Karin would like your support to help pay medical bills.
In 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.)
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 aka SNUC. 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.
My 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 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!
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.
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.
I have been back to running 5Ks although my times are much slower than they used to be. I participated 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 :(
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 sclerosis research on May 23. 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.
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!
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. Â 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 had not 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.
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.
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 5 Today my husband was out on a short bike ride and suffered a brain bleed. He was transported via ambulance to Spring Hill Regional. I will post an update when I have it.
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.
May 25th
June 5th
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 second 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 as I was starting to have trouble eating by mouth and dropping weight. All in all I ended up losing twenty-eight pounds this time.
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 called 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 and 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 slept 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 nearly 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!
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 Lymph edema 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 lymph edema therapy for at least an additional three weeks.
May 11 PET scan.
May 12 Met with Joyce Payne at Oak Hill Hospital regarding swallow therapy. I am have issues swallowing a many types of food due to extreme dry mouth and throat swelling.
May 13 Miles for Moffitt run.
May 1 Brain MRI to check the status of my Meningioma (unrelated to SNUC).
May 18 Blood labs and appointment with ENT.
May 20 -28 In Maui, Hawaii, for a belated Honeymoon due to last years neck dissection, Jo's stroke, and cancer re-occurrence treatment.
May 30 See endocrinologist keeping an eye on a spot in my neck and then to Moffitt for a check up.
May 31 Visits to dentist and cardiologist.
June 12 Going to a local chiropractic office to try their lymphatic massage so I don't have to keep driving all the way to Moffitt to get relief. Sometimes my neck gets so swollen that I cannot swallow, my sinuses get backed up, and I cannot breathe.
June 12 Start swallow therapy; I have to learn how to swallow properly so that I can eat a larger variety of foods without choking to death. I have extreme dry mouth and throat. I am trying pilocarpine to try to regenerate my salivary glands. The goal is to eventually be able to eat without needing water to get the food down. The therapist is teaching me to swallow with my head up and to cough twice every time I drink to prevent aspiration and getting pneumonia.
June 17 Crankin' Out Cancer fundraiser great turnout. Thanks to everyone we raised about $500 more than last year.
June 20 Mammogram and ultrasound I have to get both because every time I just get the mammogram it comes back questionable because I have dense tissue. Have swallow therapy again.
June 21, 27, 29 Swallow therapy.
June 30 Go to Moffitt to sign pre-op paperwork and meet with anesthesiologist.
July 3 Swallow therapy.
July 5 Surgery, but I can't remember for what.
July 6 Had to go to primary to get liquid Percocet prescription for the pain. Moffitt prescribed pills, but I could bit swallow them.
July 7 Found a wonderful gentleman through a recommendation of my swallow therapist who does home lymphatic massage.
July 11 Surgical followup at Moffitt. Having problems with acid reflux, enlarged glands and my nasal passage is extremely narrowed and causing extreme difficulty breathing. I feel like I am drowning every time I swallow.
July 25 Home lymphatic massage.
August 3 On my way to work at the YMCA and was struck at slow speed at a weird angle that lifted up the back of my truck. Turns out that all the chemo/radiation has caused me to lose 28% of my bone density and now I have multiple bulges, extrusions and herniations.
August 27 My annual eye exam. Now I have advanced astigmatism in both eyes.
April 24 For any of my cancer friends - In case I haven’t posted this before - I cannot express how important it is to get a bone density scan after you have finished treatment. I have lost approx 18% of my bone density since the first time I got the cancer in 2013. I am now on aggressive osteoporosis medication to try and prevent any further damage. I already have a visible hump showing on my back that cannot be reversed.
June 4 I just wanted to check in and let you all know I'm still doing well. I promise to fill in the blanks for this year or so very so0n.
July 3 I had a laminectomy with discecectomy due to back injuries I received during a car 2017 accident.
September 15 1st Annual SNUC Busters 5K and 10K Run.
February At a dental cleaning it was determined that it was time to address the issues with my top row back teeth on both sides. Due to extreme trismus (lockjaw) and xerostemia (dry mouth) he has decided that we need to do route canals on both teeth and then file them down to the gum line to avoid infection, etc. He does not want to pull the teeth due to the extremely high risk of necrosis. At the consult for the route canals it was further determined that I could need to be under sedation because of further issues including the dental dam and the large pockets that I have that connect my sinus cavity to my mouth. (If I eat or drink anything and then bend over, it will come out my nose. If I try and clean my upper teeth with a waterpick, the water goes up into my sinus cavity. The next step is to meet with the anesthesiologist to go over my extensive medical situation.
April 2 Today I had my double route canals and getting both back teeth filed down. I hoped to wake up with no pain!!!
April 24 Went to a new dermatologist because I am getting per-cancerous spots that need to get burned off. He suggested a chemo cream which gets rid of per-cancerous and cancerous spots without having to be burned! Woohoo! I cannot wait to start using it.
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 underwent a 12-hour operation at Moffitt Cancer Center on April 16 for oropharyngeal squamous cell carcinoma. This involved partial soft palate and left tonsil removal, left side neck dissection, and right side voicebox tumor biopsy. Reconstructive surgery included using skin from her left wrist and skin from her left thigh to rpair the , as well as insertion of a titanium plate to replace the hole in the soft palate.To reach the tumor site, the surgical team had to break her jaw.
The surgeon who removed the tumor was pleased with the outcome, saying he was able to remove the entire mass before turning her over to the reconstructive surgery team. Karin awoke the next morning (April 17) and was in good spirits.
She had tracheostomy and NG (feeding) tubes.
Karin was moved from the ICU to a regular room on Sunday (April 19) and will be discharged to outpatient care on Sunday *April 26). She will have extensive speech and swallow therapy.
April 20, 2020 Tried to get up early to get Xanax to beat the docs before they just came and checked everything started removing /replacing stuff. But they said they would come back in an hour to change trach and remove one drain ??. So much for getting the jump on them . In 2016 they ambushed me so I thought I would be ready for them. But they are wise to me lol.
April 23 Just so you all can get an idea of how I feel. The pain I can deal with. The absolute worst is my breathing. Take a day. Tie a snug scarf on your neck, pinch your nose shut completely and Eat, drink and sleep. Add in excess mucas so you feel like you are drowning and that is what I constantly feel like. It’s pure torture. Usually i do sinus rinses and drink water but here I cannot. I’ve been suffering like that for over 7 days. Add in throwing up a few times and extra thick and sticky nasal tube feedings and now your living in my world. I haven’t slept in a week- literally. Didn’t know you could go that long - apparently you can - I have. The struggle is real!!!
They just took off dressings/drain tubes on arm/leg. Super gross looking ??. Two tubes left. Nose and neck. :(
Apparently there is a new level in Hell. I’m so freaking tortured right now. How much can a body take? Apparently an overwhelming amount!!!
April 24 I’ve been miserable, crying, Having meltdowns not understanding why after 7 days it wasn’t getting any better- why the pain was the least of my worries- but Last night I finally slept - woke in a pool of sweat confused around 1 am. Tech came in and all I could say was I’m so confused. Got my sheets changed, wiped down, new gown and ready to go back to sleep. I literally haven’t slept in a week! I could only “eat” once yesterday. I’ve been crying to nurses and docs because i thought for sure after one week I would have crossed the “ hump” and it hadn’t happened. I kept questing when it would happen, they extended my stay I was so defeated and then bam it happened- thank god! I pray it’s all uphill from here. I love you!!! Xoxo
April 30, 2020 It’s amazing to be able to actually see how my body is recovering. When they did my first dressing change on my arm at the hospital - I could actually see all my bones and veins and arteries in my arm. They had taken the thinist graft from my leg and put it on my wrist and I can see how much it has regenerated in heath and thickness in just a very short period of time. My skin is still going to have a few levels drop because it won’t fully adjust back to its original height but it has plumped up so nicely so quickly!
March 10, 2020 Today is Karen day at Moffit- My nurse was Karen, the cashier at the cafeteria was Karen lol. Girls passed me in the hallway talking about Karen LOL. Only bad part about the visit was the PET scan fluid infiltrated my arm but it seems OK. Dr. checked it out he didn’t seem worried.
May 6, 2020 Visit went well, healing is on schedule. Only one of the lymph nodes removed from my neck had cancer. The doc doesn’t feel that we will need any follow-up chemo or immunotherapy at this point. We will know more at the 3-month scan. Whoohoo!! Also got changed from nectar thick to include water and pudding thick too.
October 22, 2020 Now that I’ve had a chance to tell my dad I can update everyone here - my latest CT SCAN did not go as well as I hoped and I will be having a more detailed PET scan tomorrow but the results so far are that the latest cancer metastasized to my right voice box and 3 nodes in my lungs - one of which is necrotic (dying tissue). We had done testing earlier this year in the event this happened so I will most likely be doing Keytruda but I’m not sure what else. I will keep you informed as I know more. Xoxo
November 14
My dad passed away after a series of complications due to un-diagnosed high blood pressure which began on August 4, 2020. Additional updates coming soon.
Due to complications from un-diagnosed high blood pressure, my dad Albert Warren Starkweather, Jr. passed away on November 14, 2020.
Albert “Al” Starkweather, Jr., 81, died on November 14 in Tampa Bay, Florida, after an illness of several months. Mr. Starkweather was born in Watertown, New York. He was the son of the late Albert Starkweather, Sr., and the late Elizabeth Parker Starkweather of Brownville, NY. He was educated at Alexandria Bay (NY) High School and attended Saint Lawrence University and the University of Wisconsin before earning a B.A. in English and psychology from the State University of New York at Potsdam. He also did graduate work in communication and photography at Syracuse (NY) University, and in business at the University of Connecticut. Mr. Starkweather began his journalism career at the Watertown (NY) Daily Times. He later worked at The Hartford (CT) Courant and as an executive editor for Thomson Newspapers, where he was responsible for the award-winning restructuring and redesign of several of their newspapers. A skilled photographer, Mr. Starkweather often contributed pictures as well as articles to the newspapers for which he worked. Mr. Starkweather became a project editor with CRC Press, where he worked on technical publications such as the Handbook of Chemistry and Physics. After his retirement, Mr. Starkweather started his own business, Design on Demand, a print and online communications company specializing in web, print, and graphics design, publishing, advertising, photography, editing, and proofreading. His clients included Dow Corning, General Electric Company, Houghton Mifflin, the New York City Transit Authority, and St. Regis Paper Company, among many others. Music and philately were two of Mr. Starkweather’s many interests. As a musician, Mr. Starkweather played the soprano and alto saxophones. During his time at the University of Wisconsin, he played in the UW summer band under the noted Director of Bands, Raymond Dvorak. His lifelong passion for stamps led Mr. Starkweather to belong to the American Airmail Society and to serve as editor of the American Philatelic Society’s The Philatelic Communicator, the American Ceremony Program Society’s journal, The Ceremonial, and the Federation of New York Philatelic Societies’ The Insider. Mr. Starkweather is survived by his former wife, Mrs. Linda Souliere, by his two daughters, Lisa Starkweather and Karin Santamaria, and by a brother, John Starkweather. A son, Jeffrey, predeceased Mr. Starkweather. A memorial service will be held later. Mr. Starkweather was Vice-President of the SNUC Foundation, Inc, as well as its Webpage Designer and Editor, which supports the fight against head and neck cancer. In lieu of flowers, donations may be made on his behalf to the SNUC Foundation, Inc., 14485 Tamarind Loop, Brooksville, FL. 34609.
January 19 Semi-annual dermatologist appointment. All is well :)
January 21 Infusion day Free again - except they sent me home with neulasta this time. It’s supposed to help my white cells fight harder so ??.
January 22 Neulasta injection
January 26 Today i'm having some problems with laryngitis. Off to my semi-annual dental cleaning. Due to all the radiation I have to go every 3 months for cleanings because I'm more susceptible to plaque build up and cavities and have issues with gum rescession. My dentist is also going to make me a new mouth guard to sleep in to keep me from grinding and help with my jaw opening issues that i've been having lately.
January 28 Virtual appointment with my primary doc because I'm still not feeling well, getting some steroids and antibiotics.
February 3 getting some bloodwork to check my red and white cell counts.
March 25 My docs decided to stop the Carboplatin and Paclitaxol today due to the fact that it just isn't working. We will also stop the Neulasta. The plan is to just continue on with the Keytruda to help keep the cancer stable. In the event that it grows, we will then go to plan B or C.
June 28, 2021 So frustrated!! I’m allergic to diluaded and the nurse accidentally gave me dilaudid. So had to give me benedryl. Attempt #2 for nasal tube also unsuccessful. He was able to break through right side nasal scar tissue but couldn’t get past neck scar tissue. They are coming soon to start minor feeding through either my port or may have to do a feeding through a picc line until they can do gtube on Wednesday or Thursday.
July 1, 2021 I just found out I will be here until Sunday - most likely Monday unless we have an issue. Moffitt likes me so much they just don’t want to let me go!
We have to slowly introduce the feeding via iv to the gtube over a period of days so that I don’t get sick and have major issues. Best to get it right the first time so I don’t have to come back. Plus I have my next treatment a week from today and was told I may not get it if I am still in- patient. ??
September 23 Thanks to to assistance of my friend, I was finally able to access and update my webpage. My dad was my webpage designer and editor and when he passed I didn't know how to access and update. He had created my page on his Mac computer and I am a Windows girl lol. Alot has happened and I will try and go back and fill in the blanks. I am currently still on Keytruda and my next scan is scheduled for October.
I got some bad news today when I learned that another SNUC girl, Jerri Lynn Dunlap, has lost her fight. She was first diagnosed 5 years ago and has fought strong. May she Rest In Peace.
January 6 Today I had my CT scans of the neck and Thorax. The cancers cells are remaining stable.
January 13 Keytruda infusion #????
January 31 Attempt by local GI to do an esophageal dialation Unfortunately it was unsuccessful because of all the damage from all my prior radiation and surgeries. I got a referral for a physician at USF.
February
February 1 Feeding tube exchange. Quick and easy.
February 2 Quarterly dental cleaning.
February 3 Keytruda infusion #????
February 8 Pre surgery covid testing
February 9 Visit to ENT regarding possible fluid in right ear.
February 10 Surgery #2 at USF to open my nasal airway. Success! But will have to do again in a few months due to scar tissue closing the airway. :(
March 1 Saw a pulmonologist today to discuss possible CPAP machine.
March 8 Apparently my oxygen drops but does not stay down long enough for insurance to warrant a machine so I will look for other options, as it is disrupting to my sleep.
March 15 Taking yet another modified barium swallow study to find out if I am having aspiration.
March 18 My nasal airway is already starting to close again from my last nasal surgery on 2/10/22.
March 21 Regular checkup with my endocrinologist regarding my levels as my thyroid has been radiated off. i may have part of a parathyroid left.
March 24 Went to Panama for the first time for a wedding. I knew it would be an exciting trip but who knew what would happen. On March 28 I was sitting on a balcony overlooking a park with my husband when all of a sudden I felt a violent explosion in my stomach. My feeding tube had exploded! We immediately went to a nearby clinic as there was no nearby hospital and they referred us to the nearest public hospital 45 minutes away. Unfortunately, they didn’t have a doctor available and said it would be a few days until one would be available. Fortunately, a family member was able to contact someone to meet me at a private hospital nearby. Fortunately for me they had my kind of tube on hand, a Mic-key Tube. It was bigger than my usual size by but they made it work. Not my usual hospital experience - I had several people surrounding the doctor - looking over his shoulder as lay on a cot between two curtains. I don't think they replace many of these often, lol.
January 2023
January 5 Today I had my 4th out of 5 iron infusions.
January 11 Iron infusion #5.
January 23 Today I vomited and I wasn’t sure why and then aspirated it.
January 25 Today I had a Bravo study consult regarding my acid reflux.
January 26 Don’t know why but today I have a really bad eye ache and my throat feels foamy. I took a Covid test and it wa negative. Later in the day I say my ENT regarding my right ear tube which is clogged again.
January 27 Today Im getting an esophageal dilation and a colonoscopy. I was dilated from 15 mm to 18 mm. Later that night I started having chills, cough, excess mucus in my throat, fatigue and took a COVID test again and this time it was positive.
January 29 Today I went to urgent care at the hospital because I vomited again and aspirated again. I was diagnosed with double lung pneumonia and a partially collapsed lung. They sent me home with antibiotics and said I would be safer there then in a hospital around a bunch of sick people. Unfortunately I was unable to take the COVID pill because it can’t be taken through my feeding tube.
February 2023
February 4 Went back to urgent care again because I vomited again. Unfortunately, there is nothing I can do to prevent it from happening. I still have double lung pneumonia.
February 8 Today I went to the doctor to get my anemia results from the 5 iron infusions I did. They were at 100 each for a total of 500. Unfortunately they didn’t make any difference.
February 13 Today is a follow up with my cardiologist regarding my high blood pressure.
February 27 Went to Moffitt to get a study of my reflux but couldn’t do it because it involved eating foods by mouth in under 5 minutes and that’s not possible for me. I am only able to eat tiny bites of certain things.
February 28 Went for a dental cleaning again. I have to do this every 3 months because I have to prevent buildup of plaque. All the radiation to my head has caused things to progress more rapidly and we need to try and stay ahead of it to keep my teeth healthy as long as possible.
March 1 Today are my quarterly CT’s of my neck and thorax.
March 7 Went for a consult with eye doctor regarding my cataracts. They have been a result of my head radiation.
March 8 Results of my scans are stable again. I began antibiotics again for a lung infection.
March 14 Pre op for eye surgery and inserts of plugs to help stimulate my tears because I have extreme dry eye.
March 17 Hearing test today to make adjustments to my hearing aids.
March 19 We leave today to do the Cure of Wheels ride from Moffitt Cancer Center on McKinley in Tampa to the Capitol in Tallahassee to present a check to the COO for $40,000. This is the 2nd year that my husband has rode and my first year driving a SAG vehicle to help support the riders. As part of the initial ride is on the trail, I decided to stop by my house to pick up my spare feeding tube, just in case…only to discover that my foster pup that I had gotten 3 days earlier had escaped from my dog walker. Since the riders would be on the trail for several hours I spent the day searching for my foster pup. I couldn’t forego my duties to the riders so I had to continue on and meet them at the next SAG stop.
March 22 My foster pup was caught outside of my community by one of my neighbors. Thank you so much for everyone who helped search for her when I was out of town.
March 23 Today we stopped by the Humane Society of the Nature Coast and adopted our foster pup. I want her to learn to feel safe so that she won’t run away again. Quick backstory…she is one of 21 American Eskimos that were rescued from a breeder in Pasco County. She had spent her first 7 years living in a cage making babies. She had to learn about grass under her paws and what treats were and how to walk on a leash and what toys
