Closing Remarks on my Cancer and Lymphedema

I was pondering my title for this last blog and wished that everyone who had cancer had a chance to put in closing remarks on their cancer but that is just not the nature of this disease.  I lost 2 friends just this last year to cancer (brain tumor and colon cancer) and had 2 other friends (both with lymphoma) beat it and are still with me.  You just never know. 

The statistics were against me (and still are) but so far it has been 5 years.  Still alive.  Still grateful to have a new morning to wake up to each and every day. 

Thank you, God.

So for my final blog I thought I'd share a bit about the repercussions of my cancer:

1.  It took months to recover from the chemo and the depression.  I still get winded when working in the yard or hiking with my husband.  For our 33 wedding anniversary we decided to hike Half Dome at Yosemite.  4,000 feet increase in altitude over 7 miles.  We made it half way up the sub dome before I bombed out - altitude sickness - even after months and months of preparation.  I realized on that hike how much damage the cancer had done to my lungs as I struggled up the mountain.  You just never really get it all back.  My kids say that I look much older than I am.  Sad.

2.  The cost.  I had great insurance but there are still financial repercussions from having cancer.  Whether it's co-pays, prescriptions, special food or just gasoline to treatments.  It all adds up.  We had to sell my Husband's fancy 1950's pickup truck to pay for all the extras :(  Fortunately we had a fancy 1950's pickup truck to sell, some aren't so lucky.

3.  The on going issues.  First, is the medication that I have to take for the rest of my life.  Arimidex, which is an anti tumor medication for women who are in menopause, is the drug of choice.  At first it was $400 per month but now they have a generic version that my Oncologist says works just fine.  Thank goodness. Second, is the possibility of never getting health insurance again if I leave my job (or if my job goes away).  No one will take me.  So if that ever happens I will live my life at the county hospitals until I reach Medicare age - if they still have it.  This is a constant fear.  Much as I hate President Obama's health care (since I would have been in the 'no' category for any treatments) I still think that everyone should be able to get health insurance - reasonably priced health insurance.

4.  Finally, Lymphedema.  This is the condition that my Surgeon was afraid that she was condemning me to because of my lack of lymph nodes there would be issues with drainage of my arm.  I did pretty well for almost 3 1/2 years after surgery.  My arm looked fine and then one day -

Yup, that's what it looks like.  Stinks.  I was having dinner with my family (including my Brother) when my Brother said 'Sis, why does one of your arms look bigger than the other'.  And I just knew.  Rats. 

So I contacted my Oncologist who referred me to a Physical Therapist.  At first it was just my arm and then after a month my hand abandoned me and decided to go over to the other side and now it's pretty much my whole left side.  So I get to wear a custom sleeve with a big compression pad in it and this pretty glove.  Actually this was my first glove, my later ones were my skin toned.  Although I do like the dark one since it shows dirt less.  Still looking for ways to bling it up a bit :)

I have to be candid with you as much as I do not enjoy having Lymphedema - I would hate having cancer more.  This is so something that I can live with and hey, I still have my arm.  Wooohooo for me :)

Truly - Wooohoo for anyone that has beaten cancer or is battling cancer or is a caregiver for someone who has cancer or well you get my drift. 

Thanks for reading - if you have any questions of me or just need someone to talk to about cancer, I would love to hear from you.

Enjoy!

Cancer - Chapter 10 (Only One More to Go!)

So the last blog dealt with the cancer being gone from my lungs but me still having a large tumor under my left arm.  The Oncologist didn't want to do surgery and was hoping that the continued treatments with Herceptin would kill that final tumor.  No such luck.  Finally in March we threw in the towel and opted to have surgery.  First came a PET scan to make sure that everything was hunky dory awesome and that the tumor under my arm was really the last of my cancer. 

I had never had a PET scan but it is more definitive than a CT Scan so off to the little trailer that they drag from facility to facility for the scan I went.  I came and they pumped stuff into me - something radioactive I'm sure.  I waited in a dark room for several minutes (don't remember exactly how long) and then into see the scanner.  Freak out!  Okay this isn't your average donut - this is a tube.  A long tube.  I am not a long tube person.  I have trouble with just the donut.  But I was here, stuff was in me and I was going to do this come heck or high water.  So I closed my eyes and told the tech to tell me when my head was out of the other end and in I went.  The whole scan probably takes about 20-30 minutes and I had my eyes closed for a good half of that.  But in the end I made it (Rocky music here). 

So it was time to wait . . . again.  Have you noticed a pattern here.  90% of treatment seems to be waiting - waiting for an appointment, waiting for prescriptions, waiting for scan results.  So we waited knowing that everything hung on this scan.

Clean.  Clean, clear and normal.  Lungs were great and the only other tumor was under my left arm.  Time for it to go.

I scheduled surgery for my Daughter's birthday. On purpose.  I knew she would be at Disneyland with friends - the plans had been made long before.  Of all my family she had had the toughest time with my cancer.  I wanted her out of the way and where better to distract her than the happiest place on earth.  Score one for Mom :)

Final issue was that my Surgeon didn't want to do the surgery.  She felt that I was Stage 4 Metastatic  and she didn't want to take a chance on me having to live the rest of my short life with Lymphedema (more this happy condition later) but after several conversations with my Oncologist and understanding I really was cancer free except this last tumor she finally agreed to do it. 

So on May 5th, 2008 I had a lymph node dissection.  They went in and removed the tumor and scrapped away as many lymph nodes as possible.  I came out with a arm hole (not an arm pit) and a drain.  Have I said before how much I hate drains?  Well, I hate drains.  Not only that but 15 days later my lovely husband and I were scheduled to be at the Grand Canyon for our 30th wedding anniversary.  Wooohooo for me :(  

Well the drain came out on time and I was off for several days of travel and some beautiful vistas in southern Utah and northern Arizona.  Saw the Grand Canyon - one more thing off my bucket list.  And then home to heal.  I should also mention here that there was a lot of pain and discomfort attached to this particular surgery and in the end the Surgeon prescribed compression sleeves to help with the healing. Loved them - they supported my arm and really helped with the pain.

When I visited my Oncologist in June I was surprised by the next item on my 'Jan must never gets cancer again' list.  Radiation.  I had not had this on my first go round with Cancer so I really never considered it for this one.   Kaiser has a deal with an outside center to do the radiation so I had a pre appointment with scan and prep to start my treatment in August.  I had to delay since I would be gone for a whole week in July to volunteer at my Church's Young Woman Camp - I had been doing it for years and wasn't about to give it up :)

So when I arrived in August first they made a form for me to rest my arms on (over my head) while I was going through the machine.  They give you a very precise amount of radiation in a very specific area.  The form helped me to be in the same position each and every time I went in.  Then came the one thing I thought I would never do in my life.  Tattoos.  I have three.  They are about the size of a pin dot but they have to do it since you will be doing treatments every day for a six week period and any other mark would disappear after just a few days.  The mark gave them points for the machine to line up with on my body.

Then they started the treatments.  Monday through Friday at 4 I would drive to the clinic, 30 minutes away, and they would shove me through the machine and then I would drive home.  I would apply the salves they gave me to keep me from burning and I had to wear a soft sports bra.  I did great.  No burns.  I was thrilled. 

At the end of 6 weeks was done.  Saw my Oncologist again and was put on a pattern of appointments (which I still have to this day) and have gone on with life.  Sort of :)

Final blog on Cancer and Lymphedema and my Micheal Jackson Glove.  Link here :) Final

Cancer - 9th chapter of the Saga

I apologize for missing some time on my blog but we had a bit of sadness recently with the passing of our old dog, Dallas.  Our home has just felt empty.  As empty as our hearts.  So it just wasn't in me to write the past couple of weeks but a week ago Friday we got a new addition to our home in the form of Pippa, an exuberant 3 month old lab mix puppy.  As you can imagine our home has been turned upside down.  But it's a good upside down.  Life goes on.

When I left the last cancer blog I had passed through the experience of having depression.  I have to admit to you at this point the the depression stayed with me for almost a year.  Even after all the treatments were done.  Some days I would cry and others I would just carry this incredible sad feeling with me - it just varied but it did get better over time. 

The treatments just seemed to go on and on.  I had started way back in June and now Thanksgiving was approaching.  Six Long Months.  My body was exhausted.  I hated eating since the depression and the metal taste in my mouth had totally sunk my appetite.  I also had extreme teeth sensitivity to temperature.  If I ate anything even slightly cold I would get shooting pains in my teeth.  My weight started slipping a few pound till at one point I was down about 20 pounds.  I wasn't a large person to start with but I wasn't skinny either so I was handling it okay.

The final treatment came just the week before Thanksgiving with a CT scan planned the week after Thanksgiving.  As I went to my last treatment I found that my body had developed what I thought was a rash.  When I arrive at treatment, cheered in the thought that this was my last one, I showed my rash to the nurse.  'Oh, Honey, your done' she said.  What, No this is my last treatment.  'You have shingles'.  My poor body had given all it could and had developed shingles.  The door had shut.  I was done.  I can't tell you how frustrated I was at that point.  As much as I hated getting treatments - This was my LAST ONE.  And I wanted it - I want to finish it all.  But I was turned away.

My Oncologist sent a Rx for me to treat the shingles and sent me home.  Oddly enough within 24 hours my shingles were already drying out and I was well on my way to recovery.  For those of you who haven't had shingles I will let you in on a weird symptom of the condition - it only forms on 1/2 of your body - either the right or left.  Mine was on the right.  It looks like a really bad rash and is from the same family as chicken pox.  Also once you have had them - your done, like chicken pox, never to have them again.  Odd blessing.

So the next week was my CT Scan (with the banana crap).  Once again I was shoved through the donut and came out to wait for the results.  Then came the email and lots of crying in my office.  Metastasis in my lungs was absolutely and totally gone - only thing left was the tumor under my left arm.  Wooohoo, it worked!

The Oncologist decided to continue my Herceptin treatments hoping that that would kill that last tumor.  So every three weeks I went back to the chemo lab for an infusion of Herceptin.  After three more months there was no change. 

Next time - surgery, radiation and my Michael Jackson Glove :) Next Link :) Part 10