Small steps lead to bigger steps

Every step counts when you're trying to move forward and that's what I've been attempting to do over the last few weeks. While it's been odd not returning to work, as many of my retiree friends have said, I've been so busy there's been little time to dwell on not working. 

My liver numbers for blood-work continue to be elevated and my tumor markers continue to creep upwards which are signs that the cancer is not settling down in that area.  After I saw Dr. J. last week and the latest round of blood tests returned, she recommends three cycles of the Xeloda and then I'll have another PET/CT to see my status.  It continues to be frustrating and disheartening as I feel so much better than I did last spring.

The feeling better is signs of progress.  I started the exercise course for cancer survivors at the Y.  Four days so far and I'm already amazed at what I can do.  For someone who couldn't walk the length of her house or the library at work without being out of breath in June, being able to do anything is an accomplishment.  They started with an evaluation and no surprise that my lower body strength was limited and my balance is not good either.  So those are the areas that I hope will improve over time.  We do 20-30 minutes of cardio (if you arrive early you do more) and they are slowly training us on resistance machines.  While I've been a bit sore the next day, it hasn't been as bad as I had feared. 

My own markers indicate my improvement too--a successful walk to/from the mailboxes, a trip to Target, shopping the farmer's market on Saturday mornings, going to Petco for cat supplies, standing for one of the worship songs in church, not using the cane when I'm out and about.  All things I couldn't do in June or July.  Slowly testing myself to see what else I can do.

Finally, despite Kaiser's slowness in processing the order, I got my compression garments this past week.  It's like trying to stuff a sausage for some of them, but I wore them for Wednesday's exercise class and could tell the difference.  I met with the physical therapist and she recommends wearing them for exercise but I don't need them everyday.  If I fly, travel to high altitude, decide to do heavy cleaning or see an increase in swelling then I need to wear them more often.  She remeasured me compared to when I saw her in June and my thighs are down 7 cm. and my arms are down 3 cm.  Just the exercises, lymphatic massage, and discontinuing steroids and Taxotere have helped tremendously. 

So I will continue to move forward living my life and being grateful for these small steps that lead to bigger ones.  Someone asked me if I had any travel plans since I'm not working.  I haven't gotten to that point yet but maybe soon I'll be able to plan an adventure.  There are still some details to work out in regards to work and eventual retirement but that's a September task.

As always my thanks to all of you who have sent encouraging messages, prayers and reached out to keep me busy so I don't dwell on the negative.  It's not always easy living life but I know that so many have their own challenges and this just happens to be mine. 

Changes

This is a difficult post to write and it may be a bit rambling so forgive me.

As most of you know, I had a difficult spring with breathing issues, swollen feet, ankles (entire legs), difficulty walking and functioning independently,  I managed to close out the school year using limited days and limited function with the hope that summer break would be time for rest and recovery.  When I met with Dr. J. in June I opted to discontinue the Taxotere as I believe the drug was contributing to my symptoms.  I had a physical therapy referral to determine if lymphedema could be the contributing factor.  The Physical Therapist confirmed lymphedema in both legs and my left arm.  Another referral for compression garments and exercises to do regularly and hopefully this could get under control.  I'm still waiting on the compression garments but the exercises have made a significant difference.  I've seen the PT three times and she is pleased with the progress.  For my colleagues, small world moment, she's a 2005 MHS graduate but the teachers she recalls have all retired.

Mom and I departed for Oregon and while I love the southern coast it was too soon to make such a trip. (see previous post for a bit more).

On July 18th I had my PET/CT scan.  Unfortunately, the results were not positive.  Lymph involvement above/below diaphragm, cracked ribs, and increased liver activity.  All of which could explain issues with breathing and lymphedema.  It also brought the realization that I cannot continue working full-time. Mentally, I could do the job but physically I can't do it to my own standards.  Coming home exhausted and stressing about the failures (most of them in my own mind) means it is time to let go.

I had hoped summer would bring good news and healing but it did not.   I met with HR and am taking a medical leave to begin school.  I have enough sick leave to take me to the first of November without impacting my finances.  Then what's called sub differential time kicks in where the daily cost of a sub is deducted from my pay although having contributed to our catastrophic leave bank and disability insurance will help.  It is unlikely that I will return to work regardless as I will move towards retirement.  This has been a difficult decision and I've shed many tears over the last couple of weeks, but I know that it is the right one in the long run.  It just isn't the way I would've chosen to leave.

What's next?  After meeting with the doctor, I'm repeating an oral chemo(Xeloda) that worked for about 6 months a few years ago.  It means adjusting to side effects again--nausea, appetite changes, fatigue, gastrointestinal and hand/foot issues.  I prefer not to go into the TMI details but suffice to say side effects are gross, Treatment options are limited at this point after almost nine years.  The new ones that fit my sub-type I've tried.  Some I can't try because my genetics don't match up.  Doctor says it's not time for Hospice and that she'd be straight with me when it is time.  Reality is with limited options there isn't much else that can be done.  This is where I  rely on my faith to keep me going forward.  I've said before I haven't found an expiration date stamped anywhere and I just don't feel like it's "time".

The Physical Therapist has encouraged me to take the Live Strong Live Well exercise course for cancer patients at the YMCA.  It's free and runs two days/week for twelve weeks.  I've known about it, but since it was during the day have never been able to participate.  I've signed up for the Monday/Wednesday session that begins August 12.  It will get me out of the house two days per week for certain.  I will continue to go to Cancer Carepoint for my support group every other week.  That group of women and men have been invaluable and they assure me I'll adjust to not working.  I will teach an online section for Mission this semester (pending enrollment). Once I make the retirement decision and figure out the date, STRS rules require that I not earn income from education for 6 months so will have to take a semester off or give STRS my money.

As I've said before I'm so grateful for the words of encouragement and support that so many of you have provided.  I'm not great about reaching out myself to make things happen, but know that I will need some "social stimulation" as time goes on--meeting for coffee/tea, possibly a meal (side effects depending) or a movie can keep me going.  I don't walk fast or far, but a slow walk in nature would be nice too as I continue to rebuild my strength.