Fusionera's Journey:

  1. 1 Oh No Icon Oh No
  2. 2 Procedure or Surgery Icon Procedure or Surgery
  3. 3 Radiation Icon Radiation
  4. 4 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  5. 5 Oh No Icon Oh No
  6. 6 Procedure or Surgery Icon Procedure or Surgery
  7. 7 Decision Point Icon Decision Point
  8. 8 Clinical Trial Icon Clinical Trial
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  14. 14 Side Effects Icon Side Effects
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  18. 18 Oh No Icon Oh No
  19. 19 Procedure or Surgery Icon Procedure or Surgery
  20. 20 Other Care Icon Other Care
  21. 21 Other Care Icon Other Care
  22. 22 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  23. 23 Radiation Icon Radiation
  24. 24 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  25. 25 Oh No Icon Oh No
  26. 26 Procedure or Surgery Icon Procedure or Surgery
  27. 27 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  28. 28 Celebration Icon Celebration
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  33. 33 Decision Point Icon Decision Point
  34. 34 Procedure or Surgery Icon Procedure or Surgery
  35. 35 Radiation Icon Radiation
  36. 36 Loss Icon Loss
  37. 37 Celebration Icon Celebration
  38. 38 Procedure or Surgery Icon Procedure or Surgery
  39. 39 Decision Point Icon Decision Point
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  43. 43 Procedure or Surgery Icon Procedure or Surgery
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  47. 47 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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  53. 53 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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  55. 55 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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  72. 72 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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  75. 75 Drug or Chemo Therapy Icon Drug or Chemo Therapy
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  77. 77 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  78. 78 Decision Point Icon Decision Point
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    ???
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    ???
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  89. 89 Milestones Icon Milestones
    ???
  90. 90 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  91. 91 Loss Icon Loss

Patient: Brain and Spinal Cord Tumors in Adults > Glioma > Astrocytoma > Intermediate-Grade Astrocytoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 23 years ago, Female, Age: 48

  1. 1
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Diagnosed

    Oh No

    After nearly a year of inexplicable symptoms, including violent headaches and what turned out to be focal point seizures, I was diagnosed with a brain tumor, something I am sure my physician did not expect to tell an otherwise healthy 26-year-old woman. My parents came up from Southern California that weekend, as did my cousin.

    0 Comments
  2. 2
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Surgery

    Procedure or Surgery

    My surgery was scheduled for 4 days later, Tuesday, September 12, 1995. However, on the 11th, immediately following the consult with my neurosurgeon, I endured yet another violent headache. My neurosurgeon then witnessed what it was that got me diagnosed in the first place. He immediately ordered that I be admitted to the hospital instead of waiting until the next morning. My parents drove me to the emergency room, which just happened to be across the way at the hospital where my operation would take place the next day. The surgery lasted 6.5 hours. The softball-sized tumor was fairly invasive and had damaged healthy tissue surrounding it in my right temporal lobe. That certainly explains the immense intracranial pressure it produced, as well as the other symptoms I endured. The seizures and the headaches immediately disappeared. Unfortunately this was only the beginning of my journey.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  3. 3
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    External radiation

    Radiation

    I had 6.5 weeks of standard beam radiation. I had to laugh when some of my fair fell out one day; it weads completely painless and I was in sheer disbelief. I thought hair loss was solely related to chemotherapy, not radation therapy. My MRI after completion looked great, and I was advised that I would have chemotherapy beginning in January "as a preventative measure."

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    1 Comment
  4. 4
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I had two courses total of PCV chemotherapy, which was a standard regimen at the time (early 1996). I got very sick after the first night because I was not advised I had to take chemo on an empty stomach. I went to a neighborhood restaurant, had a nice meal, and took my chemo before bedtime. I spent literally 8 hours vomiting and dry-heaving. Lesson learned - take this stuff on an EMPTY stomach unless I want to be deathly ill.

    Easy to Do: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  5. 5
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Mixed MRI results

    Oh No

    I returned from a neighborhood pharmacy with my chemotherapy to find a message on my ansewring machine. It was my neuro-oncologist's office, frantically telling me NOT to take my chemotherapy because something qustionable had shown up on my MRI. I was then scheduled for a PET scan to confirm what was indeed on my MRI.

    0 Comments
  6. 6
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Surgery

    Procedure or Surgery

    April 19, 1996 saw my second craniotomy in a seven month-period. The surgery was only about 3 hours this time, and I returned to work after 6 weeks, far sooner than the 3+ months I was gone after the original surgery.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  7. 7
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Chemotherapy options

    Decision Point

    With a second surgery I had to evaluate what (limited) treatment options were available. I was offered the opportunity to participate in the original clinical trial of Temozolomide...yes, I am the Queen of Temozolomide all these years later. I did the trial from May 1996 - May 1997.

    0 Comments
  8. 8
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Temozolomide (Last enrollee at UCSF!)

    Clinical Trial

    The clinical trial of Temozolomide (Temodar) went from May 1996-May 1997. I did not get sick nor did I lose my hair. I am so grateful it was easy to take AND I worked my full-time job the whole time.

    0 Comments
  9. 9
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Remission

    Celebration

    Temodar successfully drove my tumor into remission and my MRIs continued to be clear for many years to come. I then began studying for graduate school entrance exams. I went on to earn my MBA degree in 2001.

    0 Comments
  10. 10
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Cancer is back/Recurred

    Oh No

    In July 2005, the day escrow was closing on my first home purchase, I had an MRI and was advised by my neuro-oncologist that the tumor had come back.

    0 Comments
  11. 11
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Poly-ICLC Chemotherapy

    Clinical Trial

    I was offered a new clinical trial of an immune response booster (Poly-ICLC) that involved self-administered injections 3 times weekly.

    0 Comments
  12. 12
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Cancer is back/Recurred

    Oh No

    By Christmas 2005 my MRI scan showed that I had two tumors...needless to say I was removed from the trial and put back on Temodar to stabilize the tumors.

    0 Comments
  13. 13
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    SAHA and Temodar

    Clinical Trial

    In March 2006 I joined the clinical trial of SAHA paired with Temodar. It lasted one year, until March 2007.

    0 Comments
  14. 14
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Weight gain

    Side Effects

    SAHA was a nasty drug to take. I gained about 65 pounds on this trial, primarily because the SAHA made me feel sick to my stomach even though I had taken strong anti-nausea medication. I had to consume abnormally large meals to tolerate the drug.

    0 Comments
  15. 15
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Anniversary

    Celebration

    September 8, 2010 marked 15 years since my diagnosis with a Grade III Oligoastrocytoma. I had a really FUN party!

    0 Comments
  16. 16
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Mixed Scan Results in February 2011

    Oh No

    I had lost my job in November 2010 and was on the hunt for a new job. I was deciding what to do about my health benefits so I had my MRI 2 months earlier than scheduled. The scan had changed since my last one in November 2010. My neuro-oncologist scheduled one for 30 days out just in case it was a delayed change from my last chemotherapy.

    0 Comments
  17. 17
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    Anniversary

    Celebration

    Today, September 8, 2013, marks 18 years since my diagnosis of a Grade III Oligoastrocytoma. I am still here to XXX off as many statisticians as possible!

    1 Comment
  18. 18
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Cancer is back/Recurred

    Oh No

    March 2011 marked official notice of my 3rd recurrence. Surgery was scheduled for May 31, 2011. THIS TIME though my (new) surgeon was removing the remainder of my right temporal lobe. This surgery would prove to be more than I bargained for.

    0 Comments
  19. 19
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Surgery

    Procedure or Surgery

    I had my 3rd surgery on May 31, 2011. This was NOT at all what I had prepared myself for. I woke up with violent headaches due to blood getting into the spinal column and agitating it. I spent one week in the hospital, returned home, and within less than 24 hours had completely lost my ability to sit up, let alone walk. The headaches lasted for 5 weeks 24/7 without any relief during that time.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  20. 20
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Skilled Nursing/Rehabilitation

    Other Care

    I needed to regain the strength to sit up, let alone walk again. I spent 5 weeks in a private skilled nursing facility in my town of residence. It took about 3 weeks before I saw any notable progress in my ability to sit up and then stand up. I eventually learned to walk again.

    0 Comments
  21. 21
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Hospitalization

    Other Care

    With the complication of not being able to inexplicably use any of my limbs I was re-hospitalized for ten days back in the neurosurgery wing of the hospital where my 3rd surgery took place.

    0 Comments
  22. 22
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I am still the Queen of Temozolomide....I am taking this for a minimum of 6 months. I tolerate it well although the last 2 days of the cycle make my stomach uncomfortable.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  23. 23
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    External radiation

    Radiation

    I underwent 6.5 weeks of standard radiation therapy. I had to laugh the day that my hair (what I had left following surgery) had begun to fall out. I thought hair loss was only a chemo-related thing. I clearly had not believed my doctors when they said I might lose my hair. I didn't lose too much hair and what I did lose grew back eventually (following my 2nd surgery in 1996).

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  24. 24
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Upon completion of radiation therapy in December 1995, my MRI looked good and I was advised that I would receive "chemotherapy as a preventative measure". In January 1996 I began PCV chemotherapy (procarbazine pills, CCNU pills, and vincristine injections). PCV was at the time a standard treatment method. I had a total of two courses before things took a turn.

    Easy to Do: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  25. 25
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Mixed scan results...

    Oh No

    After picking up my next round of chemotherapy pills at the local pharmacy, I came home to find a message on my answering machine fom my neuro-oncologist's office that something had showed up on my most recent MRI scan. They told me not to take my chemotherapy. Perfect timing! I was then scheduled for a PET scan to confirm what was on the MRI.

    0 Comments
  26. 26
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 7 years ago
    Fusionera's Avatar

    Surgery

    Procedure or Surgery

    On April 19, 1996, weeks after having a PET scan that confirmed my first recurrence, I had a second craniotomy. The same surgeon who did my original surgery also performed this second procedure. As I was asymptomatic this time, the surgery was just over three hours, as compared to the original procedure's 6.5-hour length. I also spent fewer days in the hospital this time. I returned to work after 6 weeks, much better than the 3+ months I spent off work after my original surgery and radiation therapy.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  27. 27
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 6 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Temodar - my friend, AGAIN! I started chemotherapy in August 2011, with a goal of 6 months of treatment.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  28. 28
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 6 years ago
    Fusionera's Avatar

    Finished treatment

    Celebration

    I have not taken chemo since March; we put it on hold for April and May to help me heal from some other side effects of my surgery. My MRI this week (#63) was again stable, as it has been for many months. We are probably just looking at scar tissue from the margin of the surgery. I am therefore now officially done with chemo!! I will try to slowly reintegrate myself into the working world again and live on as a survivor instead of a current patient. This September marks 17 years since diagnosis for me. I am so relieved!!! For now I am enjoying a summer vacation, indulging in hobbies I've always enjoyed, and sleeping in. I will revisit the working world after a trip back east for a family reunion in August.

    1 Comment
  29. 29
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 6 years ago
    Fusionera's Avatar

    MRI #65 is clear! Moving on to scans every 3 months instead of every 8 weeks!!!

    Celebration

    YAY! MRI #65 was stable...no changes...no sign of that dumb BT..the hole in my head is clear! My neuro-oncologist said it was very eerie that the scan was practically identical to my August MRI. My head must have been in the exact position for this one, because there was essentially no difference between the slices (you can usually see even a slight difference between scans). I love having a clean brain that still works! :-)

    0 Comments
  30. 30
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 6 years ago
    Fusionera's Avatar

    MRI #66...waiting for the results on Monday 2/25.

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  31. 31
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 6 years ago
    Fusionera's Avatar

    Anniversary

    Celebration

    September 8, 2012 marks 17 years since I was diagnosed with a Grade III Oligoastrocytoma. Back in 1995 I was given a matter of weeks or months and no more. It's no wonder when I look back at my very first MRI scan. The tumor was causing such intense pressure in my brain that it is amazing I didn't stroke. I was diagnosed after some extremely painful headaches and about 10 months of focal point seizures. Here I am....still trying to figure out what I want to be when I grow up....now that I KNOW I will have a chance to grow up.

    0 Comments
  32. 32
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 6 years ago
    Fusionera's Avatar

    Cancer is back/Recurred

    Oh No

    MRI #66 showed a new spot where there previously was none. I now have appointments set up for March 6th and 7th to meet with the neurosurgeon and nurse about CyberKnife treatments. This is battle #5 for me over an 18-year period. I just finished the 4th battle (3rd recurrence) in March 2012. The book I am writing is taking a little bit of a turn now.

    0 Comments
  33. 33
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    Future Treatment Options: CyberKnife first

    Decision Point

    Because my latest recurrence is so small (and thankfully not diffuse!), my neuro-oncologist recommended CyberKnife radiation. I set appointments with the cancer center and neurosurgery center for my pre-treatment and radiation therapy session.

    0 Comments
  34. 34
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    MRI #67.. paired with a CT Scan!

    Procedure or Surgery

    MRI #67 was for the express purpose of programming my treatment plan into the CyberKnife. This was by far the worst MRI experience I've ever had! They poked me SIX times to get the contrast into the vein!!! I think my veins are tired of all the action they've had over the past almost 19 years.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  35. 35
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    CyberKnife Radiation Treatment

    Radiation

    Had a custom-made mask, very similar to the one I had made in 1995 for my initial radiation therapy. This one, however, had a schnoz on it. Thankfully I was only scheduled for one treatment. I was fully prepared in case I needed to stay in the area for a few days but it was not necessary. Easy and they played my favorite CD for me while I was being zapped.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  36. 36
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    My mind/Sense of Humor

    Loss

    Had to relinquish my crown as the Reigning Queen of Temozolomide. I am grateful for the extra 17 years of survival it has given me so far, but it seems my tumor has wizened up to Temodar and is no longer sensitive to it. My options are limited at this point, although I've been assured there are definitely things that can be done before we need to use Avastin on this stupid tumor.

    0 Comments
  37. 37
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    Anniversary

    Celebration

    17 years since Dr. Weinstein took another crack at my noggin. My mom told me years ago that Dr. Weinstein came out of surgery, and when he came into the waiting room where my family was waiting, he had a look on his face "like a boy who had just received a new toy boat." He told my family that they had gotten all of the new growth, as well as the old stuff from my initial craniotomy 7 months prior. I just loved mom's description. I could almost picture that look on Dr. Weinstein's face.

    1 Comment
  38. 38
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    MRI #68 on April 25th, 6 weeks after treatment. It was a bit soon, but necessary to do because my COBRA was ending. Scan was inconclusive, as there were changes noted but they could be radiation-related changes or tumor regrowth. No way to tell quite yet.

    Procedure or Surgery

    I must be going for a world record...68 MRIs from 9/8/95 to 4/25/13.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  39. 39
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    Insurance Issues....how fun!

    Decision Point

    COBRA ended May 1, 2013, and I became eligible for Medi-Cal. I see Medi-Cal as a deterrent more than anything else. I will be liable for almost $1400 per month of medical expenses and Medi-Cal handles the rest. The only real benefit Medi-Cal has for me is in the event of catasrtophic illness. I can't afford to get my MRIs and checkups on this plan. I applied for an individual plan through Kaiser and was naturally turned down. Now I am waiting for confirmation of Kaiser coverage through the state of California's "Major Medical Risk Insurance Program" (MMRIP). They've already cashed my check for the first month's premium, but I've yet to receive confirmation of a start date for my plan. I will eventually have to get a part-time job just to afford my insurance.

    0 Comments
  40. 40
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    Breakthrough

    Celebration

    I started taking courses in Excel to update my skills, and a Technical Writing course so I can shift directions from my previous marketing education and work experience. it feels so amazingly liberating to know that I am not stuck having to do work I despise just because of my previous education (marketing degree and an MBA) and experience. I am finally starting to feel some courage to reinvent myself so I can feel good about what I do. I've not been feeling generally hopeful about things in general, just because I know it is a matter of time before I am battling my next recurrence (I am still in battle #5 right now), but I can at least try to move forward.

    0 Comments
  41. 41
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    insurance Issues Resolved!!

    Celebration

    My insurance is now in effect. MRI #69 (that is correct - I've had 68 MRI scans on my brain) is on Friday Sept. 6th. Unfortunately I will not see my neuro-oncologist until the 12th to get the results.

    0 Comments
  42. 42
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    Anniversary

    Celebration

    Today, September 8, 2013, marks 18 years since my diagnosis of a Grade III Oligoastrocytoma. I'm still here to tick off as many statisticians as possible. heh heh

    1 Comment
  43. 43
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 5 years ago
    Fusionera's Avatar

    MRi #69 on Friday 9/6/13. I will find out the results on Thursday Sept. 12th.

    Procedure or Surgery

    MRI #69 and no one blew a vein this time while administering Gadolinium.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  44. 44
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 5 years ago
    Fusionera's Avatar

    MRI 69 results mixed...

    Oh No

    I had my first scan in five months. The gap was due to insurance issues. My scan showed changes, but my NO was not sure if they were due to radiation necrosis or tumor regrowth. We will do an interval scan on October 21st, which I hope will give us better information about the pace of the changes taking place,

    0 Comments
  45. 45
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 5 years ago
    Fusionera's Avatar

    Cancer is back/Recurred

    Oh No

    MRI 70 showed a significant growth/change since last month: the nhanced area in question was under 2cm in September and is now between 3 and 4 cm. We are now certain we are looking at tumor growth instead of radiation necrosis. I begin Avastin tomorrow (Tuesday 10/22). Let Battle #6 begin.

    1 Comment
  46. 46
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 5 years ago
    Fusionera's Avatar

    MRI #70

    Procedure or Surgery

    My 70th MRI showed significant tumor growth since my 9/12/13 scan.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  47. 47
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 5 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Had my first dose of Avastin by IV today. Felt fine throughout, and I anticipate it will be relatively easy to tolerate,. Praying that my blood counts hold up and my urine tests continue to be fine. My next session is in 3 weeks, on November 12th.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    2 Comments
  48. 48
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 5 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Avastin treatment number two today...went smooth as silk. :-)

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    1 Comment
  49. 49
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Avastin on Christmas Eve morning! Aren't I lots of fun? ;-) Went smooth as silk, as usual.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  50. 50
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Chemo on Christmas Eve morning - why not? Avastin is by far the most tolerable treatment I've had in my 18+ years of battling my brain cancer. I am so incredibly pleased. No anti-nausea meds. :-) AND it's working! I also learned that the drug is used for macular degeneration. Pretty wild!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  51. 51
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    Cancer is shrinking

    Celebration

    MRI #71 showed that my "naughty child" has shrunk a full centimeter since I began Avastin in October! My neuro-oncologist was thrilled and I am incredibly relieved. It is all I wanted for Christmas!

    2 Comments
  52. 52
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    MRI #71 on 12/16/13

    Procedure or Surgery

    Another MRI...easy freezy! I punched out the scan on my Frequent Scanner Miles card! Avastin is working! My naughty child has shrunk a full centimeter since I began the Avastin on October 22nd!

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  53. 53
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    5th round of Avastin!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  54. 54
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Avastin Round 6

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  55. 55
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Round 7 of Avastin complete. I go next on March 18th. I also decided to get a Power Port put in, so I can save my poor veins from being so heavily poked. I think my veins have had enough. My Halloween costume this year will be a repeat of 2005: The Amazing, Astounding Human Pin Cushion!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  56. 56
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    MRI #72 on Feb.20, 2014. Results were stable/unchanged fom December's MRI.

    Procedure or Surgery

    Although the tumor did not grow, I was admittedly disappointed that it did not shrink as we found on my last MRI, but for now it is stable and I will continue on Avastin.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  57. 57
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    Decided to have a Power Port installed

    Decision Point

    I don't know why I did not do this earlier, but I've decided to have a port installed for m chemo, etc. My veins are probably very scarred at this point given that I've had 72 MRI scans, countless blood draws, and several different chemotherapies in my nearly 20-year brain cancer battle. My appointment is for Monday March 3rd.

    0 Comments
  58. 58
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    Had a port put in!

    Procedure or Surgery

    I finally decided to have a port installed on my right side so I can have my chemotherapy, blood draws, and MRI gadolinium injections without my poor veins being repeatedly poked. After a nearly 20-year battle with my cancer, my veins are sensitive and probably a bit scarred up.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  59. 59
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 5 years ago
    Fusionera's Avatar

    Birthday

    Celebration

    Today I reached my 45th birthday! This was a VERY significant day for me, as my mother died of metastatic breast cancer when I was 10 years old. She passed away exactly two months to the day before her 45th birthday. She died on Aug. 29, 1979, and would have been 45 on October 29, 1979. Given my own nearly 20-year battle with brain cancer, I am lucky to have made it this far!

    4 Comments
  60. 60
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    this was my first Avastin treatment since I had my port put in two weeks ago. What a joy to not have my veins poked anymore! It was painless for my chemo nurse to put the line into my port. :-) 3 more weeks until the next treatment. I have MRI #73 on April 7th.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    1 Comment
  61. 61
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Housing arrangements made with a friend from church

    Loss

    I recently short-sold my condominium. I could cite many reasons, but the most important is medical. I bought my 2nd floor condo 9 years ago. At that time I had no idea my brain tumor was coming back. There are very steep concrete steps in front of my condo. After my 3rd surgery, which took place in 2011, I developed severe nerve pain and neuropathy, in the left half of my body. Accompanying that were mild balance issues. In 2012 I had a deep-brain stroke and didn't know it. It is now extremely painful for me to maneuver the stairs, especially going down them. I am not comfortable carrying trash downstairs, etc. I am a fall risk and need to be in a first-floor unit. I can handle interior carpeted stairs, as they are usually soft, but where I live now poses a danger to me. One of my fellow church members had offered a place for me, as she has a studio in back of her home. We came to a verbal agreement, and all I needed to know was to let her know when I was moving. She has a medical student who has intermittently rented the unit. "M" as I will call her, told me she would advise the student that she had a long-term renter moving in. On April 1st, M called to tell me the student got into the program for which she applied and would be moving in as of June 1st. She just completely negated our agreement. She offered to have me move in for April and May, but that I would need to vacate by the end of May. I am not moving TWICE this year. Needless to say, this was not the monkey wrench I needed right now, and I will never trust this woman again. We used to serve on a committee together at church I left because of my health issues). I decided not ever to return to the committee after this happened. Thankfully, I'm close to confirming a new place to move.

    0 Comments
  62. 62
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    I

    Celebration

    I short-sold my 2nd floor condo and moved to a share rental situation. BIG relief not only financially but also health-wise. I no longer have to navigate those horribly steep concrete steps. My nerve pain makes it difficult to walk on uneven surfaces. I am very pleased and grateful I made the move, and for all the people who made this happen.

    0 Comments
  63. 63
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Thalamic stroke that caused bodily weakness and resulted in two falls.

    Oh No

    This is the second thalamic stroke I've had since my initial one in 2012. This one caused left side weakness and two falls. The second fall resulted in minor injury. My Avastin treatment has been suspended at this time.

    0 Comments
  64. 64
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    MRI 74 confirmed recent thalamic stroke.

    Procedure or Surgery

    My brain is tired of nearly 20 years of treatment and rebelled by having a stroke. MRI was done one week earlier than scheduled because of repeated falls.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  65. 65
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    MRI number 75

    Procedure or Surgery

    MRI #75 revealed post-stroke recovery and that the tumor is stable. This is excellent news as I have not had Avastin since late April. Next one is due on August 4th.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  66. 66
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Possible deep-brain thalamic stroke and ER visit on Wed 6/25

    Oh No

    I spent the day feeling lightheaded, and by early afternoon my lips and tongue went numb. I had an MRI (#76) at the ER, which showed no new stroke activity, and no tumor growth. The neurologist believes that I did have a small stroke, but that it is smaller the recovery area of my previous stroke, and therefore too small for the MRI to pick up. For now, my Lipitor dose has been doubled. MRI 77 is set for August 4th. My neurologist believes I did have a stroke, but it was smaller than the resolved area of the May 9th stroke, and therefore too tiny for the MRI to pick up.

    0 Comments
  67. 67
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Klutzy me broke my left arm in two places on July 4th!

    Oh No

    I slipped on a piece of paper on my bedroom floor and down I went. OUCH!!! ER visit in the middle of the night. Might have to have surgery, but I will find out after another x-raylater this coming week.

    2 Comments
  68. 68
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    MRI #77

    Procedure or Surgery

    WHAT A NIGHTMARE!!! The MRI folks failed to put me on their schedule. They squeezed me in at 11:30, 2 hours after I was due for my scan. I have a broken wrist, and my half-cast prevented me from fitting in the MRI . They removed the cast and slowly got me into the scan. Then my power port wouldn't get any blood return, and they had to use my arm for injecting the Gadolinium. After finishing the scan, someone from prthopedics came down to remove my sutures and put on a splint that looks like a glove. This week I am due to have a cast put on.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  69. 69
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Cancer has spread/Metastasized

    Oh No

    Scan showed significant tumor growth since June. My neuro-oncologist and I decided to give Temodar another try. Avastin has too much of a stroke risk and I've already had two strokes because of it.

    0 Comments
  70. 70
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    MRI #76

    Procedure or Surgery

    MRI 76 was thankfully stable, which is great since my last dose of chemo was in April.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  71. 71
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    MRI #77

    Procedure or Surgery

    I learned that my tumor is growing very quickly. The difference between the June and current scans was quite drastic. My neuro-oncologist and I discussed my very limited options: 1) Do nothing; 2) Continue Avastin with its stroke risk; or 3) Give Temodar another try. I decided on #3 so last night I reclaimed my crown as The Queen of Temozolomide and began my 5 days of pills.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  72. 72
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    5 days of Temodar complete. I have a reprieve until my September 3rd MRI scan. Praying hard that this drug will work its magic as it did in the past.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  73. 73
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Cancer is shrinking

    Celebration

    Good news on MRI #78. I went for 3 nights to see my dear friend perform at 2 different jazz clubs. It was amazingly therapeutic. :-) Now I'm sad because I have to wait until he comes back again.

    0 Comments
  74. 74
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    MRI #78

    Procedure or Surgery

    MRI #78 showed some small improvement! Very impressive since I've only had one cycle of Temodar. Now I can start cycle two. My next MRI will be in November (2 months instead of one). I am so relieved that my tumor is STILL dumb. It is still sensitive to temozolomide. I started the second cycle tonight. I'm such a hot Friday night date.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  75. 75
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Cycle two of Temodar has begun. Night one complete. LOL

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  76. 76
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Anniversary

    Celebration

    September 8th marked nineteen years since my original brain tumor diagnosis. Next year is the big twenty!!!

    0 Comments
  77. 77
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Cycle Two of Temodar complete. I'm free until early October Whew!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  78. 78
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    To give up driving and sell my car

    Decision Point

    My oncologist and my family both expressed concern about me driving bevause of two deep-brain strokes I had this year. While they did not affect my verbal abilities or cognition, I've experienced additional weakness in my left side and apparently there is a decrease in my lower right peripheral vision as noted by the ophthalmologist. Now I am selling my car, which I got from some close friends just a few months ago before they moved out of state

    0 Comments
  79. 79
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Starting Temodar cycle number 4 tonight. The reigning Queen of Temozolomide so far retains her crown! Blood work was fine and platelet counts are holding steady at 177 - same as in September. Whew! I will take five days of pills, Friday night through Tuesday night.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  80. 80
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 4 years ago
    Fusionera's Avatar

    Decision Point

    This person has yet to add any details about this experience.

    0 Comments
  81. 81
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 4 years ago
    Fusionera's Avatar

    Decision Point

    This person has yet to add any details about this experience.

    0 Comments
  82. 82
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 4 years ago
    Fusionera's Avatar

    Relationship

    Loss

    I have two girlfriends with whom I've enjoyed a 7-year friendship. I recently stopped driving and sold my car. Both women felt I should have sold it to the one's daughter, and for far less than its market value. They have stopped responding to my texts, and one of them simply sent me a text that had 2 words: greedy taker. It makes me sad, but at the same time angry because I felt cornered into making a decision I was not really ready to make. A seven-year friendship just thrown away, and the feeling of me being thrown away as well.

    1 Comment
  83. 83
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 4 years ago
    Fusionera's Avatar

    MRI # 79! Thankfuly Temodar is still working and the tumors are shrinking. I can start the next round of chemo. Whew!

    Procedure or Surgery

    Sp glad my MRI showed that the chemo is still working.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  84. 84
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Cycle Four of Temodar complete! I'm off the hook until early December! Whew!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  85. 85
    • Fusionera
    • Experience with Intermediate-Grade A...
    about 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Started Cycle Five of Temodar tonight (Wed. 12/3). Easy freezy. I've got pill-taking down to an art form.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  86. 86
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 4 years ago
    Fusionera's Avatar

    MRI number 80!

    Procedure or Surgery

    MRI number 80 showed the tumor to be "questionably stable" - it looks stable but there are a couple areas of concern that we will watch. There was some enhancement in an area that previously looked better. No change in actual size of the spot - it's just brighter than before.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  87. 87
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Started Cycle Six of Temodar on New Year's Eve! I am such a party animal!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  88. 88
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Cycle 7 of Temodar is done, just in time for me to look for a place to live in Colorado next week. I fly out on the 10th of February.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  89. 89
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 4 years ago
    Fusionera's Avatar

    Milestones

    MRI number 81

    0 Comments
  90. 90
    • Fusionera
    • Experience with Intermediate-Grade A...
    almost 4 years ago
    Fusionera's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Completed my 8th consecutive cycle of Temodar since August 2014. My February 24th MRI showed what looked like tumor progresion so my next MRI this month will determine whether I continue on this drug or return to Avastin.n

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  91. 91
    • Fusionera
    • Experience with Intermediate-Grade A...
    over 4 years ago
    Fusionera's Avatar

    Driving is no more for me and I've only had my car for a few months! :-(

    Loss

    My oncologist AND my family both expressed concern about my being on the road because of the thalamic deep-brain strokes I suffered in May and June. They don't want me endangering myself or others, or for anyone else to endanger me, Watching another piece of my independence go away. Angers me and makes me sad.

    0 Comments