Friday, July 30, 2010

Soreness

Friday July 30th, 2010

Today was a big day, I was able to shower & wash my hair while sitting on the shower stool but I couldn't shave, my eyes are still a little off & I didn't want to risk that with a razor. I was able to eat without nausea or taking my anti-nausea pills that would make me sleepy. I was able to build the border of a 1,000 piece puzzle with the help of my niece and organize some pictures that our sister had developed for me since the start of my cancer journey. All with severe soreness in my back and arms and shortness of breath. I was able to unload the dishwasher. Small things are big things to me. Reading & catching up with friends are reserved for days like this.

The big highlight, eating the enchiladas that Jenny made. Little did I know that the Chihuahua cheese had Chipotle in there, spicy, only to be taken down with sour cream. Rice and refried beans. We'll be making music in our household tonight. Washed it all down with a root beer float. I'm asking for it, aren't I.

We'll see what tomorrow brings. Thank you God for gettting me through a rough day. Happy Birthday to Gus!

Whirling dervish

Thursday July 29th, 2010

Today I had another appt. for labs. This nausea and dizziness was taking it's toll on me. It's hard trying to stand & wash up in the sink without wavering too much. At least I brushed my teeth sitting down. Trying my best to look stable in front of the family. I did tell them in case I ended up on my butt. I keep the bathroom door open, I'd hate the thought of being stuck behind it on the floor.

Joan, dad's girlfriend, had come to take me. It was fun giving directions when my vertigo was kicking in but we made it to UIC's parking lot. The extra stimulation from traffic, the wide open spaces, and people walking in different directions really made my head spin & the nausea worsen. The Compazine didn't work so I took a "Queasy Drop". I leaned on Joan from the parking lot until we saw a doc who knew me from the VA & now works in the onc clinic. He was kind to get us a wheelchair while we found a bench. I just couldn't see straight.

We made it to the clinic where they quickly got my labs & VS. I was dehydrated, my heart rate went up when I stood up but my blood pressure dropped. I told them of my dizziness and nausea being worse. Plus I was cautious about intaking more fluids since I had that crackles in my lungs the last time. They got me in the back right away for more fluids. Vera came & saw that I was almost wretching continuously and ordered 5 mg of Baclofen, a muscle relaxant. My tumor is putting pressure along my diaphragm and the medication did work after a while. I did feel a little better with the fluid, plus I dozed off for a bit. I think the dizziness was pretty much my vertigo, I had the ringing in my ear slightly. It might be something I have to deal with each chemo session for a few days. I was told that my Phosphorus was low and my hemoglobin is trending down but they're going to watch it. Having basic electrolytes off kilter can make one feel crappy too. I learned that the hard way in college, drinking too much Maalox while studying and dealing with heartburn. The nurse recommended that I drink more milk. No problem for me. Other than that, the rest of my labs were decent. We rolled on back to the garage in my styling borrowed red wheelchair. I'm not above riding in one if I need one.

On the way home, we stopped @ Suzy's Beef on Montrose. I ordered safe food, chicken in a pita and an Oreo shake. Well I don't know how safe the shake was but it called to me. Joan got the chicken too & a Black Cow. We went home to eat & now I know my brother, Joe, would be able to take me every other Thursday if I have appts., he was over visiting & told me his schedule. I thanked Joan profusely for everything she did for me that morning. When you feel down & helpless and can have someone to lean on for support, literally, it's a big emotion that gets to you. I'm not a light person to tote around. I took 2 bites of the sandwich but sleep was calling me. That Baclofen was stilll working. I again thanked her & took a nap.

Later, my friend from UIC & nursing classmate, Maria, called. She was in the area & wanted to stop by with her husband. I said it was fine, I'm not in my shining glory & was in my nightgown. Basic chemo attire @ home on lousy days. She said to just throw a robe on. She's used to patients as well, we're all nurses. I did put my clothes back on for their visit. David was home @ the time and we were able to chit chat. I wouldn't be able to make it to their daughter's first birthday party, I have my goddaughter's that same day. I hope I'm up for that as well. It'll be the weekend after my smaller chemo dose, I hope that doesn't take me for a ride and if I'm able to get it in the first place depending on my labs. They showed me pics of their cutie pie. She's gotten so big. Unfortunately, sleep was calling me again, they understood. They have a relative also going through her cancer journey.

I napped again and was awoken to the aroma of Sloppy Joe's cooking. I had half a sandwich, I didn't want to push my nausea button. I did it without taking a Compazine, I was sleepy enough. I was able to eat some potato chips which has 4% of phosphorus :o), carrot sticks and water. I followed it with a pomagranite fruit bar and later with some cookie dough ice cream. I'll try to eat healthier tomorrow. I've got a date with that hummus. Speaking of dates, my sister & niece had a date to watch the premiere of Jersey Shore in Florida. I however spent that time catching up with my coworkers on the phone. Sharon had sent me more pictures of the staff telling me to hang in there & to keep my spirits up. It'd be nicer to see them in person. Maybe when my balance isn't off I can get Marie to drive us there. I think they'd rather meet up @ a restaurant instead.

Please, if you can continue keeping my brother & his family in your prayers too, that'd be great. Things are looking up, I hope they continue in that direction. Thank you and good night.

Wednesday, July 28, 2010

A nice visit

Wednesday July 28th, 2010

I woke and took a nice long shower. I had used my shower stool just in case I wasn't fully recovered from my "wobbliness" from the day prior. It was with me but not as much. I was able to stand to wash my hair, it needed it. A good shower really perks one up and gets the blood circulating.

My friend, Odette, came by and had brought some yummy homemade hummus and other tasty items to go along with it. We didn't dig in right away but I've got plans for that. We chatted until Marie got ready to come with us. The nausea was waving it's ugly head so I took a Compazine just in case. We went to lunch @ the HIP, that's Harlem & Irving Park Plaza for those not familiar with the Northside. We dined @ Pizza Hut/Wing Street so we got the best of both worlds, a personal pan pizza, salad, cheesy garlic sticks with sauce, 8 wings, 2 flavors, and artichoke dip. Yes, 3 ladies attacked it but we didn't polish it off. We took the leftovers home. Waste not.

We then hit the Borders bookstore right there in the same lot. We all came home with a book or several. For the horde I brought home, I only paid about $65.00. They had a sale of books for $4.00-5.00 and other decent bargain books. I got a book by Joan Rivers, The Memory Quilt, Chicken Soup for the Cancer Survivors Soul & some books for Marie for being here for me and taking care of me. I thanked Odette for a nice day, spending time, for the food & getting me out of the house, even for a little bit. Sleep was calling me, that Compazine will do it but it also does it's job of keeping the nausea @ bay. Good.

ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ!

I woke to dad making dinner. He found a nice organic grocery store in the suburbs called Mariano's. He said it's a cross between Costco & Jewel. They just opened a week ago. He was very impressed with the quality and cost of the food and the dress attire of the staff in black & white. The cookies are so fresh that they're still warm when they're placed in the box. The fruit is very big & tasty.

I made a few more phone calls, one to Odette to thank her again and to apologize for almost falling asleep, she understood. Then I was able to chow down. Dad had put out so much food, we'll save the hummus for tomorrow. Darn that nausea, but it had been more than 4 hours since my last dose, so I took another tablet. I'm averaging 2 tabs a day, not too bad. Marie's friend, Adam, came by to visit, it's nice seeing familiar smiling faces.

I'm trying to be up-to-date with my blogs before I try to get to bed early tonight, got more labs in the am. I hope the fluid in the lungs are lessened I didn't get the parsley but would a Pepsi do? I'll find out tomorrow. I also have to sneak Widdo his Benadryl in his food. He really doesn't like it in the syringe directly into his mouth so I'll have to buy more dog food to hide it in. He smelled it in the half can I gave him, I added more food & he took it down. It's hard
keeping his brother, Hairy, for sneaking morsels off Widdo's plate.

At little less drama today but getting out of the house was nice, as hot & humid as it was. I'm glad the vertigo wasn't as bad as the day before, I was able to shower, spend time with a good friend and family and eat good food. I also caught up with more coworkers, family and friends via the phone & computer. As you can see, I'm thanking God for every day I get. The cancer pain started in January, I was told "6 months to live" when I was diagnosed in June so technically I'm already past that 6 month time limit, I'm going off with the start of the pain, not the day it was diagnosed. I'm trying to keep an eye on my dog, even though I gave him his meds, I hope that Benadryl will work soon. I don't need to spend my night in the ER vet. Please no more drama & vet bills.

Tuesday, July 27, 2010

Good news, bad news

Tuesday July 28th, 2010


After another restless night, mind you I had to sleep with the Huber needle still accessed in my portacath, don't want to roll over onto that. I woke to go for my follow up appt., Dad drove & I told him how I was feeling a little off kilter, so he dropped me off closer to the building before he parked. I got my labs and my vitals showed that my heart rate was still in the 120's I gained 5 lbs since the day before, they believe it's from the fluids but my ankles and feet weren't swollen, and I had 5 temperatures taken ranging from 100.1F in my L ear, to 98.2 under my tongue, to 99.8FF in my R ear by one nurse. She said to wait in the lobby. I asked her if I could eat some crackers, she said, "Yes". So I ate a few. The 2nd nurse checked my temp. under my tongue and got 100.6F, then we waited 5 minutes and it was 98.3F. My abdomen, for once, wasn't very tender to touch. I went over the medication with Vera to make sure I have everything I needed, since pharmacy was closing the day before. I did pay for the meds today. However, when she listened to my lungs, she heard crackles in my R lung. She wants to give me one tablet of Lasix, a diuretic (meaning a pill that pulls the excess fluid from your body & you urinate like a racehorse for a while). I was informed that it has some cross reactions of another medication that I'm allergic to called Bactrim. I get rashes from Bactrim, an antibiotic. I had asked her if there's anything else I can try to avoid the potential rashes and she said parsley, about a 1/4 cup. I'd rather give that a try.

My hemoglobin is slowly going down and I may need a blood transfusion if it keeps trending that way. Another solution would be to get Epogen injections which I might have mentioned before in my blog but again, that could cause DEATH, so I'll try the transfusions first, if the need be. Needless to say, I was given the green light to go home, no extra fluids and I got the Huber needle taken out of my chest. Yeah, now I can shower.


My cell phone was on the fritz and I was using my sister's old cell phone. Her newly charged cell phone was dead by the time my appt. was over. What the heck. I found out later that being in certain environments wear down batteries quicker ie. being around medical equipment, in basements where reception is poor, etc.. I was still feeling "woosy" so dad brought the car around to get me and then let me borrow his cell phone. He had a message from Jenny that Widdo Poopie had a swollen face and was breathing weird so Marie, who happened to be home, rushed him to the vet. Where he received a Betalog shot, which he's had multiple times in the past and had no problems. On the way home from my appt. we went to get lunch & pick up Widdo. Dad got hot dogs from the Hot Dog Stand that I had mentioned earlier. I had to wait for Widdo so he went home & told me to call him when I was done. When I saw Widdo he had red spots in his L ear, hives on his abdomen, penis & his L eye was swollen. My vet didn't have any Benadryl in the office, he just came back from taking care of his ill mother-in-law and the fill in vet, if she used it all, didn't replace it. So he recommended Benadryl OTC (over the counter). Now I was wondering if the hives were due to the Betalog shot he just got, could it have been a delayed reaction from the penicillin shot or the Triamcinlone pill he received yesterday?

Either way, I called dad to come get us. We were on the way to get the Benadryl when I asked him to take us to another vet where they're open longer hours and would have Benadryl for him. They took me relatively quickly and gave him the medicine. We waited 30 minutes and his skin was back to normal. Sigh of relief. I had been to this office before for the dogs and cats when my vet was closed. Some of the veterinarians had gotten to know me very well and I told them of my cancer journey. One in particular, her speech gave me words of encouragement and she said that I was still looking good for what I've been going through. I thanked her for all she's helped me with and she wished to continue seeing me, to help with with my pets and gave me a hug.
Dad & I had stopped briefly @ Walgreens to get the children's Benadryl and we ran into our sister. Dad kept Widdo in the car with him almost forgetting that the dog couldn't go inside. Doh!


Now can I go home and eat? The hot dog wasn't as good as I was expecting but it got in my belly. I was going to rest, made a few more phone calls, then my sweetie, Gabriel, yes, he has a name :o), came by to visit. He let me rest my legs on his lap while I laid down on the couch & I kept getting more calls. He was dozing and so was I. My dogs had gotten on each side of him. We could've fallen asleep when dad called that dinner was ready. We chatted about our days, lab findings, his relative coming to visit, etc.. He didn't stay for dinner which was smart, it was blended leftovers from the past few dinners stir fry. I walked him to the door, we hugged & kissed "Good Bye".


I was feeling quite nauseated after dinner, no it's NOT due to dinner, this nausea after chemo has hit me quicker this time, last time it was good 3 days after receiving it before I had to take the Compazine, so I took one tonight. I didn't have problems sleeping. Just as a precaution, since Widdo is on Benadryl & I'm feeling nauseated, I changed my sleeping arrangements to the couch. I didn't need him rolling off the bed & I wanted to be closer to the bathroom in case the pill didn't cure it. Come on day #5, that's when the nausea usually goes away.

Thank you God for getting me through another day. As wobbly & worrisome as it was, it's over. Another day tomorrow, let's see what it brings.

Monday, July 26, 2010

Round 2. Ding! Ding!

Monday July 26th, 2010

We (dad, Cathy & I) went to see my oncologist today to get more labs and if they were fine, to get my 2nd round of chemo of the Gemzar & Cisplatin. After getting VS (= vital signs ie. heart rate, blood pressure, temp., weight, respirations and pain level) and labs drawn, I saw Dr. Mehta and he had his doctors examined me. My NP (nurse practioner) Vera also came to see me. They all noticed how SOB (short of breath) I was, not that I was a "son of a b*$#*!". My heart rate was also up, around 124 bpm (beats per minute). Just like a health care professional minimizing her complaints I said, "Well, I've been upright for quite some time, I ate right before I got here, and we had parked in the garage 2 buildings and a bridge away." People ask, "Why don't you get dropped off @ the front door?" As much as I lay on my back, it's good for me to get some exercise while I can. I take my time, huffing, puffing and waddling. I'm sure when I pass out that they'll take it as a sign to pull the car around for me. Just teasing. I do need to get up and move otherwise one has to worry about blood clots from being stagnant, bed sores, and a bunch of other infections. Hey God, can you change this cancer into a baby? My belly looks it, but not the "girls". Again, I'd rather have one than cancer any day.

Widdo Poopie, yes the runaway and gum infection dog, had swollen jaws so Marie was kind enough to get him to the vet for me, AGAIN! I'm getting her ready to have him full time, if and when the time comes. She's doing a great job. Now if only I can teach her to give him the medicine...yeah. She, my whole family, friends and the rest of you guys out there reading this blog too. You touch my life and give me the strength, love and laughter, hugs and kisses to get me through the rough patches. I have a box for all the "Well Wishes and Prayers" which I asked Marie to decorate as my "HOPE" box. I'll try to incorporate all the drawings I was given by the little ones onto it.

Back to the SOB. They had ordered a CxR (chest X-ray, you're all going to be up-to-date on hospital jargon when I'm through with you) to rule out any fluid in my lungs. I was told that if there was enough fluid that I'd have to be admitted today and will most likely get my lungs drained in IR (interventional radiology) to rule out cancer cells in the fluid. Again I was thinking, "I don't have any clean underwear for tomorrow & toiletries with me", "Does Marie have enough money for the vet?", and "I'm getting hungry again, the last time I ate was 9am, it's only 11am, but they'd have to keep me NPO (nothing by mouth) for several more hours. NOOOOO!" I teasingly rapped on the doctor with my flimsy papers and said, "When are you going to give me GOOD news?" Back in the day I'm sure I'd be in trouble for rapping a doc with flimsy papers like Ruth Buzzy, but after working with doctors over 17 years, if you can't joke with them, than they're stuffy. You need to break up the bad with the funny, it's what keep you in the field a long time. They already told me that I'm family there so maybe he's like my brother? Would that make it okay?

We got my orders, walked back to the first building via the bridge system to their X-ray dept. This is a cool clinic with on site labs, pharmacy and radiology, very convenient for the patient. You don't have to go back to the main hospital for this. They do need a cafeteria or vending machines though. Got my films done in 15 minutes, went back to the onc clinic to wait for the reading and the labs. Within a few more minutes I was back in the chemo infusion room with my family and I was told the "good" news. I did have a small amount of fluid in the L lung and an even smaller amount in my R lung. I need to get my butt off my back some more, take deep breaths and hopefully cough that crap out. In other words, I was good enough to get my chemo. Yeah! Let's break this baby up some more & make me feel better. I also learned that HEPARIN can cause a drop in platelets in some patients. I happen to be one of them which is good to know for future infusions, so just sterile saline flushes for me. Which will hopefully mean no abnormal labs and no missed chemo doses.

I had a roomate, reassuring that I'm not going through cancer alone. We were able to eat after receiving my anti-nausea meds. I did get the liter of saline followed by the Gemzar, then Cisplatin. We watched "Barbershop" again at the request of my fellow cancer warrior. I had to measure my urine output into the fancy collection chamber which isn't so bad, but my dance partner, the IV pole had 3 wheels on it and it kept wanting to fall this way or that. I'd prefer a more stable one with more wheels, like an octopus, no way is that baby going to tilt over. The Compazine was taking it's toll and I was getting sleepy but still needed to make my donations. We joked that the recliners should have a bucket underneath so we don't have to maneuver with the poles like those dream recliners of big sports fans, coolers in the armrests, etc.. I did get my dream dance partner later on. We were there til closing time, I didn't have to go home but I couldn't stay there, so my onc nurse, Ruth, was able to find me a good IV pole. (I was going to say just "pole" but some of you might have dirty minds.)

Before leaving, we bumped into another UIC doctor who worked with me in the ER. "Hi Ben!" I hate when the face is familiar and the name is on the tip of your tongue but it won't reach your brain until that person is gone. I remembered it by the time we got to the car. "Ya Big Dummy!" said in the true words of Fred Sanford. He told me that some of those studies were done on men in their 60's so I have a good chance with being 40 y/o on my side. We had just arrived home safely, with no urine emergenies. I had received 2 liters of fluids, a half liter of fluid, drank an iced tea, water out of my Team Jacob thermos and soup.

Our neighbor was visiting from Arizona to help out with her mom for a few days. Cathy & I went over to see her for a bit. Then Paul, our bro, brought me downtown to see more relatives visiting from California. Her two brothers from Illinois, husband and daughter joined us. They had sent me a gorgeous quilt with butterflies and an inspiring message to take to my therapies. We met @ Lou Malnati's on Wells St. For those of you who haven't been here & want to try a pizza that is favored by Chicagoans & visitors alike. That's one thing about Chi-town. There's so many uniquely flavored pizzarias, you can eat for a week or two from different places and not get sick of pizza. Well, maybe after the first week you will. I got my calls from Mother Hens One and Two while @ the restaurant, it was hard to hear from them & I called Two back. One wasn't feeling good, I'll try to reach her tomorrow.

We got back home & Widdo took his meds and ate. Yeah! Please God don't let him have a reaction to the meds overnight. We had already spent a shift @ the hospital and we didn't even get paid. Plus everyone was tired from the long day, I'd have to cab it to the ER vet.

I only hope that our brother, who's family really needs your prayers, gets uplifted and the strength to deal with the hardships they're going through. They say that God doesn't give you more than you can handle. I want him to know that I praise him for doing the best that he's already doing . I hope he feels that he can unload some of his burden with us.

Thank you God for getting us all through another day.

Dr. Seuss dinner

Sunday July 25th, 2010

I went to church with our sister, Cathy. From the gospel, the point was to ask for help and you shall receive the help, something I'm not used to doing. Father mentioned that pride prevents us from asking ie. for directions, which I'm not above doing so. Our sister, Judy, asked if she could look into a cleaning service that caters to cancer patients. I told her that I'd like to try to clean up the house before they come which would defeat the purpose of them coming over. I don't mind if family helps but even my friends had offered. Maybe I don't want them knowing what a little piggy I am, but with family, we grew up together, 24/7 for how many years. They know you inside & out & all your good & bad habits. Have you ever felt that it's always easier to clean up someone else's mess than your own? I'll have to break down one of these days and say, "Yes, I need help with my home."

We arrived home and received a call from our brother. Please pray for him and his family, they're going through a REALLY hard time right now and need your well wishes.

The rest of the day was pretty non-eventful. Our brother, Dave, helped me with my laundry. He showed me how to use their washer then moved the clothes from the washer to the dryer & lugged it upstairs for me. I folded it and organized my duffelbag. I'm trying not to have everything all over the place @ dad's.

Later Paul came by & brought lunch & groceries for dinner. We had ham, yams and Hamm's beer. Don't worry, I didn't have the beer. I asked him if he had planned to serve the Hamm's with the ham, ie. pairing wine with dinner. He said it was just left over from the wrestling pay-per-view.

Our sister, Jenny, told me how she had read my blog and brought it up to dad about possible funeral arrangements, should that time come, and she said he's already looking into it. I don't want to plan this stuff but it's nice having a say in what I'd like to happen. Like I'd know if it was carried out or not. I have pallbearers in mind, I want to ask them if they wouldn't mind doing me the honor but I don't think they want to hear it just yet. I wish I could be asking them to stand up in my wedding instead. Sorry for being morbid.

One request, I'd like my deceased cat, Sid (Viscious, aka Muffin), to be buried with me, there's no need to put the others down so they can join me for those of you who tease me about having too many pets, you know who you are. When their times come, I wouldn't mind them joining me. F.Y.I. Sid's in my sock drawer. Anyone who knew her knew how much she liked pulling socks out of my laundry into the living room and meow awkwardly and loudly like she just killed it. If she didn't find a sock she'd embarrass me and pull out my underwear. She did find a necklace that Cathy's mother-in-law gave her that she had misplaced. She was also Coye's cat too so if he wants her, he can, otherwise I'll take her with me.

She was a special cat. Coye and I had found her @ St. Edward's Church. She was a calico cat. She had walked up & down the aisles like she owned the place. She was booted out by the ushers and we petted her when we were leaving mass. She led us the way home, several blocks away. Coye only carried her across ONE street. When it came to our block, she went up our driveway & sat on our front step. Our mom drove us back to the church in case she belonged to anyone. Sid dug a hole in the church lawn, took a dump, came back to the car & wiped her butt on my light blue polyester pants (that's how long ago it was, not last week). Our mom said, "I guess she's ours." Little did we know, she was pregnant and malnourished. Our vet said that if she had the babies, she might die. So the good Catholics that we are gave her an abortion and she lived quite a few years.

Jenny had originally named her Muffin being that Strawberry Shortcake had come out for the first time but we soon realized how viscious she was, she was a street cat that we took in. She was such a tough lady that when tumors appeared on her tail, the vet called us to help him hold her, I guess she fought him & it took a few doses to knock her out. She went down growling & hissing and she had her tail amputated. A few years later she eventually became thin and blind but she carried on. In her last days I kept asking her to die @ home. I'd fall asleep on the couch with her on the floor next to me, when I'd wake up, that darn cat was all the way in the kitchen. UGH! Then dad woke me one morning saying, "Your brother made an appt. to have her put to sleep." I told him that I'd do it. I walked slowly with her, like in The Green Mile, to the vet, crying down Lawrence Ave. It took her 2 shots of the "medicine" to stop her little heart & she again went down growling & hissing. I had her cremated with a sock.

Sorry again for being somber but I'll end on a high note. This evening I was going through my e-mail when I came across a note from Sharon, one of my coworkers. I opened it to find a beautiful picture of the evening crew waving "Hi". It made me cry, I miss them dearly. I called them ASAP. Preston said they were going to put in an empty chair for me. Maybe they can photoshop me in. I told them how my sister went on a pub crawl recently and the friends of this soldier serving in Iraq had enlarged a photo of him, just from the shoulders up and they were taking pictures with it in funny poses like he was @ the bars with them. My coworkers know how much I like taking pictures. It was a slow night so they had time to do this. I hope to get well enough to get down there & see them in person.

Saturday, July 24, 2010

Pierogifest

Saturday July 24th, 2010

Another restless night, was it the wicked storm that flooded Chicago, the suburbs & the Ike(aka. the Eisenhower expressway = I-290)? The bad night was cured by our sister who made homemade Malt-O-Meal muffins and decaf coffee. Goody-Goody. I tried taking a nap before our outing, but time was not on my side. The shower did refresh me before we left.

Jenny, Marie, Paul & I headed to Whiting, Indiana for Pierogifest on Indianapolis Blvd. & 119th St. This is the 3rd time this week we were there, remember we had attended our cousin's funeral. It's down the street of the funeral home. They had decorated the birds in the fountain with babushkas and aprons, they had signs for the restrooms saying "P-rogi stations", we came across Miss Paczki, and Paul knew one of the ladies where their attire exaggerates the native Polish & Slovak dress with heavy makeup, their decorated babushkas, aprons and rolling pins. They had made a calendar with different recipes for jello molds & they autographed it for us. We ran into our cousin, Carol, who was working behind the scenes. It's such a small town but our mom's side was so big, everybody knows somebody. They had dancers performing native dances and craft kiosks where we purchased the tabletop versions of cornhole, that bean bag toss game and T-shirts honoring our heritage and the festival.

It was 90 degrees plus and sunny outside but it didn't stop us from eating sauerkraut, potato, beef & cheese pierogis, potato pancakes, stuffed cabbage rolls, funnel cake w/ ice cream & chocolate sauce. F.Y.I. certain chemotherapies make you more sensitive to the sun, so wear sunscreen 30 SPF or higher or cover yourself with a long sleeved top & hat. My sister had sprayed me down before we had hit the festival. On the way home we stopped @ Dairy Queen and got ice cream cones. We had bought Kettle popcorn for home too. 4 little piggies. BURP! We reached home and my brother started to make tacos for dinner. Even I had to rest my belly for a few hours before I ate 2 of them. Loading up on my calories before my next round of chemo. Lord thank you for the good food, good weather and spending it with wonderful people.

Faith

Friday July 23, 2010

An old friend from my past came by to see me. She used to live across the street. We were friends since we were little through high school & then in college our lives grew apart for some reason or another. Then her family had moved to the suburbs. Since she had moved away she had gotten married, had 3 children and had become a Christian. We had grown up Catholic together. We met each other a few years ago when her grandma died and again when our brother died.

During our visit, I learned a bit about her religion which is similar to my Catholic beliefs but some things that were brought up I had questions about. Like why she hasn't worn pants in the past several years. She mentioned that there were studies about pants but didn't go into details. They believe you go to Hell if you have any sin, no matter how small it is and that you can be saved if you confess. I told her that I believe in the Sacraments that we partook in grammar school and that included Confession. I told her that my faith in my religion is still strong. I may not have gone to church every Sunday but I say my prayers and before I go to bed, I usually Thank Him for the good day that I had. She had shown me Bible passages then had asked me if I wanted to continue to pray or if I wanted to socialize. I responded that I would read the materials that she gave me and but I'd prefer to socialize.

Then we reminisced, talked about how the neighborhood changed, what's new in our lives and she apologized for what she may have done in the past that might have hurt me. I told her that was the past & I had forgiven and forgotten that a while ago. We then went down Memory Lane, literally, back to the Hot Dog Stand (aka. the Maggot Wagon). It's located on Lawrence Ave. between Elston & Cicero. It's been there since we were little. Now they ask if you want plain or poppyseed buns, they didn't have that option in the 70's but they still have their tamales. I knew she had to leave soon so I called up Mother Hen One, she used to live next door & we all knew each other growing up, so they got to speak with each other for a few minutes.

Her mom was downtown with my friend's 2 youngest children. They made a quick trip to the house to see my brother & I. We showed her children where they used to live in the apt. across the street. We told them how their grandma had this big burgundy boat car, a Delta 88, that all the birds in the neighborhood used as a dumping ground. Once the car was so covered in bird poop, we went to a gas station, the attendants laughed so hard they asked her mom, "You're getting a car wash, right?" Just to spite them she said, "No!" You had to be careful when you opened the door & try not touching a dry sample. Her mom used to drive half of my family to grammar school. One time when the car was full of kids, another neighbor, who never locked up her dogs, crossed in front of the car, her dogs followed & we ran one of them over. That lady had the nerve to yell @ my friend's mom. If her dogs were locked up, that wouldn't have happened and the female dog wouldn't get pregnant every few months. She was the tramp of the dog world in our neighborhood. Before they left her mom told me she wants to see me again for a longer period of time. I agreed, I said, "See me now while I'm still here."

The hot 90+ degree weather turned gray & cloudy which turned to rain, thunder & lightning in the evening. I ended up watching The Boy in the Striped Pajamas with my niece. It's a powerful and sad movie. I recommend it. Then I watched the 1st episode of Dexter. The killer of serial killers. It's intriguing and I'd like to see more.

I just wish I could sleep better. I'm still tossing & turning, trying to find a comfortable position, my feet get hot then cold, I'm moving from the bedroom with the fan to the living room recliner with the air conditioning then back again. I finally had to put my dogs on the floor, they're hot. The tumor isn't settling well in my abdomen, my hunger kicks in, AHHHH!

Friday, July 23, 2010

Shared pain

Thursday July 22nd, 2010

Sorry yesterday's blog is misdated. This computer I'm working on is a day ahead for some reason.

Thursday started out nice. My Cali friend, Sue, came by and took Marie, my niece, & I to I-HOP for brunch. She ordered the pancake where they make a face on it with straberries & bananas. Of course I took a picture of it. It was cute & yummy. Then she dropped us off to go have ice cream with her parents.

I then read the latest e-mail on our sister-in-law by our brother. He said she was doing a little better. I called her, she sounded very weak and sad. I asked her if she wouldn't mind us visiting and if she needed anything. She took a long time to ponder what she needed or wanted. We were glad to get it for her. We got her the socks and the bagel & cream cheese she requested along with some other goodies. I lent her the book, "Why?". I hadn't had a chance to read it yet but I think she needs it more than I do @ this point. We told her nurse how we're the sisters-in-law in pain with our respective diseases. I asked her if she was able to speak to the priest yet & suggested she get in touch with support groups to see how others with MS deal with their exacerbations and diagnosis. When we were leaving, I held her tight & I reminded her that she's a part of our family and that we're all here for her and not to hesitate to call upon us, & that somehow we'll get through this together.

Marie had dropped me off @ Sue's brother's home where they were celebrating their dad's 84th birthday. By the way, it was the 3rd time Marie drove on the expressway & did fine. We had a nice dinner and I saw more of Sue's family members that I hadn't seen in years. We sang the "Cha-cha-cha Happy Birthday" song while the grandkids helped blow out the candles. I gave him a music box with "Faith, Family & Friends" on the cover that played, "You Light Up My Life" by Debbie Boone. It's a beautiful song, Debbie's One Hit Wonder. Later when I was picked up by my niece and sister, they had brought the neighbor's three kids which they were babysitting. Now there's six kids of similar ages that took to each other right away and ran off upstairs. Next thing you hear is banging, "What the heck was that?" I wish they had come by earlier, they could've played longer.

My special friend had called & came by to visit. He had attended a wake earlier in the evening for his coworker, a CPD officer who was gunned down in front of his own home 2 weeks before retirement. Not fair & not right. I was glad to see my S.F., it had been a while since we last saw each other. We were still watching the neighbor's kids. My back was hurting so I laid on the couch & rested my head on my friend's leg while he rested his hand on my tumor. I wish he could take it away. The Band Hero was set up and the kids were playing and singing, my special friend too. You really appreciate the little ones, seeing how they get along, laughing and singing knowing that life does go on, they're the future, giving hope that there's still happiness, innocence and good in this world.

Wednesday, July 21, 2010

Calling all angels!

Wednesday July 22nd, 2010

Today was a decent day, went shopping with dad @ Kmart trying to find clothes to fit my belly without making me look too pregnant when I'm not. Should I use the pregnancy parking spots closer to the door? It's technically a growth of some sort, just not the one I wanted. Ah, we didn't use that parking anyway and I got some exercise by walking. I also tried to find a bra. Since losing back fat and boob fat, I have no idea what size I am. No Joyce, I think I'm still bigger than you, I hope. :o) I tried an exercise bra and a regular bra with comfortable looking straps. Remember, I have this portacath thing inside the right side of my chest that hurts if it's moved the wrong way. I think it had dissolvable sutures to keep in place. Don't think they've quite dissolved yet. Then I've got the CA right below the rib cage, it doesn't like any kind of pressure. I guess I'll be flapjacking in the wind. I did get a few colored dego/wife-beater undershirts and some cotton camisoles with the built in bar, I mean bra. Our niece, as she started to develop, I had bought her a top with the built in bra and a tag on it saying so. When she opened her gift she was excited and read the tag out loud but had read it as, "A built in BAR" Our brother, Paul, said that he'll take a shirt like that too. Cami's aren't very supportive but they'll do.

After dinner, dad was kind enough to take me home to hang with my kitties. I had brought the dogs along, it's been about 2 weeks since they last saw each other. I had all 3 cats in my bedroom and I got them purring again apologizing for not being there as often as I'd like. I want to see them more before I get laid out again from my 2nd round come Monday. I gathered more stuff to go through so it'll be less guess work if anyone should have to do it for me down the line.

The reason I entitled this "Calling All Angels" is that our sister-in-law had to be readmitted to the hospital on Monday. She was still feeling good, told my brother to go to work and dropped him off @ the airport. 4 hours later she came down with severe pain, pain she's never experienced before. Luckily her neighbor was home & got her back to the hospital. Our brother was trapped in another state with severe weather conditions and had to wait it out before he was able to get back home. Her pain was not relieved with the steroids that seemed to work for her the last time nor with the pain meds that they gave her. She was told that upon her MRI, they found a spot on her liver and needs another MRI. My brother informed me that she has an uncle with multiple myeloma too. She's having a hard time with this, and she sent our brother & her daughter home. He's really having a hard time with this too. I told him that he can come to us at anytime with the kids. Marie said that she'll do her best to be there for her cousins. it's hard for them to open up sometimes. I'm doing well enough right now so if you can divert some of your love and prayers to them that'd be awesome. They need it more than I. I hope she'll welcome visitors again sometime soon. Heck, I'll see if we can barge my way in to see her. I'll use my "cancer card" to see her and hopefully we can get them through this awful episode. Sisters in pain.

Speaking of pain, I saw Rocky III today with Mr. T as Clubber Lang. They interviewed him before his last battle with Rocky and reporters asked him, "Do you have any predictions about the fight?" Clubber's response was, "Prediction?...he looked into the camera and said snidely & slowly, "PAAAAINNN!" He also used his, "I pity the fool" line in the movie. I thought he just used that in the A-Team.

Thanks again if you can help my bro & his family in their time of need too.

Sad tears/ Happy Tears

Tuesday July 20th, 2010

This morning started off with the funeral of our mom's cousin in Whiting, Ind. I wish family could always get together for happy times but that's not always the case. Some cousins called me a "stinker" for coming all the way out there. I told them that after, what I found out, was a Monsignor who had blessed me the night before, I had slept well and had energy that morning. We found out that our cousin Paul was in the army and they gave him a military send off with the American flag draped over his casket and they played Taps on a bugle. Then they folded the flag and gave it to his wife. One cousin mentioned that each fold of the flag represents something, she had a copy of what it meant but was unable to find it. That'd be nice to know the symbolism behind it. We also found out that he's in the same cemetery as his parents, and in the same row as our uncle, aunt and our grandparents. It seems our family may dominate that section of the cemetery, his sister said that her & her husband's plots are in the same row as well. Before we left for the reception, my dad, brother, Paul, our Aunt Helen and I drove across the street to visit our mom, brother & the grandparents on our mother's side. We also found out who put the glass Virgin Mary candle holder in the tree by our mom & brother. It was Aunt Helen. She said that she placed it in the nook of the tree years ago and slowly over the years, the hole is closing up around it. Pretty cool.

It got me thinking (uh, oh). I know I'm working on getting my papers set "just in case" but should I also start thinking of that part of my life as well? I think we have another plot near our mom & brother, I thought it'd be for dad but I think he wants to be cremated and said he wants to be put in the Mississippi so his ashes could flow to the Gulf and around the world. When do I bring up this topic with my family? I want to set a certain amount aside and make some arrangements so no one's scrambling at the last minute and paying for this big expense. I'm already thinking about the readings and songs for my mass. I remember when our brother died that we had certain ones to choose from.

The reception was nice. We arrived a little later because of our stop off. Aunt Helen and I let everyone else go ahead in the food line, but by the time we got there, they ran out of the sauerkraut. Drat. Actually my bro, Paul, got the last scoop. At least I didn't have to worry about potential tummy problems on the way home. He saved me. It's nice to see the family come together. We're all promising to do our best to be @ the family reunion next month and some are making plans for Whiting's Pierogi Fest this weekend.

We got home and we took naps. Our friend, Sue, and her parents had arranged a gathering @ their home later that night. It was very nice. Gulliver's pizza was the main dish. If you hadn't had it, you should. I believe it's their pan pizza, any kind is the best. My high school junior prom date and Mother Hen One's first cousin, Darwin, was a surprise guest. Sue's brother was there and we finally got to meet his daughter for the first time. She's a beautiful blend of both mom & dad. His oldest son takes after him and his younger son reminds me of their mom. Our other friends arrived with their children and the kids hit it off right away. It was awesome. Some friends hadn't seen each other in about 15 years. These are the good memories I have to pull out when I'm having bad days and need a "pick me up". I really have to develop my pictures some day before my 2nd chemo dose. At least I can put an album together while laying out on the couch and my legs are feeling heavy. I wish we could laughter, hugs and kisses in a pouch and pull them out as needed.

Thank you God for another beautiful day.

Monday, July 19, 2010

"Wax on, wax off" RIIIIIIP!

Monday July 19th, 2010

I had labs checked today hoping if they were good, that I could get the chemo dose I missed last week. I snacked around 4:30 am on Rice Krispies, blueberries, a bit of sugar & milk. When I got my results back my glucose was only 104 mg/dl (normal) instead of running in the 200's. I was usually eating closer to my appt. time. My platelets also went back to normal but I was informed that my 2nd dose of Gem/Cis chemo combo will most likely be this coming Monday and that this was to be my "week off" anyway.

These darn facial hairs had not fallen out but kept growing so I'm hoping this is a sign that I will not lose my hair but it does mean that I still have to shave my legs, pits & go for facial waxes. OUCH! Is the waxing pain worse than the cancer pain? They're about equal. How do I know? I let my niece drive me to get it done today so I don't look like the Geico Cavemen and was quickly reminded of it as soon as that first strip was ripped off. Since my labs were better I didn't have to worry about potentially bleeding, ya never know how much skin could come off on that waxy cloth. Would I bleed out from the mustache wax? That'd be embarrassing. FYI, this is the 3rd time out driving with my niece and she gets better every time.

I had a great friend who flew in from Cali today for her dad's b-day as well as to visit me. God I miss her. Welcome back my eating buddy. I wish I could keep up with her like back in the day but thank goodness she does not have what I have. This cancer is like kryptonite to my Superman. Anyone who knows me knows how much I like food and used to put it away until THIS. It got me where it counts, in the belly region limiting my intake, but I still eat knowing the pain it will cause later. Is that what "a glutton for punishment" means? I'm glad I found a solution to it by lying on my back until it subsides and to eat several small meals a day instead of 3 large ones. Back to my Cali friend, she hasn't lost her touch, maybe she'll take one for the Gipper (me) & carry on the tradition. I hope to heal enough to do it on my own. She really brightened my day and soon Mother Hen One, she knows who she is, and her daughter joined us. We'll be having another gathering tomorrow with Mother Hen Two, she knows who she is as well, and some other friends. Take advantage of the more energetic times.

Bad things just keep coming. I got more news today of an aunt of some great friends that had to be taken to the hospital. Please pray for them. So much going on in a short period of time. When times get rough, people come together.

Later this evening my family went to Whiting, Ind. for our mom's cousin's wake. It was nice to see family, just wishing it was for another occassion. I was told that he had seen a doctor a few days prior and was told he was fine to go home. Wait! I was told the same thing by my health professional today, YIKES! Our gentle cousin had a great long life, loving wife, children and grandchildren. Our family is big, we may be in different states but that doesn't stop us from being there for each other. You learn so many amazing things about a person, unfortunately, at wakes. You learn about their accomplishments, the lives they've touched, etc. We heard his passing was even mentioned by the White Sox announcer, Hawk (is it Carlson ?, I'm a Cubbie fan by birth, Northside!) during the 4th inning of Friday's game.

The priest @ the funeral home was kind enough to bless me before I left. When he finished his blessing he shoved his hand that was resting on my forehead, into my forehead, kind of like that "And I say Yay!" preacher from the 70's or 80's, then the people would fall out & be healed. I hope his hand didn't get too oily, my five fingered forehead* is known to be shiny.

ATTENTION TO ANYONE WHO'S SQUABBLING OVER SILLY STUFF IN THE PAST, LEAVE IT IN THE PAST, FORGIVE EACH OTHER AND BE FAMILY/FRIENDS AGAIN. LIFE IS TOO SHORT TO HOLD GRUDGES. Unless if it's really something serious then can you at least think about forgiveness. Maybe? :o) No one is perfect. Life has too many burdens to bear, lighten your loads, and I hope to practice what I'm preaching.

* My "Five fingered forehead" title was given to me by one of my patients years ago. I know it's big but I'm hoping it means I have a lot of wisdom, like Hera, Zeus's wife. Don't know where I heard or read that tidbit. Goodnight everyone. :o)

Sunday, July 18, 2010

On the slow track back to a normal life?

Sunday July 18th, 2010


Sorry I haven't kept up this blog on a daily basis. I was catching up on other things, as small as the task may be, ie. writing "Thank You" cards for all the well wishes and prayers that lift my spirits, took some time. This pain, shortness of breath & cough limits me from sitting for long periodsof time and it's hard to write lying flat on my back. The vertigo that had hit me earlier this week slowly waned. Yesterday was the 1st day this week I was able to shower and feel stable while standing = I didn't have to use my shower chair. 2 nights ago I was also able to sleep on my left side and not have any pain or shortness of breath, it was a good night. I hadn't slept on my side, either side, in over a month which is very hard for a person who normally boogies in her sleep.

My energy level is slowly on the rise, I was able to take the dogs in the yard, going up and down the stairs, loaded the dishwasher, again, simple things we take for granted. I'm able to stay alert for longer periods of time too. YEAH!

This weekend had so much was going on. Our mom's cousin passed away in Indiana, our sister-in-law had a multiple sclerosis exacerbation (meaning flare up & f.y.i. she's doing better :o)), my goddaughter had her 1st birthday, and some good family friends had 2 graduations going on. My gut gives me grief (pain) when driving over potholes, speed bumps, etc., and I wasn't quite sure before the shower how my vertigo was going to treat me, so I stayed home and missed out on most of those events, not wanting to fall out and be huffing, puffing, coughing & being unable to lay down when the pain kicks in."Hey lady, what're you doing on the floor?" Some events were out in the suburbs too. I figure that if I have to go on a long car ride that I'd save my belly-bumping pain for the funeral.

This weekend turned out nice. Quite a few friends and my siblings came over the past few days. From watching "Forgetting Sarah Marshall", a very adult themed movie but pretty funny, to getting great advice on comfortable clothing that might fit my new uncomfortable shape, attending mass and playing with our nieces and my goddaughter. Oh I wish I could just hold her like I used to, let her fall asleep in my arms, hug her tightly on my lap, and squeeze her, but this painful lumpage prevents all that so I snuggle her while she's in another's arm and make weird noises on her neck. I hope she gets used to the purple sock monkey and not fear my dogs after today. The best was when our aunt called from the Philippines and have me tell my family to stop drinking alcohol (during the wrestling pay-per-view) but I was informed that on their recent trip there, they had provided my family with it. Hmmmn. I told her that they'd probably do it if she got a hearing aid. I don't think she heard that. Thanks to all who came to brighten my days.

Thursday, July 15, 2010

No chemo today

Thursday July 15th, 2010

My brother, David, and dad came with me to my oncology appt. today. I had my labs drawn, then my vitals signs taken. I was tachycardic, my heart rate was fast, 130 bpm (beats per minute) while standing but my blood pressure was fine. My tympanic (ear) temp. was a little elevated but they rechecked it orally and it was 98.1. Then we went into the room and I was told that my platelets were too low to receive chemo today. I still have a slightly elevated white blood cell count and glucose but it's been that way since all this started. The nurse practitioner, Vera, came to speak with and examine me. She added more labs to the ones I had drawn and consulted GI if I'd need any further testing ie. a CT or ultrasound.
After having a good day you wouldn't believe the night I had. I told her that last night I couldn't sleep at all because I had really bad abdominal pain and could not get comfortable. I had felt hungry but the multiple midnight snacks didn't help. I also had a really bad headache but I'm trying to blame that on the changes in the barometric pressure and the ringing in my ears. I feel that my ears are congested at times. I also had some slight bleeding in my R nostril on tissue but I sleep with a fan in my room & it's on the right side of the bed. I had finally fallen asleep around 5 am and when I woke up, I was sweating, but not profusely. Not to gross you out, but I had been "gassy" yet again and I'm blaming that on the onions that came in the Chinese food we had last night. I'm "moving" from below too. I'll see if the Colace will ease in that department. I mentioned that it feels like my insides are "hanging down" on the right side of my abdomen. Vera stated that tumors aren't supported by anything and other cancer patients had mentioned that sensation.
While we waited for more labs to come back, David & I watched Barbershop on VHS. I got to sit in the big comfy reclining chair which was provided. Vera came back and mentioned that tumors can "sludge" and block ducts but that I wasn't jaundiced and overall, I looked pretty good. She said that I looked too good to admit and that I can hydrate myself at home. The labs that they added on were good, my kidney function, my hemoglobin, my bilirubin, and pancreatic enzymes. She mentioned that the ultrasound wouldn't show much and that she didn't want to expose me to more radiation and IV contrast with the CT. She said that if I was to be admitted that they'd just watch me. I did get a thermometer and was told to call back for any fevers, chills, severe pain, etc..
I did go to the VA to see my coworkers and to show my dad & David where I work, the triage area and the ER. I was so happy to see them and hug them but I also felt very dizzy and held my ground, walking with a wide stance, I felt I was wavering @ times. Was it the vertigo? Things were a little swirly and luckily I didn't pass out. That'd be fun to be a pt. in my own ER and I hadn't had a chance to shave my legs that morning. EWW!
We made it up to Human Resources but they were at lunch. So we wandered down to the humid cafeteria where the ice machine was broken. I ran into more coworkers along the way & introduced them to my family all the while holding my stance and trying not to pass out. Was I hungry? I had just eaten a banana on the way to the VA from UIC. Anyway, I grabbed the first table while dad & Dave got our grub. I did feel better after eating half a sandwich and cold water.
Maybe it was the vertigo, I did have the ear congestion & ringing all night. We made it back to HR on the 2nd floor and Sandra, the lady who took care of me, was very sweet & compassionate. She recently was diagnosed with breast cancer and she understood where I was coming from and was very helpful with my beneficiary paperwork. She also gave me words of encouragement and said if I need to talk to come up and see her. We wished each other well, as my cousin with breast cancer says, on our "new journey".
I hobbled on back to the car in a better state having those worries off my mind. I couldn't wait to get home and once I did, had a good, deep 2 hour nap. Later Gabe & Lisa called to see if I could come out for a bit, I really thought about it but Marie, my niece and guardian, reminded me how weak I was earlier in the day and to rest up. As tantelizing as the offer was, I told him to have a strawberry margarita for me. Marie's pretty wise, I'll never forget the time she, her mom & I were in N.Y. during a heat wave, quite a few years ago. She was the smart one telling us to get a cab to Central Park instead of walking and to get ice cream while we meandered the grounds. I'm glad we listened to her then and now. I can barely get my butt off the couch half the time. Plus I'd hate to pass out in public, if I did, I hope to have shaved my legs by then. :o)

Driving instructor

Wednesday July 14, 2010

I was having a pretty decent day, some lower rib/abdominal pain and some shortness of breath but enough energy to shower in the early afternoon. My niece is learning how to drive and needs practice. She was also going through a rough day due to boyfriend issues. I decided to get her & myself out the house for a while.
My car is 12 years old & I had warned her how the brakes need more pressure to stop, she adjusted the mirrors & seat, & I placed my seatbelt, lap band only, because I have pain in my right portacath area.
Our first stop was McDonald's drive thru. Me being the half-Asian auntie with a camera, I got several pictures of her at the different windows and finally with our bounty, a hot fudge sundae & a hot caramel sundae, no nuts. She parked and she was able to open up to me. We had a nice talk and she stated that she appreciated me taking her, it took her mind off her problems.
We were able to get to my house & she backed into my garage, something even her mom said she hasn't done yet.
We played with the cats and again they were biting her and I. I miss those babies, if only my family wasn't allergic to them.
We made a stop @ the Walgreen's where my sister works at. It was nice to see her coworkers, especially the ones that keep me company while I do my pictures @ the kiosk. I told them that I have to have a date with the photo kiosk soon. I told them how Cathy used to help take care of us younger ones back in the day and here she is, doing it again. They told me to hang in there, kiddo.
On the way back to my dad's we might have gotten a ticket. We were @ the intersection, the light was greenish-yellow when my niece crept into the intersection, but lo' and behold, the traffic ahead of us stopped and the light turned red with us stuck in there. Oh well. I was on my phone but not driving and not wearing the seatbelt the way I should and since she's on a permit, it'd come to me. There's a first for everything.
We made it to dad's safely and she was able to park my bird poop covered car in front of the house. There's so many trees in the neighborhood, it makes the hood look pretty but the cars suffer. It keeps dad busy, the slightest smudge of white/black avian feces and he's out there with the Windex & papertowel.
It was a pretty decent day. :o)

Wednesday, July 14, 2010

SLEEP!

Tuesday July 13th, 2010

That's all my body wanted to do today, besides eat & use the "comfort room" as Filipinos call it. I was just dragging and was laying around the house, even though my niece's friend came by, I couldn't stay awake if you paid me. Is this the tiredness I've heard so much about? I hate to waste a beautiful day but I did.
I'm lucky I made it around the inside of the house without falling out. I tried to shower earlier in the day but I didn't feel like I'd be able to stay awake or alert enough to do so. Throw in the back pain which felt like I had a hard work out with aching muscles even though I hadn't worked out. Add the rib/abdominal pain to my shortness of breath and cough and you can see why I just wanted to lie there. My pain gets better when I lie on my back. No wonder they say people have to worry about blood clots while on chemo, you just want to lay around.
I called my sister, Cathy, who was able to get me a chair for the shower. I finally was able to get myself in there around 7 pm. I tell my family that I'll be bathing and I keep the door unlocked in case they hear a "thud". The chair came in handy, so does having a showerhead that's on a hose. I'm glad I was able to bathe, it really did perk me up after that and I was awake for the next couple of hours. I wish our brother, John, were here so I can ask him how he got through his chemo days. If he got through them, so can I. He was a tough cookie and barely complained, unlike me and I have modern technology to broadcast my rants too. :o)
It's hard to believe that a bath can be such a task. Again, it's very frustrating not being able to do the simple things in life for yourself and if you do it takes a whole day to do so. Having these different pains throughout one's body can be very annoying, just when you think you feel decent, one pain or another creeps in or they gang up on you all @ once. That's why, believe it or not, I look forward to my chemo days, hoping to get some relief.
Maybe it's a good thing I hadn't had children or moved further from home. I can't imagine how much harder this would be all around, emotionally, financially, etc.. The director of my ER called me today and asked me what I'd like to do to help the veterans. He's up to something but wouldn't be specific. I replied that for those with cancer if they're able to get home help or even transportation to & from their sessions. A lot of people don't have the support and resources that I do. I'm hoping some good comes of this cholangio carcinoma, awareness and helping others somewhere along the way.

Tuesday, July 13, 2010

Bloated

Monday July 12th 2010
What did I eat? Was it the garlic from the chicken that I had yesterday & the leftovers for breakfast? All day I felt like Charley & his grandpa from the Chocolate Factory after drinking those fizzy drinks, however I was not floating around. It really put pressure on my insides & I felt a lot of pain and short of breath. Not to gross people out, but thank goodness, bad things do pass. UGH!
I had repeat labs today to check my electrolytes & kidney function which were still good = no replacement fluids. Now I have the day to take care of other things.
I had taken some time to go and spend time with my kitties, we fell asleep next to each other. We really missed each other, they couldn't stop biting me while purring. They kept brushing against my legs while doing laundry and wouldn't stop running across my lap while trying to watch t.v. Thank you Aunt Cathy for keeping an eye on them for me.
My special friend had come by to help me fix my annoying garage door, yet again & other chores. If only I could win the lottery and have enough money to get a new rat-free garage, pay 4 these medical bills that I have yet to receive & then some. I wish I had the strength and breath and no pain in my lower rib region to continue doing things for myself. I feel like I'm burdening others with simple things I used to do.
One last thing, why are my cheeks (on my face) tender? I noticed it before I was going to bed and was washing my face. I guess it's just more random discomfort to look forward to. Woo-hoo.

Monday, July 12, 2010

A 2nd healing

Sunday July 11th, 2010

I was told by several close friends, neighbors, and coworkers about another healer, Emma de Guzman who would be @ The Felician College chapel today. Joy came to get me. We had gotten there in time but it was so crowded by then, we had to wait outside, there were already 300 people inside and a line forming quickly behind us. We did catch a glimpse of Emma as she arrived and was escorted passed us to go inside.
With patience and luckily being the 1st in line, I was able to get in, but Joy had to wait outside. They had said that everyone would be blessed after the mass which still didn't appease others who wanted to be inside and were loudly protesting.
Mass was spoken in Tagalog as well as in English. When mass had ended, Emma came to the pulpit and told us how she was called to do God's healing. She said that the healing will come when we are @ peace. Then she proceeded to pray & touch everyone, I mean everyone, 300 plus. She kept her smile as she listened to the ailments and prayed that we may heal so we may continue to do God's work down here. That's my goal, I want to continue doing my nursing job & take care of my family, friends, pets & home.
I felt kind of bad, some of my coworkers had bumped me in line to be seen by Emma sooner than I should have but as another friend had mentioned, the same thing happened @ Peter's house where they tore through the roof to get a friend healed.
When Emma approached me, I told her of my cancer. She prayed for the cancer to go, to heal me and so I may continue to do my work. I couldn't look @ her but her voice and her touch were so soft and full of love, I was deeply touched. I thanked her and was escorted out by my coworker.
Joy had been outside and had met up with Odette and her mom. I didn't realize how long I had been inside but they took that time to bond. They had asked how it went, I told them what I experienced and that I was starving. A good sign. The 4 of us had headed over to the Olive Garden @ Lincoln Town Center. I probably shouldn't have eaten as much as I did but a) the company and b) the food was great except for the plastic pieces in our desserts. Even then the plastic didn't stop us from finishing them off. :o) We did get comped from the restaurant for the unexpected goodies in our food.
It was another good day, spending it with good friends, and sharing it with others with different ailments all coming together under one roof to be together.

Sunday, July 11, 2010

A good day

Saturday July 10th, 2010
I had a good day, I had more energy, still the anti-nausea meds were working, the pain wasn't so bad and & I could breathe easier without coughing. I believe that's my new rating system for a good vs. a bad day.
My brother Paul, sister, Jenny, niece, Marie & I went to visit our mom's cousins in Gary, Indiana, who have a home on the beachfront. We went to celebrate several family member's birthdays & to see the Gary Air Show from their yard. Just a few small sand dunes away walking distance to the beach. If I didn't have this growth in me & if I were in better shape to begin with, I'm sure the trek wouldn't have been so tough. Jenny & I did take breaks on our journey to use them as photo opportunities, "Look @ the pretty path! Smile!" I'm glad I went with her, when we started, I saw a bigger sand dune & suggested we go up it. She used her better judgement not to, if we did, we'd have a lot shorter excursion.
The fresh air, it's gotta be a little fresher than Chicago, feeling the sun on my skin, mixed with the cool breeze, standing in the waters of Lake Michigan, walking through the soft sand, having the roaring planes zoom overhead, so loud you can't even hear yourself scream from the excitement was amazing. The most special moments were sharing it with family and their friends. We shared smiles, tears, hugs, laughter, tons of good food, funny moments when one little girl sneezed all over the birthday cake, watching all the kids run around making sand designs or having one child get watermelon all over himself then rinse it off in the inflatable slide/pool.
When we left I was feeling good. I had planned on going to the Irishfest with my family when we got home but when we got home a nap seemed like a good thing. Too much fresh air & this baby gets tired. A few more phone calls & I had zonked out on the couch with my little doggies. Thank you God for a beautiful moment shared with loved ones. :o)

Friday, July 9, 2010

Be careful how you sleep

Hey gang,
I successfully endured spending the night with a Huber needle in the right side of my chest. That's the big fancy needle they used to access the portacath the day before for my fluids. I found myself almost laying on the R side of my chest a few times, not sure what would happen itf I did but I don't want to find out either. I'm a mover & shaker in my sleep and have even been called the human typewriter by some because I roll over til I bump you, then get pushed back to my side of the bed "Ching!"
Anywho, they wanted to check some electrolytes which the chemo is known to lower, potassium, phosphorus & magnesium. If so, they could give it IV form. They had also planned to hydrate me if needed. Well, I stepped on the scale and went up to 150 lbs from 144 lbs the day before. That indicated that I gained 6 lbs in 1 day and that I didn't require the extra fluids. So now I just had to wait for my labs to come back.
I had a different room this time and got to share it with another pt. & her niece who had brought her in for her treatment. The niece informed me that she's only 41 y/o and is facing her own dilemma of worsening kidney failure, being diabetic, having high blood pressure and raising 2 kids. When you may think you have it bad, others have their share of problems. We agreed that having a great support system will get us through our rough times. Shortly after I had gotten the news that my labs were good except that my glucose (sugar levels) were elevated, however, one of my medications is Dexamethasone, a steroid, which may cause it to rise. I'm on that temporarily because it helps one of the nausea meds work more efficiently. Before I left the other pt's niece & I wished each other well on our health journeys.
My dad is recuperating from laryngitis and a bad cough but dropped me off to my appt. Jenny, my sister, had offered to take me but he said he felt better than yesterday. He was out running errands when I was to come home, so a sweet friend took some time out of his day to get me back home after my appt. I told him that if he got in trouble for being late getting back to his destination, that he could use my cancer card to get him out of trouble. Any favor one does for a cancer pt. or anyone else ailing should be forgiven by a higher-up.
Today a little more pain resurfaced but I'm managing. I'm on enough meds already. I've been having weird sleep cycles and today had gotten up @ 4am because I was hungry. I had eaten a banana & some milk & couldn't go back to sleep. Of course I wanted to sleep when I had to finally get ready for my appt. I thought I could rest when I got home but my Runaway dog had developed a fever, chills and didn't eat breakfast. No appetite is a BIG indicator to get him to the vet ASAP. I had planned on going to see another healer @ Immaculate Conception Church tonight but Widdo Poopie's health scare did me in. Luckily the healer will be at another destination on July 11th. I hope to make it to see her. Widdo's doing better so now I can try to catch a nap to wake up later to go to sleep. :o)

Thursday, July 8, 2010

Peeing like a racehorse

Let's try this again. I was almost done with my 1st day of chemo blog when it high-tailed its way into oblivion.

Thursday July 8th, 2010. I was actually looking forward to getting my chemo. I was always tired, feeling short of breath, had a nagging cough. I had pain in my abdomen going to my back & was especially mad when I could eat only small portions and would get full quicker.
I started out having my portacath checked by the IR nurses to make sure it was healed enough for use. I had the pleasure of having some dressing sticking to the dermabond (a glue-like substance used to close some surgical wounds). It's never a good sight seeing someone come at you with a pair of scissors near your neck & pulling on your skin. Ouch!
My sister, Judy, & I made our way to the oncology clinic from there. They started off by drawing my labs to make sure everything was fine before they could give me the main drugs, Gemzar & Cisplatin.
I was told to drink plenty of fluids before, during and after my treatment because Cisplatin has some harsh side affects on the kidneys. Plus they hydrated me with a liter & a half before starting the chemo. They were also vigilant with the anti-nausea meds. Believe it or not, we were told that if I were an alcoholic & smoker, I'd have a better chance of surviving the "nausea" phase of chemo because those 2 have a better tolerance to nausea, since they've experienced it more.
Of the 3 different anti-nausea meds, Compazine being the guilty party, had made me very sleepy. I fell asleep as the pharmacist tried to explain all the meds I was going to be taking. Thank goodness Judy was there to take that info for me. As soon as I got somewhat comfortable in the bed, all the fluids kept pestering my bladder to get out. So half asleep & on multiple trips to the bathroom, I had to drag my "temporary dance partner" what nurses call the IV pole, back & forth, where I had to pee in the "nun's hat", the receptacle that's easier for ladies to donate their specimens & for the staff to measure. What goes in must come out.
Not only did I get good service from the staff, I recieved plenty of great information of what to expect ie. fatigue and how to cope with it, what other side affects the meds may cause, where to get wigs, how to prepare certain foods during the phase where my immune system may go down, etc.. I'm able to have a few visitors during these sessions, 2 VA coworkers were able to sit with us for a while, which it's great to have someone watch over you during your first experience with the unknown. To be honest, my sister was more nervous about my treatment than I, she was also glad to see how I coped with it and got strength from me. She saw how a positive attitude, humor & sharing my feelings eased her mind in dealing with this.
The best part was when I got home & felt perky and energetic which our Aunt Helen was able to detect in my voice over the phone & it brought her to tears. I felt I could breathe easier & the pain in my back & abdomen subsided. I was able to crank out 4 songs vocally before pushing my luck. My other sister, Cathy, noticed that my nagging cough only occurred twice during our phone conversation. I didn't feel tired and when Jenny washed my hair in the sink again, bending over wasn't as painful as the last time. I was able to sleep in different postitions rather than just on my back & when my dog stepped on the left side of my normally painful abdomen, it didn't bother me. A day of relief was pure Heaven.

Tuesday, July 6, 2010

Hair dilemmas

So far 3 hair problems I've come across:
1) Since getting this portacath placed in the R side of my neck & chest, I've had some pain to the area and realized it hurt to raise my R arm. Unfortunately hair grows in my kili-kili (is that the correct spelling for armpit in Tagalog?) A) Do I let it grow on the one side & start a new trend, B) lift it the best I can & try to shave it or C) Wait for the chemo & pray it falls out?

2) Now I have to sponge bathe (don't get any ideas you naughty-minded people) to keep the area dry for the next several days and it's painful to bend over since my lovely growth is right below my ribcage & then some. It's also painful when I hyperextend my neck back which I found out the hard way watching aerial fireworks on the 4th of July. "OOOh pretty...OUCH!" Jenny & I worked it out where I bent over the basement sink & she was able to wash it for me. My big hair had gnarles in it which she was able to get out. I muddled through the pain & SOB (shortness of breath, not Son of B----) to get it done. I also had to hold a washcloth over the catheter site so it wouldn't get wet. I had thought about going to a salon but then they'd hyperextend my neck back into the sink.

3) Now I've got these stubbly leg hairs and again, bending over is a chore. A) Do I hire someone to shave them, B) do the best I can to continue doing this myself, C) let em grow, braid them & see if the chemo will take care of that for me.

My luck the chemo will take the hair on my head & eye brows but will keep the pit & leg hairs growing. :o)

Monday, July 5, 2010

Healing touch

Today a dear friend and coworker had brought a lady with special gifts of healing and prayer to my home. We had our session which was very powerful and touched my heart. As she was assisting me back to my feet, I was shocked to see my cat, Elston, had made his bed and was sleeping so good in the basket she carries her Blessed Infant Jesus in. I was embarassed and nervous when I pointed it out to her but was relieved to see she had a good laugh about it. Having true faith, believing in miracles and healing, and the power of prayer are things that I talk about but I realize that I really have to internalize and make part of me.

Saturday, July 3, 2010

What a day

Friday July 2nd 2010 was one to remember.
Not only did I get my portacath placed and had a quick, uncaring & rude exit from the nurse in the holding room who never checked my vitals post-procedure (even though I was extremely sleepy, nauseated & dizzy, and I'm not hesitating to report this) I had one of my little Chihuahuas high tail it out of my dad's backyard while I was recuperating from my procedure.
Everyone in the Mayfair area heard of the dog with the unusual name, Widdo Poopie, from the mailman, camp counselors @ Mayfair Park, to store owners, the 16th & 17th police districts, etc.. Marie, my niece had the oddest experience of yelling out his name with a hot dog in her hand trying to woo him home. The hot dog was her mom's suggestion.
I want to thank everyone from my family, friends, to everyone in the Mayfair area who tried to catch him & kept an eye out for him, Faceboook, etc.. I especially want to thank the family that found him & placed their "found" poster @ 7-11 where my sister, Jenny, & her daughter, Marie, were placing their "lost" poster, when they came across it. Bless your big hearts.
I had been so upset with God and had challenged him to "bring it on" earlier in the day when he first went missing, I didn't know how much more I could take in one day. Needless to say I was hysterical when Jenny & Marie arrived home with the information to pick him up. I apologized again to God. Widdo had made it across Lawrence & Elston Aves. and several blocks unscathed.
I didn't not comply with the first line of my discharge instructions. "Go home & rest the entire day." My family started laughing. Eric, part of the search team, before he left asked, "So we'll do this again tomorrow?" I replied, "HELL NO!" just as the answering machine on my neighbor's cell phone clicked in. I had called him to let him know that my dog was safe & those were my first words.
Again, thank you to all who helped me out with my dog and continue to be there for me during this cancer process. As in the book "Crazy, Sexy Cancer", you're my Cancer Angels, the ones who'll get me through this. I love you all.