Wednesday, July 18, 2012

Scattered...

i know i disappeared for awhile... sorry.  i kinda figured i have complained enough about interferon... and if i didn't have anything new to say i stayed quiet... then i had something new happen and i stayed quiet... then the melanoma community lost an amazing warrior... so here i am again.

let me start with the new thing that happened... after a shot i had a large swelled up bruise in the location of the injection... turns out it was a cellulitis... and i think wikipedia explains better than i do...
Cellulitis is a localized or diffuse inflammation of connective tissue with severe inflammation of dermal and subcutaneous layers of the skin. Cellulitis can be caused by normal skin flora or by exogenous bacteria, and often occurs where the skin has previously been broken: cracks in the skin, cuts, blisters, burns, insect bites, surgical wounds, intravenous drug injection or sites of intravenous catheter insertion. Skin on the face or lower legs is most commonly affected by this infection, though cellulitis can occur on any part of the body. The mainstay of therapy remains treatment with appropriate antibiotics, and recovery periods last from 48 hours to six months. 
i was very fortunate that i was immediately put on antibiotics and it went away-ish... i don't have that particular infection anymore... but have since noticed that now my injections cause a rash.  i am just grateful they haven't been bruising up, that was really scary. 

i am also dealing with insurance issues... and a few other stresses that made me go underground for awhile... i know writing this helps me process everything, but i lost sight of that recently.  i felt like all i was doing was being whiny... ya know they warn you interferon will affect your emotions... but i didn't realize how much until recently.  i have 2 little people, and i thought pregnancy was an emotional time... but in comparison i was a rock then. 

that brings me to the loss of another amazing warrior... as part of an online melanoma community it is hard to hear about the loss of another melanoma warrior... but some are harder to hear about than others... maybe its more similar personalities... maybe its similar family dynamics... whatever it is- some news is harder to hear than others.  unfortunately we have lost a few warriors recently... maybe it was all that added together... i don't know.  but all this loss has got me sitting here typing again... in hopes that i don't just help myself, but others...

sorry if this post is hard to follow... i feel kinda scattered recently... and i have a dermatologist appointment tomorrow... will try to post more regularly...

Thursday, March 15, 2012

yuk...

feeling gross... had my shot late yesterday... it was my little man's fieldtrip to the zoo... he had a fantastic time.  my hubby went as a chaperone... wish i could have, but my energy level would not have kept up with 3 kindergarten boys... and since my hubby gives me my shot it waited... i've already known that the later in the day i do the shot, the worse i feel the next day... but some things are worth sacrifice for our little people.

i know its been awhile since i posted... sorry... but i honestly havent felt like i have anything new to share.  i really dont want to be taking the interferon anymore... i am tired of feeling like crap...

Wednesday, February 15, 2012

Home Shots...

last friday was my first at home injection... mondays i still go to the cancer center for labs so they will continue to give me monday shots... and last wednesday i brought my hubby with me so he could learn to administer them... then friday was our first.  we experienced some technical difficulties... apparently the center forgot to tell my hubby to use the larger gauge needle to draw the shot, then switch to the smaller gauge to give the shot. 

not to mention we all overslept on friday... so my hubby had to dread giving me the injection all morning at work.  not good.  i think its bad dreading the shot period... but my hubby, like myself, hate needles... yet he is willing to do anything for me... it may have taken a little longer than should, but we got it done...

i have mentioned my past a little in previous posts... i used to party hard... gave that up in 2005.  but to some of you you might consider me off the wagon after i discuss this next issue... i am a medical marijuana patient.  i was taking zofran, and compazene for my nausea at first when my chemo started... i realized they only seemed to make my nausea worse... to the point where i was so nauseaus my back would begin to hurt, almost like back labor pains... so very painful.  then a friend of mine talked to a friend of theirs who is highly involved advocate for medical marijuana... they said to find certain strains- those were the ones in the purple and lavender families... said they are the best for chemo and helping with nausea and appetite (in my first month of high dose i lost nearly 20 lbs)... oh the difference a joint made... no more back labor pains... and i could actually eat again...

now my only issue is the medicine is doing its job... breaking down my immune system... i have had an awful cough for almost a month now... can't seem to shake it.  drs say to try using a vaporizer for my medical marijuana... i did, but then all i taste is the plastic tubes from the vape... i would eat it, but that gets pretty expensive... and since it is an election year all the medical dispensaries are currently shut down.  if they were still open i could continue to discuss compassionate care with them... basically meaning that they help patients like myself with either extreme discounts or for free.  but like i mentioned its an election year... so the federal government ignored our presidents wishes to allow states to choose for themselves... 

i am actually having more issues with the interferon... but now that i can eat again they seem so small... i still experience the chills/fevers after a shot... but fortunately thats only 3 times a week now... not everyday.  i also get very bad joint pains... mostly in my hips and legs... but i have gotten joint pains in my hips since i had little man, and they got worse after having princess... now they are just way more intense and radiate down my legs.  when i first told the cancer center they tried to prescribe me demerol... i refused it.  in my past i had issue with narcotics, and demerol is no joke of a narcotic... so i only smoke to get through the pains.  and it does help, but if anyone can think of any other more homeopathic ways to control the pain i am all for hearing them...

oh, and on the day of my first home shot my hubby noticed a bald spot.  i was sitting in front of him at the time... i immediately went to the mirror to try and see it... that didnt work because of where it is located... so i made my hubby take a pic so i could see what he was talking about... almost like i didnt believe him.  so as he took said pic he reminded me he has often seen the back of my head... but never a bald spot, until then.  i knew i was losing some hair.... but i was hoping for it to just thin some.  apparently i am not so lucky.  but for now its only one spot... but if i get too many i will go for the g.i. jane look... then get a wig... i will try being a redhead because i have always wondered what i would look like with red hair.  i never wanted to dye it because of all those chemicals.

sorry this post took so long to get to... i still want to get the word out... its just hard while doing treatment.  hopefully we get used to this home shot stuff soon... then i hope to get back to posting more often.

Friday, February 3, 2012

Week 4...

my arm hurts so this will be a short post... but i wanted to let you all know i made it through 4 weeks of high dose infusions daily... monday will be a shot instead of infusion... then wednesday and friday too... i just don't know if i will get shots at the cancer center, or do those myself... i won't find out until monday. 

Saturday, January 28, 2012

Week 3 Complete...

this was a rough week for me... after treatment on monday i ended up with an awful headache... the physian assistant for chemo said it was probably a migraine... and it lasted 3 days... but thursday it wasn't there when i woke up... and friday was a better day too.  i have to be really cautious to stay hydrated... and it is difficult... i drink about a gallon of water a day now... and i still get dehydrated.

that didn't stop me from going out today tho... it was a gorgeous day... and there was an event for little man's school.  we went for about an hour and a half... basically just long enough to have lunch so the proceeds would go to the kids' school... and for the little people to get crazy amped up... 

we also tried to take those crazy children to the store... but we ended up leaving early because i don't have the energy or the patience i used to... i even had to take a break on a random empty bottom shelf in the store... an older lady offered me assistance... i explained i was just tired.... but there was alot of concern in her face so i briefly explained "i am in chemo monday through friday... my energy just isn't what it used to be."

i have one more week of daily infusions at the cancer center... then it is on to self injections for the next 11 months... they are sub cutaneous shots so i have been told they go someplace fleshy... i have plenty of cushion so it shouldn't be too awful... it's just the idea of giving them to myself that is wicked scary...

Friday, January 20, 2012

week 2 done

i am  halfway through my first month of interferon... still no internet at home... that should be back on late next week... and i will write more then... just wanted you to know i am alright

Friday, January 13, 2012

Friday the 13th...

friday the 13th and the last day of my first week of interferon.  my iv cocktail infusion has been making me super tired.  i got home from my cancer center around 1pm then slept til almost 5pm.

to be honest i am still kinda out of it.  i just wanted everyone to know i am ok.  i will write more another time.

Wednesday, January 11, 2012

Day 3...

i just came from my third infusion... day 1 was monday the 9th... they had to do lab work first... then saline drip connected to my picc line... then 3 more little iv bags- 1 was for nausea, one was for pain, and one was benadryl... i had never knowingly had benadryl before and told my nurse... she said it will go one of two ways- it would either knock me out... or it would give me restless legs... but before she could get that last sentence out my legs were jumping all over the place... so she gave me something for that too... then the interferon after all that... so i was kinda out of it on day 1.  i ended up sleeping most of the day away.

day 2 seemed to be much better at first... my iv cocktail was only the saline, half the amount of benadryl, and the interferon.  i felt great after the infusion... i had energy and wasnt all groggy... until early afternoon i noticed my hip was hurting again... i took a tylenol, it kinda helped... but within the hour i was getting the chills.  i ended up under 3 large quilts... with a space heater aimed at me... it wasnt warming me so my hubby came home early to take care of me... once he got me warmed up i fell asleep.   when i woke back up i was dehydrated and feverish... took more tylenol and tried to eat... not the greatest idea... but i tried.

day 3 just finished my infusion about an hour ago... so far i feel fine, but i learned yesterday that doesnt mean much...  i just wanted to update everyone on how things are so far...

Friday, January 6, 2012

Just My Luck...

picc line was inserted yesterday... my hubby drove me... that is both fantastic and frustrating... he is not patient when at a drs office or similar... especially if they provide free coffee in their lobby... or if they go more than half an hour over a scheduled appointment... and yesterday was 1 1/2 hrs after my scheduled time.

after i was given a gown, changed, then brought to procedure room... my hubby calmed as i was changing... thank goodness he did or i might have ended up running away after you hear what happened next... the nurse called 911 to rush the person who was ahead of me to the hospital.  fortunately my hubby was in good spirits at this point and started cracking jokes to keep me mellow.

there was some question over why a picc line and not a port for treatment... i am hoping to have a better idea monday.  but i believe picc line was prefered because the first month of interferon is daily infusions.  i do know they placed the picc line in my dominant arm... the non dominant arm has a severely atypical mole that will be getting cut out.  i am hoping my arm will feel normal again once this thing heals...

Tuesday, January 3, 2012

MIA...

sorry i have been MIA... i wasnt trying to be... but first my comp had 123 viruses... and then we let the internet bill lapse to make a better christmas for the little people.  not sure when i will be back online since the bill is part of a bundle... but i will be back.  i go in thursday to have a PIC line inserted... then start interferon on the 9th.  i am not looking forward to it, but i am doing it...

i hope the holidays were pleasant for all... i know i discovered another warrior lost her battle just before the new year... the silver lining is she was able to spend christmas with her family... just didnt make the new year... randi will be greatly missed.  she was an inspiration to me and many others.  my thoughts and prayers go out to her family and friends...

i was also trying to stack my luck for this new year... i have heard if you eat black eyed peas on new years day then you will have a good year... the last time i tried this was 2006... and that was the year my son was born, and i married my soul mate.  since hindsight is 20/20 i see that was a really good year... and even if i didnt like the taste of em... i shoveled as many black eyed peas as i could stand... 2011 was a mixed year- some good, some bad... but i gave in to my superstitious side this new years and tried to stack a little luck to make this year a good one... i know it sounds a little crazy... but if you knew me then you knew i was already a little crazy... then a cancer diagnosis.  i am just happy 2011 didnt bring me a rubber room... but i am learning i have more strength than i knew i had...

i will try not to be absent so long before my next post... i want to be able to share my experience on interferon... since that starts next week i will try to pop in at some point and update...