Cycle 1 / Coping, or trying my best to.

I finished my first week of chemo this passed Friday.  I felt ok during the week except spent a few hours up on Wednesday night with really bad nausea.  It passed on its own, thankfully.  I was supposed to be at the hospital on Monday morning at 8:15 to start my chemo.  Up until then I still didn't know if I would be admitted, if the chemo would be 3, 4 or 5 days long, or what regime I would be getting.  Having met with my oncologist on the Thursday prior she told me I would be getting two IV drugs and that it was purely for comfort and quality of life (shrinking the tumor to relieve the pain from my sciatic nerve root being pinched and therefore reducing the amount of pain medication I am currently on- which is A LOT).

When we got to the hospital on Monday morning we waited around until close to 2pm before things got underway.  We were getting frustrated because we didn't know what the hold up was and I thought for sure I would have to be admitted because of the delay.  My oncologist came in to tell me that they were waiting on the final details of a new protocol that was just released a couple of weeks ago.  They handed us a copy of the study and pamphlets on the chemo drugs that were going to be used.  My oncologist seemed to be a lot more optimistic than she was the week before during my consult and said they have been seeing really good results with this new protocol.  One of the chemo drugs I required is an oral chemo and there are only so many kept around Fredericton at a time.  It is a drug called Temodal and it is typically used to treat brain cancer.  They have found that this new combination works well with a recurrence of Ewing's Sarcoma.  The pharmacist  was able to track down enough pills for me to start that day and have enough for the next and then they would worry about ordering more.  The pills are worth $875 each and I need 2 a day for 5 days.  I am fortunate to have 80% medical coverage but that is still an extreme cost. I feel horrible for those that are unable to afford the medication which is not coverage and therefore may not be receiving the best possible treatment.

I may or may not lose my hair and frankly I could care less at this point.  I have already gained weight from the steroids and am water-logged.  Each of my 5 drugs has about 50+ possible side effects.  One major side effect I have noticed is how easily I bruise.  I used to bruise easily but now I just wake up and my legs have 5 new bruises on them.  I have been feeling some nausea but it seems to pass on itself and I hope I can manage.

I started with Cylce 1 which is a combination of 3 drugs on Monday and then have 2 chemo drugs from Tuesday-Friday.  I am always in for the longest period of time on Mondays and then Tuesday-Friday I take my oral chemo pills at home (gloved up) and then go to the hospital an hour later for a bag of chemo that runs over an hour.  Cycle 2 will be a combination of 3 IV drugs.  Three will be on Monday and then 2 each day for the remainder of the week.  The difference with Cylce 1 and 2 is that I get a solid 2 weeks off between Cycle 1 and 2 but Cycle 2 I have to go in every Monday on my "weeks off" for a 15 minute bag of one of the repeat medications.

I am having a hard time breathing.  I can feel the cancer in my lungs and get winded easily.  I try to walk but some days am just too exhausted and when I do walk it is not very far or fast.  My body hurts inside and I just hope the chemo can start working soon and get rid of the cancer faster than it can grow.

I thought I was doing an ok job coping with things but I have had a very rough past few days.  I don't sleep at night and have to be up fairly early for more meds.  Nights are the scariest times.  My mind races and never shuts off.  I have been trying to knit a bit, watch movies and read but I just can't focus on anything.  I have seen some friends but I haven't been feeling well enough to venture out and I need lots of notice for activities at night so I can nap.  The amount of love and support I have felt has been overwhelming and I can't even wrap my head around it.  I just wish I never had to feel this way and have people reach out to me in so many ways.

I find that a few people have already written me off and some comments I have received have been mind boggling.  Asking me what I plan to do with my dog and if that will happen soon, etc.  There are a lot of people who say they will be there and "yes I want to see you" but I never hear from them.  I am used to that from last time.  I found it to be shocking to see who stepped up and back into my life and who I thought were close friends and left me.

I know it is extremely hard and awkward for everyone and no one knows what to do or say.  All I can ask is that you remember what makes me me and what I like to do.  Two of those things are: eat and laugh.  If you can do that you have nothing to worry about.

I am going to have my PICC line cleaned tomorrow afternoon and my mom is coming for a refresher so she can do it for me once a week at home instead of having extra mural in to do it.  I hate showering with the PICC and find that bathing is easiest and just avoiding the PICC altogether and washing my hair under the tap.

I will blog later this week about all of my alternative treatments I have researched and those I have chosen to partake in.  Some doctors are very conservative and hesitant but all I say is, what the hell have I got to lose.