DeaconsWife's Journey with Leukemia

Patient: Leukemia

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 8 years ago, Female, Age: 55

  1. 1
    about 5 years ago
    DeaconsWife's Avatar

    Other

    Oh No

    I had heard of Leukemia, but I didn't really know what it was. I had never linked it with cancer until I was diagnosed and my primary care physician started to explain to me the tests that would be needed to confirm the diagnosis, the treatment options that would be discussed if the diagnosis was confirmed, and what my role as a CANCER patient was going to me in my overall care plan. Wait! Did you say CANCER?!

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  2. 2
    about 5 years ago
    DeaconsWife's Avatar

    After being told the diagnosis was possibly cancer, I had to decide whether or not to tell my husband, my kids, and my extended family.

    Decision Point

    I agonized over this for almost a month. My primary care doctor got me the earliest appointment with a very good hematological oncologist she knew of. The time between her breaking the news and the appointment for the tests was about 4 1/2 weeks. Should I tell anyone? What if the diagnosis is that I don't have Leukemia..then what? Have I then worried everyone needlessly, or added to the fear because it if wasn't Leukemia, that meant we didn't know what it was and a whole new battery of tests would be needed to determine that. All this....and I have just very basic insurance.... I had to decide and didn't know what to do. I couldn't tell my friends before I told family...there's a precedent hierarchy for breaking this kind of news. But I needed guidance and had to ask SOMEONE what to do and if I told anyone it had to be someone who would not become overly concerned or necessarily burdened by the news. Then, three days before my appointment with the oncologist, I told the only person I could think of. I told a priest in confession that I didn't know what to do. He wasn't even my pastor at my church, but was a priest at another church. The whole flood of questions came out then. He was patient with me and let me go on until I ran out of things to say. Then he said "God put you and your husband together, and only He can take you apart from each other. Go to the other half of your 'one' and tell him. He has a right to know that one half of 'you one' is sick. From there you can BOTH decide who else might need to know. I called him at work and confirmed what his schedule for that evening was going to be. See, he's a permanent deacon at our parish, plus he also does live television uplinks for the local PBS station affiliate on an as-needed basis, plus his day job is maintaining the computer classrooms and computer lab machines at the local state college. With all this going on in his day, a call from me to confirm his evening plans was not unusual. But the sound in my voice or something told him he really needed to be home tonight. He was home for dinner without a single interruption from phone or internet or email; and he listened very carefully while I explained the best I could about what was wrong. I felt so much better telling him. Don't ever go it alone! My blood pressure was up until that night and the next day I went back in for a check and it was back to where it belonged. I would go get the tests done and he would pick me up from the hospital and we would discuss the next step after getting the results. Whew! I was still scared witless, but at least we had a plan!

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  3. 3
    about 5 years ago
    DeaconsWife's Avatar

    Diagnosed

    Oh No

    On May 13, 2009 my diagnosis of Chronic Lymphocytic Leukemia was identified and confirmed. I told my husband, and together we decided to tell my youngest daughter who still lived with us (the other two had grown and moved away). We would tell the others as the need came up, out of respect for my desire to not burden anyone else with worrying about me. My oncologist gave me a list of vitamins to take and a schedule of dates for follow-up blood tests. He was looking for patterns in my blood production...size of cells, number of cells, which KIND of cells, shapes of those cells. Every two weeks or so I went in to get my blood drawn. After the third or fourth time it was getting old. I was tired of needles already and no one had said a thing about chemo....yet. I fretted how much more painful, inconvenient, and uncomfortable THAT was going to be when the time came.

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  4. 4
    about 5 years ago
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    Health insurance issue

    Oh No

    I found out that I was dropped from my previous insurance plan. I know the President signed some bill about insurance companies not being able to drop you for needing to make a claim. They didn't drop me for making a claim. They dropped me because "We are not a major-medical coverage provider. Therefore, we cannot cover a major-medical patient. And a diagnosis of Leukemia, a blood cancer, is a major-medical issue." Great. That's just great. My oncologist's nurse had a suggestion; apply for Medicaid. I sent them everything about my financial and health life that existed (they asked for more but there wasn't any 'more' to send to them) and for three weeks I worried. My letter came back. I qualified for 'share of cost'. That was good, like having a co-pay, or so I thought. Until the next page said my 'share' was over $2,000.00 a month. I finally got over being upset about a week later when I realized if I am hospitalized with this, it will cost that much just for the first day....so at least my 'major medical' was finally covered. It would be the day-to-day meds for my high blood pressure and asthma that was going to send my family to the poor house, but at least it wasn't going to be needing 'major medical' care.

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  5. 5
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    July of 2011, after measuring everything from the size of my red cells to the number of white cells to the volume of overall cells in one deciliter of my blood; my oncologist decided that the white cells have overrun the red cells and that chemo aimed at the mis-developed white cells would trigger my body to stop making a) So many mis-developed cells and b) stop making so many in the first place. This time was outpatient. Three days in a row, three weeks apart. That is to say, it was a Wednesday, Thursday and Friday..then three weeks later was Wednesday, Thursday and Friday..for 15 weeks from the middle of July until the end of October. A total of 5 sessions. I had three different kinds of meds for my chemo. Each had to be fed in the IV separately, even though they were given to me back to back to back...because each one required a different drip rate. One of them had to be refrigerated right up to within 30 minutes of administering it. I hate being cold. I had always hated being cold, even as a child I hated being outside in winter. This stuff was like winter in my veins...brrrr. I could not get warm even hours after I was home and wrapped up in my flannel jammies AND in my Thinsulate insulated, fur lined snugglie. After the second session I learned to bring my shawl, wear sweats, and speak up to ask for a warmed blanket as I needed them. The third session had me dressed in sweats, folded into my shawl, and covered with 5 warmed blankets, one to sit in the chair on and the others covering my shoulders, torso, legs, and feet. I still shivered, but at least it was controllable under that many blankets. My hair 'thinned out' rather than came out in clumps, thank goodness. Possibly because of the hair cut that took almost a pound of weight off my scalp. And the info about being gentle when I washed my hair was very helpful in this, too. I lost my appetite. Before, it was "Don't eat that potato chip, that's junk food" before chemo but quickly turned to "Please eat just one potato chip? How about a Dorito, or a cracker? Please?" after my first session. On session days, I couldn't taste anything so food was of little interest. I needed strong-flavored food just to be able to taste something of it. My infusion center sent up lunch trays from the hospital cafeteria for each patient in a chair at lunchtime. That was very nice because for some reason, I could smell it and taste it. I couldn't eat all of it, mind you, but I could eat a bit. It was baked fish with a very strong lemon-dill sauce, Spanish rice with heavier-than-average pepper, and a chill-mac casserole that had sweet peppers and dried tomatoes in it. My wonderful husband happily ate my leftovers the first two sessions. I thought he was just hungry, which he was, but that wasn't the only thing....he went home and learned how to make dishes that tasted strong like that for me so I could get back to eating normally by the end of the weekend. What a trouper, eh?

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    about 5 years ago
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    Chemo brain

    Side Effects

    I had already had some memory problems before even being diagnosed with Leukemia. Turns out I probably had the disease for years before it was finally accurately diagnosed, and that would have effected my brain's ability to get, process, and retain nutrients needed for good memory...least of which is NOT oxygen. Chemo made it worse. Much worse. I would tell my husband "yeah, I'll really try to do the dishes today." Then I would sleep until noon and get up for a little bite to eat and find my self in the living room on the couch with a book and next thing I knew it was 5pm and my husband was coming in the door from work. "What did you do for 8 hours?" he'd ask. I couldn't tell him, really...I had slept through most of it.

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  7. 7
    about 5 years ago
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    Hair loss (alopecia)

    Side Effects

    My hair was still falling out whenever I washed my hair or brushed it. I was aware it was going to happen, I was prepared to accept it as temporary and that the hair should grow back once the chemo drugs were worked out of my system. However, I was starting to become alarmed about it when it cost $75 to have a plumber come fix the bathtub drain...just to have him bring out a 5" long plug of hair out. My hair. Out of the drain line. I started taking a tub bath and used a kitchen strainer to scoop out the hair before letting the water go so that we didn't have any more unexpected plumbing bills. One good result of that was that I learned that I relaxed more in the warm tub and didn't fear falling...after all.....I couldn't fall down because I was already down.

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  8. 8
    about 5 years ago
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    Fatigue (tiredness)

    Side Effects

    The fatigue was the worst. I slept on and off as I could and still felt weak as a baby. Sessions ended late in the day on Friday...by Monday I would finally get to where I could walk around without getting too dizzy. By the following Thursday I could walk around the house without holding on to things. But the sleep, I did a lot of sleeping. My husband was disappointed that housework wasn't getting done. Dishes sat in the sink. Laundry that he started in the morning was still waiting to go in the dryer by the time he got home. It seemed he didn't understand. It was like since he couldn't SEE my illness, he forgot I was ill. By the first week in November, however, I was done with chemo sessions and was feeling stronger, and my appetite returned. My blood worked looked good but I was still easily fatigued. My oncologist said it was the compromised immune system and my body telling me to take it easy so I didn't become sick with something like the flu or something like that, which would be ok for a normal person but could be very serious for me.. More days of feeling useless, helpless, powerless......

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  9. 9
    about 5 years ago
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    Mouth dryness

    Side Effects

    Toward the middle of November, 2011 I started having problems sleeping. I went from sleeping a lot to needing to get up every couple of hours because I couldn't breathe through my nose. I also had the worst-ever case of dry mouth I had ever encountered before in my life. I marked it down to needing to breathe through my mouth because I couldn't breath through my nose when I lay down. I thought it was either allergies, or maybe a head cold. I knew I couldn't take cold medicine without asking the doctor so I didn't take any. I started blowing my nose alot trying to clear it out, and that only made the stuffiness worse (my nose had become swollen, you see) And I was having more trouble keeping warm, even though the thermometer I kept by the bed said my temp was a little below normal, no fever. I drank water or warmed water every few hours, sipping it to try to get it to soak into my mouth membranes and stop the uncomfortable dryness. I started needing to use the bathroom more often, as a natural result of drinking more often. And I started sleepin on the couch because the arms of the couch could prop me in a nearly-sitting position so I could still breathe and try to sleep.

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  10. 10
    about 5 years ago
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    Shortness of breath

    Side Effects

    By the Monday before Thanksgiving, 2011, I was so tired from not sleeping well that I would only wake up when I had the most urgent need to urinate. I couldn't get to the bathroom fast enough to narrowly avoid an accident. I placed a wheeled computer chair by the bedroom door so that the next time I had to go, I could move from the bed to the chair and then quickly scoot down the short hall to the bathroom before loosing control of my bladder. This seemed to be a workable solution. However, I was still cold most of the time and my waterbed is heated...and the blankets were cozy even if I couldn't get really comfortably warm, I could get comfortably cuddly and would eventually fall back asleep. I hate hate HATE being cold and so another mad dash from the bathroom back to the covers was very important to me. I would be slightly out of breath by the time I scooted back to the bedroom and dove back under the covers. ..... I started coughing, but nothing was coming up, so I propped my pillows higher and tried to sleep in the waterbed propped up like that. It worked through Wednesday, and Thursday we went to my eldest daughter's for Thanksgiving Dinner. I felt pretty tired, but happy. Happy changed by Friday afternoon. I woke up Friday morning achy like when you get the flu or lay in bed too long. Except it wouldn't go away. I kept thinking "Great, now I have the flu, instead of a cold." The feeling of not getting enough air (a familiar one for an asthmatic like myself) seemed constant in spite of using an inhaler twice during the day. I remember thinking "Don't go getting really sick now (as if cancer isn't 'really sick). Don't want to give any bad vibes to 'Black Friday". I went to bed earlier than usual, right after dinner....and two hours later had to use the bathroom. I really felt like lead in my arms and legs. I sat up and got myself to the edge of the bed and on my feet, and got to the chair and then to the toilet...and had to catch my breath. I sat there for about 10 minutes huffing and puffing like I had run a marathon. I got my breath back and realized I couldn't stand up so easily this time. I was a little dizzy and realized I was falling off the toilet. I must have yelped or something because both my husband and my youngest daughter rushed to make sure I was alright. My husband told my daughter I was fine and that she could go back to bed. I lay there on the floor in front of the toilet with the seat caught in the back of my folded knees. The seat. It was stuck in the fold of my knees. Ah, that must have been what happened, the seat broke and I fell off the toilet because the seat broke and slid off under me. We have a small bathroom. The term "Water closet" would be apt if applied to it's overall size. I was stuck because the seat was stuck and I couldn't straighten out my legs to let go of the seat so I could get up. My husband helped me out of my predicament and helped me to my feet. I went back to bed, more huffing and puffing but this time thought it was because of the accident in the bathroom and getting cold laying on the floor like that all bent over.... Two hours later, I tried to go to the bathroom again. I made it there with all the huffs and puffs and I think I even took a little nap on the new seat there....I realized I must have dozed off and tried to go back to bed. I was in the rolling chair....then I wasn't. I don't know what happened in between but I must have made some noise because my husband was asking sleepily if I was ok. I said I was because I didn't know anything else to say. But I was on my back on the floor and I didn't care. I was too busy trying to breathe. Twenty minutes later, my husband asks "Are you ok?" "Yeah, just let me catch my breath and I'll be in bed shortly." It took another ten minutes but I got myself off the floor, and breathing hard, got myself on the bed. I used the inhaler one more time. There. That was going to be better. I fell asleep. I woke up shortly thereafter realizing I had a anxious feeling in my chest and was again gasping for air. I thought I must have had a night mare. It happened again a little later, I don't know how long, but I was still cold from having lain on the floor so it wasn't too long, I started awake again. I realized I couldn't breathe so sell, even under the covers and propped up on the pillows. I woke my husband and said I needed to go to the ER in the morning. Not right now, but as early in the morning as we could leave.

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  11. 11
    about 5 years ago
    DeaconsWife's Avatar

    A trip to the ER

    Oh No

    The next morning, after a laboriously long effort getting dressed and catching my breath again, I realized I could not walk as far as our path from the front door of the house to the car parked by the road. The distance is about 30 feet. The solution was to use to chairs and 'leap frog' them so I could move from one chair to the next down the path to the car. Once I got in the car, we drove to the ER at the hospital where my oncologist's office was located near. It took about an hour to actually get in to see the triage nurses the first time. I dozed on and off in a wheel chair while I waited. My color was bad, so they had me sit in the hallway near the triage room so they could keep an eye on me while they worked on the car wreck victim they had in their at the time I arrived. I startled awake again and started the huffing and puffing like I had been holding my breath. That got a lot of attention and I was swept into the triage room. They check all my everythings and decided I needed to be admitted. My mind was blurry but I remember something about a chest x-ray and low oxygen and that I was going to need a room with oxygen in it. Of course I would...can't breathe without oxygen. Unless I had died I would need oxygen....Then I got it. They meant oxygen tanks...like when my brother had a major asthma attack and they put an oxygen mask over his face when he went to the hospital as a kid. I must have been having a serious asthma attack. Explained a lot from my point of view.

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  12. 12
    about 5 years ago
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    Pulmonary Embolisms-Rare by known side effect of my chemo

    Oh No

    I wasn't have just any ole asthma attack. I was dying. I had blood clots in my lungs. Both of them. One was 95% occluded (blocked) and the other was about 45% occluded. No wonder I couldn't breathe! I spent 13 days in the hospital on heprin and saline to 'melt' the clots. They also put a device in the sciatic junction of my veins that would 'strain' any clots from my legs so they could not get into my lungs again. The device is called a 'something' tulip. It looked like a plastic flower with holes in the petals. They went into the sciatic vein from inside my right leg and used a cable-like device to set it in place and adjust it where it belonged. They gave me a great local, but they gave me an oral general, too. The tranquilizers were supposed to 'help me stay calm'. and the local was doing all the actual pain-stopping work. I kept dozing off during the procedure. An hour later for what was supposed to take about 10 minutes...the surgeon was stitching my leg up. I asked what took so long. He said I kept passing out and they could not continue until they brought me around again because each time I passed out, my blood pressure would drop to almost nothing. Wow. I had no idea just exactly how sick I was until that moment. Then I passed out again. This time, I remember feeling like I was being held...like a baby held in one arm by a parent. I could feel my cheek against a chest with a strong-steady heartbeat. A woman (who sounded motherly) was holding my hand and another, younger man was pushing my hair out of my face, stroking over and over to calm me down. My mind raced to identify who and why I was being held and comforted. A great sense of peace came over me then. I felt I was being held in God's left arm (He needed his right one so he could keep doing his God-things) and that Mary was trying to soothe me and that Jesus kept stroking my hair and asking me to just keep my eyes closed that I didn't need to see Father's face right now that I could see it later. Once that sense of peace washed over me, I slept.

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  13. 13
    about 5 years ago
    DeaconsWife's Avatar

    Hospitalization

    Other Care

    I woke up about 3 hours later. I was in a hospital room and had an IV in my arm and a nurse was checking it.

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