Living with Acute Myelogenous Leukemia as Told by my Mom

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This is a straight-up “copy & paste” (with just minor formatting) from the site “Purple Plum’s Cyber Puddle,” last updated by my mother, Denise (or affectionately nicknamed “Pie”), in September of 1998.

This is my mom’s account of living with Acute Myelogenous Leukemia (AML) story — her “AML Adventure” — in her own words.


On the 11th of April, 1998, I wasn’t feeling well.

It was the day before Easter and I tried to ignore it all day because we had plans to go to my brother’s and sister-in-law’s for Easter Dinner the next day.

About 8pm, I called my doctor and left a message with the answering service for his ‘stand in’ to call me back. He returned my call quickly and we talked over 30 minutes asking me questions about how I have been feeling, etc. He advised me to go to the ER.

I told him that I didn’t really feel that bad, and had felt worse before calling the doctor.

He said to go to the ER.

So, I got to the ER about 10pm and they did some tests to check for pneumonia and for mononucleosis.

All the tests were negative.

But my white blood cell count was really high.

They admitted me to the hospital.

I continued to have blood draws and various other tests to try to determine what was going on.

On Wednesday, the 15th, my doctor told me he was going to have a ‘blood doctor’ called in to see if he could determine what was going on with me since everything that he had done had not given them an answer.

So, the ‘blood doctor’ came in the next day…..a hematologist/oncologist.

I nearly went through the roof! Silly me hadn’t realized that my doctor had told me ‘blood doctor’ hoping that I wouldn’t connect it with oncology ….  he knows I would have freaked out all night about it! *g*

So he did more blood draws and tests. Also had a bone marrow biopsy done. Not a fun procedure at all!

I also had to have surgery to remove a lymph node in my left neck to biopsy ….it was malignant. 

They told me that I had lymphoma and that the University of Washington pathologists would have to test it all and determine what type of lymphoma to be able to administer the correct treatment (chemotherapy).

Meanwhile, while I was waiting to find out the type….I had a kajillion tests and CT Scans done. They also found a 9 cm tumor in my lower abdomen. Later tests, showed it to be benign. I had tests to see about my kidneys and heart and liver.  My lungs were checked.

On the 23rd of April, my oncologist came in looking ‘weird’.

I knew he had some news. He took my hand and told me that he had received some news this evening that he didn’t like.

I said that if he didn’t like it, I surely wouldn’t either.

He shook his head.

That is when he told me that it wasn’t lymphoma, it was leukemia and was a very aggressive , fast paced type of leukemia. Acute Myelogenic Leukemia (AML).

I fell apart.

The doctor stayed with me for a little while and gave me some information. Like they will be sending me to the University of Washington in Seattle the next day to begin chemotherapy ASAP.

When he left he had one of my nurses come in and sit with me and talk with me. Asked if there was any one that I wanted her to call. I told her that I would wait for my Mom to get here this evening and tell her then…

Well, Mom ending up calling within 15 minutes or so and so the nurse told her on the phone for me. Then my brother, Darren, called from California to see how I was doing about an hour later, and I told him.

Well, when Mom got there with the kids and my friend, Stacey, my pastor also was there and some others.

So they all sort of got told and talked with the nurses and all.

My brother, Dusty, was called and he and his wife,Debbie,  came to pick me up the next morning early to go to the UW… where they were expecting me.

I was settled into a room and they started some testing right away.  Blood tests and hooked up hydration fluids through my Groshang Catheter that had been inserted at the previous hospital.  I learned that it would have to come out and a Hickman Catheter inserted instead. 

The Hickman was inserted on the 5th of May. 

I was on Ara-C for 7 days & another drug I cannot recall right now for 3 days. 

I had severe mucositis in my mouth that was extremely painful & uncomfortable.  It got to where I couldn’t eat & barely drink.  So they had to put me on TPN…my “food bag”. 

I was on Morphine for the pain.  I had a hard time with that at first, but learned that I needed it, too. 

I had many antibiotics administered throughout the day & night as well.  All the basis were covered to keep infection away from me since my white blood cells had climbed even higher since admission to the UW. 

I had daily blood draws to see what my counts where and we knew when they dropped to 0 and then again when they started to come back up.

I walked as much as I could with ‘buddy’….my IV pole. 

On the 24th of May I was released. 

Mom stayed with me the whole time I was at the hospital….slept in a crummy chair/bed. 

We went to my brother’s and sister-in-law’s in Marysville since I still needed to be fairly close to the UW.  Marysville is about 45 minutes away from UW. 

I went back on the 29th of May for a bone marrow biopsy to confirm that I was still in remission from the induction chemotherapy.  Yes!  I was. 

I just tried to build up some energy and walked some and started eating a little  more.   I never thought I would have a problem with eating!  *lol* 

In June on the 13th, my brother’s Darren and David, flew up from California to spend a couple of days.  They were also going to have their blood drawn to see if either of them were a match for me to be a donor for a bone marrow transplant.  My brothers that live in Washington, Dusty & Douglas, had already been drawn.  It was a nice visit, even under the circumstances.  We hadn’t seen each other in a couple of years. 

On the 18th of June I went back to the UW for a bone marrow biopsy & then was admitted to the hospital for a week of consolidation chemotherapy…the 1st of 4 that they do. 

That time the mucositis wasn’t so bad; it was the nausea & vomiting that attacked me. 

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Oh man!!  That was not fun either. 

I still lost my appetite & nothing tasted good. 

On the 24th of June I was discharged & went back to my brother’s & sister-in-law’s in Marysville to wait for my blood levels to come back up. 

I was highly at risk for infection since my immune system had been literally destroyed by the chemotherapy. 

I went to the UW every other day for blood draws to check my blood levels.  If my platletes were low, they infused platelets.  If my blood count was low, they infused red blood cells.  That happened nearly every other time that we went for quite awhile. 

On July 8th, my Mom’s birthday, we learned that my brother, Darren, was an identical match to be a donor for me. 

We were all so excited. 

To have a match & for it to be identical was God’s blessing. 

My other three brothers were disappointed. 

My doctor had a consultation appointment set up on the 6th of August at the Fred Hutchinson Cancer Research Center in Seattle regarding a transplant. 

Especially now that we had an identical match donor.  They informed me that they would begin the work-up on the 11th & that my donor brother needed to be here by then. 

YIKES! 

We had to get a hold of Darren’s wife, Carol,  to get a hold of Darren who was on a job site in San Diego & get him home & a flight to Seattle by Tuesday morning! 

My brother, Dusty, in Marysville, his mother-in-law, used her frequent flyer miles to get Darren a ticket up here & I picked him up Tuesday morning at Sea-Tac & we went to the Hutch for our appointments/meetings. 

It was a full three days (Tuesday, Wednesday, Thursday, August 11, 12, 13). 

On Thursday, Darren flew back home. 

I had more appointments on Friday to make.  They were very thorough in everything….I mean, EVERYTHING! 

They checked my lungs capabilities, kidneys, liver, pulmonary function, I talked with a psychiatrist, social worker, the team doctors regarding what the transplant will entail & what to expect; oral medicine looked at me (3 root canals & a tooth pulled!); Infectious Diseases talked with me (I was exposed to Tuberculosis 17 years ago & they put me on medications for that ‘just in case’).  Meanwhile, blood is drawn regularly to make sure that you are still in remission & all the right things are doing the right stuff.

I come home during the weekends & spend as much time with my kids as I can. 

Then I have to go back to Marysville to be available for my appointments during the week at the Hutch & UW. 

On the 18th of August, I had a biodistribution test that will administer the radioactive monoclonal antibody into me to see how it distributes.  It is a mouse protein….I pictured these little brown mice running all around inside me…then I see the stuff is actually clear…so I had to change my ‘picture’ to white mice!!  *g* 

I am nutz. 

That took all day for the infusion and GAMA scans they had to do. 

Right when we were ready to leave, I developed an allergic reaction & broke out with a rash on both my arms.  So the study nurse took me over to the After Hours Hutch ER and they monitored me for a couple of hours. 

Got some dinner since I hadn’t been able to eat all day. 

We sent my sister-in-law, Debbie,  home with my niece, Kaylee, since it was going on 7pm now & getting later & she was getting tired.  The study nurse gave us a cab voucher since we didn’t know when they would be releasing me or if they were going to keep me. 

A couple hours later, the rash was gone, no fever & they sent me home.  We took a cab from Seattle to Marysville…..$70.60!  Yikes!

Wednesday, the 19th I felt like I had been hit by a major big truck. 

Muscles hurt everywhere.

I knew this was going to be a side effect of the biodistribution.  But oh boy!  It was a doozie… 

I had more GAMA scans done that morning.  Then we went to the Hutch for a bone marrow biopsy.  We did a couple of classes about nutrition & managing care at home after the transplant. 

On Thursday, the 20th, GAMA scans at the UW again & then to the Hutch for GYN exams & talk about this huge fibroid tumor they had found back in April. 

I was told that if we had enough time, a hysterectomy would be highly recommended.  But since we didn’t & it didn’t seem to be presenting a problem they probably wouldn’t. 

However, during the transplant chemotherapy, there would be some severe pain because of the fibroid & because of the size. 

Well, a CT scan showed that there were, in fact, 3 fibroids.  The one grapefruit sized one & a couple of smaller ones. 

We talked about what the chemotherapy/radiation would do & of course, I would be sterile afterwards.  Was that OK?  Of course, it was with me! 

On Friday, the 21st, we had one appointment at the UW & that was for GAMA scans. 

And then we went back home.  I wanted to see the kids. 

It was to be my last weekend home before beginning the ‘conditioning’ radiation & chemotherapy before the transplant. 

Well, less than 12 hours after getting home, I was on my way back to the After Hours ER because of severe abdominal pains & high fever. 

I was pissed. 

I wanted to stay with the kids & knew that they were going to admit me to the hospital this time. 

They did. 

They immediately started me on IV antibiotics & gave me something for the pain I was in.  It didn’t help. 

Several doctors came in during the next couple of days to examine me & ask questions.  They figured the pain was from the fibroid, but why the fever, too? 

I was on Morphine and Dilaudid by now & neither was doing any help with relieving the pain.  I could hardly move. 

By Monday, the 24th, they decided to stop the transplant work-up & scheduled a hysterectomy for Friday, the 28th. 

I was supposed to start radiation on the 27th.  I was sooooo disappointed. 

I couldn’t take it.  I felt like my life had been put on hold or in limbo or something.  And there was nothing I could do to get it to go again. 

Several of my doctors came in & talked about why this was needed & if we didn’t do it now & went ahead with the transplant, it couldn’t be done for over 12 months after transplant even if it needed to be because of infection & my immune system. 

If the pain was this bad without chemotherapy & the narcotics were not helping, it would be even worse with the chemotherapy. 

So….a total abdominal hysterectomy with bilateral salpingo-oopherectomy was done on the 28th.  I don’t remember much of that day at all….Versad, I think one of the drugs is called…. I liked it!  *g*

Anyway…they had me up & moving around on Saturday, the 29th & again on the 30th. 

My doctor’s assistant came in those 2 days to see me.  She was off that weekend. 

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The nurses wanted to send me home on Sunday, but he said no way, not without my doctor seeing me here first.  So on Monday, the 31st, Dr. Terrie came in & talked with me & told me everything I had heard. …. That it had gone well, the fibroid was huge & so was my uterus & that it took about an hour which wasn’t bad, but it was alot of work. 

She was very comforting. 

She discharged me that morning & everyone started scurrying around to get me out of there!  I had to have the surgical floor discharge me as well as the Hutch discharge me. 

The Hutch really stepped in & took care of alot of things for me….like scheduling appointments that I had to do after discharge & made sure I knew what I could & couldn’t do as well as what medications to take & when. 

I am a regular walking pharmacy nowadays.  *g*

Monday, August 31st, I was home.  DH & Ronnie (my son) came to Swedish Hospital to pick up Mom & me. 

Each day got a little better.  I hurt like hell  & cried alot.  I think at times the chemotherapy was easier than the surgery! 

I was depressed too & that didn’t help any. 

Wednesday, the 2nd of September, the kids went back to school. 

My son, Ronnie, was excited that I was there to see him off …remember he had been told I would be in the hospital at this time….. 

That afternoon, my daughter, Kathrene, had an appointment down below & so my older daughter, Reta, took us to it.  Kathrene was glad that I was able to be here to go with her.  

Thursday, September 3rd,  I had a doctor appointment with my doctor here in town for a blood draw. 

They will fax the results to the Hutch.  That is so I don’t have to make the trip all the way down to Seattle while I am supposed to be recouperating. 

My doctor has never drawn blood from a Hickman line before so, he called the Cancer Center & they gave him written instructions & I helped him with it too. 

It was hysterical!  We did a good job together, though!  *g* 

My friend, Stacey, brought me to my appointment since my husband was gone.  His father had passed away on the 30th & the funeral was today. 

I went down to my friend, Stacey’s, to paint afterwards.  She has been a God send to cart me to & fro her house since I cannot drive right now & enabling me to paint again. 

I have missed her & painting so much. 

Our painting together has been such good therapy for me.  I love you, Stacey. 

On Friday, the 4th, I was going to go back down to Stacey’s but didn’t feel very well, so I stayed home.

Saturday, the 5th of September, Mom drove me & Kathrene & Ronnie to Seattle.  Reta had to work. 

My friend, Denise, & her family were visiting from San Diego, California.  We spent the day there.  We went to dinner at Planet Hollywood which I had never been to.  They go to the one down in San Diego occasionally.  We had a very nice day.

On the way home, Mom stopped outside of Marysville to use the restroom & when we were getting back on the freeway she took a wrong turn…..went the wrong direction on the street & ended up facing oncoming traffic. 

YIKES! 

She eased over the divider, but my van is so low it scrapped & jerked every which way. 

You have to know, too, that this was the first time in quite some time (like a year & a half) that Mom has driven. 

She drove me that night to the Hutch on the 22nd of August, but it was dead of night & barely any traffic. 

So…we stopped at the on ramp to the freeway where a light was & got out to look under the van , but didn’t see anything hanging or dripping or whatever. 

But we decided to drive over to my brother’s house since we were pretty close to have him look at it.  We got there & he looked as best he could in the dark….11:30pm! 

He suggested we just spend the night & he would look at it first thing in the morning.  So I called my house to let them know we wouldn’t be home until tomorrow sometime.

Well, somehow while we were getting my son, Ronnie, out of the van & Kathrene out of the van, an overhead light was punched on & left on all night.  So when Dusty went to check the van out the next morning, the battery was kaphooey. 

Of course!  When it rains it pours! 

So, there didn’t seem to be any damage from the night before.  Just the battery….so he jumped it & told us not to turn it off until we got home….about an hour & half drive. 

So that is what we did. 

Sure enough….we get home, turn it off & it doesn’t start.  So I came in & told my husband & the next day he went & had it replaced.  Especially since I reminded him that we need it for Thursday to get to Seattle again….& I didn’t want to wait until Wednesday to find out it was something other than the battery that needed replacing.  Anyway…..just more adventure….*g*

Sunday after getting home & Monday, I just tried to relax & take it easy. 

It was hard. 

I have gotten very emotional as late. 

I feel sometimes like it has taken me 4 months to get mad or something. 

And I am mad now. 

I am pissed that I have to wait even longer to get things going with the transplant.  But I do know there are reasons for it….it doesn’t make it easier, though. 

Even knowing that the Lord has things in control, doesn’t always make it easier. 

Doesn’t always make me not scared.  

Sunday was the day that Darren would have flown in to start preparation for the transplant. 

It is the day I would have entered the hospital for the IV Chemotherapy…..

Tuesday, the 8th….this would have been a ‘day of rest’ in the hospital after the chemotherapy.  I had an appointment at my doctor’s here in town for a blood draw.  They will fax the results down to the Hutch in Seattle. 

My daughter, Reta, took me down to Stacey’s to paint for a couple of hours when she got off of work while she (Reta) went to visit a friend.  Then she came & picked me up to take me home. 

Stacey & I got alot of painting done. 

We are moving right along on our project.  They are turning out beautifully!   

We both do Decorative Painting (sometimes called Tole Painting)….we like a variety of styles & designs, but are currently working on some Betty Caithness designs….similar to Rufus Porter style. 

It is relaxing & that is what I need right now.

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Wednesday, the 9th…..this is the day that it was supposed to happen…the transplant.  

It would have been the pitts for Darren….once he woke up from the anesthesia, but it would be just like receiving some units of blood for me.  Then the waiting to see if it engrafted……

Anyway….

On the 10th of September, I had appointments at the Hutch and an appointment with the surgeon. 

Everyone says I am ‘coming along just fine’. 

I go back in 2 weeks on the 24th for another checkup.  I had lost another 12 pounds!!  YIKES!  *g* 

I am hoping they will tell me something about when they will reschedule the transplant when I go back on the 24th….we shall see….

Meanwhile, it is wait and heal and make sure that I eat plenty of protein and drink plenty of fluids….. 

Oh!  And I eMail my food sheets to the dietician at the Hutch!  *lol*  Always an excuse to be on here!  *lol*

Mom opened an account at a bank for donations to help with all the things that my insurance does not cover….(ie: transportation, an apartment in Seattle for 3 months after the transplant to be close to the Hutch, living expenses for those months that we are down in Seattle, the $3000.00 worth of dental bills that I have no insurance for, etc).  Any amount would be appreciated ….thank you.


September 24th, 1998:

Mom & I left my house shortly after 8am. We arrived in Seattle a little after 10am at the Hutch. Traffic was nothing & we made excellent time… *sigh*

I had to first have a HAMA blood test drawn to see if I was still HAMA – negative.

If/when I turn positive, I am no longer eligible for the radiation protocol they are wanting to do. It would fry my liver and kill me if we did it & I was positive.

Then I saw a psychologist, Janet, that is helping me with relaxation & just coping with everything that is happening & also helpful for later with pain. We will meet again next week to make a tape for me & talk more.

I also needed to start on some new medication, Methylphenidate (Ritalin), to help with some anxiety from home, etc. that my psychiatrist, Jesse, wanted me on to settle me down. He will meet with me again next week to see how I am doing on it & if it needs to be adjusted or not.

I also meet with a study nurse, Kathy, for a study I am participating in regarding cognitive skills & how/if the chemotherapy/radiation/transplant affects them or not. Sounded interesting. *g* They will begin some baseline work/testing next week.

I also met with my team doctor, Mike, & nurse, Katheryn, for a check up & they think everything is in order & ready to start some re-work-up. Got some refills on some of the medications I am taking.

I went over to the surgeon, Dr. Terrie, that did the hysterectomy, & she said I am doing really well & look really good. *lmbo* So, she has released me back to the Hutch. Yippie!!!

I went back to the Hutch to check with my scheduler, Christine, and learned that they wanted me back on the 1st of October.

Meet with Jesse, Janet, nutrition, Kathy, another Chest XRay, & a bone marrow biopsy *ouch!*. And always blood draws to check various things.

I also talked to my study nurse, Eileen, regarding the radiation protocol & the HAMA blood test is still negative!!! Yippie!!!

So….here is what I know… of course, everything is subject to change at a moment’s notice!! *g*

October 1st ………..Hutch appointments.

October 6th………..Hutch appointments (not sure what yet).

October 7th……….. HAMA blood draw & perhaps other appointments.

October 8th…………If HAMA is still negative, I will go into the University of Washington for TBI (total body irradiation). I will be in radiation isolation from the 8th until the 12th when they will discharge me.

October 12th………Along with being discharged from the UW, my donor brother,Darren, from California will need to fly up on this date.

October 13th………Darren has appointments at the Hutch mostly having to do with blood draws & tests as well as blood storage. The blood work done earlier was only good for 30 days & so is expired & needs to be redone.

I will have a Busulfan & Dilantin Clinic. It will explain further the side effects of the Chemotherapy drug, Busulfan, & why they are putting me on the anti-seizure medication, Dilantin. Also will give me the ‘loading dose’ of the Dilantin that day.

October 14, 15, 16, 17………Busulfan Chemotherapy. Along with taking 4 doses each day of Busulfan, they will do frequent blood draws to check the Busulfan levels in my blood to make sure I don’t have a seizure…. one of the possible side effects of the Busulfan. That is why I need to take the Dilantin.

October 18th………Admit to Swedish Hospital & begin IV Chemotherapy with Citoxan; day 1 of 2.

October 19th………Citoxan Chemotherapy; day 2.

October 20th………Day of rest!!! *g*

October 21st………Bone Marrow Transplant.

That morning my brother, Darren, will go into the hospital. He will be given anesthesia & they will insert a large needle into his pelvic bone about 200-300 times to aspirate his bone marrow. They will then ‘clean’ it to remove bone fragments, etc… & it will go into a ‘bag’.

It then just attaches to me through my Hickman Catheter & drips into me. The bone marrow knows where it is supposed to go.

Then we wait & see if & when it begins to graft. There is the possibility that Darren’s bone marrow/blood will reject my body. That is called Graft vs. Host Disease. This can be the pitts, but I don’t want to go into that right now. *g*

I am excited, nervous, anxious, agitated, sad, …. just a real jumble of nerves & emotions!! I don’t want to leave my kids again, but will. I will be glad to be away from DH! *g*

(Those of you who know, know why!)

Mom will be down in Seattle at the hospital with me except while I am at the UW in isolation.

We (actually Mom!) will have access to a computer at the Hutch (across the street from Swedish Hospital). I would love to hear from you!! Especially once I am at Swedish Hospital. Please write!!! 

I will be in the hospital for about 30 days after the transplant. Then once I am discharged, Mom & I will have to find an apartment down in Seattle near the Hutch. They require that you reside within 30 minutes of the Hutch. That is for emergencies, etc.

I will add more as it happens…..

Mom opened an account at a bank for donations to help with all the things that my insurance does not cover…. Any amount would be appreciated ….thank you.

God bless you all.

`plum’s cyber puddle – Last Messed With On: 092998 @ 1:18am PST

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Reta Jayne

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I am Reta Jayne. I help women learn to love themselves again (or more!) through no-bull discussions about mental health, self-care, & more. Click the email icon to subscribe to & communicate with me via email.

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