Mary & Joe Update Feb 25th

[maryaz]

Since Doris and Jackie had posted previously, I felt I may as well bring my updates here myself. I know you don't have all the info that I posted elsewhere and so hopefully this makes sense. The brain scan did come back okay and no problems. We have had some good family visitors during the past week or so and that has been uplifting during a difficult time. Today was the beginning of the Chemo and Radiation.

Today, Monday, Feb 25th, radiation went okay. Didn't do well with the Chemo. I understand the experience was frightening. Joe said he was feeling a strange feeling inside and apparently turned very red, couldn't breath good and suddenly had the attention of many as oxygen was put on for about 30 minutes and whatever else they do. When I picked him up I said "you were in trouble, huh?" He said 'yes'. I really didn't expect that. We were told in Chemo class that there is always a Dr available when someone is new to treatment. Guess we see why.

Keep in mind that this is all new to us too. Someone shared the following with me about something like this:

"The allergic reaction comes on rather suddenly, while the drug is going in, and causes problems with breathing, pulse, blood pressure, or other vital functions which require immediate attention. I believe there's a rule -- at least there was at my clinic -- that for the first infusion an oncologist has to be present within the facility, not just on call."

Needless to say, this was off to a bad start. He had a reaction to the Taxol. Taxol is only 1 of 2 meds they are using. He did do the other one okay after they got him back on track.

He was in bed today trying to get rid of a bad headache for hours. If he is in bed during the day, there is something wrong. He had this headache before he left for radiation this morning and so we are not contributing it to the treatment. However, I wonder if it could be from the Dexamethasone that he took 12 and 6 hours before chemo?

They have set his schedule better on the Monday Chemo days. He will go to Radiation at 7:40 AM and Chemo at 8 AM on Mondays. He only does Chemo on Mondays and does Radiation Mon thru Fri.

I am calling tomorrow to find out if what he understands is correct and why. He says that they will figure out what other medicine to use when he sees the doctor but that will not be until March 14th.

If the delay for the meds is just because Dr is out of town, this is no longer acceptable to me. That happens to us too much. Maybe it is not a problem but I need to find out now. It is a big office with lots of doctors and PAs too I think. Surely, he doesn't wait on one part of his treatment because Dr. is out of town. I hope Joe just misunderstood, or that the medicine can wait without being an issue.

[Blossom/Jackie W.]

Mary; Thank you for taking the time to update e'one here. I realize you may not have felt like doing so... it sounds like it was a rough day.

Here's hoping Joe merely misunderstood. I can't see them delaying it either for the sake of one Dr. Please let us know what you discover.

My prayers are continuing for you both.

[John]

Thanks Mary . You & Joe are in my prayers

[LindaNY]

Thanks for the update, Mary. This has to be extremely difficult and stressful for both of you.
Hopefully you will get a satisfactory explination about that delay.

Please keep us updated, when you can.

[cocojax]

Thanks for the update Mary, you and Joe are both in my thoughts...Sounds like you both stand beside each other and support each other, that is very special.

[Joyce7]

Mary---I can't imagine the stress and fatigue both you and Joe must be feeling right now. You are both in my prayers morning and night. Tell Joe to fight with all his might and just let the medicine work and do it's job. We will all be praying. And, you, try to get enough sleep and eat well to maintain your strength. We're here for you....Joyce in SC

[cheryl]

Thank you Mary - Sending prayers your way.

[maryaz]

maryaz said:

I am calling tomorrow to find out if what he understands is correct and why. He says that they will figure out what other medicine to use when he sees the doctor but that will not be until March 14th.

If the delay for the meds is just because Dr is out of town, this is no longer acceptable to me. That happens to us too much. Maybe it is not a problem but I need to find out now. It is a big office with lots of doctors and PAs too I think. Surely, he doesn't wait on one part of his treatment because Dr. is out of town. I hope Joe just misunderstood, or that the medicine can wait without being an issue.

I called the Oncology office today and talked to the Triage person. I told her what Joe was told and she agreed. I asked if another doctor couldn’t say what to give Joe. She said wait until Joes’ Dr gets back. I was being nice. I even told her that I was trying to be nice but we have had too many delays. I was not speaking bad of anyone but we had to wait for the Heart Dr to come back to go over the Stress Tests and then we had to wait on the Pulmonary Dr because Joe wanted to talk to him about the Needle Biopsy and he was gone. We kept getting put off and delayed.

I proceeded to ask her “and we are expected to wait about 2 1/2 weeks to see what medicine Joe will be getting?”. Dr himself said he didn’t want to wait past 2 weeks or 3 at the most. and this is week 3. I told her this is all new to me and I know very little about cancer and I then told her that if she could explain to me that it is okay to wait for him to start the medicine then I would accept that. It all went something like that.

After I asked the above question, I was put on hold, she came back, told me they would call the Dr and get back to me. Wasn’t long and I was told that he is having Joe now use what I thought she said Parotere. I think the P was maybe a T that I didn’t hear right and I forgot to put the line thru my x and looked like an r. That would make it Taxotere which is a chemo drug. I had gotten a little nervous by then. I am not used to making this type of call. I have a big motivation and interest in this treatment. :DI also don’t want to make waves. Joe has said that everyone there is very nice and they were the day I was there.

Today he got a warm feeling around his head and some symptoms that were questionable and he talked with the woman on the phone about the time I was done. She had him take his temp. In the end she decided to have him stop in and see the Dr in the morning. I felt like saying but which doctor. She felt he is okay but better check him. We think it is just the meds working probably.

BTW, we know why the doctor isn’t in. (He is having twins). Don’t know who told Joe that. I thought he found out at Radiation.

Jackie: It is through having met people like you and many others over the last few years that has taught me that we do need to be more Proactive. You sure are an example of that. For today, I thank you for that message as this is my husband's life. What they were saying didn't make sense to me.

[Blossom/Jackie W.]

Mary; first off let me say I hope that it's just the meds working for Joe. I'm sure that it is but considering his previous reaction it's smart not to take chances and have him checked.

Good for you in not just sitting back and accepting (like a lamb to slaughter) simply becasue that's what they told you (or Joe I guess it was in this case)

It's a delicate emotional line that we walk and we start our own inner turmoil. Quite often our thoughts go the way of ..."well if I make waves they may not be as helpful, or we might not get the medical attention or as good a care etc etc... Those thoughts cross our minds. We want to say something but we're afraid his treatment may not go as well if we upset the apple cart.

But; Bingo! You hit the nail on the head when you said "This is my husband's life."

You do what needs to be done or said...this is not a rehearsal or dry run and there's no turning back the clock and you don't want to be second guessing after the fact. Just continue to trust your gut instincts Mary.

You don't need to be an "in the face" kind of person (you're not anyway ); just use diplomacy, tact, reasoning and insistance. Sounds like you did that very well. Good for you!

I'm proud of you. This is such a tough road for you both. Mentally & physically. Joe would speak up for you; just as you are speaking up for him. And that's the way it should be.

Please keep us informed as you go along but only if/when you're up to it. We don't want you getting ill.

Good Luck Mary. Our prayers will continue.

[muffin]

Mary, my thoughts and prayers will continue on for you, Joe and family. God bless you and gently guide you through this unto the end.

[maryaz]

I have not been posting anywhere and tonight I thought I would try to stop by a few places before we start another week.

This past week has not been good. The Allergic Reaction we had on the 25th was mild compared to this week. We only just finished week 2 of 6. Joe didn't even make it to radiation on Friday as he was too sick.

I am not going into any details. He is getting better today and hope he continues to improve. He did agree today to go back to treatments but was very seriously talking about quitting altogether.

I thank you for the prayers and they mean a lot. Muffin, Jackie, Cheryl, Joyce, and others too many to mention you all, thank you for the thoughts and prayers.

Cheryl; If you are making your own graphics, you sure have good tastes. So many of yours I like and little different.

[LindaNY]

Oh Mary, you and Joe are in my thoughts and prayers. ((( hugs))) and be sure to take care of yourself too.
I hope you have family helping you out.

[cheryl]

Mary, Thank you. I made most of my tags. I wish there were some miracle words that would lift your spirits. I think of you and Joe often and am keeping you both in my prayers. Please remember to keep yourself healthy during this difficult journey.

[Joyce7]

Mary---I know this is an awful time for you and Joe to go through. My prayers are with you, and please try to get enough sleep and take care of yourself...Joyce in SC

[bobbioh]

Mary you and joe are in my thoughts and prayers. Im pulling for you. Hang in there. Take care bobbioh

[maryaz]

Thank you all for the thoughts and prayers. Joe ended up in ER this AM and they are keeping him to find out why there is some bleeding that apparently shouldn't be happening. They said if they sent him home, then they couldn't get to him quick enough.

If this all is what makes people strong, we should be considered rocks soon but by today's reactions we are both very far from that.

All is quiet tonight and no real reports yet. CTScan didn't show anything and may do bronchoscope yet. Other problems too. He didn't get into a room until tonight.

The first 3/4 of this day were downers for me, Joe and several other family members. Keep praying. Thank you all.

[Blossom/Jackie W.]

I have copied and pasted Mary's latest report into a new thread otherwise it will get lost in older posts. Please see today's entry "MarzAz & Joe Update March 10th"

Jackie