow Yellow from McDonald’s

#6. Mom has been making our laundry detergent for over a year and that has been working really well

#7. Shop at CVS and Walgreens for body wash, shampoo, deodorant, and toothpaste when they have extra bucks/register reward sales that you can couple with coupons

#8. No more soda…or at least WAY less…I drank the last Dr. Pepper in the house last night so just water from now on…the Dr’s told me I need LOTS and LOTS and LOTS of water now…I never really liked water but the last couple of weeks I have been craving nothing but water so that is good :)

#9. Cut WAY down on my hobby (I started cutting back a couple of weeks ago, and it hasn’t been too hard) I am on a sight called Swap-Bot where you swap crafts and things with people all over the world…it has been a great experience but shipping to other countries can be expensive and if you swap a lot of things the postage can add up VERY quickly without you realizing it…so I am cutting back (I will not cut it out of my life because it is a great thing) and only mailing things like postcards and flat things, like cards, paper crafts, pen pal letters ect…
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Well, that is all I got right now…there isn’t too terribly much to cut out…I have no credit cards…and just regular payments of my car, phone, car insurance, and household expenses…but I am sure I will find other ways…
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A couple of years ago I had some friends over for breakfast and somehow we were talking about money and one of them said that she and her husband have one rule…and that rule is that ‘we don’t buy anything ever’, we laughed but I have never forgotten that…I think that is a good rule…or at least one to strive for…wish me luck!
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Last night mom and I went through all my bills and we paid everything we could in advance with what we have, in all, it was pretty encouraging to get what we could paid, or at least make payments on before I will be losing my income for a little while…I am feeling blessed and encouraged by what we paid and am going to try and continue that attitude moving forward.
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Today I woke up feeling really weak…I’m not sure if it is because I slept in and so was late in taking my medication or if it is just how things might be for a while. If I am walking and have to cough forget it…it is like I can’t stand up…so my only goals for today are to do laundry and clean out my clothes in my closet…lastly I hope to take the dog for a little walk today…she has been sorely neglected this week poor thing!
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Thank you to all those who are encouraging me through this time, it still doesn’t feel real…I will not say I’m O.K because I am not…I am really scared… and next week proves to be just as busy or MORE busy than last week. Monday on top of other appointments, I will be having a bone marrow biopsy and I am terrified of having to lay face down on a table to let the Dr. poke needles into my bones…*Deep Breath*

I am feeling,

a little bit like this guy…

This afternoon was my second appointment with the oncologist (Dr. M). The pathologist report was not done so there is no actual diagnosis. The Dr. said they are pretty sure it is a lymphoma and that he spoke to the person reading my labs and that they will be for sure done by my appointment with him Tuesday afternoon…

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I will be starting chemotherapy next week (I don’t know which day)…Dr. M said that he may admit me to the hospital for a day or two when chemotherapy is started so that he can make sure I have enough fluids…

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The CT Scan of my abdomen and pelvis showed some enlarged lymph nodes in my stomach but nothing going farther down (so there is some good news)…

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According to the scales in both the radiation department and the oncologists office I have lost 4lbs since Monday…I don’t know if I was weighed at a different time of day or what…I have had less of an appetite and have been drinking A LOT less soda…for some reason that rapid loss in weight really scares me…to date I have lost a little over 15lb…

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I will not be going to work next week.

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Yesterday I between radiation and my CT Scan, I had a meeting with a women from Claim Aid…she is a representative that works at the hospital and helps people apply for Medicaid and state assistance…things went well, we will not know for a couple of months unless I get a diagnosis that would allow us to ask for an expedited approval process…A couple of weeks ago I applied for aid from the hospital, and while I have not heard anything ‘official’ the women that was helping me with the Claim Aid said she heard the other women who does the hospital assistance program say that I was approved for assistance, we don’t know how much it is but it doesn’t matter…so approved or not from the state I am able to stop looking at all these machines I’m going in as HUGE dollar signs…what a weight lifted!

Today: I had my 4th radiation treatment and the appointment with my oncologist…I have been coughing quite a bit…but no blood though so that is great!

Friday: I get my 5th radiation treatment

Weekend: I get off to process…and I need it!

Monday: I get my 6th radiation treatment, and a bone marrow biopsy from my pelvis…along with some lab work…also I am to get a lung and heart test to get a starting level of where I am before chemo is started.

Tuesday: I get my 7th radiation treatment…and my 3rd official appointment with Dr. M that will hopefully give us some certainty in diagnosis about which lymphoma it is…I don’t think they would be starting chemo and all this other junk if they weren’t sure, but I would like to be able to say with certainty.

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I HAVE CANCER…I feel like there would be some freedom in that, does that make sense?

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I am…

A Missionary's Vision

After marriage God called me to the mission field -

A little bundle needing all my care,

A disciple in touch with my life, obedient to all he hears.

Then came some more all in a row.

Everywhere I went, six little arrows in tow.

God had to call me again to His mission field.

I answered, "To China, to Africa, to Israel, oh where?"

His voice was clear, soft and gentle. My ministry arranged -

"My child, you are to polish our arrows,

Preparing them for My call to spread my

Words of life for other nations to see."

"Lord," I cried, "Loneliness surrounds my soul,

No other woman stands with me answering your call.

The sacrifice is great."

Women give way to another's voice, pulling them away

from their home, far from the quiver."

Once more I pleaded, "May I go too, Lord, I feel the call

To share with the lost, Life giving words,

To feed the hungry a satisfying meal."

"My child," Jesus replied, "You share with your

children salvation and truth.

Feed them meals under your roof.

Discipline them, train them and then lie down in peace,

For sacrificial love have you given to make the world right.

Arise in the morning, open My book,

Teach them into My eyes they must look."

"Yes, Lord, I replied, "But should I serve you in a more

obvious way?"

"Child, my sweet child," God spoke once more.

I anointed you to do this work - the high calling of Motherhood.

To show our children the need for my love."

"Lord,", I sought out, still not fully convinced,

"Should I sew for those in thread barren clothes,

a Dorcas, a Martha?" "Sit at my feet, my child, listen to me.

Your daughter needs dresses, your sons warm shirts,

The button of your husband's coat still lies on the table. Pick up your mantle, the rod of Aaron.

Lead my women back to their home.

"Yes, Lord." Filled and content, I took my position in God's mission field.

Hungry faces graced my bedside.

Clothed in God's mantle, children at my side,

I prepared breakfast.



By Paula Muller

Could I HAVE Any More Appointments?

Finally I am awake enough to feel like writing about what has been going on the last two days. Honestly it feels like it has been a week and I can’t believe it is only Tuesday night.

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I’m thinking just a timeline/list type update will be the best.

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Monday

8:30: appointment with Dr. Breckler (my new family doctor) she was great…she asked me if they had told me anything and I said no…she said that they think it is some kind of lymphoma, that there are many types of lymphoma, and that it is very treatable. She said that she will be here for me through everything and that if I needed anything explained to just call her.

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11:15: arrived at Dr. Mandal’s office (the oncologist in this story) he was running behind so we waited a long time to see him, (I started coughing up blood again as we were waiting, it seems when I do too much, get hot, or have to talk too much is when the coughing starts and it is hard to stop sometimes) during our appointment he went and looked at my CT scan…he said that I have enlarged lymph nodes in my neck chest and upper stomach (Wednesday I have a CT scan of the abdomen and pelvis to see how far these masses have spread). He said we need to get a true diagnosis of what is going on and again mentioned it is possibly a form of lymphoma…when I asked him what else it could be he rattled off a bunch of things I have never heard of, and he said that the treatment is based on the diagnosis and that there are very different treatments for Hodgkin's verses non-Hodgkin's lymphoma, or cancer verses the other more rare things it could be. He sent me to Radiation

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Time doesn’t matter at this point: We go to radiation and see a Dr. Reed…she explains the process, that I will have a radiation treatment everyday (except weekends) for 14 days. They are starting radiation without a diagnosis because the masses on my chest are pushing on my airway resulting in all the trouble I’m having breathing. They said that in contrast to my CT scan from a little over a month ago these masses are growing and spreading rapidly.

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I have learned the hard way that radiation is a very precise process…my first treatment took over a half and hour, which doesn’t sound too long until I tell you how I had to be positioned. They have to make sure they are treating the entire mass they said because it is growing so fast they need to make sure they get it all.

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Here are some pictures I found on a google image search…

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This is pretty much what the radiation machine looks like (the one at the hospital is black)

variantrilogy src="http://lh5.ggpht.com/_-2EsA9Y_K9A/S8VICF1PvNI/AAAAAAAACb4/8DQwNayWpNQ/variantrilogy_thumb%5B2%5D.jpg?imgmax=800" width=388 height=367>

This is basically the position I had to lay except my arms were more stretched above my head and I had to hold onto this handlebar thing. Because of the masses in my neck and chest when I lay like that it feels a little like I am choking and when I get up I am very lightheaded…you also have to lay there with your gown down around your middle…I left traumatized at having to lay there topless for so long…it was the hardest part of the day and I was not O.K. after..,



4:30: Home after a LONG LONG day

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Tuesday

9:30: Finally was a good girl and went to the DMV and registered my car in Indiana…I don’t know why but I kept putting it off, now I can stop being scared of getting pulled over.

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10:00: Appointment with the surgeon Dr. Vennekotter…he had some medical emergencies with other patients and was running VERY behind so we did not get in to see him until 11:45…The morning was spent talking to some people on the phone and just relaxing in the waiting room. I have decided instead of getting frustrated about having (because I know there will be a lot of waiting) to wait I am going to take every opportunity I have to close my eyes, breathe, pray, and relax…

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Dr. Venekotter felt my neck and said that the lymph node would not have been able to be removed by Dr. Moss today because it is too big and ‘fixed’. He took about 5 core biopsy samples…using an ultrasound machine he first numbed the area, then he took the ultrasound and found the right place to take the sample…after that he made a 5/8ths cut in my neck and put the needle in…it is like a gun thing and POPs and grabs tissue…he did this about 5 or 6 times so I am expecting the area to be really sore tomorrow…It hurt a little while he was doing it really just a lot of pressure.

uro_qc src="http://lh5.ggpht.com/_-2EsA9Y_K9A/S8VIFD-ncaI/AAAAAAAACcY/28TZQ9LdyLY/uro_qc_thumb2.jpg?imgmax=800" width=394 height=394>We will know the results of these tests on Thursday...4:00 on Thursday should be ‘THE’ appointment with Dr. Mandal to find out what this is…

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12:45: I had a CT scan specifically to map out the radiation spot again…so it was another 1/2hr 45 min. of holding my hands above my head, without my shirt on, having to readjust microscopic amounts to get the scan EXACTLY where it needed to be. I hated every second of it!

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1:45 ish: Had my second radiation treatment…found out after my treatment that the images from the CT scan I JUST had were not coming up and that I would have to go back and do it again…

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2:15: Back in radiology for a 2nd try at the CT scan…this time it only took one try and 10 min…I was SO relieved because I’m not sure I could handle another 45 min…

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3:00: Home where we made some tacos, and watched some shows on DVR relaxing

The agenda for the rest of the week is…

Wednesday

CT scan of my abdomen and pelvis…and my third radiation treatment…also I will be meeting with someone from the claim aid office…

Thursday

Fourth radiation treatment and appointment with the oncologist.

Friday

Fifth radiation treatment.

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O.K. was that enough information for you? I know I’m at capacity…I’m staying awake until 1:15 because I have to drink a HUGE container of something in preparation for the CT scan tomorrow…then I am going back to bed fred!