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

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

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

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

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

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!

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

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!

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

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

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!

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

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

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

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

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

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 . . .

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.