I'm Home!!!

The doctors let me go home today since I had several days of rising counts with no fevers, and my neutraphils hit 0.5.  It took most of the day to get my medications, discharge orders, and home health training completed.  It also took that long to pack up the room - who knew you could collect that much stuff in one month!  Brant drove me and mom home.  It is so nice to be on my sofa updating this blog after saying good night to the kids.

I have to give a big thank you to the nurses and care partners that cared for me on the Acute Oncology floor at Massey Cancer Center.  After 32 days in the hospital I thought I met each of them at least one shift, but amazingly, there were some I never had.  They were all so professional, so competent, but so caring and gentle.  They worked together as a team and really supported each other.  They were my cheerleaders when I walked the halls and always had a smile of encouragement.  Whenever I had a float nurse from another floor, I could tell.  Although they were good, it wasn't like the regular team from oncology.  Thanks for all you did - although I am sad I will likely be back soon to visit you....at least I know I will get great care.

Good Bye Gertrude

Today my counts were up again.  WBC = 1.2, Neutr = 0.4, and Platelets up to 59.  I am inching closer to discharge, maybe Monday.  Since all of my meds are taken as pills now, they disconnected my IV pole and I am a free woman!!  It was so nice to get a shower and walk the halls almost like a regular person today.  Gertrude is over in the corner of the room looking a little dejected but I feel no guilt.  I spent plenty of time with her and am ready to move on......

Progress!

Just a quick note to say my blood counts did budge today.  My WBCs went from 0.7 to 0.9, Neutraphils went from 0.2 to 0.3, and platelets jumped from 33 to 47.  I don't know how long it will take to get to my discharge level of Neutraphils equal to 0.5, but I am happy that at least for a day they moved up!!

Still Waiting

Not too much to new report.  My WBC are back at 0.7 and my Neutrphils still holding at 0.2.  My platelets have continued to climb and I am up to 33 on my own with no transfusions, so that is some progress.  The nurses and doctors are fairly certain I am just having a slow recovery, especially given my previous treatments that have taxed my bone marrow already.  They assured me there are other patients that have taken longer than this to have any type of recovery.  They will do a biopsy next week if there is still no progress.

My mood and energy have been up and down.  After a bit of a down day on Tuesday I re-read key scripture verses and sort of merged them together - "Be anxious for nothing....for I know the plans I have for you...Be strong and courageous...my rod and my staff will comfort you".  Probably not theologically correct, but it helped.  I prayed that night for just a small sign of hope to hold on to.  Wednesday I awoke after one of my best nights of sleep and full of energy and optimism.  My WBC had increased from 0.6 to 0.7.  My mom returned from two days back at home and I got to see Brant for a few hours.  So a great day and answered prayers.  I did hope it would translate into higher numbers today, but no such luck.  So today has been a little more challenging and a little less energy.  I was so hoping to be home for Memorial Day weekend.  It has been a reminder that I really need to take it ONE DAY AT A TIME and not make plans in my mind.

A dear friend back in Blacksburg was returning books to the library and saw there was a Blood Drive. Even though she is a grandma (and "Mom" to many Mech Engr students) and has never given blood before, she decided too on my behalf.  My mom was so inspired that she just went downstairs to give blood at the drive they are having here.  So consider giving blood whenever you have the chance!! And if you are in the Richmond area on June 1st, there is a Run Walk event to benefit the Be the Match Registry.  This non-profit organization works to increase the number of people available to be bone marrow/stem cell donors.  This Registry is critical for blood cancer patients to have a chance for a cure.

Speaking of bone marrow donors, I still haven't heard if my siblings are matches.  If they haven't heard by Friday they will be checking in with the lab.  Hopefully I will have a match, but if not, I will be counting on the Be the Match Registry myself!

Guess I will have some extra time to watch Downton Abbey episodes.  Thanks to a suggestion from a friend this has been a fun diversion.

Slow Progress

After watching my WBC  count rise Fri. Sat. and Sunday, I practically had my bags packed and figured I was out of here.  But of course, my plans aren't always realistic.  My WBCs have sorta just stalled yesterday and today.  It is a tad depressing.  The doctor said he thinks it is just a "slow recovery" and I have had similar experiences before.  It took me longer than expected to produce stem cells when I did my auto transplant in 2007.  And my cell count didn't recover in normal time when I did my first ABVD treatment in 2005.  Soooo, we will try thinking that my marrow is taking extra time to make extra good blood cells.  But it is hard not to worry and be impatient.

One of the other patients on the hall got discharged today and although I am so happy for him and his wife, I have a new term - "discharge envy".  In order for me to get out of here I have to achieve a neutraphil (related to WBCs)  reading of 0.5 for two days in a row and have no fevers for 2 days.  I have been doing well with no fevers, but my neutraphils have been stuck at 0.2 for three days.  I feel pretty good and am walking a the halls.  Yesterday I got back on the treadmill for the first time since before my chemo impacts took hold. Everything else seems to be recovering....my stubble is even growing out.

Watching all of the coverage of the horrible Oklahoma tornado today does put things in perspective.  My prayers go out to that community and all of the people that are dealing with such tragedy and loss.

Well, I better go hit my afternoon session with the treadmill.  I am hoping some praise music will lift my spirits a little.

Way to go George!

My brother George ran his first road half marathon today.  He decided to sign up for the Sydney Half Marathon just 2-1/2 weeks ago in my honor and was able to raise over $4000 for The Leukemia Foundation.  His unofficial time was somewhere around 1:47.  I am so impressed, and touched.  Thanks George.

So my sister Ruth walked a marathon for me last time I was sick and my brother George ran a half marathon for me this time. I will plan on this being the last go around with cancer because I'm not sure what my oldest brother John would be up to if there was a next time!!!!  I am sure it would be interesting.....

Things continue to go well in our little room.  Hard to believe it has been 3-1/2 weeks.  I have had a nice stream of visitors over the last few days.  The best was seeing Brant and the kids on both Friday and Saturday.  It is good to hear their stories and they walk the hallway laps with me.  They did not appreciate me introducing them to the nurses as "my babies".  Even though they always will be.

My blood counts have improved.  I was up to 18 on platelets today and didn't have to get a transfusion for the first time in I don't know when.  My RBC count went up on its own and the WBC ticked up from 0.5 to 0.6.  I am hoping this is statistically significant and not just within the margin of error of the testing.  Can't wait to get my lab sheet in the morning to see if I have gone up some more.  They are talking maybe a week and I can get out and take a break at home for a little bit before we move on with treatment.  It just depends on how quickly my counts recover.

Mom is doing well, too.  She changed my Hickman dressing today with the assistance of the nurse and did a great job.  She still has those nursing skills, even with the "new-fangled-gadgets-they-come-up-with-to-make-it-safer". She also went to a luncheon at the Hospitality House that was put on by a local church for people that are staying there while their loved ones are at MCVH.  She said the food and music were very nice.  I think it is good that she is able to get out and have some other contacts.  I am planning to kick her out for a few days next week so she can spend some time back home.

It has been a looooong day and I am ready to get some sleep!!

The "No" Do

You can't really call it a new hair-do if there is no hair...... After losing about 85% of my hair with it just falling out over the last 7 days, Massey's Magical Touch came to my room and finished up the job this afternoon.  The poor lady that cleans my room each day, I just know she was thinking "oh, now you cut it....". Even though I wasn't sure , the last 15% of my hair was looking a little too mad scientist and it had to go.  I have never actually had my head shaved before.  It felt kinda funny.  The hairdresser volunteer was very nice and gave me a do-rag and a quilt made by her church members for cancer patients.  The quilt has lemons on it, and I will try to think of making lemonade whenever I see it.

So I will be sporting lots of new headgear.  The above was made by one of the soccer moms.  And my brother made one that is travelling over from Australia. 

Things are going well here.  I lost my "progressive care" label and am just a regular old patient again.  My electrolytes have all been in a good range for over 24 hrs and they took me off of telemetry - yeah no wires! My platelets are still being a bit stubborn.. After going as low as 3, I am excited that they were up to 8 yesterday and 9 today.  If I hit double digits tomorrow I may not need my twice a day platelet transfusions.

The doctors are shifting me back to taking pills instead of getting my meds IV.  I am lazy and would prefer it stay IV, but then again, I don't want to bring Gertrude the IV pole home with me.  The doctors finally reduced the IV fluids that I am getting.  I told them I would like to sleep more than two hours without having to go pee!  Sorry if that was TMI.

So my job is to avoid germs, walk, and eat as well as possible while we wait for the white cell count to go back up.  Cancer is a lot about waiting......learning patience and dealing with the wait is something I am getting lots of practice with, but still struggle with. A verse that helps me is Psalm 27:14 - Wait on the Lord; be strong and take heart and wait on the Lord

Another day.....

It is a sunny Tuesday as mom sits and reads her 206th (at least) magazine. We had a nice selection in our care packages and she has been hitting up the volunteer cart stock as well. Yesterday was definitely a "blechy" day and the hours just crept by. But today I am feeling pretty good and it is always nice to start a new day knowing it is going to be different than the day before. 

After pulling hair out steadily since last week, I was so looking forward to the Massey salon lady coming up to shave my head today.  But we found out she called in sick and won't be back until Thursday - aargh!!  Two more days of hair EVERYWHERE!!! Yuk!

The induction chemo was successful in getting those Leukemia blasts out of my bone marrow, now it is just a waiting game until my own cells start growing again and blood counts return to normal.  I am still considered "progressive care" which basically means I am a needy patient and my nurse should have a lower patient count.   My days have a fairly regular pattern.  They draw blood overnight and see what all I need.  Then we spend most of the morning doing repletions of whatever is low - platelets, red blood cells, and potassium are the big ones.  I take pills and they give me IV meds to prevent infections.  If I spike a fever there is another whole routine that goes with that. Lately they have struggled to keep my electrolytes up, so I get labs done again in the afternoon and another round of repletions are done in the evening based on those results. 

My platelets have been below 5 for a few days now.  They give me transfusions, but I am "refractory" to them and my counts don't go up.  Every now and then I might hit a batch of platelets that my system likes,  but I haven't had one of those in a while.

My stomach is still a mess.  I am eating some.  It is definitely hit and miss on what works.  When I watch TV and see the commercials, I have a hard time imagining that my stomach will ever be able to handle something like pizza again.  But I know it will heal as well.  It just can't get better until my immune system is back up and running.

Yesterday my nurse who I have had for three days straight taped up some things on my bathroom mirror before she left.  One was of Dori and it says "when life get hard you know what to do.....Just keep swimming, swimming, swimming...."  That is some good advice!

Happy Mother's Day to me - EMPTY BONE MARROW!!!

Isn't empty bone marrow on top of every mom's wish list?  Right next to the new jewelry or a day spa gift certificate?? Well it was tops on my wish list for sure, but I didn't expect to hear anything until Monday at the earliest.  The doctor walked in during rounds and casually asked  "did they give you the good news about your bone marrow?"  I couldn't believe it!  I asked if he was sure it was my report!  He went and got me a copy for my own records.  Sure enough - no sign of disease post chemo.  Mom and I had lots of tears of joy and several prayers of thanks after he left.  I know this is just the first of many steps, but it is a big one! How great to get the process started in the right direction. Thank you for all of the prayers.  I am so happy that they have been answered!!

So this means that I will spend the next few weeks recovering in the hospital.  Once I am making my own blood cells again, they will do another bone marrow biopsy.  If my good cells grow back without any leukemia cells present, they consider me in remission and would work to move towards transplant as quickly as possible.  I am still waiting to hear if my sister or brother are matches.  Hopefully we will have some results this week,

My platelets continue to be very low.  The skin over most of my body where the rash was at has basically all bled together and is a lovely shade of purple.  I resemble Barney if you just painted my belly green.  The parts of me that did not have the rash are now covered in more little red dots from the blood vessels that pop with low platelets.  I can only imagine how much more lovely I am going to look when my hair falls out completely. The headlines will read -  Purple Polka-Dotted Bald Lady Scares Small Children.  Seriously though, it is pretty depressing to look in the mirror.  Mom tries to remind me that it is just an external thing and it is temporary.  I do feel better, I am starting to eat some solid food, I can walk the halls....  Now if they could just get my platelets and potassium levels up!!

Happy Mother's Day to all the lovely moms out there.  I got to talk to my awesome kiddos this morning and can't wait until I can give them big hugs again!!

"Benign" Rashes and Low Counts

It has been a busy few days fighting symptoms and trying to keep things stable.  I used to be the easy patient that was given to a nurse because I didn't add too much work, but not so much anymore.  The drug rash that started on Wednesday became a major issue for me.  Although the doctors kept saying it was benign, it spread to cover almost my entire body.  It was extremely itchy and scary to look at.  The docs changed out all of my meds trying to make sure I wasn't still exposed to whatever was causing me to react.  On Friday, I had a dermatology consult and she confirmed it was a drug rash, and said that it was being "bled into" because my platelets are so low.  She changed up some of the meds to treat the symptoms and I have been feeling much better since then.  I still look pretty scary, but I guess it will go away eventually.

Brant was here Thursday and Friday and I enjoyed being able to spend some time with him.  I am hoping to see the kids again before too long.

On Thursday morning I had my bone marrow biopsy.  I am wondering how long before my hip bone looks like a piece of swiss cheese.  The guy doing it was pretty good.  He made the comment, "you have really strong bones" when he was done.  Funny, but I have heard this from each person that has done a biopsy on me so I am guessing that must mean it is a little tougher to get the sample.... It is hard not to be anxious about the results.  It will determine whether I do more chemo or not right now.  Please pray that the chemo wiped out everything and they find an "empty" bone marrow.  I should get results early next week.

Today I got hooked up to telemetry so they can keep an eye on my heart.  My potassium levels are very low and they just want to be safe.  More wires attached to me does not make me cheerful, but mom says I should be glad they are being so proactive.  I am pretty close to the "bottom" of the cycle (in my nadir), and hopefully will start rebounding soon.  My platelets were below 5 today which is really low so little blood blisters are popping up on my skin.  I have been spiking a temp about every night, but it comes down with Tylenol and the cultures they have drawn are all negative so far.

Despite all this stuff I actually feel pretty good today - especially since the rash is more under control. And if I can starting eating some food again,that will really make me happy!! Enjoy your weekend peeps...I think I will hang out here...

Good Days and Bad

It is a quiet Wednesday evening in my luxurious accommodations of two weeks.  Mom left this afternoon for a few days at home and Brant will be down to visit me tomorrow.  So I am flying solo for the evening.  It is a good day for it to happen because I have been up and about today and feeling very well.

The tummy troubles have continued to plague me.  Lots of pain and I haven't eaten much since last Friday.  Yesterday was not a good day.  They decided to order a CT scan of my belly and then I had to drink like 1000mL of liquid prep - are you kidding me?!?  I am getting the scan because my belly hurts!!  The results during the night confirmed a very inflamed upper GI tract - which could be torn up from chemo, but could be caused by infection.  They started a new antibiotic overnight and by this morning I was breaking out in a rash....oops.  Switched me to another antibiotic and gave me some Benadryl and steroid cream.  The doctor says it is "benign" but it is kinda freakin' me out.  Actually it isn't too bad, just aggravating.

Despite all that mess, today has been great.  I managed a couple of continuous hours of sleep last night after the CT scan and woke up feeling good.  The nurse said that the lab tech was "super excited" to report my platelets were at 37 and I didn't need a transfusion of those.  My hemoglobin was 6.6 so I did get some red blood cells which always make me feel better. I managed a shower which is a MAJOR accomplishment with an IV pole and found that the hair loss has begun.  I was hoping it would wait until next week, but I realize it is inevitable.  The Massey Styling salon can shave it for me, but they are actually closed this week so I will probably just have to deal with shedding.

I had visitors from VDOT and it was nice to talk about something other than hospitals and medicine.  They brought well wishes from my co-workers which is really nice.  Yesterday when I was feeling pretty bad, I got my first cards in the mail and a care package from Hawaii.  Gertrude the IV pole now has some bling in the form of hand painted tree nuts.  I think she is happy with all the compliments. As you can see I have quite a windowsill of love and support!!  Thanks so much everyone.

The other really big news today is that my brother George in less than 2 days has gotten over $2500 in support for his half marathon.  He has moved into the top ten of individual fundraisers for the Sydney Half Marathon.  I told you he was an overachiever!!  Put some miles in for me, bro, I would love to be out on the beach with you!! Check out his site - Running4Rachel

Running for Rachel

My brother George in Australia has recently taken up running and is getting very good.  He always pushes himself in life with new challenges and never likes the status quo.  He is going to run his second ever half marathon in my honor to raise money for Leukemia Research.  Check out his page here.:
Running for Rachel Half Marathon.    Even though we are half a world away, he is going to find a way to help.  Thanks George!!

Monday night is coming to a close and we can put another day in the books.  I had a little appetite today and tried a popsicle and some gatorade.  Then I tried a bite of frozen banana and found out that WAS NOT a good idea.  Hey - trial and error.... After an intense episode of pain, I was so relieved when it was over that I actually had a good day.  Happiness is relative sometimes. 

My counts continue to stay low as expected.  I had a bag of platelets and a bag of Red Blood Cells today to perk me up.  Unfortunately I was running a little fever in the morning so I had to go thru the battery of culture tests and wait for Tyelnol to bring down the fever before I could have my transfusions.  So the day stretched out pretty long.  No word on the fever but it has not returned since the Tylenol.  If you ever want to do something to help - DONATE BLOOD.  I can not begin to tell you how many blood products I will go thru over the next few months in order to support my poorly functioning bone marrow, but it is a lot.  So give whenever you can.

Mom and I wheeled around the hallway two different times today.  I was able to get up and walk a little of it, and enjoyed strectching my legs.  I'm looking forward to some rest tonight, and am hoping my needy friend "Gertrude" the IV pole will not keep me up beeping half the night with Air in Line.....

Sunday Blessings, Part II

It is amazing to think that we have made it thru a week and tomorrow will start a new work week.  I feel like we have taken out a significant chunk of time in this process and that at least I'm not at the very beginning.  The last few days have been rough as the chemo takes out all your healthy cells that divide rapidly - this would pretty much include everything from one end of your digestive tract to the other....nuff said.

The doctors and nurses have been really great about getting on top of my symptoms.  They have tried several strategies including a morphine pump that I control as needed so I feel much better today.  I still don't have much energy. but I did make it out of the room and walked a 1/2 lap or so and then got pushed for a few more by my sister who is up visiting today.

Mom was able to walk to a neighborhood church again this Sunday for services and then got out to do some laundry while my sister was here.  So she has had her spiritual and emotional threrapy for the day!!

Our son's soccer team wore orange socks (the color for leukemia) at their tournament this weekemd - very cool.  All of the kids sports teams have really rallied around Team Cox.  It has been nice to read their sweet cards, wear wristbands, and see the pics and videos that have been sent.  Thanks Kodiaks, New River United, and Diamonds!  You guys are great cheering squads.

The Fun Begins

I guess it is unrealistic to take 7 days of straight chemo and not feel any effects.  Things started getting a little iffy yesterday but today it seemed like several things hit all at once.  But on the bright side - I finished my last bag of chemo and Brant and the kids came to visit!!  Katie had a little cold so they wore face masks just to be safe.  We all put on the matching Mickey Mouse face masks for the picture.  I felt good enough at one point during their visit and was able to do two laps around the hall with them.  I showed them where the treadmill was at.....but no demonstrations today.

Thank you for all the care packages we continue to receive.  It means so much.  I especially like reading the cards and words of encouragement. Our little room will be overflowing soon.

I am having a lot of gastric issues including nausea and upper GI heartburn.  The pain is not fun but I am hoping a good night's sleep and some of the measures they have taken will bring a little relief for tomorrow.  The next 7 -14 days will probably get worse so I am preparing myself for the challlenge.  I can do all things through Christ who gives me strength.

Good Night!

Clothes & Gadgets

They have hung my 6th bag of Cytarabine.  Only one left to go.  I woke up today feeling some effects.  My platelets had fallen to 8 so I got a transfusion of those little guys.  The Benadryl they gave me to prevent another reaction did not help my attempts to get up and going.  Mom finally nudged me up to breakfast and then I remembered - I have clothes to put on today!!!!  Last night my friend's mom (the personal shopper) stopped by with a batch of shirts that she had modified with velcro to work over my IV lines.  It was quite exciting to be strolling around without a green and blue gown!!

Although it was a slow start to the day, I did come around.  Wearing pink helps.  We had visitors from my mom's church, and it was nice for her to have lunch with a friend.  My sister sent up some organizational gadgets for our room including a shelving unit.  It was a perfect fit and an easy assemble item. My "tooly" personality really enjoyed the afternoon project of putting it together and reorganizing the room.

I am still walking the halls with mom and spending some time on the treadmill with Pandora.  It is a great time to escape into the rhythm and words of music.  God seems to have taken over the DJ role of what comes out of my Pandora box.  Each day I am greeted with songs that I need to hear.  Today I felt a little less rock and tuned into the Christian Contemporary Channel.  The praise songs that played during those 20 minutes really raised my spirits.

I better go eat some of this exciting dinner they have prepared for me......