Sunday, July 20, 2008

Sun, 7.20 - Lung Issues and Modified Rating System

Today got me to thinking. I've been posting it was a 'good', 'decent', or other adjective day. Well on my flight I realized that there are really 3 key measurements of the day. They are emotional / spirits, physical, and Doctor / Medical. Often times the doctor will say she's doing great, but believe me - she doesn't feel great. So that's how I'm going to try and characterize each day going forward.

- Emotional: Good. Little weepiness and being upset / needing carrying from others. We didn't have a cry until I was leaving today.
- Physical: Below Average. Today was the first day where she really didn't feel like she had a lot of energy....more on that later in true Mom / Cathi form.
- Medical: Good. See the next section.

WBC: 0.9 As noted below, we expect that to trend up a bit.
Hemoglobin: 7.4. The blood graph can be seen here from 7.8 through 8.10 (random date I put out there as we're unsure how long they'll be measuring it daily).


Dr Ganguly noted that the Leukemia had likely been with Mom for 2-3 weeks before she was admitted. Because the Leukemia increased the production of white blood cells as result of the cancer, the cells did not work as normally should. That's how she brought the lung infections in with her. Her immune system was just depleted.

From culture tests on the speutum, two lung infections have been identified. They are adjusting the antibiotics for the two infections. They are also concerned about mold and are giving medications to prevent any reactions or infections from mold. Her lung infections are critical and can create complications that can be life threatening. Mom did ask him if he'd cured it to which responded, 'THOUSANDS of times.' They will likely do a chest cat scan next week in order to get a better look at the infections in her lungs. In addition they may put a camera into her lungs to look around, suck out some infections, and look for more.

He is requesting extra caution. No Guests are to enter the room before checking at the Nurses' station. No sniffly noses in the room even for allergies. No one is to visit Mom who has been in close quarters with anyone who is sick or the potential of having been in a high germ environment. The mold is a concern and paper garments and masks may be required by the nurses for visitors. She is now required to wear a mask any time she is out of the room (which really began on Friday). Mom will work with the nurses station to make sure guests are informed of proper precautions. The contact with family and Peggy before visiting has been very much appreciated and needs to continue.

For those that do see her, I've instituted 'air hugs' and 'blowing and receiving kisses.' It's great to blow her a kiss and have her catch it, apply it to her lips, then blow on in return for you to catch and apply. The air hug is also an affectionate move that we all know Mom loves. She's quite a hugger!

Her recovery is very much supported by cheerful visits from those boding bad British jokes (sorry Janet!) and words of encouragement. She often times saves the letters and the blog for times when she needs that 'pick me up.' While the well wishers are many, concern of importing infections requires the guest list to be managed.

A follow-up bone marrow biopsy is scheduled at day 14. Based on these findings more chemo may be required. Now that the chemo is complete, bone marrow growth could be occurring - giving marrow to replenish white blood cells and aide in fighting off infections. A normal person would recover in roughly three weeks. With her Q5 Minus, it will take 3-5 weeks before recovering from the cells killed by the chemo. The good news is that she could go home after chemo recovery. Then the wait for 1-3 months before going back for a marrow transplant. And then back to her normal life, hopefully better than before. We can rebuild her...Better than before, better, stronger, faster than ever before. Is the world prepared for a faster Mom / Captain Cathi?!

She also rode the bike today for 2 miles. That's what I meant earlier when I said 'stay tuned below' when the Physical rating was down. It spoke to her dilligence in this that she did the longest bike ride of the 3 days I was there on her worst day. She didn't quite get the 5 times on her breathing toy, but she got it twice and was extremely close a third time. It wasn't without effort though. She probably did it 10 times in the effort.

13 comments:

Unknown said...

Morning Cathi!
Ok – I just posted and I think it got lost in the ether so I’m going to try again. Forgive me if you get two almost identical posts!

So you like bad British jokes! Hmm, I’ll see what I can do. We Brits are pretty good at laughing at ourselves. We enjoy bad American jokes too!

It’s a beautiful summer’s morning here in England. Pity it wasn’t like this yesterday for the BBQ but in true Brit-Grit style we wrapped up against the gales swirling around us and enjoyed a lovely afternoon with the neighbours. The bunnies looked a little startled and the croquet was postponed until we can guarantee some better weather. 2011 looks promising…

Keep your spirits up, along with your cycle socks. You’re doing everything you can to make yourself better. Those pesky cancer cells don’t stand a chance.

Love Janet xo

Skip Peavey said...

Cathi,
I have some great news! Troop 91 is going to have a blood drive in your honor! We will start right away.

We will also have a way for those who donate blood to keep a record of those who donate through giving a special code, thanks to Phil Achten. Thank you Brant Tidwell as well for helping put this together.

I will be posting information on the Troop website and then sending out an email blast to a couple hundred of your scout friends thinking of you.

Additional information about being a bone marrow donor will also be included. I learned a lot from the folks down at KU Med as well as through marrow.org.

These unrestricted gifts are for you and are physical offerings to show our love and support.

xoxoxo Skip

Robbie Stanley said...

Good Monday Morning,
Awesome graph, Conor!! And thanks again for the wonderfully detailed account. It's great for those of us in the remote locations of the Cathi-support team.
Cathi, such a lot accomplished under tough conditions; congratulations on your hard work! A new week ahead now; your support team is strong. I'll be sending lots of love to you today.
Conor/Peggy -- where do you get the masks? Is there a brand that's better than another? Can I order it/them online?
Thanks, all, and many tight-though-virtual hugs to you, Cathi.

xox
Robbie

Mags said...

Good morning Cathi! Hope you had a good night last night!

I am in Ann Arbor, Michigan, luggage-less. Sigh. Apparently NWA decided that they should not load my luggage on my plane. It's still not here. Oh well.

Michigan is a lot cooler than Kansas right now so that is a very nice relief!

Carol sends on her greetings, prayers, and positive thoughts and wishes your way.

Hope you have a splendid day!

Love-
Mags

christie said...

Cathi,
How lucky the hospital is to have a patient like you to keep them inspired...I know you are thankful for their care but I have a feeling that they are equally as thankful to have a patient with your attitude and determination. I am sure that if record books are being kept at the hospital you will be in all of them from the number of times you made the staff smile to the number of miles you registered on the bike and of course the speed at which you showed this evil disease who really is commander. Keep on keeping on...with each day you are one day closer to victory. You have many people cheering you on and proud to be your friend.
Christie and Nick

Janine said...

Cathi,

I just wanted to let you know that I am praying for you daily. You are a very special person.

I am looking forward to sharing a bunk again next year in Breckenridge. You can even have the "real" bed.

I have been a registered marrow donor for years. I would be thrilled if called to donate for you.

I just started dating someone from my church and he is a non-motorized biker. I have finally found someone to get me out on my bike. I would love to have you join us. Keep up the journey to good health.

Please know that you are loved and very special to many people.

Blessings,

Janine

gail said...

Monday already? The time is really flying by. You've had 10 days at KUMC already - I hope it has passed by as quickly for you as for me. I glue myself every night to the blog awaiting the updates from Conor. All systems look fantabulous Cathi. Yea!!!!

Is there anything you can think of that I should bring with me from Colorful Colorado - other than a perfect donor match? LOL. (And if I find one, I'll make sure he is tall, dark, and handsome (and single and smart) just for you!!) (very big grin)

Ben is working today to put up a storage shed in the backyard. It is a big job, but I'm confident he can handle it. First on the agenda is how to mix up some intense defoliant to get rid of the trees that grew from weeds in the backyard. Chainsaw is first on the list.

He has promised to finish painting the trim on the house - the job he started about 4 years ago but never finished. At least I hope he can finally take down the blue tape around a few windows and the back door!

Coffee is ready. Can you have coffee there? I have kept some Costa Rican organic beans in the freezer for special occasions - I do believe this is a special occasion!

Have a wonderful day dear Cathi.

We love you!

Gail (& Ben)

Melinda said...

Good morning!!
you know I'm not a computer kind of gal, so I'm goin to try this blog stuff...
It's great to read the happenings -- I'm not surprised that you are still full of the Cathi spirit we all know and love, you know maybe if you stay on that bike, you can ride your way outta there?!?

You GO, girl
lots of love, Melinda

Debby said...

Good Monday Cathi,
I am not surprised to see you are giving your all. As my Dad would say, "it's another bump in the road". You happened upon a big one...but nothing is too big for you to conquer. I hope you get some serious air time along the way!
We are off to Colo. tomorrow and will be thinking of you while we are taking in the gorgous mountain views. I had not thought of doing a zip line thing, but we may have to find one, it looks like a blast.
I want you to know that you are in the thoughts and prayers of all of the Hoheisels here and we are sending much love your way. Keep on pedaling!
Debby Layne
ps great job Connor, love the pics

Anonymous said...

Cathi,

Obviously, I'm sorry you are having to go through this "adventure" in life. We've always been told that "if you have your heath, you have everything". Your health may be at risk, but you have sooooo much. I enjoy seeing your children "take the lead". Keep up the riding!!

Steve English

Anonymous said...

Cathi,
Believe it or not I was cleaning up my web-site favorites this morning when I came across the Troop 91 site. I haven't clicked on it in years but something made me do it, and now I know why. I came across the blood drive which led me to this blog. I just want to offer support and prayers from myself, Danny, and the rest of the Hamburg family.

I know you are in good hands. I am a friend and colleague of Dr. Abhyanker. Before he moved over to KUMC he was one of the doctors running the leukemia program at St. Luke's Hospital. I took care of dozens of patients with him as the endocrine consultant. I know what you are going through is long and hard but it will get better and I have seen it over and over again with my own eyes. It looks like you have great support from family and friends who will help see you through.

I will continue to monitor your progress from afar. Again all my best.

Mitch Hamburg

Sara Beth said...

Love the the visuals Connor! The people surrounding your Mom with love, prayers and kindness are amazing. It seems the entire world is cheering and Captain Cathi is in the lead.

Air hugs and kisses to you all.

Sara

Sarah said...

LOVE the air hugs and kisses!! Here is one all the way from Houston. It should be there around the time you wake up in the morning. There will be one from me, one from Anna (3) and a big air lick from Abby (1). She hasn't mastered the art of close mouth kissing yet.

Hehehe
Sarah