My Amputation Journey

As you can see, I did not make it back when I said I would. I have NO good excuses. None. What really matters is that I'm here now!

I wanted to talk about my wheelchair. And, post some pictures of what I have and what I need. And, I want to explain a bit about why I am in a wheelchair. Here goes...I cut my leg while shaving and it became infected and had to be amputated! Sounds silly? But, seriously...I DID cut the edge of an old skin-graft on the inside of my left leg. It was a tiny little cut, barely bled. Within a week it became a little white ulcer. A week later and I had a bad case of Cellulitis. THAT was bad! I was admitted to the hospital for IV antibiotics, the first of 12 hospitalizations over the next two years. I also had several surgeries and underwent some aggressive wound care for over two years. I'm going to show a few pictures of my journey to my eventual amputation. Some of the photos are graphic, so if you get "urpy" about medical stuff, then you may want to go right on past them!

*My last surgery to attempt saving the leg. They removed all of the tissue down to the bone in hopes that healthy tissue would grow back. It would then be covered with a skin graft.


As you can see from the photo, it was done in June 2006. After this surgery I developed Necrotizing Fasciitis. It was described as a "flesh-eating" bacteria. After this surgery things went downhill very fast. The next picture was the last photo taken before my amputation. You can see in the picture that it had gone down through the Achilles Tendon and at that point the leg was no longer viable. You cannot walk, stand or even rotate your ankle with such a severely damaged tendon.



The day after this picture was taken, I lost my leg. It was the only option and after all that I went through in the attempt to save the leg, I was ready to do it. As I look back, I now know that it probably should have been done much sooner. But, it's never easy to make that kind of decision and I guess it had to get to the point it did, in order for me to be "okay" with it. This next picture was taken the day after my surgery. I looked awful ...and drugged up, but hey, I was able to give a Peace sign!!



After nine days, I went home with a cast that went almost to my hip. On my first return appointment, THIS is what they found when the cast was removed.







Within 15 min. after these pictures were taken, I was back in surgery. I stayed in the hospital for almost 3 weeks, doing IV antibiotics...again. Here's another picture during that time. As you can see, I was feeling no pain! They had me on a lot of morphine and I don't remember much about that time!



Once again, I was sent home with a cast for about 1 week. This is my leg when the second cast came off. That one spot got me another 3 weeks in-patient! Oh, Joy! I was NOT happy! Back to surgery I went!





I spent Halloween and Thanksgiving in the hospital and was discharged shortly before Christmas. Never have I been so happy to be at home for the Holidays!



After that last hospitalization, I came home and soon realized that my life had changed...permanently...Forever. It was very difficult and I was sad. After some adjusting and a few falls, I found myself becoming angry. That is when I found myself crying out to my God...asking "Why?". As I wept in my wheelchair one day, I "heard" a voice say, "Karen Jo, You CAN do everything you did before...only differently." And, in that moment, I knew that I COULD! But, that anger and lasted for short period of time.

From that day, I began to do more and more. I didn't have a support system of people to help me, so in reality, I needed to be able to take care of myself independently and many times I went out on a limb and did things that I'd never thought I could do. I WILL say that there were a few people who I could call when I just couldn't do something myself. And, there are 2-3 who I could rely on for help. I am so Thankful for my friend/Sister in Christ, Tammy! She bought cat food for my cats and even payed a bill that I was behind on. Thank You, Sweet Tammy! Also to my neighbor & her daughter who came across the hall and fed my cats everyday! (I missed them, so much!) At times like this, when you need the most assistance, you really find out who your friends are!

Soon, I was driving myself everywhere I went. I would wheel myself out to my car, open the back, fold my wheelchair, pick it up & put it in the back, close the back, grab onto the ski-rack on top of my car and HOP to the drivers seat and off I'd go! My wheelchair weighs about 47 lbs., so it's one of the heavier chairs out there. In the process of taking it in & out of the car, I tore my Rotator-Cuff in my right shoulder. To this day, I continue to have great pain in both my shoulder and my elbow. Fortunately, someone came up with the idea of putting down the back-seat and now I just lift it right behind my seat. Much faster & convenient, but the wheelchair STILL weighs 47 lbs.!!

As for my wheelchair...well..it stinks! It is much too large for me. The tires are very cheap (hard plastic) and that results in a lot of spinning when I'm out in the winter weather. That's about 6-7 months of the year here in Minnesota. It is almost impossible to get through snow and I have found myself stuck in the middle of a parking lot more than once! The seat and back are made of PLASTIC and they freeze when it's really cold outside. Due to that there are cracks in the plastic. And, the left wheel randomly pops off and I end up on the ground! Need I say more?? Here's a picture of the chair I have now. (This is a picture of the chair when it was new.)



And, this is the chair that I need. It's smaller and weighs much less. And, it comes in PINK! : ) It can be folded and lifted in the drivers door and put on the front passenger side, making it more convenient and also putting less stress on my body!



So there's the story of my amputation journey. It's been 3 years and still there are problems with my leg. I'm fighting an infection right now, due to wearing my prosthetic leg. I wore it for 15 min., last Thur. 10/05. Only 15 min. and now my stump looks like this. Please, keep me in your prayers, as this can quickly turn into something life-threatening. I have been hospitalized with MRSA 4 times since my amputation.







I am going to get those items up soon! I've determined that this is kind of like a "Living Estate Sale". I want to know where my belongings go! I have strong feelings and concerns in regards to what would happen to my belongings should I die unexpectedly. I apologize if that sounds morbid, but it is my reality. I think most of us, if we really thought about it, would feel uncomfortable about having others come into our homes and going through our belongings.

This may sound lame, even mean, but I do NOT want my family to come into my apartment to "pack up" my personal belongings. I have things that I would like to give to each person in my family. But, they choose to not visit me. To not bring my great-nieces and nephews to visit me. And, the thought of them going through my jewelry and other special things, saying "Ooh, I want this!" or "This is mine!." EERRR... I feel like THIS...if they can't take the time to visit me when I'm very much alive, to bring the kids to spend time with me, then I don't want them to take my things when I'm gone.

I would love to be able to give them something special. I only want to love them. To hold their children. To tell them stories about their childhood. To brush the girls hair. Polish their nails. It's the simple, little things that I long for. And, it hurts me deeply, deep in a place that only Family can touch.

I love children. I was a Nanny for many years. I did both live-in and live out. I cared for children of all ages. Short term and long term. Total strangers came to know me and allowed me to take care of their most precious assets! But, due to things that occurred in our early childhood, my older sister has made a choice to not have a relationship with me. And, now her adult children are doing the same. The same children that I loved and adored when they were small. I lived for my nieces and nephews when they were little. They spent weeks at a time with me. And, I lived with both of my sisters when they went through divorces. I was there to support both them and their small children as they dealt with the trauma of divorce. And, I would NEVER change the past. Those times are so precious to me.

Sadly enough, those very children that were like my own, have grown up and all of our lives have changed and grown apart. Now I only have memories to hold onto. I'm just so Thankful that there WAS a time when their parents "shared" their kids with me. I will always and forever have a special place in my heart for them.

Now that I've shared that pain with you, I hope it gives you some understanding of who I am. And, if you have children, maybe they could draw a picture for me. I would LOVE to be "Aunt Jo" to them! I have a friend on Facebook, actually there are 2 friends who send school pictures or painting that their children did for me. So if you want to "share" some of that Joy with me, I'll take it!!

I'm going to end on that note! There's a LOT to process here! It feels good to "say" what how I'm feeling. To share where I've been and where I'm going. And, I can do that here, with no fear of rejection. Thanks...for reading!

Lots of Love!



"People are not limited by their disability, they are limited by a lack of opportunity."

The Terrible, Horrible, No Good, Very Bad Blogger

I tell ya', I suck when it comes to blogging on a regular basis! I plan on doing it everyday! It's always when I'm doing dishes or taking a shower...or going potty! Always when I'm NOT at my computer! My head is filled with thoughts about what I want/need to share and then when I finally do get to my computer, my mind goes blank.

That's kind of the way everything in my life has been lately! I start something, then I see something else that needs to be done, so I start that and soon I have three or four "projects" going. And, I can't seem to complete any of them!

Side Note: I just got in my wheelchair to go get something pertaining to this post and then decided I needed to open the window and on the way to the living room, I saw some food that needed to be covered, so I stopped and did that. See what I mean? : D

I actually went to get a little wooden sign that I bought that says "Have You Ever Stopped To Think...And Then Forgot To Start Again?" Yeppers, that is ME! (I DID get the window open, but the cinnamon rolls are still uncovered!) I will throw them away or better yet, share them with my neighbor lady! I baked them this morning and ate one...with much guilt, by the way. Too many empty calories AND I have Celiac Disease, so I shouldn't be eating them anyways! I will say that it's quiet unusual for me to even have them in my house. It was an incredibly GOOD supermarket ploy. They smelled really nummy! Another GOTCHA from the Big Guns at Pillsbury! Really, I must eat BEFORE I shop! Why is it that I KNOW these things, but do them anyway? I just get too rushed sometimes.

To be truthful, I do the things that MUST be done, when I am ABLE to do them. And, buying groceries is a must do. Even I need food. I have been avoiding going out, due to the H1N1 and other "Bugs". My body continues to be under attack from the cancer AND the treatments. My WBC is down to 1.1, which means I am not able to fight off ANY infections/viruses, etc.. At my last appointment, my Oncologist said "At this point, You are more likely to "succumb" to an infection and NOT the cancer." (Notice that he said succumb instead of die?) Nice! Needless to say, I am being VERY cautious about good hand-washing and have been going through bottles of hand sanitizer like a crazy lady! Lysol spray, too. And, still NO sign of the H1N1 shot in my area.

As I've been staying inside a lot, I have been cleaning and going through all of my belongings and I have WAY too much "stuff"! If you could see it all, you would understand why I've held on to it for so long! It's not junk! I have several collections. I have Dolls and Angels that I have collected over the years. But, it has come to a place in my life where I realize that I need to "let go" of them.

This is not something new. Early last year, I began to feel that the Lord was telling me to "release" these things. I began to feel like my mind was "cluttered" by all of the objects around me. I also was told that my cancer was Terminal and although that has NOT been the case, I still feel like I need to get my home and belongings in order and under control. So I am working on finding new homes for some of the things I love.

I want to be clear about something. I am NOT giving up, nor am I giving in! I am being obedient in doing what I feel the Lord has spoken to me. I plan on being around for as long as He chooses! I am doing my part in staying away from anything infectious. I am making a serious attempt to eat in a healthy manner, (OK, with the exception of the cinnamon rolls!)

This is the part where I'm going to ask YOU to Pray for me! Please, Pray for Protection from anything that could make me "sick". For Strength, to do the things that have to be done. I live alone and there is no one to help me with things. For Patience and Perseverance, as I wait for me blood tests/labs to return to normal or at least to a place that will enable me to start chemo again. My chemo has been put on hold until then. : (

Nobody wants to have chemo, but the longer I go without it, the tumors continue to grow. I had my last dose 23 days ago. So, Please, Pray for a rapid turn around for my lab values! In the past, I made the decision to NOT focus on my cancer on this Blog, but I have decided that it's time to share more of that with my readers. Back in August, I was told that there were no current treatments available for me unless a Clinical Trial should open. I was very frightened about it, but only two weeks went by before that Trial opened! Unfortunately, my blood counts dropped almost immediately. I am BELIEVING that I will be back on the trials ASAP!

My last scans did show something new. I had been having severe constipation for several months (I know, TMI!!) I had tried everything possible, but not much was happening. When I saw my abdominal scans, I was shocked. There are three masses in my stomach area. Sm, Med., Lg., round and stacked one on top of the other. It looks like a little snowman in there! As a result, my abdomen is HUGE! And, I am very uncomfortable. Because of the size and location of these tumors, my stool is not able to pass through. I am taking some major prescription meds (laxatives) in order to help with that. My diet consists of only really soft foods and lots of liquids. (All the more reason for why that cinnamon roll was both tempting AND naughty!) Hopefully, down the road, the tumors can be shrunk with chemo & radiation and possibly surgically removed.

The other issue is the tumors on my brain stem. Not good! Although they ARE very small, they are extremely dangerous. The brain stem is basically the "control center" of the body. It controls breathing, balance, eyesight and pretty much everything else we do. I mention those three things, because those are the things that I am having problems with, my balance being the most difficult to deal with. I am in my wheelchair all of the time, except when I'm in my bed. I have taken several spills, but nothing too bad. The breathing issues may be due to the tumors in my abdomen pushing on my lungs. I cannot sleep lying flat and have been spending most nights in my recliner in the living room. It's a wonderful recliner, so I do sleep well. (It was a gift from my friend, Arlene. Thanks, R!!)

There are no cures for brain stem tumors. But, there ARE some new treatments to shrink them. One of the treatments consists of placing a Portacath in the top of the head, thus being able to give chemo directly into the brain. This particular port is called a "Ommaya Reservoir". It's a small, drum-like port that's placed under the skin of the skull. An attached catheter goes through the skull into a ventricle (a space inside the brain filled with cerebrospinal fluid). The port is accessed with a needle that goes through the skin into the drum. Chemotherapy is given this way when it is needed to treat cancer cells that have entered the central nervous system. I don't know much about this treatment yet and frankly, it scares the heck out of me! What I do know is that I can't have it done here. I will be going "out East" (John Hopkins) or to MD Anderson in Texas. It would be for a period of three (3) days to three (3) months, depending on the evaluation I would receive once there.

Just typing all of that is scary! It would mean being in a strange place, alone. I would have to leave my apt. and cats for awhile. That is really the worst thing about the whole ordeal! I LOVE my cats and can hardly bear the thought of being away from them! Okay, gotta stop talking about this right now! Making me WAY too sad!!

I have to say that I am a very independent person and I don't like to ask for help from anyone, but I do need some help. I am in desperate need of a new wheelchair. My wheelchair is NOT safe. One of the wheels actually came off while I was in it! So I need to raise some money for a new one. My insurance will not cover a new wheelchair for another three (3+) years, so I'm on my on.

I've decided to put a widget here on my Blog for anyone who would/could make a donation to help me. I don't want to just ask for a donation without offering something back, so I'm going to put up some photos of the Angels that need a "new home". I will put a starting price for them and you can make a Bid. Highest bidder will receive that Angel. There are some other items that I'd like to list, too, so if you are not into Angels, there will hopefully be something you might like! Perhaps this would be a good place to do some Christmas Shopping!!

Be on the lookout for those in my next post. I'm really gonna TRY to do it today. This has been a L-O-N-G post, so I need to take a Break. Thank You, for reading and for your Prayers, as well!

Lots of Love!

There's A New Kid In Town!!!

Dear Friends and Readers ~

Again...I Apologize for NOT Blogging! I DO think about it everyday! Yes, EVERY SINGLE DAY! And, I have many valid reasons for not doing it. Grab your Coffee, Tea or Water, (okay.. or your Diet Coke) and sit back and Relax and I'll fill you in on all the "stuff" going on in my Life!

First off, you only need to look at my last post to see one of the reasons I haven't been here. Oh my, I can Honestly say that losing Lizzie was the absolute MOST painful thing I've ever had to deal with. I know that is going to sound ludicrous to many of you. I've lost my LEG! I've recently lost my BREASTS. But, truly this hurt me more than those two events, only in a different way.

When Lizzie died, my Spirit was broken, my Heart ached so deeply that I felt like there was nothing to live for. Sounds dramatic, huh? But, it's the truth. I haven't had to deal with much death in my life. (Thank You, Jesus!) I've been to ONE funeral in my life. That was the funeral of my 32 year old brother-in-law, Troy. He died 16 years ago. And, that was also very painful for me, as well. But, it was somehow different. I'll share that another time.

I know it is very unusual for a 52 year old woman to have only been to one funeral by this time in her life. Now I DO know people who have passed away, many, many. All of my Grandparents. A few Aunts and Uncles. Even my Dad. But, for reasons that I won't discuss here, I was unable to attend any of their funerals. I do/did grieve over their passing, but there is a part of me that is glad that I was not at those funerals. Death is not easy for me or anyone else and I do know that I will eventually attend a funeral, but I need to really Draw near to my Lord, when those times come. But, enough about death! Just know that I have cried many, many tears, but I am Healing.

I was not the only one who mourned over Lizzie. My other cat, Flora also became very depressed. She stopped eating and withdrawn. So I Prayed about the situation and decided to look for another cat. For both Flora and myself. I searched the local papers and then the internet and finally found a little girl kitten in a town about 45 miles from here. I definitely wanted a female and I wanted to adopt/rescue the new kitten, but it proved to be more difficult than I expected. There were only "boys" in out local shelter, so I searched within 50 miles of home and found this picture.


And, I KNEW that this little one had to come live with Flora & I! I was actually worried that she would not be available, 'cuz she's SO darned cute, but, I made the call and she WAS still there! I had to go see my doctor in that town the very next day, so I made an appointment to go see her at the shelter. And, I knew without a doubt, that THIS was THE kitten I was supposed to bring into my heart and home! There was a huge problem in getting her though. There is a fee to adopt her. A big fee. That I didn't have. $159.00! Still, I continued to Pray about it that night before I went to see her and throughout the next day. And, being a HUGE Believer in Prayer, I took the kennel along in the car. : )

The moment I peered through the glass at all of the kittens, I knew who she was! And, God is SO Good! HE knows my heart and what it needs. The director of the Shelter came in and made a payment arrangement with me! That is not something they normally do, but she said she knew it had to happen. I sat in my wheelchair and held that kitten and sobbed! Sobbed with happiness. And, sobbed at all of the animals that would NOT be adopted and have to be euthanized. And, so I put Sweet "Fauna" in that kennel and brought her Home! She is absolutely Precious and THE sweetest kitten I've ever had! She LOVES her new "Mama" and has adjusted well. Now we have to work on Flora!! She is not a Happy Camper! She is acting like a teenager. Sulking and hissing! But, she's coming around. They are both sleeping with me at night and they're smelling each others rear-ends, so things are lookin' up! : )

Wow! That was long! As for the other reason that I haven't been here is the health stuff...again...still! I actually spent some time in the hospital. And, will be going in again soon. I went to see the Breast Surgeon about what I assumed was "Lymphedema". That's swelling that occurs after a Mastectomy. Swelling that is serious and can be/ is life-long. Unfortunately, I do NOT have Lymphedema. It is actually a recurrence of the tumors they removed at the time of my Double Mastectomy. That is not what I expected or wanted to hear. I had expected to be set up for Physical Therapy. But, instead, I was scheduled for a PET Scan on the following day!

The scan did in fact show that the tumors had grown back and were more aggressive. I also had a CT Scan, an MRI, x-rays and lots of blood tests. This led to being hospitalized. I had several (3) radiation treatments and started a new combination of chemotherapy. While hospitalized they discovered that I also have a large Decubitus Ulcer on the bottom of my spine. Strange thing is that I never felt it! They began treating it and so far it remains the same. : (

It didn't take long for my WBC (white blood count) and ANC (absolute neutrophil count) to bottom out due to the chemo. This put me at significant risk for life-threatening infections. After several "consultations" amongst the doctors, it was decided that ALL treatment for the cancer had to stop. My Infectious Disease doctor told me that I "am more likely to succumb to infection, than to the cancer", and I had no choices left. I was discharged and will be having regular lab tests and continued wound care for the "bedsore".

When my labs reach an appropriate level, we will look at starting the chemo/radiation treatments again. The biggest fear at this time is the H1N1 Virus. I am not supposed to be in a place where there are lots of people. That means grocery stores, Libraries, Hospitals and Clinics. Pretty much EVERYWHERE! It's hard to have to stay in my apt. all of the time! But, I have to do that in order to avoid all of those nasty "bugs" that are everywhere!

Due to my low blood counts, I am extremely tired. I sleep a Lot. I am very lethargic. I don't have even the "desire" to do anything! All of the things I enjoy and "can" do have become a chore. I don't spend much time on my computer, at all. I have always enjoyed reading, watching movies or TV, but even those seem hard to achieve. I LOVE Twitter and Facebook, but I am not able to spend time on those sites either.

Needless to say, this is very difficult on my spirit. I'm not really depressed about this, more like really sad. I don't have any human contact with anyone. Not even on the phone. I don't have any close friends, so I don't have visitors or phone calls. My "family" is pretty much nonexistent. That is really not new, but is becoming more so as the time goes by. It makes me sad, but at the same time it's what's best. Every time there is any contact, I end up feeling despair and angry and hurt. So rather than having those feelings, I avoid it.

I know that every family has "issues" and mine is not immune to that. I do Love them, but I don't like some of them. I'm sure that some of them feel the same about me. I had to make a "choice" to separate from the dysfunction and pain. As a result of that choice, I have also found that I have become isolated from everyone in my life. I don't answer my phone unless necessary. And, I don't call people. And, I need and want to change that.

I know in my heart that it is necessary to have human contact in order to be Healthy. And, I WANT to be a part of friendships. So I'm really going to work on those things! With the necessary physical isolation AND the fact that I choose to not communicate, I DO feel like I am slowly dying. And, that must change!! There is that saying "No Man Is An Island", but I don't believe that! Because I have become that (Wo)-Man! I heard a song one time that speaks about "living like you are dying". Basically saying to treat yourself and those you love like it might be your last day on this Earth. To tell them you Love them, because it might be the last time you see them.

After I heard the words to that song, I decided that it had to become my motto in life. Except that I need to start "living like I am NOT dying"! Because, I HAVE been living like my life is limited due to cancer. I have stopped enjoying life. I have chosen to "stop living". And, I KNOW that I will die if I don't make the choice to LIVE!

On Tues., 10.13.2009, I decided to CHANGE how I am thinking. I realized that I WANT to Live! I want to be Happy! I am going to start doing the things that I want to do. None of us knows how long we will be here and we all need to make the best of the Life that GOD gave us! I want to be able to look back at my life and say "I did ALL of the things that I wanted to do with my Life!"

I have started a list of the things I WANT and NEED to do to fulfill and complete that list to the best of my Ability! I'm want to share some of those things with YOU. Because, right now, YOU are all I have in my Life. YOU are my Friends. You are my Sisters and Brothers. And, I know that I NEED to have you in my Life! Sooo...

I am starting a new Blog. I have named it "PENNIES FROM HEAVEN". I have this "thing" in my life about finding pennies on the ground. It goes way, way back to my childhood. I NEVER, EVER leave a penny on the ground! To me that is one more piece of my wealth. Now I want to start seeing and believing that each Blessing in my Life is making me live a "Richer, Healthier, Happier Life"!

I want to ask you all to follow that Blog, too. I want YOU to Share the "Pennies" that You have found. To Share the "Pennies" that have been given to You...from God, from Your Friends. I NEED you to become a part of my Life. I need to hear GOOD stories. Good "stuff". I Believe we ALL will become RICHER!

This Blog, "Jo's Corner" will continue. This is where I will share all of the things that are happening with my health. It will have good times and the hard times, too. Because, it is so important to get ALL of those things out. I call it "Verbal Vomit". You know how you hate to throw up when you're sick...yet you always feel better afterwards? I think keeping all the "yucky" stuff out of your head or you will get sicker. So you will find that hear!

At "PENNIES FROM HEAVEN", You're going to find Healing!! Healing for YOU and for ME!

Hey You, Thanks for taking the time to read this Blog. But, most of all, for Listening and Hearing me!

Here's the link to "PENNIES FROM HEAVEN"!!

PEACE & LOVE!!

R.I.P. Sweet Lizzie

It's been a long time. Almost one month since I've been here. I admire Bloggers who blog daily. I'm not sure why it's hard for me to blog on a regular basis. I want to, but my life has a way of pulling me in many directions all at once.

I'll start by sharing that my Lizzie went Home yesterday. Lizzie was a vital part of my life. She was my Heart. A huge part of Me. Lizzie lived with me for 11+ years. Today my home and heart feel empty. Except it's not. I have my Flora. She is wandering around, looking for "Sissy". I will grieve for Lizzie, but I will also be here to comfort Flora.

This photo was taken in August 2009. That blue stuffed animal was her favorite "lovey".



My neighbor, LaVaun came over to be with me last night. I made the decision to do the procedure here at home, as I knew it would be difficult and I didn't want to be in a cold Vet's office. The Vet gave me a syringe of anesthesia to give her before he came. She was terrified of him. It was the hardest thing I've ever done! The medication worked quickly and I got to hold her and talk to her for 35 minutes before the Vet came. I did not witness her death, but it was very fast. I wrapped her in her favorite blanket and he took her body.

Despite all of the pain that I felt, there was one thing that will always stay with me. The Vet, Dr. Larson, sat with me and asked me if it would be okay to Pray with me before he proceeded. Of course I agreed and Welcomed the kind, thoughtful Prayer he said. I realize that that was probably not the norm for most Vets, but once AGAIN, my Lord Jesus was with me as I walked down this painful road. I am so Thankful and Blessed to have met this particular veterinarian.

I will close this post with asking for your Prayers...for Peace for myself and Flora. And, I'll be back SOON! Promise!

Peace and Love!

RECOVERY...AT LAST

Yesterday was two months since my Double mastectomy. It has been a long two months! The incisions healed well after the IV antibiotics I received at the local ER. I still have fluid under the scars, but hopefully that will resolve itself without having to have it drained again! Unfortunately, I have been diagnosed with "Truncal Lymphedema". Basically it's swelling in the chest, underarms & upper back. It has made raising my arms above my head very difficult. That has been the hardest thing for me to deal with. You don't know how often you actually do raise your arms until you can't do it! I will be seeing my Oncologist on Fri. and will be asking her about how/what I can do to relieve this. I did find a good website called "http://www.stepup-speakout.org". I've learned that there are some things that can help, so that gives me some Hope!

When I went for my mammogram on May 27, they ordered a chest x-ray and could determine from that, that the cancer had invaded my chest wall. That was the reason that my surgery was scheduled for the day after I saw the surgeon. So I not only had the mastectomy, but also had some tumors removed from my chest. They had some problems diagnosing exactly what type of cancer it was, but it was finally diagnosed as Stage IIIE Adult Non-Hodgkin Lymphoma. I was started on chemo 3 weeks after surgery. After the 2nd round, it was determined that the chemo was not working, as my tumor-markers had tripled from the pre-chemo level. At this point, I am not receiving any type of treatment. And, while this is not good news, I am doing okay with it. I have continued to be monitored closely and should a Clinical Trial open, that is specifically for this type of cancer, I will be referred to that Trial. In the meantime, I do have Hospice available to me, should I need it. That is more for pain management, than anything else.

Listen...I am BELIEVING that I am Healed! I will continue to fight with everything I have. My Faith is strong. When I cannot walk through this, HE carries me. When I am down, HE lifts me up.

It is not an easy Journey. I have bad days and I have REALLY bad days. But, I also have GOOD days! I do find that my body is weak and I spend much of my time in bed. I think I've only been out about 4 times since my surgery (with the exception of doctor appt's). I just don't have the energy it takes to be out. And, I don't want to expose myself to any type of illness! I continue to struggle with eating and being able to shop for groceries. There is a woman in my apt. bldg. who will pick up nessecities like cat-food and the few things I can eat, so that is Wonderful! It's Amazing how HE always puts people in your life at the exact time you need them!

I still have had no visits or calls from my family, other than my Mom. That is agonizing on some days. There are times when I just want to be hugged or to hug someone. I really would like to see my great-nieces & nephews. They live near me, but none of them are old enough to visit on their on. But, I will likely see them later this month, as my Mom is coming to visit me. She is going to stay with me this time and help me do some organizing and a bit of "clutter control". I'm hoping this really does happen. She usually stays at my older sisters house, since she has a bigger house and it's mostly her children & grandchildren who are at the family gatherings. That absolutely makes sense to me, but it limits the time I get to spend with my Mother.

I want to be able to sit and talk to her. I want her to be at MY home. I want to be able to smell her when she leaves. Does that sound crazy? Don't you think everyone has their own "scent"? Well, MY Mom smells good! : ) She always has. Can you tell that I LOVE my "Little Mama"?

Over the past couple of weeks, I have been working on a Living Will. Deciding where my things will go should I lose this fight. I have made some tough decisions. And, shed a LOT of tears in doing this. But, I feel like it's my responsibility to take care of what I leave behind. I have LOTS of things in this little apartment and I need to find a new home for them.

That goes for my two cats, too. (YES! Lizzie is still with us!) She rallied AGAIN after some IV fluids & antibiotics! HAPPY! HAPPY! HAPPY! I have to give her fluids under her skin every other day and that has helped her. Neither of us like that little "procedure"! She is not well, not a 100%, but she eats and purrs and snuggles, so I am glad that I did not have to make that decision. Though that may still happen, I Pray everyday, that she will just pass away in her sleep. Be assured, I will never let her suffer! I watch her closely and take good care of her. This is where I need to put a in "sister-love" picture or two! They really DO love each other and I know that Flora will mourn for Lizzie, as much as I will.




Back to my belongings! I have to tell you that I have LOTS of "stuff"! I have several Collection. I have collected Angels and Dolls for many years. I have so much in my apartment, that I feel like it also clutters my mind. Late last Fall, I began to sense that God was telling me to "SIMPLIFY". And, I now FEEL like it is time to do that. I've KNOWN it, but now it feels okay to let go of these material objects. So I have come up with a plan and I need some help. But, I'm gonna share that in my next post. Keep watching for that!

I need to finish up this VERY long post and get some food into my body! Thanks for stopping by!

PEACE & LOVE!

ALREADY AUGUST!!

Where does the time go? It doesn't seem possible that it's almost Fall (my favorite time of the year). We broke a record here in Southern Mn. for the month of July. This was the first time in history (or as long as they've been keeping records) that the temp. did not get up to 90 degrees! But, it's now August and the Freeborn County Fair started yesterday, so of course it's near 90 now! I always feel so bad for the animals at the Fair. Stuck in those always too small pens. I cannot go see them. It really does make me sad. Actually I haven't been to the Fair in the past 3 years. Besides not liking the heat, it is way too hard to get around the Fairgrounds in my wheelchair. I may get brave this year and go to the Sunday Community Church Service. I went in 2005 and really enjoyed the feeling of our community Worshiping together. As much as I enjoyed it, I got sun-burned like crazy! I have to be careful about using sun screen whenever I go outside. My skin is very fair and I burn easily, plus the fact that I'm on several meds that cause me to burn.

It's strange, this weather pattern we've been in. Much cooler in general and there are already signs of Autumn. There's one tree near my apt. that is the first to start changing colors and the leaves have started to turn yellow. I watch that tree every summer as it changes and it is very early this year. I'm looking forward to the new season. That probably sounds strange to some, but Summer is my least favorite season of the year. I get a lot of slack from friends & family about that. They all love the hot weather! Now if I could just tan like them, I might like it better. NAH!

I hope all of you are enjoying the dwindling days of summer! Enjoy the rest of the time you have with your kids before they go back to school!

PEACE & LOVE!

ON GIVING AND RECEIVING

HAPPY BIRTHDAY to ME!!

Today I Celebrate my 52nd Birthday. No shame or embarrassment about age here! This Gal is just HAPPY to be here to celebrate my Life! And, I'm determined to see my 53rd come around! The highlight of my day was my "Birthday Call" from my little Mama. Every year she sings "Happy Birthday" to me and to my three siblings. It was always my very FAVORITE thing about my birthday! I cannot complain, afterall she did some really HARD work bringing me into this world! From what I hear, it was not easy!

I've been Praying about writing this post. I've had some fears. And, I know that some people will be angry at what I have to say, but it is necessary for me to say some things. This IS my Blog. I GET to put my thoughts here, so I will not apologize for any of the things I write here. Please, know that and be aware of the fact that it comes from my heart.

WHY DO YOU GIVE? That is what I need to ask folks. WHY? I am speaking of Giving as in Donating. Whether it be in Tithing to your Church or Sponsoring a Child who needs help with school/necessities. Or it could be doing Volunteer Work. I think we ALL need to ask ourselves that question.

In the past few months, I have been on the receiving end of giving. Now like everyone I know, it is FUN to receive. I feel so Blessed by the many kind and caring people who have reached out to me during a very difficult time. I want to talk specifically about the Charity, Spirit Jump. I have shared about how this organization has brought much Joy into my life. I have received many, many cards and gifts from people who volunteer to "Jump" the Spirits of those who are suffering from cancer and other life-threatening diseases. At times it has been overwhelming. To think that ALL of these people I've never met would just decide to Brighten my day.

When I had my recent surgery, I was BOMBARDED with Balloons and Flowers and Plants and Candy and Stuffed Animals. Some of those things were sent by members of Spirit Jump, but the majority came from people who heard my story on TWITTER. It was Amazing and SO touching that these complete strangers rallied together in a very dark time in my life! It was absolutely one of the most amazing things that has ever happened in my life!

But, with all of the Joy that it brought into my life, it also brought pain. Unbeknownst to me, someone decided that I needed to have meals brought to me after my discharge from the hospital. And, while that plan was kind (and needed), it did not work out. A TWEET went out on TWITTER, asking for donations to help pay for these meals and once again, people responded.

The plan was to have a warm lunch and dinner delivered to me, M-F, for 3-4 weeks. Several people on Twitter worked on the planning and setting up of these meals. Although several groups worked on the plans, it was decided that Spirit Jump would handle the contacts and the donated funds. The noon meal was to be delivered through a program similar to "Meals on Wheels". And, the evening meal was to be provided through a local grocery store that has a large deli. That store agreed to provide and to deliver the evening meals. After four evenings, I was informed that the evening meal would be provided by a "Religious Organization" that provides meals for the needy. Apparently, that group was planning to prepare and deliver the meal to me, but after learning that I have Celiac Disease, they decided that they did not know enough about the diet, so instead of cooking it themselves, they would pay for and deliver meals from the grocery deli.

While all of this was seemed to be an ideal way to provide me with much needed nourishment, there were some minor problems. The noon meal was done for only one week and I made the decision to stop that service. The food was simply not appropriate for my Celiac Disease. And, on one of those five days, the meal was not even delivered. As this was being paid for by the money collected on Twitter, it did not seem to be the right thing to do. So I contacted the program and cancelled it. I also contacted Spirit Jump, as they were responsible for the payment.

After one week of the evening meals being delivered, my diet changed due to being sick from the new Chemotherapy. I was put on a liquid diet and the only thing I was able to tolerate was a homemade Smoothie. I spoke to the Chaplain who was responsible for the evening meals and asked to have just some bananas and frozen strawberries. For whatever reasons, she felt like this was not what they agreed to provide and seemed reluctant to do this. Her response was actually very unkind and I just did not have the energy to keep having "discussions" with her. At the end of the first week, I cancelled that service as well.

By this time, I was 8 days out of the hospital and decided to take care of buying my own food. I was not able, nor was I wanting to eat anyway, so that was the end of the meal plans. I never even thought about where/when/who/how my meals would work. I just went back to my life as it was before being hospitalized.

And, then I did a post on my Blog. This Blog. It was an update on my follow-up appt. after surgery. In that post I mentioned that my Albumin level was zero and that I needed to really UP my protein intake. I mentioned that protein is expensive. That was it. Well, some of my Twitter Friends who read my Blog, became concerned about my health. THEY talked amongst themselves and THAT is when problems arose. I received some phone calls and messages/emails asking why I wasn't getting the meals that were set up for me. These were folks who had donated money to pay for the meals and they were just concerned and asking where their money went.

They also contacted Spirit Jump with their concerns and questions. In my mind, that was appropriate. When I make a donation, I like and need to know where/how my money was used. It was that simple. But, those questions led to a lot of anger and rage. I received several very angry emails from Spirit Jump, demanding that I call them immediately. I did call them and I was just blasted with yelling/screaming. I didn't understand what was happening. I could not say anything, could not be heard, would not be heard, so I just hung up the phone.

What I eventually learned, was that on that first night that the Tweet went out regarding the meals/donations, a different Charity tried to help with setting this up. That Charity actually made the phone call to set up the noon meal. And, somehow I NEVER knew about that. I later discovered that there is a lot of strife between these two Charities that had been going on for quite awhile, long before I came along. And, the founder of this other Charity was one of the folks who asked questions about the donations.

I was asked by several people as to what was paid for with the donations. I told them that as far as I knew, nothing had been paid. That Spirit Jump had tried to get a bill and had not received it yet, but all that was owed was around $19.00 dollars.

All I said was that they had not paid it yet. That as far as I knew, nothing had been paid yet. Now I did not read all of the emails exchanged between these two charities, so I don't know exactly what was said. But, one person made it sound like I had told them that Spirit Jump had never done anything for me. And, that is what Spirit Jump heard.

At this point, Spirit Jump and some of their "people" are very angry at me. I, in turn, feel angry at the person who told them that I said "Spirit Jump had never done anything for me". That never came from me. It is simply not true. I would NEVER say that. As I've said before, Spirit Jumpers have pulled me through some of the hardest days in my life. I Love what Spirit Jump stands for ~ why and what it was started for. That Charity has SO many people who WANT to give. Who do it because they Care.

I don't know what will happen. I am sad that it happened. I can only Pray for everyone who is a part of Spirit Jump, that they read this and hear my Words, my Heart. I can only Pray. I Appreciate each and every person who made it a purposeful effort to encourage me and lift my spirits. THEY DID!

I guess I've said what I needed to say. I will do another update and fill you in on what's happening with my health.
Until then...Peace! Jo