Making Lemonade in 55 Gallon Drums

I Fought the Doc and the Doc... WON!

2009-01-25T07:36:00.000-08:00

Sometimes you just can't win. I truly believed that I would be headed home by now, but no, here I am in the most uncomfortable hotel suite I have ever stayed in. The bed is hard as a rock, so I wake up each morning with a backache and both hips aching. The sofa and chair are broken down and impossible to sit or lay on for more than about 15 minutes. I have had to resort to a heating pad to get my skeleton to work in the morning.

Today is transplant plus 46. That means I have been in Denver for 56 days. Last week my doctor told me he would probably keep me here until AT LEAST transplant plus 60. That means I won't be in my comfy recliner for the Super Bowl, so I have set my sights on the Daytona 500. If he hasn't set me free by then, I'm going to just run away.

I go to the clinic every Monday, Wednesday and Friday. They draw my blood and run my labs and then either a doctor or a nurse practitioner comes in and asks me the same questions: are you have any vomitting, nausea or diharrea? do you have any rashes? are your legs swelling? how's your appetite? how's your vision? I dutifully answer honestly each time (no, no, yes, it sucks, blurry). It's so boring that I'm thinking of creating some real whoppers to make them sit up and notice how well I am doing.

I have had to receive two units of red blood cells each of the last three Fridays. Between the clinic routine and the transfusion, it eats up the entire day. But then, it's not like I have places to go and people to see.

I miss everything about my life, my home, my kids, my grandkids, my friends, my extended family, my office family, my office . . . maybe even the wind --- how sick is that?

All I can do is fire up the heating pad and count the days, transplant plus 47, transplant plus 48, transplant plus 50 . . . I can't count much higher than that, so I better be Cheyenne bound by then.

Thank you all for the cards, phone calls, prayers and overall support. I helps so much to know there are so many people who care.

New Year's First . . . Now Christmas!

2009-01-03T14:57:00.000-08:00

I'm sure it's not horribly uncommon for some families to celebrate Christmas sometime after New Year's, but this is the first time for our family. Every other year we have two Christmases . . . one on Christmas Day and another sometime between Christmas and New Year's when my oldest son and his family return from his wife's home in Huelett (Wyoming for all of you both in state and out who might not know where Huelett is).

This year, Christmas Day was spent in my little hospital room --- no tree (real or fake) allowed, no fancily wrapped gifts and a choice of crappy ham or crappy pork for dinner. Steve and Dylan did drive down for an hour or so and that was pretty much that.

Now New Year's Day was a completely different story. At transplant plus 22 days, I was released from the hospital and "transitioned" to a long-stay hotel suite not far from the cancer clinic or the hospital. Steve, Dylan and St. Gwen came down and moved me and left Dylan behind as my "primary" caretaker. He's doing a fine job and it has been a pleasure to spend some one-on-one time with him (even though he beat me at Scrabble AGAIN last night).

Tomorrow will be the Lathrop family Christmas. My son Jake, wife Sara, children Jameson (3) and Madeline (almost 1 year) and my daughter, Rayme, husband Rich, children Emmaray (just turned 4) and Hayden (2) will come down to Denver and we will open presents, eat something easy and simple, and celebrate another year of living.

The weeks ahead will be filled with trips to the clinic every other day where I will try to convince Dr. Rifkin at every visit that I am ready to go back to Cheyenne under the care of Dr. Batezini. I'm giving him three more weeks and he's still singing that tune about up to 100 days. Want to place a wager on who wins?

Even though this phase of my treatment was no walk in the park, I am doing very well. Each day I get a little more appetite back and a little more strength. I can't stand all the idleness, but I don't yet have the wherewithall to focus on projects, reading, watching tv, or doing much more than taking short walks and long naps.

I hope everyone had a Merry Christmas and that their New Year got off to as great a start as mine!

Update from Hotel Deja Vu

2008-12-11T14:33:00.000-08:00

Actually, I am in room 3406 at Presbyterian/St. Luke's Hospital in Denver. But . . . for all practical purposes it could be Cheyenne Regional Medical Center or any other institution occupied by nurses creeping silently by in their crocs and tennies, patients roaming the hallways accompanied by a very quiet, skinny friend and the food and nutrition workers who roll their carts up and down the uneven surfaces of the hallways.

My particular room is neither large nor small. It is neither nice nor dowdy. It is a simple box with windows on one side. The view is of a concrete courtyard and my windows are precisely disected by a yellow refuse tube through which scads of old ceiling tiles, sheetrock and other building materials shoot as the floor above this one is being remodeled.

I finished that first chemo drug on Friday last week and then the second one started. It was called cytoxin. I know how it earned its name. It is highly toxic and after the first dose, the patient has been mutated into a one-eyed, gagging, puking, moaning monster. Not having partied too hard since college (exception WACO - Casper - Jerry Orr, Susan and I shot for shot) I had forgotten the myriad of flourescent colors that enhance otherwise mustard brown bile.

A continuous regimen of anti-nausea drugs has kept the cycloptic puker at bay.

My "birthday" (the day I received the cells from my donor) was at 1:00 a.m. on Wednesday, December 10, 2009. I knew ahead of time that my donor was a 22 year old male. I was worried for quite a while that he would share things in common with my 22 year old son --- particularly a love for independent punk music. Well, the cellls were flown in from Germany, so my taste for music might lean a little more toward techno and my beer of choice may go from a good old red beer to some "dark lager."

One of my coping mechanisms is to visualize with games. When I was having the chemo, I was playing pac man. The chemo were the little men chomping up all my bad cells. Now I am playing tetris where I watch as all the bone marrow building blocks fit down into my bones to settle as a well-functioning puzzle. I also visualize that those cells are giving my body the wherewithall to leave this experience looking like Heidi Klum. The mind can be a dangerous thing,

All in all things are going well. My biggest complaint is being tired. I kept saying I would need a nice, long rest after the election and so it seems I am in the place to get it.

As always, thank you all for your positive thoughts, prayers, and good vibrations. Knowing you are out there pulling for me helps me keep my mission at the forefront of my mind.

Over the River and Through the Woods

2008-12-02T16:27:00.000-08:00

Thanksgiving has come and gone. Dylan has been put on an airplane bound for Minneapolis. And I have checked in to Presbyterian/St. Luke's Hospital in Denver. Yesterday was a long . . . and hungry . . . day. No food or drink from midnight on Sunday until nearly 6:00 last night. That was a requirement for the medications used during the installation of a three-lumen catheter in the upper right side of my chest. The procedure began at about 3:00 in the afternoon and I was in my room on the third floor by a little after 4:00 p.m.

Several shots of lidocaine were administered prior to making the incision(s) necessary to install the gizmo. By 8:00 last night, it had still not worn off completely. It was a lot like having one side of your face numb after going to the dentist for a filling. Only this was my right boob that was dead weight and dragging the floor.

At 6:00 this morning, I received my first dose of the first chemotherapy drug. It is called "busulfan" and I will receive it every 6 hours for the first four days. As with my other experiences with chemo, I have tolerated this rather well.

At about 3:15 this afternoon I was surprised by a spinal tap or lumbar puncture. The purpose was to make absolutely certain there were no leukemia cells in my spinal fluid. A dose of some type of chemo (methadexadrone, maybe) was given as a prophylactic measure. If any bad cells still persist, more of that medication will be administered.

The one big plus of being here is that the food is soooo much better than at CRMC in Cheyenne. I have had chicken, fish, and even liver and oinions and each of them was actually good. As far as the liver an onions, it was not a standard meal today at lunch, it was the chef's selection and I had to specifically ask for it. Yes, I am one of the few people in the world that LIKES liver and onions. It was not as good as what my husband cooks, but it was more than acceptable.

The staff here, like at CRMC, is very friendly, caring, and good at their jobs. I miss my 8th floor angels (Kim, Heather, Angela, Cat, Stephanie, Mary, Jackson, and the rest) but I know I am in good hands here as well. All of the docs so far have been male, so Dr. Batezini's reputation as the most beautiful female oncologist is still intact.

Let the Games Begin!

2008-11-13T03:55:00.000-08:00

The election is over. Had a recount. Might have a challenge filed. Fabulous turnout (103%). Anyone freaking out over that stat? It's totally real because Wyoming is one of about eight states that allows election day voter registration.

So, now on to the next chapter in life . . . stem cell transplant. I received word yesterday that I will be admitted to Presbyterian/St. Luke's Hospital in mid-town Denver on November 30 or December 1. Approximately 7 or 8 days later, I will receive the stem cells from my donor. I know nothing about him other than he, too, ate dirt as a kid. Apparently there is some virus that is commonly found in dirt and I needed a donor who had also had that virus, so I am fortunate there are still people in the world who weren't carefully watched as children.

At first blush, the 30th of November seems a long way into the future, but I have to focus on the reality that I have only 13 days to accomplish a long list of back-burnered "to dos." Like cleaning out those closets that have been on that list for at least 5 years . . . filing all the bills from the early 1990s that have been cluttering up my home office . . . ironing all the items that have been hanging on my gas pipe in the basement for at least 3 years . . .

Seriously, it's not QUITE that bad, but bad enough. I have been at the office every day for the past four weeks, so there really is a lot of deferred cleaning, laundry and ironing to get caught up. Husband Steve, bless his heart, has done a fairly good job of keeping the top layer of dust from building up too much and has cooked some wonderful meals during these past weeks. I wuold like to smuggle him into the hospital as my personal chef, but I'm pretty sure that will not be possible.

I will find out what all will be possible next Wednesday. I am scheduled to have my final consultation and consent meting with Dr. Rifkin. I think at that time I get a tour of the isolation area at the hospital and find out their do's and don'ts. I just wonder if they are ready for my list of do's and don'ts . . . like do feed me decent food . . . don't wake me up at 2:00 a.m. just to take my blood pressure and temperature . . . do let me have my computer . . . don't interrupt a telephone meeting just to ask how "we" are doing . . . and above all else, DON'T TREAT ME LIKE AN INVALID!

I am woman, hear me roar.

The Twilight Zone Draws Nearer

2008-11-04T01:23:00.000-08:00

Election Day is finally here. It's almost 2:30 in the AM and I haven't been able to sleep for the last two hours, so I said to myself, "Self, get on up and do something constructive." Instead, I decided to post a little update.

A couple of weeks ago I underwent all the necessary pre-transplant tests and all was well except my thyroid. I guess it's a little sluggish. (AHA! So there is a reason I have an a$$ the size of Texas!) So far, two potential donors have been tested and eliminated for not having had some particular virus. BUT . . . yesterday I received the email that the donor they "have been looking for" has been found.

The potential dates for the actual stem cell transplant are November 24, December 1, or December 8. The part of me that has been working 10 hours a day during the week and several hours on the wekends for the past several weeks is thinking the sooner, the better . . . I need a nice, long rest. The part of me that wants all the ironing caught up, Christmas presents bought and wrapped, and the house detail cleaned is thinking WHOA! . . . too soon.

I thank the good Lord for giving me these past 10 or 11 months during which I have been able to return to life as it was before leukemia. And I pray to Him to give me the strength to get through the next few months with dignity and courage. But, most of all, I beg the election gods for no recounts, no challenges, no equipment failures, no voters with black helicopters circling their heads and most of all, to be in bed by 11:00 tonight.

I hope all who read this get out and vote today.

Getting Ready for the Second Go 'Round

2008-09-09T01:48:00.000-07:00

Have the last six months been the dream or the reality? With the exception of the routine blood tests and periodic bone marrow biopsies, life has seemed almost normal. I get up, get ready, go to work. I come home, eat, and go to bed. Can anything be better than that?

Actually, life has been pretty darned good. There have been lots of family gatherings with the children and grandchildren as well as extended family. The young adventurer, Dylan, even returned from Minneapolis for a couple of weeks this summer. His visit was a true joy with the exception of what he left behind. Dylan --- exactly WHO spilled the mocha, java, moo latte, with extra whipped cream or whatever in the back seat of my vehicle? Would the words "drive the wreck or walk" get your attention for your next visit?

The future, I'm afraid, is not so rosy. My last two biopsies have turned up a new condition, myelodysplasia syndrome --- not quite as nasty as the acute myeologenous leukemia, but nasty enough that I am facing a stem cell transplant. The truly ugly part is that it looks as though the stem cells will have to come from an unrelated donor. Not that I mind getting an infusion of stem cells from a 40ish red blooded American male, it's just that the possible complications are greater than with a transplant of one's own stem cells.

Nothing will get too far underway until after November 4th. I absolutely MUST be able to stay the course at work and complete my duties as chief election officer for the County. The upcoming election is too important and will be too exciting to sit it out in a drafty hospital gown while reclining in a less than Temperpedic bed surfing limited cable channels.

If there is anyone out there in the blue nowhere who still reads this, I will try to be more faithful about writing in the coming weeks and I will make sure I use this as a means to keep friends and loved ones posted about the transplant process and progress.

Good News and Bad News

2008-03-07T05:31:00.000-08:00

One should never have to start their week by going to see a doctor, especially an oncologist. But, sometimes one just doesn't have a choice.

My week started with good news and bad news. The good news was really good and the bad news was just sort of discouraging. The leukemia is still in remission with no apparent signs of relapse. That's the good news. My bone marrow still has not started to produce effectively, so I am neutropenic and anemic again.

Neutropenic means being really, really careful that I don't get any type of infection or start running a neutropenic fever. It also means no fresh fruits or vegetables again. Oh,yeah, and still no raw eggs! Damn, I miss those eggs!

Worst of all, it means running around with a mask on and looking like some sort of thief or fool. But the other option is going back on house arrest and since I just barely have started to get back into the routine of the job I love, I have chosen the mask. If I am going to have to wear it for long, I need to devise something more stylish than the regulation hospital pale blue fan fold jobby-do.

I also need to stay the course at the office, because everyone else is falling apart. My right hand, the indispensable Valerie, is playing nursemaid to her husband who just had his second knee replacement in about three months and my Chief Deputy, Rhonda, finally went to have a bunion removed from her foot, only to find out that she also had no joint in her big toe. Yesterday they put in plates and screws on top of removing the bunion. I expect she will become very good friends with her percocet over the next few days and I doubt she will be rolling in with her little leg cart for at least a week.

Well, it's time to get ready to head to the office. At least it's Friday, which means I can wear jeans and I don't have to try to stuff my enlarged bottom into suit pants today. Thank goodness for small delights! And thank God for the big ones!

And there will be one child born in this world to carry on

2008-03-03T04:58:00.000-08:00

On Monday, February 25th, the newest member of our family came into the world. Her name is Madeline Savina Fleenor and she is the cutest, chubbiest, sweetheart of a baby girl. Of course, she looks more like a month old baby than a newborn. Perhaps that's because she weighed in at 9 pounds, 7.3 ounces and was 21" long. She now holds the record for all our babies. Her daddy was close at 9 pounds, 6.5 ounces. Her brother Jameson is enthralled with his "Banana Girl" which is the name he gave her months ago when he found out he was having a baby sister. As his mother got ready to leave for the hospital, he asked if after Banana Girl got out of her stomach, would she be putting Banana Boy in? I guess he still wants a baby brother.

I go see the beautiful Dr. Batezini this morning. It's been about a month since I had my last bone marrow biopsy, so I expect today I will finally get the results and the appointment is not just so I can check out her shoes!

Everything has been going so well, I almost dread this appointment this morning. I am slowly getting a little more energy back. I can go all day without feeling like I'm going to keel over if I don't get a nap. I can stay up past 7:00 p.m. on occasion. I'm back to getting up in the morning between 4:00 and 5:00. I even have all my Christmas decorations down and packed away and there were times when I felt GOOD that I still had a piece or two lingering until Independence Day!

I need to be given a clean bill of health today so I can help the elections staff get ready for the May 6th specific purpose optional tax election and then it's on to the primary and general. Those are the days that I have to be at the office putting on the first pot of coffee no later than 5:45 a.m. Of course, there was that one time that I raced into the office at about 6:15 a.m. without a shower, no makeup, and hair looking like a spent dish rag because I forgot to set my alarm. There's still plenty of talk about that in the office.

I hope anyone and everyone who reads this on occasion is doing well and finding the new year treating them right. I want to again thank everyone for their concern, prayers, and good thoughts during these past several months. I know in my heart that it was because of all of you that I am still kicking today!

The Goose is Getting Fat . . . And So Am I

2007-12-17T16:48:00.000-08:00

I just logged on to do an update and I almost forgot how to do this whole blog thing; it's been that long since I last posted anything. Since then (October 2), I have been in and out, up and down, around and about.

I finished the whole in the hopsital, out of the hospital, back in the hospital bit with the second round of consolidation chemotherapy by mid-October. I went back to the Rocky Mountain Cancer Center on October 18th at which time Dr. Rifkin decided NOT to do the autologous stem cell transplant, but for me just to continue with consolidation chemotherapy. I asked about stem cell harvesting and he said I stole his thunder (not those exact words) as he was going to discuss that as an option. We decided that --- if the insurance company would cover the costs --- I would have my stem cells harvested and frozen for use in the event the AML returns in the future.

Of course, my family said insurance be da**ed, I would have the stem cell harvest even if everyone had to sell all their worldly posessions and live in tents and get around on Shoedebakers (what my father used to tell me to use when I would ask to drive the car). Well, the insurance came through and in mid November I spent two days having the stem cells harvested. It wasn't a big deal. The patient (me in this case, ha - ha) has a big a** needle stuck in their arm with tubing that goes to a really big Willie Wonka type machine. Another IV needle is in the patient's other hand and the blood that goes through the machine is returned to the body. After five hours, you get to move, go to the bathroom and get something to eat.

It took two days to harvest a little over 6 million stem cells. All we needed was 5 million, but heck, while you're hooked up, you might as well go the distance.

I had one day in between the stem cell harvest and going back into Cheyenne Regional for round three of the consolidation chemo. That started on the Friday before Thanksgiving and I was released on the Wednesday before Thanksgiving. I would like you all to believe that I got out of the hospital on Wednesday and cooked the big, traditional turkey dinner the next day, but the truth is my daughter and son-in-law did the dinner this year and they did a terrific job. They may even have worked themselves into a permanent gig.

The following week was spent going to the Ambulatory Infusion Center every day and four out of the five days, I had either blood or platelet transfusions. The Infusion Center is staffed with three of the kindest, most wonderful people, so I really enjoy going to see them. What I try to do is get there early so I get to call the shots on what happens in the room. You see there are two to four patient chairs in each room and one television set and one remote control. If you are not the first one in the room, you might end up watching five hours of a Cops marathon on Spike TV or black and white Loretta Young movies on AMC.

I was cleared to return to work the following week and, as usual, it was great to be back in the office surrounded by the people who make my days full of fun and challenge. I don't know what I would do without those breaks in the treatment routine when I am helped more by the laughter than with the drugs.

Last Thursday, my husband and I went to Minneapolis to give Dylan one last "mommy move." He was living in a really bad part of town (hookerville and drug deal plaza) with two girls. One of the girls is going to Ireland for the MCAD study abroad program next semester and she cancelled the lease on the apartment. It was bad timing, but OK in the long run. He now has a studio apartment by himself which is just three blocks from his campus. He only got to spend one night in it before coming home with us for the holidays, but he said it was wonderful to have his very own space.

So, let's see, there's what . . . seven days left until Christmas? Oh, that's plenty of time --- I just have to shop for presents, wrap the presents, bake some cookies, make some fudge, go to a wedding, and cook a big dinner. It will all get done and I'll have the best Christmas ever with my family and I will go back to the hospital on the 27th for the final round of chemo. I will probably get out on New Year's Day.

Yes sireee, 2008 is going to be GREAT!

Wonderfully Boring Days Ahead, I Hope

2007-10-02T06:37:00.000-07:00

Last Saturday I was released from the hospital to start the routine days of blood tests and doctor's visits. Yesterday I worked in the afternoon and I hope to get several days in at the office this week before having to go back to the hospital for transfusions or into isolation.

Doctor Batezini is starting the neupogen shots earlier this time. That medication boosts white cell production, so I may not have to be isolated again or have all my fruits, vegetables and raw eggs locked away and kept under guard. Truth be told, I still haven't acquired a taste for raw egg shakes; I guess I'm just not up to the strength standards of Rocky.

I am at the point where I don't know what reality is any more. It's just weird to bounce back and forth between patient status and normal person status. It's just very nice at this point to look forward to a few days of being out and about and not having to drag around an IV pole with swinging bags of fluid.

I'm The Happiest Girl In The Whole USA

2007-09-27T18:03:00.000-07:00

I used to make fun of this Donna Fargo song when I was in high school. I would hold my nose and sing along in a horrible nasal tone, "Shine on me sunshine, walk with me world, it's a skip-da-de-do-da day. I'm the happiest girrrl in the whole USA."

Today the words to this sappy song have true meaning for me. I got the results of my FISH panel from the bone marrow biopsy and my wanky chromosome damage has been reversed. No more trisomy 11. So, the stem cell transplant can proceed.

I should be Denver bound in a few weeks. I will probably be down there through the holidays, but I can't think of a better Christmas present than a chance to share Christmases in future years with my family which will soon include a new granddaughter. My son informed me today that their baby which is due on February 29 (not too thrilled with a leap year baby, but. . . ) is a girl. I asked him to name her Maristella after my oncologist. He didn't jump on the idea, but I have a few months to work on him.

As you can see, all your prayers, positive thoughts, and moral support have paid off and I can't thank all of you enough!

So, Here We Go Again

2007-09-26T10:09:00.000-07:00

I am now back in the hospital for round two of consolidation chemotherapy. I was admitted on Monday of this week after having three wonderful weeks of freedom during which I was able to work my normal days of 8:15 ish or so to 5:30 ish or so. I even got to go to Casper last week for the annual Wyoming Association of County Officers convention and fulfill my duties as president.

I had a great time seeing all the clerks from around the state, but didn't have enough energy to really enjoy the social times. I expect to be full of energy the next time we meet, though.

I had a bone marrow biopsy last Friday and the preliminary results are great. The beautiful Dr. Batezini told me there were ZERO blasts in my bone marrow. Not 1% or 2%, but ZERO. A difficult concept for me to grasp. We are waiting on the results of the FISH panel to see if the chromosomal damage (trisomy 11) has been corrected. If so, the next phase of treatment will be in Denver and consist of an autologous stem cell transplant. We should know something in the next 9 days.

Sorry for the Silence

2007-08-23T07:17:00.000-07:00

I know it has been a month since I last posted anything. It's been a crazy, busy, eventful month. I was home for almost three weeks during which time my sister came from Las Vegas and I spent time with Dylan, Rayme, Jake and the grandkids. We had lots of impromptu dinners and even found time to celebrate all the August birthdays (mine, Rayme's, my youngest grandson's, Jake's and Steve's).

I worked some during that time, too. Not as much as I would have liked, but any time in the office has such a wonderful healing effect for me. I need the mental challenge of the work and to share laughter with all the fine people in the office.

On August 11th I drove Dylan back to DIA and sent him on his way back to school in Minneapolis. We both went through a rough period of withdrawal because we had spent so much wonderful time together during those first few days I was out of the hopsital. On Augsut 13th, I was back in the hospital for consolidation chemotherapy. This lasted a week and I did very well. In fact, here it is almost a week later and I have not returned to the hospital with an infection as my oncologist predicted. I am, however, on "house arrest." I can't go to the office or out in public --- except to the doctor's office --- until my white count comes back up. It was .8 yesterday.

My two brothers were recently tested to see if either of them was a match for a bone marrow transplant. I received the results a couple of days ago, and neither of them is a match. I guess we now go out to the national donor database to see if we can find a match. In the meantime, I will have to have chemo once a month until either they find a match or we complete three more courses of consolidation chemo.

The hardest part of all of this is to give in to the fact that I am not in control. Dr. Batezini had to remind me again the other day that I am not in control and she is not in control ---- my bone marrow is calling the shots. Well, it had better start listening to me because I just can't stand all this inactivity much longer so it needs to just straighten up and fly right! Anybody think my marrow reads this blog? Ha!

The next few days will be spent getting blood tests to determine if blood and/or platelet transfusions will be necessary. With luck, I will avoid that and be back to work on Monday, if only for partial days for a while. And with even more luck, I will convince Dr. B to wait on the next session of consolidation chemo until after WACO in September.

I want to say tahnk you for all the wonderful comments, emails, cards and encouraging thoughts. I t is extremely humbling to learn how many people are praying for my recovery.

Going Home!

2007-07-23T16:45:00.000-07:00

Well, it looks like I'll be headed home on Wednesday. Now, for those of you who read this and are not from Cheyenne, Wednesday is a special day. It's the only Wednesday of Cheyenne Frontier Days and it has been set aside as Cheyenne Day. A couple things happen on that day . . . the Thunderbirds put on their air show in the morning and all the locals cram into the more popular bars in the afternoon/evening where they will see people they only see that one day every year. (Should I mention I met my husband on Cheyenne Day in 1983?)

So, is there anything bad about getting out of here on Cheyenne Day? First, I have an outstanding view to watch the Thunderbirds, so I might miss that. Second, I don't have the strength to fight the crowds at the local bars. Of course, I don't even know which bars are the current favorites and those planes do the same tricks year after year, so . . . NO! there is nothing bad about going home on Wednesday.

But, there is lots of good. I can eat fresh fruits and vegetables. I can sleep in my own bed . . . well, maybe. I might be sent off to the guest room until my husband gets used to waking up and seeing a bald wife. I can get fresh ice water whenever I want. I won't be listening to the beep, beep of an occluded IV line. Nobody will be coming into my room at 4:00 in the morning to stick a needle in my arm. Oh, yeah, it's going to be heaven.

They will take me off all the intravenous meds tomorrow morning and provided I do OK for 24 hours, I'll be headed home. The IV meds right now include two antibiotics (cefepime and vancomycin) and neupogen which is for building up my white blood cells. The vanco and neupogen have wreaked havoc with me since they started me on them a few days ago. Lots of headaches, nausea, and joint pain. Needless to say, they can't quit those too soon.

For the first few days, I am going to just relish being in my own home and then I'll probably pay a visit to the office. I will keep using this blog to post updates on my future treatment. Again, thank you all for your words of encouragement, your prayers, and just all the positive energy you were sending my way during the past 6 weeks.

No Pain, No Gain

2007-07-19T13:22:00.000-07:00

On Tuesday I had my bone marrow biopsy to see how well the second round of induction chemotherapy had worked. They started me off with a little demerol, but did not add the concious sedation this time. And, I now know that was the more important ingredient of that little cocktail.

Because they didn't have a long enough needle, the local anesthetic did not get completely into my bone. Suffice it to say, it was one painful test. But well worth it.

Today I received the initial results which showed I have less than 2% leukemic cells in my bone marrow, making it possible to declare me in complete remission!

By sometime next week, if my marrow has started to produce enough red and white cells and enough platelets, I get to go home. Then it's back down to Denver for a consultation with Dr. Rifkin at the Rocky Mountain Cancer Center before beginning consolidation chemotherapy.

I know there is still a long way to go, but it feels fantastic to make it past this first giant hurdle.

Contraband!

2007-07-13T12:38:00.000-07:00

Anyone who has been confined to the hospital for even more than a few days will most likely at some point HAVE to talk about the food. It's not likely that you will hear from many patients about how GOOD the food is, either.

Around here, they have a selection of seven main entrees. You have your baked fish, baked chicken, dry roast beef, drier yet roast pork, soggy roast turkey, spaghetti with runny meat sauce, and coagulated macaroni and cheese with overcooked broccoli. Because I am on a pathogen free diet, I don't get offered any fresh fruits or fresh salads. Now, all of those who know me well, know I would much rather eat a big, healthy fresh salad than a quarter pounder with cheese any day, RIGHT? OK, maybe not before this, but today I would cross a polluted river barefoot if I could have fresh food when I reached the other side.

Well, today my sister-in-law Gwen got me the next best thing. An order of french fries! They came from the hospital grille and they are just those generic crinkled frozen potatoes, but with enough ketchup, did they ever taste good!

When I first got admitted, I counted the hours between the meals just as a way to make time pass; now, I count the hours between meals with dread at what I might be asked to choke down next. In the meantime, I have to have my tv remote very close by so I can change the channel quickly when commercials for Olive Garden, Red Lobster, The Outback, etc. come on. And I have to be extremely careful that I don't stop channel surfing on the Food Network.

My energy level is increasing each day since the second round of chemo finished on Tuesday. I was even able to go for a short bike ride this morning. It's true! I have a set of portable pedals and I rode for about 15 minutes this morning. There is a mural of a moutain meadow on one wall and I can stare at that and imagine I'm out for an early morning ride, surrounded by the fragrance of the pines and the ponds.

And, I want to share some personal good news. My oldest son and his wife are going to make me a grandmother for the fourth time in aoubt 7 months.

These Little Piggies Ain't Going Nowhere

2007-07-08T15:23:00.000-07:00

Well, I've come full circle. With nearly 150 ml of fluid being pumped into my system 24 hours a day, my feet and legs are now even larger than when I first went to the doctor in May. At that time, they were the circumference of good-sized aspen trees; they are now the size of the ancient redwoods. Instead of five toes on each foot, I just have one big, long slanted sausage at the end of my feet and they don't want to bend too easily.

I guess it's a good thing I don't have to go for long walks in the sunshine or up the stairs to the solarium or anywhere farther than the bathroom, for that matter.

We're entering the home stretch of the second go round of chemo. I should finish by noon on Tuesday and then the waiting for the next biopsy starts. I've done really well with this session, too. No fevers, only one blood transfusion, and no platelet transfusions, yet. That may all change in the days following completion of the chemo, but for now, I'll take it all as blessings from above.

Somedays I can't get my computer to connect to the internet or to the County intranet and those are the times I feel isolated. It is just good to be able to read emails, even though I may not always have the gumption to respond, and to read the comments many of you are leaving on this blog. All your good wishes cheer my soul and help each day pass more quickly. Thank you all.

Road Trip

2007-07-04T09:30:00.000-07:00

Monday I got out of this room for the first time in more than two weeks. I traveled through the tower into the old part of the hospital and down to radiology on the first floor. The nurse pushing my chariot said the trip was too short to bring any road food. I was sorely disappointed --- I was looking forward to at least a bag of cheetos for this big adventure.

They did the MUGA heart function test and the results showed only a 2% differential in function from the first go round of induction chemotherapy, so we are repeating the exact same treatment regimen. I finished the first bags this morning at around 5:00. I still feel pretty good. I have no nausea, no pain, and I have decent energy --- enough to get around the room and take care of myself without any assistance from the nurses.

During the first week of chemo, they were doing the daily blood draws from my picc line, so I didn't get a needle in the arm every day. Apparently that was not what my doctor wanted and so now I get a needle draw every morning between 4:00 and 5:00. Needless to say, I don't have to rely on an alarm clock --- that poke in the arm pretty much brings me to full conciousness.

The hair is starting to go. I'm not totally bald, yet, but each day more and more hair is left in the bottom of the shower in the morning and in my sleep cap at night. The sleep cap is something I resorted to to keep the hair off my pillow and out of my face at night. Before I put it on, I spent one night with my face covered in hair. I'm pretty sure I looked a lot like Joe-Joe the Dog Faced Boy from the circus.

It's kind of exciting to think that for the next several months at least, I can be anything I want . . . a blonde one day, red head the next.

Finally, Results!

2007-06-30T16:00:00.000-07:00

I spent the entire day yesterday waiting for results from Thursday's bone marrow biopsy. I did see my oncologist briefly yesterday afteroon at which point all she could tell me was that the results were inconclusive until a "count" of the circulating blast cells had been done. As of about 1:30 yesterday afternoon, she anticipated that taking a couple of hours.

Well, around 2:00 this afternoon, I got the results. There are still 20% ciruclating blasts in my marrow. That percentage needs to be less that 5% to be considered in remission and to move to the consolodation phase of chemotherapy. So . . . we start all over with induction chemo.

First, I have to have a heart function xray to determine whether or not the first round of induction chemo did any heart damage. If it did, a different treatment regime will be used. If not, we will repeat the 24/7 of the ARA-C with Idirubicin included during the first three days.

Regardless, it means at least another three weeks in the hospital and the potential for lots more transfusions than I've needed thus far.

While this wasn't the news I had hoped for, it is what it is. So, we go again and this time, I'm not playing around!

Emergency Sirens on Drugs

2007-06-28T18:14:00.000-07:00

Vicodin, oxycoden, demerol, tylenol with coedine . . . any of these words just make me fall immediately into a deep, drug-induced slumber. Combine demerol with a new drug designed to make a patient forget any unpleasant procedure, and I might not wake up for a week. That is unless the emergency warning sirens go off.

The scene: me laying peacefully in my cozy hospital bed in a drug induced stupor, hooked up by electrodes to a portable heart cart, oxgen cannula up my nose, oximeter clamp on one finger, blood pressure cuff around one elbow, and an IV line in a pic in the other elbow. Somewhere deep in the recesses of my semi-conciousness, I hear sirens. Thinking I'm dreaming, I decide to dream that I'm calling my daughter to see if the sirens are really going off. She confirms my dream . . . tornado 11 miles south moving toward Cheyenne.

Now, remember, I'm in the penthouse on the eighth floor, corner room, huge window on the east, identical huge window on the south. So, I'm thinking, "Wow, I'm going to have a great view of this tornado if I can just get out of this bed." While I'm sitting there debating about whether or not I can start unplugging myself from all of this equipment, a nurse rushes in and starts unhooking me, throws a mask on my face, and herds me out to the hallway with the rest of the patients. Of course, I can't stay out there with all of them because of my isolation status, so I get the priviledge of haning out in the nurses break room where I got to watch the breaking news reports on tv.

All in all, the excitement was a welcome diversion, but it sure did ruin a good nap.

Tests You Just Can't Study For

2007-06-28T06:01:00.000-07:00

I never thought I would see the day that I would lose sleep from being excited about taking a test ---- especially one involving very long needles. Even though I now know what a bone marrow biopsy involves, I can't wait for my beautiful Brazilian oncologist to worm and work her needles into my hip bone. Because until we pass this hurdle, I won't know what the next few weeks will bring. The test is scheduled for this afternoon and I am supposed to know the results tomorrow.

But, let me tell you about my oncologist. She is absolutely gorgeous! She is tall, perfect figure, long black perfect hair, wonderful accent, and the one thing others in the profession say about her is she is smart. What I like best is her sense of fashion. The woman wears the most wonderful shoes! And they are always high heels or high wedges. Even the day she did my first bone marrow biopsy, she did it in 3 inch heels. Could there be anything NOT to trust when you have someone like this providing your care? I think not.

I guess I'll go look for my breakfast tray. They leave it outside the door and if I don't go get it, it sits out there until one of the CNAs decides to bring it in the room. Sort of makes me feel like a caged animal. Oh, that's right . . . I am a caged animal. Hopefully not for much longer.

Good Days, Bad Days

2007-06-26T17:10:00.000-07:00

Overall, I think I am doing very well. Saturday was a rough day as an infection settled in and I started running a fever. IV antibiotics seem to be working to control it. Saturday was also my first episode of nausea. While that was short-lived, my appetite did leave me for a few days. I tried to escape from this 8th floor room to go look for it, but couldn't get my IV pole past the front desk.

My blood counts bottomed out yesterday, so last night I received my first blood transfusion and this morning I received platelets. For the first time in three days, I wasn't tempted once to curl up in a blanket and drift in and out of conciousness. In fact, I even called the office a couple of times, but there weren't any real crises, so I tried to focus on some WACO work.

For the next two days, my mission is to hang out, not spike a fever, eat as much of whatever food is put in front of me as possible and await Thursday's bone marrow biopsy. From what I've been told, the results of that will determine what will happen in the coming few weeks. I appreciate so very much everyone's prayers and positive thoughts as the end of the week approaches.

Fat Feet to Leukemia

2007-06-22T10:34:00.000-07:00

So, how do you go from swollen feet and ankles to AML? You are very, very lucky. I have not had a regular physican for a number of years. In fact, I am the last to seek medical attention even for bronchitis, pneumonia, etc. But I had promised, so the following Thursday I picked up the phone and called a local family care office where both of my married children take their children.

A wonderful young Dr. listened to my complaints and patiently spoke to me about "elderly edema" and prescribed a diuretic and ordered routine bloodwork to get a base line on the potassiam. Twelve days later I had my first bone marrow biopsy --- one week after that, initial diagnosis --- four days later diagnoses confirmed in Denver ----- and three days later (6/14/07) admitted to the hospital.

A week has now passed and I am amazed. This morning I just finished a round of chemotherapy that ran 24/7 since check in. I have had no nausea, no pain, still have my hair (oh, yeah, still thin and ugly, but MINE). I feel a little tired from time to time, but I still feel like I could and should be at the office finishing up the budget, at home mowing the lawn, and helping care for my grandchildren.

For me things have been going better than expected, but not so for my youngest son. From 1000 miles away, I had to tell him about my illness over the phone. It tore me apart not to be able to put my arms around him and assure him things would be fne. Three days later his less than a year old laptop was stolen while he was at work using it! For a 20 year old that was like having your entire connection to the outside world taken away. But . . . it got worse for him.

Three days later some of his best friends from Cheyenne made it to Minneapolis at a time when he needed them most. The plan was that their band would play with some of the better local talent. They were all pumped only to be devasted a few hours before they were to play when they discovered their vehicle and all their instruments had been stolen.

Fortunately, their encounter had to be with some of Minneapolis's dumbest criminals who did not take the Wyoming plates off the vehicle, so it was recovered on Saturday. The instruments were not with the vehicle, but the thieves still were --- eating at a White Castle less than a dozen blocks from where they took the vehicle. The instruments have been recovered and now we await how to reunite them with my favorite muscial sons from Cheyenne.

Bad enough, so far? Well . . . not done yet! His friends took off to return to Cheyenne last Saturday and he was lonely, but I didn't think alone because I know he has friends there. The question in my mind was where were they this past Monday? Dylan parked his car too close to a fire hydrant and was towed to an impound lot several miles from his apartment. He tried to find someone to drive him to the lot or ride the bus with him to the lot, but noone could or would. I know he didn't want to dump on me, but I'm glad he did. He took a taxi and got the car back.

In two weeks his summer class will be done and he can come home for a few weeks. And I expect to have at least one backyard cook out with me doing the eating . . . 7 bags of chemo, and I still don't cook. There are just some things I hope don't change.

Strep Throat

2007-06-19T18:59:00.000-07:00

On May 9th, I was to travel to Minneapolis with my oldest son, Jake, to move my youngest son, Dylan, from an apartment on his college campus (Minneapolis College of Art and Design) to an apartment closer to downtown.

The weekend before, I came down with a vicious case of burning throat which was bad enough to make me WANT to seek medical attention. So, on Monday I trotted myself down to the emergent care center and was diagnosed with strep throat. I ended up missing work on Monday and Teusday , but I made the plane on Wednesday and proceeded to spend the next three days packing, cleaning, and hauling belongings between a garden apartment and a second story apartment; and in my own eyes, at least, I never faultered.

I returned to Cheyenne on Mother's Day to join my husband's family for dinner at his sister Gwen's. Now , Gwen is one of God's best creations and has a medical background to boot, so when she and my mother-in-law, Wilma, noticed my swollen feet and legs and told me to get to a doctor, I did.

My next post will tell of how I went from fat feet to acute meyloid leukemia in under a month.

And so it began . . .

2007-06-19T18:51:00.000-07:00

This is going to be my first attempt to put into words the happenings of the past couple of months and how I ended up as a guest of the largest regional medical center in the state of Wyoming.

From here on out, I hope this will provide a means for friends, family, and co-workers to get some regular updates on my progress.