Starting Tuesday…..rather than Monday!!

In December I met with a Physical Therapist who informed me about the lymphedema I now have for the rest of my life due to the surgery I had back in July.  1 person out of 100 develop lymphedema after having robotic surgery for cancer…for me it is a result of removing many lymph nodes from my abdominal area.  They remove them as that is the first place uterine cancer would spread.  So to make sure there is no cancer there… they remove them.

 Lymphedema is swelling.. in my case, my legs, especially the left leg.  Feel free to look it up on the internet…  Don’t look at the pictures…as they may gross you out….but rest assured if you do look, my legs are far from those pictures and I don’t intend on letting them get that way.

I have never understood what lymph nodes do for the body….until now.  They are important little nodes to have.  However, now that I have lymphadema… support stockings, bandage wrapping, PT exercises…will all be a daily routine for me.  I guess I will be more in touch with my body than ever before… we will have to become friends!

I admit I am not a very good patient…  I still have not developed a routine of doing the lymphatic massage two times a day…nor do I wear support hose during the day…and often don’t wrap my legs at night.  But after a few days of neglecting all these… my legs get swollen and hard and eventually hurt. 

Just the past couple of weeks I decided I needed to step down from some volunteer work and focus on getting into the habit of taking care of my body.  So I’ll start on Monday… no wait… maybe that is when I start my diet… no perhaps it is when I start my new water class.  Oh for goodness sakes…guess I will be starting a lot of new things to get my physical body back on track.

Have you ever promised yourself that you would start on Monday… I am thinking with all the failed Mondays I’ve tried… perhaps I will start on Tuesday to make this different.  So here’s to Tuesday!  Do you need to start something come Tuesday?  Join me!

See you in September…see you when the summers done…

WOW… September arrived so fast…  Well, I am ready to get busy again….  It has been 6 weeks since surgery and I am doing very well.  I still have a PIC line in my arm for the Antibiotics and will hopefully have that removed next Tuesday.  The doctor removed the drainage line yesterday…Yeah!!   Mr doctor told me that it could take six months for my body to heal completely….but I am free to do most anything now.  I am gaining more strength everyday and sleeping very well.

My sister from Indiana visited me for a week.  It was so nice to have her company and help. Thanks sis!

 The following week my daughter and two grandchildren came for a visit.   Mary pampered me and made sure I didn’t lift a finger….  I read a lot of children’s books to Elizabeth and Evan….what a blessing.  Having company helped the days go by quickly.  Thanks Mary!

What now?  I see my Oncologist on Oct. 13th.  Please pray that the lymphatic fluid stops producing.  There is a slim chance I could get fluid build up again…and we don’t want that!!!  I gained around 17# of fluid post surgery..but then lost that fluid and then some  totalling 30#… a very good thing.   

Everybody is getting back into the swing of things now that September is here….   So I hope to see you now that summers done.  I’ll start writing about my mom’s cancer story in future blogs— you won’t want to miss it.  It is an amazing story!

Blessings to each of you….

Watermelon delivered…under unusual circumstances!!!

I am sure you have been wondering where or why I haven’t written on my blog as of late.  Well, the “watermelon” in my stomach got bigger after my last blog and I called my doctor’s office on Monday a.m. 8/2.  They told me to go to the ER Room for assessment as that was the fastest way to have tests run etc.

So off we went to the ER that Monday morning.  I was in extreme pain and had no idea what was going on…. I was admitted to the hospital late that afternoon and was finally released this past Sunday, August 8th to go home and receive Home Nursing care for two weeks.

I’ll save you all the details…but  will share a few reflections with you I experienced this past week.  But first let me say once again, “Thank God for his healing touch and listening to the many prayers of those around the world for me.”   I literally was so sick, I thought I was going to die and go to heaven…. not a bad thing…but sad as I didn’t want to leave my family yet.  I was so sick…I couldn’t talk much on the phone or even think straight. 

The doctors were uncertain what was causing the pain and bloating, fever and high white blood count that reached 23800…but they definitely knew there was an infection somewhere.  So they started treating me with antibiotics and changed them depending on whether they were helping or not.

After CT Scans, Ultra Sounds and who knows what…. by Wednesday the fluid in my abdominal cavity had formed an abscess–three of them.  These were caused by the removal of my lymph nodes which were still producing fluid.  They implanted a drain to help remove the fluid, (which is still in today).  They thought the fluid would look infected…but it was as clear as could be…no infection.  The doctors were not sure if it had been infected and antibiotics had already cleared it up or perhaps there was another source of infection.

Because of this unknown, they did not allow me to eat from Monday through Saturday noon in case they had to take me back into surgery.  They patiently waited to see what each day would bring. 

My turning point was on Thursday when they placed the drain in the abscess…. I started to feel better immediately and even went off the pain pump I had been squeezing non-stop all week.  My husband had been praying for me every day and on Thursday God told him I was going to be ok.  Also, my daughter Mary had the same assurance from God that I was going to get better……  Our priest had also prayed over me “The Anointing of the Sick”…so I was covered!    Isn’t it great how God often confirms something he is doing….. Thank you God!! 

On Friday the Doctors came in my room with a smile and said, “I’ve never seen a turn around so quickly before in any patient.”  We just can’t figure it out.”  In my mind I thought….”Ah yes,  I know the Great Physician who can move mountains.”

The doctors determined I didn’t need surgery and allowed me to eat my first soft meal on Sat. noon.  OK… I never was really hungry…but I must tell you that my body craved good food…. apples, strawberries, watermelon…even water ( I wasn’t allowed to swallow water all week).  Amazing how our bodies know we need good foods. 

Have you ever had your tongue stone dry… is a scary thing.  In the middle of the week my tongue was totally dry…like sandpaper… my gums around my teeth were soft and tender….I felt like I was rotting from the inside out.  (OK too much info…sorry)!  Probably from all the meds I was being given.    I was even hallucinating at times at night…. seeing bugs or things that weren’t really there…..scary.

The staff at UW Hospital were amazing… I was in the right place for my condition.  Other departments were called in on my case…Internal Medicine, Radiology, Infectious Disease …..all came around for a look to advise my doctor.  I was the mystery woman.  There was some thought that perhaps I had  picked up some kind of bacteria in the hospital during surgery…but that still has yet to be solved, in fact, the cause may never be discovered.  But they tested everything under the sun…and nothing would grow in the petri dish.

Since I was feeling better… I  wanted to go home.  I had a normal white cell count and no fever… so they considered sending me home on Sunday.  Sunday came and they said my trip home might  be delayed a day as my white cell count went from 9000 to 12000, but thank God, they let me go home….and here I am today taking if very easy.

Home Nursing care comes in every day to check my vitals and dispense the antibiotic in my pic line…and today I am going to learn how to do that on my own—-(a little nervous about doing this).  They want me to take this antibiotic for two weeks and then they will reevaluate.  My prayer request if that I will be totally off the IV in two weeks.

I still have a lot of fluid build up in my body from all the IV’s etc.   I gained around 15-16# of fluid….My legs are very swollen but the doctor said that would change with time. 

So one day at a time….no lifting….a lot of resting….a lot of movie reruns!  I am still having trouble concentrating when reading…but hopefully the fog will lift soon so I can read.  R&R for the  next 4-5 weeks….I can be still that long???

There were so many thoughts that passed through my mind as I lay in the hospital.  The saying “you don’t know what you have until you don’t have it” is so true.  I must say I had taken for granted many wonderful things in my life and I have taken an inventory.   I wouldn’t wish this life experience on my best friend…but I’ve found an invaluable life lesson because of it.  Everything we have is a gift from God…never to be taken for granted.  Pathology reports show I am cancer free.   For me this time… I got a pass…but even if I had not been given a Cancer Free pass…. or been healed of the infection, God still reigns…..and I praise him for all things.  My hope lies in Him alone forevermore.

For that watermelon that was growing in my body….well, it is gone now…and to think I still love to eat watermelon!!!  A miracle!! 

I will write more reflections as I find focus and hope this will help you to always be encouraged, no matter what you are going through…. God loves you and cares about everything going on in your life.  Why not talk to Him…he is a good listener!!   Blessings, Auntie M

PS… Thank you for all the wonderful cards, flowers, and phone calls as well as all the wonderful food and help around our home during this time.  We are so blessed to have such wonderful family and friends…

Update on Condition

I have not received the pathology reports yet but should within the next couple of days. 

We went to the lake and I relaxed there…didn’t go down to the beach until Sunday.  It was  rough weekend…. almost called the doctor on Sunday but started feeling better by noon on Sunday.  I am still having pain and now realize I am running a low-grade fever.  I just took my temp and it was 101.8 . If I have two consecutive temps within 4 hours that  is over 100.4 then I am told to call the doctor.  Just yesterday I started to take my temperature.  So pray that any infection is healed quickly..

Monday, three of my friends are coming over to do some work around the house.  Light cleaning, laundry, picking garden etc…. I am so very fortunate to have wonderful friends.

Until tomorrow….Blessings,  Auntie M

Watermelon Season….

OK… i feel like i swallowed a watermelon.  Does anybody know how to get this surgery air/gas out of my abdomen….  That is causing most of my pain right now and the doctor said it would go away in 3-4 days…but I am on day 2 and I don’t see any relief yet… In fact I think the watermelon is growing!!   Ouch!!!

Any suggestions would be greatly appreciated… Blessings, Marilyn

Back Home Again!!!

Home is where your heart is….  I am back home in Middleton after having a successful surgery.

I arrived at UW hospital on Monday 5:30 am…surgery was from 7:30-12:30 and I was back in my hospital room by 3:00 pm.  Had a rough first afternoon because of nausea..but they finally got that under control.

The doctor said surgery went better than expected.  He complimented me and said my insides were all in order and he had plenty of room to work…so he was able to remove all the lymph nodes as well.   He only saw on small spot of cancer and said he would call me in one week with the pathology report.   He cannot see with the naked eye whether they got all the cancer….but knowing that the cancer was a small piece is good news. I’ll let you know the report when I hear back from the doctor.

Oh my…I mentioned in a previous blog I might look like a “blow fish” after surgery, however, my face went down in the recovery room and now I just look like I swallowed a watermelon which should go away in a few days.

I thank you for your prayers, cards, gifts, meals and thoughts this past week and I ask that you continue to pray that  recovery goes well with no blood clots or scar tissue.

I am thankful to all my doctors for listening to me and my symptoms and following through to get this slow-growing cancer addressed.  So my advice to you  is… not ignore any out of the ordinary symptoms you might have…it could save your life. 

Well, I am a bit sleepy…should probably go back to sleep… but I am still on hospital time…waking up every 2 hours!

By the way, I was walking out of the hospital by myself 10:30 am this morning!  Only 29 hours turn around… we talk about fast food lines…well this was a fast surgery line!!  “Surgery to go please!” 

Sure feels good being back home again!  Thanks be to God.

Blessings, Marilyn

Countdown….3 days until surgery!

Once again, thank you for your words of encouragement and support.  It really does help keep things in perspective during the waiting period.

I’ve been busy all week preparing for my surgery recovery.  Grocery shopping, cleaning, doing those things I’ve put off for so long.  I am motivated to get things done… of course, I’d rather the reason not be cancer.

My dear daughter Mary volunteered to set up the care calendar web page so my friends and family can sign up to help by bringing meals, help with the garden etc.  Thank you in advance for your kindness and help and thank you dear Mary for your sweet thoughtfulness and help in this way.  You’re the greatest daughter in the world!

Today, I thought I would share a little about the surgery. They are planning to do robotic surgery on me…. reminds me of the Jetson’s cartoon I watched as a teen.   The doctor controls the robot to make 4-5 small incisions on my abdomen wall and then it will remove my uterus, fallopian tubes, ovaries, cervix and abdominal lymph nodes (at least the ones they can find).   They also take out the lymph nodes because this is first place uterine cancer will spread.   

If the surgery goes well,  I  will be in the hospital on Monday evening and released on Tuesday with an expected recovery time of 2 weeks.  If they end up doing the surgery the old way…with a large incision, my stay in the hospital would be 4-5 days with recovery time of 6 weeks.   It will take one week to get the pathology report back.  If it is clear– I will not need treatment.  If the cancer has invaded more space…then they will discuss a treatment plan.

Removing the lymph nodes can cause the following side affects: nerve damage in legs (already have that from knee surgery), edema in legs (who doesn’t have some swelling in their legs at my age?), cysts forming where lymph nodes once were, and  1-3% of patients develop “elephant leg” where one leg will swell and be that way the rest of your life…needing wrapped every day.    Please pray that I have limited side effects from the removal of the nodes. 

My question… what if there is a power outage????  What does Mr. Robot do then?  I am sure there is a back up power source, but new technology creates new issues.  However, recovery time is better, less blood loss, and not as invasive….all good  things.  Of course, we had storms this evening and lost our power.   I imagine surgery by candle light would not be a good thing!!

The other thing that I am glad they told me –  I will look something like a blow fish after surgery.  In other words, because they have my head lower than the rest of my body during surgery (sorta like a backwards handstand) ….my face will swell up like a big marshmallow.  No pictures please!!  Alien on board!  

There is a very positive side of this surgery besides of getting rid of the cancer……. I will be 5# lighter. 

I am heading out tomorrow a.m. to our lake cottage and will spend two days like a Hippo cooling in the water. 

My sister posted something today on Facebook that I really like and I will close with this…

At times the Master leads where we’d rather not be led.  We fear because we cannot see each step that lies ahead.  Have no fear, for our kind Lord wills only for our good.  We’ve but to place our hands in His and follow as we should.  –Selected

Blessings,  Marilyn