Quick update

My 6th chemo treatment was scheduled for last Tuesday, June 9th. But, due to a low platelet count it was cancelled. Platelets are wonderful little cells that are produced in our bone marrow and have the job of clotting our blood. The normal range is 140,000 to 440,000. The goal for chemo is 100,000 or above. Two weeks ago at treatment #5 I was 87,000 and this week I was 66,000. So, time for a rest. One week off was suggested, but that throws some summer family reunion activities off, so I will take two weeks off and proceed with treatment #6 on June 23rd.

Initially I was disappointed. I was looking forward to celebrating the half way mark, but after thinking about it and how I am feeling, I know it is the right thing for me. My body needs a rest. This pushes the end of chemo to the middle of September.

I feel very blessed with continual guidance about the path I'm on. My heart remains full of peace about this process and gratitude for all my blessings. I am especially grateful for all the prayers, love, and support from so many wonderful people in my life. You are my earthly angels!

Expect the unexpected…and DON’T PANIC!!!!

One of the tests done to try to predict/monitor tumor growth is called a carcinoembryonic antigen (CEA). It’s far from a perfect predictor of cancer. There is a whole list of nonmalignant issues that can cause it to increase – many of them related to the GI system. Chemotherapy can also cause an increase. When an increase occurs in a patient with cancer the protocol is to go looking for possible new tumor activity. My CEA tests have always stayed within the normal range (1-3). But since starting chemo my CEA has been 3.4 a month ago and 6.5 last week. It’s worrisome for sure.

So a CT of my chest, abdomen, and pelvis were done yesterday and the results are in. There is no evidence of malignancy in my abdomen and pelvis. The large pelvic blood clot has resolved and the colon inflammation is healing nicely – still present but much better. There is a 3.1 cm x 1 cm “new mass” in my lower right lung. Remember – DON’T PANIC! The first thought from the radiologist that read the film and my oncologist was to suspect a new malignant mass. BUT, when I was so sick after my first treatment I also developed a pulmonary emboli and area of infarction in (you guessed it) my lower right lung. My oncologist called the radiologist and had him take another look at the film. After a closer look at the mass and surrounding blood vessels he feels it could “easily” be inflammation from the infarction. One other observation from me is that cancer usually does not cause pain and I do have pain in that area. Infarctions do cause pain.

So a situation that was to be a game changer is now considered a watch and monitor. I will have the CEA repeated in 1 month, another CT of my chest in 2 months, and my current chemotherapy will continue. This remains a worrisome situation and the possibility of a new tumor is real. However, so is the possibility that it is simply inflammation. In the meantime prayers, hope, and trying to live a healthy and happy life style continue.

Round 5 of chemo went well despite a 10% increase in my 5FU dose. The norm seems to be 5 days of yuck and then I slowly start to feel better. By one week past the onset of chemo I am feeling pretty good. I have to pace myself, but by then I’m getting better every day.

Last Sunday was Stake Conference and the theme was about hope - probably because so many people in our stake are having challenges - poor health, emotional, family problems. The scripture theme was from Proverbs 13:12 "Hope deferred maketh the heart sick: but when the desire cometh, it is a tree of life." It implies we need to have a desire for hope, which to me says we can choose to have hope or despair. Hope is a gift of the spirit and ultimately comes from the Lord. Despair, on the other hand, comes from a dark place and tries to pull us away from all things good and positive. Without question hope is "a tree of life." It produces happiness and optimism. It is an active expectation of good things to come. This theme really touched my heart...not because I have been to that place of despair, but rather because I have been blessing with so much hope. Not once have I felt despair. I don't know what the ultimate outcome of my journey will be. It doesn't really matter because I know for sure that either way all will be well. I am loved and cared for by earthly and heavenly beings. No one could ask for more! Hope...YES!!!

Blog time! Round 4 is…almost history and on the way up. Chemo is getting pretty predictable, which is a good thing – I don’t like surprises! I spiked a temp to 102.2 on day 3 which had me pretty worried. I was started on antibiotics quickly. The fever broke after about 8 hours and never returned. I’m so blessed with a caring medical team. They quickly return my calls, call me the next day to see how I am doing, and express genuine concern for me. I’m a blessed girl.

In the last two weeks I have enjoyed some great family time. Our annual Mother’s Day gathering was great. Our house was a florist shop for a week with a beautiful variety of floral arrangements. We had our monthly sisters’ dinner and evening of Pinochle with my two sisters and their husbands. The only down side to that evening is that the girls’ team fell 3 games behind the boys. We also celebrated our youngest granddaughter’s 1^st birthday. Daryn and Catie (well mostly Catie) gave her a wonderful flamingo themed party that was enjoyed by everyone. The flamingo piñata was a huge hit with the kids. My neighbor taught me how to crochet cute flowers for the knit hats Emily and I have made. They are adorable. I look a little like a 1920’s flapper with them on!

I was checking out the progress of hair growth on my head and was thrilled to find one random hair that had a curl to it! Dare I hope for curly hair? My hair does seem to be growing though it is pretty sparse. It will eventually come in, but then that means I’ll have to fuss with it. I think things are best as they are for now.

So, what have I learned with this round of chemo? I have had many priesthood blessings since this journey began. Except for some reason (forgetfulness, maybe cockiness that “I can do this myself,” or whatever) I didn’t get one before round 3. Round 3 was hard, so I was sure to ask Devon and Erron to give me a blessing prior to round 4. There is no doubt that round 4, though not a walk in the park, has been easier than round 3, and I seem to be rebounding quicker than round 3. So yes, “I can do this myself,” but it is so much easier when the powers of heaven are petitioned. It's a lesson I'll not forget.

Again…thank you to my sweetheart for his tender, constant care. And thank you to all of you for your prayers, love, and support. Without you this journey would be much harder.

Round 3 came and went – thankfully about the same as round 2. Usually the first day of chemo I feel really good because of the Zofran and steroid they give me. This time it seemed that the side effects hit harder and faster the first day, but after that it leveled out to similar round 2 experiences. I think some of the side effects are lingering longer – cold sensitivity in my fingers, pain in my jaw when I take my first bite of anything, and yucky metallic taste in my mouth. I did “up chuck” twice, but in the world of chemo that’s not bad at all.  Each day from now on I should get stronger and feel better, and then we start all over again. It’s good to know what to expect.

I was so worried. Chemo was Tuesday, Wednesday, and Thursday. But Friday, oh Friday! We had 2 wonderful events scheduled for Friday, neither of which I wanted to miss but didn’t know how I would have the strength to attend. A grandson of Devon’s sister was getting married in the Oquirrh Temple at 11:00 am followed by a family luncheon. And, the biggest and most anticipated event was our granddaughter’s graduation from UVU. Ashley-Kate (David’s daughter) is graduating with both her high school diploma and her Associate Degree! This is a big deal, and attending her graduation was beyond important to me. Shame on me for doubting. Somehow (actually I know how) I not only made it to everything, but also enjoyed every minute. 

Devon has been pushing me to ask for a handicap placard, and I have been resisting. I just tell him to drop me at the door and then wait for him to park and come help me get to where I need to be. Well, I guess he was tired of the drill and at my last oncologist appointment HE asked for the placard. So, yep…I now have a temporary handicap parking placard. Not sure who likes it the most!

Marianne and Tony came for the weekend. Daryn and Catie came over for a visit on Sunday. We had a nice visit with Lori and her little ones on Friday, and wonderful visits with extended family here for the wedding. I’ve had phone calls and texts from many other family members and friends. Each one lifts my spirits and reminds me of how blessed I am. It has been a wonderful and exhausting weekend!

A good friend dropped by for a visit on Saturday and asked me an interesting question – “What have you learned from all this?” The answer is - God loves me, sustains me, and always provides exactly what I need when I need it. He is mindful of me every minute of every day. I am so grateful for my friend’s question. I’ve thought about it a lot these last 24 hours and realize how important it is to look for the blessings and tender mercies from God. Sometimes they are subtle and easy to miss. And if we miss them, then we miss the opportunity to express gratitude and bear testimony of God and His goodness. Not a day goes by that we are not blessed by God’s tender mercies. So my question to you and myself, “What have you learned today?”

Chemo round 2 is history, and it's a good story to tell! A full dose of Oxaliplatin and a half dose of Fluorouracil was infused over three days - April 14, 15, & 16. The side effects were minimal - mild nausea, mouth tenderness (but no sores), and big time fatigue. By the evening of the 19th I felt my strength beginning to return and it has steadily improved with each day. On Monday (20th) I weeded a small flower bed, and yesterday and today I rode my bicycle 5 miles each day. A visit with my oncologist today revealed that my labs were all pretty normal. We were both very happy. Next Tuesday will be round 3 with this same dose. After round 4 we will re-evaluate if I should stay at this dose or make a change. I am in such good hands medically!

I'm feeling like "I can do this" thanks in large part to the many prayers and well wishes from all of you. I marvel at the diversity of those who love me enough to pray for me - many of my faith, many of other faiths, and some not affiliated with any specific faith. You all bless my life in ways you cannot imagine. I am so grateful!!! I am in such good hands spiritually!

On a light note - it seems that a few (maybe 12 or so) hairs on my head have decided to grow. So if you want a good chuckle just close your eyes and picture that!

Hugs and love to you!!!

Good news abounds! My appetite has returned, I have gained 1 1/2 pounds, I'm feeling stronger every day, and my blood counts are almost normal. My lab tests confirm that a rare mutation in a gene is responsible for my inability to metabolize one of my chemo drugs thus causing my extreme reaction to the drug. So the new plan is to decrease the amount administered by half and to omit another drug given to enhance the effects of the chemo drug.  We also plan closer monitoring between treatments to see what effect the new regime will have on me. Truthfully, I'm a little nervous about another round but my oncologist is confidant things will go much better this time, and I trust him. He feels so bad that I had such a severe reaction, and will keep a close eye on me.

I am rocking the baldheaded thing with adorable knit hats and cute scarves given to me by some wonderful family and friends. Having no hair is really a time and energy saver. I wouldn't choose it but hey, hair grows and for now it's so easy. Emily is almost finished with the adorable hat she is knitting me and I'm about finished with a basic one I started. Chelsey went bicycle riding with me yesterday - a nice easy 2 mile ride around our neighborhood. It felt so good to be on my bike again. Emily and Devon rode 16 miles. I'm jealous but will be back with them again as soon as possible.

Through all of this I have felt so blessed! I have shed tears; not because of the trial, but because of the love and concern expressed and felt from all of you, and the support I have felt from heavenly beings. I know I have not been through this alone. My Savior's atonement has been at work in my behalf. I bore what I could, but He took the rest just as promised. I understand now when friends have said the trial of cancer and chemo has been hard, but so worth the journey because of the many blessings received in so many lives.

So Tuesday is round 2. With all your love, prayers and support I know I am ready.

Life has been challenging here, to say the least, but things are on the upswing. My first round of chemo was difficult - every side effect was manifest to the extreme (and I wasn't supposed to have extreme side effects with this chemo). My doctor thinks I am missing an enzyme that metabolizes one of the chemo drugs. So without that enzyme the drug is more powerful in my body- almost like getting a mega dose. The result was 4 days in the hospital to treat a large blood clot in my pelvis, a severe colon infection, and a white blood cell count that dropped to 0. Besides that, my hair came out in clumps, the skin on my hands blistered and peeled, nausea, diarrhea, mouth sores, and no appetite. 

So forget all that! Here is the important part. I had such amazing care from the Huntsman Cancer Institute. It truly is the Taj Mahal of hospitals. The staff was amazing: doctors, nurses, pharmacists, dietitians, and even housekeeping. All so kind, gentle, and caring. I actually felt sad to be leaving. But beyond that was the loving care of my Heavenly Father and His Son. There were times I was sure my room was full of angels tending to me and supporting me. There were sweet miracles some might call coincidences, but I call tender mercies. Devon and our children have been beyond loving and caring. It was a scary experience for us all. I think it has been hardest on Devon. He tries so hard to meet my every need and often wishes there was more he could do. I have decided nurturing is definitely not a natural characteristic for men. But he has done such an amazing job! I am truly blessed!!!!

Moving on from here, I'm in recovery mode and feeling better every day. I am extremely fatigued, but finally have an appetite and enjoy eating again - oh the simple pleasures. I've bought some cute scarves to cover my bald head. I don't miss my hair at all! In fact it sure makes things easier. Maybe when I feel better and want to go out I’ll feel differently. Emily is knitting me a darling hat with cute little beads and I'm going to start a more basic hat. I don't feel like doing much but I do enjoy knitting. I see my doctor on Friday and if all is well I probably will proceed with an adjusted chemo dose the following Tuesday. 

So the message I want to leave is that God loves us and is aware of our every need. He never leaves us to struggle on our own. It is us who leave Him. I have felt the multitude of prayers on my behalf. They bring me strength, courage, and comfort. I thank you for every thought and prayer you have uttered in my behalf. The journey continues and all will be well.