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I observed here a while ago that I am a big one for anniversaries. But tonight I’d like to discuss something a little different. How do you know you have reached a milestone? What sorts of benchmarks have you set for yourself in terms of recovery?

I didn’t make enormous progress in the skills that were assessed at the start of the 12-week Livestrong program and at the end. These included measures of balance, flexibility, and strength; fortunately for me, I started out fairly well on all counts and so had relatively little to improve. However, you’d better believe I’m happy when I’m able to increase my weight or my reps on the workout machines, or up my time on the elliptical.

I do have a bit of a competitive streak, and always have, going all the way back to 4th grade when we had arithmetic flash card drills around the classroom. That’s another story, since I always wound up losing somehow to one particular boy—after beating everyone else first. But I’ll refrain from that digression. I raise it here only to note that some time later I learned that it’s far more satisfying to compete against myself. At this juncture setting and surpassing some workout goals seems to be a healthy way to meet those ego needs while getting stronger and more fit.

Outside of my exams and consults, which measure my health in entirely different ways, it’s not easy to tell how much I’m getting “better.” I can, however, look back to my stamina and mood during significant events of the past two and a half years to gauge how far I have come.

Two years ago last weekend, I attended one of the performances of the community choir my husband conducts. I traveled down with friends so that we wouldn’t have two cars to drive home afterwards, and even so I could not make it through the entire afterglow. I was still undergoing chemo, and I had recently lost all my hair. It hurt to eat some things, and I was crushingly tired after a certain hour no matter what.  It’s a relief to realize how far I’ve come along since then, an awareness reinforced this past weekend when I not only attended the group’s performance and the afterglow, feeling more than well enough to be sociable, but drove both ways as well.

The performance seasons for this choir offer another reminder of my progress, because the concert season of the fall of 2010 was my husband’s first one as director there, and my first one singing with that group. We were both so terribly tired after that weekend of performances in early December—which followed four days of extra rehearsals with the orchestra that is not-so-fondly known as “hell week—that it was a minor miracle we made it home safely following the party. I was already seriously symptomatic, and in retrospect I can see that I was terribly scared about what was wrong. I did get even sicker before diagnosis and treatment, and my recovery has not been a straight-line ascent. But I am definitely better than I was in December of 2010.

Summer vacations this year will provide another means of comparison for me. In July of 2011, not yet through with chemo, I traveled to rural Virginia with my husband and daughters for my oldest nephew’s wedding. The trip down was simply awful. It was brutally hot, and we were all out of sorts just from that. We had to break up the trip because I did not have the stamina for 9-10 hours in the car at a stretch, and we stayed at my sister’s on the way. Unfortunately, the temperature didn’t drop much below 80 that night, and my sister’s house did not have working AC or decent air circulation. Thus by the time we reached our destination, we were all on our last nerve. The only saving grace was that by some fluke we had wound up with a Cadillac as our rental car (our own beaters being far from reliable enough for such a trip) and so we had comfy seats and wonderful cool air as long as we were on the road.

I had a meltdown at the rehearsal dinner, feeling beyond weary physically and feeling great anxiety and grief about perhaps never seeing my own daughters’ weddings. My nephew's father had died some years before of cancer, so that reminder hung heavy for us all. And that was before we’d gotten our disconcerting news about my chemo failure and the lung mets. I did manage to pull myself together, and for the most part I think we all wound up enjoying the wedding weekend. But that was definitely another low point.

The vacation season I had last year demonstrated significant improvement over the adventures of 2011. When my husband had a few days off, we went camping fairly close to home. We didn’t have an ambitious agenda, other than enjoying some quiet time apart from the usual routine, but I was far more able to enjoy the moments as they came and went, rather than worrying about what had been or what might lie ahead. In part that’s a function of my improved physical health, and I should not be disingenuous about that influence. It’s also an indication of my increased ability to bracket my awareness of being under threat, at least for a little while at a time.

My experience at NN12 was also a good test of my recovery to that point. Traveling on my own was tough, no doubt about that, and I needed every minute of sleep I could get. But I was far more able to keep up with the pace of the event than I expected I would be, and that was definitely heartening. I suspect that NN13 will be challenging in new ways, but I’m grateful not to have to plan as carefully as I did last year for bail-out time. We’ll see how well my expectations match the actuality.

I haven’t mentioned the possibility of decreases in health and fitness along the way, though I’ve also experienced some of those (and continue to do so). Of course, other factors complicate the process for all of us, as this example illustrates. An acquaintance of mine has been struggling with a serious case of colon cancer (which unfortunately has recently recurred). After her first chemo treatments, feeling miserable and depleted, she asked her oncologist how long it would take for her to feel back to normal again. He replied, "About 10 years." Once she recovered from hearing that blunt assessment, she pointed out that she would then also be ten years older, and thus presumably not as fit as she was when all this began. He acknowledged that, but then reminded her that it would be better to be ten years older after all.

The most frustrating chronic after-effect I have to cope with, apart from fatigue, is related to my current treatment. I have not yet gotten a good handle on my weight, which has increased by about 20 pounds over the past 20 months since I’ve been on hormones. I feel as though that’s a sort of time bomb waiting to release other negative effects, so that’s one major motivator for me to increase my exercise goals.

I’ll go on the record here with my fitness objectives for the summer and fall. Currently I’m getting to the gym twice a week, most weeks, and doing 17 minutes of cardio each time. I’d like to nearly double that cardio time in the next six weeks, so that in another thirteen weeks after that I have a good chance of getting close to the target of 150 minutes per week. Specifically, here is my plan. To add about 5 minutes per week will get me to about 64 minutes/week by mid-June. To double that again would mean adding another 64 minutes, which will take about thirteen weeks at a rate of 5 extra minutes per week. Then I’ll be about 22 minutes short of the goal of 150/week, which I would hope to meet with another four weeks of incremental progress. If I can do it more quickly, I will; I’d like to get to that level before the fall rains arrive. Simple enough in theory, right? I’ll keep you posted about how things are going. Even holding the line at my current weight, rather than gaining a pound a month on average, would be helpful, though I am hoping for some loss.

And now it’s your turn. How do you assess your progress? Has it been even or sporadic? Has some recurrent event helped remind you of where you were compared to where you are now, as my husband’s concerts do for me? Do you have particular goals for yourself? Please do share as you are comfortable. And of course, this is always also an open thread for anything else that’s on your mind and heart.

Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.

Originally posted to peregrine kate on Mon May 06, 2013 at 04:45 PM PDT.

Also republished by Monday Night Cancer Club.

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Comment Preferences

  •  Welcome, first-timers and old-timers! (16+ / 0-)

    I hope you'll find the company and topic congenial. I'm glad to be here myself.

    Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon May 06, 2013 at 04:15:03 PM PDT

  •  Hi Kate and everybody... (7+ / 0-)

    got a quilt diary up this evening that will be of interest to this group.  It's for Serpents Choice whose fiancee recently passed away.  

    Kate, I remember you so well from NN13 -- and that wonderful evening a group of us traipsed all over Federal Hill looking for the right restaurant -- and boy, did we find it!  One would never have known you had been ill -- not from your physical condition.   Moreover, there was a joy of life that was clearly flowing through you every minute of that conference!

    You can order Pootie Pads here. Pooties love them!

    by Sara R on Mon May 06, 2013 at 05:20:16 PM PDT

    •  Hi, Sara! That was a delightful evening, for sure (5+ / 0-)
      Recommended by:
      Sara R, weck, ZenTrainer, Avila, ladybug53

      one of the highlights of the whole event for me. Wonderful company to fit the glorious food.
      Thanks for recalling that vivid memory, and thanks for the link to your quilt diary. Poor SC. His is a great loss.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon May 06, 2013 at 05:29:49 PM PDT

      [ Parent ]

  •  i finally got my NED (no evidence of disease) (7+ / 0-)

    probably a couple months ago. i don't even remember the date. big event, but guess i just did not want it to become like an anniversary or something.

    now my big task is to find exercise program that works to nix the pain i get from hormones been taking for over year now to nix the birth of new cancer cells. And try to find way to build back bone loss caused by the hormones so i don't have to take this horrible pill fosamax that has more bad side effects, like loosing teeth and spontaneous fractures.

    "It is in the shelter of each other that people live." Irish Proverb

    by Patriot Daily News Clearinghouse on Mon May 06, 2013 at 05:44:52 PM PDT

    •  I remember your announcement! (6+ / 0-)

      It is a BFD even if all the rest of the issues remain.

      Are you interested in hearing from people about what they've tried and found helpful in terms of exercise?

      When I was just starting back, restorative yoga was all I could handle. I especially looked forward to savasana (corpse) pose, since that was very restful. I've gone to more strenuous classes since, and there is a big difference. I think I like the slower, easier ones better.

      Then I ventured into qi gong, which I have also enjoyed very much. My instructor is not terribly pushy about what we accomplish, but over time I guess I've learned a fair amount. The movements are gentle but thorough, if that makes any sense.

      I like t'ai chi too, but my schedule just hasn't accommodated the classes I could take.

      All of these are low-impact, low-stress exercises which might be of some use to you as an easy way to get a workout. If you're looking for aerobic workouts, maybe someone else with more experience can share what they've liked about what they've tried.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon May 06, 2013 at 05:54:43 PM PDT

      [ Parent ]

    •  Congrats! (7+ / 0-)

      Fosamax isn't so bad.  I took it for 5 years, finished taking it about 8 years ago.  No problems with teeth or bones, though my PCP always asks about it.  It's funny how, after cancer treatment, non-oncology docs always freak out when you present with any kind of minor health problem or slightly unusual test result?

      Glad to hear you're NED!

      "If you can't take their money, eat their food, drink their booze and then vote against them, you have no business being up there."

      by Betty Pinson on Mon May 06, 2013 at 06:03:40 PM PDT

      [ Parent ]

      •  thanks, that's great to hear. i have one year (6+ / 0-)

        to see if i can get my bones better, and if not, my cancer doc wants me to take fosamax. wanted to start me on now, but all the side effects freaked me out. i think because still working on the side effects from hormones.

        "It is in the shelter of each other that people live." Irish Proverb

        by Patriot Daily News Clearinghouse on Mon May 06, 2013 at 06:08:24 PM PDT

        [ Parent ]

        •  The bone necrosis side effect (6+ / 0-)

          while real, occurs in a very small percentage of people who take it.  YMMV

          Just found this on wiki re osteonecrosis:

          Although this side effect is uncommon, it occurs primarily in patients being administered intravenous biphosphonates, with most cases being reported in cancer patients.
          There aren't many other side effects.  Someone once told me their mom had heartburn from it, but I never had any problems - just take it and forget about it.  Oh, I forgot, you have to lay down for about 20 minutes after you take it.  That's just to prevent problems w/ heartburn.

          More on estrogen therapy from Merck (emphasis mine)

          Concomitant Use with Estrogen

          Hormone Replacement Therapy
          In two studies (of one and two years’ duration) of postmenopausal osteoporotic women (total: n=853), the safety and tolerability profile of combined treatment with FOSAMAX 10 mg once daily and estrogen ± progestin (n=354) was consistent with those of the individual treatments.

          Link

          As for the studies on osteonecrosis, its been a long time since I read them and I'm too lazy to look them up now, but IIRC, in the trials there were only 1% or less of patients in the study groups who developed the problem.  More long term data is now available, but I don't think that risk factor changed a whole lot.

          "If you can't take their money, eat their food, drink their booze and then vote against them, you have no business being up there."

          by Betty Pinson on Mon May 06, 2013 at 06:26:02 PM PDT

          [ Parent ]

    •  i'm so happy for you (6+ / 0-)

      okay, i knew before, but NED is always reason to celebrate. ;)

  •  Heading to DC tomorrow to lobby (7+ / 0-)

    Fly in early, hit The Hill, then fly home in the evening.  

    There's a special reception tomorrow just for Sen. Tom Harkin. He's been such a huge supporter and leader on so many breast cancer and health care bills.  He's irreplaceable.  Gosh, will he be missed by the breast cancer advocacy community.

    "If you can't take their money, eat their food, drink their booze and then vote against them, you have no business being up there."

    by Betty Pinson on Mon May 06, 2013 at 06:08:33 PM PDT

    •  How cool! (5+ / 0-)
      Recommended by:
      Sara R, weck, ZenTrainer, Avila, ladybug53

      But yes, though I don't know anything about Harkin's record on BC, he's got a great record otherwise. Very hard to follow.
      So, btw, would you be interested in writing up a report on your lobby day for the MNCC sometime soon?

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon May 06, 2013 at 06:12:00 PM PDT

      [ Parent ]

      •  Sure, no problem (6+ / 0-)

        I hope I don't get in any fist fights this time, but if so, I'll leave that out ;-)

        It's just not going to be the same this year with Rep. Kucinich gone.  Last year, I started to get weepy with his LD, who I had known very well for several years.  

        Story about Harkin (I'm pretty sure I have the details correct, but no promises).

        In 1992, several breast cancer activist groups (not Komen) went to Congress and asked for $300 million per yr for breast cancer research.  Congress usually gives that money to NIH and NCI.  

        The activists asked NCI and Congress if they would agree to promise:
         the funds would be spent only on breast cancer research and
        the research program would be open and transparent, ie NCI would report on which research projects were funded and what the results were.  NCI said "go away little ladies, we won't do that."

        So Tom Harkin, who was serving on Defense appropriations at that time, said he would help them set up their model research program over at DoD.  DoD grants a lot of money for medical research and are very experienced and meticulous at managing the grants programs.  

        And that's exactly what happened.  It resulted in an innovative, efficient, creative basic & translational  research program.  Over 90% of funds go to research grants at universities & research institutes across the US, over $1 billion to date.  DoD BCRP funded the research that led to the discovery of the Her2-neu oncogene and the development of Herceptin.

        Tom Harkin did that.  In an indirect way, you can thank Tom Harkin and DoD for Herceptin.  (Well, you can thank Denny Slamon, too, and a few other guys).

        Ok, I'm done practicing my DoD BCRP pitch, haha.

        "If you can't take their money, eat their food, drink their booze and then vote against them, you have no business being up there."

        by Betty Pinson on Mon May 06, 2013 at 06:47:03 PM PDT

        [ Parent ]

  •  Speaking of diary topics, here's the current list: (4+ / 0-)
    Recommended by:
    ZenTrainer, Avila, Sara R, ladybug53

    Cancer and PTSD
    Cancer and Depression
    Cancer and Anxiety
    Race and Class Disparities in Cancer Survival
    Clinical Trials (murasaki)
    Cancer and Genetic Testing
    Cancer and Environmental "Hot Spots" (DWG)
    Cancer and Patient Advocates (Avila)
    Politics of Cancer (ZenTrainer)
    Cancer and Survivor's Guilt

    I'm hoping that posting it early would get some more attention and volunteers....

    Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon May 06, 2013 at 06:44:36 PM PDT

  •  I don't measure that way, I sort of don't do (5+ / 0-)

    time. I have noticed that I can move in ways I couldn't 2 years ago though. I notice that from doing Qi Gong.

    A friend of mine asked if we follow a form like in Tai Chi but this is Qi Gong for healing. I especially like that it wakes up my lymphatic system.

    One of my goals is to lose weight and that was made a bit easy by spring in TN. The best/worst we've had in 10 years.

    Best in beauty, worst for my allergies. So I quit eating gluten, cheese and most sugar. The gluten and cheese are bad for my allergies and I believe the sugar feeds cancer.

    Oddly cutting these things out cut out the cravings within less than a week. One big motivator was the ability to breathe!

    I found this diary way late tonight so have to go but wanted to drop in.

    Tracy B Ann - technically that is my signature.

    by ZenTrainer on Mon May 06, 2013 at 06:53:30 PM PDT

  •  I appreciate the conversation tonight; thanks (4+ / 0-)
    Recommended by:
    Avila, ZenTrainer, Sara R, ladybug53

    for stopping by.
    I'll check in again in a little while, but I have a couple of chores to take care of before my landlord comes over tomorrow to fix a couple of plumbing problems. Toodles--see you in a few.

    Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Mon May 06, 2013 at 07:46:50 PM PDT

  •  hola, mi amigas y amigos (4+ / 0-)

    good to see everyone!  

    i'm working on something for MNCC about how to copy your entire medical record to a zip drive or USB (less than $10 for 16 GB) and a true lifesaver for me, but i have some questions, and would really appreciate any thoughts you may have.

    the two considerations are how comfortable people are with scanning documents and saving to zip drive (it's easy if you know how and feel well enough . . . but when you most need those records, chances are you don't feel up to it).

    if you cannot do it yourself, then release of medical records to your health care surrogate or someone you trust would require your consent in writing.  (required by HIPAA law on protected health info and confidential nature of PHI.)  

    depending on the state, this person may need a temporary power of attorney to access records and copy for you to a tiny storage device you can fit into a pocket.

    final consideration:  what records are necessary?  

    anyone with cancer is likely going to have pounds of paper that compose a "chart."  with every hospitalization, more is added.  some isn't really critical to the patient (like the pharmacists' counts and sign-off records, many years of labs within normal parameters, many of the nurses' notes on uneventful days.)  

    how can we know what is important or might be  later?  ideally, your doctor or staff or the hospital staff could help with that.  

    i started out with "unusual" labs, PCR, bone marrow, all the imaging and x-rays, but added more later in my doctor's office.  this may be different for everyone.

    i still think it's very useful to have this info at hand with a password, preferably encrypted, 'cuz you never know when natural disaster may strike, and waiting a month for paper records from an out of state hospital can seem like eternity.

    sorry, Katie, if this is OT.  my goal is to simplify things like milestones and benchmarks, 'cuz my memory isn't real reliable. ;)

    •  Great Question (5+ / 0-)

      I am a member of Kaiser and their rules are simple and easy.   Almost 10 years ago they started the process of going electronic with all patient records.  they now are nearly fully electronic so for them providing a thumb drive is easy.  The thumb drives they provide are all pass word protected so that not anyone can view your records thus protecting your medical privacy if you should lose it.  

      Most doctors offices and hospitals have a contractor come in and scan records of patients especially if the records are extensive.  It happens all the time.  but it does cost money for the service and it is not always perfectly responsive to time sensitivity issues.  

      The standard that Social Security Disability uses for most cancer patients is they want to see medical records beginning 3 months prior to the onset of your condition. I will use my situation as the example.  

      On Mar 6, 2012 I saw my doctor for the first time because I had a cough.  That doctors visit resulted in further follow up visits with specialists and investigative procedures resulting in my diagnosis of lung cancer on April 6, 2012.  So when I filed my claim for disability they requested copies of my medical records beginning January 1, 2012.

      I hope this helps you Avila.

      Life is not a problem to be solved but an adventure to be experienced.

      by DarkHawk98 on Mon May 06, 2013 at 08:54:50 PM PDT

      [ Parent ]

    •  These are all fabulous questions, and the answers (4+ / 0-)
      Recommended by:
      Avila, ZenTrainer, Sara R, ladybug53

      to them will make your job much easier. Let's hope that the night owls/left coasters will weigh in on them now; I wouldn't hesitate to repost them next week (and later still) if need be.

      You are quite right, in many ways these are the benchmarks and milestones that matter the most.

      My own cancer center has really gone for computerized records in a big way recently, so I would have two major tasks to address first. The DPOA for HC I do have, and that definitely should be scanned in for ready availability. But I should also log in to the darn patient portal they have for records now to see how current/accurate they are compared to the records I have on hand. So that's where I'll start.

      After that, I'm thinking of keeping a running and updated version of tests (scans for me and blood results). Not much else gets done on me. I don't get a copy of the consult reports, nor do I have a copy of my surgical report, about which I am intermittently curious.

      That's all that comes to mind for me so far. Thanks so much, Avila, for tackling this very valuable subject. I look forward to your report.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon May 06, 2013 at 08:55:08 PM PDT

      [ Parent ]

    •  Ok, here is input from a Luddite (4+ / 0-)
      Recommended by:
      Sara R, peregrine kate, ladybug53, Avila

      ~don't scan or zip
      ~don't care who has access to my medical records
      ~imaging seems outdated quickly
      ~no one seems to be able to read the notes except the one writing them.
      ~I can sum up my condition and history in 2 minutes including allergies
      ~when I reach the point where I can't remember any of this my therapist seems to think I won't care.

      But then I am not one for milestones, benchmarks or memorablia. I was working with a woman who is, well, a hoarder. Maybe this is because of brain cancer but it seems to me she has more than 11 years worth of stuff in her apt.

      She keeps getting kicked out because of hoarding. She asked what I did with old photo's and was horrified when I told her I throw them away.

      I do see a day when all medical info is connected. (Isn't it with Medicare?) And that seems efficient, but you know I have cat videos on YOU TUBE to watch and have no time to organize such things. ;-)

      Tracy B Ann - technically that is my signature.

      by ZenTrainer on Mon May 06, 2013 at 09:47:09 PM PDT

      [ Parent ]

  •  Outstanding topic Tonight PK (4+ / 0-)

    Over the past year I found that for myself, it was very helpful to keep track of every one of my mile stones as I reached them.

    I think it has been a coping mechanism to adjust to the shock of being diagnosed with "LUNG CANCER" that dreaded (for smokers and former smokers especially) guilt-ridden  diagnosis that plays into the instinctual Catholic guilt that is in my genetics already.  LOL

    Now that I am on "the other side" of the diagnosis and done with treatment I now track my gym accomplishments.  It helps me get a sense of how  I am doing with my healing.  As I have shared before I began working at the gym again on March 6th (30 days after surgery) until 3 weeks ago all I was allowed to do was walk in the treadmill. In that 6 weeks of treadmill only I was able to increase my speed on the treadmill from 0.5 MPH to 0.7 MPH.  I still needed to use supplemental oxygen with the flow of O2 oscillating between 2.5 and 3 Liters/Min.   sessions began at 20 minutes duration in March and as of 3 weeks ago I could sustain myself for 30 minutes.

    For the past 3 weeks I have now been able to do work not only on treadmill time but also stationary bicycle as well as ergonomic arm-bike.  Now I can walk at a 1 MPH pace while needing O2 flow at  only 2.5 Liters/min. I can sustain that speed for 30 minutes now.  

    The other thing that tells me that I am getting better? I went to see Iron Man 3 last Thursday evening ,  usually I need to use one bottle of Oxygen while I am driving to and from and a separate bottle new bottle just to watch the movie with.  The night of Iron Man 3? only 1 bottle the whole time. In fact there was significant periods of time during the movie when I turned off the bottle completely and could just watch the movie.

      My lung is not yet strong enough to support my body without supplemental Oxygen but it is making progress.
    Progress is being made, slow and steady progress.  

    So that is my story and I am sticking to it. LOL

    Oh and about my CT Scan and oncology follow up?  a single (NOT growing) node shows up on the right side of my chest as it has for the past 5 months.   He was unable to say those magic three letters (NED) .  He said I don't want to see you again until August, so that is what I am going to do, live my life and see him in August.  nods my head emphatically

    "If you can't breath, nothing else matters"
    DH98

    Life is not a problem to be solved but an adventure to be experienced.

    by DarkHawk98 on Mon May 06, 2013 at 09:23:27 PM PDT

  •  It's more about "getting back to normal" for me. (2+ / 0-)
    Recommended by:
    peregrine kate, ladybug53

    My first deadline was just getting to that last chemo treatment.  I kept logs; I counted days, I looked forward to being able to eat and drink things again.

    That passed, and then my neuropathy really set in.  Then I had PT and OT....but now that's done and there's been moderate improvement.  I keep working at it, but progress has slowed.

    Then it was getting to the end of my appointments.  I just had a colonoscopy, and I'm looking at my 6-month f/u with the oncologist already.  (June).  I don't have any "extra" doctor visits just now, so being able to work at my desk in the office for a full week is significant; this is actually something I haven't done in almost a year.

    I work outdoors in the summer - I have a summer job as a kayak instructor for a local retailer.  Last year, that all went by the wayside.  After surgery, it progressed from lifting small things, to moving boats with help, to solo-handling 12-footers two weekends ago as part of a sale.  I'll be back on the water at the end of the month, and looking forward to a full season.

    Then there's my guilty pleasures.  Like many, I suppose, I found some religion after my near-death experience.  It's a religion that frowns on alcohol, but I haven't given it up entirely.  No more hard liquor, but I still have beer and wine.  And finally...don't throw bricks at me; when the weather was warm enough, I went out back and sparked up one of my puros and enjoyed a cigar for the first time in almost a year, too.  (I didn't get that kind of cancer...I  know, I know.   But I've cut way back on that, too.  Everything in moderation, right?)

    It sure is odd.  The "ordinary" things we all took for granted in the before time become significant and even celebratory events after.

    I prefer to remain an enigma.

    by TriSec on Tue May 07, 2013 at 06:04:45 AM PDT

    •  Sounds like you are making steady progress! (2+ / 0-)
      Recommended by:
      ZenTrainer, ladybug53

      and finding lots of ways to gauge it for yourself. How great for you, to be on the water all summer like this. I imagine it must have been hard to be away from it last year.
      I agree, ordinary and simple pleasures become much more weighty afterwards.
      Glad to hear you're doing so well.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Tue May 07, 2013 at 07:32:30 AM PDT

      [ Parent ]

  •  Late to the party again (1+ / 0-)
    Recommended by:
    DarkHawk98

    My biggest benchmark was when my wife stopped being mad at me for being a stubborn jerk. After she worked so hard to get a doctor (surgeon) to realize that a guy who hadn't been to a doctor in over thirty years and was called "Iron Man" (years before the movies) was actually sick she would be damned if I would go and die on her. So when I didn't, she was pissed that I would put her through such a fright.
    About ten months after I had surgery, and a couple of months after chemo ended she realized I was going to be around for a while, so she relaxed and stopped being angry with me.
    About then I also got some of my sense of taste back, so my wife's good cooking regained its old allure.
    No one was surprised when I took up all my old activities, although the doctors shook their heads. The kids at school were great.
    Love to all, and you have a great week, PK. I was away from a computer for awhile, but you have been in my thoughts.

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