Sunday at UofC

Gosh, its boring up here. There is literally nothing to do except watch TV and/or do "whatever" it is that I brought with me. I brought some cross-stitch but can't get interested in that, I am searching for new recipes to try when I get home, but that isn't proving too much fun either. I'm going to retype my personal recipes and make a cookbook,, so maybe that will take a week or so. I always worry about doing that because of all those numbers -- very high chance of error, but I'll do my best to make sure my recipes turn out right. Anyone want a copy of my recipes, let me know, they will be in Word and I can electronically send them in one huge document.

Beth

Transplant is done!

Well, its done. It was very boring, took about 15 minutes, and now I guess I wait to see what happens. I still have a couple of weeks to stay in the hospital to monitor blood counts, side effects, etc. All the preparation that was done for the transplant....and it was done so fast! I did get some excellent medications which made me feel absolutely drunk, which was a good thing -- but then I slept for a few hours and the feeling was gone. I am praying that this works and I stay in remission for 20 years.

More later,
beth

stem cells tomorrow

My transplant is tomorrow! Looking forward to it......and I'll rest well knowing that the Stanley Cup is secure in the hands of the Chicago Blackhawks. It was pretty cool looking out my window and seeing some of the celebrations up here, mostly people walking around outside and holding sparklers. But it was still awseome. My chemo floor was very happy about it, even though there are some from folks from Arizona and other states (who weren't too concerned about who won).

Not such back side effects yet...little nausea but thats about it. I keeping waiting for the 'shoe to drop' on those side effects. I guess I'm more tired too, but nothing that too awful.

Later!
Beth

Still hanging around....

Well, tomorrow is D-Day for my etoposide, the chemo drug that "knocks me off my feet." The side effects are icky, but should only last for a week or so. My actual stem cell transplant is scheduled for the 11th, so all of this chemo is in preparation for those darn little things.

So far, so good. No terrible side effects other than a headache which just gets worse by the day. Not sure if its the chemo, if its stress, or what its from....but it sure gets uncomfortable. Thankfully they give me IV pain meds to handle it, so it gets better for a couple hours before it gets worse, and then they give me more pain meds. Happy days!

I'm hoping my transplant goes well, and have confidence in the Univ of Chicago and my doctors. The nursing staff is amazing up here, very nice -- it was sort of like coming back home a little bit when I was readmitted.

Beth

Still here!

Day 2 of Chemo!

So far, no side effects other than I'm starving!!! They gave me Dilantin and some steroids, so I'm assuming the steroids have boosted my appetite. I don't need that, trust me. Anyway, I'm going through pre-recorded episodes of my favorite shows, watching some movies, just being bored. I did buy some cross-stitch stuff, but not sure I have the patience for that (and I know that I can't crochet or knit). My stem cell transplant is scheduled for June 11th, so thats just a few days away! I can't wait to get this over. Then I can (maybe) get back to my life, with a few visits to my doctors thrown in every now and then.

Later,
Beth

We're Baaaaaaack!

ShaBAM!

I'm back at University of Chicago for my stem cell transplant and I believe they remember me. This is a picture of the "wipey board" they have in my room. My chemo will start in about an hour (Busulfan) so they are premedicating me with tons of drugs right now. Haven't seen my doctor yet, but he's around somewhere. I;m going to try and keep up with posting, but no guarantees -- apparently the actual transplant wipes folks out for a few days, so I'll have to see how everything goes.

Later!
Beth

Home

Sorry I haven't written in so long, but I'm home and doing okay....still in remission. Going to be readmitted to University of Chicago for "consolidation" chemo on 4/26, so I'll try and keep up with this blog. My stem cell transplant is temporarily scheduled for July/August, so hopefully we'll stay on schedule with those plans....back to work full time in October!!!!

Lost days

Sorry I haven't written. Have had fevers. some up to 103.8, and my mind just doesn't work right with a temperature like that. These started last Wednesdays and I woke up this morning with no temperature, so it will be nice to see if it can stay. Odd thing is, every test (even the repeats of the repeats) are all negative. I have had CT scans of my head, sinuses, neck, chest/lungs, abdomen, etc......and there is absolutely NOTHING irregular. My blood doesn't look any different, and all my cultures are negative for any growth. My muscles feel like I've just gone through the Iditarod, but thankfully nothing irregular was found.

And then I found out my teams got blown out of the water for March Madness. Oh well,

more later...

bone marrow results

The medical students just came in and told me that my bone marrow is 100% clear of all leukemia cells! I'm in remission!!!!!!!!!! How long it lasts will be the question, or what the plan is from here will be the next set of questions, but for now all the cancer cells are gone.

WHOOOOO HOOOOOOOO !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

tuesday

Found out that I'll most likely be up here at UofC for at least two more week. My blood counts are hovering at "critically low" and not climbing. So they have to support me with additional blood transfusions and medications until my counts come up. Hopefully will have results of the bone marrow tonite or tomorrow, but I'm not sure who will or when they'll tell me those results. I'm hoping for remission, but that may be too much to hope for, considering that my counts are still staying so darn low.

Very depressing information.

bone marrow

OUCH OUCH OUCH. Thats all I can say. I felt so bad for the Fellow doing my bone marrow, something went a bit awry and I started feeling the bone marrow mid-way, so the M.D. took over the procedure and helped the Fellow finish. The pain was not torture, but it was more than uncomfortable. However....the drugs I got as a reward -- definitely worth it. More Ativan and Dilaudid pushed IV. I just woke up from the procedure of this morning at 9:30am, and its now 5p. I could go back to bed for a nap, particularly since the RN just came in and gave me VIcodin to keep the pain away. They truly believe in pain control up here....its just awesome.

Monday

A new Monday, a new week.....

And it starts off with a bone marrow biopsy! The really great part of the biopsy are the meds they give me. I'll be sleeping the rest of the day in blissful anesthesia sleep. Its the waking up thats tough and feeling where they put the drill bit. I am praying that my counts will be good and I'll be home by next week. Not back to work, but at least at home.

Can anyone believe Purdue is in the sweet sixteen? Talk about "drug induced state" ... thats awesome and good for them.

And health care reform is passing? Wow...never thought I'd see that happen. My son hooked up a webcam and I can talk directly with the kids and my husband over the 'net. Its just too cool. And I remember watching "Star Trek" as a kid and thinking how cool a "communicator" would be -- and now we have cell phones and talk over the intranet.

Talk more later....

Sunday

My son installed Skype on my netbook, so we're working on webcam'g and talking over the internet with pictures. I can see my beloved Rambi once we get this set up!!! I miss him so much; the kids and my husband says he's sorta lost, walking around the house aimlessly, sleeping a lot and trying to get anyone to hold him. I'm excited to webcam, that way we can all keep in touch with each other with pictures!

My counts are still very, very low. WBC is 0.3 and despite getting blood yesterday, I have to get another couple of units again today.

For those wondering about my crochet skills -- I put the needle down and decided crocheting is not for me. I think I'll work at watercolor painting or something else. Something thats a bit more immediate vs. doing over a month to get a mouse-scarf.

Last night was a really bad night. My back and right hip were killing me, and despite taking Ambien, Flexeril, Vicodin, and Atarax -- I couldn't relax or sleep. Probably overmedicated, but I ended up wide awake at 2am. The great nursing staff here helped me back into bed and promised if I still couldn't sleep, I could chat with them in their lounge -- but I ended up falling asleep at 3am, and got up at 5 am for vitals, etc.

Saturday

Another Saturday, and I'm watching the snow swirling around outside my windows. Its really coming down.

I'd like to ask "Mac" (whoever you are) to please stop putting crap on my blog. I am fighting cancer and you seem to have made this your own forum for absolute nonsense. Do you understand what you've done to my attempts to document my fight against this disease? My focus for this site was to keep my friends/family informed of my progress, my thoughts, frustrations, etc., but you seem to be determined to do nothing but make fun of it. Please, I beg you - stop it. If you want your own site, make one and then you can rant all you want.

Okay, thats it.

Friday

Greetings and salutations! I am feeling much better today, much, much, much better. No fever, things are looking good. My brother was just up here, he's getting HAL tested for my transplant (if that's the course that is chosen). It was soooo nice to see him and his wife, nice to have the company. They brought me a purple rabbit with balloons attached and a ton of Peeps candy, so I'm set for a while. I hear its going to snow tonight? The temperature is going from 65 to 25 in one day....wow. I guess that's Spring! I'm watching the basketball games (out of boredom more than anything) and honestly can't say who I'm hoping wins other than Purdue. I know that probably won't happen.

Just found out that my WBC count is 0.3, and my Hgb and Hct are so low, that I'll need more transfusions tomorrow and Sunday. ARGH.

Wednesday

Sorry I didn't write, but go so sick that I couldn't have raised my head off my pillow if I wanted to. Fever of 102.6 and all the rest of of the gastrointestinal issues that go with this therapy. my blood pressure dropped to the point where they were pushing fluids so fast, it confused me as to how many liters were going in at once. They brought in a cooling blanket in my fever went any higher. Glad I'm here at UofC. Not much news -- just getting tons of platelets, packed cells. I'll write more when I feel better.

Sunday

Only one more day on chemo! Tomorrow at 3p, my current bag of chemo finishes and then I sit for 14 days until my next bone marrow aspiration and biopsy, and then I find out if I'm in remission. I pray daily that this will happen.

My family just left after spending the afternoon here, it was really nice to see them. My son and his friends shaved their heads in support of my bald head. I think he looks quite handsome with no hair. I can't wait to see the video of this shaving party....

Not too much happening otherwise. This is truly a waiting game to see how my body is going to react to the chemo, hopefully it will be good.

By the way ... Happy Pi Day!

Saturday

My team was just in....and they are pulling the stitches in my neck from where they inserted my central line! Yahoo!!! I can finally take a shower and not worry about that anymore. I'll have my central line for another year or so. My counts are great, per Dr. Larsen; kidney and liver studies are well within normal limits (which is excellent, even considering all the Grey Goose I drank previously). My white count has dropped to 1,000 -- believe it or not, they want it at zero to 100. That means I have absolutely NO immunity from any disease. Hence why I'm in protective precautions up here. But my hemoglobin is holding its own at around 10.2, and I haven't had any blood for a couple of days. That's totally different than getting two units of blood daily, so something seems to be leveling off.

Chemo side effects still not so bad, very tolerable. But they are very generous with medications, God bless them. My last bag of chemo goes up Sunday and then its 14 days of waiting to see what my bone marrow is going to do. Please pray that my marrow recovers and I go into remission. I'm still waiting for the genetics on my actual cancer, so I'm not sure if Dr. Larsen will tell me I need a transplant or the chemo route will be better.

I wish I could go outside and breathe some fresh air and feel the rain. I just love the air before/after it rains, it feels so fresh and new -- sorta like the earth regenerates somehow.

And to followup on the clothes Michael picked out for me...amazing! He did an excellent job of choosing very comfortable and bright stuff, just amazing. Jennifer and Michael came up with chips and salsa that I was craving, and gosh that tasted so good. I could actually taste the salsa! Sad how little things are so exciting to me now, but I have a feeling that this entire experience will create a new appreciation for a lot more things that I took for granted only two weeks ago.

Friday

This is Day 5 of chemo, and minimal side effects have begun. Won't go into details, but its not too bad. My doctors see me every day, ask the same questions, but have no news for me AT ALL. I guess everything hinges on my next bone marrow aspiration and biopsy, so this is just one huge waiting game. For those who know me, you know that waiting isn't one of my strong suits. After my chemo stops on Sunday, I wait up here for 14 more days until they do the bone marrow and see what my marrow looks like. If there are less than 5% cancer cells, I'm in remission. If there are over 5%, then they start the chemo regime all over again. I'm praying for 0%.

The recreational therapist decided I was "too bored", so she taught me how to crochet today. Took a 30 minute lesson from her and I can make a scarf just perfect for a small mouse (with a sturdy neck). And that's after 45 minutes of intense trying. So if you know a mouse with a strong cold neck, let me know -- I can set that mouse up with a cute little gray scarf.

I really miss work and being at home. My life is in a hospital room and the unit's corridors. This is a closed unit, so I can't go beyond a set of double doors unless I have to go to an MRI, CAT scan, x-ray, etc. The corridor is 149ft long, so I walk back and forth non-stop until I log a mile of walking. And then I get to go back to my room. ARGH!

Thursday

BORING!!! Thats the only way I can describe life up here. Still on chemo, still have to haul around an IV pole and the meds.

I sense some folks are getting angry with me because I don't want to talk to them....not true. I don't want to talk with ANYONE right now. For the first time in my life, I am saying "hey, this is about me" and I have to save my energies to get myself well. I am choosing to talk with my family, and thats about it. This disease will most likely take my life, and there is no better time (for me) than right now to pull my family together and "huddle" about what is going on, recement our relationships, and figure family stuff out. I love my friends, but please don't get your feelings hurt if I'm not talking with you. Please put yourselves in my shoes and understand that this is week 1 of this diagnosis -- I need my family more than ever and I intend to hibernate from everyone else.

Chemo - Day 3

So far, so good (still)! No bad side effects, but my experience in administering chemo tells me that the bad effects may start tomorrow or the next day. My body is still operating off of the cells it made last week, and once they start dying off and no new cells can be created, that's when the mouth ulcers, the nausea/vomiting, etc., will begin. But those same side effects should be short-term because I'm now getting two units of blood per day to help things along.

Still no news on the genetic coding of my cancer. The genetic coding will determine my final prognosis. Apparently this testing takes several weeks.

Things I've learned:
1. Don't wait to go to the bathroom; since you're hooked to three or four IV pumps 24-hrs of the day, make sure all electrical cords are long enough to reach the potty. Otherwise, you have to take the time to unplug everything, and those few precious seconds can be vital to your dignity.
2. Also, bring enough clothes so your family doesn't have to go shopping at the last minute. God only knows what your children will bring back to you (I trust them, but I am nervously awaiting the delivery of some clothes that Michael is out shopping for right now).
3. Keep your sense of humor. Hate to say it, but even with my diagnosis, there are truly funny things that happen, and I fully intend to keep laughing.
4. Cry when you feel like crying. Sounds cliche, but a good cry always feels good.
5. Tell the people you love -- that you love them. You never know what tomorrow will bring, or if you'll see them again, so like they say: “Dance as though no one is watching you. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.”

Chemo Day 2

Chemo Day #2 has started, only 5 more days to go for the induction phase. So far, so good. Only mild nausea which was stopped immediately with Zofran and Compazine. It was odd when the chemo first started -- I lost all feeling in my lower lip and chin, but within an hour it came back. I have 6 IV bags dripping something into my IV lines.

I need to get a small table lamp and some pictures. They only have harsh fluorescent lights in the rooms, so in the middle of the night when something needs to be done, its either as bright as the sun in here or its pitch black with just the TV for light.

I have met so many nurses from NW Indiana, almost 60% of the RNs I have met are from Dyer, Schererville, Crown Point, etc. They come up here because of the $$ and work 12-hr shifts, so they have a shorter week.

Anyway, things are good.....I keep waiting for the hammer to drop with this chemo, but maybe it won't and everything will be fine. So far I've had 9 blood transfusions -- so for you guys who donate blood, keep donating! Without these units, patients up here wouldn't survive.

C-Day

"Today is the first day of the rest of my life". Quite literally, today is ground zero. Dr. Larsen was just in and told me that I have AML-M5 (monoblastic), and I do not have Flit3. Overall, this information is good -- still have leukemia, but getting into remission won't be as difficult. They are still waiting to hear on other information, they are growing my cells in the lab and will be doing something with them....but per statistics, I now have a better than average chance of surviving this disease. Sad to say that I'll have to have 3 more bone marrow aspirations/biopsies before I leave UofC in 4 weeks.

The chemo regimen that I'm starting is labeled ADE -- AraC, Daunorubicin and Etoposide. AraC will run continuously over 7 days, and the Daunorubicin and Etoposide will be intermittent doses at particularly times/days. This will be one very nauseous week for me, but they are promising tons of medications to keep the nausea at bay. I'm just glad to get this party started -- the sooner we get going, the sooner I can get home.

I MOVED!!!!

My nurse, Laura, surprised me today with the best news I've had since my arrival here: I moved into a much larger room, one with colored walls, a ton of space, and a hard-wired computer. Not promising I'll be in my room all the time, but this is awesome.

Not much happened today except my doctor told me to walk around more, use the treadmill that's in the lounge, and think about a bone marrow transplant. Since I only have one brother, that limits things quite a bit. I'll have to ask him if he'd be willing (and I'm confident he will be here to support and help me).

Tomorrow -- "Let the games begin" -- chemo starts.

Day 4....again

Well, I shaved my head. Figured I will be losing all of my hair, so why wait for it to come out in patches.....just get rid of it all. Can't say I look as good as Demi Moore in GI Jane, but there is definitely something awesome about getting rid of your hair voluntarily. Strips you down to a rawness I've never known. And I have a very nice head. For those of you who know me, you'd be surprised to know how lovely I look with no makeup, no blood supply and no hair. :-)

Day 4

Well, at 4am on day 4 ... I'm up drinking coffee (they let me have my own Keurig coffeemaker in my room) and listening to the overhead pages "Dr. Cat Room ###" "Anesthesiologist Room ###". This information blasts all over the hospital. One of my nurses came in and told me that the UofC Call Center is in Darien (off site) and apparently something happened to a patient, but nobody called the Call Center to shut the announcement off. So its now 4:47a and the announcements continue. I'm about ready to call the Call Center myself and tell them to "shut it down". Noise in this hospital is actually not bad, but I'm in a private oncology room, which seems like Fort Knox with doors, double doors, sealed airlocked doorways, reverse airflows, etc.

Looked up my survival rate for this cancer (Acute Myelogenous Leukemia): its about 30% survival at 5 years, not so swift. But they are still classifying the genetics on the cells, so I'm not going to jump off any cliff right now.

I have to order breakfast soon - UofC has a very nice menu, and no trays are automatically delivered. Each patient has to choose their items from a rather extensive menu, call in to the kitchen, and then your choices are delivered to your room. Its just like a restaurant. The dietician came up and saw me yesterday and told me that I had to order "more calories"....????? I asked her if she noted that I was overweight, and she said she didn't care -- my chemo treatment will probably knock out my appetite, so she wanted to see me order at least 3,000 calories/day. REALLY? This is heaven. She also told me "more fruit". So now the fruit nazi's are watching me.

More later.....

Day 3

So....here I am at University of Chicago, newly diagnosed with AML. I was told at 12:30p on Wednesday March 3rd that I had AML and was considered a medical emergency, and was transferred to UofC and arrived at 6:30P. My first impressions were not good; I am accustomed to the "bright shiney" hospital environment, not a research center with dull walls. The first news I got: You'll be here for at least a month, and I immediately lost it. My family was here, and was very supportive, but to hear that I'll be out of work for at least a month -- what if something happens and I lose my job? How much stuff will happen while I'm gone? I'm angry, tired, and want to turn around and go home. Why me? What did I ever do to deserve this? But I also know that if I don't get treatment, I'll most likely die within 30 days because of the leukemia.

The first night was awful; was having a CAT scan at 2am, more x-rays at 2:30, and the labs at 4a, vital signs every 4hrs. I didn't get one hour of sleep for over 36 hours. And then I met my team: The main physician was awesome and he ordered a ton of meds to reduce my anxiety and help me relax. Result? Slept for 10 hours off and on. And the students up here are also amazing....very sweet group. But I do feel like a medical specimen under a microscope.

So today was my second bone marrow and central line placement. With the drugs they gave me, both procedures were a breeze. I think I slept through the line insertion, and the bone marrow wasn't nearly as bad as I expected. My doctor and his team explained every step, every noise, just about everything step-by-step. They even told me when the most uncomfortable parts would come; but those turned out to be very tolerable and not a problem at all. After sleeping for 6 hours, I woke up to a rather uncomfortable line insertion site, but my bone marrow site is still okay....nothing too bad, and I am sure I'll be able to tolerate it again.