Read how I am doing today under "Post Treatment".
My cancer type:
Head and Neck Cancer: Metastatic Squamous Cell Cancer Stage 4A
The purpose of this blog is not to share or educate on the general facts about this disease. I created a page under the "resource" tab above with links for that information. The purpose of my blog is to share my personal experience and step by step of what I am going through so I can help others going into this for the first time. I know it can be scary for first timers so I hope what I share will help others know what they may encounter. I went into this worrying about all these side effects. I am still in treatment but I doubt 100% of the patients encounter 100% of the side effects.
It was the summer of 2016 when I was diagnosed with cancer. It is my faith in God that has helped me through each step of my treatment.
I noticed a small lump on the right side of my neck in the summer of 2016 and had some concern about it. I made an appointment with my doctor with no idea what I was to discover. I just had a complete physical in the spring so was curious of what could pop up that fast. After an exam, he told me that we needed to do further testing to make a correct evaluation. I was told at this time that it could either be cancer or an infection. What was strange is that I felt fine. With the exception of the lump, I had no other physical symptoms.
Before I proceed, I will share my personal history:
Smoking: I smoked for about 10 years and quit around 1985
Drinking: I started drinking as a teenager for about 15 years and quit around 1992
Drugs: I never used heavy drugs but did smoke marijuana for about the same time frame as drinking.
Obesity: I was seriously over weight and did not start to lose weight until 2012 and have lost over 100 pounds to date. I did consume lots of processed and junk food and blessed that I am not a diabetic.(read my weight loss story)
Could any of the above contributed to my cancer? It is hard to tell. I was told that my cancer is related to HPV and I never knew about this or the opportunity to get a vaccine. I do recommend everyone get this vaccine to prevent getting this cancer. Read more about it HERE on the Ohio Health site.
Now back to my testing.
White Blood Count
The first step was to check my white blood count. It was 9.36 K/mcL on a scale of 4.50 - 11.00 K/mcL which did not show any serious abnormality. He was still concerned so next he ordered an ultrasound.
Soft Tissue Ultrasound
They did an ultrasound on the lymph nodes on both sides of my neck though he was more concerned with my right side.
Results:
Along the superior right neck, there is a well-circumscribed intermediate echogenicity mass measuring approximately 3.4 x 2.8 x 1.6 cm in size with color Doppler flow. Inferior to this, there is a lymph node measuring approximate 1.4 x 1.1 x 0.6 cm in size. Superiorly, there is a lymph node measuring 1.4 x 1.0 x 0.7 cm. In the superior aspect of left neck, there is a lymph node measuring approximately 2.2 x 1.2 x 0.4 cm.
When he received these results, he knew something was wrong and he referred me to an Ear, Nose & Throat doctor for further testing.
The ENT surgeon was also concerned and did an endoscopic exam of my throat by spraying a numbing agent in my nose and running a scope up my nose down into my throat. He saw a few things but nothing that really showed signs of cancer. He then ordered a biopsy.
At this point I was starting to get concerned and worried. I lost hope that it was just an infection and started to worry about cancer. What am I going to do if this is cancer? People die from cancer! I started to feel down and lost hope at this time even though I did not have any official diagnoses yet.
Fine Needle Biopsy
This was an outpatient procedure and was performed by a doctor and a few nurses. It took about 30 minutes to complete.
I had to lie down and they wrapped by head though my face was not covered. I did not get to see the actual procedure but the doctor would tell me what they were doing and continued to ask if I was alright.
To begin, I was given a shot in my neck to numb the area. I do not know what the actual device looked like but I could feel it in my neck. It did not hurt at all. Every now and then it would make a “pop” sound and I assume it extracting tissue.
When I was done they put a bandage on it and gave me an ice pack to prevent any swelling. I was able to walk out and resume with my normal activities. I had no pain or soreness.
The results did show some cancer cells in my lymph nodes.
PET Scan
This takes a few hours though the actual PET Scan only takes about 30 minutes. After midnight I was not able to eat and was only allowed to drink water.
I arrived at the oncology center and was soon taken to the testing area. They first inserted the dye (fluorodeoxyglucose) into my arm. This was a shot but from a small canister and took a few seconds. Next she gave me this drink that tasted nasty. I was asked to drink all of it but I had some time. At this point I had to wait an hour so the dye would reach throughout my body. I recommend bringing a book or some music because that hour seems like forever. You can go to the bathroom but they will escort you to the bathroom. Not sure how other places do it but where I did it, they take you to the bathroom right before testing starts. This is to make sure you do not have to go when testing starts.
When I laid down on the table, I had to lay still until the testing was completed. About half way through, that nasty drink started to hit me. Imagine having to go to the bathroom and remain perfectly still. I was going nuts!
When the test was competed I was able to leave. They could not give me any clue to what they saw so had to wait to see my doctor. Longest wait ever!!
When I did see my doctor he told me that they did not see any signs of cancer in my body. He also said that it appears to be only on the right side of my neck. But they were still not able to determine the place of origin. The next step was to proceed with surgery to remove the cancerous lymph nodes.
Results:
There is a hypermetabolic right level IIA lymph node, image 30, SUVmax 7.8, measuring 2 x 1.2 cm. Normal and symmetric tonsillar activity is identified. No abnormal hypermetabolic foci are noted to suggest a primary tumor in the head and neck and there is no additional hypermetabolic lymphadenopathy. A few additional non hypermetabolic cervical lymph nodes are noted which do not appear clearly enlarged by CT size criteria including a 9 mm left level II lymph node on image 27.
IMPORTANT - Write down questions to ask your team and ask more questions. I listed some of my questions HERE.
Surgery
There were 3 things that they planned to do in surgery. To remove the remaining tonsils, perform a biopsy on my tongue and to remove lymph nodes on the right neck. The surgery lasted about 4 ½ hours and was completed about 5:30 in the evening.
This photo was taken by my daughter in the surgery waiting room. As you can see, I am the only one still in surgery.
Though this was an outpatient procedure, the doctor wanted me to stay overnight to watch drainage. When I woke up after surgery, the first thing I asked was for a mirror. I wanted to see what they did. I was still half way out of it so really did not know what I was looking for. Instead of stitches they used Dermabond which is a glue that is supposed to help create a better surgical mesh. This stays on for 2 weeks.
Prior to surgery I was told that I could experience some pain after the surgery is completed. I was sore in my throat but I had no pain. A tube coming out of my neck for drainage was connected to a small bag
I had an IV in my right arm and one in my left arm though they were only using the one in my right arm. I also had oxygen tube in my nose and inflatable sleeves on each calf to prevent blood clots forming in my legs. It inflated and deflated over and over all night long. It did not hurt but just annoying.
I had a urination bottle and had to go about every 20 minutes because of the fluids they kept putting into me. After about 5 hours I was better.
I wanted to get up and walk around that night but was still a bit queasy and was tired. I just wanted to go to sleep. It was funny because when I tried to fall asleep, I could not get comfortable. A nurse finally brought me some meds to help me sleep.
The next morning I felt more awake and actually got up and walked around the hospital floor. I felt great and still no pain. Just sore. I forgot to mention that I did not lose my voice from the surgery. I was able to talk with no problem.
My throat was sore but I was able to eat. I had eggs, a muffin, soup, and fruit. The banana did not feel the best even though I chewed it up very well.
I was released later that day.
The day after my release I went back to the doctor to have the tube removed from my neck. Very little was draining so there was no reason to keep it in any longer. All they did was grab ahold of the tube and slowly pull it out. I was shocked to see that they pulled out about 8 inches of tube from my neck. Though it was only in my neck for a few days, I was glad to see it go. By the way, I had to keep emptying the bag so it would not fill up but since very little was draining. I did not have to empty it that many times.
Results of surgery
They removed 16 lymph nodes form my right neck
They did biopsies on different locations on my tongue and on the right base of my tongue was a tumor of 0.2cm in size. This is where they determined as the primary site of origin.
Surgery Side Effects
There are several side effects from this type of surgery due to the cutting of the nerves and muscles.
I only have a few and they are minor. The first is that I do have tingling in my skin in the right lower jaw and right neck. The other is that I do have total movement of my lips including my right lower lip but I do notice that my lower right lip is not 100% of the rest of the mouth. I would say it is about 85% of the rest of mouth. You cannot notice it when I talk or just looking at me. It is fine but it is noticeable when I smile (right lower lip does not conform to the smile) and when I open my mouth to eat, I have to watch to not bite the lower lip when I bite off food.
About a week after surgery I did get a small cough that may have been from the scabs within the throat. The cough was very minor and lasted about 4 days. I just sucked on cough drops or hard candy.
I also had to avoid acidic and citrus foods about the first week as they did irritate my throat. After about a week I was able to eat them.
How do I feel? I feel good. I am able to eat and do what I want. I can feel the surgical wound still and it is just an uncomfortable feeling. I know it will subside as it heals. I work out, run and bike. My doctor gave me the green light to return to physical exercises except to not do anything that still puts strain on my neck and shoulder area such as military press and so forth. Other than that, I am back to working out. FYI: I did a two mile walk a few days after surgery which shows how good I felt.
I am exercising my jaw by doing several exercises.
1) I open and close my mouth as wide as possible and I can open wide with no problem
2) I slide my lower jaw to left and right
3) I make big smiles making sure to force lower right lip to work
4) I do the “yes” and “no” movement with my head
5) Massage the neck and face area
Scar healing great after one year
The first few weeks I applied antibacterial ointment to the scar. I now use Gold Bond Ultimate Healing lotion with Aloe. After radiation started I had to stop using all creams/lotions on my neck per instructions from doctor. He said it can interfere with treatment.
Dental Work
Since the radiation treatment can affect the gums it is important to make sure any issues in my mouth are addressed. I have visited the dentist and do have a few filings and one tooth to be removed. I have read of some patients needing all teeth removed. I am thankful that is not the case with me. They also told me that my gums are not too bad. I was told to brush with a soft tooth brush, floss and to avoid any food with sugar during treatment. Gum and candy is good to help with dry mouth during treatment and was told to make sure it is sugarless. I was also told to use Biotene.
Radiation and Chemo Preparation
I still see the ENT but now he referred me to my oncologist team which included a radiation oncologist and a chemo oncologist.
You will have a team of medical professionals during treatment. For myself, I have the following:
- ENT Surgeon
- Chemotherapy Oncologist
- Radiation Oncologist
- Clinical Nurse Practitioner
- Nutritionist who specializes with cancer patients
- Surgeon Specialist
- Oral Surgeon/Dentist
I do not have a spleen since it was removed when I was a child. This means my body has to work harder to fight off infections. To help with this during radiation, I had to get the flu and pneumonia vaccinations to help with any infections during treatment.
Nutritionist
I saw a nutritionist who specializes with cancer patients. She helped me put together a plan on eating both orally and through a feeding tube (if needed). She was a big asset so I recommend anyone going through this to see a nutritionist who specializes with cancer patients. Our goal was to make sure I am getting the needed calories and protein along with not losing weight. She put me on a 2500 daily calorie and a 120g daily protein intake. She recommended Ensure Enlive because it provides 350 calories and 20g protein per serving. Where I get my Ensure, they do not have Enlive but I am getting Ensure Plus that still has 350 calories but a few less in grams of protein. I adjusted my intake to still meet the 120 daily requirement. As for a protein powder, she recommended Tera's Whey Powder as it does not have all the crap that others have. She gave me great ideas on things to add to smoothies which will add calories and protein to my diet. Some protein ideas are peanut butter, cream cheese, ricotta cheese, cottage cheese, Greek yogurt, sour cream, and fish
Treatment
Treatment will last for 7 weeks. Chemotherapy will be once a week and radiation treatment will be 5 days a week.
I will have a feeding tube inserted directly into my stomach that I can use in case eating through the mouth becomes impossible. They will also insert a port under the skin on my chest with a tube connected to my jugular vein which will be used during chemotherapy. Both of these will remain throughout treatment.
I plan to continue working out during treatment. I know fatigue is a side effects but I am going into this in good physical health and will work to remain active during treatment.
Radiation Mask
A mask is used to keep my head still during radiation treatment.
The mask is formed from plastic. I laid down on the CT Scan table. They need my shoulders pulled downward as they form the mask. So they put a single strap on each wrist. Next they had me bend my knees slightly and they pulled the strap down under my feet and had my straighten my legs back out. As I did that. it pulls on my arms which pulls my shoulders downward.
They took the plastic cloth which is hot but not enough to burn and laid it on my face. Than they started to form it around my head. They used cool towels to help cool the wrap. In a bout 5 minutes they had it formed to where they wanted it. Other than it being wet, it is not hard to breathe at all.
Next they mark the mask with points on where the radiation beam will focus. This was followed by a quick CT Scan for about another 5 minutes. When done, they pulled the mask off and I was good to leave.
Pre-Treatment
To get my skin and mouth prepared for treatment, I am applying Vitamin E lotion to my skin three times a day. I am also washing my mouth with a baking soda and salt solution. Not sure if this will be of any value but the reason I am doing this is to go into treatment with healthy skin and mouth.
Port and Feeding Tube
The operation to put in the port and feeding tube took about an hour. This was an outpatient surgery and did not stay at the hospital. As with most surgeries, I was not able to eat/drink after midnight and had to wear the cloth gown. After the surgery my mouth was very dry and I drank a lot of water to help with the dry mouth and get rid of the nasty taste of the anesthesia. It took several hours for the anesthesia to wear off after the surgery.This photo was before surgery.
Port
The port went in my upper left chest under the skin and it connects to the jugular vein. This is used for the chemotherapy. I had no pain and very minimal soreness. Basically I can feel it there but nothing more.
This is a simple procedure but it had one issue that bothered me. When they insert this port and just a small nick on the lung can cause the lung to collapse. That would have opened a whole new set of medical problems and it alone bothered me. I just asked God to touch each person in the operating room and give them the skill needed for a perfect operation and He came through.
Feeding Tube (PEG)
The purpose of the tube is for feeding in case I am unable to eat through my mouth.
They put a scope down my throat into my stomach. They inflate a bag and use a light to look outward through my stomach and abdominal lining. This is to find a good spot to place the tube. After they find the right spot, they poke through from the outside and latch onto the tube in the stomach and pull it out.
Because I have had prior surgery on my stomach (spleen removed), it could have been difficult to find a good spot to poke through. If that would have been the case, it would have required another surgery to enter directly through the abdominal wall. I am glad they were able to do it the first time. The tube latches on the inside by a small balloon and on the outside there is a small plastic plug about the size of a quarter.
This was very sore that night but not really any pain. I had to watch how I would lay down that night so I could relax the stomach muscles. I actually propped myself up a little and slept fine. In the morning it felt much better though still sore.The night of the surgery I walked very slow but that also improved the next day. Something that I found to feel good while sitting is to sit on a resistance ball. It has a lot of give to it so not so much pressure on the abdominal area. After 2-3 days all soreness was gone and I was able to move about normally.
They gave me a Velcro wrap similar to what people wearing around stomach to lose weight. This is to help me from accidentally catching the tube and pulling it out. The doctor said it is up to me if I wore it for the first few days. It does not hurt if you let the tube hang but I took the elastic off a pair of underwear (keep it as a loop, do not cut it). I took that and put it over my head and put it down to my stomach. It works great to hold the tube and I do not feel it at all.
It is also important to keep it clean under the plastic plug. The hole in my abdomen does leak and stuff does get under the plug. I use a q-tip with warm water to wipe around the under side of the ring.
Radiation and Chemotherapy
Chemotherapy
This took 5 1/2 hours to complete (this can vary depending on your treatment plan). There were three stages which are the hydration, pre-chemo (for nausea) and the actual chemo medicine. You are in a comfortable chair and you are able to get up and move around or go to the bathroom. I recommend bringing something to do as it it will be a long wait.
Sodium Chloride: Drip bag - Hydration stage
Magnesium Sulfate IV: Drip bag - Hydration stage
Dexamethasone IV: Drip bag - Pre-Chemo stage
Fosaprepitant IV: Drip bag - Pre-Chemo stage
Furosemide IV: Injection into IV line - Pre-Chemo stag - Lasix-dieurtic(this will make you have to urinate a lot)
Cisplatin IV: Drip bag. This is the actual chemo stage. I had 87mg of cisplatin per treatment with a total of 609mg for all seven treatments.
The panoramic view of chemotherapy room
Radiation
This is a lot faster than the chemotherapy. For my first session they started by taking more photos. After about ten minutes they proceed to the radiation treatment. That lasted about another 15 minutes or so. I could hear the machine with a high pitch buzzing sound as it worked around my head. After that, they came back in the room and I was done for the day.
For future treatments, they do not take any more photos but proceed right into the radiation treatment which will last about 15 minutes.
The following is my dosage:
7000 cGy on right neck lymph nodes and right back tongue
6300 cGy on left neck lymph nodes
5950 cGy on center lower neck lymph nodes
Watch my video of a complete treatment
Blood Work
Weekly blood work to monitor my blood (white blood count and platelets) through-out treatment.
Home Health Care Nurse
I have a nurse who visits me at my home each week to assist me with any issues such as diet and the feeding tube. On their first visit they showed me how to clean and use my feeding tube.
Medications
You are going to go through lots of prescription. Though I had many leading up to this, the ones I am currently taking during treatment are:
- Omeprazole 20mg - Used to prevent acid reflex
- Azithromycin Tablets 250mg - This is an antibiotic and I do not take it unless they instruct me to take it.
- Prochlorperazine 10mg - Nausea
- Gelclair - Mouth wash (My oncologist prefers this over Magic Mouth Wash which I do have)
Chemo and Radiation Treatment
* I will post weekly updates at the end of each weekly treatment. Treatment is for 7 weeks but because of all the holidays, some weeks are partial which extends it out until January 10 (week nine).
Week 1:
- WBC: 8.41 k/mcL (Range: 4.5 - 11)
- Platelet Count: 426 K/mcL (Range: 150 - 400)
- Absolute Neutrophil Count (ANC): 4.62 K/mcL (Range: 1.7 - 7.0) Warning below 1.5
- I really did not experience any severe problems from treatment this week. I did have some issues with nausea and not sure if that was from the treatment or drinking Ensure. I did not drink a lot of Ensure but I did some to keep my calories and protein up. The right side of my cheek also swelled up a little from the radiation. The doctor said this is a post surgery swelling. I do think it has gone down a little already but it can go back up when treatment starts again this week. Other than the nausea and swelling, I experienced no other problems this week.
- WBC: 8.71 k/mcL (Range: 4.5 - 11)
- Platelet Count: 452 K/mcL (Range: 150 - 400)
- Absolute Neutrophil Count (ANC): 6.04 K/mcL (Range: 1.7 - 7.0) Warning below 1.5
- Feel good this week. I am able to eat fine with no issues. I am eating solid foods and they are going down just like I was not in treatment. I will comment though that some foods do not taste all that good as I am getting the metallic taste in my mouth. I will admit that there have been a few times at night where my saliva was a bit thick but it would go away after drinking some water. I stopped drinking Ensure since I do not need it right now. No fatigue though I do stay busy to help prevent fatigue from coming on. No hair loss or any other common side effects.
- WBC: 8.66 k/mcL (Range: 4.5 - 11)
- Platelet Count: 381 K/mcL (Range: 150 - 400)
- Absolute Neutrophil Count (ANC): 6.31 K/mcL (Range: 1.7 - 7.0) Warning below 1.5
- I still feel good. I am able to eat and swallow with no issues though my throat does have a mild soreness to it. The metallic taste is probably my biggest issue as nothing tastes good any more and that causes me to not have an appetite. I did find that brushing my teeth and rinsing with baking soda/salt wash does help a lot before eating. I have also found that tooth paste and most rinses now make me gag. No fatigue or pain but sensitive to odors..
- WBC: 5.82 k/mcL (Range: 4.5 - 11)
- Platelet Count: 337 K/mcL (Range: 150 - 400)
- Absolute Neutrophil Count (ANC): 4.04 K/mcL (Range: 1.7 - 7.0) Warning below 1.5
- Still feeling fine physically. Able to eat and no sores in mouth. My biggest obstacle right now is that I have no appetite to eat. I have to force myself to eat because everything tastes metallic. I have tried various foods and even some I never have eaten in the past. For that reason alone, this week has been very rough. No fatigue, pain or difficulty swallowing. Check updated photo above on scar healing on neck
- WBC: 3.89 k/mcL (Range: 4.5 - 11)
- Platelet Count: 212 K/mcL (Range: 150 - 400)
- Absolute Neutrophil Count (ANC): 2.22 K/mcL (Range: 1.7 - 7.0) Warning below 1.5
- I am still doing fine physically as I am not dealing with any fatigue or pain. I am active such as working out and taking long walks. I have noticed a little hair loss on my head but since I only have 2 more chemo sessions left, I would not expect too much more hair loss. My biggest issues are still in my mouth.; Everything just taste nasty and I have no appetite. My blood count and weight has come down and I feel this is because some days I have not taken in the required calories. I am still able to swallow fine but it is the metallic taste that is the issue. I will continue to eat orally things like yogurt, cottage cheese and so forth but I am going to start using the feeding tube to make sure I get in the required calories. I think that is best for me at this time. I have also noticed some gagging. This is not with swallowing but the thought of some things just makes me gag. No vomiting, just gagging. I do have some redness to the neck skin from radiation and mild itching. I do not itch it though. I just rub it so I do not irritate the skin. Current Side Effects: Metallic taste, thick saliva, dry mouth, gagging, skin irritation.
- WBC: 3.16 k/mcL (Range: 4.5 - 11)
- Platelet Count: 175 K/mcL (Range: 150 - 400)
- Absolute Neutrophil Count (ANC): 1.98 K/mcL (Range: 1.7 - 7.0) Warning below 1.5
- Still doing fine physically as I am not encountering any fatigue or pain. My problems are mostly in the mouth such as the metallic taste and thick saliva in the mouth. Of course, the simplest things still make me gag. I had a small Christmas dinner but did not enjoy it much. I noticed that a green bean irritated my throat and it felt like something was stuck in my throat. I was still able to eat and tried to knock it down. I think what it did was cause inflammation. I was able to breathe fine so I figured if it is still there in the morning than I would go to doctor. It felt fine next morning. The radiation burns on my neck do itch ans have to make sure to not scratch it. Current Side Effects: Metallic taste, thick saliva, dry mouth, gagging, skin irritation.
- WBC: 3.30 k/mcL (Range: 4.5 - 11)
- Platelet Count: 265 K/mcL (Range: 150 - 400)
- Absolute Neutrophil Count (ANC): 161 K/mcL (Range: 1.7 - 7.0) Warning below 1.5
- I have noticed that my blood count has actually gone up this week over last week. That may be due to working to get in my daily calorie/protein numbers. Completed chemo this week so now I only have two weeks left of radiation. The photo at the right was my send off at my last chemo session. Not much has changed this week on how I feel except I started to feel some anxiety. I got a prescription to help me deal with the anxiety. Current Side Effects: Metallic taste, thick saliva, dry mouth, gagging, skin irritation, anxiety.
- WBC: 2.50 k/mcL (Range: 4.5 - 11)
- Platelet Count: 361 K/mcL (Range: 150 - 400)
- Absolute Neutrophil Count (ANC): 2.51 K/mcL (Range: 1.7 - 7.0) Warning below 1.5
- Weight: 3 pound loss this week. - 18 pound total loss since treatment started
- No big differences from last week though I will mention the changes I did have. The back of my throat is getting sore and does make it more difficult to swallow. As for taking any medication, I take them one at a time and if the pill is too big I dissolve it in water and put it through my feeding tube. At this time I am taking my food through the feeding tube but not by choice. I can still swallow but just more comfortable to use the tube. I still make a point to drink water several times a day orally to use the muscles. I also still take some pills orally. I have noticed that the metallic taste has gone down some since chemo has ended but the mucus just tastes nasty and does cause some gagging. The mucus is mostly in my mouth and does not effect my breathing. That means it is not in my throat. I do vomit at times but not really from my stomach. It is mostly just gagging reflexes. My mouth really has not developed any major sores. I just noticed 2 and they seem to come and go. Current Side Effects: Metallic taste, thick saliva, dry mouth, gagging, skin irritation, mouth sores, vomiting, anxiety.
- WBC: 3.55 k/mcL (Range: 4.5 - 11)
- Platelet Count: 517 K/mcL (Range: 150 - 400)
- Absolute Neutrophil Count (ANC): 2.21 K/mcL (Range: 1.7 - 7.0) Warning below 1.5
- This was my last week of treatment and all chemo and radiation treatment is now completed. I think most of my side effects are the same with the exception that my throat does feel a bit more sore than last week. I am still drinking water orally and also taking small pills orally. Now that treatment is over I would say that the biggest issue I had was mucus in the mouth. Current Side Effects: Metallic taste, thick saliva, dry mouth, gagging, skin irritation, mouth sores, vomiting, anxiety
The following is a summary of my treatment and how I felt through treatment. Over all I felt fine. My doctor said that most people who are as far into treatment towards the end are in much worse conditions. As I have said, I truly do believe that I came through this by trusting in God to get me through it. I actually did nothing special to help me.
Below is a complete list of my side effects. The number following each side effect is the intensity level. Number 1 is lowest, 5 is moderate and 10 is extreme.
Anxiety (3)
This was toward the later part of treatment and I was prescribed Xanax and it seemed to work very well.I did not deal with any severe anxiety but it was enough to make me feel uncomfortable.
Appetite (10)
I had no appetite to eat about half way into treatment. I experimented with different foods and some were tolerated longer than others but the actual desire to eat was absent. This is the main reason I started using my feeding tube which was because I was not eating and getting in my daily requirement.
Dry Ears (10)
I thought this was a strange one but my body stopped producing ear wax. My ears were completely dry. Other than being dry, there were no other issues with the ears. I could still hear fine and I just made a point to make sure to clean my ears with water and cotton swab.
Dry Mouth (3)
I think I dealt with mucus in the mouth more than dry mouth. When I did have dry mouth it was mostly at night or in the morning. I would just drink water and it was fine. I was unable to use magic mouth wash or any other mouth wash due to the fact that everything made me gag. So all I did for my mouth was to wash it with baking soda/salt water.
Eating / Feeding Tube (7)
I was able to swallow up to the end of treatment. My throat was mildly sore and the mucus made a bad taste so I just did not care to put a lot of food in my mouth. When I did that I was not getting the daily required intake. So around week five I started to use the feeding tube to take in my nutrition. I still made sure to use my mouth and throat muscles by drinking water and some soft foods such as apple sauce.
Gagging (5)
This was just annoying. I think the cause of this was the thick mucus in my mouth. I dealt with this daily but it was not an all day thing. I found that the best way to cut down on the gagging is to reduce the mucus.
Hair Loss (3)
I am taking the drug called Cisplatin for chemotherapy. I was told that this drug usually does not cause hair loss but it can cause thinning. I have not noticed either but I have noticed that my hair stopped growing. Works for me because I do not have to shave. After chemo is over, it will return to normal and start growing again.
Metallic Taste (8)
For the most, all food had some level of bad taste. So I tried to find ways to remove some of the metallic taste in my mouth before eating. I figured if I could reduce that taste than the meal may not be as bad. Prior to eating I would brush my teeth and rinse with a baking soda/salt rinse. This seemed to help some and made the meals a bit better.
Also, try to avoid metal silverware. Use plastic instead. Same goes with canned food. For example, applesauce tasted much better from a plastic jar than it did from a metal can.
Mucus in Mouth (6)
I would have to say that this may have been my biggest issue. It was all in my mouth so none was in my throat. It did not effect any breathing. I would try to keep it down by drinking cool water as it helped wash it down my throat. It was hard to spit it out and that would cause me to gag so I preferred to swallow it or wash it down. I tried to not let it get too bad because the worse it was, the harder it wash to wash down my throat and that would also cause some gagging.
Skin Irritation (6)
This shows the right and left side of the skin irritation from the radiation. You can see that it is visible but not that bad. You can see some of my hair loss at the back of my head in one photo. Now that treatment is over I am using the Gold Bond Ultimate Healing with Aloe on it.
Sore Throat (3)
The sore throat did not really pick up until around week 7. It was not too bad but it was enough to know that it was sore.
Vomiting (4)
I can only remember 2 times where I actually vomited from my stomach. All the other times were just vomiting reactions with minimal liquid.
Weight Loss (9)
I lost about 22 pounds through-out treatment. That is way too much weight. I still believ some of that was due to the fact that there were days I did not get in my required calories and protein.
My exercise treatments
Yoga
Light resistance workouts.
Long walks
See here for list of exercises for jaw and mouth area: Cancer Exercises
Staying Strong
I was on my way to work when I was given the news about the cancer. I felt like the world (life) was just taken from me. All I could think about was that this disease kills. I wanted to call off work but I am glad I did not because at this moment I did not need to sit and let my mind wander.
I started to talk to others and started to learn more about my particular cancer. It helped lift my spirits and I started to feel better about life. I was determined to fight this and live a long life.
I know this is hard but it is important to connect with others. For myself, I shared my experience with others including family, friends, my church and support groups. I am a Christian and I turned this over to God and I believe He has been with me throughout my treatment. I honestly believe that is why my side effects were not as severe as many others going through this same type of treatment. He is Great!
Regardless of the cancer you have, it is vitally important to connect with others. Do not attempt this on your own. Others may not know what you are going through but they can still offer valuable support.
Talk to other cancer patients as they can also give you valuable advice. They have been though it so they can help you face this with a better perspective.
It is also important to follow your doctor’s advice and stay active. Listen to what he/she tells you and make sure to do some form of physical activity daily. Never give in to this disease!
Click here to read how I dealt with the excess skin after treatment on my other blog
Click here to read my post treatment care
No comments:
Post a Comment