I am guessing that many of you are starting to feel this way….life in the desert….searching for the relief of an oasis. Amid the scare and I admit for some of you, panic, of the COVID-19 pandemic, we have been forced into isolation. Many of this most recent generation were well on their way to this prior to any social distancing. Faces buried in the screens of their phones…talking to the person via text or game dialogue when if they just looked up, could see the person across the room from them. Do you think they are coping better than the older generations who are not tech savvy? Perhaps. But we all feel the loss of choices being taken away from us. Choices to go shopping for a new Easter dress in a store….to visit a friend….to travel to see new places…to go out to eat with your family…to go to Church and worship with your brothers and sisters in Christ. These choices have been taken away from us and it can make you feel isolated and down; like wandering in the desert.

Many people have commented to me that they admire my faith and upbeat attitude despite the circumstances I have been dealt. I have to be completely honest with you. There have been some really dark times for me. For the first two months or so I can look back and tell you that I was indeed in a deep depression. Everyday I woke up and hoped it had all been a bad dream. But I could feel my bald head and the lump on my chest where my port is and know that it was not. I am a praying person and a woman of faith. Even now, I participate as fully as I can to the live streaming daily and Sunday Masses from my home parish, St. Gerald, in Ralston, Nebraska. It is Lent and I have a couple of extra devotions I do each day on top of the ones I do daily all year round. I talk to God (usually in my head) throughout the day…thanking Him for gentle mercies and asking for blessings for others. I was blessed to be raised by strong Christian parents and have been blessed along my life to meet people who have been instrumental in my faith journey. No matter how strong your faith is, you sometimes find yourself in a desert.

I have been pretty lucky that throughout my cancer journey, I have rarely missed Mass on Sundays. In fact, I only missed one Sunday, the one I was in the hospital after surgery. I feel at peace in my church…and feel I can talk to God better. It’s like the telephone reception to God is clearer there. (I know that sounds ridiculous, but bear with me….these are my feelings.) However, it was also a painful place to be. Every hymn we sang I would question in my mind if that was a good one for my funeral. Would this hymn have the words that would comfort my family and friends? Would this be the hymn that sounded like I was speaking to them myself? I love to sing…and would sing through the tears and choked up feeling I would have at Mass. But then I started having those pesky lung complications from chemo and I didn’t have the breath capacity to sing….just barely whispering the words of the hymns…having to sit down when everyone else was standing because I was just too tired. Getting way too overheated and wanting to take off my felt hat that I wore to church but didn’t want to scare the small children around me with my bald head. Going to Mass was generally my only outing for the week other than dr appts and occasionally driving Lily and her friends to and from school. So I have been in this desert that you all are finding yourselves in for months. Now Mass in person has been taken away. My dear friends at St. Gerald are kept at a long distance and I miss them. They would always come up to me and tell me that they were praying for me and give me a hug. A hug….something that is so simple yet I miss so very much. I think about these poor people who are in isolation with COVID-19 who are not getting visitors or human touch during their dying days….seniors in senior centers….my heart aches for them. They are in the desert with us and we can’t forget them.

Today’s Gospel lesson was a hard one to listen to. The story of Jesus and Lazarus. Lazarus was a good friend to Jesus, as were his two sisters, Mary and Martha. Word was sent that Lazarus was sick. Jesus waited two days then travelled to their home. Lazarus had died. Jesus wept. He wept for his friend and he wept for his grieving family members and friends. He wept even though he knew he would miraculously raise Lazarus from the dead. I worry about my family and friends when I won’t be here on earth anymore. I try hard not to go down that path because it ends in heart-wrenching tears. Will my husband be okay? Will he re-marry and be happy? Will my kids go on to live happy and productive lives? The selfish part of me wonders if they will share their memories of me with their kids so they might know who their grandma was? Will my kids ever think of me once I am gone? Who will take care of my parents? Will they know how much it hurts me to have them bury a child – even an adult one? It is stuff like that that sends me from simply being in the desert to being in the desert in a haboob. (yes, it is a real word….it is one of those massive sand storms) Luckily for me, through the swirling sand, there is a hand that will grab ahold of my arm and let me know I am not lost. Sometimes it is a phone call from a friend…a letter in the mail…a text from my family…but all have the hand of God in them, letting me know that I am not alone. So many people have touched me in a way that have saved me from that haboob (sorry that is such a weird word…but it is the one that I have to use). I try and tell them right away that they have had the Holy Spirit work through them to save me from the darkness. Like a text from a friend across the globe that came in at 4 a.m……when I was awake and lost in that haboob. They touched my soul, and let me know I wasn’t alone…and the sand storm ceased. I am so lucky that I am not in that dark place constantly anymore. I have dark moments….not dark days and weeks now. I am so very thankful to all of you that share your lives with me. Cancer has taken over my life. I appreciate you all who contact me and talk to me about your lives…about the good and bad. Thinking about anything else keeps me in the light. I have read that I have to stay out of the sunlight with this new chemo drug. I love the sunlight…I sometimes feel that everything is being taken away from me right now. I love the sunlight, I love Holy Communions, I love hugs, I love seeing and talking with friends, I loved being prayed over, I loved working out, I loved working,….you can see how it can snowball and become a pity party. So today I pray for those you are wallowing in isolation in that pity party. Reach out in a responsible way to your family, friends, and neighbors. Let them know they are loved and remembered during this crazy time. Hug who you can and let them feel the love you have for them. Everyday my day planner asks what my main goal is for the day. Mine is always the same: Be a blessing to others. Remember that the end of the Gospel lesson today was a story of hope: Lazarus was not forgotten by Jesus, but was raised from the dead.

I had two appointments today at Bergan Mercy. I met with my oncology hematologist. He whole-heartedly agreed with the Sarcoma Specialist at the Mayo Clinic. He put the order in for the drugs we discussed. His nurse will submit the request for coverage to our insurance company on Monday. Hopefully, we can get started at the end of next week. I also met with my pulmonologist. He was very happy with my new chest CT. He said it was a difference between night and day. He also told me how very close I was to have being admitted to the hospital in February when I first saw him. He was really debating about admitting me for IV steroids. I was really fortunate that the pill form worked well for me. He recommended that I avoid as much as I can the two chemo agents that I took for those three months. No problem! Lots of other options to chose from ! As much as I really love this doctor, I sure hope I don’t ever have to see him again.

I was really looking forward to watching the Mulan movie that was due to be released today. I actually am not a big movie person, so to say I was looking forward to seeing it says a lot. Sigh. I am ordered by my oncologist to be a hermit. So at home I stay….only trips to the hospital for me. We just had parts of the interior of our house painted, so there is some rearranging to do still. Otherwise, it is just working with Lily on her classwork and some scrapbooking. I have also been pinching my nose, holding my breath, and blowing out, trying to make my hair grow faster. Doesn’t seem to work as well as it did with the playdough hair barber kit that Lily had when she was little. Ah well. Patience. I know. If God is trying to teach me patience, He is really working hard on teaching me that lesson! Have a great weekend everyone!

Well, after a whirlwind trip of 10 hours of driving in the upper Midwest, we are safe back home in Omaha. We got home and decided to stretch our legs and go for a family walk before Tim headed back home to Lincoln. It was really great that he was able to come up here and stay with his sister and Tallinn while we were gone for about 30 hours. Listening to podcasts while we were driving there and back really helped make the trip pass more quickly. Also, a quick shout out to my best friend, Judi, who lives in Rochester. She picked us up this morning and drove us right to the front door of the building we needed to be at for my appointment. I only got to spend about 7 minutes with her, but I will always take what I can get! She is one of those friends who always makes me laugh, even through the tough times.

We entered the Mayo Clinic and immediately had to answer a barrage of questions. We then got our temperatures taken. We moved on to a second station and had to give my Mayo clinic patient number and let them know when and where our appointment was. We were given a big blue sticker with the word “Thursday” printed in big white capital letters. We had to wear the sticker in plain sight the whole time we were there.

The Sarcoma Cancer Care Team is housed on the 10th floor of the Gonda building. It is a newer building and was beautiful. There were a lot of Murano blown glass sculptures in the main areas and then beautiful quilts back in the patient appointment room areas. The waiting areas are massively large with several wings waiting in the same area. There were signs on some seats for people not to sit on to keep physical distance from one another. Most, if not all, of the patients were cancer patients, so there wasn’t a lot of need to say much. We are pretty good at practicing social distancing when we need to before the COVID 19 virus became an issue. I got called back pretty quickly and when I was measured at being 5 ft 3.25 inches. That’s the tallest I have ever been in stocking feet! Okay, truth be told, I was wearing a fuzzy hat. It was cold today up in Rochester! Anyhow, the person checking me in asked a few questions and then gave me a sheet with the names and pictures of all the team members on my Sarcoma Cancer Care Team and contact information. Wonderful idea! A fellow (which is a doctor studying to be a specialist in a medical field) came in and so did a RN. He asked me to start telling me the story of my cancer journey. He had already known most of what I was going to say….but wanted to hear it all in my own words. He verified some of what I said with questions of his own, and then allowed me to ask him the questions I had brought with me. Then he went over some of the scans with us and then some of the options that the team had talked about ahead of time for treatment.

When the Sarcoma Specialist came in (he’s the head guy there and super nice), Rich and I were very impressed. He told us that he had talked to the gyn surgeon at the Mayo Clinic and they had talked about my case ahead of time. Surgery is not an option right now, agreeing with my local surgeon in Omaha. So they cancelled my later appointment for today. That did allow us to leave earlier to get back home, which was nice. So this doctor has a different way of approaching my case than the doctors in Omaha. This Sarcoma Specialist sees a LOT of people with LMS like me. To the doctors in Omaha, I am an enigma. Leiomyosarcoma is 1% of all cancers. The fellow has seen more sarcoma patients than my doctors in Omaha. So they have a lot of experience. My doctors in Omaha want to be very aggressive and try to shrink the tumors in my pelvis so they can operate. The trouble is, it has to be shrunken down really small to get ALL of it out. LMS is an evil beast. It just keeps coming back. It isn’t a matter of if it will come back but when and where. My cancer has already spread to other areas of my body. I am stage IV. The toothpaste is out of the tube and it isn’t going to go back in. There will be no cure. There will be living with it as best I can. The doctor said that there is no reason to put me through the really horrible chemo treatments (which is what my chemo doctor in Omaha wanted to do even before my lungs were cleared) when we can use some that will give me better quality of life. So for all you medical folks out there, we are going for palliative care versus curative. Currently, I have no symptoms from any of my spots of LMS in my body, including the one in my pelvis the size of a cantaloupe. If I hadn’t really been in tuned to my body, I would likely still be living my life not knowing about it. My back does hurt if I have been walking a lot from the spot on my spine. However, if we can keep everything like it is or even shrink it, then I can lead a good life. The studies have shown that the really icky combo drugs did not prolong the life more than the single, less icky chemo drugs. So we are aiming for quality of life. Surgery is not longer the top goal. Letting me live my life is. No, we are not giving up. I know this will most likely kill me at some point. There is no cure. However, I am going to take the Fellow’s advice and do whatever makes me happy. The plan is to start on Doxil. It is a chemo drug with a lipid attached to it. It is evidently bright red and has very few side effects. The biggest one being that it may turn my hands and feet red. At least I live in Nebraska where the greeting to all natives is “Go Big Red!” I should fit right in! It does not cause hair loss. In fact, my hair has started growing back in a bit over the last 6 weeks. It is maybe 1/2 cm long (yes, I look like a chia pet). My hair is dark though….so I don’t know if it will be blonde again or not. It is nice to know that I will maybe have my own hair for Joe and Michelle’s wedding! Six months of growth….I might be able to pull it off! The doxil is an IV drug and will be administered over a couple of hours once a month. The Mayo doctor also suggested another drug (not a chemo drug) that is given IV once every three months. It is a drug that will strengthen and seal off my bones so the lesion in my L2 vertebra doesn’t spread or weaken the bone and will protect my other bones from getting other cancers spots growing on them. So these two drugs are the suggested plan of treatment here in Omaha. I have two appointments tomorrow (Friday) at Bergan Mercy. I will see my chemo dr to review my plan and set a start date (most likely next week) and then the pulmonologist to get my lungs checked out. I had a chest CT on Tuesday, and the Mayo dr’s reviewed it and said I should be good to go. So more tomorrow on dates and such.

I want to thank you all for your words of encouragement and support. I am overwhelmed with the kindness being sent my way. I have so many wonderful people in my life. I am so very blessed! I am sorry if you sent me a message asking how today went and I didn’t get back to you. I really wanted to talk to my kids first and my parents. To avoid having to type out everything or talk about it over the phone multiple times (because I tend to get a little emotional talking about it) I would rather just type it here and let you all read it at your leisure. I hope you understand.

Well, we are just about ready to leave for Minnesota. No snow in the forecast or tornados…you never know with the upper Midwest. Tim is here to stay with Lily and Tallinn. My dear friend Emily is bring food for the kids tonight. Just when I was starting to get a little anxious, I went out to get my mail. I had five cards in there today….all with words of encouragement about this trip. It was just what I needed to push the tears back and let God take over. I probably won’t be posting on her until I get back (which I am hoping is tomorrow night. I hope to have a lot to say and a plan to implement!

Today I had to go into Bergan Mercy Hospital to have a repeat Chest CT done. I told you I had issues with a chemo pneumonitis….well, I have a follow-up appointment with my pulmonologist on Friday and he wants to see if the steroids cleared everything up. Normally your lungs should look relatively clear. Mine looked like a cloudy spring day with streaks of white cirrus clouds everywhere.

I was greeted at the door by masked medical workers and their questionnaires. They were very nice considering they were sitting right next to the door and were in scrubs. They had to be freezing. I was then offered hand sanitizer and asked if I knew where I was headed and then sent on my merry way. Almost all of the people that work at desks at the hospital were wearing masks. My radiology technician was not. There was a waiting room and we all spread out to avoid being too close to one another.

I am not a big fan of these scans. I have had enough of them already to last me a lifetime. So I have to admit after reading my Lenten devotions this morning, I prayed about this. I have a port in my chest to avoid having a bunch of needle sticks. However, the techs in the radiology department are not qualified to access these ports; they have to call one of the oncology nurses to come do it. So it is really easier for them to just start a peripheral IV (in your hand or arm). CHI has recently gone to new IV needles/catheters. They are so much more painful. I am usually pretty good with IV’s being started on me. I was a nurse in the Air Force, and am pretty at ease about those kinds of things. However, the last three scans I have had (in the last couple of weeks), I have really had some bad experiences. It feels like those catheters aren’t letting the needle do its job and then they feel rough as they are advanced. Anyhow, with that in mind, I was dreading today. All of my former CT scans were with contrast, so I had to have an IV. I prayed for grace this morning at my appointment. God listened! I didn’t need an IV! I was in and out in about 10 minutes and was thrilled about it. Because I leave for the Mayo Clinic tomorrow, the nurses there asked for me to get a disc of my CT scan today to hand carry up there. I asked about it and the techs had it for me in 5-10 minutes. My biggest complaint of today was that there was so much road construction around the hospital that I had to go a very round about way home. Goodness, if that is what bothered me today, I am indeed blessed. I do have to say that I was more nervous going and sitting in the hospital than I am going to the grocery store. Call me crazy, but that is how I feel.

Since I try not to let cancer rule my life, I am going to chat about something different. How about homeschooling a high school girl! Good gravy, that may just kill me before the cancer does! We are on week #2 of what Westside School District calls “Extended Learning”. Whew. Last week was ROUGH. Here’s my take on this. People in college classes have the choice of taking online classes. They normally only take one or two at a time. You really have to be pretty organized and diligent about doing your required work. When I was living in Japan, I worked on my Master’s degree and it was all online. You only took one class at a time because that way you kept everything straight. My newly 15 year old daughter (who was not given a choice) is now doing 9 online classes. She has a hefty schedule but two of her classes were more hands on: Art and Intro to Fashion (sewing). Whelp….kinda hard to do these classes hands on now. So they are having to kind of rewrite these classes…with videos to watch and worksheets and papers. Last week in a 24 hour period, I had 10-15 emails from her teachers. Some had assignments, some had project deadlines, some had expectations for study time and facetime with the teachers over Zoom. If you know me at all, you know I am a very organized person. Color-coding everything is my passion. I was totally overwhelmed. Lily was TOTALLY overwhelmed as she received the same emails I did plus duplicates from Google Classroom. Rich called me from work and asked me to take him off the school email list because he couldn’t wade through all the school messages to get to his work messages. The next day….the same thing. It was awful. Lily and I sat down and read through every email and wrote down assignments and due dates. Monday rolls around and we didn’t hear from any of the teachers until after 3 p.m. Today, we received emails from her teachers and it sounds like most of them will only be emailing once a week with the whole week’s assignments instead of everyday. Today the planner I ordered for her came in the mail. We sat down together and set it up. It is color-coded and has everything on there for each day that she can see easily. I am hoping this will help tremendously, especially since I will be gone for a day and a half and Tim will be the one cracking the homework whip. She hasn’t heard from her Engineering teacher at all yet…and she said he never emailed the class during the school year, so I hope that this is somehow going to workout as well. I have to admit there has been yelling….tears…on both sides. The one nice thing is that I let Lily sleep in until 0930 and she starts her work around 10. She is NOT a morning person. This is helping a bit. Anyhow, off to make sure she is actually reading her book for Global Intolerance and not painting her nails…..sigh. My love, empathy, and prayers go out to the rest of you homeschooling your kiddos!

Rich and I leave Wednesday afternoon to make the 5 hour drive to Rochester, MN to go to the Mayo Clinic. I will be seeing a sarcoma specialist for an hour starting at 0830. I will then be following up with a gyn surgeon at 1245. We will then be driving back home to Omaha after that. I have two appointments on Friday, March 27th here at Bergan Mercy. A follow up with my pulmonologist and then a meeting with my chemo doctor about what was discussed at the Mayo Clinic and schedule treatment to start again hopefully the next week.

The Mayo clinic did call Rich and ask if they could postpone our appointment for three months, but Rich assured them it was vital we kept our appointment. They thought I was still undergoing chemo treatment. Once they figured out the situation, they kept the appointment and made the second appointment with the surgeon as well. We hope to come home with some answers and a plan going forward.

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

Well, it is hard to say when this all began….this cancer journey.  In the summer of 2015, I had a hysterectomy because I had a large benign (so they told me) tumor in my uterus.  While I was in surgery, the ob/gyn thought my appendix looked funny, so she removed it.  The following week I was told that the large fibroid in my uterus was benign but the marble sized tumor in my appendix was not.  They labelled it a “carcinoid” which meant it had cancer-like properties.  I was referred off-base to a surgeon at Nebraska Medicine.  He said we needed to make sure it hadn’t spread any further, so less than 6 weeks later, he went in and removed half of my colon and the lymph nodes attached to it. I don’t really recommend having 2 major abdominal surgeries less than 6 weeks apart.  I felt like I had been hit by a mack truck after the second one.  Everything came back clean and after several follow up appointments, I was given a clean bill of health and discharged from his care.

Fast forward to October 11, 2019.  I am an avid kickboxer. I had been attending classes 5 days a week at 0530 for an hour.  One of those days that week, I was laying on my stomach (no, not trying not to die, but in between burpees) and I felt a mass in my stomach laying on the hard mat.  It felt similar to when I had the fibroid in my uterus.  But now without a uterus, I was pretty concerned.  Rich was out of town, so when he returned I told him and he made be call the doctor on the base right away.  He didn’t have any appointments for the next week or so, so his nurse told me that with my history, I should go to the nearest Emergency Room.  I ended up at Bergan Mercy here in Omaha.  I was actually seen by a PA that I used to work out with at D1.  After many scans and tests, I was told they had found several large masses in my pelvis, a spot on my lung and a spot on my bone in my hip. We were obviously devasted.  They wanted to admit me right away to run tests, but as it was Friday afternoon, one of the doctors who came in to see me decided there was nothing they could really do over the weekend and I might as well be at home.  I was sent home with an appointmet to following Tuesday with a new gynecological surgeon who specialized in difficult surgeries.  The boys and Michelle came home that weekend.  I was a mess.  I had no idea how bad it really was.  I saw the surgeon and he was really wonderful and meticulous.  I started getting all sorts of scans done so he could go in and get out these tumors.  Surgery was set for Nov 1st.  When I woke up, Rich told me the surgeon wasn’t able to get the larger tumor because it was embedded in my pelvis, stuck to other organs and highly vascularized.  He told me if he would have tried to take it out, the chances were pretty high I would have bled out on the table…or received massive transfusions and spent 2 months in the ICU recovering….if I was able. So he took out a tumor the size of a softball, my right ovary, and my omentum.  I was on the post partum ward for my recovery, so everyone had a sign on their door with a stork on it that had a bundle that said, “It’s a Girl!” or “It’s a Boy!”  I felt left out so my very artistic daughter made a replica for me that said, “It’s a Tumor!”.  Everyone thought it was funny except for a resident without a sense of humor who came in the last morning to discharge me.  I could hear her outside my room hissing to the nurses within earshot, “Who put this up here? This is inappropriate!” Ah well, you have to keep your sense of humor.

On Veteran’s Day, Nov 11th, I was told that the pathology results came back with me having leiomyosarcoma.  It is a rare and aggressive cancer.  Like 10 people in a million are diagnosed with it rare.  I started immediately looking it up online. Bad idea.  I was devastated.  Rich came home and found me bawling at the computer, convinced I only had about 2-3 years to live.  Then I noticed he was kind of upset as well….he had come home to tell me that our dog of nearly 12 years had had a massive heart attack at the vet’s office and had died. I have to say, that was the darkest day for me.  My border collie, Kona, who I had kissed that morning before she left for the vet’s office, was my steady companion in life.  To know she was no longer there gutted me.  Within 3 -4 days, I knew I couldn’t stay at home and fight this fight without another being with me.  I didn’t realize how much I talked to Kona until it was deathly silent at my house.  We went to the Nebraska Humane Society late that week and left with an Australian Cattle Dog, a Red Heeler, which we renamed Tallinn.  (all of our dogs have had names of places we have visited and loved).  Tallinn is a bundle of energy and a pure bred ACD.  He is smart and about 1 1/2 years old now.  That is their best guestimate.  He loves to play with balls and chew bones and to snuggle.  I sat down on the floor at the NHS and he sat on my lap and tucked his head into my neck.  Then he did the same thing to Lily.  He has been a fabulous therapy dog.  It is so sad to not have Kona around anymore, but we would have never found this little guy if she were still around.  It’s a God thing. I am convinced.

Back to me….I got even more scans after I healed from the surgery.  I had a bone biopsy on my L2 vertebra, because there was a suspicious spot found on it.  Don’t recommend that procedure to anyone. I literally had PTSD afterwards because I was awake through the procedure. There was a reason they didn’t tell me about the procedure until I was already in the room.  Imagine being strapped down to a metal narrow table in a CT scanning room on your stomach, and having an 11 gauge needle hammered into your spine.  Yep. Never doing that again. Ever.  So we finally got all the test results in and had a big meeting with the surgeon, the chemo dr, and the radiologist.  I was told I had a 1.1 cm spot on my right lower lobe of my lung that they would assume is cancer (leiomyosarcoma likes to send mets to the lungs – it is very common to have several), the bone biopsy came back positive for LMS, and then there was that big tumor in my pelvis…. So I was categorized as being Stage IV uLMS. (the u standing for uterine – even though I don’t have a uterus). The spot on my hip that they mentioned in the ER has never been found again….so that is good.  I had been tattooed (just little black dots) on my hips and back for radiation treatments, which was what we first thought we would do) but they decided since I was stage IV and had it in other parts of my body, to start out with chemotherapy.  So in December, I started with Gem/Tax.  It was a 21 day cycle. Gem on day 1 (Tuesday for me ) and then Gem/Tax on day 8 (the next Tuesday).  I got a Neulasta injection on day 9 to stimulate my white blood cell count and then I would have a week off and come back on day 22 (which is actually day 1).  So I got a port surgically placed in my chest about a week after the bone biopsy and got to fighting this beast.

I managed 3 rounds of Gem/Tax.  It wasn’t awful, but it wasn’t any fun either.  I am lucky enough to work at home and was able to find a few hours a day that I felt good enough to sit at the computer and do what I needed to get done.  I quickly lost my sense of taste.  It is really weird eating a kosher dill pickle and only feeling the texture of it in your mouth and not tasting it.  Or eating salsa and knowing it must be hot because my lips were burning and my nose was running, but I couldn’t taste it.  I craved crunchy food at that time.  The texture difference was great.  Even water tasted weird and I had to drink a lot of water!  I am still trying to manage 2 1/2 to 3 liters a day.  I also developed peripheral neuropathy in my fingers and toes.  They were just numb and got cold really fast.  In the Nebraska winter, that was everytime I went outside.

I had two complications.  I started getting short of breath during the beginning of the second round of chemo.  It kept getting marked worse.  I mentioned it to the chemo doctor, who told me I was out of shape and needed to get out and walk more. He also had me get a pulse oximeter to measure the oxygen in my system on room air.  I could never get it higher than 94%. It got progressively worse as treatment went on.  I also started having fevers and chills.  The chills would last for an hour, then my fever would break with the help of Tylenol and ibuprofen.  Then I would sweat profusely as my fever would break.  It was so bad that I would have to get up in the middle of the night and change my pajamas because I was soaking wet.  Again, I mentioned this to my chemo doctor.  He seemed to think the chemo was putting me into perimenapause.  He told me I was having hot flashes.  So I got a thermometer and took my temperature 6-8 times a day.  I finally put my foot down and asked him to look at my labs (which are done every week).  My WBC count was consistently high.  I was being overdosed on the Neulasta shot….which is a time released shot.  It was kicking in right away the first 4 days (fever, chills, sweats, and horrible joint and bone pain).  Then I would have a reprieve for about 5 days then it would come back full force again.  After noting this for two rounds, I brought it up again.  This time he listened to me and we went to Granix shots every other day.  That was pretty miserable as it is not time released.  I had to go to the cancer center every other day to get these shots in my arms that left big bruises…and I don’t bruise easily.  The joint and bone pain was really really bad. But the fevers and chills went away.  The Granix was 1/2 the dosage of the Neulasta.  By the time it came time for the 5th granix shot, I was starting to have fevers and chills again.  I knew I didn’t need that last shot.  Sure enough, I went in and asked to see the doctor.  He did my labs and my WBC was very high.  He cancelled the shot. At the same time, I mentioned that my breathing was really really labored. I would get winded from walking 10 feet.  It was awful.  He ordered a CT of my chest to make sure that I didn’t have a pulmonary embolism.  I felt this was highly unlikely since I had been complaining of shortness of breath for over 6 weeks at the time. The scan came back and my lungs were a mess.  Pneumonitis….kind of like a chemo pneumonia.  He looked at me and said, “You weren’t imagining things.” I was livid.  Not being able to breathe is not something I take lightly. I was put in to see a pulmonologist that day. He was pretty close to putting me in the hospital.  If he had realized that the medical technician kept the pulse oximeter on my finger for 5 mintues to get a better reading, things might have been different.  I had been sitting for over 30 minutes and my O2 on room air was in the 80’s.  That is not good.  Everytime I tried to take a deeper breath, I would cough. I felt like I was only using about 20% of my lung capacity. My heart was racing because I couldn’t breathe.  I had been sitting there for 30 minutes and my pulse was high 120’s.  It was a vicious cycle….my heart was racing because I couldn’t breathe.  I couldn’t breathe and so my heart was racing.  I was put on high does steroids for  a month and taken off the Gem/Tax.

When I came back in to see my chemo doctor, I let him know that I was going to take this time to seek a 2nd opinion, specifically from a sarcoma specialist.  He recommended a friend of his at the Mayo Clinic in Rochester, MN.  I will be seeing him soon.  In the meanwhile, I can breathe again, my regimen of steroids is done.  I have been off chemo for 6 weeks so I am feeling better.  It was time for me to get re-scanned and I have.  I met with my surgeon and although the pelvic tumor has shrunk some, it has not shrunk enough for him to warrant doing surgery yet. On to the next thing!