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My Story

Updates 20132014201520162017

before illnessIn April 2009, I started running. I had been on the track team in high school, but hadn't kept it up after graduation. I had also smoked — about a pack a week — for about eighteen years. I had heard that if you exercised you could repair any damage that you had done to your lungs. One of my my biggest fears was that i would end up with emphysema when I was old and I wanted to repair any damage that I might have already done. My best friend had died of esophageal cancer and I didn't want to suffer the same fate.

In January 2012, I begin to notice that I was having trouble breathing, not in my chest but in my head. I would run a 5k (3.2 miles) and my face would stay red/purple for about an hour afterwards. I went to my primary care physician who prescribed inhalers and a chest X-ray. After trying several inhalers and having no success, my doctor then prescribed medicine for chronic obstructive pulmonary disease (COPD). This medicine cost $200. After taking a couple of doses I realized it was not working either. I begin to question whether my doctor really knew what he was doing so I changed my primary care physician. (The photo on the right was taken about six months before I was diagnosed.)

My new doctor reviewed my prior chest X-ray and prescribed more inhalers, this time for exercise-induced asthma. I tried a couple of these inhalers but they did not provide any relief. I had gotten what appeared to be a sinus infection when my primary doctor was out of town so I went to a walk-in medical clinic. This clinic diagnosed me with a severe sinus infection and prescribed me a full month's worth of antibiotics. After about two weeks I called the clinic back and said that the medicine didn't appear to be working. The clinic then called in a stronger antibiotic which I began to take but within a few days it appeared that my kidneys were starting to shut down.

I then went to see an allergist to see if maybe the problem was allergies. I had never had any allergies as a child, but heard you could get them as an adult. I had some testing done and found out that I was allergic to several things. The allergist prescribed me some nasal inhalers but still with no success. The allergist then suggested I try an allergist/ENT. On my very first visit this doctor tried to "scope" my nose but could not even get the scope up the left side of my nose because he said I had an obstruction that was blocking the entire left nasal passage. He then scoped my right nasal passage which appeared to be clear. I had a follow-up appointment at which time the obstruction had started to move over to the right side as well.

Surgery was immediately scheduled for January 31, 2013. The doctor had advised that the surgery to remove the obstruction would take 30 to 45 minutes. On the day of the surgery it actually took almost two hours! A few days later I stopped by the hospital to get a copy of my blood work. About a year prior I had been anemic (low B-12 and Iron) and wanted to see if I still was. I signed the HIPPA (Health Insurance Portability and Accountability Act) release to obtain a copy of my blood work but instead of receiving a single sheet of paper, the nurse handed me a manila envelope and said, "I think you want to see this."

I was a bit confused but I took the envelope and left the hospital. When I got into the car I opened the envelope and started reading. It was a copy of my surgical pathology report. On page 3 the final diagnosis stated “Biopsy, left nasal mass … malignant,” “Additional tissue from left nasal mass … malignant,” “Left inferior turbinate; malignant,” and “Left middle turbinate … benign.” Of course my reaction was "Oh sh*t, I've got cancer!"

I saw my ENT surgeon on February 13, 2013, and he confirmed what I already knew, I had cancer, but now it had a name — Invasive Sinonasal Undifferentiated Carcinoma. My doctor advised me not to go on the internet because much of the information out there is very discouraging. Of course I went on the internet anyway and started to search for more information and found out that indeed most of what you will find is not very positive.

I did however find a great forum called Cancer Compass (http://www.cancercompass.com), which offers a place for people with my type of cancer as well as other types of cancer to share their stories and offer some support and hope and comfort.

I had some further testing done and learned that the cancer had moved to my lymph nodes.

March 25 — I started treatment at Moffitt Cancer Center in Tampa, Florida, which consists of radiation five days a week for seven weeks and three rounds of three days of chemotherapy. I had a few setbacks and had a low white cell count of 1.42 so my second round of chemotherapy was reduced by 17 percent. I am on antibiotics to improve my white cell count.

hair_cutMy hair started falling out about three weeks into my treatment. I cut about 12 inches off at the end of March, so it wouldn't be so traumatic when it started to fall out. I donated it to Locks of Love (http://www.locksoflove.org) and hope they make a great wig for someone. (The photo shows my hair before and after the haircut.)

I will update my page as I continue my journey. I am very hopeful to be cured of this terrible disease and hope to help raise money to help find a cure as well as to help others who may not have the financial means or insurance coverage to pay for their treatment.

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2013 Update

I am now starting week No. 7 of my treatment. I have my last chemotherapy this week and my last radiation is next Tuesday, May 14.

May 4 — On the evening of I had to call the hospital because my throat was thick and my tongue was white. It turns out I have Oral Thrush, which I got from the radiation. Apparently this is pretty common in people getting treatment for head and neck cancers. The next day my nose was sore and filled with scabs and the roof of my mouth was raw and tender and my throat was very sore. I still have no taste buds and my left ear is blocked. My ENT says when I finish my treatment he can put a tube in my ear (like they do in children) and drain the fluid so I can hear again. Even with all this I am still pretty happy — I thought I would be a lot worse off then I am. In the beginning of my treatment the doctors talked about maintaining my weight, because if I couldn't they would have to give me a feeding tube. Even though water tastes horrible and food doesn't have a taste and is hard to swallow I have continued to eat as much as I can to avoid having to go through that too.

May 8 — I had my last chemotherapy appointment, again at the 17 percent reduced rate. I was told that if a treatment was reduced it could not be readjusted to the original 100 percent. I am happy to say that I did not ever experience any severe adverse effects from the chemotherapy. I just suffered from the usual “chemo brain” and constipation. I never experienced any nausea.

May 14 — I finished my radiation. I was originally scheduled to finish on May 10, but when I cut my hair it changed the way my mask was positioning and it took two days to redo the mask and simulation. These were added onto the end of my treatment. I was originally told that the three weeks after I finished my radiation would be a "living hell." The day after I finished I began to see why — I had blood and green in my nose, radiation burns in my nose, mouth, neck, blisters on my face, back and mouth, and pain in my left ear, mouth, and throat. My ear is still blocked and my hearing is still reduced. It took me four days to come up with the right medication combination to almost completely eliminate my pain. Fortunately by the following Thursday — May 23 — I was off my pain medications! I know I was more fortunate than most and am hoping this is a sign that the treatment has worked … crossing my fingers! I had a follow-up with my doctors on June 24 and they seemed pleased with my progress. My PET scan is scheduled for August 8 and I am very eager to find out the results!

August 8 — I had my first PET scan done. The doctors originally wanted to do a full body scan because I had broken my foot just before first being diagnosed, but when the script came it was only for thigh to neck and neck and head. I was upset about this and asked the technician to verify with the doctor that this was actually what he wanted to do. It was. The technician assured me however, that if when they did the scan, if they noted any “hotspots” they would “flip me around” and do a scan from thigh to toe.

The entire time I was doing the scans for my thigh to neck and head a neck I kept thinking to myself: “Don't flip me!” When the second scan was completed — the technician told me I was free to go. I let out a big sigh of relief! I was cancer free! I called my parents and let them know the good news. My father had called my uncle, who is a college professor in Syracuse, New York, to let him know the news and to ask him to let my grandfather, who had been recently diagnosed with an undifferentiated carcinoma as well, know the good news. Unfortunately my uncle was busy grading papers and was planning to let my grandfather know the next morning, but when he went to tell him he found that my grandfather had passed that morning — not knowing that I had been cured.

September 9 — I have had a follow-up with the head of the head and neck clinic, who was pleased with my progress but advised I am “not out of the woods” yet. My next follow-up is scheduled for January 2014, at which time another PET scan will be ordered. One of my side effects after I finished radiation was liquid in my left ear which made hearing difficult and had the effect of getting water in your ear after swimming. The doctors had hoped it would clear on its own but earlier this week my ENT used a needle with a syringe and punctured my ear and drained the liquid. It felt like it does when your ears pop on an airplane. It appeared that he removed about 3 cm of a tannish liquid. I can hear now and do not seem to be having any problems with the hole healing. Another side effect which I have been experiencing is a numbness in my fingers and toes with an occasional jolt through my body. The doctors have advised me to take Vitamin B1 for this. I am hoping it will help. I will continue to update as my treatment continues. I am hoping that my blog will help ease the fear and answer some questions for others who have been diagnosed with this terrible disease.

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2014 Update

January 9 — I had another checkup with my radiologist on and scheduled another PET scan and brain MRI for the end of April so we can monitor the progress of my brain tumors. We also scheduled an appointment with a neurologist for May 5 along with a follow-up with the head a neck clinic.

January 21 — Since my last update I have had a second myringotomy, which cleared my left ear for about a month and a half, and had an ear tube put in which should keep my ear clear of fluid build up for about a year or two. My ENT says he may have to do it again at some point, but it was a painless procedure that takes only a few minutes to do so I am OK with that. I also scheduled a six-month checkup with my dermatologist and also my eye doctor to monitor the cataracts that have now started due to the radiation. I also have dental check ups every three months, meet with my ENT every six months, and get B-12 injections every month. I am currently (and have been since I finished radiation) off all prescription medications, except prescription vitamin D-3. I also take two iron 65 mg, B-1, vitamin C, and biotin supplements.

March 19 — I had my PET scan and brain MRI. On March 20 I met with radiology and found out I am still clear on my PET. There were some irregularities; I followed up with my ENT, primary doctor, and gynecologist and have been fully cleared.

moffitt_race

I have been back to running 5Ks — although my times are much slower than they used to be. I participatged in the ninth annual Miles for Moffitt race on May 10 (shown above). I am also now doing more cycling, kayaking, and workouts at the gym. I have recently completed my first hundred-mile bike ride and shortly will begin training (again) for my first marathon.

May 5 — I saw the neurologist for the results of my brain tumors that I had been diagnosed with when they found the cancer. At that time, the brain tumors were not a priority. I had one on my left temple and one attached to the lining of my brain called meningioma. As of today's visit the results of my MRI showed that the brain tumor on my left temple has disappeared. I'm not sure how but I have to believe that the radiation and chemo somehow caused it to disappear. I was told that the meningioma is the size of a small marble and hasn't changed in size since it was first discovered. It is in the back of my brain and if it grows it should only affect my hearing in my left ear. I have another MRI scheduled in a year to continue monitoring the tumor. If you have any questions or comments, please feel free to email me directly at karing40@gmail.com.

July 3, 2014 I found a hair on the floor yesterday and was thrilled. It was the first hair that I have seen that had been long enough to see since I had finished treatment. I was equally excited when I encountered my first knot while brushing my hair.

July 16 — I went to my ENT for another follow-up. He was still seeing swelling and a spot that he said he would feel better about checking on so he is scheduling me for another biopsy on August 11.

August 14— My biopsy went well. My ENT said all looked good He was still seeing some swelling but the biopsy came back negative. My next PET scan has been scheduled for November 4.

November 7 — As I sit here today waiting to be called in for my PET scan I scroll through Facebook and learn the devastating news that two members of our SNUC family have lost their battle. One was a loving husband and the other was a brave 14 year old girl. On November 10, I received my results that my scan is clear and I am feeling very blessed!

November 20 — I went for my tri-month dental check up. Unfortunately due to the fact that I am on medical disability because of my cancer and brain tumor I had been unable to make my three month appointment and went six months between checkups. What was supposed to be a forty-five-minute appointment took and hour and forty minutes. I was told I had five cavities and needed to have my bridge removed to fill one of them :(

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2015 Update

January 11 — I finally got to run the Disney Marathon in Lake Buena Vista, Florida, that I had been training for and had been unable to do due to my broken foot and cancer diagnosis in 2013. Unfortunately I had a sinus infection and a bronchial infection but I did complete this run with my best girlfriends Jen and Holly. This summer I plan to bike the MS150 that supports multiple schlerosis research on May 2–3. I also plan to do another marathon in the future.

March 9 — I had surgery to remove my gallbladder which had a 2.7 cm stone.

marathon

Jen, Karin, and Holly before the race, left. Karin and Holly crossing the finish line, top center. Prerace dinner, bottom center. Karin and Holly with well-earned medals, right.

May 9 (my birthday) — I participated in Miles for Moffitt. My team and I were able to raise $967 towards cancer research!

moffitt_2015

Cheering me on at the 2016 Miles for Moffitt were my mother, Linda, and boyfriend, Joe

June 14 — We held our very first fundraiser, Crankin' Out Cancer, a bicycling event that had a great turnout and helped raise more than $3,500.

August — I met with my radiation oncologist at Moffitt for my usual checkup. During my visit I had inquired as to when they would be scheduling my next PET scan due to the fact that it had been a year since my last scan. The doctor informed me that they would no longer be doing any further scans.  When I asked why not, I was informed that if the cancer came back it would be in multiple areas and there would be nothing more they could do for me. Needless to say, that visit did not go over well with me. I was furious.

October — I went back to Moffitt to meet with the head of the head and neck clinic and expressed my dissatisfaction with the information I was given in August. She did not feel the need to schedule any further PET scans but did agree to schedule me for annual CT of the Thorax with contrast in addition to the annual MRI that I get to monitor my brain tumor. Even though it had been over a year since my last PET the CT still was not scheduled until March 2016.

December — I called Moffitt to see about moving up my CT scan because of a pesky cough that I have been having on and off since last December. They finally agreed and scheduled it for December 22. I knew something was wrong when I saw that my results were pending online until December 24. When I was finally able to view them they revealed a hiatal hernia, my left thyroid in still deteriorating and a .3 cm spot in my left lung and a .6 cm spot in my liver. When I called Moffitt, because they hadn’t called me, they said they would schedule me for a follow-up scan in four months. When I expressed my concern about the length of time before the follow-up because SNUC is so aggressive they said something about protocol for radiology and they needed to wait that long because if they did it sooner it might not show change. I admit that I didn't go to medical school but I do know that it only takes SNUC one year to go from zero to end stage so four more months on something that is already showing sounds like a whoops, maybe we should have done a follow up scan on this extremely aggressive cancer sooner, but what do I know? I am not a doctor, just one of the few survivors that actually had SNUC.

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2016 Update

January — I went to see my ENT regarding the thyroid issue. By the way, this is the extremely talented surgeon who actually detected my five tumors —four cancerous and one benign, but actually performed the surgery and removed every one he found during the surgery. He could have taken the time to take a sample and have it biopsied first but decided to be proactive and remove them all when he was there. I discussed my August and October visits to Moffitt with him and he agreed that four months is way too long and that just doing the MRI and CT thorax with contrast still leaves my neck unscanned. This is a problem because when I first started with Moffitt, SNUC had already invaded my first lymph node in my neck. As I was sitting in his office he emailed over an order to Moffitt to schedule a PET scan. I left on the January 8 to go to Costa Rica on a mother/daughter trip and as of that date no scan had been scheduled. I returned home on the 16th and persisted for a follow-up. I have a PET scheduled for February 5. I will update more as I receive results.

February 5 — PET scan results showed a bad lymph node in my right side neck. Follow up CT of the neck and thorax is scheduled for April 28.

April 28 — Cancer is now located in the original left sinus cavity and has also grown into a large cluster in my right side neck. They are scheduling me for surgery to remove the Cancer from my sinus cavity which is located near my carotid artery and right side neck dissection to remove all the lymph nodes in my right side neck. I have been advised that they may also need to remove my jugular but are hoping to avoid doing that.

weddingKarin and Joe

joeatride

May 25 — Tonight I was married in a private ceremony on the Gulf of Mexico to the kindest man I have ever known.

May 29 — Surgery went well, it was a rough night last night and they are keeping me again tonight but I should be able to go home Sunday. I haven't met with the doc yet to discuss events moving forward but I will update when I hear. Thank you for all your prayers and well wishes.

June 1 — I was told that the cluster in my right neck had been the size of an egg by the time they took it out. The tube was removed from my neck (rather painfully) and I was released to go home Sunday afternoon from the hospital. I will be seeing the doc in the next week or so.

June 8 — I had my post-op appointment at Moffitt yesterday and was told that the spot that came back in the original site in my left sinus is SNUC again and out of the 17 lymph nodes that were removed from my right side neck, two were cancerous. My surgeon is meeting with the tumor board next week, along with my radiologist and my previous oncologist to discuss my treatment plan and I will be meeting with them the week after that.

An update on my husband, he was flown via Bayflight to Bayfront St. Petersburg on Sunday because he suffered a stroke. He will be in the hospital for at least ten more days, so please keep him in your prayers.I apologize for not having any updates since June, a lot has happened since then. Back in May before I had my surgery I decided to get the BRCA testing to see if I was prone to any other types of cancer. I had received the results and thankfully I am not! I am only prone to this rare and aggressive type of cancer, lucky me LOL.

June 17 — My husband was released from the hospital. Thankfully he is recovering successfully and has no residual results. The final diagnosis was cerebral hemorrhage, reason unknown. The hospital had wanted to keep him until the following Monday, but he had insisted on being released early because he wanted to attend the seconnd annual Crankin'Out Cancer event on June 18, 2016, which was a great success. He was a tremendous help and putting it all together. I could not have done it without him.

July 8 — They began making my new simulation mask for radiation.

July 11 — I had a follow up PET scan. They needed to wait until I healed from the neck dissection before they could scan me to determine where exactly they needed to radiate. They ended up radiating both sides my neck and back near the original spot in my left sinus cavity this time.

July 18 — I had a port inserted. I did not have a port when I did the treatment back in 2013, and they had such trouble trying to access my veins I know it be easier if I got one this time.

July 25 — My first day of radiation

July 27 — My first day of chemo

August 5 — I had a feeding tube inserted asI was starting to have trouble eating by mouth and dropping weight. All in all I ended up losing twenty-eight pounds this time.

ringer

September 2 — My last day of radiation (left photo)

September 9 — My last day of chemo (right photo)

September 23 — During the day I noticed that my temperature kept fluctuating fairly high. I monitored it throughout the day and that evening I caled Moffitt and had to be transported for inpatient treatment for aspiration pneumonia.

September 28 — I was released from Moffitt.

September 30 — I began hydration infusion. I was able to get several treatments at home through an outpatient home care service. For about nine weeks during and after treatment I was barely able to walk snf could barely get out of bed. I could only take a bath because I did not have the energy to stand in the shower. I started having difficulty breathing through my nose, and it got to the point where both sides were blocked solid. This made it tremendously difficult to eat by mouth. I slepr at night with my mouth open causing my mouth and throat to become extremely dry and scaly. It turns out that due to the second radiation the left side had extensive scar tissue which was blocking the cavity and the right side was closing up.

November 1 — I had surgery to replace my left ear tube, put in a new right ear tube, and put in a right side nasal trumpet. They had to custom make one that would be large enough because they were not able to do any surgery on the right side due to tremendous scarring and the risk of cutting an artery. This tube needed to remain in place for ten days to guarantee that the area would remain open. Unfortunately I had a bad experience putting soup through my feeding tube and in turn throwing up and having it come up and out through my nasal tube. Not a pleasant experience and I will never ever do that again — LOL!

In December I saw a doctor regarding applying for medical marijuana. I had a girlfriend that I went to school with who had had breast cancer. She was cured of that, but then she was diagnosed with terminal liver cancer. She began using medical marijuana and within three months her tumors began shrinking and thee months later they were nealry gone. I figured it was worth a shot. I had nothing to lose at that point.

December 29 — I had my post-treatment PET scan. I wasn't supposed to receive the results until I consulted with my doctor on January 5, but the nurses were so excited because they had seen my results they could not resist telling me. Once again I was cancer free!

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2017 Update

After surgery for my neck dissection I started to notice a hardening underneath my jaw and it was progressively moving over further to the right side of my neck. So in January , I consulted for Lymphedema therapy. Which I will be getting three times a week for several weeks to try and drain the fluid down near my armpits. I also was able to have my feeding tube removed. I had had to prove that I was able to eat by mouth. It was very limited what I could eat, but day by day progressively gets better.

January 19 — I had my port removed, yay. It was an in-patient procedure where they did not have to knock me out; they simply injected around the area to numb it.

February 21 — I am eating more and more by mouth, but still cannot eat everything, including nuts, meats, chicken or fish, but I get my proteins from protein powder and other sources. I will be receiving lymphedema therapy for at least an additional three weeks.

I am sure I have forgotten a lot of information, as I did the first time, and it will come back to memory at some point. It is hard to keep track of it when it is actually occurring. I apologize for not being more detailed, and as always, if you have any questions, please feel free to email or call me.

— Karin Starkweather

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