Sniffle Sniffle

This is what my mom wrote about me on her Light the Night donation page:

"My daughter Sarah was diagnosed with Hodgkins Lymphoma in February of this year when one phone call changed her life. Sarah has been fighting a great fight for the last 7 months and is nearing the end of her treatments with what looks to be a success story. She has sometimes had to take a step backwards to move forward in her treatment which was frightening.
She is not alone in this struggle. Her family, friends and co-workers have been most generous with their time, talents and generosity to her and her family. But I know it still wears heavy on her heart. She has a great husband and 3 wonderful little girls (all under 5) that unknowingly wear her out. Sarah is very brave and selfless most of the time and managed to maintained her great sense of humor 90% of the time. I am very proud her and of the way she is handling this challenge. Sometimes I feel like she is our strength - even though we all try to be hers."

Baths: A Prequel of Sorts

I hate this PICC Line. When I shower, I have to wrap my arm in Glad Press 'N Seal and then I can't bend my left arm. I've only been showering every other day and cleaning myself up with baby wipes on my off days. I'm so worried about infection and getting the area wet could cause infection.

This morning I got up at 6:20 because I had to go to the hospital for labs at 8:00 and another MUGA scan at 9:00. I didn't feel like showering, so I ran a bath. I prided myself on the idea because I could rest my PICC arm on the bathtub and not have to wrap it. The bath itself was fine, but it brought back a very bad memory...

The last bath I took was 2 or 3 days after my biopsy. I couldn't shower because I couldn't get the area wet (armpit) and that would be pretty impossible to keep dry, so I ran a bath. I was home alone with the twins and I didn't think it thru very well. The wound was under my right arm, so I wasn't able to function very well with only my left. I had to ask my babies, who had turned four less than a week before to help me. I had them prep my loofa so it was nice and soapy for me, and then I had them wash my hair. They took turns pouring a pitcher of water over my head, shampoo, rinse, condition, and rinse. They were very gentle and took much care in their work, but I was a mess. I was kneeling in the water, hunched over to make it easy for them, crying my eyes out because I had been reduced to having four-year-olds bathe me in a matter of days. I didn't want to be that person. I didn't want to be a cancer patient.

Now months later, as I sat in the tub this memory came flooding back into my head. I quickly finished up and got out. I don't like taking baths anyway.

I feel....

I can't decide how I feel. I'm super tired and having waves of nausea and little flecks of pain here and there. I can't tell if my symptoms aren't as severe because I had such a long break or because the Adriamycin went in over 72hours or because we dropped the Bleomycin. I just keep waiting for more extreme symptoms like before. On that note, I also don't want to ignore the bad feelings I do have. I want this to be over so bad that sometimes I think I do too much just so I can feel normal. "Normal", like I'll ever feel that again.

Every little symptom and every little pain this time around I find myself worried about infection in my new picc line, take my temperature, and if it's normal I take a nausea pill or a pain pill or nothing depending on the symptom at the time.

Yesterday I remembered Dr. Howard telling me to meet with Dr. Ziaja (Radiation Oncologist) again to make sure she doesn't want to do radiation. I don't know why I have to meet with her - why can't Dr. Howard just call her? Why can't I just call her? At this point I can honestly say that there is no way that I could handle going thru radiation. I've been thru so much; too much already. To even think that I would have to go thru that too makes me...I can't even explain how it makes me feel. Sick to my stomach. Like crying. Frustrated. Angry. Irate. Fuck, fuck, fuck I can't even think of it. So Monday I will call and leave a message for her and see if I can just talk to her on the phone about it, and hope for the best. I know they can't radiate my lung, but the original plan was to radiate everywhere (prior to knowledge of said lung) and that would be 5 days a week for 4-6 weeks. But when I told Dr. Howard I wasn't comfortable with it, she did say that I could have more chemo instead and the cure rate is just a tad lower - like 5% lower. And I ended up having to have the extra 4 (extra 8 since 2 treatments is one cycle), so by count, that's it.

It's so hard to think about because I want to be "cured". I want this to be gone without recurrence so I want to listen to and trust that the doctor's know the best way to get me there. But I'm here to say that my body and my mind just cannot handle much more. I just want my life back now.

Disclaimer: in my saying I've been thru too much I do know and understand that many people deal with worse on a daily basis and I'd like to give them all of my praise. "Too much" is my too much, and no one else's.

Me & My Pump (and other news)

Tomorrow I will be disconnected from my pump and I cannot wait! This thing is such a pain in the ass. It's too heavy to wear around my waist, and when I wear it as a purse it keeps sliding off of my shoulder. I can't shower with it because the tubing isn't long enough to put the sack on the floor and maneuver around so I've been cleaning myself with baby wipes. I smell young and fresh, but feel gross.

My sleep is also deprived as I'm stuck on my back or only slightly to my left side. I'm a stomach sleeper and sometimes will settle for my right side. I'm hoping once the insertion site of the line heals and isn't as sore that sleeping will no longer be a problem, but again the tubing isn't very long and I have to be completely conscious of the sack I carry with me. Nevertheless, I only have to do this two more times.

In other news, because of the line Dr. Howard wants me to start back up on the blood thinners - just to be on the safe side. She wanted me to go back on the Coumadin (pills) and also take a few days of the Arixtra shots. I had two shots left over and took one Tuesday. When I called yesterday to clarify just how many days she wanted me to take the shots, they told me five days and that they would write me a prescription for three more. I asked if they had any samples, explaining that those three shots would cost me a $75 co-pay and so the nurse arranged for me to come into the office yesterday, today, and tomorrow and they'll give me the shots and then I can use my last one Saturday. This way the insurance will cover the full amount of the shots and save me $75. I am thrilled about that!

I also finally got approved for FoodShare. I was very leery about applying. I didn't want to be on "welfare" or be categorized as such. But then I thought about all the people on it that are perfectly capable of working and how we can never seem to get any help because we always fall into that middle-class working man's world of making too much, even tho it's never enough category. And so I applied in May but never got the letter from them requesting more information. When I called last week, she told me what she needed and I had Bryan fax her everything Friday. I got our card today and we've been approved for $223/month. Now I'm just waiting for my booklet so I know what is and isn't "approved". I actually felt a little wave of relief when I found out we were approved because every little bit helps.

As for how I'm feeling, I should be feeling worse for it being two days after chemo, but I am having waves of feeling really bad and then pretty good. I'm wondering how the chemo will hit me now with my new regimen. I guess I'll just have to wait and see.

My PICC Line

I woke up at the early time of 6:15, got my clothes together, mixed my morning Miralax & water, and took a shower, and took my vitamins while drinking my Mirawater. At 6:55 my mom picked me up and took me to the hospital - my grandma couldn't watch the girls until around 9:30 so Bryan had to stay home with them for awhile.

At the hospital, the RT (respiratory therapist) took me to the 2nd floor in the G.I. Lab room 6 and started getting everything ready. She explained the pros and cons of the PICC line and had me sign a consent form. I was pretty nervous about it since all she was going to give me was Lidocaine to numb me and I would be fully alert during the procedure.

She used an ultrasound to find a good vessel to enter and found one right away; however once she injected the numbing agent something happened and the vessel wasn't cooperating anymore. She insert the very long catheter, but couldn't get it to draw so she pulled it out. She spent some time trying to find another, and finally did. This time she gave me only a little lidocaine at a time and kept the ultrasound on the spot she wanted to enter to keep her eye on it. After a few injections, I finally was numb enough and she inserted the catheter, and did her thing with the dressing. As we waited for the portable x-ray to come, my heart was fluttering a lot and I pictured the catheter touching my heart. I was trying not to freak out, and thought that maybe the fluttering was a bi-product of my nerves.

They took a chest x-ray and told me that a radiologist would look at it right away to see if the line was in place and send up a fax. I told the RT about my heart and she thought maybe the catheter was in too deep - this made me nervous. Once the radiologist's report came up, she told me that the line was right at the right atrium and that she was going to pull the line out a little bit. She undressed it and pulled it out 6cm and then redressed it. I felt instant relief in my chest. She cleaned up and walked me down to the clinic for my chemo.

At the clinic my nurse weighed me and took some blood. All of my labs came back great and so she called the pharmacy and gave them the o.k. for my chemo. Originally a nurse from the VNA (Visiting Nurse Association) was going to come to my house to hook up my Adriamycin, but when my nurse called to tell them it was a "go" for my chemo, they arranged to come to the clinic.

My in-house chemo only took an hour and 5 minutes since Dr. Howard dropped the Bleomycin. The VNA nurse got to the clinic early, which was nice. She explained how the pump worked and went over paperwork with me. She taught Bryan (who arrived as I started chemo) how to flush the ports; which he has to do every Monday, Wednesday, and Friday. She gave me a bag filled with all kinds of supplies.

My pump is silent, and that was a huge relief since I'm a light sleeper. It sits in a bag that I can either wear around my waist like a cool hipsack (not) or like a purse. The infusion of the medication takes 72 hours so I have to be hooked up until Friday afternoon at 12:15.

As I sat in the clinic, the site of my PICC line started to bleed. My nurse told me that it happens sometimes and put an ice pack on it. She told me that if it started bleeding again to call the VNA. I keep checking it because I'm completely paranoid and sometimes it seems there is more blood absorbed in the pad than before and sometimes not. I have a mental marker that if the blood reaches a certain point on the pad I will call the VNA about it.

So now I'm just trying to take it easy even tho I'm going out of my mind with boredom. It's like telling someone not to look down - they have to look. Now that I'm semi-incapacitated I want to do everything. I'm sure in a few days I'll be back to my old chemo self, laying in bed, in pain, watching Bones season 1 and reading my book.

I keep telling myself "one down, two to go" but I'm not happy. I hate this line. I hate that it's on the inside of my arm. I hate that I either have to have a "sleeve" over the tubing to hold it to my arm, or let the two tubes dangle like tentacles. I hate that I have to carry a pump around for 3 days. I hate that my kids can't pile up on my lap to read a book or watch tv. And mostly I just hate that this is happening and I can't find any good in it right now. I can see how other people may find some good in it, but I can't find any - not for me, not for my kids. I'm sure God will reveal his plan to me in good time, but right now I keep finding myself praying that there is a plan for me - a long-term plan.

This will stay in for the duration of my treatment

Fear

I wish I could erase the last 7 months from my memory. I've endured many road bumps on my journey and they've left me a paranoid person, afraid for my life. With every little pain I find myself begging God to let me live. I don't recognize myself anymore. I can't find my sense of humor, my sarcasm, my wit. It's like I've broken down on the side of the road and am waiting for a tow.

My latest fear is this PICC line. I thought that Interventional Radiology put them in, but a respiratory therapist called me to schedule it. They don't put you to sleep, just "numb you up real good". Take a look at this - how can they possibly numb you up enough not to feel any of this:

And with having three kids, I'm not looking forward to having this sticking out of my arm:

Now I just googled this picture and perhaps my picc line won't be such a monstrosity, but I'm pretty sure it will be.

I am a stressed out mess. I withdrew Skye from her summer school art class because she is only five years old, at a strange school, and the teachers just let them go after class onto the playground with at least 150 other kids. I wasn't able to find her easily and the last day I took her I watched her walk up the stairs to the playground alone, looking around because she didn't know which way to go. With everything else, I didn't need that stress in my life.

I want to enjoy part of this summer. It's my favorite time of year - I spend months pining after it and this year I have been robbed of anything fun. I can't go to any festivals or any place with crowds. When I ignored this and went to 7 mile fair I ended up in the hospital with some mystery infection. I'm afraid to go anywhere, to do anything, to feel anything.

I wonder if I will ever be back to my old self, the comedian, laughing all the time. Or will I always be a shadow of my former self, always paranoid, always fearful.

The Plan

So my ejection fraction in my heart is 52%. Anything above 50% is normal, BUT my on my original MUGA scan mine was 69%. She told me that it could've been because of the infection, but that it was too big of a drop to ignore. My options were:

1. Stick with the current ABVD cocktail, but get the "A" infused over a 72-hour period rather than all at once at the clinic.

2. Start a whole new cocktail called MOPP for the last three chemos. Included in this cocktail is the same thing as mustard gas used in WWII and it would make me sterile.

I opted to stick with the ABVD because I did not want to introduce all new drugs into my body this late in the game.

I will have to have a PICC line put into my left arm and go in for chemo as normal. Then I will go home with the med and they will go into my body over a 72-hour period. This pretty much eliminates any toxicity to the heart. After my next chemo, we will do another MUGA. She is also going to drop the "B" in the cocktail because this affects the lungs and she doesn't want to take any chances. This is the only drug she can drop without any thought, whereas the "A" is the key medication to curing Lymphoma.

I will have the PICC line put in Tuesday and have chemo right after. I'm not looking forward to the change in my schedule because now I will be needing more help during the week while I'm having my "sick days". Before this, Bryan would take off Friday and Monday and someone would take off Tuesday and that was it.

I'm also devastated that my last chemo will now be August 18th and our family camping trip is August 21-23. The trip is for my sister's birthday and it was going to be my family, my sister and her husband, my parents, and my Brit and her fiance'. The kids were really looking forward to going, as was I.

I'm sick and tired of the bullshit cancer ruining every little bit of joy I have in my life. It has stripped me of my entire summer, my confidence, my sanity at times. I hate it. I hate it more than anything I've ever hated and unlike anything I've ever hated, I can't just ignore it. It keeps sticking itself in my face, talking shit. This was supposed to be over already, but then the lung discovery. It was supposed to be over July 31st, but then the infection. Now the end has been pushed almost a month! Now I have to have another invasive line stuck into my body. I'm going to have to walk around with an IV for 3 days at home. I feel sick.

Waiting By The Phone

Monday I was supposed to call Dr. Howard and let her know how my fevers were doing - they were down finally. In fact, I've been feeling pretty good other than a little chest discomfort when I take deep breaths, and a slight cough. I called the office and talked to the secretary. She talked to one of the nurses and then told me someone would call me back. Well, they never called me back and I passed out; waking up too late to call them again.

I called them back on Tuesday and both the secretary and the nurse were shocked that Dr. Howard didn't call me back. Apparently, she told the nurses that she needed to talk to me, and they pulled my chart and gave it to her. The nurse did tell me that there was a change on my MUGA scan (heart scan) and that they may drop one of the meds in my chemo, but Dr. would have to talk to me about it. Of coarse she was out of the office, and I would have to wait until Wednesday to talk to her. At this point I'm really irritated because I have no idea what is next, when I can have chemo again, what my MUGA results mean, etc.

And today, I've waited by the phone all morning (other than taking my daughter to her class), and when they finally called, I calmed the twins down and answered. Dr. Howard wants me to come into the office today - she thinks it would be easier to answer questions in person rather than over the phone...

Of coarse I'm about to have a nervous fucking breakdown. The last time I was called into a doctor's office in this fashion was to be told there's a mass in my neck that is probably cancer. Is my heart function that bad? My lung function? My labs? Are the spots on my chest that they thought could be small pneumonia really the lymphoma coming back? Or does she really prefer talking in person to talking on the phone? I'm trying to stay calm for my kids. I still have to pick up Skye from class. I don't see the doctor until 3:00. I have that lump in my throat and tears in my eyes and I'm not sure how to go about keeping myself from a meltdown.

I Got a Fever...

I spent all of yesterday taking my temperature and watching it go up and down between 97.6 and 99.8. This is just a low fever, but still a fever and still preventing me from continuing and finishing my chemo. I also feel really bad when my temp it up - dizzy, and just rotten. Today I haven't had any fever (yet) and I feel almost normal. I'm finding myself exhausted and I feel like sleeping is the best thing I can do for myself right now. I imagine my body healing itself; resetting itself while I sleep. I don't know if this is the case, but it's how I imagine it.

I feel like a prisoner in my own home. I don't want to stay here, but I don't want to go anywhere and risk getting sick again. I couldn't bear another hospital stay.

I still have no answers and it's starting to bother me. I understand it could've been a virus. I don't understand the reason for my going to see the pulmonologist again. I really don't want to see him. I don't trust him anymore. I just couldn't think of anyone else off the top of my head. On one hand, it would be good to see him since he knows my history and he typically is a good doctor. On the other hand, I'm going to have a very hard time trusting what he says. I'd like to grill him about his mistake, but I also have to work with the guy and if you know me at all I'm either too nice or very shitty - I have no in-between. My mom is coming with me, so that makes me feel better about it.

My being winded with every little movement has subsided for the most part, although I still feel a little tightness in my chest. I'm hoping this all clears up and I can have chemo on Friday - on Friday I'll be two weeks behind.

Troubleshooting

Every night I get a fever ranging from 99.1 to 100.6. On Wednesday, I had a pulmonary function test and saw Dr. Howard. Because I was still having fevers and night sweats, she wanted my mediport out. She rather be on the safe side and remove it, even tho the cultures had come back negative. There were also some spots on my CT indicating a small pneumonia. She told me that pneumonia can show up on an x-ray even after a person it better. I asked her if it could be my heart causing the shortness of breath and she told me that we can't answer that without checking it out. So the plan was to get rid of my mediport, like yesterday and get another MUGA scan to make sure my heart function is o.k. She also wanted me to see my pulmonologist about the decreased lung function and CT.

Her nurse set up the Mediport removal for Thursday at 2:00. The only problem was that I was on blood thinners and my INR was 2.7. In order to have this procedure done, it needed to be 1.5. She gave me 10mg of Vitamin K which helps reverse it, and told me not to take my blood thinners and that I may have to have fresh frozen plasma transfused if the vitamin K didn't do the trick.

So Thursday Bryan and I arrived at the hospital around 7:50am. We checked in at the front for my MUGA scan and went straight to the clinic. They inserted and IV into my left arm and drew blood for another INR test. After that we went down to Nuclear Medicine for the MUGA. The tech drew some blood and I waited while he put a tracer in the blood he drew. While I waited, I ran into the radiology nurse, who is an absolute angel. She was with me when I had my mediport put in, and helped me thru that rough patch in the days following. She told me my INR was 1.9 but that the doctor said it was acceptable and we were a go for the procedure. About a 1/2 hour later, the nuclear med tech came and got me, re-injected that blood into my arm, and I laid down on the table for the "pictures".

Afterwards I went back to the clinic to see if they needed me for anything else and even tho the interventional radiologist said 1.9 was acceptable, Dr. Howard wanted me at 1.5 so they transfused two units of fresh frozen plasma...it was cold. Afterwards they drew more blood and I waited. I was super tired, so I dozed off and around 11:30 the nurse came and told me that my INR was now 1.5. Bryan and I went and sat outside for a 1/2 hour until it was time to check in to day surgery.

We checked in at day surgery and got into my room. I had to strip down to my socks and put on an ugly gown. I've grown to truly hate these gowns. Why must they be so frickin' ugly??? Anyway, my nurse was in and out of my room asking me 20 questions...the same 20 questions that I feel like I answer every day. I'd like to get a t-shirt made for my trips to the hospital. Bryan and I watched TV until finally the radiology nurse came and got me.

Once we were down in the freezing cold angio room, the interventional radiologist came to talk to me about the procedure. They weren't putting me out - only giving me something to relax me. I put on my brave face and we got in there. They hooked me up, putting on EKG patches, a blood pressure cuff, oxygen tubes in my nose, the finger thing that monitors your pulse. They put arm rests on the narrow table for my arms. Then they covered my face with paper sheets and gave me the meds to relax me. I didn't feel much different, but it must've done something since I really didn't seem to care much about what was going on. The doc stuck me several times around my port with something to numb me up. He did a good job. I didn't feel a thing except some tugging as he stitched me back up.

Once it was over, I was wheeled back to my room and had to be there for an hour before being discharged. My instructions were to keep the dressing on for a couple of days, watch for fever (nice since I already get them), and watch for infection.

We finally left the hospital at 4:30pm.

That night I realized that I had no idea what the next step was. I called the doctor's office this morning and talked with a nurse. She told me that they already had my chart pulled for the doctor with a note on it saying "what's next?".

Later, Dr. Howard called me back and talked to me about my fevers. She told me I could stay off the blood thinners now, and call her on Monday to let her know how my fevers were over the weekend. I see my pulmonologist on Thursday and she already called him to talk to him about what's going on. I still don't know why I have to see him, when they just talked on the phone.

So I'm hoping to get better really soon. My shortness of breath is a tiny bit better every day, but I still get a fever every night. I want whatever this is to be gone so I can continue with my chemo and get this shit over with! I want to go back to work and make some money since we're pretty much out of it. I want to be social. I keep thinking about how I'm going to celebrate once all of this is over. My birthday is in December and I want to have a big party to celebrate making it thru the year. But for now, I'm still afraid to go to sleep some nights and I'm afraid of how my life will be when this is finally over. Will I be afraid with every little ache, pain, or ill feeling? Will I become completely paranoid? Will I always have to live in fear?

Evacuation

Monday morning I had an appointment for chemo at 8:30. Because of my recent infection, they were going to do a bunch of labs, check my vitals, and go over my fevers with me before making a decision on the chemo. My grams was going to come over to watch the girls and my sister was going to take me to my appointment.

When I woke up, I turned on the news and saw that Patrick Cudahy was on fire and had been since the night before. They were asking all residents within a mile radius to close all their windows and turn off their air conditioners. I followed direction - I don't need anything else to be wrong.

Skye was still sleeping and the twins were eating their cereal when the news announced an evacuation from Layton Avenue down. I'm just a few blocks from Layton I thought so I called my husband to see what I should do. My first instinct was to have my sister watch the girls at my mom's house, but he suggested I take the girls to my grandma's instead. I called up my grandma and told her we'd come over there.

Shortly after I got a call from the school district saying that there was an evacuation for anyone within a one mile radius. I knew this was us, so I quick rushed to get everyone ready and over to my grandma's house. I didn't even think about my cats because it was early, I was feeling like shit, and I was so rushed. I figured they'd get the fire out in no time.

At grams we couldn't see the smoke, and I waited for my sister to pick me up. By the time she came, you could see the smoke and even smell a hint of it. I told my grandma that if she was going to get evacuated to call my cell phone and I would send my sister to pick them all up. I didn't realize her house also fell into the one mile radius...just barely.

At the hospital/clinic, I gave the nurse my fever log and she immediately was against my having chemo. She drew a ton of blood for all the labs the on-call doctor had ordered when I was discharged from the hospital and sent them down to lab. She checked my vital signs and my fever was gone but my heart rate was 114 - still a bit high. I told her about my feeling winded with any little bit of activity and about the pain in my chest that just started that morning. Once the labs came back, she called the doctor to tell him everything.

During the down time, my sister and I watched in awe of the fire. It would get better, then worse, then better again. They were working so hard to put it out and there didn't seem to be any end in sight. The evacuation turned into a Mandatory Evacuation because they were afraid of an ammonia explosion. Now I started worrying about my cats.

They asked if I had any pain or swelling in my legs and I told them no, but that I had pain in my right arm the day before. The doctor canceled chemo and had me make an appointment to see my doctor once she returned from vacation on Wednesday (today). He also ordered a CT scan of my chest with PE (Pulmonary Embolism) Protocol. They wanted to check to make sure I didn't have a blood clot in my lung. This freaked me out a lot.

In the meantime, one of my Pastors called the clinic and told me that my grandma and my kids were all at his house. I was a little irritated that my grandma didn't call me like I instructed her to. I sent my sister to go get them all and move them to my mom's house. Once she got there, my grandma refused to go and refused to let her take the girls claiming they were fine and having fun. My sister was pretty upset by this, but as she was leaving my Uncle was coming. My sister told him what was going on and he said he'd "work on them" and to call him later.

My sister got back to the hospital as I was on my way down to Radiology, which was nice timing. I had the CT and we walked back to the clinic. As we waited around, I got more and more mad about my grandma - they're my kids and if I sent my sister there to get them, than those are my wishes and she needs to respect that. I was getting hotter and hotter about it but there was nothing I could do sitting there waiting. Finally my sister called my Uncle and he had everyone at his house. I was relieved, but still felt bad since he's not accustomed to watching kids and had both my grandma and her sister with him too.

We waited forever and finally I asked the nurse what was going on. My nurse had gone to lunch and left a nurse I'd never seen before in charge. She told me they have the report back and she wants to fax it to the doctor but he wasn't calling her back. This worried me because they were only supposed to page him with abnormal results. Another nurse finally told her to page him again and so she did.

She told him she wanted to fax the report to him and he must've asked why because she said "Well, there's no PE but it says some other things on there". She faxed the report and he called her back. I didn't hear this conversation, but she came back and told me that my lymphoma has shown significant improvement (duh) and that he wants a Pulmonary Function Test. I asked her if the report said anything else and she told me she couldn't read it because it was hand-written and not the full typed report. I was pretty pissed off about all of this because I know that something's on that report and the on-call should've asked to talk to me on the phone, but they're just going to wait until today? It could be absolutely nothing - like the lesions on my lungs that I already know about, but they wouldn't know about. Having an on-call and a new nurse were definitely not in my favor.

We left the clinic, went to Walgreens, picked up the kids, grabbed something to eat, and went back to my mom's house. My sister stayed with me until my mom got home and then I took her to get her car. My husband picked up the cats after work and came over to my mom's. We were there until around 7pm when they gave the all clear for residents to come home.

It was a terrible, horrible, no good, very bad day.

My 4th and Today

The 4th of July started off with a fever that went away with Tylenol. I got up and took my time doing all the things I needed to do. During the night I noticed that very little activity caused me to be winded and it was no different during the day. I was devastated that I had to miss the parade, but got the girls ready in American Flag dresses, red and blue hair pieces, and blue hair spray. They looked fabulous. Everyone left and I was alone.

I packed a bag for the day, made taco dip, did a load of laundry, took a much needed and well-deserved shower, and got myself ready. I took a ton of breaks because I kept getting that winded feeling. I'm pretty sure it's my heart rate increasing too much as it did when I was in the hospital and I also think it's due to one of the medications.

Once the parade was over, my sister and her husband picked me up and we headed over to my aunt and uncle's. I heard that my girls were the hit of the parade and that the Cudahy Now was there taking their picture and getting their names. She told my husband they'd be in the paper on Thursday but online before. Then Bryan told me that 3/4 of the way thru the parade Raine started crying because she missed me. That was heartbreaking.

I spent most of the day sitting around talking with my family. Luckily the kids were entertained the majority of the time by the other kids and games. I couldn't believe they ran around constantly from around 2pm to 11pm, only stopping for a sip here and there and for dinner. If only they could bottle up that energy and sell it.

We went to see the fireworks and then had our own display in the back yard. We said our good-byes and left for home. I wished I had more time with them, that they lived closer or we lived closer or something.

I got only a few hours of sleep before my neighbors decided it was party time and I had to move to the couch in order to get any kind of sleep.

Today I'm still feeling pretty bad. My fever is gone, but my right arm hurts and I am still getting winded with any little movement like going to the bathroom, or getting a drink of water. My hands and feet also feel tight as if I'm holding water and I'm not going to the bathroom much. Tomorrow I will go in and have a bunch of labs drawn and my vital signs taken to see if they're going to give me chemo or if I have to wait. I'm hoping they wait because I don't feel ready for a treatment yet, but on the other hand I just want to get these over with.

I have never been afraid to go to sleep before. Since I got home from the hospital, I've been terrified that something is going to happen in my sleep. With every little pain or episode, I fear the worst. This is no way to live. I feel cooped up in my house, yet I'm afraid to go anywhere. I'm so afraid of something happening, but I don't want to go back to the hospital. I missed my girls so much while I was gone, but I need them to leave me alone right now. I just want to lay down and relax until the doctor tomorrow. I want to wake up feeling 100% instead of 65%. I keep wondering why I keep hitting all of these little road bumps. I keep wondering how I am going to make it thru three more treatments.

My Infection

It started Tuesday - or maybe even Monday. I felt pretty rotty Monday but Tuesday I felt like complete shit. I was hot and cold, dizzy, and on and off headache and so, so tired. I convinced the twins to take a nap with me but that nap wasn't enough. When Bryan came home I took a nap on the couch and when I woke up my head was pounding I was shivering. By shivering I mean my teeth were chattering uncontrollably kind of shivering. I took three Tylenol for my headache and sat down.



After awhile Bryan suggested I take my temperature and after the kids were all in bed, I did. It was 102.4. I took it repeatedly, in both ears over and over and the result was the same. Then I tried my forehead thermometer and that kept coming back at 97. I took a cool shower in hopes that my temp was just elevated because I had just woken up. After my shower I took my ear temp again and it was 103.8. I waited a little and tried again and it was back to 102.4. I searched the house for the mouth thermometer and when I finally found it, it said 102.2. I knew I had to call the doctor but I didn't want to. I knew what she would tell me.



She asked how high my fever was and told me it was too high. I told her about my other symptoms and she told me to go to the ER and she would call ahead and let them know I was on my way. Bryan got dressed and I called my sister to come watch the girls until my parents could come. Then I called my mom and asked her to come. I was in tears, I didn't want to go. I knew it would be a long trip and that I might not be released that day.



I got to the ER and they took my home medication information and put me in a room. The ER doctor came to see me and told me they were going to pump me with fluids and antibiotics, take some blood and urine and possibly admit me. Things were rolling so fast, they did an EKG, took a ton of blood, I peed in their cup, they hooked me up to the fluids and antibiotics. They did a chest x-ray, and then another. They noted that my heart rate was higher than it should be. And then the waiting began.



I don't know how long we waited, but there was a new doctor on now. He came in and told me that my labs are showing my body has an infection but they don't know where it's coming from because I don't have any other symptoms (rashes, pains, etc.). He said they were going to give me more antibiotics and more fluids and admit me. And there it was.



After much more waiting (we got there at 9:30pm and they moved me to a room at 3:30am) I was finally moved to a room. It was a private room. I was exhausted, but I had to go thru another hour of questions and being hooked up to EKG monitoring and more fluids and antibiotics. During this whole time I kept getting very hot and sweaty, and then teeth-chattering cold.



I was put on "Neutropenic Precautions" which meant no fresh fruits for veggies, no flowers, and any visitors with cold symptoms had to wear a mask.



Bryan left around 4:30 to relieve my parents and I tried to go to sleep for awhile. Someone across the hall was throwing up all night long so sleep wasn't something I would be getting any of.



The next day (Wednesday) I was so hot that I got up and leaned myself over the air conditioning vent. The nurse brought me some ice packs which I immediately put on my neck and head. All day I went from hot to cold and I'm downplaying it by saying it like that. Bryan came and sat with me and my sister and mom took off work. Sacha watched the girls in the morning and my mom visited me and then my mom went to my house and they brought the girls to visit me. I could tell the girls were upset by it all and that made me more upset. We hung up the butterflies they made me.



My doctor came and told me that they only thing they haven't tested me for was swine flu. I think she was joking. She told me my PT/INR was low and so I would have to have shots of Arixtra in my belly until my level came up. She told me my counts were low so I would have to have Neupogen shots in my belly to boost those. She told me that she consulted an Infectious Disease doctor to try to figure out what the infection is. And she told me I was stuck there.



Sometime during the day I lost my appetite. I tried to eat lunch and dinner, but just wasn't feeling it. My friend Kristi came to visit with gifts and a card from my unit. Sometime during her stay I got those teeth-chattering chills. After she left she texted me to ask the nurse to take my temperature...it was 103.1. This confirmed what I already thought - the chills meant my fever was high and the sweats meant it was low. Bryan waited pretty long, but I wanted him to spend some time with the girls before they went to bed so he left around 7pm. They made me put cold wash clothes on my chest and head, which was horrible considering how cold I was.



Shortly after, the Infectious Disease doctor came and checked me out. He looked everywhere and felt everywhere and asked about everywhere I had been. He had already been thru my chart and test results. He told me that it could just be a virus that my body couldn't fight due to low blood counts. He told me it could be that my port was infected and that the blood cultures would show that, but so far the cultures were negative. Then he said there was a very slight chance it was the swine flu and that he was going to test for that, and that test takes two days to come back.



I was devastated - two days brings me to Friday and my family is coming Friday. I thought I'd be stuck there all weekend.



Being tested for the swine flu meant I had to be put into isolation. Anyone entering my room had to wear goggles, a mask that resembled a duck bill, a gown, and rubber gloves, and my room door had to stay closed at all times. To do this test, the nurse took a wire swab and stuck it up my nose and it wrapped down into my throat. It was torture and it sent me into a crying fit. I cried for a long time - I was lonely, I missed my kids, and I wanted to go home.



That night they alternated Tylenol and ibuprofen and my fever finally broke, going down to 98.2 but I was sweating profusely. My sheets were soaked and around 4:30am I asked my nurse if I could have new sheets. She changed my sheets and was excited that my fever broke and my heart rate went down. I liked her a lot, she was the only nurse I liked and of course she worked the night shift.

By morning the fever had returned along with the hot and cold flashes. It was another long day of crappy nurses, crappier nursing assistants, and emptying my own urine. That's right, I had to pee in a container that sat in the toilet - easy to do. The nursing assistants were supposed to empty this and record how much "output" I had. I ended up writing it all down and emptying it myself most of the day and night. On this day I was getting really frustrated because I couldn't see the girls because of the isolation and because someone was supposed to come to my room every hour and it was more like every 2 1/2 hours. The doctors rounded late and I was homesick.

The Infectious Disease doctor came by and told me the cultures were still negative but the swine flu test wasn't back yet. Then he mentioned being able to go home if we can get the fever gone and the test was negative. This gave me some hope of being out of there Friday. Then the doctor covering for my doctor came by and checked me out. We asked him the chances of my going home tomorrow (Friday) and he said pretty low, but possibly Saturday. I was happy to hear it, but not feeling like it was possible because my fever just wouldn't quit.

My parents were keeping the kids overnight and Bryan left a little after 8pm to go kiss them before he went home.

I cried even harder that night. I was really lonely, I couldn't sleep, I was too hot and too cold and had been sweating constantly for over 24 hours. I really missed my kids and I really just wanted to be better. I repeated begged God to take away this infection and make me well.

In the middle of the night I woke up, the fever was back, and I felt a little tightness in my chest. My pulse ox was 98, which is good so I think it might have been anxiety. The nurse gave me some Tylenol. She was concerned about my heart rate - every time I got up to go to the bathroom it would go up into the 150's. Both doctors had told me the high heart rate was due to the fever.

In the morning my fever was gone and my sheets were drenched with sweat again. I asked the nursing assistant if I could have new sheets and she gladly changed my bed for me. I felt pretty good - just a slight headache but it was the first day I felt comfortable with my body temperature. My appetite was even back.

Sometime after 11am, the nursing assistant informed me that I was no longer in isolation - so no swine flu. And then around 3:00, like an angel the doctor covering for my doc floated in and asked me if I wanted to go home. By 4:00 I was walking out the door, so happy and excited to see my kids.

He told me if my fever comes back and I feel o.k., to track it - how high, the time, etc. He said to come to my chemo appointment Monday and he wrote orders for them to do a bunch of tests, check my vitals, and then call him to make sure I can have it.

I checked my temp around 5:20pm and it was 100. I took some Tylenol and it went away. I wrote it down. I'm hoping to wake up feeling like a new woman tomorrow, although I'm worried I may have to go back. All the antibiotics and flu treatments have my tummy messed up and I'm still feeling a little hot and a little crappy. I was feeling so good this morning and even in the early afternoon.

I'm going to skip the 4th of July parade to avoid the large crowd of germs, but I am going to go to my aunts to spend time with my family. I pray I'll be feeling good enough.