Sunday, August 29, 2010
Part of me loves to get back to the routine. I love to see the boys learning and growing. School is that place where my boys start building their own lives and I am enjoying watching their minds just take it all in. I however am not a fan of the morning rush to get us all to our destinations in a timely manner. I probably say "quick, quick" a million times every morning. My schedule is pretty tight from the moment I leave the house until we return around 3:00. The good news is it leaves us plenty of time in the afternoons and evenings for homework, dinner and even a little fun.
My first dose of carbo/taxol was on 9/12. My dear friend Jen went along for all the chemo fun. This new regime was suppose to take 4 hours. I factored for 5 hours just in case something came up. We arrive a little before nine and I am the only one in the whole place for awhile. I let the nurses know that I am on a tight schedule and would they plug me in as quickly as possible. I don't start treatment until 9:30.....I don't have much wiggle room. I remind them again that I really need to be on my way by 2:15 at the latest. It is not only me, but Jen has to be home to get her kids off the bus and we only have one car. I tell myself to breathe as I get hooked up to the pre-meds.
I think I start off with a giant dose of Benadryl. This could either wind me up or make me drowsy. The purpose of this drug is to lower the chances of my body having an allergic reaction to the chemical that the taxol is suspended in. I really love the sound of that, so during the drip drip drip of the Benadryl I start wondering if my body is going to have some freak reaction to the next IV. Nothing like feeling the anxiety build, this 5 hour tour is off to a great start.
The pre-meds go off with out a hitch. Now I get to see if I am going to have a reaction, they start the drip off sloooow, and I mean slow. Seriously Jen and I are watching and there is a good 20 seconds between drips. I of course call a nurse to make sure it is working properly, she reports yes, they speed it up in stages to make sure you don't have a reaction. I am a practical person, and this little bit makes no sense to me. This was like slowly taking my IV up to cruising speed for fear of a reaction. It apparently takes 2 hours for the drip to be advanced to its maximum rate. Great, I am not going to be finished until around 3:15. Time to call in reinforcements to pick-up the boys, and get Jen back to town. Thankfully Kate had a free hour to drive to PV and pick up Jen. They in turn helped with the boys and aunt Dan-Dan stepped in to help too. I love how the chaos just works out and I am so blessed to have the help of some really wonderful people.
Physically the treatment seems fine. I get my nuelasta shot on the way out the door, this is suppose to boost my white blood cells after treatment. I head home around 3:30 my kids are there waiting for me and I am worn out. I never know if it is the chemicals or the emotional toll that is so exhausting. I put something easy together for dinner and I turn in early with the boys. However, this treatment gave me insomnia, though I am completely tuckered out I can not sleep. My mind is zooming with all the toxins in my blood and sleep eludes me until about 2:00 AM.
I rise and shine the next morning and get the kids to school and myself to work. I don't feel that horrible, just dead tired from no sleep and there is a little chemo-fog in my brain. I make it through the day without any serious side effects. Towards late afternoon I start to slow down, by evening I am ready to collapse and the bone pain sets in. That's right my bones hurt, and joints too. This could be a side effect of the chemo or the neulasta. I spend the entire weekend on aleve and advil. The anti-inflammatories barely manages the pain, every step I took was very tender. At least I wasn't throwing up too, so I do have that going for me.
By the following Monday the pain had subsided. My energy levels seemed to be returning quickly. I start to feel pretty good. I have been walking in the evenings with the boys and the exercise helps clear my head. I am at this point with my physical body where I don't know how to read the signs very well. My joints hurt and I wake up stiff everyday. I am not sure if it is from the added activity, or the medicine. Like so many question I probably will never know.
Another side effect of the new chemo is that I am starting to lose my eyebrows and eyelashes. The fallout is slow but definitely happening. These two features are way more important then the hair on your scalp. It will be interesting to see what my face is like without them. I can always draw on eyebrows, but I have never been really good at this with my eyebrows as guides. The results could be a little scary. In the end all the hair will come back. I am grateful everyday that my body is coping with all the medicine as well as it is.
Tomorrow I am off to Scottsdale to see Dr. Berardi for the final check on my expanders. We are thankfully up to size and I will not have to be making all these trips to Phoenix every week. I will have to live with these uncomfortable expanders until probably sometime in December when my permanent implants will be put in. Hooray for new boobs, I never thought that Santa would be putting those in my stocking. Jen is going to the Valley with me tomorrow so I will have some company, and we get to go out for a nice lunch.
Thursday 9/2 I am scheduled to receive my 2nd dose of carbo/taxol. It seems like this ride just doesn't slow down. One minute I am at the Dr. for a lump and the next minute I am here, halfway through treatment for cancer. Wild, at this hour it feels kind of like a dream, I have travelled into the unknown for the better part of this year and I am still on that train going full speed. I guess that doesn't make me so different from anyone else. We all move forward into the unknown, all we can do is enjoy today.
I am thankfully up to the present.
Drink water and breathe.....
Monday, August 23, 2010
Sunday, August 15, 2010
I am getting closer to the present and we have officially arrived in San Diego……
Our plan was to arrive with enough time on Wednesday to allow for some beach time. We checked into the hotel and there was some type of mix-up our 1st room had a king size bed. That was not going to work we needed 2 doubles, the boys were way to big for all of us to fit. The room got sorted out in about a half-hour. The room was beautiful over looking the marina. I forget how green the plants are when you are near the ocean giant birds of paradise were everywhere on the grounds. The weather was cool and overcast a nice break from the summer weather in Prescott.
I ask directions to the beach from the young surfer bell-hop and he quickly has us on our way to Ocean Beach. Timing is everything and ours is great we get beach front parking and it is official we have arrived. The boys change into their swim trunks in the back of the mini-van (extra point for the mini). There is a sandwich shop across the way where we grab some sandwiches and more caffine and we head to the beach.
The day is sunny, windy, and absolutely freezing. The kids of course do not care they are jumping and playing in the waves. If the beach was not full of others doing the same thing I would have had the boys heads examined. None of that matters though there is something completely joyful and rejuvenating about being on the ocean. I could spend the rest of my life sitting on any beach watching my boys play, this is what it is all about.
We stayed at the beach for a couple hours and headed back to the Island Palms. The Blue Wave restaurant had a bottled wine special and the kids could eat for free, things always have a way of coming together. My plan was to not think about my leaking implant and have fun.
My plan was to not think about my leaking implant and have fun.
Drink water and breathe....
Drink water and breathe....
Thursday, August 5, 2010
One knows that they have aged or rounded a significant corner in their life when, you want to borrow a mini-van for vacation. Now I do have cancer and have undergone a chemo regime that may have altered my cranial chemical composition some how. None the less I found my self swapping my SUV for my mom's minivan for the Legoland trip. I had visions of the kids being towards the back, and Dani and I being able to walk back give them snack, settle any disputes, maybe even have a press conference, kind of like air force one, only a tad smaller. The minivan had lots of potential and I was anticipating it being a vital new member of our trip.
The mini arrives and the seats are in the two forward positions. Not exactly the plan, but oh well, the boys will be closer to me for the 7 hour car ride, I like intimacy. The cargo area is vast and as we are only going for 3 nights, loading the car is a breeze. The perfect excuse to pack absolutely everything you don't need, because you have the room. What the vehicle did lack was some kind of fabulous organizational tower that might fit between the two captains chairs to hold transformers, legos and all of the other kid entertainment in a tidy fashion.
My SUV had this perfect catch all, it was known as the back seat. The bench would function as shelf, storing all manor of toys in a delightful pile. Then it would transform to net, when they would take up a game of back seat tennis throwing various toy back and forth to each other. I don't advocate this particular game and toys have only been thrown one time in the backseat by my children EVER..... The bench can also become the wall, the boys when on each others nerves can pile things on the bench high enough to prevent them from touching each other. That's right the backseat of the SUV would allow for the boy to be a little more hands on, they could actually reach out and touch each other, a definite need for brother to brother antagonizing.
The final word SUV vs. Minivan, for this particular trip not so important. If we had it for last years 12 day National Park trip it would have made a huge difference. That would be my practical opinion, or perhaps I am not of an age yet that can fully appreciate the benefits of the minivan.
The minivan was loaded the evening of July 27th. We scheduled a departure of time of around 6:ish. When I vacation I add the ish so I don't feel like we are on a grueling fun "schedule". Getting up two hours earlier then normal is bad enough, I would hate to have the added pressure of being right on time. Thankfully Dani appreciates and understands that this open time line makes for way less stress when traveling.
The official departure time is 6:45 on the morning of July 28th, I have made bagel sandwiches for the road and we are off. The morning is cool, overcast and peaceful. I love traveling on days like this not to bright just calming. The first "How much longer until we get to San Diego?" rang out around 6:48 AM. We fielded this question with the utmost patience for the remaining 6 hours and 57 minutes. The actual number of times can not be reported in the blog as I don't want to negatively impact my readership.
The 1st stop was Quartzite. Sleepy, blazing hot desert community, that apparently is a mecca for the snowbirds. I have never been through when the snowbirds are in, but I have witnessed remnants of there nesting. They are empty plots of lands with about a 100+ APS poles sticking out of the ground in some kind of grid format. The high end ones have a cement slab with pole, the lower rents just have a little desert floor, "bring your own turf" is on the flyer. This vacant RV park is usually arranged around some type of office/clubhouse/mini-mart/bar/restaurant. The signs usually read "Best HH 2$ ritas", "Pasta dinner 5$", "STK dinner $7.95, free coffee", "Dancing Sat. nite". Perhaps this is the birthplace of texting? These cultural hubs are what truly fascinates me about Quartzite, I am so curious about what the hell goes on in these places. Someday when I am limited on material I may blog about the mysteries in the desert. What about the giant rusted fishing pole? I could go on and on. Our stop is not at any of these wonderful mysterious places as they are "CLOSED, for season".
We stop at McDonald's. The All American chain/rest-stop for my family. Thankfully they are only serving breakfast and I don't have to buy my kids a happy-meal just to secure the latest in Marvel Comic characters recently released from their Chinese prison. It is crowded and funky, and not in a good way. We escape with only purchasing a large carbonated beverage for the next push to Yuma.
We are drawn across the street however by a sign, large and painted by an elementary school child that reads "REALLY GOOD JERKY". I have to find out who thinks this? and who writes signs like this? and jerky after all is a road trip staple. We take our lives into our own hands by walking across that 6 lane road in Quartzite, nothing says vacation like 18 wheeler leap frog. Before we enter the building we go into this Arizona Bedouin style shop, that has all manor of things. Dani buys a sun hat for $3. Every thing you would need to fix or accessorize an RV is under one of these tarp constructed buildings, also enough tarps for you to start up a desert gift shop of your own. I really wanted a yard frog on a metal stake whose arms wobbled in the wind, but I refused to part with my 5 spot so early in the vacation.
Next stop jerky shop, it had quite possibly the coldest air conditioning my little bald head had felt.....ever. Kind of felt like a meat locker now that I think about it. One wall was filled with all manor of dried meat. Another wall was filled with over priced candies. The final wall was filled with all types of marinated olives, I have never wanted a martini so bad at 9:30 AM in my life. If there had been rows of vodka behind the cash register I would completely understand why snowbirders come here, this is mecca. Alas these are not my vodka days so we stocked up on "provisions" and hit the road. By the way if you are passing through Quartzite, and you are in to that sort of thing, the sign was right "REALLY GOOD JERKY".
Now I must blog rush to get to the present I seem to be slipping....farther and farther behind......
Drink water and breathe.....
I should get up to the present in the next few posts, this was the last week of July.
It took a few days to bounce back from my last A/C treatment. Then I began to notice something was not right with my left breast mound. I initially wrote it off to changes because of the infection I had earlier in July. It looked a little smaller then the right. They have been noticeably different due to tissue loss because of the excisional biopsy. It seemed even a little smaller then normal, I of course do not want to believe this. So I have to make some choices, do I call my Dr. or do nothing until I come home? There was no sign of infection, no redness or fever. The implant is filled with saline, I have been injected with it regularly in the last 4 months. I felt good, and what was the Dr. going to do? I doubted he would be able to patch an expander in my chest, I figured he was going to want to remove it. What if he couldn't put a new one in? Would I have to start expansion all over again? I so did not need to deal with this when I should be going to Legoland. So I decided to go on vacation and deal with the breast mound when I got back.
Sometimes you have got to go for fun..............I just told myself it was going to be fine, it's only saline.
drink water and breathe...........
Wednesday, August 4, 2010
On July 14th I received my final Adriamycin/Cytoxin treatment. Dr. Vu okayed me for treatment even though my immune levels were a little low. I was very happy to receive treatment as this would allow for my vacation plans with the boys. This treatment was very different from the 3 previous treatments. The first 3 treatments seemed more like "cafe" treatments, me and a girl friend chatting, playing games, with the occasional interruption from the chemo nurse to change drugs.
I was at the end of my chemo cycle and apparently was really worn out. This treatment started with my port not functioning properly for a blood draw. This regularly happens with my port, so I wait for the lab nurse to draw my blood. I was the 1st patient there, during the time they try to draw my blood out of my port a line forms for the lab nurse. Are you kidding me?? Now I have to patiently wait for her to stick a needle in my arm. The chemo nurse volunteers to draw my blood to expedite the process. What the hell, I am all for efficiency. Now Julie seems like a competent nurse so I am not more anxious then usual until I see the beads of sweat on her brow. I gently remind her that I am terrified of needles and would she please be extra careful. I swear she pulled out my arm and closed her eyes and jabbed! She of course completely missed my vein which is the size of the Mississippi River, so she leaves the needle in my arm for about 10 seconds. I think she thought that my vein might magically jump over the 1/2 inch and pierce itself on the end of the needle. I finally told her to remove the needle and I would wait for the regular lab nurse to draw my blood.
We were not off to a good start. When I finally get plugged in and treatment begins, I just find myself very emotional. My eyes had been tearing occasionally and I thought it was a result of treatment. I later blamed it on my excessive use of sunblock. On this day I think it was a combination of sunblock and emotions. My final treatment of A/C was a milestone. I was one weary traveler, this was the end of my six weeks of this particular medicine coursing through my veins. Hard to explain it Kate and I just sat and chatted for the duration of my treatment and I found myself tearing up the entire afternoon. It seems like I had saved just enough energy for this treatment and I was done. I was not taken over by overwhelming sadness just a tender sorrow that I can't quite explain. I felt fragile, and my body did too. I didn't think I could physically handle one more of these treatments. The clincher is that I haven't had it so bad, some people SUFFER through this. I was definitely off my mental chemo game.
Kate and I went to lunch after chemo, Indian food....................hmmmm sounds like it might not be the best idea. Kate dropped me off after lunch where I began to sleep it off. Thank heavens for my air conditioner I would not have survived this summer with out it. I crawled into bed and began napping. I woke up to some severe nausea around 5:00, at which point I threw up all of my lunch, the Indian food was certainly not a good idea. I took a pill drank some water and crawled back into bed. This was as bad as it has been. I felt like I was at maximum toxicity, in my mind I could smell the toxins running through my body. I just kept guzzling water and hoping that it would stop.
It took me a couple of days to bounce back from that treatment. I did however get clearance for vacation with my next type of chemo not starting until the 1st week in August. Time to heal, take my own advice and drink water and breathe.....
Look out Legoland here we come.