Update

[Kathy57]

Hello Sjoggie friends!

It's been a while since I have really posted here.  Sorry to report that I've had one of the darkest winters of my life.  I didn't do so bad - I only had one bad flare, but it was bad.  My asthma really kicked up during the flare and I went on prednisone taper.

No, it was a long winter because my husband went through 14 weeks of some pretty heavy chemo and 38 days of radiation.  It's hard watching someone you love suffer, and lose all their hair.  It's hard to watch them become weak and feeble. 

The good news is that I was able to take darn good care of him - ended up in the ER once and multiple doctor appointments for him.  I have to admit that I was filled with terrible worry and a dark and constant depression.  The weather didn't help but when it was all done, we went to Florida for a week and just relaxed and enjoyed the weather.

We live in Illinois but were lucky enough to be referred to MD Anderson in Texas for my husband's cancer treatment.  I feel they have given us hope in a hopeless situation.  We have been traveling back and forth for doctor appointments but we were able to have the chemo and radiation at home but under our doctor's guidance.  I'm so thankful for the excellent treatment and care that he has received.

My husband's hair has come back and he feels almost 90% normal.  I think it takes time to get this out of your system.  The really good news is that his doctor feels that he is in remission❤️👌☺️😊.  Considering he has Grade four cancer with all biopsies at Gleason scale ten - this is everything we could have hoped for!❤️👌 

This doesn't mean that he is cured and it doesn't mean it can't come back but it is the best news that we could hope for.  We go back in August to do repeat lab work and MRI.  Keep your fingers crossed.

So I have much to be grateful for but it has been a dark and long winter. 

I'm still working as needed at the hospital and it varies how much I work from week to week.  They are very understanding if I need to take time off. 

I'd be lying if I said that I wasn't sick of feeling sick and tired most days.  Sometimes I get tired of taking all my meds and supplements and spending so much time just trying to take care of me and to keep this Sjogren's in check.  Don't you just get tired of all the uncomfortable symptoms?  The fatigue and constant dryness.

I have so much to be grateful for and there is finally light at the end of this tunnel, but I wish I could just feel "normal" again and it has been so long that I'm not sure That I can truly remember what "normal" felt like. just  think how much time we spend trying to stay ahead of these symptoms?!  I know that you all know what I mean.

I'm grateful to be able to do what I do but sometimes I get so tired!  Just wish I had more energy but then I have "enough" energy to get done what I absolutely need to.  I know many of us don't have that.

Thank you all for your prayers and thoughts for my husband.  Much appreciated😊

Kathy

[Joe S.]

Wow, have you been challenged. You may wish to ask his doctors about BX and BY virus. there are tones that kill cancer related to these tones. TED Talks has videos of frequency killing cancer.

[SjoGirl]

Oh Kathy I am so sorry. I will soon have some sense of what you have been through. My only living sibling had colon cancer last fall, thought she was cancer free and just learned last week that there is cancer in her lung and some lymph nodes. She is losing a pound a week and has chosen not to do chemo (she is quite older than I, 80).

I definitely understand what you mean about taking pills and feeling "normal." Almost a year ago now I began taking Nexium daily and then started Evoxac because I could not swallow. I have to have my Evoxac compounded because I can't take 30 mg at one time due to horrible sweating so every month or so I traipse to the pharmacy to get that med.

I take pills four times a day and have a big pill sorter. I turned to my husband one day and ask, "when did I become this woman?" That said, the meds have helped me gain some of my strength and life back. I've been able to exercise which is helping further with pain and am working halftime and consulting. I can do more than I was able to for years, but not nearly what I used to.

It's difficult for people to understand what it's like to have a chronic illness, it chips away at you every day if you let it. What I'm learning is that I can't let it, life is too short to let this disease rob me of everything, if it takes me down, I'm going down with a smile on my face from enjoying my life.

I am very pleased that your husband is on the other side of his ordeal and hope you two can celebrate.

[Kathy57]

SjoGirl,

I'm so sorry about your sister.  It's a tough decision to make about taking chemo or refusing it.   I don't think I could judge anyone's decision to take it or not.  I hope for the best for you and your family.

You are so right about enjoying your life to the best of your ability!  I am reminding myself to be grateful for every day.  I am so thankful that my husband is in remission.  It was more than we could hope for.

Thanks for your kindness.

Kathy

[irish]

Im glad that you made it through the winter. You had quite the load to carry and it sounds like you made it. Of course, you suffered and had fatigue that almost killed you off some days but you still made it. Im sure it was hard on your hubby watching you carry the load but that is what marriage is about. Some days one of us has to take charge. I am also sorry about your sister. It takes a brave soul to make the decision that she did. Sometimes people live much longer that one would expect without treatment. I hope you two will be able to spend some quality time together.

I am also glad to hear that your hubby is doing so well. It truly is a miracle that he did so well and got through all the treatments as well as he did. I hope yoyo folks have a great summer. Irish

[angeldancer]

Hi Kathy,

I am so happy you made it through your very rough winter.  I like your husband battled a very nasty cancer.  I like sjogirl sister has just took my 6 month check and they have found some stuff that don't look so good.  I don't know if I can do chemo again.  It was a very rough time and now my mind is spinning about this new stuff.  Hold your head up and stay positive and look at each day as precious as it is.  I talked to another doctor and he said I got a tough deal having this autoimmune problem.  He said until my immune system works for me, I can battle cancer and other things forever.  Hmm..maybe if my focus is helping others when I am feeling good then I can think less of the probability of no cure.  Living with a chronic illness takes a lot to not fall into the depths of depression.  I have spent time just reading and staying hopeful and now i find myself writing again.  Well, I have to give hope and love where I can.

May you be of good strength and be able to help your husband and love ones.  May God give you as many reprieves as possible from this body that keeps rebelling.

Peace and blessings,
Angel dancer

[Carolina]

Thank you for posting, Kathy.

We are all only minutes away from any horrific life challenge.  Only a natural human state of denial (bad things only happen to OTHER people,  I'm a GOOD person and bad things only happen to bad people, I do everything RIGHT, so I'm safe, etc) keeps us from realizing how 'fragile' life and health really are.

When these life challenges do arise, very often we do rise to them.  This is a also a fairly natural human state. 

Thank goodness you have the health and the inner strength to step in for your husband.

You are indeed one of the "Sjogren's Angels".

Regards, Elaine

[Kathy57]

Sjoggie friends,

Thanks to everyone for their support, advice and kind replies.  I truly value the support that I get from everyone here and the sharing of our "stories".   Love the suggestions and wisdom!  Life is made easier because of this☺️.

Kathy

[Deb 27]

Kathy, I hope you can breathe a little sigh of relief, stop and enjoy your husband's remission. You made it through an incredibly difficult time. Many thoughts and prayers for you and your husband.

[quietdynamics]

Continuing thoughts and prayers to you and your husband and many here, self included ...

Life with so many twists and turns, frustrations, times of being overwhelmed, fearful, then times of peace, joy, small gifts of compassion and care.

Kathy you are doing so many healthy admirable life skills.. continuing with work (the important large portion of what you yourself built professionally), taking a vacation with your husband to "just be". Admirable.

When my stepfather had a major heart attach, my mother pressured him to sell his business, which he had very successfully built scratch after coming through WWII. Sold their home and more toward the shore. And secluded. Would not come up to grandchildren's games.. too far.. Pop Pops' heart, etc. Sad all they missed.
My stepsister had chemo for cancer and her hair grew back in curly. It looked wonderful. Sadly, the cancer returned. She was a nurse and opted to not do chemo again. Instead, she took her only daughter and grandchild to the islands for a vacation. They had a wonderful time, the existence now of wonderful memory for her daughter.

My own mother unexpectedly was Dx'd with cancer and there was no positive medical course.. so I took her home and Hospice came in. It was wonderful and peaceful. It was surely a lot less stressful for me, than jockeying back and forth to facilities. Once trying desperately to catch up with a specialist at hospital, on way in my heart started pounding and body shaking (in midst of Dx) and I felt as though this might be a heart attach. I stopped and thought to myself "Well, at least I am at the right place." Dr. Rx'd Klonopin.
There were some Flares.. and these are understandable as we physically and emotionally drain ourselves.

I do not think it was really that long after comming home from carrying for Mom, that DH had a heart attach on a golf course.
At hospital I said "You know why this happened? "No" he answered. "Because you left this morning without kissing me goodbye" I got my kiss then and there..lol AND ever since. He knew my point was always acknowledge the people you love because 'life has twists and turns". His 1st wife parked her car for work and died of a  brain aneurysm.

I am hoping for strength for your husband so that he can seize the moments according to his abilities, and seize a bit more the next..  Kiss.

[SunshineDaydream]

Kathy, I'm glad to hear you and your husband are back in the light after such long and extreme darkness. I'm impressed that you did so well with your own health during that time. That takes great stress management and self maintenance skills to pull off in light of so much stress. Kudos to you!

I hope you and your husband enjoy the summer and get more great news in August.

[Nomad]

Thank you for posting. (Hugs)