Wow….NOT the day we had HOPED for.

Where do I even start? Today Steve and I had his appointment with the Radiation Oncologist and Medical Oncologist to go over his PET scan results and to plan the start of radiation. Well change of plans…no radiation we are going back to chemo. Yes you read that right Steve has to resume chemo for the next two months…SHOCKED, so are we! I really don’t even know where to start so hopefully you can follow this crazy rambling that is going to take place.

About 10 days ago Steve woke up in the middle of the night stating he was sweating a little and he was a little nervous and upset about it. I told him that he was okay and that he might just have a virus because everyone around us is sick and it wasn’t drenching like his previous symptom prior to being diagnosed with Lymphoma. Then the next day he pointed out a small lump on the left side of his neck and a small rash just underneath it. I looked at it and felt around to see if there was any other and wasn’t too concerned because he didn’t have any lumps down around the collar bone. I told him to watch it and to make sure we have Dr. Beck look at it when we go back in. Inside both of us were nervous but since he was only 3 weeks post chemo we kept telling ourselves that it couldn’t be related to the cancer. Today on our way to the Radiation Oncologist Steve told me he just didn’t feel good about things and was worried that the results are not going to be good. Unfortunately his gut feeling was right. In walked the doctor and she said well you are not done with chemo. I can’t recall the next words that came out of our months but pretty sure it wasn’t appropriate…oh well can you blame us? Next she went on to explain that there is activity in his mediastinum and small lesions in both his lungs that was not noted on his last PET scan. So does this mean that the PET scan didn’t pick it up last time, or that he is relapsing already? Nobody has the answer to that question unfortunately so we have to move forward with the unknown. So here are our options: two more months of chemo then follow up with another PET scan, a Mediastinoscopy (English term- cut open his chest to get a biopsy of the lump nodes on his sternum: inpatient hospital stay) or start consulting with a doctor to have a BMT (bone marrow transplant – stem cell transplant – is when blood-forming stem cells are collected (harvested), frozen and stored, then given back to you after intensive chemotherapy and radiation therapy. Most times this is performed as an inpatient procedure where you are in the hospital for 3 or more weeks). Umm…is none of the above an option? No…so we left the Radiation Oncology office a little upset, confused and discouraged because she wasn’t really clear and honestly and little rude with our questions. Next we went back over to meet with Dr. Beck to go over the results in more detail and to make a plan of action. After further clarification we agreed that we would continue with two more months of chemo but watching his symptoms really close and if things don’t get better or he becomes more symptomatic that we will stop chemo and look at the next two options listed above. So off to chemo he went TODAY…this was not on our agenda for the day! Normally during his chemo treatments I stay just in case he would have any reaction I want to be there to know what is going on but today that wasn’t an option I had already scheduled hair appointments for the boys and Steve said to go ahead and go that he would be fine. He was right he was fine and Dr. Beck and Shelley was great. They both sat and talked to him for 30 minutes answering any questions he had and giving him encouragement that he can do this.

What a day….so far he feels okay but tired. He is a little sad and discouraged but says he will beat this one way or another.

I love you babe. You can do this, you are stronger then you give yourselve credit for!

~LET YOUR FAITH BE BIGGER THAN YOUR FEAR~

Angie

Conquered Chemo!

He did it....Steve has conquered Chemo. What a bittersweet day. As much as we dreaded today coming and having to go to chemo it was so nice knowing that it was the last treatment. Today’s treatment was hard for Steve and that just gave us a greater appreciation for being through with chemo. As a lot of you may know the past 6 weeks of treatment has been hard and the last round was no exception. Steve was sick for about 12days of the 14 day interval. But enough about chemo...on to bigger and better things. On December 8th Steve will have another PET scan (3rd) that will confirm that the cancer is gone and to help the Radiation Oncologist map for radiation that will start next month. Then on the 13th of December we will meet with Dr. Beck and the Radiation Oncologist for the PET scan results and to get all the details of radiation...sorry I don't know how many rads (dosage) he will be receiving.

Last with Thanksgiving next week I would like to list the many things that we are grateful for because we know we are blessed in so many ways.....

1. We are grateful to be getting Steve's health back.
2. We are grateful for two of the most amazing little boys that GOD gave us and trusted us with.
3. We are grateful for all of our family and friends that have support us throughout our lives and even more during these past 4 1/2 months.
4. We are grateful for all the research and study that has been put into Lymphoma research. This has given Steve and me the opportunity to raise our boys together, share more holidays together and create a lifetime of memories together that we may have never had the opportunity to do.
5. Oh I could go on and on but I will spare you all with the details.....

Steve and I celebrating Logan's 4th Birthday!


Logan and Cole with their friends.


I can't beleive how far we have come since that dreadful day in July when our world was turned upside down to today. We went from not knowing what the future would hold to knowing that we will have decades ahead of us to cherish what has been given to us.
HAPPY THANKSGIVING!

XOXO

All is good....but not easy!

Yes all is good! Steve is progressing on with this and there is a light at the end of the tunnel. Has it been easy these last two weeks? Heck no it hasn’t been easy. Steve has been sick pretty much every day since his last treatment and he has lost his mind which makes it even more frustrating to him. Steve’s overall complaint is being sick to his stomach and forgetfulness. Today when Dr. Beck ask how everything went these past two weeks Steve said, “It sucked. I am sick to my stomach and I feel like I am losing my mind. I forget everything and things that only took me a minute to do take me forever.” She explained that it is normal and the best way to control it is not to try and multi-task and make sure he is getting plenty of rest. I asked if this will get better once treatment is over and she did reassure me it will…thank goodness we can’t survive in this world with two of us being mindless. Steve and I were relieved to hear his blood count was good enough for treatment and barely good enough to bypass the Neupogen shot again since he has felt so bad. He even said to me on Monday that he couldn’t believe he has treatment in 2 days because he doesn’t feel like he has recovered from the last dose.

Now I need to mention how much I love and appreciate my husband. He has been a fighter through this whole processes and even when he was feeling terrible he never gave up and has continued to fight and support his family. Steve has yet to miss a day of work due to his condition with the exception of going to treatment. When people ask Steve how he is doing he always says good, regardless of how he is truly feeling on the inside. Why does he do this? Because Steve doesn’t like the attention on him, he doesn’t want to talk about treatment and he definitely tries to keep mind over matter. I know this past month hasn’t been easy and I pretty sure the next month will be tough of him also as he finishes up chemo but I know he can do it. I know at times Steve gets inpatient with the kids and I then feels bad for not having patients with us but I tell him we understand and not to worry about us we are fine and I realize it is just because he is sick of feeling crappy. After all who am I to complain he did put up with my hormones while I was pregnant with the boys and I’m sure there will be another pregnancy he will have to go through again. We love you babe and can’t wait to celebrate with you when this is all done and over with.
XOXO
Angie
LAST CHEMO: Nov 16th
PET Scan: Dec 8th
Radiation: start middle of December

Round 6 ..... 2 more to go!

Lets just say the last round sucked....I didn't think I was going to get Steve back there today but I did with only a little kicking and screaming. After round 5 Steve had to have a Neupogen injection (G-CSF) to assist with his low white blood cell count. This by far has been the worst part of this whole entire process for him. He was sick for 7 days and 2 of those days he was in a lot of pain that kept him up all night. Finally around day 8 he started to feel better which was just in time for our vacation.


Today Steve's blood counts all looked great so this round he doesn't have to have the Neupogen injection again and Steve is so excited about that. Hopefully this round without the injection goes smoother then the last but Steve has been in bed since we got home so I am getting a little nervous that we might have a repeat of the last round.... here is to hoping he is just TIRED!

On the agenda: 2 more rounds of chemotherapy then another PETS scan just to confirm all is good and nothing has been missed. Last 3 weeks of radiation that is estimated to start the middle of December.

Round 5/PET Result/Radiation Oncologist Consult

The results are in and although they are GREAT we still have to continue with 4 cycles (8 treatments) of chemotherapy. Why? Well the scan came back clean meaning NO CANCER detected, but he still has a large tumor on his chest, swollen lymph nodes and a slightly enlarged spleen. When Dr. Beck told us it was clean we were so excited and Steve said "so I only have two more chemo treatments?" And she said two more cycles so 4 more treatments...let’s just say he wasn't happy and said a few choice words. Next we went back to the chemo room to start round 5 and as usually they did his blood work and to our surprise it wasn't as good as we could have hoped for. He is neutropenia (is a hematological disorder characterized by an abnormally low number of neutrophils, the most important type of white blood cell. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening.) We did go ahead and proceed with chemo but he has to go to IMC tomorrow and have an injection of G-CSF (Granulocyte colony-stimulating factor -It is a glycoprotein, growth factor and cytokine produced by a number of different tissues to stimulate the bone marrow to produce granulocytes and stem cells. G-CSF then stimulates the bone marrow to release them into the blood.) Hopefully with this injection and a little more modification in his diet we can get his white blood cell count back up and maintain it so we can avoid further injection after later chemo treatments. Overall we are very satisfied with the results and we are still pleased that he will only have to have 4 cycles instead of the average 6 that most individuals receive. This round so far hasn't been the easiest about 2 hours after treatment he started to get sick to his stomach and an overall feeling of being ill. Last we did consult with the Radiation Oncologist last week to go over his original PET scan and to discuss what will happen once Steve has completed chemo. After chemo is over Steve will get a 3 week break then he will receive radiation 5 days a week for 3 weeks. The Dr. explained once you have a clean scan most medical oncologist will give you 2 more cycles of chemo then send you to radiation. Steve asked if I am clean why do I still have to have chemo. She explained to us that killing 99.9% of the cancer is not acceptable. We have to cure this 100% or he will relapse and he will be looking at a stem cell transplant and that usually means a month stay in the hospital....definitely not what we want. Steve asked if he could see the actual image of the original PET scan because he keeps hearing about this tumor in his chest but he has never had a cough, shortness of breath, pain in his chest, etc. She said yes and we went to her office where she pulled the image up and showed us. Let me just say we were expecting to see a quarter size tumor on his chest (figured it would be small since you are looking at an image) and wow were we wrong. He has a very large tumor that is pressing on his chest cavity and lungs. This brought back that horrible sick feeling that we experienced when Steve was first diagnosed with Lymphoma. But it also did validate how important it is that we continue aggressively fighting this even though Steve has been feeling so much better.
Thanks for all the calls this week checking in on us and seeing how everything is going. Sorry it took me so long to get this updated today.

Much Love To All!

Chemo Round 4

Really can things be going this good? Yes they can and they are! The past 2 weeks have been GREAT for Steve. After Steve's 3rd round of chemo he just kept saying to me, "I still feel good when you think it will hit me?" Well I am so excited to report he NEVER got sick this time around. What a great two weeks it has been! Last week he did shave his head, not completely bald but shorter to try and help with the shedding. But he still looks great and nobody can tell he is going through chemo still. YEAH! Today we met with Dr. Beck and things are going better than we ever imagined. Steve has gained 2 lbs. so he is about to his base weight and his blood work was OUTSTANDING....his labs were the same as they were prior to treatment! So based off how well he is doing we are moving forward and we will meet with the Radiation Oncologist next Wednesday and have a follow-up PET scan on October 3. Get this...if his PET scan comes back clean we will only have 2 more treatments of chemo! Yes that is right that means Steve would only have three months of chemo instead of the initial six mouths we thought he was going to have. If the scan comes back with drastic improvement from his first scan but not clean then he will have four more for a total of four months and if it is improving but not as fast as we are expecting then six, but she really feels good about things...which explains why we are meeting with the Radiation Oncologist next week. So please send lots of good thoughts and prayers that his scan is clean and we will have all of this behind us before THANKSGIVING!!!

THANK YOU, THANK YOU everyone for all your support and prayers they are paying off!

Love,
The Wayman's

Chemo Round 3...

Yesterday after dropping the kids off to Grandma's so we could head to chemotherapy the first song that came on in the car was "I'm Gonna Love You Through It" by Martina McBride. Neither Steve nor I had ever heard this song before and it definitely touched home on what we are going through. This song is about a 38 year old lady who has 3 kids and was just diagnosed with cancer. Although they did catch it in time she has to face the struggles of treatment. In the end she does get through it with her husband’s support. WHOW is all I can say as we listened to it and then sat there and stared at one another. After Steve asked me if I was ever scared of what was going to happen. I replied of course I was before we knew what type of cancer he had. I was scared to death that if something ever happened to Steve that I would be ALONE without my husband and best friend. I would be raising two small children ALONE, and could I ever express to Logan and Cole how much their dad loves them and what an amazing man and father he was....hell yeah I was scared. But today that imagine doesn't even cross my mind because I know he will be cured and six months from now this will all be behind us and we will be back to our normal life. Then I asked Steve what about you and he replied, "There is not a doubt in my mind that I will beat this!" Well after meeting with Dr. Beck we have even more confidence that Steve will be CURED from this once we are all done. Here is a run-down of what we went over.... weight looks great no loss or gain, symptoms she is so impressed with how few side effects he is having. She stated she has some patient that come in and they have every side effect possible and the have quit their jobs because they are so sick and can't get out of bed...nope not Steve he even went and worked a 9 hour day today then played softball and won by 20 points. Steve told her he thought he would do better than he is doing because he hates how sick he feels for 3-4 days. She stated first you have always been a healthy person prior to all this so I think you have an expectation that you shouldn't feel sick at all but you need to remember you do have cancer and this is a very aggressive treatment to treat it and you are doing outstanding. Next we went back to have treatment and even when the nurse was talking to Steve and asking him how he was feeling she commented on how well he was doing because he was having such little side effects. She then took his blood to make sure his blood counts were all up so he could receive treatment and they were....actually they were better than chemo round 2! So the plan remains we will have Round 4 on September 21 then we will schedule another PET scan to see how things are moving along and to confirm how great he is doing.

Much Love!
The Wayman's

What a nice break!!!

Sorry I haven't updated since Steve's last treatment but I must say we were enjoying our break from doctor's appointments and treatment. Yes we finally got one whole week off from appointments since this whole thing started 8 weeks ago. Whow did that time go by fast because tomorrow we are back for round 3 of treatment and I must say Steve is definitely not thrilled about it at all. Overall Steve did fairly well again. He had his normal 3-4 days of feeling like he had the flu, a couple mouth sores and this time he scalp was a little tender. Overall Steve is staying strong working full time and playing softball twice a week which will help to keep him strong when he is nearing the end of his chemotherapy treatment.


Oh and I must say that Traditional Medicinal Organic Nighty Night tea has been a life saver. After 4 nights of NO sleep I bought this tea for Steve and he drinks it about 30 minutes before bed and he is out and usually only gets up once a night. I so did not want him taking a prescription to sleep.
Credit: Free images from acobox.com
















Hope you all enjoyed you Labor Day weekend and are doing well. I will post tomorrow after treatment if there is any new news otherwise I will post in a week.

Lots of love...

The Waymans

Chemo Round II

First I would like to thank all of you that have sent cards, emails, letters and brought stuff by. Steve and I are so grateful for everyone’s help and support …thank you, thank you, thank you!!!
Today was round II of chemotherapy and so far it has been a lot better than the last round so let’s keep our fingers crossed. Prior to treatment we meet with Dr. Beck to go over anything new that has happened since last week and to complete another physical exam. Last week Steve felt AWESOME! After the physical exam she was very impressed with the progress Steve is making a mentioned that his lymph nodes have decreased in size by 50%. She stated that if everything internally is responding as well as she thinks it is Steve may only need FOUR months of chemotherapy instead of six!!! So with that being said we will continue with 3 more rounds of chemotherapy (including todays) then have a follow up PET scan. Back to the treatment room we when to meet with Shelley where she completed lab work and confirmed everything looks good to go ahead and start chemo. Steve’s lab work looked great with only his WBC a little low but nothing concerning. All in all nothing exciting which is GREAT news…..Oh unless hearing you husband yell from the shower this morning, “I GOT HAIR”! I go running in the bathroom thinking he is got a hand full of hair but what he meant was he still has hair after 14 days. Yes he is a little nervous about losing his hair and says if he does he is buying a JO DIRT wig.

***NOTE: Changing blog name from Steve’s Journey Beating Hodgkin’s Lymphoma to Scuba Strong…per Steve’s request.

Nurse Shelley! / Scuba STRONG

I forgot to post about Steve's Chemo Nurse. She is excellent and has the best personality for Steve...they both love to joke around. I didn't blog about their conversations from his first treatment and I regret it because I have already forgotten what was said. These will be great to look back on in a year or longer.

Yesterday while Steve was in the lab having his blood work done nurse Shelley walked in and here is their conversation.

Shelley: Hey good looking, how did your treatment go?
Steve: OH...there was a couple days that SUCKED but I am feeling a lot better.
Shelley: Good you will be feeling really good by next Wednesday just in time for us to knock you down again.
Steve: Thanks...can't wait.
Shelley: Hey I told you I will always be honest with you!


Last night Orin (one of our very BEST Friends) came over and he brought a bunch of
bracelets that he had made up to support Steve during his fight with Lymphoma. The color that represents Lymphoma cancer is LIME GREEN. So he bought a bunch and had SCUBA STRONG engraved on them for all of our friends and family to wear in support of Steve during this fight. Thanks MONSTER you are the BEST and Steve and I are so lucky to have such and amazing friend in our life. This meant the world to Steve!

One Week Post Chemo Follow-up

Today Steve had his one week post chemotherapy appointment to go over any side effects he has had, blood work to make sure everything is in balance and physical examine to watch for any red flags. In Steve’s words day 2-4 SUCKED! He was nauseated, extremely fatigued and got mouth sores. This weekend I felt so helpless. He was so sick and I tried everything to make him feel better and all he would say is “I don’t know how much more I can take of this. I am sick of being sick!” Come Monday he was improving drastically. Yesterday was the BEST I have seen him in months! This is a huge relief because now he knows there will be bad days while treatment continues but they all won’t be bad. So for his side effects she was glad to hear he only had to take two pills for nausea and nothing else. She is going to change his prescription for the nausea to give him something that will control that but also maybe help with the fatigue also that he will only take the two days post chemo. She thinks this will help more since the other drug helps the nausea but it also causes drowsiness which doesn’t go good with the fatigue he is already fighting. For the mouth sores we got those under control really quick with warm salt water so she stated to continue that day 2-5 after treatment to try an avoid getting them at all. Overall he really didn’t have any major side effects that a lot of people deal with. Blood work looks great. His blood work showed that his red blood cells are already back to the normal range so he is good to have his next treatment next week, but they will check his blood work again just prior to make sure nothing changed from this week to next week. Upon his physical examine she stated that she can already feel the individual lymph nodes in his neck compared to one mass running down the side of his neck to his collar bone. Last Steve stated he has not had any night sweats since treatment has started. All of these are great signs that his body is responding positively. As for now he is feeling a lot better and excited to have a good week and enjoy time with his sister, niece and nephew who are coming in town this week! YEAH!

Results/Chemo round 1

Today we had another appointment with the oncologist to go over all the results from last weeks test.
Echocardiogram: everything looks great!
Bone Marrow Biopsy: negative for cancer!!! Great News!!
PFT: Lungs are healthy!
Chest X-ray/CT/PET Scan: After review of all the scans the oncologist is leaning towards a II(B)(E). The II stage indicates that the cancer is in two different lymph nodes or the cancer is in a portion of tissue or an organ and nearby the lymph nodes. But the cancer is still limited to a section of the body either above or below the diaphragm. Next the B indicates active symptoms as stated in previous post. Last the E indicates that your cancer has grown outside of your lymph nodes. Based of the PET scan it was hard for them to determine if the bones or lungs are involved because of the bulky mass throughout his chest cavity. If his lungs or bones are involved he will be changed from stage II to IV. This will be look at again at his next PET scan in 2 months. So with the above staging he will definitely need 6 months of ABVD chemotherapy followed by radiation therapy. She gave Steve a prognosis of 75-90 he will be cured from this.

After his appointment he went for his first round of chemo. While the chemo was administered he did great, but about 2 hours later he went down hill fast. He started to get very nauseated, achy then fever with chills. I called the on call doctor because I couldn't believe how fast everything hit him and he just kept telling me how horrible he felt. The doctor explained this was all normal but to definitely call if his fever rises above 102 or he gets the chills to the point he can't control the shaking. The doctor was great and stated we much rather you call then not so please don't hesitate I will be available all night. It took us about 45 minutes to get this all under control then he just felt like he had the flu. I was able to get him to drink a smoothie then he was ready for bed. Hopefully tonight he gets a good night sleep because last night he didn't and he definitely needs it.

1 round down 11 more to go!

Thanks everyone for your support we couldn't get through this without every single one of you!

Andrology Results

Yesterday we heard back from the Andrology Lab and in a round about way they told me that the odds of Steve and I having another kid are not in our favor. Unlike other blood cancer Hodgkin Lymphoma can definitely impact male fertility. With that being said Steve and I cannot be more grateful for the two amazing little boys that we have been blessed with. We both realize there are thousands of couple out there that would love more then anything to have just one child. But that doesn't mean we will give up or that we don't believe in miracles. Last night at dinner Steve said, "Babe for some reason I feel that we are going to have another kid!" Oh how I love that man...he is so determined!

More results Wednesday......

History

June 2011 Steve noticed a lump on the right side of his neck and asked me what I thought it was. I stated I don't know but I think he needs to have it checked out. That night when we went to bed I couldn't sleep thinking about it and wondering what possibly could be going on. So I got up and went to the computer and goggled lump in neck and fatigue. Yes he has been fatigued for several months now and I have suggested maybe he needs to have some blood work done. Steve stated he works manual labor and that is why he is so tired. I agree 100% he works really hard and he hasn't had a break but I reminded him he is still on 32 years old. And as most men and some women do he brushed it off. So as I was stating I goggled his symptoms and what pops up LYMPHOMA. I started reading about Lymphoma and here are the most common signs and symptoms:
*Often, the first sign of lymphoma is a painless swelling in the neck, under an arm, or in the groin. (Steve has 2 lumps on the right side of his neck)
*Lymph nodes or tissues elsewhere in the body may also swell. The spleen, for example, often becomes enlarged in lymphoma.
*The enlarged lymph node sometimes causes other symptoms by pressing against a vein or lymphatic vessel (swelling of an arm or leg), a nerve (pain, numbness, or tingling), or the stomach (early feeling of fullness).
*Enlargement of the spleen may cause abdominal pain or discomfort.
*Many people have no other symptoms.
Symptoms of lymphoma may include the following:
*Fevers
*Chills
*Unexplained weight loss (Umm..my sister asked me if Steve was feeling well a couple weeks ago because he looked tired and like he has lost some weight.)
*Night sweats (YES...he has woke up several times in the past 5 months periodically complaining that he is sweating.)
*Lack of energy (YES=fatigue)
*Itching (up to 25% of patients develop this itch, most commonly in the lower extremity but it can occur anywhere, be local, or spreading over the whole body)

I think my heart stopped for a minute after reading this and realizing Steve has 1 sign and 3 symptoms of Lymphoma. That night I laid there watching the clock waiting for 8:30 to come so I could call and get him an appointment. First thing that morning I was on the phone to Dr. Gee's office making an appointment for Steve and explained I would like a full panel of blood work because he hasn't been feeling well.

July 7, 2011-
Me: "Steve you have to fast this morning for blood work."
Steve: "Really what will it hurt if I just eat a little."
Me: "If you aren't going to fast your wasting you time going."
Steve: "Alright, relax I won't eat."
Me (as he is walking out the door): "Remember to tell them I want a full panel and let them know how you have been feeling."
Steve: "Bye, I love you."
(I sensed a little sarcasm in his voice. Yes I am a LITTLE over protective.)

An hour later Steve calls.....

Me: How was the Drs?
Steve: Good
Me: Did they run a full panel?
Steve: Yep, plus some.
Me: What did he say?
Steve: "I look good but he is going to send me to a DERMATOLOGIST to look at my neck."
Me: "WHAT a Dermatologist?"
Steve: "Well while I was talking to him he said he wants to get it checked out by a specialist like an ENT (ear, nose and throat) but they gave me an appointment card with an appointment on Tuesday at a Dermatologist."
Me: "Steve turn the card over is there another name on it?"
Steve: "Oh yeah!"
(They gave him the Dermatology card because it had the address since they are in the same building. But he missed that minor detail.)
Me: "Okay well I am going to call the ENT that Logan went to since I liked them. So what else did he say?"
Steve: "Nothing really, we can talk more when I get home from work."

Later that night at dinner I asked if he had stated what he thought is was and he said,
Steve: "Worst case scenario, M something."
Me: "Melanoma"
Steve: "Yeah I think so."
Me: "That is a form of Cancer! Also did you tell him about the night sweats?"
Steve: "Nope I forgot, but guess what I have lost about 7 pounds"
(Not what I wanted to hear.)

Okay lesson learned I will be attending all further appointments with my husband. I realize unless you work in the medical industry or have a medical background this can be all to confusing.

July 12, 2011-appointment with ENT

First I must say we have the most amazing ENT clinic......
No wait, they got us right in and back and asked what symptoms Steve was having. When he indicated he had some lumps on his neck (approx 4 now) she quickly examined and asked if he was having any night sweats, fatigue, weight loss, or problems eating. Steve replied. "yes, yes, yes and no". Next she stated I definitely don't like the way this one by your collar bone looks so I am sending you for a CT scan ASAP. She did indicate that it could possibly be an infection but with the lump by the collar bone she was concerned. They schedule Steve for a CT scan first thing at 8:00 the next morning.

July 13, 2011

Steve had his CT scan this morning and by 1:00 they called and stated that it didn't look like an infection and they wanted him back in there at 4 pm today for a needle biopsy. Steve called me to tell me and I could hear the fear in his voice. As I tried to talk and ask questions he stated, "I don't want to talk right now I will call you back." The kids were both down for their naps and I was trying to get some work done and I broke down. I called my mom bawling and stated how scared I was and how worried I was about Steve because he didn't want to talk. I quit working and just sat on my couch and cried. I couldn't take it anymore so I called him back and asked if he was coming home and he said he didn't know. About 30 minutes later he pulled up. We got ready for his appointment packed up the kids and took them to his parents. Sitting in the waiting room he said, "What can I do to get this out of my body? I will do anything!" My heart broke listening to him as I tried to tell him to stay positive and that whatever it was we were going to get through it. When they called us back they explained that the CT looks abnormal and they are concerned that it is some form of cancer. Next they went on to explain the billion types of cancer it could possible be but they were leaning more towards Lymphoma. They also mentioned the possibility of Sarcoidosis which has very similar symptoms but its not as common as Lymphoma. Next they completed the needle biopsy and explained that this doesn't always tell them what they need to know so they needed to schedule for a excision biopsy just in case and if it did give them the information that we could cancel the surgery appointment scheduled for the following Friday July 22. As we left the clinic that afternoon it really hit Steve and I on what we were up against. Driving to pick up the kids we cried the entire way home scared of what could happen or what was ahead of us. The one statement that will stick in my head forever that broke my heart more then anything was Steve saying he didn't want to die and leave me and the boys. Is this really happening to us???

Friday July 15, 2011- We received the call from the ENT and just as they had suspected the biopsy was inconclusive and Steve would need to go ahead and proceed with the excision biopsy the following Friday.

That weekend we decided to take off and go camping to try and relax and clear our mind...not sure if it worked because there is a lot of sitting around and enjoy the clear mountain air which leads to a lot of time to THINK. Anyway the kids had a blast so it was great time spent together.

Friday July 22, 2011- At 7:30 am we checked into the hospital for the biopsy and Steve was pretty nervous since this was his first time EVER having surgery. (Did I mention he has always been an very healthy individual with the exception of minor acid reflex?) As I was saying we checked in and they called us back to start prepping Steve for surgery and while they were weighing him they asked how tall he was and he replied, "5-12". The nurse just sat there and stared at him for a minute then replied, "it is a little early for this" then we all started laughing. I am so glad he can still find humor to get us through this. As he was laying there waiting for the anesthesiologist to come and get him Janis walked in. Janis was the Physician Assistant that we first saw at the ENT office that ordered the CT scan. She is amazing and Steve was so relieved to see her there. After surgery she came out to talk to me and told me how well everything went and that the nurse stated Steve has to be one of the easiest patient to take care of. When Steve woke up from anesthesia he did complain that he was having a lot of neck pain but other then that he doing great. Later that day he was home and back to himself cutting the grass and playing outside with the boys....what a trooper!

What a long holiday weekend (non-Utahans this is pioneer day for us) it was waiting around praying for the best and at the point it was for this to be Sarcoidosis...who ever thought we would pray to be diagnosed with that? But it sure sounds better then cancer!

July 27, 2011 @ approx. 7:00 p.m my phone rang and it was the ENT and our emotions changed instantly from proud parents watching their 3 year old play soccer to two scared individual about to find out what direction their life was about to head. After about a 20 minute phone call with the ENT I hung up the phone faced my husband and he knew exactly what I was going to say..."babe just like they suspected you have Lymphoma and to be more specific Hodgkin Lymphoma type Nodular Sclerosis." We sat at the soccer field for about a half hour after the game just trying to comprehend what they just told us. Once we got home and I put the kids to bed I got on the internet to do a little research on the specific type of Lymphoma Steve had been diagnosed with and was very surprised to find that this is thee most common type of Lymphoma diagnosed (80%) and it has the highest success rate for remission or to be CURED! (sign of relief)

July 28, 2011 Steve had his post op appointment with the ENT to check his incision and to go over any question Steve or I may have in regards to his diagnoses. During this appointment the doctor explained to us that yes this is cancer and very serious but it is a very treatable cancer and it can be cured. Next he referred us the a medical oncologist for the following Monday to start the endless test to determine stage and course of treatment. I cannot express how thankful we are for Janis and Dr Gilbert they have been fantastic throughout all of this and worked so quickly to get us the results we need so we can get Steve better as soon as possible. During all this time I have done hours of research and was surprised at how many people in this same situation was missed diagnosed for months then had to wait several months for all the testing be to completed to determine their diagnoses. This hasn't happen to us once since day one when Steve went to Dr. Gee!!!

August 1, 2011- Today we meet with the medical oncologist and she was very positive and stated to us, "Steve I will cure you!" This means the world to us since doctors don't use that term so openly when dealing with cancer patient. She also stated, "if you have to get cancer this is the one you want." I can't tell you how many times we have heard this since Steve was diagnosed. After a through exam and complete review of Steve's previous test results the oncologist did state that she thinks Steve is a stage IIB (stage I and II early stages and 3 and 4 advanced; the B indicates he has active symptoms which usually indicates the Lymphoma is progressing) but until we have the PET/CT scan and bone marrow biopsy she won't be able to tell us the exact stage. Next we discussed the type of Chemotherapy Steve would more then likely be receiving which included the potential side effects and long-term risk. Last they scheduled us for multiple test...
Tuesday: Echocardiogram and Chest X-ray
Wednesday: Chemotherapy Education class
Thursday: PET/CT Scan
Friday: Bone Marrow Biopsy...OUCH, Steve did not like this!
Saturday: Andrology Lab...this is just in case we decide we want more kids. What an experience this was. All I can say is we got a good laugh at of this and we needed a good laugh!
Sunday: BREAK..thank goodness.
Monday: Andrology Lab again!
Tuesday: PFT to check his lungs.
Wednesday: Andrology maybe and tentively schedule for first round of chemo depending on all the above test results.

Now that I have everyone caught up on what has been going on and where we are at in this process I will try to update the blog once a week to keep everyone informed. Steve and I would like to thank everyone for their love and support during this challenging time. Sorry if we haven't responded to your calls, emails, text, etc. But we are just trying to get through all this to get treatment started so Steve can start feeling better. Up until about 2 weeks ago he only felt tired but it is definitely starting to take a toll on him with the lack of sleep and discomfort he is starting to feel. Overall he is staying strong and eager to be back to his HEALTHY outgoing self.

Thanks again for everything everyone has done for Steve and our family!

Love Steve and Angie