MRoadrunner's Journey:

Patient: Lung Cancer > Small Cell

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 4 years ago, Female, Age: 66, Stage Extensive, SIADH: No

  1. 1
    about 4 years ago
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    Oh No

    I hadn't been up and about for couple of days, not feeling well...barely eating or drinking anything. My granddaughter who lives with me had been away and came home, didn't hear any activity so investigated and found me unconscious and unresponsive in bed! She called 911 and I was transported to the hospital. I had previously been hallucinating/confused for approximately 36 hours. When I got to the hospital, I was fighting and preventing the ER team from putting me on Bi-Pap and evaluating me. I was still hallucinating and thought they were going to chloroform me and kidnap me and move me to another location. I didn't know who "they" were. I was petrified! After injections of some pretty heavy-duty meds, Haldol and Ativan IV. I calmed down, went to CT and the extensive SCLC was diagnosed in the upper lobe of my right lung. In addition, the tumor was pressing on the SVC, (the major heart vein), and growing into the mediastinum and bronchus. I improved a bit on Bi-Pap but the outlook was so grim. It was not operable. Dr. M, along with the ICU team, determined that it would be futile to intubate me. They called my family in and told them I would not survive the weekend & there was nothing more they could do for me but I would be kept comfortable. Well, I not only survived the weekend, but by Sunday night they admitted me and found me a room on a respiratory floor. By Tuesday I was telling the nurse to take catheter out. Thursday pm I was found an oncology bed and was again transferred. I started chemo on Sat, Sun, Mon. and went home Monday after chemo!

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  2. 2
    about 4 years ago
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    Fluid removed from lung

    Procedure or Surgery

    significant pain & pressure at the insertion site; in retrospect it was a useless procedure for me as there was minimal fluid and as it was drained it turned to gel. Not what they were expecting.

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    about 4 years ago
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    Needle Biopsy

    Procedure or Surgery

    Lot of bruising at insertion site from needle due to being on heparin, also breast and upper chest bruised but resolved over time. however, the procedure was a piece of cake as opposed to the thoracentesis...was well medicated for comfort and anxiety.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  4. 4
    about 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I had four rounds of chemo, carboplatin and etoposide, for three consecutive days, 21 days apart except that I had to be postponed for a week on two of these occasions because my blood values were critically low. The first time it happened, I cried, as no one told me that it's very common. I chose to not have a port and didn't mind the frequent needle sticks. The nurses said it didn't matter to them either way. (They are angels!)

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  5. 5
    about 4 years ago
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    Thinking problems

    Side Effects

    anemia, neutropenia, chemo brain, confusion, constipation, fatigue, alopecia memory loss, dry skin & mouth, peripheral neuropathy ( for one night only, on scalp), pain, taste changes, urinary frequency, edema in lower legs, ankles & feet, gastro-esophogeal reflux (for one night). Considering this long list, most S/E's were quite tolerable except for the constipation which was the worst of them all.

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  6. 6
    about 4 years ago
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    What to do with this hair?

    Decision Point

    I started losing my hair 2 weeks to the day after my first round of chemo. I had beautiful thick, shiny dark auburn hair; now it was falling out. I went to my God-daughter's husband's barber shop and asked him to shave my head. He was pensive, never having done this before but he did give me a close cut. I finished the job when I got home and continue to shave every 4-5 days. I was going for the Sinead O'Connor look but ended up looking more like Uncle Fester from The Addam's Family, I have now grown accustomed to baldness and it's no hair drama! I'm not sure yet if I'll ever let it grow back.

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  7. 7
    about 4 years ago
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    Relationship

    Loss

    There are some people who have been avoiding me because of my diagnosis. Some are related, some are friends... friends for nearly a lifetime and this hurts. I do understand it though. It's too painful for them to even think they will lose me so they're creating an emotional divide so it will seem easier for them when I reach my expiration date. With treatments today, I could have years left, and we could be making more wonderful memories!

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  8. 8
    about 4 years ago
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    Finished treatment

    Celebration

    Had my birthday and finished 4th round of chemo for good on the same day! Had a surprise family/close friend dinner party that evening.

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  9. 9
    about 4 years ago
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    need to make decision now

    Decision Point

    I need to make the decision now, whether to have PCI. I am going for a brain MRI in three days, and if the brain is clear of cancer cells I am not sure which way I'll lean.

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  10. 10
    about 4 years ago
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    Birthday

    Celebration

    I celebrated my granddaughter's 22nd birthday yesterday evening at her favorite restaurant There were 10 in our party & it was wonderful to be there! She means the world to me.

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  11. 11
    about 4 years ago
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    I'm going to have PCI.

    Decision Point

    I had another consultation today and the doc went into more detail and answered all my questions. I was fitted for a mask and next appt will be a trial run, then 15 visits for the radiation.

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  12. 12
    about 4 years ago
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    External radiation

    Radiation

    Three days into the PCI, I was again fatigued, started to have burns on my scalp, vertigo, headache. Burning throat, burns on chest. Then came floaters which the oncologist said was not related to the treatment. I had 13 treatments and it wasn't too bad overall.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  13. 13
    about 4 years ago
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    External radiation

    Radiation

    What my doc said, that this "PCI should be a walk in the park for you after what you've already been through" has turned out to be no walk in the park. For the past two days I have had intensive burning/itching of my scalp and forehead due to hair loss. I can actually feel my hair follicles dying! Add agitation/crying for no apparent reason to the headache I've had for 13 days now to the fatigue I've started experiencing and that's the story. I relapsed and bought a pack of cigarettes. I saw the nurse 2 days ago after treatment and she prescribed lidocaine cream which took the pharmacy 20 hours to fill. It helped a little but it cost $32 because it wasn't covered by my insurance. As a last resort, I also tried some Capsaisin P cream and that did help along with the lidocaine. I have used it for 20 plus years on an area of neuropathy from herniated discs, and being at the end of the rope decided to try it on my head even though it's not one of the approved creams for radiation therapy. Remember the name...you can buy it over the counter! I got my head shaved again and that also seemed to help. I only have 3 more treatments at this point.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  14. 14
    almost 4 years ago
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    External radiation

    Radiation

    In the process of radiation to the lung; ten treatments thus far resulted in only minimal side effects, (burning skin and fatigue), both of which were expected. I got up and made coffee this morning and found out why they prescribe "Magic Mouthwash". One sip of coffee and my throat and chest was on fire! I made a large pot of soup yesterday and I'm thinking of pureeing my lunch. So difficult to swallow, more than I had imagined.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  15. 15
    almost 4 years ago
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    Cancer is shrinking

    Celebration

    My oncologist wanted new baseline CT scans. I still have a nodule, 1cm in the right lung, and and that size is decreased from 6cm. I also have a nodule barely 2cm in the mediastinum. She feels that the continued effects of radiation will cause them to continue to shrink even further, so it's "Let's watch it for now".On the positive side, the abdomen, pelvis and liver are fine. It's spring, 65 degrees today and sunny. My forsythia is in full bloom, my lilacs have started to bus and also my hydrangea. Daffodils are in full bloom. It's a great day and I'm so happy to be alive!

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  16. 16
    over 3 years ago
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    Problem with doctor

    Oh No

    I found myself sick again with vague complaints. Over the phone my oncologist arranged to have me preadmitted to the ER at 5pm if there wa no asking my daughter for a ride to the hospital, for the 1st time I didn't feel it safe to drive myself. I always felt better knowing my "getaway car" was parked in Valet parking. Good decision because I just made it out of the ER when I went into acute respiratory failure and put back on Bi Pap which strangles me and appears to not work for everybody. They inserted a chest tube to suction. My daughter and my granddaughter switched shifts at the hospital due to work schedules and they are both listed as health care proxy. All of a sudden, as soon as my daughter left, they started to started to exert authority ,I believe due to her age (she's 22). I tried to remove the Bi Pap mask because I couldn't breathe and my SAo2 was spiraling downward. They (Doctor M) told my granddaughter that I had to be on the mask. She stood up to them but ended up in tears because they were not allowing her to do her job as HCP. My daughter had to leave her job to come back and put them on notice as to what is not acceptable and they were both knowledgeable with responsibilities to me. In addition, I have a DNR order. They quickly took off the Bi Pap and moved my room. It was a little hairy for about an hour or so, but I said I was done fighting. My SAo2 started to come up into the high 80-low 90s. I continued to improve and was ready to be discharged home when I was getting ready for bed and I felt drainage at the chest tube site; it literally fell apart in my fingers. A respiratory therapist was called immediately and she said there were problems when inserting the CT. The oncologist supervising felt the need to "makeshift" the tube by cutting it and taping it together. Both RT's tried to tell the Onc that is not the acceptable way to do it. The onc told me that they put it in wrong. He attempted to lie and cover his XXX, throwing these 2 staff members under the bus. The Onc came in to check on the tube and said he could probably fix it. When he realized that I saw it, he tried to cut it in pieces. I picked up the pieces and slipped them into my purse. He stated "oh no, you can't keep that, it's junk" I told him that I do want to keep that...for a souvenir. I think at that moment he changed his demeanor and scheduled me for another CT insertion the next morning. I was discharged home after 8 days.

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