This is a bit of a disjointed post and maybe that reflects my state of mind…I don’t know…what I do know is that I will continue to be transparent…journey with me or not, know that I like living an open life and those who know me know my heart and that is safety enough for me…
Because of the extravagance of those revelations, and so I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,
My grace is enough;
it's all you need.
My strength
comes into its own
in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.
2nd Corinthians 12:7-10 (The Message)
This week has been been two bad days and two good. Monday and Tuesday were the worst…I was super nauseous and just the thought of food made my stomach churn…I couldn’t walk more than a minute before having to sit down, while making toast on Monday I couldn’t even stand there to wait for it to pop up…it was pathetic!
Sleep hasn’t been as refreshing as I though it would be #1 because I am being woken up at 5:30 a.m. every morning for the PICC-Line…and #2…in an effort to be ‘real’ I’m going to share that…apparently chemo=constipation (something I’ve never had a problem with until the last three weeks or so)…I’m taking pills twice a day, eating bran flakes every morning, and drinking some dulcolax dissolved in juice twice a day…I am not exaggerating when I say that last night I dreamt about pooping…seriously, it is outta control…all sense of privacy is apparently gone when get diagnosed with a serious illness…Dr. M has been adamant that this can become a serious problem if we don’t stay on top of it so I am doing my best to follow all directions…just as I am trying to do with all his directions…I may not be a rule follower, but I know when I have to buck up and do what I am told…
I’ve had people ask me if I have been sick a lot and I have to say, I think, I would rather have thrown up more than I did if it meant that I wouldn’t have had a constant sour stomach…we took like 7 of those blue collapsible bags from the hospital to put around the house incase I can’t get to the bathroom in time (which I gotta say that is a possibility, the urge to purge just comes outta no where sometimes) they are small (easy to hide), and so nice to have on hand…
Wednesday:
I had to be at the hospital at 7 a.m. for a PICC line dressing change, blood work, and doctors appointment. So after mom woke me up at 5:30 to flush the PICC line we wrapped it up in plastic wrap and foam tape so I could take a shower and get ready for my morning…The night before I was really worried I wouldn’t have the energy to get to the hospital on my own and was pleasantly surprised when I got out of the shower and I didn’t want to collapse…That was the start to a good day, I ran some errands after the doctors and then came home for a nap…
The doctor said that my lab work looked good, that I was doing everything right, and that the bone marrow looked good (which I am assuming to mean that there is no cancer in the blood marrow)…He said because of that I am stage 3 lymphoma…I go in weekly to get my PICC-Line dressing changed and May 14th is my next scheduled R-CHOP chemo treatment…I will go in around 7 a.m. and be there for a good 8 hrs because I will first get blood taken and see the doctor before the chemo starts…
Wednesday night I was excited to get to go to church and see everyone…mom was concerned with touching and hugging so she bought me some antibacterial hand stuff on her way home from work (such a mom thing to do), I know they said I need to be careful and that the chemo really upsets your immune system but I am not sure to what extent I need to be careful and that is a question I need to remember to ask the next time I am there…I do well enough isolating myself from the world when I am not sick so I don’t want to use this as an excuse to crawl even more into myself…
Church was great…it was not as uncomfortable as I thought it would be,…I am glad I went and will try to continue to be venerable, open, thankful, and loveable through this…I am changing as my world changes, and so far the good out weighs the bad…how crazy is that?
Thursday:
Today, I felt just a little bit better and was able to sweep the house, clean a little and finish up unpacking and organizing things from when I was gone…it feels SO GOOD…all that is left is to fold those three loads of laundry I washed…unfortunately no matter how long I look at them they do not hang and fold themselves…anyone have any tricks to get those clothes moving on their own?
God continues to be faithful in meeting our needs…needs we never even knew were coming…who would have thought about supplies for flushing the PICC-Line every 12 hours and 6 prescriptions when getting discharged from the hospital…certainly not me…I’ve never done the hospital thing before and I am blissfully naive and inexperienced when it comes to things like that…
As we try to be responsible with what God is supplying, we are able to meet our immediate and near future needs…this is of course an amazing blessing for me, but more over and calming for me, I feel it is a HUGE blessing for my mom, she has had such a great and supportive attitude through this, never mentioning my having to miss work and possibly work part time when I return…(according to how my chemo schedule works out)…her attitude my entire life has been to work hard, do what you can, and figure out the difference…she has never told me I can’t do something and has always supported as much as she can in the choices that I make…she believes in what I am capable more than I…and works harder than anyone I know…she sure doesn’t deserve to have a daughter with cancer…
Hey, did I mention, I have cancer (it is still not registering with me so, I need to bluntly say it once in a while)
Last night I was thinking about how inconsistent and unfaithful I have been in following God’s path for my life these past (almost) 29 years…then I thought about how blessed we are to serve a God is who is consistently faithful to his children…
P.S. A couple of days ago I was alerted through an e-mail of something going on, and while I am anxious to share I want to wait until I have all the information…first clue…it is pretty AMAZING!
Robin said...Hi April!
I"m so glad that you are doing well! I'm really amazed at your openness and honesty about all that you are going through. You are such a strong woman and I"m so very proud of you for facing this illness straight on. You go, girl!
I look forward to reading your blog posts every day. You are one of the bright spots in my day! I'm pulling for you and know you'll jump this hurdle in no time! I know you can do it!
Thanks so much for sharing yourself with all of us reading your blog.
Hugs!
Anonymous said...Love the blog... Glad you are feeling a little better! Mindy
April 30, 2010 at 12:13 AM 4smartmonkeys said...I'm so glad you are feeling a little better. Keep that great attitude, and know you have lots of people pullin' for ya :)
Hugs,
Rebecca
Moowee said...Chemo sucks! I had the same poop problem and my Dr told me to do whatever it took to poop. I had suppositories which are all kinds of fun. I noticed that my nausea was much better after I went. It must have been the last step for getting that nasty stuff back out of me. Maybe you will notice the same thing. Good Luck!
Finally home from the hospital…was told I was being discharged around 12:30 but didn’t get home until 4:00…
We had to go and pick up LOADS of medicine and medical supplies, after finding out the cost, I kinda freaked out…
Wednesday at 10:30 is the meeting with Medicaid, I actually do not have to go to it, the women from the claim aid office at the hospital goes, and I am not sure I will feel up to going anyway…Please keep that in your prayers because I just don’t know what the next step is if we don’t get that. They are expediting the process because of the diagnosis of cancer, so it should not take 90 days to find out…everyone seems to think I qualify, but today I am having a hard time having to wait…One great thing is that if approved the coverage goes back three months so that will be great to have the doctors re-bill through Medicaid and to redo the prescriptions…
Physically: I am exhausted…I slept from 5pm-9pm today and am off to bed again soon…I took a shower and that zapped me of ALL energy…my stomach has not been happy for over three days…I have to learn when to take the anti-nausea medicine in relation to meals...
I have been surprise by how quickly my relationship with food has changed…I simply don’t want to eat anything, EVER, just reading the menu at the hospital made me sick…I ate some toast a little over an hour ago and it did not stay…I hate not knowing how long this feeling will last after chemo, the doctor said that most times it is three days but it seems to be lasting longer for me…he also said that the first time is probably the worst so maybe that is good…
I got NO rest in the hospital they are waking you up every three hours for something, I can’t tell you how many people I met and that took care of me…unfortunately for the next two months I will have to be woken up at 5:30 every morning by mom to flush my PICC line, it has to be flushed every 12 hours and because of where it is I can’t do it myself…maybe I will learn to sleep through it…
Tomorrow my goal is to unpack…and to get my medicines in order (that will be a task in and of its self for sure)
Mentally: is a whole different post, maybe I’ll write about that tomorrow…
Michelle said...Hi. I just wanted you to know that I'm thinking of you. I'm DarbyFlats on Swap-bot. Please do something to SMILE today. Your sense of humor is wonderful and, by golly, it should stay that way!
With love, Michelle
Robin said...Just a quick note to say hi and to let you know I'm thinking about you. I know I say that often, but I do think of you all the time and am hoping and praying for the best.
I'm glad you are home. I hope you can get some rest. Things will look better once you get some strength back.
Please let me know if you need anything. I"m happy to help where I can.
Hugs!
Joni said...Hang in there April....Kankakee County is rooting for ya!!! Love reading your blogs...thanks for taking the time to update us...I know your writing is very therapeutic for you, so keep it up!! Sending many happy tbougbts your way!
Blair said...So glad that you are finally home, April! Sounds like you have a long road ahead, but I know you are brave enough and strong enough to beat it! I'm praying that you will have some good days ahead in the very near future. I'm sure it's hard right now with it being the first time, but it'll get better! I know it will!
*Big hugs!!*
nermalski said...I am glad you are home. I have heard it is rough, as my one friend said "I hid in my closet and cried on chemo days".
Well if that's what it takes. She has survived for 13 years now.
I will say that I'm keeping you in my prayers and sending you hugs. New on swapbot but there are lots of gals sending you warm fuzzies for better days ahead and looks like you've got a great group of gals if you need a shoulder or an ear.
Get your rest and take it easy.
JEss (nermalski)
Robynn's Ravings said...Oh April, I just did a dramatic exhale when I looked at all your meds and what you have to handle. Your road is NOT an easy one, my love. I'm so sorry about the nausea and exhaustion and sorry that you have to worry about your insurance on top of it all.
Keeping you in my prayers and you don't have to be funny all the time. This from a woman who uses humor as a vital part of my armor. On my non-funny days I sometimes come out and write something different or I give myself permission to go and hide. I think I speak for most of us when I say, we'll take you any way you feel.
Love to you,
Robynn
Melissa Flick said...Hey Aprilie--
So I've got a funny story...
AND it's about a BIRD!! =)
At work we have tinted windows and a little window sill that goes around them outside. We have had a variety of animals come visit us on our little sill... including chipmunks and squirrels and lately a bird... a very cute little robin (well actually he is quite a large robin) we will call Joe.
Now Joe, well we believe Joe may very well be in love--- for he not only sees himself in the windows and LOVEs what he sees but he also finds it amusing to peck at our window and THEN finds it hillarious to try to fly into the window to meet that handsome stranger in glass. It really is a sad affair, but he keeps us giggling at his tantics.
When he gets too fiesty, I do go scare him away... no sense letting him hurt himself right?
I have really no idea why I shared my little Joe story with you other than he's a bird and I know you love birds and I hope maybe for a minute or sec you smiled!
Hope you are finding some time to rest today.
Mel
Aonymous said...Hello April,
Here are some special wishes coming to you from England. Keep your pecker up, honey. it's a hard call but YOU ARE DOING SOOOO BRILLIANTLY. Just rest and set yourself reachable targets, thinking of you.
Love Kate (katiewoo)
Sue said...Hi April, I wrote to you a couple weeks ago on swap-bot through the Cheap Postage Group Wishlist thingy. I have been following your blog and just want you to know that I will pray for you and that all your medicaid goes through quickly and that you can feel relief about the medical bills, and relief from the nausea very soon! Being sleep deprived from hospital stays is very difficult mentally on top of everything else you are going through, so I hope you will get lots of peaceful sleep and let your body regenerate from the chems it has just been shocked with. You will get through this, there will be lots of different emotions for sure, but you WILL see the sunshine again!! Hugs, Sue (crescendo on swap-bot)
iluvdandelions said...Hi April! I'm glad you're home!! You're in my thoughts and prayers, sweetie.
I noticed that 'Holmes on Homes' was on tv in the hospital. He is such a hottie! Wish I could get him to work on my house - hee hee!!!
Rest well and know that you are loved! Hugs, DeAnne (Your postcard tag friend in Oregon /A Few of My Favorite Things Group on Swap-bot)
Carole said...Yay! April's home where she can finally rest!!
Thanks for taking the time to update your blog so that all of us who are rooting for you stay in the loop. I know it must sap a lot of energy to do that.
For now, rest as much as you can so that your body and the chemo meds can do their jobs.
We will keep sending you lots of hugs and healing thoughts.
CarrieZee
4smartmonkeys said...Hi ya April! I'm glad you are home. I hope you get your appetite back and can get some much needed sleep.
I'm Rebecca from swap-bot, aka 4smartmonkeys. That's how I heard what's going on, and we may not have met, but you seem like such a wonderful person. I will keep you in my thoughts. Keep smiling!
Anonymous said...Hi April,
I'm so sorry to hear of your diagnosis. I've never met you in person, but I wanted to let you know I'll be praying for you. We've been through the horribleness that is cancer (pancreatic) with my mom this past year. I don't envy you the difficulty of this journey. 2 Corinthians started to make a lot of sense to us! I wanted to pass along the title of a book we found helpful (and empowering!) -- it's Anticancer by Dr. David Servan-Schreiber, and it should be all over the book stores.
Hang in there,
Stephanie
(StephL on Swap-Bot)
Ladydy5 aka: Diane Yates said...There are a lot of friends you have here and even more on swap-bot. Reading your blog I am amazed at the humor and openness of it. You just keep the faith my dear and prayers are going up for you all the time. To see all that you are going through makes the little frets we have so small compared to the way you are handling this situation.
(disclaimer; this is a bit of a long post)
It is Friday night and I am hanging out in my hospital room watching T.V…I am getting tired, and hope to be able to sleep well tonight…I slept better last night than the first so maybe it will get easier these next three nights…The Dr. confirmed that I will be here for sure until Monday…
I didn’t get around to writing a post last night so I will start with
Thursday…
It was a LONG day, after a crappy night of sleep I was up early for breakfast and a shower…
Carla came to be with me for a few hours and got to go with me to the cancer center for the beginning of my 9hrs of chemo treatment…
They give it to you in two days the first time so that they can monitor you closely and make sure you are tolerating it well…My blood pressure was taken at least 25 times when I was there and toward the end we had to really slow the meds because my pressure was rising and I was getting really hot…
After the 9hrs in the center I came back to my room just in time to meet my mom and her friends for a little visit before they went out to dinner…Mom brought me a ham pizza from Papa Johns I’d been craving for days…it was nice to have a little visit from them…and see my mama…
Then I had a better (still not good) nights sleep…
Friday…
Today I opened up facebook and saw that my friend Danielle was wearing this green headband in honor of me today at her work…she said that they had been celebrating cancer awareness for a month and sold different colored headbands to represent the different kinds of cancer…how cool is it that lymphoma is LIME green?…SO ME! I never even thought of lymphoma having a color, I just knew pink was breast cancer…Thanks Danielle for thinking of me, it really meant a lot to me today
After breakfast, I was taken back to the cancer center for the second and more potent part of the chemotherapy treatment…I had been ready for another 9hr day and was so surprised when they said that today’s treatment was only going to be 2hrs…
Today has been the hardest for me so far, because I was getting the medicine that WILL make my hair fall out…There was no turning back and I was terrified…
The nurses are great and really helped me through my little breakdown…after calming down we went over what is going to happen as I lose my hair and then had a little party trying on wigs, scarfs, and hats…the wigs were horrible, I mean truly bad! To be fair they were not that great quality and if I went to a wig shop I am sure I might feel differently but as of today I’m thinking I am going to be a scarf and hat girl…my favorite hat so far is called the newsboy style (pictured below) (but I won’t know really until all my hair is gone) I am excited about scarves because I can make my own, and they are inexpensive, I am just scared I am not going to be able to learn how to tie them so they stay ON…
I spent the afternoon, napping and resting
My first visitors of the night were Jerry and Joyce, my friends parents (and two people I consider my family) it was nice to see them and spend a little time talking. As they were leaving Amanda and Caleb brought me some Wendy’s and the Sherlock Holmes movie that we watched together…during that time mom came and watched the movie with us…toward the end of the movie Carla and Ashley came on their way out of town to say hi and give me a great card…I’m so glad they all took time out of their Friday to come and hug and love me…
Mom brought me my mail and in it was a letter from Medicaid saying that my eligibility meeting is set for this coming Wednesday at 10:30 a.m…We are AMAZED at how quickly this happened…I JUST got the diagnosis of cancer on Tuesday and I guess since it is cancer they expedite the process but who would think it would be that Expedited! I’m not complaining but…WOW!
I continue to be a bit overwhelmed at the generosity of those in my and moms lives…Her co-workers and bosses gave us a generous gift today that will help us breathe for longer than we were expecting to be able to yesterday…this week there have been other unexpected, and wonderful ways God is literally acting out Matthew 6:26 in my life…he is saying, this is not just a verse from the bible that makes your heart feel good…This is ‘what I do’…
I may or may not be cancer free in 6 months…but no matter the outcome, who I am and how I see the world and myself is changing…changing in pretty amazing ways…
Lastly…
I would like to introduce you to a couple of little birdies in my life…
First is my new friend, a little blue bird wind chime that is hanging on my IV stand…On the way to treatment Thursday the nurses noticed another bird I had hanging on my stand and really loved it, they said that they should decorate the center more for the seasons ect…I took that opportunity to let them know the real reason I had the bird on the stand, that it was there to remind me of Matthew 6:26, and they knew exactly what verse I was talking about…about an hour into treatment, the nurse came into my room and said that she and the other nurse had gone to the gift shop and bought me this new little one for my IV stand…I was amazed, they had known me for 2 seconds, and said that I was an inspiration (I don’t understand how, but I do love my new birdie)…it was a really nice thing for them to do on a really scary day…
Second I introduce you to my yellow bellied sapsucker, it makes the real bird call (which actually sounds like the wheel of fortune wheel clicking) this was sent to me a couple of months ago from a wonderful lady on the swapping website I participate in, and has been PERFECT for holding during chemo…it is small enough to hold in one hand and the shape is perfect for mindless rubbing to soothe my nerves…
Well, I think that is enough information for now yeah?
*
Thank you for sharing in this journey with me, you have no idea what a lifeline blogging and facebook has been while here in the hospital and I am sure will continue to be the next six months to a year…I feel like the last few weeks (last few months really) have been so focused on me and am ready for the time when this will be WHAT IT IS and I can engage more in the lives of others around me…
Until Later!
Robynn's Ravings said...What a GREAT informative post, April, and especially helpful to those of us so far away from you. It did my heart good, and helped ME to see answered prayer, too.
I'm truly glad you have had sweet visitors, food you like, and a medical staff who sees you as a dear person and not just one more patient to treat. LOVE the bird they got you. :) And the one to hold is looks just perfect.
I know you'll figure out the hair thing but I'm sorry it is so hard to walk through. We're GIRLS. We like HAIR!
I'm praying for you, of course, and have shared your story with some of my praying friends. You are on my mind a lot.
Love,
Robynn
Robin said...Hey! I'm so glad to read your blog today. Things seem to be going okay, allbeit still scary. You've been on my mind so much.
Your two new birdies are lovely! I have two new birds, too. I'll tell you about them in my letter to you. I'll even try to send pics!
Hugs to you... lots of good thoughts and well wishes, too!
Amazing Grace Portraits said...Thank you April for the update. i have been thinking about you alot this weekend. My cousin who was diagnosed with Breast Cancer this week just had her last treatment Friday. I pray that God will use you in this bump in your journey.
Love ya Girlie
Liz Angell Bloom
After another long morning of tests and waiting I was finally admitted to the hospital…room number 2550…it is a really nice room, single person which is GREAT, so I thought I would take you on a little tour…
I of course had to pack pictures and things to make sure I feel at home so there is my little attempt at bringing home to the hospital
Everyone knows my love of all things bird so I wanted to show you the great pair of PJ bottoms we found at Wal-Mart last night…even birdies on my pants baby!
brought a bird to hang on my IV stand, and a bird to hang in the room, I brought a stuffed little bird to hold during chemo, and a bird figurine to sit on the nightstand…I will not forget Matthew 6:26 through these next days…I will not forget Matthew 6:26 because I will be surrounded by birds…I will be surrounded by birds given to me by people who care…and represent Christ to me…I will see Christ when I see the birds…and I will be free…
Tomorrow I start chemo…at 8:30 for 6hrs I will be getting the first drug of the regimen…they are introducing them separately this first time to monitor how I tolerate things…so then on Friday it will be another 6hrs of two other drugs…I am scared of how my body is going to react…am I going to throw up? am I going to get chills? am I going to get really weak? I guess I gotta do it to find out right?
Here is my new sassy hair cut…I love it, I do not love my irregular potato shaped face (but unfortunately there is nothing I can do about that right now)
Well, this post is kinda flat but my ambien is kicking in and I am ready to try to get ready for bed…wish me luck in getting a good sleep, I need it!
Until Tomorrow
Blair from Swap-Bot said...Thank you for sharing the pictures of your hospital room! It definitely looks like you have "prettied" it up. I didn't know that was even possible for a hospital room! :P Sending lots of positive thoughts your way! I will be sending your letter soon, you should get it just in time for your homecoming return.
I LOVE the new hair-do! I want to go that short, but I'm just not brave enough. You go girl, it looks awesome on you!
Good luck starting chemo tomorrow. I know you'll do great! I'll be thinking about you!
Lots of hugs from NC!
Robin said...Dang... Blair beat me... she has faster fingers! :)
I'm sending lots of good thoughts and well wishes for tomorrow, too. You'll do fine. I"m sure of it.
Your hair cut is cute! I agree with Blair that it looks great on you!
The birdie pants are awesome! Love them!
More mail on the way from me. There's a card going out tomorrow morning.
Hugs from me, too!
Mindy Jones said...Praying for you! Your strength is an encouragement. Love ya sister. -Mindy
Robin said...Sending good thoughts....
heather said...April, We are praying for you.
mindy said...Josh and I are praying for you too. I love your new haircut and your birds; what a great idea to keep you connected to Matthew 6. Good words.
Blair from Swap-Bot said...Hoping that things are going well today with chemo!
Robynn's Ravings said...Your hair is darling and just think - if it falls out, as soon as it comes in you'll have your exact hairdo back! And maybe even curlier! I've known two friends who have gotten THE most gorgeous curly hair after chemo.
Your room is great! So smart of you to bring personal touches and looks like lots of room for visitors. Wish I wasn't in California!!
Love to you and prayers ALWAYS on your behalf,
Robynn
Robin said...Just wanted to let you know I'm thinking about you.
Much love and a big hug.
The information in BLUE in this post is technical information I copied and pasted from the internetThe 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.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 considerheadcoverings.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
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…
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…
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…
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…
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…
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…
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…
One of my on-line friends, Robyn suggested I reward myself with a Dr. Pepper following my procedure…I did…and it was GOOD!
Church yesterday was really good and I plan on writing a bit about that in a separate post…possibly tonight, we shall see…
Robin said...Hugs! I thought about you lots today. I hope it was okay that I was with you in spirit today. I'll be with you tomorrow, too. Little mail going out to you in the morning, too.
Let me know if you need anything. I'm a PM away on SB...
Big hugs! Hang in there.
Amy {Design Intervention} said...It's not too graphic April - - it's reality and we want to share in your burden with you, so share away and we will be here for you!!
Amy Brewer said...It's your journey and I'm glad that you share, so those of us who live far away can still be there. Although I wish that I could be there with you and just give you a big hug! Know that we love you and are praying with you!
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…
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…
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)…
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…
I will not be going to work next week.
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.
I HAVE CANCER…I feel like there would be some freedom in that, does that make sense?
I am…OVERWHELMED
Jennifer Bowman said...April,
I wish I had something wise to say to you, but I'm sorry I don't. All I can say is that I am praying for you daily and I am sending you hugs. If you ever need to talk I'm listening!!
Love,
Jen Bowman
Joni Kamstra said...Hang in there April....I know this is a very overwhelming time for you! Trust your doctors and God....they will get you through this difficult time....((((hugs))))
Robynn's Ravings said...Sweet April, I'm so very sorry you're facing all these machines and pokes and prods and not officially having your diagnosis yet. What a LOT to be up against. But God is bigger and he sees you. Please rest this weekend and, as you say, process. Let people help you and help your mom. You can neither one do it all.
You will be in my prayers for a FULL recovery. Your attitude is amazing.
Love,
Robynn
Amy Price said...Thanks for the update, April. You are a strong woman of God and I am very inspired by you! We will be praying!
Zapolski Family said...April-
You are continually in my prayers and thoughts. I just found out last week that my dad has cancer and that another friend has cancer. I have never known anyone with it before and can't imagine what you have been feeling. It's good to know that we worship a God that has a plan for us and who truly loves and cares for us. I wish you the best throughout this journey that you are on. God bless!
-Heidi
Molly Stroud said...Hey darlin~
It was good talking to you yesterday. I said prayers for you this morning in my quite time. I know this sounds absurd, but I am praying that this will be the best thing that ever happened to you and that you will be able to look back and say "thank you God for allowing me to go through that because if I hadn't I wouldn't be where I am today. I'm sure you already know this, but God really does work EVERYTHING for good..... even cancer. I love you!
Anonymous said...Hi April,
I know you from Crafting Queens. Just wanted to let you know I'm thinking of you and wishing you WELL!
~Karlyn
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.
I’m thinking just a timeline/list type update will be the best.
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.
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
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.
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.
Here are some pictures I found on a google image search…
This is pretty much what the radiation machine looks like (the one at the hospital is black)
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
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.
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…
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.
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…
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!
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…
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…
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.
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!
Zapolski Family said...Still praying for you! I hope you get some more answers soon! Keep the good attitude during all of the annoying waiting time!
Last night found us on our way to the Emergency Room. Around 1:00 I decided to go to bed and after I laid down I just started coughing like crazy…when I went to the bathroom I noticed that I was coughing up blood, and got scared…After waking up mom we decided it was a good idea to go to the Emergency Room…
I have to say my experience with every ER staff was amazing! They were caring, concerned, proactive, and funny in the process…
First I got a huge dose of steroids via this IV…
Then they prepped me for a CT scan of the neck and chest…The chest CT scan required an IV in my arm so this happened…
it took two nurses and one doctor FIVE tries to get it in…and I have to say they hurt…all five of them! But I was happy to know I’m going to find something out….for some reason the needles wouldn’t go in far enough…
After the CT scans there was A LOT of waiting...the scans were sent to Australia to be read because it was daytime there…
While we were waiting the ER doctor Dr. Vaughn, called and spoke to Dr.Breckler (the doctor I will be seeing for the first time tomorrow morning) and the oncologist Dr. Mandel (whom he didn’t get but he did talk to his secretary who is going to call me today or tomorrow morning) to let them know what was going on and that he felt it was a huge priority that I be seen like yesterday…he didn't say it was cancer and we don't know for sure yet but he said it does look like that is what could be going on...I feel like if I can come to terms that it is cancer it is better because then if we find out it isn't cancer I will be relieved (does that make sense?)
Dr. Vaughn said at this point things are beyond Dr. Moss and that I should not get the surgery to remove the lymph node on Tuesday…he said there are a lot of lymph nodes in my chest (which is probably pressing on things) as well as my neck and that at this point we really need to be on top of this…He said if he were me he would be angry, and knocking down doors because it is ridiculous that I have been waiting this long with these kind of symptoms for answers…
I can’t tell you how good it felt to be taken seriously, I’ve known (in my bones) for a while now this is serious and was trying not to be demanding but in the end the need to breathe, swallow, and NOT cough up blood is proving to be more important than being patient April.
Right now I am pretty awake but I think that is the huge dose of steroids they gave me, because when I was on them before I would feel really jittery…so I am waiting to get tired and can’t wait to just sleep for a while, because anytime I tried to lay down at the ER I would start coughing and spitting up more blood. I’m good if I am just sitting but when I try to do most anything I get hot and start coughing…
I left the ER with 5 prescriptions…for pain, steroids, for coughing, an inhaler, and another one I can’t remember right now…we left around 7:30 a.m. then had to get the prescriptions filled and then a much deserved treat of a sausage biscuit and apple juice from McDonald's we got home around 8:30 a.m.
So there is the update…thank you to all who love me and care about what is going on…life has been scary for a bit and it means a lot to know I am prayed for and loved…
I leave you with one last picture of my beautiful mama…she had taken an Ambien before bed and was tired and had to sit in what I think looked like an uncomfortable chair all night…She has been great the past few months and is trying to be positive for and with me…she has kind of been nicer (not that she is ever MEAN) if you know what I mean…I love her and am lucky she is my MOM. (p.s. she will NOT be ok I put this picture up so don’t tell her k? )
update at 10:45 a.m. Sunday morning...the oncologist's secretary called and said that they wanted to see me late morning or early afternoon tomorrow...she said that she wanted me to be prepared that the doctor said he might just go ahead and admit me to the hospital tomorrow and start treatment...she said that he wasn't SURE that was what he was going to do but that I should know that it might happen...WOW! I'm not sure how I'm feeling right now...I was just starting to wind down when she called...but I am impressed and grateful they called me on a SUNDAY MORNING...I am so glad we went to the ER last night...
Amy {Design Intervention} said...Wow April - - we continue to pray :)
Molly Stroud said...I am praying for you. Did you get my message last week??
Love ya~
Anonymous said...April our we are all praying that things go good for you, PLEASE let us know if you need
any thing, Teresa Norrington
Robynn's Ravings said...Oh April - I am very glad you're getting answers and so sorry you need them, if that makes sense. Your dear, sweet mama. How worried she must be. You are such a sweet girl and I'm headed to bed right now with prayers for you on my lips.
With Love,
Robynn
Anonymous said...Okay, so I DO NOT validate the pictures of the IV. however, i am glad you are at least getting some answers since not knowing is your biggest pet peeve. love you lots, my friend. kenzie prayed for you in her prayers when i told her you were sick. Love, J.A.
Linda50 said...I am so glad to hear that you went to the ER and had to good fortune to meet Dr. Vaughn. praying for you. Linda
Yesterday I finished my 2nd prescription of steroids...and today I am feeling the effects...a few days ago, I forgot to take a dose of the medicine and had a really scary time of not being able to stand and feeling really weak like I was going to faint...once I took the missed dosage I felt better and was OK for the next couple of days...Last night I took the last pill and today found me feeling weak, sore, and my neck feeling HUGE, hard, and tight (which doesn't help breathing and swallowing)...sleeping today was sporadic, and I was ever aware of not feeling well...
I've never felt this weak before, this evening, I had to get out in the middle of my shower because I couldn't stand up...
I feel like there is something really wrong, and as much as I am ready for surgery on Tuesday, I am not ready to find out what it is...
I'm scared...
I came to work tonight and am not sure that was the best choice but it isn't like my job is one you can just NOT show up for...there are men here who can't take care of themselves and if the person coming in the shift after me called an hour before they were to come in and said they weren't I'd be really upset...no one wants to work a 36 hour shift...and missing a day is missing a day of pay and a half on the job I just got 28hrs cut from...there is no good choice....the women I work with are super supportive and I know that they will step up if I decide that I can't work tomorrow night.
I’ve not had a family doctor for the past year (I’ve gone to a place for prescriptions but never liked the nurse practitioner I always saw) so I have an appointment Monday morning to establish a family doctor…for the normal needs and also in hopes to help advocate or help me understand what may happen in the next few weeks. My ear nose and throat doctor does not have a good bedside manner and has not left me understanding what could be happening and he certainly hasn’t seemed to care about the tole this is taking on me physically. I’ve been told some things about him that confirm the way I’ve felt about him…but what do I care as long as he is good, right?
Amy {Design Intervention} said...you are in my prayers April - - - I know times are pretty tough right now - - praying you are able to hang on till Tuesday and that you get answers after your surgery!!
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