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Lainy, Thank you for your prompt reply. As far as the denial is concerned, I have been trying to deny the possibilities of the situation. While other members of the family have all felt he was cured after the massiver surgery 2 years ago. I never felt that way, and always was waiting for the other shoe to drop. I am happy for the 2 years he had, but still want him to have more, of course. I am not as surprised as the others seem to be now.

I have been reading about the adjuvant chemo after surgery, and of course my son was never able to have that because of all the constant bleeds he kept having after he was discharged from JH after the surgery, 2 helicopters and one ambulance transport down to JH. Two of those times he was out, for about 10 days, unconscious on meds while they did procedures. It was touch and go, but he eventually made it and was able to come home. He doesn’t remember very much, about that time, since he was sedated for such long periods each time. However, they said that under the circumstances, his immune system would never tolerate any chemo, radiation or anything of that sort. We are just lucky that Dr. Schulick was there to save him during all those emergencies. Shortly after Jeff finally came home to stay, Dr. S moved to Colorado.

I Have always felt he should have had the chemo after the surgery, (I realize why they couldn’t do it) but I have been reading here and it seems that it does not always prevent a return of the CC. So maybe that made no difference.

So here we are now. He is going to start Chemo, and at the same time, they are going to have to find a place to stay while their home is being elevated after Hurricane Sandy. People are being force to elevate or sell. Seems like almost more than they can be expected to endure.
I blame being unable to live in his home for 6 months after the storm, (so soon after his surgery!!!) for this return of the CC. He worked so hard physically trying to do so many repairs himself. (they had 5 or 6 feet of ocean in their home.) He should have been coming home from work and relaxing, trying to regain his strength and recover from such serious surgery and procedures.

Now again, he will not be able to relax during another stressful medical procedure!
Sooo, I am praying that these meds don’t make him feel too ill, and can hopefully give him more time while feeling better. I know if it were me, I would be after that Marinol. I can’t stand nausea.

Thank you so much for your support, Lainy. I think if I could just cry, I would feel better, but altho I am on the verge, no tears come. I’m not trying to keep it in, it just won’t come out.

My DIL just texted me that my son is being discharged from the hospital. It seems that nothing is being done there now, that can’t be done at home. Of course he is very happy to be coming home. I do not know when they intend to begin the chemo, but I would imagine very soon. At least the sun is shining for him.

Thanks to all for your kind replies and help.
My DIL just phoned me that Dr. Schulick’s assistent just called her, she only now got the message my DIL left.
It seems that Dr. Schulick still does not know that my son is trying to contact him, the doctor is away for 2 weeks. However, his assistant has all the records from John’s Hopkins now. She cannot get the records from Robert Wood Johnson hospital since it seems hospitals do not give out any records until after a patient has been discharged. I do not understand that at all, seems counterproductive to me. In any case, the assistant said they will want him to come out to Colorado for an appointment on April 24, and he will be seen by a whole team of specialists. My DIL was calling me from work, so when she enumerated all the specialists, I could not keep them all in mind, and she was talking hurriedly from work. It seemed like every kind of doctor you can imagine, a whole team.
I would imagine that if Dr, Schulick does not want this appointment to take place when he gets back, he will let us know. I am very happy that they have made contact with my DIL, since she always has the most up to date info, and I, of course get my info 2nd hand.

My son is going to spend the whole weekend and some of next week in the hospital. He evidently had a fungal infection which caused the 3.5 fever.
His temp is good now, the meds are working, and he feels much better. He has been keeping his food down and is on a more normal diet. He cannot begin his chemo till his blood shows that all infection is gone. Nor can he have any other sort of port put in place etc.
I have enomrous swollen glands, and feel awful, (I think it is all getting to me) so I won’t be able to visit him in the oncology ward, but I call him on the phone.

I really misunderstood Dr. Schulick’s assistant and thought she had spoken with him, but at least we have an appointment if the doctor wants him to keep it, and so there is nothing else for me to do in the meantime. I am so glad that they are in direct contact with my DIL now.

Marion,
Thank you so much for the encouragement to try yet again to contact Dr. Schulick. REALLY Good news!!! I was able to contact Dr. Schulick’s office this time, and spoke at length to his assistant about what has been going on with my son. She listened very patiently and then said just a moment, and when she returned she said that Dr. Schulick wants to have all my son’s records sent to him, and the name of the hospital where he is currently in the ER and having the catscan etc. and physician’s name etc.etc. They will contact JH also.
I gave them the necessary info for getting the records, and his assistant said she would call me on Wednesday, and she would ask for all the records and let me know, but that if I wanted to call her in the meantime, she gave me her telephone number. Phew!!!

I could feel my stomach unclenching!! What a high! Thank you so much!! This time I called the link you gave me, it was a different number than we called before.
UPDATE:
My DIL just texted that JH called and wants to know if Robt Woods wants to transport him down there, but he doesn’t want to go, He says it is too far away, and he is sick, his temp is 102 at the moment. they are waiting for the blood cultures to come back, but the cat scan showed that the tumor is wrapped around the stent and they can’t tell if it is blocking the stent or not, (If it is, I suppose that could account for the continued vomiting.) I don’t know how this compares to the last scan taken at JH.
Now I have another question. Tho he does vomit every day, he vomits less than before the stent. He was actually able to eat an English Muffin yesterday, (I was shocked to hear that just now) And he kept the muffin down!!. What comes up, he says, is like a sort of stomach acid, just liquid, so we do not really understand that. Something must be getting through the stent, so it can’t be totally blocked. (seems to me)

My DIL was sooooo happy to hear I had contacted Dr. Schulick!!! But then now she is very upset by having to make yet another decision about whether or not to have him transported down to JH, or let him stay here. I said she should wait and see what Dr. Schulick has to say on Wednesday, and in the meantime, he is safe in Robert Woods hospital which is supposed to be a very good hospital and which is much closer to home.
She just called and is heading home, didn’t want to leave him, but she was up all night, checking his temp. etc. and is really exhausted and has to go to work tomorrow. She will go check on him before she starts.
They are giving him antibiotics and we are hoping he will feel better tomorrow.
I am hoping my extremely swollen glands will go down, so I can feel safe to visit him without fearing I will give him some additional infection.

Thank you so much again. Bless you all, I am so glad I found this wonderful place.

Lainy, looking for your phone while talking on it, I think I have done that, or at least I know I have looked for it, while HOLDING IT, couldn’t find it anywhere of course, since it was in my hand. And always returning to a room to remember why I left it. I’m doing that a lot now.
My DIL just texted that they are giving him his ct scan. She still doesn’t know if he will be admitted. She didn’t say anything about the blood results.

Back 2 years ago when my son had his big surgery, my doctor gave me a prescription for Xanax, and that helped during that emergency.
I get it renewed so I know I have it, but I hesitate to use it, always thinking I should wait for a really bad situation. I have used it when I had to put a dear cat to sleep, that I’d had for about 17 years.
I used it a couple times in the last couple weeks to help me get back to sleep at 2 a.m., and it works, I can take a whole pill, but I only take a half pill. Maybe I should take a half pill now to unclench my stomach while I’m waiting to find out what’s wrong with my son..

I am so glad that you have found a medication that can help you, Bless your heart. I think I am going to try and call Dr Schulick in colorado again, Can’t hurt to try.

Kathy, thank you so much for your reply. My son’s doctor this time was Dr. Kenzo Hirose, so not the same as yours. And we will absolutely ask for a different doctor when he has to return at some point. He has an appointment tomorrow to see about the port in his chest, somewhere up in our area. He was supposed to be slowly weening himself off of the IV nutrition, but has not been able to do that because he is still vomiting, 2 times yesterday.

I am so sorry that you had such a hard time in the beginning. I am glad you were finally able to get satisfactory help. That is a blessing.

No, I do not have access to records online, never heard of them, but will check on that and mention it to my daugher in law. She is handling everything. The woman she spoke to at JH last week, about trying to get a sooner oncologist appointment was very disagreeable and rude to her, and she was not able to change the appointment. I just don’t understand how it is possible for her to be running into so many extremely disagreeable people now when we need help so desperately. Everyone at JH was so wonderful 2 years ago.

It is difficult to not have first hand info from the doctors myself, but at my age, 81, she has much more energy and resilience than I do for handling all this, She is getting really tired and frustrated at this point tho, seemingly blocked at every turn . Not only is the disease devestating, but the struggles finding effective care, all the roadblocks and red tape, make it even more difficult than it is already because we wind up so angry in addition to being heartbroken.

UH OH!! Uh oh!!! I just this minute got a text from my D in L, my son has had to go to the ER and may well be admitted to the hospital, Robert Woods Johnson U hospital. They are waiting on blood results. And he may well have a CT to check the stent placement too. I’m glad about that.

He has a fever, and they suspect the Picc line is infected. AGAIN dr. Hirose, should not have sent him home from JH for IV nutrition without a port!!! since the picc lines can get infected. That man has done nothing right, it seems!!! Yes, I am sooo angry with him.
OK, I will tell another reason why I am so angry with this man for wasting our precious time. Probably not PC, but here goes…

For many weeks we were unable to get Dr. Hirose in JH to take the time to consider my sons condition. Prior to his being admitted this time, over the course of MANY long weeks of vomiting and inability to keep food down, and an endoscopy up here, we were unable to get Dr. H to reply to calls from our physicians up here, tho the local doctors had sent images and records of their attempts to help him. He simply did not reply, no calls back. He just didn’t seem to want to bother with my son at all, and didn’t return calls from my desperate D in Law either. Because of the extremely complicated surgery he had had 2 years ago, (the rouen-Y and lobectemy etc.) these local doctors were hesitant to take any steps, and wanted help from JH. Our doctors up here felt baffled, and I think that is understandable considering the complexity of the surgery he had in 2012 and how few hospitals do that sort of surgery.

Their GP up here, a caring and responsive man, had an endoscopy and cat scan done and sent those to JH, but still no response from Hirose. Finally after desperately taking him to an ER in our area to be hydrated, the next day, beside herself with worry and still having received no contact with JH, she finally just put him into the car and started down to JH, a 3 1/2 hours drive, calling first to say they were on their way and giving JH a heads up.

Hirose had his nurse call back as they were driving and said to turn around, go back home, and take some milk of magnesia, and a couple enemas, that he was probably constipated. He did that, and as a result wound up in the ER again, even more dehydrated, and was admitted to the hospital in renal failure.
How he could recommended Milk of Magnesia and enemas to someone who had been unable to keep food down for several weeks, and who had already been in an ER to be given fluids for dehydration, I do not know!!! Seems absurd to me, but yes, I know i am not a doctor, still…..

If he had not been sent home and had been admitted to JH, he could have been treated several weeks earlier. as it was, It took Centra State up here almost 2 weeks just to get his numbers back to normal. We are lucky he didnt’ have a heart attack, we are so lucky we didn’t lose him then. Finally when they did get his numbers back to normal, they were able to contact JH, and that time they had to wait a few days for a bed, and of course the snow storm. He was finally transported down by ambulance.

I have no confidence in this man at all. Our new doctor already said he couldn’t understand how JH could send him home without a port, and now we are seeing the results of that bad judgement with this possible picc line infection!!

Ok, I vented, Maybe I shouldn’t have, but it just seems that by his unresponsiveness to all the pleas from our doctors and my D in L over the last couple months we have lost precious months when my son should have been getting proper treatment. I pray that all this lost time will not impact my son’s treatment too badly. Really sorry if I have said too much. Yes, my info is all 2nd hand, I realize that, but my D in L has kept me informed at every move they make. Poor woman is emotionally exhausted at this point, and their little 7 year old daughter is suffering too from seeing her father in such awful condition, over the last couple months. I must stop, this is much too long. Forgive me.

Kwolland and others, I want to thank you all so much for your replies, bless you KV, and I pray that your husband feels better soon. The endoscopists did go in and look and said that the stent was still in place and working, and that they could tell that there was some food emptying from the stomach, which was why they could not understand the continued vomiting.

My daughter in law and I have both called and left messages for Dr. Schulick, but so far after a couple weeks, we have not heard back from Dr. Schulick. When I called, the lady said that he is chief of surgery and has a very full schedule, but she would leave the message.

Kathy, thank you so much, it is good to know that someone else had problems of the same kind and managed to get relief. I will tell my family about it. Hopefully we will be able to get a different doctor and team. You did not mention who the first doctor was, and I am wondering if perhaps we might have had the same person.
You said, ” Maybe you were being PC to not mention who is doing the follow-up at JH.” I do not know what PC means. I just did not know if it would be correct to mention his name.
Thank you Willow, I will search for Lisa S.
Marions, I went to the link and it seems to be the same building we called 2 times so far, but the number is different, so I will try again tomorrow. and thank you Lainy, I will not leave, I am so glad I found you all.